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>> JILL: WELCOME, EVERYONE
TO 

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SESSION SIX OF ETHICAL AND 

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REGULATORY ASPECTS OF CLINICAL 

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RESEARCH.  IT'S HARD TO IMAGINE 

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WE JUST HAVE ONE MORE SESSION.  

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TODAY, WE'RE GOING TO HAVE, I'M 

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GOING TO INTRODUCE DR. FISHER IN

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A MOMENT SHE'S GOING TO GIVE A 

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PRESENTATION THEN WE'RE GOING TO

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WORK THROUGH A CASE WITH ME AND 

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THEN WE'RE GOING TO HAVE A PANEL

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OF INDIVIDUALS WHO HAVE 

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PARTICIPATED IN CLINICAL TRIALS 

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HERE AT THE CLINICAL CENTER.  

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I'M VERY EXCITED ABOUT THAT.  

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THAT WILL BE AFTER OUR BREAK.  

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AND ONE QUICK, TWO QUICK 

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ANNOUNCEMENTS.  IF YOU HAVE 

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QUESTIONS, PLEASE POST THEM IN 

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THE DISCUSSION BOARD OR SEND 

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THEM TO THE E-MAIL, AND FOR 

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THOSE OF YOU INTERESTED IN WHEN 

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YOU WILL RECEIVE YOUR 

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CERTIFICATES, THE COURSE CLOSES 

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ON NOVEMBER 20TH WHICH MEANS 

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THAT ANYONE WHO NEEDS TO CATCH 

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UP ON VIDEOS AND QUIZZES CAN DO 

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SO.  WE ARE GOING TO SEND THE 

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CERTIFICATES WITHIN TWO WEEKS 

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AFTER THAT, SO IT'LL BE A LITTLE

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WHILE BUT YOU'LL DEFINITELY GET 

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ONE.  SO WITH THAT, I'M GOING TO

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INTRODUCE DR. JILL FISHER 

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JOINING US FROM THE DEPARTMENT 

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OF SOCIAL MEDICINE AND THE 

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CENTER FOR BIOETHICS AT THE 

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UNIVERSITY OF NORTH CAROLINA.  

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SHE HOLDS A PH.D. IN SCIENCE AND

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TECHNOLOGY STUDIES AND 

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EXCITINGLY FOR US, HER RESEARCH 

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FOCUSES ON HOW CLINICAL TRIALS 

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ARE CONDUCTED AND WHO 

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PARTICIPATES IN THEM AS 

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RESEARCHERS AND PARTICIPANTS AND

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TODAY SHE'S GOING TO TALK WITH 

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US ABOUT HEALTHY PARTICIPANTS IN

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CLINICAL TRIALS.  

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>> JILL: THANK YOU SO
MUCH.  I'M

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REALLY EXCITED TO BE HERE TODAY.

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THERE'S A LOT THAT I COULD SAY 

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ABOUT HEALTHY VOLUNTEERS AND I 

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WILL SAY A LOT.  BUT I THOUGHT 

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IN PARTICULAR I WOULD FOCUS ON 

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ETHICAL ISSUES RELATED TO 

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RESEARCH PAYMENTS SINCE THIS IS 

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ONE OF THE AREAS THAT MAKES 

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HEALTHY VOLUNTEER TRIALS 

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DIFFERENT FROM CLINICAL TRIALS 

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WITH PATIENTS.  SO AS I 

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UNDERSTAND IT YOU'VE ALREADY 

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GOTTEN A LITTLE BIT OF A PRIMER 

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ON DRUG DEVELOPMENT AND HOW 

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DRUGS GET TO THE MARKET AND WHAT

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THE WHOLE PROCESS IS LIKE BUT I 

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THOUGHT I WOULD REVIEW THIS TO 

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COMPLICATE THE IDEA OF HOW THIS 

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PROCESS WORKS A LITTLE BIT.  SO 

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USUALLY WHEN WE THINK ABOUT DRUG

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DEVELOPMENT IT'S DEPICTED AS A 

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VERY LINEAR PROCESS OFTENTIMES 

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WITH AN ARROW OR A FUNNEL OR 

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SOMETHING LIKE THAT WHERE WE SEE

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ON ONE END WE START WITH BASIC 

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RESEARCH AND IF THINGS LOOK 

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PROMISING IT MIGHT MOVE INTO 

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PRECLINICAL ANIMAL RESEARCH AND 

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THEN IF THAT LOOKS PROMISING WE 

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WOULD START HUMAN TRIALS AND WE 

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HAVE THIS SYSTEM IN THE U.S. OF 

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THINKING ABOUT CLINICAL TRIALS 

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AS PHASED SO ONE, TWO, AND 

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THREE.  AND SO FOR THE PURPOSES 

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OF THE FDA, YOU KNOW, IF WE 

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ACTUALLY WANT TO GET A DRUG OR 

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THERAPY ON THE MARKET, DRUGS 

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HAVE TO GO THROUGH THESE STEPS 

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SO PHASE ONE TRIALS ARE THE ONES

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THAT ARE DESIGNED TO EVALUATE 

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THE SAFETY AND TOLERABILITY OF 

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AN INVESTIGATIONAL PRODUCT.  

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THESE ARE THE ONES THAT USUALLY 

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USE HEALTHY VOLUNTEERS.  AS LONG

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AS THERE AREN'T ANY MAJOR SAFETY

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ISSUES THAT EMERGE FROM THERE.  

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THE STUDIES MIGHT PROCEED INTO 

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PHASE TO TRIALS AND I LIKE TO 

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THINK OF THESE AS PROOF OF 

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CONCEPT STUDIES, THESE ARE 

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RELATIVELY SMALL, NOW THEY'RE 

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ACTUALLY USING PATIENTS AS THEIR

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PARTICIPANT POPULATION BUT 

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THEY'RE STILL LOOKING AT SAFETY 

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AND  ISSUES AT THE SAME TIME AS 

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DRUG I HAVE -- EFFICACY 

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IF SO, THEN IT WILL PROCEED TO 

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PHASE THREE TRIALS WHICH ARE 

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MORE THE ONES WE TEND TO THINK 

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OF BECAUSE THESE ARE THE LARGER 

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SCALE ONES, THESE ADHERE TO 

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COMPLETE AND THE ONES THAT FDA 

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IS BASED ON.  I WANT TO 

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COMPLICATE THIS NOTION A LITTLE 

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BIT BECAUSE IT DOES IMPLY THAT 

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ONE STEP HAS TO OCCUR TO GET TO 

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THE NEXT STEP AND THAT IT'S ALL 

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DONE IN THIS VERY ORDERLY 

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FASHION BUT WHEN WE ACTUALLY 

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LOOK AT THE CLINICAL TRIAL 

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PORTFOLIOS, OF PHARMACEUTICAL 

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COMPANIES WE SEE IT'S ACTUALLY 

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MUCH MORE COMPLICATED THAN THAT 

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AND MUCH MORE FLUID.  SO FOR 

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INSTANCE, FOR THE WHOLE PROCESS 

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OF NON-CLINICAL RESEARCH, 

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NONHUMAN ANIMAL STUDIES 

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CONTINUE.  SO THESE ARE 

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CONTINUING OFTENTIMES RIGHT UP 

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TO FDA APPROVAL SO HUMAN TRIAL 

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CONSIST START BEFORE THE ANIMAL 

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STUDIES ARE DONE AND SO I 

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MENTION THIS BECAUSE ONE OF THE 

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REASONS THAT THIS IS IMPORTANT 

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IS A LOT OF TIMES THERE ISN'T 

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VERY MUCH KNOWN ABOUT 

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REPRODUCTIVE TOXICITY WHEN THEN 

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HAS IMPLICATIONS FOR WHO IS 

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ALLOWED TO ENROLL IN EARLY PHASE

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HUMAN TRIALS.  ANOTHER IMPORTANT

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PIECE OF THIS IS THAT WHEN WE 

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THINK ABOUT HEALTHY VOLUNTEERS 

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IN THIS DRUG DEVELOPMENT PROCESS

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WE OFTEN THINK OF THEM AS THE 

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ONES THAT ARE DOING THESE FIRST 

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IN HUMAN STUDIES SO LITERALLY 

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THE FIRST TIME THAT A HUMAN IS 

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TAKING A DRUG OR TREATMENT.  

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HOWEVER THERE ARE OTHER STUDIES 

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THAT ARE LOOKING AT SAFETY, 

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TOLERABILITY AND THESE ACTUALLY 

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CONTINUE UP TO SOMETIMES THE 

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TIME A COMPANY IS SUBMITTING 

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THEIR NEW DRUG APPLICATION TO 

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THE FDA.  I WILL TALK, YEAH SO, 

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IN ADDITION TO THOSE FIRST IN 

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MAN OR FIRST IN HUMAN STUDIES 

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THAT ARE REALLY, AGAIN, YOU 

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KNOW, SOMETIMES WE THINK OF IT 

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AS AN A, PHASE ONE TRIAL BUT 

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REALLY IS A WHOLE PORTFOLIO OF 

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CLINICAL TRIALS BECAUSE WHAT'S 

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HAPPENING IS IT REQUIRES 

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MULTIPLE STUDIES TO MEASURE 

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TOLERABILITY SO YOU SEE 

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INCREASES DOSES OF A DRUG AND 

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WHAT HAPPENS WHEN YOU GIVE THEM 

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TO HEALTHY VOLUNTEERS.  

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SOMETIMES MULTIPLE DOSES.  SO 

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ALL OF THESE THINGS ARE PART OF 

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THE PHASE ONE PROCESS.  BUT THEN

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AS I WAS SAYING, MAYBE LATER IN 

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THE DRUG DEVELOPMENT PROCESS 

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WHEN A COMPANY BELIEVES THAT A 

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DRUG MIGHT ACTUALLY GET TO THE 

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MARKET THEY ARE INCENTIVIZED TO 

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DO OTHER KINDS OF STUDIES AND 

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THEY USE HEALTHY VOLUNTEERS FOR 

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THESE TOO.  IF YOU THINK ABOUT 

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PRESCRIPTION DRUGS THAT YOU MAY 

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HAVE TAKEN AT VARIOUS POINTS IN 

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YOUR LIFE, IT MIGHT SAY TAKE 

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THIS DRUG ON AN EMPTY STOMACH OR

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WITH A MEAL SO THEY USE THOSE 

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WITH VOLUNTEERS.  ADDITIONALLY 

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SOMETIMES THE FDA REQUIRES 

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COMPANIES TO DO DRUG DRUG 

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INTERACTION STUDIES BECAUSE THEY

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KNOW PATIENT POPULATIONS MIGHT 

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BE TAKING THIS NEW DRUG. 

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SO HEALTHY VOLUNTEERS ARE ALSO 

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USED FOR INTERACTION STUDIES AND

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A HUGE USE OF HEALTHY VOLUNTEERS

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IS TO GET GENERIC DRUGS ON THE 

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MARKET SO TO GET A GENERIC ON 

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THE MARKET A COMPANY DOESN'T 

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NEED TO GO THROUGH THE WHOLE 

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PROCESS OF RETESTING THE DRUG IN

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THE SAME SENSE AS THE BRAND NAME

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DRUG.  THEY JUST NEED TO PROVE 

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THAT IT'S BIOEQUIVALENT TO THAT 

200
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BRAND NAME DRUG SO IN OTHER 

201
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WORDS THAT THE DRUG IS ABSORBED,

202
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METABOLIZED, DISTRIBUTED AND 

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EXCRETED IN THE SAME WAY THAT 

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THE BRAND NAME DRUG SO THEY USE 

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HEALTHY VOLUNTEERS FOR THESE 

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STUDIES THIS IS TO SAY THAT 

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HEALTHY VOLUNTEERS ARE USED IN 

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LOTS OF DIFFERENT KINDS OF 

209
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STUDIES AS PART OF THE DRUG 

210
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DEVELOPMENT PROCESS BUT FOCUSED 

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ON SAFETY AND TOLERABILITY.  SO 

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WHY USE HEALTHY VOLUNTEERS?  WHY

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NOT JUST USE PATIENTS SO THERE 

214
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ARE A VARIETY OF REASONS THAT 

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HEALTHY VOLUNTEERS ARE USED IN 

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CLINICAL RESEARCH.  SO, ONE 

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RATIONALE IS THE ONE THAT I 

218
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THINK OF AS SEPARATING THE 

219
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SIGNAL FROM THE NOISE IF YOU USE

220
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PATIENTS AND YOU'RE TRYING TO 

221
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DETERMINE THE SAFETY PROFILE OF 

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A DRUG IT COULD BE DIFFICULT TO 

223
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DETERMINE WHAT IS -- WHAT KIND 

224
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OF SYMPTOMS ARE CAUSED BY THE 

225
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DRUG ITSELF VERSUS WHAT'S KIND 

226
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OF A SYMPTOM RELATED TO THE 

227
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ILLNESS ITSELF SO HEALTHY 

228
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VOLUNTEERS ARE SORT OF A CLEAN 

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SLATE IN THIS SENSE SO 

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POTENTIALLY TO HELP ADJUDICATE 

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WHETHER SOMETHING IS A DRUG 

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AFFECT OR NOT.  IT'S ALSO BEEN 

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ARGUE THAT HAD BECAUSE HEALTHY 

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VOLUNTEERS ARE HEALTHY THERE'S 

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LESS RISK TO THEM OF TAKING AN 

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INVESTIGATIONAL DRUG SO IF WE 

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THINK ABOUT THEIR KIDNEYS AND 

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LIVERS THESE ARE FUNCTIONING 

239
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NORMALLY SO WE WOULD EXPECT THEM

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TO PROCESS DRUGS MORE QUICKLY 

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AND CLEAR THEM OUT OF THEIR 

242
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SYSTEM.  THAT'S ANOTHER REASON 

243
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WHEN WE LOOK AT SAFETY ISSUES TO

244
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USE HEALTHY VOLUNTEERS.  ANOTHER

245
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BIG REASON WHICH IS, I KIND OF 

246
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THINK OF AS PROBABLY THE BIGGEST

247
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REASON DRIVING THIS IS THAT 

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HEALTHY VOLUNTEERS ARE MUCH MORE

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AVAILABLE THAN PATIENTS ARE.  SO

250
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THEY'RE SORT OF THIS SPEED AND 

251
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ECONOMIC REASON TO USE HEALTHY 

252
00:09:19,741 --> 00:09:21,843
VOLUNTEERS THAT IT'S MUCH 

253
00:09:21,843 --> 00:09:24,179
QUICKER AND EASIER TO CREATE A 

254
00:09:24,179 --> 00:09:26,615
COHORT OR A PANEL OF HEALTHY 

255
00:09:26,615 --> 00:09:28,550
VOLUNTEERS TO DO THESE CLINICAL 

256
00:09:28,550 --> 00:09:30,085
TRIALS THAN IT WOULD BE TO TRY 

257
00:09:30,085 --> 00:09:31,386
TO FIND PATIENTS TO DO THEM.  

258
00:09:31,386 --> 00:09:34,890
AND THEN FINALLY, THERE'S ALSO 

259
00:09:34,890 --> 00:09:36,591
AN ETHICAL RATIONALE THAT'S 

260
00:09:36,591 --> 00:09:39,061
GIVEN IN THE SENSE THAT WE DON'T

261
00:09:39,061 --> 00:09:40,829
TYPICALLY EXPECT THERE TO BE ANY

262
00:09:40,829 --> 00:09:42,130
BENEFIT TO PARTICIPANTS IN PHASE

263
00:09:42,130 --> 00:09:46,668
ONE OR EARLY PHASE TRIALS.  AND 

264
00:09:46,668 --> 00:09:48,003
SO GIVEN THAT WE DON'T EXPECT 

265
00:09:48,003 --> 00:09:49,805
THAT BENEFIT, THERE'S THIS IDEA 

266
00:09:49,805 --> 00:09:51,907
THAT WHY DON'T WE SAVE PATIENTS 

267
00:09:51,907 --> 00:09:53,442
FOR TRIALS THAT MIGHT ACTUALLY 

268
00:09:53,442 --> 00:09:54,509
BENEFIT THEM MORE SO PHASE TWO 

269
00:09:54,509 --> 00:09:56,511
OR PHASE THREE TRIALS.  TO BE 

270
00:09:56,511 --> 00:10:02,217
ABLE TO CONVEY THAT BENEFIT TO 

271
00:10:02,217 --> 00:10:06,054
PARTICIPANTS.  SO A REALLY 

272
00:10:06,054 --> 00:10:08,890
UNIQUE ASPECT OF HOW PHASE ONE 

273
00:10:08,890 --> 00:10:10,058
TRIALS ARE CONDUCTED TO PHASE 

274
00:10:10,058 --> 00:10:12,494
THREE TRIALS IS THAT THEY'RE 

275
00:10:12,494 --> 00:10:14,196
USUALLY CONDUCTED AS INPATIENT 

276
00:10:14,196 --> 00:10:15,097
CONFINEMENT STUDIES AND THAT 

277
00:10:15,097 --> 00:10:17,199
MEANS THAT PARTICIPANTS ARE 

278
00:10:17,199 --> 00:10:18,100
LITERALLY CHECKING INTO A 

279
00:10:18,100 --> 00:10:19,668
RESEARCH FACILITY FOR THE LENGTH

280
00:10:19,668 --> 00:10:22,037
OF THE TRIAL.  AND THE LENGTH 

281
00:10:22,037 --> 00:10:23,472
COULD VARY DRAMATICALLY 

282
00:10:23,472 --> 00:10:25,173
DEPENDING ON THE DESIGN OF THE 

283
00:10:25,173 --> 00:10:26,441
STUDY.  SOMETIMES IT'S JUST A 

284
00:10:26,441 --> 00:10:29,678
DAY OR TWO.  ONE OF THE STUDIES 

285
00:10:29,678 --> 00:10:31,847
THAT PARTICIPANTS THAT WERE IN 

286
00:10:31,847 --> 00:10:35,050
MY STUDY OF HEALTHY VOLUNTEERS 

287
00:10:35,050 --> 00:10:37,519
WE'RE IN WAS A 45 DAY STUDY SO 

288
00:10:37,519 --> 00:10:38,987
THEY LITERALLY CHECKED INTO A 

289
00:10:38,987 --> 00:10:40,989
RESEARCH FACILITY AND DIDN'T 

290
00:10:40,989 --> 00:10:43,291
LEAVE IT FOR 45 DAYS YOU CAN 

291
00:10:43,291 --> 00:10:44,893
IMAGINE TO GET PEOPLE TO DO THIS

292
00:10:44,893 --> 00:10:46,728
YOU HAVE TO PAY THEM OTHERWISE 

293
00:10:46,728 --> 00:10:47,562
IT WOULD BE A LITTLE BIT HARD TO

294
00:10:47,562 --> 00:10:49,197
IMAGINE THAT PEOPLE WOULD GIVE 

295
00:10:49,197 --> 00:10:52,000
UP SO MUCH OF THEIR TIME TO DO 

296
00:10:52,000 --> 00:10:55,303
IT.  AND SO THE TYPICAL 

297
00:10:55,303 --> 00:10:56,571
COMPENSATION FOR THESE TRIALS IS

298
00:10:56,571 --> 00:10:58,607
BASED ON THE LENGTH OF THE TRIAL

299
00:10:58,607 --> 00:10:59,274
AND SPECIFICALLY HOW MANY NIGHTS

300
00:10:59,274 --> 00:11:01,376
THEY HAVE TO SPEND IN THE 

301
00:11:01,376 --> 00:11:02,611
FACILITY SO THE GOING RATE IS 

302
00:11:02,611 --> 00:11:04,079
ABOUT TWO HUNDRED TO TWO HUNDRED

303
00:11:04,079 --> 00:11:06,782
FIFTY DOLLARS A NIGHT.  AND THE 

304
00:11:06,782 --> 00:11:10,285
AVERAGE CLINICAL TRIAL PAYS 

305
00:11:10,285 --> 00:11:12,654
ABOUT 3,000 DOLLARS.  ANOTHER 

306
00:11:12,654 --> 00:11:14,222
COMPONENT OF THIS IS THAT THE 

307
00:11:14,222 --> 00:11:16,258
RESEARCH CLINICS REALLY TEND TO 

308
00:11:16,258 --> 00:11:17,225
LIKE TO USE PARTICIPANTS WHO 

309
00:11:17,225 --> 00:11:20,495
HAVE DONE THE STUDIES BEFORE.  

310
00:11:20,495 --> 00:11:24,099
BECAUSE THEY NEED TO STAY IN 

311
00:11:24,099 --> 00:11:25,767
THESE PLACES AND OFTEN PEOPLE 

312
00:11:25,767 --> 00:11:27,769
HAVE THE RIGHT TO WITHDRAW FROM 

313
00:11:27,769 --> 00:11:29,271
CLINICAL RESEARCH.  THE HOPE IS 

314
00:11:29,271 --> 00:11:30,605
THAT THEY WON'T WITHDRAW AND SO 

315
00:11:30,605 --> 00:11:33,175
A LOT OF TIMES THE RESEARCH 

316
00:11:33,175 --> 00:11:34,142
FACILITIES FEEL LIKE WELL, IF WE

317
00:11:34,142 --> 00:11:35,577
HAVE PEOPLE THAT WE KNOW AND WE 

318
00:11:35,577 --> 00:11:36,244
TRUST WE'LL ACTUALLY GET THROUGH

319
00:11:36,244 --> 00:11:38,914
THE STUDIES.  THAT'S BENEFICIAL 

320
00:11:38,914 --> 00:11:40,482
TO US.  SO THEY OFTEN LOOK FOR 

321
00:11:40,482 --> 00:11:42,384
PEOPLE WHO HAVE GONE THROUGH 

322
00:11:42,384 --> 00:11:43,985
TRIALS BEFORE, KNOW WHAT IS PART

323
00:11:43,985 --> 00:11:48,190
OF THOSE TRIALS.  AND PRIORITIZE

324
00:11:48,190 --> 00:11:48,957
THOSE INDIVIDUALS.  AND I'LL 

325
00:11:48,957 --> 00:11:51,526
TALK ABOUT THE PEOPLE WHO WANT 

326
00:11:51,526 --> 00:11:52,394
TO PARTICIPATE OVER AND OVER 

327
00:11:52,394 --> 00:11:56,765
AGAIN IN STUDIES AS WELL.  IT 

328
00:11:56,765 --> 00:11:58,867
OFTEN, PEOPLE OFTEN ASK ME, 

329
00:11:58,867 --> 00:12:00,635
LIKE, WELL HOW RISKY ARE THESE 

330
00:12:00,635 --> 00:12:01,870
STUDIES TO HEALTHY VOLUNTEERS 

331
00:12:01,870 --> 00:12:03,839
AND THAT'S A HARD QUESTION TO 

332
00:12:03,839 --> 00:12:05,907
UNDERSTAND.  OF COURSE IT 

333
00:12:05,907 --> 00:12:06,341
DEPENDS ON WHAT THE 

334
00:12:06,341 --> 00:12:08,210
INVESTIGATIONAL DRUG IS AND WHAT

335
00:12:08,210 --> 00:12:10,145
PROCEDURES ARE PART OF A STUDY 

336
00:12:10,145 --> 00:12:13,315
AS WELL.  SOME PEOPLE HAVE TRIED

337
00:12:13,315 --> 00:12:15,717
TO QUANTIFY THIS BY DOING 

338
00:12:15,717 --> 00:12:16,985
METAANALYSES OF MULTIPLE STUDIES

339
00:12:16,985 --> 00:12:19,654
TO CREATE A PICTURE OF PHASE ONE

340
00:12:19,654 --> 00:12:21,690
TRIALS.  AND SO THOSE ANALYSES 

341
00:12:21,690 --> 00:12:23,291
SHOW THAT ABOUT 65% OF ALL 

342
00:12:23,291 --> 00:12:25,360
HEALTHY VOLUNTEERS ARE GOING TO 

343
00:12:25,360 --> 00:12:26,394
EXPERIENCE AT LEAST ONE ADVERSE 

344
00:12:26,394 --> 00:12:30,665
EVENT DURING A CLINICAL TRIAL.  

345
00:12:30,665 --> 00:12:32,200
THIS COULD BE SOMETHING VERY 

346
00:12:32,200 --> 00:12:35,570
MILD LIKE MAYBE A MILD HEADACHE,

347
00:12:35,570 --> 00:12:37,539
MAYBE GASTROINTESTINAL CHANGES 

348
00:12:37,539 --> 00:12:41,276
AND THINGS LIKE THAT AND THEY 

349
00:12:41,276 --> 00:12:42,077
TEND TO BE TRANSIENT AND THEIR 

350
00:12:42,077 --> 00:12:44,212
QUICK TO RESOLVE.  THAT SAID 

351
00:12:44,212 --> 00:12:47,249
ABOUT 1-4% OF ADVERSE EVENTS ARE

352
00:12:47,249 --> 00:12:48,116
SERIOUS.  AND I THINK PROBABLY 

353
00:12:48,116 --> 00:12:50,051
MANY OF YOU HAVE HEARD OF SOME 

354
00:12:50,051 --> 00:12:51,953
OF THE PHASE ONE CATASTROPHES 

355
00:12:51,953 --> 00:12:53,688
THAT HAVE HAPPENED SO THERE WAS 

356
00:12:53,688 --> 00:12:56,224
A DEATH AT HOP KINS IN 2001.  

357
00:12:56,224 --> 00:12:58,960
THERE WAS A DEATH AT LILY 

358
00:12:58,960 --> 00:13:05,467
TESTING FACILITY IN 2004. 

359
00:13:05,467 --> 00:13:08,203
PROBABLY THE CASE WE TALK ABOUT 

360
00:13:08,203 --> 00:13:09,104
THE MOST IS THE INJURY IN LONDON

361
00:13:09,104 --> 00:13:12,941
IN 2006.  THIS WAS WHEN A 

362
00:13:12,941 --> 00:13:13,975
BIOLOGIC WAS GIVEN AND THE 

363
00:13:13,975 --> 00:13:16,144
PARTICIPANT WHO IS RECEIVED THE 

364
00:13:16,144 --> 00:13:18,179
ACTIVE DRUG WENT INTO MULTIPLE 

365
00:13:18,179 --> 00:13:21,249
ORGAN FAILURE VERY QUICKLY AFTER

366
00:13:21,249 --> 00:13:21,683
RECEIVING THE DRUG. 

367
00:13:21,683 --> 00:13:22,317
AND IT RAISED QUESTIONS ABOUT 

368
00:13:22,317 --> 00:13:24,786
THE TIMING OF DOSING HEALTHY 

369
00:13:24,786 --> 00:13:26,454
VOLUNTEERS.  AND THEN MOST 

370
00:13:26,454 --> 00:13:29,391
RECENTLY THERE WAS A DEATH AT 

371
00:13:29,391 --> 00:13:34,129
THE BIO TRIAL FACILITY IN FRANCE

372
00:13:34,129 --> 00:13:37,065
IN 2016.  

373
00:13:37,065 --> 00:13:38,233
IT'S RARE THAT SOMEONE WILL DIE 

374
00:13:38,233 --> 00:13:39,801
FROM A PHASE ONE TRIAL BUT IT 

375
00:13:39,801 --> 00:13:42,437
DOES HAPPEN.  I BECAME REALLY 

376
00:13:42,437 --> 00:13:43,605
INTERESTED IN THE PHASE ONE 

377
00:13:43,605 --> 00:13:44,606
INDUSTRY WHEN I WAS DOING 

378
00:13:44,606 --> 00:13:46,274
ANOTHER PROJECT THAT WAS REALLY 

379
00:13:46,274 --> 00:13:48,443
LOOKING AT THE OUTSOURCING OF 

380
00:13:48,443 --> 00:13:50,111
PHARMACEUTICAL CLINICAL TRIALS 

381
00:13:50,111 --> 00:13:54,349
AWAY FROM ACADEMIC MEDICAL 

382
00:13:54,349 --> 00:13:55,016
CENTERS TO FOR-PROFIT COMPANIES 

383
00:13:55,016 --> 00:13:56,885
THAT WERE CONDUCTING THEM AND AS

384
00:13:56,885 --> 00:14:02,190
I WAS DOING THAT RESEARCH WHEN I

385
00:14:02,190 --> 00:14:05,493
STARTED TO SEE WAS ALL THESE 

386
00:14:05,493 --> 00:14:06,361
FACILITIES WERE BEING BUILT TO 

387
00:14:06,361 --> 00:14:07,963
DO TRIALS AND THAT WAS 

388
00:14:07,963 --> 00:14:09,798
FASCINATING TO ME BECAUSE IT WAS

389
00:14:09,798 --> 00:14:11,232
PART OF THIS OUTSOURCING THAT I 

390
00:14:11,232 --> 00:14:13,101
WAS SEEING BUT ALSO A SCALE 

391
00:14:13,101 --> 00:14:14,402
SHIFT THAT WAS PART OF IT.  A 

392
00:14:14,402 --> 00:14:16,605
LOT OF THE NEW FACILITIES BEING 

393
00:14:16,605 --> 00:14:20,208
BUILT WERE REALLY LARGE.  SO IF 

394
00:14:20,208 --> 00:14:21,610
YOU KIND OF THINK ABOUT MOST 

395
00:14:21,610 --> 00:14:24,312
RESEARCH UNITS OF THIS KIND THAT

396
00:14:24,312 --> 00:14:27,015
MIGHT BE AT AN ACADEMIC MEDICAL 

397
00:14:27,015 --> 00:14:28,483
CENTER THEY'RE PRETTY SMALL, 

398
00:14:28,483 --> 00:14:30,785
PROBABLY 12-16 BED UNITS BUT A 

399
00:14:30,785 --> 00:14:33,121
LOT OF THESE FACILITIES WERE 

400
00:14:33,121 --> 00:14:36,291
BUILDING 100-200 BED RESEARCH 

401
00:14:36,291 --> 00:14:37,559
UNITS.  THERE ARE TWO IN THE 

402
00:14:37,559 --> 00:14:41,930
U.S. THAT ARE 300 BED UNITS.  

403
00:14:41,930 --> 00:14:42,931
THESE ARE ACTUALLY BIGGER THAN 

404
00:14:42,931 --> 00:14:44,499
SOME COMMUNITY HOSPITALS.  IT 

405
00:14:44,499 --> 00:14:46,701
MADE ME WONDER WHO IS 

406
00:14:46,701 --> 00:14:49,270
PARTICIPATING IN THESE STUDIES, 

407
00:14:49,270 --> 00:14:51,106
HOW ARE THEY GETTING SO MANY 

408
00:14:51,106 --> 00:14:53,274
HEALTHY VOLUNTEER TO FILL THESE 

409
00:14:53,274 --> 00:14:55,276
FACILITIES SO I CONDUCTED 

410
00:14:55,276 --> 00:14:56,544
ETHNOGRAPHIC RESEARCH T 

411
00:14:56,544 --> 00:14:57,212
QUALITATIVE RESEARCH. 

412
00:14:57,212 --> 00:15:00,582
ON THESE FACILITIES.  AND I WENT

413
00:15:00,582 --> 00:15:02,384
TO SIX DIFFERENT FACILITIES IN 

414
00:15:02,384 --> 00:15:04,019
THE U.S. AND I REALLY WANTED TO 

415
00:15:04,019 --> 00:15:05,186
HAVE A VARIETY OF TYPES OF 

416
00:15:05,186 --> 00:15:07,322
RESEARCH SETTINGS SO I WENT TO 

417
00:15:07,322 --> 00:15:11,159
ONE ACADEMIC SITE AND FIVE 

418
00:15:11,159 --> 00:15:13,061
FOR-PROFIT SITES.  ONE OF THESE 

419
00:15:13,061 --> 00:15:14,829
WAS A PHARMACEUTICAL SITE.  TWO 

420
00:15:14,829 --> 00:15:16,564
WERE OWNED AND OPERATED BY 

421
00:15:16,564 --> 00:15:19,300
CONTRACT RESEARCH ORGANIZATIONS.

422
00:15:19,300 --> 00:15:20,869
WHICH HAVE KIND OF DIFFERENT 

423
00:15:20,869 --> 00:15:21,469
FUNCTION IN THE INDUSTRY AND 

424
00:15:21,469 --> 00:15:22,937
THEN TWO WERE JUST KIND OF 

425
00:15:22,937 --> 00:15:24,239
INDEPENDENTLY OWNED.  THEY 

426
00:15:24,239 --> 00:15:25,707
TALKED ABOUT THEMSELVES AS MOM 

427
00:15:25,707 --> 00:15:31,346
AND POP RESEARCH OPERATIONS.  

428
00:15:31,346 --> 00:15:37,452
AND I ALSO VARIED IT BY WHERE IT

429
00:15:37,452 --> 00:15:39,721
WAS IN THE COUNTRY.  I OBSERVED 

430
00:15:39,721 --> 00:15:40,955
PROCEDURES AND SAT IN ON 

431
00:15:40,955 --> 00:15:45,960
MEETINGS AND I RESEARCHED STAFF 

432
00:15:45,960 --> 00:15:48,329
AND VOLUNTEERS.  SO THE THING 

433
00:15:48,329 --> 00:15:49,264
THAT SURPRISE ME THE MOST WAS 

434
00:15:49,264 --> 00:15:51,566
THE DEMOGRAPHICS OF HEALTHY 

435
00:15:51,566 --> 00:15:53,735
VOLUNTEERS WHEN I WENT INTO THIS

436
00:15:53,735 --> 00:15:55,603
RESEARCH I KIND OF EXPECT, I 

437
00:15:55,603 --> 00:15:56,805
THINK THERE WAS THIS NARRATIVE 

438
00:15:56,805 --> 00:15:58,506
OF OH, IT'S YOUNG, WHITE, 

439
00:15:58,506 --> 00:15:59,307
COLLEGE STUDENTS THAT ARE 

440
00:15:59,307 --> 00:16:02,210
ENROLLING IN THESE STUDIES 

441
00:16:02,210 --> 00:16:03,344
BECAUSE THEY NEED SOME BEER 

442
00:16:03,344 --> 00:16:04,913
MONEY AND THAT WAS SO FAR FROM 

443
00:16:04,913 --> 00:16:06,281
WHAT I FOUND WHEN I ACTUALLY 

444
00:16:06,281 --> 00:16:08,783
START DOING THIS RESEARCH THAT 

445
00:16:08,783 --> 00:16:11,453
MOST OF THE PARTICIPANTS WERE 

446
00:16:11,453 --> 00:16:12,821
MALE AND THAT -- I REFERENCED 

447
00:16:12,821 --> 00:16:14,989
EARLIER THAT THE NONHUMAN ANIMAL

448
00:16:14,989 --> 00:16:19,294
STUDIES AREN'T COMPLETE A LOT OF

449
00:16:19,294 --> 00:16:21,763
TIMES WHEN THESE STUDIES BEGIN 

450
00:16:21,763 --> 00:16:23,765
THERE ARE A LOT OF RESTRICTIONS 

451
00:16:23,765 --> 00:16:25,133
ON WOMEN OF CHILD BEARING 

452
00:16:25,133 --> 00:16:28,470
POTENTIAL BUT IT WAS 75-80% MEN 

453
00:16:28,470 --> 00:16:31,339
IN THESE FACILITIES AND IT WAS A

454
00:16:31,339 --> 00:16:32,207
DISPROPORTIONATE NUMBER OF 

455
00:16:32,207 --> 00:16:33,908
MINORITY PARTICIPANTS SO IN THE 

456
00:16:33,908 --> 00:16:35,510
EAST AND THE MIDWEST IT WAS 

457
00:16:35,510 --> 00:16:37,278
MOSTLY BLACK OR AFRICAN AMERICAN

458
00:16:37,278 --> 00:16:38,913
PARTICIPANTS AND IN THE 

459
00:16:38,913 --> 00:16:42,250
SOUTHWEST IT WAS MOSTLY LATINO 

460
00:16:42,250 --> 00:16:42,951
PARTICIPANTS.  AND MOST 

461
00:16:42,951 --> 00:16:45,019
PARTICIPANTS WERE BETWEEN THE 

462
00:16:45,019 --> 00:16:48,723
AGES OF 20 AND 45 BUT IF WE LOOK

463
00:16:48,723 --> 00:16:52,594
AT WELL HOW OLD WERE THEY IN 

464
00:16:52,594 --> 00:16:54,929
THAT BRACKET MOST WERE 30S OR 

465
00:16:54,929 --> 00:16:55,764
EARLY 40S.  THEY WEREN'T AS 

466
00:16:55,764 --> 00:16:57,766
YOUNG AS I EXPECTED AND MOST 

467
00:16:57,766 --> 00:16:58,533
WERE LOWER INCOME, LOW 

468
00:16:58,533 --> 00:17:01,236
EDUCATIONAL ATTAINMENT.  AND 

469
00:17:01,236 --> 00:17:02,871
THEY WERE PEOPLE WHO HAD AN 

470
00:17:02,871 --> 00:17:04,072
UNSTABLE EMPLOYMENT HISTORY AND 

471
00:17:04,072 --> 00:17:05,507
I ALSO FOUND THAT MANY ACTUALLY 

472
00:17:05,507 --> 00:17:07,709
HAD A HISTORY OF INCARCERATION. 

473
00:17:07,709 --> 00:17:10,078
AND MANY WERE IMMIGRANTS.  SOME 

474
00:17:10,078 --> 00:17:12,046
OF WHOM WERE NOT LEGALLY 

475
00:17:12,046 --> 00:17:14,182
PERMITTED TO WORK IN THE U.S. SO

476
00:17:14,182 --> 00:17:15,884
FOR BOTH OF THESE LAST 

477
00:17:15,884 --> 00:17:17,752
CATEGORIES WHAT I FOUND IS THIS 

478
00:17:17,752 --> 00:17:19,120
BECAME A REALLY IMPORTANT 

479
00:17:19,120 --> 00:17:20,255
ECONOMIC OPPORTUNITY TO THOSE 

480
00:17:20,255 --> 00:17:21,923
GROUPS WHO MIGHT FACE 

481
00:17:21,923 --> 00:17:25,059
DISCRIMINATION.  IN THE TYPICAL 

482
00:17:25,059 --> 00:17:34,068
JOB MARKET.  SO THESE IF A  -- 

483
00:17:34,068 --> 00:17:35,336
FACILITIES DIDN'T ASK IF THEY 

484
00:17:35,336 --> 00:17:37,806
HAD A CRIMINAL RECORD OR THEIR 

485
00:17:37,806 --> 00:17:38,807
IMMIGRATION STATUS. 

486
00:17:38,807 --> 00:17:41,009
FOR ME WHEN WE THINK ABOUT HOW 

487
00:17:41,009 --> 00:17:42,644
IMPORTANT IT IS TO DIVERSIFY 

488
00:17:42,644 --> 00:17:49,050
MEDICAL RESEARCH AND TO GET 

489
00:17:49,050 --> 00:17:49,984
UNDERREPRES

490
00:17:49,984 --> 00:17:51,886
UNDERREPRES

491
00:17:51,886 --> 00:17:56,191
UNDERREPRESENTED GROUPS INTO 

492
00:17:56,191 --> 00:17:57,492
RESEARCH.  IT MADE ME ASK WHY 

493
00:17:57,492 --> 00:17:59,260
DOESN'T THIS HIGHER PERCENTAGE 

494
00:17:59,260 --> 00:18:00,929
OF RACIAL AND ETHNIC MINORITIES 

495
00:18:00,929 --> 00:18:03,164
FEEL LIKE A SUCCESS?  AND SO IN 

496
00:18:03,164 --> 00:18:05,333
MY BOOK THAT I PUBLISHED IN 2020

497
00:18:05,333 --> 00:18:08,203
ADVERSE EVENTS, I REALLY TRIED 

498
00:18:08,203 --> 00:18:10,572
TO KIND OF UNPACK THIS PARADOX 

499
00:18:10,572 --> 00:18:13,274
OF MINORITIES PARTICIPATING IN 

500
00:18:13,274 --> 00:18:15,210
THE RISKIEST STUDIES WITH NO 

501
00:18:15,210 --> 00:18:16,945
DIRECT BENEFIT TO KIND OF FIGURE

502
00:18:16,945 --> 00:18:18,279
OUT HOW TO ANALYZE THIS, HOW TO 

503
00:18:18,279 --> 00:18:20,014
THINK ABOUT THIS FROM AN ETHICAL

504
00:18:20,014 --> 00:18:20,949
PERSPECTIVE AND SO MY ARGUMENT 

505
00:18:20,949 --> 00:18:23,151
IN THE BOOK IS THAT RACIAL AND 

506
00:18:23,151 --> 00:18:25,019
ECONOMIC INEQUALITIES IN THE 

507
00:18:25,019 --> 00:18:27,322
U.S. CREATE A MARKET OF HEALTHY 

508
00:18:27,322 --> 00:18:30,258
VOLUNTEERS FOR PHASE ONE TRIALS 

509
00:18:30,258 --> 00:18:32,193
SO THAT'S I THINK THE PIECE THAT

510
00:18:32,193 --> 00:18:34,562
MAKES THIS SO UNCOMFORTABLE THAT

511
00:18:34,562 --> 00:18:38,266
REALLY IT IS A SYSTEM THAT IS 

512
00:18:38,266 --> 00:18:40,401
EXPLOITING POOR PEOPLE OF COLOR 

513
00:18:40,401 --> 00:18:41,703
ESSENTIALLY SO THAT'S WHAT I'M 

514
00:18:41,703 --> 00:18:43,338
GOING TO MOSTLY FOCUS ON TODAY 

515
00:18:43,338 --> 00:18:45,940
THE BOOK ALSO TALKS ABOUT HOW 

516
00:18:45,940 --> 00:18:47,609
THERE ARE VALIDITY CONCERNS THAT

517
00:18:47,609 --> 00:18:49,444
ARE REALLY INHERENT TO HOW THE 

518
00:18:49,444 --> 00:18:50,445
PHASE ONE INDUSTRY WORKS AND 

519
00:18:50,445 --> 00:18:52,380
THAT ENSURES THAT ANY DRUGS 

520
00:18:52,380 --> 00:18:53,581
APPEAR SAFER THAN THEY ARE AND 

521
00:18:53,581 --> 00:18:55,016
IF PEOPLE HAVE QUESTIONS ABOUT 

522
00:18:55,016 --> 00:18:56,718
THAT I AM MORE TO TALK ABOUT THE

523
00:18:56,718 --> 00:18:58,419
VALIDITY ISSUES AT THE END SO I 

524
00:18:58,419 --> 00:19:01,756
WANT TO GIVE YOU A SENSE OF HOW 

525
00:19:01,756 --> 00:19:02,557
HEALTHY VOLUNTEERS ACTUALLY TALK

526
00:19:02,557 --> 00:19:03,591
ABOUT WHAT THEY'RE DOING, HOW 

527
00:19:03,591 --> 00:19:05,760
THEY'RE THINKING ABOUT WHAT 

528
00:19:05,760 --> 00:19:07,028
THEY'RE GOING AND THEY REALLY 

529
00:19:07,028 --> 00:19:08,997
FOCUS ON THEIR FINANCIAL 

530
00:19:08,997 --> 00:19:09,764
MOTIVATIONS SO, FOR INSTANCE, I 

531
00:19:09,764 --> 00:19:14,702
SHOULD SAY ON ALL OF THESE NAMES

532
00:19:14,702 --> 00:19:19,674
ARE PSEUDONYMS LOUIS TOLD ME I 

533
00:19:19,674 --> 00:19:20,341
WANTED TO MAKE SOME MONEY.  

534
00:19:20,341 --> 00:19:26,180
(READING).  AND PEOPLE REALLY 

535
00:19:26,180 --> 00:19:29,517
DID FOCUS ON SORT OF THE 

536
00:19:29,517 --> 00:19:31,286
DESPERATION THAT DROVE THEM TO 

537
00:19:31,286 --> 00:19:31,886
PARTICIPATE.  ESPECIALLY THE 

538
00:19:31,886 --> 00:19:32,887
FIRST TIME I WOULD SAY.  THAT 

539
00:19:32,887 --> 00:19:34,689
WAS REALLY PART OF THEIR 

540
00:19:34,689 --> 00:19:36,557
NARRATIVE OF WHY THEY KIND OF 

541
00:19:36,557 --> 00:19:39,327
DECIDED TO DO SOMETHING LIKE 

542
00:19:39,327 --> 00:19:41,596
THIS.  AND MANNY'S STORY REALLY 

543
00:19:41,596 --> 00:19:44,198
STRUCK ME BECAUSE HE FOUND OUT 

544
00:19:44,198 --> 00:19:46,868
ABOUT PARTICIPATING WHEN HE WAS 

545
00:19:46,868 --> 00:19:48,670
AT A PAROLE HEARING AND THERE 

546
00:19:48,670 --> 00:19:50,905
WERE FLYERS ON THE WALL 

547
00:19:50,905 --> 00:19:51,673
ADVERTISING CLINICAL TRIALS SO 

548
00:19:51,673 --> 00:19:55,209
HE HADN'T EVEN KNOWN ABOUT IT 

549
00:19:55,209 --> 00:19:58,446
BEFORE THAT AND SO HE -- LEA

550
00:19:58,446 --> 00:20:01,215
LEARNING ABOUT IT AND GRANTED 

551
00:20:01,215 --> 00:20:02,717
PAROLE HE FELT IT WAS SOMETHING 

552
00:20:02,717 --> 00:20:04,185
HE HAD TO DO.  HE SAID WHERE 

553
00:20:04,185 --> 00:20:06,321
ELSE AM AN I GOING TO GET IT.  

554
00:20:06,321 --> 00:20:07,789
MEANING THE MONEY FROM THE 

555
00:20:07,789 --> 00:20:08,323
STUDY.  CAR'S BROKE DOWN 

556
00:20:08,323 --> 00:20:18,800
(READING).  MANNY WENT TO A 

557
00:20:23,972 --> 00:20:25,807
STATE WHERE HE HAD TO PAY FOR 

558
00:20:25,807 --> 00:20:29,944
THE COST OF HIS OWN SUPERVISION.

559
00:20:29,944 --> 00:20:31,579
HE HAD EXTRA FINANCIAL 

560
00:20:31,579 --> 00:20:34,248
PRESSURES.  ANOTHER EXAMPLE 

561
00:20:34,248 --> 00:20:36,484
COMES FROM MIERA SOL WHO SAID 

562
00:20:36,484 --> 00:20:38,386
WHAT MADE ME DECIDE TO ENROLL, 

563
00:20:38,386 --> 00:20:40,088
TRULY HARDSHIP, THE PEOPLE THAT 

564
00:20:40,088 --> 00:20:42,390
GO TO THESE CLINICS OFTEN 

565
00:20:42,390 --> 00:20:44,792
THEY'RE PEOPLE THAT BECAUSE OF 

566
00:20:44,792 --> 00:20:56,237
LACK OF WORK WE (RWORK WE (READ 

567
00:21:01,542 --> 00:21:05,246
EMPHASIZING THIS IDEA THAT IT'S 

568
00:21:05,246 --> 00:21:06,814
NOT SOMETHING YOU WANT TO DO 

569
00:21:06,814 --> 00:21:07,582
UNLESS YOU HAD TO DO IT AND THIS

570
00:21:07,582 --> 00:21:08,850
WAS DIFFERENT FROM A LOT OF THE 

571
00:21:08,850 --> 00:21:10,251
PARTICIPANTS WHO WERE WHITE THAT

572
00:21:10,251 --> 00:21:11,753
I INTERVIEWED.  THEY TENDED TO 

573
00:21:11,753 --> 00:21:15,857
SEE IT AS A TEMPORARY THING.  

574
00:21:15,857 --> 00:21:17,225
SOMETHING THAT THEY IMAGINED 

575
00:21:17,225 --> 00:21:18,826
THEY WOULD DO IT ONCE AND THEY 

576
00:21:18,826 --> 00:21:20,461
WOULD NEVER HAVE TO DO IT AGAIN 

577
00:21:20,461 --> 00:21:22,230
SO FOR INSTANCE, TED SAID I 

578
00:21:22,230 --> 00:21:22,830
SUPPOSE IF I DON'T FIND WORK 

579
00:21:22,830 --> 00:21:31,873
RIGHT AWAY (READING).  SO THIS 

580
00:21:31,873 --> 00:21:33,241
BELIEF THAT IT WAS GOING TO BE, 

581
00:21:33,241 --> 00:21:34,709
YOU KNOW, SOMETHING THAT WOULD 

582
00:21:34,709 --> 00:21:35,977
KIND OF GET THEM OVER THE HUMP, 

583
00:21:35,977 --> 00:21:37,145
HELP THEM PAY THEIR RENT OR 

584
00:21:37,145 --> 00:21:38,646
MORTGAGE OR SOMETHING LIKE THAT 

585
00:21:38,646 --> 00:21:40,248
AND THEN THEY WOULD BE BACK ON 

586
00:21:40,248 --> 00:21:41,883
TRACK WHEREAS A LOT OF PEOPLE OF

587
00:21:41,883 --> 00:21:42,784
COLOR DIDN'T HAVE THAT 

588
00:21:42,784 --> 00:21:44,085
NARRATIVE.  THEY REALLY TALKED 

589
00:21:44,085 --> 00:21:46,754
ABOUT HOW CLINICAL TRIALS BECAME

590
00:21:46,754 --> 00:21:50,058
PART OF THEIR STRATEGY TO DEAL 

591
00:21:50,058 --> 00:21:52,093
WITH THE PERSISTENT FINANCIAL 

592
00:21:52,093 --> 00:21:53,795
PRECARITY THAT THEY WERE 

593
00:21:53,795 --> 00:21:54,695
EXPERIENCING SO FOR INSTANCE 

594
00:21:54,695 --> 00:21:57,031
WESLEY SAID I THINK I WILL KEEP 

595
00:21:57,031 --> 00:21:59,300
DOING THEM UNTIL I GET OLD 

596
00:21:59,300 --> 00:22:09,844
(READING).  SO DEFINITELY THIS 

597
00:22:18,352 --> 00:22:20,388
WORRY OF HOW DIFFICULT IT WAS TO

598
00:22:20,388 --> 00:22:23,357
GET AHEAD.  FOR A LOT OF THE 

599
00:22:23,357 --> 00:22:26,627
PEOPLE THAT I MET.  AT THE SAME 

600
00:22:26,627 --> 00:22:27,328
TIME, SO THERE WERE PARTICIPANT 

601
00:22:27,328 --> 00:22:28,763
WHO IS WERE DOING IT JUST KIND 

602
00:22:28,763 --> 00:22:31,699
OF AS A SURVIVAL STRATEGY BUT 

603
00:22:31,699 --> 00:22:35,269
THEN THERE WERE OTHER 

604
00:22:35,269 --> 00:22:38,072
PARTICIPANTS THAT SAW YOU COULD 

605
00:22:38,072 --> 00:22:38,806
MAKE A LIFESTYLE OUT OF CLINICAL

606
00:22:38,806 --> 00:22:41,142
TRIALS AND THEY TALKED ABOUT 

607
00:22:41,142 --> 00:22:43,277
THEMSELVESES NOT AS HUMAN GUINEA

608
00:22:43,277 --> 00:22:50,084
PIGS BUT HUMAN LAB RATS.  

609
00:22:50,084 --> 00:22:51,018
BENNETT TALKS ABOUT THIS.  

610
00:22:51,018 --> 00:23:01,529
(READING).  WHEN BENNETT WAS 

611
00:23:36,831 --> 00:23:39,934
TALKING ABOUT MCMCIT WASN'T HYPE

612
00:23:39,934 --> 00:23:42,403
CALENDAR HE HAD ACTUALLY WORKED 

613
00:23:42,403 --> 00:23:44,872
AT MCDONALD'S SO HE WAS TALKING 

614
00:23:44,872 --> 00:23:47,275
ABOUT THE LIFE HE COULD LEAD IN 

615
00:23:47,275 --> 00:23:49,377
THE HOURLY BASED VERSUS CLINICAL

616
00:23:49,377 --> 00:23:50,244
STUDIES.  AT THE SAME TIME WE 

617
00:23:50,244 --> 00:23:53,080
DID SEE SOME DRAWBACKS HE SAID 

618
00:23:53,080 --> 00:23:54,782
THE THING THAT THE LAB RAT THING

619
00:23:54,782 --> 00:23:57,351
LACKS IS CONSISTENCY.  IF MY 

620
00:23:57,351 --> 00:24:00,154
RENT IS DUE AND THE STUDY GETS 

621
00:24:00,154 --> 00:24:02,256
CANCELED MY RENT GETS CANCELED 

622
00:24:02,256 --> 00:24:12,800
(READING).  AND THEN THE IDEA OF

623
00:24:18,673 --> 00:24:21,676
COMPETITION WAS REALLY A BIG 

624
00:24:21,676 --> 00:24:24,078
PART OF THE CLIMATE OR THE 

625
00:24:24,078 --> 00:24:25,346
CULTURE OF PARTICIPATION THAT 

626
00:24:25,346 --> 00:24:27,281
PARTICIPANTS REALLY DID WORRY 

627
00:24:27,281 --> 00:24:28,749
ABOUT BEING ABLE TO GET IN 

628
00:24:28,749 --> 00:24:30,685
STUDIES WHEN THEY WANTED IT AND 

629
00:24:30,685 --> 00:24:32,253
I WILL COME BACK TO THAT THEME 

630
00:24:32,253 --> 00:24:34,288
IN A LITTLE BIT BUT FIRST I JUST

631
00:24:34,288 --> 00:24:37,325
WANTED TO, SO IN A SUBSEQUENT 

632
00:24:37,325 --> 00:24:41,596
STUDY THAT MY TEAM AND I 

633
00:24:41,596 --> 00:24:46,234
CONDUCTED WE DID LONGITUDINAL 

634
00:24:46,234 --> 00:24:48,669
WORK WITH VOLUNTEERS TO TALK 

635
00:24:48,669 --> 00:24:50,238
ABOUT THE STUDIES THEY ENROLLED 

636
00:24:50,238 --> 00:24:52,907
WITH IN A THREE YEAR PERIOD SO 

637
00:24:52,907 --> 00:24:53,774
WE TALKED ABOUT HOW MUCH 

638
00:24:53,774 --> 00:24:54,909
CLINICAL TRIALS WERE PAID AND 

639
00:24:54,909 --> 00:24:56,077
HOW MUCH PEOPLE WERE EARNING SO 

640
00:24:56,077 --> 00:24:58,012
THIS GIVES YOU A SENSE OF HOW 

641
00:24:58,012 --> 00:24:59,280
MUCH THE STUDY THE PAID DURING 

642
00:24:59,280 --> 00:25:02,250
THAT TIMEFRAME AND YOU CAN SEE 

643
00:25:02,250 --> 00:25:06,254
MOST OF THEM PAID UNDER 6,000 

644
00:25:06,254 --> 00:25:09,790
DOLLARS BUT THERE WERE SOME THAT

645
00:25:09,790 --> 00:25:13,995
QUITE SUBSTANTIAL IN PAYMENT.  I

646
00:25:13,995 --> 00:25:16,264
ALSO JUST WANTED TO GIVE YOU 

647
00:25:16,264 --> 00:25:17,398
SOME DATA ABOUT HOW MUCH PEOPLE 

648
00:25:17,398 --> 00:25:19,267
EARNED IN A YEAR SO WHAT YOU 

649
00:25:19,267 --> 00:25:22,703
COULD SEE IS THAT THE AVERAGE 

650
00:25:22,703 --> 00:25:24,338
PARTICIPANT WAS SCREENING FOR 

651
00:25:24,338 --> 00:25:27,942
ABOUT THREE STUDIES A YEAR AND 

652
00:25:27,942 --> 00:25:30,177
PARTICIPATING IN ONE OR TWO.  

653
00:25:30,177 --> 00:25:32,246
AND EARNING ABOUT 4,000 DOLLARS.

654
00:25:32,246 --> 00:25:35,016
SO PEOPLE WERE CERTAINLY NOT 

655
00:25:35,016 --> 00:25:37,385
GETTING RICH ON THIS.  BUT THIS 

656
00:25:37,385 --> 00:25:39,253
IS KIND OF AN AVERAGE ACROSS 

657
00:25:39,253 --> 00:25:41,222
PEOPLE.  ONE OF THINGS I WANTED 

658
00:25:41,222 --> 00:25:42,990
TO POINT OUT TOO.  YOU COULD SEE

659
00:25:42,990 --> 00:25:44,859
THERE WAS A THREE YEAR STUDY WE 

660
00:25:44,859 --> 00:25:47,662
STARTED WITH 113 PEOPLE IN -- 

661
00:25:47,662 --> 00:25:50,231
SORRY, 131 PEOPLE IN OUR STUDY 

662
00:25:50,231 --> 00:25:54,201
BUT IN THE FIRST YEAR 113 OF 

663
00:25:54,201 --> 00:25:56,037
THEM CONTINUED TO SCREEN FOR 

664
00:25:56,037 --> 00:25:58,939
TRIALS SO SOME STOPPED 

665
00:25:58,939 --> 00:26:01,242
BASICALLY.  14% STOPPED.  BUT 

666
00:26:01,242 --> 00:26:02,910
YOU CAN SEE THE NUMBER GOES DOWN

667
00:26:02,910 --> 00:26:04,478
EVERY YEAR SO THERE ARE PEOPLE 

668
00:26:04,478 --> 00:26:06,247
WHO ARE PARTICIPATING REGULARLY 

669
00:26:06,247 --> 00:26:07,281
BUT WE ACTUALLY SAW THAT THE 

670
00:26:07,281 --> 00:26:09,550
NUMBER WAS DECREASING AND ONE OF

671
00:26:09,550 --> 00:26:13,154
THE REASONS FOR THIS IS PEOPLE 

672
00:26:13,154 --> 00:26:16,157
FELT DISILLUSIONED WITH THE FACT

673
00:26:16,157 --> 00:26:18,125
THAT THEY WEREN'T EARNING AS 

674
00:26:18,125 --> 00:26:20,194
MUCH MONEY AS THEY THOUGHT THEY 

675
00:26:20,194 --> 00:26:23,464
MIGHT BE ABLE TO.  THE NOTE ON 

676
00:26:23,464 --> 00:26:24,165
COMPENSATION, PARTICIPANTS 

677
00:26:24,165 --> 00:26:26,467
REALLY HAVE CRITICAL STANCES ON 

678
00:26:26,467 --> 00:26:27,935
THE INDUSTRY.  SO SHIRLEY SAID 

679
00:26:27,935 --> 00:26:29,804
THE DRUG COMPANIES, THE ACADEMIC

680
00:26:29,804 --> 00:26:30,938
INSTITUTIONS OR WHATEVER IT IS, 

681
00:26:30,938 --> 00:26:34,108
THIS HUGE WHEEL THAT TURNS, YOU 

682
00:26:34,108 --> 00:26:35,409
KNOW, TO POWER CLINICAL STUDIES,

683
00:26:35,409 --> 00:26:45,886
(READING).  SO THERE'S REAL 

684
00:26:52,426 --> 00:26:53,160
FEELING THAT DESPITE HOW WE 

685
00:26:53,160 --> 00:26:54,395
THINK THESE REALLY PAY QUITE A 

686
00:26:54,395 --> 00:26:56,364
LOT, A SUBSTANTIAL PAYMENT A LOT

687
00:26:56,364 --> 00:26:59,300
OF TIMES THE PARTICIPANTS FELT 

688
00:26:59,300 --> 00:27:02,970
IT WAS NOT AS GENEROUS AS IT 

689
00:27:02,970 --> 00:27:06,540
MIGHT SEEM.  SO I WANT TO GIVE 

690
00:27:06,540 --> 00:27:10,611
YOU A LITTLE BIT OF WHAT THE 

691
00:27:10,611 --> 00:27:13,013
RISKS THEY FEEL.  AND HOW THEY 

692
00:27:13,013 --> 00:27:14,248
ACKNOWLEDGE AND RATIONALIZE RISK

693
00:27:14,248 --> 00:27:16,984
AS WELL AS THE RISK OF NOT 

694
00:27:16,984 --> 00:27:18,719
QUALIFYING, PARTICIPANTS 

695
00:27:18,719 --> 00:27:20,721
DEFINITELY ARE AWARE OF WHAT THE

696
00:27:20,721 --> 00:27:22,390
STUDIES REQUIRE, THEY ARE 

697
00:27:22,390 --> 00:27:23,824
READING THE CONSENT FORMS, SOME 

698
00:27:23,824 --> 00:27:25,659
OF THESE CLINICS ACTUALLY QUIZ 

699
00:27:25,659 --> 00:27:26,961
THEM ON THE CONTENT OF THE 

700
00:27:26,961 --> 00:27:29,163
CONSENT FORMS SO THEY KNOW 

701
00:27:29,163 --> 00:27:30,164
THERE'S RISK.  THIS PARTICIPANT 

702
00:27:30,164 --> 00:27:40,608
SAID, (READING).  SO THIS 

703
00:27:45,579 --> 00:27:48,015
FEELING THAT THERE IS RISK, IT 

704
00:27:48,015 --> 00:27:49,049
IS SOMETHING THAT COULD HURT YOU

705
00:27:49,049 --> 00:27:52,787
IN THE LONG-TERM IF YOU ARE NOT 

706
00:27:52,787 --> 00:27:55,222
CAREFUL.  JULIA SAID I TREAT 

707
00:27:55,222 --> 00:27:56,457
EVERY DRUG OR EVERY PROCEDURE 

708
00:27:56,457 --> 00:27:58,459
DIFFERENTLY I'M VERY CONCERNED 

709
00:27:58,459 --> 00:27:59,894
ABOUT EVERY SIDE EFFECT JUST AS 

710
00:27:59,894 --> 00:28:01,195
I WAS THE FIRST TIME BECAUSE 

711
00:28:01,195 --> 00:28:02,129
THIS MIGHT BE THE ONE, IT'S A 

712
00:28:02,129 --> 00:28:04,398
RISK THAT YOU'RE TAKING, THIS IS

713
00:28:04,398 --> 00:28:08,102
YOUR LIFE AND HEALTH AT STAKE.  

714
00:28:08,102 --> 00:28:08,736
AT THE SAME TIME, PARTICIPANTS 

715
00:28:08,736 --> 00:28:09,904
REALLY RATIONALIZE THE RISK.  

716
00:28:09,904 --> 00:28:11,305
THEY ACKNOWLEDGE THAT THE RISK 

717
00:28:11,305 --> 00:28:15,109
WAS OUT THERE BUT THEY ALSO 

718
00:28:15,109 --> 00:28:16,644
TENDED TO BELIEVE THEY WEREN'T 

719
00:28:16,644 --> 00:28:17,778
GOING TO BE HARMED INDIVIDUALLY 

720
00:28:17,778 --> 00:28:18,779
SO THIS PARTICIPATE SAID, 

721
00:28:18,779 --> 00:28:20,548
NORMALLY THEY SORT OF TALK ABOUT

722
00:28:20,548 --> 00:28:23,284
HOW LIKE WE TEST THESE DRUGS 

723
00:28:23,284 --> 00:28:33,828
(READING).  ANOTHER PARTICIPANT 

724
00:28:37,798 --> 00:28:39,266
TALKED ABOUT HIS OWN HEALTH AND 

725
00:28:39,266 --> 00:28:40,901
YOUTH AND SAID THE BEST TIME TO 

726
00:28:40,901 --> 00:28:43,270
DO IT IS WHEN YOU'RE YOUNG AND 

727
00:28:43,270 --> 00:28:45,840
YOUR BODY HAS A CHANCE TO REPAIR

728
00:28:45,840 --> 00:28:47,241
ITSELF.  WHEN YOU'RE OLD THERE'S

729
00:28:47,241 --> 00:28:50,377
NOT MUCH LEFT IN THE TANK SO I 

730
00:28:50,377 --> 00:28:54,482
THINK (READING).  AND THIS 

731
00:28:54,482 --> 00:28:56,851
ACTUALLY PARALLELS WHAT I WAS 

732
00:28:56,851 --> 00:28:57,885
SAYING ABOUT THERE BEING 

733
00:28:57,885 --> 00:28:59,587
POTENTIALLY LESS RISK TO HEALTHY

734
00:28:59,587 --> 00:29:01,822
VOLUNTEERS BECAUSE THEY'RE 

735
00:29:01,822 --> 00:29:04,658
HEALTHY SO TROY HAS SORT OF 

736
00:29:04,658 --> 00:29:07,228
EMBODIED THAT IDEA HERE.  A LOT 

737
00:29:07,228 --> 00:29:09,296
OF THE PARTICIPANTS, WE TALK 

738
00:29:09,296 --> 00:29:10,965
ABOUT TRUST AND DISTRUST OF 

739
00:29:10,965 --> 00:29:11,966
RESEARCH BUT A LOT OF THE 

740
00:29:11,966 --> 00:29:13,734
PARTICIPANTS WHO ARE IN THESE 

741
00:29:13,734 --> 00:29:14,835
STUDIES ACTUALLY HAVE A LOT OF 

742
00:29:14,835 --> 00:29:18,038
TRUST IN THE CLINICS AND IN THE 

743
00:29:18,038 --> 00:29:23,277
PROCESS.  SO AR NELL SAID I'M 

744
00:29:23,277 --> 00:29:25,746
TRUST 

745
00:29:25,746 --> 00:29:28,282
TRUSTING THE IRB, HE WASN'T SURE

746
00:29:28,282 --> 00:29:38,425
WHAT THAT IS (READING).  HOOIB R

747
00:29:38,425 --> 00:29:41,295
HERE HE WAS TALKING ABOUT IF NEW

748
00:29:41,295 --> 00:29:42,329
RISKS EMERGE THEY HAVE TO GIVE 

749
00:29:42,329 --> 00:29:44,265
NEW CONCEPT FORMS AND THEY HAVE 

750
00:29:44,265 --> 00:29:45,966
A PROCESS OF INFORMING 

751
00:29:45,966 --> 00:29:47,268
PARTICIPANTS IN THIS PROCESS 

752
00:29:47,268 --> 00:29:48,802
THEY'RE OPERATING ABOVE BOARD, 

753
00:29:48,802 --> 00:29:50,037
CAN I TRUST THAT THEY'RE REALLY 

754
00:29:50,037 --> 00:29:51,305
TELLING US THE INFORMATION THAT 

755
00:29:51,305 --> 00:29:53,173
I NEED TO HAVE.  HE SAID I KIND 

756
00:29:53,173 --> 00:29:55,075
OF GO IN WITH A SENSE OF 

757
00:29:55,075 --> 00:29:56,277
SECURITY THAT EVERYBODY'S DOING 

758
00:29:56,277 --> 00:30:01,482
WHAT THEY'RE SUPPOSED TO DO.  SO

759
00:30:01,482 --> 00:30:02,850
ONE OF THE THINGS THAT'S 

760
00:30:02,850 --> 00:30:04,685
INTERESTING IS WHEN I TALK TO 

761
00:30:04,685 --> 00:30:05,419
PARTICIPANTS ABOUT RISK THEY 

762
00:30:05,419 --> 00:30:07,221
DIDN'T ANSWER THE WAY I 

763
00:30:07,221 --> 00:30:08,255
EXPECTED.  THEY WERE NOT TALKING

764
00:30:08,255 --> 00:30:09,990
ABOUT THE RISK OF A CLINICAL 

765
00:30:09,990 --> 00:30:13,093
TRIAL THEY WERE TALKING ABOUT 

766
00:30:13,093 --> 00:30:18,866
THE RISK OF NOT QUALIFYI IING F 

767
00:30:18,866 --> 00:30:19,934
STUDIES.  FOR THEM IT WAS THE 

768
00:30:19,934 --> 00:30:21,635
RISK TO NOT BE INVITED TO 

769
00:30:21,635 --> 00:30:24,738
PARTICIPATE SO I THINK THE SENSE

770
00:30:24,738 --> 00:30:26,407
OF RISK REALLY CAME FROM EITHER 

771
00:30:26,407 --> 00:30:28,676
THE COMPETITION THAT WAS OUT 

772
00:30:28,676 --> 00:30:29,643
THERE BUT PROBABLY MORE OFTEN 

773
00:30:29,643 --> 00:30:31,312
FROM ACTUALLY FAILING A 

774
00:30:31,312 --> 00:30:32,246
SCREENING.  SO FROM THIS PROCESS

775
00:30:32,246 --> 00:30:34,214
OF SAYING, WELL, I'M A HEALTHY 

776
00:30:34,214 --> 00:30:36,250
PERSON, I'M GOING TO GO IN AND 

777
00:30:36,250 --> 00:30:38,586
THEN FINDING OUT THAT SOMETHING 

778
00:30:38,586 --> 00:30:39,920
WAS WRONG IN THEIR BLOODWORK OR 

779
00:30:39,920 --> 00:30:40,688
SOMETHING AND DIDN'T ACTUALLY 

780
00:30:40,688 --> 00:30:43,023
MAKE IT INTO STUDIES. 

781
00:30:43,023 --> 00:30:45,960
SO THE CONSEQUENCE OF THIS IS 

782
00:30:45,960 --> 00:30:48,195
THEY START TO THINK OF STUDIES 

783
00:30:48,195 --> 00:30:49,263
DIFFERENTLY AND PICK THEM 

784
00:30:49,263 --> 00:30:49,897
CAREFULLY FOR INSTANCE WHEN I 

785
00:30:49,897 --> 00:30:52,232
WAS AT ONE OF THE FACILITIES IN 

786
00:30:52,232 --> 00:30:54,068
THE NORTHEAST THEY WERE 

787
00:30:54,068 --> 00:30:55,869
SCREENING FOR A HEP C TRIAL AND 

788
00:30:55,869 --> 00:30:57,972
IT WAS A DOSE ESCALATION STUDY 

789
00:30:57,972 --> 00:30:59,840
AND THEY WERE RECRUITING THE 

790
00:30:59,840 --> 00:31:03,243
HIGHEST DOSE COHORT FOR THAT 

791
00:31:03,243 --> 00:31:13,020
STUDY ARE RECRUITER WAS DOING A 

792
00:31:13,020 --> 00:31:16,557
GREAT JOB TALKING ABOUT WHAT TO 

793
00:31:16,557 --> 00:31:19,360
EXPECT.  PREPARE TO PUKE WAS HER

794
00:31:19,360 --> 00:31:22,129
LINE.  AND SO WHAT I STARTED TO 

795
00:31:22,129 --> 00:31:25,199
SEE WAS THAT PARTICIPANTS WERE 

796
00:31:25,199 --> 00:31:26,634
EITHER DECIDING TO NOT GIVE 

797
00:31:26,634 --> 00:31:28,535
THEIR CONSENT AT ALL AND WALK 

798
00:31:28,535 --> 00:31:29,570
AWAY OR THEY CONSENTED AND THEY 

799
00:31:29,570 --> 00:31:30,938
WENT THROUGH THE SCREENING 

800
00:31:30,938 --> 00:31:33,107
PROCESS BUT THEN THE DAY OF THE 

801
00:31:33,107 --> 00:31:34,575
STUDY WHEN THEY EXPECTED TWELVE 

802
00:31:34,575 --> 00:31:35,909
PARTICIPANTS TO SHOW UP TO CHECK

803
00:31:35,909 --> 00:31:39,346
OUT THE STUDY, ACTUALLY ONLY 

804
00:31:39,346 --> 00:31:49,123
FIVE DID AND THE STUDY HAD TO BE

805
00:31:49,123 --> 00:31:53,027
CANCELED IF THEY KNEW IN ADVANCE

806
00:31:53,027 --> 00:31:55,295
THEY WERE GOING TO EXPERIENCE 

807
00:31:55,295 --> 00:31:56,964
SIDE EFFECTS.  A LOT OF TIMES 

808
00:31:56,964 --> 00:31:58,165
PARTICIPANTS ARE ALSO TRYING TO 

809
00:31:58,165 --> 00:32:00,534
IMPROVE THEIR CHANCES OF 

810
00:32:00,534 --> 00:32:03,270
QUALIFYING FOR STUDIES BY 

811
00:32:03,270 --> 00:32:05,339
ENGAGING IN DIFFERENT POST-STUDY

812
00:32:05,339 --> 00:32:06,540
ROUTINES AND SOME OF THESE 

813
00:32:06,540 --> 00:32:09,176
THINGS ARE POSITIVE AND SOME ARE

814
00:32:09,176 --> 00:32:10,277
NEGATIVE.  EDDIE SAID WHEN WE 

815
00:32:10,277 --> 00:32:12,079
GET OUT OF HERE I'M BASICALLY ON

816
00:32:12,079 --> 00:32:15,949
A VITAMIN REGIMEN, SO WE'RE 

817
00:32:15,949 --> 00:32:17,117
PUTTING BACK EVERYTHING THEY 

818
00:32:17,117 --> 00:32:18,485
TOOK FROM US.  HOW MUCH BLOOD 

819
00:32:18,485 --> 00:32:21,422
YOU GAVE AND DEPENDING ON HOW 

820
00:32:21,422 --> 00:32:31,965
MANY STUDIES YOU DO (READING).  

821
00:32:44,778 --> 00:32:46,914
SO I'M A SOCIAL SCIENTIST, I WAS

822
00:32:46,914 --> 00:32:48,949
REALLY STRUCK BY THE LEXICON 

823
00:32:48,949 --> 00:32:50,718
THAT THE PARTICIPANTS THAT I WAS

824
00:32:50,718 --> 00:32:53,754
INTERVIEWING WERE USING SO, FOR 

825
00:32:53,754 --> 00:32:55,389
INSTANCE, IN THE FIRST FACILITY 

826
00:32:55,389 --> 00:32:57,157
THAT I VISITED, THERE WAS A DAY 

827
00:32:57,157 --> 00:32:59,259
WHEN ONE OF THE PARTICIPANTS WAS

828
00:32:59,259 --> 00:33:01,061
TELLING ME THAT HE REALLY 

829
00:33:01,061 --> 00:33:02,963
STRUGGLED WITH HIS BILIRUBIN AND

830
00:33:02,963 --> 00:33:05,933
I HAD NO IDEA WAS BILIRUBIN WAS.

831
00:33:05,933 --> 00:33:08,502
SO I ASKED HIM ABOUT AND IT HE 

832
00:33:08,502 --> 00:33:10,871
TOLD ME ABOUT HOW IT WAS A LIVER

833
00:33:10,871 --> 00:33:12,706
ENZYME AND I REMEMBER GOOGLING 

834
00:33:12,706 --> 00:33:13,440
IT THAT NIGHT BUT DEFINITELY 

835
00:33:13,440 --> 00:33:14,441
PARTICIPANTS ARE LEARNING ABOUT 

836
00:33:14,441 --> 00:33:15,976
THESE THINGS BECAUSE IT MATTERS 

837
00:33:15,976 --> 00:33:18,245
TO THEM.  THEY'RE WORRIED ABOUT 

838
00:33:18,245 --> 00:33:19,646
ENROLLING SO IF THEY FIND OUT 

839
00:33:19,646 --> 00:33:22,816
THEY DIDN'T QUALIFY FOR A STUDY 

840
00:33:22,816 --> 00:33:25,419
BECAUSE OF THEIR BILIRUBIN NOW 

841
00:33:25,419 --> 00:33:26,854
BILIRUBIN IS REALLY IMPORTANT TO

842
00:33:26,854 --> 00:33:29,590
THEM.  SO THERE'S ALSO A PROCESS

843
00:33:29,590 --> 00:33:30,224
OF BEHAVIOR CHANGE THAT 

844
00:33:30,224 --> 00:33:31,525
PARTICIPANTS ENGAGE IN.  SO 

845
00:33:31,525 --> 00:33:34,862
THIS, I THOUGHT WAS A GREAT 

846
00:33:34,862 --> 00:33:35,763
EXAMPLE THAT CAME UP FROM DON HE

847
00:33:35,763 --> 00:33:38,265
SAID WHEN I FIRST STARTED DOING 

848
00:33:38,265 --> 00:33:40,567
STUDIES I WAS SMOKING WEED AND 

849
00:33:40,567 --> 00:33:41,135
THAT'S WHAT GOT ME TO STOP 

850
00:33:41,135 --> 00:33:51,545
(READING).  SO A LOT OF 

851
00:34:10,330 --> 00:34:11,532
PARTICIPANTS TALKED ABOUT HOW, 

852
00:34:11,532 --> 00:34:13,367
BECAUSE THEY WEREN'T SURE 

853
00:34:13,367 --> 00:34:16,069
NECESSARILY WHEN THEY WERE GOING

854
00:34:16,069 --> 00:34:22,810
TO SCREEN FOR A TRIAL -- IF TWO 

855
00:34:22,810 --> 00:34:24,378
DAYS LATER THEY WERE GOING FIND 

856
00:34:24,378 --> 00:34:26,647
OUT THERE WAS A GREAT STUDY THEY

857
00:34:26,647 --> 00:34:27,748
WANTED TO SCREEN FOR AND MAYBE 

858
00:34:27,748 --> 00:34:30,184
THE DRINKING THEY HAD DONE WAS 

859
00:34:30,184 --> 00:34:31,385
GOING TO SUDDENLY DISQUALIFY 

860
00:34:31,385 --> 00:34:32,853
THEM SO REALLY KIND OF THINKING 

861
00:34:32,853 --> 00:34:34,855
ABOUT CLINICAL TRIALS MUCH MORE 

862
00:34:34,855 --> 00:34:36,190
SO THAN YOU MIGHT IMAGINE 

863
00:34:36,190 --> 00:34:38,625
BECAUSE OF WANTING TO BE ABLE TO

864
00:34:38,625 --> 00:34:42,963
BE COMPETITIVE TO GET IN.  SO I 

865
00:34:42,963 --> 00:34:44,164
WANT TO SWITCH GEARS A LITTLE 

866
00:34:44,164 --> 00:34:46,834
BIT IN THE TIME THAT I HAVE LEFT

867
00:34:46,834 --> 00:34:48,602
BECAUSE, YOU KNOW, REALLY WHAT I

868
00:34:48,602 --> 00:34:50,170
WAS TRYING TO DO WITH THIS FIRST

869
00:34:50,170 --> 00:34:52,606
PART OF THE TALK WAS TO THINK 

870
00:34:52,606 --> 00:34:55,275
ABOUT HOW PARTICIPANTS FOCUS ON 

871
00:34:55,275 --> 00:34:56,343
THE FINANCIAL COMPENSATION THAT 

872
00:34:56,343 --> 00:34:58,645
THEY CAN GET FROM STUDIES SORT 

873
00:34:58,645 --> 00:35:02,316
OF DOES LEAD TO THEM EVEN IF 

874
00:35:02,316 --> 00:35:03,250
THEY ARE NOT PARTICIPATING AS 

875
00:35:03,250 --> 00:35:04,218
PROFESSIONAL PARTICIPANTS IN THE

876
00:35:04,218 --> 00:35:06,753
SENSE OF DOING IT FOR A LIVING 

877
00:35:06,753 --> 00:35:07,321
THEY'VE KIND OF BECOME 

878
00:35:07,321 --> 00:35:08,589
PROFESSIONAL IN THE SENSE WHERE 

879
00:35:08,589 --> 00:35:10,357
THEY BECOME EXPERTS ABOUT THE 

880
00:35:10,357 --> 00:35:12,092
PROCESS, THEY'RE THINKING ABOUT 

881
00:35:12,092 --> 00:35:14,194
THE PROCESS, THEY MIGHT BE 

882
00:35:14,194 --> 00:35:16,196
ENGAGING IN BEHAVIORS FOR THE 

883
00:35:16,196 --> 00:35:18,065
PROCESS.  SO THIS FINANCIAL 

884
00:35:18,065 --> 00:35:19,800
COMPENSATION IS CERTAINLY 

885
00:35:19,800 --> 00:35:24,705
MOTIVATING IN A MORE HOLISTIC 

886
00:35:24,705 --> 00:35:25,439
WAY THAN THEIR DECISION TO 

887
00:35:25,439 --> 00:35:28,942
PARTICIPATE OR NOT.  BY I WA

888
00:35:28,942 --> 00:35:30,444
WANT -- BUT I WANTED TO FLIP IT 

889
00:35:30,444 --> 00:35:30,978
TOO. 

890
00:35:30,978 --> 00:35:33,881
A LOT OF TIMES WE THINK ABOUT 

891
00:35:33,881 --> 00:35:35,449
POTENTIAL FOR UNDUE INDUCEMENT 

892
00:35:35,449 --> 00:35:37,184
BUT WHAT ABOUT THE FINANCIAL 

893
00:35:37,184 --> 00:35:40,087
RISK TO PARTICIPANTS?  AND HOW 

894
00:35:40,087 --> 00:35:43,156
CAN COMPENSATION FOR RESEARCH 

895
00:35:43,156 --> 00:35:46,660
ITSELF ACTUALLY OPPOSE A RISK TO

896
00:35:46,660 --> 00:35:48,595
HEALTHY VOLUNTEERS?  SO IF WE 

897
00:35:48,595 --> 00:35:51,265
THINK ABOUT COMPENSATION IN THE 

898
00:35:51,265 --> 00:35:54,468
CONTEXT OF RESEARCH IN THE U.S. 

899
00:35:54,468 --> 00:35:56,270
IT'S TAX INCOME SO HEALTHY 

900
00:35:56,270 --> 00:35:58,105
VOLUNTEERS ARE INDEPENDENT 

901
00:35:58,105 --> 00:35:59,773
CONTRACTORS FOR TAX PURPOSES 

902
00:35:59,773 --> 00:36:03,977
IT'S LIKE BEING A DRIVER FOR 

903
00:36:03,977 --> 00:36:09,917
UBERER LYFT.  THE GIG ECONOMY. 

904
00:36:09,917 --> 00:36:12,552
BUT CONSENT FORMS ONLY PROVIDE 

905
00:36:12,552 --> 00:36:14,254
LIMITED INFORMATION ABOUT TAX 

906
00:36:14,254 --> 00:36:15,022
LIABILITY THEY SAY SOMETHING 

907
00:36:15,022 --> 00:36:18,659
ALONG THE LINES OF, YOU KNOW, 

908
00:36:18,659 --> 00:36:20,327
THIS INCOME OR THE COMPENSATION 

909
00:36:20,327 --> 00:36:23,063
IS REPORT TO BELIEVE THE IRS. 

910
00:36:23,063 --> 00:36:25,132
AND THEN UP TO PARTICIPANTS TO 

911
00:36:25,132 --> 00:36:27,100
DETERMINE WHAT DOES THAT MEAN 

912
00:36:27,100 --> 00:36:29,536
EXACTLY?  AND SO AS PART OF IS 

913
00:36:29,536 --> 00:36:32,339
THIS FOLLOW UP STUDY THAT WE DID

914
00:36:32,339 --> 00:36:34,675
TO THE OBSERVATIONAL STUDY I 

915
00:36:34,675 --> 00:36:35,842
INITIALLY DID WE STARTED TO 

916
00:36:35,842 --> 00:36:37,277
REALIZE THAT PARTICIPANTS WERE 

917
00:36:37,277 --> 00:36:39,079
TALKING ABOUT TAXES A LOT OVER 

918
00:36:39,079 --> 00:36:39,913
THE THREE YEARS THAT THEY WERE 

919
00:36:39,913 --> 00:36:42,449
INVOLVED WITH OUR STUDY.  AND 

920
00:36:42,449 --> 00:36:44,284
WHAT WE SAW WAS THAT THERE WAS 

921
00:36:44,284 --> 00:36:45,953
OFTEN THIS INITIAL BELIEF THAT 

922
00:36:45,953 --> 00:36:49,289
IT'S TAX-FREE AND THIS IDEA THAT

923
00:36:49,289 --> 00:36:52,059
BEING TAX-FREE BECAUSE TAXES 

924
00:36:52,059 --> 00:36:54,061
AREN'T WITHHELD FROM THEIR 

925
00:36:54,061 --> 00:36:55,295
COMPENSATION UNLIKE A PAYCHECK 

926
00:36:55,295 --> 00:36:56,496
SO THEY HAD THIS FEELING LIKE 

927
00:36:56,496 --> 00:36:58,365
WOW, I'M GETTING THIS LUMP SUM 

928
00:36:58,365 --> 00:37:01,868
AND THERE'S NO TAXES.  HOWEVER, 

929
00:37:01,868 --> 00:37:04,905
FOR PARTICIPANTS WHO, 

930
00:37:04,905 --> 00:37:06,273
ESPECIALLY, THOSE WHO DID MANY 

931
00:37:06,273 --> 00:37:08,809
STUDIES IN THAT FIRST YEAR THAT 

932
00:37:08,809 --> 00:37:10,777
THEY EVER DID STUDIES THEY 

933
00:37:10,777 --> 00:37:12,379
REALLY WERE SHOCKED WHEN THEY 

934
00:37:12,379 --> 00:37:17,084
RECEIVED A 1099 THE NEXT JANUARY

935
00:37:17,084 --> 00:37:18,518
REALLY HAVING THIS FEELING LIKE 

936
00:37:18,518 --> 00:37:21,755
IT WAS OUT OF THE BLUE THAT THEY

937
00:37:21,755 --> 00:37:24,524
DIDN'T EXPECT THAT.  SO F IN 

938
00:37:24,524 --> 00:37:25,792
KIND OF THINKING ABOUT HOW 

939
00:37:25,792 --> 00:37:26,860
PARTICIPANTS TALK TO US ABOUT 

940
00:37:26,860 --> 00:37:28,829
THE TAX IMPLICATION OF STUDIES. 

941
00:37:28,829 --> 00:37:30,597
THERE WERE TWO WAYS OF THINKING 

942
00:37:30,597 --> 00:37:32,132
ABOUT IT.  SOME OF THEM 

943
00:37:32,132 --> 00:37:33,266
NAVIGATED THE TAX SYSTEM AS AN 

944
00:37:33,266 --> 00:37:34,568
ENTREPRENEUR LIKE THEY TALKED 

945
00:37:34,568 --> 00:37:36,870
ABOUT HOW IT WAS A JOB SO THEY 

946
00:37:36,870 --> 00:37:39,039
NEEDED TO SAVE THEIR RECEIPTS 

947
00:37:39,039 --> 00:37:40,774
AND ITEMIZE DEDUCTIONS AND THEY 

948
00:37:40,774 --> 00:37:44,711
REALLY HAD A VERY SAVVY STRATEGY

949
00:37:44,711 --> 00:37:46,880
OF TRYING TO THINK ABOUT HOW TO 

950
00:37:46,880 --> 00:37:49,383
LIMIT THEIR TAX LIABILITY FROM 

951
00:37:49,383 --> 00:37:51,118
STUDIES.  BUT MOST PARTICIPANTS 

952
00:37:51,118 --> 00:37:52,386
JUST AVOIDED REPORTING THEIR 

953
00:37:52,386 --> 00:37:54,888
TRIAL INCOME AND SO THIS CREATED

954
00:37:54,888 --> 00:37:56,556
I THINK A HUGE FINANCIAL AND 

955
00:37:56,556 --> 00:37:58,225
SOMETIMES EVEN A LEGAL LIABILITY

956
00:37:58,225 --> 00:38:01,661
FOR PARTICIPANTS.  SO I WANTED 

957
00:38:01,661 --> 00:38:04,164
TO JUST GIVE SOME OF THIS SOME 

958
00:38:04,164 --> 00:38:08,335
SENSE OF THIS AS WELL.  SO ROMAN

959
00:38:08,335 --> 00:38:10,437
IN TALKING ABOUT HOW HE USED TO 

960
00:38:10,437 --> 00:38:13,240
AVOID REPORTING TRIAL INCOME, 

961
00:38:13,240 --> 00:38:14,741
TOLD US, FOR EVERY TIME THAT YOU

962
00:38:14,741 --> 00:38:15,509
TAKE THAT MONEY IT'S TECHNICALLY

963
00:38:15,509 --> 00:38:22,582
(READING).  SO HERE HE'S SAYING 

964
00:38:22,582 --> 00:38:24,217
IT'S NOT WITHHELD, AND IF YOU 

965
00:38:24,217 --> 00:38:34,761
RIDE UNDER THE RADAR (READING). 

966
00:38:59,886 --> 00:39:00,454
BUT AT THE SAME TIME AS 

967
00:39:00,454 --> 00:39:01,088
PARTICIPANTS BECAME MORE AND 

968
00:39:01,088 --> 00:39:02,322
MORE AWARE OF THEIR TAX 

969
00:39:02,322 --> 00:39:04,124
LIABILITY THEY STARTED TO 

970
00:39:04,124 --> 00:39:05,525
REALIZE THAT TAX DEBT WAS 

971
00:39:05,525 --> 00:39:06,393
SOMETHING THAT COULD BE 

972
00:39:06,393 --> 00:39:08,962
POTENTIALLY VERY CRUSHING.  SO 

973
00:39:08,962 --> 00:39:10,430
STEVE WAS AN INDIVIDUAL THAT HAD

974
00:39:10,430 --> 00:39:14,334
STARTED TO PARTICIPATING IN 

975
00:39:14,334 --> 00:39:18,438
STUDIES IN THE LATE 1990S SO HE 

976
00:39:18,438 --> 00:39:20,440
HAD BEEN DOING STUDIES FOR A 

977
00:39:20,440 --> 00:39:23,143
VERY, VERY LONG TIME.  AND HE 

978
00:39:23,143 --> 00:39:26,880
BELIEVED THAT HE HAD EVENED WELL

979
00:39:26,880 --> 00:39:31,351
OVER 250,000 DOLLARS IN THAT 

980
00:39:31,351 --> 00:39:31,551
TIME. 

981
00:39:31,551 --> 00:39:33,753
THAT WAS HIS BACK OF THE 

982
00:39:33,753 --> 00:39:36,356
ENVELOPE MATH OF FIGURING OUT 

983
00:39:36,356 --> 00:39:37,457
HOW MUCH HE HAD PROBABLY GOTTEN 

984
00:39:37,457 --> 00:39:39,192
AND IN THAT TIME HE NEVER FILED 

985
00:39:39,192 --> 00:39:43,096
HIS TAXES, HE NEVER PAID TAXES. 

986
00:39:43,096 --> 00:39:46,266
WHY THIS SUDDENLY BECAME AN 

987
00:39:46,266 --> 00:39:50,437
ISSUE WAS THAT HE HAD TRAVELED 

988
00:39:50,437 --> 00:39:52,439
OVERSEAS AND MET A WOMAN AND HAD

989
00:39:52,439 --> 00:39:54,541
A CHILD WITH THAT WOMAN AND 

990
00:39:54,541 --> 00:39:55,809
WANTED TO BE ABLE TO BRING HER 

991
00:39:55,809 --> 00:39:57,577
AND THE CHILD TO THE U.S.  AND 

992
00:39:57,577 --> 00:40:01,314
SO HE STARTED LOOKING INTO THE 

993
00:40:01,314 --> 00:40:03,550
PROCESS OF HOW COULD HE GET HER,

994
00:40:03,550 --> 00:40:07,020
A FIANCE, AS PART OF THIS PLAN 

995
00:40:07,020 --> 00:40:08,355
TO BRING HIS CHILD INTO THE U.S.

996
00:40:08,355 --> 00:40:10,190
AND HE REALIZED HE WAS NOT 

997
00:40:10,190 --> 00:40:12,926
ELIGIBLE FOR A FIANCE VISA 

998
00:40:12,926 --> 00:40:14,828
BECAUSE HE OWED MONEY TO THE IRS

999
00:40:14,828 --> 00:40:16,229
SO THIS WAS A HUGE WAKE-UP CALL 

1000
00:40:16,229 --> 00:40:19,266
TO HIM AND HE SAID AS HE HAD 

1001
00:40:19,266 --> 00:40:20,333
BEEN EXPLORING THIS I WILL 

1002
00:40:20,333 --> 00:40:23,503
PROBABLY OWE ABOUT 35,000 

1003
00:40:23,503 --> 00:40:25,005
DOLLARS MEANING IN BACK TAXES 

1004
00:40:25,005 --> 00:40:28,341
AND MOST OF THAT IS WHAT THE IRS

1005
00:40:28,341 --> 00:40:30,210
SEES IS ME DOING CLINICAL TRIALS

1006
00:40:30,210 --> 00:40:32,379
WHERE THEY DIDN'T TAKE ANY TAXES

1007
00:40:32,379 --> 00:40:34,314
OUT I GOT PAID WITH CHECKS 

1008
00:40:34,314 --> 00:40:36,249
WITHOUT TAXES WITHHELD SO I'M 

1009
00:40:36,249 --> 00:40:38,818
SUPPOSED TO PAY TAX TO THE IRS 

1010
00:40:38,818 --> 00:40:40,620
ALL THOSE YEARS FOR ALL THOSE 

1011
00:40:40,620 --> 00:40:41,955
CLINICAL TRIALS AND EVEN THIS 

1012
00:40:41,955 --> 00:40:44,357
AMOUNT OF $35,000 WAS, HE WAS 

1013
00:40:44,357 --> 00:40:46,459
STILL NEGOTIATING WITH THE IRS 

1014
00:40:46,459 --> 00:40:48,828
BUT IT WAS ALREADY, THEY HAD 

1015
00:40:48,828 --> 00:40:51,998
ALREADY HALVED IT SO YOU CAN SEE

1016
00:40:51,998 --> 00:40:55,402
HOW SIGNIFICANT A TAX BURDEN CAN

1017
00:40:55,402 --> 00:40:57,304
BE FOR PARTICIPANTS WHO HAVE 

1018
00:40:57,304 --> 00:40:58,972
BEEN DOING THIS FOR A REALLY 

1019
00:40:58,972 --> 00:41:00,874
LONG TIME WE ALSO DID SEE THERE 

1020
00:41:00,874 --> 00:41:03,210
WERE PERVERSE INCENTIVES 

1021
00:41:03,210 --> 00:41:04,544
STEMMING FROM TAX LIABILITY.  

1022
00:41:04,544 --> 00:41:06,813
SOME PARTICIPANTS STARTED TO SAY

1023
00:41:06,813 --> 00:41:08,281
THAT THEY COULDN'T PARTICIPANT 

1024
00:41:08,281 --> 00:41:09,783
IN MORE STUDIES EVEN THOUGH THEY

1025
00:41:09,783 --> 00:41:12,652
COULD REALLY USE THE MONEY 

1026
00:41:12,652 --> 00:41:14,187
BECAUSE THEY WANTED TO STAY 

1027
00:41:14,187 --> 00:41:15,555
BELOW A CERTAIN INCOME THRESHOLD

1028
00:41:15,555 --> 00:41:18,358
SO FOR INSTANCE IF THEY 

1029
00:41:18,358 --> 00:41:19,893
QUALIFIED FOR GOVERNMENT SUPPORT

1030
00:41:19,893 --> 00:41:23,129
THEY DIDN'T WANT TO JEOPARDIZE 

1031
00:41:23,129 --> 00:41:27,601
THAT SOURCE OF INCOME FOR 

1032
00:41:27,601 --> 00:41:30,136
THEMSELVES.  SOME, THERE WERE A 

1033
00:41:30,136 --> 00:41:31,204
COUPLE PEOPLE WHO WANTED TO GO 

1034
00:41:31,204 --> 00:41:33,240
BACK TO COLLEGE AND REALIZED 

1035
00:41:33,240 --> 00:41:34,474
THAT THEY MIGHT QUALIFY FOR 

1036
00:41:34,474 --> 00:41:37,177
STUDENT AID BUT THEY WOULDN'T.  

1037
00:41:37,177 --> 00:41:39,279
IF THEY HAD AN INCOME OVER A 

1038
00:41:39,279 --> 00:41:39,946
CERTAIN LEVEL SO THEY WERE 

1039
00:41:39,946 --> 00:41:42,415
REALLY KIND OF WORRIED ABOUT 

1040
00:41:42,415 --> 00:41:44,150
THESE THRESHOLDS EVEN THOUGH 

1041
00:41:44,150 --> 00:41:46,186
THEY NEEDED THE INCOME FOR THEIR

1042
00:41:46,186 --> 00:41:48,888
DAY-TO-DAY LIVES SO I THOUGHT 

1043
00:41:48,888 --> 00:41:49,556
THAT WAS REALLY INTERESTING AND 

1044
00:41:49,556 --> 00:41:50,657
VERY SAD KIND OF THINKING ABOUT 

1045
00:41:50,657 --> 00:41:53,560
THE KINDS OF DECISIONS THEY WERE

1046
00:41:53,560 --> 00:41:54,594
MAKING.  PARTICIPANTS ALSO 

1047
00:41:54,594 --> 00:41:56,596
TALKED ABOUT HOW SOMETIMES THEY 

1048
00:41:56,596 --> 00:41:58,365
NEEDED TO DO ANOTHER CLINICAL 

1049
00:41:58,365 --> 00:41:59,866
TRIAL IN ORDER TO PAY THE MONEY 

1050
00:41:59,866 --> 00:42:05,138
THEY OWED AT THE -- FOR LAST 

1051
00:42:05,138 --> 00:42:07,240
YEAR'S TAXES SO SOME 

1052
00:42:07,240 --> 00:42:08,275
PARTICIPANTS SAID SOME PUT IN 

1053
00:42:08,275 --> 00:42:17,851
YEARS AND (READING).  HE WAS A 

1054
00:42:17,851 --> 00:42:19,586
BIT JOKING ABOUT IT BUT I THINK 

1055
00:42:19,586 --> 00:42:21,554
THERE WAS DEFINITELY A TRUTH TO 

1056
00:42:21,554 --> 00:42:24,658
THIS IN THINKING ABOUT SOME 

1057
00:42:24,658 --> 00:42:26,693
OTHER PARTICIPANTS AND TELLING, 

1058
00:42:26,693 --> 00:42:29,195
YOU KNOW, WHEN WE INTERVIEWED 

1059
00:42:29,195 --> 00:42:30,397
THEM ABOUT THEIR STUDY 

1060
00:42:30,397 --> 00:42:32,165
PARTICIPATION WE OFTEN ASKED 

1061
00:42:32,165 --> 00:42:33,700
WHAT PROMPTED YOU TO DO THIS 

1062
00:42:33,700 --> 00:42:35,835
SPECIFIC STUDY AND AT TAX TIME 

1063
00:42:35,835 --> 00:42:38,638
IT OFTEN WAS SPECIFICALLY ABOUT 

1064
00:42:38,638 --> 00:42:40,540
TAXES.  ANOTHER ISSUE I THINK 

1065
00:42:40,540 --> 00:42:41,675
ABOUT THIS RISK TO PARTICIPANTS 

1066
00:42:41,675 --> 00:42:43,043
IS THAT IT MIGHT BE TAKING 

1067
00:42:43,043 --> 00:42:46,479
ADVANTAGE OF HEALTHY VOLUNTEERS 

1068
00:42:46,479 --> 00:42:47,781
THAT COMPENSATION IS TAXED 

1069
00:42:47,781 --> 00:42:49,049
INCOME BECAUSE ACTUALLY IF WE 

1070
00:42:49,049 --> 00:42:50,717
THINK ABOUT IT, IT'S LESS 

1071
00:42:50,717 --> 00:42:55,088
COMPENSATION THAN IT SAMES -- 

1072
00:42:55,088 --> 00:42:57,957
SEEMS WHEN MAKING THAT DECISION.

1073
00:42:57,957 --> 00:43:00,160
AFTER THE TAXES, THE TIME, THE 

1074
00:43:00,160 --> 00:43:03,029
THIS, THE THAT, HOW MANY 

1075
00:43:03,029 --> 00:43:05,532
SCREENINGS -- AT THE END OF THE 

1076
00:43:05,532 --> 00:43:06,833
DAY IT WAS A LOT LESS THAN YOU 

1077
00:43:06,833 --> 00:43:08,501
ACTUALLY THOUGHT YOU WERE MAKING

1078
00:43:08,501 --> 00:43:10,970
AND THEN PARTICIPANTS I THOUGHT 

1079
00:43:10,970 --> 00:43:12,339
MADE AN EXCELLENT POINT ABOUT 

1080
00:43:12,339 --> 00:43:14,674
HOW IT SEEMED UNFAIR TO BE TAXED

1081
00:43:14,674 --> 00:43:16,943
ON SOMETHING WHEN YOU'RE TAKING 

1082
00:43:16,943 --> 00:43:18,812
A PHYSICAL RISK.  ESPECIALLY A 

1083
00:43:18,812 --> 00:43:20,413
PHYSICAL RISK THAT MIGHT BE FOR 

1084
00:43:20,413 --> 00:43:22,015
THE GREATER GOOD.  SO THIS 

1085
00:43:22,015 --> 00:43:23,316
PARTICIPANT SAID I DON'T THINK 

1086
00:43:23,316 --> 00:43:26,186
WE SHOULD HAVE TO PAY TAXES ON 

1087
00:43:26,186 --> 00:43:28,154
THIS MONEY BECAUSE YOU SHOULDN'T

1088
00:43:28,154 --> 00:43:29,856
HAVE TO PAY TAXES FOR THIS 

1089
00:43:29,856 --> 00:43:31,091
BECAUSE WE'RE DOING NOT BUT 

1090
00:43:31,091 --> 00:43:32,125
SERVICE FOR THE PEOPLE (READ

1091
00:43:32,125 --> 00:43:42,669
(READING).  SO I'LL CLOSE HERE. 

1092
00:43:49,776 --> 00:43:52,178
BUT I JUST REALLY WANTED TO 

1093
00:43:52,178 --> 00:43:55,215
EMPHASIZE THAT THE SYSTEM THAT 

1094
00:43:55,215 --> 00:43:59,586
WE HAVE IS REALLY COMING OUT OF 

1095
00:43:59,586 --> 00:44:01,187
THE REGULATORY SYSTEM.  BECAUSE 

1096
00:44:01,187 --> 00:44:02,389
WE HAVE THIS PHASE TRIAL AND 

1097
00:44:02,389 --> 00:44:04,324
REQUIREMENT FOR DRUGS TO GET 

1098
00:44:04,324 --> 00:44:07,227
APPROVED BY THE FDA, YOU KNOW, 

1099
00:44:07,227 --> 00:44:09,195
WE REALLY HAVE THIS NEED FOR 

1100
00:44:09,195 --> 00:44:10,096
HEALTHY VOLUNTEERS IN ORDER TO 

1101
00:44:10,096 --> 00:44:14,033
HAVE DRUGS BE APPROVED.  AND SO 

1102
00:44:14,033 --> 00:44:15,268
WE COULD KIND OF THINK ABOUT 

1103
00:44:15,268 --> 00:44:19,372
THAT AS CREATING AN INDUSTRY FOR

1104
00:44:19,372 --> 00:44:20,407
HEALTHY VOLUNTEER TRIALS AND 

1105
00:44:20,407 --> 00:44:23,009
THOSE WHO ARE INCENTIVIZED BY 

1106
00:44:23,009 --> 00:44:24,377
FINANCIAL COMPENSATION BUT ALSO 

1107
00:44:24,377 --> 00:44:26,045
HAVE THE TIME AND ABILITY TO BE 

1108
00:44:26,045 --> 00:44:27,247
CONFINED FOR LONG PERIODS OF 

1109
00:44:27,247 --> 00:44:29,048
TIME AND SO THE U.S. CONTEXT OF 

1110
00:44:29,048 --> 00:44:31,785
SOCIAL AND ECONOMIC INEQUALITIES

1111
00:44:31,785 --> 00:44:33,186
FUNNEL LOW INCOME PEOPLE OF 

1112
00:44:33,186 --> 00:44:34,654
COLOR INTO THESE TRIALS BECAUSE 

1113
00:44:34,654 --> 00:44:35,989
THEY'RE OFTEN THE PEOPLE WHO 

1114
00:44:35,989 --> 00:44:38,091
DON'T HAVE BETTER OPTIONS TO 

1115
00:44:38,091 --> 00:44:41,928
EARN INCOME.  AND I THINK, YOU 

1116
00:44:41,928 --> 00:44:44,664
KNOW, IF WE ALSO REFLECT ON THIS

1117
00:44:44,664 --> 00:44:45,632
COMPENSATION ISSUE I THINK 

1118
00:44:45,632 --> 00:44:46,699
THERE'S SO MUCH MORE TO THINK 

1119
00:44:46,699 --> 00:44:50,003
ABOUT BEYOND THIS WORRY ABOUT 

1120
00:44:50,003 --> 00:44:51,104
UNDUE INDUCEMENT BECAUSE THERE 

1121
00:44:51,104 --> 00:44:53,239
ARE THESE ETHICAL ISSUES THAT 

1122
00:44:53,239 --> 00:44:55,208
ARE TIED TO THE PROMISE OF 

1123
00:44:55,208 --> 00:44:57,243
FINANCIAL FREEDOM THAT 

1124
00:44:57,243 --> 00:44:59,279
PARTICIPANTS MIGHT HAVE BUT ALSO

1125
00:44:59,279 --> 00:45:01,448
THAT COMPENSATION MAY APPEAR 

1126
00:45:01,448 --> 00:45:02,749
SUBSTANTIAL BUT DOESN'T PROVIDE 

1127
00:45:02,749 --> 00:45:04,684
THE FINANCIAL SECURITY AND EVEN 

1128
00:45:04,684 --> 00:45:05,652
COMES WITH FINANCIAL AND LEGAL 

1129
00:45:05,652 --> 00:45:07,987
RISKS FROM TAXES SO I WILL END 

1130
00:45:07,987 --> 00:45:10,457
HERE BUT I AM VERY HAPPY TO TAKE

1131
00:45:10,457 --> 00:45:11,257
QUESTIONS OR COMMENTS.

1132
00:45:11,257 --> 00:45:14,060
>> AUDIENCE: (APPLAUSE).

1133
00:45:14,060 --> 00:45:14,994
>> THANK YOU VERY MUCH AS
I 

1134
00:45:14,994 --> 00:45:16,029
MENTIONED FOLKS IN HERE ARE 

1135
00:45:16,029 --> 00:45:17,363
WELCOME TO GO TO THE MICS AND 

1136
00:45:17,363 --> 00:45:19,732
ASK QUESTIONS.  LOOKS LIKE BOTH 

1137
00:45:19,732 --> 00:45:21,067
BRITTANY AND DANIEL ARE HEADED 

1138
00:45:21,067 --> 00:45:23,570
THERE AND I WILL MONITOR FOR 

1139
00:45:23,570 --> 00:45:25,138
QUESTIONS FROM OUR VIDEO 

1140
00:45:25,138 --> 00:45:26,573
AUDIENCE.  BRITTANY, GO AHEAD.

1141
00:45:26,573 --> 00:45:28,775
>> AUDIENCE: I'M WONDERING
ABOUT

1142
00:45:28,775 --> 00:45:31,311
HOW PARTICIPANTS HEAR ABOUT 

1143
00:45:31,311 --> 00:45:32,412
STUDIES, YOU MENTIONED THE 

1144
00:45:32,412 --> 00:45:34,547
PERSON WHO HEARD ABOUT IT ON A 

1145
00:45:34,547 --> 00:45:35,949
FLYER OUTSIDE HIS PAROLE HEARING

1146
00:45:35,949 --> 00:45:38,418
BUT IS IT LARGELY WORD OF MOUTH 

1147
00:45:38,418 --> 00:45:40,520
IS THERE KIND OF TARGETED GO TO 

1148
00:45:40,520 --> 00:45:43,256
THIS NEIGHBORHOOD AND POST 

1149
00:45:43,256 --> 00:45:46,860
FLYERS OR HOW ELSE DO THEY HEAR 

1150
00:45:46,860 --> 00:45:47,994
ABOUT IT?  

1151
00:45:47,994 --> 00:45:49,629
>> JILL: IN LARGE CITIES
IT'S 

1152
00:45:49,629 --> 00:45:50,964
ADVERTISED IN PUBLIC 

1153
00:45:50,964 --> 00:45:51,865
TRANSPORTATION ROUTES.  THAT'S 

1154
00:45:51,865 --> 00:45:53,466
ONE WAY.  IN ASKING PEOPLE HOW 

1155
00:45:53,466 --> 00:45:55,201
THEY LEARNED ABOUT CLINICAL 

1156
00:45:55,201 --> 00:45:57,036
TRIALS INITIALLY ALMOST EVERYONE

1157
00:45:57,036 --> 00:45:59,973
IT WAS WORD OF MOUTH SO I THINK 

1158
00:45:59,973 --> 00:46:00,773
IT WAS OFTENTIMES THIS THING 

1159
00:46:00,773 --> 00:46:02,408
WHERE, IT'S -- I THINK IT'S NOT 

1160
00:46:02,408 --> 00:46:03,576
THAT PEOPLE HAVE NEVER HEARD OF 

1161
00:46:03,576 --> 00:46:05,144
IT BEFORE THAT BUT I THINK 

1162
00:46:05,144 --> 00:46:07,280
HAVING MEETING SOMEBODY WHO HAS 

1163
00:46:07,280 --> 00:46:08,414
DONE IT BEFORE OFTEN GIVES THEM 

1164
00:46:08,414 --> 00:46:13,586
A SENSE OF SAFETY THAT,'  WELL 

1165
00:46:13,586 --> 00:46:15,655
MY FRIEND OR BROTHER DID IT AND 

1166
00:46:15,655 --> 00:46:18,324
THEY GOT THROUGH IT OKAY. 

1167
00:46:18,324 --> 00:46:19,759
AND THAT'S REASSURING THAT IF 

1168
00:46:19,759 --> 00:46:21,995
THEY'RE OKAY I WILL BE TOO AND 

1169
00:46:21,995 --> 00:46:23,096
THE MONEY SOUNDS GREAT.

1170
00:46:23,096 --> 00:46:24,330
>> AUDIENCE: I WAS ALSO 

1171
00:46:24,330 --> 00:46:25,698
WONDERING ABOUT HOW MANY 

1172
00:46:25,698 --> 00:46:26,366
PARTICIPANTS HAD CHILDREN 

1173
00:46:26,366 --> 00:46:27,667
BECAUSE IT SEEMS LIKE THAT MIGHT

1174
00:46:27,667 --> 00:46:30,803
BE A BARRIER TO THE PRIMARY 

1175
00:46:30,803 --> 00:46:32,438
CAREGIVER PARTICIPATING IN 

1176
00:46:32,438 --> 00:46:33,373
STUDYING AND IF THEY HAD 

1177
00:46:33,373 --> 00:46:35,108
CHILDREN WHO WAS THE CAREGIVER 

1178
00:46:35,108 --> 00:46:40,246
FOR THEM WHILE THEY WERE 

1179
00:46:40,246 --> 00:46:40,647
INPATIENT.  

1180
00:46:40,647 --> 00:46:42,448
>> JILL: I WOULD SAY MOST
OF 

1181
00:46:42,448 --> 00:46:44,217
THEM DID OR DO HAVE CHILDREN.  

1182
00:46:44,217 --> 00:46:46,386
AND THAT -- THAT RAISES A WHOLE 

1183
00:46:46,386 --> 00:46:47,820
BUNCH OF ISSUES BECAUSE OF 

1184
00:46:47,820 --> 00:46:49,322
COURSE LOTS OF PEOPLE WERE VERY 

1185
00:46:49,322 --> 00:46:49,856
CONCERNED ABOUT WHAT WAS 

1186
00:46:49,856 --> 00:46:52,158
HAPPENING ON THE OUTSIDE SO, YOU

1187
00:46:52,158 --> 00:46:52,792
KNOW, FIRST THING THAT CAME TO 

1188
00:46:52,792 --> 00:46:55,728
MIND WAS A STORY OF A 

1189
00:46:55,728 --> 00:46:57,397
PARTICIPANT WHO HIS SON GOT 

1190
00:46:57,397 --> 00:46:59,098
SECOND DEGREE BURNS WHILE HE WAS

1191
00:46:59,098 --> 00:47:01,868
IN A STUDY BECAUSE HE PULLED A 

1192
00:47:01,868 --> 00:47:04,771
LOT POT OFF THE STUFF AND 

1193
00:47:04,771 --> 00:47:06,639
PARTICIPANT ASKED THE RESEARCH 

1194
00:47:06,639 --> 00:47:08,441
CLINIC IF HE COULD LEAVE TO MEET

1195
00:47:08,441 --> 00:47:09,576
HIS PARTNER AT THE EMERGENCY 

1196
00:47:09,576 --> 00:47:10,476
ROOM AND THEY SAID YOU'RE 

1197
00:47:10,476 --> 00:47:12,312
WELCOME TO WITHDRAW FROM THE 

1198
00:47:12,312 --> 00:47:13,780
STUDY BUT WE CAN'T LET YOU LEAVE

1199
00:47:13,780 --> 00:47:16,883
JUST TO GO SO HE WAS VERY TORN 

1200
00:47:16,883 --> 00:47:18,217
ABOUT THAT DECISION.  HE 

1201
00:47:18,217 --> 00:47:19,352
ULTIMATELY DECIDED TO STAY IN 

1202
00:47:19,352 --> 00:47:21,120
THE STUDY BUT ALSO FELT VERY 

1203
00:47:21,120 --> 00:47:23,189
MUCH LIKE A BAD FATHER THAT HE 

1204
00:47:23,189 --> 00:47:24,490
MADE THAT CHOICE.  BUT I THINK, 

1205
00:47:24,490 --> 00:47:25,858
YOU KNOW, TO ANSWER YOUR 

1206
00:47:25,858 --> 00:47:28,328
QUESTION ABOUT CAREGIVING, I 

1207
00:47:28,328 --> 00:47:29,495
THINK, YOU KNOW, IT TIP -- 

1208
00:47:29,495 --> 00:47:31,164
BECAUSE MOST OF THESE 

1209
00:47:31,164 --> 00:47:32,532
PARTICIPANTS WERE MALE, WERE 

1210
00:47:32,532 --> 00:47:34,701
MEN, IT TYPICALLY FELL ON THEIR 

1211
00:47:34,701 --> 00:47:35,969
FEMALE PARTNERS SOMETIMES, 

1212
00:47:35,969 --> 00:47:38,104
MOTHERS OR MOTHERS-IN-LAW WERE 

1213
00:47:38,104 --> 00:47:39,272
TAKING CARE OF CHILDREN 

1214
00:47:39,272 --> 00:47:41,240
INTERESTINGLY A LOT OF THE WOMEN

1215
00:47:41,240 --> 00:47:43,343
WITH CHILDREN TALKED ABOUT BEING

1216
00:47:43,343 --> 00:47:45,445
THE IN THE STUDIES AS A 

1217
00:47:45,445 --> 00:47:46,379
VACATION. 

1218
00:47:46,379 --> 00:47:47,313
BECAUSE THEY HAD AN OPPORTUNITY 

1219
00:47:47,313 --> 00:47:48,948
TO BE AWAY FROM THEIR KIDS FOR A

1220
00:47:48,948 --> 00:47:51,250
FEW DAYS OR FOR A WEEK AND VERY 

1221
00:47:51,250 --> 00:47:53,786
FEW MEN TALKED ABOUT IT AS A 

1222
00:47:53,786 --> 00:47:55,655
VACATION BUT A LOT OF WOMEN DID.

1223
00:47:55,655 --> 00:47:56,289
>> AUDIENCE: THANK YOU.

1224
00:47:56,289 --> 00:47:57,690
>> AUDIENCE: THIS WAS SO 

1225
00:47:57,690 --> 00:47:59,158
FASCINATING, THANKS SO MUCH FOR 

1226
00:47:59,158 --> 00:48:05,798
THIS TALK.  MY QUESTION WAS, SO 

1227
00:48:05,798 --> 00:48:07,967
PRESUMABLY A LOT OF THESE 

1228
00:48:07,967 --> 00:48:09,335
PARTICIPANTS OR MAYBE LIKE -- 

1229
00:48:09,335 --> 00:48:10,970
ARE PARTICIPATING IN STUDIES 

1230
00:48:10,970 --> 00:48:13,373
DONE BY PRIVATE PHARMACEUTICAL 

1231
00:48:13,373 --> 00:48:15,074
COMPANIES AND PERHAPS ALSO, 

1232
00:48:15,074 --> 00:48:17,443
LIKE, GOVERNMENT FUNDED 

1233
00:48:17,443 --> 00:48:19,779
RESEARCH.  LIKE STUFF WITH THE 

1234
00:48:19,779 --> 00:48:23,149
NIH, I'M WONDERING IF THERE WAS 

1235
00:48:23,149 --> 00:48:25,618
ANY EVER, LIKE, IF THEY EVER HAD

1236
00:48:25,618 --> 00:48:27,954
ANY COMPARISONS BETWEEN THOSE 

1237
00:48:27,954 --> 00:48:30,690
TWO, YOU KNOW, I GUESS MY 

1238
00:48:30,690 --> 00:48:32,458
BROADER QUESTION IS 

1239
00:48:32,458 --> 00:48:34,293
PRIVATIZATION OF THESE PHASE ONE

1240
00:48:34,293 --> 00:48:35,995
TRIALS HAD ANY EFFECT ON 

1241
00:48:35,995 --> 00:48:38,131
SUBJECTIVE EXPERIENCES OR THE 

1242
00:48:38,131 --> 00:48:39,065
MARKET IN GENERAL?  

1243
00:48:39,065 --> 00:48:41,434
>> JILL: THAT'S A GREAT
QUESTION

1244
00:48:41,434 --> 00:48:43,503
AS A ROLE PARTICIPANTS SAW THE 

1245
00:48:43,503 --> 00:48:44,904
PRIVATE TRIALS AS THE BEST ONES 

1246
00:48:44,904 --> 00:48:46,105
BECAUSE THEY PAID THE MOST.  SO 

1247
00:48:46,105 --> 00:48:48,608
I THINK A LOT OF TIMES THEY SAW 

1248
00:48:48,608 --> 00:48:50,309
ACADEMIC MEDICAL CENTERS AS THE 

1249
00:48:50,309 --> 00:48:52,278
ONES THAT HAD THE REALLY CHEAP 

1250
00:48:52,278 --> 00:48:55,048
STUDIES THE WAY THEY DESCRIBE 

1251
00:48:55,048 --> 00:48:56,249
THEM AND THE STUDIES THAT WERE 

1252
00:48:56,249 --> 00:48:58,451
HAPPENING AT PLACES LIKE NIH, 

1253
00:48:58,451 --> 00:49:05,091
THEY SAW A  AS MOSTLY VACCINE 

1254
00:49:05,091 --> 00:49:05,358
RELATED. 

1255
00:49:05,358 --> 00:49:07,226
THOSE WERE NOT NECESSARILY THE 

1256
00:49:07,226 --> 00:49:08,728
RISKS THEY WERE WORRIED ABOUT 

1257
00:49:08,728 --> 00:49:10,196
BUT HOW LONG THEY WOULD BE OUT 

1258
00:49:10,196 --> 00:49:11,931
OF THE STUDY POOL IF THEY DIDN'T

1259
00:49:11,931 --> 00:49:13,633
HAVE TO STAY AT THE FACILITY BUT

1260
00:49:13,633 --> 00:49:14,734
THEY HAD TO BE FOLLOWED FOR A 

1261
00:49:14,734 --> 00:49:17,303
YEAR OR SOMETHING LIKE THAT.  SO

1262
00:49:17,303 --> 00:49:18,571
THEY OFTEN REALLY DID NOT LIKE 

1263
00:49:18,571 --> 00:49:22,108
THOSE KINDS OF STUDIES.  AND A 

1264
00:49:22,108 --> 00:49:26,446
LOT OF THE PRIVATE FACILITIES, 

1265
00:49:26,446 --> 00:49:33,252
NOT ONLY DID THEY PERCEIVE THEM 

1266
00:49:33,252 --> 00:49:35,254
AS PAYING MORE BUT AS MORE 

1267
00:49:35,254 --> 00:49:36,456
CATERING TO PARTICIPANTS.  A LOT

1268
00:49:36,456 --> 00:49:38,324
OF THE ACADEMIC MEDICAL CENTERS 

1269
00:49:38,324 --> 00:49:40,393
THEY KIND OF DESCRIBED AS NOT 

1270
00:49:40,393 --> 00:49:43,262
HAVING VERY MANY FACILITIES OR 

1271
00:49:43,262 --> 00:49:45,698
AMENITIES FOR PARTICIPANTS 

1272
00:49:45,698 --> 00:49:47,533
WHEREAS THE CLINICS HAVE 

1273
00:49:47,533 --> 00:49:49,936
RECREATION AREAS, TVS, VIDEO 

1274
00:49:49,936 --> 00:49:51,270
GAMES, ALL KINDS OF STUFF FOR 

1275
00:49:51,270 --> 00:49:53,906
THEM TO DO.  SO I THINK THEY SAW

1276
00:49:53,906 --> 00:49:56,008
THEM AS A BETTER ENVIRONMENT 

1277
00:49:56,008 --> 00:49:57,877
WHEN THEY KNEW THEY HAD TO BE 

1278
00:49:57,877 --> 00:49:59,312
THERE POTENTIALLY FOR WEEKS SO 

1279
00:49:59,312 --> 00:50:01,147
THEY WERE COMPARING THE TYPES OF

1280
00:50:01,147 --> 00:50:02,248
STUDIES, THE MONEY THAT THEY 

1281
00:50:02,248 --> 00:50:03,483
WERE PAYING BUT ALSO THE 

1282
00:50:03,483 --> 00:50:04,584
FACILITIES WHEN THEY WERE KIND 

1283
00:50:04,584 --> 00:50:05,384
OF THINKING ABOUT WHERE THEY 

1284
00:50:05,384 --> 00:50:14,727
WANTED TO DO STUDIES, YEAH.  

1285
00:50:14,727 --> 00:50:15,228
SN.

1286
00:50:15,228 --> 00:50:19,599
>> AUDIENCE: HI, THANK YOU
FOR 

1287
00:50:19,599 --> 00:50:21,701
YOUR PRESENTATION, WHEN YOU 

1288
00:50:21,701 --> 00:50:22,935
TALKED ABOUT PEOPLE TAKING CARE 

1289
00:50:22,935 --> 00:50:26,205
OF THEIR HEALTH IT REMINDED ME 

1290
00:50:26,205 --> 00:50:27,240
OF ATHLETES AND HOW THEY HAVE TO

1291
00:50:27,240 --> 00:50:28,407
MANAGE THAT STUFF.  YOU 

1292
00:50:28,407 --> 00:50:30,943
MENTIONED TOWARDS THE BEGINNING 

1293
00:50:30,943 --> 00:50:31,511
BEGINNING THAT THERE WERE 

1294
00:50:31,511 --> 00:50:33,412
CONCERNS ABOUT VALIDITY AND, YOU

1295
00:50:33,412 --> 00:50:35,281
KNOW, MAYBE IT'S THE CASE THAT 

1296
00:50:35,281 --> 00:50:37,250
SOME OF THESE DRUGS ARE NOT AS 

1297
00:50:37,250 --> 00:50:39,118
SAFE IT HAS THEY'RE MADE OUT TO 

1298
00:50:39,118 --> 00:50:40,520
SEEM.  SO I WAS WONDERING IF YOU

1299
00:50:40,520 --> 00:50:42,221
COULD SAY A LITTLE BIT MORE 

1300
00:50:42,221 --> 00:50:42,889
ABOUT THAT.  

1301
00:50:42,889 --> 00:50:44,423
>> JILL: YES I'M HAPPY TO.

1302
00:50:44,423 --> 00:50:48,494
ANOTHER PART OF THE STORY ABOUT 

1303
00:50:48,494 --> 00:50:50,062
HOW PARTICIPANTS ENGAGE IN THESE

1304
00:50:50,062 --> 00:50:50,797
BEHAVIORS IS THAT THEY ALSO 

1305
00:50:50,797 --> 00:50:53,699
BREAK A LOT OF RULES BY ENGAGING

1306
00:50:53,699 --> 00:50:56,569
IN THESE BEHAVIORS.  ONE OF THE 

1307
00:50:56,569 --> 00:50:58,404
MAIN THINGS THAT IS REQUIRED OF 

1308
00:50:58,404 --> 00:50:59,806
PARTICIPANTS IS THEY OBSERVE A 

1309
00:50:59,806 --> 00:51:00,907
WASHOUT PERIOD BETWEEN STUDIES 

1310
00:51:00,907 --> 00:51:03,943
AND THAT'S USUALLY 30 DAYS.  BUT

1311
00:51:03,943 --> 00:51:06,212
IF PARTICIPANTS WANT TO MAXIMIZE

1312
00:51:06,212 --> 00:51:07,313
THE INCOME THEY CAN EARN THEY 

1313
00:51:07,313 --> 00:51:09,715
OFTEN DON'T WANT TO OBSERVE THE 

1314
00:51:09,715 --> 00:51:11,317
30 DAY WASHOUT PERIOD SO THAT'S 

1315
00:51:11,317 --> 00:51:12,418
ONE WAY THAT THERE'S SOME 

1316
00:51:12,418 --> 00:51:13,519
CONCERN ABOUT WHAT, YOU KNOW, 

1317
00:51:13,519 --> 00:51:14,787
WHAT DOES THAT MEAN FOR THE 

1318
00:51:14,787 --> 00:51:18,658
VALIDITY OF STUDIES IF THEY'RE 

1319
00:51:18,658 --> 00:51:23,262
ENROLLING MUCH MORE QUICKLY THAN

1320
00:51:23,262 --> 00:51:24,397
THEY SHOULD.  SOME OF THEM ARE 

1321
00:51:24,397 --> 00:51:26,599
TAKING VITAMINS AND SUPPLEMENTS 

1322
00:51:26,599 --> 00:51:29,869
AND THEY SMUGGLE THEM INTO 

1323
00:51:29,869 --> 00:51:30,469
FACILITIES.  AND THE BIGGEST 

1324
00:51:30,469 --> 00:51:31,938
CONCERN IS WHETHER THEY'RE 

1325
00:51:31,938 --> 00:51:32,972
REPORTING ANY ADVERSE EVENTS 

1326
00:51:32,972 --> 00:51:33,873
THEY EXPERIENCE.  OF COURSE 

1327
00:51:33,873 --> 00:51:35,308
THERE'S THE OBJECTIVE MEASURES 

1328
00:51:35,308 --> 00:51:36,676
THAT ARE HAPPENING LIKE ALL THE 

1329
00:51:36,676 --> 00:51:41,581
BLOOD DRAWS OR E KRSECGS AND TH 

1330
00:51:41,581 --> 00:51:43,249
LIKE THAT BUT ANOTHER BIG PART 

1331
00:51:43,249 --> 00:51:47,820
OF USING HUMANS IS GETTING THEIR

1332
00:51:47,820 --> 00:51:50,156
SUBJECTIVE REPORTS.  YOU 

1333
00:51:50,156 --> 00:51:52,892
WOULDN'T KNOW SOME THINGS UNLESS

1334
00:51:52,892 --> 00:51:54,894
THEY TOLD YOU FOR INSTANCE.  

1335
00:51:54,894 --> 00:51:57,496
PARTICIPANTS AREN'T SURE, 

1336
00:51:57,496 --> 00:51:58,631
NECESSARILY, WHEN OR IF THEY 

1337
00:51:58,631 --> 00:51:59,532
SHOULD REPORT SO SOMETIMES 

1338
00:51:59,532 --> 00:52:02,335
THAT'S BECAUSE THEY'RE WORRIED 

1339
00:52:02,335 --> 00:52:02,935
THAT REPORTING MIGHT EFFECT 

1340
00:52:02,935 --> 00:52:04,003
THEIR FINANCIAL COMPENSATION, 

1341
00:52:04,003 --> 00:52:05,171
SOMETIMES THEY'RE WORRIED 

1342
00:52:05,171 --> 00:52:07,039
THEY'RE GOING TO GET KICKED OUT 

1343
00:52:07,039 --> 00:52:10,042
OF A STUDY IF THEY REPORT.  

1344
00:52:10,042 --> 00:52:11,444
SOMETIMES THEY JUST DECIDE, WELL

1345
00:52:11,444 --> 00:52:12,612
I DON'T THINK THIS WAS DRUG 

1346
00:52:12,612 --> 00:52:14,013
RELATED.  I THINK IT'S JUST 

1347
00:52:14,013 --> 00:52:15,281
BECAUSE I HAVEN'T HAD COFFEE IN 

1348
00:52:15,281 --> 00:52:18,651
TWO DAYS AND THAT'S A LEGITIMATE

1349
00:52:18,651 --> 00:52:21,454
THING.  ANY OF US WHO HAVE HAD 

1350
00:52:21,454 --> 00:52:22,221
CAFFEINE WITHDRAWAL HEADACHE 

1351
00:52:22,221 --> 00:52:24,457
THAT MIGHT RESONATE WITH US.  SO

1352
00:52:24,457 --> 00:52:28,527
THEY'RE NOT NECESSARILY DOING IT

1353
00:52:28,527 --> 00:52:30,763
FOR THE WRONG REASONS BUT THEY 

1354
00:52:30,763 --> 00:52:32,565
STILL DO NOT REPORT SOMETHING 

1355
00:52:32,565 --> 00:52:33,866
THEY'VE EXPERIENCED.  SO THAT'S 

1356
00:52:33,866 --> 00:52:35,268
THE HEALTHY VOLUNTEER BEHAVIOR 

1357
00:52:35,268 --> 00:52:37,470
BUT ON THE STAFF SIDE I ALSO SAW

1358
00:52:37,470 --> 00:52:41,140
A LOT OF RULE BREAKING AS WELL. 

1359
00:52:41,140 --> 00:52:45,745
SO SOMETIMES STAFF ALLOWING 

1360
00:52:45,745 --> 00:52:48,114
PARTICIPANTS TO REPEAT LABS BY 

1361
00:52:48,114 --> 00:52:49,348
LIKE COACHING THEM ABOUT WHAT TO

1362
00:52:49,348 --> 00:52:52,285
DO SO THEY COULD GET INTO A 

1363
00:52:52,285 --> 00:52:55,054
STUDY.  SOMETIMES RECORDING THE 

1364
00:52:55,054 --> 00:52:55,955
WRONG WEIGHT FOR A PARTICIPANT 

1365
00:52:55,955 --> 00:52:57,857
IF THEY WERE GOING TO, LIKE, 

1366
00:52:57,857 --> 00:53:01,627
EDGE OUT A LITTLE BIT WITH THEIR

1367
00:53:01,627 --> 00:53:02,662
BMI.  THE OTHER THING IS THAT 

1368
00:53:02,662 --> 00:53:05,531
GOING BACK TO THAT WASHOUT 

1369
00:53:05,531 --> 00:53:07,600
PERIOD, MOST OF THE TIME I WOULD

1370
00:53:07,600 --> 00:53:10,503
SAY THE STAFF KNEW IF SOMEBODY 

1371
00:53:10,503 --> 00:53:11,804
HADN'T OBSERVED THEIR WASHOUT 

1372
00:53:11,804 --> 00:53:14,473
PERIOD OR SUSPECTED THEY HADN'T 

1373
00:53:14,473 --> 00:53:17,910
BECAUSE THEY WOULD COME IN WITH 

1374
00:53:17,910 --> 00:53:19,612
FRESH PUNCTURE MARKS ON THEIR 

1375
00:53:19,612 --> 00:53:22,815
ARMS OR HAVE ADHESIVE MARKS AND 

1376
00:53:22,815 --> 00:53:23,983
THE STAFF WOULD SAY I ASKED THEM

1377
00:53:23,983 --> 00:53:25,651
IF THEY PARTICIPATED AND THEY 

1378
00:53:25,651 --> 00:53:27,086
SAID THEY DIDN'T SO I CAN TAKE 

1379
00:53:27,086 --> 00:53:28,854
THEM BY THEIR WORD SO I FEEL 

1380
00:53:28,854 --> 00:53:32,925
THERE'S THIS COMPLICITY IN THE 

1381
00:53:32,925 --> 00:53:33,693
INDUSTRY THAT EVERYBODY KIND OF 

1382
00:53:33,693 --> 00:53:35,728
WANTS THE HEALTHY VOLUNTEERS TO 

1383
00:53:35,728 --> 00:53:36,629
BE IN THERE.  THEY WANT TO BE IN

1384
00:53:36,629 --> 00:53:38,030
THERE, THE STAFF WANT THEM TO BE

1385
00:53:38,030 --> 00:53:40,499
IN THERE AND SO I THINK IT DOES 

1386
00:53:40,499 --> 00:53:41,667
REALLY RAISE CONCERNS ABOUT, 

1387
00:53:41,667 --> 00:53:42,535
LIKE, HOW DO WE REALLY THINK 

1388
00:53:42,535 --> 00:53:46,605
ABOUT THE DATA THAT ARE BEING 

1389
00:53:46,605 --> 00:53:48,274
PRODUCED IF THERE ARE THESE 

1390
00:53:48,274 --> 00:53:50,009
INCENTIVE TO GAME THE SYSTEM IN 

1391
00:53:50,009 --> 00:53:51,677
THESE WAYS.

1392
00:53:51,677 --> 00:53:55,214
>> YOU MENTIONED THE STAFF

1393
00:53:55,214 --> 00:53:56,716
PREFERS TO HAVE THESE 

1394
00:53:56,716 --> 00:53:58,484
REPEAT "REPEATERS" IN PART 

1395
00:53:58,484 --> 00:53:59,251
BECAUSE THEY'RE FAMILIAR AND 

1396
00:53:59,251 --> 00:54:03,856
SORT OF KNOW THE DRILL.  

1397
00:54:03,856 --> 00:54:04,890
>> JILL: EVEN ON THAT
POINT 

1398
00:54:04,890 --> 00:54:08,127
STAFF AS WELL AS PARTICIPANTS 

1399
00:54:08,127 --> 00:54:10,529
TOLD ME THAT THEY WOULD BAN OR 

1400
00:54:10,529 --> 00:54:12,698
PUT ON A BLACKLIST PARTICIPANTS 

1401
00:54:12,698 --> 00:54:13,532
WHO WERE SEEN AS THOSE WHO 

1402
00:54:13,532 --> 00:54:19,271
REPORTED A LOT OF ADVERSE 

1403
00:54:19,271 --> 00:54:19,505
EVENTS.

1404
00:54:19,505 --> 00:54:19,905
>> INTERESTING.  

1405
00:54:19,905 --> 00:54:20,573
>> JILL: THE STAFF
JUSTIFIED IT 

1406
00:54:20,573 --> 00:54:22,441
BY SAYING THESE ARE PEOPLE WHO 

1407
00:54:22,441 --> 00:54:24,210
ARE JUST TOO SENSITIVE WHICH YOU

1408
00:54:24,210 --> 00:54:25,911
KNOW THAT'S PROBLEMATIC BECAUSE 

1409
00:54:25,911 --> 00:54:27,013
THE PATIENT POPULATION IS GOING 

1410
00:54:27,013 --> 00:54:28,914
TO VARY BUT I KIND OF ALSO SAW 

1411
00:54:28,914 --> 00:54:30,483
IT AS THEY CREATE A LOT MORE 

1412
00:54:30,483 --> 00:54:31,350
WORK FOR THE STAFF IF THEY'RE 

1413
00:54:31,350 --> 00:54:35,187
DOING A LOT OF AE REPORTING AND 

1414
00:54:35,187 --> 00:54:35,855
PAPERWORK AS A RESULT SO THAT IS

1415
00:54:35,855 --> 00:54:38,591
ANOTHER BIG ASPECT OF IT SO THE 

1416
00:54:38,591 --> 00:54:39,225
REPEAT PARTICIPANT WASN'T JUST 

1417
00:54:39,225 --> 00:54:40,226
FOR PEOPLE'S COMPLIANCE OR 

1418
00:54:40,226 --> 00:54:46,565
ADHERENCE TO THE RILES  -- 

1419
00:54:46,565 --> 00:54:49,368
RULES, IT WAS HOW MUCH ARE THEY 

1420
00:54:49,368 --> 00:54:52,605
A REPORTER OR NOT REPORTED AES.

1421
00:54:52,605 --> 00:54:53,239
>> AUDIENCE: HI, THANK
YOU, I 

1422
00:54:53,239 --> 00:54:55,374
HAVE A LOT OF QUESTIONS BECAUSE 

1423
00:54:55,374 --> 00:54:59,678
THIS IS VERY INTERESTING BUT I 

1424
00:54:59,678 --> 00:55:02,281
WILL KEEP IT TO TWO FOR NOW.  

1425
00:55:02,281 --> 00:55:03,783
THERE WAS A SLIDE WHO MENTIONED 

1426
00:55:03,783 --> 00:55:05,684
SOMEBODY TALKING TO OTHER 

1427
00:55:05,684 --> 00:55:07,253
PARTICIPANTS ABOUT WHAT VITAMIN 

1428
00:55:07,253 --> 00:55:09,889
TO TAKE AND YOU WERE TALKING 

1429
00:55:09,889 --> 00:55:11,557
ABOUT REPEAT PARTICIPANTS. 

1430
00:55:11,557 --> 00:55:14,326
AND FAMILIARITY WITH STAFF.  I'M

1431
00:55:14,326 --> 00:55:16,962
CURIOUS IF YOU OBSERVED 

1432
00:55:16,962 --> 00:55:18,030
FAMILIARITY BETWEEN THE 

1433
00:55:18,030 --> 00:55:20,232
PARTICIPANTS.  AND WHAT THAT 

1434
00:55:20,232 --> 00:55:20,733
LOOKED LIKE.  

1435
00:55:20,733 --> 00:55:22,535
>> JILL: YES, THERE ARE
FOLKS 

1436
00:55:22,535 --> 00:55:23,235
WHO TRAVELLED TOGETHER AND 

1437
00:55:23,235 --> 00:55:25,838
SOMETIMES WHEN THEY DO THESE 

1438
00:55:25,838 --> 00:55:26,906
STUDIES THEY HAVE TO GO TO 

1439
00:55:26,906 --> 00:55:28,240
CLINICS THAT ARE NOT THAT CLOSE 

1440
00:55:28,240 --> 00:55:29,909
TO EACH OTHER SO DOING ROAD 

1441
00:55:29,909 --> 00:55:31,177
TRIPS TOGETHER.  ALTHOUGH THAT 

1442
00:55:31,177 --> 00:55:33,212
CREATES PROBLEMS IF ONE GETS 

1443
00:55:33,212 --> 00:55:35,247
INTO A STUDY AND OTHERS DON'T 

1444
00:55:35,247 --> 00:55:39,151
BUT, YEAH, THEY DEFINITELY HAVE 

1445
00:55:39,151 --> 00:55:40,853
THESE COMMUNITIES.  SOME PEOPLE 

1446
00:55:40,853 --> 00:55:42,388
HAVE GOTTEN INTO RELATIONSHIPS, 

1447
00:55:42,388 --> 00:55:43,489
AT LEAST ONE PERSON MARRIED 

1448
00:55:43,489 --> 00:55:45,925
SOMEONE THAT THEY HAD MET IN A 

1449
00:55:45,925 --> 00:55:48,461
STUDY.  SO THEY DEFINITELY MAKE 

1450
00:55:48,461 --> 00:55:49,562
FRIENDSHIPS.  I WOULD SAY THAT 

1451
00:55:49,562 --> 00:55:52,098
ONE THING THAT HAPPENS WITH, 

1452
00:55:52,098 --> 00:55:53,799
BECAUSE THEY'RE REPEAT 

1453
00:55:53,799 --> 00:55:55,267
PARTICIPANTS IS THEY DON'T 

1454
00:55:55,267 --> 00:55:55,935
NECESSARILY DECIDE IN ADVANCE TO

1455
00:55:55,935 --> 00:55:57,970
DO STUDIES TOGETHER BUT ONCE 

1456
00:55:57,970 --> 00:56:00,106
THEY GET THERE THEY REALIZE I 

1457
00:56:00,106 --> 00:56:01,073
KNOW THESE PEOPLE AND THAT 

1458
00:56:01,073 --> 00:56:03,242
REALLY DOES FOR THE MOST PART 

1459
00:56:03,242 --> 00:56:04,143
PROBABLY THERE ARE SOME NEGATIVE

1460
00:56:04,143 --> 00:56:06,812
EXAMPLES TOO BUT FOR THE MOST 

1461
00:56:06,812 --> 00:56:10,916
PART ADDS TO THE ENJOYMENT OF 

1462
00:56:10,916 --> 00:56:12,885
THE STUDY BECAUSE IT IS THEM 

1463
00:56:12,885 --> 00:56:16,822
SEEING THEIR OLD FRIENDS AGAIN 

1464
00:56:16,822 --> 00:56:22,461
THEY'RE MOTIVATED BY THE 

1465
00:56:22,461 --> 00:56:23,796
FINANCIAL COMPENSATION BUT ALSO 

1466
00:56:23,796 --> 00:56:24,997
MOTIVATED BY THE PEOPLE THEY 

1467
00:56:24,997 --> 00:56:25,631
WORK WITH.

1468
00:56:25,631 --> 00:56:27,266
>> AUDIENCE: YEAH, THAT'S
VERY 

1469
00:56:27,266 --> 00:56:28,267
INTERESTING, THANK YOU AND I WAS

1470
00:56:28,267 --> 00:56:31,203
ALSO WONDERING, SO A LOT OF 

1471
00:56:31,203 --> 00:56:33,506
THESE PLACES YOU'RE STAYING IN A

1472
00:56:33,506 --> 00:56:35,207
FACILITY FOR SEVERAL DAYS DID 

1473
00:56:35,207 --> 00:56:36,575
YOU TALK TO ANY PEOPLE THAT HAD 

1474
00:56:36,575 --> 00:56:37,443
UNSTABLE HOUSING CONDITIONS THAT

1475
00:56:37,443 --> 00:56:39,311
DID IT FOR THAT REASON OR, LIKE,

1476
00:56:39,311 --> 00:56:42,615
WHAT WAS THE SITUATION THERE?  

1477
00:56:42,615 --> 00:56:43,716
>> JILL: YEAH, DEFINITELY
THERE 

1478
00:56:43,716 --> 00:56:45,117
WERE SOME FOLKS WHO DID HAVE 

1479
00:56:45,117 --> 00:56:49,722
UNSTABLE HOUSING SITUATIONS.  

1480
00:56:49,722 --> 00:56:51,257
VERY FEW PEOPLE WOULD BE WHAT WE

1481
00:56:51,257 --> 00:56:55,194
WOULD THINK OF AS UNHOUSED.  

1482
00:56:55,194 --> 00:56:56,362
THERE WERE PEOPLE LIVING OUT OF 

1483
00:56:56,362 --> 00:56:58,898
THEIR CARS BECAUSE THEY TALKED 

1484
00:56:58,898 --> 00:57:00,499
HOW IT WAS GREAT TO BE IN A 

1485
00:57:00,499 --> 00:57:01,800
FACILITY WITH A BED, HOT SHOWER 

1486
00:57:01,800 --> 00:57:05,070
AND MEALS.  THEY PROBABLY 

1487
00:57:05,070 --> 00:57:07,206
WEREN'T THE NORM I THINK THEY 

1488
00:57:07,206 --> 00:57:08,807
WERE MORE THE EXCEPTION.  I 

1489
00:57:08,807 --> 00:57:10,309
THINK MOST PEOPLE DID TYPICALLY 

1490
00:57:10,309 --> 00:57:11,744
HAVE A HOME OR LIVING WITH 

1491
00:57:11,744 --> 00:57:14,713
RELATIVES OR THINGS LIKE THAT 

1492
00:57:14,713 --> 00:57:19,251
BUT ABSOLUTELY.  I THINK THERE 

1493
00:57:19,251 --> 00:57:20,953
WAS A SENSE OF VULNERABILITY FOR

1494
00:57:20,953 --> 00:57:23,255
A LOT OF THESE PEOPLE WHO WERE 

1495
00:57:23,255 --> 00:57:26,058
DOING STUDIES.  BUT I THINK SOME

1496
00:57:26,058 --> 00:57:27,259
WERE HOPING THAT THIS WAS GOING 

1497
00:57:27,259 --> 00:57:29,128
TO KIND OF BE THE THING THAT GOT

1498
00:57:29,128 --> 00:57:30,262
THEM AHEAD SO THEY COULD GET 

1499
00:57:30,262 --> 00:57:31,897
THEIR OWN APARTMENT OR THINGS 

1500
00:57:31,897 --> 00:57:33,632
LIKE THAT BUT I WOULD SAY MOST 

1501
00:57:33,632 --> 00:57:35,234
WEREN'T PEOPLE WHO WERE INHOUSED

1502
00:57:35,234 --> 00:57:39,271
IN THAT KIND OF CLASSIC SENSE.  

1503
00:57:39,271 --> 00:57:41,173
YEAH.

1504
00:57:41,173 --> 00:57:43,709
>> AUDIENCE: ARE THERE
ONLINE 

1505
00:57:43,709 --> 00:57:43,976
QUESTIONS.

1506
00:57:43,976 --> 00:57:46,045
>> YOU CAN TAKE THE LAST
TWO 

1507
00:57:46,045 --> 00:57:47,112
MINUTES IF YOU LIKE.

1508
00:57:47,112 --> 00:57:48,047
>> AUDIENCE: OKAY, THERE'S

1509
00:57:48,047 --> 00:57:49,615
CLEARLY LIKE A LOT OF TENSION 

1510
00:57:49,615 --> 00:57:51,283
HERE BETWEEN, LIKE, I DON'T 

1511
00:57:51,283 --> 00:57:53,552
KNOW, HAVING COERCIVE AMOUNTS OF

1512
00:57:53,552 --> 00:57:54,787
MONEY AND THEN ALSO, LIKE, 

1513
00:57:54,787 --> 00:57:57,323
PEOPLE WHO ARE DESPERATE, LIKE, 

1514
00:57:57,323 --> 00:58:00,626
TAKING ANY AMOUNT OF MONEY AND 

1515
00:58:00,626 --> 00:58:07,233
FEELING LIKE THAT'S O KOER 

1516
00:58:07,233 --> 00:58:09,168
SIEVE.  I'M CURIOUS HOW YOU 

1517
00:58:09,168 --> 00:58:11,804
THINK THAT COULD BE RESOLVED.  

1518
00:58:11,804 --> 00:58:14,873
>> JILL: WHEN WE WORK WITH

1519
00:58:14,873 --> 00:58:16,408
PARTICIPATION AND COMPENSATION I

1520
00:58:16,408 --> 00:58:20,746
FEEL THAT FRAMEWORKS BETTER THAN

1521
00:58:20,746 --> 00:58:22,715
HEALTHY TRIALS.  THEN THE 

1522
00:58:22,715 --> 00:58:24,116
FINANCIAL COMPENSATION HAVING 

1523
00:58:24,116 --> 00:58:26,685
THIS OUTSIZED ROLE IN PEOPLE'S 

1524
00:58:26,685 --> 00:58:27,219
DECISION-MAKING. 

1525
00:58:27,219 --> 00:58:29,054
WHEN THEY MIGHT ALSO HAVE 

1526
00:58:29,054 --> 00:58:30,656
MEDICAL BENEFITS.  FOR INSTANCE.

1527
00:58:30,656 --> 00:58:32,725
BUT I FEEL LIKE WITH HEALTHY 

1528
00:58:32,725 --> 00:58:33,359
VOLUNTEERS THEY'RE ALREADY DOING

1529
00:58:33,359 --> 00:58:35,661
IT FOR THE MONEY.  SO IF WE TAKE

1530
00:58:35,661 --> 00:58:37,963
THAT AS THE STARTING POINT, 

1531
00:58:37,963 --> 00:58:40,532
WE'RE, YOU KNOW, INDUCEMENT IS 

1532
00:58:40,532 --> 00:58:42,668
ALREADY KIND OF THE BASIS OF ALL

1533
00:58:42,668 --> 00:58:44,536
OF THIS.  SO WHAT BECOMES UNDUE?

1534
00:58:44,536 --> 00:58:46,272
THAT I THINK IS REALLY 

1535
00:58:46,272 --> 00:58:49,241
PROBLEMATIC BECAUSE IF WE LOWER 

1536
00:58:49,241 --> 00:58:50,643
COMPENSATION TOO MUCH, THEN 

1537
00:58:50,643 --> 00:58:52,311
YOU'RE GOING TO HAVE 

1538
00:58:52,311 --> 00:58:54,747
THE "DESPERATE" PEOPLE WHO ARE 

1539
00:58:54,747 --> 00:58:56,448
THE MOST LIKELY TO DO IT BECAUSE

1540
00:58:56,448 --> 00:58:58,550
THEY WILL SEE THAT'S NOT WORTH 

1541
00:58:58,550 --> 00:59:01,086
MY TIME.  I'M MUCH MORE 

1542
00:59:01,086 --> 00:59:02,421
CONCERNED ABOUT EXPLOITATION OF 

1543
00:59:02,421 --> 00:59:05,157
PEOPLE WHO ARE IN THESE 

1544
00:59:05,157 --> 00:59:05,791
PRECARIOUS FINANCIAL SITUATIONS 

1545
00:59:05,791 --> 00:59:07,393
THAN I AM ABOUT UNDUE INDUCEMENT

1546
00:59:07,393 --> 00:59:08,260
BECAUSE THEY ARE DOING IT FOR 

1547
00:59:08,260 --> 00:59:10,763
THE MONEY.  AND EVEN IF WE THINK

1548
00:59:10,763 --> 00:59:12,865
ABOUT, YOU KNOW, WHAT HEALTHY 

1549
00:59:12,865 --> 00:59:14,700
VOLUNTEERS MIGHT SAY ABOUT THIS,

1550
00:59:14,700 --> 00:59:16,568
YOU KNOW, THEY'RE COUNTING ON 

1551
00:59:16,568 --> 00:59:19,104
THE FACT THAT RISKS ARE ALREADY 

1552
00:59:19,104 --> 00:59:20,372
MINIMIZE.  SO, YOU KNOW, FOR 

1553
00:59:20,372 --> 00:59:22,007
THEM THEY'RE KIND OF THINKING, 

1554
00:59:22,007 --> 00:59:23,342
WELL, IF THE RISK DOESN'T 

1555
00:59:23,342 --> 00:59:24,476
CHANGE, WHAT'S THE DIFFERENCE 

1556
00:59:24,476 --> 00:59:26,679
BETWEEN PAYING ME 2,000 DOLLARS 

1557
00:59:26,679 --> 00:59:28,547
VERSUS PAYING ME 6,000 DOLLARS 

1558
00:59:28,547 --> 00:59:32,251
SO PAY ME THE 6,000 DOLLARS.  

1559
00:59:32,251 --> 00:59:33,118
SO I THINK THAT'S ANOTHER REALLY

1560
00:59:33,118 --> 00:59:35,921
BIG PIECE OF IT, YEAH.

1561
00:59:35,921 --> 00:59:36,789
>> AUDIENCE: GREAT, THANK
YOU SO

1562
00:59:36,789 --> 00:59:36,989
MUCH.

1563
00:59:36,989 --> 00:59:46,365
>> THANK YOU VERY MUCH. 
SO NOW 

1564
00:59:46,365 --> 00:59:51,337
WE'RE BACK TO ME.  AND WE'RE 

1565
00:59:51,337 --> 00:59:54,807
GOING TO DO A CASE AND I'M 

1566
00:59:54,807 --> 00:59:55,474
HOPING THAT SLIDO IS GOING TO BE

1567
00:59:55,474 --> 01:00:01,580
OUR FRIEND TODAY.  SO FIRST, MY 

1568
01:00:01,580 --> 01:00:03,248
GENERAL DISCLAIMER, YOU'VE SEEN 

1569
01:00:03,248 --> 01:00:04,650
MANY TIMES, THE NEXT IS THAT 

1570
01:00:04,650 --> 01:00:08,654
WE'RE GOING TO USE SLIDO.COM 

1571
01:00:08,654 --> 01:00:09,922
AGAIN AND THIS IS THE NUMBER 

1572
01:00:09,922 --> 01:00:12,091
THAT I'M GOING TO HAVE YOU ENTER

1573
01:00:12,091 --> 01:00:13,726
IN ORDER TO ANSWER THE QUESTIONS

1574
01:00:13,726 --> 01:00:15,561
I'M GOING TO ASK YOU.  AND I'M 

1575
01:00:15,561 --> 01:00:17,663
GOING TO SHOW THIS NUMBER AGAIN 

1576
01:00:17,663 --> 01:00:19,264
BUT JUST, I'LL JUST READ IT OUT 

1577
01:00:19,264 --> 01:00:29,308
FOR FOLKS, IT'S 2918976.  SO LET

1578
01:00:29,308 --> 01:00:31,076
ME MOVE FORWARD WITH OUR CASE 

1579
01:00:31,076 --> 01:00:35,681
SO, IMAGINE THAT, SO, THIS IS A 

1580
01:00:35,681 --> 01:00:39,051
POST-COVID CLINICAL TRIAL FOR 

1581
01:00:39,051 --> 01:00:42,588
THOSE WHO ARE EXPERIENCING A 

1582
01:00:42,588 --> 01:00:53,132
POST-COVID SYNDROME.  (READING).

1583
01:01:10,749 --> 01:01:13,852
SO THESE ARE FOLKS WHO HAD COVID

1584
01:01:13,852 --> 01:01:15,387
BAD ENOUGH TO BE HOSPITALIZED, 

1585
01:01:15,387 --> 01:01:17,055
ARE LEAVING THE HOSPITAL NOW, 

1586
01:01:17,055 --> 01:01:19,558
GOING BACK HOME BUT HAVE 

1587
01:01:19,558 --> 01:01:20,893
LINGERING PULMONARY SYMPTOMS.  

1588
01:01:20,893 --> 01:01:23,128
THE PATIENTS WILL BE RANDOMIZED 

1589
01:01:23,128 --> 01:01:26,064
TO RECEIVE BB 8 OR A PLACEBO FOR

1590
01:01:26,064 --> 01:01:26,899
TWELVE WEEKS WITH A ONE YEAR 

1591
01:01:26,899 --> 01:01:31,303
FOLLOW UP.  ALL PATIENTS WILL 

1592
01:01:31,303 --> 01:01:32,304
RECEIVE THE SAME BACKGROUND 

1593
01:01:32,304 --> 01:01:34,506
CURRENT STANDARD OF CARE.  

1594
01:01:34,506 --> 01:01:36,775
RIGHT?  SO JUST TO REMIND YOU 

1595
01:01:36,775 --> 01:01:37,643
ALL THE IDEA HERE IS THAT 

1596
01:01:37,643 --> 01:01:41,013
THEY'RE COMING INTO THE HOSPITAL

1597
01:01:41,013 --> 01:01:43,215
FOR THIS CLINICAL TRIAL, BUT 

1598
01:01:43,215 --> 01:01:45,551
THEY ARE EXPECTED TO HAVE 

1599
01:01:45,551 --> 01:01:46,852
SOMEONE OUTSIDE WHO IS TAKING 

1600
01:01:46,852 --> 01:01:48,754
CARE OF THEIR PRIMARY CARE BUT 

1601
01:01:48,754 --> 01:01:51,924
IF ISSUES COME UP DURING THE 

1602
01:01:51,924 --> 01:01:54,893
PROCESS OF THE STUDY, THAT IS 

1603
01:01:54,893 --> 01:01:57,262
STANDARD OF CARE, THE HOSPITAL 

1604
01:01:57,262 --> 01:02:00,799
WILL PROVIDE OR COVER THE COST 

1605
01:02:00,799 --> 01:02:02,668
OF THAT.  SO THE TRIAL IS A 

1606
01:02:02,668 --> 01:02:05,871
COLLABORATION BETWEEN THE NIH 

1607
01:02:05,871 --> 01:02:09,675
AND A PRIVATE COMPANY AS THE 

1608
01:02:09,675 --> 01:02:14,379
COVID PANDEMIC HAS SLOWED THE 

1609
01:02:14,379 --> 01:02:15,581
COMPANY IS WORRIED ABOUT MEETING

1610
01:02:15,581 --> 01:02:18,550
THEIR ENROLLMENT GOALS SO THE 

1611
01:02:18,550 --> 01:02:21,987
TRIAL IS CURRENTLY UNDERWAY IN 

1612
01:02:21,987 --> 01:02:26,291
FOUR -- IN SITES IN FOUR STATES.

1613
01:02:26,291 --> 01:02:29,328
ONE OF THESE SITES IS IN STATE 

1614
01:02:29,328 --> 01:02:29,928
X.  AND THEY HAVE INDICATED 

1615
01:02:29,928 --> 01:02:40,472
(READING).  MEANING THEY HAVE NO

1616
01:02:41,406 --> 01:02:43,675
HEALTH INSURANCE COVERAGE.  THE 

1617
01:02:43,675 --> 01:02:44,309
HEALTH SYSTEM OF WHICH THEY ARE 

1618
01:02:44,309 --> 01:02:54,820
(READING).  SO, HERE IS YOUR 

1619
01:02:59,525 --> 01:03:03,595
FIRST QUESTION.  IS IT OKAY FOR 

1620
01:03:03,595 --> 01:03:04,930
THE STATE X SITE TO LIMIT 

1621
01:03:04,930 --> 01:03:07,866
ENROLLMENT IN THIS WAY?  AND SO 

1622
01:03:07,866 --> 01:03:09,201
THE FIRST QUESTION IS JUST A YES

1623
01:03:09,201 --> 01:03:12,104
OR NO.  DO YOU THINK IT'S OKAY 

1624
01:03:12,104 --> 01:03:15,541
AND WE'LL OF COURSE TALK ABOUT, 

1625
01:03:15,541 --> 01:03:16,608
YOU KNOW, FURTHER ABOUT SOME OF 

1626
01:03:16,608 --> 01:03:19,244
THE ISSUES BUT JUST YOUR GUT 

1627
01:03:19,244 --> 01:03:21,880
RESPONSE.  IS IT OKAY FOR THE 

1628
01:03:21,880 --> 01:03:22,481
STATE TO LIMIT ENROLLMENT IN 

1629
01:03:22,481 --> 01:03:33,025
THIS WAY?  THANK YOU, ALL, FOR 

1630
01:03:47,239 --> 01:03:48,974
PARTICIPATING, IT LOOKS ABOUT A 

1631
01:03:48,974 --> 01:03:50,542
THIRD OF YOU SAY IT'S OKAY AND 

1632
01:03:50,542 --> 01:03:57,316
ANOTHER TWO-THIRDS SAY IT'S NOT.

1633
01:03:57,316 --> 01:03:59,117
SO, OOPS, THAT'S -- INTERESTING 

1634
01:03:59,117 --> 01:04:03,255
I I THOUGHT I HAD, I'M ASKING 

1635
01:04:03,255 --> 01:04:08,126
YOU THE QUESTION NEXT.  SO OF 

1636
01:04:08,126 --> 01:04:09,595
THOSE OF YOU WHO SAID YES OR CAN

1637
01:04:09,595 --> 01:04:11,096
THINK OF A REASON WHY, WHY DID 

1638
01:04:11,096 --> 01:04:12,864
YOU SAY YES?  OR IF YOU SAID NO,

1639
01:04:12,864 --> 01:04:15,267
WHY DO YOU THINK SOMEONE WHO 

1640
01:04:15,267 --> 01:04:18,637
SAID YES MIGHT SAY YES?  AND 

1641
01:04:18,637 --> 01:04:20,639
THESE ARE OPEN TEXT, YOU CAN 

1642
01:04:20,639 --> 01:04:31,183
JUST CHIME IN WITH YOUR RESULTS.

1643
01:04:36,588 --> 01:04:38,490
GREAT SO ONE WOULD BE TO PREVENT

1644
01:04:38,490 --> 01:04:40,559
TOO MANY COSTS TO PARTICIPANTS. 

1645
01:04:40,559 --> 01:04:42,094
RIGHT?  IF THE SITE IS NOT GOING

1646
01:04:42,094 --> 01:04:44,196
TO COVER IT, THAT MEANS THAT THE

1647
01:04:44,196 --> 01:04:44,896
PARTICIPANT IS GOING TO HAVE TO 

1648
01:04:44,896 --> 01:04:54,873
COVER THAT EXPENSE.  GREAT.  SO 

1649
01:04:54,873 --> 01:04:57,242
SOMEONE SAID, I WAS TAKING THIS 

1650
01:04:57,242 --> 01:04:58,844
FROM A VERY NARROW PERSPECTIVE 

1651
01:04:58,844 --> 01:05:00,545
THE QUESTION OF IS IT LEGAL TO 

1652
01:05:00,545 --> 01:05:03,048
DO THIS, YES, I THINK WE COULD 

1653
01:05:03,048 --> 01:05:05,150
DECIDE THAT MAYBE IT'S LEGAL TO 

1654
01:05:05,150 --> 01:05:07,252
DO THAT.  BUT WE'RE GOING TO BE 

1655
01:05:07,252 --> 01:05:09,721
TALKING ABOUT WHETHER IT'S 

1656
01:05:09,721 --> 01:05:11,089
ETHICALLY APPROPRIATE.  LET'S 

1657
01:05:11,089 --> 01:05:13,291
SEE, IF IT'S DONE DURING THE 

1658
01:05:13,291 --> 01:05:14,192
PROTOCOL DEVELOPMENT AND IS 

1659
01:05:14,192 --> 01:05:18,063
AGREED UPON BY ALL THE SITES 

1660
01:05:18,063 --> 01:05:20,232
THEN MAYBE THAT'S OKAY.  THEY 

1661
01:05:20,232 --> 01:05:21,566
MIGHT NOT BE ABLE TO GET THEIR 

1662
01:05:21,566 --> 01:05:23,068
FOLLOW UP CARE NEED.  RIGHT.  

1663
01:05:23,068 --> 01:05:26,171
THAT'S A PARTICIPANT FOCUSED 

1664
01:05:26,171 --> 01:05:29,374
CONCERN.  AND BECAUSE IT'S STILL

1665
01:05:29,374 --> 01:05:33,712
IMPROVED SOME ACCESS TO 

1666
01:05:33,712 --> 01:05:36,148
PARTICIPANTS.  GREAT.  EVERYONE 

1667
01:05:36,148 --> 01:05:39,284
SHOULD RECEIVE EQUAL TREATMENT 

1668
01:05:39,284 --> 01:05:40,952
OR OPPORTUNITY.  SO I GUESS WE 

1669
01:05:40,952 --> 01:05:42,988
CAN TAKE THAT IN TWO DIFFERENT 

1670
01:05:42,988 --> 01:05:46,591
WAYS, ONE, YOU CAN SAY THAT THAT

1671
01:05:46,591 --> 01:05:48,360
MEANS THAT IT WOULD -- IT'S OKAY

1672
01:05:48,360 --> 01:05:51,096
FOR THEM TO DO THIS.  IF THEY 

1673
01:05:51,096 --> 01:05:53,098
SPREAD THE OPPORTUNITY WIDELY 

1674
01:05:53,098 --> 01:05:55,434
AMONG THOSE WHO REMAIN.  OR SORT

1675
01:05:55,434 --> 01:05:59,104
OF THE OPPOSITE, IT PERHAPS 

1676
01:05:59,104 --> 01:06:02,441
UNFAIRLY EXCLUDES A NUMBER OF 

1677
01:06:02,441 --> 01:06:08,080
PEOPLE.  AS LONG AS IT'S SET UP 

1678
01:06:08,080 --> 01:06:10,415
AS AN EXCLUSIONARY CRITERIA 

1679
01:06:10,415 --> 01:06:11,149
UPFRONT IT'S OKAY.  THANK YOU 

1680
01:06:11,149 --> 01:06:12,517
FOR ALL OF THAT.  NOW WE'RE 

1681
01:06:12,517 --> 01:06:13,885
GOING TO MOVE ONTO THOSE WHO 

1682
01:06:13,885 --> 01:06:17,556
SAID NO OR FOR THOSE WHO SAID 

1683
01:06:17,556 --> 01:06:19,024
YES BUT IMAGINE WHAT SOMEONE WHO

1684
01:06:19,024 --> 01:06:21,093
SAID NO WOULD SAY AND WE STARTED

1685
01:06:21,093 --> 01:06:22,394
TO GET SOME OF THOSE IN THE 

1686
01:06:22,394 --> 01:06:27,599
RESPONSE TO THE LAST ONE.  OH, 

1687
01:06:27,599 --> 01:06:29,801
ACTUALLY, NO, I ALREADY STARTED 

1688
01:06:29,801 --> 01:06:32,237
THIS, WOW, SO I ASKED THE NEXT 

1689
01:06:32,237 --> 01:06:33,772
QUESTION WAS TO PUT IT INTO 

1690
01:06:33,772 --> 01:06:35,340
ETHICS TERMS WHICH MANY OF YOU 

1691
01:06:35,340 --> 01:06:38,810
HAVE ALREADY DONE.  AND SO I 

1692
01:06:38,810 --> 01:06:40,445
JUST WANT TO HIGHLIGHT A COUPLE 

1693
01:06:40,445 --> 01:06:41,880
OF THOSE.  YOU KNOW, FOLKS 

1694
01:06:41,880 --> 01:06:47,252
TALKED ABOUT EQUAL OPPORTUNITY. 

1695
01:06:47,252 --> 01:06:51,022
AND THINKING ABOUT WEATHER IT'S 

1696
01:06:51,022 --> 01:06:51,957
 -- WHETHER IT'S FAIR.  

1697
01:06:51,957 --> 01:06:54,326
IS IT FAIR TO DO IT OR NOT?  LET

1698
01:06:54,326 --> 01:06:56,795
ME JUST LOOK.  PROMOTING HEALTH 

1699
01:06:56,795 --> 01:07:01,833
AND SAFETY OF THE SUBJECTS.  

1700
01:07:01,833 --> 01:07:03,101
RIGHT, BY EXCLUDING THEM, WE ARE

1701
01:07:03,101 --> 01:07:05,303
PROTECTING THEM.  AND SO NOW I 

1702
01:07:05,303 --> 01:07:07,539
AM GOING TO GO ONTO THE QUESTION

1703
01:07:07,539 --> 01:07:15,247
OF THOSE WHO SAID NO.  OTHER 

1704
01:07:15,247 --> 01:07:25,791
REASONS.  TO SAY NO.  SAY THAT 

1705
01:07:31,363 --> 01:07:35,100
IN A SLIGHTLY DIFFERENT WAY.  

1706
01:07:35,100 --> 01:07:39,070
WHY SHOULDN'T STATE X LIMIT UP 

1707
01:07:39,070 --> 01:07:43,241
 -- ENROLLMENT IN THIS WAY?  

1708
01:07:43,241 --> 01:07:47,112
UNFAIR EXCLUSION OF THE 

1709
01:07:47,112 --> 01:07:49,614
UNINSURED.  PERHAPS INEQUITABLE.

1710
01:07:49,614 --> 01:07:51,516
IT'S MAYBE SEEN AS 

1711
01:07:51,516 --> 01:07:55,253
DISCRIMINATORY AGAINST THOSE WHO

1712
01:07:55,253 --> 01:07:58,290
ARE UNINSURED.  YEAH.  

1713
01:07:58,290 --> 01:07:59,624
EXCLUDEING THEM IS NOT 

1714
01:07:59,624 --> 01:08:01,059
EQUITABLE.  THE PROTOCOL SHOULD 

1715
01:08:01,059 --> 01:08:03,261
ACCOUNT FOR THIS AND MAKE SURE 

1716
01:08:03,261 --> 01:08:04,262
THE PARTICIPANTS RECEIVE THE 

1717
01:08:04,262 --> 01:08:06,932
SAME CARE THAT OTHERS ARE 

1718
01:08:06,932 --> 01:08:08,200
RECEIVING.  WOULD LIMIT 

1719
01:08:08,200 --> 01:08:11,269
SCIENTIFIC VALIDITY.  YES, THANK

1720
01:08:11,269 --> 01:08:13,939
YOU.  UNFAIR EXCLUSION WITHOUT 

1721
01:08:13,939 --> 01:08:14,639
INSURANCE COULD BE A LARGE 

1722
01:08:14,639 --> 01:08:16,975
DEMOGRAPHIC AND MAY HAVE OTHER 

1723
01:08:16,975 --> 01:08:18,210
CHARACTERISTICS BY EXCLUDING 

1724
01:08:18,210 --> 01:08:20,045
THEM YOU MAY NOT THEN BE ABLE TO

1725
01:08:20,045 --> 01:08:21,813
GENERALIZE TO THE LARGER 

1726
01:08:21,813 --> 01:08:28,286
POPULATION.  GREAT.  LOTS OF 

1727
01:08:28,286 --> 01:08:30,155
GOOD WORDS HERE.  JUSTICE, 

1728
01:08:30,155 --> 01:08:33,859
UNFAIR EXCLUSION, LIMITING 

1729
01:08:33,859 --> 01:08:39,264
SCIENTIFIC VALIDITY.  LESS 

1730
01:08:39,264 --> 01:08:41,800
REPRESENTATIVE.   YEAH.  SO 

1731
01:08:41,800 --> 01:08:47,405
IT -- LOTS OF GOOD TERMS HERE.  

1732
01:08:47,405 --> 01:08:51,509
COULD IMPACT GENERALIZABILITY.  

1733
01:08:51,509 --> 01:08:52,444
DISCRIMINATES AGAINST THOSE 

1734
01:08:52,444 --> 01:08:54,913
WITHOUT INSURANCE.  GREAT.  AND 

1735
01:08:54,913 --> 01:08:57,182
SO YOU'VE ALREADY, I'M REALLY 

1736
01:08:57,182 --> 01:08:59,384
EXCITED, WEEK SIX, YOU'RE 

1737
01:08:59,384 --> 01:09:00,151
ALREADY, I DON'T EVEN -- I DON'T

1738
01:09:00,151 --> 01:09:02,821
HAVE TO ASK YOU TO PUT THESE 

1739
01:09:02,821 --> 01:09:04,422
INTO THE TERMS OF SOMEONE, OF 

1740
01:09:04,422 --> 01:09:06,224
THINKING ABOUT ETHICS, YOU ARE 

1741
01:09:06,224 --> 01:09:07,826
ALREADY PUTTING THEM INTO ETHICS

1742
01:09:07,826 --> 01:09:11,296
TERMS WHICH IS AWESOME.  OKAY.  

1743
01:09:11,296 --> 01:09:16,167
SO WHAT I WANT TO DO NOW IS JUST

1744
01:09:16,167 --> 01:09:17,269
COVER A COUPLE OF -- RECOVER A 

1745
01:09:17,269 --> 01:09:18,503
COUPLE OF THE ISSUES THAT WE 

1746
01:09:18,503 --> 01:09:20,272
ALREADY TALKED ABOUT AND THEN 

1747
01:09:20,272 --> 01:09:23,441
ASK ONE MORE QUESTION.  SO 

1748
01:09:23,441 --> 01:09:24,809
YOU'VE ALREADY -- WE'VE ALREADY 

1749
01:09:24,809 --> 01:09:27,846
TALKED ABOUT SOME OF THESE.  SO 

1750
01:09:27,846 --> 01:09:28,880
PARTICIPANTS SHOULD BE CHOSEN 

1751
01:09:28,880 --> 01:09:30,916
BIASED PRIMARILY ON THE 

1752
01:09:30,916 --> 01:09:32,083
SCIENTIFIC OBJECTIVES OF THE 

1753
01:09:32,083 --> 01:09:33,451
TRIAL SO ISSUES AROUND 

1754
01:09:33,451 --> 01:09:36,621
SCIENTIFIC VALIDITY, RIGHT?  IF 

1755
01:09:36,621 --> 01:09:40,091
SOMEONE IS MEDICALLY ELIGIBLE 

1756
01:09:40,091 --> 01:09:41,993
ACCORDING TO THE CRITERIA, ONE 

1757
01:09:41,993 --> 01:09:45,163
COULD SAY THAT EXCLUDING A 

1758
01:09:45,163 --> 01:09:47,699
PARTICULAR GROUP BASED ON WHAT 

1759
01:09:47,699 --> 01:09:50,302
WE MIGHT CALL A MORALLY 

1760
01:09:50,302 --> 01:09:53,872
IRRELEVANT CHARACTERISTIC WOULD 

1761
01:09:53,872 --> 01:09:55,240
BE INAPPROPRIATE.  PARTICIPANTS 

1762
01:09:55,240 --> 01:09:57,275
SHOULD BE CHOSEN IN A WAY THAT 

1763
01:09:57,275 --> 01:09:58,977
REDUCES RISK AND ENHANCES 

1764
01:09:58,977 --> 01:10:00,512
BENEFITS BOTH TO INDIVIDUALS AND

1765
01:10:00,512 --> 01:10:03,748
SOCIETY.  RIGHT?  SO, AGAIN, IF 

1766
01:10:03,748 --> 01:10:06,818
THE GOAL HERE IS TO THINK ABOUT 

1767
01:10:06,818 --> 01:10:10,588
BOTH THOSE WHO MIGHT BE 

1768
01:10:10,588 --> 01:10:12,257
ELIGIBLE, THOSE WHO BENEFIT IF 

1769
01:10:12,257 --> 01:10:13,658
ENROLLED AND THOSE PATIENTS IN 

1770
01:10:13,658 --> 01:10:16,761
THE LONG RUN WHO MAY BENEFIT 

1771
01:10:16,761 --> 01:10:18,029
FROM THE CONTRIBUTION THAT THESE

1772
01:10:18,029 --> 01:10:21,399
INDIVIDUALS MAKE.  WE WANT TO 

1773
01:10:21,399 --> 01:10:26,137
THINK ABOUT HOW WELL WE IDENTIFY

1774
01:10:26,137 --> 01:10:28,506
AND CONSIDER THE RISKS, REDUCE 

1775
01:10:28,506 --> 01:10:29,674
THEM AS MUCH AS YOU CAN.  AND SO

1776
01:10:29,674 --> 01:10:31,242
ONE THING THAT ALL OF YOU, MANY 

1777
01:10:31,242 --> 01:10:35,113
OF YOU NOTED IS, LIKE, WHAT IS 

1778
01:10:35,113 --> 01:10:36,581
REDUCE RISK MEAN IN THIS 

1779
01:10:36,581 --> 01:10:38,783
CONTEXT?  AND IT PICKS UP A 

1780
01:10:38,783 --> 01:10:40,585
LITTLE ON WHAT JILL WAS 

1781
01:10:40,585 --> 01:10:43,254
MENTIONING BEFORE.  RIGHT?  

1782
01:10:43,254 --> 01:10:45,156
INCLUDING SOMEONE WHO IS 

1783
01:10:45,156 --> 01:10:48,693
UNINSURED MAY PUT THEM AT 

1784
01:10:48,693 --> 01:10:51,329
FINANCIAL RISK.  RIGHT?  WHEN 

1785
01:10:51,329 --> 01:10:53,565
SOMEONE IS UNINSURED THAT MEANS 

1786
01:10:53,565 --> 01:10:54,332
THEY DON'T HAVE HEALTH 

1787
01:10:54,332 --> 01:10:56,234
INSURANCE, RIGHT?  AND FOR THOSE

1788
01:10:56,234 --> 01:11:01,172
OF YOU WHO HAVE EVER VISITED AN 

1789
01:11:01,172 --> 01:11:01,873
EMERGENCY FOR EXAMPLE WHEN I 

1790
01:11:01,873 --> 01:11:04,175
HAVE HEALTH INSURANCE, YOU'RE 

1791
01:11:04,175 --> 01:11:06,978
GOING TO PAY SOME PORTION OF 

1792
01:11:06,978 --> 01:11:09,547
THAT BILL.  IF YOU DON'T HAVE 

1793
01:11:09,547 --> 01:11:11,249
HEALTH INSURANCE AND AS A SIDE 

1794
01:11:11,249 --> 01:11:14,519
NOTE, RIGHT, THOSE RATES ARE 

1795
01:11:14,519 --> 01:11:15,520
NEGOTIATED WITH THE INSURANCE 

1796
01:11:15,520 --> 01:11:17,389
COMPANIES, LARGE ACADEMIC 

1797
01:11:17,389 --> 01:11:18,690
MEDICAL CENTERS OR HEALTH 

1798
01:11:18,690 --> 01:11:20,658
SYSTEMS GET DISCOUNTS ON THAT 

1799
01:11:20,658 --> 01:11:22,460
RATE.  BUT IF YOU'RE A REGULAR 

1800
01:11:22,460 --> 01:11:24,029
OLD PERSON WHO DOES NOT HAVE 

1801
01:11:24,029 --> 01:11:27,165
HEALTH INSURANCE, YOU ARE PAYING

1802
01:11:27,165 --> 01:11:29,801
THE FULL AMOUNT OF THE CARE 

1803
01:11:29,801 --> 01:11:32,003
PROVIDED.  SO YOU MAY END UP 

1804
01:11:32,003 --> 01:11:33,371
PAYING MUCH MORE WHEN YOU 

1805
01:11:33,371 --> 01:11:35,974
COMPARE THE TWO COSTS FROM 

1806
01:11:35,974 --> 01:11:39,811
SOMEONE WHO IS INSURED AND WHO 

1807
01:11:39,811 --> 01:11:42,680
IS NOT.  THAT'S A GENERAL 

1808
01:11:42,680 --> 01:11:45,850
INJUSTICE IN OUR SYSTEM BUT 

1809
01:11:45,850 --> 01:11:46,551
ENROLLING SOMEONE WHEN THERE'S 

1810
01:11:46,551 --> 01:11:48,620
AN EXPECTATION THAT THERE IS 

1811
01:11:48,620 --> 01:11:50,055
GOING TO BE STANDARD OF █CARE AD

1812
01:11:50,055 --> 01:11:51,156
SOMEONE'S GOING TO HAVE TO PAY 

1813
01:11:51,156 --> 01:11:53,591
FOR IT.  IT'S GOING TO BE 

1814
01:11:53,591 --> 01:11:55,193
OUT-OF-POCKET FOR THAT 

1815
01:11:55,193 --> 01:11:57,495
PARTICIPANT.  SO ARE WE PUTTING 

1816
01:11:57,495 --> 01:11:59,898
THEM AT FINANCIAL RISK OF 

1817
01:11:59,898 --> 01:12:01,099
INCLUDING THEM?  AND THEN WE 

1818
01:12:01,099 --> 01:12:04,035
NEED TO BALANCE THAT ALONG WITH 

1819
01:12:04,035 --> 01:12:05,470
THE PHYSICAL SOCIAL-EMOTIONAL 

1820
01:12:05,470 --> 01:12:07,305
RISK OF BEING IN THE STUDY AND 

1821
01:12:07,305 --> 01:12:10,608
THEN WHAT THE POTENTIAL BENEFITS

1822
01:12:10,608 --> 01:12:15,246
ARE.  SO MAYBE WE WOULD WANT TO 

1823
01:12:15,246 --> 01:12:18,483
ENGAGE WITH A PERSON IN AN 

1824
01:12:18,483 --> 01:12:20,452
INFORMED CONSENT CONVERSATION 

1825
01:12:20,452 --> 01:12:24,389
ABOUT WHAT MIGHT HAPPEN IF THEY 

1826
01:12:24,389 --> 01:12:26,591
ENROLL?  WHAT ADDITIONAL 

1827
01:12:26,591 --> 01:12:27,258
FINANCIAL RESPONSIBILITIES THEY 

1828
01:12:27,258 --> 01:12:28,893
MIGHT HAVE.  WHAT IS REQUIRED BY

1829
01:12:28,893 --> 01:12:32,363
THE STUDY?  IS THAT THIS 

1830
01:12:32,363 --> 01:12:35,200
PARTICULAR BASELINE CARE BE 

1831
01:12:35,200 --> 01:12:37,168
COVERED?  AND SO MAYBE THEY WANT

1832
01:12:37,168 --> 01:12:39,571
TO MAKE A DECISION TO ENROLL 

1833
01:12:39,571 --> 01:12:45,176
DESPITE THAT RISK.  IS IT 

1834
01:12:45,176 --> 01:12:46,878
APPROPRIATE FOR "US" OR IF THE 

1835
01:12:46,878 --> 01:12:48,913
CLINICAL STUDY TEAM TO MAKE THAT

1836
01:12:48,913 --> 01:12:52,817
DECISION ON BEHALF OF THE 

1837
01:12:52,817 --> 01:12:54,519
INDIVIDUAL?  AND THEN LASTLY AS 

1838
01:12:54,519 --> 01:12:55,987
IT RELATE TO FAIR PARTICIPANT 

1839
01:12:55,987 --> 01:12:57,455
SELECTION, AGAIN, WE'VE TALKED 

1840
01:12:57,455 --> 01:12:59,190
ABOUT THIS, THE IMPORTANCE OF 

1841
01:12:59,190 --> 01:13:01,960
SORT OF SHARING THE RISKS, 

1842
01:13:01,960 --> 01:13:05,196
BURDENS AND POTENTIAL BENEFITS 

1843
01:13:05,196 --> 01:13:06,331
OF PARTICIPATION ACROSS ALL 

1844
01:13:06,331 --> 01:13:09,434
INDIVIDUALS AND SOCIETAL GROUPS 

1845
01:13:09,434 --> 01:13:12,170
AS POSSIBLE.  SO WE WORRY ABOUT 

1846
01:13:12,170 --> 01:13:15,740
BOTH EXCLUSION AND INCLUSION.  

1847
01:13:15,740 --> 01:13:17,942
INCLUSION AS IT MEANS SOMEONE 

1848
01:13:17,942 --> 01:13:21,146
HAS AN OPPORTUNITY OR A 

1849
01:13:21,146 --> 01:13:22,981
POSSIBILITY OF BENEFITTING AN 

1850
01:13:22,981 --> 01:13:25,283
EXCLUSION IN TERMS OF WHETHER OR

1851
01:13:25,283 --> 01:13:27,252
NOT THAT PARTICULAR GROUP IS 

1852
01:13:27,252 --> 01:13:29,787
TAKING ON TOO MUCH OF THE BURDEN

1853
01:13:29,787 --> 01:13:34,125
OF THE TRIAL AND/OR WON'T 

1854
01:13:34,125 --> 01:13:36,027
BENEFIT AS A RESULT OF THEIR 

1855
01:13:36,027 --> 01:13:37,061
PARTICIPATION THE GROUP FROM 

1856
01:13:37,061 --> 01:13:40,665
WHICH THEY COME IS LESS LIKELY 

1857
01:13:40,665 --> 01:13:42,767
TO BENEFIT FROM THE FINDINGS OF 

1858
01:13:42,767 --> 01:13:44,335
THE STUDY.  WE'LL TALK MORE 

1859
01:13:44,335 --> 01:13:48,373
ABOUT THAT NEXT WEEK WHEN WE 

1860
01:13:48,373 --> 01:13:52,110
TRANSITION TO INTERNATIONAL 

1861
01:13:52,110 --> 01:13:55,713
ISSUES.  SO JILL MENTIONED UNDUE

1862
01:13:55,713 --> 01:13:58,850
INDUCEMENT AND SO ONE MIGHT BE 

1863
01:13:58,850 --> 01:14:02,020
CONCERNED THAT IF THE PERSON WHO

1864
01:14:02,020 --> 01:14:03,888
ISN'T INSURED AND WANTS TO 

1865
01:14:03,888 --> 01:14:07,258
ENROLL AT ONE OF THE SITES WHERE

1866
01:14:07,258 --> 01:14:09,894
THE STANDARD OF CARE WILL BE 

1867
01:14:09,894 --> 01:14:11,229
COVERED, IF, LET ME SAY THAT A 

1868
01:14:11,229 --> 01:14:13,064
DIFFERENT WAY, AT THE OTHER 

1869
01:14:13,064 --> 01:14:17,435
THREE SITES, THEY PLAN TO ENROLL

1870
01:14:17,435 --> 01:14:19,103
UNINSURED PARTICIPANTS AND THE 

1871
01:14:19,103 --> 01:14:22,674
SITES WILL COVER THE STANDARD OF

1872
01:14:22,674 --> 01:14:24,642
CARE COSTS FOR THOSE 

1873
01:14:24,642 --> 01:14:25,143
PARTICIPANTS.  SO THE 

1874
01:14:25,143 --> 01:14:27,245
PARTICIPANTS IN THOSE OTHER 

1875
01:14:27,245 --> 01:14:29,948
THREE SITES WILL NOT BE AT 

1876
01:14:29,948 --> 01:14:32,717
FINANCIAL RISK.  THIS OTHER SITE

1877
01:14:32,717 --> 01:14:35,286
WANTS TO EXCLUDE ANYONE WHO IS 

1878
01:14:35,286 --> 01:14:38,590
INSURED BECAUSE THEY DON'T WANT 

1879
01:14:38,590 --> 01:14:40,458
TO COVER THAT COST.  AND SO THE 

1880
01:14:40,458 --> 01:14:42,393
ONE WORRY MIGHT BE FOR THE FOLKS

1881
01:14:42,393 --> 01:14:46,698
WHO ARE IN THOSE OTHER SITES OF 

1882
01:14:46,698 --> 01:14:48,132
IS PROVIDING COVERING STANDARD 

1883
01:14:48,132 --> 01:14:49,834
OF CARE FOR THE PERIOD OF THIS 

1884
01:14:49,834 --> 01:14:52,937
TRIAL WHICH IS UP TO A YEAR IS 

1885
01:14:52,937 --> 01:14:55,273
THAT SOMEHOW AN UNDO INDUCEMENT 

1886
01:14:55,273 --> 01:14:58,576
FOR THOSE INDIVIDUALS?  AND I 

1887
01:14:58,576 --> 01:14:59,978
WOULD ARGUE THAT IT'S LIKELY 

1888
01:14:59,978 --> 01:15:02,213
NOT.  THAT IT'S RELATIVELY 

1889
01:15:02,213 --> 01:15:05,717
MODEST AND WHEN WE TALK ABOUT 

1890
01:15:05,717 --> 01:15:07,118
UNDUE INDUCEMENT AND JILL 

1891
01:15:07,118 --> 01:15:08,419
MENTIONED THIS BEFORE, SOMETIMES

1892
01:15:08,419 --> 01:15:10,388
WE THINK ABOUT IT IN THE SETTING

1893
01:15:10,388 --> 01:15:12,757
OF IF YOU'RE TALKING ABOUT 

1894
01:15:12,757 --> 01:15:15,260
PEOPLE WHO HAVE A CONDITION, 

1895
01:15:15,260 --> 01:15:17,729
THESE FOLKS ARE ALL AT HIGH RISK

1896
01:15:17,729 --> 01:15:24,002
OF HAVING LONG COVID.  WHEN 

1897
01:15:24,002 --> 01:15:29,007
THERE IS A POTENTIAL BENEFIT FOR

1898
01:15:29,007 --> 01:15:30,508
INDIVIDUAL WHO IS ENROLL MAYBE 

1899
01:15:30,508 --> 01:15:31,342
THAT'S ENOUGH. 

1900
01:15:31,342 --> 01:15:33,745
AND THEN WE DON'T TRADITIONALLY 

1901
01:15:33,745 --> 01:15:34,612
PAY THEM FOR THEIR PARTICIPATION

1902
01:15:34,612 --> 01:15:36,581
BUT IN THIS CASE, THERE IS GOING

1903
01:15:36,581 --> 01:15:40,151
TO BE FOR THOSE WHO ARE IN THOSE

1904
01:15:40,151 --> 01:15:41,819
OTHER SITES, SOME FINANCIAL 

1905
01:15:41,819 --> 01:15:43,388
BENEFIT IN COVERING THE STANDARD

1906
01:15:43,388 --> 01:15:46,858
OF CARE PROCEDURES THAT THEY 

1907
01:15:46,858 --> 01:15:48,926
OTHERWISE WOULDN'T RECEIVE, 

1908
01:15:48,926 --> 01:15:50,995
RIGHT?  BECAUSE THEY ARE 

1909
01:15:50,995 --> 01:15:53,064
UNINSURED, THEY ARE AT RISK OF 

1910
01:15:53,064 --> 01:15:54,766
LONG COVID.  THEY ARE GOING TO 

1911
01:15:54,766 --> 01:15:57,368
BE OUT IN THE COMMUNITY.  MAYBE 

1912
01:15:57,368 --> 01:15:58,102
THERE'S SOMETHING THAT IS OF 

1913
01:15:58,102 --> 01:16:02,206
UNDUE INDUCEMENT FOR THEM.  BUT 

1914
01:16:02,206 --> 01:16:12,750
IN THE CONTEXT OF A -- THAT FROM

1915
01:16:14,886 --> 01:16:17,422
MY PERSPECTIVE AND I TALKED A 

1916
01:16:17,422 --> 01:16:19,057
LITTLE ABOUT THIS BEFORE, UNDUE 

1917
01:16:19,057 --> 01:16:23,227
INDUCEMENT SORT OF KICKS IN WHEN

1918
01:16:23,227 --> 01:16:25,663
THE BENEFIT THAT THE PERSON MAY 

1919
01:16:25,663 --> 01:16:30,768
RECEIVE AND IN THIS CASE IT'S A 

1920
01:16:30,768 --> 01:16:33,671
POTENTIAL BENEFIT FROM THE 

1921
01:16:33,671 --> 01:16:34,505
COMPOUND AND SOME FINANCIAL 

1922
01:16:34,505 --> 01:16:38,576
BENEFIT OF HAVING STANDARD OF 

1923
01:16:38,576 --> 01:16:40,845
CARE AVAILABLE.  OVERWHELMS 

1924
01:16:40,845 --> 01:16:44,215
THEIR CONCERNS ABOUT THE RISK OF

1925
01:16:44,215 --> 01:16:46,184
THE INTERVENTION THAT THEY MAY 

1926
01:16:46,184 --> 01:16:48,286
BE RANDOMIZED TO.  SO ANOTHER 

1927
01:16:48,286 --> 01:16:51,255
WAY TO SAY THAT IS THAT BECAUSE 

1928
01:16:51,255 --> 01:16:53,391
THE COVERAGE OF THE STANDARD OF 

1929
01:16:53,391 --> 01:16:56,427
CARE IS SO VALUABLE TO THEM, IT 

1930
01:16:56,427 --> 01:16:57,362
WOULD SWAMP THEIR ABILITY TO 

1931
01:16:57,362 --> 01:17:00,365
MAKE AN INFORMED DECISION ABOUT 

1932
01:17:00,365 --> 01:17:01,466
ENROLLMENT BECAUSE THEY'RE GOING

1933
01:17:01,466 --> 01:17:05,269
TO UNDERESTIMATE OR DIMINISH THE

1934
01:17:05,269 --> 01:17:06,404
POTENTIAL RISK FOR THEM.  AND 

1935
01:17:06,404 --> 01:17:08,706
FROM MY PERSPECTIVE, I DON'T 

1936
01:17:08,706 --> 01:17:10,608
THINK THAT PROVIDING STANDARD OF

1937
01:17:10,608 --> 01:17:11,576
COVERAGE FOR STANDARD OF CARE 

1938
01:17:11,576 --> 01:17:15,246
FOR THOSE OTHER FOLKS IS 

1939
01:17:15,246 --> 01:17:16,247
PROBLEMATIC.  AND YOU GUYS 

1940
01:17:16,247 --> 01:17:20,685
BROUGHT THIS UP.  CATEGORICALLY 

1941
01:17:20,685 --> 01:17:21,719
EXCLUDING UNINSURED PATIENTS 

1942
01:17:21,719 --> 01:17:23,955
WOULD BE A DISPROPORTIONATE 

1943
01:17:23,955 --> 01:17:26,557
RESPONSE TO UNDUE INDUCEMENT 

1944
01:17:26,557 --> 01:17:27,592
CONCERNS AND WOULD LIKELY 

1945
01:17:27,592 --> 01:17:28,659
VIOLATE THAT PRINCIPLE ABOVE 

1946
01:17:28,659 --> 01:17:31,195
THAT WE TALKED ABOUT IN TERMS OF

1947
01:17:31,195 --> 01:17:32,663
FAIR PARTICIPANT SELECTION.  SO 

1948
01:17:32,663 --> 01:17:36,167
I WANT TO END WITH SORT OF A 

1949
01:17:36,167 --> 01:17:39,771
MORE META QUESTION IN THINKING 

1950
01:17:39,771 --> 01:17:42,673
ABOUT CLINICAL TRIALS AND THE 

1951
01:17:42,673 --> 01:17:45,910
ETHICS OF CLINICAL TRIALS.  

1952
01:17:45,910 --> 01:17:47,678
SOMETHING THAT AGAIN, I'M GOING 

1953
01:17:47,678 --> 01:17:52,216
TO SORRY, IT HAS TO RECONNECT 

1954
01:17:52,216 --> 01:17:55,253
ITSELF.  MY LAST QUESTION, IF 

1955
01:17:55,253 --> 01:17:57,121
WE'RE THINKING ABOUT FAIRNESS, 

1956
01:17:57,121 --> 01:18:01,292
RIGHT?  IS IT, SO, AGAIN, JUST 

1957
01:18:01,292 --> 01:18:02,660
TO REMIND YOU, WE HAVE THREE 

1958
01:18:02,660 --> 01:18:04,462
SITES THAT ARE GOING TO ENROLL 

1959
01:18:04,462 --> 01:18:10,201
PEOPLE WHO ARE UNINSURED OR 

1960
01:18:10,201 --> 01:18:11,869
REGARDLESS OF THEIR INSURED 

1961
01:18:11,869 --> 01:18:13,004
STATUS AND ANOTHER SITE THAT 

1962
01:18:13,004 --> 01:18:15,306
WANTS TO EXCLUDE THEM.  NOW IS 

1963
01:18:15,306 --> 01:18:19,577
THAT FAIR TO OTHER PARTICIPANTS?

1964
01:18:19,577 --> 01:18:22,680
RIGHT?  SO ANOTHER WAY TO THINK 

1965
01:18:22,680 --> 01:18:27,485
ABOUT THAT IS, IF COVERING THAT 

1966
01:18:27,485 --> 01:18:30,955
COST FOR THOSE WHO HAVE 

1967
01:18:30,955 --> 01:18:31,622
INSURANCE OR CHARGING INSURANCE 

1968
01:18:31,622 --> 01:18:33,191
IS COVERING THE COST FOR THOSE 

1969
01:18:33,191 --> 01:18:38,229
WHO ARE UNINSURED UNFAIR TO THE 

1970
01:18:38,229 --> 01:18:40,231
LARGER PARTICIPANT POPULATION?  

1971
01:18:40,231 --> 01:18:45,236
AND/OR IS KOVRPING IT -- 

1972
01:18:45,236 --> 01:18:46,871
COVERING IT AT ONE SITE UNFAIR 

1973
01:18:46,871 --> 01:18:48,172
TO THE OTHER SITES. 

1974
01:18:48,172 --> 01:18:49,407
I MENTION THESE JUST IN THE 

1975
01:18:49,407 --> 01:18:51,008
SENSE THAT YOU GENERALLY WHEN 

1976
01:18:51,008 --> 01:18:52,810
WE'RE THINKING ABOUT THE CONDUCT

1977
01:18:52,810 --> 01:18:55,146
OF CLINICAL TRIALS, WE'RE 

1978
01:18:55,146 --> 01:18:57,181
THINKING, YOU KNOW, ABOUT THE 

1979
01:18:57,181 --> 01:18:59,050
CLINICAL TRIAL ITSELF.  WE'RE 

1980
01:18:59,050 --> 01:19:00,785
THINKING ABOUT THE RISK TO 

1981
01:19:00,785 --> 01:19:03,955
PARTICIPANTS, THE BENEFITS TO 

1982
01:19:03,955 --> 01:19:04,922
PARTICIPANTS, MAKING SURE THAT 

1983
01:19:04,922 --> 01:19:08,493
IS BALANCED, CONSIDERING 

1984
01:19:08,493 --> 01:19:10,261
INFORMED CONSENT.  INCREASING 

1985
01:19:10,261 --> 01:19:13,931
THE LIKELIHOOD THAT PEOPLE WILL 

1986
01:19:13,931 --> 01:19:15,500
UNDERSTAND.  SOMETIMES WE HAVE 

1987
01:19:15,500 --> 01:19:17,902
TO LOOK AT HOW THE TRIAL ITSELF 

1988
01:19:17,902 --> 01:19:21,906
IS BEING DESIGNED.  AND HOW 

1989
01:19:21,906 --> 01:19:25,109
DIFFERENT SITES OR DIFFERENT 

1990
01:19:25,109 --> 01:19:27,678
POLICIES OR DIFFERENT CRITERIA 

1991
01:19:27,678 --> 01:19:37,655
MIGHT INVITE DISPARITIES OR 

1992
01:19:37,655 --> 01:19:40,224
INEQUALITIES AMONG SITES AND/OR 

1993
01:19:40,224 --> 01:19:41,826
PARTICIPANTS AND SHOULD IT BE A 

1994
01:19:41,826 --> 01:19:44,095
GOAL THAT EVERYONE IS DOING THE 

1995
01:19:44,095 --> 01:19:46,264
SAME THING.  IS THAT A 

1996
01:19:46,264 --> 01:19:48,699
REASONABLE THING FOR US TO THINK

1997
01:19:48,699 --> 01:19:52,036
ABOUT WHEN WE'RE EVALUATING A 

1998
01:19:52,036 --> 01:19:53,371
CLINICAL TRIAL.  I DON'T THINK 

1999
01:19:53,371 --> 01:19:56,107
WE -- SO I WILL SAY FROM MY 

2000
01:19:56,107 --> 01:20:00,912
EXPERIENCE OF BEING ON MANY 

2001
01:20:00,912 --> 01:20:03,247
IRBS, I AM NOT SURE THAT THE 

2002
01:20:03,247 --> 01:20:05,416
AVERAGE INSTITUTIONAL REVIEW 

2003
01:20:05,416 --> 01:20:07,685
BOARD THINKS AS MUCH AS THEY 

2004
01:20:07,685 --> 01:20:10,454
SHOULD IN SOME CASES ABOUT 

2005
01:20:10,454 --> 01:20:12,423
WHETHER OR NOT SOME OF THESE 

2006
01:20:12,423 --> 01:20:13,491
ARRANGEMENTS ARE FAIR OR NOT.  

2007
01:20:13,491 --> 01:20:17,361
AND SO I AM WONDERING, I WOULD 

2008
01:20:17,361 --> 01:20:21,332
LIKE TO JUST OPEN THE DISCUSSION

2009
01:20:21,332 --> 01:20:22,300
AND FOLKS WHO ARE HERE ARE 

2010
01:20:22,300 --> 01:20:25,670
WELCOME TO GO TO THE MICS AND/OR

2011
01:20:25,670 --> 01:20:28,439
FOLKS OUT IN VIDEO LAND CAN POST

2012
01:20:28,439 --> 01:20:32,977
RESPONSES TO MY QUESTION ON THE 

2013
01:20:32,977 --> 01:20:38,082
DISCUSSION BOARD OF WHAT -- 

2014
01:20:38,082 --> 01:20:40,384
IS -- WHETHER OR NOT TO INCLUDE 

2015
01:20:40,384 --> 01:20:45,389
PARTICIPANTS WHO ARE UNINSURED. 

2016
01:20:45,389 --> 01:20:48,426
SHOULD WE SAY IN A SYSTEM THAT 

2017
01:20:48,426 --> 01:20:51,796
IS ALREADY UNFAIR THAT IT WOULD 

2018
01:20:51,796 --> 01:20:53,097
BE INAPPROPRIATE TO ALWAYS OR 

2019
01:20:53,097 --> 01:20:54,865
CONSIDER TO EXCLUDE PEOPLE WHO 

2020
01:20:54,865 --> 01:20:58,603
ARE UNINSURED?  OR DO WE SAY, 

2021
01:20:58,603 --> 01:21:02,707
WELL, GIVEN THAT OUR SYSTEM IS 

2022
01:21:02,707 --> 01:21:05,309
BY DEFINITION UNFAIR WE 

2023
01:21:05,309 --> 01:21:07,845
SHOULDN'T DOUBLY PLACE A BURDEN 

2024
01:21:07,845 --> 01:21:09,847
ON THOSE WHO ARE UNINSURED AND 

2025
01:21:09,847 --> 01:21:11,816
THEREFORE SHOULD MAKE SURE WE 

2026
01:21:11,816 --> 01:21:13,551
INCLUDE THEM AS OFTEN AS WE CAN.

2027
01:21:13,551 --> 01:21:14,885
DOES ANYBODY HAVE ANY SORT OF 

2028
01:21:14,885 --> 01:21:21,392
OPINION OR THOUGHTS ABOUT THAT? 

2029
01:21:21,392 --> 01:21:23,227
AND I WILL MENTION THIS IS A 

2030
01:21:23,227 --> 01:21:25,663
UNIQUE ISSUE FOR US IN THE 

2031
01:21:25,663 --> 01:21:27,064
UNITED STATES IN THAT IT'S NOT 

2032
01:21:27,064 --> 01:21:29,934
THE CASE THAT EVERYBODY HAS 

2033
01:21:29,934 --> 01:21:31,569
ACCESS TO HEALTH CARE.  ANOTHER 

2034
01:21:31,569 --> 01:21:33,537
WAY OF SAYING THAT WOULD BE IS 

2035
01:21:33,537 --> 01:21:34,772
WE DON'T HAVE TO HAVE THIS 

2036
01:21:34,772 --> 01:21:38,109
CONVERSATION IN OTHER SETTINGS 

2037
01:21:38,109 --> 01:21:40,177
WHERE BASIC HEALTH CARE IS 

2038
01:21:40,177 --> 01:21:42,113
PROVIDED TO EVERYONE.  RIGHT?  

2039
01:21:42,113 --> 01:21:44,482
ONE WAY TO ADDRESS THE ETHICAL 

2040
01:21:44,482 --> 01:21:46,417
CONCERN IS TO SAY, WELL, LET'S 

2041
01:21:46,417 --> 01:21:48,219
MAKE SURE EVERYBODY'S INSURED.  

2042
01:21:48,219 --> 01:21:50,688
WE CAN'T DO THAT.  SO THEN WE 

2043
01:21:50,688 --> 01:21:52,623
HAVE TO SORT OF MANAGE IS IT 

2044
01:21:52,623 --> 01:21:54,692
OKAY, SHOULD WE ALWAYS INCLUDE 

2045
01:21:54,692 --> 01:21:56,394
OR SHOULD WE EXCLUDE?  AND WHAT 

2046
01:21:56,394 --> 01:21:58,596
WOULD THE JUSTIFICATIONS FOR 

2047
01:21:58,596 --> 01:22:01,065
THAT BE?  ANY THOUGHTS?  DANIEL,

2048
01:22:01,065 --> 01:22:03,801
YOU'RE KIND OF MOVING TOWARDS 

2049
01:22:03,801 --> 01:22:05,736
THE MIC?  WELL, IF YOU WOULDN'T 

2050
01:22:05,736 --> 01:22:07,905
MIND GO TO THE MIC SO FOLKS OUT 

2051
01:22:07,905 --> 01:22:10,374
IN THE WORLD CAN HEAR YOU A 

2052
01:22:10,374 --> 01:22:15,446
LITTLE BETTER.

2053
01:22:15,446 --> 01:22:16,781
>> AUDIENCE: YEAH I CAN
SEE 

2054
01:22:16,781 --> 01:22:19,517
MAYBE AN ARGUMENT FOR EXCLUDING 

2055
01:22:19,517 --> 01:22:22,853
THE UNINSURED IF THE COSTS OF 

2056
01:22:22,853 --> 01:22:25,189
INCLUDING THEM WOULD 

2057
01:22:25,189 --> 01:22:26,757
EXTERNALIZED SPECIFICALLY ONTO 

2058
01:22:26,757 --> 01:22:29,126
THE INSURED PARTICIPANTS LIKE IF

2059
01:22:29,126 --> 01:22:32,463
THEY RECEIVED LESS COMPENSATION 

2060
01:22:32,463 --> 01:22:34,398
BECAUSE MORE MONEY HAD TO BE 

2061
01:22:34,398 --> 01:22:39,236
GIVEN TO, LIKE, PAY FOR THE CARE

2062
01:22:39,236 --> 01:22:41,672
OF THE INUNINSURED BUT EVEN THEN

2063
01:22:41,672 --> 01:22:43,874
IT SEEMS LIKE THE OTHER SIDE OF 

2064
01:22:43,874 --> 01:22:45,609
JUST -- OF THAT IS YOU HAVE TO 

2065
01:22:45,609 --> 01:22:48,145
EXCLUDE A BUNCH OF UNINSURED 

2066
01:22:48,145 --> 01:22:49,447
POSSIBLE PARTICIPANTS AND THAT 

2067
01:22:49,447 --> 01:22:51,749
JUST SEEMS TO BE AN OVERRIDING, 

2068
01:22:51,749 --> 01:22:52,416
LIKE, ISSUE. 

2069
01:22:52,416 --> 01:22:56,153
THAT JUST SEEMS PARTICULARLY 

2070
01:22:56,153 --> 01:22:57,988
DISCRIMINATORY TO ME SO YEAH, I 

2071
01:22:57,988 --> 01:22:59,256
THINK IT WOULD MAKE MORE SENSE 

2072
01:22:59,256 --> 01:23:02,993
TO JUST HAVE, LIKE, IDEALLY SOME

2073
01:23:02,993 --> 01:23:06,464
SORT OF INSTITUTION, AT LEAST IN

2074
01:23:06,464 --> 01:23:10,234
THIS CASE, YOU KNOW, SUBSIDIZE 

2075
01:23:10,234 --> 01:23:11,936
AND PAY FOR THE UNINSURED 

2076
01:23:11,936 --> 01:23:13,971
MEDICAL CARE AND I GUESS EVEN 

2077
01:23:13,971 --> 01:23:15,039
MORE IDEALLY WE WOULD HAVE A 

2078
01:23:15,039 --> 01:23:16,474
DIFFERENT INSURANCE REGIME WHERE

2079
01:23:16,474 --> 01:23:18,476
IT'S NOT PRIVATE IN SUCH A WAY 

2080
01:23:18,476 --> 01:23:22,480
IT WORKS WHERE PEOPLE ARE 

2081
01:23:22,480 --> 01:23:24,315
UNINSURED.

2082
01:23:24,315 --> 01:23:27,718
>> HOLLY: FROM THE
PERSPECTIVE 

2083
01:23:27,718 --> 01:23:31,255
OF AN ACADEMIC MEDICAL CENTER, 

2084
01:23:31,255 --> 01:23:34,925
WHEN I WAS AT HOPKINS THE SCHOOL

2085
01:23:34,925 --> 01:23:37,128
OF MEDICINE WOULD NOT ROUTINELY 

2086
01:23:37,128 --> 01:23:38,629
EXCLUDE INDIVIDUALS BASED ON 

2087
01:23:38,629 --> 01:23:42,233
THEIR INSURANCE STATUS.  WHAT 

2088
01:23:42,233 --> 01:23:44,135
THEY WOULD DO IS ONCE SOMEONE IS

2089
01:23:44,135 --> 01:23:44,902
IDENTIFIED AS ELIGIBLE AND 

2090
01:23:44,902 --> 01:23:48,405
INSURANCE WAS HIGHLIGHTED AS A 

2091
01:23:48,405 --> 01:23:50,641
CONCERN, THEY WOULD BASICALLY 

2092
01:23:50,641 --> 01:23:52,476
SEND THE PERSON TO THE SOCIAL 

2093
01:23:52,476 --> 01:23:56,814
WORKER WHO IS IN CHARGE OF 

2094
01:23:56,814 --> 01:23:57,681
MAKING SURE THEY'RE RECEIVING 

2095
01:23:57,681 --> 01:23:58,849
ALL THE BENEFITS THEY'RE 

2096
01:23:58,849 --> 01:24:00,351
ELIGIBLE FOR.  SOMEONE WHO IS 

2097
01:24:00,351 --> 01:24:02,720
NEVER ENROLLED IN MEDICAID OR 

2098
01:24:02,720 --> 01:24:04,388
LIVES IN A STATE LIKE MARYLAND 

2099
01:24:04,388 --> 01:24:05,623
WHERE THERE ARE SAFETY NET 

2100
01:24:05,623 --> 01:24:07,224
PROGRAMS THAT INDIVIDUALS CAN 

2101
01:24:07,224 --> 01:24:08,292
APPLY FOR TO GET THEIR HEALTH 

2102
01:24:08,292 --> 01:24:11,695
CARE INSURED.  SO THAT'S, I 

2103
01:24:11,695 --> 01:24:14,598
THINK THAT'S ONE WAY, IT DOESN'T

2104
01:24:14,598 --> 01:24:15,566
ELIMINATE THE PROBLEM, RIGHT?  

2105
01:24:15,566 --> 01:24:18,869
THERE MAY BE SOME INDIVIDUALS, 

2106
01:24:18,869 --> 01:24:21,572
RIGHT, WHO JUST ARE NOT ELIGIBLE

2107
01:24:21,572 --> 01:24:24,141
FOR -- THEY MAKE TOO MUCH OR 

2108
01:24:24,141 --> 01:24:25,776
THEY'RE MALE OR THEY'RE NOT 

2109
01:24:25,776 --> 01:24:27,444
PREGNANT OR ALL SORTS OF 

2110
01:24:27,444 --> 01:24:29,146
REASONS.  THEY MAY NOT QUALIFY 

2111
01:24:29,146 --> 01:24:32,082
FOR ANY OF THE PUBLIC BENEFITS 

2112
01:24:32,082 --> 01:24:34,985
AVAILABLE TO THEM THAT THEY WILL

2113
01:24:34,985 --> 01:24:37,922
BE UNINSURED.  THEY DON'T HAVE A

2114
01:24:37,922 --> 01:24:39,757
JOB.  MOST PEOPLE GET INSURANCE 

2115
01:24:39,757 --> 01:24:41,759
THROUGH THEIR JOBS.  SO THAT'S A

2116
01:24:41,759 --> 01:24:46,497
WAY OF AT LEAST TRYING TO CLOSE 

2117
01:24:46,497 --> 01:24:49,166
THAT GAP.  AND THE OTHER THING 

2118
01:24:49,166 --> 01:24:52,369
TO THINK ABOUT, I MEAN, MY -- 

2119
01:24:52,369 --> 01:24:55,239
THE MOST EXPERIENCE I HAVE AS IT

2120
01:24:55,239 --> 01:24:57,942
RELATE TO INCLUSION OF 

2121
01:24:57,942 --> 01:25:02,980
INDIVIDUALS WHO ARE UNINSURED IS

2122
01:25:02,980 --> 01:25:03,380
RAE

2123
01:25:03,380 --> 01:25:06,283
 -- EARLIER IN THE HIV EPIDEMIC,

2124
01:25:06,283 --> 01:25:07,785
THERE WERE TRIALS THAT WERE OPEN

2125
01:25:07,785 --> 01:25:08,619
BACK THEN. 

2126
01:25:08,619 --> 01:25:10,855
YOU WERE RANDOMIZED TO A PLACEBO

2127
01:25:10,855 --> 01:25:13,591
OR AN ACTIVE COMPOUND, YOU KNOW,

2128
01:25:13,591 --> 01:25:16,460
AS TIME WENT BY, THERE WOULD BE 

2129
01:25:16,460 --> 01:25:19,230
MANY FEWER PLACEBO CONTROLLED 

2130
01:25:19,230 --> 01:25:22,066
TRIALS BUT STILL TRIALS THAT 

2131
01:25:22,066 --> 01:25:23,067
TESTED THE STANDARD TOWARDS THE 

2132
01:25:23,067 --> 01:25:27,771
NEW NOVEL THING.  THAT GROUP BY 

2133
01:25:27,771 --> 01:25:29,240
DEMOGRAPHICALLY WERE MUCH LESS 

2134
01:25:29,240 --> 01:25:31,475
LIKELY TO BE INSURED THAN THE 

2135
01:25:31,475 --> 01:25:34,478
AVERAGE PERSON.  IN TERMS OF 

2136
01:25:34,478 --> 01:25:36,480
THEIR ABILITY TO QUALIFY FOR 

2137
01:25:36,480 --> 01:25:38,015
DISABILITY ON MEDICARE, THEIR 

2138
01:25:38,015 --> 01:25:41,051
ABILITY TO HOLD DOWN A JOB, ET 

2139
01:25:41,051 --> 01:25:44,154
CETERA.  SO, YOU KNOW, A BLANKET

2140
01:25:44,154 --> 01:25:47,224
EXCLUSION OF EXCLUDING THOSE 

2141
01:25:47,224 --> 01:25:48,626
INDIVIDUALS MEANT THAT THEY 

2142
01:25:48,626 --> 01:25:50,227
WOULD BASICALLY BE WITHOUT 

2143
01:25:50,227 --> 01:25:53,731
HEALTH CARE FOR A PERIOD OF 

2144
01:25:53,731 --> 01:25:55,599
TIME.  OR THEY WOULD EXTEND THE 

2145
01:25:55,599 --> 01:25:57,368
TIME WITH WHICH THEY DIDN'T HAVE

2146
01:25:57,368 --> 01:25:58,802
ACCESS TO HEALTH CARE.  SO 

2147
01:25:58,802 --> 01:26:01,372
REALLY SAW THIS AS AN 

2148
01:26:01,372 --> 01:26:03,207
OPPORTUNITY TO HAVE STABLE 

2149
01:26:03,207 --> 01:26:05,943
HEALTH CARE.  WHICH, AGAIN, 

2150
01:26:05,943 --> 01:26:07,878
ETHICALLY I FIND PROBLEMATIC BUT

2151
01:26:07,878 --> 01:26:09,313
I'M NOT GOING TO SAY AND 

2152
01:26:09,313 --> 01:26:10,681
THEREFORE WE SHOULD EXCLUDE THEM

2153
01:26:10,681 --> 01:26:13,784
BECAUSE IF THAT'S THE ONLY WAY 

2154
01:26:13,784 --> 01:26:16,387
TO HAVE ACCESS TO STABLE HEALTH 

2155
01:26:16,387 --> 01:26:19,223
CARE THERE'S A TRADE-OFF THERE. 

2156
01:26:19,223 --> 01:26:23,794
RIGHT?  AND MY INCLINATION IS TO

2157
01:26:23,794 --> 01:26:25,396
SAY IF THAT'S THE ONLY WAY TO 

2158
01:26:25,396 --> 01:26:27,231
HAVE ACCESS IT SEEMS, GIVEN THE 

2159
01:26:27,231 --> 01:26:29,633
BACKGROUND CONDITIONS, GIVEN THE

2160
01:26:29,633 --> 01:26:31,001
CONTEXTUAL CONDITIONS IT SEEMS, 

2161
01:26:31,001 --> 01:26:33,370
YOU KNOW, NOT ONLY REASONABLE 

2162
01:26:33,370 --> 01:26:35,172
BUT IMPORTANT TO FACILITATE 

2163
01:26:35,172 --> 01:26:38,208
ENROLLMENT IN CLINICAL TRIALS 

2164
01:26:38,208 --> 01:26:43,314
AND ON THE FIRST DAY OF CLASS 

2165
01:26:43,314 --> 01:26:46,550
CHRISTINE SHOWED, THERE WERE A 

2166
01:26:46,550 --> 01:26:48,152
SERIES OF ERAS OF CLINICAL 

2167
01:26:48,152 --> 01:26:51,221
RESEARCH AND ONE OF THOSE ERAS 

2168
01:26:51,221 --> 01:26:54,425
WAS THE EARLY ADVOCACY FOR HIV 

2169
01:26:54,425 --> 01:26:57,294
AND THE SIGNS THAT MANY WOULD 

2170
01:26:57,294 --> 01:27:00,197
HOLD HERE AT THE NIH AND FDA IS 

2171
01:27:00,197 --> 01:27:01,932
CLINICAL TRIALS IS HEALTH CARE. 

2172
01:27:01,932 --> 01:27:03,567
RIGHT?  AND SOME PEOPLE SAID, 

2173
01:27:03,567 --> 01:27:04,401
WELL, YOU KNOW, THAT SHOULDN'T 

2174
01:27:04,401 --> 01:27:07,638
BE THE CASE, RIGHT?  LIKE 

2175
01:27:07,638 --> 01:27:09,640
CLINICAL -- YOU SHOULDN'T THINK 

2176
01:27:09,640 --> 01:27:10,708
OF CLINICAL TRIALS AS HEALTH 

2177
01:27:10,708 --> 01:27:12,643
CARE, THAT'S A THERAPEUTIC 

2178
01:27:12,643 --> 01:27:13,744
MISCONCEPTION BUT FOR THEM IT 

2179
01:27:13,744 --> 01:27:15,546
WAS LITERAL IN THE SENSE OF 

2180
01:27:15,546 --> 01:27:17,381
HAVING ACCESS TO A CLINICAL 

2181
01:27:17,381 --> 01:27:19,416
TRIAL MEANS THAT I MIGHT HAVE 

2182
01:27:19,416 --> 01:27:21,518
ACCESS TO SUSTAINABLE HEALTH 

2183
01:27:21,518 --> 01:27:25,489
CARE.  SO, THAT'S IT FOR ME 

2184
01:27:25,489 --> 01:27:28,225
TODAY.  WE ARE GOING TO RETURN 

2185
01:27:28,225 --> 01:27:32,696
AT 10:10.  I'M VERY EXCITED TO 

2186
01:27:32,696 --> 01:27:38,002
HAVE A GROUP FROM THE PATIENT 

2187
01:27:38,002 --> 01:27:40,738
ADVISORY GROUP FROM THE CLINICAL

2188
01:27:40,738 --> 01:27:43,774
CENTER WHO WILL THEIR EXPERIENCE

2189
01:27:43,774 --> 01:27:45,876
OF BEING PARTICIPANTS OF TRIALS 

2190
01:27:45,876 --> 01:27:47,611
HERE AT THE CLINICAL CENTER.  SO

2191
01:27:47,611 --> 01:27:48,230
WE WILL REGROUP AT 10:10.  THANK
YOU. 

2192
01:27:54,066 --> 01:27:59,438
>> WE ARE GETTING GUESTS
FROM A 

2193
01:27:59,438 --> 01:28:00,840
DISTANCE ON THE SCREEN.  SO 

2194
01:28:00,840 --> 01:28:02,675
FIRST I WANTED TO WELCOME AND 

2195
01:28:02,675 --> 01:28:04,043
THANK OUR MEMBERS FROM THE 

2196
01:28:04,043 --> 01:28:06,512
PARTICIPANT ADVISORY GROUP FOR 

2197
01:28:06,512 --> 01:28:10,783
JOINING US TODAY MY GOAL, OUR 

2198
01:28:10,783 --> 01:28:13,286
GOAL IS TO GIVE YOU INSIGHT INTO

2199
01:28:13,286 --> 01:28:15,187
WHAT IT IS LIKE TO BE A 

2200
01:28:15,187 --> 01:28:16,822
PARTICIPANT IN A RESEARCH 

2201
01:28:16,822 --> 01:28:18,958
PROTOCOL HERE AT THE CLINICAL 

2202
01:28:18,958 --> 01:28:22,194
CENTER AND I'M GOING TO BE A BIT

2203
01:28:22,194 --> 01:28:24,764
OF AN MC AND ASK FOLKS 

2204
01:28:24,764 --> 01:28:26,332
QUESTIONS.  AND THEN WE WILL 

2205
01:28:26,332 --> 01:28:27,933
OPEN IT UP FOR QUESTIONS FROM 

2206
01:28:27,933 --> 01:28:30,102
THOSE OF YOU WHO ARE HERE IN THE

2207
01:28:30,102 --> 01:28:32,605
AUDIENCE.  AND THOSE OF YOU WHO 

2208
01:28:32,605 --> 01:28:37,109
ARE JOINING US BY VIDEO SO FIRST

2209
01:28:37,109 --> 01:28:38,611
I WANT TO GO AROUND THE ROOM, 

2210
01:28:38,611 --> 01:28:40,579
WE'LL CALL IT.  AND HAVE YOU 

2211
01:28:40,579 --> 01:28:44,350
EACH INTRODUCE YOURSELVES TO THE

2212
01:28:44,350 --> 01:28:51,691
GROUP AND THEN WE'LL GET INTO 

2213
01:28:51,691 --> 01:28:59,432
QUESTIONS ABOUT YOUR EXPERIENCE.

2214
01:28:59,432 --> 01:29:02,902
>> HELLO, MY NAME IS ELLEN
AND I

2215
01:29:02,902 --> 01:29:07,073
HAVE BEEN A PATIENT AT NIH SINCE

2216
01:29:07,073 --> 01:29:11,644
2001.  SO A VERY LONG TIME.  I 

2217
01:29:11,644 --> 01:29:14,413
WAS ELIGIBLE FOR A PROTOCOL 

2218
01:29:14,413 --> 01:29:18,084
BECAUSE I HAD SEVERE 

2219
01:29:18,084 --> 01:29:19,852
HYPOGLYCEMIA UNAWARENESS WHERE I

2220
01:29:19,852 --> 01:29:22,621
WOULD PASS OUT WITH NO WARNING 

2221
01:29:22,621 --> 01:29:24,690
FROM LOW BLOOD SUGAR.  I'VE BEEN

2222
01:29:24,690 --> 01:29:27,493
A DIABETIC SINCE I WAS 13.  A 

2223
01:29:27,493 --> 01:29:32,598
MERE TEN YEARS AGO.  AND SO I 

2224
01:29:32,598 --> 01:29:35,401
KNEW WHAT A LOW BLOOD SUGAR WAS 

2225
01:29:35,401 --> 01:29:38,971
LIKE.  BUT I KIND OF LOST THE 

2226
01:29:38,971 --> 01:29:48,581
ABILITY TO SENSE THAT AND THEN I

2227
01:29:48,581 --> 01:29:50,649
WOULD JUST CRASH AND SOMETIMES 

2228
01:29:50,649 --> 01:29:55,121
IT WAS WHEN I WAS  DRIVING THE 

2229
01:29:55,121 --> 01:29:57,456
CAR AND I ALWAYS KNEW TO PULL 

2230
01:29:57,456 --> 01:29:58,858
OVER AND STOP THE CAR AND THE 

2231
01:29:58,858 --> 01:30:00,025
EMERGENCY PEOPLE WOULD BE THERE 

2232
01:30:00,025 --> 01:30:01,327
TAKING ME OUT OF THE CAR, TAKING

2233
01:30:01,327 --> 01:30:03,496
ME TO THE HOSPITAL AND, YOU 

2234
01:30:03,496 --> 01:30:06,699
KNOW, IT'S NOT A GOOD THING WHEN

2235
01:30:06,699 --> 01:30:08,801
THE EMERGENCY PEOPLE KNOW YOU ON

2236
01:30:08,801 --> 01:30:10,469
A FIRST NAME BASIS.  THEY HAD 

2237
01:30:10,469 --> 01:30:13,506
COME SO MANY TIMES TO MY HOME OR

2238
01:30:13,506 --> 01:30:16,108
TO MY OFFICE WHEN I WAS WORKING.

2239
01:30:16,108 --> 01:30:19,578
SO I STARTED TO LOOK INTO 

2240
01:30:19,578 --> 01:30:21,547
RESEARCH TO FIND OUT WHAT WAS 

2241
01:30:21,547 --> 01:30:24,717
GOING ON AND MY FATHER HEARD 

2242
01:30:24,717 --> 01:30:27,453
ABOUT AN EYE LET CELL TRANSPLANT

2243
01:30:27,453 --> 01:30:30,389
ON THE NEWS AND SO HE CALLED ME 

2244
01:30:30,389 --> 01:30:32,191
RIGHT UP AND SAID ELLEN YOU GOT 

2245
01:30:32,191 --> 01:30:33,225
TO CHECK THIS OUT. 

2246
01:30:33,225 --> 01:30:36,729
SO I STARTED TO CHECK IT OUT AND

2247
01:30:36,729 --> 01:30:39,598
I DID GET AN EYE LET CELL 

2248
01:30:39,598 --> 01:30:43,002
TRANSPLANT IN 2001.  DR. DAVID 

2249
01:30:43,002 --> 01:30:45,037
HARLAN WAS MY PHYSICIAN.  HE WAS

2250
01:30:45,037 --> 01:30:47,773
HERE AT NIH FOR MANY YEARS.  

2251
01:30:47,773 --> 01:30:50,609
HE HAS SINCE MOVED ON.  I HAVE 

2252
01:30:50,609 --> 01:30:54,213
SINCE MOVED ON TOO.  I HAD 

2253
01:30:54,213 --> 01:30:56,882
FUNCTIONING EYE LETS THAT THEY 

2254
01:30:56,882 --> 01:30:59,452
TOOK THE BETA CELLS WHICH ARE 

2255
01:30:59,452 --> 01:31:00,953
THE LITTLE TINY CELLS THAT 

2256
01:31:00,953 --> 01:31:03,322
PRODUCE INSULIN IN YOUR 

2257
01:31:03,322 --> 01:31:05,691
PANCREAS, THEY TOOK THOSE FROM A

2258
01:31:05,691 --> 01:31:12,097
CADAVER AND PUT THEM INTO MY 

2259
01:31:12,097 --> 01:31:14,099
LIVER.  THEY'D LIVED HAPPILY IN 

2260
01:31:14,099 --> 01:31:18,537
MY LIVER FOR ABOUT TEN YEARS SO 

2261
01:31:18,537 --> 01:31:20,473
I NO LONGER HAD TO TAKE SHOTS 

2262
01:31:20,473 --> 01:31:22,541
AND NO LONGER PASSING OUT 

2263
01:31:22,541 --> 01:31:24,243
WITHOUT WARNING SO THAT WAS THE 

2264
01:31:24,243 --> 01:31:25,845
CRITICAL PART AND FOR ME THAT 

2265
01:31:25,845 --> 01:31:29,381
WAS THE SUCCESS OF THE CLINICAL 

2266
01:31:29,381 --> 01:31:31,884
TRIAL.  SO I THANK ALL OF YOU 

2267
01:31:31,884 --> 01:31:34,119
WHO ARE INVOLVED IN RESEARCH 

2268
01:31:34,119 --> 01:31:35,688
BECAUSE WITHOUT THAT ADVANCES 

2269
01:31:35,688 --> 01:31:39,758
LIKE THIS COULD NOT HAPPEN.  AND

2270
01:31:39,758 --> 01:31:46,932
THE OBJECT OF THE PROTOCOL WAS 

2271
01:31:46,932 --> 01:31:49,468
NOT PROOF OF PURCHASE LIKE AT 

2272
01:31:49,468 --> 01:31:54,507
THE STORE BUT A PROOF OF 

2273
01:31:54,507 --> 01:31:56,976
CONCEPT.  SEE MY CONCEPT WAS 

2274
01:31:56,976 --> 01:31:58,210
GONE.  PROOF OF CONCEPT AND THEY

2275
01:31:58,210 --> 01:32:02,181
DID PROVE THAT THAT CONCEPT DID 

2276
01:32:02,181 --> 01:32:04,416
WORK.  I WAS THE FIFTH ONE AT 

2277
01:32:04,416 --> 01:32:06,619
NIH TO HAVE IT AND THE LONGEST 

2278
01:32:06,619 --> 01:32:08,387
ONE TO HAVE FUNCTIONING EYE 

2279
01:32:08,387 --> 01:32:10,155
LETS.  I NO LONGER HAVE 

2280
01:32:10,155 --> 01:32:12,958
FUNCTIONING EYE LETS BUT THAT'S 

2281
01:32:12,958 --> 01:32:15,394
OKAY.  I'M -- THE TECHNOLOGY HAS

2282
01:32:15,394 --> 01:32:17,730
IMPROVED SO MUCH SINCE I FIRST 

2283
01:32:17,730 --> 01:32:19,632
STARTED COMING HERE.  THAT I NOW

2284
01:32:19,632 --> 01:32:23,369
HAVE AN INSULIN PUMP AND A 

2285
01:32:23,369 --> 01:32:26,672
CONTINUOUS GLUCOSE MONITOR SO MY

2286
01:32:26,672 --> 01:32:29,942
DIABETES IS VERY GOOD CONTROL.  

2287
01:32:29,942 --> 01:32:34,213
MY A 1C IS ABOUT 6.7 NOW SO I AM

2288
01:32:34,213 --> 01:32:35,381
PLEASED WITH THAT. 

2289
01:32:35,381 --> 01:32:37,917
AND MY ENDOCRINOLOGIST IS VERY 

2290
01:32:37,917 --> 01:32:39,652
PLEASED WITH THAT.  THAT'S MY 

2291
01:32:39,652 --> 01:32:42,521
BRIEF HISTORY.

2292
01:32:42,521 --> 01:32:44,189
>> THANK YOU AND WE'LL
COME BACK

2293
01:32:44,189 --> 01:32:45,157
WITH OTHER QUESTIONS.

2294
01:32:45,157 --> 01:32:46,458
>> GOOD MORNING I WANT TO
START 

2295
01:32:46,458 --> 01:32:48,360
AND SAY THANK YOU GUYS FOR BEING

2296
01:32:48,360 --> 01:32:49,061
DEDICATED TO RESEARCH BECAUSE 

2297
01:32:49,061 --> 01:32:50,663
YOU GUYS ARE HELPING US OUT A 

2298
01:32:50,663 --> 01:32:53,432
LOT I HAVE BEEN A PATIENT AT THE

2299
01:32:53,432 --> 01:32:55,801
NIH FOR TWELVE YEARS.  IT'S HARD

2300
01:32:55,801 --> 01:32:58,170
FOR ME TO PROCESS THAT BUT IT 

2301
01:32:58,170 --> 01:33:00,072
GOES BY REALLY FAST.  OFF RARE 

2302
01:33:00,072 --> 01:33:01,840
EYE DISEASE IT'S PROGRESSIVE AND

2303
01:33:01,840 --> 01:33:05,411
I'M SEEN AT THE NEI.  I'M NOT 

2304
01:33:05,411 --> 01:33:06,645
ENROLLED IN A CLINICAL TRIAL BUT

2305
01:33:06,645 --> 01:33:08,314
THEY LIKE TO COLLECT DATA ON ME 

2306
01:33:08,314 --> 01:33:12,318
TO SEE HOW THE PROGRESSION OF MY

2307
01:33:12,318 --> 01:33:13,919
VISUAL IMPAIRMENT IS GOING IT'S 

2308
01:33:13,919 --> 01:33:15,688
BEEN AN INTERESTING RIDE BUT I 

2309
01:33:15,688 --> 01:33:16,755
CAN SAY IT'S NOT NECESSARILY 

2310
01:33:16,755 --> 01:33:18,524
BEEN A ROLLER COASTER FOR ME IN 

2311
01:33:18,524 --> 01:33:20,593
THIS EXPERIENCE IT'S BEEN A 

2312
01:33:20,593 --> 01:33:21,860
STEADY TRAIN RIDE SO, YEAH.  

2313
01:33:21,860 --> 01:33:23,729
STILL HERE, STILL TRYING TO 

2314
01:33:23,729 --> 01:33:26,398
FIGURE OUT IF THEY CAN FIGURE 

2315
01:33:26,398 --> 01:33:29,034
OUT WHAT MY EYE DISEASE IS.  

2316
01:33:29,034 --> 01:33:29,234
SO....

2317
01:33:29,234 --> 01:33:30,970
>> THANK YOU.  LIAM, WHY
DON'T 

2318
01:33:30,970 --> 01:33:31,804
WE GO TO YOU.

2319
01:33:31,804 --> 01:33:36,609
>> YEAH, SO, I'VE BEEN AN
NIH 

2320
01:33:36,609 --> 01:33:38,644
PATIENT FOR ABOUT FOUR YEARS NOW

2321
01:33:38,644 --> 01:33:40,946
OR -- NO, NO, TWO YEARS, I'VE 

2322
01:33:40,946 --> 01:33:43,482
BEEN AN NIH PATIENT NOW FOR TWO 

2323
01:33:43,482 --> 01:33:47,019
YEARS AND I CURRENTLY GO TO 

2324
01:33:47,019 --> 01:33:49,288
COLLEGE AS A JUNIOR.  BUT THE 

2325
01:33:49,288 --> 01:33:51,056
RARE DISEASE THAT I HAVE IS 

2326
01:33:51,056 --> 01:33:55,127
CALLED CLASSIC CONGENITAL 

2327
01:33:55,127 --> 01:33:56,562
HYPERPLASIA WHICH BASICALLY 

2328
01:33:56,562 --> 01:33:58,897
MEANS I DON'T PRODUCE CORTISOL 

2329
01:33:58,897 --> 01:34:00,766
AND I JOINED A CLINICAL TRIAL AT

2330
01:34:00,766 --> 01:34:05,437
THE SAME TIME BACK IN 2022.  YOU

2331
01:34:05,437 --> 01:34:06,839
KNOW, IN ORDER TO HOPE -- 

2332
01:34:06,839 --> 01:34:07,673
BASICALLY THE GOAL WAS THAT YOU 

2333
01:34:07,673 --> 01:34:12,177
WANT TO REDUCE THE STEROID USAGE

2334
01:34:12,177 --> 01:34:15,414
THAT I CURRENTLY TAKE BECAUSE 

2335
01:34:15,414 --> 01:34:16,448
LONG-TERM STEROIDS IS PRETTY BAD

2336
01:34:16,448 --> 01:34:18,817
SO THE GOAL WITH THE MEDICATION 

2337
01:34:18,817 --> 01:34:20,953
IS TO REDUCE THAT STEROID USAGE 

2338
01:34:20,953 --> 01:34:22,688
AND, YOU KNOW, OVERALL I WOULD 

2339
01:34:22,688 --> 01:34:25,290
SAY THE TRIAL'S BEEN GOING 

2340
01:34:25,290 --> 01:34:26,825
PRETTY WELL.  I MEAN, THAT'S 

2341
01:34:26,825 --> 01:34:28,460
PRETTY MUCH IT TO BE HONEST.  I 

2342
01:34:28,460 --> 01:34:30,129
DON'T HAVE MUCH ELSE TO SAY.

2343
01:34:30,129 --> 01:34:32,264
>> GREAT, WELL WE'LL GET
TO SOME

2344
01:34:32,264 --> 01:34:33,799
DETAILS WHEN WE GO AROUND WITH 

2345
01:34:33,799 --> 01:34:35,634
SOME OTHER QUESTIONS.  NINA, 

2346
01:34:35,634 --> 01:34:39,838
PLEASE GO AHEAD AND INTRODUCE 

2347
01:34:39,838 --> 01:34:40,472
YOURSE

2348
01:34:40,472 --> 01:34:40,739
YOURSELF.

2349
01:34:40,739 --> 01:34:42,808
>> HI, EVERYONE, I'M NINA
AND 

2350
01:34:42,808 --> 01:34:45,544
I'M TALKING TO YOU FROM NEBRASKA

2351
01:34:45,544 --> 01:34:47,413
TODAY.  SO I'M HAPPY TO BE HERE.

2352
01:34:47,413 --> 01:34:48,747
THIS IS REALLY EXCITING 

2353
01:34:48,747 --> 01:34:49,782
DISCUSSION.  AND THIS IS AN 

2354
01:34:49,782 --> 01:34:52,084
IMPORTANT DISCUSSION AS WELL.  I

2355
01:34:52,084 --> 01:34:57,690
HAVE A RARE DISEASE CALLED 

2356
01:34:57,690 --> 01:34:59,958
GENERAL SIN'S CON DROE DYSPLASIA

2357
01:34:59,958 --> 01:35:04,630
AND I DIDN'T GET DIAGNOSED UNTIL

2358
01:35:04,630 --> 01:35:08,834
I  -- HAD PASSED IT DOWN TO MY 

2359
01:35:08,834 --> 01:35:11,103
TWO CHILDREN AND I WAS 32 YEARS 

2360
01:35:11,103 --> 01:35:12,738
OLD WHICH AFFECTS LESS THAN 30 

2361
01:35:12,738 --> 01:35:13,739
PEOPLE WORLDWIDE.  

2362
01:35:13,739 --> 01:35:16,608
SO I AM ONE OF THE OLDEST WITH 

2363
01:35:16,608 --> 01:35:19,845
THIS CONDITION STILL LIVING.  

2364
01:35:19,845 --> 01:35:24,416
AND I MOVED TO AMERICA FROM THE 

2365
01:35:24,416 --> 01:35:27,720
MIDDLE EAST.  WHEN WE FOUND OUT 

2366
01:35:27,720 --> 01:35:32,658
THAT THERE WAS PROBABLY SOME 

2367
01:35:32,658 --> 01:35:34,560
GLIMMER OF HOPE THAT WE COULD 

2368
01:35:34,560 --> 01:35:35,227
TREAT THIS CONDITION I'VE BEEN 

2369
01:35:35,227 --> 01:35:37,763
AT THE NIH, FAIRLY NEW, IN 

2370
01:35:37,763 --> 01:35:39,331
COMPARISON TO SOME OF MY OTHER 

2371
01:35:39,331 --> 01:35:41,033
COLLEAGUES HERE ON THE PANEL.  

2372
01:35:41,033 --> 01:35:49,775
I'VE BEEN HERE SINCE 2022.  AND 

2373
01:35:49,775 --> 01:35:55,581
WE ARE UNDER THE CARE OF A 

2374
01:35:55,581 --> 01:35:57,683
DOCTOR AND WILL BE PART OF A 

2375
01:35:57,683 --> 01:35:59,518
CLINICAL TRIAL AND I WILL BE THE

2376
01:35:59,518 --> 01:36:02,087
FIRST PATIENT TREATED WITH AN 

2377
01:36:02,087 --> 01:36:02,621
INVERSE AGONIST FOR MY 

2378
01:36:02,621 --> 01:36:04,623
CONDITION.  PRETTY SOON HERE.  

2379
01:36:04,623 --> 01:36:06,225
SO WHAT WE ARE DOING IS WORKING 

2380
01:36:06,225 --> 01:36:08,627
ON THE NATURAL HISTORY STUDY OF 

2381
01:36:08,627 --> 01:36:10,729
THIS VERY ULTRA RARE DISEASE 

2382
01:36:10,729 --> 01:36:14,133
THAT HAS HARDLY ANY PATIENTS.  

2383
01:36:14,133 --> 01:36:16,635
SO IT'S A VERY DIFFERENT 

2384
01:36:16,635 --> 01:36:18,904
APPROACH BECAUSE THERE'S SO MANY

2385
01:36:18,904 --> 01:36:20,405
UNKNOWNS.  AND SO WE DON'T 

2386
01:36:20,405 --> 01:36:22,241
REALLY HAVE A CLEAR PATH AS, YOU

2387
01:36:22,241 --> 01:36:24,977
KNOW, WHAT RESEARCH SHOULD LOOK 

2388
01:36:24,977 --> 01:36:32,618
LIKE IN AN IN A ONE OR A FEW 

2389
01:36:32,618 --> 01:36:34,419
WHEN THERE'S NO HISTORY BUT 

2390
01:36:34,419 --> 01:36:36,622
GIVEN THE DISEASE IS PROGRESSIVE

2391
01:36:36,622 --> 01:36:38,090
AND DEBILITATING IT'S URGENT.  

2392
01:36:38,090 --> 01:36:41,960
SO THE FACT THAT WE GOT TO MOVE 

2393
01:36:41,960 --> 01:36:42,961
QUICKLY AND AT THE SAME TIME 

2394
01:36:42,961 --> 01:36:44,930
UNDERSTAND THIS DISEASE WHILE 

2395
01:36:44,930 --> 01:36:47,699
ALSO GETTING PATIENTS INTO THE 

2396
01:36:47,699 --> 01:36:49,768
CLINIC AND MANY OF THEM ARE 

2397
01:36:49,768 --> 01:36:52,204
CHILDREN.  I THINK IT REALLY 

2398
01:36:52,204 --> 01:36:56,675
SETS UP FOR NOT JUST A 

2399
01:36:56,675 --> 01:36:57,976
CHALLENGING RESEARCH STUDY BUT 

2400
01:36:57,976 --> 01:37:00,979
ALSO ONE THAT REQUIRES A LOT OF 

2401
01:37:00,979 --> 01:37:02,314
COLLABORATION BETWEEN PATIENT 

2402
01:37:02,314 --> 01:37:05,651
AND RESEARCHER ON A JOURNEY OF 

2403
01:37:05,651 --> 01:37:07,519
DISCOVERY AS WELL AS FINDING 

2404
01:37:07,519 --> 01:37:10,789
TREATMENTS FOR A POPULATION THAT

2405
01:37:10,789 --> 01:37:12,424
IS SO SMALL THAT COULD BE 

2406
01:37:12,424 --> 01:37:14,526
CONSIDERED TOTALLY 

2407
01:37:14,526 --> 01:37:15,894
INSIGNIFICANT.  YET, SO 

2408
01:37:15,894 --> 01:37:17,963
IMPORTANT, BECAUSE IT WILL LEAD 

2409
01:37:17,963 --> 01:37:19,598
US TO IMPORTANT DISCOVERIES THAT

2410
01:37:19,598 --> 01:37:21,300
WILL HELP GENERAL DISEASES.  SO 

2411
01:37:21,300 --> 01:37:23,735
I AM HAPPY TO BE PARTICIPATING 

2412
01:37:23,735 --> 01:37:24,636
IN THIS DISCUSSION TODAY BECAUSE

2413
01:37:24,636 --> 01:37:28,307
EVEN IN THIS TWO YEARS, I'VE 

2414
01:37:28,307 --> 01:37:29,408
LEARNED SO MUCH AND IN THIS 

2415
01:37:29,408 --> 01:37:30,909
PROCESS AND I'M REALLY EXCITED 

2416
01:37:30,909 --> 01:37:34,012
FOR THE WORK THAT IS GOING TO 

2417
01:37:34,012 --> 01:37:35,113
COME, NOT JUST FROM THIS JOURNEY

2418
01:37:35,113 --> 01:37:38,183
BUT ALSO FROM THE DISCUSSION 

2419
01:37:38,183 --> 01:37:38,984
HERE TODAY.

2420
01:37:38,984 --> 01:37:40,886
>> THANK YOU, ALL, SO MUCH
AND 

2421
01:37:40,886 --> 01:37:43,355
MAYBE I WILL COME BACK TO YOU, 

2422
01:37:43,355 --> 01:37:45,390
NINA TO ASK, SOUND LIKE YOU'RE 

2423
01:37:45,390 --> 01:37:55,033
ON THE EDGE OF ENROLLING IN AN 

2424
01:37:55,033 --> 01:37:57,803
ALREADY UNIQUE TRIAL AND I'M 

2425
01:37:57,803 --> 01:37:59,004
WONDERING IF YOU CAN SHARE SOME 

2426
01:37:59,004 --> 01:38:00,606
OF THE THINGS THAT YOU'VE BEEN 

2427
01:38:00,606 --> 01:38:01,573
THINKING ABOUT OR HAVE THOUGHT 

2428
01:38:01,573 --> 01:38:02,374
ABOUT IN ANTICIPATION OF 

2429
01:38:02,374 --> 01:38:04,543
ENROLLING IN A TRIAL THAT IS 

2430
01:38:04,543 --> 01:38:05,844
BASICALLY THE FIRST, SOUNDS LIKE

2431
01:38:05,844 --> 01:38:07,813
IT'S GOING TO BE THE FIRST IN 

2432
01:38:07,813 --> 01:38:12,150
HUMAN TRIAL OF THIS 

2433
01:38:12,150 --> 01:38:12,484
INTERVENTION.

2434
01:38:12,484 --> 01:38:16,021
>> YES, SO THERE ARE A
COUPLE OF

2435
01:38:16,021 --> 01:38:17,923
THINGS.  ONE IS THAT, YOU KNOW, 

2436
01:38:17,923 --> 01:38:21,293
WHEN YOU ARE SO RARE, AND WHEN 

2437
01:38:21,293 --> 01:38:23,395
YOU LIVED WITH A DISEASE FOR SO 

2438
01:38:23,395 --> 01:38:25,998
LONG AND HAD NO IDEA WHAT IT WAS

2439
01:38:25,998 --> 01:38:28,400
AND NOW SUDDENLY YOU KNOW, FAST 

2440
01:38:28,400 --> 01:38:30,469
FORWARD AND YOU ARE ON THE VERGE

2441
01:38:30,469 --> 01:38:32,804
OF A TREATMENT.  I MEAN, THE 

2442
01:38:32,804 --> 01:38:34,172
SIGNIFICANCE OF THAT IS 

2443
01:38:34,172 --> 01:38:36,375
SOMETIMES SO OVERWHELMING THAT 

2444
01:38:36,375 --> 01:38:39,845
YOU DON'T REALLY HAVE A MINUTE 

2445
01:38:39,845 --> 01:38:41,847
TO REALLY WORNED WHAT YOU'VE 

2446
01:38:41,847 --> 01:38:45,717
DONE, RIGHT?  SO WHEN WE GOT A 

2447
01:38:45,717 --> 01:38:46,718
DIAGNOSIS, THE FIRST IDEA WAS 

2448
01:38:46,718 --> 01:38:50,722
LIKE, HOW DO WE GET A TREATMENT?

2449
01:38:50,722 --> 01:38:52,891
AND WHEN I READ UP ABOUT THE 

2450
01:38:52,891 --> 01:38:53,859
CONDITION, IN FACT THERE WAS 

2451
01:38:53,859 --> 01:38:56,561
NOTHING WRITTEN, IT WAS JUST ONE

2452
01:38:56,561 --> 01:39:00,599
LINE IN ONE RESEARCH PAPER THAT 

2453
01:39:00,599 --> 01:39:01,400
SAID WE COULD POSSIBLY TURN OFF 

2454
01:39:01,400 --> 01:39:03,769
THE, YOU KNOW, I HAVE AN 

2455
01:39:03,769 --> 01:39:05,804
OVERACTIVE PTH RECEPTOR SO WE 

2456
01:39:05,804 --> 01:39:08,607
COULD POSSIBLY TURN THAT OFF BY 

2457
01:39:08,607 --> 01:39:10,375
CREATING AN INVERSE AGONIST AND 

2458
01:39:10,375 --> 01:39:13,578
IT WAS ONE LINE IN ONE RESEARCH 

2459
01:39:13,578 --> 01:39:15,480
PAPER AND WE PACKED OUR BAG TO 

2460
01:39:15,480 --> 01:39:17,082
FIND THE RESEARCHER THAT HAD 

2461
01:39:17,082 --> 01:39:18,116
WRITTEN THAT PAPER AND THEN 

2462
01:39:18,116 --> 01:39:20,619
TOGETHER WITH HIM AND WE STARTED

2463
01:39:20,619 --> 01:39:23,121
THE FOUNDATION FOR THIS DISEASE 

2464
01:39:23,121 --> 01:39:24,556
CALLED THE GENERAL SIN'S 

2465
01:39:24,556 --> 01:39:27,626
FOUNDATION AND THEN IT WAS A LOT

2466
01:39:27,626 --> 01:39:29,061
TO FIND OUT IF WE COULD GET 

2467
01:39:29,061 --> 01:39:30,896
FIRST THE FUNDING TO BE ABLE TO 

2468
01:39:30,896 --> 01:39:32,597
MOVE THIS INTO TREATMENT BECAUSE

2469
01:39:32,597 --> 01:39:42,808
IN RARE DISEASES, YOU KNOW SH, 

2470
01:39:42,808 --> 01:39:47,713
THERE'S JUST NOT ENOUGH 

2471
01:39:47,713 --> 01:39:48,947
RESOURCES, NOT ENOUGH FUNDING.  

2472
01:39:48,947 --> 01:39:50,382
AT FIRST THERE WERE ONLY THREE 

2473
01:39:50,382 --> 01:39:52,617
PATIENTS ME AND MY TWO BOYS.  

2474
01:39:52,617 --> 01:39:55,487
AND IT'S OUR LIVES DON'T MATTER.

2475
01:39:55,487 --> 01:39:57,656
THAT'S BASICALLY WHAT THEY'RE 

2476
01:39:57,656 --> 01:39:59,024
SAYING.  YOU HAVE ALL THIS 

2477
01:39:59,024 --> 01:40:00,292
SCIENCE AND WE DON'T MATTER.  IT

2478
01:40:00,292 --> 01:40:02,260
WAS A JOURNEY TO CHANGE THAT 

2479
01:40:02,260 --> 01:40:04,596
NARRATIVE.  AND ONCE WE GOT A 

2480
01:40:04,596 --> 01:40:06,264
RESEARCHER ON BOARD AND 

2481
01:40:06,264 --> 01:40:08,900
DR. SMITH FROM THE NIH I THINK 

2482
01:40:08,900 --> 01:40:10,135
THAT WE DIDN'T, IT WAS VERY 

2483
01:40:10,135 --> 01:40:12,571
UNIQUE BECAUSE I DIDN'T HAVE 

2484
01:40:12,571 --> 01:40:15,374
TIME TO THINK ABOUT, OKAY, AM I 

2485
01:40:15,374 --> 01:40:17,109
GOING TO GET INTO THIS RESEARCH 

2486
01:40:17,109 --> 01:40:18,610
INTO AND IS SOMETHING NEGATIVE 

2487
01:40:18,610 --> 01:40:22,114
GOING TO HAPPEN?  I HAD TO JUMP 

2488
01:40:22,114 --> 01:40:23,849
IN WITH HOPE.  HOPE AND TRUST 

2489
01:40:23,849 --> 01:40:25,417
AND THESE ARE IMPORTANT FOR ANY 

2490
01:40:25,417 --> 01:40:26,618
RESEARCH.  I CAN'T SEE THE ROOM 

2491
01:40:26,618 --> 01:40:28,620
BUT TO THOSE IN THE ROOM, TRUST 

2492
01:40:28,620 --> 01:40:30,489
IS INCREDIBLY IMPORTANT.  WE 

2493
01:40:30,489 --> 01:40:34,960
DON'T GET INTO RESEARCH BECAUSE,

2494
01:40:34,960 --> 01:40:37,162
YOU KNOW, WE THINK THAT, YOU 

2495
01:40:37,162 --> 01:40:39,197
KNOW, THERE IS SOME, YOU KNOW, 

2496
01:40:39,197 --> 01:40:41,767
YES, IN MANY WAYS WE ARE 

2497
01:40:41,767 --> 01:40:43,168
THINKING, WOW, WE'RE GOING TO 

2498
01:40:43,168 --> 01:40:44,603
CHANGE SCIENCE AND WE'RE HERE 

2499
01:40:44,603 --> 01:40:45,771
GIVING OURSELVES FOR RESEARCH 

2500
01:40:45,771 --> 01:40:46,738
BUT YOU'VE GOT TO ALSO 

2501
01:40:46,738 --> 01:40:48,340
UNDERSTAND THAT WE'RE GIVING 

2502
01:40:48,340 --> 01:40:49,574
OURSELF TO THE TRUST THAT WE 

2503
01:40:49,574 --> 01:40:52,611
HAVE IN YOU.  AS A PARTNER.  AS 

2504
01:40:52,611 --> 01:40:54,546
AN EQUAL IN THIS PROCESS, 

2505
01:40:54,546 --> 01:40:56,681
ESPECIALLY IN ULTRA RARE 

2506
01:40:56,681 --> 01:41:00,619
DISEASES.  OR IN RARE DISEASES. 

2507
01:41:00,619 --> 01:41:03,555
THAT IS WHAT PROPELS US SO THE 

2508
01:41:03,555 --> 01:41:05,490
WHOLE PROCESS HAS BEEN I HAVE TO

2509
01:41:05,490 --> 01:41:07,259
SAY PRETTY INCREDIBLY POSITIVE. 

2510
01:41:07,259 --> 01:41:09,194
YOU KNOW, WE'VE GONE THROUGH THE

2511
01:41:09,194 --> 01:41:13,098
INFORMED CONSENT PROCESS.  AYE 

2512
01:41:13,098 --> 01:41:18,036
HAD MY CHILDREN HAVE TO CONSENT 

2513
01:41:18,036 --> 01:41:19,971
AS WELL THAT PROCESS HAS BEEN 

2514
01:41:19,971 --> 01:41:20,639
PRETTY SEAMLESS WE HAVE 

2515
01:41:20,639 --> 01:41:21,473
UNDERSTOOD RIGHT FROM THE 

2516
01:41:21,473 --> 01:41:23,108
BEGINNING WHAT THAT PROCESS HAS 

2517
01:41:23,108 --> 01:41:28,613
BEEN LIKE.  BUT, YOU KNOW, IT'S 

2518
01:41:28,613 --> 01:41:30,782
ALSO UNDERSTANDING THAT RISK 

2519
01:41:30,782 --> 01:41:33,652
BENEFIT RATIO.  RIGHT?  WHAT AM 

2520
01:41:33,652 --> 01:41:35,587
I GOING TO DO?  WHAT AM I GOING 

2521
01:41:35,587 --> 01:41:37,189
TO COMMIT TO IN ORDER TO MAKE 

2522
01:41:37,189 --> 01:41:38,657
SURE THAT MY CHILDREN AND OTHERS

2523
01:41:38,657 --> 01:41:41,326
WITHIN MY COMMUNITY WILL HAVE A 

2524
01:41:41,326 --> 01:41:42,594
TREATMENT?  WHAT SAFEGUARDS ARE 

2525
01:41:42,594 --> 01:41:44,763
IN PLACE TO PROTECT MY CHILDREN 

2526
01:41:44,763 --> 01:41:46,965
FROM ANY PHYSICAL EMOTIONAL OR 

2527
01:41:46,965 --> 01:41:48,600
PSYCHOLOGICAL HARM?  THAT IS 

2528
01:41:48,600 --> 01:41:52,604
GOING TO HAPPEN DURING THE 

2529
01:41:52,604 --> 01:41:54,906
STUDY?  SO I THINK THAT'S 

2530
01:41:54,906 --> 01:41:56,675
DEFINITELY GOING THROUGH MY MIND

2531
01:41:56,675 --> 01:41:59,845
BUT PREDOMINANTLY IT WAS MY 

2532
01:41:59,845 --> 01:42:01,980
TRUST IN DR. SMITH, IN THE 

2533
01:42:01,980 --> 01:42:03,915
CLINICAL CENTER, EVERY PERSON I 

2534
01:42:03,915 --> 01:42:05,484
CAME ACROSS AT THE CENTER WAS 

2535
01:42:05,484 --> 01:42:07,686
POSITIVE, WAS ENCOURAGING, WAS 

2536
01:42:07,686 --> 01:42:11,123
HELPFUL.  YOU KNOW, THEY WERE 

2537
01:42:11,123 --> 01:42:16,595
ALL FASCINATED BY OUR STORY.  

2538
01:42:16,595 --> 01:42:18,763
WHICH THAT'S ANOTHER THING.  

2539
01:42:18,763 --> 01:42:19,798
IT'S IMPORTANT FOR US TO 

2540
01:42:19,798 --> 01:42:20,866
REMEMBER THAT THESE ARE HUMAN 

2541
01:42:20,866 --> 01:42:22,234
BEINGS AND THEY COME WITH 

2542
01:42:22,234 --> 01:42:22,901
STORIES AND BACKGROUNDS AND ALL 

2543
01:42:22,901 --> 01:42:26,404
THESE HOPES AND, YOU KNOW, AND 

2544
01:42:26,404 --> 01:42:29,241
FEARS AND SO REALLY BEGIN TO 

2545
01:42:29,241 --> 01:42:30,909
DISMANTLE THAT THROUGH THE WHOLE

2546
01:42:30,909 --> 01:42:32,477
RESEARCH PROCESS AND BE THERE IN

2547
01:42:32,477 --> 01:42:36,081
A SUPPORTIVE MANNER, I THINK IS 

2548
01:42:36,081 --> 01:42:37,048
REALLY PARAMOUNT.

2549
01:42:37,048 --> 01:42:39,351
>> GREAT, THANK YOU VERY
MUCH.  

2550
01:42:39,351 --> 01:42:42,387
SO I'D LIKE TO GO TO YOU NEXT, 

2551
01:42:42,387 --> 01:42:43,922
LIAM, IF YOU CAN TELL US A 

2552
01:42:43,922 --> 01:42:44,756
LITTLE BIT ABOUT, IT SOUND LIKE 

2553
01:42:44,756 --> 01:42:47,459
A COUPLE OF YEARS AGO YOU HAD 

2554
01:42:47,459 --> 01:42:51,129
THE OPPORTUNITY TO ENROLL IN THE

2555
01:42:51,129 --> 01:42:52,264
STUDY.  IF YOU CAN TELL US A BIT

2556
01:42:52,264 --> 01:42:53,899
ABOUT WHAT WAS THAT LIKE, WHAT 

2557
01:42:53,899 --> 01:42:54,766
WAS THINKING ABOUT THE 

2558
01:42:54,766 --> 01:42:55,867
OPPORTUNITY TO ENROLL IN A 

2559
01:42:55,867 --> 01:42:58,570
CLINICAL STUDY LIKE?  WHAT WERE 

2560
01:42:58,570 --> 01:42:59,337
YOU THINKING ABOUT?

2561
01:42:59,337 --> 01:43:01,239
>> YEAH SO THE STUDY
ACTUALLY 

2562
01:43:01,239 --> 01:43:02,841
WAS RIGHT BEFORE, I ACTUALLY 

2563
01:43:02,841 --> 01:43:07,779
WENT TO NIH IN 2022 AND I WAS 

2564
01:43:07,779 --> 01:43:09,915
GOING -- THIS WAS RIGHT BEFORE 

2565
01:43:09,915 --> 01:43:11,283
COLLEGE LIKE ENTERING COLLEGE 

2566
01:43:11,283 --> 01:43:12,951
AND BASICALLY THE GOAL OF THE 

2567
01:43:12,951 --> 01:43:15,487
GOING TO THE NIH WAS FOR THEIR 

2568
01:43:15,487 --> 01:43:17,455
LIFELONG STUDY OF CAH WHICH IS 

2569
01:43:17,455 --> 01:43:22,727
JUST TO MONITOR PATIENTS,  MALE 

2570
01:43:22,727 --> 01:43:23,728
PATIENTS THROUGHOUT THEIR WHOLE 

2571
01:43:23,728 --> 01:43:24,629
LIFE AND THAT WAS THE FIRST TIME

2572
01:43:24,629 --> 01:43:25,997
I STARTED LOOKING AT THE 

2573
01:43:25,997 --> 01:43:26,831
CLINICAL TRIAL. 

2574
01:43:26,831 --> 01:43:29,467
SEEING IF I WANTED TO JOIN, ET 

2575
01:43:29,467 --> 01:43:30,936
CETERA.  AND WE WERE GOING TO GO

2576
01:43:30,936 --> 01:43:34,539
THROUGH NIH WITH THE CLINICAL 

2577
01:43:34,539 --> 01:43:40,612
TRIAL AND AL THAT POINT I 

2578
01:43:40,612 --> 01:43:44,382
COULDN'T GET INTO NIH BECAUSE 

2579
01:43:44,382 --> 01:43:47,953
ALL THE SPOTS FILLED UP. 

2580
01:43:47,953 --> 01:43:52,424
FORTUNATELY MY SCHOOL HAD THE 

2581
01:43:52,424 --> 01:43:53,858
CLINICAL TRIAL AND I COULD JOIN.

2582
01:43:53,858 --> 01:43:55,660
AND I LOOKED AT THE BIG 

2583
01:43:55,660 --> 01:43:57,796
QUESTION, IS IT SAFE AND, YOU 

2584
01:43:57,796 --> 01:44:00,599
KNOW, WHAT ARE THE RISKS OF THE 

2585
01:44:00,599 --> 01:44:01,866
CLINICAL TRIAL?  RIGHT?  THAT 

2586
01:44:01,866 --> 01:44:02,434
WAS PROBABLY BEFORE I WAS 

2587
01:44:02,434 --> 01:44:04,236
CONSIDERING ENROLLING WHAT WAS 

2588
01:44:04,236 --> 01:44:06,304
MY BIGGEST TWO CONCERNS BECAUSE 

2589
01:44:06,304 --> 01:44:09,908
AT THAT TIME I WAS 18.  AND I 

2590
01:44:09,908 --> 01:44:11,876
WOULD STILL CONSIDER MYSELF A 

2591
01:44:11,876 --> 01:44:14,012
YOUNG ADULT KID BUT, AND THEN 

2592
01:44:14,012 --> 01:44:15,280
WHAT KIND OF MADE ME I GUESS 

2593
01:44:15,280 --> 01:44:18,683
PUSH MYSELF OVER THE EDGE TO 

2594
01:44:18,683 --> 01:44:21,419
JOIN WAS BASICALLY I KNOW THIS 

2595
01:44:21,419 --> 01:44:23,488
SOUNDS KIND OF MESSED UP THE 

2596
01:44:23,488 --> 01:44:24,556
FACT THAT THERE WERE OTHER KIDS 

2597
01:44:24,556 --> 01:44:26,791
IN THE TRIAL MADE ME REALIZE OR 

2598
01:44:26,791 --> 01:44:28,126
AT LEAST FEEL SAFE THAT, YOU 

2599
01:44:28,126 --> 01:44:29,594
KNOW, IF THEY'RE TESTING ON KIDS

2600
01:44:29,594 --> 01:44:33,832
AT THIS POINT THEN THE DRUG IS 

2601
01:44:33,832 --> 01:44:36,301
PROBABLY PRETTY SAFE OR I HOPE 

2602
01:44:36,301 --> 01:44:37,869
IT IS AND IT WAS ALSO A PHASE 

2603
01:44:37,869 --> 01:44:40,605
THREE TRIAL AT THAT POINT SO IT 

2604
01:44:40,605 --> 01:44:41,840
HAD BEEN GOING ON FOR TWO TO 

2605
01:44:41,840 --> 01:44:42,974
THREE YEARS NOW AND I WAS 

2606
01:44:42,974 --> 01:44:44,342
ACTUALLY I THINK THE LAST PERSON

2607
01:44:44,342 --> 01:44:47,379
TO JOIN OF THE TRIAL LIKE I 

2608
01:44:47,379 --> 01:44:50,448
JOINED NOVEMBER 2022 AND THEN IT

2609
01:44:50,448 --> 01:44:52,350
SHUT DOWN DECEMBER 1ST SO I WAS 

2610
01:44:52,350 --> 01:44:56,721
ONE OF THE LAST PEOPLE.  AND, 

2611
01:44:56,721 --> 01:44:59,624
YOU KNOW, BASICALLY I STILL HAD 

2612
01:44:59,624 --> 01:45:02,027
TIME TO BACK OUT, LIKE, UNTIL 

2613
01:45:02,027 --> 01:45:03,094
JANUARY SO WHEN WE WERE JUST 

2614
01:45:03,094 --> 01:45:04,296
KIND OF GETTING INTO THE MAKING 

2615
01:45:04,296 --> 01:45:08,600
SURE MY LEVELS WERE, YOU KNOW, 

2616
01:45:08,600 --> 01:45:09,634
QUALIFIED, ET CETERA I WAS STILL

2617
01:45:09,634 --> 01:45:13,338
THINKING ABOUT HOW SAFE IS IT?  

2618
01:45:13,338 --> 01:45:14,472
I GUESS THAT'S ALWAYS A BIG 

2619
01:45:14,472 --> 01:45:17,676
CONCERN OF MINE.  IF I TAKE THIS

2620
01:45:17,676 --> 01:45:19,411
DRUG I WOULD BE ONE OF THE FIRST

2621
01:45:19,411 --> 01:45:20,612
PEOPLE TO TAKE THIS DRUG 

2622
01:45:20,612 --> 01:45:22,113
THROUGHOUT MY LIFE SO WE DON'T 

2623
01:45:22,113 --> 01:45:23,415
KNOW WHAT THE LONG-TERM 

2624
01:45:23,415 --> 01:45:25,350
SITUATIONS ARE.  SO I HAD 

2625
01:45:25,350 --> 01:45:27,085
ANXIETY ABOUT THAT.  BUT, YOU 

2626
01:45:27,085 --> 01:45:29,354
KNOW, ONCE I ACTUALLY GOT ON THE

2627
01:45:29,354 --> 01:45:33,191
DRUG, I SAW THE BENEFITS OF IT, 

2628
01:45:33,191 --> 01:45:36,094
LIKE, MY STEROID USAGE WENT DOWN

2629
01:45:36,094 --> 01:45:38,263
STRAIGHTAWAY.  NOT STRAIGHTAWAY 

2630
01:45:38,263 --> 01:45:39,798
BUT PRETTY SOON AND, YOU KNOW, 

2631
01:45:39,798 --> 01:45:41,466
LIKE I JUST SAW A LOT OF THE 

2632
01:45:41,466 --> 01:45:43,768
SIDE EFFECTS OF CAH ALSO GET 

2633
01:45:43,768 --> 01:45:46,805
MINIMIZED BECAUSE I WASN'T ON AS

2634
01:45:46,805 --> 01:45:48,406
MUCH STEROIDS.  SO THE ANXIETY 

2635
01:45:48,406 --> 01:45:49,808
OF THE LONG-TERM IS NOT AS BIG 

2636
01:45:49,808 --> 01:45:51,743
OF A DEAL TO ME BECAUSE, WELL, I

2637
01:45:51,743 --> 01:45:55,347
GUESS THE SHORT-TERM I'M SEEING 

2638
01:45:55,347 --> 01:45:57,949
BENEFITS.  AND I GUESS FOR ME 

2639
01:45:57,949 --> 01:46:00,051
THAT WEIGHS, I GUESS THAT 

2640
01:46:00,051 --> 01:46:04,422
OUTWEIGHS THE LONG-TERM STEROID 

2641
01:46:04,422 --> 01:46:05,890
USAGE BASICALLY, I'M TRYING TO 

2642
01:46:05,890 --> 01:46:10,729
THINK OF THE WAY TO SAY IT.  THE

2643
01:46:10,729 --> 01:46:12,597
LONG-TERM STEROID USAGE 

2644
01:46:12,597 --> 01:46:15,100
BASICALLY GOT, HOW CAN I SAY IT?

2645
01:46:15,100 --> 01:46:17,802
>> IT'S A TRADE-OFF,
RIGHT?  

2646
01:46:17,802 --> 01:46:20,472
BETWEEN IMAGINING BEING ON THOSE

2647
01:46:20,472 --> 01:46:22,941
STEROIDS FOR A LIFETIME VERSUS 

2648
01:46:22,941 --> 01:46:23,708
GIVING THIS DRUG A TRY.

2649
01:46:23,708 --> 01:46:28,613
>> YES, YES, EXACTLY. 
THANK 

2650
01:46:28,613 --> 01:46:28,780
YOU.

2651
01:46:28,780 --> 01:46:31,015
>> YEAH, SURE.  SO WHY
DON'T YOU

2652
01:46:31,015 --> 01:46:32,183
TELL US A LITTLE BIT ABOUT HOW 

2653
01:46:32,183 --> 01:46:35,153
YOU FIRST ENROLLED IN THE TRIAL?

2654
01:46:35,153 --> 01:46:37,822
>> SURE.  FOR ME, I WAS
PROBABLY

2655
01:46:37,822 --> 01:46:40,658
AN UNDERGRAD AND I HAD A LOW 

2656
01:46:40,658 --> 01:46:42,694
VISION SPECIALIST OUTSIDE WHO 

2657
01:46:42,694 --> 01:46:44,696
DID -- HE WOULD COME TO THE NIH 

2658
01:46:44,696 --> 01:46:47,365
AT THE NEI, THE NATIONAL EYE 

2659
01:46:47,365 --> 01:46:49,868
INSTITUTE, ONCE A MONTH AND HE 

2660
01:46:49,868 --> 01:46:51,002
THOUGHT I WAS REALLY STRUGGLING 

2661
01:46:51,002 --> 01:46:56,141
GOING TO SKOCHOOL, READING BOOK 

2662
01:46:56,141 --> 01:46:57,375
AND STUFF AND HE SAID MY HANDS 

2663
01:46:57,375 --> 01:47:00,245
ARE TIED WHY DON'T WE TRY TAKING

2664
01:47:00,245 --> 01:47:03,114
YOU TO THE NIH AND FOR ME IT WAS

2665
01:47:03,114 --> 01:47:06,317
LIKE, YEAH, LET'S GO.  

2666
01:47:06,317 --> 01:47:09,654
I WAS WILL BE AND EXCITED TO 

2667
01:47:09,654 --> 01:47:10,922
COME, DEFINITELY.  THAT FIRST 

2668
01:47:10,922 --> 01:47:13,625
INITIAL DAY WHEN I CAME AND I 

2669
01:47:13,625 --> 01:47:16,528
GOT TO MEET DR. Z, GOSH IT FEELS

2670
01:47:16,528 --> 01:47:18,730
LIKE YESTERDAY BUT IT WAS JUST 

2671
01:47:18,730 --> 01:47:20,698
MY HOPE LIGHT JUST WAS GETTING 

2672
01:47:20,698 --> 01:47:22,267
BRIGHTER AND BRIGHTER AND 

2673
01:47:22,267 --> 01:47:24,235
BRIGHTER.  AGAIN, KIND OF 

2674
01:47:24,235 --> 01:47:28,606
HEARING WHAT NINA WAS SAYING IT 

2675
01:47:28,606 --> 01:47:31,643
IS A RARE DISEASE THAT I HAVE. 

2676
01:47:31,643 --> 01:47:33,978
IT WASN'T A RARE DISEASE AND 

2677
01:47:33,978 --> 01:47:36,114
THERE'S A CLINICAL TRIAL I HOPE 

2678
01:47:36,114 --> 01:47:38,716
ONE DAY I CAN BE THAT FIRST IN 

2679
01:47:38,716 --> 01:47:40,585
HUMAN PROCESS.  I AM IN THE 

2680
01:47:40,585 --> 01:47:42,187
BACKS.  I WANT PEOPLE TO BE 

2681
01:47:42,187 --> 01:47:43,655
AWARE OF THIS BECAUSE THERE IS 

2682
01:47:43,655 --> 01:47:45,056
SOMEWHERE OUT THERE THAT 

2683
01:47:45,056 --> 01:47:47,125
PROBABLY HAS THE SAME DISEASE AS

2684
01:47:47,125 --> 01:47:49,227
ME.  SO THAT IS WHAT MOTIVATED 

2685
01:47:49,227 --> 01:47:50,762
ME TO GO SAYING HEY, THERE IS 

2686
01:47:50,762 --> 01:47:53,097
NOT A LOT OF PEOPLE ON THE BOOKS

2687
01:47:53,097 --> 01:47:56,201
HAVING THE ISSUES I AM HAVING.  

2688
01:47:56,201 --> 01:47:59,037
MAYBE I CAN BE THE FIRST ONE AND

2689
01:47:59,037 --> 01:48:00,438
HELP PEOPLE MOVE THIS DISEASE 

2690
01:48:00,438 --> 01:48:02,173
FORWARD IN HELPING PEOPLE DOWN 

2691
01:48:02,173 --> 01:48:03,308
THE ROAD.

2692
01:48:03,308 --> 01:48:05,743
>> ELLEN IT SOUNDS LIKE
YOUR DAD

2693
01:48:05,743 --> 01:48:07,445
CALLED AND SAID, OH MY GOSH YOU 

2694
01:48:07,445 --> 01:48:09,080
SHOULD GET IN THIS TRIAL, TELL 

2695
01:48:09,080 --> 01:48:10,114
US A LITTLE BIT MORE ABOUT THAT 

2696
01:48:10,114 --> 01:48:10,448
STORY.

2697
01:48:10,448 --> 01:48:12,484
>> YEAH, HE FIRST KNEW OF
THIS. 

2698
01:48:12,484 --> 01:48:14,586
AND SO THEN I STARTED TO DO 

2699
01:48:14,586 --> 01:48:18,156
RESEARCH.  YOU KNOW, AND I WENT 

2700
01:48:18,156 --> 01:48:22,861
TO CLINICAL TRIALS AND FOUND 

2701
01:48:22,861 --> 01:48:23,661
CLINICALTRIALS.GOV AND FOUND THE

2702
01:48:23,661 --> 01:48:24,429
ACTUAL CLINICAL TRIAL AND READ 

2703
01:48:24,429 --> 01:48:26,397
ALL THE DETAILS AND MY DISEASE 

2704
01:48:26,397 --> 01:48:31,002
IS NOT RARE, UNFORTUNATELY.  BUT

2705
01:48:31,002 --> 01:48:33,671
MY PARTICULAR DIFFICULTY WITH IT

2706
01:48:33,671 --> 01:48:35,807
WAS RARE AND IT WAS AFFECTING ME

2707
01:48:35,807 --> 01:48:38,343
SO I WAS VERY CONCERNED ABOUT 

2708
01:48:38,343 --> 01:48:39,644
THAT.  BECAUSE I NEVER KNEW IF I

2709
01:48:39,644 --> 01:48:41,613
WAS GOING TO KILL SOMEONE ELSE 

2710
01:48:41,613 --> 01:48:43,348
OR MYSELF.  WHEN I WOULD PASS 

2711
01:48:43,348 --> 01:48:45,216
OUT.  AND I WOULD HAVE TO CHANGE

2712
01:48:45,216 --> 01:48:47,418
MY WHOLE LIFE AND NOT WORK 

2713
01:48:47,418 --> 01:48:49,354
ANYMORE AND, YOU KNOW, SO I WAS 

2714
01:48:49,354 --> 01:48:50,889
VERY CONCERNED ABOUT THAT.  AND 

2715
01:48:50,889 --> 01:48:55,727
THEN I FIGURED OUT ALL, READ 

2716
01:48:55,727 --> 01:48:58,363
EVERYTHING ABOUT IT.  AND YOU 

2717
01:48:58,363 --> 01:49:00,698
KNOW IT WAS LIKE, WELL WHY NOT? 

2718
01:49:00,698 --> 01:49:02,734
NOTHING ELSE HAS WORKED.  I'VE 

2719
01:49:02,734 --> 01:49:05,803
TRIED MANY THINGS.  GONE TO MANY

2720
01:49:05,803 --> 01:49:07,505
DOCTORS.  AND THEY JUST DIDN'T 

2721
01:49:07,505 --> 01:49:08,940
KNOW.  THEY DIDN'T KNOW HOW TO 

2722
01:49:08,940 --> 01:49:11,209
WAKE MY BODY UP SO I KNEW WHEN I

2723
01:49:11,209 --> 01:49:13,511
WAS GOING TO GO LOW.  AND THEY 

2724
01:49:13,511 --> 01:49:15,713
THOUGHT THAT, YOU KNOW, SO I 

2725
01:49:15,713 --> 01:49:17,815
TALK IT OVER WITH MY REGULAR 

2726
01:49:17,815 --> 01:49:19,417
PRACTITIONER AND SHE SAID, WELL,

2727
01:49:19,417 --> 01:49:21,519
I THINK YOU SHOULD GIVE IT A 

2728
01:49:21,519 --> 01:49:23,721
TRY.  WHY NOT?  AND IT WAS A 

2729
01:49:23,721 --> 01:49:25,557
QUESTION OF WHY NOT.  BUT THEN 

2730
01:49:25,557 --> 01:49:27,392
IT WAS, LIKE, WELL, OF COURSE.  

2731
01:49:27,392 --> 01:49:30,828
YOU KNOW, LIKE HERE I AM.  LIKE 

2732
01:49:30,828 --> 01:49:33,932
YOU SAID TOO, HERE I AM, LET'S 

2733
01:49:33,932 --> 01:49:36,568
GO.  AND I CAME FOR ALL THE 

2734
01:49:36,568 --> 01:49:38,069
INTERVIEWS.  AND ONE OF THEM, 

2735
01:49:38,069 --> 01:49:41,873
YOU KNOW, THEY CONTINUALLY SAID 

2736
01:49:41,873 --> 01:49:42,507
THROUGHOUT, YOU KNOW, AND YOU 

2737
01:49:42,507 --> 01:49:45,276
CAN DROP OUT AT ANY POINT, YOU 

2738
01:49:45,276 --> 01:49:48,546
KNOW.  BUT I REALLY FELT I WAS A

2739
01:49:48,546 --> 01:49:51,316
MEMBER OF THE TEAM THAT IT WAS A

2740
01:49:51,316 --> 01:49:52,850
GROUP DECISION AND ANYTHING THAT

2741
01:49:52,850 --> 01:49:55,620
WENT ON WE ALL GOT TO TALK ABOUT

2742
01:49:55,620 --> 01:49:58,990
IT FIRST, YOU KNOW, AND I REALLY

2743
01:49:58,990 --> 01:50:00,825
FELT THAT IT WAS, I WAS THE 

2744
01:50:00,825 --> 01:50:02,927
VALUABLE MEMBER OF THAT TEAM 

2745
01:50:02,927 --> 01:50:04,529
BECAUSE IT WAS ME THEY WERE 

2746
01:50:04,529 --> 01:50:06,331
GOING TO DO IT ON BUT THEY 

2747
01:50:06,331 --> 01:50:07,632
REALLY RESPECTED WHO I WANTED TO

2748
01:50:07,632 --> 01:50:11,936
DO AND WHAT I THOUGHT WAS GOING 

2749
01:50:11,936 --> 01:50:13,438
TO HAPPEN SO REALLY WAS EXCITED 

2750
01:50:13,438 --> 01:50:15,273
ABOUT THAT.  SO THAT'S WHEN I 

2751
01:50:15,273 --> 01:50:16,608
SAID, YEAH, OKAY, LET'S GO 

2752
01:50:16,608 --> 01:50:18,576
AHEAD.  ONCE I APPROVED.  ONCE I

2753
01:50:18,576 --> 01:50:19,644
WAS APPROVED THERE WAS NO 

2754
01:50:19,644 --> 01:50:21,779
QUESTION, I HAD GOTTEN THAT FAR 

2755
01:50:21,779 --> 01:50:22,880
AND THOUGHT NO, THERE'S NO 

2756
01:50:22,880 --> 01:50:24,549
REASON FOR ME NOT TO CONTINUE 

2757
01:50:24,549 --> 01:50:26,551
WITH THIS, YES, I AM GOING TO 

2758
01:50:26,551 --> 01:50:27,952
CONTINUE.  I'M NOT GOING TO DROP

2759
01:50:27,952 --> 01:50:29,520
OUT AT ANY PARTICULAR TIME.  BUT

2760
01:50:29,520 --> 01:50:31,723
THEY REALLY EM NO SIZED THAT 

2761
01:50:31,723 --> 01:50:35,526
THAT WAS AN OPTION.  YOU KNOW.  

2762
01:50:35,526 --> 01:50:36,427
SO I WAS VERY GRATEFUL THAT I 

2763
01:50:36,427 --> 01:50:39,497
WAS ABLE TO PARTICIPATE IN THE 

2764
01:50:39,497 --> 01:50:39,697
TRIAL.

2765
01:50:39,697 --> 01:50:41,332
>> GREAT, SO MAYBE I WILL
STAY 

2766
01:50:41,332 --> 01:50:43,868
WITH YOU.  IF YOU CAN TELL US, 

2767
01:50:43,868 --> 01:50:48,439
LIKE, IMAGINE, YOU KNOW, I OR 

2768
01:50:48,439 --> 01:50:50,775
ANYBODY IN THE AUDIENCE HAS 

2769
01:50:50,775 --> 01:50:51,743
NEVER PARTICIPATED IN A CLINICAL

2770
01:50:51,743 --> 01:50:52,777
TRIAL WHAT YOU SAY WHAT WAS THE 

2771
01:50:52,777 --> 01:50:54,078
PROCESS LIKE?  HOW OFTEN DID YOU

2772
01:50:54,078 --> 01:50:55,747
HAVE TO COME?  WAS THERE 

2773
01:50:55,747 --> 01:50:59,417
ANYTHING THAT HAPPENED THAT YOU 

2774
01:50:59,417 --> 01:51:00,652
WAS UNEXPECTED?

2775
01:51:00,652 --> 01:51:02,854
>> I THINK THAT WAS
UNEXPECTED 

2776
01:51:02,854 --> 01:51:04,589
WAS HOW MANY TIMES I HAD TO 

2777
01:51:04,589 --> 01:51:08,026
COME.  I CAME FREQUENTLY.  AND I

2778
01:51:08,026 --> 01:51:11,229
CAME TO NIH BEFORE I WAS EVEN 

2779
01:51:11,229 --> 01:51:11,829
ACCEPT BLOOD THE TRIAL THERE 

2780
01:51:11,829 --> 01:51:13,798
WERE MANY INTERVIEWS.  YOU KNOW,

2781
01:51:13,798 --> 01:51:15,233
THERE WAS A SOCIAL WORKER 

2782
01:51:15,233 --> 01:51:18,069
INTERVIEW TO FIND OUT IF I HAD A

2783
01:51:18,069 --> 01:51:19,671
SUPPORT NETWORK.  THERE WAS ALL 

2784
01:51:19,671 --> 01:51:22,607
THE CLINICIANS.  YOU KNOW, AND 

2785
01:51:22,607 --> 01:51:23,875
PEOPLE WOULD CHANGE THROUGHOUT 

2786
01:51:23,875 --> 01:51:28,079
THE PROCESS TOO.  SOME OF THE 

2787
01:51:28,079 --> 01:51:30,615
FELLOWS WOULD COME AND GO AND I 

2788
01:51:30,615 --> 01:51:31,649
WOULD GET TO KNOW THEM AND THEY 

2789
01:51:31,649 --> 01:51:33,785
WOULD FOLLOW ME THROUGH AND 

2790
01:51:33,785 --> 01:51:35,953
INITIALLY AS PART OF THE TRIAL I

2791
01:51:35,953 --> 01:51:38,056
HAD TO COME VERY FREQUENTLY TO 

2792
01:51:38,056 --> 01:51:39,691
GET BLOOD WORK DRAWN.  VERY 

2793
01:51:39,691 --> 01:51:43,061
FREQUENTLY.  AND I AM A VERY 

2794
01:51:43,061 --> 01:51:45,596
HARD STICK.  SO, YOU KNOW, 

2795
01:51:45,596 --> 01:51:48,599
THEY'D SEE ME COMING IN 

2796
01:51:48,599 --> 01:51:51,936
PHLEBOTOMY AND THEY WOULD GO 

2797
01:51:51,936 --> 01:51:55,239
(GROANS) OH, HERE SHE COMES 

2798
01:51:55,239 --> 01:51:58,009
AGAIN.  I SAVED ALL THE WRAPS 

2799
01:51:58,009 --> 01:51:58,943
AFTER YOU HAVE THE BLOOD DRAWN 

2800
01:51:58,943 --> 01:52:00,144
AND WRAPPED THEM AROUND MYSELF 

2801
01:52:00,144 --> 01:52:01,879
AND TOOK A PICTURE OF THAT AND 

2802
01:52:01,879 --> 01:52:03,981
SEND IT TO THE WRAP PEOPLE AND 

2803
01:52:03,981 --> 01:52:05,683
SAID THIS IS WHAT YOU CAN DO 

2804
01:52:05,683 --> 01:52:07,051
WITH YOUR WRAPS.  THAT'S HOW 

2805
01:52:07,051 --> 01:52:09,120
MANY TIMES I WAS COMING TO THE 

2806
01:52:09,120 --> 01:52:10,855
NIH TO GET MY BLOOD DRAWN SO I 

2807
01:52:10,855 --> 01:52:14,158
THINK THAT WAS UNEXPECTED THAT I

2808
01:52:14,158 --> 01:52:16,694
DIDN'T REALIZE HOW MANY TIMES 

2809
01:52:16,694 --> 01:52:18,663
AFTER THE ACTUAL TRANSPLANT THAT

2810
01:52:18,663 --> 01:52:19,330
I WOULD HAVE TO COME.

2811
01:52:19,330 --> 01:52:22,066
>> YEAH.  YEAH.  AND IT
SOUNDS 

2812
01:52:22,066 --> 01:52:25,570
LIKE YOU'RE IN A NATURAL HISTORY

2813
01:52:25,570 --> 01:52:28,106
STUDY.  HOW OFTEN DO YOU COME?

2814
01:52:28,106 --> 01:52:29,607
>> I COME IN ONCE A YEAR
AND 

2815
01:52:29,607 --> 01:52:32,610
IT'S A FULL DAY FROM 8 A.M. TO 5

2816
01:52:32,610 --> 01:52:34,645
P.M.   IT'S PRETTY LONG.  I'M 

2817
01:52:34,645 --> 01:52:35,947
CONSTANTLY DOING DIFFERENT TYPES

2818
01:52:35,947 --> 01:52:37,348
OF MACHINE EXAMS, TAKING 

2819
01:52:37,348 --> 01:52:38,549
PICTURES OF MY EYES AND THE 

2820
01:52:38,549 --> 01:52:40,551
FIRST DAY WHEN I CAME I JUST WAS

2821
01:52:40,551 --> 01:52:42,820
LIKE THIS ISN'T JUST A REGULAR 

2822
01:52:42,820 --> 01:52:44,388
EYE DOCTOR VISIT IT WAS 

2823
01:52:44,388 --> 01:52:45,990
BACK-TO-BACK TO BACK BUT 

2824
01:52:45,990 --> 01:52:47,492
EMPHASIZING WHAT ELLEN WAS 

2825
01:52:47,492 --> 01:52:48,693
SAYING THAT WHOLE TEAM, THEY 

2826
01:52:48,693 --> 01:52:51,095
WERE WITH YOU IN THE MORNING ALL

2827
01:52:51,095 --> 01:52:53,064
THE WAY UNTIL THE END.  IT'S 

2828
01:52:53,064 --> 01:52:54,298
REALLY, THEY DON'T LEAVE YOU 

2829
01:52:54,298 --> 01:52:55,333
ALONE, THEY'RE CONSTANTLY 

2830
01:52:55,333 --> 01:52:56,667
CHECKING IN WITH YOU, MY DAD 

2831
01:52:56,667 --> 01:52:59,170
ALWAYS COMES WITH ME.  SOME 

2832
01:52:59,170 --> 01:53:00,905
SMALL LITTLE THING OF GETTING A 

2833
01:53:00,905 --> 01:53:02,774
LITTLE BROWN BAG THAT HAD A 

2834
01:53:02,774 --> 01:53:04,809
BANANA, APPLE, CHEESE, JUST TO 

2835
01:53:04,809 --> 01:53:06,344
GET US THROUGH THE DAY THAT MADE

2836
01:53:06,344 --> 01:53:07,879
THE EXPERIENCE SO MUCH BETTER 

2837
01:53:07,879 --> 01:53:10,848
FOR US.  AGAIN, IT'S LONG DAYS. 

2838
01:53:10,848 --> 01:53:12,350
YOU'RE NOT NECESSARILY, LIKE, 

2839
01:53:12,350 --> 01:53:14,619
YEAH, LET'S, YOU GET TIRED.  BUT

2840
01:53:14,619 --> 01:53:16,921
THE TECHNICIAN, YOU BECOME -- I 

2841
01:53:16,921 --> 01:53:18,356
BECAME SO CLOSE TO MY TECHNICIAN

2842
01:53:18,356 --> 01:53:19,557
I WOULD SEE HIM EVERY YEAR, IT 

2843
01:53:19,557 --> 01:53:22,226
WAS UPDATES, WHAT'S GOING ON 

2844
01:53:22,226 --> 01:53:24,262
WITH YOUR LIFE, HERE'S THIS NEW 

2845
01:53:24,262 --> 01:53:25,463
MACHINE, DO YOU WANT TO TRY IT?

2846
01:53:25,463 --> 01:53:27,265
>> SURE.  YEAH.

2847
01:53:27,265 --> 01:53:30,802
>> SO THOSE LITTLE THINGS
MADE 

2848
01:53:30,802 --> 01:53:32,770
THAT TEAM MORE PERSONABLE AND 

2849
01:53:32,770 --> 01:53:34,505
THIS IS WHAT SHE LIKES TO DO 

2850
01:53:34,505 --> 01:53:36,474
FIRST VERSUS WE'LL DO THIS STUFF

2851
01:53:36,474 --> 01:53:37,742
LATER.  THAT MADE IT MUCH MORE 

2852
01:53:37,742 --> 01:53:39,877
EASIER TO COME AND TO HAVE THOSE

2853
01:53:39,877 --> 01:53:40,711
LONG DAYS.

2854
01:53:40,711 --> 01:53:42,313
>> I THINK THAT IS THE
GOOD 

2855
01:53:42,313 --> 01:53:43,447
POINT IS THEY KNOW YOU AS A 

2856
01:53:43,447 --> 01:53:44,615
PERSON AND RESPECT YOU AS A 

2857
01:53:44,615 --> 01:53:48,586
PERSON AND YOU'RE A PART OF THE 

2858
01:53:48,586 --> 01:53:51,656
TEA

2859
01:53:51,656 --> 01:53:51,856
TEAM.

2860
01:53:51,856 --> 01:53:54,559
>> LIAM, TELL US WHAT AN
AVERAGE

2861
01:53:54,559 --> 01:53:55,927
STUDY VISIT IS LIKE FOR YOU.

2862
01:53:55,927 --> 01:53:58,196
>> FORTUNATELY I HAVE MY 

2863
01:53:58,196 --> 01:53:59,497
CLINICAL TRIAL AT MY UNIVERSITY.

2864
01:53:59,497 --> 01:54:01,766
JUST LIKE RIGHT ACROSS THE 

2865
01:54:01,766 --> 01:54:03,801
STREET.  AND I MEAN, OVERALL, I 

2866
01:54:03,801 --> 01:54:05,903
WOULD SAY THE EXPERIENCE WAS 

2867
01:54:05,903 --> 01:54:07,471
GOOD.  THE PROBLEM ALSO FOR ME 

2868
01:54:07,471 --> 01:54:09,740
WAS THE BEGINNING WHERE THEY HAD

2869
01:54:09,740 --> 01:54:13,744
TO DO A BUNCH OF BLOOD DRAWS.  

2870
01:54:13,744 --> 01:54:16,113
BECAUSE I AM A COLLEGE STUDENT I

2871
01:54:16,113 --> 01:54:19,183
AM MISSING CLASS BUT I AM GOING 

2872
01:54:19,183 --> 01:54:21,085
IN FOR A BLOOD DRAW EVERY OTHER 

2873
01:54:21,085 --> 01:54:22,386
WEEK AND THE ISSUE WOULD 

2874
01:54:22,386 --> 01:54:25,990
BECOME -- WE WOULD GET THE BLOOD

2875
01:54:25,990 --> 01:54:27,758
DRAWN AND I WOULD SIT THERE FOR 

2876
01:54:27,758 --> 01:54:30,695
TWO TO THREE HOURS AND I HAD TO 

2877
01:54:30,695 --> 01:54:32,029
WAIT AND DO MY BLOOD AGAIN SO 

2878
01:54:32,029 --> 01:54:34,232
THERE WAS A BUNCH OF DEAD SPACE 

2879
01:54:34,232 --> 01:54:36,033
IN BETWEEN WHERE I WOULD JUST BE

2880
01:54:36,033 --> 01:54:37,668
SITTING THERE DOING NOTHING 

2881
01:54:37,668 --> 01:54:40,371
EXACTLY, BUT I HAD TO DO THAT 

2882
01:54:40,371 --> 01:54:41,038
BECAUSE OBVIOUSLY THE CLINICAL 

2883
01:54:41,038 --> 01:54:42,640
TRIAL AND IT WAS JUST VERY TOUGH

2884
01:54:42,640 --> 01:54:44,342
BECAUSE, YOU KNOW, I HAD A BUNCH

2885
01:54:44,342 --> 01:54:46,677
OF CLASSES AND IT WAS FRESHMAN 

2886
01:54:46,677 --> 01:54:51,115
YEAR SO I WAS STILL ADJUSTING TO

2887
01:54:51,115 --> 01:54:51,716
COLLEGE.  KNEW UNFORTUNATELY 

2888
01:54:51,716 --> 01:54:53,651
LIKE WHAT THE OTHERS SAID. 

2889
01:54:53,651 --> 01:54:55,653
THEY TREATED YOU AS A TEAM 

2890
01:54:55,653 --> 01:54:55,887
MEMBER. 

2891
01:54:55,887 --> 01:54:57,288
I FELT THE SAME WAY.  I ACTUALLY

2892
01:54:57,288 --> 01:55:00,157
WAS WORKING WITH THE DOCTOR THAT

2893
01:55:00,157 --> 01:55:02,360
I MET WHEN I WAS EIGHT YEARS OLD

2894
01:55:02,360 --> 01:55:03,895
AND THEN LEFT FOR LIKE TEN YEARS

2895
01:55:03,895 --> 01:55:06,464
AND I NEVER SAW HIM BUT I CAME 

2896
01:55:06,464 --> 01:55:07,565
BACK AND HE WAS STILL THERE AND 

2897
01:55:07,565 --> 01:55:09,500
NOW HE WAS DOING THE CLINICAL 

2898
01:55:09,500 --> 01:55:11,102
TRIAL SO, YOU KNOW, IN THAT 

2899
01:55:11,102 --> 01:55:12,937
SENSE AT LEAST I WAS ABLE TO, 

2900
01:55:12,937 --> 01:55:14,005
YOU KNOW, RECONNECT WITH HIM AND

2901
01:55:14,005 --> 01:55:15,940
KIND OF JUST TALK ABOUT, LIKE, 

2902
01:55:15,940 --> 01:55:17,408
WHAT HAS BEEN GOING ON THESE 

2903
01:55:17,408 --> 01:55:19,577
PAST TEN YEARS WHICH WAS NICE.  

2904
01:55:19,577 --> 01:55:22,013
YOU KNOW, WHEN YOU HAVE TO SIT 

2905
01:55:22,013 --> 01:55:23,814
THERE FOR ABOUT TWO HOURS EVERY 

2906
01:55:23,814 --> 01:55:26,450
OTHER WEEK.  OVERALL THE 

2907
01:55:26,450 --> 01:55:27,451
EXPERIENCE, I WOULD STILL DO IT 

2908
01:55:27,451 --> 01:55:28,586
AGAIN.  NOW THAT I'M LONGER IN 

2909
01:55:28,586 --> 01:55:30,054
THE TRIAL, IT'S BEEN ABOUT A 

2910
01:55:30,054 --> 01:55:32,857
YEAR AND A HALF, TWO YEARS.  I 

2911
01:55:32,857 --> 01:55:34,992
MEAN, I AM THERE FOR PROBABLY 

2912
01:55:34,992 --> 01:55:36,594
LIKE 40 MINUTES AND THEN WE'RE 

2913
01:55:36,594 --> 01:55:38,029
DONE.  ALL WE HAVE TO DO IS DRAW

2914
01:55:38,029 --> 01:55:39,964
THE BLOOD AND, YOU KNOW, AGAIN, 

2915
01:55:39,964 --> 01:55:42,800
AS WAS MENTIONED BEFORE THE 

2916
01:55:42,800 --> 01:55:45,369
CLINICAL TRIAL DOES WORK, LIKE 

2917
01:55:45,369 --> 01:55:47,905
MY STEROID USAGE WENT FROM 25 

2918
01:55:47,905 --> 01:55:49,006
MILLIGRAMS TO 17 AND A HALF AND,

2919
01:55:49,006 --> 01:55:52,343
YOU KNOW, I FEEL GREAT.  I DON'T

2920
01:55:52,343 --> 01:55:53,911
FEEL ANY SIDE EFFECTS OR ANY 

2921
01:55:53,911 --> 01:55:56,948
RISK AT ALL AND I MEAN, 

2922
01:55:56,948 --> 01:55:59,583
UNFORTUNATELY THE CLINICAL 

2923
01:55:59,583 --> 01:56:02,253
TRIAL, THAT UNFORTUNATELY FOR ME

2924
01:56:02,253 --> 01:56:07,758
BECAUSE I WILL HAVE TO DO THIS 

2925
01:56:07,758 --> 01:56:10,061
IN DECEMBER WHEN THE CLINICAL 

2926
01:56:10,061 --> 01:56:12,163
TRIAL ENDS.  WE'LL SEE.

2927
01:56:12,163 --> 01:56:13,898
>> NINA, IT SOUNDS LIKE SO
FAR 

2928
01:56:13,898 --> 01:56:15,866
YOU'VE BEEN IN A NATURAL HISTORY

2929
01:56:15,866 --> 01:56:17,568
STUDY AND SOUNDS LIKE YOUR SONS 

2930
01:56:17,568 --> 01:56:18,903
AS WELL.  TELL US A BIT ABOUT 

2931
01:56:18,903 --> 01:56:22,073
WHAT THOSE VISITS ARE LIKE.

2932
01:56:22,073 --> 01:56:27,745
>> YEAH.  ABSOLUTELY.  SO
I 

2933
01:56:27,745 --> 01:56:29,680
THINK THAT THEY'RE UNIQUE 

2934
01:56:29,680 --> 01:56:32,583
CHALLENGES FOR ADULTS AND FOR 

2935
01:56:32,583 --> 01:56:33,918
CHILDREN.  WE DEFINITELY, ALL OF

2936
01:56:33,918 --> 01:56:36,921
US TO BE ABLE TO DO THIS IS, 

2937
01:56:36,921 --> 01:56:38,556
EXTREMELY A BLESSING.  IT'S A 

2938
01:56:38,556 --> 01:56:39,890
PRIVILEGE TO BE A PART OF THIS 

2939
01:56:39,890 --> 01:56:42,660
BUT SOMETIMES WHEN YOU REFLECT 

2940
01:56:42,660 --> 01:56:47,765
ON WHAT THE EXPERIENCE IS LIKE, 

2941
01:56:47,765 --> 01:56:51,235
YOU KNOW, SOMETIMES WE, IT'S 

2942
01:56:51,235 --> 01:56:51,869
OVERSHADOWED REALLY THAT 

2943
01:56:51,869 --> 01:56:53,771
ANTICIPATION OF BEING PART OF 

2944
01:56:53,771 --> 01:56:54,872
SOMETHING REALLY SPECIAL AND 

2945
01:56:54,872 --> 01:56:56,507
GREAT THAT CAN HELP OTHERS.  

2946
01:56:56,507 --> 01:56:58,809
SOMETIMES CAN BE OVERSHADOWED BY

2947
01:56:58,809 --> 01:57:00,611
THE REALITIES OF BEING IN A 

2948
01:57:00,611 --> 01:57:03,314
STUDY AND THE STUDY ENVIRONMENT 

2949
01:57:03,314 --> 01:57:06,517
PER SE.  SO FOR US WE HAD TO BE 

2950
01:57:06,517 --> 01:57:10,921
THERE A WEEK AND IT WAS PRETTY 

2951
01:57:10,921 --> 01:57:13,290
GRUELLING IN THAT, YOU KNOW, 

2952
01:57:13,290 --> 01:57:14,725
BECAUSE WE'RE -- AND I HAVE TO 

2953
01:57:14,725 --> 01:57:16,394
PREFACE THIS BY THE FACT THAT 

2954
01:57:16,394 --> 01:57:19,630
NOBODY HAS EVER STUDIED THIS 

2955
01:57:19,630 --> 01:57:23,901
BEFORE.  SO IT HAS BEEN A LOT OF

2956
01:57:23,901 --> 01:57:26,137
LET'S DO EVERY SINGLE TEST 

2957
01:57:26,137 --> 01:57:29,373
POSSIBLE AND THEN BEGIN TO SORT 

2958
01:57:29,373 --> 01:57:32,076
OF REFINE THOSE, RIGHT?  AS WE 

2959
01:57:32,076 --> 01:57:33,244
UNDERSTOOD YES IT DOESN'T IMPACT

2960
01:57:33,244 --> 01:57:36,781
THIS AREA OR YES, IT DOESN'T 

2961
01:57:36,781 --> 01:57:40,484
REALLY -- OR YES IT DOES IMPACT 

2962
01:57:40,484 --> 01:57:42,486
THIS AREA SO NOW WE NEED MORE 

2963
01:57:42,486 --> 01:57:44,355
TESTS FOR THIS.  IN A SENSE WE 

2964
01:57:44,355 --> 01:57:47,191
REALLY ARE CHARTING A NEW PATH, 

2965
01:57:47,191 --> 01:57:50,094
RIGHT?  SO THAT CAN ALWAYS BE 

2966
01:57:50,094 --> 01:57:51,695
DIFFICULT BECAUSE YOU HAVE A 

2967
01:57:51,695 --> 01:57:52,897
SCHEDULE OF APPOINTMENTS AND 

2968
01:57:52,897 --> 01:57:55,299
TESTS AND PROCEDURES THAT NOT 

2969
01:57:55,299 --> 01:57:58,402
NECESSARILY ARE THE SAME.  RIGHT

2970
01:58:00,671 --> 01:58:02,073
RIGHT?  BECAUSE THE FIRST TIME 

2971
01:58:02,073 --> 01:58:05,910
WE WENT THERE WE HAD A WHOLE 

2972
01:58:05,910 --> 01:58:08,145
BATTERY OF TESTS.  AND SOME WERE

2973
01:58:08,145 --> 01:58:10,014
A LITTLE BIT OF TESTS THAT WERE 

2974
01:58:10,014 --> 01:58:10,748
MORE INTENSE THAN OTHERS AND I 

2975
01:58:10,748 --> 01:58:14,885
THINK IT'S IMPORTANT FOR US AS 

2976
01:58:14,885 --> 01:58:16,587
PATIENTS AND WHO KNOW OR 

2977
01:58:16,587 --> 01:58:18,122
CONDITION THE BEST TO BE ABLE TO

2978
01:58:18,122 --> 01:58:20,091
SAY NO, I DON'T WANT THIS TEST. 

2979
01:58:20,091 --> 01:58:22,893
THIS TEST DOESN'T MAKE SENSE.  

2980
01:58:22,893 --> 01:58:23,961
BECAUSE WE ARE THE BEST PEOPLE 

2981
01:58:23,961 --> 01:58:26,430
TO PROVIDE THAT INPUT.  AND I 

2982
01:58:26,430 --> 01:58:29,900
THINK IT'S IMPORTANT FOR THE 

2983
01:58:29,900 --> 01:58:32,970
RESEARCH FINGER TO LISTEN AND 

2984
01:58:32,970 --> 01:58:36,006
UNDERSTAND THAT AND TO 

2985
01:58:36,006 --> 01:58:36,941
CONFERENCE WITH US.  TO SIT 

2986
01:58:36,941 --> 01:58:40,344
THERE AT THE TABLE AND PLAN IT 

2987
01:58:40,344 --> 01:58:43,547
OUT SO LIKE I MENTIONED OURS IS 

2988
01:58:43,547 --> 01:58:45,449
A UNIQUE RESEARCH PATH IT'S NOT 

2989
01:58:45,449 --> 01:58:47,218
YOUR STANDARD SET OF TEST.  IT'S

2990
01:58:47,218 --> 01:58:50,087
SO IMPORTANT FOR US TO 

2991
01:58:50,087 --> 01:58:51,188
COMMUNICATE AND TO HAVE 

2992
01:58:51,188 --> 01:58:52,256
CONVERSATION AROUND WHAT THIS 

2993
01:58:52,256 --> 01:58:54,158
TEST DAY IS GOING TO LOOK LIKE, 

2994
01:58:54,158 --> 01:58:55,860
WHAT MY SCHEDULE IS GOING TO BE 

2995
01:58:55,860 --> 01:58:57,027
AND WHETHER THIS IS IMPORTANT OR

2996
01:58:57,027 --> 01:58:59,997
IS THIS JUST GOING TO BE 

2997
01:58:59,997 --> 01:59:02,099
BURDENSOME WITH NO REAL BENEFIT 

2998
01:59:02,099 --> 01:59:04,602
TO THE UNDERSTANDING OF THE 

2999
01:59:04,602 --> 01:59:06,604
PATIENT JOURNEY OR THE PATIENT 

3000
01:59:06,604 --> 01:59:07,938
NEEDS INTO PROGRESSION SO I 

3001
01:59:07,938 --> 01:59:09,540
THINK WE HAD A LOT OF OPEN 

3002
01:59:09,540 --> 01:59:10,641
CONVERSATION WHICH I REALLY, 

3003
01:59:10,641 --> 01:59:12,743
REALLY APPRECIATED.  WE WERE 

3004
01:59:12,743 --> 01:59:16,180
ABLE TO CHANGE OUR SCHEDULE 

3005
01:59:16,180 --> 01:59:19,216
QUITE A BIT FROM TIME TO TIME SO

3006
01:59:19,216 --> 01:59:21,252
IT WASN'T AS BURDENSOME TO THE 

3007
01:59:21,252 --> 01:59:23,420
PATIENTS AND FOR ME BEING THE 

3008
01:59:23,420 --> 01:59:25,856
ADULT AND THE ONE WHO HAS LIVED 

3009
01:59:25,856 --> 01:59:27,024
WITH THIS DISEASE THE LONGEST I 

3010
01:59:27,024 --> 01:59:29,160
AM THE EXPERT IN THE ROOM AND I 

3011
01:59:29,160 --> 01:59:30,461
THINK THAT IS SO IMPORTANT TO 

3012
01:59:30,461 --> 01:59:32,096
UNDERSTAND AS RESEARCHERS, YOUR 

3013
01:59:32,096 --> 01:59:36,400
PATIENT IS THE EXPERT.  SO YOU 

3014
01:59:36,400 --> 01:59:38,102
MAY HAVE ALL THE SCIENTIFIC 

3015
01:59:38,102 --> 01:59:39,703
INFORMATION BUT REALLY LIVING 

3016
01:59:39,703 --> 01:59:41,472
THE DISEASE IS SOMETHING SO 

3017
01:59:41,472 --> 01:59:43,174
DIFFERENT.  I CAN TELL YOU FROM 

3018
01:59:43,174 --> 01:59:44,608
MY EXPERIENCE, YOU KNOW, WHAT 

3019
01:59:44,608 --> 01:59:48,445
PARTS OF MY BODY MY DISEASE HAS 

3020
01:59:48,445 --> 01:59:50,114
IMPACTED WITHOUT YOU RUNNING TEN

3021
01:59:50,114 --> 01:59:52,016
BATTERY OF TESTS, RIGHT?  SO I 

3022
01:59:52,016 --> 01:59:53,651
THINK IT'S A GIVE AND TAKE.  

3023
01:59:53,651 --> 01:59:56,420
IT'S ABOUT UNDERSTANDING TO BE 

3024
01:59:56,420 --> 01:59:58,756
ABLE TO THEN SCHEDULE 

3025
01:59:58,756 --> 01:59:59,690
ASSESSMENTS ACCORDINGLY AND 

3026
01:59:59,690 --> 02:00:02,927
REALLY TAKE THAT INPUT SO THAT 

3027
02:00:02,927 --> 02:00:04,595
WAS REALLY VERY CRUCIAL FOR OUR 

3028
02:00:04,595 --> 02:00:06,730
JOURNEY AND OUR PATH AT THE 

3029
02:00:06,730 --> 02:00:08,599
CENTER AND I HAVE TO SAY ALL OUR

3030
02:00:08,599 --> 02:00:10,134
RESEARCHERS WHO WERE SO OPEN AND

3031
02:00:10,134 --> 02:00:12,369
SO WILLING TO UNDERSTAND THAT 

3032
02:00:12,369 --> 02:00:15,439
AND PIVOT AS NEEDED.  I THINK 

3033
02:00:15,439 --> 02:00:18,442
THAT AS ALREADY MENTIONED, IT'S 

3034
02:00:18,442 --> 02:00:20,811
THE RELATIONSHIP BETWEEN THE 

3035
02:00:20,811 --> 02:00:23,647
RESEARCHERS THAT CAN BE SO 

3036
02:00:23,647 --> 02:00:24,748
EMPOWERING.  AND POSITIVE AND 

3037
02:00:24,748 --> 02:00:25,816
MAKE THE EXPERIENCE MORE 

3038
02:00:25,816 --> 02:00:30,020
MANAGEABLE.  WE HAVE HAD A 

3039
02:00:30,020 --> 02:00:30,921
REALLY POSITIVE EXPERIENCE.  I 

3040
02:00:30,921 --> 02:00:33,224
WOULD SAY THAT, YOU KNOW, IT'S 

3041
02:00:33,224 --> 02:00:35,726
IMPORTANT FOR DISEASES LIKE 

3042
02:00:35,726 --> 02:00:36,961
OURS.  LIKE SOMETIMES WE COME TO

3043
02:00:36,961 --> 02:00:38,596
THE CENTER I HAD NOTICED THAT 

3044
02:00:38,596 --> 02:00:40,030
THE PERSON WHO DID MY EYE TEST 

3045
02:00:40,030 --> 02:00:43,500
OR THE ONE WHO DID MY AUDITORY 

3046
02:00:43,500 --> 02:00:45,169
TEST WAS NOT THE SECOND PERSON 

3047
02:00:45,169 --> 02:00:46,704
THE SAME TIME AROUND SO IT 

3048
02:00:46,704 --> 02:00:48,606
ALMOST FEELS LIKE THEY DIDN'T 

3049
02:00:48,606 --> 02:00:50,040
UNDERSTAND WHAT THEY WERE SEEING

3050
02:00:50,040 --> 02:00:51,809
AND SO THEY STARTED ORDERING 

3051
02:00:51,809 --> 02:00:54,078
MORE THINGS BUT IF WE HAD THE 

3052
02:00:54,078 --> 02:00:57,748
SAME PERSON WHO WAS DOING THE 

3053
02:00:57,748 --> 02:00:59,416
TESTING AT THE SAME SET OF 

3054
02:00:59,416 --> 02:01:00,951
SCHEDULE, THEY WOULD HAVE BEEN 

3055
02:01:00,951 --> 02:01:02,553
ABLE TO PIECE THE -- MAKE THE 

3056
02:01:02,553 --> 02:01:04,588
PIECES MAKE SENSE IN THE PUZZLE.

3057
02:01:04,588 --> 02:01:06,090
AND THEY WOULDN'T THEN, YOU 

3058
02:01:06,090 --> 02:01:07,992
KNOW, KEEP US LONGER OR, YOU 

3059
02:01:07,992 --> 02:01:09,893
KNOW, SAY, OH I THINK I FOUND 

3060
02:01:09,893 --> 02:01:11,128
SOMETHING AND THAT CAUSES A LOT 

3061
02:01:11,128 --> 02:01:14,098
OF ANXIETY FOR US AS PATIENTS, 

3062
02:01:14,098 --> 02:01:16,800
RIGHT?  SO THAT WAS A CHANGE 

3063
02:01:16,800 --> 02:01:18,902
THAT I HAD REQUESTED THAT, YOU 

3064
02:01:18,902 --> 02:01:21,105
KNOW, EVERY PERSON THAT DOES OUR

3065
02:01:21,105 --> 02:01:24,642
TESTS REMAIN THE SAME AS MUCH AS

3066
02:01:24,642 --> 02:01:28,145
POSSIBLE.  AND SO THEN THE STUDY

3067
02:01:28,145 --> 02:01:30,514
TEAM BEGAN TO SEE THE PICTURE.  

3068
02:01:30,514 --> 02:01:32,449
RIGHT?  IT WAS THE STORY STARTED

3069
02:01:32,449 --> 02:01:33,651
MAKING SENSE AND I THINK 

3070
02:01:33,651 --> 02:01:36,587
RESEARCH IS ABOUT THAT.  

3071
02:01:36,587 --> 02:01:37,921
ESPECIALLY IN NATURAL STUDY IT'S

3072
02:01:37,921 --> 02:01:39,390
ABOUT FINDING THE PUZZLE PIECES 

3073
02:01:39,390 --> 02:01:41,725
THAT THEN TELL A STORY OF THE 

3074
02:01:41,725 --> 02:01:43,827
DISEASE.  BUT IF YOU KEEP 

3075
02:01:43,827 --> 02:01:45,929
CHANGING PEOPLE OUT.  THEN THAT 

3076
02:01:45,929 --> 02:01:46,697
BECOMES HARDER AND MORE 

3077
02:01:46,697 --> 02:01:48,465
BURDENSOME ON THE PATIENT TO 

3078
02:01:48,465 --> 02:01:51,835
HAVE TO TELL, YOU KNOW, MY STORY

3079
02:01:51,835 --> 02:01:54,038
FROM A-Z AGAIN TO A PERSON 

3080
02:01:54,038 --> 02:01:56,040
SOMETIMES THAT BECOMES REALLY 

3081
02:01:56,040 --> 02:01:57,441
HARD AND YOU LOSE IMPORTANT 

3082
02:01:57,441 --> 02:02:00,311
PIECES OF THE STORY.  SO THAT 

3083
02:02:00,311 --> 02:02:02,112
WAS THE FEEDBACK I HAD GIVEN TO 

3084
02:02:02,112 --> 02:02:05,349
MY RESEARCH TEAM AND I QUICKLY 

3085
02:02:05,349 --> 02:02:06,717
MADE THAT CHANGE AND THEY TRIED 

3086
02:02:06,717 --> 02:02:08,852
TO GET EVERYBODY ON BOARD THAT 

3087
02:02:08,852 --> 02:02:11,989
WAS SEEING THE DIFFERENT 

3088
02:02:11,989 --> 02:02:13,557
PATIENTS IN OUR COMMUNITY TO BE 

3089
02:02:13,557 --> 02:02:15,993
THE SAME BECAUSE REMEMBER ONCE 

3090
02:02:15,993 --> 02:02:18,128
WE ENTERED THE NATURAL HISTORY 

3091
02:02:18,128 --> 02:02:21,031
STUDY WAS NOT JUST ME AND MY 

3092
02:02:21,031 --> 02:02:23,734
CHILDREN BUT WE HAD THREE OTHER 

3093
02:02:23,734 --> 02:02:24,268
PATIENTS THAT CAME FROM 

3094
02:02:24,268 --> 02:02:26,203
DIFFERENT PARTS OF THE WORLD AND

3095
02:02:26,203 --> 02:02:28,105
THIS DISEASE JOURNEY, THAT ONE 

3096
02:02:28,105 --> 02:02:30,674
PERSON WAS SEEING ALL THESE 

3097
02:02:30,674 --> 02:02:32,109
CHILDREN.  AND NOT LIKE FOUR 

3098
02:02:32,109 --> 02:02:33,510
DIFFERENT PEOPLE SEEING, YOU 

3099
02:02:33,510 --> 02:02:35,946
KNOW, THESE CHILDREN, YOU JUST 

3100
02:02:35,946 --> 02:02:39,183
CAN'T MAKE SENSE OF THE STORY.  

3101
02:02:39,183 --> 02:02:41,452
SO THAT WAS SOMETHING THAT WAS 

3102
02:02:41,452 --> 02:02:44,054
IMPORTANT TO US.  THE OTHER 

3103
02:02:44,054 --> 02:02:46,657
THING I WOULD SAY IS THE 

3104
02:02:46,657 --> 02:02:48,592
CHILDREN.  SO MY KIDS ARE RIGHT 

3105
02:02:48,592 --> 02:02:50,828
NOW 14 AND 16 AND WHEN THEY 

3106
02:02:50,828 --> 02:02:52,896
STARTED, THEY WERE YOUNGER THAN 

3107
02:02:52,896 --> 02:02:54,365
THAT.  TWO YEARS YOUNGER THAN 

3108
02:02:54,365 --> 02:02:55,899
THAT.  IT WAS REALLY DIFFICULT 

3109
02:02:55,899 --> 02:02:57,534
IN THE BEGINNING.  THERE IS A 

3110
02:02:57,534 --> 02:03:01,605
SENSE OF LIKE ONCE YOU ENTER, 

3111
02:03:01,605 --> 02:03:03,307
ESPECIALLY SINCE AFTER COVID, 

3112
02:03:03,307 --> 02:03:04,308
SOME OF THE RULES HAD CHANGED SO

3113
02:03:04,308 --> 02:03:08,112
THERE WAS A SENSE OF FEELING 

3114
02:03:08,112 --> 02:03:09,780
TRAPPED.  I KEPT HEARING FROM MY

3115
02:03:09,780 --> 02:03:12,116
KIDS THAT THEY WERE GETTING 

3116
02:03:12,116 --> 02:03:12,916
RESTLESS AND FRUSTRATED AND I 

3117
02:03:12,916 --> 02:03:14,551
THINK WHILE THE CENTER HAS LOTS 

3118
02:03:14,551 --> 02:03:20,124
OF THINGS FOR CHILDREN WHO ARE 

3119
02:03:20,124 --> 02:03:20,824
YOUNG

3120
02:03:20,824 --> 02:03:25,529
YOUNGER I THINK THAT TEENAGE OF 

3121
02:03:25,529 --> 02:03:27,965
13 AND ABOVE WAS REALLY HARD.  

3122
02:03:27,965 --> 02:03:29,400
THERE'S NOT AGE APPROPRIATE 

3123
02:03:29,400 --> 02:03:30,434
THINGS TO DO.  AND WE WEREN'T 

3124
02:03:30,434 --> 02:03:33,303
ABLE TO LEAVE THE CENTER.  WHICH

3125
02:03:33,303 --> 02:03:39,410
I FOUGHT FOR.  BUT I LOST.  AND 

3126
02:03:39,410 --> 02:03:42,212
JUST KEPT SAYING IT WAS 

3127
02:03:42,212 --> 02:03:43,347
IMPORTANT FOR THESE CHILDREN TO 

3128
02:03:43,347 --> 02:03:45,449
HAVE PATH TO LEAVE THE CENTER IF

3129
02:03:45,449 --> 02:03:46,517
THEY'RE NOT HOOKED ONTO ANYTHING

3130
02:03:46,517 --> 02:03:48,952
THEY SHOULD BE ABLE TO LEAVE THE

3131
02:03:48,952 --> 02:03:50,154
CENTER BUT WE WEREN'T ABLE TO 

3132
02:03:50,154 --> 02:03:51,522
AND THAT FEELING OF BEING 

3133
02:03:51,522 --> 02:03:53,924
TRAPPED IN THERE CAN INCREASE A 

3134
02:03:53,924 --> 02:03:56,560
SENSE OF FEELING, YOU KNOW, 

3135
02:03:56,560 --> 02:03:58,395
STRESS AND ANXIETY.  EVEN THOUGH

3136
02:03:58,395 --> 02:03:59,496
THEY KNOW WHAT THEY'RE THERE 

3137
02:03:59,496 --> 02:04:00,597
FOR, THEY CAN UNDERSTAND IT.  

3138
02:04:00,597 --> 02:04:04,601
THEY WERE FINDING IT HARD TO 

3139
02:04:04,601 --> 02:04:08,672
COPE WITH THE WEEK LONG STAY 

3140
02:04:08,672 --> 02:04:11,975
ESPECIALLY WITH THE SENSE OF I 

3141
02:04:11,975 --> 02:04:15,212
FEEL TRAPPED AND HELPLESS 

3142
02:04:15,212 --> 02:04:16,647
COMPOUNDED WITH THE FACT THAT 

3143
02:04:16,647 --> 02:04:18,449
CHILDREN VALUE AUTONOMY, THE 

3144
02:04:18,449 --> 02:04:20,150
ABILITY TO MAKE CHOICES AND 

3145
02:04:20,150 --> 02:04:21,852
BEING IN A CONTROLLED 

3146
02:04:21,852 --> 02:04:23,487
ENVIRONMENT CAN BE 

3147
02:04:23,487 --> 02:04:24,588
DISHEARTENING, IT'S NOTHING THE 

3148
02:04:24,588 --> 02:04:25,422
FAULT OF OUR RESEARCH TEAM IT'S 

3149
02:04:25,422 --> 02:04:29,426
JUST THE WAY RESEARCH IS SET UP.

3150
02:04:29,426 --> 02:04:35,232
SO I'M WONDERING HOW TO MAKE 

3151
02:04:35,232 --> 02:04:36,099
THAT EASIER TO MAKE IT TO LEAVE 

3152
02:04:36,099 --> 02:04:38,969
THE CENTER.  THERE'S LOTS OF 

3153
02:04:38,969 --> 02:04:39,903
THINGS AROUND TO DO IN THE AREA.

3154
02:04:39,903 --> 02:04:41,905
WE DIDN'T HAVE A WAY TO DO THAT.

3155
02:04:41,905 --> 02:04:43,907
THERE WAS NO PATH TO GET ON A 

3156
02:04:43,907 --> 02:04:45,609
BUS AND GO SOMEWHERE SO BRINGING

3157
02:04:45,609 --> 02:04:47,578
IN SOME OF THOSE WOULD BE NICE. 

3158
02:04:47,578 --> 02:04:48,879
THE OTHER THING IS THAT YOU 

3159
02:04:48,879 --> 02:04:52,282
KNOW, FOR A WEEK, YOU ARE 

3160
02:04:52,282 --> 02:04:53,750
WITHOUT YOUR FRIENDS, YOU'RE 

3161
02:04:53,750 --> 02:04:56,854
DISCONNECT FROM SCHOOL.  SO 

3162
02:04:56,854 --> 02:05:01,091
THERE IS A LOT OF ANXIETY ON HOW

3163
02:05:01,091 --> 02:05:02,459
TO GET BACK TO OUR -- THE 

3164
02:05:02,459 --> 02:05:05,762
ACADEMIC STANDING OR THE MISSING

3165
02:05:05,762 --> 02:05:07,831
OUT OF ACADEMICS SO HOW CAN WE 

3166
02:05:07,831 --> 02:05:09,433
FACTOR THAT IN ESPECIALLY WHEN 

3167
02:05:09,433 --> 02:05:12,035
YOUR WHOLE DAY IS BUSY WITH 

3168
02:05:12,035 --> 02:05:13,804
ACTIVITY AND TESTS AND THINGS.  

3169
02:05:13,804 --> 02:05:16,773
I THINK IT DOES TAKE A CHUNK OUT

3170
02:05:16,773 --> 02:05:19,776
OF THEIR SOCIAL LIVES.  SO, YOU 

3171
02:05:19,776 --> 02:05:21,879
KNOW, THERE WAS, ESPECIALLY FOR 

3172
02:05:21,879 --> 02:05:23,447
US, THERE'S NO PEER GROUP, 

3173
02:05:23,447 --> 02:05:24,982
RIGHT?  THERE'S NO PEER GROUP 

3174
02:05:24,982 --> 02:05:27,150
ACTIVITY BECAUSE NOBODY ELSE HAS

3175
02:05:27,150 --> 02:05:35,826
THIS DISEASE.  SO THAT IS 

3176
02:05:35,826 --> 02:05:38,362
ANOTHER THING TO CONSIDER.  TO 

3177
02:05:38,362 --> 02:05:39,463
GET CHILDREN IN THESE 

3178
02:05:39,463 --> 02:05:40,631
DISCUSSIONS AND SORT OF VOICE 

3179
02:05:40,631 --> 02:05:41,865
IT.  MORE AND MORE WHEN I THINK 

3180
02:05:41,865 --> 02:05:45,235
ABOUT IT, THE MENTAL HEALTH 

3181
02:05:45,235 --> 02:05:48,005
IMPACT OF BEING IN A STUDY OR 

3182
02:05:48,005 --> 02:05:51,008
BEING IN RESEARCH IS NOT GIVEN 

3183
02:05:51,008 --> 02:05:53,410
ENOUGH ATTENTION.  AND SO, YOU 

3184
02:05:53,410 --> 02:05:55,412
KNOW, ARE THERE COUNSELORS THAT 

3185
02:05:55,412 --> 02:05:58,215
THESE KIDS CAN TALK TO?  AS THEY

3186
02:05:58,215 --> 02:06:00,584
ARE GOING THROUGH ALL THIS?  

3187
02:06:00,584 --> 02:06:02,553
BUT, YES, I WILL STOP THERE 

3188
02:06:02,553 --> 02:06:03,153
BECAUSE....

3189
02:06:03,153 --> 02:06:04,021
>> THANK YOU VERY MUCH
THAT WAS 

3190
02:06:04,021 --> 02:06:05,789
LOVELY AND A LOT TO TAKE IN.  

3191
02:06:05,789 --> 02:06:08,158
AND I AM GOING TO PUT A COUPLE 

3192
02:06:08,158 --> 02:06:15,365
WORDS IN YOUR MOUTH.  IN 

3193
02:06:15,365 --> 02:06:17,000
TRANSITIONING IS WHAT IS THE 

3194
02:06:17,000 --> 02:06:19,870
MOST IMPORTANT THING FOR STUDY 

3195
02:06:19,870 --> 02:06:21,872
MEMBERS TO KNOW ABOUT 

3196
02:06:21,872 --> 02:06:22,639
PARTICIPANTS AND ONE YOU 

3197
02:06:22,639 --> 02:06:23,640
HIGHLIGHTED IS THAT YOU'RE THE 

3198
02:06:23,640 --> 02:06:25,075
EXPERT.  ESPECIALLY WHEN IT'S A 

3199
02:06:25,075 --> 02:06:27,044
RARE DISEASE, THAT YOU'RE A TEAM

3200
02:06:27,044 --> 02:06:28,445
MEMBER.  AND THAT YOU WANT, LIKE

3201
02:06:28,445 --> 02:06:29,813
YOU WANT TO BE A TEAM MEMBER.  

3202
02:06:29,813 --> 02:06:31,882
THAT MAY NOT BE TRUE FOR 

3203
02:06:31,882 --> 02:06:34,484
EVERYONE BUT FOR YOU, IN 

3204
02:06:34,484 --> 02:06:35,986
PARTICULAR, OF BEING A TEAM 

3205
02:06:35,986 --> 02:06:38,889
MEMBER AND RESPECTING THAT ROLE 

3206
02:06:38,889 --> 02:06:40,023
AND THEN ALSO JUST THAT 

3207
02:06:40,023 --> 02:06:42,926
PARTICIPANTS ARE HUMANS.  RIGHT?

3208
02:06:42,926 --> 02:06:44,761
NOT TO SAY THAT THAT'S, YOU 

3209
02:06:44,761 --> 02:06:47,831
KNOW, OF COURSE THAT'S OBVIOUS. 

3210
02:06:47,831 --> 02:06:49,299
BUT THE SORT OF THINGS THAT YOU 

3211
02:06:49,299 --> 02:06:51,535
WERE TALKING ABOUT IN TERMS OF, 

3212
02:06:51,535 --> 02:06:53,737
YOU KNOW, YOUR KIDS, THAT THEY 

3213
02:06:53,737 --> 02:06:56,840
ARE HUMAN TEENAGERS.  AND HAVE 

3214
02:06:56,840 --> 02:06:59,276
PARTICULAR, YOU KNOW, NEEDS AND 

3215
02:06:59,276 --> 02:07:00,143
INTERESTS THAT IT WOULD BE 

3216
02:07:00,143 --> 02:07:02,179
IMPORTANT FOR THE STUDY TEAM TO 

3217
02:07:02,179 --> 02:07:05,148
TAKE, YOU KNOW, TO KEEP IN MIND.

3218
02:07:05,148 --> 02:07:08,185
ANYTHING ELSE YOU WANT TO ADD TO

3219
02:07:08,185 --> 02:07:09,753
THAT LIST OF WHAT YOU'VE MADE 

3220
02:07:09,753 --> 02:07:14,191
YOUR STUDY TEAM AWARE OF OR 

3221
02:07:14,191 --> 02:07:15,892
ANYTHING IN PARTICULAR THAT YOU 

3222
02:07:15,892 --> 02:07:17,694
WANT TO EMPHASIZE ABOUT WHAT 

3223
02:07:17,694 --> 02:07:21,164
THEY SHOULD KNOW ABOUT THEIR 

3224
02:07:21,164 --> 02:07:21,498
PARTICIPANTS?

3225
02:07:21,498 --> 02:07:24,501
>> YES, I WILL GIVE YOU AN

3226
02:07:24,501 --> 02:07:25,102
ILLUSTRATIVE EXAMPLE AFTER A 

3227
02:07:25,102 --> 02:07:26,970
REALLY LONG DAY OF TESTS AND 

3228
02:07:26,970 --> 02:07:28,572
THIS WAS PROBABLY BY THE FOURTH 

3229
02:07:28,572 --> 02:07:32,209
DAY, OF THE WEEK, WE WERE THERE,

3230
02:07:32,209 --> 02:07:34,244
I OVERHEARD A CONVERSATION 

3231
02:07:34,244 --> 02:07:36,046
BETWEEN MY KIDS AND MY YOUNGER 

3232
02:07:36,046 --> 02:07:39,282
ONE, HE WAS REALLY TIRED.  YOU 

3233
02:07:39,282 --> 02:07:43,387
KNOW, THEY HAD POKED HIM MANY 

3234
02:07:43,387 --> 02:07:44,221
TIMES AND MISSED THE VEIN AND HE

3235
02:07:44,221 --> 02:07:48,859
WAS REALLY EMOTIONALLY KIND OF 

3236
02:07:48,859 --> 02:07:51,461
SPENT AND WE HAD GONE INTO MANY 

3237
02:07:51,461 --> 02:07:52,596
EASIER TESTS, ONE THAT HE 

3238
02:07:52,596 --> 02:08:00,504
ACTUALLY ENJOYED DOING AND HE 

3239
02:08:00,504 --> 02:08:02,639
LOOKED AT HIS BROTHER AND SAID 

3240
02:08:02,639 --> 02:08:04,508
DO WE HAVE TO DO THIS AND MY 

3241
02:08:04,508 --> 02:08:09,413
OLDER SON SAID TO HIM, WE DON'T 

3242
02:08:09,413 --> 02:08:12,449
HAVE A CHOICE.  IT'S FOR THE 

3243
02:08:12,449 --> 02:08:15,652
GREATER GOOD.  RIGHT?  AND SO MY

3244
02:08:15,652 --> 02:08:18,021
HEART AS A MOTHER REALLY BROKE 

3245
02:08:18,021 --> 02:08:19,656
BECAUSE I WAS THINKING ALL THIS 

3246
02:08:19,656 --> 02:08:21,358
TIME I WAS THINKING THAT, YOU 

3247
02:08:21,358 --> 02:08:22,459
KNOW, AND WE HAD SEVERAL 

3248
02:08:22,459 --> 02:08:24,594
DISCUSSIONS ABOUT IT.  WE TALKED

3249
02:08:24,594 --> 02:08:26,830
ABOUT IT BEFORE WE REACHED CARE 

3250
02:08:26,830 --> 02:08:29,700
AND AS A MOM TO HEAR THAT AND 

3251
02:08:29,700 --> 02:08:31,702
I'M GETTING EMOTIONAL JUST 

3252
02:08:31,702 --> 02:08:34,371
THINKING ABOUT IT BUT AS A MOM 

3253
02:08:34,371 --> 02:08:36,173
THINKING ABOUT IT DO WE CLEARLY 

3254
02:08:36,173 --> 02:08:37,574
EXPLAIN TO THE CHILDREN THAT 

3255
02:08:37,574 --> 02:08:39,776
THEY HAVE A CHOICE.  YOU KNOW, 

3256
02:08:39,776 --> 02:08:41,511
BEING THE FIRST IS DRAMATIC.  

3257
02:08:41,511 --> 02:08:44,114
IT'S COOL, IT'S EXCITING.  BUT 

3258
02:08:44,114 --> 02:08:46,516
DO WE HAVE A CHOICE IN THE 

3259
02:08:46,516 --> 02:08:48,018
MATTER?  ARE WE MAKING IT CLEAR 

3260
02:08:48,018 --> 02:08:49,619
TO THE CHILDREN IN LANGUAGE THAT

3261
02:08:49,619 --> 02:08:51,321
IS CLEARLY UNDERSTANDABLE THAT 

3262
02:08:51,321 --> 02:08:53,657
THEY HAVE A CHOICE TO DO THIS?  

3263
02:08:53,657 --> 02:08:54,524
BECAUSE SOMETIMES A CHOICE IS 

3264
02:08:54,524 --> 02:08:56,193
TAKEN OUT OF OUR HANDS BECAUSE 

3265
02:08:56,193 --> 02:08:57,828
THEY KNOW IF THEY DON'T DO THIS 

3266
02:08:57,828 --> 02:09:00,197
THEY DON'T GET TREATMENT.  

3267
02:09:00,197 --> 02:09:02,199
THEY'LL CONTINUE TO SORT OF LIVE

3268
02:09:02,199 --> 02:09:05,368
WITH JANSEN'S IN A VERY 

3269
02:09:05,368 --> 02:09:08,605
DEBILITATING WAY.  BOTH MY KIDS 

3270
02:09:08,605 --> 02:09:09,973
USE WHEELCHAIRS THE FACT THAT 

3271
02:09:09,973 --> 02:09:13,944
THIS IS A VERY IMPORTANT 

3272
02:09:13,944 --> 02:09:18,115
DISCUSSION.  IN THAT HOW DO WE 

3273
02:09:18,115 --> 02:09:19,549
COMMUNICATE WITH THE CHILDREN 

3274
02:09:19,549 --> 02:09:21,284
AND IN WAYS THAT HAVE R 

3275
02:09:21,284 --> 02:09:21,885
INDIVIDUALIZED.  YOU'RE NOT 

3276
02:09:21,885 --> 02:09:22,352
TALKING TO CHILDREN. 

3277
02:09:22,352 --> 02:09:24,921
THEY'RE NOT ALL THE SAME.  EVEN 

3278
02:09:24,921 --> 02:09:25,689
BETWEEN MY TWO KIDS THEY HAVE 

3279
02:09:25,689 --> 02:09:28,592
DIFFERENT APPROACH TO THE TRIAL.

3280
02:09:28,592 --> 02:09:30,660
SO THAT'S SIGNIFICANT TO 

3281
02:09:30,660 --> 02:09:31,428
UNDERSTAND THAT EVERYONE GOING 

3282
02:09:31,428 --> 02:09:32,929
INTO THE TRIAL IS AN INDIVIDUAL.

3283
02:09:32,929 --> 02:09:36,600
THEY HAVE THEIR OWN FEARS, THEIR

3284
02:09:36,600 --> 02:09:38,735
OWN UNDERSTANDING OF THE PROCESS

3285
02:09:38,735 --> 02:09:43,140
AND THEIR OWN FEELINGS OF HOW 

3286
02:09:43,140 --> 02:09:44,174
THEY'RE DEALING WITH IT.  WHICH 

3287
02:09:44,174 --> 02:09:45,942
IS WHY I'M SAYING IT IS TO 

3288
02:09:45,942 --> 02:09:47,344
IMPORTANT TO HAVE A COUNSELOR ON

3289
02:09:47,344 --> 02:09:48,378
BOARD.  WHEN YOU ARE DEALING 

3290
02:09:48,378 --> 02:09:50,213
WITH A CHILDREN, THAT'S SO 

3291
02:09:50,213 --> 02:09:51,715
CRITICAL TO MAKE THEM 

3292
02:09:51,715 --> 02:09:53,283
UNDERSTAND, TO ALLOW THEM TO 

3293
02:09:53,283 --> 02:09:56,119
VOICE THEIR OPINIONS.  SHARE 

3294
02:09:56,119 --> 02:10:00,023
THEIR CONCERNS IN WAYS THAT ARE 

3295
02:10:00,023 --> 02:10:01,992
COGNITIVELY RELEVANT TO THAT 

3296
02:10:01,992 --> 02:10:03,727
COMMUNITY AS WELL AS THE 

3297
02:10:03,727 --> 02:10:05,562
CULTURAL SIGNIFICANCE OF, OR -- 

3298
02:10:05,562 --> 02:10:07,264
WITH THE CULTURAL SENSITIVITY 

3299
02:10:07,264 --> 02:10:10,801
THAT THEY'RE BRINGING TO THAT 

3300
02:10:10,801 --> 02:10:15,605
RESEARCH.  RIGHT?  SO ALL OF 

3301
02:10:15,605 --> 02:10:17,207
THESE BECOME SO IMPORTANT TO THE

3302
02:10:17,207 --> 02:10:18,542
DISCUSSION.  IT'S NOT YEAH, 

3303
02:10:18,542 --> 02:10:20,177
HERE'S YOUR NEXT TEST, NO, WHAT 

3304
02:10:20,177 --> 02:10:21,611
WAS THE DISCUSSION BEFORE THAT? 

3305
02:10:21,611 --> 02:10:23,480
WHAT ARE THE -- IT'S NOT JUST 

3306
02:10:23,480 --> 02:10:24,848
WHAT ARE YOU GOING TO EXPECT TO 

3307
02:10:24,848 --> 02:10:27,017
HAVE TO DO BUT TALK TO THEIR 

3308
02:10:27,017 --> 02:10:28,652
MIND?  TALK TO THEIR HEART?  

3309
02:10:28,652 --> 02:10:30,921
TALK TO THEIR SOUL.  SO I THINK 

3310
02:10:30,921 --> 02:10:32,289
THIS IS SOME OF THE CHALLENGES I

3311
02:10:32,289 --> 02:10:35,292
THINK WE NEED TO BEGIN TO 

3312
02:10:35,292 --> 02:10:35,525
UNPACK. 

3313
02:10:35,525 --> 02:10:37,160
AND, YOU KNOW, I KEEP REFLECTING

3314
02:10:37,160 --> 02:10:38,929
THAT AS A CHILD WHEN I WENT INTO

3315
02:10:38,929 --> 02:10:41,131
THE HOSPITAL, I FELT LIKE I WAS 

3316
02:10:41,131 --> 02:10:44,234
SO NAIVE AND SO DUMB AND 

3317
02:10:44,234 --> 02:10:45,468
CHILDREN TODAY ARE NOT.  THEY 

3318
02:10:45,468 --> 02:10:46,770
ASK QUESTIONS, THEY WANT TO 

3319
02:10:46,770 --> 02:10:50,640
KNOW.  THEY WANT TO BE INVOLVED.

3320
02:10:50,640 --> 02:10:53,243
THEY WANT TO FEEL THAT THEY HAVE

3321
02:10:53,243 --> 02:10:54,778
SOME CONTROL.  YOU KNOW, IF I 

3322
02:10:54,778 --> 02:10:56,746
WAS SEVEN AND THEY TOLD ME TO 

3323
02:10:56,746 --> 02:10:59,249
GET UP ONTO THIS YOU KNOW STUDY 

3324
02:10:59,249 --> 02:11:01,651
TABLE I WOULD HAVE JUST JUMPED 

3325
02:11:01,651 --> 02:11:02,519
UP WITHOUT ANY THOUGHT BUT 

3326
02:11:02,519 --> 02:11:03,453
TODAY'S CHILDREN ARE NOT LIKE 

3327
02:11:03,453 --> 02:11:04,588
THAT AND I THINK WE HAVE TO 

3328
02:11:04,588 --> 02:11:05,989
THINK ABOUT THAT AND THINK ABOUT

3329
02:11:05,989 --> 02:11:08,859
HOW ARE WE CHANGING OUR STUDY 

3330
02:11:08,859 --> 02:11:10,994
ENVIRONMENT TO REFLECT THESE 

3331
02:11:10,994 --> 02:11:11,595
CHANGING NORMS.

3332
02:11:11,595 --> 02:11:13,263
>> GREAT.  NOW NOT TO PUT
YOU ON

3333
02:11:13,263 --> 02:11:15,498
THE SPOT, LIAM AS THE YOUNGEST 

3334
02:11:15,498 --> 02:11:19,002
MEMBER OF OUR PANEL, BUT I'M 

3335
02:11:19,002 --> 02:11:20,303
WONDERING IF YOU HAVE HAD ANY 

3336
02:11:20,303 --> 02:11:22,639
SORT OF THOUGHTS AS NINA'S BEEN 

3337
02:11:22,639 --> 02:11:24,574
TALKING ABOUT, YOU KNOW, WERE 

3338
02:11:24,574 --> 02:11:26,943
THERE OPPORTUNITIES FOR YOU TO 

3339
02:11:26,943 --> 02:11:30,680
TALK WITH FOLKS ABOUT YOUR 

3340
02:11:30,680 --> 02:11:32,449
PARTICIPATION OR DID YOU FEEL 

3341
02:11:32,449 --> 02:11:35,051
SORT OF ABLE TO MAKE A DECISION.

3342
02:11:35,051 --> 02:11:36,720
TELL US A LITTLE MORE ABOUT THAT

3343
02:11:36,720 --> 02:11:38,288
IF YOU DON'T MIND.

3344
02:11:38,288 --> 02:11:39,723
>> YEAH, SO, I MEAN, I
THINK THE

3345
02:11:39,723 --> 02:11:42,292
BEST WAY TO EXPLAIN THAT IS I 

3346
02:11:42,292 --> 02:11:45,328
DID HAVE QUESTIONS LIKE SHE 

3347
02:11:45,328 --> 02:11:50,033
MENTIONED.  BUT IT WAS BEFORE 

3348
02:11:50,033 --> 02:11:51,134
THE CLINICAL TRIAL.  I WAS 

3349
02:11:51,134 --> 02:11:53,169
LOOKING AT ALL MY OPTIONS KIND 

3350
02:11:53,169 --> 02:11:55,071
OF SITUATION.  LIKE THIS -- 

3351
02:11:55,071 --> 02:11:56,306
THERE WAS ANOTHER TRIAL THAT WAS

3352
02:11:56,306 --> 02:11:58,108
KIND OF THE SAME -- IT'S LIKE 

3353
02:11:58,108 --> 02:12:00,176
THE COMPETITIVE MY TRIAL THAT I 

3354
02:12:00,176 --> 02:12:02,879
COULD HAVE DONE.  I COULD HAVE 

3355
02:12:02,879 --> 02:12:06,549
DONE GENE THERAPY OR I COULD 

3356
02:12:06,549 --> 02:12:09,419
HAVE DONE A HYDROCORTISONE 

3357
02:12:09,419 --> 02:12:10,921
RELEASE DRUG.  BASICALLY I HAD 

3358
02:12:10,921 --> 02:12:12,589
E-MAILED SO MANY DOCTORS ABOUT 

3359
02:12:12,589 --> 02:12:14,591
THESE OTHER TRIALS BECAUSE I I 

3360
02:12:14,591 --> 02:12:20,563
WANTED TO MAKE SURE THAT I 

3361
02:12:20,563 --> 02:12:21,164
DISE -- 

3362
02:12:21,164 --> 02:12:22,666
WANTED TO MAKE SURE I WASN'T 

3363
02:12:22,666 --> 02:12:24,601
GETTING A BIASED ANSWER EITHER. 

3364
02:12:24,601 --> 02:12:26,503
I DIDN'T ASK THE TRIAL DOCTORS, 

3365
02:12:26,503 --> 02:12:30,140
AS IN THE PEOPLE DOING THE 

3366
02:12:30,140 --> 02:12:33,743
TRIALS, I WOULD ASK DOCTORS THE 

3367
02:12:33,743 --> 02:12:34,344
ENDOCR

3368
02:12:34,344 --> 02:12:35,378
ENDOCRINOLOGISTS ABOUT THE 

3369
02:12:35,378 --> 02:12:36,713
TRIALS BUT WERE NOT PART OF THE 

3370
02:12:36,713 --> 02:12:38,348
TRIALS.  I E-MAILED A DOCTOR, 

3371
02:12:38,348 --> 02:12:39,883
YOU KNOW, WHAT DO YOU THINK OF 

3372
02:12:39,883 --> 02:12:42,252
THE GENE THERAPY TRIAL?  AND HE 

3373
02:12:42,252 --> 02:12:45,355
SAID, PERSONALLY, I WOULD NOT DO

3374
02:12:45,355 --> 02:12:46,923
IT, I WOULD NOT RECOMMEND IT 

3375
02:12:46,923 --> 02:12:48,191
AND, YOU KNOW, HE'S RIGHT 

3376
02:12:48,191 --> 02:12:49,225
BECAUSE I WOULDN'T SAY HE'S 

3377
02:12:49,225 --> 02:12:52,395
RIGHT BUT TWO YEARS LATER THE 

3378
02:12:52,395 --> 02:12:55,332
GENE THERAPY TRIAL GOT SHUT DOWN

3379
02:12:55,332 --> 02:12:56,533
BECAUSE THE MEDICAL TEAM DECIDED

3380
02:12:56,533 --> 02:12:58,535
THAT THEY DIDN'T WANT TO PURSUE 

3381
02:12:58,535 --> 02:12:59,502
IT ANYMORE THAT THERE WASN'T 

3382
02:12:59,502 --> 02:13:01,671
ENOUGH EVIDENCE OF, YOU KNOW, 

3383
02:13:01,671 --> 02:13:02,772
IMPROVEMENT WITH THE GENE 

3384
02:13:02,772 --> 02:13:04,574
THERAPY SO THERE WAS JUST NO 

3385
02:13:04,574 --> 02:13:07,277
POINT.  AND IF I HAD JOINED THAT

3386
02:13:07,277 --> 02:13:08,411
GENE THERAPY WELL I COULDN'T 

3387
02:13:08,411 --> 02:13:10,447
HAVE JOINED THIS TRIAL WHICH, 

3388
02:13:10,447 --> 02:13:12,349
YOU KNOW, HAS MORE PROMISE 

3389
02:13:12,349 --> 02:13:13,149
CLEARLY BECAUSE NOW IT'S 

3390
02:13:13,149 --> 02:13:15,018
ACTUALLY ABOUT TO BE RELEASED 

3391
02:13:15,018 --> 02:13:16,152
VERSUS THE GENE THERAPY WHICH 

3392
02:13:16,152 --> 02:13:19,756
AGAIN IS SHUT DOWN.  AND, BUT, 

3393
02:13:19,756 --> 02:13:21,324
YOU KNOW, OVERALL I WOULD SAY 

3394
02:13:21,324 --> 02:13:23,059
LIKE WITH MY EXPERIENCE OF 

3395
02:13:23,059 --> 02:13:24,661
PARTICIPATING, ONCE I GOT IN THE

3396
02:13:24,661 --> 02:13:25,829
CLINICAL TRIAL IT WAS PRETTY 

3397
02:13:25,829 --> 02:13:28,598
MUCH, YOU KNOW, NORMAL.  I FELT 

3398
02:13:28,598 --> 02:13:30,433
COMFORTABLE.  THE ONLY PROBLEMS 

3399
02:13:30,433 --> 02:13:32,435
I WOULD SAY WOULD BE THAT AS, 

3400
02:13:32,435 --> 02:13:35,572
LIKE, STUDY TEAM MEMBERS WOULD 

3401
02:13:35,572 --> 02:13:37,173
NEED TO KNOW ABOUT IS ONE, BE A 

3402
02:13:37,173 --> 02:13:40,143
BIT MORE, LIKE, I GUESS CARING 

3403
02:13:40,143 --> 02:13:41,678
IN THE SENSE THAT SOME OF THE 

3404
02:13:41,678 --> 02:13:43,513
PROCEDURES CAN BE EXTREMELY 

3405
02:13:43,513 --> 02:13:47,017
INVASIVE.  AND YOU GUYS, SOME OF

3406
02:13:47,017 --> 02:13:48,284
THEM CAN BE LIKE WHEN DO YOU 

3407
02:13:48,284 --> 02:13:50,787
WANT TO SCHEDULE IT?  I'M LIKE 

3408
02:13:50,787 --> 02:13:51,755
LET ME THINK ABOUT THAT REAL 

3409
02:13:51,755 --> 02:13:52,889
QUICK AND THE OTHER ONE WOULD 

3410
02:13:52,889 --> 02:13:56,092
BE, YOU KNOW, I GUESS IT COMES 

3411
02:13:56,092 --> 02:13:57,060
DOWN TO THE FACT THAT SCHEDULING

3412
02:13:57,060 --> 02:13:59,829
AT THE END OF THE DAY, I GET 

3413
02:13:59,829 --> 02:14:00,897
THAT THE CLINICAL TRIAL PEOPLE 

3414
02:14:00,897 --> 02:14:02,966
ALSO HAVE THEIR OWN SCHEDULES.  

3415
02:14:02,966 --> 02:14:05,068
BUT THERE CAN BE TIMES WHERE IT 

3416
02:14:05,068 --> 02:14:06,503
BE LIKE OH CAN YOU COME IN 

3417
02:14:06,503 --> 02:14:08,304
MONDAY, CAN YOU COME IN TUESDAY 

3418
02:14:08,304 --> 02:14:11,374
BUT I HAD JUST COME IN MONDAY 

3419
02:14:11,374 --> 02:14:13,943
LIKE FIVE TIMES IN A ROW AND I 

3420
02:14:13,943 --> 02:14:15,945
CANNOT MISS ANOTHER MONDAY 

3421
02:14:15,945 --> 02:14:18,114
CLASS.  BUT FOR THEM THAT'S WHAT

3422
02:14:18,114 --> 02:14:19,315
THEIR SCHEDULE WORKS SO IT KIND 

3423
02:14:19,315 --> 02:14:21,184
OF BECAME LIKE A, YOU KNOW, A 

3424
02:14:21,184 --> 02:14:23,720
SITUATION WHERE WE HAD TO FIGURE

3425
02:14:23,720 --> 02:14:25,321
OUT HOW TO BALANCE EACH OTHER'S 

3426
02:14:25,321 --> 02:14:27,123
SCHEDULE, NOT JUST, YOU KNOW, 

3427
02:14:27,123 --> 02:14:28,625
NOT JUST MY SCHEDULE AT THE END 

3428
02:14:28,625 --> 02:14:31,261
OF THE DAY OR THEIR SCHEDULE 

3429
02:14:31,261 --> 02:14:32,462
BECAUSE, IF WE HAVE STUFF WE 

3430
02:14:32,462 --> 02:14:33,897
HAVE STUFF AND WE CAN'T JUST 

3431
02:14:33,897 --> 02:14:36,332
DROP IT ALL.  BUT, YEAH.

3432
02:14:36,332 --> 02:14:40,036
>> GREAT.  THANK YOU.  HOW
ABOUT

3433
02:14:40,036 --> 02:14:41,404
YOU IN TERMS OF YOU SHARING YOUR

3434
02:14:41,404 --> 02:14:43,239
THOUGHTS ABOUT THE STUDY TEAM S 

3435
02:14:43,239 --> 02:14:44,474
THERE ANYTHING YOU HAVEN'T 

3436
02:14:44,474 --> 02:14:47,377
MENTIONED THAT YOU WANT STUDY 

3437
02:14:47,377 --> 02:14:49,345
TEAMS TO KNOW ABOUT YOU OR 

3438
02:14:49,345 --> 02:14:50,480
PARTICIPANTS MORE GENERALLY?

3439
02:14:50,480 --> 02:14:51,448
>> SURE, ABSOLUTELY.  

3440
02:14:51,448 --> 02:14:54,684
I AM GOING TO ECHO KIND OF WHAT 

3441
02:14:54,684 --> 02:14:55,418
NINA WAS SAYING FOR 

3442
02:14:55,418 --> 02:14:56,920
COMMUNICATION AND LIAM FOR 

3443
02:14:56,920 --> 02:14:58,788
CARING I WILL ADD ACCOMMODATING.

3444
02:14:58,788 --> 02:15:00,056
A LITTLE BIT GOES A LONG WAY I 

3445
02:15:00,056 --> 02:15:02,258
CAN GIVE YOU GUYS AN EXAMPLE.  

3446
02:15:02,258 --> 02:15:03,626
EVERY PATIENT IS VERY UNIQUE AND

3447
02:15:03,626 --> 02:15:05,862
FOR ME ONCE MY EYES GOT DILATED 

3448
02:15:05,862 --> 02:15:08,131
MY VISUAL ACUITY WAS VERY 

3449
02:15:08,131 --> 02:15:09,432
MINIMAL AND MY TECHNICIAN I WAS 

3450
02:15:09,432 --> 02:15:13,103
TELLING YOU GUYS ABOUT, HE WAS 

3451
02:15:13,103 --> 02:15:15,271
SO GOOD AT ONCE THOSE EYES WERE 

3452
02:15:15,271 --> 02:15:16,573
GETTING SUPER DIE LATED AND WE 

3453
02:15:16,573 --> 02:15:18,374
WERE GOING TO GO TO ANOTHER 

3454
02:15:18,374 --> 02:15:21,411
TESTING HE WAS SO GREAT AT 

3455
02:15:21,411 --> 02:15:22,479
BECOMING MORE VOCAL AND VERBAL 

3456
02:15:22,479 --> 02:15:23,446
WITH THINGS. 

3457
02:15:23,446 --> 02:15:25,515
AND HE SAID HEY, I'M GOING TO 

3458
02:15:25,515 --> 02:15:27,784
WALK MY HAND RIGHT NOW AND AN 

3459
02:15:27,784 --> 02:15:28,885
ALCOHOL WIPE TO WIPE DOWN THE 

3460
02:15:28,885 --> 02:15:30,787
MACHINE THAT YOU'RE GOING TO BE 

3461
02:15:30,787 --> 02:15:32,489
USING.  THOSE LITTLE SMALL 

3462
02:15:32,489 --> 02:15:34,157
THINGS MADE ME FEEL SO 

3463
02:15:34,157 --> 02:15:35,592
COMFORTABLE AND SAFE BECAUSE I 

3464
02:15:35,592 --> 02:15:37,560
WAS -- I CAN'T SEE, I DON'T KNOW

3465
02:15:37,560 --> 02:15:39,629
WHAT IS GOING ON.  SO I KNOW FOR

3466
02:15:39,629 --> 02:15:41,998
YOU GUYS AS STUDY MEMBERS EVERY 

3467
02:15:41,998 --> 02:15:43,399
PATIENT ROOM THERE'S A LITTLE 

3468
02:15:43,399 --> 02:15:44,534
SMALL CHANGE OR TWEAK I THINK 

3469
02:15:44,534 --> 02:15:46,102
WILL MAKE A HUGE DIFFERENCE FOR 

3470
02:15:46,102 --> 02:15:48,605
YOU GUYS, COMMUNICATION, YES, 

3471
02:15:48,605 --> 02:15:50,507
ABSOLUTELY BUT KIND OF RINGING 

3472
02:15:50,507 --> 02:15:51,741
THAT ACCOMMODATION, EVEN JUST 

3473
02:15:51,741 --> 02:15:53,042
ASKING THE PATIENT HOW CAN I 

3474
02:15:53,042 --> 02:15:53,877
MAKE THIS EXPERIENCE A LITTLE 

3475
02:15:53,877 --> 02:15:55,778
BIT MORE EASIER?  BECAUSE IT IS 

3476
02:15:55,778 --> 02:15:58,681
LONG DAYS AND A LOT OF TIMES I 

3477
02:15:58,681 --> 02:15:59,682
KNOW.  JUST WANT TO GET ALL 

3478
02:15:59,682 --> 02:16:02,619
THOSE TEN TESTS DONE BUT THOSE 

3479
02:16:02,619 --> 02:16:04,220
SMALL LITTLE THINGS MAKE A HUGE 

3480
02:16:04,220 --> 02:16:05,922
DIFFERENCE AND I CAN'T EMPHASIZE

3481
02:16:05,922 --> 02:16:08,858
THAT MORE FOR MAKING THE 

3482
02:16:08,858 --> 02:16:10,059
EXPERIENCE BETTER FOR THE 

3483
02:16:10,059 --> 02:16:10,460
PATIENT.

3484
02:16:10,460 --> 02:16:12,195
>> AND HOW ABOUT YOU,
ELLEN?

3485
02:16:12,195 --> 02:16:14,464
>> I AGREE, EVEN THOUGH
WHEN I 

3486
02:16:14,464 --> 02:16:16,900
GO INTO PHLEBOTOMY, THEY REALLY 

3487
02:16:16,900 --> 02:16:19,068
DIDN'T WANT TO DO ME.  THEY 

3488
02:16:19,068 --> 02:16:19,936
WOULD.  YOU KNOW.  AND THEN 

3489
02:16:19,936 --> 02:16:21,971
THEY'D -- WE'D ALL CELEBRATE 

3490
02:16:21,971 --> 02:16:24,407
WHEN THEY FINALLY GOT A VEIN 

3491
02:16:24,407 --> 02:16:27,243
LIKE OH, YAY, WE GOT ONE.  SO 

3492
02:16:27,243 --> 02:16:30,113
THEY FELT MY ANXIETY THAT, OH, 

3493
02:16:30,113 --> 02:16:30,914
IS THIS PERSON GOING TO BE ABLE 

3494
02:16:30,914 --> 02:16:32,815
TO GET IT SO NOW I ALWAYS HAVE 

3495
02:16:32,815 --> 02:16:34,817
TO ASK FOR THEIR BEST PERSON AND

3496
02:16:34,817 --> 02:16:37,587
A HEATING PAD.  I KNOW WHAT TO 

3497
02:16:37,587 --> 02:16:39,822
DO NOW.  AND THEY KNOW WHAT TO 

3498
02:16:39,822 --> 02:16:41,558
DO.  SO IT'S ALL WORKED OUT 

3499
02:16:41,558 --> 02:16:43,026
BECAUSE AGAIN THEY TREAT YOU AS 

3500
02:16:43,026 --> 02:16:45,061
A PERSON.  YOU KNOW, AND I THINK

3501
02:16:45,061 --> 02:16:46,663
THAT'S WHAT EVERYBODY'S HAD TO 

3502
02:16:46,663 --> 02:16:50,600
SAY, THEY TREAT YOU AS AN EA

3503
02:16:50,600 --> 02:16:53,269
EARN -- PERSON.

3504
02:16:53,269 --> 02:16:55,405
>> ONE MORE QUESTION FROM
ME AND

3505
02:16:55,405 --> 02:16:58,074
THEN WE'LL OPEN IT UP TO THE 

3506
02:16:58,074 --> 02:16:59,542
AUDIENCE AND I ALSO WANT TO 

3507
02:16:59,542 --> 02:17:02,078
WELCOME TONY JONES WHO JOINED 

3508
02:17:02,078 --> 02:17:04,047
US.  SHE'S MOST RECENTLY THE 

3509
02:17:04,047 --> 02:17:06,516
PARTICIPANT ADVOCATE HERE AT THE

3510
02:17:06,516 --> 02:17:08,151
CLINICAL CENTER AND HAS MOVED 

3511
02:17:08,151 --> 02:17:08,918
ONTO A DIFFERENT POSITION BUT 

3512
02:17:08,918 --> 02:17:10,887
WOULD LOVE TO HEAR ANY THOUGHTS 

3513
02:17:10,887 --> 02:17:13,256
YOU MIGHT WANT TO ADD TONY, ONCE

3514
02:17:13,256 --> 02:17:15,325
WE FINISH UP.  SO THE LAST 

3515
02:17:15,325 --> 02:17:16,626
QUESTION I WANTED TO ASK AND 

3516
02:17:16,626 --> 02:17:19,329
THEN START WITH YOU ELLEN ABOUT 

3517
02:17:19,329 --> 02:17:21,731
IF I AM THINKING ABOUT COMING TO

3518
02:17:21,731 --> 02:17:23,633
THE CLINICAL CENTER OR ENROLLING

3519
02:17:23,633 --> 02:17:26,402
IN A CLINICAL TRIAL, WHAT SORT 

3520
02:17:26,402 --> 02:17:28,605
OF ADVICE WOULD YOU HAVE FOR ME 

3521
02:17:28,605 --> 02:17:30,740
IN MAKING SURE THAT I KNOW WHAT 

3522
02:17:30,740 --> 02:17:34,110
I AM DOING OR WHAT TO EXPECT?

3523
02:17:34,110 --> 02:17:36,479
>> I WOULD FIRST WANT TO
KNOW 

3524
02:17:36,479 --> 02:17:38,581
WHY.  WHY ARE YOU INTERESTED IN 

3525
02:17:38,581 --> 02:17:40,850
THIS TRIAL?  AND WHAT ARE YOUR 

3526
02:17:40,850 --> 02:17:43,686
HOPES FOR THE TRIAL?  BECAUSE A 

3527
02:17:43,686 --> 02:17:46,055
HOPE SHOULD NOT BE A CURE.  

3528
02:17:46,055 --> 02:17:47,323
BECAUSE YOU'RE NOT DOING IT FOR 

3529
02:17:47,323 --> 02:17:50,526
A CURE.  THAT'S NOT GOING TO 

3530
02:17:50,526 --> 02:17:52,161
HAPPEN.  USUALLY BUT TO FIND OUT

3531
02:17:52,161 --> 02:17:56,232
MORE PERMANSONALLY FROM YOU AS  

3532
02:17:56,232 --> 02:17:57,934
PERSON WHY IS IT THAT YOU WANT 

3533
02:17:57,934 --> 02:17:59,569
TO DO THIS AND THEN I WOULD OF 

3534
02:17:59,569 --> 02:18:02,305
COURSE TELL YOU WHAT A SUCCESS I

3535
02:18:02,305 --> 02:18:03,706
HAD.  BUT, AND KIND OF THINGS 

3536
02:18:03,706 --> 02:18:07,010
THAT I'VE DONE AND WHAT, YOU 

3537
02:18:07,010 --> 02:18:08,544
KNOW, THERE'S CONSTRUCTION ALL 

3538
02:18:08,544 --> 02:18:10,480
THE TIME.  SO YOU HAVE TO GET 

3539
02:18:10,480 --> 02:18:12,215
AROUND THAT.  FINDING A WAY 

3540
02:18:12,215 --> 02:18:14,083
AROUND.  AND LET THEM KNOW 

3541
02:18:14,083 --> 02:18:16,619
THAT -- AND I DID REFER ANOTHER 

3542
02:18:16,619 --> 02:18:18,454
PERSON THAT WAS COMING FOR A 

3543
02:18:18,454 --> 02:18:20,523
TRIAL AND I SAID I WILL GO WITH 

3544
02:18:20,523 --> 02:18:23,793
YOU.  THE FIRST TIME.  JUST SO 

3545
02:18:23,793 --> 02:18:24,527
YOU CAN SEE WHERE PHLEBOTOMY IS 

3546
02:18:24,527 --> 02:18:26,896
AND HOW TO GET TO THE PLACES AND

3547
02:18:26,896 --> 02:18:28,665
SHE WAS VERY GRATEFUL FOR THAT 

3548
02:18:28,665 --> 02:18:31,634
AND SHE'S STILL PART OF A TRIAL.

3549
02:18:31,634 --> 02:18:31,934
SO....

3550
02:18:31,934 --> 02:18:34,671
>> I REALLY APPRECIATE
WHERE YOU

3551
02:18:34,671 --> 02:18:36,339
STARTED.  RIGHT?  OF, YOU KNOW, 

3552
02:18:36,339 --> 02:18:38,308
WANTING TO KNOW WHERE THEY'RE 

3553
02:18:38,308 --> 02:18:39,342
COMING FROM FIRST.  BEFORE SORT 

3554
02:18:39,342 --> 02:18:43,513
OF SAYING, OH, APPRECIATE THAT.

3555
02:18:43,513 --> 02:18:44,547
>> I WOULD LOVE TO START
WITH 

3556
02:18:44,547 --> 02:18:45,915
JUST ME.  BECAUSE IT'S ALWAYS 

3557
02:18:45,915 --> 02:18:47,250
ABOUT ME.  I WILL GIVE THEM A 

3558
02:18:47,250 --> 02:18:48,618
CHANCE FIRST.

3559
02:18:48,618 --> 02:18:49,786
>> GOOD.  GOOD.

3560
02:18:49,786 --> 02:18:50,887
>> LET'S SEE, I WOULD
PROBABLY 

3561
02:18:50,887 --> 02:18:54,324
SAY THE FIRST THING, DON'T BE 

3562
02:18:54,324 --> 02:18:55,725
SCARED.  I WAS -- IT'S REALLY 

3563
02:18:55,725 --> 02:18:57,927
OVERWHELMING HERE. THERE'S A LOT

3564
02:18:57,927 --> 02:18:59,696
OF INFORMATION THEY GIVE AT YOU 

3565
02:18:59,696 --> 02:19:00,596
AT THE SAME TIME AND JUST BE 

3566
02:19:00,596 --> 02:19:02,565
WILLING TO NAVIGATE WITH THEM I 

3567
02:19:02,565 --> 02:19:04,233
THINK DON'T BE SCARED, TAKE THAT

3568
02:19:04,233 --> 02:19:05,768
FIRST STEP AND I WISH I HAD THIS

3569
02:19:05,768 --> 02:19:08,271
WHEN I FIRST STARTED, HAVING A 

3570
02:19:08,271 --> 02:19:09,539
BUDDY OR SOMEONE WHO HAS BEEN 

3571
02:19:09,539 --> 02:19:11,274
HERE, NOW THE CLINICAL WEBSITE 

3572
02:19:11,274 --> 02:19:12,442
HAS THIS GREAT WEB PAGE OF 

3573
02:19:12,442 --> 02:19:13,876
PATIENTS TALKING ABOUT THEIR 

3574
02:19:13,876 --> 02:19:14,977
EXPERIENCE, REACHING OUT TO THEM

3575
02:19:14,977 --> 02:19:17,113
AND SAYING, HEY, I'M THINKING 

3576
02:19:17,113 --> 02:19:18,681
ABOUT DOING THIS, WHAT IS YOUR 

3577
02:19:18,681 --> 02:19:20,083
EXPERIENCE.  I WISH I HAD THAT. 

3578
02:19:20,083 --> 02:19:22,485
I WAS SO IN THIS BOX AND I WAS 

3579
02:19:22,485 --> 02:19:24,921
LIKE OKAY I GUESS I WILL DO IT. 

3580
02:19:24,921 --> 02:19:26,589
HAVING CREATE A NETWORK WHETHER 

3581
02:19:26,589 --> 02:19:28,725
IT'S IN THE CLINICAL CENTER OR 

3582
02:19:28,725 --> 02:19:29,726
OUTSIDE HAVING THAT SUPPORT 

3583
02:19:29,726 --> 02:19:31,461
SYSTEM BECAUSE IT IS A HUGE 

3584
02:19:31,461 --> 02:19:32,729
DIFFERENCE.  IT IS OVERWHELMING 

3585
02:19:32,729 --> 02:19:33,963
COMING HERE AND I AM SURE YOU 

3586
02:19:33,963 --> 02:19:36,532
GUYS COMING TO THIS AUDITORIUM 

3587
02:19:36,532 --> 02:19:38,735
MIGHT HAVE BEEN HARD.  SO JUST, 

3588
02:19:38,735 --> 02:19:40,603
YEAH, NOT BEING SCARED AND JUST 

3589
02:19:40,603 --> 02:19:41,637
FINDING THAT NETWORK EVEN IF 

3590
02:19:41,637 --> 02:19:42,939
IT'S ONE PERSON OR A BUNCH OF 

3591
02:19:42,939 --> 02:19:44,107
PEOPLE I THINK THAT'S A HUGE 

3592
02:19:44,107 --> 02:19:45,708
THING THAT IS GOING TO HELP THE 

3593
02:19:45,708 --> 02:19:46,609
PATIENT NAVIGATE THIS.

3594
02:19:46,609 --> 02:19:51,848
>> GREAT.  HOW ABOUT YOU,
LIAM?

3595
02:19:51,848 --> 02:19:53,583
>> I WOULD JUST SAY FOR ME
I 

3596
02:19:53,583 --> 02:19:55,818
HAVE A UNIQUE PERSPECTIVE I FEEL

3597
02:19:55,818 --> 02:19:57,787
BUT LOOK AT ALL THE ADVANTAGES 

3598
02:19:57,787 --> 02:20:00,590
OF PARTICIPATING IN RESEARCH, ET

3599
02:20:00,590 --> 02:20:01,424
CETERA.  THAT YOU CAN TAKE 

3600
02:20:01,424 --> 02:20:03,960
ADVANTAGE OF BECAUSE FOR ME, 

3601
02:20:03,960 --> 02:20:05,395
BEFORE JOINING THIS CLINICAL 

3602
02:20:05,395 --> 02:20:07,096
TRIAL I DIDN'T THINK I WAS GOING

3603
02:20:07,096 --> 02:20:09,465
TO BE YOU KNOW ANYTHING MEDICAL 

3604
02:20:09,465 --> 02:20:10,933
RELATED OR HAVE ANY INTEREST IN 

3605
02:20:10,933 --> 02:20:12,402
MEDICAL STUFF AT ALL BUT ONCE I 

3606
02:20:12,402 --> 02:20:14,237
JOINED THE MEDICAL TRIAL, LIKE 

3607
02:20:14,237 --> 02:20:17,940
OUTSIDE OF THE MIEDICAL TRIAL I 

3608
02:20:17,940 --> 02:20:19,509
WAS ABLE TO TAKE ADVANTAGE OF 

3609
02:20:19,509 --> 02:20:20,309
OTHER OPPORTUNITIES BECAUSE I 

3610
02:20:20,309 --> 02:20:21,611
WAS IN THIS MEDICAL TRIAL LIKE 

3611
02:20:21,611 --> 02:20:22,812
FOR INSTANCE I WAS ABLE TO JOIN 

3612
02:20:22,812 --> 02:20:25,381
THE FDA PANEL ON HOW, YOU KNOW, 

3613
02:20:25,381 --> 02:20:27,617
CLINICAL TRIAL INITIATIVES THAT 

3614
02:20:27,617 --> 02:20:28,584
THEIR PARTNERSHIP WITH DUKE.  SO

3615
02:20:28,584 --> 02:20:30,720
I WORK WITH THEM NOW AND, YOU 

3616
02:20:30,720 --> 02:20:32,555
KNOW, AS A COLLEGE STUDENT 

3617
02:20:32,555 --> 02:20:33,756
THAT'S BENEFICIAL FOR ME IN 

3618
02:20:33,756 --> 02:20:35,792
TERMS OF A RESUME KIND OF 

3619
02:20:35,792 --> 02:20:38,060
SITUATION.  AND I ALSO GET TO 

3620
02:20:38,060 --> 02:20:40,596
WORK WITH THE CLINICAL TRIAL 

3621
02:20:40,596 --> 02:20:43,032
COMPANY THAT I'M IN NOW AS AN 

3622
02:20:43,032 --> 02:20:45,968
ADVISOR AS WELL, A PATIENT 

3623
02:20:45,968 --> 02:20:47,170
ADVISOR, BEFORE THEY RELEASE THE

3624
02:20:47,170 --> 02:20:49,338
DRUG SO THEY CAN GET ADVICE ON 

3625
02:20:49,338 --> 02:20:51,908
HOW TO GO ABOUT IT FROM A 

3626
02:20:51,908 --> 02:20:53,009
PATIENT PERSPECTIVE AND OVERALL,

3627
02:20:53,009 --> 02:20:55,611
I MEAN, YOU KNOW, IF I HAD NOT 

3628
02:20:55,611 --> 02:20:57,146
JOINED THE CLINICAL TRIAL I 

3629
02:20:57,146 --> 02:20:58,448
WOULDN'T HAVE HAD THOSE 

3630
02:20:58,448 --> 02:21:00,249
OPPORTUNITIES AND I WOULDN'T 

3631
02:21:00,249 --> 02:21:02,552
HAVE HAD THIS OPPORTUNITY AS 

3632
02:21:02,552 --> 02:21:04,620
WELL.  IT'S DEFINITELY LIKE 

3633
02:21:04,620 --> 02:21:06,622
EXTERNAL OPPORTUNITIES OUT THERE

3634
02:21:06,622 --> 02:21:08,424
THAT YOU WOULDN'T REALLY THINK 

3635
02:21:08,424 --> 02:21:09,725
OF WHEN YOU'RE CONSIDERING 

3636
02:21:09,725 --> 02:21:10,793
PARTICIPATING IN THE RESEARCH 

3637
02:21:10,793 --> 02:21:12,361
BUT LIKE ONCE YOU START GETTING 

3638
02:21:12,361 --> 02:21:15,665
INTO THE RESEARCH AND YOU START 

3639
02:21:15,665 --> 02:21:17,133
BECOMING MORE INVOLVED BECAUSE 

3640
02:21:17,133 --> 02:21:21,337
HERE YOU ARE GETTING TESTED AS A

3641
02:21:21,337 --> 02:21:23,005
PERSON YOU TOOK THAT BIG STEP 

3642
02:21:23,005 --> 02:21:24,607
THAT ISN'T KNOWN ABOUT THAT CAN 

3643
02:21:24,607 --> 02:21:26,542
BE RISKY.  YOU BECOME MORE 

3644
02:21:26,542 --> 02:21:28,377
CARING ABOUT, YOU KNOW, YOUR 

3645
02:21:28,377 --> 02:21:29,612
CONDITION ABOUT THE DRUG AND 

3646
02:21:29,612 --> 02:21:31,447
JUST OVERALL A COMMUNITY THAT 

3647
02:21:31,447 --> 02:21:33,516
YOU'RE INVOLVED IN SO, I MEAN, 

3648
02:21:33,516 --> 02:21:35,485
YEAH, MY BIGGEST ADVICE IS LOOK 

3649
02:21:35,485 --> 02:21:37,353
AT ALL YOUR OPTIONS AND 

3650
02:21:37,353 --> 02:21:38,654
CONSIDER, YOU KNOW, THE 

3651
02:21:38,654 --> 02:21:40,823
POTENTIAL ADVANTAGES OF JOINING,

3652
02:21:40,823 --> 02:21:42,525
YOU KNOW, A CLINICAL TRIAL.

3653
02:21:42,525 --> 02:21:44,360
>> GREAT, THANK YOU AND I
WILL 

3654
02:21:44,360 --> 02:21:46,596
GIVE YOU THE LAST WORD NINA 

3655
02:21:46,596 --> 02:21:47,930
ABOUT WHAT YOU WOULD SHARE IF I 

3656
02:21:47,930 --> 02:21:51,834
WAS THINKING ABOUT ENROLLING?

3657
02:21:51,834 --> 02:21:53,669
>> THANK YOU.  YEAH.  SO
BECAUSE

3658
02:21:53,669 --> 02:21:54,537
I'VE GONE THROUGH THIS 

3659
02:21:54,537 --> 02:21:57,340
EXPERIENCE AND BECAUSE I'M ALSO 

3660
02:21:57,340 --> 02:21:59,642
THE LEAD ON -- THE LEADER IN MY 

3661
02:21:59,642 --> 02:22:02,044
COMMUNITY AND I AM THE DIRECTOR 

3662
02:22:02,044 --> 02:22:04,313
OF OUR FOUNDATION AND I HAVE TO 

3663
02:22:04,313 --> 02:22:07,283
ENCOURAGE OTHERS IN MY COMMUNITY

3664
02:22:07,283 --> 02:22:08,284
TO PARTICIPATE, I REALLY THOUGHT

3665
02:22:08,284 --> 02:22:11,754
LONG AND HARD ABOUT THIS 

3666
02:22:11,754 --> 02:22:14,657
QUESTION.  AND ACTUALLY I 

3667
02:22:14,657 --> 02:22:21,864
DEVELOPED A SORT OF CHEAT SHEET.

3668
02:22:21,864 --> 02:22:23,733
THE FIRST THING I ALWAYS SAY IS 

3669
02:22:23,733 --> 02:22:25,902
DO YOUR RESEARCH AND I WOULD 

3670
02:22:25,902 --> 02:22:26,669
DEFINITELY SHARE INFORMATION 

3671
02:22:26,669 --> 02:22:30,239
ABILITY FAMILIARIZING YOURSELF 

3672
02:22:30,239 --> 02:22:31,507
WITH WHAT IS THE PURPOSE OF THE 

3673
02:22:31,507 --> 02:22:33,142
STUDY, WHAT ARE THE PROCEDURES, 

3674
02:22:33,142 --> 02:22:35,645
NOW THAT WE HAVE THAT CLEARLY 

3675
02:22:35,645 --> 02:22:37,179
DEFINED, HERE IS WHAT THAT LOOKS

3676
02:22:37,179 --> 02:22:39,415
LIKE, WHAT IS THE POTENTIAL 

3677
02:22:39,415 --> 02:22:40,416
RISKS AND BENEFITS OF THIS 

3678
02:22:40,416 --> 02:22:41,951
RESEARCH?  AND ASK QUESTIONS 

3679
02:22:41,951 --> 02:22:44,487
UNTIL YOU FEEL COMFORTABLE WITH 

3680
02:22:44,487 --> 02:22:46,756
THE INFORMATION.  AND IT'S 

3681
02:22:46,756 --> 02:22:47,423
REALLY IMPORTANT TO HAVE THAT 

3682
02:22:47,423 --> 02:22:50,526
SPACE TO ASK THOSE QUESTIONS.  

3683
02:22:50,526 --> 02:22:51,694
COMMUNICATE OPENLY.  TALK TO THE

3684
02:22:51,694 --> 02:22:53,062
RESEARCH TEAM.  DON'T HESITATE 

3685
02:22:53,062 --> 02:22:56,232
TO DISCUSS CONCERNS OR ASK FOR 

3686
02:22:56,232 --> 02:22:58,267
ANY CLARIFICATION.  OPEN 

3687
02:22:58,267 --> 02:23:00,703
COMMUNICATION LIKE I'VE SAID, 

3688
02:23:00,703 --> 02:23:02,672
OVER AND OVER IN THIS DISCUSSION

3689
02:23:02,672 --> 02:23:04,440
IT HELP TO BUILD THAT TRUST THAT

3690
02:23:04,440 --> 02:23:06,709
IS SO IMPORTANT.  CONSIDER YOUR 

3691
02:23:06,709 --> 02:23:07,710
OWN COMFORT LEVEL.  LIKE YOU 

3692
02:23:07,710 --> 02:23:10,546
HAVE TO ASSESS YOUR READINESS.  

3693
02:23:10,546 --> 02:23:12,415
YOU THINK ABOUT WHETHER YOU FEEL

3694
02:23:12,415 --> 02:23:14,684
EMOTIONALLY AND PHYSICALLY 

3695
02:23:14,684 --> 02:23:16,085
PREPARED TO PARTICIPATE.  I 

3696
02:23:16,085 --> 02:23:18,287
MEAN, SOME OF THESE STUDIES, 

3697
02:23:18,287 --> 02:23:20,022
IT'S A LONG HAUL AND IF 

3698
02:23:20,022 --> 02:23:21,490
SOMETHING DOESN'T FEEL RIGHT IF 

3699
02:23:21,490 --> 02:23:23,025
YOU DON'T FEEL COMFORTABLE WITH 

3700
02:23:23,025 --> 02:23:24,527
ONE PERSON ON YOUR STUDY TEAM, 

3701
02:23:24,527 --> 02:23:27,229
IT'S OKAY TO DECLINE OR TO WAIT 

3702
02:23:27,229 --> 02:23:29,265
UNTIL YOU FEEL MORE COMFORTABLE.

3703
02:23:29,265 --> 02:23:31,367
I THINK THAT'S REALLY IMPORTANT.

3704
02:23:31,367 --> 02:23:36,606
I NEVER UNDERSTOOD HOW MUCH 

3705
02:23:36,606 --> 02:23:39,108
OF -- HOW MUCH THIS IS GOING TO 

3706
02:23:39,108 --> 02:23:41,911
TAKE OUT OF ME AND MY COMMUNITY 

3707
02:23:41,911 --> 02:23:42,745
TO BE INVOLVED AND YET KNOW THIS

3708
02:23:42,745 --> 02:23:44,013
IS THE ONLY WAY WE WOULD GET TO 

3709
02:23:44,013 --> 02:23:46,749
A TREATMENT.  IT'S A SIGNIFICANT

3710
02:23:46,749 --> 02:23:47,717
STEP AND SOMETIMES YOU FEEL LIKE

3711
02:23:47,717 --> 02:23:49,852
YOU HAVE TO CHOICES.  AND SO 

3712
02:23:49,852 --> 02:23:52,221
WHEN YOU'RE IN THAT SITUATION, 

3713
02:23:52,221 --> 02:23:54,056
YOU REALLY NEED TO ASSESS ALL OF

3714
02:23:54,056 --> 02:23:56,425
THESE POINTS.  INVOLVE YOUR 

3715
02:23:56,425 --> 02:23:57,793
SUPPORT SYSTEM, ENGAGE WITH YOUR

3716
02:23:57,793 --> 02:24:00,129
FAMILY AND FRIENDS, DISCUSS YOUR

3717
02:24:00,129 --> 02:24:02,164
DECISION WITH YOUR LOVED ONES.  

3718
02:24:02,164 --> 02:24:03,466
YOU KNOW, THEIR SUPPORT CAN BE 

3719
02:24:03,466 --> 02:24:04,600
SO IMPORTANT TO THE WHOLE 

3720
02:24:04,600 --> 02:24:07,803
PROCESS AND HOW YOU NAVIGATE 

3721
02:24:07,803 --> 02:24:09,405
THIS EXPERIENCE.  AND ANOTHER 

3722
02:24:09,405 --> 02:24:11,774
IMPORTANT THING IS TO KNOW YOUR 

3723
02:24:11,774 --> 02:24:14,076
RIGHTS.  UNDERSTAND INFORMED 

3724
02:24:14,076 --> 02:24:14,744
CONSENT.  FAMILIARIZE YOURSELF 

3725
02:24:14,744 --> 02:24:16,612
WITH YOUR RIGHTS AS A 

3726
02:24:16,612 --> 02:24:17,947
PARTICIPANT.  INCLUDING YOUR 

3727
02:24:17,947 --> 02:24:21,117
RIGHT TO WITHDRAW FROM THE STUDY

3728
02:24:21,117 --> 02:24:23,919
WITHOUT ANY ADVERSE, YOU KNOW, 

3729
02:24:23,919 --> 02:24:27,390
EFFECT OR ANY KIND OF PENALTY.  

3730
02:24:27,390 --> 02:24:32,528
YOU KNOW, IN DISEASES, RARE 

3731
02:24:32,528 --> 02:24:33,963
DISEASES, WE HAVE HAD PATIENTS 

3732
02:24:33,963 --> 02:24:35,631
TELL ME WE DON'T WANT TO 

3733
02:24:35,631 --> 02:24:37,667
PARTICIPATE.  RIGHT?  BECAUSE 

3734
02:24:37,667 --> 02:24:39,101
THEY DON'T TRUST THE SYSTEM OR 

3735
02:24:39,101 --> 02:24:40,870
THEY DON'T TRUST.  ESPECIALLY, 

3736
02:24:40,870 --> 02:24:42,438
AND THIS IS SO IMPORTANT TO 

3737
02:24:42,438 --> 02:24:44,440
KNOW, WE HAVE HAD PATIENTS FROM 

3738
02:24:44,440 --> 02:24:45,574
OUTSIDE THE U.S. WHO DID NOT 

3739
02:24:45,574 --> 02:24:46,676
WANT TO PARTICIPATE BECAUSE THEY

3740
02:24:46,676 --> 02:24:50,413
HAVE A VERY NEGATIVE IMPRESSION 

3741
02:24:50,413 --> 02:24:52,081
OF AMERICAN MEDICINE OR THE NIH 

3742
02:24:52,081 --> 02:24:54,250
AND THAT IS IMPORTANT TO KNOW.  

3743
02:24:54,250 --> 02:24:57,153
AND THAT IS IMPORTANT TO COUNTER

3744
02:24:57,153 --> 02:24:59,388
AND TO MAKE OUR COMMUNITY 

3745
02:24:59,388 --> 02:25:00,489
UNDERSTAND SO THE TRANSPARENCY 

3746
02:25:00,489 --> 02:25:03,025
OF WHAT WE'RE DOING IS SO 

3747
02:25:03,025 --> 02:25:06,595
IMPORTANT.  BE AWARE OF TIME 

3748
02:25:06,595 --> 02:25:07,897
COMMITMENTS LIKE PLAN FOR WHAT 

3749
02:25:07,897 --> 02:25:12,301
THESE APPOINTMENTS ARE GOING TO 

3750
02:25:12,301 --> 02:25:14,470
LOOK LIKE.  WE HAVE TO BE REALLY

3751
02:25:14,470 --> 02:25:15,504
REALISTIC ABOUT THE TIME THAT'S 

3752
02:25:15,504 --> 02:25:16,972
REQUIRED FOR THESE VISITS, 

3753
02:25:16,972 --> 02:25:18,307
TESTS, THE FOLLOW UPS AND ALL OF

3754
02:25:18,307 --> 02:25:20,843
THE UNKNOWNS THAT COME WITH IT. 

3755
02:25:20,843 --> 02:25:22,812
SO EXPECT THE UNEXPECTED.  

3756
02:25:22,812 --> 02:25:26,549
RIGHT?  WE HAVE TO STAY FLEXIBLE

3757
02:25:26,549 --> 02:25:29,185
IN DOING THAT.  BE OPEN TO 

3758
02:25:29,185 --> 02:25:33,589
SHARING WHAT'S UNEXPECTED AND 

3759
02:25:33,589 --> 02:25:35,057
THE OUTCOMES THAT COME WITH IT 

3760
02:25:35,057 --> 02:25:36,992
AND BE ABLE TO ADAPT AND TALK TO

3761
02:25:36,992 --> 02:25:38,761
YOUR TEAM AND MANAGE ANY OF THE 

3762
02:25:38,761 --> 02:25:39,528
SURPRISES THAT MIGHT HAPPEN 

3763
02:25:39,528 --> 02:25:42,798
ALONG THIS JOURNEY.  AND IF AT 

3764
02:25:42,798 --> 02:25:45,334
ALL POSSIBLE, IF THERE IS 

3765
02:25:45,334 --> 02:25:47,436
OPPORTUNITY TO CONNECT WITH 

3766
02:25:47,436 --> 02:25:48,504
OTHER PARTICIPANTS I THINK 

3767
02:25:48,504 --> 02:25:49,839
THAT'S IMPORTANT TO SEEK 

3768
02:25:49,839 --> 02:25:50,539
COMMUNITY SUPPORT AND THEN 

3769
02:25:50,539 --> 02:25:54,076
FINALLY I WOULD SAY TRUST YOUR 

3770
02:25:54,076 --> 02:25:56,345
INSTINCTS, RIGHT?  FOLLOW YOUR 

3771
02:25:56,345 --> 02:25:58,314
GUT, ULTIMATELY TRUST YOUR 

3772
02:25:58,314 --> 02:26:05,921
INSTINCTS ABOUT O  WHETHER TO 

3773
02:26:05,921 --> 02:26:06,255
PARTICIPATE. 

3774
02:26:06,255 --> 02:26:07,690
THE REALITY IS IT'S A HARD ROAD 

3775
02:26:07,690 --> 02:26:09,458
TO BE THE FIRST.  AND WE HAVE TO

3776
02:26:09,458 --> 02:26:11,227
BE PREPARED MENTALLY FOR IT. 

3777
02:26:11,227 --> 02:26:13,095
IF IT'S NOT YOUR ROAD IF IT'S 

3778
02:26:13,095 --> 02:26:14,396
NOT SOMETHING YOU FEEL GOOD 

3779
02:26:14,396 --> 02:26:16,532
ABOUT IT'S OKAY TO STEP BACK.  

3780
02:26:16,532 --> 02:26:17,867
SO, YOU KNOW, FINALLY 

3781
02:26:17,867 --> 02:26:20,002
PARTICIPATING IN RESEARCH CAN BE

3782
02:26:20,002 --> 02:26:20,636
ABSOLUTELY MEANINGFUL AND 

3783
02:26:20,636 --> 02:26:22,605
CONTRIBUTE TO SCIENTIFIC 

3784
02:26:22,605 --> 02:26:24,607
KNOWLEDGE.  AND YOU HELP OTHERS.

3785
02:26:24,607 --> 02:26:26,842
IT'S ALTRUISTIC.  IT'S 

3786
02:26:26,842 --> 02:26:28,611
PHENOMENAL.  BUT IT'S ESSENTIAL 

3787
02:26:28,611 --> 02:26:31,647
TO APPROACH THE DECISION REALLY 

3788
02:26:31,647 --> 02:26:32,214
THOUGHTFULLY AND WITH CARE.

3789
02:26:32,214 --> 02:26:36,619
>> GREAT.  WELL, THANK
YOU, ALL,

3790
02:26:36,619 --> 02:26:38,587
I SO APPRECIATE YOUR 

3791
02:26:38,587 --> 02:26:40,156
PARTICIPATING TODAY AND SHARING 

3792
02:26:40,156 --> 02:26:41,190
YOUR STORIES.  I -- SO, THANK 

3793
02:26:41,190 --> 02:26:43,692
YOU VERY, VERY MUCH.  I AM GOING

3794
02:26:43,692 --> 02:26:44,593
TO NOW --

3795
02:26:44,593 --> 02:26:47,463
>> AUDIENCE: (APPLAUSE).

3796
02:26:47,463 --> 02:26:48,764
>> YOU'RE VERY WELCOME.

3797
02:26:48,764 --> 02:26:50,900
>> I'M GOING TO PUT TONY
ON THE 

3798
02:26:50,900 --> 02:26:53,202
SPOT AND SEE IF SHE HAS ANYTHING

3799
02:26:53,202 --> 02:26:54,837
SHE WOULD LIKE TO ADD AS I 

3800
02:26:54,837 --> 02:26:59,008
MENTIONED EARLIER, TONY HAS SORT

3801
02:26:59,008 --> 02:26:59,942
OF THE POPULATION BASED 

3802
02:26:59,942 --> 02:27:00,609
KNOWLEDGE AND PERSPECTIVE ON 

3803
02:27:00,609 --> 02:27:03,212
WHAT IT'S LIKE TO BE A 

3804
02:27:03,212 --> 02:27:04,613
PARTICIPANT AND THEN FOLKS IF 

3805
02:27:04,613 --> 02:27:05,614
YOU HAVE QUESTIONS FEEL FREE TO 

3806
02:27:05,614 --> 02:27:07,216
COME TO THE MICS.

3807
02:27:07,216 --> 02:27:08,584
>> GOOD MORNING, I
APOLOGIZE FOR

3808
02:27:08,584 --> 02:27:11,821
BEING A LITTLE LATE.  BUT I JUST

3809
02:27:11,821 --> 02:27:13,556
HAVE TO SAY FIRST OF ALL HATS 

3810
02:27:13,556 --> 02:27:17,193
OFF TO THE FOUR OF YOU.  YOU 

3811
02:27:17,193 --> 02:27:20,262
KNOW, I'M OVERWHELMED.  I'M NOT 

3812
02:27:20,262 --> 02:27:22,097
SURPRISED.  YOU GUYS ARE 

3813
02:27:22,097 --> 02:27:22,665
PHENOMENAL.  THANK YOU FOR 

3814
02:27:22,665 --> 02:27:23,999
PARTICIPATING AND I TOOK A 

3815
02:27:23,999 --> 02:27:25,701
COUPLE NOTES.  SOME OF THESE 

3816
02:27:25,701 --> 02:27:26,969
THINGS YOU ALL HAVE SAID 

3817
02:27:26,969 --> 02:27:28,604
BEAUTIFULLY AND I CAN'T SAY THEM

3818
02:27:28,604 --> 02:27:31,974
ANY BETTER I DID THE ROLE OF THE

3819
02:27:31,974 --> 02:27:32,775
PATIENT REPRESENTATIVE HERE FOR 

3820
02:27:32,775 --> 02:27:37,146
NINE YEARS AND SO MUCH I LEARNED

3821
02:27:37,146 --> 02:27:40,649
THAT I LIKE TO SHARE TO FOLKS 

3822
02:27:40,649 --> 02:27:41,851
THAT I THINK IT'S HELPFUL TO 

3823
02:27:41,851 --> 02:27:43,452
KEEP IN MIND AND ONE IS WE ASK A

3824
02:27:43,452 --> 02:27:46,121
LOT OF THEM.  IT'S NOT EASY TO 

3825
02:27:46,121 --> 02:27:49,925
BE ON A CLINICAL TRIAL.  AND 

3826
02:27:49,925 --> 02:27:51,927
KEEP THAT IN MIND AS THEY HAVE 

3827
02:27:51,927 --> 02:27:53,495
MENTIONED SO NICELY WE INVITE 

3828
02:27:53,495 --> 02:27:54,763
THEM IN.  WE HAVE SOMETHING WE 

3829
02:27:54,763 --> 02:27:55,764
WANT TO OFFER BUT WE'RE ASKING 

3830
02:27:55,764 --> 02:27:58,667
THEM TO CHANGE THEIR LIVES TO 

3831
02:27:58,667 --> 02:27:59,501
CONTRIBUTE TO SCIENCE.  SO 

3832
02:27:59,501 --> 02:28:00,703
REMEMBER THAT.  THAT WE ARE 

3833
02:28:00,703 --> 02:28:02,271
ASKING A LOT OF THEM.  SOME OF 

3834
02:28:02,271 --> 02:28:04,340
THE THINGS WE ASK OF THEM 

3835
02:28:04,340 --> 02:28:05,774
THEY'RE FINE WITH BUT SOME 

3836
02:28:05,774 --> 02:28:06,442
THINGS ARE CHALLENGING AND SO IF

3837
02:28:06,442 --> 02:28:07,743
WE CAN KEEP THAT IN THE BACKS OF

3838
02:28:07,743 --> 02:28:10,479
OUR MINDS OR IN THE FOREFRONT 

3839
02:28:10,479 --> 02:28:11,914
ACTUALLY AT ALL TIMES THAT WOULD

3840
02:28:11,914 --> 02:28:14,416
BE -- HELP THE RELATIONSHIP.  

3841
02:28:14,416 --> 02:28:15,951
THE POWER OF COMMUNICATION AND 

3842
02:28:15,951 --> 02:28:16,919
THEY'VE TALKED ABOUT THIS SO 

3843
02:28:16,919 --> 02:28:18,721
MUCH.  THIS IDEA OF EXPLAINING 

3844
02:28:18,721 --> 02:28:19,955
THINGS THAT YOU'RE DOING THAT 

3845
02:28:19,955 --> 02:28:21,557
COME SECOND NATURE TO US AS THE 

3846
02:28:21,557 --> 02:28:23,359
PROVIDERS AND THE CLINICIANS.  

3847
02:28:23,359 --> 02:28:25,594
BUT NOT TO THEM.  EVEN THE 

3848
02:28:25,594 --> 02:28:27,963
SIMPLE EXAMPLE AND THE BEAUTIFUL

3849
02:28:27,963 --> 02:28:30,232
EXAMPLE THAT SHOW MA GAVE THAT 

3850
02:28:30,232 --> 02:28:32,468
ONCE SHE COULDN'T SEE TO TELL 

3851
02:28:32,468 --> 02:28:34,436
SOMEONE WHAT YOU'RE DOING.  IT 

3852
02:28:34,436 --> 02:28:37,139
SEEMS SMALL BUT HAS SUCH A HUGE 

3853
02:28:37,139 --> 02:28:38,774
IMPACT AND CREATING AN 

3854
02:28:38,774 --> 02:28:40,109
ENVIRONMENT OF COMFORT FOR 

3855
02:28:40,109 --> 02:28:42,211
PATIENT TO GIVE YOU FEEDBACK. 

3856
02:28:42,211 --> 02:28:44,380
THERE IS STILL A POWER 

3857
02:28:44,380 --> 02:28:45,014
DIFFERENTIAL WHEN YOU ARE THE 

3858
02:28:45,014 --> 02:28:46,949
TEAM AND THEY ARE THE PATIENT.  

3859
02:28:46,949 --> 02:28:48,617
PARTICULARLY BECAUSE PATIENTS, 

3860
02:28:48,617 --> 02:28:49,785
THEY WANT WHAT YOU HAVE TO OFFER

3861
02:28:49,785 --> 02:28:50,953
SO THEY DON'T ALWAYS WANT TO 

3862
02:28:50,953 --> 02:28:52,955
COME FORWARD AND GIVE YOU SOME 

3863
02:28:52,955 --> 02:28:54,123
FEEDBACK THAT MAY INDICATE THAT 

3864
02:28:54,123 --> 02:28:55,658
YOU'RE NOT AS FANTASTIC AS YOU 

3865
02:28:55,658 --> 02:28:57,693
THINK YOU ARE.  BUT IF WE CAN 

3866
02:28:57,693 --> 02:28:59,728
CREATE THE ENVIRONMENT THAT 

3867
02:28:59,728 --> 02:29:03,165
SAYS, IN ORDER FOR US TO GET 

3868
02:29:03,165 --> 02:29:04,833
BETTER WE HAVE TO HEAR FROM YOU 

3869
02:29:04,833 --> 02:29:05,668
BECAUSE YOU HAVE EYES DIFFERENT 

3870
02:29:05,668 --> 02:29:07,536
THAN OURS SO I WOULD ENCOURAGE 

3871
02:29:07,536 --> 02:29:08,304
YOU TO CREATE THAT ENVIRONMENT 

3872
02:29:08,304 --> 02:29:09,805
THAT WE'RE NOT GOING TO GET 

3873
02:29:09,805 --> 02:29:11,273
ANGRY OR RETALIATE IF YOU TELL 

3874
02:29:11,273 --> 02:29:14,043
US WE MESSED UP WE WANT TO KNOW.

3875
02:29:14,043 --> 02:29:15,511
WE WANT INPUT ON HOW TO MAKE THE

3876
02:29:15,511 --> 02:29:17,479
EXPERIENCE BETTER FOR YOU AND 

3877
02:29:17,479 --> 02:29:19,315
FOR FUTURE PARTICIPANTS.  SO, 

3878
02:29:19,315 --> 02:29:20,582
AGAIN, THAT PIECE OF 

3879
02:29:20,582 --> 02:29:22,051
COMMUNICATION.  LISTENING TO THE

3880
02:29:22,051 --> 02:29:24,386
PATIENT.  YOU SAID THAT SO WELL 

3881
02:29:24,386 --> 02:29:26,689
THEY ARE THE EXPERTS.  I'VE BEEN

3882
02:29:26,689 --> 02:29:28,590
A NURSE FOR ONE HUNDRED YEARS.  

3883
02:29:28,590 --> 02:29:29,792
I'VE BEEN AT THE CLINICAL CENTER

3884
02:29:29,792 --> 02:29:31,627
FOR 37 AND I CAN REMEMBER AT THE

3885
02:29:31,627 --> 02:29:33,529
BEDSIDE COMING HERE, EVERYONE 

3886
02:29:33,529 --> 02:29:34,430
DOESN'T HAVE A RARE DISEASE BUT 

3887
02:29:34,430 --> 02:29:35,664
MANY PEOPLE DO AND THEY KNOW IT 

3888
02:29:35,664 --> 02:29:39,568
BETTER THAN YOU KNOW IT.  TRUST 

3889
02:29:39,568 --> 02:29:43,138
WHAT THEY KNOW.  LISTEN TO YOUR 

3890
02:29:43,138 --> 02:29:44,640
PATIENT.  THEY CAN GIVE YOU SO 

3891
02:29:44,640 --> 02:29:45,874
MUCH INFORMATION TO MAKE YOU 

3892
02:29:45,874 --> 02:29:52,114
BETTER PROVIDE IRS ERS.  

3893
02:29:52,114 --> 02:29:54,683
REMEMBER THEY HAVE A LIFE.  LIAM

3894
02:29:54,683 --> 02:29:56,251
YOU SAID.  AS MUCH AS YOU CAN BE

3895
02:29:56,251 --> 02:29:56,652
FLEXIBLE WITH ME. 

3896
02:29:56,652 --> 02:29:58,420
THE BETTER THAT RELATIONSHIP, 

3897
02:29:58,420 --> 02:29:59,822
NOW THERE ARE SOME THINGS THAT 

3898
02:29:59,822 --> 02:30:01,423
YOU HAVE DEADLINES AND HARD 

3899
02:30:01,423 --> 02:30:02,858
STOPS.  THEY GET THAT.  BUT 

3900
02:30:02,858 --> 02:30:05,160
THERE ARE TIMES WHEN YOU CAN BE 

3901
02:30:05,160 --> 02:30:05,861
FLEXIBLE AND SOMETIMES WE 

3902
02:30:05,861 --> 02:30:07,196
FORGET, AND WE DON'T ENGAGE THAT

3903
02:30:07,196 --> 02:30:10,032
CREATIVE PART OF THE PROCESS.  

3904
02:30:10,032 --> 02:30:11,400
THIS IDEA OF PARTNERSHIP.  SO WE

3905
02:30:11,400 --> 02:30:13,602
SAY WE'RE PARTNERS, WE HAVE TO 

3906
02:30:13,602 --> 02:30:15,537
BEHAVE LIKE WE'RE PARTNERS THAT 

3907
02:30:15,537 --> 02:30:17,906
MEANS RESEARCH TEAMS AND THE 

3908
02:30:17,906 --> 02:30:18,741
CLINICAL CENTER BECAUSE THE 

3909
02:30:18,741 --> 02:30:20,042
CLINICAL CENTER'S THE 

3910
02:30:20,042 --> 02:30:21,110
INFRASTRUCTURE.  WE'RE THE ONES 

3911
02:30:21,110 --> 02:30:23,078
HELPING YOU TO GET YOUR STUDY 

3912
02:30:23,078 --> 02:30:24,213
DONE SO TALKING AMONGST EACH 

3913
02:30:24,213 --> 02:30:25,948
OTHER ABOUT HOW YOU CAN MAKE THE

3914
02:30:25,948 --> 02:30:28,217
EXPERIENCE BETTER FOR PATIENTS I

3915
02:30:28,217 --> 02:30:30,386
THINK WE CAN ALWAYS IMPROVE 

3916
02:30:30,386 --> 02:30:33,489
AROUND THAT.  NEEMA MENTIONED 

3917
02:30:33,489 --> 02:30:35,024
THIS IDEA OF FEELING TRAPPED IN 

3918
02:30:35,024 --> 02:30:36,125
THERE BECAUSE THERE'S SOMETHING 

3919
02:30:36,125 --> 02:30:37,993
THAT CAN BE NEGOTIATED AND 

3920
02:30:37,993 --> 02:30:39,728
FIGURED OUT.  I DON'T KNOW BUT I

3921
02:30:39,728 --> 02:30:42,131
AM SAYING THAT OFTENTIMES 

3922
02:30:42,131 --> 02:30:43,632
BECAUSE WE HAVE 18 INSTITUTES 

3923
02:30:43,632 --> 02:30:46,268
RUNNING STUDIES HERE WE BECOME 

3924
02:30:46,268 --> 02:30:49,071
SILOED AND WE DON'T ALWAYS 

3925
02:30:49,071 --> 02:30:50,506
ENGAGE AROUND WHAT WE MIGHT DO 

3926
02:30:50,506 --> 02:30:52,207
TOGETHER.  I WOULD SAY AS STUDY 

3927
02:30:52,207 --> 02:30:54,276
TEAMS BE TALKING TO THE CLINICAL

3928
02:30:54,276 --> 02:30:55,377
CENTER OR LEADERSHIP ABOUT WHAT 

3929
02:30:55,377 --> 02:30:57,513
WE MIGHT DO OR IF YOU IDENTIFY, 

3930
02:30:57,513 --> 02:30:59,448
HM, I WONDER IF WE CAN GET THIS 

3931
02:30:59,448 --> 02:31:01,283
THING, WE MIGHT BE ABLE TO GET 

3932
02:31:01,283 --> 02:31:03,018
IT BUT MAYBE THE CLINICAL CENTER

3933
02:31:03,018 --> 02:31:04,053
HASN'T HEARD ABOUT THAT.  BE 

3934
02:31:04,053 --> 02:31:05,521
WILLING TO SHARE THAT 

3935
02:31:05,521 --> 02:31:06,588
INFORMATION AND THEN THE LAST 

3936
02:31:06,588 --> 02:31:08,157
THING I WOULD JUST SAY IS, 

3937
02:31:08,157 --> 02:31:10,092
ALWAYS THANK THEM FOR THEIR 

3938
02:31:10,092 --> 02:31:10,626
PARTICIPATION.  WHENEVER 

3939
02:31:10,626 --> 02:31:12,094
PATIENTS WILL COME TO ME WITH A 

3940
02:31:12,094 --> 02:31:14,096
CONCERN OR EVEN A COMPLAINT, I 

3941
02:31:14,096 --> 02:31:17,299
TRY TO SAY TO THEM, THANK YOU 

3942
02:31:17,299 --> 02:31:19,234
FOR BEING COURAGEOUS ENOUGH TO 

3943
02:31:19,234 --> 02:31:20,035
GIVE US THE FEEDBACK.  AGAIN, 

3944
02:31:20,035 --> 02:31:22,337
THAT'S THE IDEA OF CREATING THE 

3945
02:31:22,337 --> 02:31:22,971
ENVIRONMENT THAT IT'S OKAY TO 

3946
02:31:22,971 --> 02:31:24,373
TELL US HOW TO GET BETTER SO 

3947
02:31:24,373 --> 02:31:25,941
SAYING TO THEM, THANK YOU FOR 

3948
02:31:25,941 --> 02:31:27,142
TAKING THE TIME BECAUSE WE KNOW 

3949
02:31:27,142 --> 02:31:28,577
YOU'RE NAVIGATING A LOT AND SO 

3950
02:31:28,577 --> 02:31:31,146
TO DO THAT, REALLY TAKES AN 

3951
02:31:31,146 --> 02:31:32,614
EXTRA STEP SO, THANK YOU ALL, 

3952
02:31:32,614 --> 02:31:33,782
AGAIN, FOR YOUR PARTICIPATION 

3953
02:31:33,782 --> 02:31:36,618
AND JUST FOR BEING A PART OF 

3954
02:31:36,618 --> 02:31:42,491
THIS NIH FAMILY AND THAT'S IT.

3955
02:31:42,491 --> 02:31:46,161
>> THANK YOU.  QUESTIONS
HERE, 

3956
02:31:46,161 --> 02:31:47,529
UNFORTUNATELY MY COMPUTER DIED 

3957
02:31:47,529 --> 02:31:49,665
SO I DON'T HAVE ANY QUESTION -- 

3958
02:31:49,665 --> 02:31:51,800
I HAVE ONE QUESTION FROM THE 

3959
02:31:51,800 --> 02:32:00,609
VIDEO THAT I WILL ASK.  AND ALEX

3960
02:32:00,609 --> 02:32:06,048
AND GOING TO MONITOR FOR ME.  GO

3961
02:32:06,048 --> 02:32:07,416
AHEAD, JONATHAN.

3962
02:32:07,416 --> 02:32:09,485
>> AUDIENCE: HI.  OH, THAT
WAS 

3963
02:32:09,485 --> 02:32:11,820
LOUD.  THANKS FOR COMING OUT.  

3964
02:32:11,820 --> 02:32:14,523
THAT WAS REALLY, REALLY 

3965
02:32:14,523 --> 02:32:16,592
INFORMATIVE.  I WAS WONDERING IF

3966
02:32:16,592 --> 02:32:17,659
YOU COULD SAY A LITTLE BIT 

3967
02:32:17,659 --> 02:32:20,229
ABOUT, SO THIS IS FOR ANYONE FOR

3968
02:32:20,229 --> 02:32:21,964
WHOM IT'S RELEVANT IF YOU COULD 

3969
02:32:21,964 --> 02:32:23,899
SAY A LITTLE BIT ABOUT THE 

3970
02:32:23,899 --> 02:32:25,934
EXPERIENCE OF SEEING A DOCTOR 

3971
02:32:25,934 --> 02:32:29,138
AND SORT OF THEM NOT KNOWING 

3972
02:32:29,138 --> 02:32:30,973
WHAT IS GOING ON.  BECAUSE THAT 

3973
02:32:30,973 --> 02:32:33,642
SEEMS LIKE IT WOULD BE, WELL, I 

3974
02:32:33,642 --> 02:32:34,843
IMAGINE IT WOULD BE SCARY.  BUT 

3975
02:32:34,843 --> 02:32:36,211
I'M ALSO JUST CURIOUS, YOU KNOW,

3976
02:32:36,211 --> 02:32:39,615
HOW YOU NAVIGATED THAT.  AND I'M

3977
02:32:39,615 --> 02:32:42,284
ALSO CURIOUS IF YOU HAVE 

3978
02:32:42,284 --> 02:32:44,086
RECOMMENDATIONS FOR DOCTORS 

3979
02:32:44,086 --> 02:32:45,487
ABOUT HOW THEY SHOULD APPROACH 

3980
02:32:45,487 --> 02:32:47,756
THOSE KINDS OF ISSUES.  YOU 

3981
02:32:47,756 --> 02:32:48,891
KNOW, LIKE HOW TACTFUL THEY 

3982
02:32:48,891 --> 02:32:50,559
SHOULD BE OR IF THEY SHOULD JUST

3983
02:32:50,559 --> 02:32:52,594
SORT OF SAY I HAVE NO IDEA 

3984
02:32:52,594 --> 02:32:54,229
WHAT'S GOING ON.  YEAH.  

3985
02:32:54,229 --> 02:32:56,565
HOPEFULLY THOSE QUESTIONS MAKE 

3986
02:32:56,565 --> 02:32:57,099
SENSE.  THANKS.

3987
02:32:57,099 --> 02:32:59,334
>> ANYONE WANT TO TAKE
THAT ON?

3988
02:32:59,334 --> 02:33:01,069
>> YEAH, I WILL.

3989
02:33:01,069 --> 02:33:06,141
>> GO AHEAD, ELLEN.

3990
02:33:06,141 --> 02:33:08,744
>> WHEN THEY FIRST
EXPLAINED THE

3991
02:33:08,744 --> 02:33:11,680
PROTOCOL TO ME IN-PERSON MY 

3992
02:33:11,680 --> 02:33:13,882
DOCTOR WAS VERY HONEST IN 

3993
02:33:13,882 --> 02:33:15,050
SAYING, YOU KNOW, WE'RE NOT 

3994
02:33:15,050 --> 02:33:16,618
SURE.  THIS IS WHAT A CLINICAL 

3995
02:33:16,618 --> 02:33:18,654
TRIAL IS ABOUT.  WE'RE NOT SURE 

3996
02:33:18,654 --> 02:33:21,723
WHAT'S GOING TO HAPPEN.  BUT WE 

3997
02:33:21,723 --> 02:33:24,526
APPRECIATE YOU COMING HERE TO 

3998
02:33:24,526 --> 02:33:26,562
HELP US FIND OUT WILL THIS WORK.

3999
02:33:26,562 --> 02:33:30,265
SO HE WAS RIGHT UP THERE RIGHT 

4000
02:33:30,265 --> 02:33:31,967
AWAY WITH NO, I DON'T KNOW 

4001
02:33:31,967 --> 02:33:33,402
EVERYTHING.  YOU KNOW?  YOU 

4002
02:33:33,402 --> 02:33:34,636
NEVER FEEL GREAT WHEN YOU GO 

4003
02:33:34,636 --> 02:33:37,172
THROUGH A DOCTOR AND THEY SAY, 

4004
02:33:37,172 --> 02:33:38,874
WELL, WE'VE NEVER SEEN THIS 

4005
02:33:38,874 --> 02:33:39,474
BEFORE.  THESE ARE NOT WORDS 

4006
02:33:39,474 --> 02:33:41,710
THAT ARE ENCOURAGING BUT BEING 

4007
02:33:41,710 --> 02:33:43,745
HONEST ABOUT, WELL, YOU KNOW, I 

4008
02:33:43,745 --> 02:33:44,846
DON'T KNOW WHAT TO DO YET BUT 

4009
02:33:44,846 --> 02:33:47,482
WE'RE GOING TO TRY AND FIND OUT 

4010
02:33:47,482 --> 02:33:49,885
TOGETHER.  THAT WAS AN IMPORTANT

4011
02:33:49,885 --> 02:33:52,588
PART FOR ME AND, YOU KNOW, I 

4012
02:33:52,588 --> 02:33:55,424
HAVE DEVELOPED A FRIENDSHIP WITH

4013
02:33:55,424 --> 02:34:00,028
MY DOCTOR AND I SAW HIM OUTSIDE 

4014
02:34:00,028 --> 02:34:01,029
THE CLINICAL CENTER AND HAD 

4015
02:34:01,029 --> 02:34:02,798
LUNCH WITH HIM.  HE BECAME A 

4016
02:34:02,798 --> 02:34:04,633
FRIEND AFTER THE MANY TIMES I 

4017
02:34:04,633 --> 02:34:06,535
CAME HERE TO SEE HIM HE CAME TO 

4018
02:34:06,535 --> 02:34:08,770
SEE ME ONCE IN MY WORLD SO THAT 

4019
02:34:08,770 --> 02:34:11,006
MAKES A DIFFERENCE TOO.

4020
02:34:11,006 --> 02:34:12,641
>> ANYONE ELSE WANT TO
TAKE THAT

4021
02:34:12,641 --> 02:34:12,941
ON?

4022
02:34:12,941 --> 02:34:14,776
>> SURE I WILL TAKE IT ON
TOO.  

4023
02:34:14,776 --> 02:34:16,578
THANKS FOR THAT QUESTION.  I 

4024
02:34:16,578 --> 02:34:19,381
THINK FROM MY CASE WE DON'T 

4025
02:34:19,381 --> 02:34:20,482
NECESSARILY HAVE SOMETHING TO 

4026
02:34:20,482 --> 02:34:21,717
HELP ME OUT AND I THINK THE LAST

4027
02:34:21,717 --> 02:34:25,287
TWO OR THREE YEARS I GOT REALLY 

4028
02:34:25,287 --> 02:34:28,790
FRUSTRATED BECAUSE IT BECAME 

4029
02:34:28,790 --> 02:34:30,659
SCRIPTED HEY, WE HAVEN'T FOUND 

4030
02:34:30,659 --> 02:34:32,361
ANYTHING YET AND THE THING THAT 

4031
02:34:32,361 --> 02:34:36,965
MADE IT DIFFERENT FROM MY 

4032
02:34:36,965 --> 02:34:38,767
PHYSICIAN I HAD THE SPACE TO SAY

4033
02:34:38,767 --> 02:34:39,868
I WANT TO PREVENT IT FROM 

4034
02:34:39,868 --> 02:34:41,770
GETTING WORSE.  I FEEL IT.  IT'S

4035
02:34:41,770 --> 02:34:44,206
GOING DOWNHILL AND FOR HIM 

4036
02:34:44,206 --> 02:34:45,474
GIVING ME THE CHANCE TO 

4037
02:34:45,474 --> 02:34:48,277
COMMUNICATE WAS HUGE.  IT WAS 

4038
02:34:48,277 --> 02:34:49,945
EXTREMELY SCARY FOR ME I NEVER 

4039
02:34:49,945 --> 02:34:51,647
WANT TO HURT PEOPLE'S FEELINGS 

4040
02:34:51,647 --> 02:34:53,081
BUT IT WAS HARD HEARING THE SAME

4041
02:34:53,081 --> 02:34:55,183
THING OVER AND OVER AGAIN EVERY 

4042
02:34:55,183 --> 02:34:57,185
YEAR.  THANKS FOR COMING BUT 

4043
02:34:57,185 --> 02:34:57,853
THERE STILL HASN'T BEEN ANYTHING

4044
02:34:57,853 --> 02:35:01,189
TO HELP YOU OUT YET.  BUT 

4045
02:35:01,189 --> 02:35:01,990
REMINDING ME IN SOMETHING THAT 

4046
02:35:01,990 --> 02:35:03,992
HE DOES ALL THE TIME AND I THINK

4047
02:35:03,992 --> 02:35:05,494
THAT HELPS ME AGAIN SHINE MY 

4048
02:35:05,494 --> 02:35:08,063
HOPE LIGHT IS SAYING, HEY, HAVE 

4049
02:35:08,063 --> 02:35:09,231
YOU HEARD, FOR THIS PARTICULAR 

4050
02:35:09,231 --> 02:35:11,300
EYE PATIENT WE'VE BEEN ABLE TO 

4051
02:35:11,300 --> 02:35:13,135
FIND A STEM CELL RESEARCH THAT 

4052
02:35:13,135 --> 02:35:15,203
IS HELPING THEM AND ONE DAY THIS

4053
02:35:15,203 --> 02:35:16,505
CAN HELP YOU KIND OF MAKING IT 

4054
02:35:16,505 --> 02:35:18,273
LIKE THERE IS OTHER OPTIONS, 

4055
02:35:18,273 --> 02:35:19,174
THERE'S SOMETHING OUT THERE, 

4056
02:35:19,174 --> 02:35:21,143
AGAIN, BEING OPEN AND HONEST AND

4057
02:35:21,143 --> 02:35:22,477
ALLOWING ME TO VENT AND DUMP ON 

4058
02:35:22,477 --> 02:35:24,313
HIM AS WELL WAS I THINK A HUGE 

4059
02:35:24,313 --> 02:35:25,747
THING AND IT MADE ME LIKE, OKAY;

4060
02:35:25,747 --> 02:35:29,084
THIS IS A PROCESS.  IT MIGHT NOT

4061
02:35:29,084 --> 02:35:30,819
HAPPEN OVERNIGHT.  IT MIGHT BE 

4062
02:35:30,819 --> 02:35:33,221
FIVE YEARS OR TEN YEARS FROM NOW

4063
02:35:33,221 --> 02:35:35,924
BUT HE'S BEING HONEST WITH ME IS

4064
02:35:35,924 --> 02:35:37,993
A HUGE, HUGE THING AND THAT'S 

4065
02:35:37,993 --> 02:35:39,628
HARD SOMETIMES OF NOT HAVING AN 

4066
02:35:39,628 --> 02:35:41,063
ANSWER.  I'M VERY FRUSTRATED 

4067
02:35:41,063 --> 02:35:42,698
BECAUSE IT TAKES A LOT OUT OF 

4068
02:35:42,698 --> 02:35:44,199
OUR DAILY LIVES AND WE DO WANT 

4069
02:35:44,199 --> 02:35:47,002
TO BE LIKE THAT, OH, WE FOUND 

4070
02:35:47,002 --> 02:35:47,736
THAT SPECIAL, SPECIAL TOOL TO 

4071
02:35:47,736 --> 02:35:49,805
HELP ME BUT I THINK THAT'S 

4072
02:35:49,805 --> 02:35:50,439
HONEST THAT YOU'RE ASKING THAT 

4073
02:35:50,439 --> 02:35:52,607
BECAUSE A LOT OF TIMES IT'S 

4074
02:35:52,607 --> 02:35:55,210
SCARY TO SAY HEY, I'M REALLY 

4075
02:35:55,210 --> 02:35:56,311
FRUSTRATED BUT, YEAH, THAT'S 

4076
02:35:56,311 --> 02:35:58,547
KIND OF MY SENSE OF BEING OPEN, 

4077
02:35:58,547 --> 02:36:00,482
HONEST AND SAYING, YOU KNOW WHAT

4078
02:36:00,482 --> 02:36:01,717
YOUR CASE MAY NOT BUT THERE'S 

4079
02:36:01,717 --> 02:36:03,452
SOMETHING SIMILAR TO IT THAT IS 

4080
02:36:03,452 --> 02:36:07,089
HOPEFUL AND THERE'S EXCITEMENT 

4081
02:36:07,089 --> 02:36:08,857
FOR THAT PARTICULAR SCIENTIFIC 

4082
02:36:08,857 --> 02:36:11,526
DISCOVERY THAT THEY MADE.  THAT 

4083
02:36:11,526 --> 02:36:11,727
HELPS.

4084
02:36:11,727 --> 02:36:13,795
>> I THINK I CAN ALSO ADD
A 

4085
02:36:13,795 --> 02:36:14,796
LITTLE BIT.  WHEN YOU HAVE A 

4086
02:36:14,796 --> 02:36:17,165
RARE DISEASE YOU COME ACROSS 

4087
02:36:17,165 --> 02:36:18,700
LOTS OF DOCTORS WHO DON'T KNOW 

4088
02:36:18,700 --> 02:36:20,102
AND THAT'S OKAY.  AND SO I 

4089
02:36:20,102 --> 02:36:23,739
APPRECIATE YOUR QUESTION.  I 

4090
02:36:23,739 --> 02:36:24,606
THINK AS MY COLLEAGUES ON THE 

4091
02:36:24,606 --> 02:36:27,509
PANEL HAVE SAID, IT'S OKAY TO 

4092
02:36:27,509 --> 02:36:28,643
ACKNOWLEDGE IF YOU DON'T KNOW SO

4093
02:36:28,643 --> 02:36:32,247
BE HONEST, RIGHT?  AND THE THING

4094
02:36:32,247 --> 02:36:33,915
THAT'S FUNDAMENTAL.  I'VE HAD 

4095
02:36:33,915 --> 02:36:35,584
DOCTORS WHO TOLD ME OH, YEAH, I 

4096
02:36:35,584 --> 02:36:37,586
HAVE SEEN LOTS OF JANSEN'S 

4097
02:36:37,586 --> 02:36:40,422
PATIENTS AND I KNEW HE WAS LYING

4098
02:36:40,422 --> 02:36:44,126
SO I IMMEDIATELY LEAVE THE ROOM.

4099
02:36:44,126 --> 02:36:44,693
SO DON'T UNDERESTIMATE THE 

4100
02:36:44,693 --> 02:36:48,397
PATIENT KNOWS.  AND THAT'S 

4101
02:36:48,397 --> 02:36:49,464
IMPORTANT.  AND THAT THE PATIENT

4102
02:36:49,464 --> 02:36:50,632
CAN TELL THAT YOU'RE LYING 

4103
02:36:50,632 --> 02:36:52,401
BECAUSE WE CAN.  WE -- THIS 

4104
02:36:52,401 --> 02:36:54,202
ISN'T OUR FIRST RODEO, YOU'RE 

4105
02:36:54,202 --> 02:36:55,804
PROBABLY NOT THE FIRST DOCTOR 

4106
02:36:55,804 --> 02:36:57,506
THAT'S LOOKED AT SOMEBODY'S 

4107
02:36:57,506 --> 02:36:59,307
IMAGES AND SAID, YOU KNOW, 

4108
02:36:59,307 --> 02:37:01,610
SOMETHING CRAZY.  SO BE HONEST. 

4109
02:37:01,610 --> 02:37:03,211
YOU KNOW, DOCTORS SHOULD REALLY 

4110
02:37:03,211 --> 02:37:04,613
OPENLY ACKNOWLEDGE THAT YOU 

4111
02:37:04,613 --> 02:37:06,882
DON'T HAVE ALL THE ANSWERS AND 

4112
02:37:06,882 --> 02:37:08,550
THAT'S FINE BECAUSE AS WE JUST 

4113
02:37:08,550 --> 02:37:14,723
HEARD D HONESTY BUILDS TRUST.  

4114
02:37:14,723 --> 02:37:16,224
AND LISTEN ACTIVELY.  YOU HAVE 

4115
02:37:16,224 --> 02:37:18,093
TO LISTEN TO THE PATIENT'S 

4116
02:37:18,093 --> 02:37:19,928
CONCERNS BECAUSE WHEN YOU DO 

4117
02:37:19,928 --> 02:37:21,696
THAT, YOU ARE GETTING INTO THEIR

4118
02:37:21,696 --> 02:37:22,898
SPACE, RIGHT?  YOU ARE ENTERING 

4119
02:37:22,898 --> 02:37:23,865
INTO THAT RELATIONSHIP WITH 

4120
02:37:23,865 --> 02:37:24,566
THEM.  

4121
02:37:24,566 --> 02:37:27,068
IT SHOWS THAT YOU VALUE THE 

4122
02:37:27,068 --> 02:37:28,303
PATIENT'S EXPERIENCE AND ARE 

4123
02:37:28,303 --> 02:37:29,037
COMMITTED TO FINDING A SOLUTION 

4124
02:37:29,037 --> 02:37:30,772
AND I THINK THAT COMMITMENT 

4125
02:37:30,772 --> 02:37:33,542
FINDING ANSWERS IS WHY WE KEEP 

4126
02:37:33,542 --> 02:37:35,710
COMING BACK TO A DOCTOR.  RIGHT?

4127
02:37:35,710 --> 02:37:37,245
THE DOCTOR SHOULD EXPRESS THAT 

4128
02:37:37,245 --> 02:37:39,481
WILLINGNESS TO INVESTIGATE 

4129
02:37:39,481 --> 02:37:42,250
FURTHER.  OR TO -- OR SAY HEY, 

4130
02:37:42,250 --> 02:37:44,085
I'M GOING TO CONSULT WITH 

4131
02:37:44,085 --> 02:37:45,320
SOMEBODY, LOOK AT THE MEDICAL 

4132
02:37:45,320 --> 02:37:47,022
LITERATURE, REFER YOU TO 

4133
02:37:47,022 --> 02:37:47,756
SPECIALISTS IN THE FIELD.  

4134
02:37:47,756 --> 02:37:52,861
THAT'S IMPORTANT BECAUSE THEN IT

4135
02:37:52,861 --> 02:37:54,863
SHOWS YOU ENTERED INTO OUR WORLD

4136
02:37:54,863 --> 02:37:56,331
IF YOU SAY I DON'T KNOW AND STEP

4137
02:37:56,331 --> 02:37:57,799
BACK IT SHOWS THAT YOU DON'T 

4138
02:37:57,799 --> 02:37:59,067
CARE.  WE CAN PICK UP ON THAT 

4139
02:37:59,067 --> 02:38:00,969
INSTANTLY AND THE DOCTORS THAT 

4140
02:38:00,969 --> 02:38:02,304
ENTER INTO RELATIONSHIPS WITH 

4141
02:38:02,304 --> 02:38:04,606
PARENTS AND ENGAGE IN 

4142
02:38:04,606 --> 02:38:07,075
PARTNERSHIPS, THEY ENGAGE IN 

4143
02:38:07,075 --> 02:38:08,143
COLLABORATIVE LEARNING 

4144
02:38:08,143 --> 02:38:12,280
EXPERIENCES.  SO WE ARE THEN A 

4145
02:38:12,280 --> 02:38:13,615
TEAM.  WE BEGIN TO WORK TOGETHER

4146
02:38:13,615 --> 02:38:17,319
TO ACCESS DATABASES, REGISTRIES,

4147
02:38:17,319 --> 02:38:19,855
PATIENT ADVOCACY ORGANIZATIONS 

4148
02:38:19,855 --> 02:38:21,256
AND WE FIND INFORMATION THAT 

4149
02:38:21,256 --> 02:38:22,557
BECOMES VALUABLE AND SUPPORTIVE 

4150
02:38:22,557 --> 02:38:24,593
AND THAT WHOLE IDEA OF 

4151
02:38:24,593 --> 02:38:25,327
MAINTAINING OPEN COMMUNICATION 

4152
02:38:25,327 --> 02:38:27,863
FOLLOW UP, YOU KNOW, WHAT DID --

4153
02:38:27,863 --> 02:38:28,930
FOLLOW UP AND SAY IT, WHAT DID 

4154
02:38:28,930 --> 02:38:30,332
YOU LEARN?  WHAT DID YOU FIND 

4155
02:38:30,332 --> 02:38:34,603
AND HOW CAN WE THEN ENCOURAGE 

4156
02:38:34,603 --> 02:38:36,738
PATIENTS' ENROLLMENT AND EMPOWER

4157
02:38:36,738 --> 02:38:40,909
PATIENTS IN THEIR OWN JOURNEY 

4158
02:38:40,909 --> 02:38:42,811
THIS IS A COLLABORATIVE PROCESS 

4159
02:38:42,811 --> 02:38:44,513
AND THE UNKNOWN IS IMPORTANT 

4160
02:38:44,513 --> 02:38:47,949
BECAUSE WE ARE ON A JOURNEY OF 

4161
02:38:47,949 --> 02:38:50,318
DISCOVERY TOGETHER AND I THINK 

4162
02:38:50,318 --> 02:38:51,586
IN THAT JOURNEY WE ALSO HAVE TO 

4163
02:38:51,586 --> 02:38:52,487
DOCUMENT FINDINGS.  IT'S REALLY 

4164
02:38:52,487 --> 02:38:55,457
IMPORTANT TO SAY, YOU KNOW, KEEP

4165
02:38:55,457 --> 02:38:57,092
DETAILED NOTES OF WHAT WE FOUND 

4166
02:38:57,092 --> 02:38:58,827
THAT DIDN'T WORK.  WHAT NEW 

4167
02:38:58,827 --> 02:39:01,396
FINDINGS CAME ACROSS THAT WE 

4168
02:39:01,396 --> 02:39:02,631
BOTH HAVE BEEN ON TOGETHER AND I

4169
02:39:02,631 --> 02:39:06,535
THINK THAT IS WHAT CREATES A 

4170
02:39:06,535 --> 02:39:08,036
LONG-TERM RELATIONSHIP AND 

4171
02:39:08,036 --> 02:39:10,539
PARTNERSHIP THAT WILL EVENTUALLY

4172
02:39:10,539 --> 02:39:13,909
LEAD TO SOLVING SOME OF THESE 

4173
02:39:13,909 --> 02:39:14,175
MYSTERIES.

4174
02:39:14,175 --> 02:39:15,610
>> GREAT.  THE ONE
QUESTION THAT

4175
02:39:15,610 --> 02:39:17,679
WE HAD FROM THE DISCUSSION BOARD

4176
02:39:17,679 --> 02:39:19,714
WAS FOR, I'M GOING TO DIRECT TO 

4177
02:39:19,714 --> 02:39:21,082
YOU, NINA BECAUSE YOU MENTIONED 

4178
02:39:21,082 --> 02:39:24,653
IT THAT WHEN YOU AND YOUR SONS 

4179
02:39:24,653 --> 02:39:30,225
WERE HERE FOR A WHOLE WEEK THERE

4180
02:39:30,225 --> 02:39:30,926
WERE LIMITATIONS ON YOUR ABILITY

4181
02:39:30,926 --> 02:39:32,594
TO LEAVE THE CAMPUS.  WHAT'S THE

4182
02:39:32,594 --> 02:39:35,163
ANSWER TO THAT?  WHY DID THEY 

4183
02:39:35,163 --> 02:39:39,067
SAY YOU HAVE TO STAY HERE?

4184
02:39:39,067 --> 02:39:40,268
>> I THINK THAT IT'S -- IT
WAS 

4185
02:39:40,268 --> 02:39:42,003
SAFETY.  RIGHT?  I MEAN, I'M 

4186
02:39:42,003 --> 02:39:45,273
PRETTY SURE IT'S SAFETY AND IT 

4187
02:39:45,273 --> 02:39:48,410
WAS SOME OF THESE PREPANDEMIC OR

4188
02:39:48,410 --> 02:39:50,211
THE PANDEMIC RULES THAT JUST 

4189
02:39:50,211 --> 02:39:51,947
DIDN'T HAVE -- THAT DIDN'T 

4190
02:39:51,947 --> 02:39:55,283
CHANGE AND I THINK MISS TONY 

4191
02:39:55,283 --> 02:39:58,119
COULD PROBABLY WEIGH IN HERE.  I

4192
02:39:58,119 --> 02:39:59,321
THINK THERE'S A DISCONNECT HERE 

4193
02:39:59,321 --> 02:40:00,288
BETWEEN THE TWO TEAMS.  THEY 

4194
02:40:00,288 --> 02:40:01,456
HAVE TO TAKE MORE.  WE HAVE TO 

4195
02:40:01,456 --> 02:40:05,727
COME UP WITH CREATIVE SOLUTIONS.

4196
02:40:05,727 --> 02:40:06,628
RIGHT?  MY KIDS WERE NOT 

4197
02:40:06,628 --> 02:40:08,196
STRAPPED TO ANYTHING.  THEY WERE

4198
02:40:08,196 --> 02:40:09,864
NOT PLUGGED IN OR TIED IN.  THEY

4199
02:40:09,864 --> 02:40:11,399
COULD LEAVE.  RIGHT?  AND WE 

4200
02:40:11,399 --> 02:40:13,435
COULD COME BACK IN THE EVENING 

4201
02:40:13,435 --> 02:40:16,571
THEY COULD HAVE GONE OUT.  WE 

4202
02:40:16,571 --> 02:40:18,173
COULD HAVE HAD DINNER OUTSIDE.  

4203
02:40:18,173 --> 02:40:21,409
JUST GETTING OUTSIDE OF THE 

4204
02:40:21,409 --> 02:40:23,211
CENTER WOULD BE VERY WELCOMING 

4205
02:40:23,211 --> 02:40:24,579
AND I KNOW SOMEBODY MENTIONED ON

4206
02:40:24,579 --> 02:40:26,681
THE FLOOR THAT HEY, WE USED TO 

4207
02:40:26,681 --> 02:40:28,583
DO THIS.  BEFORE THE PANDEMIC 

4208
02:40:28,583 --> 02:40:30,719
AND THEN THEY SHUT IT DOWN BUT 

4209
02:40:30,719 --> 02:40:32,587
THEY NEVER REINSTATED.  SO THERE

4210
02:40:32,587 --> 02:40:34,489
WAS A DISCONTRADICT.  WE HAD 

4211
02:40:34,489 --> 02:40:38,893
SOME INFORMATION FROM ONE OF THE

4212
02:40:38,893 --> 02:40:40,962
NURSES THAT YES, IT WAS A 

4213
02:40:40,962 --> 02:40:41,396
POSSIBILITY. 

4214
02:40:41,396 --> 02:40:42,597
THEY DIDN'T KNOW WHAT WAS THE 

4215
02:40:42,597 --> 02:40:44,733
POSSIBILITY AND WE COULDN'T FIND

4216
02:40:44,733 --> 02:40:48,303
SINGLE THAT COULD VETO AND IT I 

4217
02:40:48,303 --> 02:40:51,106
WENT TO THE HEAD HONCHO AND HE 

4218
02:40:51,106 --> 02:40:52,674
SAID NO WAY ARE YOU LEAVING THE 

4219
02:40:52,674 --> 02:40:54,309
CENTER.  I'M ALSO ON THE 

4220
02:40:54,309 --> 02:40:55,877
ADVISORY BOARD HERE AND THIS IS 

4221
02:40:55,877 --> 02:40:57,245
IMPORTANT.  

4222
02:40:57,245 --> 02:41:00,749
I THINK THAT KIDS NEED TO BE 

4223
02:41:00,749 --> 02:41:04,452
ABLE TO LEAVE.  THAT THEY FEEL 

4224
02:41:04,452 --> 02:41:06,488
TRAPPED THERE AND WE HAVE TO 

4225
02:41:06,488 --> 02:41:08,390
FIND A WAY TO DO THAT.  WHETHER 

4226
02:41:08,390 --> 02:41:09,324
IT'S A DAY PASS THEY SAID 

4227
02:41:09,324 --> 02:41:10,492
WHETHER WE WERE AT THE HOUSE WE 

4228
02:41:10,492 --> 02:41:12,293
COULD DO THAT BUT WE WEREN'T, WE

4229
02:41:12,293 --> 02:41:14,262
WERE -- BECAUSE I HAD TWO KIDS 

4230
02:41:14,262 --> 02:41:17,599
AND THEY WERE BOTH IN DIFFERENT 

4231
02:41:17,599 --> 02:41:19,601
ROOMS, THAT IT WAS IMPOSSIBLE 

4232
02:41:19,601 --> 02:41:21,002
FOR THEM TO LEAVE AND I'M NOT 

4233
02:41:21,002 --> 02:41:25,607
SURE WHAT THAT MEANS BY THE WORD

4234
02:41:25,607 --> 02:41:27,942
IMPOSSIBLE, IN OUR WORLD, IS 

4235
02:41:27,942 --> 02:41:29,344
MEANT TO BE MADE INTO POSSIBLE, 

4236
02:41:29,344 --> 02:41:32,681
RIGHT?  BECAUSE THAT'S THE LIVES

4237
02:41:32,681 --> 02:41:36,584
WE LIVE, SO THERE'S GOT TO BE 

4238
02:41:36,584 --> 02:41:38,353
CREATIVE WAYS TO DO THAT.  AND 

4239
02:41:38,353 --> 02:41:39,454
I'M PRETTY SURE WE CAN DO THAT. 

4240
02:41:39,454 --> 02:41:40,955
IT'S ABOUT HOW TO DO IT SAFELY 

4241
02:41:40,955 --> 02:41:42,290
AND MAKE SURE THAT NOBODY ELSE 

4242
02:41:42,290 --> 02:41:46,728
IS HARMED IN WE DO SO BUT IT HAS

4243
02:41:46,728 --> 02:41:48,430
TO HAPPEN.

4244
02:41:48,430 --> 02:41:50,732
>> TONY'S GOING TO GIVE US

4245
02:41:50,732 --> 02:41:52,400
FEEDBACK ON THAT QUESTION.

4246
02:41:52,400 --> 02:41:53,902
>> I THINK THIS IS ONE OF
THOSE 

4247
02:41:53,902 --> 02:41:55,403
EXAMPLE WHERE IS THE RULES AND 

4248
02:41:55,403 --> 02:42:00,108
REGULATIONS CAN BUMP UP AGAINST 

4249
02:42:00,108 --> 02:42:00,442
THE DESIRES. 

4250
02:42:00,442 --> 02:42:01,876
AND AS POINTED OUT ABSOLUTELY 

4251
02:42:01,876 --> 02:42:04,846
THE PANDEMIC RESTRICTIONS WERE A

4252
02:42:04,846 --> 02:42:08,850
HUGE PART OF THE INABILITY TO 

4253
02:42:08,850 --> 02:42:12,754
ALLOW A PAS WHICH IS SOMETHING 

4254
02:42:12,754 --> 02:42:14,923
THAT USED TO HAPPEN IN THE 

4255
02:42:14,923 --> 02:42:16,024
CLINIC AND THAT THEY DON'T WANT 

4256
02:42:16,024 --> 02:42:17,625
TO REENGAGE.  SO THAT'S ONE 

4257
02:42:17,625 --> 02:42:19,027
PIECE WHERE YOU'VE GOT A RULE 

4258
02:42:19,027 --> 02:42:20,495
AND YOU'VE GOT TO TRY TO FIGURE 

4259
02:42:20,495 --> 02:42:21,362
OUT HOW TO NAVIGATE. 

4260
02:42:21,362 --> 02:42:22,764
AND SOMETIMES IT'S NOT THE 

4261
02:42:22,764 --> 02:42:24,265
ANSWER WE WANT.  THAT DOES 

4262
02:42:24,265 --> 02:42:26,401
HAPPEN.  ALTHOUGH I DO THINK 

4263
02:42:26,401 --> 02:42:29,170
THAT IDEA OF HAVING 

4264
02:42:29,170 --> 02:42:30,538
CONVERSATIONS BETWEEN TEAMS AND 

4265
02:42:30,538 --> 02:42:31,372
CLINICAL CENTER SO YOU CAN START

4266
02:42:31,372 --> 02:42:33,341
THINKING ABOUT AND PLANNING 

4267
02:42:33,341 --> 02:42:34,609
AHEAD.  HOW DO YOU -- MAYBE YOU 

4268
02:42:34,609 --> 02:42:36,311
CAN DO SOMETHING NUANCED FOR A 

4269
02:42:36,311 --> 02:42:38,446
CHILD OR A CERTAIN POPULATION.  

4270
02:42:38,446 --> 02:42:40,582
WHERE YOU'RE NOT BREAKING THE 

4271
02:42:40,582 --> 02:42:42,117
ENTIRE RULE OF MAINTAINING THE 

4272
02:42:42,117 --> 02:42:44,085
SAFETY BUT WHEN YOU COME UP ON 

4273
02:42:44,085 --> 02:42:45,653
IT IN THE MOMENT AND YOU DON'T 

4274
02:42:45,653 --> 02:42:47,155
HAVE A PLAN THERE'S VERY LITTLE 

4275
02:42:47,155 --> 02:42:48,256
YOU CAN DO BECAUSE THEN EVERYONE

4276
02:42:48,256 --> 02:42:53,561
SORT OF BRISTLES AND GET XOOEXCD

4277
02:42:53,561 --> 02:42:54,696
AND NERVOUS ABOUT IT AND WE 

4278
02:42:54,696 --> 02:42:56,231
THINK PROACTIVELY HOW DO WE 

4279
02:42:56,231 --> 02:42:57,732
THINK ABOUT THIS NEXT YEAR OR 

4280
02:42:57,732 --> 02:43:00,368
THE NEXT PATIENT THEN WE MIGHT 

4281
02:43:00,368 --> 02:43:02,470
COME UP WITH SOME CREATIVE 

4282
02:43:02,470 --> 02:43:02,737
SOLUTIONS.

4283
02:43:02,737 --> 02:43:04,272
>> THE PATIENT, SO I THINK
I 

4284
02:43:04,272 --> 02:43:06,174
SAID THIS EARLIER, OUR GUESTS 

4285
02:43:06,174 --> 02:43:09,978
TODAY ARE FROM THE PATIENT 

4286
02:43:09,978 --> 02:43:11,146
ADVISORY GROUP FROM THE CENTER 

4287
02:43:11,146 --> 02:43:12,213
HERE.  I HAVE NOW DOUBT THEY'RE 

4288
02:43:12,213 --> 02:43:15,049
GOING TO PUT THIS ON THE AGENDA 

4289
02:43:15,049 --> 02:43:17,152
TO EXPLORE FURTHER.  SO I JUST 

4290
02:43:17,152 --> 02:43:19,120
WANT TO THANK ALL OF YOU, AGAIN,

4291
02:43:19,120 --> 02:43:21,990
SO MUCH, FOR THE TIME AND EFFORT

4292
02:43:21,990 --> 02:43:26,327
AND INCONVENIENCE OF NAVIGATING 

4293
02:43:26,327 --> 02:43:28,596
THROUGH THE WELCOME CENTER HERE 

4294
02:43:28,596 --> 02:43:31,699
ON CAMPUS.  AND REALLY 

4295
02:43:31,699 --> 02:43:32,333
APPRECIATE YOUR PARTICIPATION 

4296
02:43:32,333 --> 02:43:35,336
AND SHARING ALL OF YOUR THOUGHTS

4297
02:43:35,336 --> 02:43:36,805
AND COMMENTS.

4298
02:43:36,805 --> 02:43:39,140
>> THANK YOU.

4299
02:43:39,140 --> 02:43:42,277
>> THANK YOU FOR ALL YOU
DON'T 

4300
02:43:42,277 --> 02:43:44,579
WE WOULDN'T BE HERE WITHOUT ANY 

4301
02:43:44,579 --> 02:43:45,346
OF YOU.

4302
02:43:45,346 --> 02:43:47,916
>> THANKS, EVERYBODY, FOR 

4303
02:43:47,916 --> 02:43:49,083
JOINING US TODAY.  NEXT WEEK IS 

4304
02:43:49,083 --> 02:43:51,119
INTERNATIONAL DAY SO WE'RE GOING

4305
02:43:51,119 --> 02:43:52,787
TO HAVE ROBERT STEELE WHO IS 

4306
02:43:52,787 --> 02:43:54,989
FROM OUR DEPARTMENT AND THEN TWO

4307
02:43:54,989 --> 02:43:57,192
GUESTS, JOE M WHO USED TO BE IN 

4308
02:43:57,192 --> 02:43:59,327
OUR DEPARTMENT BUT HAS FLED TO 

4309
02:43:59,327 --> 02:44:02,530
SCOTLAND AND THEN DIR KUS WHO IS

4310
02:44:02,530 --> 02:44:04,599
JOINING US FROM KENYA.  NEXT 

4311
02:44:04,599 --> 02:44:06,234
WEEK, SAME TIME, SAME PLACE AND 

4312
02:44:06,234 --> 02:44:07,669
THAT'S OUR LAST SESSION. 

4313
02:44:07,669 --> 02:44:09,337
I'M VERY SAD ABOUT THAT.  HOPE 

4314
02:44:09,337 --> 02:44:19,714
TO SEE YOU ALL THERE.