>> GOOD MORNING, EVERYONE.
WELCOME.
THANK YOU FOR JOINING US FOR
THIS SECOND MEETING ON NATIONAL
COMMISSION ON LYMPHATIC
DISEASES.
IT'S A HYBRID MEETING, MAJORITY
OF MEMBERS JOINING US IN
BETHESDA, MARYLAND.
WE WELCOME EVERYONE JOINING
THROUGH THE NIH VIDEOCAST AS
WELL.
I'M SELEN CATANIA, A PROGRAM
CENTER AND LIAISON BETWEEN
LEADERSHIP, REPRESENTING A LARGE
NHLBI SUPPORT GROUP FOR THE WORK
OF THIS COMMISSION.
I'M GOING TO MAKE A FEW
ADMINISTRATIVE ANNOUNCEMENTS
BEFORE WE GET STARTED.
I WANT TO WELCOME PUBLIC
VISITORS AND STAFF, WE'RE
LOOKING FORWARD TO YOUR
FEEDBACK.
I .
LISTENERS ON THE VIDEOCAST CAN
USE THE "LIVE FEEDBACK" BUTTON,
YOUR QUESTIONS AND FEEDBACK WILL
BE RECORDED AND TAKEN INTO THE
CONSIDERATION.
I'M SORRY FOR THE BACKGROUND
NOISE.
TODAY, THE MEETING IS BEING
WEBCAST AND RECORDED, VIDEO WILL
BE ARCHIVED AND WILL BE
AVAILABLE FOR THE PUBLIC AND OUR
NIH COLLEAGUES FOR AN INDEFINITE
AMOUNT OF TIME.
I'M GOING TO GIVE A BRIEF
OVERVIEW OF THE AGENDA, IT WILL
START BY ME REITERATING THE
CHARGE, THEN DR. STANLEY ROCKSON
WITH A BRIEF WELCOME MESSAGE AND
LENORE A JOHNSONS ANNOUNCEMENT.
STEPHANIE DREYER WILL PRESENT
WORK, FOLLOWED BY ALL SIX
COMMITTEES PRESENTING PLANNED
REPORTS.
THIS WILL END OUR OPEN SESSION.
WITHOUT FURTHER DELAY LET'S GET
STARTED.
THE FOLLOWING CHARGE THAT WILL
BE ON THE SCREEN RIGHT NOW WAS
UNANIMOUSLY ACCEPTED IN THE
KICKOFF MEETING ON DECEMBER 11,
2023, YOU CAN SEE ALL THE
DETAILS BUT BRIEFLY NCLD IS
TRANSPARENT, INCLUSIVE AND
ACCESSIBLE TO GATHER INPUT FROM
A WIDE AND DIVERSE SECTOR OF
STAKEHOLDERS TO IDENTIFY GAPS
AND CHALLENGES IN THE FIELD AND
PROVIDE ACTIONABLE PROGRESS
UPDATES AND FINAL REPORT TO THE
NATIONAL HEART LUNG BLOOD
ADVISORY COUNCIL REFLECTING
PERSPECTIVES OF PEOPLE WITH
LYMPHATIC DISEASES.
WITH THAT, IT'S MY GREAT
PLEASURE TO INTRODUCE DR.
STANLEY ROCKSON, ONE OF THE
CO-CHAIRS.
>> SELEN, THANK YOU VERY MUCH.
IT IS A PRIVILEGE TO BE ABLE TO
WELCOME ALL OF OUR
CO-COMMISSIONERS AS WELL AS THE
AUDITORS WHO ARE PARTICIPATING
IN THIS VERY IMPORTANT MEETING
THROUGH THE VIDEOCAST.
WE ARE DELIGHTED TO BE AT THIS
VERY HISTORIC AND GROUNDBREAKING
MOMENT FOR THE PROBLEM OF
LYMPHATIC DISEASE.
I'M QUITE PRIVILEGED TO BE ABLE
TO WELCOME ALL OF YOU.
I WANT TO SAY JUST A WORD OF
THANKS TO SELEN CATANIA AND ELSA
RIVERA WHO WORKED FROM US WITHIN
NHLBI AND TO MY CO-CHAIR,
STEPHANIE DREYER, WHO THIS GROUP
OF INDIVIDUALS HAS WORKED VERY
HARD BEHIND THE SCENES TO TRY
MAKE THIS EVENT HAPPEN TODAY AND
TO CARRY THE WORK FORWARD, I
ALSO WANT TO VERY MUCH
ACKNOWLEDGE AND THANK THE
ASSISTANCE AND COOPATION OF
SERENA GALLIS.
WE'RE GOING TO MOVE TO THE
CONTENT, IT IS MY GREAT PLEASURE
TO INTRODUCE DR. LENORA JOHNSON,
DIRECTOR OF OFFICE SCIENCE
POLICY, EDUCATION AND
COMMUNICATIONS OF NHLBI WHO WILL
TALK ABOUT THE PROCESS OF AN
ANNOUNCEMENT AND PUBLICATION OF
RFI.
>> I'D LIKE TO START BY SAYING
HOW EXCITED IT IS TO BE AROUND
HERE AND AROUND THE TABLE WITH
INCREDIBLE PEOPLE.
I JUST WANT TO GIVE A NOD TO
THOSE THAT WERE INSTRUMENTAL IN
BRINGING US TOGETHER TODAY.
A NUMBER OF ADVOCATES AND
SCIENTISTS AND RESEARCHERS HAVE
DONE A LOT OF HARD WORK TO PUT A
GREAT DEAL OF EMPHASIS ON
LYMPHATIC DISEASES AND DESERVE
TO BE APPLAUDED FOR THOSE
EFFORTS.
PARTICULAR SHOUT-OUT TO LEARN,
AT THE FOREFRONT OF ADVOCATING,
MANY OF OUR COMMISSIONERS ARE
INVOLVED IN THE ORGANIZATION AS
WELL AS A NUMBER OF OTHER
ORGANIZATIONS.
I WANT TO THANK THE
COMMISSIONERS, PROBABLY THE
FIRST TIME IN MY CAREER THAT
I'VE EVER TRIED TO ASSEMBLE A
GROUP AND EVERYONE SAID YES.
100% OF THE PERSONS WE REACHED
OUT TO SAID YES.
AND YOU ALL ARE REPRESENTATIVE
OF QUITE A NOTED COHORT GROUP OF
INDIVIDUALS REPRESENTING
DIFFERENT FACETS OF RESEARCH,
DIFFERENT AREAS OF SCIENCES AND
LIVED EXPERIENCES, THAT WAS THE
DEMAND OF OUR DIRECTOR TO BE AS
DIVERSE AND INCLUSIVE AS YOU
COULD SUCH THAT WE GARNERED
THROUGH THE DIALOGUE OF THE
COMMISSION AS MUCH DIFFERENT
PERSPECTIVES AS WE COULD AND I
WANT TO THANK YOU FOR SAYING YES
AND BEING HERE TODAY.
I ALSO WANT TO THANK MY
COLLEAGUES IN DCVS WHO STEPPED
IN TO LEAD AND HAVE ALWAYS
STEPPED IN TO LEAD IN THIS AREA
OF RESEARCH, AND SELEN FOR
SERVING AS EXECUTIVE SECRETARY.
AND THE GROUP OF RESEARCHERS,
PHENOMENAL, AND STAFF ACROSS THE
NIH HELPED IN THE TNLCC THAT
HAVE BEEN WORKING FOR YEARS AND
HAVE DONE A NUMBER OF
ADVANCEMENTS IN THIS AREA AND
WHO -- WHETHER YOU SEE THEM OR
NOT, YOU SHOULD BE COMFORTED IN
KNOWING THEY ARE ALWAYS ON THE
FOREFRONT OF PUSHING THE AGENDA.
WITH THAT I WANT TO ANNOUNCE
THAT THE TEAM HAS DECIDED THE
SECOND BULLET IN THE CHARGE
STATEMENT WAS REACH FAR AND WIDE
BASICALLY, FIND AS MUCH, LISTEN
AS MUCH, HEAR AND GATHER AS MUCH
INPUT AS YOU CAN.
SO THE COMMISSION WILL KICK OFF
THAT REACH, IF YOU WILL, WITH
THE REQUEST FOR INFORMATION,
REQUEST FOR INFORMATION IS A
STANDARD TYPE OF PROCESS THAT
THE FEDERAL GOVERNMENT USES.
WE HOPE TO HAVE THAT REQUEST OUT
IN THE FIELD IN THE NEXT COUPLE
WEEKS.
IT WILL REMAIN ACTIVE IN THE
FIELD FOR 30 DAYS, AND WE'RE
GOING TO DEPEND ON YOU TO PUSH
IT AND PROMOTE IT AND ENCOURAGE
RESPONSES TO IT BUT WE HOPE THAT
WILL STIMULATE ONGOING EFFORTS
TAKEN BY THE COMMISSION TO GET
ADDITIONAL -- TO DIG DEEPER AND
HEAR MORE AND WHAT COMES ON THE
FIRST PASS.
THANK YOU FOR BEING HERE AND
AGAIN I'M EXCITED.
>> I HAVE TO GET USED TO THE
MICROPHONE.
THANK YOU.
WE'RE GOING TO PASS IT TO THE
NCLD CO-CHAIR, STEPHANIE DREYER.
>> WE'RE ABOUT TO MOVE INTO A
SHARING SESSION TO EXPLORE THE
WORK ACROSS THE COMMISSION.
A COUPLE THINGS BEFORE WE GET
THERE, MORE CONTEXT FOR THOSE
OBSERVING, OUR COMMISSION
DECIDED ON SIX KEY THEMES TO
HELP FOCUS THE WORK AND THE
FOLKS IN THIS ROOM AND JOINING
ONLINE HAVE BEEN HARD AT WORK
DETERMINING WHAT THAT COMMITTEE
SHOULD BE DOING OVER THE NEXT
FEW MONTHS.
SO WE'RE GOING TO HEAR A LOT
ABOUT THAT TODAY.
AS WE DO, A FEW REMINDERS FOR
THE COMMISSIONERS.
IF WE CAN MAYBE MOVETO THE NEXT
SLIDE.
AS YOU LISTEN TO THE SHARING
SESSIONS YOU'RE NOW GOING TO
HAVE EXPOSURE TO SOME OF THE
WORK MAYBE YOU HAVEN'T BEEN ABLE
TO BE PRIVY TO OVER THE LAST FEW
WEEKS AND MONTHS.
AND SO MY ASK OF YOU AS YOU
LISTSEN TO THESE REPORTS IS
THINK ABOUT WHAT ARE THEY DOING
THAT YOU THINK IS REALLY
WORKING, AND WE'LL ASK FOR YOUR
COMMENTS ON THAT.
WHERE COULD THEY MAKE THEIR
PLANS EVEN STRONGER SO THIS IS
WHERE THE BENEFIT OF US ALL
BEING TOGETHER CAN REALLY
BOLSTER THE WORK.
AND LAST, WHAT CONNECTIONS DOES
THIS COMMITTEE'S WORK HAVE TO MY
OWN COMMITTEE'S WORK?
SO, AS STAN AND I WERE ABLE TO
LOOK OVER THE WORK, WE SAW A
NUMBER OF CONNECTIONS AND WE
WANT YOU ALL TO SEE THOSE TOO SO
YOU CAN HELP EACH OTHER DO THE
WORK, MAKE IT STRONGER, AND FIND
SOME SYNERGIES.
DOES THAT SOUND GOOD?
OKAY.
SO, I HOPE THAT YOU'RE LISTENING
AND PREPARED TO GIVE FEEDBACK
THERE.
AS A REMINDER, WE HAVE SIX
COMMITTEES, SO IF WE MOVE TO THE
NEXT SLIDE WE CAN SEE THE SIX
COMMITTEES.
MAYBE.
HOPEFULLY WE CAN MOVE TO THE
NEXT SLIDE.
THERE WE GO.
ALL RIGHT.
WE HAVE FOLK FOCUSED ON
SCIENTIFIC ADVANCEMENTS,
EDUCATIONAL IMPERATIVES,
MEASURABLE RESULTS, PATIENT
TOOLS, THIRD PARTY COVERAGE,
COMMUNITY GROWTH.
THAT'S ALSO THE ORDER IN WHICH
WE'LL SEE THE COMMITTEES PRESENT
THEIR WORK.
WE WANTED TO GIVE YOU A PREVIEW
OF THE COMMON THEMES AND
CONNECTIONS IN RECEIVING YOUR
REPORTS.
NEXT SLIDE.
YOU'LL SEE A FEW OF THESE HERE.
WHAT YOU ALL DID HAD A LOT OF
BREADTH BUT A FEW THINGS CAME UP
AND WE WANTED TO MAKE THOSE
CLEAR AHEAD OF GOING UP SO YOU
COULD LISTEN FOR THESE THINGS.
THE GROUPS WANTED TO PURSUE
INCLUSIVE LEARNING.
LENOREA TALKED ABOUT THE RFI,
WE'RE TRYING TO HEAR FROM
PATIENTS AND CAREGIVERS TO
SCIENTISTS AND RESEARCHERS,
THROUGH TO INDUSTRY, ACADEMIA,
AND FAR BEYOND.
WE SAW GROUPS TALKING ABOUT THE
CHALLENGE THAT COMES WITH
SCOPING, SIZING, MAPPING THE
LYMPHATIC ECOSYSTEM, CLEARLY
SOME WORK THAT NEEDS TO BE DONE.
WE SAW A LOT OF INDICATION OF A
NEED TO FOSTER COLLABORATION AND
ALIGNMENT ACROSS THAT LYMPHATIC
COMMUNITY.
CONSIDERING SOCIAL DETERMINANTS
OF HEALTH AND MAKING SURE WE'RE
HELPING ALL PEOPLE, DESIGNING
ONGOING COMMUNITY SUPPORT AND
INFRASTRUCTURE AND EMPOWERING
AWARENESS AND EDUCATION, PART OF
THE WORK TO COME, AS YOU LISTEN
FOR CONNECTION POINTS THESE ARE
GOOD CLUES OF WHERE YOU'LL SEE
THAT POTENTIAL.
ANY QUESTIONS BEFORE WE GET INTO
THE SHARING?
NO?
OKAY.
SO IF WE MOVE TO THE NEXT SLIDE.
I BELIEVE OUR SCIENTIFIC
COMMITTEE IS KICKING US OFF.
WHO IS PRESENTING FOR SCIENTIFIC
COMMITTEE?
EXCELLENT.
>> ONE BRIEF COMMENT BEFORE THIS
STARTS, WE'LL OPEN THE
DISCUSSION AND PLEASE DON'T
FORGET TO TURN ON YOUR
MICROPHONES.
>> THANK YOU.
I'M TIM PEDERA, MY DAY JOB IS AT
MASS GENERAL HOSPITAL MEDICAL
SCHOOL, MEDICAL SCHOOL.
IF I COULD HAVE THE NEXT SLIDE.
I HAVE THE PRIVILEGE OF
PRESENTING THE WORK FROM THE
SCIENTIFIC ADVANCEMENT
COMMITTEE.
WE WANT TO THANK ALL THE
COMMITTEE MEMBERS AND THANK
MAXIM ITKIN, CO-CHAIR.
WE HAVE A BIG GROUP AND HAD
GREAT VIRTUAL DISCUSSIONS
THROUGH VIRTUAL ENVIRONMENTS OR
ONLINE.
WE'LL LIKE TO SHARE, I LOOK
FORWARD TO DISCUSSION TODAY.
NEXT SLIDE.
SO, THE CURRENT VERSION OF OUR
VISION STATEMENT IS THAT OUR
GROUP AIMS TO BUILD A PERMANENT
RESEARCH INFRASTRUCTURE AND
DEFINE A SCIENTIFIC ROADMAP TO
IN ORDER TO ADVANCE LYMPHATIC
SCIENCE NECESSARY, DEVELOP
DIAGNOSTICS AND THERAPIES FOR
PATIENTS WITH LYMPHATIC DISEASES
AND THE WIDE RANGE OF DISEASES
IMPACTED BY ALTERATIONS IN
LYMPHATIC VASCULAR FUNCTION.
THERE'S A SCIENTIFIC ROADMAP
WHICH WE THINK IS SETTING
PRIORITIES AND AGENDA IN A SHORT
TERM WAY, ONE URGENT THING THAT
NEEDS TO BE ADDRESSED AND FOR
THE FAR FUTURE IN TERMS OF
CONTINUATION AND DEVELOPMENT OF
LYMPHATIC RESEARCH.
THE OTHER PIECE IS PERMANENT
RESEARCH INFRASTRUCTURE.
THAT CAN TAKE ON MANY DIFFERENT
COMPONENTS, INCLUDING SHARED
RESOURCES THAT ARE NEEDED,
CURRENTLY MISSING AMONGST THE
LYMPHATIC RESEARCH COMMUNITY,
THINGS LIKE PATIENT REGISTRIES,
MATERIAL REPOSITORIES AND THAT
SORT OF THING.
AS WELL AS PROBABLY STRUCTURES
LIKELY WITHIN THE NIH TO HELP
DRIVE THIS SCIENTIFIC ROADMAP
FORWARD, LONG INTO THE FUTURE.
THAT CAN HAVE VERY DIFFERENT
LOOKS.
WE CAN THINK OF INTRAMURAL,
WHICH MIGHT BE PART OF THAT,
INTRAMURAL RESEARCH PROGRAM, BUT
ALSO BECAUSE OF THE WIDE NUMBER
OF STAKEHOLDERS WITHIN
LYMPHATICS AND LYMPHATIC
DISEASES LIKELY THIS WILL NEED
TO BE AN OUT WARD-LOOKING SORT
OF INFRASTRUCTURE AS WELL,
TAKING INTO ACCOUNT ALL THOSE
VAST RESOURCES AVAILABLE AND
WE'RE TRYING TO BRING INTO THIS
FIELD AS WELL.
SO, IF I COULD HAVE THE NEXT
SLIDE.
SO, WHY, OF COURSE IT'S
PATIENTS.
IT'S THE 20 MILLION PEOPLE IN
THE U.S. AND 250 MILLION AROUND
THE WORLD SUFFERING FROM
SYMPTOMATIC LYMPHATIC DISEASES.
WE'LL PROBABLY SEE SIMILAR
NUMBERS PRESENTED BY OTHER
GROUPS TODAY, AND THE NUMBERS
MIGHT NOT ALWAYS BE THE SAME OF
WHAT I'VE SHOWN HERE, AND
ACTUALLY I THINK THAT'S OKAY
RIGHT NOW BECAUSE I THINK IT'S
HIGHLIGHTING THE FACT IT'S BEEN
HARD TO IDENTIFY PATIENTS AND
NUMBERS OF THOSE PATIENTS FOR A
VARIETY OF REASONS.
A LOT OF IT IS LIKELY
UNDERDIAGNOSED, PATIENTS ARE NOT
GETTING PROPERLY DIAGNOSED, AND
PROBLEMS CONNECTING DATA HOW
THINGS GET CODED AND INSURANCE.
SOME PEOPLE MIGHT HAVE LYMPHATIC
DISEASE AND GET CODED
DIFFERENTLY FOR INSURANCE
PURPOSES.
PART OF THE CHARGE AND PART OF
THE LEARNING PLAN FOR OUR
COMMITTEE AND THE COMMISSION IS
PROBABLY TO HELP BETTER IDENTIFY
THE PATIENTS THAT ARE HERE.
AND OF COURSE THE OTHER PIECE OF
THAT IS A LOT OF PATIENTS
SUFFERING FROM THESE DISORDERS
AND DISEASES AND MANY OF THEM
HAVE LIMITED ACCESS TO EFFECTIVE
TREATMENT.
AND SO IT'S THAT THEY HAVE THE
DISEASE AND THEY ARE SUFFERING,
AND LEAVING THESE PATIENTS
UNDERSERVED.
IF I CAN PERSONALLY
EDITORIALIZED TALKING FOR ME,
EXTREMELY UNDERSERVED, AGAIN MY
PERSONAL OPINION, I THINK
THERE'S BEEN A FAILURE OF BOTH
LYMPHATIC RESEARCH COMMUNITY
OVER THE YEARS AND SORT OF
CLINICAL MEDICINE, LYMPHATIC
SPACES, AT A SYSTEMWIDE LEVEL
THAT HAS LEFT THESE PATIENTS SO
UNDERSERVED FOR SO LONG.
CAN WE GO BACK ONE SLIDE?
YOU CAN SEE THIS LAST PHRASE,
THE WIDE RANGE OF DISEASES
IMPACTED BY ALTERATIONS OF
VASCULAR LYMPHATIC FUNCTION.
THAT CAME UP, IF WE CAN ADVANCE
TWO SLIDES FORWARD, IN WHAT WE
MEAN BY THAT, I'M GOING TO SEE A
COUPLE SLIDES FROM A BEAUTIFUL
REVIEW FROM OLIVER AND RANDALL
AND TASHA HARVEY, AS THEY LAID
OUT THE REVIEW THEY HAVE SHOWN
THERE'S KNOWN LYMPHATIC DISEASES
LYMPHEDEMA, LIPIDEMIA, CANCER
PROGRESSION, THERE'S A HOST OF
RESEARCH IN THE LAST DECADE
SHOWN AND DRIVEN LYMPHATICS ARE
INVOLVED IN MANY OTHER ORGANS,
MANY DISEASE PROCESSES INCLUDING
THINGS LIKE METABOLIC SYNDROME
AND OBESITY, CROHN'S DISEASE,
IRRITABLE BOWEL SYSTEM, HOW
LYMPHATIC DRAINAGE OF THE CMC
COULD BE AFFECTING A LOT OF
DISEASE PROCESS PARTICULARLY
WHERE THERE'S ACCUMULATION OF
PROTEINS IN THE BRAIN SUCH AS
ALZHEIMER'S, HUNTINGTON'S
DISEASE AND WORK HOW BRAINS CAN
BE REPAIRED AFTER INJURY AND
THINGS LIKE TRAUMA BRAIN INJURY
WHERE LYMPHATIC DRAINAGE COULD
BE HELPING OR USED TO REPAIR THE
BRAIN AFTER THESE INJURIES
BECAUSE PATIENTS WITH TBI ARE
PRONE TO DEVELOPING EARLY ONSET.
CARDIOVASCULAR MEDICINE,
ATHEROSCLEROTIC PARTS, AND
AFFECTING LUNG DISEASES.
UPPER RIGHT, TO BE DETERMINED,
AS WE'VE SOCIETY FORWARD THIS
VISION STATEMENT AND PLANS WE
NEED TO BE OPEN TO THE FACT
THERE'S A LOT OF THINGS WE DON'T
KNOW.
AS WE SET FORTH A BOLD VISION
INTO THE FUTURE, WE NEED TO MAKE
SPACE FOR ALL THE THINGS WE CAN
DISCOVER THROUGH OUR RESEARCH
PLANS.
SO NEXT SLIDE PLEASE.
AND THEN AS I THINK ABOUT
LYMPHATICS I USE THESE TWO
DIAGRAMS, CRITICAL DIAGRAMS.
ON THE LEFT I THINK OF THE FLUID
COMPONENT, LYMPHATICS DRAINING
FLUID AND PREVENTING EDEMA,
CONNECTED TO THE LYMPH NODES,
CRITICAL TO DRIVING OUR SYSTEM.
SO AS WE THINK WE CANNOT
SEPARATE THESE, PLAYING CRITICAL
ROLES, IMMUNOLOGY AND
INFLAMMATION IS PLAYING A ROLE
IN WHAT WE DISCOVER.
THE OTHER THING I LIKE OUR
LYMPHATIC SYSTEM IS NOT IN
COMPARISON TO BLOOD CIRCUMSTANCE
LAKES, IT'S NOT A WELL-MIXED
SYSTEM.
IT IS LOCAL.
THE LYMPH BEING DRAINED WILL
HAVE A DIFFERENT COMPOSITION
THAN THE LYMPH DRAINING OUT OF
YOUR GUT INTO MESS MESENTERIC
LYMPH NODES, HELD BACK FOR SO
LONG, YOU CAN'T SAMPLE ONE LYMPH
NODE AND SAY THIS REPRESENTS ALL
LYMPH NODES.
WE CAN'T SAMPLE LYMPH FROM ONE
AREA AND THINK THAT REPRESENTS
ALL LYMPH.
IT'S TEMPORAL, NOT JUST
GEOGRAPHIC, IT'S TEMPORAL.
I'VE BEEN FASTING THIS MORNING,
MY LYMPH NODES AND MESENTERY IS
DIFFERENT THAN MY LUNCH AND
AFTER EATING AT THE AIRPORT
LATER.
THERE'S ALSO THIS TEMPORAL
COMPONENT.
WE HAVE TO BE OPEN AND AS WE'RE
HAVING THIS REALIZING
COMPLICATIONS WE'RE SETTING
FORWARD THIS RESEARCH PLAN.
NEXT SLIDE PLEASE.
SO, BACK TO WHAT WE'RE TRYING TO
ACCOMPLISH, WE WANT TO DEVELOP
PERMANENT RESEARCH ENTITY TO
EXECUTE A RESEARCH ROADMAP.
NEXT SLIDE.
WHAT THE ENTITY OR ENTITIES NEED
TO DO, WE NEED TO BE ABLE TO
HOLD THAT ENTITY ACCOUNTABLE
INTO THE FUTURE SO WE CAN VERIFY
IT'S ACTUALLY EXECUTING RESEARCH
PLAN AND DRIVING THINGS FORWARD
AS WE HOPE.
AND THEN WE ALSO NEED TO HAVE IT
BE ABLE TO MANAGE SORT OF
RESEARCH INFRASTRUCTURE THAT
NEEDS TO BE DEVELOPED, SHARED
RESOURCES THAT ARE CURRENTLY
LACKING IN OUR FIELD.
THINGS, AGAIN, LIKE PATIENT
REPOSITORIES AND PATIENT
REGISTRIES AS WELL.
SO NEXT SLIDE.
SO SORT OF OUR SHORT-TERM
LEARNING PLANS NEED TO BE
UNDERSTANDING WHAT DIFFERENT
STRUCTURES MIGHT NEED TO BE FOR
CREATING A PERMANENT PRESENCE AT
NIH TO SUPPORT LYMPHATIC
RESEARCH, WHETHER AT A DIVISION,
WITHIN AN INSTITUTE, IN A
CENTER, SO LOOKING FOR WARD TO
PRESENTATIONS LATER TODAY, SLEEP
CENTER, HOW EFFECTIVE THEY HAVE
BEEN DRIVING SLEEP RESEARCH
FORWARD, POTENTIALLY THINKING AT
INSTITUTE LEVEL, THINKING ABOUT
VASCULAR DISEASES THAT ARE SORT
OF SOMEWHAT ORPHANED AMONGST THE
NIH, ANEURYSMS, BLOOD VESSEL
DISORDERS THAT GET LOST AS WELL,
THERE'S A NEED FOR
INSTITUTE-LEVEL AT THAT.
WE NEED TO UNDERSTAND AS A
COMMISSION HOW SUCCESS IS
MEASURED THEY NIH, HOW THESE
DIFFERENT ENTITIES AND LEADERS
ARE HELD ACCOUNTABLE BECAUSE WE
NEED TO THINK ABOUT THOSE THINGS
AS WE DEVELOP THIS PLAN.
WE NEED TO EXPLORE WHAT
RESOURCES ARE NEEDED.
AGAIN, REGISTRIES, THINGS WE
KNOW BUT ARE REALLY THOUGHTFUL
PROCESS IN TERMS OF THINKING
ABOUT WHAT OTHER RESOURCES
RESHARE.
NEXT SLIDE.
THE OTHER PIECE IS THE RESEARCH
ROAD MAP.
WE WANT THIS TO SET FORTH A
VISION THAT'S NEAR TERM AND
URGENT, THINGS WE NEED TO BE
DOING NOW, AS WELL AS BEING ABLE
TO SET FORTH VISION FOR THE
THINGS WE DON'T KNOW WE'RE GOING
TO DISCOVER AND BE ABLE TO
CONTINUE TO DRIVE THAT FORWARD.
WITH THAT WE WANT TO HAVE
SOMETHING MEASURABLE, MILESTONES
TO MEET, THAT ACCOUNTABILITY
PIECE.
NEXT SLIDE.
THESE THINGS ARE THINGS WE'VE
BEEN DISCUSSING, THIS IS WHERE
SCIENTISTS WANTED TO JUMP IN
RIGHT AWAY, IDENTIFY GAPS IN
FUNDAMENTAL SCIENCE, WHAT
DISCOVERIES HAVE BEEN MADE IN
THE LAST DECADE READY FOR
TRANSLATION TO THE CLINIC.
LOTS OF BEAUTIFUL WORK STUDYING
PROCESS INVOLVED IN LYMPHEDEMA,
THINGS TRANSLATING TO THE CLINIC
TO MAKE IT MORE UNIVERSALLY
AVAILABLE TO THE HEALTH CARE
SYSTEM.
WE NEED TO HAVE A DISCUSSION
ABOUT WHAT GAPS AND CLINICAL
NEEDS ARE FOR TREATMENT AND
CLINICAL DIAGNOSIS AND WHAT
LYMPHATIC DISEASE MEANS AND
NCLD, HOW ARE WE DEFINING
LYMPHATIC DISEASE, A DISCUSSION
WE STILL NEED TO HAVE.
BARRIERS THAT MIGHT STOP US?
WE MIGHT RESISTANCE AMONG NIH
AND GOVERNMENT AGENCIES ON
WILLINGNESS TO CONSIDER AND
IMPLEMENT NEW STRUCTURES AND NEW
ENTITIES,I THINK ONE
COMPLICATIONS BY DEFINITION
LYMPHATIC RESEARCH SPANS MANY
INSTITUTES, IT HAS A HOME IN
NHLBI BUT WE KNOW LOOKING FROM
THE SLIDES FROM GUILLERMO'S
REVIEW THIS IS TOUCHING MANY
ORGAN SYSTEMS AND INSTITUTE AS
WELL, OBVIOUSLY WORK IN CANCER,
HEART LUNG BLOOD, NIDDK HAS A
STAKE AND HOW THE CNS WORKS,
THERE'S THINGS TO THINK ABOUT IN
TERMS OF HOW TO WORK ACROSS
INSTITUTES, AND THERE MIGHT BE
ISSUES WITHIN THE NIH AND US
BEING ABLE TO DO THAT.
WE NEED TO LEARN THESE THINGS,
WE MAY HAVE INABILITY TO AFFECT
KEY DECISION WORKERS, THIS TIES
TO THE BULLET POINT OF LACK OF
RECOGNITION IN THE MEDICAL
RESEARCH COMMUNITY IN GENERAL
ABOUT IMPORTANCE OF LYMPHATICS
COMPOUNDED BY COMPLEXITY AND
INABILITY SOMETIMES TO DIAGNOSE
AND LACK OF TREATMENTS FOR MANY
OF THE DISEASES SENDS US ON A
CYCLE OF PEOPLE BECOMING LESS
INTERESTED WHEN THEY DON'T HAVE
SOLUTIONS TO PROVIDE TO THE
PATIENTS.
NEXT SLIDE.
JUST QUICKLY GOING OVER THE NEXT
STEPS, ACTION PLANS, WE HAVE A
BIG COMMITTEE.
WE HAVE THESE TWO SECTIONS SO
MAYBE WE SHOULD BE DIVIDING AND
CONFERRING, HAVING SOME PEOPLE
THINKING ABOUT THE ENTITY, SOME
PEOPLE WORKING ON THE RESEARCH
ROADMAP.
LOOKING FORWARD TO HEARING FROM
THE SLEEP CENTER TODAY MAYBE
ASKING FOR PORTFOLIO ANALYSIS OF
WHAT SLEEP RESEARCH WAS LIKE PRE
THE CENTER BEING ESTABLISH AND
POST TO SEE HOW EFFECTIVE IT'S
BEEN AND LOOK AT THEIR SUCCESSES
AND HOW THEY HAVE DONE THAT,
CONTINUE TO INTERVIEW
STAKEHOLDERS.
NEXT SLIDE.
A LONGER-TERM VIEW OF THE NEXT
YEAR AND REALLY IT'S AGAIN
IDENTIFYING THE GAPS IN CLINICAL
MEDICINE, SCIENTIFIC MEDICINE,
BUILDING AND DRAFTING THE
RESEARCH ROADMAP AND DRAFTING
POTENTIAL IDEAS FOR STRUCTURES
OF THESE ENTITIES IN THE NIH.
I THINK I'LL LEAVE IT THERE AND
MAYBE WE CAN OPEN THE FLOOR TO
DISCUSSION.
I'LL OPEN THIS AND WE'LL
TRANSITION TO BUILDS.
ANY COMMENTS?
>> I'D LIKE TO UNDERSCORE,
TALKING ABOUT THIS ELEMENT OF
PERMANENT STRUCTURE THAT WOULD
HELP TO ORCHESTRATE THIS, I
THINK ONE OF THE THINGS I WOULD
PROPOSE WE NEED TO EXPLORE TO
INDIVIDUALS WHO WILL TALK TO US
LATER TODAY, THE SLEEP CENTER
EXPERIENCE IS -- CERTAINLY THEY
CAN HELP TO IDENTIFY FOR US
GAINS THEY PERCEIVE IN HAVING
DONE THIS BUT WE WANT TO KNOW
SOMETHING ABOUT THE ROAD NOT
TAKEN, WHAT WAS GIVEN UP BY
GOING THIS CENTER, WHAT DO WE
LOSE IF WE CODIFY SOMETHING TOE
THAT DEGREE, THAT WOULD BE MY
PROPOSAL, MAYBE WE CAN EXPLORE
THAT.
>> BUILDING ON THAT NOT JUST
WHAT DID THEY GET UP BUT WHAT
HAS BEEN THE COST, WHAT DOESN'T
GO WELL, WHAT IS THE REAL DOWN
SIDE, THE EXPERIENCED DOWN SIDE
OF DOING IT THAT WAY VERSUS --
AND WHAT OTHER STRUCTURES DID
THEY EXPLORE, YEAH.
I THINK FROM MY PERSPECTIVE IN
THE FIELD, I REPRESENT THE
CNS/ALZHEIMER'S SPACE, SEEMS
LIKE THERE'S -- THERE WILL HAVE
TO BE OR SEEMS LIKE THERE WILL
HAVE TO BE AN INEVITABLE
TRADEOFF BETWEEN INTENSE FOCUS
AND LEVERAGE ON CORE LYMPHATICS
DISEASES AS CURRENTLY UNDERSTOOD
VERSUS OPENING TO INCLUDE THINGS
TO SEEM TO BE IMPACTED BY
LYMPHATIC FUNCTION OR
DYSFUNCTION EXTENDING TO
VIRTUALLY EVERY PSYCHIATRIC OR
PSYCHIATRIC DISORDER THERE IS.
THAT OPENS THE TENT AND BRINGS
IN A LOT OF INTEREST, YOU WILL
ALSO LOSE LEVERAGE BECAUSE YOU
BRING IN SO MANY STAKEHOLDERS,
SO I THINK HOW THAT GETS
BALANCED WILL BE AN IMPORTANT
THING.
I DON'T OFFER ANY SOLUTION TO
THAT WHATSOEVER.
>> I WOULD HOPE THAT WE COULD
TURN THAT NEGATIVE INTO A
POSITIVE BECAUSE IT SEEMS LIKE
THERE'S SO MANY PEOPLE IMPACTED
BY LYMPHATICS ONE WAY OR ANOTHER
WITH THE DISEASES THEY ENCOUNTER
THAT IF WE COULD FIGURE OUT WAYS
IN WHICH TO PULL THEM INTO THE
TENT AND GET THEM TO WORK WITH
US THAT WOULD BE WONDERFUL.
I HAVE NO ANSWER FOR THAT
EITHER.
>> YEAH, SO RELATED TO THAT, I
THINK THIS IS -- I'VE BEEN IN
THIS FIELD FOR OVER 25 YEARS AND
I THINK THIS IS AN AMAZING
OPPORTUNITY TO REALLY BROADEN
THE FIELD.
AND JUST INCLUDE -- MAKE IT
COMPLICATED, I AGREE, BUT TO
INCLUDE AND REACH PEOPLE IN
DIFFERENT AREAS THAT LYMPHATICS
COULD BE HIGH, SOME OF THOSE
DISORDERS HAVE NEVER BEEN
CONSIDERED BEFORE.
THAT WOULD GIVE US MORE LEVERAGE
EVENTUALLY AS SOMEONE SAID TO
INCLUDE OTHER INSTITUTES TO
PARTICIPATE INTO THAT.
BUT I THINK FOR ME THE MAJOR
ASPECT IS THE TEACHING, THE
MEDICAL SCHOOL, ABOUT
LYMPHATICS.
I THINK THERE'S A BIG IGNORANCE
ABOUT IT.
MOST CLINICIANS, I'M NOT ONE,
BUT MOST CLINICIANS IF YOU TALK
TO THEM, FOR THEM IT'S JUST
LYMPHEDEMA OR METASTASIS, THAT'S
IT.
AND ONE MAJOR ACCOMPLISH.
WE BELIEVE EVENTUALLY WE NEED TO
MODERNIZE TEXT BOOKS FOR MEDICAL
SCHOOL AND SOMEONE NEEDS TO
TEACH MEDICAL STUDENTS ABOUT IT
AND POTENTIAL BEHIND
CARDIOVASCULAR DISEASE,
NEUROLOGICAL DISEASE, THERE IS
AN UNDERLYING LYMPHATIC
MALFUNCTION ASPECT.
FOR ME JUST DOING THAT WOULD BE
A MAJOR ACCOMPLISHMENT.
MANY OF US HAVE BEEN TRYING TO
BRING THIS FACT AND HAS BEEN NOT
EASY SO FAR.
SO THAT'S IT.
>> I'D LIKE TO HOPE TO COMMENTS
ABOUT BUILDS FOR THIS COMMITTEE,
ANYTHING YOU'D LIKE TO SEE THEM
DOING DIFFERENTLY OR IN ADDITION
TO WHAT WE HAVE PLANNED?
>> SO I JUST WANT TO SAY THE
PAST FEW DAYS I'VE BEEN THINKING
A LOT ABOUT NUTRITION AND HOW
NUTRITION IMPACTS LYMPHATIC
DISEASE, AND I THINK HAS WE
THINK ABOUT THIS ROADMAP THAT'S
CREATED, THAT THAT'S A PART OF
IT.
AND ALSO A PART OF LIKE I'VE
BEEN DOING A LITTLE RESEARCH AND
SEEING HOW MUCH INFORMATION IS
OUT THERE ON LYMPHATIC DISEASE
AND NUTRITION AND HOW NUTRITION
IMPACTS THAT.
SO I THINK THAT'S A CRITICAL
ELEMENT THAT NEEDS TO BE ADDED,
THE SCIENTIFIC ADVANCEMENT AND
PATIENT TOOLS END AS WELL.
>> THANK YOU FOR THAT.
OTHER THOUGHTS?
I'M SEEING NONE.
I'D LOVE TO HAVE A CONVERSATION
ABOUT SOME CONNECTION POINTS,
MAYBE YOU HEARD IN THAT.
WE HEARD A LITTLE BIT OF
CONNECTION BETWEEN POINT BETWEEN
COMMITTEE AND THE THIRD PARTY
COVERAGE COMMITTEE.
THIS COMMITTEE EVEN ON THE
COMMUNITY GROWTH COMMITTEE, I'D
LOVE TO HEAR FROM YOU AS WE
LISTEN WHAT CONNECTIONS DID YOU
HEAR BETWEEN THIS COMMITTEE AND
YOUR OWN WORK?
>> WELL, I'D JUST ADD THAT
EMBEDDED IN THAT I KEPT --
[ NO AUDIO ]
YOU KNOW, AGAIN AS WE BUILD OUT
THE ROADMAP AND BUILD OUT SORT
OF ENTITIES WHAT ARE SOME OF THE
METRICS WE CAN USE, WHAT
MILESTONES SHOULD BE INCLUDED.
>> I THINK ALSO GUILLERMO
ARTICULATED AN OVERLAP WITH THE
EDUCATION IN TERMS OF IN ORDER
TO BROADEN TENT PEOPLE NEED TO
KNOW ABOUT LYMPHATIC FUNCTION
AND DYSFUNCTION IN VARIOUS WAYS
INCLUDING MEDICAL SCHOOL, IN THE
LEX TON HOW PEOPLE THINK ABOUT
HUMAN DISEASE SO I SEE AN
OBVIOUS GROUND-LEVEL OVERLAP
WITH EDUCATION COMMITTEE AS
WELL.
>> ONE INFERENTIAL COMMENT THAT
TIES THINGS TOGETHER IS THAT
AMONG SCIENTIFIC TRAINEES TODAY
ONE HEARS THERE'S A
DISINCENTIVIZATION TO ENTER THE
TASTE BECAUSE OF PERCEPTION
FUNDING MAY NOT BE AS ROBUST FOR
THIS WORK AS OTHER AREAS.
SO PERHAPS WE NEED TO THINK
ABOUT THAT AS A PROBLEM, HOW DO
WE OVERCOME PERCEPTION OF THE
LACK OF INCENTIVE OR CREATE
INCENTIVES IN ORDER TO ENTER
THIS SPACE BECAUSE I KNOW WE ALL
KNOW THERE ARE MANY
EXCEPTIONALLY TRAINED SCIENTISTS
THAT COULD DRIVE THIS FORWARD IF
THEY SIMPLY CHOSE TO DEVELOP
THEIR EFFORTS TO THE PROBLEMS AT
HAND.
>> I WANT TO FOLLOW IN THE
POLITICALLY CORRECT EXPRESSION,
FUNDING IS NOT A WORD NIH LIKES
TO USE.
YES, THAT'S A MAJOR OBSTACLE ON
THESE BECAUSE WE ARE COMPETING
WITH EVERY OTHER TOPIC THAT YOU
CAN IMAGINE, AND ALTHOUGH OUR
COMMUNITY HAS GROWN WHEN WE
STARTED WITH THE FIRST
CONFERENCE 20 YEARS AGO THAT WE
DIDN'T FEEL THE NUMBER NEEDED TO
CONTINUE.
NOW THEY ARE OVERSUBSCRIBED.
STILL THERE'S A VERY LIMITED
NUMBER OF INVESTIGATORS.
EVEN NOW WITH THIS COMMISSION
I'VE BEEN TALKING IN MEETINGS
AND WITH COLLEAGUES, AND A LOT
OF PEOPLE SHOW INTEREST ON WHAT
THEY ARE DOING TO EXPAND INTO
LYMPHATICS BUT THE FIRST
QUESTION IS THE MONEY.
UNFORTUNATELY, I SAID, NO,
THERE'S AN INTEREST BUT THERE IS
NO MORE MONEY.
AND I THINK IF WE WANT TO
ATTRACT MORE PEOPLE, I THINK WE
NEED TO FIND A WAY TO MAKE IT
MORE.
THERE IS MORE FUNDING AVAILABLE
FOR THIS TOPIC IN PARTICULAR.
AND I HAVEN'T SEEN THIS CHANGE
SINCE I'M WRITING GRANTS IN THIS
TOPIC, HASN'T CHANGED AT ALL.
THERE'S INTEREST, ENTHUSIASM,
PROGRESS, BUT NOT REFLECTED IN
THE FUNDING THAT IS PROVIDED TO
US.
>> I WONDER IF THERE ISN'T A WAY
TO SORT OF NOT REALLY REDIRECT
FUNDING BUT TO JUST INTEREST
SOME OF THE OTHER GROUPS.
FOR EXAMPLE, 20% OF AMERICANS
HAVE CHRONIC VENOUS DISEASE,
THAT'S A SHOCKING, THAT'S ONE IN
FIVE.
THE PEOPLE WORKING ON VENOUS
DISEASE IF WE COULD ATTRACT THEM
OVER TO USE THE FUNDING THEY
HAVE INTO LYMPHATICS THEY ALL
HAVE, ACCORDING TO MY COLLEAGUE
WHO HAS IMAGED THEM, THEY ALL
HAVE A STAGNANT LYMPH, CHRONIC
VENOUS DISEASE, HOW CAN WE
ATTRACT THOSE PEOPLE TO USE THE
FUNDING THAT IS AVAILABLE TO
THEM TO LOOK AT LYMPHATICS?
>> YEAH, TWO POINTS THAT CONNECT
WITH MY TWO COMMITTEES.
I'M IN THE MEASURABLE RESULTS
COMMITTEE SO THE QUESTION FOR
THE SLEEP CENTER IS HOW DO THEY
MEASURE RESULTS, HOW DO THIS
ACTUALLY -- I LIKE WHAT YOU
ASKED, HAVE YOU -- ASKING THOSE
INDIVIDUALS, HOW DO THEY MOVE
THE DIAL, AND MY QUESTION WOULD
BE HOW DO YOU KNOW THAT YOU
MOVED THE DIAL, AND WHAT ARE
YOUR APPROACHES TO MEASURING
THAT DON'T INCLUDE JUST MILLIONS
OF DOLLARS OF FUNDING BOUGH AT
BECAUSE IT MAY NOT TRANSLATE
INTO IMPROVING ANY SITUATION.
THAT'S THE QUESTION I HAVE.
I'M ALSO ON COMMUNITY GROWTH AND
MY PERSPECTIVE IS SCIENTIFIC
COMMUNITY GROWTH, I WONDER HOW
MUCH -- IT'S MY IMPRESSION
LYMPHATIC WORK TENDS TO LIVE IN
NHLBI, IS THAT A TRUE STATEMENT?
>> NOT NECESSARILY.
>> OKAY.
>> IT'S DISTRIBUTED.
>> SO MAYBE A SOLUTION FOR
FUNDING PROBLEM.
SO I LIVE IN THE ALZHEIMER'S
SPACE WITH A CLEAR
CONGRESSIONALLY MANDATED FUNDING
MANDATE, RIGHT?
IF ALZHEIMER'S DISEASE WAS
LYMPHATIC DISEASE, THERE'S AN
ADULT TO CONNECT TO THAT
MANDATE, RIGHT?
THAT BY ALIGNING WITH THOSE
OTHER TYPES OF PRIORITIES AND IF
IT'S TRUE LYMPHATIC FUNCTION
AFFECTS ALL OF THESE THAT
ALIGNMENT CAN BE USEFUL,
POLITICAL COSTS I WONDER IS
WOULD NIA APPRECIATE THAT?
WOULD NINDS APPRECIATE THAT?
AND OUT OF THAT WORK INSIDE NIH
WHEN YOU THINK ABOUT DIVIDING UP
THOSE POTS AND HAVING A
CONSTITUENCY SORT OF TRYING TO
AGITATE FOR ME.
>> IF I CAN ANSWER ONE BRIEF
QUESTION YOU ASKED, BECAUSE WE
DID DO PORTFOLIO ANALYSIS IN --
TWO YEARS AGO, AND THERE ARE 11
NIH INSTITUTES THAT HAVE
LYMPHATIC RESEARCH IN THEIR
PORTFOLIO.
THE LARGEST FUND OF MONEY IS
SPEND IN NHLBI AND NCI, JUST TO
LET YOU KNOW.
>> THANK YOU SO MUCH.
I WANT TO SORT OF PUT THE
DISCLAIMER, I'M NOT A MEMBER OF
THE COMMISSION BUT I'M PART OF
THE LARGE GROUP THAT'S
SUPPORTING, HAS BEEN SUPPORTING
LYMPHATIC RESEARCH AT THE NIH
FOR MANY YEARS.
I'VE BEEN CHAIR OF THE TRANS-NIH
COORDINATION.
SELEN IS ACTING ALSO AS
EXECUTIVE SECRETARY.
BUT I'VE BEEN LEADING THIS FOR
MANY YEARS NOW.
I WOULD SAY PROBABLY FIVE OR
SIX.
AND THE COMMITTEE IS WORKING
TOGETHER WITH ALL THE INSTITUTES
THAT HAVE LYMPHATIC RESEARCH.
WE HAVE IDENTIFIED AND RECRUITED
ALL THE INSTITUTES THROUGH THEIR
REPRESENTATIVES, AND THE
IMPRESSION THAT LYMPHATIC
RESEARCH LIVES AT THE NHLBI IS
BASED I THINK, FIRST IN REALITY,
SECOND IN POTENTIALLY
PERCEPTION, SO WE DO HAVE A VERY
LARGE INVESTMENT AMONG THE NIH
INSTITUTES IN LYMPHATIC
RESEARCH.
WE SUPPORT RESEARCH THAT IS
RELATED TO THE NORMAL FUNCTION
OF THE LYMPHATIC DISEASE WORLD
MAYBE, INCLUDING IN THE BRAIN,
AS WELL AS VARIOUS CONDITIONS
THAT DON'T FALL SQUARELY WITHIN
OTHER INSTITUTES.
SO WHAT WE'RE TRYING TO DO IS
BRING TOGETHER EVERYONE.
SELEN SUGGESTED WE ALREADY DID
PORTFOLIO ANALYSIS, AND THIS
TOPIC SUCH AS MANY OTHER TOPICS
FALL SORT OF WITHIN THE NIH
PHILOSOPHY OF LETTING THE PEER
REVIEW SYSTEM PICK THE BEST
PROPOSALS.
WE DID NOT FIND ANY KIND OF
DIFFERENCE.
IN FACT, WE THROUGH OUR EFFORTS
FOUND THE LYMPHATIC RESEARCHERS
HAVE A BETTER CHANCE OF GETTING
FUNDED THAN OTHER BUT THERE'S NO
SET ASIDE AND THAT'S TRUE FOR A
LOT OF OTHER THINGS.
I LEAD THE VASCULAR AND
HYPERTENSION BRANCH.
AS YOU CAN IMAGINE, WE COVER THE
VASCULATURE, BLOOD AND
LYMPHATIC, FROM HEAD TO TOE
LITERALLY.
BRAIN VASCULATURE, WE COVER
EVERY ORGAN WHEN IT'S NORMAL.
WHEN IT'S ABNORMAL IN SOME CASES
IF IT'S DUE, SAY, TO
HYPERTENSION OR DIRECT KNOWLEDGE
OF VASCULAR DISEASES BUT THEN
AGAIN IT GOES TO OTHER
INSTITUTES.
THAT'S HOW THE NIH IS BUILT.
WE'VE BEEN TRYING TO CLOSE THE
GAP ALL THE TIME.
THAT'S ENOUGH ABOUT SAYING THIS,
WE WILL BE HAPPY TO PRESENT THE
REPORT IF THAT'S SOMETHING THE
COMMISSION WOULD LIKE.
WE PRESENTED THIS IN A COUPLE OF
MEETINGS, WE CAN REFRESH IT AND
PRESENT IT.
BUT I DO HAVE A QUESTION FOR THE
SCIENTIFIC COMMITTEE, AND MAYBE
IT WILL BE ADDRESSED BY OTHER
WORKING GROUPS.
AND MY QUESTION IS, WHEN YOU
LOOK AT LYMPHATIC OR HOW WE CAN
TRULY CONQUER LET'S SAY THE
CHALLENGE OF LYMPHATIC DISEASES
WHICH IS TRUE FOR PROBABLY ANY
OTHER DISEASE, WE'RE LOOKING AT
TRANSLATION THAT GOES TO MANY,
MANY DIFFERENT STEPS.
AND IT GOES WELL BEYOND THE NIH.
AND EVEN IF YOU FIGURE OUT
EVERYTHING THEN YOU STILL HAVE
TO PUT IT, YOU KNOW, ON THE
RECORD AND HAVE IT REIMBURSED
AND ALL THAT.
BUT FROM THE POINT OF VIEW OF
THE SCIENTIFIC COMMITTEE, I
DON'T KNOW, I MIGHT HAVE MISSED,
BUT ONE GOAL WOULD BE TO FIGURE
OUT WHAT IS NEEDED TO DIAGNOSE
THIS, THE VARIOUS ASPECTS OF
LYMPHATIC DISEASES SO THEY CAN
ACTUALLY BE IDENTIFIED IN
PATIENTS AND THEY'D BE
RECOGNIZED FOR REIMBURSEMENT AND
SO FORTH.
THIS GOES WELL BEYOND THE NIH,
BUT WHAT THE NIH CAN DOT THE
FIRST PART, UNDERSTANDING THE
SCIENCE AND SCIENTIFIC EVIDENCE
THAT IS NEEDED IN ORDER TO PUSH
THE FIELD.
>> THANK YOU FOR THOSE COMMENTS.
WE AGREE.
WE'VE ALWAYS INCLUDED DIAGNOSIS
AND TREATMENT AS SORT OF THE END
GOALS.
WE HAVE TO BE ABLE TO IDENTIFY
THE PATIENTS AND EFFICIENTLY
DIAGNOSE THEM.
THERE'S NO -- MOST INSTITUTIONS
CAN'T JUST ORDER A LYMPHATIC
TEST TO FIGURE OUT, YOU KNOW, IF
THERE'S SOME LYMPHATIC DISORDER.
TECHNOLOGY EXISTS BUT THEY ARE
IN SPECIALIZED CENTERS.
WE'VE BEEN TALKING ABOUT HOW YOU
CREATE SOMETHING WIDELY
AVAILABLE IN DIAGNOSIS AND THEN
ALSO ON THE TREATMENTS.
YOU KNOW, LISTENING TO THIS I
COME BACK, THIS IS DISCUSSION
STAN AND I HAD, THERE'S A FIELD
OF LYMPHATIC MEDICINE, IT'S
STARTING, IT'S STARTED, IT
EXISTS BUT IT'S SMALL IN
SPECIALIZED PLACES.
ITS PURVIEW IS LIMIT IN SCOPE,
IN THE LAST DECADE WE'VE BEEN
LEARNING.
I THINK ABOUT THE OPPORTUNITY OF
THE COMMISSION ON LYMPHATICS,
LYMPHATIC DISEASES, HOW DO WE
CREATE THE FIELD WHICH INCLUDES
DIAGNOSIS AND TREATMENT AND
COULD WOULD HAVE LYMPHATIC
DISEASESES DEFINED NOW AND ALL
THAT GARBLE AT THE END OF OUR
VISION STATEMENT, ALL THESE
DISEASES LYMPHATICS ARE PLAYING
A ROLE IN WE HAVEN'T FIGURED OUT
HOW YET, SO SOMETHING IMPROVING
LYMPHATIC FUNCTION, LYMPHEDEMA
MIGHT BE IMPROVING LYMPHATIC
FUNCTION TO HELP CLEARANCE IN
THE BRAIN FOR DEMENTIA AFTER TBI
SO I THINK ALL THAT COMING
TOGETHER, YES, IT'S RESEARCH
BASED BUT THE BASIC SCIENCE HAS
TO BE DONE TO ALLOW ALL THOSE
TRANSLATIONAL THINGS TO HAPPEN
NEXT.
BUT I DON'T THINK -- WHEN YOU
SEE SOME OTHER COMMITTEES THERE
IS THAT TRANSLATIONAL HOW DO WE
GET THIS OUT IN THE WORLD AND
YOU'RE RIGHT, THAT MIGHT BE
BEYOND NIH, THAT'S SOMETHING AS
A COMMITTEE, THAT'S OUR
DILIGENCE.
WE HAVE TO FIGURE THAT OUT.
WHEN WE TALK ABOUT PERMANENT
RESEARCH INFRASTRUCTURE I THINK
NIH IS PART OF THAT BUT IT MIGHT
NOT ONLY BE NIH AS PART OF THAT
AS WELL.
>> SO, I'D LIKE TO PUT SOME
POSITIVE SPIN.
IN 20 YEARS IN THE LYMPHATIC
FIELD, RIGHT NOW REVOLUTION,
LOOK AT THIS COMMITTEE, DoD,
CDRN, AND MOST RECENTLY ARPA-H,
ANSWERING THE QUESTION ARPA-H IS
DESIGNED TO CREATE METHODS TO
IMAGE AND IT WILL BE
TRANSFORMATION.
IT'S UNDER THE RADAR, WE DON'T
SEE IT.
EVEN THE SMALLEST RUDIMENTARY
TECHNIQUES BROUGHT TREATMENT
OPPORTUNITIES AND UNDERSTANDING
WHAT'S GOING ON.
SO ARPA-H, IN ITS QUEST, ALL
THAT'S HAPPENING NOW IS BECAUSE
OF THIS EFFORT.
AND WE'RE HOPEFUL THAT WHAT
COMES FROM ARPA-H WILL BE
TREATMENT, WE DON'T KNOW.
ARPA-H WILL BE TRANSFORMATIONAL.
>> WE COULD ASK THE SLEEP
PEOPLE, THEY ESTABLISHED IN THE
'90s SLEEP DISORDERS
RESEARCH -- EXCUSE ME,
SPECIALIZED CENTERS OF RESEARCH
AND OTHER ENTITIES, IT WOULD BE
NICE TO GET FEEDBACK HOW TO EACH
OF THOSE ENTITIES WORKED OR
DIDN'T WORK SO WE DON'T MAKE THE
SAME MISTAKE GOING FORWARD.
>> IF I CAN REMIND, JUST TO LET
YOU KNOW IN YOUR AGENDA YOU'RE
GOING TO HAVE THE PEOPLE WHO
WILL BE ANSWERING THOSE
QUESTIONS SPECIFICALLY JUST TO
LET YOU KNOW.
>> YEAH, JUST TO FOLLOW MAX,
WHAT YOU WERE SAYING, YES,
OBVIOUSLY DIAGNOSIS IS EXTREMELY
IMPORTANT AND IT'S BECOMING A
REALITY AT LEAST IN SYMPTOMATIC
LYMPHATIC DISEASES.
LET'S BE CLEAR.
THE PROBLEM WHAT WE HAVE IS THAT
SOMEONE MAY HAVE CARDIAC
PROBLEM, NO OBVIOUS LYMPHATIC
DECONDITION, WE NEED SOME
METHODS TO HAVE KIND OF
BIOMARKERS WHERE WE'VE BEEN
TRYING FOR A WHILE AND I THINK
SOME METHOD THAT'S NOT SO
INVASIVE WHEN THE PHYSICIAN
DOESN'T HAVE ANY CLUE WHAT IS
THE UNDERLYING CONDITION THEY
MAY THINK, OKAY, MAYBE IT'S
LYMPHATIC BUT THEY NEED TO FIND
A WAY TO DETERMINE IT IS A
LYMPHATIC CONDITION THAT'S
HAPPENING.
IN THE NON-SYMPTOMATIC
SITUATIONS THAT THE TEAM WAS
PRESENTING, THAT'S NOT EASY TO
CONVINCE HEALTH INSURANCE
PROVIDER OR PATIENT EVEN LET'S
SEE IF LYMPHATICS ARE THE ONES
IMPACTED INTO THAT.
THAT'S WHY I ALSO BELIEVE THAT
GETTING CLINICIANS TOGETHER
PARTICULARLY THOSE THAT ARE
SEEING PATIENTS WITH LYMPHATIC
CONDITION MAKE A REAL AS LARGE
AS POSSIBLE DATABASE, WHAT
ASSOCIATED DISEASES OR
MALFUNCTIONS THESE PATIENTS
HAVE.
SO SOMEONE THAT HAS LYMPHEDEMA,
THAT ALSO HAS CARDIOVASCULAR,
OBESITY, ALZHEIMER'S, YOU NAME
IT, A WAY TO PROVE AND JUSTIFY
THE IDEA THAT BEYOND THESE
LYMPHATIC MALFUNCTIONS THERE IS
OTHER DISEASES ASSOCIATED WITH
THAT.
I THINK CLINICIANS ARE THE ONES
THAT CAN PROVIDE THAT
INFORMATION, BECAUSE THEY HAVE
IT.
THEY ALREADY HAVE IT.
AND STAN HAS PUBLISHED THAT.
I DON'T KNOW HOW MANY
PUBLICATIONS, A NUMBER OF
ASSOCIATED DISORDERS IN PATIENTS
WITH THE DISEASE.
>> GUILLERMO, YOU'VE BRINGING UP
THE OVERLAP.
EVEN IF THERE WAS A PERFECT
BIOMARKER TEST IT'S ONLY AS GOOD
AS THE CLINICIAN TO ORDER IT.
THEY GO HAND IN HIT.
WE HAVE TO GET THE WORD OUT.
>> SO WHEN I GIVE A TALK AT MY
INSTITUTION, WHAT PATIENT SAID
TO YOU.
YOU HAVE NO IDEA WHAT'S GOING
ON.
>> WHAT STARTS?
>> EVERY MONTH, TWO MONTHS, WE
HAVE THIS TYPE OF SITUATION AND
WE CAN HELP.
>> WE'RE GOING TO NEED TO MOVE
TO THE NEXT COMMITTEE REPORT.
I'M GOING TO MAKE ONE FINAL
COMMENT.
I WANT TO GO BACK TO THE WHOLE
QUESTION OF THE FUNDING
RESOURCES WITHIN THE NIH ITSELF
BUT I THINK IT'S VERY
ENCOURAGING TO HEAR THAT THE
PORTFOLIO ANALYSIS LOOKS
POSITIVE, AND THAT THE FUNDING
IS DISTRIBUTED ACROSS THE
I.C.s, BUT I THINK SUBSIDIARY
QUESTION HARDER TO ANSWER BUT
BEGS ATTENTION, WHAT IS THE
PROPORTIONALITY, IF WE'RE
SITTING HERE SAYING THE WHOLE
UNIVERSE OF HUMAN DISEASE IS
IMPACTED BY LYMPHATIC DISEASE OR
LYMPHATICS MALFUNCTION WE'LL
CALL IT OR MALFORMATION,
WHATEVER IT MAY BE, IS THE
AMOUNT OF SHEER FUNDING THAT IS
DIRECTED IN THIS PATH,
PROPORTIONAL TO WHAT WE THINK
THE MAGNITUDE OF THE PROSECUTE
-- PROBLEM IS, PORTFOLIO
ANALYSIS COULD BE DONE IN OTHER
CUB U. SUBCATEGORIES, WHAT IS
THE PERCENTAGE HERE AND ARE WE
GETTING A FAIR ENOUGH SHARE OF
WHAT WE NEED.
I PUT THAT OUT FOR JUST GENERAL
REFLECTION.
>> THANK YOU, STAN.
GREAT DISCUSSION, EVERYONE.
I THINK WE'RE GOING TO MOVE TO
THE EDUCATIONAL IMPERATIVE
COMMITTEE.
WHILE THE PRESENTER TAKES THE
PODIUM I'LL RECAP.
IMPORTANT TO BE TALKING ABOUT
THE CONNECTIONS WE'RE HEAR
AMONGST THE GROUPS.
TWO THINGS FLAGGED FOR ME IN THE
LAST CONVERSATION THAT PROBABLY
IMPACT EVERY SINGLE GROUP, I ASK
THAT YOU TAKE THIS BACK TO YOUR
COMMITTEES AND TALK ABOUT
FUNDING, FOR ONE, RIGHT?
SO REGARDLESS OF WHETHER YOU'RE
ON A SCIENTIFIC ADVANCEMENT OR
PATIENT TOOLS COMMITTEE WHAT'S
REQUIRED AND WHAT'S THE FUNDING
IMPLICATION OF THAT.
THE OTHER ONE IS MAYBE A LITTLE
BIT MORE SUBTLE, WHICH IS THE
PERMANENT ENTITY.
SO IF WE DO DECIDE TO PURSUE
RECOMMENDING A PERMANENT ENTITY,
THAT CAN JUST BE FOCUSED ON
SCIENTIFIC ADVANCEMENT OR THAT
ENTITY CAN ALSO HAVE
ACCOUNTABILITY TOWARDS COMMUNITY
GROWTH AND PATIENT TOOLS AND
MEDICAL EDUCATION, SO START
THINKING ABOUT THAT IS THE
RECOMMENDATION WHAT YOUR
COMMITTEE NEED FROM THE
PERMANENT ENTITY AND WE CAN
DESIGN IT.
ALL RIGHT.
REBECCA TAKE US THROUGH THE WORK
OF THE EDUCATIONAL IMPERATIVES
COMMITTEE.
>> IT'S A PLEASURE TO HAVE THE
OPPORTUNITY TO PROVIDE UPDATES
ON BEHALF OF THE COMMITTEE.
>> CAN YOU INCREASE YOUR VOLUME
PLEASE?
>> SURE.
HOW ABOUT THAT?
IS THAT IMPROVED?
>> OUR AV TEAM IS WORKING.
ONE SECOND.
>> SURE.
>> TRY AGAIN PLEASE.
IS IT BETTER?
CAN EVERYONE HEAR?
REBECCA, IF YOU CAN PUT YOUR
CAMERA ON.
>> MY CAMERA IS ON.
>> CAN OUR A.V. TEAM SHOW -- WE
WANT TO SEE YOU, REBECCA.
>> EVEN SO IT'S SO BRIGHT AND
EARLY THERE.
>> THANK YOU.
I SEE YOU.
LET'S SEE IF IT WILL BE
REFLECTED ON THE -- ONE MORE
SECOND.
>> WE SEE YOU AND THE SLIDES
>> I DON'T SEE THE SLIDES
ANYMORE.
>> THAT'S THE FUN PART, REBECCA.
>> NOW YOU CAN SEE YOUR SLIDES,
AM I CORRECT?
>> YES, THEY ARE TOGGLING
FORWARD.
>> AWESOME.
>> PERFECT.
>> ALL RIGHT.
>> WE CAN SEE YOU IN THE
VIDEOCAST.
>> WE CAN SEE YOU.
>> OKAY THEN.
IF YOU'RE READY, WE ARE READY.
>> GREAT, THANK YOU.
IT'S A PLEASURE TO HAVE THIS
OPPORTUNITY TO PROVIDE UPDATES
ON BEHALF OF THE EDUCATIONAL
IMPERATIVES COMMITTEE.
OUR GROUP INCLUDES INDIVIDUALS
THAT HAVE EXPERTISE SPANNING THE
SPECTRUM FROM PATIENT
EXPERIENCES TO PATIENT ADVOCACY
WORK, EDUCATORS, RESEARCH
SCIENTISTS, AND CLINICIANS.
WHAT BRINGS US ALL TOGETHER IS A
COMMITMENT TO INCREASING
AWARENESS AND EDUCATION ABOUT
THE LYMPHATIC SYSTEM AND
LYMPHATIC DISEASES.
NEXT SLIDE PLEASE.
THANK YOU.
SO, OUR CURRENT VISION STATEMENT
IS SHOWN HERE.
WE ENVISION A FUTURE IN WHICH
EDUCATIONAL RESOURCES ON
LYMPHATIC FUNCTION AND LYMPHATIC
DISEASES ARE AVAILABLE TO ALL
STAKEHOLDERS.
HEALTH CARE PROVIDERS AND
RESEARCHERS UNDERSTAND THE
IMPLICATIONS OF THE LYMPHATIC
SYSTEM TO THEIR AREA OF
SPECIALTY.
AND PEOPLE LIVING WITH LDs
HAVE ACCESS NOT ONLY TO
EDUCATIONAL RESOURCES BUT ALSO
TO EVIDENCE-BASED AFFORDABLE AND
IMMEDIATE CARE.
SO THIS VISION STATEMENT IS IN
OUR MINDS AND DRIVING OUR
MOTIVATION TO ACCOMPLISH THIS
WORK.
NEXT SLIDE PLEASE.
THE EDUCATIONAL IMPERATIVE WORK
IS CRITICALLY IMPORTANT AS WE'VE
HEARD ALREADY TODAY, THE
LYMPHATIC SYSTEM PLAYS A
FUNDAMENTAL ROLE IN HEALTH, AND
INCREASED AWARENESS OF THIS
SYSTEM AND ITS DYSFUNCTION IS
NEEDED TO ENSURE TIMELY AND
OPTIMIZEDDED HEALTH CARE
DELIVERY AND EDUCATION, RESEARCH
AND DEVELOPMENT OPPORTUNITIES,
AND ENGAGEMENT OF HEALTH-RELATED
GOVERNMENT AGENCIES AND
INSURANCE AND INDUSTRY
STAKEHOLDERS.
WE'VE HEARD HOW EDUCATION IS KEY
AT ALL LEVELS TO DRIVING THIS
WORK FORWARD.
OUR GROUP IS COMING TOGETHER TO
IDENTIFY THE EDUCATIONAL GAPS
THAT CURRENTLY EXIST FOR
PATIENTS AND HEALTH CARE
PROVIDERS AND OTHERS LIKE
RESEARCHERS REGARDING LYMPHATIC
FUNCTION AND LYMPHATIC DISEASES.
AND WE AIM TO ISSUE
RECOMMENDATIONS THROUGH OUR WORK
FOR HOW TO DISSEMINATE KNOWLEDGE
ABOUT THE PATHOPHYSIOLOGY,
DIAGNOSIS, AND TREATMENT OF
LYMPHATIC DISEASES.
AND MORE BROADLY, THE ROLE OF
THE LYMPHATIC SYSTEM IN
PATHOPHYSIOLOGY OF COMMON
DISEASES.
THIS WORK CONNECTS TO THE LARGER
NCLD VISION AND CHARGE IN THAT
IT WILL ESTABLISH CHANNELS FOR
THE TIMELY DISSEMINATION OF
KNOWLEDGE TO THE PUBLIC BY
PROVIDING EDUCATION TO ALL
RELEVANT STAKEHOLDERS.
NEXT SLIDE PLEASE.
TO ENSURE FULL CONSIDERATION WE
MUST BETTER UNDERSTAND A NUMBER
OF FACTORS.
FOR EXAMPLE, WHAT HEALTH CARE
PROFESSIONALS ARE CURRENTLY
TAUGHT ABOUT THE LYMPHATIC
SYSTEM AND LYMPHATIC DISEASES
AND WHEN THIS TRAINING OCCURS.
ANY EXISTING RESOURCES THAT ARE
AVAILABLE FOR PATIENTS AND
CAREGIVERS, AND THE BARRIERS TO
ACCESSING THOSE RESOURCES.
THE MOST EFFECTIVE FORMATS OR
PLATFORMS THAT CAN BE USED TO
DELIVER EDUCATIONAL CONTENT, AND
HOW THAT CONTENT CAN BE
DISSEMINATED TO ENSURE
ACCESSIBILITY TO ALL.
HOW TO ESTABLISH A METHOD FOR
TRANSFORM SCIENTIFIC KNOWLEDGE
TO CLINICAL PRACTICE AND PATIENT
EDUCATION.
FINALLY, HOW ON YOU WORK AS A
COMMITTEE WILL OVERLAP AND
SYNERGIZE WITH THE WORK OF OTHER
COMMITTEES IN THIS COMMISSION.
FOR EXAMPLE, THE PATIENT TOOLS
COMMITTEE, WHICH A NUMBER OF US
ALSO SERVE ON, SHARES A NUMBER
OF GOALS ABOUT PATIENT EDUCATION
AND ACCESS TO EDUCATIONAL
RESOURCES.
AS WE HEARD IN PREVIOUS
PRESENTATION THE SCIENTIFIC
OVERLAP AS WELL AND HOW WE
TRANSFER SCIENTIFIC KNOWLEDGE TO
CLINICIANS AND OTHERS SO THAT IT
AFFECTS TREATMENTS THAT ARE
AVAILABLE FOR PATIENTS.
NEXT SLIDE PLEASE.
TO INCORPORATE THE WORK THAT'S
ALREADY BEEN ACHIEVED WE'LL
LEVERAGE REPORTS AND RESOURCES
FROM THE NIH AND OTHER RELEVANT
GOVERNMENT AGENCIES, FOR EXAMPLE
WE'VE HEARD TRANS-NIH LYMPHATIC
COORDINATION COMMITTEE HAS BEEN
WORKING SO WE WANT TO CAPITALIZE
AND LEVERAGE ON WHAT'S LEARNED
BY OTHERS.
WE'LL ALSO LEVERAGE EXISTING
CURRICULA, EDUCATIONAL
REQUIREMENTS AND CONTENT OF
BOARD CERTIFICATION CURRENT
EXISTING FOR PHYSICIANS, NURSES,
OCCUPATIONAL AND PHYSICAL
THERAPISTS AND LEVERAGE EXISTING
AS TO AND RESOURCES FOR PATIENTS
AND CAREGIVERS.
NEXT SLIDE PLEASE.
WHAT ARE THE POTENTIAL BARRIERS?
THERE ARE A NUMBER OF FACTORS
THAT MAY PROHIBIT SUCCESS OF THE
WORK.
FOR EXAMPLE, HOW TO KEEP THESE
EDUCATIONAL RESOURCES UP TO DATE
GIVEN SCIENTIFIC UNDERSTANDING
OF THE LYMPHATIC SYSTEM.
LDs AND TREATMENTS IS CONSTANT
EYE EVOLVING.
DEGREE TO WHICH VARIOUS
COMMUNITIES MAY BE AWARE OF,
HAVE ACCESS TO AND UTILIZE,
EDUCATIONAL RESOURCES, AND WHICH
OF THESE RESOURCES ARE CURRENTLY
OR WILL BE IN THE FUTURE MOST
HELPFUL.
AND IMPORTANTLY, THE DEGREE TO
WHICH CLINICIANS, EDUCATIONAL
INSTITUTIONS, ACCREDITING BODIES
AND LICENSING BOARDS WILL
RECOGNIZE THE IMPORTANCE OF THE
LYMPHATIC SYSTEM AND LYMPHATIC
DISEASES AND THEN INCLUDE THIS
CONTENT IN THEIR CURRICULA,
BOARD EXAMS, AND CONTINUING
MEDICAL EDUCATION COURSES.
NEXT SLIDE PLEASE.
TO ENSURE INCLUSIVE ACTION WILL
REQUIRE THE SUPPORT AND INPUT
FROM A NUMBER OF DIVERSE GROUPS
OF PEOPLE, TEAMS, AND
ORGANIZATIONS.
SUCH AS NIH, CDC, AND OTHER
RELEVANT GOVERNMENT AGENCIES,
PROFESSIONAL AND CLINICAL
ASSOCIATIONS, FOR EXAMPLE THE
AMERICAN COLLEGE OF SURGEONS AND
MANY OTHERS, PATIENT ADVOCACY
GROUPS AND NETWORKS, EDUCATORS
AT MEDICAL SCHOOLS, NURSING
SCHOOLS, AND PT/OT/LT PROGRAMS
AND ACCREDITING BODIES OF THOSE
SCHOOLS AND PROGRAMS.
AS WELL AS NATIONAL LICENSING
BOARDS FOR MEDICINE, NURSING,
AND PHYSICAL, OCCUPATIONAL,
LYMPHEDEMA THERAPY.
AND FINALLY FUNDING AGENCIES.
NEXT SLIDE PLEASE.
SO, WHAT WILL OUR WORK AS A
COMMITTEE ENTAIL MOVING FORWARD?
IN THE SPRING AND SUMMER WE PLAN
TO CONDUCT AN AUDIT, TO
DETERMINE WHAT IS CURRENTLY
TAUGHT TO MEDICAL, NURSING,
THERAPY STUDENTS, WHEN THIS
TRAINING OCCURS, AND WHAT IS
INCLUDED ON LICENSING BOARD
EXAMS REGARDING LYMPHATIC SYSTEM
AND LYMPHATIC DISEASES.
WE ALSO LOOK FORWARD TO
REVIEWING THE FINDINGS OF THE
PATIENT TOOLS COMMITTEE ON
EXISTING PATIENT AND CAREGIVER
RESOURCES AND ANY BARRIERS TO
ACCESSING THOSE RESOURCES.
AND MOVING INTO THE FALL, WE
WILL CREATE AN INTERIM REPORT
INCLUDING AN ANALYSIS OF THE RFI
DATA THAT WILL BE COLLECTED AND
WILL IDENTIFY ANY GAPS IN THAT
DATA AND THE KEY STAKEHOLDERS
THAT WE WILL NEED TO CONTACT TO
FILL THOSE GAPS.
AND IMPORTANTLY WE PLAN TO
DETERMINE HOW BEST TO ENGAGE
THOSE STAKEHOLDERS, AND IDENTIFY
POTENTIAL PLATFORMS AND FORMATS
TO DELIVER EDUCATIONAL CONTENT,
AND HOW TO DISSEMINATE THAT
CONTENT TO ENSURE ACCESSIBILITY.
TRANSITIONING TO YEAR 2, WE'LL
HOST TARGETED TOWN HALLS AND
OTHER INTERACTIONS WITH KEY
STAKEHOLDERS, TO HELP FILL THE
GAPS IDENTIFIED VIA RFI, AND
WE'LL HAVE AN OPPORTUNITY TO
REVIEW OUR AUDIT FINDINGS ON
CURRICULA AND BOARD EXAM
CONTENT, AND EXISTING PATIENT
AND CAREGIVER RESOURCES, AND
THAT WORK IS GOING TO BE
CRITICAL TO HELP DETERMINE HOW
TO LEVERAGE PREEXISTING
RESOURCES TO ACCOMPLISH THIS
WORK.
IN FEBRUARY AT OUR IN-PERSON
MEETING WE'LL HAVE AN
OPPORTUNITY TO REPORT ON THE
LESSONS LEARNED FROM THESE TOWN
HALLS AND FOCUS GROUPS WITH KEY
STAKEHOLDERS AND OUR AUDIT
FINDINGS.
AND MOVING INTO THE SPRING OF
YEAR 2 WE WILL BE DRAFTING
RECOMMENDATIONS FOR NEXT STEPS,
INCLUDING A STRATEGIC PLAN, FOR
THE DISSEMINATION OF EDUCATIONAL
MATERIALS TO TRAINEES,
PRACTICING CLINICIANS, PATIENTS
AND CAREGIVERS AND OTHERS, AND
IMPORTANTLY HOW TO TRACK AND
CONTINUE THOSE EFFORTS, MEASURE
THEIR RESULTS LONG TERM.
AND FINALLY, YEAR 2 WILL
CULMINATE WITH A REPORT THAT
SUMMARIZES ALL OF OUR FINDINGS
AND RECOMMENDATIONS.
THIS IS OUR TIMELINE AND PLAN
FOR ACCOMPLISHING THIS WORK, AND
TURN OVER THE FLOOR NOW SO WE
CAN HAVE A DISCUSSION AND HEAR
YOUR FEEDBACK.
>> THANK YOU, REBECCA, FOR
REPRESENTING THE GROUP AND
INCLUDING A THOUGHTFUL WALK THEN
WALK-THROUGH OF THE ACTION
PLAN.
I'LL OPEN UP TO THE FLOOR FOR
ANY FEEDBACK IF YOU WANT TO TALK
ABOUT WHAT'S WORKING IN THIS
PLAN, WHAT BUILDS YOU MIGHT
RECOMMEND OR CONNECTIONS TO YOUR
WORK THAT YOU'RE SEEING.
>> GO AHEAD.
>> YOU'VE HEARD ME SAY THIS OVER
AND OVER AGAIN.
WHAT YOU PRESENTED IS GREAT.
AND CLEARLY IS NEEDED.
BUT, AGAIN, IT'S TARGETING
CLASSIC LYMPHATIC DISEASES,
SYMPTOMATIC LYMPHEDEMA
ABSOLUTELY NEEDED AND THIS PLAN
IS TERRIFIC BUT IT'S NOT EASY
YET BUT I WANT TO ASK YOU WE
WERE DISCUSSING THE OTHER ONES
BEFORE, WHICH MAY BE
SYMPTOMATIC, CONSEQUENCE OF
LYMPHATICS MALFUNCTION, WHETHER
WE NEED HELP FROM THE
COMMISSIONS, WE MAY TARGET
THREE, FOUR DISEASES, G.I. OR
SOMETHING LIKE THAT, IDENTIFY
FIVE, SIX, LARGE CLINICS THAT
MAY HAVE PATIENTS FOR WHICH THEY
HAVE THOSE CONDITIONS BUT DON'T
HAVE A CLEAR REASON WHY.
TRY TO BRING THEM TO BE STUDIED
INTO DEPTH TO SEE IF WE IDENTIFY
ANY OF THOSE, ONE OF THOSE
UNDERA LYING CONDITIONS.
OTHERWISE WE WILL EXCLUDE THE
OTHER ONES.
THIS IS A GREAT OPPORTUNITY TO
EXPAND THIS TOPIC.
MAYBE AGAIN WE SHOULD TAKE TWO,
THREE DISEASES, THAT THEY ARE
LARGE, CARDIOVASCULAR DISEASES,
AND THERE ARE MANY, SOMEONE
SHOULD FOCUS AND SEE IF AT THE
END WE SHOW THERE IS SOMETHING
UNDERNEATH.
>> THE COMMITTEE DID DISCUSS
BROADER APPRECIATION OF
INVOLVEMENT IN THE
PATHOPHYSIOLOGY OF COMMON
DISEASES, AND I THINK THE
INFRASTRUCTURE THAT WE'RE
PROPOSING CAN REALLY LAY THE
GROUND WORK FOR FUTURE ABILITY
TO COMMUNICATE IS THAT
LATE-BREAKING RESEARCH AND
UNDERSTANDING TO ALL
STAKEHOLDERS.
SO, YEAH, THE FIRST STEP AND
THIS IS WORK FOR EXISTING
COMMITTEES THAT ALREADY ARE
UNDERSERVED AND UNDERDIAGNOSED,
BUT ABSOLUTELY THE END GOAL
WOULD BE TO CREATE AN
EDUCATIONAL STRATEGIC PLAN THAT
COULD TRANSLATE LATE-BREAKING
CLINICAL FINDINGS TO THE BEDSIDE
AND PATIENT EDUCATION.
>> I THINK THAT WAS A GREAT
WALK-THROUGH, I WOULD CONSIDER
Ph.D. PROGRAMS OR GRADUATE
SCHOOLS, I IMAGINE CELL, CANCER
BIOLOGY PROGRAMS DO A DECENT
JOB.
I CAN TELL YOU ABOUT A TOP TIER
NEUROSCIENCE PROGRAM, THERE'S
NOT A SINGLE MOMENT SPENT
TALKING ABOUT LYMPHATIC SYSTEM.
I KNOW THAT'S FRINGY BUT I THINK
IN THE CENSUS MIGHT BE WORK
THINKING ABOUT WHILE YOU'RE
LOOKING AT MED SCHOOLS AND SUCH,
Ph.D. PROGRAMS, HOW WELL DO
THAT DO, I IMAGINE IT'S UNEVEN
WHO IS DOING IT WELL, WHO IS
NOT.
THE OTHER BIT, CLINICIANS UNLESS
WE WAIT FORE PRESENT CLINICIANS
TO DIE OFF OR RETIRE PROBABLY
NODE TO THINK ABOUT THE CME
PIPELINE.
WHEN YOU GO TO THE BIG CLINICAL
CONFERENCES WHAT IS THE MENU
LIKE PROVIDING INFORMATION ON
LYMPHATIC CONDITION OR DISEASE
AT AAN OR -- I LIVE IN THE BRAIN
WORLD BUT I KNOW THE SAME
CONFERENCES EXIST FOR
EVERYBODY'S SYSTEM, RIGHT?
SO WHAT'S THAT LIKE?
WHEN YOU THINK ABOUT CENSUS,
THAT MIGHT BE WORTH CHECKING OUT
ALSO.
>> TO TAG ON WHAT YOU JUST SAID,
TO BRING IT TO REAL WORLD
PERSPECTIVE ABOUT SIX OR SEVEN
YEARS AGO I HAD THE OPPORTUNITY
TO PUT ON ONE OF THE CME
PROGRAMS AT THE AMERICAN HEART
ASSOCIATION, ATTENDED BY 60,000
PEOPLE, WE HAD SIX PEOPLE SHOW,
IT'S MARKETING, WE NEED TO FIND
A WAY TO MAKE IT IMPORTANT FOR
PEOPLE TO LEARN.
>> GO AHEAD.
>> TO DOVETAIL YOU BRING UP A
WONDERFUL POINT A LOT OF
COLLEAGUES CONSIDERED TOO IS
THAT SOME OF THAT MARKETING IS
GOING TO BE COMING -- EMBEDDING
INTO CLINICIAN'S AWARENESS WHO
ARE ALREADY DOING THE TRAINING
AND THEIR AREA OF SPECIALTY AND
THEIR UNDERSTANDING AND
IMPLICATIONS SO IT'S SORT OF
TAGGING INTO THOSE DIFFERENT
SYSTEMS ACROSS AND NOT BRINGING
IN NEW PRESENTERS, THEY ARE ONLY
GOING TO PRESENT ON LYMPHATICS.
AS MUCH AS I WOULD LOVE
SOMETHING IF THE PREVIOUS
SESSION JUST HAD 400 PEOPLE
SITTING IN IT, IT MIGHT GO DOWN
TO TEN PEOPLE REMAINING IN THE
SPACE UNLESS IT'S KEY LEADERS IN
DIFFERENT AREAS THAT WILL GO TO
GO AHEAD AND EMBED IT, BRING ON
THAT AWARENESS.
ORGANICALLY THIS STARTS TO
BECOME MORE OF AWARENESS WITHIN
THE CLINICIANS, SPECIFICALLY
SEEKING OUT SOME OTHER TYPES OF
EDUCATIONAL OPPORTUNITIES,
PROBABLY WHY THE SIX INDIVIDUALS
SAT THERE.
>> ANOTHER APPROACH MIGHT BE
THROUGH THE BACK DOOR,
UNIVERSITY OF TEXAS M.D.
ANDERSON GRADUATE SCHOOL
BIOMEDICAL SCIENCES TRAINS
PhDs, AND SO FOUR YEARS AGO
DECIDED YOU CAN DO A NANOCOURSE
AND PUT IT ON THERE FOR ONE HOUR
AND PRETTY MUCH COVER MOST OF
THE BASICS AND LYMPHATICS.
YOU'LL PICK UP STUDENTS WHO NEED
THAT ONE HOUR TO GRADUATE AND WE
GET THREE, SOME YEARS SIX, NOT
HUGE, ANOTHER WAY FOR THE
PhDs TO PUT THEIR HANDS UP
AND SAY WHOEVER IS TEACHING THE
CANCER IMMUNOLOGY COURSES OR
THE -- I GUEST LECTURE EVERY
YEAR FOR A COUPLE OF THOSE BRING
IN PAPERS ON LYMPHATICS, THEY
WILL LEARN OR GET EXPOSED, A
SNEAKY WAY TO COME IN AND PUSH
IT FROM THE Ph.D. SIDE.
M.D. SIDE I HAVE NO IDEA HOW
THAT WOULD WORK BUT THAT'S JUST
AN IDEA.
>> I WANT TO ADD GUILLERMO SAID
EARLIER NEED TO HAVE A REGISTRY
OR DATABASE SHOWING HOW MANY
PEOPLE ARE BEING IMPACTED BY
THIS DISEASE.
ONE KEY ELEMENT TO SHOW, I'M
JUST LEARNING SO SO MUCH MORE
AS A PATIENT MYSELF AND BEING
PART OF THIS COMMITTEE, THE
KNOWLEDGE HOW MANY PEOPLE THIS
DISEASE IS IMPACTING.
ONCE THAT'S GATHERED AND PUT OUT
THERE, MORE PEOPLE WILL START TO
LISTEN.
ONCE MORE PEOPLE START TO LISTEN
THERE WILL BE MORE EDUCATION
PLACED ON THIS DISEASE, SO IT'S
IMPORTANT TO THINK ABOUT HOW CAN
WE CREATE A REGISTRY OR DATABASE
OR GATHER INFORMATION FOR PEOPLE
THAT ARE DIAGNOSED OR
SYMPTOMATIC OF LYMPHATIC DISEASE
TO SHOW THIS IS HOW MANY PEOPLE
ARE IMPACTED THAT WE KNOW OF,
RIGHT?
AND THERE ARE EVEN MORE THAN
THAT UNDIAGNOSED THAT SHOWS THE
IMPORTANCE OF MOVING RESEARCH
FORWARD AND MOVING EDUCATION
FORWARD AND SO FORTH.
>> SO, ONE OF THE THINGS MISSING
HERE, IN MY LIFE PRESENT ALL THE
TIME, SOCIAL MEDIA.
BECAUSE IT'S FASTEST AND WIDEST
WAY TO GET TO THE PEOPLE.
SO I'M PART OF DIFFERENT
FACEBOOK PAGES OF DIFFERENT
DISEASES, AND YOU CAN SEE HOW
PEOPLE ARE STRUGGLING IN
UNDERSTANDING.
AND WATCHING THAT I DON'T
PROVIDE BUT SOMETIMES IF YOU
PUBLISH SOMETHING THIS IS A NEW
PAPER AND TREATMENT BUT MOST OF
THE PATIENTS ARE COMING TO US
FROM SOCIAL MEDIA BECAUSE THEY
GO SOMEWHERE, HAVE SYMPTOMS,
FIND A GROUP TALKING ABOUT THIS,
PLACES TO TREAT, SO ON.
SO IT'S ENORMOUSLY IMPORTANT
TOOL WE HAVE TO USE.
I'M NOT SURE HOW.
SO MANY, INSTAGRAM, X, BUT IT'S
ONE.
ON THE TOPIC OF INTEREST,
INTEREST WILL GROW WITH
DEVELOPING NEW TREATMENTS AND
DIAGNOSIS.
IF YOU TREED WILL THEORETICAL
SOMETHING THAT'S BEEN DONE IN
THE LAB, CLINICIAN AND PATIENTS
WOULDN'T BE INTERESTED.
WE'RE STARTING TO SEE THAT.
I WILL BRING ARPA-H INTO THAT.
THE INTEREST WILL EXPLODE
BECAUSE EVENTUALLY WHAT I'M
GOING TO GIVE TO MY PATIENTS,
AND WE'RE GETTING THERE.
>> I HAVE A QUESTION FOR REBECCA
AND FOR THE COMMITTEE.
I'M VERY INTRIGUED BY THE AUDIT
THAT YOU PROPOSE TO DO AND IT'S
GOING TO PROVIDE A LOT OF USEFUL
INFORMATION BUT I WONDER IF YOU
THOUGHT ABOUT WHAT THE POTENTIAL
BARRIERS ARE TO THE ACQUISITION
OF INFORMATION OR WHAT YOUR
RESOURCES WILL BE IN ORDER TO
DETERMINE REALLY WHAT STRUCTURE
OF CURRENT CURRICULA MIGHT BE
AND MORE IMPORTANTLY IN TERMS OF
ACCESS THE LICENSING QUESTION,
HOW DOES ONE GET AT THAT
INFORMATION TO DETERMINE WHAT IS
ACTUALLY QUESTIONED ON THOSE
EXAMS, DO YOU HAVE ANY IDEAS OR
PERHAPS WE CAN THINK AS A GROUP
ABOUT WHERE WE MIGHT BEGIN TO
PROVIDE THOSE RESOURCES OR ASK
FOR THEM?
>> YES, GREAT.
THANK YOU.
WE STARTED WITH A DEEP DIVE OF
WHAT'S AVAILABLE ON THE WEB, SO
THERE IS A SHARED DOCUMENT IN
OUR WORKING SPACE THAT INCLUDES
LINKS TO ALL OF THOSE
ACCREDITING BODIES, LICENSING
BOARDS, JUST TO HAVE KIND OF A
START TO LOOK AT WHAT'S
CURRENTLY AVAILABLE ONLINE IN
TERMS OF RESOURCES AND STUDY
GUIDES THAT ARE OFFICIALLY
PROVIDED FOR STUDENTS AND
TRAINEES WHO ARE ENGAGING IN
THESE DIFFERENT DISCIPLINES, BUT
I AGREE WITH YOU THIS IS
DEFINITELY A CHALLENGE TO GET
INFORMATION.
I CAN SPEAK MORE SPECIFICALLY
FROM A MEDICAL SCHOOL
PERSPECTIVE.
I'M CURRENTLY A FOUNDING FACULTY
AT A NEW MEDICAL SCHOOL AND
WE'RE GOING THROUGH OUR
ACCREDITATION PROCESS.
WE HAVE ACCESS TO THE STANDARDS
AND ELEMENTS THAT ARE CURRENTLY
USED FOR ACCREDITING MEDICAL
SCHOOLS IN THE U.S., AND THAT
CAN BE A HELPFUL STARTING POINT
JUST TO GAIN RECOGNITION AT THAT
LEVEL, WHICH IS AN IMPORTANT
REVIEW AND WAY THAT SCHOOLS ARE
HELD ACCOUNTABLE TO THEIR
CURRICULA.
YES, I'D LIKE TO OPEN TO THE
FLOOR AND TAKE THIS OPPORTUNITY
OF US BEING TOGETHER TO WEIGH ON
BEST PRACTICES FOR GETTING THIS
DATA FROM ALL OF THESE DIFFERENT
STAKEHOLDERS AND I THINK IT'S
IMPORTANT ALSO TO MAKE SURE WE
KEEP NURSING AND THERAPY
STUDENTS IN MIND AS WELL.
THEY ARE AT THE FRONT LINES AND
ARE PLAYING A BIG ROLE IN
EDUCATING PATIENTS.
>> IS THERE A GOVERNING BODY
INVOLVED WITH THAT ACCREDITATION
PROCESS, THE MEDICAL SCHOOL
ACCREDITATION PROCESS?
WE CAN BE THINKING ABOUT THE
ENTITIES THAT WE CAN INVITE TO
OUR FUTURE MEETINGS TO BE ABLE
TO INTERROGATE THEM DIRECTLY AND
HAVE THEM GIVE US INFORMATION.
>> YES, THERE IS, AND ACROSS THE
OTHER DISCIPLINES AS WELL.
I THINK STARTING AT THAT MORE
OFFICIAL INSTITUTIONAL LEVEL
WILL BE KEY.
>> I WAS ASKING, FOR EXAMPLE, IN
YOUR NEW MEDICAL SCHOOL YOU SAID
YOU HAVE ACCESS TO ACCREDITATION
PROCESS.
WHO OVERSEES THAT?
IS THERE AN ENTITY THAT OVERSEES
THAT, THAT WE COULD CONVENE IN
THIS MEETING SPACE?
>> YES, WE COULD CALL THAT BODY
TO PROVIDE THEIR FEEDBACK BUT
ALSO THE SIMILAR OVERSEEING BODY
FOR NURSING AND THERAPIES.
>> OH, YES, OF COURSE.
>> ABSOLUTELY.
>> SO THINKING ABOUT THAT,
ACCME, THERE'S AN OSTEOPATHIC
VERSION ALSO.
BUT THEY ALSO OVERSEE REMOTE
CME, THEY MAY WELL HAVE DATA
THEY COULD DO A KEY WORD SEARCH,
HOW MANY CME CREDITS INVOLVE THE
WORD LYMPHATIC, THEY MAY WELL
HAVE DATA, THAT MIGHT BE A
MEASURABLE THING.
THAT MIGHT BE ACTUALLY LOOKING
AT THAT NUMBER IN TERMS OF
CONSUMERS OF THIS INFORMATION,
THAT MIGHT BE A USEFUL THING.
>> ALSO LONGITUDINALLY.
>> YES.
>> ONE THING TO DOVETAIL, I'LL
MENTION WE DISCUSSED EARLIER THE
IMPORTANCE OF KEEPING CURRENT
WITH THE KNOWLEDGE AND THOUGH
THERE MAY BE SOME EDUCATIONAL
COMPONENTS THAT ARE TALKED ABOUT
LYMPHATICS, IN OUR SPACE, IN THE
THERAPEUTIC AREA, SOMETIMES THAT
LYMPHATIC INFORMATION IS
ACTUALLY OLD INFORMATION.
SO WE NEED TO BE -- IT'S GOING
TO BE AN ADDED CHALLENGE TO JUST
KEEPING EVERYBODY CURRENT,
ANYONE WHO IS GOING TO
CONTINUING EDUCATION COURSE IN
2024 WOULD HOPE TO BE THE
RECEIVING THE MOST UP TO DATE,
SO IT IS A CHALLENGE.
I WANTED TO QUICKLY GO BACK TO
WHAT STEPHANIE HAD BEEN DRIVING
WITH CONNECTEDNESS.
SO FAR IT SEEMS LIKE AND GOING
TO CONTINUE TO SEE THIS WITH
DIFFERENT COMMITTEES, IS THE
IMPORTANCE OF CREATING SOME
LEVEL OF FRAMEWORK THAT MIGHT BE
LARGE AND THEN BREAKS DOWN INTO
CERTAIN AREAS THAT MIGHT BE MORE
SPECIFIC TO SOME OF THE
COMMITTEES, ACCOUNTABILITY THEN
WITH BEING ABLE TO ENSURE THAT
FRAMEWORK WILL BE ABLE TO LIVE
ON BUT SPECIFIC MEASURES OF
SUCCESS, AWARENESS OF IMPORTANCE
TO BE ABLE TO EVEN START TO DIVE
INTO IT, ACCESSIBILITY TO ALL
THE DIFFERENT COMPONENTS WHETHER
ACCESSIBILITY TO SCIENTIFIC
RIGOR SUCH AS EVEN WE WERE
TALKING ABOUT THE FEASIBILITY
WITH ACCESS TO FUNDING OR EVEN
ACCESSIBILITY TO THE EDUCATIONAL
COMPONENT ALL ACROSS DIFFERENT
STAKEHOLDERS, AND THEN
MARKETING, THAT'S A NEW ONE ON
MY AGENDA NOW, IMPORTANCE FOR
MARKING, SOME OF THE QUICK
THINGS I HAVE BEEN DIVING IN FOR
CONNECTIVENESS.
>> ONE MORE COMMENT AND WE'LL
MOVE ON.
>> THANK YOU.
I WANTED TO BRING UP THE IDEA OF
PUBLIC EDUCATION, BEING A
LYMPHATIC PATIENT MYSELF I'M
CONSTANTLY LYMPH-SPLAINING MY
CONDITION, AND OTHER PATIENTS
MAY NOT HAVE THE TOUCH POINT.
TOO IN THE MAINSTREAM PUBLIC
THERE ARE CERTAIN TOUCH POINTS
WITH LYMPHATICS, THERE'S GUASHA,
DRAINAGE, TV SHOWS LIKE MY
600-POUND LIFE WHERE PEOPLE HEAR
ABOUT IT THERE BUT THE DOTS ARE
NOT EXPECTED OR INFORMATION
ISN'T ACCURATE SO WE HAVE TO
CONSIDER -- I KNOW ALL THESE
COMMITTEES ALL BLEED TOGETHER
AND THE PUBLIC WILL HOPEFULLY
GET THE RUNOFF FROM WHAT WE'RE
ACCOMPLISHING BUT I THAT'S A BIG
THING HOW DO WE GET THE PUBLIC
TO UNDERSTAND THIS IS IMPORTANT,
THIS ISN'T JUST AT LEAST IN
LYMPHATIC PATIENTS NOT JUST SOME
SWELLING, YOU KNOW, IT AFFECTS
ALL ASPECTS OF OUR LIVES AND
DESERVES RECOGNITION, TREATMENT
AND CARE, MY TWO CENTS.
>> ARE THERE PSAs DONE?
THAT COULD BE A WAY TO GET
INFORMATION TO THE PUBLIC.
>> SPEAKING FOR LEARN, WE WERE
THE RECIPIENTS OF A GRANT FROM
THE CDC AND THERE'S REALLY BEEN
QUITE A BROAD ADAPTATION OF THE
PSA APPROACH.
IT'S SO CENTERED AT THE MOMENT
ON CANCER-RELATED LYMPHATIC,
IT'S A PIECE OF THE BY AS
OPPOSED TO THE WHOLE PIE BUT
IT'S A START.
>> I THANK THE EDUCATIONAL
IMPERATIVE COMMITTEE FOR THEIR
WORK AND THOUGHTFUL LAYOUT OF
THE NEXT MANY MONTHS.
THAT'S A NEXT TRANSITION TO THE
NEXT GROUP, THE PATIENT TOOLS
COMMITTEE REPRESENTATIVE CAN
TAKE THE PODIUM.
>> GOOD MORNING, EVERYONE.
PATIENT TOOLS COMMITTEE.
OUR VISION STATEMENT IS WE
ENVISION A FUTURE IN WHICH
PEOPLE LIVING WITH LYMPHATIC
DISEASES WILL HAVE ACCESS TO
TOOLS TO OPTIMIZE HEALTH AND
QUALITY OF LIFE, HAVE MEANINGFUL
AND PRODUCTIVE CONVERSATIONS
WITH HEALTH CARE PROVIDERS AND
MEANS TO ADVOCATE FOR THEMSELVES
AND CAREGIVERS TO BE ABLE TO
ADVOCATE FOR PERSONS THEY ARE
GIVING CARE.
THERE ARE SOME TOOLS OUT THERE
BUT ALL PATIENTS DON'T HAVE
KNOWLEDGE TO OR ACCESS TO THAT
INFORMATION SO HOW DO YOU LOOK
AT THE PATIENT'S NEEDS, NOT ONLY
WITH THE INFORMATION THAT THEY
NEED BUT ALSO THE TYPE OF ACCESS
THEY NEED BECAUSE EVERYONE MAY
NOT BE COMPUTER SAVVY TO GO
ONLINE TO GET THAT INFORMATION
SO HOW ARE WE GOING TO GET
INFORMATION TO PATIENTS IN TERMS
OF THERAPIES OUT THERE AND HOW
TO MANAGE THEIR LYMPHATIC
DISEASE.
NEXT SLIDE PLEASE.
SO, THE WHY.
SO, THIS GROUP EXISTS TO EDUCATE
AND EMPOWER ALL PEOPLE LIVING
WITH LYMPHATIC DISEASE TO
OPTIMIZE HEALTH AND QUALITY OF
LIFE AND IT'S IMPORTANT BECAUSE
THERE'S LIMITED AWARENESS OF
LYMPHATIC DISEASE, SOME PEOPLE
MAY HAVE IT AND DON'T KNOW THAT
THEY HAVE IT.
AND GENERAL PUBLIC HAS LITTLE
KNOWLEDGE ABOUT LYMPHATIC
DISEASE.
ALSO, SO PATIENTS HAVE A WAY TO
ADVOCATE FOR THEMSELVES.
AS A PATIENT I'VE BEEN HAVING
LYMPHATIC DISEASE FOR OVER 20
YEARS.
I'VE HAD TO JUST LEARN HOW TO
NOT ONLY MANAGE IT BUT ALSO
ADVOCATE WHEN I'M IN FRONT OF
PROVIDERS, LIKE EMERGENCY ROOM
VISITS, WHEN I'VE HAD
CELLULITIS, AND SO FORTH, AND
JUST KNOWING WHAT'S GOING ON
WITH MYSELF AND HOW TO EXPLAIN
TO THE PROVIDER THAT'S IN FRONT
OF ME WHAT'S GOING ON BECAUSE
THEY MAY HAVE LIMITED KNOWLEDGE
ABOUT LYMPHATIC DISEASE.
THE WORK CONNECTS TO THE NCLD
VISION BECAUSE THE STATEMENTS
ARE THE ULTIMATE BENEFICIARIES,
NEAT TO SUPPORT AND AND A HALF
GREAT CRITICAL CHALLENGES FOR
THEIR HEALTHCARE.
NEXT ONE PLEASE.
SO HOW.
WE MUST BETTER UNDERSTAND WHAT
THE PATIENT NEEDS FOR THEIR
EDUCATION, HOW TO BEST DELIVER
THAT INFORMATION AND I TOUCHED
ON THAT A MINUTE AGO.
EVERYONE LEARNS DIFFERENTLY AND
HAS DIFFERENT ACCESS SO HOW ARE
WE GOING TO GET THE PERSON THAT
IS NOT ONLINE OR THE PERSON
WHOSE PROVIDER DOESN'T HAVE MUCH
KNOWLEDGE HOW ARE WE GOING TO
GET INFORMATION ON HOW A PATIENT
BEST MANAGES THEIR LYMPHATICS
DISEASE, WHAT THEY ALREADY HAVE
ACCESS TO AND BARRIERS.
TO INCORPORATE THE WORK ALREADY
ACHIEVED, WE WILL LEVERAGE
RESOURCES AND MATERIALS ON
PATIENT ADVOCACY GROUPS, SOME OF
THOS ADVOCACY GROUPS MAY BE NIH,
NSF, AND SO ON.
STATE DEPARTMENTS OF HEALTH,
VERY NEW TO ME, DURING THIS
EFFORT.
SOME STATE DEPARTMENTS OF HEALTH
HAVE A LOT OF INFORMATION ON
THAT LYMPHATIC DISEASES ON THEIR
WEBSITE.
SOME DO, SOME DON'T.
AND WE'RE LOOKING INTO WHAT
INFORMATION IS ALREADY OUT
THERE, AND WHAT THEIR NEEDS ARE.
EVERY STATE DOESN'T HAVE THE
SAME THING.
SO WHEN YOU GO TO NEW YORK YOU
GET INFORMATION ON LYMPHATIC
DISEASE, HOW TO BEST MANAGE IT,
BUT PROBABLY IN NEW JERSEY,
DEPARTMENT OF HEALTH, YOU DON'T
FIND ANYTHING THERE.
HOW CAN WE BEST CENTRALIZE THAT
INFORMATION ON DIFFERENT STATES
DEPARTMENT OF HEALTH AND OTHER .
NEXT SLIDE.
BARRIERS.
FOLLOWING UNKNOWNS PROHIBIT
SUCCESS.
ECOSYSTEM OF LD, HOW TO BUILD
FOR DIVERSITY OF LEARNING
STYLES, VIDEO, LARGE TEXT FOR
VISUALLY IMPAIRED, AND SO FORTH,
WHAT PLATFORMS REACH THE MOST
PEOPLE AND THOSE NOT ON
PLATFORMS.
WE HAVEN'T TOUCHED ON THE
ECOSYSTEM AND ENSURING LIKE
ACCESS, CREATING DATABASES AND
REGISTRIES, THE NEED TO DO THAT.
FOLLOWING KNOWN ISSUES COULD
STAND IN OUR WAY, HOW TO BUILD
OR EQUIP PEOPLE WITH TOOLS WHO
DON'T EVEN KNOW THEY ARE PART OF
THE ECOSYSTEM.
WE TOUCHED ON THESE IN OUR
CONVERSATIONS A WHILE AGO,
MARKETING CAMPAIGNS, PUBLIC
TRANSPORT, THERE'S ALSO LACK OF
FUNDS, CONNECTIONS ALREADY MADE
PREVIOUSLY, PATIENT COMPLIANCE,
MANUFACTURERS WITH CONTINUED
INTEREST AND WHO IS GOING TO
CONTINUOUSLY MONITOR AND UPDATE
THESE TOOLS AS RESEARCH
ADVANCES.
NEXT SLIDE.
SO THE HOW.
WE NEED TO CONSIDER PERSPECTIVES
OF THE FOLLOWING GROUPS, LD
PATIENT COMMUNITY, PATIENT
ADVOCACY LEADERS, EDUCATORS,
PUBLIC HEALTH EXPERTS,
PHYSICIANS, MENTAL HEALTH
EXPERTS, A LOT OF TIMES YOU
FORGET THAT COMPONENT AND HOW IT
AFFECTS PEOPLE LIVING WITH
LYMPHATIC DISEASE.
ALSO RESEARCHERS, ANALOG DISEASE
GROUPS WHO HAVE SUCCESSFULLY PUT
EFFORTS FORWARD THAT HAVE BEEN
EFFECTIVE.
NEXT █SLIDE.
THERE WE GO.
PRIMARY CARE AND EMERGENCY
DEPARTMENTS, SOCIAL WORKERS,
HOLT HEALTH CARE PROVIDERS,
VASCULAR DOCTORS,
ENDOCRINOLOGISTS, HEALTH
INSURANCE COMPANIES AND CMS.
SO BASICALLY THE GROUPS
AFFECTED, AND THEY HAVE LIMITED
KNOWLEDGE ABOUT LYMPHATIC
DISEASES SO PROVIDING THEM WITH
EDUCATION IN THAT REGARD.
NEXT.
NEXT SLIDE.
WE MISSED THE PLAN FOR THE NEXT
YEAR.
STEPHANIE, DO YOU HAVE THAT?
>> I DON'T THINK I DO.
>> IS THAT PART OF THAT?
OVER THE NEXT YEAR WE PLAN TO
LOOK INTO WHAT TOOLS ARE
CURRENTLY AVAILABLE, AND WHAT
THE NEEDS ARE AND IDENTIFY THE
GAPS.
THERE ARE TOOLS AVAILABLE I
STARTED A LIST FOR WHICH I'LL
SHARE, AND ADVOCACY GROUPS AND
OTHER STATES AND OUR
ORGANIZATIONAL WEBSITES.
THAT'S PRETTY MUCH IT.
>> DO YOU WANT TO DO ONE LAST
SLIDE?
YOU HAVE YOUR PLAN HIGHLIGHTS.
>> ALL RIGHT.
WHERE WE ARE NOW IS WE'RE IN THE
STAGE OF AUDITS WHERE WE'RE
LOOKING AT EXISTING PATIENT
TOOLS AND WAYS OF EXPANDING
DEFINITION OF ECOSYSTEM LOOKING
FORWARD TO FALL OF NEXT YEAR,
CREATING INTERIM REPORT, AND
FINALIZING THAT.
SEEING IF THERE'S A NEED TO
ADJUST THAT, WHICH WE SHOULD
HAVE THEM TODAY AT THE SESSION,
IDENTIFYING PLATFORMS AND
FORMATS WE'LL USE, ALSO CRAFTING
RECOMMENDATIONS FOR FURTHER
RESEARCH, ANALYZING AUDIT REPORT
FINDINGS, IDENTIFYING GAPS IN
INFORMATION, REPORTING ISSUES
WE'RE LEARNING IN OUR TOWN
HALLS, SO WHEN WE DO A TOWN HALL
SPEAKING TO PATIENTS AND
HEALTHCARE PROVIDERS ABOUT SOME
OF THE CHALLENGES AND THEIR
NEEDS, ONE THING BROUGHT UP
PREVIOUSLY IS NUTRITION AND HOW
I THINK WE HAVE INCLUDED THAT IN
THE CONVERSATION AND HOW THAT
MAY BE AFFECTING LYMPHATIC
DISEASE AND THEN IN SEPTEMBER
WE'LL WRATH UP WITH OUR FINAL --
WRAP UP WITH OUR FINAL REPORT
PRESENTED.
>> THANK YOU FOR REPRESENTING
THIS GROUP.
IN THIS CASE WE'LL OPEN THIS UP
TO FEEDBACK FROM THE ROOM BUT I
WANT TO POINT OUT THIS COMMITTEE
IS VERY HUNGRY FOR LEARNING,
RIGHT?
THEY HAVE OUTLINED STAKEHOLDERS
GROUPS WHERE THEY REALLY DO NEED
INFORMATION.
THIS IS A VERY CONNECTED AND
VERY WELL NETWORKED COMMITTEE SO
I WOULD JUST LIKE TO ENCOURAGE
EVERYONE TO THINK ABOUT WHO YOU
KNOW THAT YOU MIGHT WANT TO
CONNECT WITH THIS GROUP SO THEY
CAN PURSUE THEIR LEARNING PLAN.
AND WITH THAT I'LL OPEN IT UP TO
FEEDBACK FROM THE ROOM ON WHAT'S
WORKING, WHAT BUILDS WE HAVE AND
WHAT CONNECTION.
>> YEAH AS A SCIENTIST I'M
CURIOUS FROM PERSPECTIVE OF THE
PATIENTS, FROM MY VIEW IN THE
LAST, I DON'T KNOW, 25 YEARS, WE
HAVE BETTER MARKERS, ANIMAL
MODELS, WE KNOW GENES ARE
IMPORTANT.
I WONDER HOW THIS TRANSLATED IN
THE PATIENT SIDE.
I GUESS MAYBE DIAGNOSIS IS
BETTER, THIS IS THE GENE YOU MAY
HAVE AFFECTED AND THINGS LIKE
THAT, BETTER TOOLS, BETTER
COMPREHENSION MAYBE.
FROM THE TREATMENT SIDE, THE
TREATMENTS THAT THEY USE TODAY
ARE PROBABLY THE SAME USED 25
YEARS AGO, MASSAGE, GARMENTS,
THINGS LIKE THAT.
FROM THAT SIDE IT HASN'T BEEN
TRANSLATED WHAT WE LEARNED IN
THE LAB TO THE PATIENT SIDE AND
MAYBE THAT'S WHERE WE NEED TO
TRY TO FIGURE OUT WHY.
WHY HAS IT HAPPENED?
MAYBE USING ANIMAL MODELS STILL
THAT ASPECT IS STILL VERY
LIMITED SO WE KNOW THERE ARE
THINGS THAT MAY PROMOTE GROWTH
BUT THERE'S SOME COLLEAGUES
USING VARIOUS THINGS TO PROMOTE
GROWTH, LIKE DIETS, THERE'S A
HUGE GAP THERE, BUT LET'S FACE
IT IN THE SCIENTIFIC SIDE WE
NEED TO LEARN MORE, BETTER FIND
OUT HOW TO IMPROVE OR TREAT
THESE KIND OF CONDITIONS.
THIS IS AN ASPECT IS OF THAT IS
VERY IMPORTANT, TO FIGURE OUT
HOW TO QUICKLY TRANSLATE
FINDINGS FROM THE LAB TO YOUR
SIDE BECAUSE NOTHING HAS
CHANGED.
THAT'S MY VIEW.
>> I WONDER IF THERE'S A WAY TO
APPROACH FROM THE CMS SIDE.
I HAVE NO IDEA WHAT IS BILLABLE
AND THAT SEEMS TO DRIVE WHAT
HAPPENS IN THE EXAM ROOM.
IS THERE A CODE TO BILL FOR 30
MINUTES OF PATIENT EDUCATION
WHEN A PATIENT IS GOING THROUGH
CANCER TREATMENT, SOMEONE WILL
TELL THEM YOU MIGHT ENCOUNTER
LYMPHATIC, -- LYMPHEDEMA, THIS
IS WHAT YOU NEED TO LOOK FOR, OR
GENETICS, TO BEG AND PLEAD TO A
PLACE IN THE UNITED STATES THAT
CAN DO THAT TYPE OF TESTING.
>> THE SHORT ANSWER IS NO.
>> NO?
SO HOW CAN WE --
>> AND FUNDAMENTALLY CO--CALLED
COGNITIVE MEDICINE WHICH REALLY
IS WHERE THIS FALLS IS VERY
UNDERREIMBURSED COMPARED TO
PROCEDURAL MEDICINE, SO THE
FAMILY PRACTITIONERS, PRIMARY
CARE PHYSICIANS, INTERNAL
MEDICINE SPECIALISTS ARE GOING
TO ABBREVIATE INTERACTIONS
BECAUSE THEY DON'T GET MUCH FOR
THAT.
>> FIFTEEN YEARS AGO DID I A
PRESENTATION, I DUG UP HOW YOU
GET A CODE.
THERE'S A PANEL OF PEOPLE AT
CMS, OUTSIDE PEOPLE LIKE AETNA
AND WHATEVER, IF WE CAN FIGURE
OUT A WAY TO INFILTRATE THAT
PROCESS AND PUT OUR TWO CENTS IN
WE COULD --
>> WE ARE HOPING TO INVITE AT
SOME POINT CMS TO DIALOGUE WITH
US HERE AT PART OF THIS
COMMITTEE AND I THINK WE HAVE A
LOT OF QUESTIONS FOR THEM BUT I
THINK IT WOULD BE INTERESTING TO
KNOW.
MY UNDERSTANDING IS THE BROAD
PROBLEM IS THERE'S A LIMITED POT
OF MONEY AND IF YOU REALLOCATE
IT TO A NEW RECIPIENT THEN
YOU'RE TAKING IT AWAY FROM
SOMETHING ELSE.
WE HAVE TO FIGURE OUT WHAT THE
PROCESS IS, HOW WE CAN PITCH IN
AND DO THAT.
>> RESPONDING TO THE INVITE TO
SHARE SOME THINGS THAT MAY WORK,
FROM OUR EXPERIENCE AT THE
HEART, LUNG AND BLOOD INSTITUTE
WE FOUND THAT YOU CAN INCREASE
THE REACH TO PATIENTS WHO ARE
NOT ON PLATFORM SO THEY MAY NOT
HAVE ACCESS OR DON'T WANT TO
TALK TO PRACTITIONERS, BY FAITH
ORGANIZATIONS, BY OTHER WAYS,
TRUSTED PARTNERS IN THE
COMMUNITY.
FOR INSTANCE THERE WAS A LOT OF
SUCCESS WITH CONTROLLING
HYPERTENSION THROUGH
BARBERSHOPS, RIGHT?
MEN MAY NOT WANT TO GO AND ASK
THE DOCTOR BUT WILL LISTEN TO
THEIR BARBER AND MAY HAVE BLOOD
PRESSURE MEASURED, WE FUNDED
STUDIES LOOKING AT WHAT MAY WORK
IN TERMS OF PATIENT EDUCATION
AND THOSE ARE DIFFERENT TYPES OF
TOOLS THAN YOU WOULD HAVE
ONLINE.
AND THEY HAVE TO BE SPECIFICALLY
TAILORED TO THAT COMMUNITY.
>> JUST A QUICK POINT OF
CLARIFICATION, WITH PATIENT
TOOLS, IS THAT ALSO
COMPREHENSIVE OF JUST THE OTHER
TYPES OF TOOLS THAT CAN BE
UTILIZED IN CLINIC SPACE?
BEDSIDE, SO GOING FROM HEAVILY
EXPENSIVE BUT INVASIVE TYPE
OPPORTUNITIES, DRILLING DOWN,
AND WITH THAT THEN IT TAKES TIME
BUT INDUSTRY IS GOING TO BE A
GREAT ONE TO BRING INTO IT.
BIOSPECTROSCOPY IN THE UNITED
STATES IS NOT AVAILABLE SADLY
BUT THERE'S A NEW CPT CODE FOR
CLINICIANS UNDER CERTAIN
CIRCUMSTANCES, LIMITED ACCESS
BUT THAT'S CONTINUED TO GROW AND
BEING PUSHED BY THE INDUSTRY
SIDE BECAUSE THEY HAVE A REASON
AND MOTIVATION TO HELP WITH THAT
DID YOU BUT THERE'S DIFFERENT
OPPORTUNITIES.
>> YOU MADE ME THINK OF
SOMETHING WITH THE HELP.
WITH THE HYPERTENSION.
I KNOW PEOPLE WHO WORK IN CLINIC
ASSOCIATED WITH LARGE AMAZON
DISTRIBUTION CENTERS, THOUSANDS
OF PEOPLE WORKING 24-HOUR
SHIFTS, THEY DON'T SLEEP
PROPERLY, THERE'S UNTREATED
HYPERTENSION SEEN THERE BECAUSE
THESE PEOPLE ARE WORKING
PHYSICAL JOBS BUT DEFINITELY IF
YOU HAD A LYMPHATIC DISEASE YOU
MIGHT BE DRIVEN TO COME IN,
THERE ARE INFORMATIONAL TOOLS
ABOUT HYPERTENSION AVAILABLE IN
THOSE.
AMAZON HAS A STRONG INTEREST IN
CONTROLLING WHAT HAPPENS FOR
EVEN BUSINESS REASONS BUT
IMAGINE THAT WE COULD ALSO
PROVIDE EDUCATIONAL MATERIALS AT
THAT TYPE OF CLINIC, BUT
EVERYBODY IS CONNECTED TO AMAZON
IN SOME WALES.
IF YOU CAN USE THAT AS A TOOL
FOR EDUCATION IT WOULD EVEN BE
BROADER.
>> FOLLOWING UP, ONE PROBLEM WE
ALSO FACE HERE IS THE INTEREST
OF BIOTECH BIOTECH IS A DRIVER
AND WE HAVEN'T CONVINCED BIOTECH
THAT THIS IS A MARKET.
THAT'S A SERIOUS PROBLEM.
AND HOW TO DO IT, HOW TO CHANGE
IT I THINK IS SOMETHING WE NEED
TO SERIOUSLY THINK BECAUSE THE
FEW REPORTS I KNOW PEOPLE THAT
FOUND SOMETHING AND STARTED
THEIR OWN COMPANY, VERY
DIFFICULT TO MOVE FORWARD
QUICKLY AND EFFECTIVELY, SO IN
OUR CASE FOR EXAMPLE WE THOUGHT
WE HAVE A BIOMARKER, I DON'T
KNOW WHAT 400 BIOTECH COMPANIES
WERE APPROACHED, NONE SHOWED ANY
INTEREST, BECAUSE, AGAIN, THE
MARKET IS SMALL, THEY DON'T FEEL
THERE'S A VALUE ON THOSE KIND OF
THINGS.
SO I THINK THAT'S A MAJOR
CHALLENGE, WE NEED TO INVOLVE
BIOTECH BUT CONVINCE THEM THIS
IS FROM THE MONEY POINT OF VIEW
IS A GOOD MARKET.
I THINK THAT IT'S SOMETHING THAT
WE NEED TO FIND A WAY HOW TO DO
IT.
>> THERE MAY BE AN INDIRECT WAY
AROUND IT.
THE MAJOR IMPEDIMENT WAS THAT
THE INVESTMENT TO COMMERCIALIZE
THE ASSAY COULD NOT BE
ADEQUATELY PROTECTED BECAUSE
IT'S A NATURALLY OCCURRING
PROTEIN AND SO FORTH BUT IF YOU
ENERGIZE THE PATIENT COMMUNITY
SUFFICIENTLY THROUGH EDUCATION
TO SAY I WANT TO BE SCREENED FOR
LYMPHEDEMA, WHY CAN'T YOU DO
THIS BLOOD TEST, THAT REVERSE
BUBBLING UP HAS WORKED IN HIV
AND BREAST CANCER, WHERE
ACTIVISM WITHIN THE PATIENT
COMMUNITY COULD ACTUALLY EXERT
CHANGE EVEN WHEN THE COMMERCIAL
INTERESTS ARE NOT AS PROFOUND.
>> HOW CAN WE ACCOMPLISH THAT?
>> I THINK THROUGH EDUCATION OF
THE COMMUNITY, THROUGH AFFECTED
PATIENT COMMUNITY AND MORE
BROADLY OF THE COMMUNITY AT
LARGE SO IT'S COMING AT IT THE
OTHER WAY.
I THINK WE NEED TO LEVERAGE
PATIENTS TO EDUCATE THEIR
HEALTHCARE PROVIDERS ON THE
LEVEL OF IGNORANCE WHICH THEY
ARE CURRENTLY WORKING.
IT'S THE SAME PROCESS OF MAKE
THEM LEARN WHAT THEY DON'T THINK
THEY WANT TO KNOW IS
FUNDAMENTALLY THE CONCEPT.
>> I WAS GOING SAY I WONDER IF
THE OPPORTUNITY BECAUSE THE
PATIENTS WILL BE THE MOST VOCAL
MOST LIKELY TO BE PAID ATTENTION
TO AS WE SORT OF EMPOWER THE
PATIENT POPULATION TO GET LOUD
REALLY ABOUT THE THINGS GOING
ON, IT'S REALLY IMPORTANT TO
MAKE SURE THAT WE ARM THEM WITH
THE BEST INFORMATION TO SAY YOU
ARE THE ONES WHO SHOULD BE
ADVOCATING THAT THERE'S BETTER
TREATMENT AND DIAGNOSTICS NEED,
TO GUILLERMO'S POINT WE DON'T
KNOW THE WAYS LYMPHATIC DISEASE
COULD BE AFFECTING THINGS.
NOT JUST THE PATIENT SIDE, HEY,
MAYBE MY HEART DISEASE, NO ONE
KNOWS WHAT'S GOING ON, COULD BE
LYMPHATIC, THAT'S GOING TO BE
WITHIN THE PATIENT POPULATION, A
POPULATION IN GENERAL WHEN THEY
GET LOUD MAY BE LIST ENED TO.
>> THE QUESTION GUILLERMO WAS
ASKING HOW THE PATIENTS ARE
GETTING INFORMATION WHEN CERTAIN
TREATMENTS ARE AVAILABLE.
FROM MY EXPERIENCE, WE'RE NOT.
LIKE WHEN I RESEARCHED MYSELF
DIFFERENT TREATMENTS OR WHAT
TREATMENTS ARE AVAILABLE FOR
LYMPHATIC, I FOUND THAT
ACUPUNCTURE WAS ONE THING BEING
INVESTIGATED, I WENT AND I DID
ACUPUNCTURE.
AND THEN I FOUND OUT THAT THERE
WERE ADVANCES WITH LYMPH NODE
TRANSFER, AND LIPOSUCTION, AND
SO I LOOKED INTO THAT.
I FOUND OUT, OH, THERE ARE EVEN
DRUGS BEING USED.
WHY AM I NOT GETTING THIS
INFORMATION?
WHY AM I HAVING TO SEARCH?
I'M NOT SEARCHING EVERY DAY,
LIKE PERIODICALLY EVERY FEW
YEARS, WHAT NEW ADVANCES IN
LYMPHEDEMA?
IT WAS LIFE-CHANGING FOR ME
GETTING THIS INFORMATION, LIKE
MY LYMPHATIC ARM IS SMALLER THAN
MY OTHER ARM THAT HASN'T BEEN
AFFECTED, AND THIS IS 20+ YEARS
IN THE MAKING.
I KNOW THERE'S SO MUCH
INFORMATION OUT THERE.
I DON'T KNOW MANY PEOPLE WITH
LYMPHEDEMA BUT IF I DID I WOULD
PASS THAT INFORMATION ALONG.
I DON'T THINK IT'S THAT PATIENTS
AREN'T EXCITED ABOUT SCREENING.
WE NEED THIS.
IT'S JUST THAT PATIENTS DON'T
KNOW WHAT'S AVAILABLE ALL THE
TIME.
>> TRYING TO CONNECT THREADS TO
GET A TRIPLE-WORD SCORE.
THE ONLY THING LESS RELIABLE
THAN THE INTERNET, WHAT'S GOING
TO WORK, IS ASKING A RESEARCH
INVESTIGATORS.
WITH ALL DUE RESPECT TO MY
COLLEAGUES ALL OF US BELIEVE THE
THING WE'RE STUDYING IS THE
UNIFYING THEORY OF EVERYTHING
AND IS THE POST IMPORTANT
MOLECULE.
THERE'S A SENSE IN WHICH A
DIRECT-TO-CONSUMER SCIENCE
PIPELINE SOMETIMES MAY NOT BE
THE BEST SOLUTION BUT THE
QUESTION IS HOW DO YOU EVALUATE
WHAT IS READY TO EDUCATE THE
PUBLIC IN, RIGHT, AND THE USER
IN?
IF WE SAY TO CYNTHIA WE'RE GOING
TO EDUCATE YOU ON LYMPHATIC
DISEASES, ALL OF IT, THAT'S TOO
MUCH.
AND THERE'S FRANKLY TOO MUCH IN
THE LANDSCAPE.
THE QUESTION IS WHAT'S READY?
AND SO IF YOU HAVE DONE WORK
WITH NASA OR DEPARTMENT OF
DEFENSE ON DEVELOPMENT OF
TECHNOLOGY THEY HAVE SOMETHING
CALLED TECHNOLOGY READINESS
LEVEL, TRL.
THAT SPEAKS TO WHERE IT IS IN
THE PIPELINE FROM INCEPTION TO
THIS THING IS READY TO GIVE THE
ARMY A MILLION OF THESE THINGS
AND THESE ARE RUGGED THINGS AND
I WONDER IF SOMETHING SIMILAR
FOR IDEAS OR INTERVENTIONS
COULDN'T BE DONE HERE BECAUSE IF
THERE'S SOMETHING THAT HAS LIKE
AN IDEA OR INTERVENTION OR
BIOMARKER READINESS LEVEL OF
SCALE 0-10, CALL IT 2, WHICH IS
WHERE THE ALZHEIMER'S THING IS
RIGHT NOW, RIGHT?
WE'RE WAY EARLY IN THE PROCESS.
THAT'S SOMETHING THAT YOU CAN
GET PEOPLE EXCITED ABOUT BUT
THEY SHOULDN'T BE TALKING TO
CLINICIANS ABOUT IT.
WE'RE DECADES FROM THAT.
NOT DECADES, WE'RE MANY YEARS
FROM THAT.
IF YOU HAVE A BIOMARKER THAT'S
PROMISING AN INNATE, IT'S
MISSING COMMERCIALIZATION,
BECAUS IT'S AN 8, IT'S SOMETHING
CLINICIANS COULD BE EDUCATED
AND PATIENTS EXCITED ABOUT.
IF WE HAD ABILITY TO ATTACH A
READINESS LEVEL IT WOULD HELP US
KNOW A READY WIN, AN EASY WIN,
SOMETHING YOU COULD GET LEVERAGE
IN VERSUS SOMETHING MORE
ASPIRATIONAL.
>> REBECCA?
>> THANK YOU.
I WANTED TO CHIME IN ON
READINESS LEVELS AND READY FOR
PRIME-TIME INFORMATION, ONE
IMPORTANT THING TO CONSIDER IS
A.I. AND ACCESS TO INFORMATION
AND HOW THAT'S TRANSFORMING HOW
PEOPLE GET THEIR INFORMATION.
SO, I DON'T HAVE ANY ANSWERS TO
THIS IMPORTANT QUESTION BUT HOW
WILL THE WORK OF THE COMMISSION
TAKE THIS INTO ACCOUNT IN TERMS
OF EDUCATIONAL INITIATIVES AND
PATIENT TOOLS GIVEN THAT A LOT
OF PEOPLE WILL LIKELY SOON HAVE
THAT ON THEIR SMARTPHONE, OTHER
DEVICES AND BE READY USING A.I.
TO ANSWER THEIR QUESTIONS ABOUT
LYMPHATIC SYSTEM AND LYMPHATIC
DISEASES.
>> THE POINT EARLIER ABOUT
IMPORTANCE OF PATIENTS
ADVOCATING, THE LYMPHEDEMA
PATIENTS, THAT'S MY BIAS IN THAT
COMMUNITY, IN THE LIP DEEM A
COMMUNITY, PEOPLE KNOW WHAT THEY
ARE LIVING WITH AND THEY ARE
USUALLY NOT AFRAID TO SPEAK UP,
BUT IT'S THE ONES I'M THE
OPPOSITE OF CYNTHIA, I HAVE
LYMPHEDEMA, I ONE A BLOG IN MY
SPARE TIME, I'M SATURATED.
I HAVE A LOT OF FRIEND IN THE
PATIENT COMMUNITY.
IT'S ALL WE TALK ABOUT.
SO I THINK IT'S KIND OF BRIDGING
THAT SO PATIENTS WHO DON'T HAVE
TOOLS TO EVEN -- THIS IS JUMPING
AHEAD TO COMMUNITY GROWTH LATER
ON, BUT TO KNOW WHAT'S OUT THERE
THAT THERE'S A NON-PROFIT FOR
PEDIATRIC LYMPHEDEMA AND CREATED
A ROADMAP ON THE WEBSITE FOR
FAMILIES TO DOWNLOAD, SHOWS HOW
YOU MOVE THROUGH GETTING A
DIAGNOSIS, GETTING INTO
TREATMENT.
AND I THINK THOSE ARE THE THINGS
I HEAR THE MOST FROM OTHER
PATIENTS, ESPECIALLY NEW ONES,
INTO THE COMMUNITIES, WHERE DO I
EVEN GET TREATMENT?
WHAT IS THE TREATMENT?
I DON'T KNOW WHERE TO START.
IF THEY ARE IN A RURAL AREA,
IT'S EVEN HARDER.
IF WE HAD SOME KIND OF SOURCE OF
TRUTH REPOSITORY, LEARN HAS A
LOT OF GREAT ONCE AT ENTERS OF
EXCELLENCE, LYMPHEDEMA
FOUNDATION, SOMETHING PATIENTS
CAN TRUST THIRST WHERE THEY CAN
GET QUALITY INFORMATION THAT'S
UP TO DATE, WHETHER IT'S READY
OR NOT, WE'D LIKE IT TO BE READY
OF COURSE BUT THEY KNOW THAT'S
WHERE THEY CAN GO TO GET THAT
AND BE EMPOWERED AND BRING THAT
TO CLINICIANS OR THEIR FRIENDS
AND FAMILY TO EXPLAIN BUT IT
INTIMIDATING TO CONFRONT A
MEDICAL PROVIDER, GIVING TOOLS
AND TIPS, UPLOADING TO PATIENT
PORTAL THE STANDARD OF CARE FOR
LYMPHEDEMA AND SOMETHING FOR
THEIR CLINICIANS PERUSE AT THEIR
LEISURE BUT STUFF LIKE THAT
COULD BE HELPFUL.
>> I WANT TO MAKE A COMMENT THAT
IN MY CAREER AS A CLINICIAN,
I'VE WATCHED IN GENERAL THIS
EVOLUTION OF DOCTOR KNOWS ALL
AND YOU SIT DOWN THERE AND YOU
LISTEN, TO ONE IN IT WHICH THERE
IS DIALOGUE, READY FLOW OF
INFORMATION ON THE INTERNET,
OFTEN IT HAS TO BE EVALUATED.
THE GOOD CLINICIANS WILL ENTER
INTO DIALOGUE WITH THEIR
PATIENTS AND SAY I DON'T KNOW
BUT I'M GOING TO FIND OUT, I'M
GOING TO READ THAT PAPER,
WHATEVER IT MIGHT BE.
WHEN WE'RE TALKING ABOUT
DIRECTLY AFFECTED LYMPHATIC
DISEASE COMMUNITY IT'S A
SUBGROUP FAIRLY HABITUALLY
MARGINALIZED AND MAY NOT HAVE
THE SKILL SET OF FINDING OUT WHO
WILL TALK TO THEM AND WHO WON'T.
I DO ENCOURAGE MY PATIENTS TO
RUN AWAY FROM THE DOCTORS THAT
WON'T TALK TO THEM.
IT'S FAR TOO LATE TO NOT BE
DOING THAT AND THAT COULD BE THE
SIMPLEST ELEMENT IN THE
EDUCATION PROCESS FOR THE
PATIENT COMMUNITY, LEARN HOW TO
TALK TO YOUR DOCTOR.
DON'T FEED THEM NECESSARY
INFORMATION, WE'RE TOO EARLY
FOR THAT BUT FEED THEM THE SKILL
SET TO GET TO THE CLINICIANS
WHAT THEY NEED.
>> WE WANT TO ROOT OUR PATIENT
TOOLS IN THE NOW, ACTIVE WAYS
PATIENTS AFFECTED BY THESE
DISEASES ARE MARGINALIZED OR
TREATED, TO ACKNOWLEDGE THERE'S
TREMENDOUS POWER IN PATIENT
ADVOCACY FOR THINGS COMING DOWN
THE PIPELINE.
DO YOU THINK IT'S POSSIBLE AS WE
DEVELOP TOOLS TO
COMPARTMENTALIZE THINGS READY
FOR PRIME TIME AND YOU SHUN
ADVOCATING FOR AND ALSO HERE ARE
THINGS GOING ON IN THE RESEARCH
COMMUNITY, NOT NECESSARILY THE
NITTY-GRITTY OF ALL THE UNIVERSE
BUT JUST SO YOU KNOW PEOPLE ARE
LOOKING FOR THIS, NOT TO TAKE TO
CLINICIAN NOW BUT EMPOWER THE
PATIENT POPULATION, THERE'S A
LOT OF STUFF GOING ON, NOT A
RIGHT-NOW THING BUT WE NEED TO
EMPOWER RESEARCHERS BECAUSE IT
COULD BE A TOMORROW THING AND
SEGREGATE, IS THERE A WAY TO DO
THAT?
>> I THINK THE PATIENT GETS
EXCITED TO KNOW PEOPLE ARE
PAYING ATTENTION IN THE IVORY
TOWERS OF RESEARCH AND
EVERYTHING.
THEY ARE SO ACCUSTOMED TO FEEL
SHUFFLED.
I WASN'T DIAGNOSED UNTIL 14 AND
I WAS BORN IF IT.
FROM BALTIMORE, MY PARENTS TOOK
ME TO HOPKINS AND THEY DIDN'T
KNOW WHAT IT WAS.
WE ALL HAVE THE SAME STORY, ONE
WAY OR ANOTHER.
PATIENTS ARE THE HYPE GIRLS AND
GUYS FOR RESEARCH COMING OUT FOR
SURE.
>> I THINK ONCE PATIENTS KNOW
ABOUT THE TOOLS AND HAVE THE
TOOLS, THEY WILL GO TO SEEK OUT
THE INFORMATION AND SEE WHAT'S
ON THE HORIZON AND WHAT'S
AVAILABLE.
FROM MY EXPERIENCE IT WOULD BE
BEEN GREAT TO BE PART OF A
REGISTRY WHERE IF THERE'S SOME
TYPE OF STUDY BEING DONE I'M
ASKED TO PARTICIPATE.
I WANT TO HELP ADVANCE THE
SCIENCE, TO HELP MY OWN DISEASE.
SO WHY AM I NOT AWARE OF THIS?
WHY AM I NOT AWARE OF HAVING
LYMPHEDEMA OVER 20 YEARS THERE'S
SURGERIES, MEDICATIONS
AVAILABLE, NOT JUST MANUAL LYMPH
DRAINAGE AND WRAPPING AND
BANDAGING.
AND I HAD TO SEEK THAT OUT ON MY
OWN, THANKFULLY I'LL READ A
RESEARCH PAPER, IF IT'S ABOUT
THE RESEARCH, LIKE I'LL GO
THROUGH AND READ IT.
BUT WHO DOES THAT?
WHO IS GOING TO ACTUALLY GO
THROUGH THAT?
WHAT AVERAGE PERSON IS GOING TO
DO THAT?
NOT MANY.
HAVING A WAY PROVIDERS HAVE AT
LEAST SOME INFORMATION.
OKAY, I DON'T DON'T KNOW MUCH
ABOUT THIS DISEASE BUT YOU CAN
GO HERE TO FIND OUT MORE
INFORMATION.
>> I'M SORRY TO CUT PEOPLE OFF
BUT WE NEED TO STAY ON SCHEDULE.
I'M GOING TO TAKE US TO BREAK.
THANK YOU, PATIENT TOOLS
COMMITTEE, FOR YOUR INSPIRING
WORDS AND STARTING A STIMULATING
CONVERSATION THAT'S VERY HARD TO
STOP.
WE'LL SEE EVERYONE BACK IN 13
MINUTES
>> I'M A PRIME LYMPHEDEMA
PATIENT.
THE PATIENT COMMUNITY IS VERY
ACTIVE BUT THERE IS A LOT OF
PATIENTS WHO DON'T KNOW THE
COMMUNITY IS EVEN THERE.
SO I'M GOING TO SPEAK -- I SPEAK
FROM THAT PATIENT ASPECT,
JEFFREY IS MORE THE RESEARCH
ASPECT.
WE TALK IN PREVIOUS MEETINGS HOW
LYMPHATIC DISEASE POPULATION IS
FRAGMENTED, AND EVEN FURTHER
ABOUT ALIGNMENT.
THE VISION STATEMENT TO EXPAND
AND CONNECT COMMUNITIES MATCHING
SIZE AND VOICE TO BURDEN SO
INTEGRATED COMMUNITY CAN BE MORE
EFFECTIVE.
MEANS MAY BE MORE SEPARATE.
THE WHY, SO THIS GROUP EXISTS TO
EXPAND AND CONNECT COMMUNITIES,
CRITICALLY IMPORTANT BECAUSE
WHEN THE SIZE AND VOICE OF OUR
INTEGRATED COMMUNITY MATCHES THE
BURDEN WE CAN BE MORE EFFECTIVE
IN DRIVING CHANGE ACROSS ACCESS
TO CARE, FUNDING FOR RESEARCH,
CROSS-POLLINATION OF IDEAS AND
BETTER PATIENT SUPPORT.
THE WORK CONNECTS TO THE NCLD
VISION AND CHARGE WHEN GROUPS
ARE FOCUSED ON THE SAME GOALS
WILL BETTER ADDRESS CRITICAL
CHALLENGES IN THE SCIENTIFIC
REEL THE.
ASPIRATION TO PROVIDE A CLEAR
ROADMAP BETWEEN THE PRESENT
STATE AND WHERE THE CRITICAL
CHALLENGES IN ACCESS TO CARE,
PRACTICE, ADVANCEMENT, PUBLIC
EDUCATION AND ADVOCACY ARE
OVERCOME.
WE'LL MEASURE OUR SUCCESS BY
TRACKING THE USAGE OF TERM
LYMPHATICS ACROSS DOMAINS.
NEXT SLIDE PLEASE.
THE HOW, THE LEARNING PLAN, TO
ENSURE CONSIDERATION WE MUST
BETTER UNDERSTAND NAMES AND
LEADERS OF GROUPS TO UNIFY,
VISIBLE AND OVER THE HORIZON
GROUPS TO CONNECT OR BE
MOTIVATED, TO IDENTIFY
CHALLENGES AND BARRIERS, AND
INCORPORATE THE WORK ALREADY
ACHIEVED WE WILL LEVERAGE NIH
AND NCLD CONNECTIONs AND TAKE
ADVANTAGE.
THERE'S A LOT OF BARRIERS.
THE FOLLOWING ITEMS COULD
PROHIBIT OUR SUCCESS.
WHY THESE GROUPS ARE NOT
CONNECTED, WHAT COULD CAUSE THEM
TO BE CONNECTED, ECOSYSTEM,
KNOWN ISSUES ARE LACK OF
INCENTIVES TO GET INVOLVED, LACK
OF KNOWLEDGE OVERALL ON
LYMPHATICS, PATIENT AND
CAREGIVER GROUPS THAT MAY NOT
COMMUNICATE WITH ONE ANOTHER SO
FRAGMENTATION EXISTS AND
COMPETITION FOR RESEARCH
ATTENTION AND FUNDRAISING.
NEXT SLIDE PLEASE.
THE HOW, INCLUSIVE ACTION, WE
NEED TO CONSIDER PERSPECTIVES OF
LEADERS OF ORGANIZATIONS,
MOTIVATIONS FOR SENIOR
RESEARCHERS TO GET INVOLVED,
YOUNGER POSTDOCS TO GET INVOLVED
IN CAREERS AND PEOPLE WHO NEED
TO BE CONSOLIDATED VERSUS
RECRUITED CONSIDERING SDOH,
MAJOR DONORS, AND REQUIRED
SUPPORT OR INPUT FROM DIFFERENT
ORGANIZATIONS AND TEAMS SUCH AS
NIH AND NHLBI AND PATIENT AND
ADVOCACY GROUPS, LEARN, LAM, ET
CETERA.
>> SKIPPING TO THE NEXT, WE'LL
GET YOU IN AFTER THIS COMMITTEE.
SOUND GOOD?
>> OKAY.
>> NEXT SLIDE PLEASE.
OH, WAIT.
CAN YOU GO BACK ONE ACTUALLY?
I'M SORRY.
I'LL GO OFF THE SCREEN.
WE DID GO THROUGH THIS.
NEXT SLIDE, I APOLOGIZE.
THE FOLLOWING PEOPLE, TEAMS,
ORGANIZATIONS WILL NEED TO BUY
IN INCLUDING PATIENT ADVOCACY
GROUPS AND FOUNDATIONS, SENIOR
SCIENTISTS, PATIENTS.
WE NEED TO UNDERSTAND WHAT'S
REQUIRED TO ENABLE COLLABORATIVE
AND TEAM SCIENCE RESEARCH
EFFORTS THAT INTEGRATE BASIC AND
CLINICAL SCIENTISTS AND
DIVERSIFICATION OF BIOMEDICAL
RESEARCH WORKFORCE TO INCLUDE
BIOENGINEERS AS WELL.
NEXT SLIDE PLEASE.
SO, HOW ARE WE DOING THIS?
TO BOLSTER KNOWLEDGE THE
FOLLOWING IMMEDIATE STEPS ARE
CRITICAL.
WE WILL COLLABORATE WITH
COMMITTEES TO MAP STAKEHOLDERS
AND IDENTIFY NETWORKS,
COLLABORATE WITH NHLBI, OSPEEC
TO ISSUE RFI TO DETERMINE
EXPANDED LIST OF STAKEHOLDERS
AND MOTIVATIONS, REQUEST FOCUS
GROUPS BASED OFF RFI RESULTS.
NEXT SLIDE PLEASE.
AND IN YEAR 2 DEVELOP PROGRAMS,
TECHNIQUES AND METHODS AND ALIGN
WHAT CONNECTIVE TACTICS WILL
LOOK LIKE.
LONG TERM WOULD LIKE TO SEE
PERMANENT ENTITY.
I BELIEVE THAT'S ALL SHE WROTE.
WE'LL OPEN THE FLOOR FOR
DISCUSSION.
I WANT TO GIVE JEFFREY THE
CHANCE TO ADD ANYTHING.
>> YEAH, THAT WAS GREAT.
TO FRAME THE DISCUSSION, I THINK
MUCH LIKE WHAT STEPH AHEAD OF
CYNTHIA'S PRESENTATION, THIS
GROUP NEEDS EDUCATION BECAUSE IT
IS BY NATURE A NETWORK-BASED
THING.
WHAT WE'RE TRYING TO DO.
OUR COMMITTEE IS A SMALL
COMMITTEE, ONLY A SMALL
REPRESENTATION OF THIS WIDER
COMMITTEE, ONLY A MICROSCOPIC
REPRESENTATION OF THE GROUPS WE
NEED TO CONNECT US.
THROUGH THE RFI PROCESS OR IN A
PARALLEL INTERNAL PROCESS, IT
WOULD BE HELPFUL TO THINK ABOUT
FROM YOUR PERSPECTIVES BECAUSE
YOU'RE IN THESE SPACES, HOW
NEEDS TO BE CONNECTED, WHO
ALREADY I WAS, WHO NEEDS TO BE
CONSOLIDATED, AND WHO NEEDS TO
BE EVANGELIZED, THOSE ARE PEOPLE
NOT IN THIS SPACE WHO NEED --
NEED?
WHO IT WOULD BE HELPFUL TO BRING
INTO THE SPACE.
WHAT BARRIERS KEEP THEM OUT, HOW
DO WE DO THAT?
THIS IS WHERE OUR COMMITTEE
REALLY NEEDS TO COLLABORATE WITH
ALL OF YOU ALL BECAUSE WE REALLY
DON'T HAVE THE CAPACITY, EVEN
THE NETWORK OF CONNECTIONS TO DO
THAT.
>> LET'S FOCUS ON THE QUESTIONS
FOR THIS DISCUSSION, THIS
COMMITTEE WOULD SEE VALUE
HEARING FROM YOU ALL ABOUT
JEFF'S QUESTIONS.
AS A RECAP WHO ALREADY
IDENTIFIES IN THIS SPACE THAT
NEEDS TO BE CONNECTED, WHO DO WE
NEED TO RECRUIT AND WHAT
BARRIERS ARE KEEPING THEM FROM
CONNECTING?
WE'D LOVE TO HEAR SOME COMMENTS
ON THAT.
>> I THINK THIS IS A TALL ASK,
HEARKENS BACK TO SOME OF THE
DISCUSSION WE'VE ALREADY HAD BUT
WE CAN PERHAPS ACKNOWLEDGE THERE
ARE FOCI OF CLINICAL LEARNING
AND DISSEMINATION THAT SHOULD
CONSIDER THEMSELVES PART OF THIS
COMMUNITY THAT DON'T HAVE ANY
IDEA THEY ARE THERE, AND THAT
WOULD INCLUDE AMERICAN BOARD OF
INTERNAL MEDICINE, HEART
ASSOCIATION, AMERICAN ACADEMY OF
PEDIATRICS, CANCER IS PROBABLY
CLOSER IN THAN SOME OTHERS.
SOMEHOW, I THINK WE NEED TO
FORGE A PATH TO THESE ENTITIES
SO THAT WE CAN SPEAK
COLLABORATIVELY ABOUT
ACKNOWLEDGING NOT ONLY THAT
THEIR SPECIALLY MIGHT BE AN
AVENUE FOR THE PATIENT TO
SELF-IDENTIFY AS IN THE NARROW
DEFINITION OF LYMPHATIC DISEASE
BUT ALSO IN THE BROADER
DEFINITION WE'VE BEEN TALKING
ABOUT SPECIALTIES REPRESENT
FUTURE AVENUES FOR APPLYING
LYMPHATIC BIOLOGY IN MEDICINE.
SO, I VOTE FOR THE INTAKE
PROCESS INCLUDING
REPRESENTATIVES FROM THESE LARGE
CLINICAL ORGANIZATIONS TO TALK
ABOUT HOW WE CAN CREATE A
RELATIONSHIP AND MINE THEM FOR
INFORMATION AND IN TURN
DISSEMINATION INFORMATION AS WE
HAVE.
>> I LIKE THAT IDEA.
WONDERING IF IT'S UNREALISTIC TO
THINK ABOUT HAVING A SPECIAL
MEETING WHERE WE BRING THESE
ENTITIES IN ONE SPACE, MAYBE IF
THERE'S AN INDIVIDUAL FROM THESE
AREAS WE COULD INVITE AND SEE
WHAT ENDS UP HAPPENING.
WHAT I FIND INTERESTING IN THESE
SPACES, ONE, THIS IS NEW,
EXCITING OPPORTUNITY THAT HAS
HAD YEARS AND YEARS OF GETTING
HERE, I RECOGNIZE THAT.
BUT MAYBE FOR THAT REASON THAT
MIGHT BE SOMETHING WHERE
SOMEBODY WOULD BE INTERESTED IN
COMING AND BE A POSITIVE ELEMENT
AND WHEN THEY SEE OTHER GROUPS
IT MIGHT BE A MOTIVATING FACTOR
TOO.
>> YEAH, I AGREE.
I THINK WE LOOK ADVERTISEMENT,
PEOPLE DOESN'T KNOW ABOUT THIS
FEELING.
I SAID THIS FROM MY OWN
EXPERIENCE.
I'M A DEVELOPMENTAL BIOLOGIST,
VASCULAR BIOLOGIST.
I'M PART OF THOSE SOCIETIES.
BASICALLY HOW INVESTIGATORS
PRESENTING AT THIS ANNUAL
MEETINGS THAT TALK ABOUT
LYMPHATICS, IT TAKES A LONG
TIME, STILL THERE ARE ONE OR TWO
AMONG HUNDRED SPEAKERS THAT ARE
REPRESENTING THE FIELD.
I THINK WE SHOULD EACH OF US IN
OUR OWN COMMUNITIES PUSH TO HAVE
MORE PEOPLE IN OUR FIELD PRESENT
IN THOSE FORMS, WHERE PEOPLE CAN
LEARN ABOUT IT.
AGAIN, IN OTHER SOCIETIES IN
WHICH LYMPHATICS ARE NOT PART, I
DON'T KNOW, CANCER MEETINGS
PROBABLY LYMPHATICS ARE MOSTLY
REPRESENTED, RIGHT?
AND NEURAL MEETINGS, WHICH ARE
ALSO 40,000 PEOPLE, OR SOMETHING
LIKE THAT.
TRY TO CONVINCE YOUR COLLEAGUES
INVEST THE WORD LYMPHATICS IN
YOUR TALKS IS SOMETHING WE COULD
DO JUST TO TRANSMIT BECAUSE
AGAIN WE'RE A MINORITY.
IT HAS BEEN AN ISSUE FOR ME
GETTING BETTER BUT STILL WE'RE
VERY VIEW.
SOCIETY FOR DEVELOPMENTAL
BIOLOGY IS RARE, SDB.
IT HAS IMPROVED A LOT, NOW
ANOTHER SOCIETY OF CELL BIOLOGY,
I DON'T KNOW IF THERE ARE
LYMPHATIC TALKS, EVER.
SO IT'S VERY RARE.
SO WHEN THEY INVITE US, IT'S
JUST LIKE, OH, LOOK AT THIS.
OH, SOMETHING FOR AN EXHIBITION,
RIGHT?
SO BUT IT NEEDS TO BECOME MORE
OF A THING THAT WE ARE PART OF
THE PROGRAMS.
>> THANK YOU.
IT FEELS LIKE THERE'S A
COUPLE -- I THINK THERE'S
DIFFERENT GROUPS THAT YOU'RE
TRYING TO EVANGELIST IN.
AND I FEEL SO YOU GET THE
PATIENTS AND THOSE AFFECTED BY
LYMPHATIC DISEASES, AND THEN YOU
HAVE THE RESEARCHERS, I THINK
THE STRATEGIES TO EVANGELIZE ARE
GOING TO BE DIFFERENT IN TERMS
OF MOTIVATIONS.
SO, I JUST WANTED TO POINT THAT
OUT THAT I DON'T KNOW I KNOW
YOU'RE ALREADY A SMALL COMMITTEE
BUT WE HAVE TO FURTHER SUBDIVIDE
TO GET AT THESE DIFFERENT
STAKEHOLDERS.
THERE'S SYNERGY WITH THE
EDUCATION COMMUNITY.
IN THE SCIENTIFIC ROADMAP, PART
SHOULD BE TRYING TO TAKE CARE OF
AT LEAST THAT BRINGING PEOPLE
INTO THE FIELD PIECE OF IT AS
WELL AS POTENTIALLY TO --
BECAUSE THAT ROADMAP WILL
INVOLVE FUNDING, WITH THAT IS
MOTIVATION TO STAN'S EARLIER
POINT, HOW PEOPLE NEED TO BE
MOTIVATED TO GET INTO THESE
SPACES AND SEE THERE'S A FUTURE.
THEY START A RESEARCH PROGRAM
THAT'S GOING TO BE
(INDISCERNIBLE) FOR TIME.
>> THIS HAS BEEN SUPER HELPFUL
JUST THIS MEETING AND HEARING
FROM THE OTHER GROUPS BECAUSE I
THINK THE CONNECTIONS WITH THESE
OTHER COMMITTEES BECOME VERY
OBVIOUS, RIGHT?
SO IF THERE'S A RESEARCH
ROADMAP, THAT INCLUDES CORE
GROUPS VERSUS THESE OTHER GROUPS
THAT ARE SORT OF WALKING IN, THE
ACT OF BRINGING THOSE PEOPLE IN
IS THE WORK OF THIS COMMITTEE
AND ACT OF PATIENT ACCESS IS
VERY CLEAR HOW THEY CONNECT TO
EACH OTHER.
A QUESTION I HAVE, WHAT WILL BE
THE THING FOR THIS GROUP THAT
MAKES THAT FAIL OR WHAT WILL
MAKE THAT LIKELY TO BE
SUCCESSFUL?
I DON'T NEED TO HEAR FROM YOU
BECAUSE I KNOW THE IDEAS, I'M
CURIOUS WHAT YOU THINK, WHAT ARE
THINGS LIKELY TO SCREW THIS UP
AND CAUSE IT TO BE A NOTHING OR
WHAT MAKES IT WORK?
>> I'M GOING TO ARGUE FROM TOP
TOWN DOWN, SAN ANTONIO BREAST
CANCER MEETINGS, I SAT DOWN, FOR
AN ORAL PRESENTATION OR POSTER,
GOT NOTHING.
I LOOKED THROUGH THE PROGRAM,
NOTHING.
FINALLY SURGEONS WHO DO
MICROVASCULAR APPROACH
APPROACHED THE COMMITTEE AND
SAID WE WANTED TO SPEAK, TO GET
CREDIBILITY AND REIMBURSEMENT,
MAY ALREADY BE GETTING
REIMBURSEMENT.
TOP-DOWN IF PHYSICIANS ARE ABLE
TO CODE AND BUILD, THE
CONFERENCE MAYBE WILL LISTEN.
I DON'T KNOW.
JUST ONE EXAMPLE.
>> AGAIN, I THINK TO BRING
PEOPLE -- THIS IS REALLY JUST
SORT OF RESEARCHER FOCUSED.
THERE NEEDS TO BE AN ABILITY TO
HAVE A SUSTAINED RESEARCH
PROGRAM.
YOU KNOW, SORT OF THE ONE YEAR,
TWO YEAR FUNDING IS GREAT IF
YOU'RE ALREADY IN THAT FIELD,
TRYING TO START A NEW PROJECT.
TO HAVE SOMEONE TAKE A LEAP THAT
HAS AN ESTABLISHED LAB TO START
A NEW PROJECT, THEY NEED TO SEE
FUTURE TO IT.
IF I'M A YOUNG PERSON CURIOUS
ABOUT LYMPHATICS THINKING, OKAY,
MY FIRST PROJECT IN MY NEW LAB
WILL BE A LYMPHATIC-BASED
PROJECT THEY NEED TO SEE
SUSTAINABLE FUNDING.
IT'S NOT JUST GOING TO BE A
COUPLE YEARS AND THIS DISAPPEARS
WHICH WHEN WE WERE TALKING ABOUT
THAT RESEARCH INFRASTRUCTURE, IT
NEEDS TO BE PERMANENT.
IT CAN'T BE -- I MEAN I LOVE THE
SENTIMENT BEHIND THE CANCER
MOONSHOT BUT I THINK IT WAS A
LITTLE BIT MISGUIDED BECAUSE THE
FUNDING WAS ALWAYS SHORT TERM
AND IT'S BEEN EFFECTIVE IN SOME
WAYS BUT I DON'T WANT TO SEE
THAT HAPPENING HERE.
SO WHEN YOU'RE ASKING ABOUT
FAILURE MODES, TO ME IT'S A LOT
OF SHORT TERM RESOURCES THAT
AREN'T SUSTAINED OVER TIME, THAT
PEOPLE LOSE INTEREST WHEN THE
FUNDING RFAs GO AWAY, WHEN
OPPORTUNITIES GO AWAY.
>> DO YOU REMEMBER IN 2008 WHEN
THERE WAS ALL THE MONEY THAT
CAME THROUGH FOR THE
SHOVEL-READY PROJECTS,
EVERYONE'S LAB EXPANDED
DRAMATICALLY.
TWO YEARS LATER EVERYONE LOST
THEIR JOB.
>> TO ME THAT'S THE FAILURE
MODE.
THAT'S WHY I KEPT USING THAT
WORD, PERMANENT.
THIS NEEDS TO BE LONG-TERM
SUSTAINED EFFORT.
>> CLINICAL SIDE, THE FAILURE
TRIP SWITCH IS THE DOOR WON'T
OPEN, RIGHT?
TO GO TO MERGE COLLEGE OF
SURGEONS, THEY DON'T WANT TO
TALK TO YOU.
IF WE CAN GET INTO DIALOGUE, WE
HAVE A COMPELLING STORY AND WE
CAN THINK CREATIVELY HOW TO
ACHIEVE GOALS BUT I THINK IT'S
MAKING THAT INITIAL CONTACT
THAT'S FAVORABLE THAT WILL THEN
OPEN TREMENDOUS OPPORTUNITIES IN
MANY, MANY AREAS.
SO WE HAVE TO THINK CAREFUL
MAYBE WHO TO APPROACH AND WHAT
THE PITCH OF THE INITIAL -- WHAT
THE INITIAL ELEVATOR PITCH.
>> CORRECT ME IF I'M WRONG,
ISN'T LIKE THE ABILITY TO GET
CPT CODING OTHER ABILITY TO TALK
TO COLLEGES ABOUT CHANGING
CURRICULUM TO INCLUDE EDUCATION
ON LYMPHATIC DISEASE AND ALSO TO
GET FUNDING WOULD BE RELYING ON
BEING ABLE TO QUANTIFY THIS
LYMPHEDEMA OR LYMPHATIC DISEASE
COMMUNITY BECAUSE ONCE YOU SEE
THE NUMBERS INDIVIDUALS AFFECTED
BY LYMPHATIC DISEASES MAYBE
PEOPLE WILL START TO LISTEN,
RIGHT?
AND SAY THIS IS WHAT WE NEED TO
PUT SOME FUNDING IN THEIR
BECAUSE SO MANY PEOPLE ARE
AFFECTED BY THIS DISEASE, WE
NEED TO LEARN MORE ABOUT IT AND
IT'S IMPACTING ALL THESE OTHER
AREAS, IT'S IMPACTING HEART
DISEASE OR OTHER AREAS IN THE
BODY.
SO I THINK A BIG GOAL WOULD BE
TO QUANTIFY HOW MANY PEOPLE THIS
IS IMPACTING, AND THIS IS A
LIFELONG THING, RIGHT?
NOT GOING AWAY.
THIS MANY PEOPLE ARE IMPACTED BY
IT.
SO, WHERE WE NEED TO GO, THINGS
WILL START TO OPEN.
>> I AGREE.
THE SIZE OF THE COMMUNITY, TO
THIS GROUP'S POINT, THE BURDEN
OF THESE DISEASES.
AGAIN, I KNOW THERE ARE MORE
COMMENTS AND I APOLOGIZE FOR
HAVING TO STIFLE THE
CONVERSATION BUT WE DO NEED TO
KEEP MOVING.
ONE LAST ONE.
>> I'D LIKE TO FOLLOW UP ON WHAT
STAN SAID, AMERICAN COLLEGE OF
SURGEONS DOESN'T WANT A
DIALOGUE.
CAN YOU ELABORATE ON WHY YOU
THINK THAT IS?
THAT WOULD HELP US THINK ABOUT
WAYS AROUND IT, IT MAY BE
THERE'S NO THERAPEUTICS, NO
SPACE TO WORK IN, IS THAT IT?
>> I DIDN'T MEAN TO SINGLE THEM
OUT.
IT'S REPRESENTATIVE.
>> I'M NOT TRYING TO TRASH.
IMPORTANT COMMUNITY.
>> EMBLEMATIC OF ANY ONE OF
THESE SOCIETIES.
THE ISSUE IS THEY HAVE TO
PERCEIVE THE PROBLEM
EQUIVALENTLY OR AT LEAST BE OPEN
TO PERCEPTION AND MAYBE
UNDERSTAND HOW SMALL THE INITIAL
AVENUES NEED TO BE JUST INSTEAD
OF COMPETITIVELY SENDING
ABSTRACTS FOR 10-MINUTE
PRESENTATION, AS YOU SAID, IF
THEY COULD HIGHLIGHT LYMPHATICS
AT THE ANNUAL MEETING,
SELF-PERPETUATING.
ASKS ARE SMALL BUT WE JUST NEED
TO GET THEM IN DIALOGUE SO THEY
EVEN ACKNOWLEDGE THEY NEED TO BE
TALKING TO US.
>> THANK YOU FOR THE POINT.
WE'RE GOING TO CIRCLE BACK TO
BABAK, HOPING THE TECHNOLOGY IS
UP AND WE NEED TO FLIP BACK TEN
SLIDES.
>> SORRY ABOUT THAT.
I WISH I WAS THERE.
OF COURSE THE TECHNOLOGY BREAKS
DOWN RIGHT WHEN I NEED IT.
>> THANK YOU, BABAK.
SLIDES ARE GOOD TO GO.
>> BABAK, CAN YOU SAY NEXT SLIDE
WHEN YOU'RE READY.
>> YOU CAN GO AHEAD AND GET
STARTED.
>> I DON'T SEE THE SLIDES ON THE
PROJECTION.
>> WE'RE WORKING ON IT.
>> WE CAN SEE YOU THOUGH.
>> THERE WE GO.
>> ALL YOURS.
>> OKAY, GOOD.
WE HAVE A VERY SMALL COMMITTEE
SO THIS IS BASED ON THE WORK OF
FOUR PEOPLE AND I WANT TO THANK
THEM IN ADVANCE FOR THEIR INPUT.
OUR VISION STATEMENT IS THE SAME
AS MANY OTHERS TALKED ABOUT
TODAY, REVOLUTION ACCESS TO
LYMPHATIC DISEASE TREATMENT BY
ADVOCATING FOR THIRD PARTY
COVERAGE, INCENTIVIZE PROVIDERS
TO INNOVATE, COME UP WITH
PROCEDURES, NEW TREATMENTS, AND
FOSTERING CUTTING-EDGE RESEARCH
TO IDENTIFY EFFECTIVE THERAPIES,
ACHIEVING THIS WILL ESTABLISH
HOLISTIC HEALTH CARE TO PROVIDE
COMPREHENSIVE SYSTEM AND ADDRESS
ALL ASPECTS OF HELD AND
WELL-BEING.
THIS IS IMPORTANT BECAUSE IN
MEDICINE OFTENTIMES WE THINK
ABOUT THE PHYSICAL ISSUES BUT
WITH LYMPHATIC DISEASE MENTAL
AND SOCIAL NEEDS ARE VERY
IMPORTANT ALSO.
LYMPHATIC DISEASES ARE OFTEN NOT
COVERED OR INCLUDED IN DISEASES
COVERED BY INSURANCE, AND WE
WANT TO CREATE A BETTER
EXPERIENCE BY BEING ABLE TO
ENGAGE WITH INSURANCE PAYERS,
MEDICAL DEVICE VENDORS AND
PHARMACEUTICAL COMPANIES TO
INVESTIGATE NEW TREATMENTS AND
EFFECTIVE TREATMENTS.
THIS IS REALLY IMPORTANT BECAUSE
OF COURSE LYMPHATIC DISEASES ARE
UNDERSERVED, NOT HAVING ACCESS
TO TREATMENTS IS A BIG PROBLEM.
NEXT SLIDE.
YOU'VE HEARD A LOT SAID ABOUT
CPT CODES TODAY AND
UNFORTUNATELY THIS IS VERY, VERY
IMPORTANT, HAVING A CPT CODE FOR
A PROCEDURE OR DIAGNOSIS IS THE
ONLY WAY TO GET PAID FROM AN
INSURANCE COMPANY.
AND THAT REQUIRES WORKING WITH
CMS AND SETTING MEDICAL
STANDARDS FOR THIS.
CPT CODES NEED TO BE LINKED TO
ICD-10 DIAGNOSIS CODES.
ICD-10s ARE FOR DIAGNOSIS.
WE HAVE LOTS OF CODES FOR THE
LYMPHATIC DISEASES BUT NO CPT
CODES SPECIFIC TO LYMPHATIC
DISEASES.
MOST IN THIS FIELD END UP USING
BLOOD VESSEL REPAIR CODES WHICH
USUALLY GET DENIED BY INSURANCE
COMPANIES.
I THINK IT'S IMPORTANT FOR US TO
BE ABLE TO HAVE DIALOGUE AND
ESTABLISH NEED FOR
LYMPHATIC-SPECIFIC CPT CODES AND
WE'LL BE ABLE TO MEASURE SUCCESS
BY ADDRESSING OUR INTERACTION
WITH OTHER AGENCIES AND LOOKING
AT HOW HAVING CPT CODES
DECREASES PATIENT EXPENSES.
NEXT SLIDE.
HOW IS HARD, UNFORTUNATELY.
I THINK WE NEED TO UNDERSTAND
THE FULL SCOPE OF THE DISEASE AS
EVERYONE MENTIONED AND NEED TO
UNDERSTAND WHAT TREATMENTS ARE
OUT THERE NOW AND HOW EFFECTIVE
THESE ARE.
AND WHAT DEGREE OF EVIDENCE DO
WE HAVE FOR EFFICACY.
AND WE NEED TO BE ABLE TO
LEVERAGE THIS UNDERSTANDING AND
WHITE PAPERS ON LYMPHATIC
DISEASE TO ACHIEVE TREATMENT FOR
THESE TREATMENTS NOT CONSIDERED
EXPERIMENTAL.
NEXT SLIDE.
BARRIERS, THERE'S NO REAL
CRITERIA TO COME UP WITH
UNDERSTANDING OF WHAT IS
EXPERIMENTAL AND WHAT IS
TREATMENT FOR PROCEDURES.
WE HAVE GOOD METHODS FOR DRUGS
BUT FOR PROCEDURES NO GOOD
METHOD TO IDENTIFY WHICH
PROCEDURES ARE STANDARD OF CARE
AND WHICH ARE EXPERIMENTAL.
THIS IS A REALLY BIG PROBLEM IN
LYMPHATIC.
PART IS BECAUSE OF THE LACK OF
CLARITY THAT WE HAVE FOR
LYMPHATIC DISEASE AND
TREATMENTS.
THERE'S LOTS OF NAMES WE GIVE TO
THESE DISORDERS, PATIENTS AND
PROVIDERS GET CONFUSED, AND
REALLY THE PROBLEM ENDS UP BEING
EDUCATION OF HEALTH CARE
PROFESSIONALS TO DIAGNOSIS
DISEASES AND INSURANCE COMPANIES
TO RECOGNIZE THEM AS A REAL
PROBLEM.
SO IT ALSO CIRCLES BACK TO THE
LYMPHATICS-SPECIFIC CPT CODES,
MENTIONED THIS HAS BEEN HELD UP
BECAUSE IN ORDER TO ESTABLISH A
NEW CPT CODE YOU NEED TO TAKE
FUNDS FROM OTHER CPT CODES, A
ZERO SUM GAME AND THAT'S WHY THE
AMA OR PERHAPS AMERICAN COLLEGE
OF SURGEONS ARE NOT QUITE SO
INTERESTING IN LYMPHATIC
SURGERY.
WE NEED TO ENGAGE CLINICIANS,
SURGEONS, CMS, AND INSURANCE
COMPANIES TO BE ABLE TO DO THIS.
THE ACTION PLAN IS OF COURSE WE
WANT TO UNDERSTAND THE SCOPE OF
THE DISEASE.
WE WANT TO UNDERSTAND WHAT CMS
COVERS CURRENTLY, WHAT'S
CONSIDERED STANDARD OF CARE,
WHAT ARE THE FDA-SPONSORED
ORPHAN DRUG DISCOVERY PROGRAMS,
AND WE NEED TO DO A SYSTEMATIC
REVIEW OF LITERATURE LOOKING FOR
TREATMENTS THAT HAVE DEGREES OF
EFFICACY AND UNDERSTAND HOW MUCH
EFFICACY THE TREATMENTS HAVE.
THERE'S A LOT OF THINGS THAT ARE
PUBLISHED IN LITERATURE AND SOME
THINGS ARE AFFECTIVE, OTHERS ARE
NOT BUT WE NEED TO LOOK FOR
TREATMENTS THAT HAVE BEEN USED
BY MULTIPLE GROUPS IN STUDIES
THAT HAVE GOOD DESIGN TO BE ABLE
TO ADVOCATE FOR THESE TREATMENTS
BEING COVERED.
AND WE NEED TO DO THIS BY
LEARNING THIS AND UNDERSTANDING
THE STAKEHOLDER MAPPING.
NEXT SLIDE.
IN YEAR TWO WE WOULD FORMULATE
RECOMMENDATIONS BASED ON OUR
FINDINGS OF SYSTEMATIC REVIEWS,
REALLY IMPORTANT TO THIS.
AND WE WOULD ADVOCATE FOR
DEVELOPING A NEW CPT CODE FOR
LYMPHATIC DISEASES AND
TREATMENTS.
AND THE KEY ISSUE HERE IS
UNDERSTAND THE RELATIVE VALUE
FOR THESE TREATMENTS, RELATIVE
VALUE UNITS ARE ASSIGNED TO EACH
CPT CODE AND THOSE ARE USED TO
DETERMINE HOW MUCH THE HOSPITALS
GET AND WHAT THE PHYSICIAN FEES
ARE AND SO THESE ARE VERY
IMPORTANT.
AND I THINK THERE'S NO REAL
METHOD AVAILABLE NOW FOR
COVERAGE FOR OFF-LABEL DRUG
USAGE, IF YOU HAVE A DRUG THAT'S
ALREADY APPROVED FOR ONE
INDICATION AND YOU TRY TO USE IT
FOR LYMPHATICS, FOR EXAMPLE,
THEY OFTEN GET DENIED BECAUSE
IT'S AN OFF-LABEL USE AND
CONSIDERED EXPERIMENTAL SO I
THINK THIS IS REALLY IMPORTANT.
NEXT SLIDE.
THIS PLAN IS VERY AMBITIOUS.
I'M NOT SURE IF IT'S FEASIBLE
BUT I THINK IN ORDER TO BE ABLE
TO ACHIEVE THE GOAL OF ENGAGING
THE THIRD PARTIES AND OBTAINING
COVERAGE FOR THESE TREATMENTS WE
REALLY NEED TO BE AMBITIOUS AND
WE'LL NEED HELP TO DO THIS.
I THINK THE MOST IMPORTANT
ASPECT OF THIS IS GOING TO BE
IDENTIFYING COMMON LYMPHATIC
DISEASES AND INITIATING A
LITERATURE REVIEW OF THE
TREATMENTS THAT ARE CURRENTLY IN
USE, EFFICACY, DISEASE BURDEN
AND ECONOMIC IMPACT AND BASED ON
THIS CONTINUE LITERATURE REVIEW
TO SEE WHAT METHODS ARE
AVAILABLE AND WHAT THE DEGREE OF
KNOWLEDGE IS ABOUT EACH PROGRAM
AND HOW EFFECTIVE PROGRAMS ARE
BASED ON REPORTED STUDIES.
LITERATURE IS THE KEY THING TO
BE ABLE TO GO TO THE INSURANCE
COMPANIES AND CMS AND PROVIDE
INFORMATION AND SHOW THEM THIS
IS NOT EXPERIMENTAL, THESE
TREATMENTS ARE NOT EXPERIMENTAL,
AND I THINK THAT'S THE MAIN SORT
OF FOCUS OF YEAR 2.
WE HOPE TO BE ABLE TO COME UP
WITH LYMPHATIC DISEASE CURRENTLY
NOT COVERED BY CPT CODES AND
ENGAGING CMS TO DEVELOP NEW CPT
CODES FOR THESE PROCEDURES.
NEXT SLIDE.
THAT'S IT.
I'M HAPPY TO TAKE QUESTIONS.
STAN IS THE EXPERT, AND MAX AS
WELL, IN THE AUDIENCE.
>> I'LL OPEN UP TO THE GROUP.
WHAT'S WORKING, WHAT BUILDS DO
WE HAVE, WHAT CONNECTION POINTS
DO WE HAVE?
>> JUST TO HELP THE
NON-PHYSICIANS UNDERSTAND HOW
THE MONEY RUNS, SO DO PHYSICIANS
GET A SET AMOUNT OF MONEY PER
PATIENT, SAY, WITHIN A HEALTH
PLAN THEY COULD SPEND AS THEY
LIKE, YOU'RE SAYING IF YOU
DEVELOP NEW CPT CODES FOR
LYMPHATICS, IT'S GOING TO TAKE
AWAY FROM SOME OTHERS.
HOW DOES THAT WORK?
>> THAT'S A GOOD QUESTION.
PHYSICIANS DON'T GET THE MONEY.
IT'S THE BUDGET FOR CMS.
CMS HAS AN ANNUAL BUDGET.
THAT BUDGET IS DIVIDED INTO
VARIOUS CPT CODES, THERE'S ONLY
SO MUCH MONEY AVAILABLE.
IF THERE'S A NEW TREATMENT THEN
THAT NEW TREATMENT AND THAT NEW
CPT CODE NEEDS TO TAKE AWAY FROM
OTHER TREATMENTS SO IT BECOMES A
VERY BIG POLITICAL PROBLEM
BECAUSE YOU ESSENTIALLY HAVE TO
FIGHT OTHER DISORDERS AND OTHER
ADVOCACY GROUPS IN ORDER TO GET
FUNDING FOR YOURS.
SO THIS IS MUCH, MUCH MORE
DIFFICULT THAN YOU COULD EXPECT
IT TO BE BECAUSE JUST LIKE
LYMPHATIC DISEASES THE OTHER
DISEASES ALSO HAVE STRONG
ADVOCACY GROUPS AND WILL FIGHT
BACK ON EFFORTS TO ESTABLISH CPT
CODES AND TAKE AWAY FROM THEIR
ESSENTIALLY.
STAN, DO YOU WANT TO COMMENT ON
THAT?
>> HE STEPPED OUT.
>> GOOD TIMING.
>> IT'S DIFFICULT FOR ME TO
CONVINCE OTHER PHYSICIANS TO DO
PROCEDURES BECAUSE RIGHT NOW,
LIKE CHEST X-RAY, A LITTLE BIT
MORE, THEY CAN SPEND SOMETIMES
SIX, SEVEN, EIGHT HOURS.
RIGHT NOW MY TYPE OF PROCEDURES,
WHAT I DO, ENTHUSIASTIC IN A FEW
PLACES BECAUSE PRIVATE PRACTICE
I'M NOT GOING TO SPEND EIGHT
HOURS.
THE MORE YOU CREATE INCENTIVE OF
COURSE PEOPLE WILL START TO DO
MORE.
>> I'M GOING TO COMMENT ON THAT
FOR JUST A SECOND, MAX.
I'M GOING TO BRING THAT BACK.
THAT'S THE RVU COMPONENT.
EACH CPT HAS AN RVU ASSOCIATED.
WHAT MAX IS SAYING THE CPT CODES
WE CAN CURRENTLY USE FOR
LYMPHATICS ARE VERY LOW RVUs,
AND SO THERE'S ESSENTIALLY NO
INCENTIVES FOR PRIVATE PRACTICE
PHYSICIANS AND OTHER PHYSICIANS
TO DO THESE PROCEDURES.
I'M SORRY, GO AHEAD, MAX.
>> LYMPHATIC SURGERY AS WELL,
RIGHT?
>> YES, EXACTLY.
>> PRETTY MUCH NOT EXPLODING
BECAUSE IT'S SUCH A COMPLICATED
SURGERY, REQUIRES SO MUCH
TRAINING, AND WE GET PUSHBACK
BECAUSE THEY DON'T WANT US TO DO
PROCEDURES THAT DON'T MAKE
MONEY.
RELATED TO THAT AND EVERYTHING
IN EDUCATION, ANOTHER MONEY
ISSUES ISSUE.
WE WOULD NEVER MAKE PROGRESS
UNLESS INTERESTED IN STEPPING
FROM EDUCATION PERSPECTIVE, MOST
IMPORTANT VENUE, EVERY MEETING
YOU GO 90% INDUSTRY.
THIS WOULD NEVER GET IN UNTIL
THEY HAVE SOMETHING TO SELL.
AND TO GO BACK TO THAT, UNTIL WE
FIGURE OUT COMMON LYMPHATIC
DISEASES WHERE THE INDUSTRY
STARTED DEVELOPING, OH,
INTERESTING TO HELP US DEVELOP
SOME TYPE OF DEVICES, WE'RE NOT
GOING TO MAKE HUGE PROGRESS
BECAUSE, AGAIN, IT'S ALL ABOUT
MONEY UNFORTUNATELY.
SO THIS IS TIED TOGETHER.
I WORK WITH, IN MY WORLD, ONLY
ONE COMPANY, AMAZING SUPPORTER
OF WHAT WE'RE DOING, PROVIDING
ENORMOUS AMOUNT OF EDUCATION
SUPPORT, COURSES, INVITED TALKS,
SEMINARS THAT WE TALKED ABOUT
ACTUALLY VIRTUAL REALITY, WE DID
SIX OR SEVEN MOVIES OF VIRTUAL
REALITY, THE ACTOR IS
UNBELIEVABLE, YOU CAN STAND NEXT
TO PHYSICALLY, BUT SPONSORED BY
INDUSTRY.
NOT JUST THE MONEY.
IT'S ALSO ORGANIZATION
MOTIVATION.
UNFORTUNATELY ONLY WAY TO FIND
ORGANIZATION IS IN INDUSTRY.
IT'S ALL TIED TOGETHER WITH BIG
MONEY.
THE INDUSTRY IS SUPPOSED TO
START, WE NEED TO FIND COMMON
DISEASES, SOLUTIONS FOR THAT.
INDUSTRY STEP IN AND GET BACK TO
THE EDUCATION AND DISSEMINATION
OF KNOWLEDGE BY INSTITUTE.
>> YEAH, A BIG PORTION AS OTHER
PEOPLE MENTIONED IS THE DISEASE
BURDEN.
LOT OF THESE DISEASES ARE ORPHAN
DISEASES BUT OTHERS ARE COMMON,
WE DON'T KNOW HOW COMMON THEY
ARE.
WE DON'T UNDERSTAND THE ECONOMIC
BURDEN OF THIS, THESE DISEASES,
BECAUSE THEY ARE NOT COVERED BY
INSURANCE AND SO THEY ARE
COVERED BY PERSONAL COST, SO WE
DON'T REALLY UNDERSTAND THE
ECONOMIC IMPACT FOR EXAMPLE OF
LYMPHEDEMA CARE, TIME LOST FROM
WORK, GARMENTS, PHYSICAL
THERAPY, THINGS LIKE THAT.
THIS IS A BIG PROBLEM BECAUSE IF
THE INSURANCE COMPANIES AND THE
DRUG COMPANIES UNDERSTAND THE
DISEASE BURDEN IS HIGH, THEN
THEY ARE INTERESTED.
IT'S THERE'S -- ALSO THERE'S
GOOD EVIDENCE SO-CALLED ORPHAN
DISEASES ARE AMENABLE TO
TREATMENTS, THEN THERE'S
PATHWAYS THAT COULD BE USED TO
FUND DRUG TREATMENT AND DRUG
DEVELOPMENT FOR ORPHAN DISEASES
SO I THINK UNDERSTANDING THE
DISEASE BURDEN IS A VERY, VERY
KEY COMPONENT.
LOOKING AT WHAT'S OUT THERE, FOR
TREATMENTS, AND UNDERSTANDING
WHICH ONES ARE EFFECTIVE, WHICH
ONES ARE NOT AND LEVEL OF
EVIDENCE FOR EACH WILL HELP US
UNDERSTAND HOW WE CAN ENGAGE THE
THIRD PARTY PAYERS.
>> IF I COULD TAG ON, IT'S ONLY
FAIR TO TELL THOSE WHO PRACTICE
MEDICINE MOST OF THE MAJOR
GUIDELINES THAT WE USE TO TREAT
COMMON DISEASES IN HUMAN
MEDICINE ARE DRIVEN BY TRIALS
THAT WERE FUNDED BY INDUSTRY,
NOT THE NIH.
THE FACT WE RECOMMEND STATINS TO
TREAT TO A CERTAIN LEVEL OR THE
FACT THAT WE TREAT HYPERTENSION
A CERTAIN WAY, CANCER PROTOCOLS
WERE FOUNDED BY INDUSTRY OF
INDUSTRY AND WE NEED TO
KNOWLEDGE AND WE NEED TO ENGAGE
THEM I THINK AS WILLING PARTNERS
EARLY IN THE PROCESS BECAUSE
WE'RE GOING TO NEED THEM IN
ORDER TO MAKE THIS HAPPEN.
>> I KEEP HEARING SOME WORK THAT
NEEDS TO BE DONE GATHERING
EVIDENCE BY TREATMENT,
RECOMMENDED THE WAY IT IS, TO
YOUR POINT A LOT OF CURRENT
GUIDELINES ARE BASED ON
RANDOMIZED CONTROLLED TRIALS.
POTENTIALLY THAT SHOULD BE
INCLUDED IN SCIENTIFIC ROADMAP,
AS WELL AS FIGURING OUT HOW TO
DESIGN TRIALS, FUND THOSE
TRIALS, I DON'T KNOW HOW YOU
FUND SURGICAL TRIALS THROUGH
INDUSTRY, SOMEWHAT MORE
COMPLICATED SO POTENTIALLY SOME
TRIALS DO NEED TO HAVE SUPPORT
FROM FUNDING AGENCIES.
I SAID THAT AS A STATEMENT, IT'S
REALLY A QUESTION.
IS THAT SOMETHING WE SHOULD BE
INCLUDING AS WE THINK OF A
ROADMAP AND SORT OF --
>> IT'S REALLY COMPLICATED.
RANDOMIZED CONTROLLED TRIALS
SOUND AMAZING AND WE SHOULD DO
THEM BUT IS IT ETHICAL TO DO
THEM?
IF THERE'S GOOD LEVEL 2, LEVEL 3
EVIDENCE, RETROSPECTIVE AND
PROSPECTIVE STUDIES TO SHOW A
PROCEDURE WORK FOR LYMPHEDEMA
PREVENTION IS IT ETHICAL TO
RANDOMIZE TO NO TREATMENT?
THERE'S TREATMENTS WITH GOOD
LEVEL 2 AND 3 EVIDENCE, NOT 1,
RANDOMIZED CONTROL TRIALS BUT WE
DON'T THINK IT'S ETHICAL.
WE DID A TRIAL FOR EXAMPLE
LOOKING AT SURGERY TO PREVENT
LYMPHEDEMA BY REPAIRING
LYMPHATIC TO VEINS AT THE TIME
OF SURGERY, LYMPHEDEMA BYPASS,
AND WE WERE CRITICIZED.
WE KNOW IT'S EFFECTIVE, IS IT
ETHICAL TO DO RANDOMIZED
PATIENTS TO CONTROL AND THE
REALITY WAS THAT THE DATA WAS
WEAK AND WE WERE ABLE TO JUSTIFY
THAT BUT FOR SOME OTHER
PROCEDURES PRETTY WELL
ESTABLISHED IT'S HARD TO JUSTIFY
RANDOMIZED CONTROLLED TRIAL.
>> AS YOU GO THROUGH THOSE
DISCUSSIONS AND IS THAT PART OF
HOW -- IS THAT THE STRATEGY FOR
GETTING CPT CODE APPROVAL IS
PRESENTING THESE OTHER EVIDENCE
AND, YOU KNOW, I'M JUST TRYING
TO UNDERSTAND HOW YOU'RE GOING
TO ACTUALLY BE EFFECTIVE, NOT
YOU, BUT THE COMMISSION BE
EFFECTIVE AT DRIVING THIS
PROCESS FORWARD.
>> YEAH, I THINK THAT'S THE
ISSUE, RIGHT?
WE DON'T ACTUALLY KNOW WHAT YOU
NEED TO DO TO PROVE THAT A
SURGERY WORKS.
SO, WE HAVE EXCELLENT WAYS TO
ASSESS DRUG TREATMENTS AND THEY
ARE VERY WELL
ELUCIDATED,EVERYONE UNDERSTANDS
WHAT IT TAKES TO GET A DRUG
APPROVED.
TO GET A SURGICAL PROCEDURE
APPROVED AS NON-EXPERIMENTAL IS
VERY DIFFICULT.
AS FAR AS I KNOW THERE'S NO
GUIDELINES TO DO IT BUT YOU HAVE
TO ASSEMBLE THE BEST DATA YOU
HAVE AND HOPE YOU CAN CONVINCE
CMS THAT YOUR ARGUMENT IS VALID,
AND THAT THEY ACCEPT THE FACT
THAT THIS RESEARCH ALTHOUGH NOT
LEVEL 1 EVIDENCE, NOT RANDOMIZED
CONTROLLED TRIALS, IS ADEQUATE
TO MAKE THE SURGERY NOT
EXPERIMENTAL.
I HOPE THAT MAKES SENSE.
>> I'M LISTENING TO WHAT MAX AND
YOU GUYS ARE SAYING NOW, I
WONDER WHETHER A GROUP WE'RE
MISSING HERE IS BIOTECH AS A
STAKEHOLDER.
SO MAYBE FOR FUTURE MEETING,
MAYBE TO INVITE THE HEADS OR
PEOPLE IN CHARGE OF DEVELOPING
DRUGS AND TREATMENTS FROM
GENENTECH, I DON'T KNOW, I KNOW
AT LEAST PEOPLE INVOLVED IN
VASCULAR ASPECT OF SOME OF THOSE
CONDITIONS, REGENERON IN
PARTICULAR, THEY DID LYMPHATIC
RESEARCH FOR A LONG TIME.
I THINK WHAT WE'RE SAYING WE
SHOULD AT LEAST TRY TO CONVINCE
THEM THIS FIELD IS WORTH IT TO
TRY TO INVEST AND HELP US TO
TEST WHETHER TREATMENT OR DRUGS,
DEVELOP THOSE DRUGS, SO IT
SHOULD BE AN EFFORT FOR THE NEXT
MEETING.
>> GOING TO SCIENTIFIC
ADVANCEMENT GROUP, USE THAT AS
AN OPPORTUNITY TO FIND OUT FROM
THEM WHAT RESEARCH WOULD BE
NECESSARY TO DE-RISK THESE
ENDEAVORS TO MAKE IT A SUITABLE
INVESTMENT FOR YOU, RIGHT?
IN MY FIELD, OUR DISEASES, IT'S
A 30-YEAR PROGRESSIVE DISEASE SO
WHEN YOU TALK TO GENENTECH ABOUT
ANTI-ALZHEIMER'S THERAPEUTICS
THEY WANT TO SEE DATA, RIGHT?
NOT YOUR STUPID ANIMAL MODEL.
FOR BIOTECH OR DRUG COMPANY,
WHAT WOULD DE-RISK THIS FOR THAT
YOU COULD BRING YOU INTO THE
ARENA AND IF THERE'S A COUPLE
COMMON THEMES THAT SHOULD
PROBABLY BE ON THE SCIENTIFIC
AGENDA, AS A KEY THING.
THE SECOND QUESTION THOUGH, FOR
NON-CLINICIAN, DOES THE V.A. AND
DHA FOLLOW THE CMS GUIDELINES OR
DO THEY HAVE THEIR OWN PATHWAY
FOR THIS?
>> THE ANSWER TO THE QUESTION, I
DON'T KNOW.
ESSENTIALLY ALL THIRD PARTY
INSURANCE COMPANIES FOLLOW CMS.
MAX, DO YOU KNOW?
>> I WAS CHAIR OF THE DEPARTMENT
FOR SEVERAL YEARS, IT'S EXACTLY
THE SAME.
>> TO THE RANDOMIZED CONTROLLED
TRIAL, ACTUALLY EVERYBODY THINKS
RANDOMIZED CONTROLLED TRIAL IS
THE BEST EVIDENCE.
IT'S ACTUALLY NOT.
IF YOU HAVE A DISEASE, FATAL
OUTCOME AND TREATMENT, FOR
EXAMPLE YOU DON'T NEED TO DO
RANDOMIZED TRIAL IF YOU JUMP
FROM HELICOPTER WITHOUT A
PARACHUTE, YOU DON'T NEED TO DO
RANDOMIZED CONTROLLED TRIAL IF
YOU BLEED FROM THE ARTERY SHOULD
YOU PUT YOUR FINISHING OTHER
THAT OR NOT?
I'M PARTIAL TO ALL THE ARTICLES
FROM MEDICAL JOURNALS, IN
LYMPHATIC DISEASE LIKE THAT,
AFTER YOU STOP LEAKING AT SOME
POINT YOU CANNOT IT
DO (INDISCERNIBLE).
THAT'S A HUGE PROBLEM.
WHEN WE SEND TO GOOD JOURNAL,
THE FIRST RESPONSE IT'S NOT
RANDOMIZED CONTROLLED TRIAL, AND
YOU HAVE TO ACTIVATE YOUR
CONNECTIONs TO CONVINCE THEM
TO GO TO REVIEW, RIGHT?
SO, THE SECOND INDUSTRY, WITHOUT
INDUSTRY WE'RE NOT GOING TO GO
ANYWHERE.
AND (INDISCERNIBLE).
IF YOU DON'T HAVE MARKET SIZE,
ORPHAN DISEASE TREATMENTS, FOUR
MILLION DOLLARS PER INJECTION,
RIGHT?
THAT'S MAYBE SOMEWHERE THERE,
BUT PRIMARILY MARKET SIZE.
>> I WANT TO MAKE THE POINT.
OUR INDUSTRY SECTOR IS THREE
SUBGROUPS, THERE'S THE
PHARMACEUTICAL ONE, OF COURSE,
THAT'S EASILY IDENTIFIED.
THERE'S A GROUP OF TECHNOLOGY
COMPANIES INTERESTED IN
DIAGNOSTICS OF VARIOUS SORTS.
THAT'S ONE AVENUE, BIOMARKERS,
OTHER DISEASE DETECTION DEVICES
THAT MAY OR MAY NOT BE UNDER
INVESTIGATION.
AND THE THIRD ARE DEVICES THAT
COULD BE USED THERAPEUTICALLY,
PARA SURGICALLY OR LOGICAL
INTERVENTION.
WE OUGHT TO TRY TO CAPTURE
INPUTS FROM ALL THESE PIPELINES
SO WE UNDERSTAND WHAT'S USABLE.
>> I LIKE THAT IDEA.
>> SORRY, I WAS GOING TO SAY
HAVING SOMEONE FROM THE CMS ON
THIS COMMISSION WOULD BE
HELPFUL.
SORRY TO INTERRUPT.
GO AHEAD.
>> I LIKE THIS DISCUSSION, WE
WERE TALKING BEFORE THE BREAK
ABOUT ENTITIES AND HOW AND WHEN
TO START TO ENGAGE THEM.
A COUPLE OF US HAVE BEEN PART OF
THEM, AWARE OF INDUSTRY TRIALS
THAT FAILED AND MAYBE WE SHOULD
DISCUSS OTHER FAILURES.
COMING TO MIND IN LYMPHATICS FOR
FAILURE ARE DIVERSITY AND
UNCLEAR STATEMENTS FOR OUTCOME
MEASURES AND WHAT CLEAR
DIAGNOSTICS ARE, SOME OF THIS
WHICH I KNOW MANY OF US, IT'S
OUR AGENDA BEFORE WE LEAVE, TO
HAVE A CLEAR DEFINITION OF WHEN
WE'RE TALKING ABOUT LYMPHATICS
AND THE SCOPE WE'RE WORKING
WITH, LYMPHATICKICS, LIKE
GUILLERMO DO YOU KNOW WHY THEY
ENDED UP FALLING OUT OF THEIR
SPECIFIC INTEREST WITH
LYMPHATICS?
>> REGENERON, THEY STARTED
EARLY, SOME OF THE FIRST THAT
REPORTED ANIMAL MODELS WITH
LYMPHATIC DISEASES.
LYMPHATIC MALFORMATIONS AND
DEFECTS.
THEY STAYED FOR A WHILE
INTERESTED ON THAT BUT I THINK
IT WAS PART OF SAME.
THEY SAW THE FIELD WAS MOVING
SLOWLY.
AT THAT TIME STILL IT WAS MOSTLY
TYPICAL LYMPHATIC DISEASES, THE
MARKET WAS SMALL AS MARK WAS
SAYING.
FOR THEM IT'S ALL ABOUT TIMING,
MONEY, HOW SOON I CAN GET A
PROFIT AND HOW LARGE WOULD BE
THE PROFIT.
AND I THINK NOW WE HAVE AN
OPPORTUNITY TO CONVINCE THEM
THAT THIS IS THE POSSIBILITIES
ARE MUCH LARGER BECAUSE THE
AFFECTED INDIVIDUALS MAY BE
PURPORTED NOT ONLY GROUP AS
WE'RE SAYING TYPICAL LYMPHEDEMA
PATIENT BUT A BROADER COMMUNITY
AFFECTED BY MALFUNCTION AND THAT
COULD OR SELLING.
>> YEAH, BRAIN FIELD, ON
COMPANIES LIKE SHIRE, DENALI,
THEIR ULTIMATE GOAL IS
ALZHEIMER'S AND PARKINSON'S, THE
HUGE EXPENSIVE LONG-TERM
DISEASES, ALSO IMPOSSIBLE HILLS
TO CLIMB OVER.
THEY ARE LIVING IN THE LYSOSOMAL
STORAGE PLACES, IF THEY HAVE
SOLVE THE BLOOD-BRAIN BARRIER
PENETRATION ISSUE THEY WIN IN
THAT TINY SPACE.
NOW, THAT'S A TINY, TINY, TINY
MARKET BUT IF THEY CAN BE
SUCCESSFUL THERE THEY SOLVE THE
BLOOD-BRAIN BARRIER PERMEABILITY
ISSUE AND CAN MOVE INTO THE
LARGER THING.
I WONDER IF THERE'S COUPLING IN
THIS CONVERSATION YOU CAN DO
BETWEEN PRIMARY LYMPHATIC
DISORDERS, WHERE IF YOU CAN SHOW
EFFICACY HERE IN THESE SMALLER
POPULATIONS DOWN THE ROAD THERE
IS A CONNECTION TO OTHER PEOPLE
WHERE THE MARKET IS MUCH LARGER,
MIGHT BE HARDER TO GET THERE
BECAUSE IT'S MORE DIFFUSE DID
YOU YOU CAN DEMONSTRATE EFFICACY
IN SMALLER SITUATIONS IS THERE A
MESSAGE?
>> CAN I COMMENT?
I SAID THIS A MILLION TIMES BUT
THE PROBLEM WITH LYMPHATICS,
THEY ARE SILENT.
WE CAN'T MEASURE LYMPHATIC
FUNCTION CLINICALLY AND SHOW
SOMEONE GOT BETTER, YOU KNOW,
WITH MEASURABLE NUMBERS THAT
REFLECT LYMPHATIC FUNCTION SO
WHEN I DO A LYMPHEDEMA SURGERY
WE MEASURE ARM CIRCUMFERENCE,
SECONDARY MEASURES.
CMS AND OTHER ENTITIES DON'T
REALLY ACCEPT THAT.
IF YOU HAVE A BLOOD PRESSURE
DRUG, YOU MEASURE BLOOD
PRESSURE.
YOU DON'T GO AND ASK THE PATIENT
IF THEY HAVE HEADACHES ANYMORE
BECAUSE THAT MAY BE SECONDARY TO
THE BLOOD PRESSURE.
THIS TECHNOLOGICAL ISSUE IS A
PROBLEM THAT AFFECTS ALL OF US.
FOR A DRUG COMPANY TO BE HAVE
HAD IN DEVELOPING LYMPHATIC
TREATMENTS FOR EXAMPLE TO TREAT
ALZHEIMER'S, YOU NEED TO BE ABLE
TO SHOW WHATEVER TREATMENT YOU
DID INCLUDED LYMPHATICS.
CURRENTLY WE DON'T HAVE THAT
ABILITY NON-INVASIVELY OR
MINIMALLY INVASIBLE.
IT'S A HUGE PROBLEM.
>> I AGREE WITH THE SENTIMENT.
THE ARPA-H INVESTMENT, IT IS
SOMETHING WE NEED TO BE TALKING
ABOUT.
I GUESS WHEN PEOPLE , THE
LYMPHATIC COMMUNITY BEING SMALL
OR NOT A BIG ENOUGH MARKET, I
PUSH BACK ON THAT.
THE NUMBERS, THEY SEEM LIKE
THERE'S A LOT, MILLIONS.
ALS HAS GOTTEN A LOT OF
ATTENTION RECENTLY WITH FAILED
DRUG TRIALS AND THAT'S 20,000
PATIENTS, NOT THAT IT'S A SMALL
NUMBER BUT A BIG ENOUGH MARKET
FOR INDUSTRY TO BE INTERESTED
IN.
SO I THINK WE ACTUALLY -- IT'S
NOT A SMALL MARKET ISSUE.
WE DON'T HAVE ANY, YOU KNOW,
TARGETS RIGHT NOW.
THERE'S NOT ANY OPPORTUNITIES
FOR THEM TO INVEST.
WE NEED TO CONVINCE BUT BUT WE
NEED THE RIGHT OPPORTUNITIES.
THERE ARE CLINICAL TRIALS GOING
OUT THAT HOPEFULLY BREAK THAT
BARRIER FOR US.
>> AND THE LAST QUESTION.
>> I WAS GOING TO SEE OF SAY
WHAT IF WE SHOW FOR EXAMPLE THAT
PATIENTS WITH DIABETES HAVE
IMPAIRED LYMPHATIC FUNCTION AND
IMPROVING THAT LIMB --
LYMPHATIC CAN HELP DID I BEATS,
COMPANIES WILL BE FALLING OVER
TO OVER.
THAT'S WHY COMPANIES ARE NOT
INTERESTED.
>> HERE IS ONE APPROACH.
SOMETHING I'M DOING, FINISHING
AN OBSERVATIONAL STUDY AS
COMPARATIVE TO RANDOMIZED TRIAL.
WE'RE JUST OBSERVING WITH
IMAGING, GATHERING BLOOD,
LOOKING AT PLASMA BIOMARKERS
ALONG THE WAY AND COULD PROPOSE
MORE OBSERVATIONAL STUDIES
COLLECTING SAMPLES FOR MAYBE
FUTURE TESTING BUT IT'S ONE WAY
TO PROVIDE SOME EVIDENCE, YES,
HERE ARE IMAGES BEFORE THE
SURGERY AND AFTERWARD, LOOK HOW
THEY ARE DIFFERENT, AND HERE ARE
SOME BIOMARKERS FROM BEFORE AND
AFTER AND COMPARE THEM.
IT'S NOT AS PERFECT AS A
RANDOMIZED TRIAL BUT IT'S
SOMETHING AND MIGHT BE
CONVINCING TO THE INSURERS AND
OTHER PEOPLE.
>> THE LAST DISCUSSION IS A
FANTASTIC SEGUE TO THE LAST
COMMITTEE REPORT WHICH IS
MEASURE OF POLAR RESULTS
COMMITTEE.
WE'VE EATEN INTO YOUR TIME BUT
THANK YOU, MELISSA, FOR TAKING
THE PODIUM.
>> I WAS IN A CHECK OUTLINE, THE
CASHIER, THERE WAS NO CHECK ON
THE STATUS.
I WILL QUOTE ANOTHER BOOK
WRITTEN BY A NEIGHBOR, A
PSYCHOLOGIST, IF YOU CAN'T PUT A
NUMBER ON SOMETHING IN RESEARCH,
IT DOES NOT EXIST.
SO, WE WANT TO EXIST.
WE WANT PEOPLE TO KNOW WE EXIST.
WE ENVISION A FUTURE IN
QUANTIFIABLE FORM AND CAN
MEASURE HOW THINGS MIGHT BE
IMPROVING WITH OUR EFFORTS AS A
COMMISSION, AND ALSO INVITE
COLLABORATORS, INVESTMENT, AND
ULTIMATELY GAUGE OUR SUCCESS
QUANTITATIVELY.
NEXT SLIDE PLEASE.
A COUPLE SLIDES ON WHY.
WE WANT TO HELP OTHER GROUPS,
THERE AREN'T ANY GUIDES.
WE WANT TO COME UP WITH SOME
WAYS TO MEASURE WHAT YOU'RE
DOING.
IT'S REALLY IMPORTANT BECAUSE
THROWING MONEY MAY NOT IMPROVE
PATIENT CARE, WHICH IS THE
BOTTOM LINE.
AND WE ARE TRYING TO SET UP
QUANTITATIVE ACCOUNTABILITY
SYSTEM TO VALIDATE IN A TIMELY
GOAL-MEETING MANNER.
NEXT SLIDE.
SO, WE WANT TO COME UP WITH A
WORKING ALGORITHM OR ALGORITHM
OR INFRASTRUCTURE THAT WILL
SERVE THE OTHER GROUPS AND OTHER
PEOPLE IN THE DISEASE COMMUNITY
EVEN AFTER OUR WORK IS DONE AS A
COMMISSION, WE WANT TO SHOW THAT
FIRST OF ALL WE KNOW WHAT THE
LYMPHATIC SYSTEM IS DOING.
WHAT OTHER DISEASES ARE WE GOING
TO TRY AND MEASURE LYMPHATICS IN
AND WE'LL ACHIEVE THAT GOAL WHEN
WE'VE MET SHORT-TERM AND
LONG-TERM GOALS, ESPECIALLY WORK
TO PUT THAT IN CONCRETE TERMS.
AND PAULA MENTIONED THIS IS
SOMETHING CAUGHT IN MBA SCHOOL
AS A WAY TO -- IT'S A RUBRIC, OR
ACTUALLY STEP ON IT
WHAT IS THIS?
YOU GUIDE YOUR THINKING PROCESS
INTO LIKE BREAKING DOWN THE TASK
INTO STEPS AND EVALUATE YOUR
OUTCOMES, IMPROVE IT, TEST IT
AGAIN.
WE WANT TO DEVICE SOMETHING LIKE
THAT, THAT COULD WORK FOR THE
OTHERS.
NEXT SLIDE PLEASE.
SO, WE WANT TO LOOK AT OUR
LEARNING PLANS, WE WANT TO
REALLY UNDERSTAND INDIVIDUAL
GOALS OF EACH OTHER
SUBCOMMITTEES, WE'RE JUST
BASICALLY A SERVICE COMMITTEE TO
OTHER COMMITTEES.
WE WANT TO HAVE VERY GOOD
UNDERSTANDING OF FIRST OF ALL
LYMPHATIC DISEASES AND COME TO
CONSENSUS ON MEASURING LYMPHATIC
FUNCTION AND ALSO HOW TO
IDENTIFY PATIENTS AND ASSESS
THEIR FUNCTION.
WE NEED TO SET UP OUR INCHES AND
FEET, UNITS OF MEASUREMENT, AND
LOOK AT OTHER RELEVANT SYSTEMS
OF MEASURING AND REPORTING
RESULTS, MAY COME FROM THE
BUSINESS FIELD, MAY COME FROM
MARKETING COMMUNITIES, TO
SOMEHOW THE MECHANICS OF
RECORDING INFRASTRUCTURE HELD
ACCOUNTABLE AND WE CAN MEASURE
THAT, MEASURE THAT SUCCESS.
NEXT SLIDE PLEASE.
OKAY.
WE MAY INCLUDE SOME EXPERTISE
FROM GROUPS OUTSIDE OF OUR
COMMISSION.
AND THAT MAY HELP US UNDERSTAND
HOW OUR SUBGROUPS ARE POSITIONED
WITHIN THE COMMISSION.
WE WANT GROUPS THAT ARE ENGAGED
IN OTHER ENTERPRISES, OTHER
DISEASES, HOW DO THEY MEASURE
THINGS, HOW DO WEI THEY DEVICE
METRICS THAT COULD HELP US TO
DEVELOP A UNIFORM WAY OF
MEASURING THINGS.
AND AGAIN WE KEEP COMING UP WITH
THE RECURRING THING OF OTHER
LYMPHATIC FIELDS.
NEXT SLIDE PLEASE, IF THAT'S
OKAY.
WE'VE HAD A LOT OF BARRIERS.
WE'VE NEVER DONE THIS BEFORE.
WE HAVE A SMALL COMMITTEE.
WE'RE NOT SURE WHERE WE WANT TO
SET BOUNDARIES ON LYMPHATIC
DISEASES, WE CAN'T COVER
EVERYTHING IN THE HUMAN BODY.
WE ALREADY KNOW THERE ARE
SPECIFIC DISEASES IN THE
LYMPHEDEMA AREA AND EXPAND UNTIL
WE ACHIEVE OUR GOALS.
HERE IS ANOTHER BARRIER.
SOMETIMES THERE IS NOMENCLATURE
PROBLEM.
DATA SHARING IS A BIG ONE.
WE HAVE RESEARCHERS THAT OPERATE
IN SILOS AND I WOULD SAY THEY
ARE COMPETITIVE SILOS.
WE HAVE TO PROMOTE MORE
COLLABORATION AMONG STAKEHOLDERS
AND WE WANT TO OVERCOME THE
FRAGMENTED PERSPECTIVES OF --
CAN WE GO BACK TO THE PREVIOUS
SLIDE?
YEAH, FRAGMENTED FUNCTION.
PEOPLE FOCUS MOSTLY ON THE
PHYSIOTHERAPY SIDE OF THINGS,
PEOPLE LOOKING AT IMMUNOLOGY OR
SURGICAL APPROACHES, AND WE NEED
TO SOMEHOW DECIDE HOW WE'RE
GOING TO INTEGRATE ALL OF THOSE
PERSPECTIVES INTO DEVELOPING
METRICS WE CAN USE TO MEASURE
OUTCOMES.
NEXT SLIDE NOW.
WE NEED TO LOOK AT COMMUNITIES
NEED TO MEASURE FIRST, WE NEED
SUPPORT INPUT FROM OTHERS
INCLUDING MEDICAL ORGANIZATIONS,
LAM ORGANIZATIONS, CONFERENCES,
YOU CAN READ THESE, PATIENTS AND
CAREGIVERS, INSURANCE PROVIDERS,
PHARMACEUTICAL COMPANIES, AND WE
NEED BUY-IN FROM OTHER
SUBCOMMITTEES, PROBABLY GO
THROUGH ITERATIVE PROCESS WHERE
WE ASK SUBCOMMITTEES DO YOU
THINK THIS WOULD WORK FOR WHAT
YOU'RE TRYING TO MEASURE, YES OR
NO, AND GO BACK TO THE DRAWING
BOARD IF THE ANSWER IS NO.
NEXT SLIDE PLEASE.
SO, HERE'S THE PLAN.
WE WANT TO START WITH SOME
CHARTS FOR WHAT KIND TO COLLECT
AND HOW TO MEASURE AND HOW WE'RE
GOING TO TRACK THE PROGRESS.
AND THEN I THINK LIKE AN EXAMPLE
WOULD BE WHAT INCREASE IN
LYMPHATIC DISEASE AWARENESS CAN
WE MEASURE.
IN THE GENERAL PUBLIC OR WITHIN
PATIENT POPULATIONS.
WE WANT TO ASSIGN COMMITTEE
MEMBERS TO LOOK FOR MEASURES,
WE'LL HAVE TO GO OUTSIDE OF OUR
BOX AND LOOK AT RUBRICS AND
METRICS USED IN OTHER FIELDS
SUCH AS THE ONE MENTIONED
EARLIER AND DESCRIBED.
IT MAY NOT BE APPLICABLE TO ALL
SUBCOMMITTEES AND MAY HAVE A
METRIC FOR EACH SUBCOMMITTEE,
THAT'S OKAY.
AND DATA ACCESS, THE BIGGEST
BARRIER IS BASELINE VALUES TRUE
WHEN SOMEONE IS GOING THROUGH
CANCER TREATMENT, HAVEN'T GONE
THROUGH BASELINE MEASURES, WE
NEED TO START AND SEE IF WE'RE
SUCCEEDING.
WE WANT TO LOOK AT SOME WAY TO
DISSEMINATE OUR RESULTS TO OTHER
PEOPLE AND MAKE SURE THAT THE
WAY THAT WE FORMULATE IT TO
MEASURE THEM WILL EFFECTIVELY
COMMUNICATE SUCCESS OR FAILURE.
NEXT SLIDE PLEASE.
SO, IMMEDIATELY WE'RE GOING
TO -- NEXT YEAR WE'LL START TO
LOOK FOR PUTTING TOGETHER
PRELIMINARY ANNUAL REPORTING
STRUCTURE FOR ACCOUNTABILITY AND
TRACKING SO THAT'S BEYOND THE
SERVICE OF OUR COMMITTEE HERE SO
ALONG, YOU KNOW, TWO YEARS FROM
NOW HOW WE TRACK HOW OUR
PROGRESS IS GOING.
WE WANT TO HAVE PRELIMINARY
REPORT READY BY MAY, 2025,
FORMAL REPORT AFTER THAT, AND WE
WANT TO PROCESS, CONTINUALLY
MONITOR WHETHER WE'RE SUCCEEDING
OR FAILING.
AND COME UP WITH METHODS TO GET
OVER BARRIERS.
NEXT SLIDE PLEASE.
WE MIGHT WANT TO HAVE AN
ORGANIZATION THAT'S AN
ACCOUNTING ORGANIZATION THAT
TELLS US HOW WE'RE DOING AND NOT
DOING TOO WELL.
WE WANT TO MAINTAIN
CONNECTEDNESS IN THE FIELD AND
EVEN MEASURE CONNECTEDNESS.
AND BOTTOM LINE WE WANT TO
BETTER QUANTITATE HOW PATIENTS
ARE BEING DIAGNOSED AND TREATED.
NEXT SLIDE PLEASE.
AND I WOULD FOCUS HERE ON THE
JUNE AND SEPTEMBER TOP ROW
THINGS, WHAT WE'RE AIMING FOR
NOW.
WE WANT A PRELIMINARY ANNUAL
REPORTING STRUCTURE SO WE'RE
GOING TO TRY TO CRAFT THAT
STARTING WITH PRELIMINARY
VERSION AND HOW WE CAN EDIT IT.
WE WANT AUDITED GOALS TO MEASURE
HOW WE'RE GOING TO SEE ABOUT
GAPS AND COME BACK OVER AND OVER
WITH DEFINITION OF LYMPHATIC
DISEASE, HOW ARE WE GOING TO
DETERMINE WHAT WE'RE -- WHAT
WE'RE GOING TO MEASURE.
IN SEPTEMBER WE NEED TO HAVE AN
INTERIM REPORT MEETING FOR OUR
MEETING THERE.
HOPEFULLY BY THEN WE'LL HAVE
CONSENSUS ON WHAT DISEASES WE'RE
GOING TO INCLUDE IN THE LD FOLD.
AND THEN WE WANT TO MAP OUT A
NETWORK, WHO KNOWS WHAT, GET
SOME INFORMATION FROM THEM.
AND THE REST IS YEAR TWO.
WE STARTED WITH A LIST OF SOME
THINGS TO DO TO DO, PEOPLE TO
CONTACT TO DO THAT.
I HOPE I FINISHED IN TIME.
I RUSHED THROUGH.
>> THANK YOU FOR DOING THAT.
THIS IS A GROUP CONNECTED TO
EVERY OTHER GROUP.
I HOPE HEARING THE GOALS OF THE
OTHER COMMITTEES IS HELPFUL FOR
THE MEASURABLE RESULTS TEAM.
ANY FEEDBACK QUESTIONS, COMMENTS
FOR THIS GROUP?
>> THIS IS GOING TO BE VERY
DIFFICULT TO MEASURE BECAUSE WE
STILL YET TO DEFINE IT SO
BARRIERS ARE HARD.
I WAS GOING TO ASK AND I DIDN'T
HEAR MUCH ABOUT THE IDEA THAT
ALL THE DISEASES ARE NOT
U.S.-CENTRIC BUT EXIST AROUND
THE WORLD.
ONE THING IS NOT ONLY GOING TO
INVESTIGATE WHAT'S LEARNED FROM
OTHER DISEASES BUT WHAT CAN WE
LEARN FROM OTHER COUNTRIES.
WHILE THE HEALTH CARE SYSTEM MAY
HAVE ITS PECULIARITIES IN THE
UNITED STATES, THAT'S PART OF
THE SOLUTION HOW TO LEARN, BUT
THERE ARE PHYSICIANS AND I THINK
WE MET SOME IN THE WORKSHOPS WE
ORGANIZED FROM SOUTH AMERICA,
FROM EUROPE, RESEARCHERS,
THERE'S A LOT GOING ON ACROSS
THE WORLD.
AND HOW OTHER COUNTRIES DEAL
WITH THIS MAY BE INTERESTING OR
WE GET GOOD INFORMED, YOU KNOW,
WHAT WE'RE TRYING TO FIGURE OUT.
IT WOULD ALSO SHOW THE INDUSTRY
SINCE WE ARE TALKING ABOUT THE
SIZE OF THE MARKED THAT THE
MARKET IS PROBLEM ABLE MUCH
WIDER, A MUCH LARGER MARKET.
IN DISCUSSION ABOUT THE INDUSTRY
I WANTED TO SAY THE FIRST THING
YOU EVER HAVE TO PROVE WHEN
YOU'RE WORKING IN THE INDUSTRY,
SOME OF YOU KNOW I WORKED FOR
YEARS, CHIEF SCIENTIFIC OFFICER
FOR SCIENTIFIC RESEARCHER FOR A
LARGE COMPANY, YOU HAVE TO SHOW
ROI, RETURN ON INVESTMENT.
THERE'S A FORMULA, HOW BIG IS
THE MARKET, HOW MUCH IT WILL
COST US TO GET THERE, HOW LONG
IT WILL TAKE AND SO FORTH.
THAT'S A HUGE HURDLE.
ON THE OTHER HAND, COMING BACK
TO MY CURRENT POSITION HERE, ONE
OF THE REASONS I CAME HERE,
NHLBI WILL HELP YOU DE-RISK YOUR
IDEAS, IF YOU HAVE GOOD IDEAS
FOR DIAGNOSTICS OR MEDICATIONS,
ANYTHING, IT'S MUCH LESS ABOUT A
QUESTION OF HOW MUCH MONEY ARE
WE GOING TO MAKE FROM THIS, BUT
HOW IMPORTANT IS THIS DISEASE,
HOW CAN WE HELP DE-RISK, SO
INDUSTRY WILL BE INTERESTED.
WE STILL HAVE THE QUESTION OF
THE SIZE OF THE MARKET WHEN IT
COMES TO INDUSTRY BUT GETTING
STARTED, ALL GREAT IDEAS, THAT'S
PART OF I THINK ASKING SHOULD
THIS BE PART OF THE SCIENTIFIC
COMMITTEE, WE HAVE ALL KINDS OF
MECHANISMS, THERE'S EVEN I THINK
A CALL ON THE MARKET FOR -- ON
THE STREET FOR THE RARE
DISEASES, SO NHLBI WILL SUPPORT
INVESTIGATION IN RARE DISEASES,
THEY ARE NOT GOING TO BE UPSET
IF THERE ARE ONLY A THOUSAND
PEOPLE WHO HAVE THIS DISEASE.
IT MAY BE VERY INFORMATIVE FOR
THE REST OF THE MILLIONS.
PLEASE DON'T FOR THAT.
>> LYMPHEDEMA COULD BE
CLASSIFIED AS A RARE DISEASE, SO
VERY MUCH WITHIN THE PURVIEW LET
ALONE THE MUCH MORE RARE --
>> THAT'S BECAUSE WE CAN USE THE
FACT WE DON'T KNOW HOW MANY --
>> I WAS GOING TO SAY IN TERMS
OF MEASUREMENT, I THINK ONE
INITIAL CLEAVAGE POINT, DO YOU
WANT TO DEAL WITH DEFINITION OF
DISEASE FROM SUBJECTIVE
PERSPECTIVE, WITH DISEASE
ASCERTAINMENT?
IF THE LATTER WE'LL HAVE TO GET
INTO HEALTH CARE DATABASES AND
THIRD-PARTY PAYER OUTCOME AS
OPPOSED TO ASKING PEOPLE TO
QUEUE UP AND SAY AS A CLINICIAN
THERE ARE MANY PEOPLE WHO DEFINE
THEMSELVES HAVING LYMPHATIC
DISEASE I CANNOT ASCERTAIN THE
DISEASE.
SO, THAT'S A DISCRIMINATING
POINT TO START WITH.
WE MIGHT START WITH THE MORE
OBJECTIVELY VALIDATABLE SUBSETS,
WHETHER BY IMAGING, EVEN BY
OBJECTIVE DIAGNOSIS, BY ICD-10
CODE.
>> ANSWER SMALL WITH
CANCER-RELATED IMTAMPA DEEM --
LYMPHEDEMA.
WE HAVE CENTERS OF EXCELLENCE
ALL OVER THE WORLD, WE COULD TRY
TO ESTABLISH A QUESTIONNAIRE TO
SEND TO SOME OF THOSE PEOPLE TO
SEE IF WE CAN PROBE OUT SOME
DATA FROM THEM THAT MIGHT BE
USEFUL TO DETERMINE AND PRESENT
TO INDUSTRY HERE LOOK HOW BIG
THIS PROBLEM IS, THESE ARE
NUMBERS THAT WE THINK ARE -- AND
THIS IS THE IMPACT ON HEALTH
CARE SYSTEMS, THIS IS HOW MUCH
IT'S COSTING PATIENTS, IT'S
COSTING PARTICULARLY WHERE THEY
HAVE -- WHAT DO YOU CALL IT?
STATE-RUN MEDICINE.
THEY HAVE REALLY GOOD RECORDS.
THAT'S A SOURCE OF INFORMATION.
>> JUST IN TERMS OF DISCUSSION
OF THIS GROUP I WANT TO NOT PUSH
THIS BACK INTO THE TUBE BUT JUST
CONTEXTUALIZE IT.
THIS GROUP, THE MEASURABLE
RESULTS GROUP, THE NAME IS
UNFORTUNATE BECAUSE MY
UNDERSTANDING IS SO WE DON'T
ACTUALLY HAVE A THING WE DO.
WE'RE A GROWING THAT DOESN'T DO
ANYTHING EXCEPT WE LIVE IN ALL
THE OTHER GROUPS, WE'RE LIKE
JIMINY CRICKET ON THE SHOULDER
SAYING, "NOBODY'S GOING TO
MEASURE THAT, HOW WILL YOU KNOW
IF THAT ACTUALLY WORKS," RIGHT?
SO I THINK CLEARLY THE MARKET
SIZE, THE DISEASE BURDEN, NUMBER
OF PEOPLE WHO ARE SUBJECT TO
THESE CONDITIONS AND THE
DIFFERENT CHRISTIANS AND WHICH
CONDITIONS, THAT'S CLEARLY A
QUESTION THAT A COUPLE OF THE
OTHER COMMITTEES ARE GOING TO
NEED TOE HAVE.
THAT'S ONE OF THE QUANTIFIABLE
THINGS THAT THEY WILL HAVE TO
ASCERTAIN.
OUR JOB IS TO TELL YOU TO DO
THAT WHICH YOU ALREADY KNOW YOU
NEED TO DO.
IT'S MORE LIKE AT THE BEGINNING
HOW DO WE KNOW THAT THE THINGS
WE DO IN THE PATIENT ACCESS, IN
THE THIRD-PARTY PAYER AND
SCIENTIFIC SPACE, HOW DO WE
ACTUALLY KNOW WE'RE MEASURING
THE RIGHT THINGS, HOW DO WE KNOW
OUR INTERVENTIONS -- BECAUSE
WE'RE GOING TO PROPOSE A BUNCH
OF INTERVENTIONS, HOW DO YOU
KNOW THEY ARE EFFECTIVE?
AND WHEN WE FIND OUT THIS THING
WE THOUGHT WOULD WORK DOESN'T,
WHAT DO WE DO THEN?
IN THE FUTURE WHEN THERE'S A
DURABLE BODY OR SITUATION THAT
LIVES IN THE FUTURE WHAT IS ITS
ITERATIVE PROCESS FOR
REAASSESSING PRIORITIES AND
MEASURING EFFICACY.
IT'S A MET A-GROUP, WE GET TIED
UP IN WHAT IS LYMPHATIC
FUNCTION, A MEASURABLE THINGS,
BUT ALL THE GROUPS ARE GOING TO
HAVE TO TACKLE.
>> ONE COMMENT, EVERYTHING
YOU'RE SAYING IS BEAUTIFUL.
WHAT I UNDERSTAND FROM MY
PERSPECTIVE, WE WILL -- THIS
GROUP WILL CREATE A REPORT AT
THE END OF OUR LIFESPAN THAT
GOES TO THE ADVISORY COUNCIL
THAT MAY OR MAY NOT BE
IMPLEMENTED INCLUDING WHAT ARE
THE MEASURES THAT WILL BE
UTILIZED.
EVERYTHING WE'RE TALKING ABOUT
IS IN A WAY FUTURISTIC.
WE'LL NOT GET RETURN ON THOSE
QUESTIONS AS AN ENTITY CAN YOU
CAN PROPOSE A WAY TO MEASURE THE
THINGS WE'RE PROPOSING.
>> JUST I FEEL THAT FOR THE
MEASURABLE OUTCOMES WE NEED TO
BE DEFINING SUCCESS.
SCIENTIFIC ADVANCEMENT, WHAT IS
A SUCCESSFUL IMPLEMENTATION OF
THE ROAD MAP, WHAT DOES IT LOOK
LIKE?
WITHOUT THAT IT'S -- HOW WILL
YOU MEASURE THAT SUCCESS.
BY DEFINING WHAT WE CONSIDER
SUCCESS, HOPEFULLY THAT OUTCOME
BECOMES -- SO UNTIL WE AS A
COMMISSION SORT OF DEFINE THOSE
SUCCESSFUL THINGS WE'RE NOT
GOING TO BE ABLE TO MEASURE
ANYTHING, RIGHT?
PART OF THE CHARGE FOR TODAY AND
THE ONGOING WORK.
>> SO TO ILLUSTRATE THE POINT,
TWO DISEASES RIGHT NOW,
(INDISCERNIBLE).
ONE IS EASY.
WE CAN MEASURE LEVEL.
WE'RE VERY GOOD THERE.
IT COULD BE A HUGE MARKET, 30%
OF PATIENTS IN HOSPITAL HAVE LOW
ALBUMIN.
THEN WE HAVE ANOTHER DISEASE, WE
DISCOVERED ACCIDENTALLY,
PATIENTS WERE VERY SICK, WE
FIGURE OUT OBSTRUCTED, TO OPEN
IT UP, WE START TO GET A LOT OF
PATIENTS, 30% OF IN THIS
COUNTRY, STUDIED IN ENGLAND,
(INDISCERNIBLE).
FROM THE SEVERE DISEASES STARTED
TO GET INTO THE KIND OF ON THE
BORDER, BLOATING, EDEMA, AND
WE'RE LOST RIGHT NOW, TOTALLY
LOST.
WE DO THE PROCEDURES, PEOPLE ARE
SAYING CHANGE THEIR LIVES BY WE
DON'T HAVE OBJECTIVE, PLACEBO
VERSUS PLACEBO.
SOME PEOPLE WHO CARES, THE
PATIENT GOT BETTER?
REALLY, REALLY TO ILLUSTRATE HOW
DIFFICULT UNLESS WE HAVE
IMAGING WHERE WE CAN SEE
IMPROVED FLOW AND THEN SOME
TYPE.
>> I SEE TO THAT POINT A BIG
CHALLENGE THAT MAYBE THIS GROUP
NEEDS TO ADDRESS, THERE'S THE
ACTIONABLE LYMPHATIC DISEASES WE
KNOW OF THAT THIS COMMISSION IS
CHARGED WITH, AND THE PATIENT
POPULATION HAS BEEN SO
MARGINALIZED BUT THERE'S A
COMPONENT OF THE COMMITTEE THAT
SHOULD BE VISIONARY, THINGS WE
DON'T KNOW OF, DIFFICULT TO
MEASURE, WE CAN'T MEASURE
LYMPHATIC DISEASES WE'RE
STARTING TO UNDERSTAND THE ROLE
OF THE LYMPHATICS IS THE
CARDIOVASCULAR SYSTEM, ET
CETERA.
I STRUGGLE WITH MEASURABLE
OUTCOMES FOR PEOPLE WE NEED TO
HELP NOW BUT DON'T WANT TO LOSE
VISIONARY ASPECTS, THE
OPPORTUNITY TO DO THAT.
HOW DO WE PUT THAT INTO
SOMETHING MEASURABLE, BRINGING
UP SOMETHING I I DON'T --
>> THAT'S AN IMPORTANT POINT.
WHAT I WOULD DO IS REGRESS
BACKWARDS TO WHAT IS SOMETHING
THAT IS MEASURABLE THAT COULD
LEAD TO THAT VISIONARY STATE,
AND THAT COULD BE THINGS LIKE
PENETRATION INTO MEDICAL
SOCIETIES, EVANGELIZING OF
MEDICAL SCHOOL CURRICULA,
REFLECTING CASTING OF NET
OUTWARD BUT STILL QUANTIFIABLE,
NOT DIRECTLY CONNECTED TO
PATIENT OUTCOMES.
>> I'M SAYING BUILD A TEMPLATE
TO START SMALL WITH THINGS WE
KNOW, LYMPHEDEMA, CANCER-RELATED
LYMPHEDEMA AND DEVELOP METRICS
FOR THAT, THAT MIGHT BE A
TEMPLATE FOR VISIONARY THINGS.
>> YEAH, I REALLY DON'T WANT TO
LOSE TRACK OF THE OTHERS.
I'M SORRY ON THAT.
NO, BECAUSE I KNOW WHAT'S GOING
TO HAPPEN.
EVENTUALLY NOTHING IS GOING TO
HAPPEN.
I'VE SEEN THAT VERY OFTEN.
THE OPPORTUNITY TO EXPAND WHAT
WE'RE DOING, I REALLY INSIST ON
THAT.
GOING TO MAX, I'M CONFUSED,
THERE'S NO MEASURABLE OUTCOMES.
IF SOMEBODY HAS LYMPHEDEMA, IF
YOU SEE YOU TREAT NO MATTER HOW,
BUT LYMPHEDEMA IS REDUCED,
THAT'S A MEASUREMENT.
>> FOR ME TALKING ABOUT FOR SURE
THE PATIENT TELL YOU WITHIN TWO
WEEKS I LOST 20 POUNDS, WE
BELIEVE THAT, RIGHT?
OTHER PEOPLE HAVE JUST BLOATING,
BLOATING PAIN, THAT'S FOR
EXAMPLE VERY HARD TO MEASURE.
ACCORDING TO THEM WE CHANGED
THEIR LIFE, THEY FEEL MUCH
BETTER, WE DON'T KNOW IF IT'S
TRUE OR JUST IN THE HEAD.
BABAK WILL TELL YOU EVEN THAT IS
VERY DIFFICULT.
NOT STRAIGHTFORWARD.
>> BECAUSE THE MEASUREMENT IS
SOMEWHAT SUBJECTIVE AND YOU CAN
HAVE ERRORS WITH THE
MEASUREMENT.
IT'S NOT AN AUTOMATED
MEASUREMENT THAT YOU CAN DO.
BUT IT'S NOT GREAT.
ALSO, FOR THE VOLUME TO DECREASE
IN LYMPHEDEMA, THAT'S THE LAST
THING THAT HAPPENS, THE LAST
STEP IN THE PROCESS.
THEY MAY FEEL BETTER, A LOT OF
PATIENTS DO, BUT VOLUME MAY NOT
CHANGES.
THAT'S AN ISSUE.
>> THEN WE HAVE A REALLY
DIFFICULT TASK BECAUSE WE HAVE
BEEN DISCUSSING ABOUT MEASURES
OF SUCCESS AND WHAT YOU GUYS ARE
TELLING US KEY CAN'T MEASURE
IMPROVEMENT UPON PATIENTS WITH
SOME TYPE OF --
>> OBJECTIVE.
>> THAT'S WITH EVERYONE,
INSURANCE COMPANIES, SO HOW DO
WE OVERCOME THAT.
>> IT'S INTERESTING, THE FDA ON
THE OTHER HAND IS MOVING TO
SUBJECTIVE IMPROVEMENTS FOR
APPROVAL.
THEY SAY WHAT DOES THE PATIENT
CARE IF HEMOGLOBIN WENT FROM 12
TO 11 IF THEY CAN'T FEEL IT?
BUT IF IT GOES FROM 8 TO 3 ON
SYMPTOM SCALE, THAT'S IMPORTANT,
RIGHT?
THE SUBJECTIVE THINGS ARE NOT
IRRELEVANT.
>> YOU CONVINCE TO MOVE FROM
FROM --
>> A GOOD THING.
>> I COULDN'T ARGUE,
(INDISCERNIBLE), PATIENT COMES
TWO WEEKS LATER, THEY WILL TELL
ME SHE'S IMPROVE SIGNIFICANTLY
BECAUSE I HAVE ANOTHER
(INDISCERNIBLE) ABSOLUTELY
CHANGED MY LIFE.
WE DON'T HAVE OBJECTIVE
MEASUREMENTS, THAT BOTHERS ME A
LOT.
>> I THINK MEASUREMENTS WILL BE
DIFFICULT FOR PATIENT TREATMENTS
BUT I THINK FOR COMMUNITY GROWTH
AND PATIENT EDUCATION WE CAN
DEFINITELY MEASURE WHETHER OR
NOT WE'RE MAKING AN IMPACT THERE
SO YOU'RE RIGHT, GUILLERMO,
TREATMENT WILL BE TRICKIER TO
MEASURE SUCCESSFUL OUTCOMES BUT
I THINK FOR SOME OTHER
SUBCOMMITTEES IT WILL BE AN
EASIER TASK.
>> ALSO WILL IT BE POSSIBLE FOR
YOU GUYS, CLINICIANS, SOMEHOW TO
MAKE A LIST WHAT ARE THE
AVAILABLE TREATMENTS AT THE
MOMENT FOR PATIENTS WITH ANY
TYPE OF LYMPHATIC MALFUNCTION?
FOR SCIENTISTS LIKE ME, MASSAGE,
THE GARMENTS, IS THERE ANYTHING
ELSE --
>> IT DEPENDS ON SUBSET OF
LYMPHATIC DIAGNOSIS.
>> RIGHT, RIGHT, BUT MAYBE JUST
TO HAVE -- I DON'T THINK WE'VE
BEEN TO.
>> IT'S NOT MANY, MANY.
>> FOR WOULD BE USEFUL FOR
PATIENTS, FOR US, WHAT CAN BE
IMPROVED, HOW OFTEN --
>> THERE'S TONS OF PAPERS ON
SYSTEMATIC REVIEWS FOR TREATING
LYMPHEDEMA, INCLUDING SEVERAL
FROM OURS SHOWING OUTCOMES FROM
DIFFERENT SURGICAL PROCEDURES,
BYPASS, LYMPH NODE TRANSPLANT,
LIPOSUCTION, ET CETERA.
THOSE PAPERS ARE OUT THERE FOR
SURE.
THERE'S LOTS OF THEM.
GOOD QUALITY PAPERS.
>> HOW DID YOU MEASURE THE
SUCCESS BASED ON WHAT THESE GUYS
WERE SAYING?
>> YOU KNOW, IT'S MEASUREMENTS
COMMONLY ACCEPTED FOR TREATING
LYMPHEDEMA, VOLUME, ALDEX,
PATIENT-REPORTED SYSTEMS, THINGS
LIKE THAT.
>> THE OUTCOMES AND MEASURES,
CLINICALLY A LOT OF CLINICIANS,
HERE AND NOT HERE UNDERSTAND
HETEROGENEOUS COMPONENTS.
SOMEBODY COULD HAVE A REDUCTION
IN VOLUME, WONDERFUL AND
MEASURABLE, ANOTHER PERSON WHO
HAS SUCCESS FROM SURGICAL
OUTCOMES LET'S SAY WON'T HAVE
THE SAME AMOUNT OF VOLUMETRIC
REDUCTION.
HOWEVER, WE GET INTO SOME
PATIENTS, MAYBE IT MIGHT BE
BIOPEAKS OR SOMETHING
SUBJECTIVE, BUT QUITE A
HETEROGENEOUS GROUP.
THAT'S THE CHALLENGE.
THAT'S WHAT I RAN INTO IN THE
PHARMACEUTICAL END, IT'S NOT AS
SIMPLE AS WE'RE GOING TO USE
VOLUME, THERE WE GO.
IT'S HARD AND CHALLENGING.
>> FROM THE POINT OF VIEW OF
INDUSTRY YOU NEED TO
DEMONSTRATE YOU HAD TO HIT YOUR
TARGET.
HAVE
YOU HAVE TO PROVE YOU HIT THAT
TARGET.
AS BABAK SAID, IT'S A SECONDARY
TYPE OF BIOMARKER, YES, EDEMA
DECREASE, BUT THE QUESTION IS
DID IT DECREASE BECAUSE YOU
ACTUALLY HIT THE TARGET YOU TOLD
ME YOU WERE GOING TO HIT, FROM
THE POINT OF VIEW OF INDUSTRY.
HOWEVER, I WANT TO SAY WE HAVE A
LOT OF CLINICAL TRIALS NOW THAT
MEASURE QUALITY OF LIFE.
SO I THINK FDA THEY ARE MUCH
MORE INTERESTED IN
PATIENT-REPORTED OUTCOMES, THESE
ARE NOT NECESSARILY VERY
SCIENTIFIC, JUST FEEL BETTER,
THEY CAN WALK MORE, SLEEP
BETTER, EAT WHATEVER THEY WANT.
THERE ARE ALL KINDS OF
QUESTIONNAIRES THAT COULD BE
DEVELOPED TO MEASURE WHAT
PATIENTS ARE LOOKING FOR AND
WHETHER YOU IMPROVE THEIR LIFE,
WHETHER OR NOT YOU CAN MEASURE
SOMETHING EXTREMELY SPECIFIC.
SO, WE HAD CLINICAL TRIALS IN
WHICH ACTUALLY TECHNICALLY ONE
INTERVENTION WAS MORE SUCCESSFUL
THAN ANOTHER, WAS A SURGICAL
TRIAL, RANDOMIZED AND SO FORTH,
THE INTERVENTION WAS MORE
SUCCESSFUL YET THE PATIENT
PREFERRED THE OTHER ONE, THEY
FELT IT WORKED BETTER FOR THEM.
I HAVE TO SAY WAS EXERCISE
VERSUS SURGERY.
STRANGELY ENOUGH, PEOPLE PREFER
SURGERY, ALTHOUGH THE RESULT OF
EXERCISE WAS BETTER BUT THEY HAD
TO WORK THROUGH PAIN.
WHAT I'M SAYING, IT'S A THING,
YOU CAN MEASURE TECHNICAL
SUCCESS AND QUALITY OF LIFE AS
PERCEIVED BY THE PATIENT.
JUST A SUGGESTION.
>> THERE'S ANOTHER -- OH, SORRY.
>> PIGGYBACKING OFF THAT, WHEN I
GO IN FOR MANUAL LYMPH DRAINAGE
IN THE PAST, I WILL TAKE A
QUESTIONNAIRE BEFORE TREATMENT
AND AFTER TREATMENT.
AND THEN WHEN I HAD SURGERY,
THERE WAS IMAGING DONE, LIKE ON
LYMPHATIC FLOW, MEASUREMENTS
TAKEN.
THERE IS DATA.
I CAN ONLY SPEAK TO MY
EXPERIENCE, I'M NOT SURE IN
OTHER PLACES, HOW WELL DATA IS
TAKEN BUT THERE SHOULD BE DATA
THERE TO KIND OF REPORT ON
PATIENT OUTCOMES.
>> I HAVE A PAPER I NEED TO GET
OUT ON A SURGICAL PROCEDURE BUT
THERE'S EVIDENCE, IF YOU WANT TO
LOWER YOUR CELLULITIS RISK, I'VE
READ THREE TO FIVE STUDIES THAT
SHOW RISK GOES FROM 25% DOWN TO
ZERO, SO THERE'S DATA.
>> I'VE BEEN ASKED TO SAY MINE
IS THE LAST COMMENT BUT I'M
GOING TO TAKE IT.
I DID WANT TO COMMENT.
THIS IS JUST MAYBE FOR INTEREST
BUT IN MY CLINICAL TRIAL WORK
AND MY CLINICAL TRANSLATIONAL
WORK THERE'S A DIFFERENT PROBLEM
I PERCEIVE IN LYMPHEDEMA
PATIENTS THAN AS A CARDIOLOGIST,
FOR EXAMPLE.
THAT IS EFFECT OF RESIDUAL
DISEASE BURDEN.
YOU REDUCE YOUR OBJECTIVE
MEASURE BY 20% AND PATIENT IS
COLORED BY 80% YOU HAVE NOT
RESOLVED.
MEASURES OF SUCCESS, IS THAT A
SUCCESS OR NOT A SUCCESS?
AND THE OTHER PROBLEM IS SUBSETS
OF THESE PATIENTS WHERE THEY
DEVELOP LYMPHATIC DISEASE AS AN
AFTER EFFECT OF ANOTHER PRIMARY
DISEASE LIKE CANCER THE
OVERHANGING EFFECT COLORS THE
SUCCESS OF THE INTERVENTION.
WE HAVE TO BE SENSITIVE TO ALL
THESE THINGS AND AS YOU SAY IT'S
A HETEROGENEOUS DISEASE
POPULATION AND HETEROGENEOUS SET
OF METRICS WE NEED TO USE TO
DECIDE WHAT WE'RE DOING FOR
PEOPLE.
>> THANK YOU.
I HATE BEING THE BAD GUY AND
CALLING THESE DISCUSSIONS TO A
CLOSE.
I HOPE THAT WAS HELPFUL TO HEAR
WHAT OTHER COMMITTEES HAVE BEEN
WORKING ON BUT HAVE A CHANCE TO
OFFER YOUR BUILDS AND FEEDBACK
TO TAKE IDEAS AND SEEING
CONNECTIONS.
THERE'S A REASON WE'VE BEEN
PUSHING SO MUCH ON UNDERSTANDING
WHAT THE CONNECTION POINTS ARE
BECAUSE AS YOU LOOK THROUGH THE
NEXT FEW WEEKS AND MONTHS OF
YOUR WORK WE DO EXPECT
COLLABORATION ACROSS THE GROUPS.
AS WE MOVE FORWARD PLEASE THINK
ABOUT WHAT YOU HEARD TODAY AND
WHAT OTHER GROUPS YOU NEED TO
MEET WITH TO FURTHER YOUR WORK.
I DO WANT TO TALK ABOUT
CONNECTIONS, FORGIVE ME, THEY
ARE JAM-PACKED ON POST-IT NOTE.
I'LL SEE HOW IT GOES.
IN MANY OF THE COMMITTEES I
HEARD WE'RE A SMALL COMMITTEE
BUT.
RIGHT?
A THEME OF SMALL COMMITTEES, BIG
MIGHTY DREAMS.
I WANT TO ENCOURAGE THIS GROUP
NOT TO LIMIT YOURSELF TO JUST
THE PEOPLE ON THIS CALL AND IN
THIS ROOM.
WE HAVE METHODS LIKE THE RFI BUT
SO MANY MORE TO ENGAGE PEOPLE
FROM THE OUTSIDE WORLD TO HELP
US PURSUE OUR GOAL.
PLEASE THINK ABOUT WHO ARE THOSE
PEOPLE, RIGHT?
DO WE WANT TO BRING THEM IN JUST
TO TALK TO YOUR COMMITTEE OR TO
THE ENTIRE COMMISSION, WHERE ARE
THOSE OPPORTUNITIES FOR
LEARNING?
BRINGING IT BACK TO US IF YOU
HEARD A GROUP TALKING ABOUT A
CHALLENGE YOU'RE UNIQUELY
POSITIONED TO HELP WITH, REACH
OUT TO THAT COMMITTEE AND OFFER
YOUR SUPPORT, WHETHER YOUR
KNOWLEDGE, YOUR EXPERIENCE, YOUR
CONTACTS, AND LET'S HELP EACH
OTHER BE SUCCESSFUL.
ALL RIGHT.
WE HEARD A LOT OF TIMES.
FUNDING CAME UP IN MANY GROUPS.
I DO WANT TO REITERATE PLEASE BE
THINKING OF COMMITTEES.
IF YOU HAVE THE APPROPRIATE
FUNDING WHAT WOULD BE POSSIBLE?
LET'S START MAKING LISTS OF WHAT
THAT VISION LOOKS LIKE AND BRING
IT TO LIFE.
IF THERE IS SOME SORT OF
PERMANENT ENTITY PLEASE THINK IN
YOUR COMMITTEES WHAT WOULD BE
REQUIRED FOR THAT, FROM THAT
ENTITY TO HELP YOUR VISION BE
SUCCESSFUL.
WE CAN CHOOSE TO RECOMMEND THIS
ENTITY IS FOCUSED ON SCIENCE AND
RESEARCH OR HAS BROADER
AGREEMENT BUT RELATED TO THAT
WHAT ARE THE MEASURABLE RESULTS
THAT WILL HOLD THEM ACCOUNTABLE.
>> WE HEARD ABOUT AWARENESS AND
MARKETING.
SO, WHAT DOES THAT LOOK LIKE FOR
YOUR GROUP, RIGHT?
WHAT DOES HIGHER LEVEL OF
AWARENESS UNLOCK AS YOU THINK
ABOUT WHAT'S POSSIBLE FOR THIS
SPACE AND DO THINK AT THE
BROADEST AUDIENCE LEVEL.
WE HEARD NEED FOR AWARENESS IN
MARKETING WITH PATIENTS,
CAREGIVERS, ALSO ACADEMIA,
INDUSTRY, SCIENTISTS, WE CAN ALL
THINK ABOUT WHAT'S POSSIBLE
THERE.
OKAY.
WE HEARD A RECOGNITION OF HOW
DIVERSE THE LD-RELATED SPACE IS.
AND THERE ARE CHALLENGES AND
OPPORTUNITIES EMBEDDED.
HERE WE WANT TO THINK ABOUT IF
WE WERE ABLE TO REACH THE
BROADEST SCOPE OF THIS COMMUNITY
WHAT WOULD THAT ENTAIL AND WHAT
WOULD THAT UNLOCK FOR US?
PLEASE BE THINKING ABOUT THAT
TOO AS YOU MOVE FORWARD.
NON-TRADITIONAL OUTREACH, GREAT
STORIES ABOUT BARBERSHOPS,
AMAZON, FAITH-BASED COMMUNITIES.
GOOD IDEA TO THINK ABOUT HOW TO
WE THINK ABOUT OUTSIDE THE BOX
AND TRADITIONAL ROUTES.
SEQUENCING BECOMES IMPORTANT.
THERE WAS A MOMENT WHERE WE WERE
TALKING ABOUT WHAT DOES HAVING A
RESEARCH ROADMAP UNLOCK FOR US.
IF YOU'RE THINKING ABOUT
ULTIMATELY WE WANT TO DO THIS
BUT THIS WOULD HAVE TO BE IN
PLACE FIRST, WILL THAT CONFORM
OUR RECOMMENDATIONS?
WE'LL BE ABLE TO DO THAT IF WE
THINK ACROSS COMMITTEES AND WHAT
NEEDS TO BE IN PLACES TO HELP US
BE SUCCESSFUL.
LASTLY, MEASUREMENT,
MEASUREMENT, MEASUREMENT.
WE HEARD FROM THE MEASURABLE
RESULTS COMMITTEE, THERE WAS A
JIMINY CRICKET APPEARANCE.
I'M SURE THAT HAPPENED IN THIS
MEETING.
SO, YOU DON'T HAVE TO WAIT FOR
THE MEASURABLE RESULTS COMMITTEE
TO REACH OUT.
IF
IF YOU AS A COMMITTEE ARE
THINKING ABOUT RESULTS THAT WILL
GO INTO YOUR RECOMMENDATION AND
FIND YOURSELF STUMPED, NOT
THINKING BROAD ENOUGH, I'M SURE
THE MEASURABLE RESULTS COMMITTEE
WOULD APPRECIATE A PHONE CALL
AND WE CAN BE PART OF THAT
CONSULTIVE APPROACH AND HELP YOU
BRAINSTORM AND THINK ABOUT HOW
WOULD THAT ACTUALLY WORK.
ANY BUILDS FROM MY ESTEEMED
COLLEAGUE?
>> YOU DID A GREAT JOB.
>> MELANIE?
>> I THINK THAT HIT ALL THE HIGH
POINTS.
>> I THANK MELANIE FOR OUR
INCREDIBLE NOTES AND
CONSULTATION ON OUR BREAK.
I THANK OUR PRESENTERS FOR
REPRESENTING THEIR GROUPS AND
THANK ALL OF YOU FOR THE WORK
THAT WENT INTO THE
PRESENTATIONS.
THANK YOU SO MUCH.
I'LL HAND IT OVER.
>> THANK YOU.
THIS WAS THOUGHT PROVOKING, A
LOT OF GREAT DISCUSSION.
NOW WE'LL LOOK BACK TO THE
PREVIOUS COMMISSION AND OPEN FOR
DECISION OF HISTORICAL
PERSPECTIVE OF NATIONAL
COMMISSION ON SLEEP DISORDERS
RESEARCH AND ESTABLISHMENT OF
NATIONAL CENTER ON SLEEP
DISORDERS RESEARCH.
WE INVITED DR. JAMES KILEY,
DIRECTOR OF THE DIVISION OF LUNG
DISEASES, NHLBI.
AND DR. MARISHKA BROWN JOINING
US ON ZOOM.
SHE IS DIRECTOR OF THE NATIONAL
CENTER ON SLEEP DISORDERS
RESEARCH, DIVISION OF LUNG
DISEASE AND NHLBI.
DR. KILEY?
>> THANK YOU.
>> THUNDERSTORM WARNING R.
>> THANK YOU.
IT'S WONDERFUL TO BE HERE AND
SEE THE FRUITS OF THE EFFORTS
THAT STARTED THIS THING.
WE WERE PART OF THE GROUP THAT
WORKED WITH OUR COUNCIL TO
ESTABLISH THE COMMISSION, IT'S
GREAT TO SEE YOU, STAN AND
OTHERS.
IT'S DEJA VU SOME POINTS KICKED
AROUND 30+ YEARS AGO WHEN THE
SLEEP COMMISSION GOT STARTED.
I THOUGHT, MY GOODNESS, YOU'RE
GOING TO RATTLE BRAIN CELLS
HERE, COMING BACK LITERALLY 30
YEARS WHEN THE SLEEP COMMISSION
WAS ESTABLISHED AND FRUITS OF
OUTPUT.
YOU'VE RECEIVED A COUPLE
DOCUMENTS, THANKS FOR
DISTRIBUTING THOSE.
IF YOU HAD A CHANCE TO SKIM
THROUGH YOU GOT A GENERAL FEEL
FOR HOW THINGS EVOLVED IN THE
EARLY '80s.
AND HOW THE COMMISSION WAS
INCREDIBLY INFLUENTIAL IN WHAT
SUBSEQUENTLY OCCURRED AT THE
COMPLETION OF ITS WORK.
LET ME GO BACK A LITTLE BIT AND
HIT BOTTOM LINE.
I'M HERE WITHOUT SLIDES AND
THAT'S DANGEROUS FOR LETTING
SCIENTISTS COME TO A PODIUM
WITHOUT SLIDES, THIS COULD GO ON
AND ON AND ON.
BUT THAT'S NOT EXACTLY THE POINT
HERE.
THE POINT IS THAT THERE ARE A
FEW THINGS THAT OCCURRED, AND IT
WAS I THINK REALLY VERY
PRO-ACTIVE SCIENTIFIC COMMUNITY
THAT WAS ABLE TO REACH SOME VERY
INFLUENTIAL MEMBERS OF CONGRESS.
SO A LOT OF THE STARS, IF YOU
WANT TO CALL IT THAT, LINED UP.
WHAT EVOLVED FROM THAT WAS THE
CONGRESSIONAL DIRECTIVE.
IT WAS IN THE PUBLIC LAW,
REFERRING TO SOME DOCUMENTATION
THAT ESTABLISHED THE COMMISSION,
INGRAINED INTO PUBLIC HEALTH LAW
THIS COMMISSION SHOULD EXIST,
SHOULD BE ESTABLISHED.
SO, THAT GOT THE WHOLE THING
GOING.
THERE WERE TIMES I THINK THAT
PRECEDED THAT IN TERMS OF HOW TO
BEST KIND OF CAPTURE THE NEED TO
GET MORE INFORMATION AROUND
SLEEP, SLEEP DISORDERS, AND THE
IMPACT OF SLEEP, NOT ONLY ON
HEALTH BUT ON OVERALL
PRODUCTIVITY OF AMERICAN
SOCIETY, AND SO THERE WERE A LOT
OF PIECES THAT WENT INTO THIS.
I'M GOING TO REALLY FAST FORWARD
HERE BECAUSE I'M GOING TO JUST
SHOW YOU TWO VOLUMES THAT WERE
PRODUCED FROM THE COMMISSION
REPORT.
THESE YOU CAN I THINK FIND
ONLINE SOMEWHERE.
I WAS IN MY OFFICE THIS MORNING
LOOKING THROUGH THEM AND THE
PAGES ARE STARTING TO TURN
YELLOW.
THESE MAY THE LAST REMNANTS OF
WHAT EXISTS IN WRITING.
YOU HAVE A BIG TASK AHEAD OF YOU
TO PRODUCE SOMETHING OF THIS
MAGNITUDE BECAUSE ONE OF THE
THINGS IN THIS 2,000-PAGE VOLUME
2 OF WAKEUP AMERICAN, A NATIONAL
SLEEP ALERT, THIS IS ONE OF THE
REPORTS THAT CAME OUT OF THE
COMMISSION.
AND THERE ARE MULTIPLE CHAPTERS
IN HERE THAT REALLY GO AFTER IN
VERY, VERY DEEP SPECIFIC
DETAILS, THE MAGNITUDE OF THE
PROBLEM, THE STATE OF AFFAIRS,
KNOWLEDGE BASE BOTH
SCIENTIFICALLY AS WELL AS IN
SOME CASES ANECDOTALLY WITH WHAT
WAS KNOWN AT THAT TIME AROUND
SLEEP, SLEEP HEALTH, IT WASN'T
JUST MEDICINE, WASN'T JUST
HEALTH.
IT WAS SOCIETAL IMPACT OF
POTENTIAL SLEEP DISRUPTION,
SLEEP ABNORMALITIES, SLEEP
RELATED TO PRODUCTIVITY, RELATED
TO ACCIDENTS, WHETHER TRAFFIC
ACCIDENTS, DROWSY DRIVING,
FALLING ASLEEP AT THE WHEEL,
EXXON VALDEEZ, CHALLENGER
ACCIDENT, ALL OF THESE, WHEN YOU
LOOK BACK AT NTSB REPORTS ALL
HAD A HUMAN ELEMENT TO THEM.
THAT HUMAN ELEMENT OFTENTIMES
POINTED TO FATIGUE OR LACK OF
SLEEP OR SLEEP DEPRIVATION.
THIS WAS GIGANTIC IN SCOPE.
WHAT THE COMMISSION DID AFTER
RECEIVING ALL THESE REPORTS FROM
MEMBERS OF THE COMMISSION
BASICALLY BOIL DOWN INTO WHAT IS
REALLY VOLUME ONE, THE EXECUTIVE
SUMMARY OF THE SLEEP COMMISSION,
AND THAT WAS -- I THINK IS THE
SEMINAL DOCUMENT THAT REALLY WAS
WHAT LED TO THE OUTCOME THAT WE
HAVE SEEN TO DATE.
GOING BACK IN TIME THE
COMMISSION WAS APPOINTED BY THE
CONGRESS.
THERE WAS A BYPASS FROM ANYTHING
GOING IN THE GOVERNMENT.
IT DIDN'T REALLY MATTER WHAT
AGENCY WAS DOING ANYTHING,
WHETHER AN AGENCY WAS INTERESTED
IN THIS OR NOT.
IT WAS THE CONGRESS THAT DROVE
IT FULLY AND COMPLETELY.
SO THE CONGRESS IN SETTING UP
THE COMMISSION WAS VERY
DETAILED, IN WHAT IT WANTED, AND
AGAIN DRIVEN BY THE STATE OF
KNOWLEDGE, SOME VERY INFLUENTIAL
HIGHLY RESPECTED MEMBERS OF THE
SLEEP COMMUNITY, AND THE PUBLIC.
MEMBERS OF THE PUBLIC, WHETHER
THEY HAD A SLEEP DISORDER,
WHETHER IMPACTED, WHETHER THEY
HAD A FAMILY MEMBER IMPACTED, BY
SOMETHING RELATED TO SLEEP.
SO, IT WAS A NICELY ORGANIZED
GROUP THAT REACHED THE HIGH
LEVEL POLICYMAKERS, AND THEY
DROVE WHAT IS THE -- WHAT WAS
THE CHARGE OF THE COMMISSION.
I WON'T GO INTO ALL OF THAT,
JUST TO LEAVE YOU WITH THE FACT
THAT THERE WERE THREE BASIC
COMPONENTS THAT THEY WANTED DONE
IN CONGRESS, THAT IS.
LOOK AT THE WHOLE STATE OF
KNOWLEDGE ON INCIDENCE,
PREVALENCE, MORBIDITY, MORTALITY
RESULTING FROM SLEEP DISORDERS
AND SOCIAL AND ECONOMIC IMPACT
OF THOSE DISORDERS.
A HUGE CHUNK RIGHT THERE.
EVALUATE THE PUBLIC/PRIVATE
FACILITIES AND RESOURCES,
PERSONNEL, RESEARCH ACTIVITIES,
LOOKING AT THE DISORDERS
THEMSELVES, AND THEN FINALLY
IDENTIFY PROGRAMS THAT WOULD
LEAD TO IMPROVEMENT IN THE
MANAGEMENT AND RESEARCH INTO
SLEEP DISORDERS AND SLEEP
DEPRIVATION AND WHAT COULD BE
ACCOMPLISHED.
THE COMMISSION THEN OVER AN
18-MONTH PERIOD, IT STARTED IN
MARCH I THINK OF 1990, AGAIN GO
UPSTREAM A COUPLE YEARS THAT'S
WHEN THINGS SORT OF EVOLVED IN
TERMS OF GETTING THE COMMISSION
OFF THE GROUND, IT HAD ITS FIRST
MEETING IN 1990, MET FOR 18
MONTHS, PRODUCED THESE REPORTS,
IN SOME WAYS IT WAS A VERY
MASSIVE EFFORT.
THEY APPOINTED TEN MEMBERS OF
THE COMMISSION WITH A NUMBER OF
EX OFFICIO MEMBERS, REACHED OUT
TO NIH, TO HELP WITH THE
LOGISTICS AND COORDINATION OF
THE EFFORT, LUCKILY THE NATIONAL
INSTITUTE ON AGING STEPPED
FORWARD AND TOOK ON THE ROLE OF
EXECUTIVE SECRETARY, IF YOU
WILL, OR THE ENTITY THAT WOULD
COORDINATE THE EFFORT OF THE
COMMISSION.
AT THE END THE COMMISSION MADE
SIX RECOMMENDATIONS, SO I'M FAST
FORWARDING HERE, FIRST TO
ESTABLISH A NATIONAL CENTER, AND
AGAIN YOU CAN LOOK AT THE FINE
POINTS, BUT THEY FELT THAT THE
COMMISSION REALLY IN DOING ITS
JOB, LOOKING OVER ALL OF THE
FACTS AND DETAILS AND
INFORMATION COLLECTED, THERE WAS
NO ONE SINGLE ENTITY THAT COULD
COORDINATE THE EFFORTS, NOT ONLY
IN REGARDS TO MEDICAL HEALTH
RESEARCH BUT ALSO THE BIGGER
PICTURE ACROSS THE SOCIETAL ROLE
THAT SLEEP CENTER COULD PLAY.
AND IN SO DOING, IT NOT ONLY
INVOLVED HEALTH-RELATED
AGENCIES, DEPARTMENTS OF HEALTH
AND HUMAN SERVICES, BUT ALL
GOVERNMENT AGENCIES.
SO THE COMMISSION RECOMMENDED
THE CONGRESS GO TO THE SECRETARY
OF HEALTH AND HUMAN SERVICES AND
HAVE THAT INDIVIDUAL, THE
SECRETARY, PRODUCE AN EDICT TO
THOSE AGENCIES THAT FELL WITHIN
DHHS TO THEN IMPLEMENT ASPECTS
OF THE COMMISSION, AND WHAT FELL
TO NIH WAS THE FIRST ELEMENT
WHICH WAS TO FIGURE OUT WHETHER
THERE WAS AN ENTITY WITHIN NIH
THAT COULD TAKE ON THIS ROLE OF
HOUSING THE NATIONAL CENTER ON
SLEEP DISORDERS RESEARCH.
THERE WERE A NUMBER OF OTHER
RECOMMENDATIONS, MOSTLY AROUND
STRENGTHENING ONGOING PROGRAMS,
NOT JUST AT NIH AND DHHS BUT
ACROSS THE GOVERNMENT,
DEPARTMENT OF DEFENSE, VETERANS
AFFAIRS, ET CETERA.
THE THIRD WAS ACCOUNTABILITY.
THERE WAS SOME DESIRE FOR THE
CONGRESS TO WANT TO KNOW THAT
WITH ALL THIS IN PLACE THAT THE
AGENCIES OF THE GOVERNMENT WERE
ACCOUNTABLE TO THE CONGRESS IN
TERMS OF OUTPUT AND WHAT DID WE
DO WITH THAT INFORMATION, HOW
DID WE IMPLEMENT IT, HOW DID WE
THEN TAKE IT TO IMPROVE HEALTH
AND TO ALSO IMPROVE THE SOCIETAL
ISSUES.
EACH RECOMMENDATION CARRIED A
PRICE TAG, NOT ONLY DID THE
COMMISSION SAY THIS IS WHAT WE
FOUND, THIS IS WHAT'S IMPORTANT,
HERE IS WHAT WE FOUND WHEN WE
DID THE COST OF ANALYSIS TO
IMPLEMENT THESE INDIVIDUAL
RECOMMENDATIONS, THE OTHER TWO
ARE CRITICAL IN THAT THEY BOTH
DEALT WITH EDUCATION.
FIRST DEALT WITH EDUCATION OF
HEALTH CARE PROFESSIONALS, I
HEARD SOMEBODY SAY THEY PICKED
UP A BOOK AND NOT A SINGLE WORD
ON LYMPHATICS.
WELL, BACK IN 1980 YOU COULD
HAVE SAID THE SAME THING ABOUT
SLEEP AND SLEEP DISORDERS, NOT
MUCH TEACHING IN MEDICAL
SCHOOLS, NOT MUCH IN THE WAY OF
EDUCATING THOSE WHO SHOULD BE
AWARE OF KNOWLEDGE OF DISORDERS.
AND THEN HEALTH EDUCATION WAS
BIG.
FINAL WAS EDUCATE AMERICA.
GET PEOPLE TO UNDERSTAND WHAT IT
IS THAT WE'RE TALKING ABOUT AND
HOW THINGS COULD BE PREVENTED,
HOW THINGS COULD BE IMPROVED IN
YOUR OVERALL LIFE IF YOU WERE
JUST TO SOME OF THE
RECOMMENDATIONS THE COMMISSION
OUTLINED.
ALL OF THIS CAME ABOUT, CAME
WITH PRICE TAGS.
I'LL WRAP UP, THE COMMISSION
PART, TO LEAVE TIME FOR MARISHKA
TO TELL YOU HOW THE NIH TOOK ON
THE COMMISSION RECOMMENDATIONS
IN A VERY COMPREHENSIVE WAY BUT
IN CLOSING I WILL JUST SAY THAT
THIS COMMISSION DID A HEROIC
AMOUNT OF WORK NOT BECAUSE I WAS
PART OF IT, THAT HAS NOTHING TO
DO WITH IT FRANKLY.
IT WAS A MASSIVE EFFORT BECAUSE
THEY WENT ACROSS THE COUNTRY AND
THEY HELD PUBLIC MEETINGS,
WORKSHOPS, EIGHT REGIONAL
MEETINGS THAT WERE ATTENDED BY
LOTS OF PEOPLE SO IT WAS A
GROUNDSWELL WHERE THIS WAS
AFFECTING A LOT OF PEOPLE.
CONGRESS REACTS, AS YOU KNOW,
THE THE MORE VOICES YOU HEAR,
THE MORE YOU WANT TO DIG IN AND
SEE WHAT'S GOING ON HERE AND
WHETHER THERE'S A NEED TO ACT.
I THINK WHAT WAS REALLY
GRATIFYING IN MANY WAYS TO SEE
HOW THE PUBLIC RESPONDED, HOW
MEDICAL RESEARCH AND THE NIH
RESPONDED IN TERMS OF TAKING A
VERY AGGRESSIVE LEAD ROLE.
RECOMMENDATIONS FOR THE CENTER,
TWO YEARS BEFORE THE CREATION OF
THE SLEEP CENTER THE CONGRESS
ESTABLISHED A NATIONAL CENTER ON
REHABILITATION RESEARCH, ANOTHER
ACT OF CONGRESS DONE BY
INSERTING A CENTER WITHIN AN
INSTITUTE AT THE NIH.
WHAT THE COMMISSION DID IN THE
EARLY DAYS WAS DRIVE IT DOWN A
PATH THAT WANTED AN INSTITUTE.
SO THEY WERE VERY, VERY FORCEFUL
AND CONVINCED THAT THE WAY
FORWARD WAS TO HAVE A NATIONAL
INSTITUTE ON SLEEP AND SLEEP
RESEARCH.
I THINK OVER TIME THEY WERE
CONVINCED PERHAPS THERE WERE
OTHER WAYS TO DO IT THAT MIGHT
BE JUST AS EFFECTIVE, THE REHAB
CENTER WAS JUST GETTING ITS FEED
UNDER ITSELF, THE LEGISLATION
WAS ATTRACTIVE TO THE COMMISSION
AND TO OTHERS.
SO WHAT ENDED UP HAPPENING IS
RATHER THAN RECOMMENDING AN
INSTITUTE THEY RECOMMENDED THE
CENTER AND LEFT IT TO NIH,
TRICKLED TO THE DIRECTOR WHO PUT
OUT A CALL TO NIH INSTITUTES AND
SAID ANYBODY HERE THINK THEY CAN
ANNUAL THIS?
AT THE TIME, THE BIGGEST SLEEP
DISORDERS THAT EXISTED THAT WE
KNEW ABOUT, THERE WAS DATA, IT
WAS PRETTY ESTABLISHED, WAS
OBSTRUCTIVE SLEEP APNEA.
AND SO DR. HEALEY, THE DIRECTOR
OF THE INSTITUTES, I CAN RELIFE
LIKE IT WAS YESTERDAY, CALLED
THE INSTITUTE DIRECTOR AT NHLBI,
I WAS ALSO DRAGGED IN, TO TALK
ABOUT WHAT WE KNOW ABOUT THIS
DISEASE.
AND THE BOTTOM LINE WAS NHLBI,
WE THINK YOU'RE THE RIGHT
INSTITUTE FOR THIS.
I FELT NO OTHER INSTITUTE STOOD
UP BUT I THE OPPOSITE, EVERYBODY
STOOD UP AND WE WERE THE BEST.
BUT THAT WAS THE NIH DIRECTOR'S
DECISION AND OUR INSTITUTE
DIRECTOR TOOK THAT ON AND TOOK
ON ALL THE ELEMENTS OF WHAT
ENDED UP BEING THE PUBLIC LAW
THAT ESTABLISHED THE SLEEP
CENTER, AGAIN THROUGH CONGRESS.
SO THIS WAS AN ACT, IT'S IN OUR
STATUTE NOW.
THIS IS PART OF THE FABRIC OF
THE NIH.
IT EXISTS BECAUSE OF THE PUBLIC
LAW AND AS THE SLEEP COMMISSION
HAD, DISCRETE ELEMENTS OF IT
THAT IT WAS TO DO XYZ, TO HAVE
THIS STRUCTURE, TO DO THE
FOLLOWING.
SO THERE WAS NO AMBIGUITY ABOUT
WHAT WAS THE ROLE OF THE SLEEP
CENTER.
SO, I HOPE I'VE GIVEN YOU A
LITTLE BIT OF HISTORICAL
PERSPECTIVE WHAT PRECEDED THE
COMMISSION, HOW THE COMMISSION
GOT ITS START, WHAT HAPPENED
DURING THAT 18-MONTH PERIOD OF
COLLECTING DATA AND MAKING THE
CASE, PRODUCING THE DOCUMENTS
THAT WERE CREDIBLE TO THOSE BACK
IN THE EARLY 90s IN TERMS OF
NEXT STEPS, AND PUTTING AN
ENTITY IN PLACE WITHIN THE NIH
THAT WAS DEALING WITH NOT ONLY
THE RESEARCH, EDUCATION,
COORDINATION, BUT ALSO
ACCOUNTABILITY.
AND I THINK, I HOPE, THAT YOU
WILL SEE AND MAYBE AGREE WITH US
THAT THIS HAS BEEN A VERY
SUCCESSFUL UNDERTAKING.
WE JUST CELEBRATED THE 25th
ANNIVERSARY OF THE SLEEP CENTER
IN 2019.
AND I PROVIDED YOU WITH AN
EDITORIAL THAT I WROTE WITH THE
PREVIOUS DIRECTOR OF THE SLEEP
CENTER AS WELL AS OUR CURRENT
DIRECTOR, DR. GIBBONS, ON
PROGRESS THAT WE HAVE MADE OVER
THAT 25 YEARS AND THE PROSPECTS
FOR WHAT'S TO COME AS WE STAY ON
THE TRAJECTORY THAT GOT STARTED
SEVERAL DECADES AGO.
I'LL STOP HERE AND I'M GOING TO
GIVE THE PODIUM TO MARISHKA
BROWN AND SHE WILL THEN -- SHE'S
THE CURRENT DIRECTOR OF THE
NATIONAL CENTER ON SLEEP
DISORDERS RESEARCH AT NHLBI, AND
I THINK WILL TELL YOU THE TALE
HOW THE CENTER IS FUNCTIONING
NOW AND SOME THINGS THEY ARE
WORKING ON, HOW THEY ARE REALLY
VERY MUCH MEETING THE INTENT OF
THE LEGISLATION AND GOALS AND WE
CAN BE VERY PROUD OF THE FACT
THAT WE'VE IMPROVED THE HEALTH
OF THIS COUNTRY WHEN IT COMES TO
SLEEP DEPRIVATION, DISORDERS AND
ABNORMALITIES, SO MUCH MORE
ADVANCED THAN MY WILDEST DREAMS
35 YEARS AGO.
GREAT TO HAVE A CHANCE TO TALK
AND I HOPE YOU ENJOY THE
PROGRESS FROM THE SLEEP CENTER.
NOW, ONE MORE THING BEFORE I
LEAVE.
ONE OF THE REMNANTS, I CAN'T
COME TO A MEETING WITH NO SLIDES
AND NOTHING, RIGHT?
ONE OF THE REMNANTS THAT WE
UNDERTOOK WHEN I WAS DIRECTOR OF
THE SLEEP CENTER WAS PUBLIC
HEALTH AWARENESS CAMPAIGN.
I WAS IN INDIANA FOR A MEETING
AS DIRECTOR OF THE CENTER, AND I
WAS APPROACHED BY JIM HENSON,
WHO AS YOU KNOW IS THE ARTIST
WHO CREATED GARFIELD THE CAT.
WE HAD A MAYBE IMPROMPTU
TWO-HOUR CONVERSATION, SITTING
IN A BACK ROOM AT A CONFERENCE
CENTER, AND HE WAS SO EXCITED
ABOUT THE POSSIBILITY THAT WE
CREATED A PARTNERSHIP WHEN
NHLBI, THE SLEEP CENTER, AND HIS
COMPANY TO MAKE GARFIELD THE
OFFICIAL SPOKESPERSON WHO THE,
AS YOU KNOW, WHO SLEEPS A LOT,
RIGHT?
GARFIELD BECAME THE STAR SLEEPER
AND WE HAD A HUGE AMOUNT OF
PUBLICITY AND ACTIVITY, NOT ONLY
ALL THE, YOU KNOW, KIND OF
THINGS YOU DO BUT JIM WAS SUCH A
WONDERFUL PERSON TO WORK WITH.
HAD HE REGULAR SUNDAY IN THE
"TIMES," "NEW YORK TIMES," HIS
CARTOON WOULD PORTRAY GARFIELD
CHARACTERIZED AROUND THE GOALS
OF THE CENTER, FOR TWO OR THREE
YEARS OR SO WITH REPEATED THINGS
TO GET AWARENESS OF THE PUBLIC
AND TRY TO TARGET THE PART OF
THE PUBLIC THAT LOOKS AT THESE
COMICS AND REALLY BELIEVES THAT
THERE ARE THINGS THAT TELL A
STORY AND YOU CAN LEARN A LOT
FROM THEM.
HE DID A WONDERFUL JOB.
THIS IS THE LAST OF MY MOMENTUMS
FROM THE SLEEP CENTER, I'LL PASS
IT AROUND.
YOU CAN SEE IT.
THERE WERE TONS OF THESE THINGS,
ALL KINDS OF THINGS, LENORA'S
GROUP, THE PREVIOUS ITERATION OF
THIS WAS VERY INSTRUMENTAL IN
MAKING IT WORK BECAUSE THEY WERE
THE ONES THAT DROVE THE
EDUCATIONAL COMPONENT OF THE
CENTER AS THEY DO NOW BUT THIS
WAS SUCH A FUN PROJECT, AN
EFFORT THAT EVERYBODY BONDED
WITH AND HAD A LOT OF FUN.
AT THE END WE WERE ABLE TO
MEASURE DID WE GET AWARENESS UP.
CLEARLY WE NAUGHT IN PLACE WHEN
WE STARTED, IT WAS VERY UNIQUE
TO SEE HOW MANY MORE PEOPLE KNEW
SOMETHING ABOUT SLEEP AS A
RESULT OF THE GARFIELD
EDUCATIONAL PROBLEM.
>> WE NEED A GARFIELD FOR THIS.
>> DR. BROWN, THE FLOOR IS
YOURS.
>> THANKS TO JIM FOR THAT
PERSPECTIVE, BEING THERE AND
BEING ON THE GROUND, TO PRESENT
WHAT WAS HAPPENING AT THE TIME.
MY JOB IS TO GIVE AN UPDATE AS
CURRENT DIRECTOR WHERE WE ARE
AND MORE DETAIL OF WHO WE ARE
AND WHAT WE DO.
I LIKE COLOR AND ANIMATION.
THERE ARE A LOT OF THEM.
CLICK THROUGH BECAUSE I DID NOT
REALIZE I WAS NOT DRIVING
SLIDES.
NCSDR, ONE MORE CLICK,
CONGRESSIONALLY MANDATED.
OUR MISSION IS REALLY
THREE-FOLD.
WE CAN BEND IT INTO THREE
CATEGORIES.
WE SUPPORT RESEARCH AND
TRAINING, COORDINATE ACTIVITIES
OF THE CENTER NOT ONLY ACROSS
NIH BUT THE FEDERAL GOVERNMENT.
WE ALSO HAVE AN EDUCATION OF THE
PUBLIC AND RESEARCH COMMUNITIES
COMPONENT, JIM GAVE A CLEAR
EXAMPLE WITH THE GARFIELD STAR
SLEEPER CAMPAIGN.
THE LAW MANDATES THAT WE DEVELOP
A COMPREHENSIVE RESEARCH PLAN SO
WE ARE THINKING THROUGH
PRIORITIES AND WHAT NEEDS TO BE
DONE AS FAR AS ACTIVITIES OF THE
CENTER, ONE OF THE THINGS WE DO.
SO TO DO THIS, TO ACCOMPLISH OUR
MISSION, THE CENTER HAS A FACA
COMMITTEE, SLEEP DISORDERS
RESEARCH ADVISORY BOARD WHICH
ADVISES AND ASSISTS AND CONSULTS
AND MAKES RECOMMENDATIONS ON
SIGN ACTIVE ACTIVITIES, RESEARCH
DIRECTION AND PRIORITIES TO BE
CARRIED OUT BY AND THROUGH THE
NCSDR.
NEXT SLIDE PLEASE.
AND SO YOU CAN DO ANOTHER CLICK.
THE SLEEP DISORDERS RESEARCH
ADVISORY BOARD MEETINGS ARE THE
PREMIER VENUE WHERE THE
COMMUNITY INCLUDING RESEARCHERS,
PROFESSIONALS, STAKEHOLDERS AND
GOVERNMENT AGENCIES CAN COME AND
EXCHANGE VIEWS ON WHAT NEEDS TO
BE DONE.
SO THE NIH UTILIZED FOUR TYPES
OF ADVISORY COMMITTEES.
SO THE SLEEP DISORDERS RESEARCH
ADVISORY BOARD IS THIS PROGRAM
ADVISORY COMMITTEE.
I PUT A SNIPPET OF THE CHARTER
ON THE SIDE, UPDATED EVERY TWO
YEARS TO MAKE SURE WE'RE MEETING
OUR MANDATE.
CLICK THROUGH.
AGAIN.
I LOVE COLOR AND ANIMATIONS.
RIGHT THERE.
NCSDR COORDINATES WITH NIH,
SOMETHING CALLED THE SLEEP
DISORDERS RESEARCH COORDINATING
COMMITTEE, IN EXISTENCE SINCE
THE CENTER WAS IN EXISTENCE,
MID-'80s.
AND THIS COMMITTEE IS COMPRISED
OF PROGRAM OFFICIALS ACROSS THE
NIH THAT SLEEP AND CIRCADIAN
BIOLOGY RESEARCH IN THEIR
PORTFOLIOS.
WE HAVE OTHER AGENCIES ACROSS
THE FEDERAL GOVERNMENT INCLUDING
DEPARTMENT OF DEFENSE,
DEPARTMENT OF TRANSPORTATION,
DEPARTMENT MUCH HOUSING AND
URBAN DEVELOPMENT, DEPARTMENT OF
ENERGY, SEVERAL OTHERS WE
COORDINATE WITH.
THIS INFORMATION AGAIN WE TALK
ABOUT SLEEP DISORDERS RESEARCH
ADVISORY BOARD, WE MEET THREE
TIMES A YEAR.
THE FIRST THURSDAY AND FRIDAY IN
APRIL.
WE JUST HAD A MEETING EARLIER
THIS MONTH, WE MEET FIRST
THURSDAY IN AUGUST AND FIRST
THURSDAY IN DECEMBER.
THIS INFORMATION FROM ALL OF
THESE STAKEHOLDERS AND
DISCUSSIONS IS RECORDED IN THIS
PLAN, A SIGNPOST FOR THE
COMMUNITY AND NIH ABOUT THE
DIRECTIONS TO BE CONSIDERED.
NEXT SLIDE PLEASE.
SO ALTHOUGH THE NCSDR IS A
COORDINATION HUB, THIS RESEARCH
IS SUPPORTED ACROSS NIH.
AND TO GIVE A PICTURE OF THE
LANDSCAPE, CURRENTLY THERE ARE
21 INSTITUTES, CENTERS AND
AUDIENCES FUNDING RESEARCH,
FUNDING IN THESE AREAS HAS
INCREASED OVER THE YEARS IN
HEALTH OF WOMEN, MA TENTER
HEALTH, MINORITY HEALTH AND
HEALTH DISPARITIES, SUBSTANCE
ABUSE, PAIN RESEARCH, AGING AND
IMMUNE RESEARCH.
SLEEP AND CIRCADIAN BIOLOGY ARE
CONNECTED TO ALL OF THESE.
THIS IS THE NEXUS, WE'RE LOCATED
IN NHLBI THERE ARE RESEARCH
AREAS WE SUPPORT WITHIN HEART,
LUNG AND BLOOD MISSION.
WE SUPPORT RESEARCH PROJECTS
RELATED TO REGULATION OF SLEEP
AND SLEEP DISORDERS, ETIOLOGY
AND TREATMENT OF HEART, LUNG AND
BLOOD DISEASES.
WE SUPPORT RESEARCH IN
DIAGNOSIS, TREATMENT, PREVENTION
OF SLEEP DISORDERED BREATHING,
SLEEP APNEA WAS ONE OF THE BIG
PULSE IN THE DEVELOPMENT OF THE
CENTER.
NHLBI IS THE LARGERS FUNDER.
WE HAVE A LARGE PORTFOLIO TO
DETERMINE HOW THE BRAIN CONTROLS
BREATHING DURING SLEEP.
NEXT SLIDE PLEASE.
AND SO THE NCSDR EXPERIENCED
GROWTH IN THE LAST SEVERAL
YEARS.
WHEN I JOINED EIGHT OR NINE
YEARS AGO THERE WAS ONLY FOUR
PEOPLE SO WHEN YOU'RE TALKING
ABOUT A SMALL GROUP, SMALL
DOESN'T MEAN YOU CAN'T BE
MIGHTY.
NCSDR IS THE ENGINE THAT COULD,
PULLING BIG THINGS FOR A LONG
TIME.
WE ESSENTIALLY DOUBLED STAFF
WHEN I BECAME DIRECTOR, MORE
THAN DOUBLED STAFF WHEN I BECAME
DIRECTOR IN 2020.
LATE 2020.
AND SO IN ADDITION TO THE GROWTH
THE REASON FOR GROWTH WAS
ESSENTIALLY BECAUSE SCIENCE WAS
EVOLVING.
WE HAVE DIFFERENT PROGRAMS, TWO
PROGRAMS ADDED SPECIFICALLY, ONE
IN PREVENTION AND SLEEP HEALTH
AND ONE IN CHRONOBIOLOGY.
WHEN TALKING ABOUT THE PLAN
THERE HAVE BEEN FOUR PLANS, MOST
RECENT PUBLISHED IN DISEASE
2021.
THESE COVERED SCIENCE OF THE
TIMES, THE PLANS ARE NOT MEANT
TO BE BLUEPRINTS BUT DYNAMIC
SPRINGBOARDS FOR EXCITING
SCIENCE TO COME.
ALL THE RECOMMENDATIONS, A LOT
FOCUSED ON TOOLS AND TECHNIQUES,
TO UNDERSTAND DAY TIME
SLEEPINESS, NEGATIVE IMPACT ON
SOCIETY, AND AS RESEARCH
PROGRESSED EXCITING AND
SCIENTIFIC FINDINGS
MATERIALIZED, PSOAS THE SCIENCE
EVOLVED THESE PLANS NEED TO BE
CRITICAL ASSESSMENT SSESSMENT
NEEDS TO BE MADE SO THE PLAN IS
NOT MEANT TO SIT ON THE SHELF
AND COLLECT DUST, VIRTUAL SHELF,
IT IS A IT IS A LIVING ALMOST
BREATHING THING.
I WANT TO HIGHLIGHT A A FEW,
COORDINATING WITH THE "HEAL"
PROGRAM, HELPING END ADDICTION
LONG TERM, OPIOID USE DISORDER.
STAFF HAVE LED SEVERAL
INITIATIVES TO INTEGRATE SLEEP
INTO THE PREVENTION AND
TREATMENT OF OPIOID USE
DISORDERS THAT APPLY TO NHLBI TO
DEVELOP NOVEL THERAPEUTICS FOR
OPIOID INDUCED RESPIRATORY
DEPRESSION.
WE TALK ABOUT COORDINATION.
AGAIN, NCSDR OR NHLBI DOESN'T
FUND ALL SLEEP AND CIRCADIAN
RESEARCH, THAT WAS THE POINT OF
THE SLIDE SHOWING ACROSS NIH BUT
WE HAVE HOW WE'RE ABLE TO
SUPPORT THE GROWTH LOOKING FOR
UNIQUE OPPORTUNITIES.
SO FOR THE "HEAL" PROGRAM WE
WERE ABLE TO TAKE OUR PORTFOLIO
AND THIS WAS WHERE WE CONTROL
AND SLEEP AND CORRECT TO OPIOID
USE DISORDER AND RESPIRATORY
DEPRESSION.
NEXT SLIDE PLEASE.
SO ANOTHER PROGRAM THAT WE'RE
WORKING WITH INCLUDE PROGRAM,
INVESTIGATION OF CO-OCCURRING
CONDITIONS ACROSS THE LIFESPAN
TO UNDERSTAND DOWN SYNDROME.
THIS PROGRAM IS RELATIVELY NEW,
DOWN SYNDROME -- PERSON LIVING
WITH DOWN SYNDROME, THAT
COMMUNITY ADVOCATED, LOBBIED
CONGRESS.
IN 2018 CONGRESS GAVE THEM A
SAID-ASIDE FOR FUNDING FOR
"INCLUDE," THAT HAS GROWN OVER
SEVERAL YEARS AND THE REASON
WE'RE INTERESTED IS BECAUSE THE
PREVALENCE OF SLEEP DISORDER
BREATHING OR APNEA AND PERSONS
LIVING WITH DOWN SYNDROME
ESTIMATED BETWEEN 54 TO 90%.
RIGHT NOW WE'RE SUPPORTING SIX
CLINICAL TRIALS THAT INCLUDE
PHARMACOTHERAPY, SOME
INTENTIONAL INTENSIVE BEHAVIORAL
INTERVENTIONS, GLOSS AL NERVE
STIMULATION AND DEVICES TO KEEP
THE AIRWAY OPEN.
NEXT SLIDE PLEASE.
ANOTHER PROGRAM STARTED
RECENTLY, IS SLEEP AND TYPE 1
DIABETES, THEY WERE REVIEWED
LAST MONTH.
WE HOPE TO GET THE PROGRAM
STARTED SOON.
THESE ARE EXAMPLES OF HOW YOU
CAN COORDINATE AND WORK ACROSS
DIFFERENT ENTITIES TO SUPPORT
YOUR SCIENTIFIC AREA.
NEXT SLIDE PLEASE.
PRIORITIES, ALL THESE ALIGN.
I TALKED ABOUT NIH-WIDE SLEEP
RESEARCH PLAN BUT THIS PLAN
ALIGNS WITH THE NHLBI STRATEGIC
VISION AS WELL AS NIH-WIDE
STRATEGIC PLAN AND WE'VE BEEN
WORKING AGAIN ACROSS NIH AS
WE'RE CURRENTLY IN THE MIDST OF
NHLBI STRATEGIC VISIONING
REFRESH TO ENSURE THAT THE
ACTIVITIES THAT THE CENTER ARE
DOING ARE ALIGNING AND GROWING
WITH THE SCIENCE NHLBI WILL
SUPPORT IN THE FUTURE.
WITH THAT I WILL END, AND I'M
HAPPY TO TAKE QUESTIONS.
WE HAVE A SESSION RIGHT AFTER
THIS BUT I WILL END.
THANK YOU VERY MUCH.
>> THANK YOU, DR. KILEY AND
BROWN.
LOTS OF GREAT INSIGHTS, FOR ME
PAGES OF NOTES BUT I COULD SEE
AROUND THE ROOM A LOT OF
QUESTIONS SPARKING.
I THINKS -- THINK WE'VE COME TO
THE END OF THE OPEN SESSION.
WE'RE GOING TO BREAK FOR LUNCH
AND RESUME AS QUICKLY AS
POSSIBLE.
ANYTHING TO ADD?
>> YES.
I WOULD LIKE TO THANK EVERYONE,
AND I WOULD LIKE TO CLOSE THE
OPEN SESSION WITH OUR GRATITUDE
TO EVERYONE WHO JOINED US TODAY
ON NIH VIDEOCAST.
THANK YOU FOR SENDING YOUR
FEEDBACK AND YOUR QUESTIONS.
THEY ARE ALL RECORDED.
AND WE WILL BE USING THEM AS A
PART OF THE DELIBERATIONS OF
THIS COMMISSION.
HUGE THANK YOU GOES TO ALL OF
YOU WHO PREPARED TODAY'S SLIDES,
AND MEETING CONTINUOUSLY.
THANK YOU FOR THAT.
IF YOU REALLY REACHED TO A NICE
POINT, WHERE YOU PAVED THE ROAD
FOR THE NEXT MEETINGS AND THE
COMMISSION.
THANK YOU TO OUR CO-CHAIRS.
THIS WAS WITH YOUR LEADERSHIP
WORKING OUT SO FAR, SO GREAT.
AND I ALSO WANT TO THANK THE
EXCELLENT SUPPORT PROVIDED BY
THE SUPPORT TEAM.
YOU'RE NOT SEEING THEM.
NUMEROUS PEOPLE WORKING TO
SUPPORT THIS COMMISSION
INCLUDING NHLBI LEADERSHIP, DR.
LENOREA JOHNSON IS SUPPORTING
US.
THANK YOU.
AND THE EXTRAMURAL PROGRAM AND
MY TRUSTED COLLEAGUE HERE, YOU
KNOW HOW MUCH SHE WORKS TO MAKE
US GO.
AND DR. GALLIN FOR HER
LEADERSHIP.
BEHIND THE SCENES NIH-WIDE
WORKING GROUPS, LYMPHATIC
COORDINATION COMMITTEE.
THEY HAVE BEEN INSTRUMENTAL.
WE'VE BEEN COMMUNICATING WITH
THEM GETTING THEIR FEEDBACK AND
INTEGRATING FEEDBACK INTO THE
COMMISSION'S WORK AND LAST BUT
NOT LEAST NHLBI SUPPORTS
WORKSHOPS, THANK YOU, ALL THE
MEETINGS ARE ACCESSIBLE BECAUSE
OF YOU GUYS.
THANK YOU FOR ALL THE QUESTIONS
WE ASK IS YES.
THANK YOU.
THIS IS THE END OF THE OPEN
SESSION.
WITH THAT, YOU GUYS WILL NOT SEE
THE REST OF IT.
WE'RE SAYING SAFE TRAVELS.
THIS IS THE END OF THE OPEN 6161 04:05:56,975 SESSION.