>>WELCOME TO TODAY'S
85th MEETING OF NCRA.
WE APPRECIATE YOU BEING HERE, AS
ALWAYS.
AND WE THANK YOU FOR MAKING THE
TIME TO SPEND YOUR AFTERNOON
WITH US AND HEAR A LITTLE BIT
ABOUT WHAT WE'VE BEEN UP TO AT
NCI.
AND SOME OF THE HAPPENINGS
ACROSS THE CANCER ADVOCACY
COMMUNITY.
I'LL HAND IT OVER TO ANGIE IN
JUST A MOMENT TO GET US
UNDERWAY, BUT JUST TO LET YOU
KNOW WE'RE LOOKING FORWARD TO
OUR AGENDA TODAY.
WE'LL HEAR FROM OUR DIRECTOR,
DR. SHARPLESS.
WE'LL HAVE A LEDGE UPDATE AS
ALWAYS AND A CHANCE TO HEAR
TODAY FROM SOME OF NCI'S
LEADERSHIP IN CANCER CONTROL AND
POPULATION SCIENCE CONTROL AND
OFFICE OF CANCER SURVIVORSHIP,
BOTH PORTIONS OF NCI OFTEN HAVE
WORK THAT RELATES TO THE
ADVOCACY COMMUNITY AND IS OF
INTEREST TO THE ADVOCACY
COMMUNITY, WE'RE INTERESTED IN
HEARING FROM LEADERSHIP ABOUT
WHAT THEY ARE UP TO AND VISION
FOR THE FUTURE.
SECOND HALF OF THE MEETING TODAY
WE'LL BE TALKING ABOUT CANCER
ADVOCACY TRAINING, SOMETHING
THAT'S IMPORTANT TO THE RESEARCH
COMMUNITY AS WELL AS ADVOCACY
COMMUNITY GROOMING THE NEXT
GENERATION OF STRONG CANCER
RESEARCH ADVOCATES.
I THANK THE STAFF FOR GETTING
US HERE.
ANGIE, OUR CHAIR, FOR HELPING US
THINK THROUGH THE AGENDA, AND
APPRECIATE THE TIME YOU PUT INTO
THIS BOARD.
WITH THAT I'LL HAND IT OVER TO
ANGIE TO GET US UNDERWAY.
HERE WE GO.
>> GREAT TO SEE EVERYONE.
THANK YOU, AMY.
I'M EXCITED ABOUT TODAY'S
AGENDA, AMY AND VINCENT DID A
GREAT JOB PULLING SPEAKERS AND
AGENDA TOGETHER, A VERY PACKED
DAY.
I THINK WE'RE GOING TO HAVE A
GREAT CONVERSATION AND HOPEFULLY
A LIVELY CONVERSATION TODAY.
I'M GOING TO START BY CALLING
THE MEETING INTO ORDER AND
READING OUR OPENING STATEMENT.
AS COMMITTEE MEMBERS, I WANT TO
REMIND YOU YOU MUST ABSENT
YOURSELF DURING DISCUSSIONS WHEN
YOUR PARTICIPATION ON A
DELIBERATION ON PRODUCT, PROGRAM
OR SPECIFIC MATTER COULD
CONSTITUTE CONFLICT OF FROM OR
CREATE APPEARANCE OF ONE.
IT'S INCUMBENT UPON YOU TO
ADVISE THE EXECUTIVE SECRETARY
AND ABSTAIN FROM ANY
PARTICIPATION IN DISCUSSION OR
ACTION REGARDING THAT MATTER IN
LIGHT OF POLICIES GOVERNING
CONFLICT OF HAVE BASED ON
SPECIAL HOLDINGS OF SPECIAL
GOVERNMENT EMPLOYEES, WHICH
INCLUDES ALL MEMBERS OF THIS
COMMITTEE, WE MUST DEPEND ON TO
YOU VOLUNTARILY ABSENT YOURSELF
DURING ANY AND ALL DISCUSSIONS
OF MATTERS THAT COULD
CONCEIVABLE IMPACT THE STATUS OF
THOSE HOLDINGS.
A QUORUM OF BOARD MEMBERS IS
REQUIRED FOR EACH INSTANCE IN
WHICH A VOTE OCCURS IN OPEN
SESSION.
A MINIMUM OF 6 APPOINTED MEMBERS
MUST BE PRESENT TO VOICE THEIR
VOTES, NEW MEMBERS NOT VOTING
UNTIL CLEARED BY ETHICS AND
OFFICE OF HUMAN RESOURCES.
MEMBERS OF THE PUBLIC WHO WISH
TO EXPRESS VIEWS BY WRITE MISS
AMY WILLIAMS, EXECUTIVE
SECRETARY, WITHIN TEN DAYS OF
THE MEETING AND WRITTEN
STATEMENTS BY MEMBERS OF THE
PUBLIC WILL RECEIVE CAREFUL
CONSIDERATION.
I WELCOME YOU TO THE 85th NCRA
MEETING.
I'M LOOKING FORWARD TO OUR FIRST
SPEAKER, DR. NED SHARPLESS, NCI
DIRECTOR.
I THINK WE HAVE A LOT ON THE
AGENDA.
HE'S GOT A PACKED UPDATE.
REALLY LOOKING FORWARD TO THIS
PRESENTATION.
>> GREAT.
GOOD MORNING.
GOOD AFTERNOON, EVERYONE.
GOOD TO SEE YOU VIRTUALLY.
IT'S A BIG DAY FOR THE NCI.
WE FOUND OUT THIS MORNING
THERE'S BEEN SOME PROGRESS
AROUND THE 22 APPROPRIATION
OMNIBUS SPENDING BILL, I'LL TALK
ABOUT THAT, HOLLY WILL TALK
ABOUT THAT IN THE LEGISLATIVE
UPDATE.
I'M BACK IN THE OFFICE BUT ALSO
BACK IN THE OFFICE WITH LOTS OF
OTHER PEOPLE FROM THE DIRECTOR'S
OFFICE TODAY SO THIS IS ONE OF
THE FIRST DAYS WE'VE HAD MANY
PEOPLE BACK SIMULTANEOUSLY WITH
REAL IN-PERSON WORK FOR A
DEPUTY'S MEETING, IN FACT.
SOME OF THESE PEOPLE LIKE DOUG
LOWY I SEE EVERY DAY BY ZOOM
CHAT FOR TWO YEARS, IT'S STILL
QUITE DIFFERENT TO BE IN THE
ROOM WITH EVERYONE, TALKING
ABOUT MAKING PROGRESS FOR
CANCER, INVIGORATING AND
WONDERFUL, GOOD TO SEE SO MANY
OLD FRIENDS.
THINGS HAPPENED WHILE WE WERE
GONE.
MY PLANTS ALL DIED.
SOME OF THE LIGHTS DON'T WORK.
BUT IT'S STILL GREAT TO BE BACK.
TODAY I THOUGHT I WOULD TALK
ABOUT WHAT'S HAPPENED OVER THE
PAST YEAR, BRIEFLY TAKE STOCK,
MENTIONING SOME ACTIVITIES
AROUND THE NATIONAL CANCER ACT
ANNIVERSARY, THAT WENT REALLY
WELL.
I THANK THOSE WHO HELPED MOVE
THAT ALONG.
I WANT TO TALK ABOUT FISCAL YEAR
22, NOW THAT WE HAVE SOME NEWS.
I WANT TO TALK ABOUT THE
PRESIDENT'S ANNOUNCEMENTS AROUND
THE SUPER CHARGED CANCER
MOONSHOT.
I WANT TO SUMMARIZE SOME
EXCITING RESEARCH DEVELOPMENTS
IN CANCER RESEARCH THAT HAPPENED
IN THE LAST QUARTER SINCE WE
LAST SPOKE.
ALSO, I AIM TO LEAVE TIME FOR
DISCUSSION.
NEXT SLIDE PLEASE.
SINCE WE LAST MET WE'VE
CELEBRATED THE ACTUAL
ANNIVERSARY OF THE SIGNING OF
THE NATIONAL CANCER ACT,
DECEMBER 23 OF LAST YEAR.
IT WAS GRATIFYING TO SEE THE
TSUNAMI OF INTEREST ACROSS THE
CANCER RESEARCH COMMUNITY AROUND
THE ANNIVERSARY.
WE HAD GREAT BUY-IN IN CANCER
CENTERS, ACADEMIC INSTITUTIONS,
SOCIETIES AND FOUNDATIONS THAT
ARE INTERESTED IN CANCER
RESEARCH.
I THINK IT WAS A VERY GOOD KIND
OF CONVERGENCE AROUND THE
NATIONAL CONVERSATION AROUND
CANCER.
IT WAS USEFUL IN MANY WAYS, I
THINK ONE OF THE IMPORTANT
PARTNERS IN THIS COMMUNICATION
IS CONGRESS OF COURSE, SO I
THINK HAVING SO MANY MEMBERS
FROM CONGRESS HERE FOR DISPARATE
VOICES WAS TIMELY AND GOOD.
AND A LOT OF GREAT MEDIA PICKUP.
I THINK WE GOT TO TELL A LOT OF
STORIES OF CANCER RESEARCH, MARY
LASKER AND -- AND WHAT HAPPENED
THE LAST FIVE DECADES AND A LOT
ABOUT WHERE WE STILL NEED TO GO,
600,000 AMERICANS ARE STILL
DYING OF CANCER EVERY YEAR,
CANCER, EVEN IN PATIENTS WHERE
WE CAN CURE THEM, THEY ARE OFTEN
LEFT WITH TERRIBLE SURVIVORSHIP
CHALLENGES, NEED FOR MORE
RESEARCH IN CERTAIN CANCERS THAT
HAVE PROVEN ELUSIVE FOR
THERAPEUTIC ADVANCES, ET CETERA.
I THINK IT WAS A GREAT TIME TO
TAKE STOCK OF WHAT'S HAPPENED,
AND NOW THAT WE HAVE PRESIDENT
BIDEN TALKING SO MUCH ABOUT THE
FUTURE OF CANCER RESEARCH AND
NEW CANCER MOONSHOT WHAT'S GOING
TO COME NEXT.
ONE LAST THING, ON THE NEXT
SLIDE PLEASE, FIRST LADY DR.
JILL BIDEN HAS BEEN A WONDERFUL
PARTNER IN A LOT OF OUR
COMMUNICATIONS EFFORTS AROUND
THE NCIA 50 AND NEED FOR CANCER
SCREENING.
DR. BIDEN HAS BEEN A CLARION
VOICE ON THESE TOPICS, GREAT TO
WORK WITH HER OFFICE.
SHE CREATED THIS GREAT VIDEO I'D
LIKE TO SHOW YOU.
IF I COULD HAVE THE A V PEOPLE
TO PLAY IT FOR ME PLEASE.
IT'S COMING UP.
NO SOUND.
>> FIGHT THE FIGHT AGAINST
CANCER.
SINCE THEN, RESEARCHERS,
POLICYMAKERS, PATIENTS,
SURVIVORS, 50 YEARS AGO A
DEDICATED COALITION OF ADVOCATES
CAME TOGETHER TO WITNESS
PRESIDENT NIXON SIGN THE
NATIONAL CANCER ACT OF 1971.
ON THAT DECEMBER DAY, THE UNITED
STATES WROTE THE FIRST CHAPTER
IN OUR UNIFIED FIGHT AGAINST
CANCER.
SINCE THEN, WE'VE INVESTED IN
PEOPLE AND SCIENCE, ADVANCING
CANCER SCREENING, PREVENTION,
DIAGNOSIS AND TREATMENT.
WE'VE HELPED MILLIONS OF
PATIENTS LIVE LONGER FULLER
LIVES.
BUT DESPITE OUR TREMENDOUS
PROGRESS, THE HEARTBREAKING
REALITY IS THAT CANCER IS STILL
A LEADING CAUSE OF DEATH IN OUR
COUNTRY.
WE STILL DON'T HAVE ENOUGH
METHODS TO PREVENT IT.
SOME TREATMENTS COME WITH
SERIOUS SIDE EFFECTS.
AND INEQUITIES LEAD TO FAR TOO
MANY LIVES LOST.
IN 1971, THEN-PRESIDENT NIXON
CALLED FOR A TOTAL NATIONAL
COMMITMENT TO FINDING A CURE.
NOW, WE'RE READY TO DO MORE.
TO END CANCER AS WE KNOW IT.
IT'S AN AMBITIOUS GOAL, BUT FROM
BRILLIANT RESEARCHERS TO
PASSIONATE PROVIDERS TO INFORMED
AND ENGAGED PATIENTS, I'VE SEEN
THE HEART AND GRIT OF OUR
COMMUNITIES.
THERE IS NOTHING OUT OF OUR
REACH.
CANCER IS PART OF THE BIDEN
FAMILY STORY.
IT'S PART OF SO MANY AMERICAN
STORIES.
CANCER TOUCHES US ALL.
BUT TOGETHER, WE CAN CHANGE THAT
STORY.
WE CAN END THE TRAGEDY OF CANCER
AS WE KNOW IT.
AND NOTHING WILL STOP US.
*
>> GREAT.
THANK YOU.
COULD I HAVE THE SLIDES BACK UP?
MAYBE A FEW POINTS TO MAKE ABOUT
THAT.
I THINK THE FIRST LADY'S A
REALLY GOOD SPOKESMAN.
>> A LIFETIME AGO.
>> OH, WAIT.
THE SLIDES BACK UP PLEASE.
SHE'S REALLY A COMPELLING
SPOKESPERSON FOR OUR ISSUES, I
THINK SHE TALKED ABOUT THE
BURDEN OF CANCER STILL PERSIST,
NEED FOR ADDITIONAL PROGRESS,
THE TOLL OF CANCER ON THE
AMERICAN PUBLIC TODAY.
AND USED THESE PHRASES THAT
WE'RE USING, PRESIDENT'S PHRASE
OF ENDING CANCER AS WE KNOW IT,
THE NCI'S LANGUAGE AROUND THE
NCA 50 NOTHING WILL STOP US.
WE APPRECIATE THEIR SUPPORT.
YOU NOTICED ON THE OPENING
SCREEN A LOT OF FACES, SOME I
SUSPECT WERE VERY FAMILY
INCLUDING PROMINENT CANCER
ADVOCACY COMMUNITY, THIS
MATERIAL IS HELPFUL AND SHOWS
WHAT A TOP PRIORITY THIS IS FOR
THE BIDEN ADMINISTRATION.
NEXT SLIDE.
LET ME SAY WORDS ABOUT THE
BUDGET INCLUDING FY 22.
HOLLY WILL SPEAK MORE ABOUT
THAT.
OUR ALLOCATION FOR THE LAST
COUPLE YEARS IS SHOWN HERE,
INCLUDING, YOU KNOW, THE OMNIBUS
APPROPRIATIONS ACT WE LEARNED
ABOUT THIS MORNING.
THIS IS NOT PASSED YET.
THIS STILL -- THERE'S STILL A
LITTLE BIT OF WORK TO DO BUT
THIS IS A FAIRLY ADVANCED DRAFT
AND HOLLY CAN DESCRIBE HOW
LIKELY WE THINK THIS IS TO COME
INTO LAW.
SO, WHAT YOU SEE HERE IS THAT
FIRST OFF THERE'S BEEN STEADY
INCREASE IN FUNDING FOR THE NCI
SINCE 2015, REFLECTING THE
BIPARTISAN SUPPORT FOR CANCER
RESEARCH THAT EXISTS IN
CONGRESS.
WE ALSO SEE IN 2017 ORANGE BARS
APPEAR, THAT'S THE 21ST CENTURY
CURES ACT, FUNDING FOR THE
ORIGINAL CANCER MOONSHOT.
AND AS THIS SHOWS HERE, THAT'S
SLATED TO GO TO $194 MILLION IN
2022, FROM A PEAK OF $400
MILLION IN 2019.
THE GREEN BAR STARTING IN 2020
IS THE CHILDHOOD CANCER DATA
INITIATIVE, CCDI FOR TEN YEARS,
TOTAL OF TEN YEARS OF FUNDING.
ALSO IN 2021 WE RECEIVED A
ONE-TIME APPROPRIATION OF
FUNDING FOR SEROLOGY RESEARCH
RELATED TO COVID PANDEMIC, I'VE
SPOKEN TO THIS GROUP BEFORE
ABOUT EXCITING THINGS THE NCI
USED THOSE FUNDS FOR AND
CONTINUES, THE EXCITING COVID
RESEARCH WE CONTINUE TO LEAD
HERE AT THE NATIONAL CANCER
INSTITUTE.
OF COURSE THE NEW NEWS, I
MENTIONED THE OMNIBUS
APPROPRIATIONS ACT FOR FY 22, IT
WOULD INCLUDE $350 MILLION
INCREASE OVER FY 21 FOR NCI,
TOTAL BUDGET $6.9 BILLION, A
GOOD NUMBER, REFLECTS ROBUST
SUPPORT FOR NATIONAL CANCER
INSTITUTE, WITH FLEXIBILITY TO
DO NEW THINGS.
NEXT SLIDE.
ONE OF THE FIRST THINGS WE'LL
HAVE TO DEAL WITH IS THIS ISSUE.
UP UNTIL, WELL, EVEN THROUGH
TODAY WE'RE OPERATING UNDER
INTERIM PAY LINES.
SO THEY ARE SHOWN HERE.
THESE ARE THE PAYLINES TO DECIDE
ABOUT FINDING FOR R01s,
P01s, GRANTS IN THE RPG POOL,
ESTABLISHED, EARLY STAGE,
R21s, ET CETERA.
WE HAD CONSERVATIVE INTERIM
PAYLINES THROUGH THE FISCAL
YEARS THAT BEGAN OCTOBER 1, BUT
BECAUSE WE'VE BEEN OPERATING
UNDER CONTINUING RESOLUTION
UNTIL NOW, PERHAPS THROUGH THE
NEXT FEW DAYS, WE'VE ADOPTED A
CONSERVATIVE POSTURE IN TERMS OF
PAYLINES.
BUT I HAVE EVERY HOPE AND
EXPECTATION NOW THAT WE HAVE
SOME CLARITY AROUND OUR BUDGET
AND SHOULD OMNIBUS
APPROPRIATIONS ACT BE PASSED AND
SIGNED THEN I THINK WE COULD
IMPROVE THESE PAYLINES AND ALSO
THE ISSUE ABOUT THE CUT TO
NON-COMPETING RENEWALS.
RIGHT NOW WE'RE PAYING THOSE AT
90% OF PRIOR YEAR FUNDING, VERY
HARD ON INVESTIGATORS, SO I
BELIEVE WE'LL BE ABLE TO RESTORE
SOME CUTS AND IMPROVE PAYLINES,
KEEPING IN MIND FOR 2021 OUR
ESTABLISHED INVESTIGATOR PAYLINE
WAS 11%.
SO 9% IS A LOT LOWER THAN THAT.
WE'D LIKE TO BE CLOSER TO WHERE
WE WERE IN 21.
BUT WE'LL SEE, YOU KNOW, WE NOW
HAVE TO WORK THROUGH THE BUDGET
AND SEE WHAT WE CAN AFFORD AND
WE'LL BE UPDATING OUR PAYLINES
VERY SOON.
NEXT SLIDE.
AS I MENTIONED, THERE'S STRONG
BIPARTISAN SUPPORT FOR THE NCI.
I WANT TO POINT OUT TWO RECENT
OP EDS THAT HAVE BEEN VERY
IMPORTANT IN THE NATIONAL
CONVERSATION, SCIENTIFIC
AMERICAN ARTICLE FROM DECEMBER,
BIPARTISAN APPROPRIATORS WHO
BELIEVE THE CANCER RESEARCH AND
NCI FUNDING IS A VERY GOOD USE
OF FEDERAL MONIES.
AND HOW THEY HAVE UNDERSTOOD OUR
PROBLEM AT THE NCI THAT WE HAVE
A LOT OF GREAT PROPOSALS FOR
SCIENTIFIC FUNDING THAT WEREN'T
ABLE TO FUND BECAUSE OF OUR VERY
LOW PAYLINES.
SO THESE AND OTHER MEMBERS OF
CONGRESS HAVE ASKED TO DO
SOMETHING ABOUT IT THROUGH
INCREASED APPROPRIATION, ON THE
ORDER OF A BILLION-DOLLAR BOOST
IS THE NUMBER THEY USED.
ON THE RIGHT CARYN LERMAM, AND
ROB WINN, WHO WROTE A VERY NICE
OP ED ABOUT THE FEED FOR
CONTINUED FUNDING FOR CANCER
RESEARCH.
CITE A 2020 REPORT, SORT OF
PROVIDING PERSPECTIVE THE NCI
BUDGET IS VERY SMALL RELATIVE TO
THE SIZE OF THE PROBLEM IT SEEKS
TO ADDRESS.
AND WE THINK THAT'S A COMPELLING
ARGUMENT.
WE'RE ENCOURAGED TO SEE THE $353
MILLION INCREASE THAT'S
SUGGESTED IN THE OMNIBUS,
GREATFUL FOR SUPPORT FROM
COMMUNITY AND CONGRESS THIS
REFLECTS.
NEXT SLIDE.
ALSO VERY IMPORTANT IN THE NEWS
LAST MONTH PRESIDENT BIDEN
ANNOUNCED PLAN TO SUPER CHARGE
CANCER MOONSHOT AND REIT RATED
THIS, AGAIN IN THE STATE OF THE
UNION ADDRESS, WE KNEW THIS WAS
A TOP DOMESTIC PRIORITY BUT TO
HAVE HIM CONVENE THIS LARGE
GROUP IN THE EAST WING OF THE
WHITE HOUSE AND BRING THESE
MEMBERS OF THE CABINET AND
MEMBERS OF CONGRESS AND TERRIFIC
CANCER ADVOCATES AND LEADERS AND
TALK ABOUT THIS NEED WITH THE
VICE PRESIDENT AND FIRST LADY
WAS GALVANIZING, A KICKOFF TO
THE NEXT PHASE OF THE MOONSHOT.
IMPORTANT TO NOTE THE INITIAL
MOONSHOT BEGAN IN 2016 WITH
APPROPRIATION FOR 21ST CENTURY
CURES, AND ABLY LED BY DINAH
SINGER, PROVIDING A GREAT
PLATFORM OF INITIATIVES IN
SCIENCE AND RESEARCH ON WHICH WE
CAN BUILD THE NEXT PHASE OF THE
MOONSHOT.
WE HAVE COMPLETE CONFIDENCE THAT
PRESIDENT BIDEN WILL TAKE THE
NECESSARY STEPS TO ENSURE THAT
THIS AGENDA FOR CANCER RESEARCH
STAYS ON TRACK TO CHANGE THE
EXPERIENCE OF CANCER FOR OUR
PATIENTS.
HE TALKED ABOUT A WHOLE OF
GOVERNMENT APPROACH, SOMETHING
THAT'S BIGGER THAN THE NATIONAL
CANCER INSTITUTE.
HE MENTIONED A CANCER CABINET,
I'M HONORED TO BE PART OF THAT,
BRINGING TOGETHER AGENCIES TO
DISCUSS STUDENTS OF
OPPORTUNITIES, INCLUDING HHS,
NIH, NCI, DEPARTMENT OF ENERGY,
DEPARTMENT OF DEFENSE, CMS,
OSTP, CDC, FDA, EPA, ET CETERA.
SO A BOLD VISION TO CENTRALIZE
AND PLAN CANCER RESEARCH
THROUGHOUT THE FEDERAL
GOVERNMENT.
AND IS THE CANCER CABINET THAT
WILL BE MEETING SOON FOR KICKOFF
MEETING, I'M VERY EXCITED FOR
THAT TO TAKE OFF.
NEXT SLIDE.
THE PRESIDENT ANNOUNCED IN
ADDITION TO CANCER CABINET A FEW
GOALS OF THE SUPER CHARGED
CANCER MOONSHOT.
ONE THAT I THINK IS VERY GOOD
GOAL BECAUSE IT'S VERY
MEASURABLE IS THIS NOTION TO
REDUCE CANCER MORTALITY ON THE
ORDER OF 50% IN 25 YEARS.
THAT'S REDUCTION FROM 146 DEATHS
PER 100,000 TODAY TO 73 DEATHS
PER 100,000 INDIVIDUALS IN THE
FUTURE, THAT'S AGE ADJUSTED
MORTALITY TO ACCOUNT FOR CHANGES
IN AMERICAN DEMOGRAPHICS.
AND THAT WOULD MAKE CANCER A
MUCH LESS OF A BURDEN ON
AMERICAN SOCIETY, A HUGE
REDUCTION IN CANCER MORTALITY, A
HUGE STEP TOWARDS CHANGING THE
NATIONAL EXPERIENCE OF CANCER
AND THERE BY ENDING CANCER AS WE
KNOW IT.
CERTAINLY THERE'S NO SINGLE WAY
TO DO THAT KIND OF REDUCTION IN
MORTALITY THAT.
WOULD REFLECT MANY AREAS OF
CANCER PROGRESS, LIKE
PREVENTION, SCREENING, BETTER
THERAPIES, CONTINUED SUCCESS IN
TOBACCO CONTROL, LOTS OF OVER
STUFF. -- OTHER STUFF.
CANCER MORTALITY HAS DECLINED
SINCE THE '90s, A TRAJECTORY
TO BUILT BUT WE HAVE TO FURTHER
ACCELERATE PROGRESS, THAT'S WHAT
THE WHITE HOUSE IS ASKING US TO
DO.
I THINK HAVING -- VIEWING THIS
EFFORT THROUGH A HARD METRIC
LIKE AGE-ADJUSTED CANCER MOTHER
AT -- MORTALITY THAT IS
MEASURED EVERY YEAR I THINK IS A
GREAT WAY TO THINK ABOUT CANCER
MOONSHOT.
NEXT SLIDE.
SO HERE'S -- JUST TALKING ABOUT
THE PRISM OF MORTALITY, CANCER
MORTALITY FOR A MOMENT LONGER, I
MENTIONED THIS PROGRESS WE MADE
IN TERMS OF AGE-ADJUSTED
MORTALITY.
[AUDIO DISTORTION]
A VISUAL DISPLAY SINCE 2005.
YOU SEE THE IMPRESSIVE
IMPROVEMENT IN EVERY STATE IN
THE NATION, CANCER MORTALITY
DECLINED IN THE LAST 15 YEARS.
WITH A FEW EXCEPTIONS.
THERE ARE A FEW STATES WHERE
PROGRESS HAS NOT BEEN AS GOOD,
AND THAT'S AN INTERESTING
OBSERVATION, WHY CANCER
MORTALITY HAS LAGGED TO SOME
EXTENT IN CERTAIN GEOGRAPHIES
VERSUS OTHER PARTS OF THE
COUNTRY.
NEXT SLIDE.
BUT THIS IS -- WHEN YOU THINK
ABOUT INTERACTION BETWEEN
MORTALITY AND GEOGRAPHY THAT'S
EVEN MORE INTERESTING WHEN YOU
BREAK IT OUT BY RACE AND
ETHNICITY.
A BIG PART OF ENDING CANCER AS
WE KNOW IT IS ENDING CANCER FOR
ALL AMERICANS, REGARDLESS OF
WEALTH, ACCESS, RACE, EDUCATION,
AND BARRIERS TO CARE.
SO REALLY ENDING CANCER IS ABOUT
PROMOTING HEALTH EQUITY IN LARGE
PART.
I THINK THIS SORT OF ANALYSIS
HELPS ONE THINK ABOUT WHAT THAT
WOULD MEAN.
I THINK THESE -- BREAKING OUT
CANCER MORTALITY BY RACE AND
ETHNICITY MAKES INTERESTING
POINTS.
YOU CAN SEE THERE ARE AREAS OF
THE COUNTRY THAT HAVE NOT DONE
AS WELL AS OTHER PARTS, STRONG
INTERACTION BETWEEN GEOGRAPHY
AND RACE AND MORTALITY.
YOU CAN SEE FOR ALL RACES
THERE'S BEEN IMPROVEMENT, BUT
NOT NECESSARILY THE SAME RATES,
THAT SOME STATES AND SOME RACES
HAVE HAD MORE IMPROVEMENTS THAN
OTHERS, THAT'S AN INTERESTING
QUESTION WHY.
ONE THING I FIND PARTICULARLY
INTERESTING IS THE NON-HISPANIC
AMERICAN INDIAN AND ALASKA
NATIVE DATA SHOWN SECOND FROM
THE LEFT SET OF MAPS.
YOU SEE TREMENDOUS
HETEROGENEITY, SOME TRIBAL
NATIONS AND AMERICAN INDIAN
POPULATIONS DO QUITE WELL IN
TERMS OF CANCER MORTALITY,
OTHERS DO VERY POORLY.
AND SO WHAT EXPLAINS THIS
AMAZING HETEROGENEITY THAT YOU
WOULDN'T APPRECIATE FROM
AGGREGATE STATISTICS?
THIS IS THE KIND OF THING THE
NCI NEEDS TO BE DOING TO REALLY
UNDERSTAND CANCER MORTALITY
DISPARITIES, WE HAVE TO
UNDERSTAND WHAT CAUSES THESE AND
WHAT DRIVES THEM AND WHAT ARE
THE BARRIERS THAT CAUSE THEM TO
PERSIST AND THERE BY HOW DO WE
ADDRESS THEM.
NEXT SLIDE.
SO WORKING WITH COLLEAGUES IN
THE WHITE HOUSE WE THOUGHT ABOUT
WHAT IT WOULD MEAN TO END CANCER
AS WE KNOW IT.
I MENTIONED THE FRAME OF
MORTALITY, THAT'S NOT THE ONLY
WAY TO THINK ABOUT THE PROBLEM.
HERE ARE OTHER WAYS THAT THE
WHITE HOUSE AND OSTP WOULD LIKE
US TO THINK ABOUT THE NATIONAL
EXPERIENCE OF CANCER, NOT A
COMPLETE LIST, THIS IS NOT THE
ONLY THINGS WE'RE CARE ABOUT.
IT WILL BE BROADER BUT THIS IS A
GOOD START, SORT OF THINGS ONE
SHOULD CONSIDER WHEN DESCRIBING
THE NATIONAL CONVERSATION OF
CANCER, THINGS LIKE DIAGNOSIS OF
CANCER, PREVENTION, ADDRESSING
INEQUITIES, PERSONALIZED
MEDICINE, TARGETING THE RIGHT
TREATMENT TO THE RIGHT PATIENT,
ET CETERA.
I WON'T READ ALL HERE BUT THIS
IS TO EMPHASIZE THE POINT WE'RE
THINKING ABOUT MORTALITY, A
MEASURABLE AND IMPORTANT METRIC
OTHER WAYS TO MEASURE PROGRESS
AND MAKE PROGRESS IN THOSE
AREAS.
NEXT SLIDE.
ONE THING THE PRESIDENT HAS BEEN
FOCUSED ON, FIRST LADY AS WELL,
ISSUE OF PREVENTION SCREENING
AND EARLY DETECTION, MENTIONING
THIS IN THIS IS EVENT ON
FEBRUARY 2 IN THE WHITE HOUSE.
WE'VE HAD ON THE ORDER OF 10
MILLION MISSED SCREENING EVENTS
FOR CANCER DURING THE PANDEMIC
PERIOD.
THESE ARE MAMMOGRAMS, CERVICAL
CANCER SCREENING, LUNG CANCER
SCREENING, COLORECTAL CANCER
SCREENING.
SHOWN ON THE RIGHT HERE IS THAT
GRAPH FOR COLON CANCER
SCREENING, DRAMATIC PLUMMETING
OF COLONOSCOPIES, FOR EXAMPLE,
IN MARCH, APRIL, MAY OF 2020.
AND SOME RECOVERY BUT STILL NOT
COMPLETE RECOVERY IN THE UNITED
STATES.
WE STILL HAVE A LAGGING IN TERMS
OF CANCER CARRY, INCLUDING
IMPORTANT SCREENING EVENTS.
SO HOW TO GET PEOPLE BACK ON
TRACK IN TERMS OF CANCER CARE
AND SCREENING IS AN IMPORTANT
THING TO DISCUSS RIGHT NOW.
AND WE HAVE A LOT OF THOUGHTS ON
THIS.
SO WE THOUGHT ABOUT ARE THERE
WAYS TO DO CANCER SCREENING,
AT-HOME SCREENING FOR COLON
CANCER OR HPV, CERVICAL CANCER,
MOBILE SCREENING IN THE
COMMUNITIES WITHOUT EASY ACCESS
TO CLINIC OR USE OF COMMUNITY
HEALTH NETWORKS.
THE MOONSHOT HAVING A
TRANSGOVERNMENT APPROACH WILL
ALLOW OPPORTUNITIES TO THINK
ABOUT NEW WAYS THE NCI CAN WORK
WITH OTHER PARTS OF GOVERNMENT
TO FACILITATE CANCER SCREENING.
AND IMPORTANTLY, THE PRESIDENT'S
CANCER PANEL RELEASED A REPORT
ON INEQUITIES IN CANCER
SCREENING, IDENTIFIED SOME
REALLY IMPORTANT GAPS AND
BARRIERS, THINGS LIKE KNOWLEDGE
OF THE GUIDELINES, SOME
PHYSICIANS DON'T REALLY --
CAREGIVERS DON'T APPRECIATE WHEN
SCREENING IS INDICATED, AND
FEARS ABOUT MEDICAL PROCEDURES
THAT MAY OR MAY NOT BE VALID
CONCERNS IN SOME PATIENT
POPULATIONS.
OFTEN PROVIDERS DON'T RECOMMEND
INDICATED SCREENING, HOW DO WE
CHANGE THAT.
THIS PROVIDES AN OPPORTUNITY TO
ADDRESS CANCER MORTALITY AND
PROMOTE HEALTH EQUITY WHERE THE
NCI BELIEVES WE CAN DO MORE AND
WE'RE EAGER TO WORK WITH OTHER
PARTS OF GOVERNMENT.
KATRINA GODDARD WILL TALK ABOUT
THE PCP REPORT.
NEXT SLIDE.
ONE OF THE THINGS THE NCI IS
WORRIED ABOUT SINCE BASICALLY
MARCH OF 2020, IT OCCURRED TO US
THAT PEOPLE WERE GOING TO MISS
CANCER CARE BECAUSE OF THE
PANDEMIC.
AND WE DID SOME MODELING AND
REQUIRED SOME DATA FOR THE
CANCER DATA, CLEAR THIS WAS
HAPPENING, AND IT'S SORT OF
LIKE, YOU KNOW, WATCHING A
HORROR MOVIE, YOU KNOW WHAT'S
GOING TO HAPPEN BUT THERE'S A
HELPLESS FEELING YOU CAN'T DO
MUCH ABOUT IT BECAUSE WE KNOW IF
MARTIN -- IF MILLIONS FORGO, IT
WILL BE POTENTIALLY WORSE
OUTCOME, THINGS WE CAN DO TO
AVERT THE PROBLEM TO THE EXTENT
POSSIBLE.
ONE REAL FRIEND OF THIS EFFORT
AS WE FOUND HAS BEEN THE FIRST
LADY'S OFFICE, VERY INTERESTED
IN TALKING ABOUT THIS ISSUE
NATIONALLY, AND HAS DONE A LOT
IN THIS REGARD.
YOU CAN SEE VISITS THAT SHE AND
I HAVE MADE TO CHARLESTON, SOUTH
CAROLINA, TO TAMPA, TO RICHMOND,
TO -- SHE WENT ON GOOD MORNING
AMERICA, IN ARIZONA YESTERDAY,
HAS BEEN CARRYING -- AND SAN
ANTONIO CARRYING THIS MESSAGE
NATIONALLY ABOUT THE VIRTUES OF
SCREENING, NEED TO RETURN TO
SCREENING AFTER THE PANDEMIC,
AND TRYING TO HELP PEOPLE
UNDERSTAND WHY THERE ARE
BARRIERS AND HOW WE CAN DO
THINGS ABOUT THAT, IT'S BEEN A
WONDERFUL COLLABORATION.
AND I THINK THE MEGAPHONE THAT
THE WHITE HOUSE HAS FOR
COMMUNICATIONS HAS BEEN REALLY
USEFUL IN THIS REGARD.
NEXT SLIDE.
ANOTHER THING THE PRESIDENT
SPECIFICALLY MENTIONED IN HIS
REMARKS AT THE KICKOFF EVENT FOR
THE MOONSHOT WAS INTEREST IN
THIS SPECIFIC TECHNOLOGY,
MULTI-CANCER EARLY DETECTION
TESTS.
THERE'S TREMENDOUS INTEREST IN
THIS TOPIC ACROSS THE FEDERAL
GOVERNMENT.
V.A. IS INTERESTED IN THIS.
DoD AND ANY POPULATION THAT
HAS A CANCER SCREENING IS PART
OF THIS MANDATE.
THESE ARE TESTS WITH POTENTIAL
TO SCREEN FOR MANY CANCERS
SIMULTANEOUSLY USING SINGLE
BLOOD-BASED ASSAY IN AN
OTHERWISE HEALTHY INDIVIDUAL.
50 OR OLDER A PATIENT WOULD COME
ONCE A YEAR, EVERY OTHER YEAR,
HAVE A BLOOD TEST AND IN A
HEALTHY INDIVIDUAL, NOT KNOWN TO
BE ILL, WOULD BE TESTED FOR UP
TO 20 TO 50 CANCERS
SIMULTANEOUSLY.
THIS IS EXCITING TECHNOLOGY.
SOME INITIAL CLINICAL TRIALS
HAVE BEEN VERY IMPRESSIVE.
BUT THERE'S A PROBLEM.
FIRST OFF, THERE ARE ABOUT 20
WAYS TO DO THIS IN DEVELOPMENT
THAT I KNOW OF.
THERE ARE PROBABLY ANOTHER 40
THAT HAVEN'T BEEN DISCUSSED,
LESS PUBLISHED.
THERE ARE LOTS OF COMPETING
APPROACHES TO THIS PROBLEM.
WHICH OF THESE IS BEST AND MOST
USEFUL FOR A POPULATION IS
UNCLEAR.
ALSO AS THIS GROUP IS AWARE,
CANCER SCREENING IS ASSOCIATED
OFTEN WITH DETECTION OF INDOLENT
SUBCLINICAL CANCERS THAT MAY NOT
BE CLINICALLY RELEVANT IN A
PATIENT, THEIR DISCOVERY CAN
LEAD TO ISSUES OF OVERDIAGNOSIS
AND OVERTREATMENT, FINDING
CANCER DOESN'T ALWAYS HELP THE
PATIENT.
WE'VE LEARNED THROUGH OTHER
SCREENING INITIATIVES.
WE HAVE UNDERSTAND THE IMPACT OF
THIS TEST ON PATIENT OUTCOMES
AND PATIENT QUALITY OF LIFE AND
THINGS LIKE PATIENT MORTALITY.
SO THESE REQUIRE LARGE COMPLEX
TRIALS THAT WE THINK THE NCI
SHOULD BE INVOLVED IN AND HELP
PLAN.
ONE OF THE THINGS WE HAVE AN RFI
UNTIL MARCH 21 TO TRY AND GET
ADVICE FROM THE COMMUNITY ABOUT
WHAT ENDPOINTS SHOULD BE
CONSIDERED, WHAT TRIALS SHOULD
BE DESIGNED, ET CETERA.
WE'RE HOPING TO GET GUIDANCE
FROM THE CANCER RESEARCH
COMMUNITY ABOUT OUR PLANNING
AROUND MCEDs.
IMPORTANT LEADERSHIP
ANNOUNCEMENTS, THE DESIGNATION
OF DR. ALONDRA NELSON,
PERFORMING DUTIES OF DIRECTOR OF
OSTP, AND DR. FRANCIS COLLINS
WILL STEP IN TO PERFORM DUTIES
OF SCIENCE ADVISER TO THE
PRESIDENT AND CO-CHAIR OF PCAST,
PRESIDENT'S COUNCIL OF ADVISORS
ON SCIENCE AND TECHNOLOGY.
SO IT'S GREAT TO HAVE A TEAM IN
OSTP THAT UNDERSTANDS CANCER
RESEARCH, AND THE NIH, AND CAN
HELP US PLAN THINGS LIKE ARPA-H
AND CANCER MOONSHOT, FINDING A
NEW NIH DIRECTOR, LOTS OF OTHER
THINGS ON THE NATIONAL SCIENCE
DOCKET.
WE LOOK FORWARD TO WORKING WITH
DR. NELSON AND DR. COLLINS, AND
I THINK THIS IS A GOOD
DEVELOPMENT FOR THE NCI GIVEN
PARTICULARLY OUR LONGSTANDING
FRIENDSHIP AND EXPERIENCE WITH
FRANCIS.
NEXT SLIDE.
I WANT TO POINT OUT IN LIGHT OF
RECENT EVENTS AT OSTP,
TERMINATION OF DR. LANDER, THAT
THE NCI IS COMMITTED TO ENSURING
CIVILITY, KINDNESS, MUTUAL
RESPECT IN THE WORKPLACE, THESE
ARE CORE VALUES AT THE NCI AND
NIH.
LOTS OF GOOD REASONS.
WE BELIEVE THIS IS HOW PEOPLE DO
THEIR BEST WORK.
WE BELIEVE IT'S JUST MORALLY
RIGHT TO HAVE AN ENVIRONMENT
WHERE WE DO NOT TOLERATE
BULLYING OR HARASSMENT OF ANY
KIND.
I'M SHOWING HERE A VERY STRONG
QUOTE ON THIS TOPIC FROM DR.
LARRY TABAK, ACTING DIRECTOR OF
NIH, SAYING WE WILL HAVE AN
ENVIRONMENT WHERE PEOPLE FEEL
WELCOME, RESPECTED, VALUED, AND
CONTINUED GROWTH IS GROUNDED IN
EXPECTATION ALL EMPLOYEES
RESPECT ONE ANOTHER IN WORKPLACE
INTERACTIONS.
WE DO LOTS OF THINGS TO ENSURE
WORKPLACE CIVILITY, A WORKPLACE
CIVILITY ANTI-HARASSMENT PROGRAM
COORDINATED BY A COMMITTEE OF
SENIOR REPRESENTATIVES, CLEAR
POLICIES AND PROVIDED TOOL KITS
AND TRAINING, INCORPORATED
ANTI-HARASSMENT INTO OUR
ONBOARDING EXERCISE AND ANNUAL
PERFORMANCE EVALUATION, AND
WE'VE DONE OTHER THINGS TO MAKE
THE NCI A TERRIFIC MILIEU FOR
WORK.
WE SHARE THE COMMITMENT
THROUGHOUT FEDERAL GOVERNMENT
INCLUDING NIH.
NEXT SLIDE.
SHIFTING BACK TO THE ORIGINAL
MOONSHOT, A LOT OF WORK IN
PROGRESS, WE PROUD OF THE 70
CONSORTIA WE'VE CREATED,
NETWORKS AND CONSORTIUMS AND 240
RESEARCH PROJECTS ACCELERATING
CANCER PROJECTS IN THE
TRANSLATION SPACE, A TREMENDOUS
AMOUNT OF INFORMATION AT
cancer.gov, DINAH SINGER AND I
REVIEWED THE TOPIC IN A CANCER
JOURNAL PROVIDING A LOT MORE
EXAMPLES OF THINGS SUPPORTED AND
FUNDING.
FUNDING PLANNED TO SUNSET IN
2023.
SO TO CONTINUE THESE ACTIVITIES
BEYOND 2023 AND TO SUPER CHARGE
AND INCREASE BEYOND 2023 WOULD
REQUIRE ADDITIONAL APPROPRIATION
WHICH WE'LL BE LEARNING ABOUT IN
THE FUTURE.
NEXT SLIDE.
HERE'S A REALLY INTERESTING
STUDY PUBLISHED CO-AUTHORED BY
SCIENTIST FROM DCCPS, CDC,
EXTRAMURAL RESEARCHERS, BENEFIT
OF PHYSICAL ACTIVITY IS NOT YET
KNOWN, THIS USED ACCELEROMETER
MEASUREMENT TO EXAMINE
ASSOCIATION OF ACTIVITY WITH
MORTALITY IN U.S. ADULTS,
ESTIMATED NUMBERS OF DEATHS
PREVENTED BY MODEST INCREASE IN
ACTIVITY, DATA FROM NHANES,
5,000 ADULTS, INCREASED ACTIVITY
ASSOCIATED WITH DECREASE IN
NUMBER OF DEATHS, WITH TEN
MINUTES BEING GOOD, 20 MINUTES
BETTER, 30 MINUTES BETTER STILL.
HOW THIS WORKS WE DON'T FULLY
UNDERSTAND.
ONE OF THE LEADING HYPOTHESES
EFFECT ON OBESITY BUT THERE WILL
BE OTHER EXPLANATIONS, MORE
RESEARCH IS NEEDED.
IT MAKES A POINT A SMALL CHANGE
IN BEHAVIOR AT THE POPULATION
LEVEL COULD HAVE IMPORTANT
IMPACT ON CANCER, THAT COULD
DRIVE AGE-ADJUSTED NATIONAL
MORTALITY.
DATA AT THE BEGINNING OF THE
TALK, ONE THINGS THAT'S
IMPORTANT TO IDENTIFY THESE
THINGS THAT HAVE POTENTIAL
POPULATION LEVEL BENEFIT.
NEXT SLIDE.
WE'RE EXCITED ABOUT PROGRESS IN
THE CHILDHOOD CANCER DATA
INITIATIVE, ABOUT TO START ITS
THIRD YEAR OF FUNDING, TO CREATE
INFRASTRUCTURE AND COMMUNITY TO
AGGREGATE DATA.
A PROVING GROUND OF THESE
TECHNOLOGIES, WE'LL BE ABLE TO
APPLY TO ADULT CANCERS.
WE HELD A SYMPOSIUM IN NOVEMBERI
RECOMMEND VIEWING THE VIDEO IF
YOU'RE INTERESTED IN CHILDHOOD
CANCER RESEARCH.
AND HERE ARE TWO MAJOR
HIGHLIGHTS OF THE PROGRAM, NOT
THE ONLY THINGS CCDI IS DOING
BUT TWO MAJOR COMPONENT, ONE IS
CHILDHOOD MOLECULAR
CHARACTERIZATION INITIATIVE TO
SEQUENCE TUMORS IN OF THIS
SPRING, BEGINNING SOON, TO
CHARACTERIZE AROUND 3,000
CHILDREN WITH HARD TO TREAT
CANCERS, ANNUALLY.
ON THE RIGHT IS NATIONAL
CHILDHOOD CANCER REGISTRY
SEEKING TO INTEGRATE DATA AND
ENSURES TO A COMMON AREA TO BE
USED IN A WAY THAT PRESERVES
PRIVACY OF INDIVIDUALS BUT CAN
BE USED FOR LOTS OF GREAT
RESEARCH PURPOSES.
YOU CAN THINK OF THIS AS THE
CHILDHOOD VERSION OF SEER
MEDICARE BUT WITH OTHER
CAPABILITIES THAT DON'T
CURRENTLY EXIST IN SEER
MEDICARE.
FOR THOSE WHO KNOW, THE SEER
MEDICARE DATABASE IS
TREMENDOUSLY USEFUL FOR CANCER
OUTCOMES IN THE REAL WORLD AND
WE THINK THE REGISTRY WILL PLAY
THIS ROLE FOR PEDIATRIC CANCER.
NEXT SLIDE PLEASE.
AS WE THINK ABOUT WHERE WE CAN
MAKE -- IMPROVE HEALTH EQUITY
THROUGH PREVENTION, CERVICAL
CANCER REMAINS SIGNIFICANT
OPPORTUNITY.
WE MADE GREAT PROGRESS LAST FEW
DECADES THANKS TO SCREENING WITH
PAP SMEARS AND OTHER APPROACHES,
HPV TESTING, ALSO NOW WITH HPV
VACCINATION.
HOWEVER, SOME POPULATIONS STILL
FACE GREATER RISK OF DEVELOPING
THIS DISEASE AND DYING OF THIS
DISEASE.
HISPANIC AND LATINO WOMEN, BLACK
AND AFRICAN AMERICAN WOMEN HAVE
HIGHER RATES OF CERVICAL CANCER
THAN WOMEN OF OTHER RACIAL AND
ETHNIC GROUPS.
BLACK AND AFRICAN AMERICAN WOMEN
IN PARTICULAR HAVE HIGHER RATE
OF DEATH FROM THIS DISEASE.
WOMEN IN RURAL REGIONS, FOR
EXAMPLE, APPALACHIA, HAVE A A
HIGHER INCIDENCE OF MORTALITY
THAN WOMEN FROM URBAN AREAS.
UNDERSTANDING WHAT CAUSES
DISPARITIES AND WHY THEY PERSIST
IS AN IMPORTANT RESEARCH
QUESTION.
SAFETY NET HEALTH CARE SETTINGS
PROVIDE CRITICAL CARE TO MEMBERS
OF THE POPULATION IN TERMS OF
PREVENTION AND SCREENING.
SO IT'S IMPORTANT THEY ARE
EQUIPPED WITH BEST APPROACHES TO
OVERCOME DISPARITIES.
WORKING ACROSS GOVERNMENT WE
FORMED THE FEDERAL COLLABORATIVE
TO SPEED UPTAKE OF GUIDELINES
AND VACCINATION EFFORTS, NCI
INITIATED THIS HHS-WIDE
COLLABORATION TO BRIDGE THE
FEDERAL PRIORITIES OF CANCER
RESEVER AND HEALTH CARE DELIVERY
BY HRSA-SUPPORTED SAFETY NET
SETTINGS OF CARE, AND REPRESENTS
WORK FROM THE NCI, DELIVERABLES
AND GOALS ARE REALLY IMPORTANT,
WITH GUAM, PACIFIC ISLANDS,
TALKING ABOUT WAYS TO MAKE
PROGRESS.
NEXT SLIDE.
ANOTHER COLLABORATION RECENTLY
GIVING INSIGHT, RELATES TO ROLE
OF HP VACCINATION IN SPECIFIC
POPULATIONS AND UNDERSTANDING
WHAT SUBGROUPS THIS VACCINATION
IS MOST EFFECTIVE.
DCEG AND CDC CONDUCTED AN
ANALYSIS THAT PRODUCED CANCER IN
AMERICANS, AND THESE RESULTS
WERE PUBLISHED IN THE JNCI IN
FEBRUARY, ACROSS MAJOR RACIAL
AND ETHNIC GROUPS 84% OF
PRE-CANCERS ATTRIBUTED TO HPV
TIMES TARGETED BY THE NINE
VALENT VACCINE, NOT ALL HPV
SUBTYPES.
THE NINE VALENT VACCINE COULD
PREVENT NEARLY ALL CERVICAL
PRE-CANCER AND INVASIVE CANCERS
AMONG MAJOR RACIAL GROUPS IN THE
UNITED STATES BUT THERE WERE
SOME ADDITIONAL THINGS TO NOTE.
NON-HISPANIC BLACK WOMEN HIGHER
PROPORTION OF SQUAMOUS CERVICAL
PRE-CANCERS TRIBUTE OF
ATTRIBUTED TO NON-VACCINE TYPES,
SPECIFICALLY HPV 35 WAS MORE
PREVALENT WITH SQUAMOUS CERVICAL
PRE-CANCER, 9% VERSUS ON THE
ORDER OF 2% FOR OTHER GROUP,
ADDING TO LITERATURE THAT IT HAS
POTENTIAL IMPORTANT ROLE AMONG
WOMEN OF AFRICAN ANCESTRY, AN
AREA WHERE THE NCI NEEDS TO
UNDERSTAND WHY THIS HAPPENS, IS
THERE SOMETHING WE CAN DO, IN
PARTICULAR DOES THIS LEAD TO
FUTURE VACCINE DESIGN, TO FUTURE
VACCINES THAT MIGHT COVER HPV 35
FOR EXAMPLE.
WHY DO SOME TREATMENTS WORK?
HUNDREDS HAVE BEEN RECEIVING
COMMUNE CHECKPOINT INHIBITORS,
DRUGS LIKE PEMBROLIZUMAB, BUT
DON'T WORK IN THE MAJORITY,
MARVELOUS IN SOME, NOT EVERYONE.
A TEAM ASKED THE QUESTION WHY
SOME PATIENTS BENEFIT,
CONCENTRATING ON MHC MOLECULES.
A TEAM OF SCIENTISTS, WORK
TOGETHER.
THIS PAPER WAS PUBLISHED IN
LANCET ONCOLOGY RECENTLY
POINTING TO A SUBTYPE, HLA- 03,
SHOWN HERE ON THIS KAPLAN-MEIER
SURVIVAL CURVE.
THIS MEANS THIS ALLELE COULD BE
USEFUL MARKER OF SCREENING
MARKER FOR RESPONSE BUT ALSO MAY
HELP US UNDERSTAND WHAT IS
IMPORTANT IN IMMUNE RESPONSE,
THERE BY IMPROVING ONCOLOGY
RESPONSES FOR ALL PATIENTS.
IT'S ALSO IMPORTANT THAT THIS
WORK INCLUDED GROUNDBREAKING
SCIENTIFIC CAPABILITIES OF
FREDERICK NATIONAL LAB.
IRHAVEN'T -- IT'S AN IMPORTANT
PART OF NCI MISSION THAT ALLOWS
THIS KIND OF SCIENCE.
NEXT SLIDE.
WE'VE ALSO BEEN FINDING EVIDENCE
ABOUT THE ROLE OF THE MICROBIOME
IN CANCER RESEARCH.
A RECENT STUDY VERY PROVOCATIVE
BY RESEARCHERS AT CCR AND WITH
COLLABORATORS AT UNIVERSITY OF
TEXAS M.D. ANDERSON SHOWED A
DIET RICH IN FIBER MAY HELP SOME
PEOPLE TREATED FOR MELANOMA IN
TERMS OF RESPONSE TO IMMUNE
CHECKPOINT INHIBITORS, PUBLISHED
IN "SCIENCE" IN DECEMBER.
LOOKING AT COMPOSITION OF FECAL
MICROBE ORGANISMS, GUT
MICROBIOTA, AND SUPPLEMENTS,
CORRELATING CLINICAL FEATURES
WITH RESPONSE TO CHECKPOINT
INHIBITORS AMONG A SMALL SAMPLE,
128 PATIENTS, BUT CERTAIN IN
THAT SAMPLE SAW THIS SIGNIFICANT
ASSOCIATION BETWEEN ASPECTS OF
DIET AND OUTCOME AND PROBIOTIC
USE AND OUTCOME.
THIS IS PROVOCATIVE WORK AND
CERTAINLY REQUIRES ADDITIONAL
LARGER STUDY TO SEE IF WE CAN
UNDERSTAND INTERACTION BETWEEN
THE GUT MICROBIOME AND RESPONSE
TO CHECKPOINT INHIBITORS.
NEXT SLIDE.
OUR EFFORTS TO END CANCER
INCLUDE EFFORTS TO END CHILDHOOD
CANCER, THE NCI HAS BEEN
COMMITTED TO UNRAVELING
INTRICACIES RECOGNIZING CHILDREN
ARE NOT JUST LITTLE ADULTS, THEY
HAVE SPECIAL PROBLEMS AND
SPECIAL ISSUES OF SURVIVORSHIP
AND OTHER THINGS AROUND
TREATMENT AND OUTCOMES IN
CANCER.
AND SO TO HELP GET ADDITIONAL
PERSPECTIVE THINKING ON
CHILDHOOD CANCER I'VE ASKED DR.
WIDEMANNNN TO JOIN PROGRAM
LEADERS, CLAP -- COLLABORATING
WITH EXTRAMURAL INSTITUTIONS,
FAMILIAR WITH NCI'S PORTFOLIO,
HER WORK AROUND THIS TOPIC OF
RAS-OPATHYS AND GROUNDBREAKING
AND LED TO RECENT FDA APPROVAL
OF TREMENDOUS FOR
NEUROFIBROMATOSIS, TERRIFIC TO
HAVE BRIGITTE'S ADVICE, PLANNING
THE CANCER INITIATIVE AND
PORTFOLIO OF CLINICAL TRIALS IN
CHARTER SCHOOLED -- CHILDHOOD
CANCER.
SHE CONTINUES IN HER OTHER ROLE
RUNNING PEDIATRIC ONCOLOGY
BRANCH, SHE'S BUSY.
I'LL CLOSE WITH REFLECTIONS ON
RECENT EVENTS.
I'VE BEEN IMPRESSED BY THE
PHYSICAL LADY'S GRASP AND
INTEREST IN HELPING, SHE ALSO
SPOKE AND ECHOED WHAT I BELIEVE
IS THE SENSE WE'RE LIVING IN A
GOLDEN AGE OF CANCER RESEARCH
AND NOW IS THE TIME FOR A REAL
OPPORTUNITY TO MAKE PROGRESS FOR
OUR PATIENTS.
HER COMMENTS SPEAK VOLUMES, SHOW
THE BIDENS UNDERSTAND CANCER
RESEARCH, THE NEED FOR CANCER
PROGRESS AND BELIEVE THE TIME IS
NOW.
IT'S HARD NOT TO BE INSPIRED BY
THAT.
ALL OF US IN THE ROOM FELT THAT
WAY AT THE EVENT.
SO, I WANT TO CLOSE BY, NEXT
SLIDE, BY ALSO SPEAKING ABOUT
THE VICE PRESIDENT'S COMMENTS AT
THE EVENT.
THE VICE PRESIDENT MENTIONED HER
MOTHER'S WORK, A CANCER
RESEARCHER INTERESTED IN
ESTROGEN RECEPTOR POSITIVE
BREAST CANCER AND DIED OF COLON
CANCER.
YOU COULD REALLY HEAR THE LOVE
AND RESPECT VICE PRESIDENT
HARRIS HAS FOR HER MOTHER, WHEN
SHE WAS TALKING ABOUT HER AT THE
MOONSHOT EVENT.
SHE SAID THIS, IT'S A NICE
QUOTE.
IN AMERICA WE NOT ONLY DREAM BUT
WE DO.
WE NOT ONLY SEE WHAT CAN BE, WE
SEE WHERE WE CAN GO IN A WAY
WHEN WE REACH FOR THE MOON WE
PLANT OUR FLAG ON IT.
THAT'S A GREAT METAPHOR TO HELP
US KICK OFF THE MOONSHOT AND
SORT OF HAS GOTTEN IS THINKING
AT THE NCI.
THAT'S MY REMARKS.
LET ME THANK YOU ALL FOR YOUR
WORK ON BEHALF OF THE NCI.
GOOD TO SEE YOU ALL AGAIN
VIRTUALLY.
I'D BE INTERESTING IN HEARING
COMMENTS OR QUESTIONS.
>> WE CAN TRANSITION TO Q&A.
DO YOU HAVE ANY QUESTIONS,
COUNCIL MEMBERS?
PLEASE RAISE YOUR HAND AND I'LL
CALL ON YOU.
IF NOT, I'LL KICK IT OFF WITH A
QUESTION.
OH, ANNIE.
>> HI.
THANKS, ANGIE.
THANK YOU, DR. SHARPLESS.
IT'S A HIGHLIGHT TO HEAR ALL
THAT YOU HAVE TO SHARE WITH US.
THIS PARTICULAR REPORT WAS
EXTREMELY EXCITING, WITH, YOU
KNOW, THE NEWS OF THE CANCER
MOONSHOTS AND NEW SCIENCE COMING
OUT.
THANK YOU VERY MUCH.
I'M ALWAYS JUST SO MESMERIZED BY
THE CANCER MORTALITY MAPS IN
CERTAIN ZIP CODES AND GROUPS.
AND SO I'M VERY EXCITED ABOUT
THE GOAL TO REDUCE MORTALITY TO
73 PER 100,000 AND WONDERING IF
THERE'S GOING TO BE ANY PLANS OR
STRATEGY FOR EQUITABLE
DISTRIBUTION OF GRANT FUNDING
FOR THOSE ZIP CODES OR
RACE/ETHNICITIES THAT ARE HAVING
PERSISTENT DISPARITIES IN
SURVIVAL, SEEMS LIKE THERE WOULD
BE MORE BANG FOR THE BUCK
FOCUSES ON PEOPLE WHO DID THE
WORTH.
>> I AGREE IT'S A LAUDABLE THING
FOR THE NCI AND NIH TO SUPPORT.
THERE ARE A COUPLE THINGS.
AS YOU KNOW, THERE IS THE IDeA
STATE PROGRAM ACROSS THE NIH
THAT TRIES TO DRIVE NIH FUNDING
TO AREAS OF THE COUNTRY THAT
HAVE LESS -- TRYING TO EVEN IT
OUT THROUGH THAT.
ADDITIONALLY THERE ARE SPECIFIC
PROGRAMS THAT HAVE BEEN MORE
SUCCESSFUL IN TERMS OF GEOGRAPHY
THAN TRADITIONAL R01 FUNDING.
THIS IS AN AREA I THINK THE REAL
QUESTION IS WHAT IS THE RIGHT
BALANCE FOR THE NCI?
WE WANT TO STRONGLY, STRONGLY
ENCOURAGE INVESTIGATOR-INITIATED
RESEARCH.
ONE THING IS THEY GET TO PICK
WHERE THEY LIVE AND DO THEIR
RESEARCH.
WE DON'T THINK THAT WE'RE GOING
TO PUT SPECIFIC PROHIBITIONS ON
THE INVESTIGATOR-INITIATED POOL,
WITH A FEW -- WE DO HAVE AWARDS
FOR CERTAIN POPULATIONS OF
INVESTIGATORS, DIVERSITY, IDeA
STATE PROGRAM, BUT FOR THE MOST
PART A LOT OF RPG POOL IS
INVESTIGATOR INITIATED, AN AREA
WE JUST FUND STRAIGHT BY
PERCENTILE FOR THE MOST PART.
ONE WAY THE NCI CAN BE EFFECTIVE
IN THIS REGARD IS THROUGH
TOPICS.
WE HAVE FUNDING ANNOUNCEMENTS
THAT TRY AND ADDRESS SPECIFIC
POPULATIONS, AND OFTEN THE
PEOPLE WHO WRITE SUCCESSFULLY
FOR THOSE AWARDS ARE PEOPLE WHO
LIVE IN THOSE AREAS AND TAKE
CARE OF THOSE CATCHMENT AREAS OF
THE POPULATION.
EXAMPLE IS SOMETHING LIKE SOME
OF THE DCCPS INITIATIVES, RURAL
POPULATIONS, AREAS OF PERSISTENT
POVERTY, USING TELEHEALTH, WE
HAVE OTHER SPECIFIC FUNDING
ANNOUNCEMENTS THAT TRY AND
ADDRESS SPECIFIC POPULATIONS.
THOSE ARE STRATEGIES WE USED.
LASTLY, MAYBE AN IMPORTANT THING
TO MENTION, WE ARE VERY
INTERESTED IN USE OF CLINICAL
TRIALS ENROLLMENT IN THOSE
POPULATIONS TO MAKE SURE WHAT WE
LEARNED THROUGH CLINICAL TRIALS
IS GENERALIZABLE TO THE ENTIRE
AMERICAN POPULATION REGARDLESS
OF WHERE YOU LIVE.
THAT'S HARD.
I THINK WE TALKED ABOUT THIS IN
THIS GROUP BEFORE.
I THINK THE NCCOR PROGRAM FOR
THE NCI HAS SUCCESSFUL STEP IN
THAT DIRECTION, CERTAINLY
ENROLLED A MUCH MORE INTERESTING
GEOGRAPHICALLY AND IN TERMS OF
RACE AND ETHNICITY, A MORE
INTERESTED POPULATION THAN
USING TERTIARY CARE CENTER
NETWORKS BUT THERE'S MORE WE CAN
DO, AS WE DISCUSSED IN THE PAST.
>> THANK YOU VERY MUCH.
I HOPE THERE'S A WAY TO, YOU
KNOW, REDUCE THE MORTALITY, YOU
KNOW, FOR EVERYBODY.
THANK YOU.
>> YEAH, THE PRESIDENT WAS CLEAR
ON THAT.
YOU KNOW, PROMOTING HEALTH
EQUITY, PATIENTS IN RURAL
REGIONS, PATIENTS THAT ARE
UNDERSERVED FOR A VARIETY OF
REASONS, PATIENTS WHO HAVE
BARRIERS TO ACCESS IN TERMS OF
RACE AND ETHNICITY, THAT'S A
TREMENDOUS FOCUS OF THE WHITE
HOUSE.
>> THAT'S A GREAT POINT.
HOPEFULLY WE CAN INCENTIVIZE THE
WORK THAT WE'RE SEEING IN THOSE
HOT SPOTS.
KRISTEN, A QUESTION?
>> KRISTEN SANTIAGO, LONGEVITY
FOUNDATION.
I HAVE TWO QUICK COMMENTS AND A
QUESTION.
I DID PUT SOMETHING IN THE CHAT
AROUND TERMINOLOGY FOR BIOMARKER
TESTING WHICH WE'VE SHARED IN
THE PAST, BUT I THINK JUST WANT
TO REINFORCE THAT A LOT OF
GROUPS HERE HAVE BEEN SUPPORTIVE
OF USING CONSISTENT TESTING
TERMINOLOGY FOR BIOMARKER
TESTING.
THROWING THAT OUT THERE.
HAPPY TO ANSWER QUESTIONS.
>> KRISTEN, I DON'T UNDERSTAND
THE ISSUE.
WHAT DID I SAY WRONG?
>> YOU DIDN'T SAY ANYTHING
WRONG.
>> ALL RIGHT.
>> IT'S MORE IN THE MOONSHOT
ANNOUNCEMENT, IT REFERS TO
GENETIC TESTING BUT IS BROADER
THAN THAT.
GENETIC VERSUS GENOMIC.
YOU DIDN'T SAY ANYTHING WRONG.
>> YEAH, I DON'T KNOW, THIS IS
REALLY CONFUSING.
THANK YOU FOR THE LINK.
BIOMARKERS IS SO BROAD, SOME
SPECIFICITY IS --
>> YEAH, THAT LINK, A GROUP OF
40 PATIENT ADVOCACY
ORGANIZATIONS AND INDUSTRY AND
TESTING COMPANIES CAME TOGETHER
TO SAY LIKE WE SHOULD TALK WITH
ONE MESSAGE BASICALLY SO THAT
PATIENTS KNOW WHAT TO ASK FOR
AND PROVIDERS IN THE COMMUNITY
SETTINGS CAN HAVE A BETTER WAY
TO COMMUNICATE THINGS.
IT'S A SEPARATE ISSUE.
WE'VE CHATTED WITH AMY BEFORE.
A LOT OF GROUPS ON THIS CALL ARE
INVOLVED IN THAT.
I DON'T WANT TO TAKE UP YOUR
TIME FOR THAT BUT HAPPY TO SET
UP A SEPARATE CALL ESPECIALLY
WITH MY COLLEAGUE NIKKI WHO RAN
THE PROGRAM, MAKING SURE WHEN
WE'RE TALKING ABOUT TYPE OF
TESTING TO GET THEM INTO THE
MOST APPROPRIATE THERAPIES THAT
WE USE THE MOST -- THE EASIEST
LANGUAGE FOR PATIENTS TO
UNDERSTAND IS KIND OF THE GIST
OF IT.
SO I FEEL LIKE MY COMMENT
SOUNDED HARSH.
I DIDN'T MEAN FOR IT TO BE
HARSH.
HAPPY TO HAVE A SIDE
CONVERSATION ABOUT THAT.
I'M CURIOUS ABOUT THE FEDERAL
CERVICAL CANCER COLLABORATIVE
YOU MENTIONED.
AND DO YOU THINK THERE'S VALUE
FOR DOING A LUNG CANCER ONE OR
DOES THAT GET TOO CRAZY TO HAVE
MULTIPLE SIMILAR?
AND LONGEVITY DOES SIMILAR WORK
BUT CURIOUS ON YOUR OPINIONS ON
THAT AND HOW CAN WE HELP IN
GENERAL WITH THAT.
>> YEAH, I THINK, YOU KNOW,
THAT'S AN INTERESTING
SUGGESTION.
CERTAINLY WE HAVE THOUGHT ABOUT
THIS OURSELVES.
WHEN DO THESE TRANSGOVERNMENT
EFFORTS BENEFIT FROM LOTS AND
LOTS OF PEOPLE AT THE TABLE
VERSUS -- WE'VE DONE FAIRLY
FOCUSED THINGS AROUND LUNG
CANCER WITH JUST THE FDA.
SOMETIMES THAT MAY BE A BETTER
APPROACH.
NO ONE HAS EVER ACCUSED A LARGE
GOVERNMENT ROUNDTABLE WITH LOTS
OF ACRONYMS OF BEING NIMBLE.
THERE'S A TRADEOFF BETWEEN, YOU
KNOW, BUT ALSO THE SCOPE IS
QUITE POWERFUL SO WHEN THAT'S
THE RIGHT THING TO DO IS
SOMETHING WE THINK A LOT ABOUT.
YOU KNOW, I THINK WE'RE GOING TO
SEE MORE OF THIS DURING THE
MOONSHOT.
I MENTIONED THE CANCER CABINET
KICKING OFF.
I THINK THERE WILL BE AN
INTEREST, FOR EXAMPLE, IN SOME
PARTS OF THE CANCER CABINET ON
TOPICS LIKE BURN PITS,
ENVIRONMENTAL EXPOSURES IN LUNG
CANCER, SO THAT MIGHT LEAD TO AN
ENVIRONMENTAL EXPOSURE LUNG
CANCER TYPE EFFORT.
I DON'T WANT TO PREDICT WHERE
THE CANCER CABINET IS GOING TO
GO BECAUSE WE HAVEN'T MET BUT IF
YOU THINK ABOUT WHAT ISSUES ARE
A GOOD FIT FOR LARGE PARTS OF
THE FEDERAL GOVERNMENT, YOU
KNOW, THAT'S PROBABLY THE RIGHT
WAY TO THINK ABOUT IT.
THE OTHER THING TO SAY ABOUT
THESE IS I THINK THEY REALLY
WORK WELL WHEN THERE IS A
SPECIFIC NEED THAT UNDERPINS
THEM.
IN THIS PARTICULAR COLLABORATIVE
ONE OF THE THINGS THAT'S REALLY
IMPORTANT IS THE NATIONAL POLICY
AROUND HPV VACCINATION WHERE
HRSA HAS A BIG ROLE, CMS HAS A
BIG ROLE, STATE AND LOCAL
AUTHORITIES HAVE A BIG ROLE.
THAT MAKES THIS COLLABORATIVE
PARTICULARLY USEFUL IN THIS
REGARD.
I'M NOT SAYING THERE AREN'T
ISSUES LIKE THAT AROUND OTHER
MALIGNANCIES.
LUNG CANCER SCREENING, FOR
WOULD LOVE SOME HELP.
BUT I THINK THAT, FOR EXAMPLE,
IS WHY THAT COLLABORATION
(INDISCERNIBLE) CERVICAL CANCER.
>> THAT'S HELPFUL.
>> I DIDN'T HEAR WHAT YOU SAID.
>> I WAS GOING TO SAY HIGHLIGHT
SCREENING AS WELL.
>> YEAH.
WE DEFINITELY ARE THINK ABOUT
LOTS OF WAYS TO INCREASE
SCREENING UPTAKE, WHICH HAS BEEN
DISAPPOINTED.
I DON'T UNDERSTAND WHY.
I WOULD HAVE EXPECTED ACADEMIC
MEDICAL CENTERS AND LARGE
MEDICAL CENTERS TO PICK THIS UP
MORE AND WE'VE BEEN ASKING LOTS
OF QUESTIONS ABOUT ARE THERE
CERTAIN THINGS LIKE SHARED
DECISION MAKING THAT LIMIT THE
UPTAKE.
THAT'S A REALLY IMPORTANT TOPIC
WHERE OTHER PARTS OF GOVERNMENT
COULD BE HELPFUL.
>> BEFORE I CALL ON VICKIE, ONE
THING ON THE COUNCIL OR
COLLABORATIVE.
I THINK THERE MIGHT BE AN
OPPORTUNITY FOR THE MULTI-CANCER
BLOOD TEST, THAT'S GOING TO
IMPACT MULTIPLE CANCERS AND
WE'LL BE TREADING ON NEW GROUND
AND HOW WE'RE GOING TO NAVIGATE
FROM THE SCIENCE, ALSO
IMPLEMENTATION SCIENCE.
I'M NOT SURE WHAT NCI IS
THINKING AS RELATES TO THE
MULTI-CANCER BLOOD TEST BEYOND
THE RESEARCH, BUT HOW IT'S GOING
TO APPROACH THAT AND ARE YOU
WORKING WITH FDA ON HOW THAT'S
GOING TO BE EXECUTED ON?
>> YEAH, IT'S A REALLY
INTERESTING TOPIC.
THE NCI HAS BEEN THINKING ABOUT
THIS A LOT.
WE HAVE KIND OF AN INTERNAL TEAM
LED BY PHIL CASTLE AND OTHERS, I
THINK AT SOME FUTURE DATE I
WOULD LIKE THEM TO GIVE A
PRESENTATION TO THIS GROUP AND
OUR OTHER BOARDS.
WHEN THE TIME IS RIGHT, THIS IS
ONE OF THE THINGS THE PRESIDENT
SPECIFICALLY MENTIONED, THAT'S A
CLUE THE NCI IS GOING TO WORK
OUT.
BUT I THINK WE SHOULD.
IT'S A REAL OPPORTUNITY TO
CHANGE, END CANCER AS WE KNOW
IT, CHANGE THE NATIONAL
EXPERIENCE AND AFFECT THE
NATIONAL POPULATION MORTALITY
STATISTICS, BUT THERE ARE A LOT
OF IMPORTANT SCIENTIFIC ISSUES
AS I MENTIONED, DIAGNOSIS AND
TREATMENT.
I WILL BE SHOCKED, VERY
SURPRISED, IF THIS ISN'T A TOPIC
MUCH GREAT INTEREST AT THE
CANCER CABINET BECAUSE I KNOW
DoD IS INTERESTED IN THIS,
V.A. IS INTERESTED IN THIS.
I THINK CDC IS OBVIOUSLY
INTERESTED IN THIS.
THE FDA IS STUCK WITH REGULATING
THESE TESTS WHICH IS A
COMPLICATE ENDEAVOR, THEY ARE
INTERESTED IN THIS.
THERE ARE A LOT OF PARTS OF
GOVERNMENT THAT HAVE TO THINK
THROUGH THIS, AND I THINK WHAT'S
IN IT FOR NCI, THERE'S RESEARCH
QUESTIONS THAT NEED TO BE
ADDRESSED.
IF WE CAN FIGURE OUT RESEARCH
QUESTIONS THAT WILL HELP WITH
TRIAL DESIGN.
I DON'T THINK THE NCI IS GOING
TO DESIGN ONE OR TWO TRIALS.
I THINK WE'LL HAVE MANY KINDS OF
LARGE CLINICAL TRIALS BUT ALSO
SMALLER GRANTS THAT ARE METHODS
AND TECHNOLOGY DEVELOPMENT.
>> VICKIE?
>> THANK YOU.
IT'S GOOD TO GO TO A MEETING
THAT HAS SO MUCH GOOD NEWS IN
IT, BOTH ON THE APPROPRIATIONS
FRONT AND MOONSHOT.
A THING THAT STRUCK ME ABOUT THE
REINVIGORATED MOONSHOT, HOW
BROAD IT IS IN THE PILLARS AND
IN THE WAY THE CANCER CABINET'S
GOING TO BE SET UP.
MY GENTLEMEN IS -- QUESTION IS
TRYING TO ANTICIPATE HOW
ADVOCATES LIKE US CAN HELP AND
WHETHER THERE'S ANY, YOU KNOW,
ROADMAP THAT LETS US ONBOARD TO
BE IN SUPPORT OF THE WORK THAT'S
BEING DONE.
>> YEAH, NO, THAT'S AN IMPORTANT
QUESTION.
WE STARTED TO THINK ABOUT THAT.
THERE HAVE BEEN LISTENING
SESSION, OSTP INCLUDED MEMBERS
OF THE ADVOCACY, I THINK THERE
WILL BE MORE OF THAT.
I THINK WHAT'S GOING TO HAPPEN
IS THE NEXT COUPLE MONTHS, MAYBE
THE NEXT YEAR, IS GOING TO BE AN
INTENSE PLANNING GROUP.
I THINK THERE ISN'T SPECIFICALLY
A NEW APPROPRIATION FOR MOONSHOT
IN 22 BUDGET, JUST PLANNED
APPROPRIATION AT THE END OF 21ST
CENTURY CURES, THAT WILL PROVIDE
TIME TO THINK WHAT SHOULD WE DO
RIGHT NOW, IMMEDIATELY, THINGS
WE HAVE TO START YESTERDAY
VERSUS WHAT ARE THINGS WE HAVE
THINK THROUGH AND START AS NEW
APPROPRIATION FOR CANCER
RESEARCH IN THE FUTURE.
I SUSPECT THAT BOTH OF THOSE
QUESTIONS ARE AREAS WHERE WE'LL
BE INTERESTED IN HAVING ADVOCACY
WEIGH IN.
THAT WILL BE LOTS OF WAYS,
THROUGH BOARDS LIKE THIS, FACA
COMMITTEES TO TALK TO NCI AND
OTHER PARTS OF GOVERNMENT,
THROUGH RFIS WE'LL ISSUE, SO WE
WILL POINT THOSE OUT WHEN THEY
BECOME RELEVANT, THROUGH
EDUCATIONAL MEETINGS AND OTHER
CONVERSATIONS.
THIS IS AN AREA WHERE, YOU KNOW,
THE VOICE OF ADVOCACY IS VERY
IMPORTANT.
YOU CAN ALREADY SEE THAT THERE'S
THIS FOCUS ON CANCER AT THE
POPULATION LEVEL IN AMERICA.
THAT'S NOT THE ONLY FOCUS.
THERE WILL ALSO BE, YOU KNOW, A
FOCUS ON OTHER ASPECTS OF CANCER
RESEARCH AND CANCER CARE
DELIVERY, AND GETTING THAT
BALANCE RIGHT WILL BE IMPORTANT,
WILL BE REALLY AN AREA WHERE
ADVOCACY CAN BE PARTICULARLY
IMPORTANT.
>> THANK YOU FOR YOUR
PRESENTATION.
AND WE REALLY APPRECIATE YOU
ANSWERING OUR QUESTIONS.
WE LOOK FORWARD TO THIS EVERY
TIME WE HAVE THESE MEETINGS.
I'M GOING TO WELCOME FROM DCCPS
THE DIRECTOR'S UPDATE, DR.
KATRINA GODDARD, DIRECTOR OF
DIVISION OF CANCER CONTROL AND
POPULATION SCIENCES, INVITING
HER TO DELIVER HER UPDATE.
THIS IS HER FIRST PRESENTATION
TO OUR GROUP.
AS A PART OF NCI.
SO WELCOME.
THANK YOU FOR JOINING US.
>> THIS IS ONE OF KATRINA'S
FIRST PRESENTATIONS PERIOD.
>> YES.
>> OH, EXCELLENT.
TO THE RIGHT GROUP.
>> TO THE RIGHT GROUP.
>> THANK YOU.
>> RIGHT.
THANK YOU SO MUCH.
I'M REALLY HAPPY TO BE HERE AND
HAVE THE CHANCE TO SPEAK WITH
YOU ALL TODAY AND GIVE YOU AN
UPDATE ON OUR DIVISION.
NEXT SLIDE.
I WANTED TO START OFF AND JUST
BEGIN WITH AN OVERVIEW OF THE
DIVISION.
NEXT SLIDE.
I'M JUST BEGINNING THE FIFTH
MONTH IN THIS JOB AT NCI.
AND ONE OF THE QUESTIONS THAT
I'VE BEEN GETTING THE MOST IS
WHAT IS CANCER CONTROL?
SO, I JUST WANTED TO START OFF
WITH A LITTLE BIT ABOUT HOW WE
VIEW CANCER CONTROL FROM OUR
DIVISION'S PERSPECTIVE.
SO, IN A NUTSHELL WE THINK OF
CANCER CONTROL AS REDUCING THE
POPULATION BURDEN FROM CANCER.
THERE ARE MANY WAYS THAT WE CAN
REDUCE THIS BURDEN AND WE THINK
OF THIS ALONG THE CANCER CONTROL
CONTINUUM.
SO OUR DIVISION ACTUALLY FOCUSES
ON ALL OF THESE AREAS BEGINNING
WITH UNDERSTANDING THE
UNDERLYING ETIOLOGY AND RISK
FACTORS THAT INCREASE RISK FOR
CANCER.
UNDERSTANDING DIFFERENT WAYS OF
PREVENTION AND HOW WE CAN REDUCE
GETTING CANCER IN THE FIRST
PLACE.
THINKING ABOUT DIFFERENT WAYS TO
DETECT CANCER EARLY, SO THAT WE
ARE ABLE TO INTERVENE SOONER AND
HOPEFULLY HAVE A BETTER OUTCOME
IN TERMS OF DIAGNOSIS, CONCERNS
ABOUT BOTH UNDERDIAGNOSED, AS
WELL AS OVERDIAGNOSIS, BECAUSE
THE BURDEN OF CANCER IS
PERCEIVED IN BOTH WAYS.
IN TERMS OF TREATMENT NOT ONLY
WANTING TO ENSURE THAT WE HAVE
EFFECTIVE TREATMENTS FOR
PATIENTS BUT ALSO TRYING TO
MINIMIZE THE SIDE EFFECTS FROM
THOSE TREATMENTS AND OTHER HARMS
THAT HAPPEN FROM TREATMENT,
INCLUDING SHORT-TERM AS WELL AS
LONG-TERM IMPACTS.
AND THEN IN THE NEXT
PRESENTATION EMILY IS GOING TO
FOCUS ON THE FOCUS IN OUR
DIVISION ON SURVIVORSHIP, SO I'M
NOT GOING TO FOCUS ON THAT IN MY
PRESENTATION BUT THAT'S
CERTAINLY PART OF THE CONTINUUM.
WE ALSO NEED TO THINK ABOUT
CROSS-CUTTING AREAS ACROSS THIS
ENTIRE CONTINUUM, SO
COMMUNICATION, NOT JUST BETWEEN
PROVIDERS, BETWEEN THE PROVIDER
AND THE PATIENT, IN TERMS OF
HEALTH SYSTEMS AND ALSO
COMMUNICATING TO THE PUBLIC.
I THINK THERE'S A LOT OF
DIFFERENT COMMUNICATION ISSUES,
INCLUDING MISINFORMATION, THAT
WE REALLY NEED TO PAY ATTENTION
TO.
CONDUCTING SURVEILLANCE, SO THAT
WE ARE FACING OUR WORK ON STRONG
DATA.
AND PARTICULARLY FOCUSING ON
HEALTH DISPARITIES, I THINK THIS
IS AN AREA OF STRONG INTEREST
FOR MANY PEOPLE.
AND I WON'T GO THROUGH THE AREAS
BUT THERE ARE A LOT OF
CROSS-CUTTING ISSUES THAT WE
FOCUS ON ACROSS THE ENTIRE
CONTINUUM.
NEXT SLIDE.
SO, DCCPS IS DIVIDED INTO SEVEN
PROGRAMS AND OFFICES.
AND THAT'S HOW WE ORGANIZE OUR
WORK.
EACH PROGRAM REALLY FOCUSES ON
DEVELOPING A RESEARCH AGENDA
WITHIN THAT AREA, AS WELL AS
ESTABLISHING PARTNERSHIPS AND
COLLABORATIONS, SO THAT WE'RE
WORKING TOGETHER WITH OTHER
FEDERAL AGENCIES, WITH OTHER
ORGANIZATIONS, AND REALLY
FITTING NCI WITHIN THE ENTIRE
ECOSYSTEM.
WE HAVE A PARTICULAR ROLE OF
CONDUCTING RESEARCH BUT WE WANT
THAT RESEARCH TO INFORM POLICY
TO INFORM GUIDELINES OF
RECOMMENDATIONS AND TO INFORM
HOW CARE IS DELIVERED.
SO JUST TO GIVE A COUPLE
EXAMPLES HERE WE HAVE A REALLY
STRONG BEHAVIORAL RESEARCH
BRANCH, REALLY FOCUSING ON
THINGS LIKE COMMUNICATION,
MISINFORMATION, AS WELL AS
MODIFIABLE RISK FACTORS LIKE
SMOKING, AND DIET, AND EXERCISE,
FOR INSTANCE.
AND THEN SURVEILLANCE, WE HAVE
VERY STRONG PROGRAM.
MANY PEOPLE RECOGNIZE THE SEER
PROGRAM AND CISNET PROGRAM THAT
PROVIDE A FOUNDATION OF DATA TO
HELP US UNDERSTAND WHEN WE'RE
MAKING PROGRESS AGAINST CANCER,
AND AREAS WHERE WE MAY NEED TO
FOCUS OUR ATTENTION AND SUPPORT
RESEARCH IN THOSE AREAS FURTHER.
NEXT SLIDE.
MY TALK TODAY IS ORGANIZED
BROADLY AROUND SEVERAL HOT
TOPICS IN CANCER CONTROL.
AND BEGINNING WITH HEALTH EQUITY
AND HOW DO WE SERVE COMMUNITIES
ACROSS THE UNITED STATES AND
REALLY MAKE SURE THAT
EVIDENCE-BASED CARE IS AVAILABLE
TO ALL AMERICANS.
DATA SCIENCE IS A VERY EXCITING
OPPORTUNITY WITH ARTIFICIAL
INTELLIGENCE, MACHINE LEARNING,
AND DIGITAL SYSTEMS THAT ARE
REALLY ENABLING US TO DO REALLY
NEW THINGS AROUND CANCER
CONTROL.
LIFESTYLE FACTORS ARE INCREDIBLY
IMPORTANT IN TERMS OF THE
CONTRIBUTION TO RISK TO CANCER,
SO THIS IS SOMETHING WE NEED TO
CONTINUE TO FOCUS ON, BIOMARKERS
AND EARLY DETECTION, AS WELL AS
REDUCING OVERDIAGNOSIS AND
OVERTREATMENT.
I WANT TO TALK ABOUT THE IMPACT
OF ENVIRONMENTAL FACTORS
INCLUDING CLIMATE CHANGE, EMILY
WILL FOCUS ON THE SURVIVORSHIP
CARE MODELS, AND IMPROVING
COMMUNICATION.
NEXT SLIDE.
FIRST I WANT TO START OFF WITH
HOW WE THINK ABOUT PARTICIPANT
ENGAGEMENT WITHIN OUR DIVISION.
NEXT SLIDE.
SO WE REALLY VIEW PARTICIPANT
ENGAGEMENT AS SOMETHING THAT
NEEDS TO BE ONGOING, NOT JUST AT
A PARTICULAR POINT IN TIME IN
THE RESEARCH THAT'S HAPPENING.
IT'S BIDIRECTIONAL, SO THERE'S
COMMUNICATION THE PARTICIPANT TO
THE RESEARCH TEAM AND ALSO BEING
REALLY EMBEDDED IN PART OF THE
RESEARCH TEAM AS WELL AS
COMMUNICATION BACK BACK FROM
RESEARCH TO THE COMMUNITIES AND
PARTICIPANTS.
WE WANT TO SEE PARTICIPANTS
BEING AN INTEGRAL PART OF ALL
PHASES OF RESEARCH.
MY BACKGROUND, I WAS TRAINED AS
A BIOSTATISTICIAN, WHICH IS
REALLY A PERSON DOING THE NUMBER
CRUNCHING AND ANALYZING DATA AND
AS A Ph.D. SCIENTIST NOT
REALLY BEING ON THE FRONT LINES
ENGAGED WITH PARTICIPANTS IN THE
WORK THAT WE DO ON THE
DAY-TO-DAY BASIS.
AND SO THIS IS REALLY SOMETHING
THAT HAS EVOLVED FOR ME OVER
TIME AS A RESEARCHER, TO MAKE
SURE I'M HEARING FROM
PARTICIPANTS AND UNDERSTANDING
THEIR PERSPECTIVES AND HOW THAT
IMPACTS THE WORK THAT WE'RE
DOING.
AND SO IT'S REALLY BEEN VERY
EXCITING FOR ME, AND I JUST LOVE
HEARING THE STORIES AND
PERSPECTIVES FROM THE
PARTICIPANTS AS WE'RE GOING
ABOUT OUR RESEARCH STUDIES.
AND REALLY BEING ABLE TO TAKE
THAT PERSPECTIVE INTO
CONSIDERATION.
SO THE NEXT SLIDE.
I'M GOING TO GO THROUGH A FEW
EXAMPLES OF HOW WE HAVE
INCORPORATED PARTICIPANTS INTO
SOME OF THE WORK THAT WE'RE
DOING IN DCCPS.
SO THIS IS AN EXAMPLE FROM 2020
TO 2021.
WE ACTUALLY FUNDED 23 CANCER
SUPPLEMENTS, EXAMPLES OF THE
PROJECTS AND KINDS OF WORK THAT
WERE DONE THROUGH THOSE
SUPPLEMENTS.
SO THE FIRST ONE IS AN ACADEMIC
COMMUNITY PARTNERSHIP, BASIC
SCIENCE RESEARCHERS.
IN ORDER TO ADVANCE RESEARCH
THAT WAS RELATED TO THE
METABOLIC PATHWAY OF HPV-RELATED
CANCERS.
AND THEN THE SECOND PROGRAM,
THEY DEVELOPED A CITIZEN
SCIENTIST BRIGADE.
THAT DID ROTATIONS WITH THEIR
BASIC SCIENCE RESEARCH TEAMS.
IN ANOTHER PROGRAM COLLABORATED
WITH COMMUNITY PARTNER TO TRAIN
IN LOW INCOME LATINX
COMMUNITIES.
AND THE FINAL EXAMPLE IS SERIES
OF DEPARTMENT -- DELIBERATION
EVENTS.
FOR AMERICAN INDIANS AND ALASKA
NATIVES.
THIS IS AN EXAMPLE OF ONE OF THE
CONSORTIA IN DCCPS, IMPACT,
FOCUSING ON IMPROVING MANAGEMENT
OF SYMPTOMS.
WE WANTED TO BE ABLE TO COLLECT
PATIENT-REPORTED OUTCOMES AND
MEASURES IN TERMS OF HOW THEIR
TREATMENT WAS IMPACTING THEM.
AND FIGURING OUT WAYS HOW TO
BETTER INCORPORATE THIS INTO
ROUTINE COLLECTION.
AND SO REALLY EMBEDDING THE
PARTNERS INTO THE RESEARCH
CONSORTIUM HAVING THEM BE PART
OF THE STEERING COMMITTEE,
HAVING THEM BE PART OF THE
MEETINGS AND THE WORKING GROUPS
IN ORDER TO PROVIDE FEEDBACK ON
HOW THESE RESEARCH STUDIES WERE
ACTUALLY IMPLEMENTED.
AND THEN AT THE ANNUAL MEETING,
HAVING A PATIENT-FOCUSED PANEL
THAT WAS MODERATED BY THESE
CONSORTIA REPRESENTATIVES.
SO REALLY EMBEDDING THE PATIENT,
SORRY, THE PARTICIPANTS INTO THE
CONSORTIUM.
NEXT SLIDE.
THIRD EXAMPLE IS FUNDED THROUGH
THE CANCER MOONSHOT.
THIS IS THE PE-CGS NETWORK.
ONE OF THE MEMBERS OF THIS
COMMITTEE IS SERVING AS ONE OF
THE PARTICIPANTS.
I WAS ABLE TO ATTEND A MEETING
LAST FALL.
HAVING THESE INDIVIDUALS AS PART
OF THAT MEETING SHARING THEIR
STORIES AND REALLY HELPING US TO
SHAPE HOW THE RESEARCH IS
CONDUCTED WAS INCREDIBLY
POWERFUL.
IT JUST WAS REALLY AMAZING TO
HEAR FROM MAVE, COLLEGE STUDENT
AND CHILDHOOD CANCER SURVIVOR,
AND MELINDA, SHE AND HER FAMILY
WERE IMPACTED FROM CANCER
DIAGNOSIS, AND LIZ WANTED TO
TRANSFORM HER QUESTIONS ABOUT
HOW CAN I UNDERSTAND WHAT'S
HAPPENING TO ME TO HELP OTHER
PEOPLE TO UNDERSTAND HOW CAN
THEY UNDERSTAND WHAT'S HAPPENING
TO THEM AND BE BETTER INFORMED.
IT WAS JUST REALLY INCREDIBLE
MEETING TO HAVE THESE
PARTICIPANTS AS PART OF THE
CONFERENCE.
NEXT SLIDE.
I WANT TO SPEAK WITH OUR EFFORTS
ON HEALTH DISPARITIES AND HEALTH
EQUITIES.
NEXT SLIDE.
DCCPS APPROACH HAS BEEN DATA
DRIVEN.
I THINK THE EXAMPLE THAT NED
SHOWED OF THE GEOGRAPHICAL
SLIDES AND SHOWING HOW THERE
IS -- THERE ARE DIFFERENCES
ACROSS GEOGRAPHY IN THE UNITED
STATES IS ONE EXAMPLE HOW WE CAN
USE DATA TO REALLY TRY TO HONE
IN ON AREAS WHERE WE NEED TO
FOCUS.
AND SOME OF THE EXAMPLE FOCUS
AREAS OVER THE PAST SEVERAL
YEARS WHERE WE'VE BEEN FOCUSING,
SOMEONE IN OUR OFFICE HAS DONE A
LOT OF WORK ESTABLISHING
RELATIONSHIPS WITH COMMUNITY
ORGANIZATIONS, WITH THE AMERICAN
INDIAN AND ALASKA NATIVE
POPULATIONS, AS WELL AS DOING
TRAINING IN ORDER TO HELP
INDIVIDUALS IN THESE COMMUNITIES
JOIN THE SCIENTIFIC WORKFORCE
AND BE ABLE TO BE SUCCESSFUL IN
WRITING GRANT APPLICATIONS.
LAST FALL WE ALSO HELD A
WORKSHOP ON CANCER EPIDEMIOLOGY
AND HISPANIC POPULATIONS, AND
THIS WAS REALLY AN OPPORTUNITY
FOR OUR STAFF TO HEAR FROM THE
COMMUNITY IN TERMS OF WHAT ARE
THE CHALLENGES THEY ARE
EXPERIENCING, AND DOING RESEARCH
WITH THIS POPULATION, WHAT DO
THEY THINK THE GAPS ARE, WHAT DO
THEY THINK THE PRIORITIES ARE
THAT WE SHOULD BE FOCUSING ON.
AND THIS KIND OF WORKSHOP REALLY
HELPED NCI TO THINK ABOUT HOW WE
WANT TO MOVE FORWARD WITH OUR
PRIORITIES IN THE FUTURE.
SO, WE'RE CURRENTLY WORKING ON
SUMMARIZING THE WORK THAT WAS
PRESENTED AT THAT WORKSHOP.
AS NED MENTIONED WE HAD A RURAL
CANCER CONTROL PROGRAM FOR
SEVERAL YEARS, AND I'LL SHOW AN
EXAMPLE IN A MINUTE OF SOME OF
THE STEPS THAT WE'VE GONE
THROUGH TO PROMOTE THAT AGENDA.
WE'RE EMENDER DATA COLLECTION
FROM SEXUAL AND GENDER MINORITY
POPULATIONS RIGHT NOW.
THIS IS A GAP THAT REALLY MAKES
IT CHALLENGING TO EFFECTIVELY
CONDUCT WORK WITH THESE
POPULATIONS, SO THIS IS A NEED
THAT WE REALLY NEED TO FIGURE
OUT AS A RESEARCH COMMUNITY HOW
WE'RE GOING TO ADDRESS THIS.
FINALLY FOCUSING ON DEVELOPMENT
OF NEW RESEARCH COHORTS THAT
REALLY ARE FOCUSING ON
UNDERSTUDIED POPULATIONS.
IN THE PAST WE'VE HAD LESS
PARTICIPATION FROM CERTAIN
POPULATION GROUPS IN RESEARCH,
AND WE REALLY WANT TO HAVE
FUNDING OPPORTUNITIES THAT HELP
TO ADDRESS THOSE GAPS.
NEXT SLIDE.
SO THIS IS JUST SHOWING
TRAJECTORY OVER THE PAST 20 OR
SO YEARS, AND REALLY A CREDIT TO
MY PREDECESSOR, BOB CROYLE, IN
TERMS OF PRIORITIZING RESEARCH
ON HEALTH DISPARITIES.
AND I THINK THE DIVISION HAS
REALLY MADE AN INCREDIBLE EFFORT
TO FOCUS THE RESEARCH AND THE
RESEARCH COMMUNITY ON QUESTIONS
AROUND HEALTH DISPARITIES, AND
SO AS OF LAST YEAR OUR PORTFOLIO
INCLUDED 76% THAT HAD SOME FOCUS
IN THEIR SPECIFIC AIM ON HEALTH
DISPARITY QUESTIONS, OR
UNDERSTUDIED POPULATIONS, OR
BOTH.
NEXT SLIDE.
AND THIS IS AN EXAMPLE OF HOW
DCCPS REALLY WORKS TO DEVELOP
FOCUS IN ONE OF THESE AREAS.
SO IN TERMS OF RURAL AGENDA, AND
ALSO THINKING ABOUT PERSISTENTLY
POOR COMMUNITIES, WHAT ARE THE
STEPS THAT WE NEED TO GO THROUGH
IN ORDER TO HELP BUILD THE
RESEARCH COMMUNITY THAT COULD
ACTUALLY CONDUCT THE RESEARCH IN
THESE AREAS.
SO ONE OF THE FIRST THINGS THAT
WE START OFF WITH IS TRYING TO
HELP RESEARCHERS TO BUILD
PARTNERSHIPS WITH ORGANIZATIONS
AND COMMUNITIES THAT ARE IN
THOSE AREAS.
THAT'S JUST SOMETHING THAT'S
FOUNDATIONAL AND NECESSARY IN
ORDER TO SUCCESSFULLY CONDUCT
WORK IN THOSE AREAS.
WE ALSO CONVENED MEETINGS LIKE
THE HISPANIC MEETING I MENTIONED
WHERE WE BRING TOGETHER EXPERTS
AND OTHER COMMUNITY SPEAKERS WHO
CAN HELP US TO UNDERSTAND WHAT
THE GAPS ARE AND WHAT RESEARCH
IS NEEDED.
WE MOVED TO SUPPLEMENT
OPPORTUNITIES, MAYBE SMALLER
GRANT OPPORTUNITIES TO HELP
PEOPLE GET STARTED, GET SOME
DATA, GET SOME WORK GOING IN
THAT AREA.
AND THEN FINALLY HAVING RESEARCH
PROJECT OPPORTUNITIES WHICH ARE
MUCH LARGER OPPORTUNITIES BUT
NEED ALL OF THIS INFRASTRUCTURE
IN PLACE IN ORDER TO BE
SUCCESSFUL.
I JUST POSTED IN THE CHAT A FEW
MINUTES AGO A LINK FOR OUR
PERSISTENT POVERTY RFA THAT WAS
JUST POSTED YESTERDAY.
THAT'S REALLY THE CULMINATION OF
SEVERAL YEARS OF WORK.
NEXT SLIDE.
I'LL SPEAK A LITTLE ABOUT THE
CANCER SURVEILLANCE WORK.
NEXT SLIDE.
OVER THE PAST YEAR WE'RE EXCITED
ABOUT THE SEER EXPANSION, AND
THIS HAS BEEN A TREMENDOUS
EFFORT TO INCREASE THE COVERAGE
OF THE SEER PROGRAM FROM ABOUT A
THIRD OF THE U.S. POPULATION TO
NOW COVERING ALMOST HALF OF THE
U.S. POPULATION AS PART OF THIS
PROGRAM.
AND THIS WAS REALLY NECESSARY TO
ALLOW US TO START LOOKING AT
SUBSETS OF CANCER CASES WITHIN
OUR SURVEILLANCE MECHANISMS SO
WE CAN REALLY UNDERSTAND WHAT'S
HAPPENING WITHIN THOSE SUBSETS.
SO THAT MIGHT INCLUDE
HISTOLOGICAL SUBTYPE,
BIOMARKERS, DIFFERENT TREATMENT
CATEGORIES, BUT ALSO INCLUDES
IMPORTANT POPULATION SUBGROUPS.
NEXT SLIDE.
AS OF JUNE OF LAST YEAR, THIS IS
THE MAP OF THE STATES NOW
INCLUDED AS PART OF THE SEER
PROGRAM.
TEXAS AND ILLINOIS WERE TWO OF
THE STATES THAT WERE RECENTLY
ADDED THAT REALLY MADE SOME OF
THE LARGEST DIFFERENCE IN THE
SEER PROGRAM.
NEXT SLIDE.
THIS IS SHOWING HOW THIS
EXPANSION HAS REALLY IMPACTED
REPRESENTATION WITHIN SEER.
SO, ALTHOUGH WE'RE AT NEARLY 50%
OF THE POPULATION OVERALL, THERE
ARE CERTAIN SUBGROUPS WHERE
WE'RE REALLY CAPTURING HIGHER
PERCENTAGE OF THE POPULATION.
FOR INSTANCE HISPANIC FROM 45%
OF CANCER CASES UP TO 69% OF
CANCER CASES ARE NOW CAPTURED IN
THE SEER REGISTRY, SO THAT'S
GOING TO GIVE A MUCH STRONGER
ABILITY TO LOOK AT
SUBPOPULATIONS WITHIN HISPANIC
POPULATION.
NEXT SLIDE.
MODIFIABLE RISK FACTORS, THIS IS
PART OF OUR BEHAVIORAL RESEARCH
BRANCH.
NEXT SLIDE.
SO TOBACCO CESSATION HAS BEEN A
FOCUS OF THE DIVISION FOR MANY
YEARS, AND ONE AREA WHERE WE
REALLY WANT TO FOCUS GOING
FORWARD IS ON ADOLESCENT TOBACCO
CESSATION.
THERE'S BEEN INCREDIBLE SUCCESS
AROUND TOBACCO CESSATION OVERALL
IN THE UNITED STATES.
BUT UNFORTUNATELY, WE'RE STILL
SEEING A PERSISTENT AND
UNACCEPTABLY HIGH USE AMONG
ADOLESCENTS.
THIS IS THE TIME FRAME WHEN MOST
PEOPLE WHO ARE GOING TO SMOKE
WILL ACTUALLY BEGIN SMOKING.
AND SO IT'S REALLY A CRITICAL
TIME FOR INTERVENTIONS.
66% OF ADOLESCENTS WHO CURRENTLY
USE TOBACCO PRODUCTS REPORT
WANTING TO QUIT OR HAVING
ATTEMPTED TO QUIT BUT THOSE
TOBACCO CESSATION PROGRAMS WE'VE
DEVELOPED IN ADULTS DON'T
NECESSARILY TRANSLATE WELL TO
THIS AGE GROUP.
AND SO THIS IS A MAJOR HEALTH
PROBLEM WE WOULD REALLY LIKE TO
FOCUS ATTENTION ON.
NEXT SLIDE.
THIS IS LOOKING AT CURRENT
TOBACCO USE FROM 2020.
SO IN THE PAST 30 DAYS, ALMOST
25% OF HIGH SCHOOL STUDENTS EWES
USED SOME KIND OF TOBACCO
PRODUCT, MOST OF THIS IS THE
ELECTRONIC NICOTINE DELIVERY
SYSTEMS, e-CIGARETTES.
AND SO I THINK IN TERMS OF
ADDRESSING THIS POPULATION WE
ALSO NEED TO THINK ABOUT WHAT
KINDS OF PRODUCTS IN VARIATION
AND KINDS OF PRODUCTS THEY ARE
USING.
WE HAVE MANY PERHAPS ON EXERCISE
AND NUTRITION, THIS IS ONE
EXAMPLE OF A NEW PROGRAM THAT IS
GOING TO BE ANNOUNCED IN APRIL
VERY SOON, THAT WE'RE EXCITED
ABOUT.
AND THIS IS FOCUSING
SPECIFICALLY ON
TREATMENT-RELATED OUTCOMES AND
INTERVENING AT THE POINT IN TIME
EITHER RIGHT BEFORE THE PATIENT
STARTS TREATMENT OR DURING
TREATMENT.
THIS IS NOT A WELL-STUDIED POINT
IN TIME BUT WE THINK THERE'S A
REALLY GOOD OPPORTUNITY IN THIS
TIME FRAME, IF WE ARE ABLE TO
INTERVENE AND MAKE IMPROVEMENTS
IN FITNESS AND DIET TO IMPROVE
TREATMENT OUTCOMES FOR CANCER
SURVIVORS.
SO I THINK WE'RE REALLY EXCITED
TO SEE WHAT HAPPENS WITH THESE
PROJECTS, ONCE THEY ARE
ANNOUNCED, AND BEGIN NEXT MONTH.
NEXT SLIDE.
OF COURSE, THESE BEHAVIORAL RISK
FACTORS OR MODIFIABLE RISK
FACTORS NOT ONLY IMPACT CANCER
BUT THIS IS SOMETHING OF
INTEREST ACROSS MANY IF NOT ALL
OF THE I.C.s AT NIH.
AND SO I JUST WANTED TO INCLUDE
THIS SLIDE TO SAY THAT WE DON'T
WORK IN ISOLATION.
WE DEFINITELY COLLABORATE ACROSS
NIH, AND EVEN HAVE LEADERSHIP
ROLES AS WE THINK ABOUT HOW TO
INTERVENE ON NUTRITION AND
EXERCISE TO IMPROVE OVERALL
HEALTH.
SO THIS IS AN EXAMPLE FUNDED
THROUGH THE COMMON FUND FOR THE
"ALL OF US" RESEARCH PROGRAM,
WHERE DCCPS, SCIENTISTS HAVE HAD
A LEADERSHIP ROLE.
WE'VE DEVELOPED THE AUTOMATED
SELF-ADMINISTERED 24-HOUR
DIETARY ASSESSMENT TOOL, ASA-24,
THAT'S ACTUALLY GOING TO BE
IMPLEMENTED IN THIS PROGRAM.
AND OUR STAFF ARE PROVIDING
LEADERSHIP AND EXPERTISE AS PART
OF THE STUDY CENTERS INVOLVED IN
THIS PROGRAM.
NEXT SLIDE.
NED MENTIONED CANCER SCREENING.
NEXT SLIDE.
SO AS HE SAID, THE PRESIDENT'S
CANCER PANEL JUST RELEASED THEIR
REPORT IN FEBRUARY OF THIS YEAR,
AND WE WERE REALLY GLAD THAT
DCCPS STAFF WERE ABLE TO
CONTRIBUTE AS EXPERTS TO SOME OF
THE MEETINGS THAT WERE CONDUCTED
TO ESTABLISH THIS REPORT.
NEXT SLIGHT.
THERE'S BEEN -- I WANTED TO GO
THROUGH SEVERAL EXAMPLES OF
DCCPS-SUPPORTED SCIENCE.
ACTUALLY HAD AN IMPACT ON
GUIDELINES.
THIS IS AN EXAMPLE IN LUNG
CANCER SCREENING.
IN THE FIRST MANUSCRIPT THIS HAS
CO-AUTHORS FROM STAFF IN OUR
DIVISION AND SHOWED USPSTF
SCREENING REMAINED BELOW HEALTHY
PEOPLE 2020 TARGETS.
IN ANOTHER PROGRAM, FUNDED
THROUGH DCCPS, CISNET, DID A
MODELING STUDY THAT ESTIMATED
THAT SCREENING INDIVIDUALS AGE
50 OR 55 THROUGH AGE 80 WITH 20
PACK YEARS OF SMOKING EXPOSURE
WOULD RESULT IN MORE BENEFIT
THAN IN THE 2013 U.S. PREVENTIVE
SERVICES TASK FORCE
RECOMMENDATIONS.
AND THESE FINDINGS ACTUALLY
INFORMED REVISIONS AND UPDATES
TO THE USPSTF GUIDELINES
PUBLISHED IN 2021.
NEXT SLIDE.
A COHORT STUDY THEN LOOKED AT
THOSE 2021 RECOMMENDATIONS AND
SHOWED THAT IF THEY ARE ADOPTED,
THIS WILL INCREASE THE NUMBER OF
WOMEN, RACIAL AND ETHNIC
MINORITY GROUPS AND INDIVIDUALS
WITH LOWER SES ELIGIBLE FOR LUNG
CANCER SCREENING AND HELP TO
CLOSE THE GAP FOR THOSE GROUPS.
FINALLY LAST FALL THE CISNET
GROUP DID SIMULATION SHOWING
JOINTLY SCREENING AND
IMPLEMENTING TOBACCO CESSATION
INTERVENTIONS AT THE SAME TIME
COULD RESULT IN FEWER LUNG
CANCER DEATHS AND MORE LIFE YEAR
GAINS THAN JUST DOING THE
SCREENING ALONE.
SO I THINK THAT IS YET SOMETHING
STILL TO BE EVALUATED
PROSPECTIVELY GOING FORWARD BUT
I THINK IT GIVES US SOME CLUES
ABOUT POTENTIAL AREAS FOR FUTURE
WORK.
NEXT SLIDE.
ALL RIGHT.
THE ENVIRONMENT AND CANCER, NEXT
SLIDE.
SO, THE ENVIRONMENT HAS
TREMENDOUS IMPACT ON CANCER
RISK.
AND IT'S ESTIMATED THAT 12 TO
29% OF CANCERS ARE ATTRIBUTED TO
ENVIRONMENTAL EXPOSURES, AND
THERE ARE OVER 100 AGENTS KNOWN
TO BE CARCINOGENIC AND OVER 400
PROBABLY OR POSSIBLY
CARCINOGENIC.
ONE THING I'D LIKE TO ADD TO
THIS SLIDE IS OF THE IMPACT OF
CLIMATE CHANGE ON HEALTH AND
JUST FROM A PERSONAL ANECDOTE,
IN 2020 WE REALLY EXPERIENCED
THE IMPACT OF WILDFIRE IN OREGON
WHERE I WAS LIVING, AND IN THE
MIDDLE OF THE PANDEMIC HAVING
OUR FAMILY AND FRIENDS AND
CO-WORKERS EVACUATED FROM THEIR
HOMES AND FEELING LIKE WE'RE
LIVING IN THIS ENVIRONMENT WHERE
THE AIR OUTSIDE OUR HOMES WAS
NOT BREATHABLE, WAS JUST A
REALLY DRAMATIC EXAMPLE FOR ME
OF HOW CLIMATE CHANGE IS REALLY
IMPACTING OUR HEALTH.
AND SO I THINK THAT'S SOMETHING
THAT WE'RE GOING TO NEED TO TAKE
INTO CONSIDERATION FURTHER AS WE
GO FORWARD.
NEXT SLIDE.
THERE ARE A LOT OF CHALLENGES TO
STUDYING THE ENVIRONMENT, AND
FIRST OF ALL JUST MEASURING
EXPOSURES IS INCREDIBLY COMPLEX.
EXPOSURES HAPPEN OVER LONG
PERIODS OF TIME, AND EXPOSURES
COULD EVEN HAPPEN PRENATALLY OR
IN YOUR PARENTS COULD IMPACT
FUTURE GENERATION.
SO JUST TRYING TO FIGURE OUT
WHAT IS THE RIGHT TIMING TO
MEASURE THESE EXPOSURES AND
NEEDING TO WATCH THE CHANGE IN
EXPOSURE OVER TIME, AND CAPTURE
THAT INFORMATION IS REALLY
COMPLICATED.
WE NEED ADVANCED GEOSPATIAL
METHODS, PEOPLE CONTINUE TO MOVE
AROUND A LOT, AND WE NEED TO BE
ABLE TO SEE HOW THOSE DIFFERENT
EXPOSURES GEOSPATIALLY IMPACT
INDIVIDUALS, WE NEED PERSONAL
MONITORING TECHNOLOGIES, SO THAT
WE CAN ACTUALLY SEE WHAT
INDIVIDUALS HAVE BEEN EXPOSED
TO, AND HOW THAT EXPOSURE
CHANGES OVER TIME.
AND THEN WE NEED STUDIES THAT
CAN REALLY MEASURE THESE
EXPOSURES OVER LONG PERIODS OF
TIME.
SO THERE'S A LOT OF CHALLENGES
THAT WE NEED TO OVERCOME IN
TERMS OF HOW WE WOULD GO ABOUT
STUDYING THE ENVIRONMENT.
WE ALSO HAVE SOME OPPORTUNITIES
THOUGH.
ONE IS THE EXPOSOME.
SO REALLY THINKING ABOUT OUR
EXPOSURES, NOT JUST ONE AT A
TIME, BUT IN AGGREGATION,
LOOKING AT HUNDREDS OR THOUSANDS
OF EXPOSURES TOGETHER.
AGAIN, CLIMATE CHANGE, AS I
MENTIONED, ALSO FOCUSING ON
UNDERSTUDIED POPULATIONS.
NEXT SLIDE.
IN TERMS OF THE FUTURE, NEXT
SLIDE, I REALLY WANT TO LET YOU
ALL KNOW THAT WE ARE INTERESTED
IN HEARING PERSPECTIVES FROM
ACROSS THE ENTIRE COMMUNITY, IN
TERMS OF WHAT THE PRIORITIES
SHOULD BE FOR DCCPS.
AND SO WE'VE PUT OUT A REQUEST
FOR INFORMATION, THIS IS STILL
OPEN FOR ANOTHER FEW WEEKS.
AND I REALLY HOPE THAT EVERYONE
ON THIS COMMITTEE WILL TAKE A
FEW MOMENTS TO RESPOND TO THIS
RFI AND TELL US WHAT YOU THINK
OUR PRIORITIES SHOULD BE.
I'LL PUT THE LINK IN THE CHAT
AFTER I FINISH SPEAKING.
OH, SORRY, NEXT SLIDE.
AND I ALSO WOULD LIKE TO POINT
YOU TO OUR OVERVIEW AND
HIGHLIGHTS REPORT.
THE 2021 REPORT IS JUST A REALLY
EXCELLENT SUMMARY OF THE PAST 20
YEARS OF DCCPS AND HOW MUCH THIS
DIVISION AS GROWN AND
ACCOMPLISHED.
WE'RE ALREADY PLANNING FOR OUR
NEXT OVERVIEW AND HIGHLIGHTS
REPORT IN THE FALL, THAT ONE
WILL REALLY HAVE MORE OF A
FORWARD-THINKING VIEW AND WHERE
ARE WE GOING IN THE FUTURE.
SO, I HOPE THAT THESE DOCUMENTS
ARE SOMETHING THAT YOU'LL LOOK
AT, AND CONSIDER IN TERMS OF
YOUR THOUGHTS AND PRIORITIES FOR
THE DIVISION.
NEXT SLIDE WITH THAT I WILL HAND
IT BACK FOR QUESTIONS.
>> THANK YOU FOR JOINING US AND
PRESENTING.
THAT WAS A REALLY HELPFUL
SUMMARY OF A LOT OF WORK YOU'RE
TAKING ON.
I DID HAVE ONE QUICK QUESTION
BEFORE I TURN IT OVER TO OTHERS
ON THE GROUP TO ASK QUESTIONS.
HOW ARE YOU ALIGNING THE WORK
THAT YOU'RE DOING WITH THE
CANCER PROGRAMS THAT ARE
HAPPENING THROUGH CDC OR SORT OF
IN PARTNERSHIP WITH CDC, HOW IS
THAT HAPPENING?
>> YEAH, SO THERE ARE MANY
DIFFERENT LEVELS WITHIN OUR
PROGRAM, WHERE WE CONNECT WITH
OTHER FEDERAL AGENCIES.
SO, I'M SPEAKING DIRECTLY WITH
LEADERSHIP AT CDC, BUT THERE ARE
ALSO STAFF, INDIVIDUAL STAFF
WITHIN OUR DIVISION WHO WORK
CLOSELY WITH THE CDC, WITH THE
FDA, WITH HRSA, WITH WHATEVER
THE PARTNER ORGANIZATIONS ARE
THAT MAKE SENSE, ON SPECIFIC
TOPICS AND SPECIFIC PROGRAMS.
SO, I THINK THAT CONNECTION IS
HAPPENING AT MULTIPLE LEVELS
THROUGHOUT OUR DIVISION.
>> NICOLE?
>>> THANK YOU FOR THE
PRESENTATION, KATRINA.
GREAT TO SEE ALL YOU'RE WORKING
ON, IT'S QUITE A BIT.
I HAD A QUESTION ABOUT SEER.
AND REALLY AM HAPPY TO SEE THAT
IT WENT FROM ONE-THIRD OF THE
COVERAGE TO 50%.
AND I'M CURIOUS BECAUSE OF THE
MAPS EARLIER DR. SHARPLESS
SHOWED, THERE ARE STATES THAT
HAVEN'T SEEN MUCH CHANGE IN
CANCER MORTALITY OR AS MUCH AS
WE WOULD LIKE TO SEE THAT AREN'T
ACTUALLY INCLUDED IN THE SEER
COVERAGE.
IS THERE PLANS TO CONTINUE TO
EXPAND THAT OR ARE THERE
BARRIERS AS TO WHY THOSE AREN'T
INCLUDED YET?
>> YEAH, THAT'S A GREAT
QUESTION.
AND SO IT ACTUALLY CONNECTS TO
THE PRIOR QUESTION IN TERMS OF
RELATIONSHIPS WITH OTHER FEDERAL
AGENCIES.
THERE'S ANOTHER NETWORK THE CDC
FUNDS, AND WE WORK VERY CLOSELY
TOGETHER.
AND SO KIND OF BETWEEN THE TWO
NETWORKS, THERE IS MORE COVERAGE
ACROSS THE ENTIRE UNITED STATES.
AND WE WORK CLOSELY WITH THEM IN
TERMS OF PUTTING OUT REPORTS
THAT USE DATA FROM BOTH NETWORKS
THAT WOULD COME OUT ON AN ANNUAL
BASIS.
SO, I THINK THERE IS MORE
COVERAGE ACROSS THE UNITED
STATES BEYOND SEER THAT IS
INCORPORATED INTO OTHER
OPPORTUNITIES.
>> COULD I ADD TO THAT?
>> YES.
>> ALL PATIENTS IN THE UNITED
STATES ARE ON A REGISTRY, BUT
ABOUT HALF ARE ON CDC
REGISTRIES, THE REST ARE ON
SEER.
WE ACTUALLY WOULD LIKE OTHER
PEOPLE TO BE ON SEER.
BUT THE STATES DON'T ALWAYS
AGREE WITH THAT.
SOME STATES LIKE BEING ON THE
CDC REGISTRY.
AND HAVE DECIDED NOT TO APPLY
FOR SEER FUNDING, FOR EXAMPLE.
AND SO IT'S A MIX OF THAT.
SOME PEOPLE ARE HAPPY WITH THE
REGISTRY THEY GOT.
SOME PEOPLE DON'T WANT TO CHANGE
THAT.
AND OTHER STATES LIKE THE SEER
PROGRAM AND APPLIED.
I DON'T THINK WE CAN AFFORD TO
COVER EVERYBODY IN THE UNITED
STATES EVEN IF WE WANTED TO BUT
IT'S A REASONABLE QUESTION TO
ASK HOW MUCH BIGGER SEER SHOULD
BE THAN IT IS TODAY FOR STATES
THAT STILL WANT TO PARTICIPATE.
>> THANKS, NED.
>> I WAS CURIOUS, FOR OUR GROUP
WE'RE EXCITED TO HAVE OTHER
RESEARCH ADVOCACY GROUPS
PRESENTING TO US, AND HOW THEY
ARE RUNNING OUT THEIR PROGRAMS
BUT HOW CAN RESEARCH ADVOCACY
INDIVIDUALS OR GROUPS OR
ORGANIZATIONS BETTER PARTNER
WITH THE DCCPS?
>> YEAH, I THINK RESEARCHERS
NEED HELP SOMETIMES WITH
IDENTIFYING PARTNERS WITH
ADVOCACY ORGANIZATIONS AND
EMBEDDING THOSE PARTNERS INTO
THEIR RESEARCH PROGRAMS.
AND SO I THINK REACHING OUT TO
LOCAL ORGANIZATIONS THAT ARE
CONDUCTING RESEARCH AND TRYING
TO SPEAK WITH THE RESEARCHERS IN
THOSE AREAS WOULD BE ONE WAY
THAT YOU COULD BE PRO-ACTIVE
FROM THE ADVOCACY SIDE, RATHER
THAN FROM THE RESEARCHER SIDE
REACHING OUT TO YOU.
>> DO YOU -- I'M SORRY.
WAS THERE ANOTHER QUESTION?
I JUST WANT TO MAKE SURE.
I DON'T SEE ANY OTHER QUESTIONS.
I DID ALSO HAVE ONE FINAL -- I
WON'T ASK A HUNDRED QUESTIONS
BECAUSE I COULD ASK YOU A
HUNDRED QUESTIONS BUT YOU HAVE A
LOT ON YOUR PLATE.
I'M SURE THERE'S MORE TO COME.
BUT I'M CURIOUS WHAT -- HOW YOU
SEE THE FUTURE OF HEALTH EQUITY
AND WHAT YOU MIGHT BE DOING
DIFFERENTLY, HOW IT'S GOING
TO -- NOW THAT YOU'VE BEEN HERE
FIVE WHOLE MONTHS WITH NCI ARE
THERE THINGS YOU COULD SHARE AS
FAR AS YOUR VISION HOW YOU PLAN
TO ADDRESS HEALTH EQUITY?
I APPRECIATE YOU INCLUDING THAT
IN YOUR SLIDES BUT ARE THERE
ADDITIONAL THOUGHTS.
>> ONE THING I WOULD LIKE TO SEE
CHANGE IS A CHANGE IN OUR WORK
FORCE.
AND SO I THINK THAT WE REALLY --
UNTIL WE HAVE A CHANGE IN OUR
WORKFORCE AND MORE
REPRESENTATION WITHIN OUR
WORKFORCE, IT'S CHALLENGING FOR
US TO MAKE STRONG INROADS, IN
HEALTH EQUITY AND DIVERSITY.
AND HEALTH DISPARITIES.
SO I THINK THAT'S SOMETHING THAT
IS REALLY IMPORTANT THAT THE
ENTIRE NIH COMMUNITY NEEDS TO
FOCUS ON.
>> I REALLY APPRECIATE YOU
SAYING THAT BECAUSE I KNOW THAT
PROBABLY ALL OF US ON THIS CALL
AGREE THAT WE HEAR THAT FROM THE
COMMUNITY THAT BEING ABLE TO SEE
RESEARCHERS THAT REFLECT YOUR IS
SO IMPORTANT BUILDING TRUST AND
RELATIONSHIP, BUILDING
ENGAGEMENT BY ADVOCATES AND
PATIENTS AND FAMILIES.
THAT'S EXCITING TO HEAR.
WE APPRECIATE YOU JOINING US.
I HOPE YOU COME BACK.
AND SHARE AN UPDATE, MAYBE AFTER
A YEAR.
BUT WE REALLY LOOK FORWARD TO
HEARING MORE.
IF THERE'S MORE WE CAN DO FOR
YOU, PLEASE DO LET US KNOW.
I KNOW EVERYONE ON THE CALL IS
VERY INTERESTED IN THE WORK THAT
YOU'RE DOING.
>> GREAT.
THANK YOU.
>> NEXT WE HAVE THE OFFICE OF
CANCER SURVIVORSHIP, WE HAVE DR.
EMILY TONOREZOS, LOOKING FORWARD
TO HEARING YOUR UPDATE.
>> THANK YOU FOR HAVING ME.
YOU DID A GREAT JOB WITH MY
NAME.
>> THANK YOU!
I WAS NERVOUS ABOUT THAT.
THANK YOU.
>> YOU DID GREAT.
I RUN INTO THAT EVERYWHERE I GO.
I ACTUALLY GREW UP WITH THE LAST
NAME SMITH, I WAS EXCITED TO GET
A LAST NAME THAT IS UNIQUE.
IT'S CERTAINLY UNIQUE.
I ALWAYS ENJOY THE CHALLENGES OF
BEING INTRODUCED.
IT'S REALLY A TREMENDOUS
PLEASURE TO BE HERE AND I CANNOT
TELL YOU HOW GRATEFUL I AM FOR
THE OPPORTUNITY TO SPEAK WITH
YOU GUYS ABOUT THE OFFICE OF
CANCER SURVIVORSHIP.
NEXT SLIDE.
I JUST WANT TO TAKE US BACK FOR
A MOMENT TO 1976, WHEN A
RADIATION ONCOLOGIST WROTE THIS
PAPER, CURE IS NOT ENOUGH.
AND HE WAS WORKING IN PEDIATRIC
CANCER AND HAD BEEN FOR MANY
YEARS AT THIS POINT.
THE PAPER IS A REVIEW OF THE
SUCCESSES UP TO THIS POINT.
BUT I THINK WHAT HE SAID ABOUT
SURVIVORSHIP IS SO IMPORTANT.
HE WROTE, IT IS CLEAR THAT THE
CHILD CURED OF CANCER MUST BE
FOLLOWED FOR LIFE, NOT SO MUCH
BECAUSE LATE RECURRENCE OF
DISEASE IS FEARED AS TO PERMIT
EARLY DETECTION OF THE DELAYED
CONSEQUENCES OF RADIO AND
CHEMOTHERAPY.
TEN YEARS LATER MULLEN WROTE
THIS PAPER IN THE NEW ENGLAND
JOURNAL OF MEDICINE, WHERE HE
SAID THAT DESPITE SUCCESS ON THE
TREATMENT FRONT, WE HAVE DONE
VERY LITTLE IN A CONCERTED AND
WELL-PLANNED FASHION TO
INVESTIGATE AND ADDRESS THE
PROBLEM OF SURVIVORS.
IT IS AS IF WE HAVE INVENTED
SOPHISTICATED TECHNIQUES TO SAVE
PEOPLE FROM DROWNING BUT ONCE
THEY HAVE BEEN PULLED FROM THE
WATER WE LEAVE THEM ON THE DOCK
TO COUGH AND SPUTTER ON THEIR
OWN IN THE BELIEF WE HAVE DONE
ALL WE CAN.
NEXT SLIDE.
IT WAS IN RESPONSE ADVOCATES
LIKE DR. MULLEN AND OTHERS THAT
THE OFFICE OF CANCER
SURVIVORSHIP WAS CREATED IN
1996.
IT WAS IT WAS SAID THE OFFICE
WAS CREATED IN RECOGNITION OF
THE LARGE NUMBER OF INDIVIDUALS
WITH POORLY UNDERSTOOD NEEDS.
NEXT SLIDE PLEASE.
THE MISSION OF THE OFFICE OF
CANCER SURVIVORSHIP IS TO
ENHANCE THE QUALITY AND LENGTH
OF SURVIVAL FOR ALL PERSONS
DIAGNOSED WITH CANCER AND
PREVENT, MINIMIZE, OR MANAGE
ADVERSE EFFECTS OF CANCER AND
ITS TREATMENT.
I WAS INTERESTED WHEN KRISTEN
BROAD UP THE ISSUE OF LANGUAGE.
WE HAVE A CONUNDRUM, NOT
EVERYBODY IDENTIFIES WITH THIS
WORD, SURVIVOR.
AND WE'VE HAD TO MAKE OUR PEACE
WITH IT AND TO USE THE TERM
SURVIVOR IN A RESEARCH SETTING
WITH THE UNDERSTANDING NOT EVERY
PERSON OR FAMILY MEMBER OF A
PERSON WHO HAS BEEN DIAGNOSED
WITH CANCER IDENTIFIES WITH THE
WORD "SURVIVOR."
AND OVER THE LAST YEAR WE CAME
UP WITH THIS NEW FIGURE TO TRY
TO ENCOMPASS SOME OF THE THINGS
THAT CAN BE GOING ON DURING
CANCER SURVIVORSHIP WITH EARLY
STAGE CANCER, SOMEBODY WHO IS
DIAGNOSED WITH ADVANCED OR
METASTATIC CANCER, OR PROGRESSES
TO METASTATIC CANCER, AND
SOMEONE WHO IS DIAGNOSED WITH OR
PROGRESSES TO END STAGE CANCER.
THERE ARE DIFFERENT GOALS OF
CARE FOR PEOPLE AT DIFFERENT
TIMES IN THIS FIGURE, DIFFERENT
PLACES IN THIS FIGURE.
IT'S SOMETHING THAT WE'RE DOING
OUR BEST TO TRY TO UNDERSTAND.
NEXT SLIDE PLEASE.
MY IMMEDIATE PREDECESSOR CALLED
ATTENTION TO THE POPULATION,
MIDDLE POPULATION OF PEOPLE WHO
ARE LIVING WITH ADVANCED OR
METASTATIC CANCER, AND THIS
PAPER FROM ANGELA AND OTHERS
CAME OUT TO ESTIMATE THE NUMBER
OF WOMEN LIVING WITH METASTATIC
BREAST CANCER.
AND WHAT YOU CAN SEE IS FROM THE
YEAR 1990 TO YEAR 2020, THE
NUMBERS HAVE GROWN TREMENDOUSLY.
THIS IS ONE OF THE FEW PLACES
WHERE WE SEE ACTUALLY THE
PREVALENCE OF METASTATIC CANCER,
PREVALENCE OF CANCER INCREASING,
WHEN YOU SPECIFICALLY LOOK AT
THOSE WOMEN WHO ARE LIVING WITH
METASTATIC BREAST CANCER.
I JUST WANT TO POINT BACK TO THE
COMMENTS DR. SHARPLESS MADE
ABOUT JOE BIDEN AND JILL BIDEN'S
WORDS, REGARDENING ENDING CANCER
AS WE KNOW IT.
PART OF DECREASING CANCER
MORTALITY IS INCREASING THE
LENGTH OF TIME THAT PEOPLE LIVE
AFTER A DIAGNOSIS WITH CANCER.
THAT MEANS THIS POPULATION
SPECIFICALLY, BECAUSE THESE ARE
PEOPLE WHO ARE LIVING, AND SO
IT'S VERY IMPORTANT THAT WE
ACKNOWLEDGE THEM, THAT WE COUNT
THEM, AND THAT WE THINK ABOUT
WHAT THEY MIGHT NEED.
NEXT SLIDE PLEASE.
AND SO WITH THAT IN MIND, DEB
MAYER WHO CAME BEFORE ME IN THE
OFFICE OF CANCER SURVIVORSHIP
WORKED TO UPDATE OUR DEFINITION.
THEY ADDED SOME LANGUAGE.
WE'VE ALWAYS SAID THAT AN
INDIVIDUAL IS CONSIDERED A
CANCER SURVIVOR FROM THE
DIAGNOSIS THROUGH THE BALANCE OF
LIFE.
AND THAT'S A DEFINITION THAT
REALLY CAME FROM THE ADVOCACY
COMMUNITY.
OF COURSE, SOME OF YOU ARE
PROBABLY TOO YOUNG TO KNOW THIS
BUT PRIOR TO THAT ACTUALLY
PEOPLE DIAGNOSED WITH CANCER
WERE CALLED CANCER VICTIMS.
WE STILL HEAR THAT WORD, VICTIM,
WITH REGARDS TO SOME OTHER
ILLNESSES BUT THAT WAS HOW
PEOPLE WITH CANCER WERE REFERRED
TO.
ADVOCATES SAID WE DON'T WANT TO
BE CONSIDERED VICTIMS.
WE WANT TO BE CONSIDERED
SURVIVORS.
WHAT DR. MAYER DID WAS SHE
SPECIFICALLY ADDED THIS LANGUAGE
TO SAY SURVIVORS INCLUDE THOSE
WHO ARE LIVING WITH CANCER AND
FREE OF CANCER.
AND THAT SURVIVORS CAN GO
THROUGH PERIODS ON OR OFF
TREATMENT, AND BE EXPECTED TO
NEED TREATMENT AGAIN IN THE
FUTURE, OR NOT.
NEXT SLIDE PLEASE.
I JUST WANTED TO GO OVER SOME OF
THE ACTIVITIES.
I KNOW KATRINA HAS ONLY BEEN
HERE FIVE MONTHS, AND I'VE BEEN
HERE SLIGHTLY LONGER BUT I
WANTED TO HIGHLIGHT THINGS GOING
ON SINCE I CAME TO NCI, AND SOME
OF THE WAYS THAT I THINK THAT
YOU ALL AS ADVOCATES MIGHT HELP
US DO A BETTER JOB OF MEETING
THE NEEDS OF RESEARCHERS AND
INVESTIGATORS IN THIS AREA.
NEXT SLIDE PLEASE.
SO WE HAD A MEETING JUST THIS
FALL.
ACTUALLY IN DECEMBER.
ON PEOPLE WITH CANCER WHO ARE
BEING TREATED IN URGENT AND
EMERGENCY ROOM SETTINGS.
AND I FOUND THIS TOPIC AND THE
MEETING EXTREMELY INTERESTING.
I REALLY THINK THAT THE URGENT
CARE AND EMERGENCY ROOM SETTINGS
HAVE BEEN UNDERSTUDIED WITH
REGARDS TO CANCER SURVIVORS, AND
THEY ARE PARTICULARLY IMPORTANT
FOR PEOPLE WHO LIVE SOME
DISTANCE FROM THE PLACE THEY ARE
BEING TREATED.
OF COURSE, A LOT OF THOSE ARE
PEOPLE WHO LIVE IN RURAL
SETTINGS.
SO WE TALKED TO PEOPLE TREATING
CANCER SURVIVORS IN NEBRASKA, IN
KENTUCKY, AND WHERE THEY ARE
REQUIRED TO PARTNER WITH
COMMUNITY PROVIDERS, COMMUNITY
EMERGENCY ROOMS OR URGENT CARE
CENTERS, BECAUSE IT'S JUST NOT
POSSIBLE FOR THE PERSON TO COME
BACK TO THE CANCER CENTER EVERY
TIME THEY HAVE A MEDICAL NEED.
AND THERE ARE HUGE CHALLENGES OF
COMMUNICATION AND PROVIDING GOOD
CARE TO CANCER SURVIVORS WHO
HAVE TO SEEK CARE IN EMERGENCY
ROOM AND URGENT CARE SETTINGS.
SO THIS IS A FASCINATING TOPIC,
WE JUST HAVE BEGUN TO DIG INTO
IT.
I WOULD LOVE TO TALK ABOUT IT
MORE.
NEXT SLIDE PLEASE.
I ALSO WANTED TO MENTION
SOMETHING THAT WAS REALLY A
HIGHLIGHT FROM DR. COLLINS,
WHICH IS AND WHICH HAS BEEN
EMPHASIZED DURING THE COVID-19
PANDEMIC OF COURSE, WE IS THE
PROBLEM OF MISINFORMATION.
AND THERE IS A TRANS-NIH
MISINFORMATION INITIATIVE THAT
NCI PARTICIPATES IN, AND IT'S
ESPECIALLY RELEVANT I THINK FOR
CANCER SURVIVORS WHO HAD A LOT
OF FEAR AND UNCERTAINTY AROUND
THE COVID PANDEMIC, WHO
DEMONSTRATED THAT THEY DID NOT
WANT TO COME IN FOR THEIR
LONG-TERM FOLLOW-UP
APPOINTMENTS, AND WHO I THINK WE
ARE STILL ONLY BEGINNING TO
UNDERSTAND WHAT THE IMPACT OF
THE COVID-19 PANDEMIC HAS BEEN
ON THIS POPULATION IN
PARTICULAR.
WHEN YOU THINK ABOUT WHAT WE'VE
SEEN SO FAR AND WHAT DR.
SHARPLESS WAS POINTING TO,
THERE'S BEEN SOME EMERGING
EVIDENCE ABOUT A POTENTIAL
IMPACT FOR MISSING CANCER
SCREENINGS BUT WE REALLY DON'T
KNOW WHAT MAY HAVE HAPPENED TO
CANCER SURVIVORS WHO WERE NOT
COMING FOR THEIR NECESSARY
SURVEILLANCE OR LONG-TERM
FOLLOW-UP APPOINTMENTS.
THIS IS AN AREA I'M CONCERNED
ABOUT AND I THINK MISINFORMATION
PLAYED A BIG PART HERE.
THERE WAS A PAPER THAT CAME OUT
IN JCO ABOUT CHILDHOOD CANCER
SURVIVORS WHEREs PAUL NATHAN
LED SOME WORK ON SURVIVORS WHO
LIVE IN THE PROVINCE OF ONTARIO
IN CANADA, AND THEIR RESULTS
SUGGESTED THERE WAS NO
DIFFERENCE IN COVID-RELATED
EMERGENCY ROOM VISITS OR
HOSPITALIZATIONS COMPARED TO THE
GENERAL POPULATION, REASSURING
FOR MANY PEOPLE.
I HOPE WE SEE MORE RESULTS COME
OUT LIKE THAT, THAT WILL
ENCOURAGE SURVIVORS TO GET
NECESSARY CARE AND THAT WE CAN
COMBAT MISINFORMATION IN OTHER
WAYS BUT THIS IS CLEARLY AN AREA
WHERE WE HAVE A LOT OF WORK TO
DO.
NEXT SLIDE PLEASE.
I ALSO WANTED TO JUST -- YOU'VE
PROBABLY HEARD ABOUT THIS
INITIATIVE BEFORE, BRIEFLY
POINTING TO TOBACCO AS ONE OF
THE HEALTH BEHAVIORS IN CANCER
SURVIVORS THAT DEFINITELY NEEDS
MORE ATTENTION AND MORE WORK.
BEHAVIORS ARE MORE COMPLICATED
THAN WE MIGHT HAVE EXPECTED,
UNDERSTANDING HOW TO ENCOURAGE
PEOPLE TO MAKE GOOD CHOICES
AFTER A DIAGNOSIS OF CANCER
REALLY DOES REQUIRE MORE
RESEARCH.
I WANTED TO MENTION SOMETHING
YOU'VE HEARD ABOUT BEFORE, I'M
HAPPY TO TALK MORE ABOUT THE
IDEA.
WE KNOW THERE ARE A LOT OF
CANCER SURVIVORS WHO PARTICIPATE
IN CLINICAL TRIALS INTERESTED IN
PARTICIPATING IN LONG-TERM
FOLLOW-UP AFTER THE TREATMENT
OTHER TRIAL ENDED, IT'S NOT EASY
TO ACCESS THOSE POPULATIONS.
IN 2019 AT THE RECOMMENDATION OF
THE BOARD OF SCIENTIFIC ADVISORS
DCCPS PUT OUT THIS REQUEST FOR
INFORMATION ON -- I'M SORRY,
NCATS, THAT'S MY -- I APOLOGIZE,
IT'S RIGHT THERE ON THE SLIDE.
RECOMMENDED WE START TO LOOK
INTO HOW TO LEVERAGE CLINICAL
TRIALS POPULATIONS, PUT OUT AN
RFI IN 2021, STILL WORKING ON
GOING THROUGH WHAT THE CLINICAL
TRIAL COOPERATIVE GROUPS HAD TO
SAY, INDIVIDUAL INVESTIGATORS
WHO WERE DOING THIS KIND OF
WORK.
BUT I THINK THERE'S CLEARLY AN
INTEREST IN TAKING POPULATIONS
OF PEOPLE WHO HAVE BEEN --
PARTICIPATED IN CLINICAL TRIALS
AND FINDING WAYS TO INCLUDE THEM
IN LONG-TERM FOLLOW-UP FOR
SURVIVORSHIP RESEARCH.
NEXT SLIDE PLEASE.
I ALSO WANTED TO MENTION
FINANCIAL HARDSHIP.
THIS IS AN AREA OF TREMENDOUS
IMPORTANCE FOR CANCER SURVIVORS
AND OF COURSE HAS ALSO BEEN
IMPACTED BY THE COVID PANDEMIC.
LAST YEAR WE HAD SOME
SUPPLEMENTS TO THE CANCER
CENTERS ON FINANCIAL HARDSHIPS,
THERE WERE 11 CANCER CENTERS
SUPPLEMENTED, AND WE'RE HAPPY TO
SEE SOME RESULTS NOT ONLY FROM
THAT RESEARCH BUT IN TERMS OF
SPURRING ADDITIONAL APPLICATIONS
AND ADDITIONAL PROJECTS IN THIS
AREA.
NEXT SLIDE PLEASE.
THERE'S ALSO SOMETHING ON THE
HORIZON WHICH IS A SURVIVOR
SAMPLE FROM THE HEALTH
INFORMATION NATIONAL TREND
SURVEY, THIS IS GOING TO BE
REALLY FASCINATING DATA.
WHAT IS GOING ON RIGHT NOW IS
THAT THERE IS -- THERE ARE
POPULATION OF SURVIVORS WHO WERE
LINKED TO THEIR SEER REGISTRY
DATA, WHO ARE BEING ASKED
QUESTIONS ABOUT THEIR
INFORMATION SEEKING, INTERNET
USE, SOME THINGS ABOUT COVID,
HEALTH BEHAVIORS AND HEALTH CARE
UTILIZATION, THEY ARE ALSO BEING
ASKED QUESTIONS ABOUT SIDE
EFFECTS FROM TREATMENT, RETURN
TO WORK, AND OF COURSE BECAUSE
THEY ARE LINKED TO SEER REGISTRY
DATA WILL HAVE PRIMARY CANCER
SITE HISTOLOGY AND DATE OF
DIAGNOSIS.
WHEN THIS DATA IS AVAILABLE IT
WILL BE UNDER RESTRICTED ACCESS,
SO INVESTIGATORS WILL HAVE TO
SPECIFICALLY APPLY TO BE ABLE TO
USE IT.
IT'S GOING TO I THINK DEEPEN OUR
UNDERSTANDING OF INFORMATION AND
WHERE SURVIVORS ARE GETTING
INFORMATION AND HOW THAT RELATES
TO COVID-19 AND OTHER BEHAVIORS
THEY ARE UNDERTAKING.
I'M REALLY LOOKING FORWARD TO
THIS DATA.
YOU KNOW ABOUT THE CHILDHOOD
CANCER SURVIVOR STAR ACT.
THERE WERE THREE REPORTS THAT I
PARTICIPATED IN THAT WERE FUNDED
THROUGH THE STAR ACT.
FIRST WAS ON TRANSITIONS.
THIS MEANS CHILDREN WHO ARE
TRANSITIONING TO ADULT STYLE OR
ADULT-BASED CARE, SECOND WAS ON
CARE MODELS THAT INCLUDE PRIMARY
CARE PROVIDERS, AND THE THIRD
WAS ON DISPARITIES AND BARRIERS
TO LONG-TERM FOLLOW-UP FOR
CHILDHOOD CANCERS SURVIVORS.
THE THIRD ONE CAME OUT FIRST.
NEXT SLIDE PLEASE.
AND WHAT WE LEARNED FROM THAT
TECHNICAL BRIEF IS THAT THERE
ARE VERY FEW STUDIES ON
ORGANIZATIONAL OR HIGHER LEVEL
BARRIERS THAT MIGHT BE KEEPING
CHILDHOOD CANCER SURVIVORS FROM
PARTICIPATING IN LONG-TERM
FOLLOW-UP.
WHAT THEY DESCRIBE IN THAT
TECHNICAL BRIEF AHRQ A NUMBER OF
STUDIES LOOK AT SURVIVOR
KNOWLEDGE SO DOES THE SURVIVOR
KNOW THAT THEY ARE SUPPOSED TO
BE COMING BACK FOR SURVEILLANCE
TESTING?
AND ALSO PROVIDER KNOWLEDGE, DO
PRIMARY CARE PROVIDERS REALIZE
THAT THEY ARE SUPPOSED TO BE
REFERRING CHILDHOOD CANCER
SURVIVORS FOR SPECIFIC KINDS OF
SERVICES?
THERE ISN'T ANYTHING OUT THERE
THAT'S TRYING TO INTERVENE AT
THE HIGHER LEVELS, MEANING
ORGANIZATIONAL LEVEL OR
COMMUNITY LEVEL OR MAYBE EVEN
THE POLICY LEVEL, SO WE PUT OUT
THIS CALL FOR CANCER CENTER
SUPPLEMENTS ON ORGANIZATIONAL
BARRIERS TO CHILDHOOD CANCER
SURVIVORSHIP CARE AND GOT 30
APPLICATIONS.
WHEN WE TALK ABOUT
ORGANIZATIONAL BARRIERS THAT
MEANS POLICIES AND PROCEDURES,
CULTURE, RESOURCES, TEAMS,
WORKFLOW, SPACE, STAFFING
EXPERTISE, AND HOURS.
FOR EXAMPLE, IF YOU HAVE A
REQUIREMENT THAT YOU CAN'T GET A
MAMMOGRAM AND BREAST MRI ON THE
SAME DAY IT'S AN ORGANIZATIONAL
BARRIER THAT WILL LEAD TO FEWER
SURVIVORS GETTING NECESSARY
SURVEILLANCE TESTING.
IF YOU HAVE -- THAT COULD BE AN
ORGANIZATIONAL POLICY.
THERE COULD BE A CULTURE WHERE
PEDIATRICIANS ARE FOLLOWING
CHILDHOOD CANCER SURVIVORS
THROUGH THE LIFESPAN THAT'S NOT
PROVIDING APPROPRIATE RISK-BASED
CARE FOR SURVIVORS SO THAT COULD
BE A WAY THE CULTURE IS
CONTRIBUTING TO A LACK EVER
FOLLOW-UP FOR CHILDHOOD CANCER
SURVIVORS.
NEXT SLIDE PLEASE.
WE GOT THERE ANYWAY.
I THOUGHT I HAD ANOTHER SLIDE.
WE GOT 30 APPLICATIONS, AWARDED
7, JUST HAD A MEETING WITH
INVESTIGATORS AND I'M LOOKING
FORWARD TO SEEING HOW
SUPPLEMENTS ARE LEVERAGES FOR
BIGGER STUDIES OR INTERVENTIONS
ON ORGANIZATIONAL BARRIERS.
THE OTHER THING WE DID AFTER
THOSE SUPPLEMENTS CAME IN WAS TO
PUT OUT A NOTICE OF SPECIAL
INTEREST, AND IN THE NOTICE OF
SPECIAL INTEREST WE'RE
SPECIFICALLY CALLING OUT
DISPARITIES AFFECTING HEALTH
CARE UTILIZATION AND HEALTH
OUTCOMES, AMONG CHILDHOOD CANCER
SURVIVORS, WE'RE LOOKING FOR
STUDIES TO ADDRESS THE FULL
SPECTRUM OF FACTORS THAT
CONTRIBUTE TO DISPARITIES AND
SURVIVORSHIP CARE, HEALTH CARE
UTILIZATION AND OUTCOMES, THE
TEAM, COMMUNITY, SYSTEM, PAYER,
POLICY.
THIS CAME OUT IN MARCH, THIS
MONTH, OPEN FOR TWO YEARS.
WE'RE STARTING TO GET CALLS FROM
INVESTIGATORS SO I'M EXCITED.
NEXT SLIDE PLEASE.
WE ALSO ARE GROWING AS AN
OFFICE.
WE WELCOMED JUST LAST MONTH DR.
MICHELE MOLLICA, SHE'S BEEN HERE
FOR A NUMBER OF YEARS AS A
PROGRAM DIRECTOR.
I'M REALLY LOOKING FORWARD TO
HOW SHE'S GOING TO EXPAND OUR
REACH AND BRING A WHOLE
DIFFERENT TYPE OF EXPERTISE TO
THE OFFICE.
NEXT SLIDE PLEASE.
WE ALSO ARE WORKING ON SOME NEW
WAYS TO SUPPORT SURVIVORSHIP
INVESTIGATORS, WE'RE EXTENDING
THE REACH OF OUR NEW R01 MEETING
TO HAVE ONGOING FOLLOW-UP WITH
OUR NEWLY FUNDED INVESTIGATORS.
WE ARE REALLY TRYING TO FOCUS ON
BUILDING A CAREER IN
SURVIVORSHIP SCIENCE.
IN THOSE MEETINGS WE'RE HAVING
SHORT TALKS FROM SUCCESSFUL
SURVIVORSHIP INVESTIGATORS THAT
WE'RE GOING TO RECORD IN HOPES
OF BUILDING A LIBRARY OF 15- TO
20-MINUTE TALKS THAT PEOPLE WHO
ARE TRYING TO BUILD A CAREER IN
SURVIVORSHIP RESEARCH COULD GO
TO THIS LIBRARY AND LISTEN TO
SOME TALKS FROM DIFFERENT TIMES
OF INVESTIGATORS ABOUT HOW THEY
HAVE MANAGED TO BUILD SUCCESSFUL
CAREERS IN THIS FIELD.
NEXT SLIDE PLEASE.
WE ALSO HAVE STARTED AN OFFICE
OF CANCER SURVIVORSHIP DIRECTOR
SERIES.
LAST MONTH WE HAD SIMON ROSSER
WHO GAVE A TALK ABOUT SEXUAL AND
GENDER MINORITY PROSTATE CANCER
SURVIVORS.
IF IT'S NOT -- IF RECORDED TALK
IS NOT AVAILABLE YET, IT WILL BE
VERY SOON ON THE OCS WEBSITE.
NEXT SLIDE.
THIS MONTH WE'RE HAVING DR.
SINGH, WHO IS GOING TO SPEAK
ABOUT USING TECHNOLOGY TO
IMPROVE SUPPORTIVE CARE FOR
CANCER SURVIVORS AND FAMILY
CAREGIVERS.
THIS TALK IS IN PARTNERSHIP WITH
THE NATIONAL INSTITUTE FOR
NURSING RESEARCH, IN JANUARY WE
HAD A TALK FROM DR. STEPHEN
KAMANI FROM UTAH WHO SPOKE ABOUT
DISPARITIES AND BARRIERS TO CARE
IN MALAWI IN PARTNERSHIP WITH
CENTER FOR GLOBAL HEALTH.
MOST TALKS ARE IN PARTNERSHIP
WITH ANOTHER GROUP FROM THE NIH
IN ORDER TOP TRY TO HIGHLIGHT
SURVIVORSHIP RESEARCH THAT'S
GOING ON AT OTHER I.C.s OR IN
OTHER PLACES WITHIN THE NCI.
NEXT SLIDE PLEASE.
OKAY.
THE LAST THING I WANT TO DO IS
JUST QUOTE OUR OWN DR. SHARPLESS
ON HOW WE MIGHT END CANCER AS WE
KNOW IT.
HE SAID, WHAT ARE WE WORKING
TOWARD?
IF WE'RE BUILDING A BRIDGE TO
THE FUTURE OF CANCER WHAT'S ON
THE OTHER SIDE OF THAT BRIDGE?
A WORLD WHERE WE WILL HAVE
CHANGED CANCER AS WE KNOW IT.
AND I THINK THAT FUTURE IS
WITHIN OUR REACH.
LET'S FOCUS ON A FUTURE WHERE
ALL PEOPLE WITH CANCER HAVE THE
SUPPORT AND RESOURCES NEEDED TO
NAVIGATE THEIR CARE.
NEXT SLIDE PLEASE.
THANK YOU.
>> EXCELLENT.
EXCELLENT PRESENTATION.
CLEARLY YOU HAVE YOUR HANDS
FULL.
THERE'S QUITE A BIT THAT YOU
COVERED IN A VERY SHORT AMOUNT
OF TIME.
KATRINA AND YOU BOTH HAVE A LOT
TO MANAGE.
SO, THAT WAS A GREAT
PRESENTATION.
WE'RE EXCITED TO HEAR ABOUT THE
WORK THAT YOU'RE DOING IN
SURVIVORSHIP.
I CAN TURN IT TO QUESTIONS, I
CAN KICK IT OFF.
LET ME SEE IF ANYBODY HAS ANY
QUESTIONS FIRST.
I HAVE A QUESTION ABOUT THE
SAMPLE PROJECT YOU HAVE.
IS THAT GROUP THAT YOU'RE
PULLING, THAT SMALL GROUP OF
INDIVIDUALS THAT ARE LINKED WITH
THE SEER DATA, WILL YOU BE ABLE
TO LOOK AT RACE AND ETHNICITY,
DID I CATCH THAT?
>> YES.
>> CORRECTLY?
>> DEFINITELY.
>> IS IT ALSO REPRESENTATIVE OF
I GUESS ALL THE CANCERS THAT --
DID YOU PICK THE SAMPLE LOOKING
AT SORT OF BROADLY WHAT CANCERS
WOULD BE INCLUDED OR WILL
NUTRITION BE INCLUDED IN THAT?
>> THAT SAMPLE, I HAD EXTRA
SLIDES AND NEXT TIME I WILL COME
WITH MY DETAILED SLIDES.
THAT SEER HINTS -- YOU'RE
TALKING ABOUT HEALTH INFORMATION
NATIONAL TREND SURVEY. , A
SUBSAMPLE OF SURVIVORS THROUGH
THE SEER REGISTRIES USING THREE
SEER REGISTRIES WHICH I CAN'T
REMEMBER OFF THE TOP OF MY HEAD
WHAT THE THREE ARE.
THEY ARE REPRESENTATIVE OF
CANCER TYPES, PEOPLE OF
DIFFERENT AGES, AND OF COURSE
DIFFERENT GENDERS.
BUT THEY ARE NOT -- IT'S ONLY
THREE.
IT'S NOT A FULLY REPRESENTATIVE
SAMPLE.
THAT SAID, I THINK WE DO EXPECT
TO GET A LOT OF REALLY GOOD
INFORMATION FROM THAT SURVEY.
I DON'T THINK NUTRITION IS
INCLUDED.
THERE ARE A FEW WAYS WE GATHER
INFORMATION ON NUTRITION. THERE
HAVE BEEN RECENT VERY EXCITING
STUDIES FUNDED IN NUTRITION IN
CANCER SURVIVORS, BUT I DON'T
THINK THAT HINTS SPECIFICALLY
INCLUDES NUTRITION QUESTIONS.
>> NICOLE?
>>> THANK YOU AGAIN FOR THAT
EXCELLENT PRESENTATION.
GOING BACK, YOU COVERED A LOT,
AT THE VERY BEGINNING WHEN YOU
WERE TALKING ABOUT THE
SURVIVORSHIP ACTIVITIES, YOU
WERE MENTIONING THE
CANCER-RELATED EMERGENCY AND
URGENT CARE EFFORT.
>> YES.
>> I'M REALLY EXCITED TO SEE
THAT BECAUSE, AS YOU MENTIONED,
THAT'S AN UNDERSTUDIED AREA.
IT'S SOMETHING I WORK WITH THE
AMERICAN BRAIN TUMOR
ASSOCIATION, IT'S SOMETHING THAT
WE STRUGGLE WITH FOR PATIENTS
THAT ARE NEWLY DIAGNOSED WITH
BRAIN TUMORS BECAUSE A LOT OF
TIMES THEY PRESENT IN THE E.R.
WITH A SEIZURE, AND THAT'S WHERE
THEY FIND OUT THEY HAVE A BRAIN
TUMOR.
AND THEY ARE TOLD THEY HAVE A
BRAIN TUMOR, NEEDS TO COME OUT
IN 48 HOURS, THEY ARE NOT GIVEN
INFORMATION ON HOW THEY SHOULD
GO TO A CENTER THAT HAS
MULTI-DISCIPLINARY AREA.
THIS IS A BIG ISSUE.
IT'S A BIG UNMET NEED IN OUR
AREA.
SO I'M GLAD YOU GUYS ARE DOING
THIS.
>> WOW.
SO, DIAGNOSIS OF CANCER, SO THAT
MEETING SPECIFICALLY IS PEOPLE
WHO HAVE BEEN DIAGNOSED WITH
CANCER WHO END UP IN URGENT CARE
EMERGENCY ROOM SETTINGS.
BUT THE WHOLE ISSUE OF PEOPLE
GETTING THEIR CANCER DIAGNOSIS
IN AN EMERGENCY ROOM IS REALLY
EXTREMELY IMPORTANT.
AND I'M VERY GLAD YOU GUYS ARE
WORKING IN THAT AREA.
I DO ONE OF THE TYPES OF CANCER
I CARE FOR IS SURVIVORS OF
CHILDHOOD BRAIN TUMORS, AND I
DID WORK YEARS AGO WITH STACIA
WAGNER ON A BOOKLET THEY GIVE TO
PEOPLE, FAMILIES WITH NEW
DIAGNOSES, IT HAS A LOT OF THAT
TYPE OF INFORMATION IN THERE.
BUT THAT'S A HUGE CHALLENGE.
AND I DON'T KNOW OFF THE TOP OF
MY HEAD.
THAT'S NOT WHAT THIS MEETING WAS
SPECIFIC TO WAS DIAGNOSIS.
BUT, WOW, YEAH.
>> I THOUGHT IT MIGHT BE OUTSIDE
THE SCOPE BUT SOMETHING -- WE
DON'T KNOW HOW TO GET TO THOSE
PATIENTS AT THE TIME THAT THEY
ARE DIAGNOSED TO GIVE THEM THE
INFORMATION THEY NEED.
AND ANYWAY, I'M GLAD YOU ARE
WORKING ON THAT EVEN IF THIS IS
OUTSIDE THE SCOPE.
IT'S STILL A HIGH UNMET AREA.
>> WELL, I WOULD BE HAPPY TO
MEET WITH YOU SEPARATELY IF YOU
WANT TO TALK ABOUT THAT.
AND THE FIRST THING I WOULD
THINK PROBABLY GOOGLE IS GOING
TO BE YOUR FRIEND.
YOU KNOW, IF THERE'S A WAY TO
PROMOTE CERTAIN THINGS SO THAT
THEY COME UP THAT WAY, BUT I --
YEAH.
THAT'S A PROBLEM.
IT'S A CHALLENGE.
>> I'D BE THERAPY SPEAK TO --
I'D BE HAPPY TO SPEAK TO YOU.
>> WE SEE THE CAME IN
COLORECTAL, ALSO AFTER DIAGNOSIS
THROUGH SURVIVORSHIP WITHIN OUR
EARLY AGE ONSET COMMUNITY WHERE
VALVE BLOCKAGE, MANAGEMENT OF
CARE AFTER, AFTER TREATMENT,
IT'S CHALLENGING.
WE DO SEE A LOT OF UTILIZATION
OF URGENT CARES.
VERY CURIOUS WHAT YOU'LL FIND
WITH THAT.
WITH THOSE STUDIES AS YOU
CONTINUE TO LOOK AT IT.
I WAS GOING TO ASK ABOUT
SURVIVORSHIP POST-COVID, DURING
COVID, WHAT PEOPLE WERE DEALING
WITH DURING COVID.
I DON'T KNOW IF I CAN SAY
POST-COVID.
FOREVER-COVID.
HOW THAT WOULD LIKE.
LOOK, TO CAPTURE GAPS IN CARE
PATIENTS HAD.
WE HEARD THAT FROM PATIENTS THAT
THEY WERE DELAYED IN THEIR
SURVEILLANCE.
SO EVEN THOUGH THEY WERE HIGH
RISK, THEY HAD HIGH RISK OF
REOCCURENCE, SURVEILLANCE WAS
PUSHED BACK DUE TO COVID DELAYS,
AND SORT OF DIFFICULTIES OF
GETTING AN APPOINTMENT.
I'M ALSO JUST CURIOUS ABOUT HOW
YOU PLAN TO APPROACH THAT AND
SORT OF WHAT YOUR VISION IS FOR
THE RESEARCH THAT WILL BE DONE
IN THAT AREA.
>> EXCELLENT QUESTIONS.
AND VERY TIMELY.
OBVIOUSLY IMPORTANT TO US, TO
THE OFFICE AND WORK WE'RE DOING.
THE FIRST THING THAT COMES TO
MIND IS THE WORK THAT KATRINA
MENTIONED ON TELEHEALTH, AND
EXTREMELY APPLICABLE TO CANCER
SURVIVORS, AND WE JUST HEARD
THAT WE THINK THERE WILL BE AT
LEAST SOME FORM OF CONTINUATION
OF SUPPORT FOR TELEHEALTH, FROM
CMS, BUT OBVIOUSLY GET -- MAKING
SURE SURVIVORS HAVE ACCESS TO
THE CARE THEY NEED I THINK IS
THE FIRST HURDLE.
THERE ARE ALSO OBVIOUSLY SOME
BIG GAPS AND CHALLENGES TO WHAT
TELEHEALTH CAN DO FOR US, EVEN
FOR PEOPLE WHO HAVE BEEN
DIAGNOSED WITH CANCER.
AND MAY EVEN HAVE A PROVIDER
ALREADY.
IT'S STILL AN INCOMPLETE
SOLUTION.
I THINK THERE'S STILL -- YOU
KNOW, SOME OF WHAT MAY BE HINTS
WILL HELP WITH THIS, BUT SOME OF
WHAT WE NEED IS INFORMATION.
YOU KNOW, I KNOW FROM MY OWN
PERSONAL EXPERIENCE, MY OWN
CLINIC AND HOSPITAL, WHERE I
WORK, YOU KNOW, WHAT HAS
HAPPENED OVER THE LAST TWO
YEARS, BUT WE REALLY DON'T HAVE
A LOT OF INFORMATION ABOUT WHAT
SURVIVORS HAVE BEEN DOING DURING
THIS TIME, WHERE THEY HAVE BEEN,
WHO IS TAKING CARE OF THEM, WHAT
ARE THEY EXPERIENCING.
YOU KNOW, THINK FROM THE GENERAL
CONSENSUS, THERE'S A LOT OF
ANXIETY AND SURVIVORS FEEL THEY
VULNERABLE, VULNERABLE TO COVID,
AND AS WELL AS TO CANCER-RELATED
ISSUES AND RECURRENCE AND NEW
CANCER.
AND IT IS MY HOPE THAT PAPER, AS
I MENTIONED ON CHILDHOOD CANCER
SURVIVORS, WE'LL START TO SEE
MORE DATA ABOUT -- THAT IS
REASSURING TO SURVIVORS AND THEY
WILL START TO FEEL -- WILL START
TO HAVE MORE EVIDENCE ABOUT WHAT
POPULATIONS ARE UNIQUELY
SUSCEPTIBLE AND WE CAN TRY TO BE
RESURING WHERE THE RISK IS THE
SAME AS THE GENERAL COMMUNITY.
THERE ARE A LOT OF UNKNOWNS.
>> VICKIE?
>> THANK YOU.
EMILY, I JUST HAVE TO SAY, I
REPRESENT THE COALITION AGAINST
CHILDHOOD CANCER, AND WE ARE
GETTING READY TO GET THE STAR
ACT REAUTHORIZED.
AND I HAVE TO SAY THAT THE
INFORMATION THAT YOU GAVE ABOUT
THE SURVIVORSHIP PIECE OF THE
STAR ACT IS AMAZING.
AND OUR COMMUNITY NEEDS TO KNOW
ABOUT THESE THINGS PRIOR TO US
GOING BACK AND ASKING THEM TOED
ADVOCATE FOR REAUTHORIZATION,
I'M THRILLED TO HEAR THERE'S
PROGRESS IN TRANSITION, CARE
MODELS, DISPARITIES.
THIS HAS BEEN THE BEST HALF HOUR
I'VE HAD HEARING FROM YOU IN A
REALLY LONG TIME.
I THINK THAT YOU PROBABLY ALSO
NEED TO TOOT THAT HORN MORE AND
MAKE SURE THAT THAT INFORMATION
IS GETTING OUT TO OUR COMMUNITY
BECAUSE THEY WOULD BE HAPPY TO
HEAR IT.
>> WELL, DO YOU, VICKIE, HAVE
YOU SEEN THE GOVERNMENT
ACCOUNTABILITY OFFICE REPORT ON
THE STAR ACT ACTIVITIES?
THERE IS A REPORT.
THERE'S A LOT ACTUALLY THAT'S
RELEVANT.
GO AHEAD.
>> THERE MAY BE A LOT.
I THINK IT'S NOT BEING
DISSEMINATED.
>> I UNDERSTAND.
>> IN WAYS THAT IT IS ACCESSIBLE
TO THE PEOPLE THAT WE HAVE TO
ASK TO ADVOCATE.
BUT I'M HAPPY TO KNOW ABOUT
THAT.
AND I WOULD LOVE TO HAVE A
FOLLOW-UP WITH EMILY.
>> OKAY.
>> ANNIE?
>> YEAH, THANK YOU FOR THE
WONDERFUL PRESENTATION.
YOU SPOKE TO THE STEERING
COMMITTEE LAST MONTH, WE HAD A
ROUNDTABLE LAST WEEK, ABLE TO
TALK ABOUT SURVIVORSHIP ISSUES.
AND PEOPLE ARE VERY EXCITED
ABOUT THIS.
MY QUESTION IS COMING BECAUSE
ONE OF THE THEMES THAT HAS COME
UP WITH YOU AND DR. SHARPLESS,
DR. GODDARD, END CANCER AS WE
KNOW IT.
DR. GODDARD IN HER PRESENTATION
SPOKE ABOUT THE LANGUAGE OF
SURVIVOR AND, YOU KNOW, PEOPLE
NOT IDENTIFYING WITH THAT, WHICH
I PERSONALLY HAD ISSUES WITH BUT
WON'T GO INTO RIGHT NOW.
WHAT I WANT TO KNOW, WHEN THE
WORDS FIRST CAME OUT, END
CANCER, WHAT DOES THAT MEAN?
DR. SHARPLESS HAD BEAUTIFUL
FIGURES OF DIFFERENT AREAS.
AND ONE THING THAT MIGHT TIE IN
TO THAT SURVIVOR LANGUAGE THING,
YOU KNOW, SEEING A FOCUS ON
PEOPLE WHO ARE LIVING WITH
CANCER WHICH YOU MENTIONED DR.
GODDARD.
THE CONCEPT, EXPANDING BEYOND
CURE TO PREVENTION SPACE AND
OTHER SPACES, MY PERSONAL
FAVORITE, PEOPLE LIVING WITH
CANCER.
THAT AREA.
MY QUESTION, ARE YOU SEEING
ALIGNMENT OR AGREEMENT AMONGST
RESEARCH COMMUNITIES, FUNDERS,
AS WELL AS PATIENT COMMUNITIES?
HOW ARE PEOPLE COMING AT THIS?
WHAT ARE YOU HEARING AMONGST
YOURSELVES?
>> WOW, SO FIRST OF ALL, I WOULD
SAY SURVIVORSHIP IS A VERY
IMPORTANT PART OF ENDING CANCER
AS WE KNOW IT.
THAT'S WHY I LOVE TO USE DR.
SHARPLESS'S QUOTE, AS AN
ILLUSTRATION.
THE GENERAL PERCEPTION IS THAT
HIS PRIORITY IS DIAGNOSIS AND
TREATMENT OF CANCER YET IN THAT
QUOTE HE'S HIGHLIGHTING A BIG
PART OF ENDING CANCER AS WE KNOW
IT IS MAKING SURE PEOPLE LIVE
LONGER AFTER A DIAGNOSIS OF
CANCER, CERTAINLY A BIG PART OF
THAT WORK.
I'VE BEEN IN SURVIVORSHIP FOR A
LONG TIME, ALSO A GENERAL
INTERNIST WORKING AT A CANCER
CENTER.
I'M USED TO PLAYING IN THE FIELD
OF ONCOLOGY EVEN THOUGH I'M NOT
AN ONCOLOGIST AND HAVE NEVER
FELT ANY SENSE OF COMPETITION OR
THAT WE'RE VYING FOR SHARED
RESOURCES.
YOU KNOW, WE ALL DO SHARE A
COMMON GOAL.
AND ACTUALLY ENDING CANCER AS WE
KNOW IT IS A VERY NICE WAY TO
PUT THAT GOAL.
AND I THINK IN SURVIVORSHIP WE
KNOW, NOT I THINK, WE KNOW THAT
EVERY TIME THERE'S AN ADVANCE IN
DETECTION OR TREATMENT, THERE IS
A CORRESPONDING NEED IN THE
SURVIVORSHIP SETTING TO RESPOND
TO THAT ADVANCE.
SO, WE HAVE ADVANCES IN
TREATMENT RELATED TO IMMUNE
CHECKPOINT INHIBITOR THERAPY, WE
HAVE TO RESPOND TO THAT.
SO HOW ARE WE GOING TO MONITOR
PATIENTS IN THE LONG-TERM
FOLLOW-UP SETTING OR WHAT DO WE
SEE WITH LATE TERM EFFECTS, THAT
CARRIES ACROSS THE BOARD AND
THAT'S THE SPIRIT THAT I SEE
HERE AND THAT I'VE ALWAYS
EXPERIENCED HERE.
I HOPE THAT ANSWERS YOUR
QUESTION.
I CAN'T REMEMBER WHAT ELSE WAS
THERE.
I'M SORRY.
I DO GET PASSIONATE ABOUT THIS
ALSO.
>> IT'S NICE TO HEAR YOUR
PASSION.
I HAVE A QUESTION AS RELATES TO
THAT.
HOW DO YOU SEE IT ALIGNING WITH
SOME CLINICAL TRIALS?
ON THE PANEL REVIEWING A PANEL,
THEY SAID, OH, WELL, THIS IS A
GREAT DRUG, WE'RE GOING TO TEST
IT OUT, WE'LL SEE IF IT WORKS
FOR PATIENTS, BUT THEY ARE GOING
TO LIVE ARE GRADE 5 DIARRHEA.
SO HOW DO WE BETTER INFORM WHAT
QUALITY OF LIKE GOOD QUALITY OF
LIFE LOOKS LIKE, NOT JUST BEING
ALIVE BUT WHAT DOES GOOD QUALITY
OF LIFE LOOK LIKE, WITH PAIN AND
DIARRHEA, JOINT PAIN AND BONE
PAIN THAT AFFECT SURVIVORSHIP,
CURIOUS HOW YOUR OFFICE WILL
DEFINE A GOOD QUALITY OF LIFE
FOR A SURVIVOR AND HOW THAT
ALIGNS WITH THE SORT OF R&D TO
FIND DRUGS TO CURE CANCER.
>> HONESTLY, I THINK IT'S THE
SURVIVORS AND ADVOCATES AND
THEIR FAMILY MEMBERS WHO HAVE TO
TELL US THAT.
YOU KNOW, WHAT FEELS LIKE A GOOD
AND MEANINGFUL LIFE TO A PERSON
WHO HAS BEEN DIAGNOSED WITH
CANCER AND THEIR FAMILY?
I SEE MY ROLE AS TRANSLATING OR
ELEVATING OR PROMOTING WHAT WE
ARE HEARING FROM SURVIVORS AND
THEIR FAMILIES.
AND IF SURVIVORS AND THEIR
FAMILIES NEED MORE INFORMATION
TO MAKE THOSE DECISIONS, THEN
THAT'S WHAT WE SHOULD BE FOCUSED
ON.
IF SURVIVORS AND THEIR FAMILIES
WANT, YOU KNOW, MORE DATA THEN
WE CAN DO THAT.
IF THEY WANT BETTER MEASUREMENT
TOOLS, WE CAN DO THAT.
IF IT'S REALLY ABOUT
COMMUNICATION AND FIGURING OUT
HOW TO PROMOTE BETTER METHODS
FOR PROVIDERS AND PATIENTS TO
COMMUNICATE WITH EACH OTHER,
MAYBE MASKS COMING OFF FOR
EVERYONE INVOLVED MIGHT BE PART
OF THAT.
AND HONESTLY, I'M LOOKING
FORWARD TO THAT FROM A CLINICAL
PERSPECTIVE.
CERTAINLY IT MEANS SURVIVORS AND
-- OR THAT PROVIDERS HAVE TO
HAVE CULTURAL UNDERSTANDING OR
AT LEAST SOME WILLINGNESS TO
HEAR FROM SURVIVORS AND THEIR
FAMILIES ABOUT WHAT MIGHT BE
CULTURALLY RELEVANT FOR THEM.
SO I -- BUT I THINK ALL OF THAT
IS, IN MY ROLE, IS ABOUT
LISTENING TO WHAT IS HAPPENING
AND WHAT PEOPLE NEED AND THEN
FINDING WAYS TO PROMOTE RESEARCH
AND SUPPORT INVESTIGATORS WHO
WANT TO DO THAT KIND OF WORK.
>> MY NAME IS YELAK.
MYELOMA PATIENT.
MYELOMA IS CONSIDERED INCURABLE,
SO WE HAVE BEEN STRUGGLING WITH
BALANCING SURVIVING AND
SURVIVORSHIP AND TREATMENT IN
SURVIVORSHIP, SO THANK YOU FOR
THAT INCLUSIVE DEFINITION THAT
YOU SHARED AT THE BEGINNING OF
YOUR PRESENTATION.
AND IN MY OPINION, SURVIVORSHIP
IS ONE OF THE UNMET NEEDS FOR
DISEASES CONSIDERED INCURABLE
BECAUSE PEOPLE'S MINDSET IS
ALWAYS TREATMENT, NOT
NECESSARILY LOOKING
POST-TREATMENT OR INCORPORATING
SURVIVORSHIP INTO THEIR
TREATMENT JOURNEY.
SO THANKS FOR YOUR PRESENTATION.
>> I AGREE.
>> THANK YOU SO MUCH.
I THINK WE COULD KEEP TALKING
ABOUT SURVIVORSHIP.
WE'RE ALL VERY EXCITED ABOUT IT.
I HOPE THAT IF THERE'S AN
OPPORTUNITY FOR US TO SEE OR
HELP INFORM SORT OF WHAT THAT
BAR IS FOR A GOOD QUALITY OF
LIFE FOR SURVIVORS, I KNOW MANY
OF US WOULD BE VERY INTERESTED.
I THINK YEAR BOWING TO HEAR FROM
MANY PEOPLE ON THIS MEETING
AFTERWARDS.
THANK YOU SO MUCH FOR YOUR
PRESENTATION.
NEXT WE HAVE EXCITING NEWS FROM
BUDGET AND LEGISLATIVE FOLKS.
I WANT TO WELCOME MISS HOLLY
GIBBONS, DEPUTY DIRECTOR OF
OFFICE OF GOVERNMENTAL
REGULATIONS AND LOOKING FORWARD
TO THIS PRESENTATION AND UPDATE.
>> THANKS ANJEE AND EVERYONE.
GOOD AFTERNOON.
WE APPRECIATE YOU HAVING US JOIN
YOU.
I'M HOLLY GIBBONS, DEPUTY
DIRECTOR OF NCI OFFICE OF
GOVERNMENT AND CONGRESSIONAL
RELATIONS.
MY COLLEAGUE MAUREEN CLARK
SZEMBORSKI IS ALSO JOINING ME
TODAY.
NEXT SLIDE PLEASE.
TODAY I'LL FOCUS ON LATEST NEWS
FOR THE FY 22 BUDGET AND
APPROPRIATIONS PROCESS, A TIMELY
TOPIC THIS WEEK, TODAY IN
PARTICULAR.
MAUREEN WILL PROVIDE UPDATES ON
SEVERAL LEGISLATIVE ISSUES OF
INTEREST.
AND CAP RECENT BRIEFINGS AND
EVENTS.
NEXT SLIDE PLEASE.
FIRST I WANTED TO START BY
ACKNOWLEDGING DEVASTATING
SITUATION IN UKRAINE AND TALK
BRIEFLY HOW THAT'S REALLY SHAPED
FINAL NEGOTIATIONS FOR FY 22
OMNIBUS PACKAGE OVER THE PAST
FEW DAYS.
WE STARTED TO PREPARE THIS
UPDATE LAST WEEK AND EVEN AS I
WORKED ON IT EARLY THIS PAST
WEEKEND IT LOOKS LIKE CONGRESS
MIGHT PURSUE ANOTHER VERY
SHORT-TERM CONTINUING RESOLUTION
OR C.R. TO PROVIDE AN EXTRA FEW
DAYS TO FINALIZE THE PACKAGE
INTO EARLY NEXT WEEK.
THEN IT LOOKED LIKE THEY
WOULDN'T NEED TO.
THEN UNTIL 11 P.M. LAST NIGHT
WHEN NEWS BROKE THEY WOULD, AND
WE'RE LOOKING AT A SHORT
FOUR-DAY C.R. THAT WOULD LIKELY
BE CONSIDERED TODAY AND LATER
THIS WEEK.
SO WE DID HAVE THE OMNIBUS TEXT
RELEASED EARLY THIS MORNING.
HOUSE VOTES EXPECTED LATER TODAY
ON THE FOUR-DAY C.R. AND
OMNIBUS.
TIMING WAS COMING DOWN TO THE
WIRE ALREADY AND SO THAT
ADDITIONAL FOUR DAYS WAS REALLY
NEEDED FOR FINAL VOTES IN THE
SENATE AND PREPARING THE FINAL
PACKAGE.
TO RECAP SOME EVENTS LEADING TO
TODAY, SOME REFLECT IN
HEADLINES.
CLEARLY THE SITUATION IN UKRAINE
INTENSIFIED LAST WEEKEND AND
INTO THIS WEEK.
INCLUDING ADDITIONAL CIVILIAN
LIVES LOST.
CALLS WITHIN CONGRESS TO
ACCELERATE AID TO UKRAINE ALSO
INTENSIFIED INCLUDING UKRAINIAN
PRESIDENT PARTICIPATING IN A
ZOOM METING WITH MEMBERS OF
CONGRESS FROM BOTH THE HOUSE AND
SENATE ON SATURDAY.
I ALSO WANT TO NOTE HERE THAT MY
SLIDES HAVE PROBABLY BECOME
OUTDATED SINCE I UPDATED THEM
THIS MORNING.
CONGRESS DOES PLAN ON PROVIDING
13 BENT -- $13.6 BILLION IN
AID.
REPORTS ARE JUST KNOSP EMERGING
WITHIN THE LAST HOUR, THE COVID
RESPONSE FUNDING MAY BE STRIPPED
FROM THE OMNIBUS.
I KNOW WE DON'T HAVE TIME TO GET
INTO THE WEEDS BUT THERE HAVE
BEEN SIGNIFICANT HURDLES THIS
AFTERNOON RELATED TO OFFSETS IN
THE BILL THAT WOULD HAVE USED
UNSPENT COVID AID TO STATES FROM
PREVIOUS RELIEF PACKAGES TO HELP
PAY FOR THESE NEW PROVISIONS.
YOU CAN STAY TUNED FOR PRESS
COVERAGE ON THAT SITUATION AS IT
EVOLVED THIS AFTERNOON.
I'M HOPEFUL CONGRESS WILL WORK
THROUGH IT BUT THAT MAY MEAN
ADVANCING COVID RESPONSE FUNDING
SEPARATELY.
AND THOSE ARE SOME HEADLINES
WE'RE SEEING IN THE LAST HALF
HOUR OR SO.
IF YOU WANT TO FOLLOW IN REAL
TIME, VARIOUS CONGRESSIONAL
REPORTERS ARE TWEETING UPDATES
FROM THE CAPITOL.
I WON'T GO INTO DETAIL HERE BUT
DID WANT TO MENTION CONGRESS IS
WORKING TO ADVANCE ADDITIONAL
SANCTIONS AGAINST RUSSIA AND
PRESIDENT BIDEN ALSO ANNOUNCED A
BAN ON RUSSIAN ENERGY IMPORTS
THIS WEEK SO THAT'S THE BACKDROP
AND FORCES AT PLAY IN MOVING THE
FINAL PACKAGE TO PASSAGE,
HOPEFULLY WITHIN THE NEXT FEW
DAYS.
NEXT SLIDE PLEASE.
I'LL FOLLOW UP ON SOME KEY
UPDATES DR. SHARPLESS SHARED
EARLIER.
WHAT DOES THIS MEAN FOR NCI AND
NIH?
WE DID LEARN OF THE FINAL
PROPOSAL LEVELS, THE BILL
INCLUDES $45 BILLION FOR NIH,
INCREASE OF $2.25 BILLION, IT
WOULD PROVIDE APPROXIMATELY
$6.9 BILLION, AND ARPA-H WITHIN
HHS, GIVES HHS SECRETARY
AUTHORITY TO TRANSFER TO ANY
PART OF THE AGENCY INCLUDING NIH
WITHIN 30 DAYS OF ENACTMENT OF
THE OMNIBUS.
THIS TABLE IS SOMETHING I REFER
TO REGULARLY, A REFERENCE FOR
THE GROUP, HOPE IT'S HELPFUL.
IT PROVIDES RECAP OF THE
PRESIDENT'S REQUEST, INITIAL
HOUSE PACKAGE, SENATE DRAFT, NOW
WHAT WE'RE SEEING IN THE
OMNIBUS.
I'LL ALSO MENTION THE OMNIBUS
INCLUDES POLICY PROVISIONS OF
INTEREST TO THE CANCER RESEARCH
COMMUNITY, MAUREEN WILL TALK
MORE ABOUT TEMPORARY EXTENSIONS
OF TELEHEALTH FLEXIBILITY, AND I
WANT TO NOTE THE BILL AIMS TO
PROVIDE THE FOOD AND DRUG
ADMINISTRATION WITH AUTHORITY TO
REGULATE SYNTHETIC NICOTINE THAT
IS NOT DERIVED DIRECTLY FROM
TOBACCO PLANTS.
A GRAY AREA AND HAS CREATED
REGULATORY CHALLENGES,
PARTICULARLY REGARDING FLAVORED
E-CIGARETTE PRODUCTS THAT
CONTAIN SYNTHETIC NICOTINE AND
SO THESE PROVISIONS AIM TO
PROVIDE CLARITY AROUND THE FDA'S
AUTHORITY HERE.
NEXT SLIDE.
I ALSO LIKE TO SHARE
CONGRESSIONAL CALENDAR AS A
POINT OF REFERENCE.
FLAGGED HERE WITH THE DIAMONDS
YOU SEE THE CURRENT C.R. EXPIRES
FRIDAY, NEW FOUR-DAY C.R. IF
ENACTED IS EXPECTED TO BE VOTED
ON IN THE HOUSE TODAY, THAT
WOULD EXPIRE NEXT TUESDAY, MARCH
15.
JUST SCANNING SOME OF THE
COMMENTS AND HEADLINES OVER THE
PAST FEW HOURS, LAST NIGHT
BEFORE THE OFFICIAL NEWS BROKE
THAT A CR WOULD BE NEEDED
MAJORITY LEADER HOYER TOLD
REPORTERS WE MIGHT HAVE TO DO A
C.R. FOR THE PURPOSES OF GETTING
THE BILL SIGNED.
RANKING MEMBER OF THE SENATE
APPROPRIATIONS COMMITTEE SENATOR
SHELBY OF ALABAMA ALSO
ACKNOWLEDGED IF THE FRIDAY
DEADLINE WOULDN'T BE FEASIBLE
THAT WILL TIDE US OVER,
REASSURING IN THE MIDST OF NEW
DEVELOPMENTS, HOUSE
APPROPRIATIONS, DELAURA, THAT
WE'RE GOING TO PASS AN OMNIBUS
TODAY.
FINGERS CROSSED WE MAKE IT
THROUGH THE NEXT WEEK WITHOUT A
GOVERNMENT SHUTDOWN AND ASSUMING
THAT HAPPENS I WANT TO LOOK
AHEAD AND NOTE HERE THAT IN THE
SENATE JUDICIARY COMMITTEE
HEARINGS FOR SUPREME COURT
NOMINEE FOR JUDGE BROWN ARE ON
THE 21st, AFFECTING THE REST
OF THE SENATE CALENDAR OVER THE
NEXT MONTH OR TWO.
SHE WAS CONFIRMED TO SERVE IN
HER CURRENT SEAT ON THE U.S.
COURT OF APPEALS IN THE D.C.
CIRCUIT LESS THAN A YEAR AGO,
53-44 WITH REPUBLICAN SENATOR
SUSAN COLLINS, LINDSEY GRAHAM
AND LISA MURKOWSKI VOTING IN
FAVOR.
IF CONFIRMED SHE WOULD BE THE
FIRST BLACK WOMAN TO SERVE ON
THE SUPREME COURT.
NEXT SLIDE PLEASE.
WE'RE ALSO EXPECTING THE RELEASE
OF THE PRESIDENT'S FY23 BUDGET
PROPOSAL IN THE COMING WEEKS
WHICH WILL KICK OFF THE FY23
APPROPRIATION CYCLE, WITH OFFICE
OF MANAGEMENT AND BUDGET, HHS,
NIH CONGRESSIONAL HEARINGS
EXPECTED OVER THE NEXT FEW
MONTHS.
NOT MUCH DOWN TIME FOR
APPROPRIATORS AND THEIR STAFF IN
BETWEEN FINALIZING FY 22 AND
THEN LAUNCHING INTO FY23
DELIBERATIONS AND HEARINGS
LIKELY WEEKS LATER.
NEXT SLIDE PLEASE.
BEFORE I HAND OVER TO MAUREEN I
DID WANT TO QUICKLY HIGHLIGHT,
NEXT SLIDE, THERE ARE SEVERAL
RETIREMENTS COMING UP AHEAD OF
THE MIDTERM ELECTIONS.
HOUSE PRESS GALLERY KEEPS A
LIST, THE CASUALTY LIST, ON ITS
WEBSITE.
I'LL MENTION A HANDFUL HERE THAT
HOLD NOTABLE LEADERSHIP
POSITIONS.
SENATOR BURR, SENATOR LEAHY AND
SHELBY, AND RANKING MEMBER OF
THE LABOR HHS APPROPRIATIONS
SUBCOMMITTEE, SENATOR BLUNT.
IN THE HOUSE SPEAR AND
BUTTERFIELD SERVE AS DEMOCRATIC
CO-CHAIRS OF THE CHILDHOOD
CANCER CAUCUS, REPRESENTATIVE
SPEAR ALSO CO-CHAIRS BIOMEDICAL
CAUCUS, BUTTERFIELD THE RARE
DISEASE CAUCUS.
HE SERVES ON THE ENERGY AND
COMMERCE COMMITTEE.
DAVID PRICE FROM NORTH CAROLINA,
SENIOR APPROPRIATOR AS WELL AS
REPRESENTATIVE LUCILLE ALLARD,
REPRESENTATIVE BRADY RANKING MEN
-- MEMBER ON WAYS AND MEANS AND
KINZINGER.
WE EXPECT TO SEE MANY NEW
MEMBERS BUT ALSO SEVERAL NEW
LEADERS AND MEMBERS OF OUR
COMMITTEES OF JURISDICTION.
NEXT SLIDE PLEASE.
I'LL HAND OVER TO MAUREEN.
>> THANK YOU.
IT'S A HOLLY MENTIONED, WE WOULD
LIKE TO WALK YOU THROUGH SOME OF
THE AUTHORIZING LEGISLATION
WE'RE TRACKING.
AS YOU MIGHT SUSPECT, FOCUS HAS
BEEN ON APPROPRIATIONS, WE
HAVEN'T SEEN RECENT MOVEMENT BUT
WE EXPECT SOME WILL MAKE IT TO
THE PRESIDENT'S DESK BY THE END
OF THIS SESSION OF CONGRESS AT
THE END OF THE CALENDAR YEAR.
FIRST YOU MIGHT HAVE SEEN THAT
THIS DOES CONTAIN EXTENSION OF
MEDICARE TELEHEALTH
FLEXIBILITIES FOR A PERIOD OF
TIME AFTER THE EXPIRATION OF THE
COVID-19 PUBLIC HEALTH ENERGY.
IT ALSO DOES NOT MAKE THESE
TELEHEALTH FLEXIBILITIES
PERMANENT.
CONGRESS WOULD NEED TO ACT.
SOME OF THE LEGISLATIVE
PROPOSALS ARE LISTED HERE.
ONE THAT SEEMS TO BE GETTING
QUITE A BIT OF TRACTION IS
CONNECT FOR HEALTH ACT THAT HAS
A NUMBER OF BIPARTISAN
CO-SPONSORS IN THE HOUSE AND
SENATE.
NEXT SLIDE PLEASE.
ANOTHER POTENTIAL VEHICLE TO
MOVE TELEHEALTH IS CURES 2.0
ACT, AS YOU MIGHT GUESS FROM THE
NAME A FOLLOW-ON TO 21ST CENTURY
CURES ACT, SIMILAR TO THAT BILL
THIS EFFORT IS BEING SPEARHEADED
BY REPRESENTATIVES DEGETTE, FROM
COLORADO, AND UPTON FROM
MICHIGAN.
IN ADDITION TO MAKING SOME OF
THE TELEHEALTH FLEXIBILITIES
PERMANENT, THE BILL AIMS TO
ADDRESS CLINICAL TRIALS
DIVERSITY DOVETAILING WITH
SEVERAL NCI EFFORTS IN THIS
AREA, AS WELL AS AUTHORIZE
APPROPRIATIONS FOR DIFFERENT NIH
RESEARCH EFFORTS INCLUDING LONG
COVID AND ANTIBIOTIC RESISTANCE.
THIS BILL CONTAINS AUTHORIZING
LEGISLATION THAT WOULD LEAD TO
THE ESTABLISHMENT OF ARPA-H, AS
HOLLY MENTIONED, WE HAVE AN
APPROPRIATION FOR ARPA-H IN THIS
OMNIBUS BUT IT DOES NEED TO BE
AUTHORIZED FOR IT TO HAPPEN.
REPRESENTATIVES DEGETTE AND
UPTON PROPOSED HOUSING THE NEW
AGENCY WITHIN NIH, BUT IF WE GO
TO THE NEXT SLIDE YOU MIGHT BE
AWARE THAT REPRESENTATIVE ESHOO,
NEXT SLIDE PLEASE,
REPRESENTATIVE ANNA ESHOO, WHO
IS THE CHAIR OF THE HEALTH
SUBCOMMITTEE OF THE HOUSE ENERGY
AND COMMERCE COMMITTEE, HAD
PREVIOUSLY INTRODUCED A
STANDALONE BILL THAT WOULD
CREATE ARPA-H WITHIN HHS.
THERE SEEMS TO BE A LOT OF WORK
BEHIND THE SCREENS BETWEEN
REPRESENTATIVES ESHOO, DEGETTE,
AND UPTON TO COME TO AGREEMENT
ON WHERE ARPA-H WILL EVENTUALLY
SIT.
REPRESENTATIVE DEGETTE AND UPTON
INDICATED THEY ARE SUPPORTIVE OF
HOUSING OUTSIDE OF NIH,
ELSEWHERE WITHIN HHS, BUT WILL
HAVE TO SEE WHERE IT ENDS UP.
THIS WAS PART OF THE
CONVERSATION AT A HEARING HELD
ON FEBRUARY 8, MEMBERS ON BOTH
SIDES OF THE AISLE WERE
SUPPORTIVE OF THE NEW AGENCY BUT
THEY DID EMPHASIZE THEY WANTED
IT TO HAVE A DIFFERENT CULTURE
THAN NIH.
NEXT SLIDE PLEASE.
WE WANTED TO TOUCH ON A PRIORITY
THAT'S BEEN EXPRESSED BY BOTH
REPUBLICAN AND DEMOCRATIC
LEADERS IN THE HOUSE AND SENATE,
WHICH IS TO MAINTAIN AND ENHANCE
AMERICA'S ABILITY TO SERVE AS
LEADER IN RESEARCH INNOVATION ON
THE GLOBAL STAGE.
SO IN RESPONSE THE SENATE PASSED
THE U.S. INNOVATION AND
COMPETITION ACT LAST JUNE, HOUSE
FOLLOWED IN FEBRUARY WITH THEIR
VERSION, AMERICA COMPETES ACT.
I DON'T KNOW HOW YOU CAN READ
THIS BUT THE BILLS ARE VERY
DIFFERENT FROM ONE ANOTHER.
SO THE MEMBERS WHO SERVE ON THE
CONFERENCE COMMITTEE MADE OF
MEMBERS OF THE HOUSE AND SENATE
REALLY HAVE THEIR WORK CUT OUT
FOR THEM TO COME UP WITH A
CONFERENCE PACKAGE THAT HITS ON
PRIORITIES OF BOTH OF THE
CHAMBERS.
AND I DID WANT TO MENTION
AMERICA COMPETES DOES CONTAIN
REAUTHORIZATION FOR SBIR AND
STTR PROGRAMS WHICH ARE SET TO
EXPIRE AT THE END OF THIS FISCAL
YEAR WITHOUT REAUTHORIZATION.
NEXT SLIDE PLEASE.
WE WANTED TO MAKE SURE YOU ARE
AWARE OF THE PREVENT PANDEMICS
ACT, ALTHOUGH THE NIH PROVISIONS
ARE EXPECTED AT OTHER
INSTITUTES, THE BILL ALSO WOULD
REQUIRE FOR THE FIRST TIME
SENATE CONFIRMATION OF THE CDC
DIRECTOR WHICH WOULD BE A NEW
STEP IN THAT CONFIRMATION
PROCESS.
NEXT SLIDE PLEASE.
AND FINALLY WE WANTED TO MENTION
AMIDST EVERYTHING THAT'S GOING
ON IN CONGRESS, WE HAVE HAD THE
OPPORTUNITY TO SHARE THE GREAT
WORK THAT'S GOING ON AT NCI AT
THREE VIRTUAL EVENTS, CONGRESS
IS MORE COMFORTABLE WITH ZOOM.
STAFFERS WERE WELCOMED FROM
APPROPRIATIONS COMMITTEES TO NCI
FREDERICK IN NOVEMBER.
DR. VIK PRESENTED AT A WORKSHOP,
DR. JACK SHERN PRESENTED AT A
BRIEFING, AND DR. SHARPLESS
PARTICIPATED IN A ROUNDTABLE
DISCUSSION WITH MEMBERS OF THE
HOUSE CANCER CAUCUS.
WE'RE HAPPY TO ANSWER ANY
QUESTIONS THAT YOU HAVE.
SORRY TO HAVE RUN A LITTLE BIT
OVER WITH OUR TIME BUT WE REALLY
APPRECIATE THE INVITATION TO BE
WITH YOU THIS AFTERNOON.
>> THANK YOU FOR THE GREAT
UPDATE.
THINGS ARE CHANGING LITERALLY
HOUR BY HOUR.
THANK YOU FOR JOINING US.
DOES ANYONE HAVE ANY QUESTIONS?
I THINK YOU GUYS DID A GREAT
JOB, YOU COVERED EVERYTHING.
WE'RE ALL LOOKING FORWARD TO
HEARING UPDATES ON THIS.
THANK YOU FOR JOINING US.
>> THANK YOU.
FEEL FREE TO REACH OUT.
OUR E-MAILS ARE IN OUR SLIDES.
I QUICKLY WANTED TO FOLLOW UP ON
VICKIE'S EARLIER QUESTION,
VICKIE, OUR TEAM AND I KNOW
AMY'S TEAM ARE HAPPY TO SET UP A
FOLLOW-UP CONVERSATION TO TALK
MORE ABOUT THE STAR ACT
IMPLEMENTATION EFFORTS.
I DON'T WANT TO VOLUNTEER EMILY.
BUT IF GROUPS WOULD BE
INTERESTED IN HAVING SOME SORT
OF BRIEFING FOR CONGRESSIONAL
STAFF OUR COLLEAGUES WOULD BE
HAPPY TO PARTICIPATE.
KEEP US POSTED.
>> PERFECT.
WE WILL FOLLOW UP OFFLINE TO
MAKE THAT HAPPEN.
>> EXCELLENT.
THANK YOU FOR JOINING US.
WE HAVE A BREAK.
WE HAVE TIME FOR A 10-MINUTE
BREAK.
IF EVERYONE COULD REJOIN THE
ZOOM AT 2:45 EASTERN TIME, 1:45
CENTRAL, THAT WOULD BE GREAT.
>>IN SEPTEMBER NCRA TALKED ABOUT
JUST HOW EXCEPTIONAL OUR
RESEARCH ADVOCACY PROGRAMS WERE
AND THAT WE HAD WORKED WITH
COLLEAGUES WITH RESEARCH
ADVOCACY.
I'M DELIGHTED WE COULD
HIGHLIGHTING EXCELLENT PROGRAMS.
WE HAVE THREE WONDERFUL GROUPS
JOINING US TO SHARE THEIR
EFFORTS IN TRAINING RESEARCH
ADVOCATES, ADDRESSING
SUSTAINABILITY, EVOLUTION OF
PROGRAMS, LESSONS LEARNED, AND
SO I'M REALLY EXCITED TO
INTRODUCE OUR SPEAKERS, SARAH
MILBERG, NANCY LENFESTEY, BRIAN
HOHMAN, AND MICHELE TREGEAR,
NATIONAL BREAST CANCER
COALITION.
FIRST UP WE HAVE SAINT BALDRICK.
>> WE'RE SO THRILLED TO BE
INCLUDED IN THIS, TO BE WELCOMED
AND AMONG SUCH GREAT COLLEAGUES
TALKING ABOUT RESEARCH ADVOCACY.
WE'RE HERE TO TALK ABOUT
CREATING ADVOCATES THROUGH
RESEARCH EDUCATION, CARE
TRAINING PROGRAM.
NEXT SLIDE.
THE FOUNDATION IS THE LARGEST
NON-GOVERNMENT FUNDER OF
CHILDHOOD CANCER RESEARCH
GRANTS, FIRST EVENT IN ONE, WE
HAVE RAISED OVER $300 MILLION
FOR CHILDHOOD CANCER RESEARCH
GRANTS AND COUNTING.
A LOT OF HOW DOLLARS COME TO BE
IS THROUGH HEAD SHAVING, MARCH
IS OUR BIGGEST MONTH, IT GOES
WELL WITH THE FOUNDING ON ST.
PATRICK'S DAY.
SO IF YOU'RE INTERESTED IN
CELEBRATING WE'RE GETTING READY
NEXT WEEK AND SUPPORT 6,000
CANCER FAMILIES AND FOR THE LAST
7 YEARS HAVE BEEN CO-CHAIR OF
THE ALLIANCE FOR CHILDHOOD
CANCER, THE COALITION OF MORE
THAN 20 NATIONAL ORGANIZATIONS
WORKING ON POLICY AND I'M GOING
TO TURN THINGS OVER TO NANCY TO
TALK THROUGH THE PROGRAM.
>> NEXT SLIDE PLEASE.
THE CARE TRAINING PROGRAM IS
MADE POSSIBLE BY A GRANT FROM
BAYER HEALTH CARE FOUNDATION, TO
TRAINED AND INTEGRATE PATIENTS,
SURVIVORS, CAREGIVERS INTO THE
RESEARCH PROCESS TO ENSURE THAT
THE NEEDS OF THIS GROUP ARE
ACCOUNTED FOR.
HISTORICALLY THE PATIENT AND
FAMILY PERSPECTIVES HASN'T BEEN
WELL INTEGRATED, AND THIS CAN BE
ATTRIBUTED IN PART TO PATIENT
AND CAREGIVER FEELINGS OF
INADEQUACY ON SOME LEVEL.
IT'S NOT UNCOMMON TO FEEL THEIR
OPINIONS ARE NOT IMPORTANT OR
THEY ARE NOT QUALIFIED BECAUSE
THEY LACK SKILLS AND KNOWLEDGE
TO UNDERSTAND RESEARCH.
FIRST HAND EXPERIENCE, MY SON
WAS DIAGNOSED WITH LEUKEMIA WHEN
HE WAS 3, AND ORDINARILY I WOULD
CONSIDER MYSELF SOMEBODY WHO
DOES RESEARCH AHEAD OF TIME,
COMES PREPARED, AND HAD I KNOWN
HE WAS GOING TO BE DIAGNOSED
WITH CANCER I WOULD HAVE HAD MY
HANDS ON EVERY JOURNAL ARTICLE I
COULD GET AND WOULD HAVE
DEVELOPED A REALLY LONG LIST OF
QUESTIONS.
BUT UNFORTUNATELY THE MAJORITY
OF PEOPLE DON'T HAVE THAT LUXURY
WHEN THEY GET A CANCER
DIAGNOSIS, IT WAS OVERWHELMING
TO BE THRUST INTO THIS NEW WORLD
OF TERMINOLOGY, DRUG NAMES,
DISCUSSION ABOUT RESEARCH AND
CLINICAL TRIALS, I FOUND IT
INTIMIDATING, FELT LIKE I DID
NOT HAVE INFORMATION I NEEDED TO
BE ABLE TO HAVE AN IN-DEPTH
DISCUSSION ABOUT THESE THINGS
EARLY IN MY SON'S TREATMENT.
THIS IS SOMETHING THAT SAINT
BALD RICK'S WANTS TO CHANGE,
TRAINING RESEARCH ADVOCATES WHO
UNDERSTAND PEDIATRIC DRUG
DEVELOPMENT.
BY PROVIDING A FOUNDATION OF
TERMINOLOGY AND PROCESS, OUR
HOPE IS TO MITIGATE FEELINGS OF
INTIMIDATION.
IT CAN HELP EQUIP THEM TO SERVE
AS RESEARCH ADVOCATES, BY
BRINGING FIRST HAND EXPERIENCE
WITH CANCER TO THE TABLE.
NEXT SLIDE PLEASE.
IN TERMS OF PROGRAM DEVELOPMENT
FOUR MAIN STAGES, PROGRAM,
STRUCTURE IDENTIFICATION,
CURRICULUM DEVELOPMENT, RESOURCE
GUIDE REFINEMENT, ONLINE CONTENT
TRANSFER.
AND THEN TESTING AND PROGRAM
ROLLOUT.
WE CONDUCTED A SEARCH FOR
EXISTING TRAINING PROGRAMS, AND
WE DID FIND SOME EXISTED AND
WERE GREAT PROGRAMS LIKE THOSE
OF FELLOW PANELIST HERE'S TODAY
BUT WE ALSO NOTICED THEY WERE
PRIMARILY GEARED TOWARDS CANCER
IN ADULTS.
WE WANTED TO A DEVELOP CHILDHOOD
CANCER FOCUSED THAT HIGHLIGHTED
TOPICS AND ISSUES THAT WERE
UNIQUE TO CHILDHOOD CANCER IN
OUR NICHE COMMUNITY.
SO WE FORMED AN ADVISORY
COMMITTEE AT THE BEGINNING TO
HELP INFORM DEVELOPMENT OF THE
CURRICULUM, AND YOU SEE THE
MEMBERS HERE, INCLUDING A MIX OF
RESEARCHERS, CLINICIANS, PARENTS
OF KIDS WITH CANCER.
NEXT SLIDE PLEASE.
WE IDENTIFIED THESE 12 KEY TOPIC
AREAS, AND NEITHER ONE OF US IS
REALLY CONCERNED ABOUT HAVING A
GOAL REGARDING QUANTITY OR THE
NUMBER OF ADVOCATES TRAINED.
WE WERE CONCERNED ABOUT THE
QUALITY OF THE CONTENT.
SO WE AIMED TO DEVELOP A PRETTY
SUBSTANTIVE TRAINING, LIKE
BIOMARKERS AND GENOMICS AND
PRECISION MEDICINE.
NEXT SLIDE PLEASE.
INITIALLY THE CARE TRAINING
PROGRAM WAS GOING TO CONSIST OF
IN PERSON TRAINING, FLY IN 10 TO
12 PEOPLE FOR A DAYLONG SESSION
WITH SPEAKERS, SO MANY THINGS IN
THE LAST TWO YEARS COVID HAD
OTHER PLANS.
WE PIVOTED AND DECIDED ON A TWO
PRONGED APPROACH THAT INCLUDES
ONLINE TRAINING WITH 12 MODULES
IN THE PREVIOUS SLIDE AND ALSO
COMPREHENSIVE RESOURCE GUIDE
THAT ADVOCATES COULD REFER TO
AFTER THE TRAINING FOR
REINFORCEMENT.
ULTIMATELY THAT MODEL ALLOWED
MANY MORE TO PARTICIPATE, IT'S
MORE CONVENIENT AND ECONOMICAL
AND BASICALLY DOESN'T CRAM
EVERYTHING INTO ONE DAYLONG
SESSION.
WE ALSO PUT A TREMENDOUS AMOUNT
OF CONSIDERATION SO IT OPTIMIZES
COMPREHENSION AND RETENTION,
INTO THE RESOURCE GUIDE AS A
FIRST STEP SO ALL THE
INFORMATION WAS EASILY
ACCESSIBLE AND BEGAN DEVELOPING
POWERPOINT SLIDES.
TRAINING COVERS INFORMATION AND
A NUMBER OF COMPLEX TOPICS
DIFFICULT TO ABSORB.
WE SPENT A LOT OF TIME LOOKING
AT DIFFERENT DESIGN ELEMENTS,
USING ANIMATION, GRAPHICS,
CONTRASTING COLOR SCHEMES TO
DIGEST INFORMATION MORE EASILY.
SINCE SOME PEOPLE TEND TO BE
MORE AUDITORY RATHER THAN VISUAL
LEARNERS, WE WORKED WITH A
PROFESSIONAL VOICEOVER NARRATION
FORM TO RECORD MODULES, WE WENT
THROUGH TRAINING OURSELVES AND
WE EACH RECORDED A MODULE.
AND WE PURPOSELY SELECTED THOSE
MODULES MOST LIKELY TO NEED
UPDATING AS NEW DISCOVERIES
EMERGED WITH RESEARCH.
NEXT SLIDE.
LAST STEP IN FINALIZING RESOURCE
GUIDE WE SENT FOR REVIEW TO A
SCIENTIFIC WRITER FOR EDITING.
WE HAD PEOPLE CONTRIBUTE TO
DEVELOPMENT OF CONTENT AND
WANTED A SINGULAR VOICE.
AND MAKE SURE THE CONTENT WAS
WRITTEN IN A WAY THAT COULD BE
UNDERSTOOD BY LAY AUDIENCE.
WE UPLOADED POWERPOINT SLIDES AS
VIDEO FILES, AND ALSO
CUSTOMIZATION, ADDING QUIZZES AT
THE END, DEVELOPING A
CERTIFICATE OF COMPLETION FOR
GRADUATES.
SINCE WE'RE NOT ABLE TO SHARE
LIVE DEMO TODAY WE'VE INCLUDED
SCREEN SHOTS OF THE RESOURCE
GUIDE, LOOK AT HOW THE QUIZ
QUESTIONS ARE FORMATTED, AND
ANOTHER EXAMPLE OF USING
DIFFERENT DESIGN ELEMENTS TO
SEGMENT THE CONTENT INTO MORE
MANAGEABLE AMOUNTS OF
INFORMATION.
RESOURCE GUIDE HAS MORE
INFORMATION, MORE DETAIL THAN
WHAT WE COULD INCLUDE IN THE
SLIDES, 120 PAGES LONG, INCLUDES
A GLOSSARY.
THIS IS A PRIORITY FOR US TO
MAKE SURE OUR CONTENT WAS WELL
SUBSTANTIATED.
SO WE ENDED UP INCLUDING 290
REFERENCES.
WE WERE CONSCIOUS ABOUT KEEPING
LENGTH TO A REASONABLE LENGTH,
IN TOTAL IT TAKES 4 HOURS TO
COMPLETE OUR TRAINING.
THAT'S A LOT FOR ONE SITTING.
WHICH IS WHY WE DON'T RECOMMEND
PEOPLE DO IT IN ONE SITTING.
IF THE CONTENT WAS GOING TO TAKE
MORE THAN 20 MINUTES OR SO PER
TOPIC, THAT WE WOULD DIVIDE THAT
INTO TWO VIDEOS, JUST FOR
ATTENTION SPAN PURPOSES.
I FIND QUIZZES KEEP ME ON MY
TOES.
WE HAVE QUIZZES AT THE END OF
EACH MODULE LIKE I MENTIONED
PREVIOUSLY.
ADVOCATES MUST SCORE 80% OR
HIGHER BEFORE MOVING TO THE NEXT
MODULE.
WE VIEWED QUIZZES AS MORE OF AN
OPPORTUNITY FOR REINFORCEMENT
RATHER THAN A PENALTY.
IF SOMEBODY GOT A QUESTION
INCORRECT THEY WOULDN'T SEE THE
CORRECT LETTER CHOICE BUT WOULD
SEE AN EXPLANATION OF THE
CORRECT ANSWER WITH CONTEXT THAT
THEY COULD RE-READ AND READ
BEFORE RETAKING THE QUIZ.
WE DO NOT LIMIT OF NUMBERING OF
QUIZ ATTEMPTS.
NEXT SLIDE.
WE CONDUCTED TESTING IN THE
FALL, LAUNCHED THE PROGRAM WITH
THE FIRST COHORT, VERY NEW
PROGRAM.
WE'VE HAD TWO ROUNDS OF
GRADUATES SO FAR.
13 IN THE FIRST COHORT, 18 IN
THE SECOND.
SECOND COHORT JUST FINISHED
TRAINING LAST WEEK.
IT HAS BEEN INVITATION ONLY FOR
THE FIRST TWO ROUNDS AND THEY
ARE GIVEN ABOUT A MONTH TO
COMPLETE THE TRAINING AND THEN
THEY CAN DO THAT ON THEIR OWN
SCHEDULE.
ONCE THEY COMPLETE THE TRAINING
THEY RECEIVE AN E-MAIL WITH A
LINK TO A SURVEY.
WE REVIEW THE SURVEY FEEDBACK
AND MAKE CHANGES AS NEEDED SO
THAT WE CAN CONTINUE TO IMPROVE
THE PROGRAM WITH EACH ROLLOUT.
FEEDBACK HAS BEEN POSITIVE.
WE'VE HEARD TRAINING IS
COMPREHENSIVE, EASY TO NAVIGATE,
THERE'S APPROPRIATE LEVEL OF
DETAIL, AND NARRATION HAS BEEN
HELPFUL AND RETAINING
INFORMATION.
THE GUIDE WILL BE A HANDY TOOL
FOR FUTURE REVIEW.
WHAT STOOD OUT MOST TO ME WAS
ADVOCATE WHO SAID THIS IS REALLY
A LOT OF INFORMATION, BUT
KNOWLEDGE IS POWER.
AND I THINK THAT ENCAPSULATES
LARGELY WHAT WE WERE AIMING FOR
WITH THE PROGRAM, WHICH IS
EMPOWERMENT OF PATIENTS AND
CAREGIVERS IN THE RESEARCH
PROCESS.
NEXT SLIDE.
CARE TRAINING PROGRAM REALLY
MEANS A LOT TO US NOT JUST
BECAUSE OF THE TIME AND EFFORT
WE PUT INTO THIS BUT BECAUSE
THERE'S BEEN A NEED FOR PROGRAM
LIKE THIS FOR A WHILE NOW IN THE
CHILDHOOD CANCER COMMUNITY.
IT'S BEEN A REALLY WONDERFUL AND
REWARDING EXPERIENCE TO BE ABLE
TO BRING THIS TO FRUITION.
THANK YOU.
>> NEXT WE HAVE RYAN.
>> THANK YOU FOR ORGANIZING
THIS.
I'VE BEEN ABLE TO LISTEN TO MOST
OF THE DAY, I APPRECIATE THE
INVITE TO SPEAK AND LISTEN.
I THANK DR. SHARPLESS FOR BEING
STRAIGHTFORWARD AND REFERRING TO
DR. SHARPLESS, REFERRING TO DR.
TABAK HAVING A RESPECT FOR ALL.
I COULDN'T AGREE MORE, WHAT
WE'RE TALKING ABOUT, PATIENT
EDUCATION AND EMPOWERMENT IS
DRIVING TOWARDS THAT
ENVIRONMENT, INCLUSIVE
ENVIRONMENT FOR ALL IN RESEARCH,
IN OUR CASES THROUGH EDUCATION.
MOST OF YOU KNOW FRIENDS OF
CANCER RESEARCH.
I THINK ABOUT A THIRD TO HALF
MAYBE OF ALL OF YOU HAVE
EXPERIENCED PROGRESS FOR
PATIENTS IN SOME WAY THROUGH
FORMAL OR INFORMAL PARTNERSHIPS,
THANK YOU FOR THOSE PARTNERSHIPS
OVER THE MANY YEARS, PROGRESS
FOR PATIENTS, NEXT SLIDE PLEASE.
WE'VE BEEN AROUND FOR SIX YEARS.
THIS WAS AN OFFSHOOT, STILL
PARTS OF OUR CORE MISSION
THROUGH THE WORK IN THE
REGULATORY ENVIRONMENT,
PRIMARILY WITH FDA, COMPANIES,
ALL THOSE WHO BUILD, ADDRESS,
AND EXECUTE CLINICAL TRIALS.
WHAT WE WERE FINDING OURSELVES
AT FRIENDS DOING IS GIVINGS
ONE-OFF PRESENTATIONS TO LARGER
COMPANIES, TO LARGER
ORGANIZATIONS, TO SMALLER GROUPS
OF ORGANIZATIONS, ABOUT THE
IMPORTANCE OF THE FDA AND HOW
REALLY PATIENTS COULD GET
INVOLVED BECAUSE FOR MANY YEARS
EVEN FOR US HERE AT FRIENDS, 25
YEARS OLD NOW, BUT FDA WAS THIS
BLACK BOX.
I KNOW TO A LOT OF PATIENTS AND
THEIR ADVOCATES AND CAREGIVERS
FDA IS CERTAINLY A BLACK BOX,
ESPECIALLY AT THE TIME OF
DIAGNOSIS AND YOU'RE STARTING TO
TALK ABOUT, OKAY, I NEED TO LOOK
AT WHAT CLINICAL TRIALS ARE
AVAILABLE TO ME.
SO WHAT WE TOOK A STEP BACK AND
LOOKED AT TO SAY WAS HOW CAN
FRIENDS WITH OUR EXPERTISE NOT
BEING DUPLICATIVE CREATE A
RESOURCE FOR FRIENDS AND
PARTNERS IN THE ADVOCACY
COMMUNITY.
WE CREATED THROUGH A LOT OF
RESEARCH PROGRESS FOR PATIENTS
.ORG, OPEN FREE ACCESS, ONLINE
LEARNING PLATFORM.
IT'S A SELF-GUIDED PLATFORM.
OUR PARTNERS AT SAINT BALDRICK'S
SAYING EVERYONE LEARNS AT THEIR
PACE, MINUTE AMOUNTS OF TIME
HERE AND THERE, SO THIS IS AS
SOON AS YOU'RE REGISTERED
THROUGH THE PROCESS, START AND
STOP AS YOU PLEASE.
YOU CAN RETURN TO WHERE YOU LEFT
OFF.
WE WANTED TO MAKE THIS EASY FOR
INDIVIDUALS OF ALL EDUCATION LEVELS.
WE'VE HAD ANYTHING FROM A
PATIENT JUST DIAGNOSED AND
OFFERED A CLINICAL TRIAL THAT
WANTED TO TAKE THE COURSE QUICK
BECAUSE THEY HAD A DECISION TO
BE MADE THE NEXT DAY, TO TRAINED
QUOTE/UNQUOTE PROFESSIONAL
PATIENT ADVOCATES LIKE SOME OF
US ON THIS CALL.
WE'VE HAD PARTNERSHIPS WITH MANY
OF YOUR ORGANIZATIONS, I'LL PICK
ANJEE OUT, THE CHAIR OF THIS
COMMITTEE, A LONGSTANDING
COLLABORATION WITH COLORECTAL
CANCER THAT HAS ALLOWED THEM TO
UTILIZE PROGRESS FOR PATIENTS
FOR THE EXTRA REGULATORY
CLINICAL TRIALS COMPONENT.
SO, THE GOALS HERE ARE REALLY
UNDERSTANDING OF DRUG
DEVELOPMENT AND REGULATORY
PROCESS AND GUIDELINES AND
EVERYTHING AROUND THOSE
PROCESSES.
BECAUSE AS WE ALL KNOW, THESE
DISCUSSIONS THAT ARE BEING HAD,
WHETHER THEY ARE AT, YOU KNOW,
ONCOLOGY DRUG ADVISORY COMMITTEE
IN THE FDA OR AROUND THE TABLE
LIKE THIS, ESPECIALLY IN
WASHINGTON WHERE I SIT, ACRONYMS
START FLYING, DIFFERENT WORDS
START TO MELD TOGETHER INTO ONE
GIANT BLOB AS PEOPLE ARE TALKING
TO YOU.
WE REALLY WANTED AND THOUGHT IT
WAS OUR DUTY TO HAVE PATIENTS AS
EQUIPPED AS POSSIBLE TO
UNDERSTAND THESE THINGS, EMPOWER
THEM TO SAY STOP, NIGHT TO ASK A
QUESTION HERE.
BUT MAKE SURE THEY ARE THE MOST
EQUIPPED AS POSSIBLE GOING INTO
THE CONVERSATIONS.
JUST SO THEY FEEL A COMFORT
LEVEL OF UNDERSTANDING BEFORE
THEY EVEN STEP FOOT INTO THE
ROOM OR VIRTUAL ROOM LIKE THIS.
THE KEY TERMINOLOGY IS SOMETHING
THAT WE'VE REALLY HAMMERED HOME
THROUGHOUT PROGRESS FOR
PATIENTS, SUPPLEMENTARY
COMPONENTS WE'VE PUT OUT SINCE,
AND WITHIN THE TRAINING THAT WE
DO WITH INDIVIDUALS AS THEY ARE
BEING PLACED WITHIN SOME OF
THESE PROGRAMS.
THE BASELINE KNOWLEDGE OF THE
CLINICAL TRIAL DESIGN REALLY
FROM THE REGULATORY PERSPECTIVE
AND THROUGH TO STATISTICS, NOT
GETTING INTO THE NUANCES HERE
BUT WE WANTED PATIENTS TO HAVE
THAT LEVEL OF UNDERSTANDING THAT
IF THEY WERE IN CONVERSATIONS,
SAY WITH A COMPANY EARLY ON IN
PROTOCOL DEVELOPMENT, THEY COULD
AT LEAST UNDERSTAND WHERE
STATISTICS COME INTO PLAY, ET
CETERA, BECAUSE OUR GOAL HERE
ALL ALONG WAS TO EMPOWER AND
EDUCATE PATIENTS BUT ALSO
PROVIDE THEM WITH THE
OPPORTUNITIES THAT ARE AVAILABLE
SO THEIR INPUT CAN CHANGE THE
FACE OF DRUG DEVELOPMENT AND
CLINICAL TRIAL DEVELOPMENT.
NEXT SLIDE.
SO WHAT YOU SEE HERE IS THE
OPENING AND OUR COLLEAGUES SAID,
WITHOUT BEING ABLE TO SHOW YOU
THE ACTUAL -- I ENCOURAGE YOU TO
SIGN UP FOR FREE AT
PROGRESSFORPATIENTS.ORG TO TAKE
A LOOK.
WE'RE OPEN TO CREATING BRANDED
PARTNERSHIPS WITH OTHER
ORGANIZATIONS AS WELL, TOTALLY
FREE OF CHARGE.
THIS PROGRAM LIKE ALL PROGRAMS
AT FRIENDS OF CANCER RESEARCH IS
100% FREE OF CHARGE TO ANYONE IN
THE PUBLIC, ESPECIALLY IN TH
ADVOCACY COMMUNITY.
THESE ARE THE FOUR MODULES.
TIME FOR THE TOTAL TO COMPLETION
AVERAGES ABOUT 2 HOURS,
OBVIOUSLY THERE'S EXTREME
OUTLIERS ON BOTH SIDES.
WE'VE HEARD 90 MINUTES IF YOU
SIT DOWN AND DRIVE THROUGH
STRAIGHTFORWARD.
IT'S FAIRLY BRIEF.
THERE ARE QUIZZES THROUGHOUT,
JUST MORE FROM A CHECK-IN
PERSPECTIVE MAKING SURE THE
INDIVIDUALS ARE UNDERSTANDING
THAT IT'S KIND OF A ONE GUESS,
THEN THE NEXT GUESS TELLS YOU
THE ANSWER, DESCRIBES WHY THE
ANSWER IS WHAT IT IS, IT'S A
REINFORCING STRUCTURE, NOTHING
THAT IS LIKE REQUIRED TO MOVE ON
TO THE NEXT STEP NECESSARILY.
I WON'T GO IN DEPTH WHAT EACH
MODULE IS.
THEY ARE STRAIGHTFORWARD AS FAR
AS LABELING.
ADVOCACY AND ACTION SIDE OF
THINGS IS REALLY AS THE ADVOCATE
OR PATIENT OR CAREGIVER IS DONE
WITH THE COURSE GIVING THEM
JUMPING-OFF POINTS, SEEING WHERE
ADVOCATES HAVE CHANGED THE FACE
OF CANCER RESEARCH, OTHER
RESEARCH.
THIS IS CANCER FOCUSED.
WE'VE HAD SO MANY PARTNERS
OUTSIDE OF JUST ONCOLOGY TAKING
THIS COURSE.
CANCER IS A CASE STUDY LIKE AT
FRIENDS OF CANCER RESEARCH FOR
OUR SCIENCE AND POLICY PROGRAMS.
IT FOLLOWS THAT SUIT.
NEXT SLIDE.
AFTER FIVE YEARS, NOW SIXTH
YEAR, EDUCATED OVER 500 PATIENTS
AND ADVOCATES, MORE THAN 50%
HAVE GONE TO PARTICIPATE IN A
DRUG DEVELOPMENT CLINICAL TRIAL
REGULATORY PROCESS AFTER TAKING
THE COURSE, I'LL TOUCH ON THAT
IN THE NEXT SLIDE.
70% CAME THROUGH EXISTING
PARTNERSHIPS WITH PATIENT
ADVOCACY ORGANIZATIONS, AS I
DESCRIBED BEFORE.
WE CREATED THIS AS A TOOL AND
THAT TOOL CONTINUES TO SHALL AND
CREATE INTERESTING AND UNIQUE
PARTNERSHIPS.
WE'VE HAD PHILANTHROPIC BOARDS
OF FOUNDATIONS HAVE THEIR ENTIRE
BOARD OF DIRECTORS TAKE THIS
COURSE SO THEY UNDERSTAND WHEN
THEY ARE DELVING OUT GRANTS,
REALLY UNDERSTANDING THE
PROCESSES, REALLY SURPRISING AND
INTERESTING TO SPEAK TO THAT
BOARD AFTER THEY WENT THROUGH
THIS COURSE.
AND HOW MANY INDIVIDUALS HAD
KIND OF BEEN IN THE SPACE,
PHILANTHROPIC ONCOLOGY RESEARCH
SPACE FOR A WHILE, BUT THAT THEY
LEARNED SO MUCH AND IT GAVE THEM
A BETTER PERSPECTIVE, THEY SAID,
HOW THEY DELVE OUT GRANTS AND
OTHER FUNDING.
NEXT SLIDE.
HERE'S WHAT I WOULD SAY IS THE
BREAD AND BUTTER.
OTHER THAN LIKE THE NUMBER ONE
OF LIKE EDUCATION AND THE
OPPORTUNITY TO EMPOWER AND
EDUCATE PATIENTS, THAT'S ALL
THEY WANT AND GET, THAT'S
EXCEPTIONAL, A HUGE WIN, IN OUR
MINDS.
FOR THOSE ADVOCATES WHICH TURNS
OUT AS YOU SAW FROM THE LAST
STATISTIC USUALLY IS MOST THAT
THEY ARE EMPOWERED AND WANTING
TO PROVIDE INPUT OR LEARN MORE
OR UNDERSTAND WHAT OPPORTUNITIES
ARE OUT THERE, WE PROVIDE
ADVOCATE MATCHMAKING SERVICE
WHEREAS WHETHER IT'S ANOTHER
ORGANIZATION, A PRIVATE COMPANY,
FDA, NCI, PARTNERS AT THE NCI
AND NIH, AS WELL AS SOME UNIQUE
OTHER PUBLIC/PRIVATE
PARTNERSHIPS, THEY PROVIDE US
WITH THE TYPES THEY ARE LOOKING
FOR AND PROVIDE A MATCH-MAKING
SERVICE TO THOSE WHO QUALIFY.
IT'S BEEN INCREDIBLY SUCCESSFUL
AND AS NONE OF US ON THIS CALL
WOULD BE SURPRISED BUT SOME ARE
ALWAYS SURPRISED, SOME
COMPANIES, THAT THEY HAVE A VERY
SPECIFIC TYPE OF PATIENT THEY
ARE LOOKING FOR, IT COULD BE
MUST BE WEEKS OR WEEKS OF
INVOLVEMENT, 20, 30 INDIVIDUALS
SAYING THEY WANT TO PARTICIPATE
IN THIS.
WHAT YOU'RE SEEING ON THE SCREEN
ARE THE DIFFERENT TYPES OF
OPPORTUNITIES THAT WE'VE PLACED
PEOPLE AT.
YOU'RE SEEING PROTOCOL DESIGN,
CLINICAL TRIAL RESOURCES,
BARRIERS, WORK WE'VE HAD
PATIENTS EMBEDDED REALLY EARLY
ON IN RESEARCH DEVELOPMENT, AT A
COMPANY OR CLINICAL TRIAL
DEVELOPMENT, WHERE THEY CAN
ACTUALLY CHANGE THE FUTURE OF
THE TRIAL.
LIKE PATIENTS ARE THE MOST
SCARCE RESOURCE WE HAVE IN
CLINICAL TRIALS, AND IF YOU'RE
CREATING A TRIAL THAT NO PATIENT
WANTS TO GO ON IT'S NOT GOING TO
BE SUCCESSFUL.
SO THE EDUCATION TO COMPANIES
AND TO OTHER INSTITUTIONS
CONDUCTING CLINICAL TRIALS HAS
BEEN AN INCREDIBLY IMPORTANT
PART OF PROGRESS FOR
PATIENTS.ORG, COULDN'T HAVE
PREDICTED PRIOR HOW MUCH WE WERE
ABLE TO CHANGE AND BY WE I MEAN
THE ADVOCATES, PATIENTS,
CAREGIVERS, CHANGE CULTURE
WITHIN SOME OF THESE COMPANIES
OF HOW THEY LOOK AT PATIENT
INPUT AND WHEN THEY LOOK AT
PATIENT INPUT.
NEXT SLIDE.
ANJEE MENTIONED IN THE OPENING
FOR THE SECTION TALKING ABOUT
HOW DIFFERENT ORGANIZATIONS AND
THESE PROGRAMS HAVE EVOLVED.
I THINK THERE'S NO BETTER
EXAMPLE FOR US HERE AT FRIENDS,
IT'S A TOPIC ALL OF YOU US HERE
ARE WORKING TOWARDS IN THE
SHADOWS AND THE SUNLIGHT OF THE
RECENT SOCIAL JUSTICE MOVEMENT,
ACCESS AND EQUITY.
WE PARTNERED AND WERE LUCKY
ENOUGH TO PARTNER 1/2 YEARS AGO,
RIGHT-- 2 1/2 YEARS AGO, RIGHT
BEFORE COVID, IN SANTA MONICA,
CALIFORNIA, JANUARY OF 2020, A
LITTLE BIT OF A LAST HURRAH TRIP
BEFORE THE PANDEMIC, LAUNCHED
PROJECT TEACH, TRAINED EMPOWERED
ADVOCATES FOR COMMUNITY HEALTH
IS THE ACRONYM, FROM A PCORI
GRANT EMPOWERING BLACK WOMEN
SPECIFICALLY THROUGH EDUCATION
OUTREACH TO PARTNER IN AND
ENGAGE WITH RESEARCHERS.
WHAT WE'VE LEARNED THROUGH
PROGRESS FOR PATIENTS AND NOW
LEARNED FROM A YEAR AND A HALF
OF FOCUS GROUPS AND EDUCATION
COMPONENTS ACROSS THE COUNTRY
AND VIRTUALLY, LAUNCHING
SUBSEQUENTLY LAST YEAR THIS
PROGRAM WAS, NOT SURPRISING,
EVEN WHEN YOU TRY TO CREATE A
PROGRAM LIKE PROGRESS FOR
PATIENTS THAT'S ALL INCLUSIVE,
YOU CAN ONLY SPEAK TO SO MANY
USING THE SAME TONE.
AND USING THE SAME INFORMATION.
AND EXPECTING A DIFFERENT
OUTCOME.
WHAT WE DID BY PARTNERING WITH
BLACK WOMEN'S HEALTH IMPERATIVE
IS RECREATE PROGRESS FOR
PATIENTS, TORE THE WHOLE THING
DOWN, REBUILT FROM THE BASE, TO
FOCUS SPECIFICALLY ON BLACK
WOMEN.
AND THIS HAS BEEN SUCCESSFUL.
NOW, ALREADY TRAINING 100
EPPs, EMPOWERED PATIENT
PARTNERS, ACROSS THE COUNTRY,
SOCIOSOCIOECONOMIC DIVERSITY,
AGE DIVERSITY, WITHIN BLACK
WOMEN, AND WITH THIS HITTING AT
THE TIME, YOU KNOW, WE WENT LIVE
RIGHT AFTER KIND OF JUNE OF
2020, SOCIAL JUSTICE MOVEMENT,
AND THEN ESPECIALLY ONCE THE
VACCINES CAME OUT, WE SAW
SOMETHING FROM THIS PROGRAM THAT
WE NEVER COULD HAVE PREDICTED
OBVIOUSLY WITH THE PANDEMIC, BUT
WHAT THIS BECAME USEFUL TOOL
WITHIN THE BLACK COMMUNITY WAS
ABOUT EDUCATION OF CLINICAL
TRIALS, HOW THERAPIES AND
VACCINES ARE EVALUATED EVEN
DURING SOME OF THE PANDEMIC
TIMES, AND WITH BLACK WOMEN
BEING KIND OF THE CENTER OF THE
UNIVERSE OF HEALTH DECISIONS
WITHIN THEIR HOUSEHOLDS AND
COMMUNITIES, IT REALLY WAS AN
EMPOWERMENT TOOL FOR INDIVIDUALS
THAT WANTED TO GET OUT THERE AND
EDUCATE ABOUT CLINICAL TRIALS IN
GENERAL BUT ALSO TO TALK TO
THEIR BROTHERS, SISTERS,
MOTHERS, FATHERS, ABOUT WHAT HAD
HAPPENED ON THE OTHER SIDE OF
THE BLACK CURTAIN WITH THE FDA
IN GOING THROUGH EVEN THE
VACCINE DEVELOPMENT.
SO WHILE THIS, AGAIN, USES
CANCER AS A CASE STUDY, IT
SHOWED IF YOU CREATE A TOOL AND
DO IT IN THE RIGHT WAY, THE
OUTCOME YOU SHOULD HAVE TO BE
OPEN TO AND SHOULD BE OPEN TO,
LIKE AN EXCEPTIONAL ARRAY OF
BENEFIT THAT YOU DIDN'T EXPECT
BEFORE.
I'LL LEAVE IT THERE.
HAPPY TO ANSWER QUESTIONS.
WE'LL DIVE INTO SOME Q&A LET.
THANK YOU AGAIN FOR HAVING US
AND ALLOWING ME TO PRESENT THIS.
>> EXCELLENT.
THANK YOU, RYAN.
NEXT WE HAVE A BREAST CANCER
COALITION, MICHELLE.
>> ALL RIGHT.
IT'S A PLEASURE TO BE HERE TO
TALK ABOUT NBCC'S LONG HISTORY
OF ADVOCATE EDUCATION PROGRAMS.
I'VE BEEN WITH NBCC FOR FOUR
YEARS.
I'M ALSO A 13-YEAR BREAST CANCER
SURVIVOR.
JUST A FEW WORDS ABOUT NBCC TO
PUT THE EDUCATION THAT WE
PROVIDE INTO CONTEXT.
SINCE ITS FOUNDING IN 1991, NBCC
HAS HAD ONE MISSION.
THAT HAS BEEN TO END BREAST
CANCER.
AND WE DO THAT BY THREE MAIN
GOALS.
RESEARCH.
SO INCREASING FUNDING FOR
RESEARCH, AND PARTICIPATING IN
THAT RESEARCH TO ENSURE IT'S
HIGH QUALITY, PEER-REVIEWED
RESEARCH AND THAT FUNDING IS
WELL SPENT.
THAT'S A KEY GOAL OF OURS.
ANOTHER AREA IS INCREASING
ACCESS FOR ALL WOMEN AND MEN TO
HIGH QUALITY TREATMENT AND CARE
AND TO BREAST CANCER CLINICAL
TRIALS.
AND THEN THE THIRD PRIMARY GOAL
THAT WE WORK TOWARD IS
INCREASING THE INFLUENCE OF
WOMEN AND MEN WHO ARE LIVING
WITH BREAST CANCER AND OTHER
BREAST CANCER ACTIVISTS IN THE
DECISION MAKING THAT AFFECTS ALL
ISSUES SURROUNDING THE DISEASE.
MANY PEOPLE ASK WHY SHOULD
ADVOCATES BE AT THE TABLE?
WHAT WE WOULD SAY IS THAT'S
BECAUSE THEY HAVE NO AGENDA.
AND IN OUR -- EXCEPT FOR IN OUR
WORLD, TO END BREAST CANCER.
THERE'S NO OTHER REASON THAT
THEY PARTICIPATE.
NOT ADVANCEMENT OR FINANCIAL
GAIN, SIMPLY TO IMPROVE OUTCOMES
FOR PATIENTS.
AND THE ADVOCATE'S ROLE IN THE
PROCESS FROM OUR PERSPECTIVE IS
TO CHALLENGE, TO ASK THE HARD
QUESTIONS AS AN OUTSIDER, YOU
KNOW, AND WE CAN CHALLENGE THOSE
WITHIN THE SYSTEM.
WE'VE DONE IT MANY TIMES OVER
THE LONG HISTORY OF NBCC.
WE FEEL THAT'S A ROLE FOR
ADVOCATES TO TAKE.
WE CAN TAKE -- WE'RE NOT GOING
TO TAKE EVERYTHING WE HEAR FROM
THE SCIENTIFIC COMMUNITY FOR
GRANTED.
WE DON'T ASSUME BECAUSE SOMEONE
WELL KNOWN IS GIVING YOU A PIECE
OF INFORMATION THAT IT IS
NECESSARILY THE TRUTH.
OUR ROLE IS ALSO TO COLLABORATE
WITH RESEARCHERS ON ISSUES THAT
WILL MAKE A DIFFERENCE IN
PEOPLE'S LIVES.
WE'RE THERE TO EXPLAIN THE
ADVOCATE PERSPECTIVE.
IT'S WHAT WE OFFER.
WE'RE NOT THE SCIENTIST BUT CAN
OFFER AN ADVOCATE PERSPECTIVE.
AND THEN REPORT BACK TO OUR
CONSTITUENCIES, BROADLY, WHAT'S
HAPPENING IN THE WORLD OF BREAST
CANCER, WHERE ARE WE HELPING
MAKE A DIFFERENCE?
ONE OF THE MOST IMPORTANT ROLES
FOR ADVOCATES IS OVERSIGHT.
WE CALL THE LIKE IT IS.
WHEN WE SEE IF SOMETHING IS NOT
RIGHT, WE SPEAK OUT.
I THINK THAT'S SOMETHING
ADVOCATES HAVE TO BE EMPOWERED
TO DO.
NEXT SLIDE.
SO IN TERMS OF WHAT AN EDUCATED
ADVOCATE IS, WE SEE AN EDUCATED
ADVOCATE AS AN INDIVIDUAL WHO IS
RESPONSIBLE AND ACCOUNTABLE TO A
PATIENT CONSTITUENCY.
AND THIS IS OFTEN BY WAY OF
THEIR CONNECTION WITH A
PATIENT-LED OR PATIENT-CENTERED
ADVOCACY ORGANIZATION.
WE HAVE TO BE INFORMED ADVOCATE
AND REPORT BACK TO CONSTITUENCY
AND MAKE CERTAIN WE'RE ALWAYS
SPEAKING IN THAT CONTEXT.
SO, AN EDUCATEDDED A ADVOCATE
NEEDS TO BE PERSONAL AFFECTED BY
THE SPECIFIC DISEASE OR
CONDITION.
IN OUR OPINION, IT CANNOT BE
ABOUT YOUR OWN PERSONAL DISEASE.
OR YOUR OWN EXPERIENCE WITH THE
DISEASE.
IT HAS TO BE IN A BROADER
PERSPECTIVE THAT WHAT RESEARCH
ADVOCATES BRING TO THE TABLE
BECAUSE THEY ARE REPRESENTING A
CONSTITUENCY.
EQUALLY IMPORTANT, YOU MUST OR
WE BELIEVE ADVOCATES NEED TO BE
KNOWLEDGEABLE, TRAINED, AND NEED
TO BE COMPETENT IN THEIR ABILITY
TO PARTICIPATE IN THE
DECISION-MAKING PROCESS AROUND
SCIENCE AND MEDICINE.
NEXT SLIDE.
SO AS PART OF OUR ACTIVITIES,
NBCC DOES MANY THINGS, WE WORK
IN LARGE PART TO ENSUR ADVOCATES
HAVE SEATS IN RESEARCH, PUBLIC
POLICY, PUBLIC HEALTH, BUT IN
RETURN FOR THIS WE UNDERSTAND
ADVOCATES NEED TO BE EDUCATED,
TRAINED, SUFFICIENTLY GROUNDED
IN SCIENCE AND PUBLIC HEALTH
CONCEPTS THAT WILL ENABLE THEM
TO PARTICIPATE CONSTRUCTIVELY IN
THE WIDE RANGE OF FORUMS THAT
INFLUENCE DECISIONS ON BREAST
CANCER RESEARCH.
NEXT SLIDE.
TO PROVIDE ADVOCATES WITH THESE
TOOLS, THE COALITION DEVELOPED
PROJECT LEAD, LEADERSHIP,
EDUCATION, ADVOCACY, AND
DEVELOPMENT.
BELIEVE IT OR NOT THIS PROGRAM
WAS FIRST LAUNCHED IN 1995.
AND OVER THE YEARS IT HAS
EVOLVED, YOU'LL SEE A NUMBER OF
DIFFERENT TYPES OF PROJECT LEAD
TRAINING THAT WE HAVE OFFERED AT
VARIOUS TIMES IN OUR HISTORY.
BUT AT PRESENT OUR PRIMARY
EDUCATIONAL TRAINING PROGRAM,
KEY ONE, THAT LAUNCHD INTO
RESEARCH ADVOCACY CAREER IS
PROJECT LEAD INSTITUTE, INTENSE
SIX-DAY IN-PERSON TRAINING
PROGRAM THAT EDUCATES ADVOCATES
ON THE SCIENCE, LANGUAGE,
CONCEPTS IN THE PROCESS OF
SCIENCE.
IT'S NOT AN UPDATE ON WHAT'S
HAPPENING IN THE FIELD OR
TREATMENT LANDSCAPE.
BUT REALLY RATHER THE KEY
FUNDAMENTALS OF SCIENCE AND
RESEARCH.
THE INSTITUTE CURRICULUM WHICH
IS VERY HIGH LEVEL SHOWN ON THE
RIGHT HERE IS DIFFICULT AND
ENCOMPASSES BASIC SCIENCE, CELL
AND MOLECULAR BIOLOGY, GENETICS
AND GENOMICS, IMMUNOLOGY, WE
HAVE AN EPIDEMIOLOGY CORE THAT
COVERS BIOSTATISTICS, AT HIGH
LEVEL.
WE DON'T EXPECT PEOPLE TO BE
NUMBER CRUNCHERS AFTER THEY
LEAVE.
BUT TO UNDERSTAND THE
STATISTICS.
CLINICAL TRIAL DESIGN, CRITICAL
APPRAISAL OF LITERATURE, BUT
ALSO MEDIA, AND WE HAVE ADVOCACY
DEVELOPMENT CORE WHICH IS REALLY
TO HELP ADVOCATES UNDERSTAND HOW
YOU GAIN INFLUENCE, WHAT ARE
YOUR OPPORTUNITIES, AND
ADVOCATES DURING PROJECT LEAD
PUT TOGETHER ACTION PLAN, THEY
DEVELOP IT OVER THE COURSE OF
THE WEEK, THAT THEY WILL THEN
TAKE -- TO UTILIZE TRAINING AND
MAKE IT MORE MEANINGFUL FOR
THEM.
SO, THE INSTITUTE IS LED BY
RENOWNED FACULTY.
IT'S NOT TAUGHT BY THE ADVOCATES
THEMSELVES, SO THAT WAS ADVOCATE
DEVELOPED IN COLLABORATION WITH
THE SCIENTIFIC AND RESEARCH
COMMUNITY.
AND THESE FACULTY COME BACK
VIRTUALLY EVERY YEAR.
OVER TIME WE HAVE BROUGHT IN NEW
FACULTY, BECAUSE IT'S BEEN
AROUND FOR QUITE A LONG TIME.
THE OTHER THING IS WE BRING BACK
FIVE TO SIX FORMER PROJECT LEAD
GRADS WHO WILL SERVE AS MENTORS
TO A GROUP, EACH MENTOR IS
PAIRED WITH FIVE TO SIX OF THE
ADVOCATES WHO ATTEND PROJECT
LEAD AND PROJECT LEAD CLASS IS
ABOUT -- RANGES FROM 30 TO 60,
IN FACT OUR LAST PROGRAM WAS IN
2019 AND WE HAD 58 INDIVIDUALS
PARTICIPATE.
SO WE BRING IN MENTORS, PAIRED
WITH THE NEW ADVOCATES, AND THEY
HELP SHEPHERD THEM THROUGH THE
PROGRAM.
AND THEN THEY ALSO WORK IN SMALL
GROUPS, SMALL GROUP DISCUSSIONS
THROUGHOUT THE INSTITUTE.
I'LL SAY A LITTLE MORE ABOUT
THAT IN A MOMENT.
I THINK THE THING TO CONSIDER,
TO BECOME A TRULY EDUCATED
RESEARCH ADVOCATE WE'VE
RECOGNIZED A LONG TIME AGO IT'S
NOT JUST A ONE AND DONE TRAINING
COURSE, THAT THE ADVOCATES GO
THROUGH.
ONCE THEY LEAVE PROJECT LEAD
THEY ARE EQUIPPED TO PARTICIPATE
IN RESEARCH.
WE KNOW IT'S A PROCESS.
IT REQUIRES ONGOING EDUCATION
AND TRAINING AND STAYING CURRENT
WITH ISSUES AND FRANKLY A LOT OF
SELF-TRAINING.
WE DO OFFER ONGOING CONTINUING
EDUCATION, WE PROVIDE WEBINARS,
ROUGHLY FIVE TO TEN PER YEAR
DEPENDING ON WHAT'S GOING ON, ON
DIFFERENT TOPICS.
USUALLY STILL BUILDING RELATED
TOPICS OR AROUND SPECIFIC BREAST
CANCER, YOU KNOW, RESEARCH, SOME
NEW AREA THAT'S COMING INTO
FOCUS, WE WANT ADVOCATES TO BE
EQUIPPED TO BE ABLE TO TALK
ABOUT THOSE THINGS.
TWO SERIES THIS YEAR, ONE A
SERIES ON CRITICAL APPRAISAL OF
CLINICAL TRIAL PUBLICATIONS IN
LITERATURE, WHAT ADVOCATES NEED
TO UNDERSTAND ABOUT WHEN THEY
READ THESE ARTICLES.
WHAT TO LOOK FOR.
AND ALSO ANOTHER SERIES ON THE
ETHICS OF RESEARCH, INCLUDING
CLINICAL TRIAL DESIGN, IRBs,
HOW ALL OF THAT FUNCTIONS.
MIND YOU THEY HAVE HAD SOME OF
THIS DURING THEIR VIRTUAL --
DURING THE PROJECT LEAD
INSTITUTE BUT THIS IS JUST
CONTINUING TO BUILD ON THEIR
TRAINING.
INTERESTINGLY TOO WE HAVE ALSO
RECENTLY LAUNCHED -- NANCY
TALKED ABOUT THE LEARNING
MANAGEMENT SYSTEM SAINT
BALDRICK'S ARE USING, WE'RE
USING TALENT LMS AS WELL.
OUR ABILITY TO DO THIS CAME OUT
OF A PCORI-FUNDED GRANT TO BUILD
THE CAPACITY FOR TRAINING AND
ONGOING EDUCATION OF OUR
ADVOCATE COMMUNITY ON
PATIENT-CENTERED OUTCOMES
RESEARCH.
AND SO WE HAVE A LEARNING
MANAGEMENT SYSTEM WHERE OF WHAT
WE'RE DOING AT THIS POINT IS
REPURPOSING WEBINAR TRAININGS
THAT WE CONDUCTED OVER THE PAST,
INTO MODULAR CONTENT THAT
ADVOCATES CAN ACCESS ON DEMAND.
IT INCLUDES QUIZZES AND SIMILAR
TO WHAT NANCY HAD DESCRIBED.
AND THEN OF COURSE WE ALSO OFFER
OUR ANNUAL SUMMIT WHICH PROVIDES
US WITH AN OPPORTUNITY TO
PROVIDE WORKSHOPS, PLENARY PANEL
DISCUSSIONS ON A VARIETY OF
ISSUES TO ADVOCATE LEADERSHIP.
AND SO WE HAVE A NUMBER OF
PROGRAMS THAT WE EVEN TRIED THIS
YEAR A PUBLIC POLICY PROJECT
LEAD FOR ADVOCATES MORE INVOLVED
IN PUBLIC POLICY ADVOCACY.
NEXT SLIDE.
THIS IS JUST A SLIDE THAT SHOWS
OUR MOST RECENT PROJECT LEAD
CLASS.
IT WAS FROM 2019.
ALSO ON THE RIGHT SIDE ARE THE
MENTORS THAT CAME THAT YEAR.
OF COURSE WE HAVEN'T AN ABLE TO
HOST A PROJECT LEAD IN TWO YEARS
BECAUSE OF THE PANDEMIC BUT THIS
YEAR WE'RE PLANNING FOR, KNOCK
ON WOOD, THAT WE'RE GOING TO BE
HOSTING TWO IN-PERSON SESSIONS.
AT THE END OF JULY AND IN THE
FIRST PART OF AUGUST.
SO, NEXT SLIDE.
I WANTED TO SAY A LITTLE BIT
ABOUT THE DEVELOPMENT OF THIS.
AGAIN, THIS WAS DEVELOPED BACK
IN 1995, IT WAS LARGELY DRIVEN
OUT OF THE NEED AS I MENTIONED
EARLIER THAT WE FELT ADVOCATES
COULD PLAY A PART AND WERE DOING
SO IN THE DEPARTMENT OF DEFENSE,
BREAST CANCER RESEARCH PROGRAM,
WHICH NBCC ADVOCACY HELPED BRING
ABOUT, TO PLAY A PART IN THESE
TYPES OF RESEARCH ENDEAVORS THEY
NEED TO BE EDUCATED.
THAT'S WHAT PROMPTED THE DESIGN
OF THIS, AND IT WAS HOW IT
ORIGINALLY WAS DESIGNED.
THERE'S SOME PUBLICATIONS ON IT.
I WISH I WOULD HAVE PUT THEM IN
THE SLIDE PRESENTATION.
I CAN SHARE THEM IN THE CHAT.
INITIAL PROGRAM WAS PROJECT LEAD
PROGRAM DEVELOPED IN
COLLABORATION WITH SOME
SCIENTISTS, AND RESEARCHERS, KAY
DICKERSON, ROBERT MILLIKEN, A
NUMBER OF OTHERS ACTUALLY.
AS WELL AS ADVOCATES.
THEY FIRST CAME TOGETHER IN A
MEETING TO IDENTIFY WHAT ARE THE
KEY COMPETENCIES THAT THIS
TRAINING PROGRAM SHOULD
ENCOMPASS.
AND THEN A GROUP OF FACULTY AND
INSTRUCTIONAL DESIGNER, MOLLY
MEADE, DEVELOPED THE KEY
COMPONENTS, DEVELOPED
ITERATIVELY AND UPDATED OVER THE
FIRST FOUR YEARS, IN THE VERY
BEGINNING DAYS OF PROJECT LEAD
WE ACTUALLY OFFERED IT FOUR
TIMES A YEAR.
IN DIFFERENT PARTS OF THE
COUNTRY.
NOW WE ONLY OFFER IT ONCE A
YEAR.
BUT IT WAS UPDATED ITERATIVELY
AND THEY ACTUALLY DID AN
EVALUATION TO EXPLORE THE
LEARNING OF THE LEAD GRADS AND
WHAT LEAD GRADS -- HOW THEY
UTILIZED THE TRAINING.
AS I SAY, THIS IS PUBLISHED,
I'LL PUT A LINK INTO THE CHAT
WHEN I'M DONE HERE, BUT A LITTLE
BIT ABOUT THE PROGRAM ITSELF, AS
I MENTIONED, WHEN IT WAS
DEVELOPED IT WAS DEVELOPED WITH
ADULT LEARNING PRINCIPLES TO
MAKE IT ACCESSIBLE TO THE LAY
AUDIENCE THAT IT SERVED.
IT'S BASICALLY -- WHAT THE
PROGRAM OFFERS ARE ONE-HOUR
LECTURES, ONE AND A HALF TO ONE
HOUR LECTURES BY FACULTY,
RENOWNED RESEARCHERS AND
SCIENTISTS, AND THAT PROVIDES
THE PRIMARY CONTENT THAT THEY
ARE LEARNING.
AND THEN ALL OF THE LECTURES ARE
INTERSPERSED WITH MULTIPLE SMALL
GROUPS, STUDY GROUP SESSIONS,
WHERE THE CONTENT IS FACILITATED
BY THE PROJECT LEAD -- THE
MENTORS THAT ARE PARTICIPATING.
WE BRING FACULTY AND POSTDOCS
INTO THE ROOMS TO HELP WITH
CLARIFICATION.
IT'S PLENTY TO BE -- MEANT TO
BE A TIME TO WALK THROUGH THE
KEY CONTENT, THEY DO CASE STUDY
ANALYSES, EVEN GROUP PROJECTS.
THE INSTITUTE CULMINATES WITH
EACH OF THE GROUPS DOING A
PROJECT THAT THEY PRESENT OUT TO
THE LARGER GROUP OF
PARTICIPANTS.
AND I SHOULD ALSO NOTE THAT
THERE'S A LOT OF WORK THAT THEY
HAVE TO DO IN ADVANCE BEFORE
THEY COME TO LEAD SO THERE'S
SOME PRE-WORK THEY NEED TO DO.
THAT'S DONE OVER THE -- IT'S
PROBABLY FOUR TO SIX HOURS WORTH
OF WORK READING THAT THEY HAVE
TO DO BEFORE THEY COME TO LEAD.
AND THEN I WILL SAY ONE THING, I
DIDN'T PRESENT A SLIDE ON THIS,
BUT IN TERMS OF HOW WE SELECT
OUR ADVOCATES, AGAIN, I SAID
THAT WE BRING BETWEEN -- USUALLY
IT'S BEEN 40 TO 50.
THIS YEAR BECAUSE OF THE NEED
FOR SOCIAL DISTANCING WE'LL
PROBABLY LIMIT TO 30 FOR EACH
SESSION, A COMPETITIVE
APPLICATION PROCESS.
WE PROMOTE IT BROADLY.
WE DON'T HAVE TO SPEND A LOT OF
TIME WITH RECRUITMENT.
APPLICANTS HAVE TO COMPLETE AN
APPLICATION, WE TRYING TO
RECRUIT MOTIVATED APPLICANTS.
COURSE WORK IS DEMANDING.
WE WANT TO PICK PEOPLE
INTERESTED IN PARTICIPATING IN
RESEARCH AND WHO WILL GO ON AND
CONTINUE THEIR ADVOCACY WORK.
WE DEFINITELY AIM FOR VERY
DIVERSE POPULATION OF
INDIVIDUALS TO COME TO THIS.
AND THE APPLICANTS NEED TO
DEMONSTRATE THEY HAVE EXPERIENCE
IN ADVOCACY, AND ALSO AS I SAY
AN INTEREST IN MEDICAL RESEARCH
BEFORE WE WILL SELECT THEM.
LET'S SEE.
NEXT SLIDE.
SO THIS JUST HIGHLIGHTS A LITTLE
BIT ABOUT WHAT THE ADVOCATES WHO
GO THROUGH PROJECT LEAD DO.
WE TRAINED OVER 2500 LEAD GRADS
OVER THE YEARS FROM ALL OF THE
STATES AND FROM ACTUALLY MANY
COUNTRIES.
IN FACT AT ONE POINT HAD AN
INTERNATIONAL PROJECT LEAD, WENT
TO A VARIETY OF COUNTRIES TO
DELIVER THE CONTENT, WHICH IS
LOGISTICALLY VERY DIFFICULT.
RESOURCE, THEY SERVE AS
RESOURCES IN THE LOCAL
COMMUNITIES, AGAIN THAT'S WHAT
ADVOCATES OFTEN DO.
THEY ARE BRINGING BACK
INFORMATION TO THEIR
CONSTITUENCIES, THEY SERVE ON
SCIENTIFIC PEER REVIEW PANELS,
PARTICIPATE IN CLINICAL TRIALS,
NBCC'S WHICH WE RUN, SERVE ON
NAGS NATIONAL POLICY COMMITTEES
SHAPING THE AGENDA CHANGING THE
BREAST CANCER CONVERSATION AND
FOCUS.
NEXT SLIDE.
THIS IS -- I WON'T DIVE IN TOO
DEEPLY BUT THESE ARE TWO
EXAMPLES OF SOME OF THE PRIMARY
AREAS THAT ADVOCATES WHO GO
THROUGH PROJECT LEAD GET
INVOLVED WITH, SO DEPARTMENT OF
DEFENSE BREAST CANCER RESEARCH
PROGRAM WHICH WAS THE FIRST OF
ITS KIND IN THE DoD PROGRAM
AND WAS BROUGHT ABOUT BY NBCC
ADVOCACY, SOMETHING THAT ALSO
FROM ITS ONSET REALLY INVOLVED
ADVOCATES IN THE PROCESS.
ADVOCATES ARE ON THE INTEGRATION
PANEL, AND PEER REVIEW PANELS.
THEY PARTICIPATE AND DO PEER
REVIEW AND SO THAT IS PROBABLY
ONE OF THE MOST COMMON THINGS
THAT THE ADVOCATES GET INVOLVED
WITH.
THERE ARE AT LEAST 100 TO 150
ADVOCATES CALLED TO DUTY, IF YOU
WILL FOR THE BREAST CANCER
RESEARCH PROGRAM EACH YEAR.
NBCC ADVOCATES ARE A PRIME
SOURCE OF PATIENT ADVOCATES
INVOLVED.
THE OTHER THING ADVOCATES ARE
INVOLVED WITH IS OUR ARTEMIS
PROJECT, STARTED IN 2010, THIS
INNOVATIVE MISSION-DRIVEN
APPROACH THAT INVOLVES THESE
STRATEGIC SUMMITS, WORKSHOPS.
I JUST CAME BACK FROM ARTEMIS
THIS WEEK.
WHAT WE DID, IT WAS LAUNCHED BY
ADVOCATES, RUN BY ADVOCATES, BUT
INVOLVES A BROAD COLLABORATION
OF RESEARCHERS, SCIENTISTS,
INDUSTRY, THE GOVERNMENT, IN
FACT, WHO COME TOGETHER AND
STRATEGIZE ON -- LED BY
ADVOCATES, WHAT ARE STRATEGIES
FOR PRIMARY PREVENTION,
PREVENTION OF METASTASES, AND I
WILL SAY THAT ADVOCATE
INVOLVEMENT IN THIS PROJECT HAS
BEEN REALLY TRANSFORMATIVE.
WE'VE SEEN SO MANY DIFFERENT
RESEARCH COLLABORATIONS, ALL
THAT INVOLVE ADVOCATES, IN THOSE
RESEARCH COLLABORATIONS COME OUT
OF ARTEMIS, ALSO LOOKING TO
ADVANCE PHASE 1 VACCINE TRIAL.
THAT ALL CAME ABOUT BY ADVOCATES
ASKING THE QUESTION, CAN THERE
BE A VACCINE TO PREVENT BREAST
CANCER?
IN THE BEGINNING MOST OF THE
SCIENTISTS AND RESEARCHERS
LAUGHED AT THE IDEA, BUT WE ARE
ACTUALLY NOW IN A PHASE --
GEARING FOR A PHASE 1 TRIAL AND
WORKING WITH THE NCI PREVENT
PROGRAM ON THAT.
THESE ARE ALL ADVOCATE-DRIVEN
ACTIVITIES.
I WANTED TO SHARE THOSE EXAMPLES
OF HOW ADVOCATES GET INVOLVED.
THIS IS PERHAPS MY LAST SLIDE.
THERE ARE A NUMBER OF
CHALLENGES.
WE'VE HEARD FROM OUR TWO
PREVIOUS SPEAKERS A LOT OF
TRAINING PROGRAMS ARE VIRTUAL.
BECAUSE THEY ARE MUCH MORE COST
EFFECTIVE.
WE REALLY SEE THE VALUE OF
ENGAGING ADVOCATES IN PERSON AND
GIVING THEM -- IT'S A REALLY
SPECIAL OPPORTUNITY WHEN THEY
COME TOGETHER WITH A SHARED
HISTORY, AND SHARED GOAL, TO
PICK UP THAT TRAINING.
SO THE MAJOR CHALLENGE FOR US IS
THE COST OF THAT PROGRAM WHICH
IS NOT INSIGNIFICANT.
WE'VE MANAGED FOR I GUESS MORE
THAN 25 YEARS TO BE ABLE TO
OFFER IT.
BUT THERE'S ALWAYS EVERY YEAR
TRYING TO MAKE SURE THAT WE'RE
ABLE TO RAISE THE FUNDS TO COVER
THE COST OF THAT PROGRAM, WHICH
COME LARGELY FROM OUR MAJOR
DONORS.
WE ATTEMPT TO -- WE HAVE TO KEEP
THE PROGRAM CURRENT BUT
FORTUNATELY WE WORK WITH OUR
FACULTY WHO COME BACK YEAR AFTER
YEAR, THEY HELP TO KEEP THAT
CONTENT CURRENT.
RECRUITING AND IDENTIFYING
ADVOCATES, THAT'S NOT AN
INSIGNIFICANT TASK BECAUSE WE
ONLY HAVE, YOU KNOW, 40 OR 50
SPOTS.
SO WE'RE TRYING TO EVALUATE THEM
FOR WHO ARE THE PEOPLE WHO ARE
GOING TO STICK THROUGH THIS AND
REALLY WANT TO BE PART OF
ADVOCACY.
AND THEN I THINK ONE OF THE
BIGGER CHALLENGES IS PROVIDING
OPPORTUNITIES THEN TO THOSE
ADVOCATES.
WE TRY TO DO THAT.
AS I SAY, DEPARTMENT OF DEFENSE
BREAST CANCER RESEARCH PROGRAM
IS ONE PLACE PEOPLE FUNNEL INTO
VERY QUICKLY AFTER PROJECT LEAD.
BUT WE DON'T HAVE ANY FORMAL
MECHANISMS IN PLACE AT THIS
POINT TO REALLY CONNECT
ADVOCATES WHO ARE SO EAGER,
ESPECIALLY AFTER THEY LEAVE
PROJECT LEAD, TO -- WHAT ARE
THOSE OPPORTUNITIES?
WE'RE STARTING TO SEE MORE AND
MORE RESEARCHERS ENGAGING WITH
ADVOCATES, AND SO THAT'S
ENCOURAGING.
AND WE TRY TO CONNECT ADVOCATES
WHEN PEOPLE REACH OUT TO US
LOOKING FOR THEM BUT THAT'S ONE
OF THE BIGGER CHALLENGES THAT WE
HAVE AS WELL.
I THINK WITH THAT I'LL STOP SO
WE CAN OPEN UP TO LARGER
DISCUSSION.
>> THREE EXCELLENT PROGRAMS OF
PRESENTATION.
A LOT OF BLOOD, SWEAT AND TEARS
ARE PUT INTO THE PROGRAMS.
WE APPRECIATE THE WORK YOU'RE
DOING.
I'LL OPEN UP TO QUESTIONS FROM
THE GROUP.
I'LL START BY ASKING, FOR YOUR
PROGRAMS, I'LL ASK EACH OF THE
PANELISTS THE SAME QUESTION,
WHICH IS IF SOMEONE WERE
THINKING ABOUT STARTING TO TRAIN
ADVOCATES, WHAT WOULD BE YOUR
ADVICE TO THEM?
I'LL PICK ON RYAN AND ASK IF HE
MIGHT KICK US OFF WITH THAT.
>> HAPPY TO.
PICK ON ME ANYTIME.
WELL, I WOULD SAY LIKE NOT
REINVENT THE WHEEL.
DO A LANDSCAPE ANALYSIS OF
WHAT'S OUT THERE, WHAT THE NEED
ARE YOU'RE HEARING FROM YOUR
ADVOCATES.
WE ALL REPRESENT DIFFERENT
ASPECTS OF THE ADVOCACY MANATEE.
COMMUNITY.
WE PARTNERED.
YOU ALREADY HAD AN EXCEPTIONAL
ADVOCACY TRAINING AND
RECRUITMENT, ALL THOSE THINGS.
YOU NEEDED ONE COMPONENT,
PROGRESS FOR PATIENTS, I WOULD
ENCOURAGE AS YOU'RE DEVELOPING
PROGRAMS MAKE THEM KNOWN TO
PEOPLE BECAUSE AS WE MADE IT
KNOWN THROUGH THE DEVELOPMENT
PROS ELSE, IT MADE US CHANGE A
LITTLE BIT OF HOW WE'RE
CONSTRUCTING BASED ON WHAT WAS
ALREADY OUT THERE.
LESSONS LEARNED THAT OTHERRED A
VOW INDICATES -- ADVOCATES HAD
GONE THROUGH BEFORE WE DID AT
THEIR DISPOSAL.
>> I'M ADD AS WELL, THINKING
ABOUT WHAT YOU'RE ANGLE IS.
CERTAINLY WHEN WE STARTED OUR
PROGRAM WE KNEW OF THE FRIENDS
PROGRAM, FOR EXAMPLE, AND IT'S A
GREAT RESOURCE AND SAW IN
CHILDHOOD CANCER SPACE THERE
WASN'T SOMETHING SPECIFIC AND
FELT THE SPECIFIC SCIENCE BEHIND
IT, RESEARCH NEEDS, TREATMENT,
REALLY NEEDED THAT TAILORED
VOICE.
THAT WAS THE ANGLE HOW DO WE GET
SURVIVORS, PARENTS, BETTER
EQUIPPED, THAT HELPED SHAPE THE
OVERALL CURRICULUM WE BUILT AND
HOW WE ROLLED IT OUT AS WELL.
>> I DON'T KNOW THAT I HAVE MUCH
MORE TO ADD TO THAT BUT I AGREE
WITH RYAN, DEFINITELY DO A
LANDSCAPE, CHECK THE LAND SCAN
OF WHAT'S OUT THERE, WHAT'S
AVAILABLE.
THERE ARE MANY EMERGING PROGRAMS
IN CANCER-SPECIFIC OR
DISEASE-SPECIFIC GROUPS.
PROJECT LEAD TOOK A LONG TIME TO
DEVELOP BUT IT'S GONE THROUGH 25
YEARS-PLUS, RUNNING, YOU CAN
LEARN FROM OTHER GROUPS WHO HAVE
DONE THESE TYPES OF PROGRAMS.
SO I WOULD DEFINITELY ENCOURAGE
THAT.
>> IT'S IMPORTANT TO BE
FLEXIBLE, JUST BECAUSE ONE OF
THE MAJOR BARRIERS WE FACED WAS
TRYING TO DEVELOP A CURRICULUM
DURING THE PANDEMIC, AND, YOU
KNOW, ORIGINALLY THE CLINICIANS
WERE GOING TO BE DOING A LOT OF
HEAVY LIFTING WITH WRITING BUT
COVID CAME AND THEY
UNDERSTANDABLY HAD TO TURN THEIR
ATTENTION TO PATIENT CARE.
AND SO WE HAD TO BE CREATIVE
ABOUT IF WE WERE TO WAIT UNTIL
COVID ENDED OR UNTIL THEY HAD
FREE TIME, THE PROGRAM WOULDN'T
BE DONE STILL AT THIS POINT.
SO JUST LEARNING HOW TO WORK
WITH YOUR COMMITTEE, BEING GOOD
ABOUT COMMITTEE SELECTION, AND
FIGURING OUT WAYS TO USE ZOOM,
IT REALLY REQUIRED A LOT OF
FLEXIBILITY.
>> ANNIE?
VICKIE HAD HER HAND UP FIRST.
>> SORRY.
THANK YOU.
>> I REALLY LIKED THE WAY
MICHELE -- THE WAY THE EARLY
BULLETS TALKED ABOUT THE PATIENT
ADVOCATE WHO HAS HAD EXPERIENCE
NOT REPLACEMENT ADVOCATING FOR
THEIR OWN EXPERIENCE OR
THEMSELVES PERSONALLY BUT FOR
THE LARGER COMMUNITY AND HAVING
THE EXPECTATION SPOKEN THAT YOU
WERE REPORTING BACK TO SOME
GROUP.
I JUST WONDERED, HOW DO YOU
TEACH THAT?
HOW DO YOU KIND OF GUARANTEE
THAT?
IN THE COMMUNITY THAT I'M IN,
THE PEOPLE WHO ARE THE MOST
PASSIONATE ARE ALSO THE ONES
MOST CONNECTED TO THEIR OWN
STORY OFTENTIMES, AND I ASSUME
THAT MEANS AND SARAH AND
PROBABLY RYAN HAVE SOMETHING TO
SAY ABOUT THIS AS WELL.
>> IT'S A GOOD QUESTION.
I WILL TELL YOU ONE OF THE FIRST
THINGS THAT ADVOCATES ARE TOLD,
WHEN THEY -- THE PROGRAM IS
FACILITATED BY A WONDERFUL
FACILITATOR, SO THE FIRST
THING -- ONE OF THE FIRST THINGS
THEY HEAR WHEN THEY COME TO THE
PROGRAM IS THIS IS NOT ABOUT
YOUR DISEASE.
BECAUSE YOU GET A LOT OF PEOPLE,
I'VE SEEN IT OVER THE YEARS,
WILL RAISE THEIR HAND AND ASK A
QUESTION, WHAT ABOUT THIS?
SHE HAD TRIPLE NEGATIVE BREAST
CANCER, INSTILLED VERY EARLY ON
IN THE TRAINING THAT THIS IS NOT
ABOUT YOUR BREAST CANCER.
AND IT COMES WITH THE ADVOCACY
TRAINING THEY RECEIVE.
IT'S NOT JUST SCIENCE AND
EDUCATION.
I THINK YOU HAVE TO BUILD THAT.
I'M NOT SAYING THERE'S NOT A
PLACE FOR INDIVIDUAL PERSONAL
EXPERIENCES.
BUT WHEN YOU'RE REPRESENTING A
CONSTITUENCY IT HAS TO BE IN THE
BROADER CONTEXT.
IT'S JUST SOMETHING THAT WE HAD
TO CONSTANTLY REINSTILL IN
ADVOCATES AND MODEL THAT IN OUR
OWN ADVOCACY.
>> BEFORE I TURN OVER TO ANNIE'S
QUESTION I WANT TO PIGGYBACK ON
WHAT MICHELE SAID.
WE HAVE A RESEARCH EFFICACY
PROGRAM AS WELL.
THAT IS A VERY HARD THING TO DO
TO SWITCH FROM I TO WE.
AND SO I THINK THERE IS A LOT OF
VALUE IN THOSE IN-PERSON
MEETINGS BECAUSE YOU CAN TRULY
HAVE THEM PRACTICE.
I KNOW THAT SOUNDS SOMETIMES
LIKE YOU'RE PUTTING THEM ON THE
SPOT BUT WE PUT THEM ON THE SPOT
TO PRACTICE RESPONDING TO
QUESTIONS, PRACTICE ENGAGING
WITH SCIENTISTS, TO WHAT NANCY
WAS TALKING ABOUT EARLIER ABOUT
THE RESEARCHERS AND HAVING SORT
OF THAT IN-PERSON WITH
RESEARCHERS, IT GOES BOTH WAYS.
RESEARCHERS HAVE TO PRACTICE HOW
THEY TALK TO PATIENTS.
AND PATIENTS HAVE TO PRACTICE
TALKING TO RESEARCHERS.
AND WE HAD A GREAT MENTOR ONCE,
EVERY TIME A PATIENT WOULD SAY
"I" IN THE MIDDLE OF RESPONDING
SHE WOULD STOP THEM AND THEY
WOULD HAVE TO RESTART.
IT MAKES A WORLD OF DIFFERENCE
GETTING AN OPPORTUNITY TO
PRACTICE, WITHOUT JUDGMENT,
WITHOUT BEING ON A PANEL IN
FRONT OF THE NCI DIRECTOR.
HAVING THAT FACE TO FACE IS SO
IMPORTANT.
ANNIE?
>> THANK YOU FOR SHARING YOUR
TREMENDOUS EFFORTS TO EMPOWER
AROUND EDUCATE THE NEXT
GENERATION OF -- CONTINUE TO
EMPOWER ADVOCATES.
WHEN I WAS GETTING SCREENED, I
WAS TOLD YOU KNOW YOU'RE READY
WHEN YOU'RE READY TO TELL OUR
STORY, INSTEAD OF TELLING MY
STORY.
THESE SOFT SKILLS ARE HARDER TO
PASS ON.
I'VE LEARNED THROUGH MENTORSHIP.
I GUESS, YOU KNOW, WE'VE GOT A
TWO-HOUR PROGRAM, WE'VE GOT FOUR
HOURS SELF-STUDY, THE SIX-DAY
THING.
ONE OF THE THINGS I'VE BEEN
TRYING TO DO IS TO FIND THE
MISSING VOICES.
SO PEOPLE WHO MIGHT NOT BE
LOCATED BY MAJOR CANCER CENTERS
OR MAY BE MORE RURAL SO YOU
DON'T HAVE LIKE ON-SITE LOCAL
MENTOR TO HELP WALK THEM THROUGH
OR, YOU KNOW, MAYBE THEIR
EDUCATION, THEIR HEALTH LITERACY
MIGHT BE LOWER.
BUT TRYING TO BRING MISSING
VOICES TO THE TABLE, WHAT WOULD
YOU SAY IS LIKE THE BARE MINIMUM
THAT A NEW ADVOCATE WOULD NEED
AND HOW MUCH TIME TO INVEST
BECAUSE, YOU KNOW, YOU HAVE
SOMEBODY WHO THIS IS KIND OF A
NEW CONCEPT, SCIENCE, CANCER,
TALKING TO RESEARCHERS, AND THEN
THEY INVEST SOME TIME AND THEN
THEY HATE IT.
OR, YOU KNOW, IT'S NOT A GOOD
FIT.
WHAT WOULD YOU RECOMMEND AS A
WAY TO HELP SCREEN THAT OR WHAT
IS THE BARE MINIMUM YOU PUT
SOMEONE OUT THE DOOR WITH?
>> SO, WHEN YOU SAY "PUT THEM
OUT THE DOOR WITH," YOU MEAN
ALLOW THEM TO REPRESENT YOU?
>> WELL, YOU KNOW, SOMETIMES
BEING IN THE RESEARCH ADVOCATE
SPACE WHAT I FIND IS A LOT OF
RESEARCHERS LIKE THE RESEARCH
ADVOCATES THEY ARE WORKING WITH,
IT'S LIKE, NO, NO, NO, YOU'RE
WORKING ON THIS OTHER PROJECT.
THERE'S PROBABLY A DIFFERENT
VOICE YOU NEED THAN MINE, RIGHT?
YOU'RE TRYING TO FIND THE RIGHT
ADVOCATE COMING FROM A SPACE
WHERE WE DON'T HAVE -- I'LL BE
RECOMMENDING A LOT OF THESE
THINGS FOR PEOPLE TO DO THEIR
SELF-STUDY BUT IF I'M GOING TO
RECOMMEND SOMEONE BECAUSE
THERE'S HEAVY LIFTING, RIGHT IN
THE THERE IS HEAVY LIFTING IN
THE RESEARCH ADVOCATE ROLES.
THERE'S NOT ALWAYS -- MOST OF
THE TIME THERE'S NOT
COMPENSATION.
AND A LOT LOT OF TIMES THERE'S
CONFIDENTIALITY.
YOU CAN'T EVEN PUT IT ON
TWITTER, RIGHT?
THERE'S A LOT OF WORK WITH MAYBE
NOT A LOT OF PUBLIC REWARD.
SOME OF THE PEOPLE I KNOW, I'VE
MENTORED LOVE IT, CAN'T GET
ENOUGH OF IT.
YOU KNOW WHO THEY ARE.
EVERYONE HERE IS PROBABLY ONE OF
THOSE.
AGAIN, TRYING TO RECRUIT THE
VOICES THAT ARE MISSING, PEOPLE
WHO SHOULD BE AT THE TABLE
TRYING TO NURTURE THIS TYPE OF
THING, I'LL GIVE AN EXAMPLE.
IN OUR WORLD WE'VE GOT A LOT OF
PEOPLE TURNING TO COMPLEMENTARY
MEDICINE AND SUPPLEMENTS, AND
NOT EVIDENCE-BASED STUFF.
LIKE, YOU KNOW, LIKE HOW THIS IS
DIFFERENT, YOU KNOW, THIS IS
EVIDENCE-BASED MEDICINE, RIGHT?
YOU KNOW, WE'VE GOT RESEARCH
ADVOCACY NETWORK, IT'S A LOT.
WHERE IS THE BAR?
YOU KNOW, I KNOW -- I GUESS --
YOU KNOW, WHAT'S YOUR COMFORT
LEVEL IN SENDING SOMEONE OUT?
IT'S NOT GOING TO HAPPEN IN OUR
COMMUNITY BECAUSE WE JUST DON'T
HAVE THE MONEY FOR IT UNLESS
THERE WERE MUTATION CARRIER CAN
ALSO GO TO GET A SCHOLARSHIP,
BUT --
>> EVEN WITH PROJECT LEAD, I
THINK IT DEPENDS ON WHAT --
THERE ARE A COUPLE THINGS.
FIRST OF ALL, I'LL SAY THAT WE
HAVE -- WE RECRUIT BROADLY,
FINANCE, WHERE YOU LIVE DOES NOT
INFLUENCE WHETHER OR NOT YOU GET
INTO IT.
IT'S ALL SCHOLARSHIP BASED.
SO IT'S HARD THOUGH FOR YOUNGER
WOMEN WHO HAVE FAMILIES TO LEAVE
FOR A WEEK.
BUT SO WE DEFINITELY TRY TO GET
THOSE VOICES.
WE TRY VERY HARD TO MAKE SURE
THAT WE'RE REPRESENTING THE
DIVERSITY OF BREAST CANCER.
AND EVEN MEN WHO COME TO PROJECT
LEAD.
IN TERMS OF AFTER PROJECT LEAD,
WE'RE NOT READY TO SEND THEM ON
THEIR WAY TO DO THIS, THAT, AND
THE OTHER.
FOR US, IT DEPENDS ON THE
ACTIVITY.
YOU KNOW, THERE ARE MANY
DIFFERENT ACTIVITIES.
OTHERS WILL PROBABLY SAY THE
SAME, BUT WE GET REQUESTS FOR
ALL KINDS OF THINGS.
THERE ARE ONLY -- DEPENDING ON
WHAT THE ACTIVITY IS, WE -- YOU
KNOW, WE HAVE TO FEEL
COMFORTABLE WITH THE ADVOCATE.
AGAIN, THEY ARE GOING TO BE
SPEAKING AS A CONSTITUENCY OF
ADVOCATES, NOT ABOUT THEMSELVES.
IT'S NOT THEIR OWN KIND OF --
YOU KNOW, IT'S HARD TO PUT
QUANTITATIVELY DETERMINE THAT.
BUT IT'S ABOUT WHO IS
PARTICIPATING.
WHO IS ACTIVELY ENGAGING.
LIKE IN OUR ONGOING TRAINING AND
OUR WEBINARS, WHO IS INVOLVED
AND COMES TO OUR SUMMIT AND DOES
SOME OF THE OTHER ACTIVITIES.
THAT'S HOW WE GET A BETTER GRASP
OF WHEN SOMEBODY'S REALLY READY
TO PARTICIPATE.
AND THERE ARE MANY THAT COME TO
PROJECT LEAD WHO ARE INCREDIBLY
SHARP AND SAVVY.
THEY DON'T NECESSARILY STAY
CONNECTED WITH NBCC.
THEY GO OUT AND GET INVOLVED.
AND THAT'S FINE TOO.
BUT, YOU KNOW, I DON'T KNOW IF
THAT HELPS.
I DON'T KNOW WHAT OTHERS HAVE TO
SAY.
>> YEAH, I WOULD SAY IT'S REALLY
LIKE WE KIND OF LET THE
INDIVIDUAL DECIDE WHEN THEY ARE
READY.
AND WHAT THEY ARE READY FOR.
I DON'T THINK WE PUT -- WE'VE
NEVER TRIED HONESTLY TO PUT A
BAR.
THE ONLY BARS AND GUIDELINES WE
DO IS IF THE OPPORTUNITY, SAY,
REQUIRES OR IS ASKING FOR
SOMEONE THAT'S BEEN THROUGH A
CLINICAL TRIAL THEMSELVES,
THAT'S WHERE I SLIGHTLY DISAGREE
WITH SOME OF THE CONVERSATION
AROUND REMOVING THE I FROM THE
CONVERSATION.
OFTEN TIMES THE I IN THE
CONVERSATION IS REALLY WHAT
CHANGES THE TRAJECTORY OF A
CLINICAL TRIAL THAT'S HAPPENING.
IF IT'S THIS DID NOT WORK FOR ME
DURING THIS TRIAL, IT'S AN I
STATEMENT, BUT THAT CAN CHANGE
THE NEXT LEVEL OF TRIAL TO BE
MORE ADAPTIVE AND MORE REALISTIC
FOR FUTURE PATIENTS.
SO I THINK THERE IS A BALANCE
THERE.
I THINK THE INDIVIDUAL AT LEAST
FOR US, FOR THE OPPORTUNITIES WE
MATCH-MAKE AND LIKE TO DO AND
STRIVE TO DO IS BE BRUTALLY
HONEST AND LET THE PERSON
PRE-DETERMINE THEM.
>> FOR OUR PROGRAM BECAUSE WE'RE
SO NEW, INVITATION ONLY, WE
LOOKED AT WHO, IT'S FOUR HOURS,
MATERIAL CAN BE QUITE INVOLVED.
AND SO MAKING SURE WE WERE
STARTING WITH A GROUP OF FOLKS
THAT WERE ALREADY INTERESTED IN
RESEARCH, FOR A LONG TIME, AND
SO THE HOPE IS THAT WE HAVE
OTHER COHORTS OF FOLKS THAT
WE'LL BE REACHING BUT OUR
LONG-TERM GOAL IS TO PUT THIS ON
THE WEBSITE, GET FREE ACCESS TO
ANYBODY IN THE COMMUNITY.
THE CAVEAT IS WE THEN LOSE A
LITTLE BIT OF CONTROL OF WHO WE
CAN RECOMMEND MOVING FORWARD, IF
THEY ARE A GRADUATE OF THE OUR
PROGRAM WE KNOW THEM GOING INTO
IT, WE KNOW THEY ARE ROCK STARS
THROUGH AND THROUGH AND HAD
EXTRA TRAINING WHICH MAKE THEM
EVEN MORE READY TO REPRESENT THE
COMMUNITY IN MORE FORMAL
SETTING, WHEN IT'S MORE PUBLICLY
AVAILABLE WE HOPE TO MAKE IT,
THAT COULD IMPACT WHO WE REFER
TO ANY NCI MANUAL OR TO DoD OR
RESEARCHES, THINGS LIKE THAT.
IT'S A FINE LIKE WE'RE WALKING
BUT TO THE POINT ALREADY MADE,
WE FOUND THAT PEOPLE HAVE BEEN
WITH US FOR A WHILE.
THEY ARE PROBABLY READY TO DO
MORE.
PEOPLE ARE HUNGRY FOR THE NEXT
STEP, WE'RE HAPPY TO GIVE THEM
SOMETHING NEW TO TRY OUT.
THANK YOU SO MUCH.
>> DO WE HAVE ANY MORE
QUESTIONS?
YES, VICKIE?
>> I WAS GOING TO SAY ONE THING
THAT THE CHILDHOOD CANCER
COMMUNITY HAS THAT'S A LITTLE
BIT DIFFERENT THAT WE HAVE TO BE
AWARE OF, I'VE TALKED TO SARAH
ABOUT THIS IN THE PAST, BUT IN
MOST SITUATIONS YOU DON'T HAVE
THE BEREAVED ELEMENT AS A
POTENTIAL PART OF THE ADVOCATE
COMMUNITY BECAUSE -- MAYBE YOU
DO HAVE SPOUSES THAT TRAINED TO
BECOME RESEARCH ADVOCATES IN
YOUR PROGRAMS BUT IT REALLY IS A
RATHER LARGE -- A LOT OF THE
VERY -- ADVOCATES WHO ARE
INTERESTED IN ADVOCATING ARE
AFTER THEIR CHILDREN HAVE DIED
AND THEY BURN PRETTY HOT FOR A
WHILE.
IT'S JUST ANOTHER CONSIDERATION
THAT I THINK ST BALDRICK'S HAS
BEEN GUARDING AGAINST BY USING
THE INVITATION BUT IT'S
SOMETHING THAT WE HAVE TO BE
ESPECIALLY AWARE OF.
>> THAT'S A GREAT POINT, VICKIE.
IT'S INTERESTING THAT ACTUALLY
40% OF OUR GRADUATES ARE
BEREAVED PARENTS WHO LOST A
CHILD TO CANCER.
AND WHO WANT SO MUCH TO BE
INVOLVED AND PREVENT OTHER
FAMILIES FROM EXPERIENCING THE
SAME LOSS THAT THEY DID.
AND REALLY THEIR PASSION IS JUST
UNPARALLELED.
AND SO I WAS REALLY SURPRISED
AND INTERESTED BY THE FACT HOW
REVVED UP AND GUNG HO OUR
BEREAVED PARENTS ARE TO
PARTICIPATE IN THIS.
>> THAT'S THE OTHER PIECE THAT'S
INTERESTING FROM THE CHILDHOOD
CANCER PERSPECTIVE.
OFTENTIMES UNLESS THEY ARE
SURVIVORS AND OLDER, PEOPLE
REPRESENTING THE COMMUNITY ON
THESE PANELS ARE NOT THE
PATIENTS THEMSELVES.
AND SO IT'S EITHER THE BEREAVED
PARENT OR CAREGIVER OR
SOMETHING, SOMEONE RELATED BUT
NOT DIRECTLY NECESSARILY, THAT'S
JUST ANOTHER NUANCE WHY WE
THOUGHT THE PROGRAM WAS SO
IMPORTANT TO HAVE BECAUSE THAT
PERSPECTIVE IS DIFFERENT AND
WHAT YOU'RE WITNESSING VERSUS
EXPERIENCING YOURSELF, BUT WE
ALSO HAVE TRIED TO RECRUIT SOME
OF THE SURVIVORS IN OUR
COMMUNITY AS WHOLE HAVE BEEN
INVOLVED FOR A LONG TIME TO MAKE
SURE WE'RE ROUNDING THAT OUT OF
HAVING THAT PARENT PERSPECTIVE,
BEREAVED PART PERSPECTIVE,
CHILDHOOD CANCER SURVIVOR
PERSPECTIVE, THE TEEN AND YOUNG
ADULT SURVIVOR PERSPECTIVE, ALL
OF THAT INTERMIXED WHICH HAS
MADE FOR, YOU KNOW, A LONGER
PROGRAM IN A CERTAIN WAY, BUT
ALSO HOPEFULLY PRODUCING
ADVOCATES TO PROVIDE A NUANCED
PERSPECTIVE WHEN CALLED ON.
>> KEVIN?
>> I APPRECIATE THE OF THIS --
I APPRECIATE THIS TODAY.
IN THE CANCERS WITH NOT GREAT
SURVIVAL RATES MANY TIMES THERE
ARE OFTEN FAMILY MEMBERS OR
SIBLINGS THAT WILL TURN AROUND
AND BE THE ADVOCATE, I'VE SEEN
ABUNDANCE OF THAT IN MY
EXPERIENCE.
BUT I DID WANT TO THANK THE
PRESENTERS TODAY FOR HELPING
OUT.
I'M NOT VERY WELL VERSED IN SUCH
AREAS.
NOT ONLY THE PRESENTERS WITH
GREAT PROGRAMS BUT MY COLLEAGUES
ON THE COMMITTEE WHO KNOW WHO
SOME OF THESE PEOPLE ARE.
AND THEIR ABILITY TO BE VERY
WELL VERSED IN SUCH AREAS.
I GREATLY FOUND THIS VALUABLE.
THANK YOU.
>> I WANT TO THANK OUR PANELISTS
FOR JOINING US AND SHARING THEIR
PROGRAMS.
I THINK IT WAS REALLY VALUABLE
TO BE ABLE TO OUTLINE HOW MUCH
WORK GOES INTO THESE PROGRAMS,
THE CHALLENGES, HOW YOU'VE BEEN
ABLE TO SUSTAIN AND COLLABORATE
WHAT I HEARD ACROSS EVERYTHING
IS RESEARCH ADVOCACY IS SO
IMPORTANT.
THANK YOU FOUR SHARING THE WORK
THAT YOU'RE DOING.
>> THANKS, EVERYONE.
THANKS, ANNUAL GEE. GEE ANJEE.
>> NEXT, WE HAVE CLOSING
REMARKS?
AND VOTES, IS THAT CORRECT?
>> I'M GOING TO TURN IT OVER TO
YOU.
I APPRECIATE ALL THE PANELISTS,
JUST TO DOUBLE BACK ON ANJEE'S
COMMENTS FOR TAKING TIME TO BE
WITH US TODAY AND SORT OF HAVING
AN OPEN DISCUSSION, BECAUSE
TRAINING IS SO IMPORTANT IN THE
ADVOCACY COMMUNITY.
WE'RE LOOKING TO TRAIN THE NEXT
GENERATION AND BRING MORE
DIVERSITY TO OUR RESEARCH
ADVOCACY WORKFORCE.
THESE TRAININGS ARE SORT OF AN
IMPORTANT TOUCH POINT IN THAT
PIPELINE.
THANK YOU BOTH BOARD MEMBERS FOR
YOUR THOUGHTS AND PANELISTSES
FOR YOUR PRESENTATIONS AND FOR
THE DISCUSSION.
AND WITH THAT, ANJEE, WE'LL MOVE
TO OUR LAST SECTION OF TODAY.
WE HAVE SOME ADMINISTRATIVE
ITEMS TO TAKE CARE OF.
APPROVING THE MEETING SUMMARY
FROM THE LAST MEETING.
ANJEE, I'LL TURN THAT OVER TO
YOU TO DO AND CLOSE US OUT.
>> I THINK WE HAVE A MOTION TO
APPROVE THE 84th NCRA MEETING,
I ASK A MEMBER TO MOTION TO
APPROVE AND CALL FOR A MEMBER TO
SECOND.
>> I'LL MOVE.
>> MOTION TO APPROVE.
>> I'LL SECOND.
>> EXCELLENT.
THANK YOU.
THANK YOU, JENNIFER, ANNIE.
AND THEN REALLY WANT TO THANK
YOU, I WANT TO THANK EVERYONE
FOR PARTICIPATING, MAKING
SUGGESTIONS.
WE'VE BEEN REACHING OUT TO
MEMBERS TO SUGGEST SPEAKERS AND
POTENTIAL MEMBERS TO JOIN THE
COUNCIL.
I APPRECIATE YOUR FEEDBACK,
IDEAS, SUGGESTIONS, AS WE START
THINKING ABOUT OUR NEXT MEETING,
IF ADDITIONAL IDEAS COME TO MIND
PLEASE DO SHARE THAT WITH US.
I KNOW AMY AND VINCENT ARE
ALWAYS ON TOP OF EVERYTHING THAT
WE'RE DOING AND TRYING TO CRAFT
AND PULL IN THE DIRECTORS AND
NCI LEADERSHIP TO OUR CALLS THAT
WILL MAKE THE BEST CONNECTIONS
FOR THIS GROUP.
I REALLY THANK YOU FOR YOUR
TIME.
YOU STUCK IT OUT.
THANK YOU FOR BEING ON THE CALL
THE WHOLE TIME.
WE WERE EATING LUNCH AND TRYING
TO KEEP UP WITH EVERYTHING.
REALLY APPRECIATE YOU STAYING
ENGAGE AND ASKING QUESTIONS.
EVERY WHO PRESENTED PREPARED
EXCELLENT PRESENTATIONS, IT
MEANS A LOT FOR US TO BE ENGAGED
AND CONTINUE A CONVERSATION WITH
THEM.
IS THERE ANYTHING ELSE.
>> I HAVE A QUESTION.
>> NO, NO.
>> SURE, VICKIE.
>> ANJEE, GIVEN THAT WE WERE
ABLE TO SEE DR. SHARPLESS TODAY,
IN HIS OFFICE, DO YOU HAVE ANY
SENSE THAT FOR LATER IN 2022
WE'RE GOING TO BE CONVENING IN A
WAY OTHER THAN BY ZOOM OR IS
THAT STILL A PENDING THING?
>> SURE, THANKS, VICKIE.
>> JUST FOR PLANNING.
>> I KNOW THAT WE WILL
CONTINUE -- THAT BOARDS LIKE
THIS WILL CONTINUE TO MEET
VIRTUALLY I THINK THROUGH JULY.
SO IT SEEMS LIKE OUR NEXT --
SUMMER MEETING WILL BE VIRTUAL
AND PERHAPS WILL BE IN PERSON IN
THE FALL.
BUT THAT -- THE GUIDANCE WILL BE
UPDATED THIS SUMMER.
SO I DO KNOW WE'LL KEEP MEETING
VIRTUALLY UNTIL JULY.
>> THANK YOU.
WE'RE ALL ANXIOUS TO KNOW WHEN
WE'LL HAVE A IT IN PERSON BUT I
APPRECIATE EVERYONE STICKING IT
OUT ON ZOOM FOR AN EXTENDED
PERIOD OF TIME AND LOOK FORWARD
TO SEEING EVERYONE ON THE NEXT
CALL AND SEEING IF THERE ARE
PRESSING ISSUES, THOUGHTS,
CHALLENGES THAT WE SHOULD
TACKLE, PLEASE SEND THOSE OVER
TO MYSELF OR AMY, AND WE WILL
DEFINITELY INCLUDE THAT OR TRY
TO INCLUDE THAT ON THE NEXT
AGENDA.
THANK YOU SO MUCH.
>> THANK YOU FOR WALKING US
THROUGH TODAY.
I HAVE A LIST OF ITEMS, AS
ALWAYS WE'LL BE IN TOUCH BEFORE
WE MET THIS SUMMER.
THANK YOU FOR ALL YOU'RE DOING
ON BEHALF OF PATIENTS ACROSS THE
COUNTRY, IT REALLY DOES MATTER.
>> THANK YOU SO MUCH.
>> EVERYONE HAVE A GREAT DAY.
>> TAKE CARE.
>> THANK YOU SO MUCH.