>> OKAY, HI.
I'D LIKE TO ASK AMY WILLIAMS TO
HELP OPEN THE MEETING BEFORE WE
GET STARTED WITH SOME OF OUR
HOUSEKEEPING.
>> SURE.
THANKS SO MUCH, ANNIE.
HI, EVERYONE.
AS YOU ALL KNOW, I'M AMY
WILLIAMS, THE DIRECTOR OF THE
ADD VO KA OADVOCACY OFFICE AT TL
CANCER INSTITUTE.
AS I SAY AT THE TOP OF EACH OF
THESE FSM ACA MEETINGS, THANK
YOU SO MUCH FOR JOINING US TODAY
AND FOR THE WORK THAT YOU DO IN
ADVANCE OF THE MEETING WITH THE
PREREAD AND THE BACKGROUND THAT
WE SEND.
I THINK WE HAVE A TERRIFIC
COUPLE OF HOURS PLANNED FOR US
TODAY.
WE'RE GOING TO START OFF WITH A
LITTLE BIT OF SCIENCE.
WE HAVE TWO SCIENTIFIC ORIENTED
PRESENTATIONS TODAY, ONE ABOUT
CANCER GRAND CHALLENGES, WHICH I
THINK ALMOST ALL OF YOU ARE
FAMILIAR WITH, AND WE ACTUALLY
HAVE SEVERAL NCRA MEMBERS WHO
ARE PARTICIPATING IN THAT
SCIENTIFIC INITIATIVE AND WE'LL
HEAR A LITTLE BIT FROM THEM IN
ADDITION TO OUR SCIENTIFIC
LEADERSHIP.
WE HAVE A LEG UPDATE AS ALWAYS
AND WE'LL HAVE A PRESENTATION
ALSO AROUND SURVIVORSHIP
STANDARDS, AND THEN KIM WILL --
DR. RATHMELL, KIM, WILL BE
JOINING US TO CLOSE OUT THE
MEETING ACTUALLY.
SHE HAD A MEETING DOWN AT THE
WHITE HOUSE TODAY, IT WAS A
CLINICAL TRIALS FORUM, SOME OF
YOU MAY HAVE LISTEN TODAY THAT
THIS MORNING.
ED TO THAT
THIS MORNING, SO THEEL BE
JOSHE'LL BEJOINING US AT THE COF
THAT EVENT.
SO AS ALWAYS, THANK YOU FOR YOUR
EXPERTISE, FOR ALWAYS SHARING
THE COLLECTIVE PATIENT
PERSPECTIVE.
WE KNOW THAT ADVOCATES WEAR
MANY, MANY HATS ON BEHAVE OF
PATIENTS AND THIS IS JUST ONE OF
THEM.
SO THANK YOU SO MUCH FOR ALL
THAT YOU DO, AND ANNIE, LET ME
THANK YOU FOR CHAIRING TODAY'S
MEETING AND FOR WALKING US
THROUGH ALL OF OUR PRESENTAT
PRESENTATIONS.
I WILL TURN IT BACK OVER TO YOU.
>> OKAY.
THANK YOU SO MUCH, AMY.
AND THANK YOU, EVERYBODY, FOR
ATTENDING ON TIME AND ALL THE
PREREAD WORK.
DO WE HAVE QUORUM, AMY?
>> YOU ARE TESTING MY QUICK
COUNTING.
YES.
I BELIEVE THAT WE DO, YEP.
>> OKAY.
SO I NEED TO READ THE OPENING
STATEMENT.
AS COMMITTEE MEMBERS, I WANT TO
REMIND YOU THAT YOU MUST ABSENT
YOURSELVES DURING SPECIFIC
DISCUSSIONS WHENEVER YOUR
PARTICIPATION IN DELIBERATIONS
ON A PARTICULAR PRODUCT, PROGRAM
OR OTHER SPECIFIC MATTER WOULD
CONSTITUTE A CONFLICT OF
INTEREST OR CREATE THE
APPEARANCE OF ONE.
IT IS INCUMBENT UPON YOU TO
ADVISE THE EXECUTIVE SECRETARY,
AMY, AND ABSTAIN FROM ANY
PARTICIPATION IN DISCUSSION OR
ACTION REGARDING THAT MATTER.
IN LIGHT OF THE CURRENT POLICIES
GOVERNING CONFLICT OF INTEREST
BASED ON FINANCIAL HOLDINGS OF
SPECIAL GOVERNMENT EMPLOYEES,
WHICH INCLUDE ALL MEMBERS OF
THIS COMMITTEE, WE MUST DEPEND
ON YOU TO VOLUNTARILY ABSENT
YOURSELF DURING ANY AND ALL
DISCUSSION OF MATTERS THAT COULD
CONCEIVABLY IMPACT THE STATUS OF
THOSE HOLDINGS.
WE TRUST YOUR JUDGMENTS IN THESE
INSTANCES.
BY LAW, A QUORUM OF BOARD
MEMBERS IS REQUIRED FOR EACH
INSTANCE IN WHICH A VOTE OCCURS
IN AN OPEN SESSION.
DURING THIS MEETING, A MINIMUM
OF EIGHT APPOINTED MEMBERS MUST
BE PRESENT TO VOICE THEIR VOTES.
NEW MEMBERS WHO ARE NOT CURRENT
MEMBERS OF ANOTHER NCI ADVISORY
BOARD ARE NOT VOTING UNTIL THEY
HAVE BEEN CLEARED BY THE NCI
ETHICS OFFICE AND OFFICE OF
HUMAN RESOURCES.
AND NOW THE PUBLIC COMMENT
STATEMENT.
MEMBERS OF THE PUBLIC WHO WISH
TO EXPRESS VIEWS REGARDING ANY
ITEMS DISCUSSED DURING THIS
MEETING MAY DO SO BY WRITING
MISS AMY WILLIAMS, EXECUTIVE
SECRETARY, WITHIN 10 DAYS OF THE
MEETING.
ANY WRITTEN STATEMENTS BY
MEMBERS OF THE PUBLIC WILL
RECEIVE CAREFUL CONSIDERATION.
AND SO AGAIN, I THANK YOU ALL
FOR JOINING.
I'M REALLY EXCITED ABOUT THE
MEETING THAT WE HAVE AHEAD.
I'M ESPECIALLY EXCITED TO
INTRODUCE DR. ANDREW KURTZ, WHO
IS THE PROGRAM DIRECTOR OF NCI
CENTER FOR STRATEGIC SCIENTIFIC
INITIATIVES, AND THE CO-LEAD FOR
CANCER GRAND CHALLENGES.
AS YOU MAY KNOW, CANCER GRAND
CHALLENGES IS A PARTNERSHIP WITH
NCI AND CANCER RESEARCH UK TO
ADDRESS MAJOR UNRESOLVED
QUESTIONS IN CANCER.
I BELIEVE DR. SHARP LELESS TALKD
TO US ABOUT IT BACK IN 2020 WHEN
THINGS WERE STILL STARTING UP,
AND I'M REALLY EXCITED THAT TWO
OF OUR BOARD MEMBERS, YELAK BIRU
AND JOYA DELGADO HARRIS, ARE
ALSO RESEARCH ADVOCATE LEADERS
WITHIN THE CANCER GRAND
CHALLENGES, AND WE'LL GET A
CHANCE TO HEAR FROM THEM AS
WELL.
SO DR. CURT, WHENEVER YOU'RE
READY.
THANK YOU FOR BEING WITH US.
>> GREAT, AND THANK YOU SO MUCH.
I REALLY WANT TO THANK THE
MEMBERS OF THE COUNCIL FOR THIS
INVITATION TO JOIN YOU TODAY.
I WANT TO MENTION THAT I'M
JOINED BY MY COLLEAGUE, TONY
DICKHERBER WHO'S ALSO ON THE
LINE.
WE'VE WORKED CLOSELY ON THIS
PROGRAM AND I HOPE HE'LL BE ABLE
TO JOIN THE DISCUSSION AT THE
END.
SO I'M REALLY DELIGHTED TO HAVE
A CHANCE TO TELL BUT CANCER
GRAND CHALLENGES, WHICH AS YOU
JUST HEARD IS ACTUALLY A
PARTNERSHIP THAT WE RUN WITH
CANCER RESEARCH UK, AND THEY
ARE, IN FACT, A PRIVATE CHARITY
IN THE UNITED KINGDOM.
SO WHAT I'M HOPING TO DO IN THE
NEXT FEW MINUTES IS JUST TO TELL
YOU A LITTLE BIT ABOUT HOW THIS
PROGRAM IS SET UP AND WHAT WE'RE
TRYING TO ACCOMPLISH, AND THEN
WHAT I HOPE IS THAT AFTER MY
PART, YOU'LL HAVE A CHANCE TO
HEAR SOME ADDITIONAL, I THINK,
VERY IMPORTANT PERSPECTIVES FROM
BOTH YELICK AND JOYA, BOTH OF
WHOM HAVE BEEN VERY INTIMATELY
INVOLVED IN THE PATIENT ADVOCACY
EFFORTS AROUND CANCER GRAND
CHALLENGES, AND I THINK WILL BE
ABLE TO PROVIDE YOU SORT OF AN
INSIDER'S VIEW OF THE
OPPORTUNITIES THEY SEE WITH THIS
PROGRAM.
SO THIS IS SORT OF THE ROAD MAP
FOR MY TALK TODAY.
FIRST I WANTED TO GIVE YOU SORT
OF A BRIEF BACKGROUND ON WHY
CANCER GRAND CHALLENGES WAS
CREATED IN THE FIRST PLACE, AND
HOW IT ACTUALLY SORT OF BUILDS
UPON ANOTHER NCI PROGRAM THAT
PRECEDED IT A FEW YEARS EARLIER.
I WILL ALSO SAY A FEW WORDS
ABOUT WHAT WE ACTUALLY MEAN WHEN
WE REFER TO SOMETHING AS A
CANCER GRAND CHALLENGE AND THE
CRITERIA THAT WE USE WHEN WE
SELECT THE KIND OF RESEARCH
PROBLEMS THAT WE THINK THIS
PROGRAM REALLY OUGHT TO BE
SUPPORTING.
I'LL SAY A LITTLE BIT ABOUT THE
PROJECTS THAT WE'VE FUNDED SINCE
THE PROGRAM BEGAN.
HOPEFULLY YOU ALL RECEIVED THE
PREREADING MATERIAL FOR TODAY'S
MEETING, WHICH INCLUDED SOME
INFORMATION ON SOME OF THE MOST
RECENT TEAMS THAT WE'VE FUNDED,
BUT I'LL ALSO SAY JUST A FEW
WORDS ABOUT SOME OF THE OTHER
TEAMS THAT WERE FUNDED IN THE
PRIOR ROUND.
AND THEN OF PARTICULAR INTEREST
TO THIS GROUP, I HOPE, I'LL SAY
A FEW WORDS ABOUT HOW WE INVOLVE
PATIENT ADVOCATES IN THE PROGRAM
AND SHARE JUST ONE QUICK EXAMPLE
OF HOW ONE OF ARE OUR FUNDED
TEAMS HAS BEEN INVOLVED
SPECIFICALLY IN PATIENT AND
PUBLIC ENGAGEMENT, WHICH I HOPE
THEN WILL BE A SORT OF
JUMPING-OFF POINT FOR SOME
ADDITIONAL DISCUSSION AND Q & A
ABOUT THE PROGRAM.
SO AS SOME OF YOU MAY KNOW, WAY
BACK IN 2011, NCI ESTABLISHED A
PROGRAM CALLED PROVOCATIVE
QUESTIONS.
SO THIS WAS A PROGRAM THAT WAS
SPEARHEADED BY HAROLD VARMUS,
AND THE GOAL OF THIS PROGRAM
REALLY WAS TO STIMULATE RESEARCH
IN AREAS THAT WERE EITHER
PERPLEXING OR PERHAPS SEEMED
PARADOXICAL OR PERHAPS FOR SOME
OTHER REASON HADN'T RECEIVED
WHAT WE CONSIDER TO BE ENOUGH
ATTENTION.
SO THE WAY THIS PROGRAM WAS RUN
WAS THAT NEW RESEARCH QUESTIONS
WOULD BE DEVELOPED PERIODICALLY
BY GOING OUT AND ACTUALLY
ENGAGING WITH THE CANCER
RESEARCH COMMUNITY.
AND THE WAY WE DID THAT WAS TO
RUN A SERIES OF SMALL WORKSHOPS
WITH MANY DIFFERENT RESEARCHERS
IN THE EXTRAMURAL COMMUNITY, AND
THEN AFTER A SERIES OF THOSE
WORKSHOPS HAD BEEN HELD, SOME OF
THE MOST INTERESTING IDEAS THAT
EMERGED FROM THOSE GROUPS WOULD
THEN BE ADVERTISED THROUGH
FUNDING ANNOUNCEMENTS AND THEN
WE WOULD SUPPORT R01 AND
R21 AWARDS DO SOME RESEARCH IN
THOSE AREAS.
SO THESE AWARDS WERE IN THE
RANGE OF ABOUT 300 TO $500,000
EACH.
THE PROJECTS WERE USUALLY, NOT
ALWAYS, BUT USUALLY LED BY A
SINGLE INVESTIGATOR, AND FOR
ABOUT 10 YEARS OR SO, NCI
SUPPORTED IN THE RANGE OF ABOUT
35 TO 50 OF THESE AWARDS PER
YEAR TO GO AFTER SOME OF THESE
INTERESTING QUESTIONS.
SO AROUND 2015, OUR FRIENDS AT
CANCER RESEARCH UK STARTED
THINKING ABOUT A SLIGHT
VARIATION ON THIS FUNDING
APPROACH, AND THEY ACTUALLY
LAUNCHED AN INITIATIVE CALLED
THE CRUK GRAND CHALLENGE.
SO THE STRATEGY BEHIND THIS
PROGRAM WAS TO COMBINE THIS
COMMUNITY ENGAGEMENT AND PROBLEM
DEVELOPMENT PROCESS OF THE
PROVOCATIVE QUESTIONS INITIATIVE
WITH A TEAM SCIENCE-BASED
APPROACH IN WHICH THEY WERE
PROPOSING TO GO AFTER PROBLEMS
THAT WERE POTENTIALLY MUCH, MUCH
BIGGER THAN THE ONES THAT COULD
BE TACKLED BY INDIVIDUAL
INVESTIGATORS.
SO JUST TO KIND OF GIVE YOU A
SENSE OF SCALE FOR THAT, THESE
AWARDS WERE IN THE RANGE OF
ABOUT 16 TO 20 MILLION POUNDS,
WHICH IN U.S. CURRENCY IS KIND
OF IN THE RANGE OF ABOUT 20 TO
$25 MILLION, AND THESE TEAMS
THAT CRUK WAS FUNDING WERE
ANYWHERE FROM 10 TO 15
INVESTIGATORS AT DIFFERENT
INSTITUTIONS AROUND THE WORLD,
AND BETWEEN 2017 AND 2019, CRUK
FUNDED SEVEN OF THESE PROJECT
TEAMS TO START ADDRESSING SOME
MUCH BIGGER CHALLENGES IN CANCER
RESEARCH.
SO AS IT TURNED OUT, NCI HAD
ALSO SORT OF BEEN THINKING ABOUT
DOING SOMETHING SIMILAR, AND
AROUND 2019, NCI AND CRUK SAT
DOWN AND STARTED THINKING ABOUT
THE POSSIBILITY OF WHETHER WE
COULD ACTUALLY PARTNER TO RUN A
JOINT GRAND CHALLENGE INITIATIVE
TOGETHER, AND AS IT TURNS OUT,
THAT'S EXACTLY WHAT WE DID.
SO IN 2020, NCI AND CRUK
PARTNERED TO EXPAND CRUK'S GRAND
CHALLENGE INITIATIVE, AND TO
DEVELOP THAT INTO A
COLLABORATIVE FUNDING INITIATIVE
THAT WE'VE SINCE REBRANDED AS
CANCER GRAND CHALLENGES.
SO THE GOAL OF THIS PROGRAM,
AGAIN, IS TO SET VERY AMBITIOUS
CHALLENGES IN CANCER RESEARCH,
AND THEN PROVIDE LARGE AWARDS,
UP TO $5 MILLION PER YEAR OVER
FIVE YEARS, SO 25 MILLION TOTAL,
IN ORDER TO SUPPORT
MULTI-NATIONAL TEAMS TO ADDRESS
THOSE CHALLENGES.
SO THE INITIATIVE IS GUIDED BY
AN INTERNATIONAL SCIENTIFIC
COMMITTEE, WHICH WE RELY ON TO
PROVIDE US ADVICE ON NOT ONLY
THE CHALLENGES THAT WE SELECT,
BUT ALSO THE TEAMS THAT WE FUND,
AND WHICH WE INCORPORATE INPUTS
FROM THE GLOBAL RESEARCH
COMMUNITY TO ACTUALLY DEVELOP
THOSE CHALLENGE IDEAS, AS WELL
AS INPUTS FROM PEOPLE WHO ARE
AFFECTED BY CANCER.
SO FOR THE FIRST PHASE OF THE
PARTNERSHIP, NCI AND CRUK AGREED
TO CO-FUND THREE ROUNDS OF
AWARDS WITH UP TO FOUR AWARDS
PER ROUND, AND WE DO THAT -- THE
NEW AWARDS, APPROXIMATELY EVERY
TWO YEARS.
SO WHAT EXACTLY DO WE MEAN WHEN
WE SAY CANCER GRAND CHALLENGE?
AND HOW ARE THESE PROBLEMS SORT
OF DIFFERENT FROM THE OTHER
RESEARCH THAT BOTH NCI AND CRUK
FUND?
SO TO BE FAIR, SOME OF THE
CRITERIA DO OVERLAP WITH SOME OF
OUR OTHER PROGRAMS, BUT SOME OF
THESE ARE INTENTIONALLY UNIQUE
JUST FOR THIS PROGRAM.
SO FIRST AND FOREMOST, WE'RE
INTERESTED IN ADDRESSING VERY
IMPORTANT AND COMPLEX PROBLEMS
IN CANCER RESEARCH, WHICH IF
THEY WERE TO BE SOLVED, WOULD
HAVE SIGNIFICANT BENEFIT FOR
CANCER PATIENTS.
SO THESE CAN BE PROBLEMS THAT
ARE RELATED TO EITHER
UNDERSTANDING, PREVENTING,
DETECTING OR TREATING CANCER,
AND THE WAY THE TEAMS GO AFTER
THESE PROBLEMS CAN BE THROUGH A
VARIETY OF APPROACHES, WHETHER
THAT'S BASIC RESEARCH,
TRANSLATIONAL CLINICAL OR
POPULATION RESEARCH.
SO WE INTENTIONALLY CAST A VERY
BROAD NET IN TERMS OF THE TYPES
OF RESEARCH THAT WE COULD FUND.
CHALLENGES COULD BE NEW PROBLEMS
THAT HAVE EMERGED FAIRLY
RECENTLY FROM RECENT RESEARCH,
OR IN SOME CASES THEY CAN
ACTUALLY BE PERSISTENT PROBLEMS
THAT HAVE EXISTED FOR MANY
DECADES.
BUT IN ALL CASES, WHAT WE'RE
REALLY LOOKING FOR ARE PROBLEMS
THAT ARE OF SUFFICIENT SCALE AND
SCOPE THAT THEY REALLY DEMAND
INTELLECTUAL INPUTS FROM
MULTIPLE INVESTIGATORS.
WE'RE REALLY LOOKING FOR THINGS
THAT CAN ONLY BE TACKLED BY
INTERNATIONAL MULTIDISCIPLINARY
TEAMS.
ALSO A VERY IMPORTANT CRITERION
FOR THE THINGS WE SELECT IS THAT
WE'RE REALLY LOOKING FOR
PROBLEMS THAT ARE TIMELY.
ESPECIALLY IN AREAS THAT WE
THINK RESEARCHERS ARE POISED TO
MAKE SIGNIFICANT PROBLEM IN THE
NEAR TERM.
AND IF YOU HAVE AN INTEREST IN
LOOKING AT WHAT SOME OF ALL THE
OTHER CHALLENGES HAVE BEEN IN
PRIOR ROUNDS, YOU CAN GO TO THIS
LINK ON THE SLIDE TO READ A
LITTLE BIT MORE ABOUT PREVIOUS
CHALLENGES.
SO WE ACTUALLY FUNDED OUR FIRST
AWARDS WAY BACK IN 2022, AND IN
THE INTEREST OF TIME TODAY, I'M
NOT GOING TO GO THROUGH ALL OF
THESE BUT I JUST WANTED TO
HIGHLIGHT A COUPLE TO GIVE YOU
KIND OF A FLAVOR OF SOME OF THE
KIND OF WORK THAT'S BEING DONE.
THE FIRST ONE I'LL MENTION IS A
PROJECT FROM TEAM EDYNAMIC,
WHICH IS LED BY AN INVESTIGATOR
NAMED PAUL MISCHEL WHO'S AT
STANFORD.
IN THIS PROJECT, THE TEAM IS
STUDYING HOW SMALL CIRCULAR
PIECES OF DNA, WHICH ARE CALLED
EXTRA CHROMOSOMAL DNAs, OR
ECDNAs FOR SHORT, ARE FORMED
IN CANCER CELLS.
SO THIS IS AN INTERESTING AREA.
WE'VE KNOWN ABOUT THESE SMALL
DNAs LITERALLY FOR DECADES,
BUT ONLY RECENTLY WE'VE COME TO
UNDERSTAND THAT THESE ARE
ASSOCIATED WITH VERY AGGRESSIVE
CANCERS AND APPEAR TO PLAY A
VERY IMPORTANT ROLE IN CANCER
PROGRESSION.
SO THIS TEAM IS LOOKING TO
UNDERSTAND HOW THESE ECDNAs
ARE ABLE TO FORM IN CANCER AND
HOW THEY DRIVE CANCER, WHICH WE
BELIEVE IS GOING TO HAVE THE
POTENTIAL TO INFORM SOME NEW
TREATMENT STRATEGIES THAT WILL
ACTUALLY BE APPLICABLE ACROSS A
VARIETY OF DIFFERENT CANCER
TYPES.
THE OTHER PROJECT I'LL QUICKLY
MENTION FROM THIS ROUND IS TEAM
CANCAN, WHICH IS FOCUSED ON
STUDYING CANCER CACHEXIA.
AS MANY OF YOU WILL KNOW, CANCER
CACHEXIA INVOLVES A DECLINE IN
MUSCLE MASS AND PROGRESS YOU
HAVE FUNCTIONAL IMPAIRMENT IN
CANCER PATIENTS, SO THIS TEAM IS
WORKING TO IDENTIFY SPECIFIC
CLINICAL SUBTYPES OF CANCER
CACHEXIA IN WHICH THEY'LL USE
THAT INFORMATION TO DEVELOP NEW
TREATMENTS FOR CACHEXIA THAT WE
HOPE WILL BE BETTER TAILORED TO
IMPROVE QUALITY OF LIFE AND LIFE
EXPECTANCY, IN PARTICULAR CANCER
TYPES AND INDIVIDUAL PATIENTS.
SO I SHOULD MENTION THAT ALL OF
THESE PROJECTS INVOLVE UPWARDS
OF 10 TO 15 INVESTIGATORS AT
VARIOUS INSTITUTIONS AROUND THE
WORLD.
THE PICTURES THAT ARE SHOWN HERE
ARE OF THE TEAM LEADS THAT ARE
RESPONSIBLE FOR LEADING EACH OF
THESE INDIVIDUAL PROJECTS.
SO I DO HOPE YOU HAD A CHANCE TO
GLANCE, AT LOWE'S, AT LEASE, ATE
PRE-READ MATERIAL FOR TODAY IF
NOT READ IT CAREFULLY.
THESE WERE THE TEAMS MENTIONED
IN THAT ARTICLE.
AGAIN IN THE INTEREST OF TIME, I
WON'T GO THROUGH ALL OF THEM BUT
I'LL JUST HIGHLIGHT A COUPLE.
SO TEAM PROSPECT IS WORKING ON
AN EXCITING PROJECT FOCUSED ON
DETERMINING WHY THE INCIDENCE OF
EARLY ONSET CANCERS IS RISING
GLOBALLY.
WHICH SOMEWHAT ALARMINGLY IS A
PHENOMENON THAT'S HAPPENING FOR
MULTIPLE DIFFERENT CANCER TYPES
AND WE DON'T KNOW WHY.
THIS PROJECT IS FOCUSED ON ONE
OF THE MOST NOTABLE EXAMPLES OF
THAT, WHICH IS EARLY ONSET
COLORECTAL CANCER, AND IN THIS
PROJECT, THEY'RE ATTEMPTING TO
CHARACTERIZE THE MOLECULAR
CHANGES THAT ARISE IN AN
INDIVIDUAL DUE TO ALL THE
VARIOUS ENVIRONMENTAL EXPOSURES
ACROSS THAT INDIVIDUAL'S
LIFETIME, AND HOW THOSE
EXPOSURES, WE THINK, MAY BE
ASSOCIATED WITH EARLY ONSET
CANCER.
THE OTHER ONE I'LL MENTION
QUICKLY IS TEAM SAMBAI, LED BY
MELISSA DAVIS AT THE MOREHOUSE
SCHOOL OF MEDICINE.
THIS TEAM IS ADDRESSING THE
CHALLENGE ON UNDERSTANDING THE
MECHANISMS THROUGH WHICH
GENETICS, BIOLOGY AND SOCIAL
DETERMINANTS AFFECT OUTCOMES IN
DIVERSE POPULATIONS.
SO THE APPROACH THEY'RE TAKING
IN THIS PROJECT IS TO STUDY A
VERY LARGE COHORT OF MORE THAN
40,000 PATIENTS WITH PROSTATE,
BREAST AND PANCREATIC CANCER, IN
WHICH THEY'LL BE STUDYING NOT
ONLY AFRICAN AMERICAN AND BLACK
BRITISH POPULATIONS, BUT ALSO
PARTICIPANTS FROM SIX OTHER
AFRICAN COUNTRIES, IN WHICH THE
OVERARCHING GOAL HERE IS TO
START TO DECOU DEACON VO DECONVN
START TO DEFINE THE UNDERLYING
CAUSES OF DISPARATE HEALTH
OUTCOMES IN THESE VARIOUS
UNDERSERVED POPULATIONS.
SO A MOMENT AGO, I MENTIONED TO
YOU THAT NCI AND CRUK AGREED TO
CO-FUND FOUR TEAMS PER ROUND,
BUT WE'RE VERY EXCITED THAT WE
ACTUALLY HAVE A FIFTH TEAM IN
THIS ROUND WHICH IS SHOWN HERE,
AND THIS TEAM WILL ACTUALLY BE
FULLY FUNDED BY CRUK.
SO AS A PRIVATE CHARITY, CRUK
RELIES ON FUNDING SUPPORT FROM
OTHER DONORS AND PARTNERS, SOME
OF WHOM ARE SHOWN HERE ON THE
SLIDE, AND SOME OF THESE
PARTNERS HAVE ACTUALLY RALLIED
SPECIFICALLY AROUND THE CANCER
GRAND CHALLENGE INITIATIVE,
WHICH IS ALLOWING CRUK THAT
ADDITIONAL FUNDING SUPPORT TO
FUND THIS TEAM.
SO I SHOULD EMPHASIZE HERE THAT
AS A U.S. FEDERAL AGENCY, NCI
DOES NOT PARTICIPATE IN
FUNDRAISING EFFORTS, ALTHOUGH
THIS TEAM THAT WILL BE FUNDED BY
CRUK IS STILL VERY MUCH
CONSIDERED TO BE PART OF THE
OVERALL GRAND CANCER CHALLENGE
INITIATIVE AND WE'LL BE CLOSELY
TRACKING THEIR RESEARCH
DISCOVERIES SO WE CAN FOLD THAT
INTO OUR GREATER UNDERSTANDING
IN THIS PARTICULAR CHALLENGE
AREA.
THIS TEAM IS ADDRESSING A
CHALLENGE ON DEVELOPING NEW
THERAPIES PARTICULARLY TARGETING
PEDIATRIC SOLID TUMORS USING
DRUGS CALLED PROTACs,
SPECIFICALLY DESIGNED TO TARGET
AND ELIMINATE PROTEINS THAT
DRIVE SOLID TUMORS IN CHILDREN.
SO IN THE LAST COUPLE OF SLIDES
AND FEW MINUTES, I WANT TO SAY
JUST A FEW WORDS ABOUT HOW WE
INVOLVE PATIENT ADVOCATES IN
CANCER GRAND CHALLENGES, WHICH I
SUSPECT IS OF PARTICULAR
INTEREST TO THIS GROUP.
SO ONE OF THE REQUIREMENTS IN
ORDER TO RECEIVE FUNDING UNDER
THIS PROGRAM IS THAT THE
RESEARCH TEAMS MUST INVOLVE
PATIENT ADVOCATES IN THEIR
RESEARCH.
AND IN FACT, WE SAY THAT THEY'RE
REQUIRED TO RECRUIT AT LEAST ONE
PATIENT ADVOCATE WITH A CLEARLY
TEE FIDEFINED ROLE, ALTHOUGH INT
YEARS, ALL OF THE TEAMS HAVE
COME BACK TO US PROPOSING TO
INVOLVE MULTIPLE PATIENT
ADVOCATES, SOME OF WHOM ARE
SHOWN HERE ON THE SLIDE.
SO IN THE GUIDANCE THAT WE
PROVIDE TO THE TEAMS, WE ASK
THAT THE ADVOCATES SHOULD
REPRESENT PEOPLE AFFECTED BY
CANCER AS A GROUP AND NOT JUST
PROVIDE THEIR INDIVIDUAL
VIEWPOINTS OR THAT OF A
PARTICULAR ADVOCACY
ORGANIZATION, AND I AM SURE THE
FOLKS ON THE CALL APPRECIATE
SOME OF THE CHALLENGES AND
OPPORTUNITIES IN DOING THAT MUCH
BETTER THAN I DO.
SOME OF THE OTHER GUIDANCE THAT
WE PROVIDE IS THAT THE RESEARCH
TEAMS SHOULD COLLABORATE VERY
CLOSELY WITH THEIR ADVOCATES
THROUGHOUT THE PROJECT IN SUCH A
WAY THAT THAT INTERACTION REALLY
ADDS VALUE TO THE PROJECT AND
HELPS TO ADVANCE PROGRESS
TOWARDS SOLVING THE CHALLENGE.
SO JUST TO GET MAYBE A LITTLE
BIT MORE ON THE WEEDS THERE IN
TERMS OF WHAT THAT COULD LOOK
LIKE, WE'VE ACTUALLY WORKED
CLOSELY HERE AT THE NCI WITH OUR
COUNTERPARTS AT CRUK TO
ESTABLISH SOME DEFINITIONS FOR
PATIENT ADVOCACY ACTIVITIES
WHICH ALLOWS THE TEAMS TO
DESCRIBE THEIR ACTIVITIES USING
A COMMON TERMINOLOGY.
I REALIZE SOME OF THESE
DEFINITIONS MAY NOT NECESSARILY
REFLECT HOW THESE TERMS ARE
ALWAYS USED HERE IN THE U.S. OR
PERHAPS IN OTHER LOCALES, BUT
THE REAL INTENT HERE WAS TO
HOPEFULLY AGREE ON A COMMON
LEXICON THAT WE CAN USE ACROSS
AN INTERNATIONAL COMMUNITY OF
RESEARCHERS AND PATIENT
ADVOCATES SO THAT EVERYONE IS
REALLY SPEAKING THE SAME
LANGUAGE.
SO FOR THE PURPOSES OF CANCER
GRAND CHALLENGES, WE USE THIS
TERM INVOLVEMENT TO MEAN WHEN
PATIENT ADVOCATES USE THEIR
EXPERIENCES WITH CANCER TO HELP
ACTUALLY SHAPE THE RESEARCH IN
WHICH THE ADVOCATES HAVE A VOICE
THAT'S THEN REFLECTED IN THE
SCIENTIFIC STRATEGY.
WE ALSO THEN USE THE TERM
ENGAGEMENT TO MEAN WHEN PATIENT
ADVOCATES ARE INVOLVED IN
SHARING INFORMATION AND
KNOWLEDGE ABOUT THE RESEARCH,
EITHER WITH OTHER PATIENT
ADVOCATES OR THE GENERAL PUBLIC
OR OTHERS WHO ARE NOT DIRECTLY
INVOLVED OR ASSOCIATED WITH THE
RESEARCH.
AND THEN WE DISTINGUISH BOTH OF
THOSE ACTIVITIES FROM PATIENT
PARTICIPATION, IN WHICH PATIENTS
ARE EITHER PART OF A RESEARCH
STUDY OR A CLINICAL TRIAL, BUT
DON'T WORK DIRECTLY WITH THE
RESEARCHERS ON THE ACTUAL
PROJECT.
SO ESTABLISHING THOSE COMMON
DEFINITIONS HAS REALLY BEEN JUST
ONE OF THE MANY ASPECTS THAT
WE'VE HAD TO ADDRESS AS WE'VE
WORKED TOGETHER WITH
INTERNATIONAL PARTNERS TO REALLY
EMBED ADVOCACY WITHIN THE
OVERALL CANCER GRAND CHALLENGES
INITIATIVE.
TO HELP US WITH THAT, WE'VE
ESTABLISHED THE GROUP SHOWN ON
THIS SLIDE, WHICH IS THE CANCER
GRAND CHALLENGES ADVOCACY PANEL.
SO THIS IS A GROUP CHAIRED BY
MARGARET GRAYSON IN THE UK AND
THEY'VE REALLY BEEN INSTRUMENTAL
IN HELPING TO LEAD THIS
IMPORTANT PART OF THE PROGRAM.
SO AS YOU CAN SEE FROM THE FOLKS
ON THE SLIDE, WE NOW HAVE
MEMBERS FROM VARIOUS COUNTRIES
FROM AROUND THE WORLD, AND WE
REALLY DO RELY HEAVILY ON THIS
GROUP TO HELP US IDENTIFY BOTH
SOME OF THE CHALLENGES, BUT ALSO
THE OPPORTUNITIES THAT WE THINK
THERE ARE IN TERMS OF HOW WE CAN
APPROACH INVOLVING PATIENT
ADVOCATES IN THE PROGRAM.
SO THEY ASSIST US IN DOING A
NUMBER OF THINGS.
THIS IS JUST A BRIEF LIST OF
SOME OF THE IMPORTANT THINGS
THEY HELP US DO.
SO THEY ASSIST THE PROGRAM TEAM
IN DEVELOPING STRATEGIES FOR HOW
WE INVOLVE PATIENT ADVOCATES IN
CGC RESEARCH.
THEY PROVIDE IMPORTANT FEEDBACK
ON WHAT THE TEAMS PROPOSE TO US
IN TERMS OF THEIR APPROACHES FOR
INVOLVEMENT ENGAGEMENT, AND IN
THAT WAY REALLY HELP TO SHAPE
WHAT THE TEAMS ARE ABLE TO DO
AND HOW THEY REFINE THOSE
APPROACHES AND THEN THEY ALSO
ENGAGE WITH PATIENT ADVOCATES ON
FUNDED TEAMS THROUGHOUT THE
PROJECTS TO REALLY HELP THEM
CONTINUE TO REFINE AND ENHANCE
THOSE PATIENT ADVOCACY EFFORTS.
SO I THINK THIS LAST POINT IS
REALLY IMPORTANT BECAUSE WHAT
WE'VE SEEN, I THINK, OVER THE
LAST COUPLE OF YEARS IS THAT THE
TEAMS ARE ENGAGING IN PATIENT
ADVOCACY IN DIFFERENT WAYS IN
WHICH THERE'S SOME REALLY --
SOME GREAT OPPORTUNITIES FOR THE
TEAMS TO LEARN FROM ONE ANOTHER,
AND I THINK ONE OF THE IMPORTANT
ROLES THAT THIS ADVOCACY PANEL
PLAYS IS IN HELPING TO
FACILITATE THAT AND THE WAYS
THAT THEY'RE ABLE TO INTERACT
ACROSS THE VARIOUS TEAMS AND IN
SOME CASES SHARE BEST PRACTICES
AND BOUNCE IDEAS OFF OF THEM.
SO I JUST WANTED, BEFORE I
CLOSE, TO MENTION ONE EXAMPLE OF
A PATIENT ENGAGEMENT ACTIVITY BY
ONE OF THE TEAMS THAT WAS FUNDED
BY CRUK BACK IN 2019.
THIS TEAM IS CALLED TEAM
OPTIMISTICC, AND THE ACRONYM FOR
THEIR TEAM STANDS FOR
OPPORTUNITY TO INVESTIGATE THE
MICROBIOME'S IMPACT ON SCIENCE
AND TREATMENT IN COLORECTAL
CANCER.
SO I THINK IT'S REALLY
INTERESTING WHAT THE PATIENT
ADVOCATES HAVE DONE ON THIS
TEAM.
THEY HAVE SPEARHEADED AN EFFORT
TO PRODUCE NINE EDUCATIONAL
WEBINARS TO SHARE KNOWLEDGE
ABOUT THIS RESEARCH IN WHICH
THEY CONDUCTED A SERIES OF
FORMAL CONVERSATIONS BETWEEN THE
RESEARCHERS ON THE TEAM AND THE
PATIENT ADVOCATES AND IN DOING
THAT, THEY COVERED A NUMBER OF
TOPICS OF POTENTIAL INTEREST TO
EITHER OTHER PATIENT ADVOCATES
OR IN SOME CASES THE GENERAL
PUBLIC, THINGS LIKE HOW
LIFESTYLE FACTORS SUCH AS DIET,
ANTIBIOTIC USE CAN IMPACT THE
MICROBIOME, POSSIBLE
IMPLICATIONS FOR PREVENTION AND
SCREENING OF COLORECTAL CANCER,
AND HOW THIS RESEARCH, WE HOPE,
MAY RESULT IN USING NOVEL
TREATMENT STRATEGIES FOR
COLORECTAL CANCER, INCLUDING
VACCINES IN SOME CASES, AND IN
OTHER CASES POTENTIALLY
IMMUNOTHERAPY.
SO FOR ME, ESPECIALLY AS A
SCIENTIST BY TRAINING, I THOUGHT
THIS WAS A REALLY GREAT EXAMPLE
OF HOW THE PATIENT ADVOCATES ON
THIS TEAM HAVE REALLY MADE THIS
RESEARCH MORE IMPACTFUL BY
MAKING IT MORE ACCESSIBLE TO A
MUCH BROADER AUDIENCE.
AND THERE ARE MANY OTHERS, THIS
IS THE ONE I PICKED AND I HOPE
YELICK AND JOYA MAY SHARE SOME
OTHER EXAMPLES WITH US.
SO I'M GOING TO CLOSE MY PART OF
THE PRESENTATION HERE.
I DO WANT TO ACKNOWLEDGE SOME OF
THE MANY PEOPLE THAT IT TAKES TO
MAKE A PARTNERSHIP LIKE THIS
WORK.
THERE'S A JOINT CRUK-NCI
MANAGEMENT GROUP THAT'S
RESPONSIBLE FOR THE OVERALL
COORDINATION OF THE PROGRAM.
ALSO THIS GROWING LIST OF BOTH
NCI AND CRUK PROGRAM OFFICIALS
AND PROGRAM SCIENTISTS WHO ARE
KEEPING CAREFUL TABS ON HOW
THESE PROJECTS ARE EVOLVING, AS
WELL AS A VERY DEDICATED TEAM
THAT TRACKS AND MANAGES HOW THE
ACTUAL FUNDS ARE BEING SPENT,
WHICH IT TURNS OUT IS NOT AN
EASY ENDEAVOR WHEN YOU HAVE TWO
DIFFERENT FUNDING ORGANIZATIONS
INVOLVED.
FINALLY, I WOULD BE REMISS IF I
DID NOT THANK THE PEOPLE WHO ARE
INVOLVE WOULD IN THE PATIENT
ADVOCACY PIECE WHO I APOLOGIZE
ARE NOT SHOWN ON THE SLIDE, BUT
AT CRUK, ANDREA DELGADO GARCIA
HAS DONE A FANTASTIC JOB LEADING
THE ADVOCACY EFFORT ON OUR SIDE,
LAURIE AND BREEZE RILEY HAVE
DONE AN AMAZING JOB WORKING WITH
OUR CRUK COUNTERPARTS TO MAKE
SURE THAT WE DO THIS IN THE
RIGHT WAY.
SO I WANT TO ACKNOWLEDGE ALL OF
THEM.
SO I'M GOING TO STOP HERE,
AGAIN, I REALLY WANT TO THANK
YOU FOR THE INVITATION AND YOUR
TIME TODAY, AND I LOOK FORWARD
TO YOUR QUESTIONS AND THE
DISCUSSION.
SO THANK YOU.
>> THANK YOU SO MUCH, DR. KURTZ,
FOR SHARING THIS COMPREHENSIVE
VIEW OF THE EXCITING WORK
HAPPENING WITH THE CANCER GRAND
CHALLENGES.
AT THIS TIME, I'D LIKE TO INVITE
YELICK AND JOYA TO JUST SHARE A
LITTLE BIT ABOUT THEIR
EXPERIENCES AND WHAT IT'S LIKE
BEING ON THE ADVOCACY PANEL.
I KNOW THAT FROM THE ADVOCATES I
KNOW WHO ARE INVOLVED ON TEAM
PROJECTS, THEY RAVE ABOUT WHAT A
WONDERFUL EXPERIENCE IT IS, AND
JUST A NOTE TO AMY, DO WE NEED
TO CHANGE TO THE OFFICE OF
ADVOCACY INVOLVEMENT, NOW THAT
WE HAVE A NEW DEFINITION?
BUT THAT'S FOR ANOTHER TIME.
BUT JOYA OR YELICK, IF EITHER OF
YOU WOULD LIKE TO TAKE A FEW
MOMENTS TO SHARE, WE HAVE PLENTY
OF TIME.
>> I'LL START BECAUSE IF YELICK
START I'LL END UP SAYING WHAT HE
SAID.
THIS HAS BEEN A FANTASTIC
SPIRIT.
YELAK AND I BOTH STARTED AT THE
SAME TIME.
I WAS THRILLED TO HAVE THE
OPPORTUNITY.
IT'S NOT LOST I'M SURE TO
ANYBODY IN THIS GROUP -- ANY OF
OUR MYRIAD ADVOCACY
RELATIONSHIPS, WHAT I ENJOY
ABOUT IT IS EXPOSURE TO MORE
ADVOCATE, MORE PEOPLE FROM AN
INTERNATIONAL PERSPECTIVE THAT
WE CAN SHARE IDEAS AND LEARN
FROM EACH OTHER.
IT'S A PLEASURE TO WORK ON A
TEAM THAT'S ACTUALLY HELPING TO
ADVISE IF THAT'S THE RIGHT WORD
OTHER SEASONED PATIENT
ADVOCATES.
SO LIKE ANDY DESCRIBED, EVERY
TEAM HAS ADVOCATES AND THEY ARE
STELLAR.
THEY ARE PASSIONATE FOR WHATEVER
REASONS AND ALL THE REASONS, AND
THEY ARE NOT AFRAID OR
INTIMIDATED TO SPEAK UP, THEY
FEEL VERY MUCH INVOLVED WITH
THEIR TEAM.
I CAN'T SAY ENOUGH GOOD THINGS.
I CAN'T THINK OF ANYTHING THAT'S
NOT GOOD, IT'S JUST ALL VERY
FAVORABLE EXPERIENCES.
IT'S A PLEASURE TO BE ABLE TO BE
PART OF THE TEAMS THAT ARE
APPLYING FOR FUNDING IN TERMS OF
ASSESSING THEIR APPLICATION AND
THEIR PATIENT INVOLVEMENT, AND
TO BE ABLE TO ADVISE THEM HOW
THEY COULD DO BETTER, BUT TO SEE
THE TEAMS THAT WERE SELECTED, TO
HEAR FROM THE PIs AND ALL THE
TEAM, THE PATIENT ADVOCATES, WAS
THRILLING SO THE SUMMIT WE
ATTENDED IN MARCH WAS JUST
INVIGORATING AND REALLY LIKE ALL
OF OUR INTERACTIONS, WHENEVER
WE'RE TOGETHER, IT RECHARGES ME,
IT HELPS US -- IT REMINDS US AS
IF WE NEED TO BE REMINDED BUT IT
DOES REMIND US OF WHY WE DO WHAT
WE DO.
I'M GLAD, ANDY, THAT YOU SHOUTED
OUT THE PEOPLE THAT WE WORK WITH
MOST CLOSELY AND INCLUDING THE
TEAM HERE IN THE OFFICE OF
ADVOCACY RELATIONS.
SO IT JUST BEEN A PLEASURE.
IT'S INSPIRING.
AND IT MAKES YOU FEEL GOOD ABOUT
WHAT YOU DO AND ABOUT THE
RESEARCH THAT'S BEING CONDUCTED
AND ABOUT THE IMPORTANCE OF
INVOLVING ADVOCATES.
SO IT'S ALL JUST UNDERSCORED BY
THIS AFFILIATION.
>> THANKS, JOYA.
I FORGOT THAT WE MISSED YOU AND
YELAK WHEN WE MET IN PERSON IN
MARCH BECAUSE THIS IS WHERE YOU
WERE.
AND I SEE YOU, LEE, BUT I'D LIKE
TO HEAR A LITTLE FROM YELAK.
>> EVERYTHING JOYA SAID PLUS A
COUPLE OF THINGS I REALLY WANT
TO RE-HIGHLIGHT FROM WHAT
DR. KURTZ SAID IS, THE CGC
PATIENT ADVOCACY PANEL IS TRULY
A REALLY GLOBAL ADVOCACY PANEL
WITH VERY DIVERSE BACKGROUNDS.
AND IT IS IMPORTANT TO ALSO NOTE
AGAIN THAT WE ARE NOT -- OUR
PARTICULAR CANCER OR OUR
PARTICULAR ADVOCACY
ORGANIZATION, BUT REALLY TO
PROVIDE FEEDBACK AND INPUT AND
WORKONICWORK ON THREE THINGS, HO
CREATE A TRAINING PROGRAM AND
TRAINING CURRICULUM FOR ALL
ADVOCATES UPCOMING INTO THE
PROGRAM.
THE SECOND IS ENSURING PROJECT
TEAMS THINK OF PATIENTS FIRST
WHEN THEY'RE THINKING OF THEIR
RESEARCH.
AND THE LAST IS BE A RESOURCE TO
THE SELECTED PROJECT ADVOCATE AS
THEY GO THROUGH THE FIVE-YEAR
PROGRAM.
AS MENTIONED, IT IS A FIVE-YEAR
PROGRAM AND THE UNIQUENESS OF
THIS PROGRAM FOR ME IS THAT THE
PROGRAM TEAM DOESN'T HAVE TO
WORRY ABOUT WHERE NEXT YEAR'S
FUNDING IS GOING TO COME FROM.
THAT FIVE-YEAR IS GUARANTEED,
AND IT REALLY ALLOWS THEM TO
THINK BEYOND WHAT THEY WILL BE
DOING THIS YEAR AND REALLY THINK
AT A VERY GRAND LEVEL.
IN MY OPINION, MARGARET AND
ANDREA FROM UK AND FROM CANCER
GRAND CHALLENGES HAVE DONE A
FANTASTIC JOB OF ENSURING THAT
WE REPRESENT NOT ONLY OURSELVES
AND OUR COUNTRY AND OUR CANCERS,
IF YOU WOULD, BUT ALSO IN
GENERAL THE PATIENT -- AND THE
PATIENTS THAT WE END UP SERVING.
IT IS IN MY OPINION, AGAIN, AS
JOYA SAID, ONE OF THE MOST
SPECIAL PROGRAMS I HAVE BEEN
PART OF, AND I HAVE BEEN PART OF
ADVOCACY FOR A LONG TIME, BUT IT
HAS ALSO FORCED ME TO GROW, IF
YOU WOULD, AND LOOK AT ADVOCACY
VERY DIFFERENTLY AND UNIQUELY,
NOT ONLY BECAUSE I AM THERE
ADVOCATING FOR -- CANCERS BUT
REALLY BEING ABLE TO LOOK AT
THIS FROM A MULTI-STAKEHOLDER
PROBLEMS PERSPECTIVE.
I BELIEVE AVERAGE INSTITUTIONS
THAT ARE PART OF EACH OF THE
PROGRAMS AND THIS HAS MEMBERS
AND THE PROGRAM IS INITIATED IN
MANY DIFFERENT COUNTRIES, IN
FRANCE, INDIA, ITALY, UK, U.S.,
GHANA, SOUTH AFRICA AND MANY
OTHERS.
SO ONE OF -- AND I'LL BE QUIET
NOW, THE GRATIFYING PORTIONS OF
THIS WAS THERE WAS A PROGRAM
THAT CAME INTO THE RFP PROCESS
AND IN OUR OPINION WAS NOT AS
PATIENT-CENTERED.
THE INVESTIGATORS TOOK OUR
FEEDBACK AND BY THE TIME THEY
SUBMITTED IT, IT WAS, IN MY
OPINION, ONE OF THE MOST
PATIENT-CENTERED, ONE OF THE
MOST ADVOCACY IN CURATING BOTH
INVOLVEMENT AND ENGAGEMENT
PERSPECTIVE AND THEY ENDED UP
ACTUALLY WINNING AND BEING
FUNDED AS A PROGRAM.
SO THE ADVOCACY TEAMS DO REAL
REALLY -- AND ARE GOING TO BE
RESOURCES THROUGHOUT THE
LIFECYCLE OF THAT PROJECT.
>> THANK YOU SO MUCH, JOYA AND
YELAK, THAT IS SO WONDERFUL TO
HEAR.
I THINK, TOO, ACROSS THE BOARD
THAT AS RESEARCH ADVOCATES,
WE'RE USED DIFFERENTLY, OR
INVOLVED DIFFERENTLY IN OUR
DIFFERENT SPACES AND HAVING, YOU
KNOW, THE BOARD TO GO BACK TO TO
HELP MAKE SURE THAT IT'S THE
BEST THAT IT CAN BE IS REALLY A
FASCINATING AND INTERESTING AND
REALLY HELPFUL CONCEPT.
THANK YOU FOR THE WORK THAT YOU
DO.
LEE, YOU'VE HAD YOUR HAND UP FOR
QUITE A WHILE, YOU'VE BEEN SO
PATIENT.
THANK YOU FOR WAITING.
>> THANKS FOR THE PRESENTATION.
AND THANKS FOR THIS PROGRAM, THE
CANCER GRAND CHALLENGE.
I THINK IT'S A GREAT PROGRAM.
SO I HAVE A PERSPECTIVE AS
ACTUALLY A TEAM MEMBER, SO WHEN
DR. KURTZ HAPPENED TO SHOW
PROJECT OPTIMISTIC IS THE TEAM
THAT I'VE BEEN ON FOR THE PAST
FIVE YEARS.
AND IN FACT, IF THEY'D SHOWN YOU
THAT WEBINAR, I HAD ONE OF THOSE
NINE WEBINAR SEGMENTS WORKING
WITH ONE OF THE RESEARCH THAT I
WAS WORKING WITH.
I LIKED THE PROJECT SO MUCH THAT
ACTUALLY IN I THINK THE 2021
CYCLE, I TEAMED UP WITH A
RESEARCHER WHO I KNOW FROM SWOG
AND WE SUBMITTED A PROPOSAL FOR
CACHEXIA, AND I SEE NOW THE
REASON THAT WE LOST IS BECAUSE
WE NAMED OUR PROJECT "NO MORE
CACHEXIA," NOT CANCAN.
SO HOW COULD YOU COMPARE THOSE
TWO THINGS?
ALSO THIS LAST CYCLE, I WORKED
ON A TEAM THAT WORKED ON
OPTIMISTICC WITH ME, WE DID NOT
GET ASKED TO SUBMIT A PROPOSAL
LIKE WE DID WITH CACHEXIA.
WE'RE ONE OF TWO CACHEXIA.
BUT SORT OF MY EXPERIENCE IS
THAT, YOU KNOW, ON THESE TEAMS,
THE PRE-CLINICAL WORK, THE BASIC
SCIENCE WORK, IT'S MORE
DIFFICULT FOR ADVOCATES TO
REALLY BECOME INVOLVED AND
ENGAGED IN THOSE ACTIVITIES.
IT'S MORE DIFFICULT FOR US
BECAUSE A LOT OF IT, YOU HAVE TO
BE THERE IN PERSON BECAUSE IT'S
LAB SCIENCE, YOU CAN'T -- IT'S
HARD TO DO THAT REMOTELY.
BUT ALSO A LOT OF THOSE
RESEARCHERS HAVE NO EXPERIENCE
WORKING WITH ADVOCATES.
SO WE ACTUALLY DID A SURVEY OF
THE OPTIMISTICC RESEARCHERS, AND
ABOUT 80% FELT THAT ADVOCATES
WERE REALLY HELPFUL AND HELPED
THE WORK AND THE SCIENCE, BUT I
THINK THAT OTHER 15, 20% REALLY
HAD NO EXPERIENCE WORKING WITH
ADVOCATES AND DIDN'T UNDERSTAND
THE BENEFIT WE COULD PROVIDE,
AND MAYBE FOR THEIR PARTICULAR
PART OF THE PROJECT, WE COULDN'T
PROVIDE A LOT OF BENEFIT JUST
BECAUSE OF THE NATURE OF THE
WORK.
BUT I THINK THE PROJECTS ARE
WONDERFUL.
I WOULD ENCOURAGE ANYONE WHO HAS
AN OPPORTUNITY TO PARTICIPATE IN
ONE OF THOSE TO DO SO.
ANOTHER THING, SO I ACTUALLY
ASKED TO BE ON THIS ADVOCATE
PANEL, BUT BECAUSE I WAS ON A
PROJECT ALREADY, I WAS TOLD I
COULD NOT BECOME A MEMBER OF THE
ADVOCACY PANEL.
SO I THOUGHT, WELL, WHAT BETTER
PERSON THAN SOMEONE WHO'S
ACTUALLY WORKING ON A PROJECT
WHO HAS EXPERIENCE WORKING ON
THE PROJECT?
BUT THAT WAS THEIR POLICY, SO I
DIDN'T GET INVOLVED IN THAT.
BUT OUR WORK IS ENDING THIS
YEAR.
WE'RE ON A NO-COST EXTENSION.
WE WERE OPERATING DURING THE
PANDEMIC SO WE DIDN'T SPEND A
LOT OF TRAVEL MONEY, SO WE HAD
EXTRA MONEY SO WE COULD HAVE A
NO-COST EXTENSION SO WE'RE GOING
TO BE GOING FOR THE REST OF THIS
YEAR, ADVOCATES HAVE BEEN
ROLLING OFF BECAUSE IT'S REALLY
JUST FINAL WRAP-UP WORK, WRITING
REPORTS, DOING DATA YO YO ANALY,
AND OUR WORK IS PRETTY MUCH
WRAPPED UP.
BUT I'VE BEEN DOING THIS FOR THE
PAST FIVE YEARS.
IF THIS WAS A CRUK PROJECT AT
THE TIME IT WAS BEFORE THE NCI
GOT INVOLVED, BUT IT WAS STILL
CANCER GRAND CHALLENGES.
SO I REALLY APPRECIATE THE
OPPORTUNITY TO WORK ON IT.
>> THANK YOU SO MUCH, LEE, FOR
THAT VERY COMPREHENSIVE SHARING
OF YOUR TEAM WORK.
IT SO VERY INTERESTING.
DR. CURT, DID YOU WANT TO
RESPOND TO ANY OF THAT?
>> I JUST WANT TO QUICKLY REACT
TO, I THINK, BOTH THE EXAMPLE
THAT YELAK GAVE AND SOME OF THE
COMMENTS LEE JUST MADE.
I THINK WHAT WE'VE SEEN OVER THE
LAST CYCLE IN PARTICULAR IS A
REAL APPRECIATION ON THE PART OF
THE RESEARCH TEAMS FOR THE
LEARNINGS THAT THEY'VE BEEN ABLE
TO GLEAN FROM THE PATIENT
ADVOCACY PANEL MEMBERS.
PARTICULARLY -- SO I DIDN'T GO
INTO ALL THESE DETAILS, BUT THE
WAY WE SOLICIT APPLICATIONS IS
IN TWO PHASES.
SO WE PUT OUT AN ANNOUNCEMENT OF
THE CHALLENGES AND WE ASKED THE
TEAMS SUBMIT TO US SO SORT OF A
SHORT APPLICATION ON THEIR IDEA,
AND THEN WE DOWN-SELECT TO A
GROUP OF FINALISTS, USUALLY
ABOUT A DOZEN OR SO, AND WE WORK
PRETTY CLOSELY WITH THOSE
FINALISTS AS THEY DEVELOP A FULL
APPLICATION.
SO IT'S DURING THAT FULL
APPLICATION DEVELOPMENT THAT WE
PROVIDE ADVICE AND FEEDBACK TO
THEM, AND THAT'S IN THIS LAST
ROUND, WHEN WE'VE REALLY BEEN
ABLE TO SHARE SOME INSIGHTS
AROUND SOME OF THE THINGS THAT
CAN BE EFFECTIVE IN THE PATIENT
ADVOCACY REALM.
TO YELAK'S POINT, I THINK IN
SOME CASES, THE DIFFERENCE
BETWEEN WHERE THEY STARTED AND
WHERE THEY ENDED UP WAS QUITE
SIGNIFICANT, AND THEY REALLY
APPRECIATED THAT.
>> THANK YOU SO MUCH.
THERE WAS A QUESTION IN THE CH
CHAT, KIRSTEN, DO YOU WANT TO
ASK YOUR QUESTION OR DO YOU WANT
ME TO READ IT?
>> I'M HAPPY TO ASK IT.
THANK YOU FOR THE OVERVIEW AND
THE EXAMPLES PROVIDED.
I WAS JUST TYPING IN THE CHAT AS
WELL.
I BELIEVE LONGEVITY HAS BEEN
INVOLVED IN THE CANCAN PROJECT.
I'LL JUST SAY FROM KIND OF THAT
FIRST INITIAL APPLICATION PHASE
AND I'M NO LONGER WITH LONGEVITY
SO I CAN'T -- THIS IS JUST MY
PAST EXPERIENCE, BUT LONGEVITY
WAS REALLY INVOLVED IN THAT
PROCESS, NOT ONLY AS AMY MOORE
WAS THE REPRESENTATIVE, I
BELIEVE, OR IS THE
REPRESENTATIVE, SO HER
EXPERIENCE HAS BEEN VOICED BUT
ALSO REACHING OUT TO OUR PATIENT
AND CAREGIVER COMMUNITIES TO GET
THEIR INPUT.
SO IT WAS A LEGIT PATIENT AND
CONTINUES TO BE ENGAGEMENT.
MY QUESTION IN THE CHAT WAS, CAN
AN INDIVIDUAL WHO'S PART OF A
PATIENT ADVOCACY ORGANIZATION,
CAN THEY BE ON THE CANCER GRAND
CHALLENGES TEAM, EXCUSE MY LACK
OF VOCABULARY RIGHT NOW.
ARE THEY ABLE TO -- IS THEIR
ORGANIZATION ALSO ABLE TO EITHER
BE A LEADING PARTNER IN AN
APPLICATION OR SOMEONE WHO'S NOT
RECEIVING FUNDING THROUGH IT BUT
HELP PAYING, IF THAT MAKES
SENSE.
>> YEAH, I THINK IT DOES.
I'M ACTUALLY GOING TO TAKE THIS
OPPORTUNITY TO LET MY COLLEAGUE
JOIN THE DISCUSSION, SO I'M NOT
HOGGING THE MIC.
BUT TONY, DO YOU WANT TO MAYBE
ADDRESS THAT ONE?
>> ACTUALLY I'M SURE ANDY CAN
HANDLE THIS MUCH MORE ELOQUENTLY
THAN I CAN, BUT IF I UNDERSTAND
ESSENTIALLY WHAT YOU'RE TRYING
TO ASK IS, IF THERE'S A TEAM
ACTUALLY --
>> DID WE LOSE TONY?
>> I THINK WE MIGHT HAVE.
>> OKAY.
I'LL JUMP IN HERE.
SORRY ABOUT THAT.
>> -- AN ADVOCATE ALREADY
POSSIBLE SO --
>> TONY, WE LOST YOU FOR MAYBE
ABOUT, I DON'T KNOW, 20,
30 SECONDS OR SO.
>> OH, NO.
I'M --
>> I'M GOING TO SUGGEST THAT YOU
GO AHEAD AND ANSWER, ANDY.
>> I WILL.
>> THANKS, ANDY.
>> BE HAPPY TO.
SO THE FIRST THING --
>> I'M SORRY.
>> TONY, YOU'RE CUTTING OUT SO
I'M GOING TO GO AHEAD AND FIELD
THIS ONE.
SO THE FIRST THING TO SAY MAYBE
IS THAT THE APPLICANTS IN TERMS
OF ELIGIBILITY ARE THE RESEARCH
INSTITUTION, SO THEY'RE THE LEAD
ON PUTTING THE APPLICATION
TOGETHER AND THEN THE
EXPECTATION IS THAT THEY WILL
ENGAGE WITH ADVOCATES TO JOIN
THAT TEAM AS PART OF THE OVERALL
APPLICATION THAT THEY WRITE.
THERE IS A POLICY THAT WE
GENERALLY DO NOT ALLOW THE SAME
ADVOCATE TO SERVE ON MULTIPLE
TEAMS.
SO AS LONG AS SOMEONE INVOLVED
IN THE ORGANIZATION, IT'S A
DIFFERENT PERSON THAN THE TEAM
THAT'S ALREADY STARTED, THERE'S
NO RESTRICTION ON THAT SAME
ORGANIZATION BECOMING INVOLVED.
DOES THAT ANSWER THE QUESTION
THAT YOU ASKED?
>> I THINK SO, YEAH.
I WAS WONDERING IF, FOR EXAMPLE,
LIKE ONE OF OUR COLLEAGUES HERE
WANTED TO BE PART OF A TEAM, IF
THEY WERE NOT ABLE TO, IF THERE
WAS CONFLICT OF INTEREST OR
ANYTHING LIKE THAT.
>> NO RESTRICTION AT ALL ON
THAT.
AND IF YOU HAVE OTHER QUESTIONS,
PLEASE DON'T HESITATE TO REACH
OUT.
HAPPY TO GO INTO MORE DETAILS.
>> MARTY, DID YOU HAVE A
QUESTION?
>> I DO.
THANKS FOR THE PRESENTATION, AND
YOU KNOW, I REALLY APPRECIATE
THE WORK THAT JOYA AND YELAK ARE
DOING AS PART OF THE PATIENT
ADVOCATE PANEL.
I WONDER IF THERE'S A THOUGHT
ABOUT EXTENDING THAT KIND OF
COLLABORATION TO THE PATIENT
ADVOCATES ON THE INDIVIDUAL
TEAMS THEMSELVES.
I KNOW THAT WHEN I WORKED ON A
PROJECT AS A PATIENT ADVOCATE,
SOMETIMES ACTUALLY TALKING TO
AND SPENDING TIME WITH PATIENT
ADVOCATES ON SEPARATE BUT
COMPARABLE PROJECTS KIND OF
ENERGIZES ME, BUT ALSO GIVES ME
SOME REALLY GOOD INFORMATION AND
IDEAS ON HOW TO BE MORE
EFFECTIVE.
SO WONDERING IF THERE'S ANY
POSSIBILITY OF THE PATIENT
ADVOCATES ON THE INDIVIDUAL
PROJECTS GETTING TOGETHER,
COLLABORATING AT ONE POINT OR
ANOTHER.
>> I'LL GIVE A QUICK RESPONSE TO
THAT AND HAPPY TO HEAR MORE FROM
YELAK AND JOYA.
ONE OF THE THINGS WE DO EACH
YEAR IS WE HOLD CANCER GRAND
CHALLENGES ANNUAL SUMMIT, WHICH
IS AN OPPORTUNITY FOR ALL THE
TEAMS TO COME TOGETHER AND
PRESENT ON THEIR RESEARCH, AS
WELL AS NETWORK AND JUST SHARE
AMONGST THEMSELVES SOME OF THE
THINGS THAT ARE HAPPENING WITH
THEIR TEAMS.
THE PATIENT ADVOCATES HAVE
REALLY USED THAT AS AN
OPPORTUNITY TO HAVE SOME OF
THEIR OWN DISCUSSIONS AROUND
WHAT THEY'RE DOING AND WHAT THEY
CAN LEARN FROM EACH OTHER, SO
THAT'S THEN I THINK A REALLY
RICH OPPORTUNITY FOR SOME
LEARNINGS.
THERE ARE SOME OTHER THINGS THAT
ARE ALSO HAPPENING IN THE
BACKGROUND.
WE'VE RECENTLY MADE SOME
ATTEMPTS TO DO SOME MORE
INFORMAL VIRTUAL MEETINGS THAT
INVOLVE PATIENT ADVOCATES FROM
ACROSS THE TEAMS TO DO EXACTLY
THE KIND OF THING AND HAVE
EXACTLY THE KIND OF INTERACTIONS
THAT YOU'RE TALKING ABOUT.
BUT I'M GOING TO STOP THERE AND
SEE IF YELAK OR JOYA WANT TO SAY
MORE.
>> SO ONE OF THE THINGS THAT
ANDREA STARTED RECENTLY IS OUR
QUARTERLY CHATS BETWEEN
ADVOCATES.
AND ALMOST LIKE A WORKING
SESSION EXPERIENCE SHARING
SESSION BETWEEN ADVOCATES.
WITHIN THE PROJECTS BUT ALSO
WITHIN THE CANCER GRAND
CHALLENGE ADVOCATES AT THE UPPER
LEVEL.
SO I THINK AS YOU KNOW, THE MORE
YOU KNOW PEOPLE, THE MORE YOU
WORK -- FOR EXAMPLE, SOME OF YOU
MAY NOT KNOW, BUT JOYA IS
EXCELLENT WITH SELFIES, FOR
EXAMPLE.
SO SOMEBODY AT TA LEVEL, YOU ARE
ABLE TO WORK MORE WITH THEM.
>> THAT'S MY CLAIM TO FAME,
APPARENTLY.
JUST TO PIGGY BACK OFF THAT, THE
CANCER ADVOCACY CAFE, I BELIEVE
IS WHAT IT'S CALLED, IS A NICE
OPPORTUNITY TO INTERACT WITH
ADVOCATES AND, OF COURSE, AS WAS
ALREADY MENTIONED, THE SUMMIT.
IT JUST RECHARGES YOU AND, LIKE
MARTY YOU SAID, IT'S A NICE WAY
TO -- IT'S AN EFFECTIVE WAY TO
GET TO KNOW PEOPLE AND TO SHARE
EXPERIENCES AND TO JUST GLEAN
INSIGHTS OFF OF EACH OTHER.
SO POINT TAKEN.
>> THAT'S FANTASTIC, THANK YOU.
NICOLE, YOU'VE BEEN WAITING
PATIENTLY.
>> HI.
I HAVE A QUESTION FOR FROM JOYA
AND YELAK'S PERSPECTIVE AS WELL
AS LEE'S BEING ON A PROJECT,
WHAT WOULD YOU SAY IS OR
ESTIMATE YOUR TIME COMMITMENT IS
AS YOUR INVOLVEMENT IN BOTH THE
PANEL AND IN THE PROJECT?
THESE ARE JUST SUCH LARGE
PROJECTS AND I WAS JUST CURIOUS,
ESPECIALLY HEARING ALL THE
DIFFERENT COMPONENTS WITH THE
SUMMIT AND THE TELECONFERENCES,
BECAUSE WE ALL WEAR A LOT OF
HATS.
JUST CURIOUS WHAT THE TIME
COMMITMENT IS FOR BEING
INVOLVED.
>> FROM MY PERSPECTIVE, PUTTING
TOGETHER THE PROPOSAL FOR THE
CACHEXIA PROJECT WHERE IT WAS
BASICALLY I WAS LEADING THE
ADVOCACY WORK, THAT WAS
INCREDIBLY TIME-CONSUMING,
BECAUSE WE COULDN'T TRAVEL TO
LONDON FOR THE PRESENTATION.
WE DID A ZOOM, PRE-RECORDED ZOOM
PRESENTATION.
ACTUALLY HAD A VIDEOGRAPHER COME
OUT TO MY HOUSE WITH A LIGHTING
PERSON, AND WE DID IT AT MY
HOUSE.
THAT REALLY TOOK A LOT OF TIME.
DAY TO DAY, THERE IS NOT AN
INCREDIBLE DEMAND.
WE HAVE MONTHLY MEETINGS FOR AN
HOUR, SO THERE'S THAT.
THEN WE HAVE OTHER SMALLER
MEETINGS, SMALLER GROUPS.
WE HAD WORK PACKAGES, SIX WORK
PACKAGES, SO YOU'RE ASSIGNED TO
A WORK PACKAGE AND YOU HAD A
TEAM MEETING AND THEN WORK
PACKAGE MEETINGS.
SO MAYBE TWO MEETINGS A MONTH,
REVIEWING DOCUMENTS, REVIEWING
PAPERS.
IT REALLY WAS NOT ODIOUS, IT
WASN'T OVERWHELMING.
>> FOR US, THE FIRST FOUR MONTHS
WAS, I THINK, THE MOST DEMANDING
FROM A TIMING PERSPECTIVE,
BECAUSE THAT WAS WHEN THE
PROPOSALS WERE BEING SUBMITTED,
WE WERE READING THROUGH THEM, WE
WERE PROVIDING COMMENTS, WE WERE
HAVING INTERNAL MEETINGS WITH
EACH OTHER TO PROVIDE COMMENTS
BACK TO THEM, AND THEN WE WERE
REVIEWING THE PROPOSALS THAT
WERE SUBMITTED.
AND THEN AS ANDY MENTIONED, THE
CONFERENCE HAPPENED IN THE
MARCH/APRIL TIME FRAME, SO FOR
ME AT LEAST, JANUARY, FEBRUARY,
MARCH, APRIL PROBABLY REQUIRED A
COUPLE OF HOURS A WEEK, BUT THEN
IT HAS FALLEN OFF FROM HOW MUCH
TIME IT IS REQUIRING.
>> AGREED.
I WAS TRYING TO TALLEY HOURS AND
I CAN'T GIVE YOU EXACTLY BUT I
THINK JUST WHAT YELAK SAID, IT
WAS CERTAINLY SOME HOURS ON THE
FRONT END BUT THEN IT KIND OF
TAPERED DOWN, BUT WHAT'S NICE IS
ANDREA DID A FANTASTIC JOB OF
HELPING US ORGANIZE OUR TIME,
JUST READING, JUST LIKE ALL THE
OTHER AFFILIATIONS WE ALL HAVE,
YOU KIND OF KNOW WHAT IT'S GOING
TO BE, BUT NOTHING WAS
OVERWHELMING, JUST WHEN YOU HAD
TO PUT A LITTLE MORE TIME VERSUS
IT WOULD KIND OF TAPER OFF.
>> THANK YOU.
>> IT WAS REASONABLE.
>> THANK YOU ALL SO MUCH.
AND VICKIE.
>> THANK YOU.
I THINK THIS IS WONDERFUL AND
THE WAY SOMETHING AS CRAFTY AND
HARD TO CRACK AS CANCER SHOULD
BE DONE IN TEAMS.
ONE OF THE QUESTIONS THAT I HAVE
GENERALLY, I LOVED HEARING ABOUT
THE KIND OF REFINEMENT OF
LANGUAGE, ABOUT LEE'S EXPERIENCE
OVER A LONGER PERIOD, AND EVEN
HAVING ADVOCATE CAFE.
IS SOMEONE ACTUALLY CAPTURING
THE LEARNINGS AS THE ROLE OF
ADVOCATES HAVE BECOME SO MUCH
MORE ENTRENCHED IN THE RESEARCH
PROCESS SO THAT EVERY TIME WE DO
SOMETHING NEW, WE DON'T HAVE TO
RE-LEARN THOSE STEPS, AND CAN
YOU TALK ABOUT THAT AT ALL?
>> I CAN START AND ANDY AND
OTHERS CAN CHIME IN.
ONE OF THE THINGS THAT I
VOLUNTEERED TO DO, AND WE ARE
THINKING THROUGH, IS CREATING A
WHITE PAPER THAT WILL END UP
PUBLISHING, SO OTHERS CAN
ACTUALLY USE THAT.
AND THEY DON'T HAVE TO RE-CREATE
THIS.
ALSO, A PATIENT ADVOCATE WHO'S
CONSIDERING MEMBERSHIP EITHER AT
A PROJECT LEVEL OR AT THE CANCER
GRAND CHALLENGE LEVEL, YOU WOULD
HAVE A BETTER UNDERSTANDING OF
WHAT IS REQUIRED OF YOU
THROUGHOUT YOUR TENURE, EITHER
THE FIVE-YEAR OR THE TWO OR
THREE-YEAR TENURE THERE.
SO THAT IS MY NEXT IMMEDIATE
NEXT STEPS, IF YOU WOULD.
>> WERE YOU GOING TO SAY
SOMETHING, AMY?
>> SURE.
I WAS ACTUALLY GOING TO DEFER TO
ANDY FIRST AND THEN I CAN SORT
OF CHIME IN.
>> I WAS JUST GOING TO MENTION
ONE THING.
SO LEE WILL KNOW THIS BETTER
THAN I DO, BUT ONE OF THE
PATIENT ADVOCATES ON THE
OPTIMISTICC TEAM NAMED LAURA
PORTER PUBLISHED A REALLY
TERRIFIC ARTICLE ON SORT OF SOME
GENERAL PERSPECTIVES ON PATIENT
ADVOCACY, WHICH I CAN ONLY
ASSUME WERE INFORMED BY HER
EXPERIENCE ON THE OT MYS OPTIMIC
TEAM.
I WAS TRYING TO PULL THAT UP
QUICKLY TO FIND THE LINK BUT I
HAVEN'T FOUND IT JUST YET.
I GUESS THE OTHER THING TO
MENTION IS THAT AT THE ANNUAL
SUMMIT THIS YEAR, AS I ALLUDED
TO, THERE WAS A RECOGNITION THAT
THERE ARE SOME PRETTY
SIGNIFICANT LEARNINGS THAT HAVE
HAPPENED JUST A COUPLE OF YEARS
INTO SOME OF THESE TEAMS THAT
REALLY NEED TO BE SHARED ACROSS
ALL THE TEAMS.
AND SO THERE IS AN EFFORT
UNDERWAY, I THINK, FOR THE
INTERNAL PROGRAM TEAM TO START
CAPTURING THESE THINGS IN SOME
NOTES AND I THINK WE HAVE SOME
MORE THINKING TO DO ABOUT HOW WE
MAKE SURE THOSE DON'T GET LOST,
BUT THAT IS HAPPENING IN THE
BACKGROUND, SO WE DON'T LOSE
THOSE VALUABLE INSIGHTS.
>> I WOULD JUST JUMP IN, ANDY,
I'M SORRY TO INTERRUPT YOU, AMY.
BUT THE WAY THAT ADVOCATES WOULD
LEARN AND GET THAT INFORMATION
AND SHARE THAT INFORMATION IS
PROBABLY A LITTLE BIT DIFFERENT
THAN THE WAY THAT THE RESEAR
RESEARCHERS WHO ARE NEEDING TO
WORK WITH ADVOCATES WOULD LEARN,
SO IT JUST PROBABLY NEEDS TO BE
A BIMODAL PROCESS FOR IF YOU
WANT RESEARCHERS TO LEARN ABOUT
IT, YOU ACTUALLY HAVE TO PUBLISH
IT IN A JOURNAL SO THAT THEY
HAVE THAT THERE AND ADVOCATES
PROBABLY NEED TO HAVE MORE
SESSIONS, I THINK, WHERE THEY
CAN LEARN FROM, SO I THINK BOTH
OF THOSE THINGS ARE REALLY COOL.
>> THAT'S REALLY GREAT --
>> REALLY GOOD POINT.
POINT WELL TAKEN, VICKIE.
SORRY, ANDY.
>> NO, LAURA HAPPENS TO BE A
PHYSICIAN IN ADDITION TO BEING A
PATIENT ADVOCATE, WHICH IS
FANTASTIC, BUT AS YOU SAY, HOW
WE COMMUNICATE AND DISSEMINATE
THAT INFORMATION IS SOMETHING WE
NEED TO THINK CAREFULLY ABOUT,
SO REALLY APPRECIATE THAT
COMMENT.
>> ABSOLUTELY.
AND JUST SORT OF TO TIE A LOT OF
THE DIFFERENT DISCUSSION THREADS
TOGETHER, I THINK ONE OF THE
REASONS THE ADVOCACY OFFICE WAS
INTERESTED IN HAVING ANDY
PRESENT TODAY WAS BECAUSE THIS
IS SUCH A SORT OF NOVEL WAY THAT
ADVOCATES ARE ENGAGED, YOU KNOW,
FROM THE REQUIREMENT IN THE
APPLICATIONS, FROM THE STEP
WHERE THEY'RE ACTUALLY DEFINING
HOW ADVOCATES WILL BE ENGAGED
AND THEN ADVOCATES ARE REVIEWING
WHAT IS WRITTEN IN THAT M
ACATION, AND THEN POTENTIALLY
HELPING THEM REFINE AND REVISE
THAT, WITH -- SORT OF TO
EVERYONE'S POINT, WITH THIS
EVOLUTION COMES LEARNINGS.
THE ADVOCATES ARE REQUIRED TO BE
INVOLVED, THEY GET TO NETWORK
WITH EACH OTHER ACROSS TEAMS AND
THEY ALSO HAVE ONGOING
COMMUNICATION WITH A ADVOCATE
AND ADVISORY PANEL.
NOT ALL TEAM SCIENCES HAVE AN
ADVOCATE ADVISORY PANEL, SO I
JUST THINK ON MULTIPLE LEVELS,
IT'S A REALLY COOL WAY TO BRING
THE COLLECTIVE PATIENT
PERSPECTIVE TO THE SCIENCE.
AND SORT OF VICK EE, TO YOUR
POINTS, AND ONE OF THE THINGS
THAT I KNOW THE ADVOCACY OFFICE
HAS ENJOYED SEEING ARE THE MANY
DIFFERENT ACTIVITIES, NO TEAM IS
THE SAME, THE WAY THATTED A VO
CATS ENGAGE ON EACH TEAM IS
DIFFERENT AND FOR THE ADVOCACY
COMMUNITY AND FOR US TO BE ABLE
TO SEE ALL THE DIFFERENT
ACTIVITIES, SHARE THOSE
LEARNINGS WITH EACH OTHER, I
THINK IS VERY IMPORTANT.
I KNOW OUR PROGRAM STAFFER IS
MAKING SURE THIS STAYS FRONT AND
CENTER AND CONTINUES TO BE
SOMETHING THAT WE PROMOTE AND
SUPPORT THE EVOLUTION OF IT.
GO AHEAD, ANNIE.
>> AND THIS WHOLE THING ABOUT
HOW PEOPLE ARE USING THE
ADVOCATES AND DIFFERENT SCIENCE,
DIFFERENT RESEARCH MAY REQUIRE
DIFFERENT THINGS, RIGHT, AND
DIFFERENT RESEARCHERS MAY HAVE
DIFFERENT EXPERIENCE LEVELS AS
TO WHAT LEE WAS SAYING, WORKING
WITH ADVOCATES AND HOW ADVOCATES
CAN INFORM AND BRING INSIGHTS
TOLL THEIR WORK.
I WAS REALLY EXCITED TO HEAR
THAT THE ADVOCACY PANEL HELPS
THE APPLICANTS WITH FEEDBACK ON
HOW TO BETTER USE THEIR
ADVOCATES OR BETTER INVOLVE --
I'M GOING TO GET USED TO THE NEW
TERMINOLOGY HERE, BETTER INVOLVE
ADVOCATES IN THE WORK, BUT I'M
WONDERING IF THERE'S OPPORTUNITY
HERE AT NCI FOR -- I KNOW THAT
LIKE WITH THE SPORES, I'M ON TWO
SPORES AND FROM WHAT I HEAR,
MANY OF THE SPORES ENGAGE OR
INVOLVE THEIR ADVOCATE IN
DIFFERENT WAYS, AND WHEN THERE
ARE APPLICATIONS OF THAT NATURE,
IF THERE'S OPPORTUNITY FOR OUR
BOARD OR SOMETHING SIMILAR TO
PROVIDE THAT FEEDBACK, AND HOW
TO REALLY ENGAGE OUR ADVOCATES
BETTER TO HELP WITH THE WORK.
BUT THAT PART REALLY GOT ME
EXCITED, THAT YOU GAVE FEEDBACK,
YOU SAW CHANGES AND THEN THE
APPLICATION LOOKED AMAZING.
WE'RE ABOUT OUT OF TIME, BUT
JOYA, IF IT'S QUICK.
>> IT'S QUICK.
JUST PROBABLY DOESN'T
NECESSARILY NEED TO BE SAID BUT
TO AMY'S POINT AND VICKIE'S
QUESTION, JUST BEFORE THIS CALL
I GOT OFF A CALL WITH ANDREA
DELGADO GARCIA, MYSELF AND SOME
OTHER ADVOCATES FOR A SUBGROUP
FOR TRAINING FOR -- ON PATIENT
ADVOCACY.
SO IT'S NICE TO BE ABLE TO SAY
OKAY, WE HAD THIS GROUP OF
PEOPLE, WE HAVE THESE
RESEARCHERS AND THESE PATIENT
ADVOCATES, HOW CAN WE PULL A
GROUP TOGETHER TO HELP DEVELOP A
TRAINING AND HOW DO WE UTILIZE
THIS EXPERTISE.
SO IT'S COMPRISED OF A NICE
GROUP OF US INCLUDING OUR
ADVOCACY PANEL MEMBERS AND SOME
FUTURE LEADERS FROM TWO
DIFFERENT TEAMS THAT ARE PART OF
THIS SUBGROUP, TO HELP CREATE
TRAINING, TO HELP RESEARCHERS
AND PATIENT ADVOCATES BETTER
UNDERSTAND WHAT IT MEANS TO BE
INVOLVED AND ENGAGED IN
ADVOCACY.
SO IT'S NICE TO BE ABLE TO
UTILIZE IN OTHER WAYS AS THE
NEED ARISES.
>> AND I'LL JUST COMMENT,
THERE'S A LOT OF WHAT TO DO OR
WHAT TO KNOW.
WHAT'S MISSION FOR ME IN A LOT
--WHAT'S MISSING FOR ME IN A LT
OF SPACES IS THE HOW.
IF YOU CAN GET THAT HOW IN THERE
MIGHT BE, YOU KNOW, EVEN MORE
IMPACTFUL.
>> I THINK THAT'S WHY THE
SHARING BETWEEN THE ADVOCATE
TEAMS, RIGHT, THE HOW IS ALWAYS
THE QUESTION.
>> IT'S NEBULOUS.
WELL, THANK YOU SO MUCH, ANDY,
AND TONY, FOR BEING HERE AND
SHARING, AND JOYA, YELAK AND
LEE, SHARING YOUR PERSONAL
EXPERIENCES BEING INVOLVED WITH
PATIENT ADVOCATES.
WE WERE -- THIS WAS VE A VERY
EXCITING DISCUSSION, AND NOW WE
HAVE -- I AM GOING TO INTRODUCE
MISS GIBBONS, WHO IS OUR -- HOLD
ON HERE -- DEPUTY DIRECTOR OF
NCI OFFICE OF GOVERNMENT AND
CONGRESSIONAL RELATIONS TO
DELIVER THE LEGISLATIVE REPORT.
THANK YOU SO MUCH FOR BEING WITH
US, HOLLY.
>> THANKS SO MUCH, ANNIE.
THANKS, EVERYONE, FOR HAVING ME.
WE CAN MOVE TO THE NEXT SLIDE.
SO TODAY, I'LL FOCUS THE BULK OF
MY UPDATE ON APPROPRIATIONS
ACTIVITY AND WHERE WE ARE IN THE
FY 2025 PROCESS.
I'LL HIGHLIGHT A FEW LEGISLATIVE
EFFORTS OF INTEREST WHICH ARE
COVERED IN MORE DETAIL IN YOUR
WRITTEN UPDATE, AND I'LL CLOSE
WITH SOME HIGHLIGHTS OF RECENT
CONGRESSIONAL ENGAGEMENT
INCLUDING FROM THE ADVOCACY
COMMUNITY.
SO TO RECAP, THE FY 24
APPROPRIATIONS WERE ENACTED
ABOUT HALFWAY INTO THE FISCAL
YEAR IN MARCH, AND WE WERE
ENCOURAGED TO SEE THAT CONGRESS
PROVIDED A BASE INCREASE FOR NCI
OF $120 MILLION.
THIS WAS PARTICULARLY
SIGNIFICANT AND A SHOW OF
BIPARTISAN SUPPORT IN THE FACE
OF VERY CHALLENGING BUDGET CUTS
WHICH WE DISCUSSED AT OUR LAST
MEETING.
ADDITIONALLY BECAUSE FY 23 WAS
THE LAST YEAR OF MANDATORY
FUNDING FOR THE CANCER MOONSHOT
AUTHORIZED UNDER THE 21ST
CENTURY CURES ACT, NCI'S OVERALL
BUDGET EXPERIENCE EXPERIENCED A
NET $96 MILLION BUDGET DECREASE.
SO THOSE CAPS ARE IN PLACE AGAIN
FOR 2025.
THEY ALLOW -- HOWEVER BECAUSE OF
DECISIONS MADE IN THE FY 24
PROCESS, THERE WILL BE EVEN
FEWER RESOURCES AVAILABLE FOR
NON-DEFENSE DISCRETIONARY FUNDS,
THE CATEGORY THAT NIH AND NCI
ARE A PART.
SO FOR FY 25, IT WILL BE EQUALLY
IF NOT MORE CHALLENGING FOR
APPROPRIATORS TO NAVIGATE.
THIS IS JUST MY REGULAR REMINDER
OF WHERE WE ARE IN THE CURRENT
PROCESS.
FOR FY 25, WHICH WILL BEGIN ON
OCTOBER 1ST, WE'RE RIGHT IN THE
MIDDLE OF THE APPROPRIATIONS
PROCESS.
THE SUBCOMMITTEES ARE WORKING ON
THEIR BILLS, WHICH I'LL TALK
ABOUT MORE IN A MOMENT.
AND SINCE WE MET LAST, THERE'S
BEEN A SIGNIFICANT LEADERSHIP
TRANSITION IN THE HOUSE.
FORMER APPROPRIATIONS CHAIR OF
TEXAS IS RETIRING FROM CONGRESS
AND RETIRED FROM HER POST AS
CHAIR OF THE FULL HOUSE
APPROPRIATIONS COMMITTEE AHEAD
OF THE FY '25 PROCESS.
CONGRESSMAN TOM CO COLE OF OKLAA
PICTURED HERE WAS ELECTED TO
THIS POSITION.
FORMER CHAIR AND RANK MEMBER OF
THE LABOR HHS SUBCOMMITTEE AND
IS STRONG ADVOCATE FOR THE
IMPORTANCE OF INVESTMENT IN
BIOMEDICAL RESEARCH INCLUDING
CANCER RESEARCH.
SO FOR MANY YEARS, CONGRESSMAN
COLE HAS ADVOCATED FOR SUSTAINED
INVESTMENTS IN BIOMEDICAL
RESEARCH.
HE'S ALSO EMPHASIZED THE
IMPORTANCE OF THESE INVESTMENTS
FOR NATIONAL SECURITY.
HE'S QUOTED HERE IN 2017,
SEVERAL YEARS AHEAD OF THE
COVID-19 PANDEMIC, STRESSING THE
ROLE THE SUSTAINED INVESTMENTS
PLAY IN PANDEMIC PREPAREDNESS.
SO IT WILL BE INTERESTING TO SEE
THE APPROACH HE TAKES AS CHAIR
AND THE INPUT HE HAS IN THE
FINAL PROPOSALS FOR NIH AND
OTHER BIOMEDICAL RESEARCH
INVESTMENTS.
SO JUST THIS MORNING, CHAIR OF
THE HOUSE LABOR HHS COMMITTEE
RELEASED AN INITIAL 25 BILL
AHEAD OF A SUBCOMMITTEE MARKUP
SCHEDULED TOMORROW.
THIS ECHOES HIS LONG-STANDING
SUPPORT FOR BIOMEDICAL RESEARCH.
THE BILL ADDRESSES MANY OTHER
GOP PRIORITIES.
IT INCLUDES SEVERAL CONTENTIOUS
POLICY RIDERS AND IT IS NOT A
BIPARTISAN PROPOSAL.
IT'S EXPECTED TO MOVE OUT OF THE
SUBCOMMITTEE TOMORROW ALONG
PARTY LINES, WITHOUT DEMOCRATIC
SUPPORT.
A FEW OTHER KEY TAKEAWAYS AND
THINGS TO KEEP IN MIND, AGAIN,
THE HOUSE LABOR HHS BILL IS
WRITTEN TO A TOP LINE LEVEL THAT
IS ACTUALLY BELOW FY 24 ENACTED
LEVELS.
FOR EXAMPLE, THE PROPOSED
DISCRETIONARY TOTAL FOR
DEPARTMENT OF HEALTH AND HUMAN
SERVICES WITHIN THE BILL IS 7%
BELOW THE FY 24 ENACTED LEVEL.
SO WITHIN THE HOUSE PROPOSAL, IT
PROPOSES ROUGHLY FLAT FUNDING
FOR NIH AT APPROXIMATELY
$48 BILLION.
IT PROPOSES $7.875 BILLION FOR
NCI, AND THIS DOES REPRESENT A
PROPOSED INCREASE FOR NCI OF
APPROXIMATELY $655 MILLION.
HOWEVER, THE PROPOSED INCREASE
IS A RESULT OF PROPOSED
RESTRUCTURING WITHIN NIH, WHICH
I'LL COME BACK TO LATER, AND
IT'S UNCLEAR WHETHER THE SENATE
WILL SUPPORT THIS APPROACH.
SO MOVING OVER TO THE SENATE
SIDE, THE LABOR HHS
APPROPRIATION SUBCOMMITTEE HELD
A HEARING ON MAY 23RD TO
CONSIDER THE PRESIDENT'S FY 25
NIH BUDGET REQUEST.
FIVE INSTITUTE AND CENTER
DIRECTORS ACCOMPANIED
DR. BERTAGNOLLI.
INCLUDING DID RATHMELL
REPRESENTING NCI AS WELL AS
CORRECTORS OF THE NATIONAL
INSTITUTE ON DRUG ABUSE, THE
NATIONAL INSTITUTE ON AGING, THE
NATIONAL INSTITUTE ON ALLERGY
AND INFECTIOUS DISEASE, AND THE
NATIONAL HEART, LUNG AND BLOOD
INSTITUTE.
IT WAS THE FIRST APPROPRIATIONS
HEARING FOR DR. BERTAGNOLLI, DR,
AND OVERALL IT WAS A POSITIVE
AND BIPARTISAN HEARING WITH
SENATORS FROM BOTH PARTIES
EMPHASIZING THE IMPORTANCE OF
BIOMEDICAL RESEARCH AND RAISING
QUESTIONS FOCUSED ON SPECIFIC
AREAS OF INTEREST, INCLUDING
ACCESS TO CANCER CLINICAL TRIALS
IN RURAL AREAS, ALZHEIMER'S
RESEARCH, OPIOID RESEARCH, LONG
COVID AND MORE.
SO HERE'S THE CONGRESSIONAL
CALENDAR AND WHAT TO EXPECT IN
THE COMING MONTHS.
I FLAGGED SEVERAL DATES WITH
SPECIFIC RELEVANCE TO THE
APPROPRIATIONS PROCESS.
TOMORROW, AGAIN, JUNE 27TH, THE
HOUSE LABOR HHS APPROPRIATIONS
SUBCOMMITTEE WILL MARK UP ITS
BILL.
THE SENATE PLANS TO BEGIN
MARKING UP BILLS THE WEEK OF
JULY 8TH.
THE FULL HOUSE APPROPRIATIONS
COMMITTEE IS SCHEDULED TO MARK
UP THE LABOR HHS BILL ON
JULY 10TH.
AND THE FINAL HOUSE BILL IS
CURRENTLY SCHEDULED FOR A FLOOR
VOTE THE WEEK OF JULY 29TH.
ALL OF THIS ACTIVITY WILL BE
FOLLOWED BY THE AUGUST RECESS.
CONGRESS WILL BE BACK FOR A BUSY
SEPTEMBER, WHERE WE EXPECT TO
SEE CONTINUED APPROPRIATIONS
ACTIVITY AND THE CLOSE OF THE
FISCAL YEAR ON SEPTEMBER 30TH.
HOWEVER, IT'S UNLIKELY THAT FY
25 APPROPRIATIONS WILL BE
ENACTED ON TIME AND WE DO EXPECT
TO SEE A CONTINUING RESOLUTION
THAT WILL CARRY US PAST THE
NOVEMBER ELECTION AND INTO THE
LAME DUCK SESSION OF CONGRESS
WHICH BEGINS ON NOVEMBER 12TH.
AND THE LAME DUCK SESSION RUNS
UNTIL THE NEW CONGRESS IS SWORN
IN ON JANUARY 3RD OF 2025.
SO THIS IS JUST A QUICK VISUAL
OF TRENDS OVER TIME DURING LAME
DUCK SESSIONS OF CONGRESS AND
YOU CAN COME BACK TO IT FOR A
CLOSER LOOK.
BLUE MEANS BILLS WERE ENACTED
BEFORE THE LAME DUCK SESSION,
ORANGE MEANS THEY WERE ENACTED
DURING AND GREEN WERE ENACTED
AFTER THE LAME DUCK SESSION.
SO YOU'LL SEE HERE IN 2020 AND
2022, ALL OF THE APPROPRIATIONS
BILLS WERE ENACTED DURING THE
LAME DUCK SESSION.
SO JUST TO RECAP, WE DO EXPECT A
CR UNTIL AFTER THE ELECTION, AND
THE LAST TWO LAME DUCK SESSIONS
CONGRESS DID ENACT
APPROPRIATIONS BILLS.
IN 2016 AND 2018, HOWEVER, MANY
BILLS WERE ENACTED AFTER THE
LAME DUCK SESSION.
AND SO WE'LL HAVE TO WAIT AND
SEE WHAT HAPPENS IN NOVEMBER AND
DECEMBER.
I'M GOING TO SHIFT TO BIT TO
FOCUS ON A LESS SPECULATIVE
TOPIC.
WE'LL HIGHLIGHT SOME RECENT
CONGRESSIONAL ENGAGEMENT.
LAST MONTH NCI'S DR. SANYA
SPRINGFIELD, DIRECTOR OF NCI'S
CENTER TO REDUCE CANCER HEALTH
DISPARITIES, SPOKE AT A
CONGRESSIONAL BRIEFING HOSTED BY
THE AMERICAN ASSOCIATION FOR
CANCER RESEARCH TO HIGHLIGHT THE
RELEASE OF THE AAC REPUBLICAN
SER DISPARITIES PROGRESS REPORT.
NCI ALSO HOSTED CONGRESSIONAL
STAFF FOR A VISIT FOCUSED ON
CHILDHOOD CANCER RESEARCH.
STAFF MET WITH EXTRAMURAL
PROGRAM LEADERS, NCI PEDIATRIC
ONCOLOGY BRANCH LEADERSHIP, AND
TOURED TWO PEDIATRIC ONCOLOGY
BRANCH LABS AND MET WITH TWO
PATIENTS.
THEY ALSO VISITED THE CHILDREN'S
INN AT NIH WHERE CHILDREN AND
THEIR FAMILIES STAY ON THE NIH
CAMPUS AS THEY PARTICIPATE IN
NIH STUDIES AT THE CLINICAL
CENTER.
DR. RATHMELLED THE
GROUP AT RATHMELL JOINED THEGRO.
DR. RATHMELL HAS CONTINUED TO
MEET WITH MEMBERS OF CONGRESS.
SHE'S PICTURED HERE IN THE TOP
LEFT WITH DR. BERTAGNOLLI AND
CONGRESSWOMAN ROSA DELAURO OF
CONNECTICUT WHO SERVES AS
RANKING MEMBER.
BELOW THAT, THE CHAIRMAN OF THE
LABOR HHS SUBCOMMITTEE,
CONGRESSMAN ADERHOLT FROM
ALABAMA, AND SENATOR TAMMY
BALDWIN OF WISCONSIN.
TO THE RIGHT SHE'S PICTURED WITH
CONGRESSMAN JOE MORELLE, AND AS
HE REFERENCES AFTER A TWEET, HE
HAS A DEEPLY PERSONAL CONNECTION
TO CANCER AS HE LOST HIS
DAUGHTER TO BREAST CANCER WHEN
SHE WAS ONLY 31 YEARS OLD.
IN THE INTEREST OF TIME, I'LL
MOVE THROUGH THE NEXT FEW SLIDES
FAIRLY QUICKLY.
AGAIN MORE INFORMATION IS
INCLUDED IN YOUR WRITTEN UPDATE.
THERE ARE SEVERAL LEGISLATIVE
PROPOSALS PENDING IN ONGOING
CONGRESSIONAL COMMITTEE ACTIVITY
FOCUSED ON ISSUES INCLUDING
TELEHEALTH EXTENSIONS, DRUG
SHORTAGES, OPPORTUNITIES TO
IMPROVE ACCESS TO AND CONDUCT OF
CLINICAL TRIALS, AND THE ROLE OF
ARTIFICIAL INTELLIGENCE BOTH IN
BIOMEDICAL RESEARCH AND IN OTHER
SECTORS, AS WELL AS POTENTIAL
LEGISLATION FOCUSED ON NIH'S
STRUCTURE AND OPERATIONS.
SO THERE HAS BEEN BICAMERAL
INTEREST AMONG REPUBLICAN
MEMBERS OF CONGRESS TO --
SENATOR BILL CASSIDY OF
LOUISIANA RELEASED A PUBLIC
REQUEST FOR INFORMATION ON
POLICIES CONGRESS COULD CONSIDER
TO MODERNIZE NIH.
IN HIS WORDS, SO THAT IT IS MORE
TRANSPARENT, NIMBLE AND
FORWARD-THINKING.
LAST MONTH HE RELEASED A WHITE
PAPER PICTURED HERE SUMMARIZING
PUBLIC COMMENTS AND OUTLINING
PROPOSED POLICY CHANGES TO
ADDRESS SEVERAL AREAS, INCLUDING
RESEARCH PRIORITIZATION AND
PORTFOLIO BALANCE, SUSTAINING
U.S. COMPETITIVE ADVANTAGE, AND
OPPORTUNITIES TO STREAMLINE PEER
REVIEW.
IN THE HOUSE EARLIER THIS MONTH
ON JUNE 14TH, THE HOUSE
COMMITTEE ON ENERGY AND COMMERCE
CHAIR CATHY MACK MORRIS RODGERS
RELEASED A FRAMEWORK FOR NIH
REFORM, EMPHASIZING THAT THE
FRAMEWORK IS A STARTING POINT
FOR DISCUSSION.
THE FRAMEWORK PROPOSES SEVERAL
STRUCTURAL AND POLICY REFORMS
INCLUDING CONSOLIDATING NIH'S 27
INSTITUTES AND CENTERS OR ICs
INTO 15 NEW ICs WITH THE GOAL
AS THE CONGRESSMAN STATES TO
BETTER ALIGN THE MISSIONS OF
EACH INSTITUTE AND CENTER.
NOTABLY, NCI, THE NATIONAL
INSTITUTE ON MENTAL HEALTH, AND
THE NATIONAL INSTITUTE ON AGING
WOULD NOT BE RESTRUCTURED.
SO THE INITIAL HOUSE LABOR HHS
APPROPRIATIONS BILL THAT
REPRESENTATIVE ADERHOLT RELEASED
THIS MORNING MIRRORS
CONSOLIDATION FROM ICs FROM 27
TO 15 AND JUST AS THE FRAMEWORK
IS A STARTING POINT FOR
DISCUSSION, THE APPROPRIATIONS
SUBCOMMITTEE PROPOSALS IN EACH
CHAMBER ARE TYPICALLY A STARTING
POINT FOR NEGOTIATIONS SO WE'LL
NEED TO WAIT AND SEE HOW THE
PROCESS PLAYS OUT, BOTH WITHIN
THE ENERGY AND COMMERCE
COMMITTEE AND WITHIN THE
APPROPRIATIONS COMMITTEES.
ADDITIONALLY ON THE HOUSE SIDE,
A BIPARTISAN EFFORT CONTINUES TO
EXPLORE OPPORTUNITIES TO EXPAND
UPON THE 21ST CENTURY CURES ACT,
WHICH ORIGINALLY AUTHORIZED
FUNDS FOR THE CANCER MOONSHOT AN
SEVERAL OTHER RESEARCH EFFORTS
AT NIH SUCH AS THE ALL-OF-US
RESEARCH PROGRAM AND THE BRAIN
INITIATIVE.
REPRESENTATIVE DIANA DEGETTE,
DEMOCRAT OF COLORADO WAS
ORIGINAL LEAD SPONSOR OF 21ST
CENTURY CURES AND OF A RECENT
CURES 2.0 PROPOSAL.
SHE'S PARTNERING WITH
REPRESENTATIVE LARRY BUCSHON,
INDIANA, INCLUDING THE
ESTABLISHMENT OF ARPA-H AND
SEVERAL FDA-FOCUSED PROVISIONS
WERE ACCOMPLISHED THROUGH OTHER
LEGISLATIVE AND EXECUTIVE
ACTIONS, SO CONGRESSWOMAN
DEGETTE AND CONGRESSMAN BUCSHON
ARE SPEAKING INPUT ON POLICIES
TO MOVE THE SECTORS FORWARD.
SO EARLIER I HIGHLIGHTED SEVERAL
EXAMPLES OF NCI'S ENGAGEMENT
WITH MEMBERS OF CONGRESS AND
THEIR STAFF.
AND I ALSO WANT TO TAKE A MOMENT
TO ACKNOWLEDGE THE BROADER
COMMUNITIES ENGAGEMENT AND
OUTREACH TO ENSURE THAT CONGRESS
IS AWARE OF THE IMPORTANT
RESEARCH EFFORTS UNDERWAY ACROSS
THE COUNTRY THAT ARE ENABLED BY
THEIR INVESTMENTS IN NIH AND
NCI.
HERE YOU'LL SEE THE ASSOCIATION
OF AMERICAN CANCER INSTITUTES
AND THE AMERICAN ASSOCIATION FOR
CANCER RESEARCH HOSTED THEIR
ANNUAL HILL DAY IN MAY.
ADDITIONALLY DR. RATHMELL
HAPPENED TO RUN INTO ASCO
COLLEAGUES IN APRIL WHILE THEY
WERE AT THEIR HILL DAY AND SHE
WAS ON THE HILL TO MEET WITH
REPRESENTATIVE MORELLI.
SHE ALSO -- JUST WANTED TO
EMPHASIZE THAT WE REALLY DO
APPRECIATE THE ADVOCACY
COMMUNITY'S ENGAGEMENT WITH NCI
AND WITH CONGRESS.
THANK YOU, I WILL END THERE AND
I HOPE YOU HAVE A LITTLE BIT OF
TIME FOR QUESTIONS.
MY CONTACT INFORMATION IS ON THE
NEXT SLIDE, SO PLEASE FEEL FREE
TO REACH OUT ANY TIME IF THERE
ARE QUESTIONS WE DON'T GET TO
TODAY.
>> THANK YOU SO MUCH, HOLLY, AS
ALWAYS FOR JUST COMPREHENSIVELY
PRESENTING TO US ALL THE
COMPLEXITY OF BUDGETING AND THE
DISCUSSIONS HAPPENING UP ON THE
HILL, ESPECIALLY THINGS THAT ARE
HAPPENING JUST THIS MORNING.
IT'S REALLY GREAT TO HEAR THAT.
SO ARE WE ANTICIPATING THAT FY
2025 BUDGET WILL GET COMPLETED
OR ARE WE LOOKING FOR ANOTHER
ROUND OF CONTINUING RESOLUTIONS?
>> WE WILL CERTAINLY AT LEAST
SEE THAT FIRST CONTINUING
RESOLUTION TO CARRY US AFTER THE
ELECTION.
CONGRESSMAN COLE, CHAIR OF THE
HOUSE APPROPRIATIONS COMMITTEE,
HAS ALREADY STATED THAT THAT IS
HIS PLAN, AND SO I THINK IT'S
SAFE TO SAY THAT WE WILL AT
LEAST HAVE ONE, BUT I THINK IT'S
LIKELY THAT WE MAY HAVE MORE
EITHER BRINGING US THROUGH THE
END OF THE LAME DUCK SESSION OR,
IF THEY'RE NOT ABLE TO COMPLETE
THEIR WORK, INTO THE NEW
CONGRESS.
>> THANKS.
AND MARTY, YOU HAVE A QUESTION?
>> YES, I DO.
THANKS SO MUCH FOR THAT REPORT.
THAT WAS REALLY INTERESTING.
MY QUESTION IS ABOUT CATHY
MCMORRIS RODGERS' PLAN TO
RESTRUCTURE, AND YOU MENTIONED
THAT WAS IN CONJUNCTION WITH
ANOTHER CONGRESSPERSON.
IS THAT A BIPARTISAN APPROACH OR
IS IT NOT?
>> NO, IT'S NOT A BIPARTISAN
APPROACH.
IT WAS ANNOUNCED IN PARTNERSHIP
WITH CONGRESSMAN ADERHOLT WHO IS
THE CHAIR OF OUR APPROPRIATIONS
SUBCOMMITTEE, AND SO THAT'S WHY
YOU'LL SEE AT LEAST STRUCTURALLY
A LOT OF THOSE PROPOSALS FOR
CONSOLIDATING INSTITUTES AND
CENTERS ARE REFLECTED IN
CONGRESSMAN ADERHOLT'S PROPOSAL
THAT WAS RELEASED THIS MORNING
FOR FY 25.
SO THIS WAS A REPUBLICAN
PROPOSAL FROM THE REPUBLICAN
CHAIR OF ENERGY AND COMMERCE,
REPUBLICAN CHAIR OF LABOR HHS
SUBCOMMITTEE AND THEIR
COLLEAGUES HAVE HAD INPUT, AND
NOW THEY'RE SOLICITING PUBLIC
INPUT AS WELL, BUT IT IS NOT --
SO FAR IT IS NOT A BIPARTISAN
APPROACH, SO WE'LL SEE HOW
THINGS MOVE FORWARD.
>> THANK YOU.
>> YOU'RE WELCOME.
>> AND THANK YOU AGAIN, HOLLY.
IF THERE ARE NO FURTHER
QUESTIONS, I SEE THAT
DR. RATHMELL WAS ABLE TO JOIN US
EARLY AND IN THE INTEREST OF THE
BEST USE OF HER TIME, WE'RE
SCHEDULED FOR A BREAK.
IT WAS SUPPOSED TO BE 15
MINUTES.
DO WE THINK WE CAN DO IT IN 10,
GROUP?
10 MINUTES?
OKAY.
SO LET'S BE BACK AT EXACTLY 1:4D
THEN WE CAN HAVE THE REST OF OUR
SESSION.
THANK YOU SO MUCH, EVERYBODY,
AND WE'LL SEE YOU IN ABOUT 10 MINUTES.
THANK YOU FOR TAKING A QUICK
BREAK, EVERYONE.
I WILL NOW CALL THE MEETING BACK
TO ORDER.
THANK YOU FOR BEING BRIEF.
NEXT UP, WE HAVE A PRESENTATION
ON SURVIVORSHIP PLANNING, AND WE
HAVE DR. MICHELLE MOLLICA,
DEPUTY DIRECTOR OF NCI'S OFFICE
OF CANCER SURVIVORSHIP, TO GIVE
US HER PRESENTATION.
THANK YOU SO MUCH FOR SPENDING
TIME WITH US TODAY, MICHELLE.
>> THANK YOU VERY MUCH FOR THE
INVITATION, AND IT'S A PLEASURE
TO BE HERE WITH YOU ALL TODAY.
SO I WILL BE TALKING A BIT ABOUT
A NEWLY DEVELOPED SET OF
NATIONAL STANDARD FOR CANCER
SURVIVORSHIP CARE.
IN TODAY'S TALK, I'M JUST GOING
TO START BY PROVIDING A BIT OF
BACKGROUND INCLUDING SOME
PREVIOUS EFFORTS WE'VE
UNDERTAKEN IN SURVIVORSHIP CARE
ACROSS THE LAST FEW DECADES.
I'LL TALK ABOUT THE PROCESS FOR
DEVELOPING THESE NA NATIONAL
STANDARDS, I'LL PROVIDE AN
OVERVIEW AND TALK ABOUT NEXT
STEPS.
SO I WILL START JUST BY
CENTERING US ALL ON THE
DEFINITION OF CANCER SURVIVORS.
SO THE NCI RECOGNIZES ANY
INDIVIDUAL AS A CANCER SURVIVOR
FROM THE TIME OF DIAGNOSIS
THROUGH THE BALANCE OF LIFE.
COLLECTIVELY, THERE ARE OVER
18 MILLION CANCER SURVIVORS IN
THE U.S., LIVING BOTH WITH AND
AFTER A CANCER DIAGNOSIS.
WE KNOW THAT CANCER SURVIVORSHIP
CARE IS COMPLEX.
THESE ARE A FEW OF THE MANY
RECOMMENDATIONS FOR CANCER
SURVIVORS, AND I DON'T NEED TO
TELL ALL OF YOU HOW COMPLEX
SURVIVORSHIP CARE IS, BUT IT
INCLUDES THINGS LIKE PREVENTION
AND SURVEILLANCE FOR RECURRENCE,
SURVEILLANCE AND MANAGEMENT OF
PHYSICAL EFFECTS, PSYCHOSOCIAL
EFFECTS, PROMOTING HEALTHY
LIFESTYLE BEHAVIORS LIKE
PHYSICAL ACTIVITY AND NUTRITION,
IDENTIFYING AND MANAGING
COMORBIDITIES, SCREENING FOR
SUBSEQUENT CANCERS, MONITORING
MENTAL WELL-BEING, AS WELL AS
COORDINATING CARE OFTEN AMONG
AMONG MULTIPLE PROVIDERS.
THERE HAVE BEEN SEVERAL PREVIOUS
EFFORTS TO INFORM SURVIVORSHIP
CARE OR THE DELIVERY OF QUALITY
CARE AFTER A CANCER DIAGNOSIS.
WE HAVE SEVERAL SURVIVORSHIP
GUIDELINES, THE NATIONAL
COALITION, THE NCC NHAS A
GENERAL SET OF SURVIVORSHIP
GUIDELINES, AS WELL AS SOME
CANCER-SPECIFIC GUIDELINES IN
BREAST AND COLORECTAL CANCER.
WE ALSO HAVE CHILDREN'S LATE AND
LONG-TERM GUIDELINES FROM THE
CHILDREN'S ONCOLOGY GROUP, THE
LIVESTRONG ESSENTIAL ELEMENTS
WAS AN EFFORT IN 2011 TO DEFINE
POST-TREATMENT SURVIVORSHIP
CARE, AND WHAT YOU SEE ON THE
RIGHT-HAND SIDE IS THE QUALITY
OF SURVIVORSHIP CARE FRAMEWORK.
ONE OF OUR COLLEAGUES LED THE
DEVELOPMENT OF THIS WITH SEVERAL
NCI COLLEAGUES, AND THIS WAS
REALLY JUST TO DEFINE THE KEY
COMPONENTS OF SURVIVORSHIP CARE.
AND THEN MANY OF YOU MAY BE
FAMILIAR WITH THE COMMISSION ON
CANCER STANDARDS AT COMMISSION
ON CANCER ACCREDITED
INSTITUTIONS, AND WE HAVE A
SPECIFIC SURVIVORSHIP STANDARD
THAT WAS RECENTLY UPDATED IN
2019.
IT PREVIOUSLY REQUIRED A
SURVIVORSHIP CARE PLAN, SO A
SUMMARY OF TREATMENT AND CANCER
HISTORY AS WELL AS FOLLOW-UP
CARE GUIDELINES OR
RECOMMENDATIONS.
IT WAS UPDATED TO FOCUS MORE ON
SURVIVORSHIP CARE PROGRAMS AND
REQUIRED A SURVIVORSHIP CARE
COORDINATOR AT EACH COC
ACCREDITED SITE, AS WELL AS AT
LEAST THREE PROGRAMS OR SERVICES
FOR SURVIVORS, SO A LITTLE BIT
MORE FLEXIBILITY.
AND YOU CAN GO AHEAD AND GO TO
THE NEXT SLIDE.
BUT OVERALL, SURVIVOR SHIP CARE
IN THE U.S. IS VARIABLE AND
OFTEN SUBOPTIMAL.
SO ALTHOUGH WE HAVE SURVIVORSHIP
GUIDELINES, THEY EXIST BUT ARE
NOT SYSTEMATICALLY IMPLEMENTED.
THE DELIVERY OF SURVIVORSHIP
CARE OFTEN VARIES GREATLY BASED
ON WHERE THE SURVIVOR LIVES, THE
RESOURCES OF THE HEALTH SYSTEM,
PROVIDER PREFERENCES AND
RESOURCES OF THE PROVIDER, AND
THE LACK OF CONSISTENT
SURVIVORSHIP CARE OFTEN LEADS TO
SURVIVORS WITH UNMET NEEDS, WITH
POOR HEALTH OUTCOMES AND WITH
ISSUES ACCESSING QUALITY CARE.
SO THE GOAL OF THIS PROJECT WAS
TO DEVELOP A SET OF NATIONAL
STANDARDS FOR SURVIVORSHIP CARE,
AND THAT INCLUDES ESSENTIAL
HEALTH SYSTEM PROCESSES AND
POLICY COMPONENTS, AS WELL AS
THE ASSESSMENT OF THE QUALITY OF
SURVIVOR SHSHIP CARE.
AND I JUST WANTED TO DEFINE WHAT
WE MEAN WHEN WE SAY A STANDARD,
SO YOU'VE HEARD ME SAY
GUIDELINES A FEW TIMES, SO
GUIDELINES OR CLINICAL
GUIDELINES ARE RECOMMENDATIONS
BASED ON THE EVIDENCE THAT
PROVIDERS SHOULD PROVIDE TO GIVE
OPTIMAL PATIENT CARE, SO
SPECIFIC SETS OF RECOMMENDATIONS
FOR THAT INDIVIDUAL.
WHEN WE TALK ABOUT STANDARDS,
WE'RE TALKING ABOUT
RECOMMENDATIONS FOR THE HEALTH
SYSTEM THAT APPLY TO THE
PATIENTS THEY SERVE OR THE
SURVIVORS THEY SERVE.
SO I MENTIONED THREE DISTINCT
AREAS IN OUR STANDARDS.
AND I JUST WANT WANT TO DEFINE E
FOR YOU HERE.
HEALTH SYSTEM POLICY ARE
PRINCIPLES AND PROCEDURES THAT
GUIDE AN ORGANIZATION'S CAPACITY
AND STRUCTURE TO PROVIDE
SURVIVORSHIP CARE.
PROCESSES ARE THE CAPACITY TO
DELIVER CARE THROUGH ITS
EMBEDDED PRACTICES AND
PROCEDURES.
AND ASSESSMENT AND EVALUATION IS
MEASURING THE IMPACT OF
SURVIVORSHIP CARE WITHIN AN
ORGANIZATION.
I WANT TO ACKNOWLEDGE THAT THIS
PROJECT WAS UNDERTAKEN AS PART
OF THE BIDEN CANCER MOONSHOT AND
PART OF THE CANCER CABINET,
WHICH WAS AN ALL OF GOVERNMENT
APPROACH TO TACKLING ISSUES
RELATED TO CANCER, AND THE
CANCER CABINET CREATED A
SUPPORTING PATIENTS AND
CAREGIVERS TASK FORCE, AND THIS
WORK CAME OUT OF THAT.
SO WE ARE PART OF A SURVIVORSHIP
WORKING GROUP, AND YOU CAN SEE
THAT I WAS ONE OF THE CO-CHAIRS
ALONG WITH TWO COLLEAGUES AT THE
VETERANS AFFAIRS OR THE VA, WHO
ARE LEADING THE COMPREHENSIVE
SURVIVORSHIP PROGRAM WITHIN THE
VA SYSTEM.
AND I WANT TO ACKNOWLEDGE THAT
THERE ARE SEVERAL WORKING GROUP
MEMBERS FROM ACROSS THE
GOVERNMENT AGENCIES, INCLUDING
CDC, THE VA, USDA, CMS, FDA, AND
DEPARTMENT OF DEFENSE AS WELL AS
NCI.
SO OUR PROCESS FOR THIS IS WE
FIRST DID A LANDSCAPE REVIEW OF
ALL OF THE AVAILABLE INFORMATION
ON SURVIVORSHIP CARE, AND THAT
INCLUDES GUIDELINES, FRAME
WORKS, CANCER CONTROL PLANS,
INTERNATIONAL WORK, AND RELEVANT
LITERATURE.
AND WE IDENTIFIED POSSIBLE
INDICATORS IN EACH OF THOSE
THREE GROUPS, SO HEALTH SYSTEM
POLICIES, PR PROCESSES AND
ASSESSMENT AND EVALUATION.
WE THEN HELD THREE SUBJECT
MATTER EXPERT CONSENSUS
MEETINGS.
THOSE WERE VIRTUAL MEETINGS THAT
HAD SURVIVORSHIP SUBJECT MATTER
EXPERTS IN ATTENDANCE, AND THEY
WERE ALSO OPEN TO THE PUBLIC TO
SUBMIT PUBLIC COMMENT AND TO
COMMENT ON THOSE.
I'LL SHOW YOU THE LIST OF OUR
SUBJECT MATTER EXPERTS IN JUST A
SECOND, BUT ONE OF THE KEY
THINGS THAT WE TRIED TO DO WAS
INVOLVE SURVIVOR ADVOCATES AND
ADVOCACY GROUPS AS MUCH AS
POSSIBLE.
BECAUSE WE FEEL LIKE THAT IS ONE
OF THE MOST IMPORTANT STEPS IN
DEVELOPING STANDARDS THAT HEALTH
SYSTEMS SHOULD FOLLOW.
WE THEN CAME UP WITH A LIST OF
THE INDICATORS UNDER EACH OF
THOSE THREE AREAS OF POLICIES,
PROCESSES AND ASSESSMENT AND
EVALUATION, AND FINALIZED THE
STANDARDS IN COLLABORATION WITH
OUR SUBJECT MATTER EXPERTS.
WE'RE IN THE PROCESS OF PILOT
TESTING THOSE STANDARDS FOR
FEASIBILITY, I'LL TALK ABOUT
THAT IN JUST A SECOND, AND THEN
WORKING ON SOME FUTURE
DISSEMINATION AND EVALUATION
EFFORTS.
I HAVE TWO SLIDES THAT SHOW YOU
THE SUBJECT MATTER EXPERTS.
I WANT TO POINT OUT THAT SHELLEY
NASSO, NATIONAL COALIT COALITIOR
CANCER SURVIVORSHIP WAS ONE OF
OUR EXPERTS.
THEN MOLLY MAHER, AND A CANCER
SURVIVOR ADVOCATE.
IN ADDITION TO THAT, WE HAD A
VARIED AND MULTIDISCIPLINARY
TEAM OF SUBJECT MATTER EXPERTS
THAT SPANNED EVERYTHING FROM
SOCIAL WORK TO ONCOLOGY
PROVIDERS TO PRIMARY CARE.
WE REALLY TRIED TO REACH FAR AND
WIDE AND USE SORT OF A SNOWBALL
METHOD TO BE ABLE TO IDENTIFY
THE RIGHT PEOPLE AT THE TABLE,
AND WE WERE LUCKY THAT WE HAD
DIVERSE PERSPECTIVES.
SO ON THE NEXT THREE SLIDES, I'M
GOING TO SHOW YOU WHAT WE CAME
UP WITH FOR THE NATIONAL
STANDARDS FOR SURVIVORSHIP CARE.
SO HOW WE LAID THESE OUT WAS WE
IDENTIFIED 10 INDICATORS IN EACH
AREA FOR HEALTH SYSTEM POLICY
PROCESSES AND ASSESSMENT AND
EVALUATION.
WE HAVE A WEBSITE WITH ALL OF
THIS INFORMATION SO I DON'T WANT
TO READ THESE ALL FOR YOU, BUT I
WILL JUST SAY THAT WE
HIGHLIGHTED EVIDENCE-BASED CARE
THAT HEALTH SYSTEMS SHOULD BE
PROVIDING FOR SURVIVORS.
SO IN HEALTH SYSTEM POLICY, WE
INCLUDED THAT THE ORGANIZATION
HAS A POLICY THAT INCLUDES
ESTABLISHMENT OF A SURVIVORSHIP
PROGRAM, BUT IT GOES ALL THE WAY
DOWN IF YOU LOOK AT THE END,
SUBJECT MATTER EXPERTS FELT
REALLY STRONGLY ABOUT HAVING A
BUSINESS CASE OR A PLAN
INCLUDING A BUDGET AND FUNDING
ALLOCATED FOR SURVIVORSHIP CARE
TO BE ABLE TO POINT TO THE
SUSTAINABILITY FOR SURVIVORSHIP
CARE.
IN THE AREA OF PROCESSES, THE
INDICATORS INCLUDE THAT CANCER
SURVIVORS ARE PROVIDED WITH
ACCESS TO A SURVIVORSHIP PROGRAM
THAT THEY ARE ASSESSED AT
MULTIPLE TIME POINT FOR THINGS
LIKE PHYSICAL EFFECTS, EMOTIONAL
AND PSYCH LODGE CAL EFFECTS ALL
THE WAY DOWN TO ASSESSING FOR
FINANCIAL HARDSHIP OR TOXICITY
AND CONCERNS REGARDING INSURANCE
COVERAGE AND BEING ENGAGED IN
THE CARE PLANNING PROCESS,
ESPECIALLY THROUGHOUT THE
CONTINUUM OF CARE AS A SURVIVOR.
AND IN THE AREA OF HEALTH SYSTEM
EVALUATION AND ASSESSMENT THAT
THE ORGANIZATION HAS A PROCESS
TO COLLECT DATA ON THINGS LIKE
SURVIVORS PATIENT-REPORTED
OUTCOMES, QUALITY OF LIFE,
RETURN TO WORK AND PARTICIPATION
IN PAID AND UNPAID WORK AND
SCHOOL.
LU SEE THAT IT INCLUDES THINGS
LIKE SURVIVAL RATES, RATE OF
OCCURRENCE, RATE OF SEQUENCE
CANCERS.
THESE ARE THINGS THAT SUBJECT
MATTER EXPERTS FELT REALLY
STRONGLY WERE IMPORTANT AND
ASPIRATIONAL, BUT MOST HEALTH
SYSTEMS ARE NOT ADEQUATELY AND
SYSTEMATICALLY COLLECTING THIS
INFORMATION SO IT DEFINITELY IS
GOING TO TAKE A BIG LIFT FOR
HEALTH SYSTEMS TO BE ABLE TO DO
THIS.
I ALSO WANT TO POINT OUT THAT WE
INCLUDED CAREGIVERS' EXPERIENCE
AND UNMET NEEDS BECAUSE WE FEEL
THAT CAREGIVERS AND CARE
PARTNERS ARE IMPORTANT, AND KEY
STAKEHOLDERS IN THE SURVIVORSHIP
CARE QUALITY, AND THEN THE
NUMBER OF HEALTH PROFESSIONALS
TRAINED TO PROVIDE SURVIVORSHIP
CARE.
SO SOME OF OUR NEXT STEPS I
MENTIONED PILOT TESTING THE
STANDARDS, AND THIS IS WHERE WE
ARE CURRENTLY IN THE PROCESS.
THE VA DOES HAVE A COMPREHENSIVE
SURVIVORSHIP PROGRAM THAT THEY
ARE CURRENTLY FINALIZING TO WORK
ACROSS ALL VA SITES.
THEY ARE USING THESE STANDARDS
TO INFORM THE DEVELOPMENT OF
THEIR PROGRAM.
WE ALSO HOPE THAT HEALTH SYSTEMS
WILL ADAPT THE NATIONAL
STANDARDS TO THEIR SPECIFIC
CANCER SURVIVOR POPULATIONS AND
HEALTH SYSTEM NEEDS.
THE STANDARDS ARE AVAILABLE ON
OUR OFFICE OF CANCER
SURVIVORSHIP WEBSITE TO
HEALTHCARE ORGANIZATIONS SO THEY
CAN ASSESS EITHER EXISTING
PROGRAMS THAT THEY HAVE OR USE
TO INFORM THE DEVELOPMENT OF NEW
PROGRAMS.
AND WE RECENTLY PUBLISHED A
SUPPLEMENT NOTICE FOR
SUPPLEMENTS FOR CURRENTLY FUNDED
GRANTS FOCUSED ON ASSESSING AND
ENHANCING SURVIVORSHIP CARE.
THE GOAL HERE WAS TO HAVE HEALTH
SYSTEMS AND PROGRAMS ASSESS
ALIGNMENT WITH THE STANDARDS AND
IDENTIFY GAP AREAS WHERE THEY
CAN IMPROVE THEIR CARE.
WE'RE ALSO WORKING ON DEVELOPING
A TOOLKIT SO THAT HEALTH SYSTEMS
CAN USE RESOURCES AND HAVE
GUIDANCE IN IMPLEMENTING THE
STANDARDS AND WE HAVE A
CHECKLIST TOOL TO ASSESS
ALIGNMENT AND THEN THERE'S LOTS
OF ROOM IN THE AREA OF ADVANCING
RESEARCH AND POLICY, SO
EVALUATING SURVIVOR AND HEALTH
SYSTEM OUTCOMES RELATED TO
IMPLEMENTING THE STANDARDS, WE
HAVE LOTS OF WORK TO DO IN TERMS
OF GUIDING REIMBURSEMENT FOR
SURVIVORSHIP SERVICES AND
CREATING RESOURCES TO DO THAT,
AS WELL AS ALIGNING THE
STANDARDS WITH THE COC
SURVIVORSHIP STANDARD.
YOU'LL NOTICE THAT SOME OF
THE -- THE COC REQUIREMENTS
WOULD BE MET THROUGH
IMPLEMENTING THE STANDARDS, SO
WE HOPE TO ALIGN AND NOT MAKE
THEM DUPLICATIVE OR ONEROUS FOR
HEALTH SYSTEMS TO IMPLEMENT.
WE HAVE LOTS MORE RESOURCES ON
OUR OFFICE OF CANCER
SURVIVORSHIP WEBSITE.
HAPPY TO SHARE THESE AFTER THE
MEETING AS WELL AND THAT
INCLUDES THINGS LIKE Q & A
VIDEOS, WE HAVE ALL OF THE
VIDEOS FROM THE SUBJECT MATTER
EXPERT MEETINGS AND THERE WAS A
REALLY RICH DISCUSSION AMONG THE
EXPERTS AND LOTS MORE
INFORMATION.
AND I'LL END JUST BY SAYING THAT
IT IS NATIONAL CANCER SURVIVORS
MONTH AND WE'VE DONE SEVERAL
DIFFERENT THINGS TO TRY TO
HIGHLIGHT THE IMPORTANCE OF
SURVIVOR VOICES AND PERSPECTIVES
FROM SURVIVORS AND ADVOCATE.
WE HAD A RECENT WEBINAR THAT
FEATURED A PANEL OF FOUR CANCER
SURVIVOR ADVOCATES.
DR. RATHMELL WAS GRACIOUS ENOUGH
TO PROVIDE THE INTRO FOR THAT
WEBINAR.
WE WERE VERY THANKFUL FOR THAT.
WE HAVE NEW CANCER SURVIVOR
STORIES AND MS. ELLIS IS ONE OF
OUR FEATURED CANCER SURVIVORS ON
THE SURVIVOR STORIES.
IT IS ONE OF OUR MOST VISITED
PAGES ON OUR OCS WEBSITE, AND WE
HAVE SEVERAL SPECIAL TOPIC
AREAS.
WE HIGHLIGHT FOCUS AREAS IN
RESEARCH THAT WERE FOCUSED ON,
INCLUDING THE STANDARDS BUT ALSO
FOCUSED ON HEALTH EQUITY AND
HEALTH DISPARITIES IN
SURVIVORSHIP, AND PRIMARY CARE
IN CANCER SURVIVORSHIP.
I WILL STOP THERE AND I'M VERY
HAPPY TO TAKE YOUR QUESTIONS.
THANK YOU SO MUCH FOR THE
OPPORTUNITY TO PRESENT TO YOU
TODAY.
>> THANK YOU SO MUCH,
DR. MOLLICA.
FOR THOSE OF US LUCKY ENOUGH TO
BE HERE, IT IS A VERY IMPORTANT
TOPIC.
LEE, YOU HAVE YOUR HAND UP.
>> YES.
THANK YOU VERY MUCH,
DR. MOLLICA, FOR ALL YOU DO FOR
US SURVIVORS.
I THINK ONE OF THE PRIMARY
ISSUES IS THAT TRANSITION FROM
CANCER CARE INTO PRIMARY CARE.
AND A LOT OF US DON'T HAVE A
HEALTH SYSTEM PRIMARY CARE TYPE
OF A DOCTOR.
ONE OF THE THINGS I LIKED ABOUT
THE OLD SURVIVORSHIP CARE PLANS,
I LOOKED AT IT AS A PASSPORT.
SO WHENEVER YOU GO TO A NEW
DOCTOR, YOU HAVE THAT
INFORMATION WITH YOU, YOU COULD
GIVE TO THEM.
FOR EXAMPLE, MY PRIMARY CARE
PHYSICIAN IS FINALLY GOING TO
RETIRE.
I'VE GOT TO GET A NEW ONE.
THE ONE I HAVE KNOWS WHAT I WENT
THROUGH, THE NEW ONE IS NOT
GOING TO KNOW THAT.
SO I THINK SURVIVORSHIP CARE
PLANS WERE IMPORTANT AND USEFUL
FOR SURVIVORS, EVEN THOUGH I
UNDERSTAND OVERALL SURVIVAL WAS
NOT AFFECTED BY THAT, IT WAS NOT
IMPROVED BY THAT, BUT I THINK
IT'S A QUALITY OF LIFE MEASURE,
SURVIVORSHIP CARE PLANS ARE
IMPORTANT.
BUT THAT TRANSITION IS
DIFFICULT, AND WE NEED TO COME
UP WITH SOME SORT OF A WAY
WHETHER WE'RE URBAN, RURAL, NO
MATTER WHERE WE LIVE, WE CAN
MAKE THAT TRANSITION.
AND KEEP INFORMING PEOPLE WHAT
WE'VE HAD, WHAT THE SIDE EFFECTS
MIGHT BE FOR PEOPLE THAT DON'T
DEAL WITH THIS.
>> ABSOLUTELY.
THANK YOU FOR THAT POINT.
IT IS SO IMPORTANT.
TRANSITION IS ACTUALLY BUILT IN
AS ONE OF THE INDICATORS IN THAT
HEALTH SYSTEM PROCESS OR POLICY
THAN THE STANDARDS, SO
DEFINITELY IMPORTANT.
I WILL ALSO SAY THAT WE
RECOGNIZE THE ISSUES IN PRIMARY
CARE.
WE HAD A RECENT REQUEST FOR
APPLICATIONS FOCUSED ON SYSTEM
LEVEL INTERVENTIONS, SO IT'S
NOT -- THE ONUS IS NOT ON YOU AS
A SURVIVOR TO TAKE THAT
INFORMATION TO YOUR PRIMARY CARE
PROVIDER AND EDUCATE THEM, BUT
RATHER THAT THEY ARE EDUCATED AS
A SYSTEM.
BUT WE HAVE A LOT OF WORK TO DO.
SO I COMPLETELY AGREE WITH YOU
AND IT'S SOMETHING WE TALK ABOUT
REGULARLY.
>> AND HOW DO WE COPE IN THE
MEANTIME, EVERY DAY, WITH WHAT
WE'VE BEEN THROUGH.
OVER TIME THINGS WILL IMPROVE,
BUT DO YOU HAVE RECOMMENDATIONS
OR MAYBE COME UP WITH SOME
INTERMEDIATE GOAL, SHORT TERM
GOALS THAT WILL HELP US OUT
STARTING TOMORROW?
>> IT'S A GREAT QUESTION, AND
IT'S SOMETHING THAT WE TALK
ABOUT BUT YOU THINK WE CAN DO
MORE WORK TO HELP.
THANK YOU.
>> KRISTEN, YOU HAD A QUESTION?
>> YEAH, HI.
I'LL ALSO ADD THAT I HAD A
BEAUTIFUL SURVIVORSHIP CARE PLAN
AND I HAD THE MOST THOROUGH
PHYSICAL AFTER SURGERY, AND IT
WAS WONDERFUL AND I WAS REALLY
EXCITED BECAUSE I WAS ALL JAZZED
ABOUT SURVIVORSHIP BUT NO ONE
EVER LOOKED AT THE DOCUMENT
INCLUDING MYSELF, IT'S A PAPER
DOCUMENT, IT'S SOMEWHERE
UPSTAIRS, IT'S BEEN ON ME TO DO
FOLLOW-UP SCREENINGS AND ALL
THAT.
I HAVE A WONDERFUL PRIMARY CARE
DOCTOR WHO'S AMAZING AND I GO TO
HER FOR EVERYTHING AND I'M LUCKY
TO HAVE THAT BUT SHE NEVER EVEN
SAW THE DOCUMENT.
SO I'M EXCITED THAT THINGS ARE
CONTINUING TO MOVE FORWARD, SO
PEOPLE CAN -- THE BURDEN IS ON
THEM TO FOLLOW THROUGH ON
SURVIVORSHIP ISSUES.
BUT MY QUESTION IS, WHICH I PUT
IN THE CHAT, IS THE VA DOING
ANY -- DO THEY HAVE ANY
INCENTIVES, I KNOW YOU HAVE THE
REIMBURSEMENT RESOURCES COMING,
BUT I PERSONALLY FEEL LIKE IF
YOU PAY PEOPLE TO DO THINGS OR
IF THERE ARE INCENTIVES OTHER
PENALTIES, THAT'S REALLY HOW YOU
CREATE CHANGE, SO JUGS WONDER IF
THAT'S PART OF THE MODEL NOW
OR --
>> SO THAT'S ALWAYS THE GOAL.
WE DON'T -- WE OURSELVES AT NCI
DON'T INFLUENCE THINGS LIKE
PAYMENT OR REIMBURSEMENT SO I
WANT TO JUST PUT THAT OUT THERE.
I WILL JUST SAY THAT THE VA IS
STARTING WITH A WHAT THEY CALL A
MINIMALLY VIABLE PRODUCT WHICH
MEANS THEY'RE STARTING SMALL AND
THEY'RE HOPING TO BE ABLE TO
ROLL IT OUT BUT BECAUSE IT'S A
COMPREHENSIVE SYSTEM WITH
PRIMARY CARE, I DO THINK THAT
THERE WILL BE BETTER INCENTIVES
AND TRANSITIONS IN CARE TO BE
ABLE TO DO THAT, SO THAT IS
SOMETHING THAT THEY'RE LOOKING
INTO.
>> YES, HI, EVERYONE.
AGAIN, LIKE KRISTEN I'M EXCITED
TO SEE THIS.
I DID NOT HAVE A CANCER CARE
PLAN.
I DON'T KNOW IF IT WAS BECAUSE I
WAS GOING INTO SURVIVORSHIP IN
2007 OR NOT, BUT I ALSO WORK
WITH SHELLEY DOING CANCER CARE
PLAN BACK IN 2016, SO IT'S
REALLY EXCITING TO SEE THIS
MOVEMENT, ESPECIALLY ALONG THE
POTENTIAL TO HAVE REIMBURSEMENT
BECAUSE I KNOW THAT WAS A MAJOR
ISSUE.
THIS IS KIND OF PIGGY BACKING
OFF OF THE OTHER QUESTION BUT I
ALSO USED TO WORK FOR THE
SOCIETY OF IMMUNOTHERAPY IN
CANCER AND WE PARTNERED WITH
ICCC, JUST MANAGING CARE IN THE
COMMUNITY SETTING WAS BEING ABLE
TO UNDERSTAND AND RECOGNIZE
ADVERSE EVENTS WHEN THEY WERE
COMING UP, SO I KNOW THERE IS A
TOOLKIT BUT I'M WONDERING IF
THERE IS KIND OF A PROACTIVE
EDUCATION AND ENGAGEMENT
STRATEGY FOR COMMUNITY
PRACTITIONERS SO THAT THEY WILL
BE MOTIVATED AND FEEL
COMFORTABLE WORKING ON THESE
CARE PLANS GOING OUT AND
SPECIFICALLY AND SOMEWHAT
SELFISHLY IF THERE IS ANYTHING
RELATED TO IMMUNOONCOLOGY
BECAUSE AGAIN I WAS ON A
CLINICAL TRIAL IN 2007, I WAS
TREATED AT A MAJOR NCI
DESIGNATED CENTER, AND I GO BACK
JUST BECAUSE I'M VERY CLOSE WITH
MY TEAM, BUT THE GUIDANCE IS,
YOU KNOW, YOU MADE IT, JUST GO
LIVE YOUR LIFE.
THAT DOESN'T MAKE ME FEEL COME
FORTDABLE TO SAY COME BACK IF
THERE'S A PROBLEM.
I PRESENTED AT STAGE THREE
MELANOMA.
YOU DON'T KNOW WHEN THERE'S A
PROBLEM AND SOMETIMES BY THE
TIME YOU KNOW, IT'S TOO LATE, SO
JUST WONDERING WHAT IF ANY, AND
IF IT'S POSSIBLE TO HAVE SOME
KIND OF GUIDANCE, TO HELP FOLKS
WHO MIGHT BE ON THE VERGE OF
RECURRING COMING IN EARLIER.
>> YOU ASK AMAZING QUESTIONS.
I'LL ANSWER THE FIRST QUESTION
ABOUT COMMUNITY RESOURCES.
SO WE DESIGNED THESE
SPECIFICALLY TO NOT BE ONLY
APPLICABLE FOR CANCER CENTERS OR
LARGE ACADEMIC MEDICAL CENTERS.
WE REALLY WANTED HEALTH CYST EMS
TO BE ABLE TO TAILOR THIS TO THE
RESOURCES THEY HAVE SO THEY
COULD EASILY IMPLEMENT.
SO WE'RE WORKING ON SOME
COMMUNITY RESOURCES AND ACCC IS
DEFINITELY A GROUP THAT WE'LL
ENGAGE WITH ALONG THE WAY, SO I
THINK THAT THAT'S A GREAT
SUGGESTION.
THEN YOU ASKED ABOUT
IMMUNOTHERAPY.
SO I WOULD JUST SAY THAT WE
TALKED A LOT ABOUT WHAT
POPULATIONS THIS WILL SERVE, AND
I THINK THAT THERE IS A NEED FOR
SURVIVORSHIP CARE IN SOME OF THE
NEWER TARGETED THERAPIES AND
BIOTHERAPIES, SO WE HAVE A LOT
OF WORK TO DO, BUT THESE
STANDARDS WOULD APPLY TO THOSE
PATIENTS AS WELL.
SO I THINK WE HAVE SOME WORK TO
DO.
>> THANK YOU.
>> BOB, YOU'RE NEXT.
>> SURE.
I'VE BEEN A SURVIVOR LONG ENOUGH
THAT I'VE SEEN THE INTEREST IN
SURVIVORSHIP PLANS KIND OF WAX
AND WANE THROUGH THE YEARS, AND
I'VE SEEN IT SOMETIMES SYSTEMS
AND HOSPITALS GIVE LIP SERVICE
TO IT AND THEY SAY WE DO IT, BUT
WHAT CAN WE AS ADVOCATES DO IN
OUR OWN COMMUNITIES TO REALLY
MAKE SURE IT'S REALLY EMBEDDED
AS PART OF THE TREATMENT
CULTURE, THAT THIS IS REALLY
IMPORTANT TO US?
>> ABSOLUTELY.
AND I BELIEVE YOU HAVE A CANCER
SURVIVOR STORY ON OUR WEBSITE AS
WELL, SO THANK YOU FOR DOING
THAT.
>> YES, I DO.
>> SO I WILL JUST SAY, YOU'VE
ALL BROUGHT UP SURVIVORSHIP CARE
PLANS, AND I DON'T THINK THAT
IT'S NOT THAT IT'S EFFECTIVE,
BUT I THINK KRISTEN SAID THIS,
OFTEN PROVIDERS FOCUS ONLY ON
SORT OF THE PIECE OF PAPER AND
HERE YOU GO AND NOT ON THE
PROCESS OF CARE AND SO I THINK
THAT PROVIDERS AND SURVIVORS CAN
FOCUS ON THAT DISCUSSION.
WHAT SHOULD I DO, WHAT SHOULD I
EXPECT OF MY PROVIDERS, WHAT
SHOULD I EXPECT OF MY HEALTH
SYSTEMS.
SO EDUCATING YOUR FELLOW
SURVIVORS ABOUT WHAT TO ASK FOR
IN TERMS OF CONTINUING CARE AND
SURVIVORSHIP CARE INSTEAD OF
JUST FOCUSING ON DO I HAVE A
PIECE OF PAPER OR NOT REALLY
MORE ABOUT THE PROCESS OF CARE
AND COMMUNICATION AND DISCUSSION
WITH YOUR DIFFERENT PROVIDERS,
AND THAT'S ON THE RESPONSIBILITY
OF THE HEALTHCARE SYSTEM AND
PROVIDER, AND IT ALSO DOES OFTEN
FALL ON THE SURVIVOR
UNFORTUNATELY, BUT WE NEED TO BE
BETTER PREPARED TO BE ABLE TO DO
THAT.
>> THANK YOU.
>> WE HAVE TIME FOR ONE MORE.
MARTY, IF YOU CAN GO AHEAD AND
ASK YOUR QUESTION.
>> SURE.
THANK YOU.
I'LL TRY TO BE QUICK.
SO THIS IS SO IMPORTANT, WHAT
YOU'RE DOING.
AND I HEAR FROM TOO MANY PEOPLE
IN MY SUPPORT GROUPS THAT WHEN
THEY'RE TREATED FOR THEIR
CANCER, THEY'RE THEN KIND OF LET
OUT THE DOOR.
WELL, WE'VE TAKEN CARE OF YOUR
CANCER, YOU'RE ON YOUR OWN NOW.
HAVING THIS COMPREHENSIVE
FRAMEWORK FOR FOLLOW-UP IS
REALLY, REALLY SIGNIFICANT.
IT SEEMS TO PUT THE PRIMARY
RESPONSIBILITY ON THE HEALTHCARE
SYSTEM FOR SURVIVORSHIP CARE AND
YET AS NOTED BY SOME OF THE
PARTICIPANTS, IT GOES BEYOND
TRADITIONAL HEALTHCARE.
SO YOU HAVE ISSUES AROUND DIET,
YOU HAVE ISSUES AROUND -- AND
THE NEED FOR EX-A EXERCISE, YOUE
FINANCIAL TOXICITY, YOU HAVE
WORKPLACE ACCOMMODATION ISSUES,
ET CETERA, ET CETERA.
SO MY QUESTION IS, WHAT ARE YOU
FINDING IN TERMS OF BARRIERS, IN
TERMS OF REACHING OUT TO THESE
EXTERNAL NOT HEALTHCARE
ORGANIZATIONS TO GET THEM TO
PARTICIPATE IN THE SURVIVORSHIP
APPROACH AND WHAT ARE YOU DOING
TO OVERCOME THOSE?
WHAT WORKS IN TERMS OF THAT
OUTREACH?
>> THAT'S A GREAT QUESTION.
THANK YOU SO MUCH.
SO WE ARE IN THE VERY EARLY
STAGES OF PILOT TESTING THESE
STANDARDS, SO I THINK THOSE
QUESTIONS ARE TO COME, BUT THERE
ARE MANY NON-PROFIT
ORGANIZATIONS THAT ARE OFFERING
THAT TYPE OF SUPPORTIVE CARE IN
DIFFERENT AREAS.
AND I THINK WE NEED TO BETTER
ROUTE OUR SURVIVORS TO THAT
THROUGH OUR HEALTH SYSTEMS.
SO I THINK PLEASE STAY TUNED
BECAUSE OUR HOPE IS TO BE ABLE
TO BRIDGE THAT GAP.
>> THANK YOU SO MUCH.
>> THANKS, AND JUST IF I COULD
ADD REALLY QUICKLY, I'M
PRIVILEGED ENOUGH TO BE IN
SURVIVORSHIP FSURVIVORSHIP FOR M
AND I JUST LOVE THE FOCUS ON
LIVING INSTEAD OF THE CANCER,
BUT I DO HAVE MY SURVIVORSHIP
PLANS THAT I TAKE TO MY PRIMARY
CARE WHICH HAVE CHANGED QUITE A
BIT, BUT I DO WANT TO NOTE IF
THERE'S MISSING INFORMATION,
THEY'RE NOT GOING TO HAVE, AND I
HAD TO GET TSH O -- ONE OF MY
PROVIDERS DIDN'T BRIEF BELIEVE I
DIDN'T HAVE A GALLBLADDER, AND
AT THE TIME I DIDN'T THINK THAT,
WELL, LET ME JUST GO GET MY
SURGICAL REPORT INSTEAD OF
HAVING TO JUST HAVE THE EXPENSE
OF ANOTHER ULTRASOUND.
BUT IT'S REALLY -- SOME PEOPLE
DON'T EVEN KNOW WHAT THEY'D HAD
OR WHAT IS COMING UP.
SO THE PLAN FOR WHEN THE SYSTEM
ISN'T READY FOR US, IT'S JUST
STILL AN IMPORTANT PIECE OF
MOVING ON TO THE NEXT PHASE.
BUT AMY, WE HAD A COUPLE MORE
QUESTIONS COMING THROUGH.
HOW DO YOU WANT TO HANDLE THAT?
>> I'M LOOKING IN THE CHAT NOW
TOO.
WHY DON'T WE JUST KEEP DOING
THAT AND YOU CAN KEEP MOVING ON,
ANNIE.
>> I KNOW DR. RATHMELL JOINED US
A LITTLE BIT EARLY BUT WE STILL
HAVE TIME FOR THE DISCUSSION, I
DON'T WANT TO CUT IT OFF WHEN
PEOPLE HAVE THINGS TO SAY, BUT
LEE, YOU HAD YOUR HAND UP
EARLIER.
WE'LL DO LEE AND THEN WE'LL DO
BRITTANY.
>> WE DID LEE IN THE CHAT.
HE WAS MENTIONING --
>> THAT'S TAKEN CARE OF?
OKAY.
>> THAT'S FINE.
>> AND THEN BRITTANY, DID YOU
WANT TO GO AHEAD AND ASK YOUR
QUESTION?
>> OH, SURE.
I JUST HAD A CLARIFICATION
QUESTION MAYBE, YOU KNOW, I
HEARD THE FOCUS ON THE VA PILOT,
WHICH IS GREAT, BUT MY COMMENT
IN THE CHAT AND QUESTION IF YOU
COULD SHARE A LITTLE BIT MORE
ABOUT INTENTIONS TO PILOT MORE
BROADLY, WE RECOGNIZE THE VA
POPULATION AS NOT NECESSARILY
REFLECTIVE OF THE GENERAL
POPULATION, IT TENDS TO BE
OLDER, IT'S NOT QUITE AS
RACIALLY AND ETHNICALLY DIVERSE,
ET CETERA, SO JUST CONCERNS
WITH, YOU KNOW, TAKING LEARNINGS
FROM THE PILOT THAT MAY NOT BE
GENERALIZABLE TO THE LARGER
PATIENT POPULATION AND HOW YOU
ALL ARE KIND OF APPROACHING
FOCUSING ON OTHER PILOTS AND
OTHER SITES.
>> THANKS VERY MUCH, BRITTANY.
SO I'LL ANSWER THAT VERY QUICKLY
ONLY TO SAY THAT THE VA WAS SORT
OF A NATURAL PARTNER IN THE
GOVERNMENT -- ALL OF GOVERNMENT
APPROACH WITH THE CANCER CABINET
SO IT'S JUST ONE SITE.
THE GRANT SUPPLEMENT NOTICE THAT
WE RECENTLY FIELDED, WE GOT A
GREAT RESPONSE FROM AND THAT
INCLUDED CANCER CENTERS, THAT
INCLUDED COMMUNITY SITES, SO
WE'RE REALLY EXCITED TO BE ABLE
TO FUND SUPPLEMENTS OR GRANT
FUNDING TO BE ABLE TO ASSESS
ALIGNMENT AND IDENTIFY GAPS.
SO OUR GOAL IS NOT TO FOCUS ONLY
ON THE VA SYSTEM, SO THAT'S AN
EXCELLENT POINT.
>> DO WE HAVE ANY OTHER
QUESTIONS FOR DR. MOLLICA?
OKAY.
HEARING NONE, THANK YOU SO MUCH
FOR SPENDING TIME WITH US AND
SHARING YOUR EXCITING WORK.
AS YOU COULD HEAR, WE'RE VERY,
VERY ENTHUSIASTIC AND INTERESTED
ABOUT WHAT IS GOING TO BE
HAPPENING IN THAT AREA.
SO THANK YOU VERY MUCH.
OKAY.
NOW FOR THE MAIN EVENT, I WOULD
LIKE TO JUST THANK DR. RATHMELL
FOR TAKING TIME OUT OF HER BUSY
DAY TO GIVE US AN UPDATE, AND
THANK YOU AGAIN FOR BEING WITH
US.
>> THANK YOU.
I'M GLAD TO BE HERE.
THANK YOU FOR ACCOMMODATING MY
LITTLE BIT CRAZY SCHEDULE TODAY.
IT'S KIND OF FUN TO BE AT THE
END, SO I HOPE THIS GOES REALLY
WELL.
I WANT TO JUST LET YOU KNOW
WHERE I WAS TODAY.
THE WHITE HOUSE DECIDED TO
CONVENE A GROUP TOGETHER TO TALK
ABOUT HOW WE TRANSFORM CLINICAL
TRIALS.
HOW DO WE BRING CLINICAL
RESEARCH INTO THE MAINSTREAM AND
HOW DO WE MAKE IT BE A PART OF
CARE , THAT CLINICAL RESEARCH IS
CARE, AND I THINK THIS IS
SOMETHING THAT WE WILL TALK
ABOUT MORE IN THIS GROUP BECAUSE
I THINK YOUR VOICES ARE REALLY
IMPORTANT IN THIS DISCUSSION.
IT WAS WELL REPRESENTED BY
ADVOCACY GROUPS, CANCER REALLY
DOMINATED THE ROOM BUT IT WAS
REPRESENTED TO ALL.
FUN FACT, IT RAN RIGHT UP UNTIL
I NEEDED TO COME TO THIS SO I
SAID I NEED A CONFERENCE ROOM
WHERE I COULD HAVE A MEETING SO
I THOUGHT I'D GET SOME DRAP
GOVERNMENT ROOM BUT THOSE MUST
BE ALL TAKEN BECAUSE THEY PUT ME
IN THIS HISTORIC SECRETARY OF
WAR ROOM.
SO -- ANYWAY, I JUST HAD TO
SHARE.
I'M IN A CRAZY FANCY LITTLE
HISTORIC ROOM.
SO LET'S GET STARTED.
SO TODAY, WHAT WE'LL TALK ABOUT
IS RECENT NEWS AND UPDATES AND
THEN MOVE INTO BUDGET.
YOU ALREADY HEARD FROM HOLLY A
LITTLE BIT ABOUT WHERE CONGRESS
IS LOOKING TOWARD IN OUR BUDGET
DISCUSSIONS.
SO HOT OFF THE PRESSES, AND THEN
REALLY WANT TO SPEND A MINUTE
LOOKING AT OUR RESEARCH AND
PROGRAM HIGHLIGHTS.
EVEN THOUGH IT FEELS LIKE NOT
THAT LONG AGO WHEN I MET WITH
YOU, I THINK IT WAS IN FEBRUARY,
SO MUCH HAS HAPPENED, AND I
THINK IT'S JUST VITALLY
IMPORTANT THAT IT'S APPARENT
THAT THE PROGRESS IS JUST
CONTINUING UNABATED.
AND THEN WE WILL HAVE SOME TIME
FOR ADDITIONAL QUESTIONS.
BEFORE I LAUNCH IN, I JUST WANT
TO SAY THIS IS SURVIVORSHIP
MONTH AND THE PRESENTATION RIGHT
BEFORE IS SO APT AND JUST TOP OF
MIND IS HOW WE MOVE FROM THE
SPACE OF WE'VE TAKEN CARE OF THE
CANCER, CONGRATULATIONS, TO THAT
IS ONE PART OF YOUR HEALTH
SYSTEM AND NOW SURVIVORSHIP
PLAYS A MAJOR ROLE GOING ONWARD.
AND I PARTICULARLY LIKE THE
COMMENT IN THE CHAT FROM LEE
THAT CINCINNATI WAS INCLUDING
PRIMARY CARE AS A CLOSE PART OF
THE CANCER CENTER.
SO ABSOLUTELY IMPORTANT.
OKAY.
NEXT SLIDE.
SO FIRST I HAVE TO THANK SEVERAL
OF YOU WHO ARE ENDING THE TERM
ON THE NCRA, SO EVERYONE ON THIS
SLIDE BECAME A MEMBER OF THE
NCRA IN 2020, AND SO JOINED JUST
IN TIME FOR THE PANDEMIC SO I'M
SURE I'VE HAD MORE THAN YOUR
SHARE OF THESE WEBEX VERSIONS OF
THE NCRA, BUT REALLY WANT TO
THANK EVERYONE SO I'LL JUST -- I
THINK EVERYONE IS ON TODAY, BUT
KRISTEN SANTIAGO, JACQUELINE
SMITH, KEVIN STEMBERGER, NICOLE
WILLMARTH AND YELAK BIRU, THANK
YOU VERY MUCH FOR THE TIME AND
COMMITMENT AND JUST KNOW THAT
EVEN WHEN YOU ROTATE OFF OF
BOARDS HERE WITH THE NCI, WE
TEND TO KEEP YOU A LITTLE BIT ON
SPEED-DIAL.
SO YOU'LL STILL BE PART OF THE
NCI FAMILY.
SO THANKS VERY MUCH.
OKAY.
SO MOVING ON TO THE NEXT NEWS
AND UPDATES.
SPEAKING OF BOARD MEMBERSHIP, I
WANT TO LET YOU KNOW ABOUT ONE
THING THAT WE'LL BE DOING COMING
UP FORWARD.
SO AS I JUST MENTIONED, WE HAVE
HAD SEVERAL PEOPLE ROTATING OFF.
THERE WILL BE NEW MEMBERS
JOINING, AND ONE ASPECT OF BOARD
MEMBERSHIP THAT I'VE HEARD FROM
SEVERAL OF THE BOARDS BUT ALSO
LEARN IN TALKING WITH ANNIE
ELLIS WAS THAT OUR ORIENTATION
IS FAIRLY NARROW AND SPECIFIC.
IT'S ENOUGH TO ALLOW YOU TO DO
THE WORK THAT WE'RE ASKING FOR
BUT IT'S NOT AS COMPREHENSIVE AS
IT COULD BE.
TO GIVE FOLKS A REALLY BROAD
PICTURE OF WHAT GOES ON AT THE
NCI AND WHERE THE WORK IS
HAPPENING AND WHAT IT IS THAT WE
ARE DOING OR ARE ABLE TO DO.
SO WE ARE IN THE PROCESS OF
PLANNING AND ORIENTATION FOR NCI
ADVISORY BOARD MEMBERS.
THERE ARE SIX BOARDS, SO THIS
BEING ONE OF THEM.
AND PLANNING TO CROSS FERTILIZE
IN THOSE BOARDS BY BRINGING THE
INCOMING BOARD MEMBERS TOGETHER
FOR AN IN-PERSON ORIENTATION.
SO MORE DETAILS TO COME, AND WE
MAY PING FOLKS TO FIND OUT WHAT
WOULD BE THE MOST RELEVANT
INFORMATION TO PUT INTO AN
IN-PERSON ORIENTATION.
VERY EXCITED TO DO THIS, BECAUSE
I THINK IT WILL HELP OUR BOARDS
REALLY BE MEATY.
SO I'D LIKE TO INTRODUCE THE
FACT THAT THE WORK HERE IS OF
THE HIGHEST CALIBER, JUST
POINTING TO SOME RECENT
INTRAMURAL ACCOMPLISHMENTS.
AS YOU KNOW, THE NCI CONSISTS OF
INVESTIGATORS AND SCIENTISTS AND
CLINICIANS WHO ARE IN MARYLAND
AND THAT'S SORT OF THE NCI
PROPERLY, AND THEN WE FUND
INVESTIGATORS ALL AROUND THE
COUNTRY AND THE SCALE OF THAT IS
REALLY MASSIVE.
IN OUR MAIN CAMPUS, WE HAVE
OUTSTANDING INVESTIGATORS AND
JUST TO PUT SOME FACES TO WHO
THESE FOLKS ARE AND WHY THEIR
NAMES BECOME HOUSEHOLD NAMES.
SO ELECTED TO THE NATIONAL
ACADEMY OF SCIENCES.
THIS IS ONE OF THE HIGHEST
HONORS THAT A SCIENTIST CAN
ACHIEVE.
WE HAD THREE ELECTED MEMBERS
THIS YEAR.
STEVE ROSENBERG, GIORGIO
TRINCHIERI AND DESCRAN WOLIN.
THE AMERICAN SOCIETY FOR
CLINICAL INVESTIGATION IS AN
ORGANIZATION FOR PHYSICIAN
SCIENTISTS THAT RECOGNIZES THOSE
WHO ARE MAKING REMARKABLE
CONTRIBUTIONS AT EARLY STAGES IN
THEIR CAREERS.
THESE HAVE TO BE ELECTED BEFORE
THEY'RE 50, SO JUNG-MIN LEE AND
DOUG STEWART WERE BOTH ELECTED.
THEN THE ASSOCIATION OF AMERICAN
PHYSICIANS IS ANOTHER FOR
PHYSICIAN SCIENTISTS, ANOTHER
VERY PRESTIGIOUS MARK OF A
CAREER THAT HAS IMPACTED HUMAN
HEALTH, AND ELAINE JAFFE AND
YVES POMMIER WERE BOTH ELECTED
THIS YEAR.
SO AMONG OTHER THINGS THAT I
LOOK AT NOW SIX MONTHS IN THIS
ROLE AND CAN SEE SOME OF THE
SCOPE AND SCALE OF THE NCI WAS
SINCE I SAW YOU LAST WAS THE
AACR AND ASCO MEETINGS, TWO OF
THE MAJOR PROFESSIONAL SOCIETIES
FOR CANCER.
OF COURSE THERE ARE MANY OTHERS,
BUT THESE ARE TWO OF THE LARGEST
AMERICAN SOCIETIES.
THE FOOT PRINT OF NCI-FUNDED
INVESTIGATORS AND NCI PERSONNEL
WAS VERY, VERY NOTABLE.
WE HAD WINNERS OF SOME OF THE
MAJOR AWARDS.
FOR EXAMPLE, STEVE ROSENBERG
AGAIN WON THE LIFETIME
ACHIEVEMENT AWARD FOR CANCER
RESEARCH.
HIS NAME IS PROBABLY WELL-KNOWN
TO UP THAT HE'S PIONEERED SOME
OF THIS WORK THAT'S NOW LED TO
THE CAR-T-CELL IMMUNOTHERAPY FOR
STEM CELLS THAT REALLY HAS
TRANSFORMED THE WAY WE THINK
ABOUT CANCER.
AND ASCO GIVES AWAY A
HUMANITARIAN AWARD.
THIS IS AN AWARD THAT'S REALLY
RECOGNIZED AS SOMEONE WHO HAS
GONE ABOVE AND BEYOND TO ADVANCE
THE CARE OF PATIENTS WITH
CANCER.
IT DOESN'T HAVE TO BE IN THE
GLOBAL COMMUNITY BUT THEY
HAPPENED TO CHOOSE OUR DIRECTOR
OF NCI CENTER FOR GLOBAL HEALTH,
DR. SATISH GO PAL, WHO HAS
REALLY COMMITTED HIS LIFE TO
IMPROVING THE STATE OF CANCER.
SO IN MY PRESENTATIONS AT AACR
AND ASCO, I GOT TO MEET AND TALK
TO LOTS OF FOLKS, I THOUGHT I
WOULD JUST SHARE SO THAT YOU
KNOW WHAT WAS IN MY HEAD AT THE
TIME THAT I WAS TALKING TO THEM.
THE AACR, THE MAJOR THEME OF
THAT CONVERSATION WAS TO TALK
ABOUT A SHIFT IN THINKING.
I'M FROM NASHVILLE AS YOU ALL
KNOW, I'M A FAN OF TAYLOR SWIFT
AND WE USE THE TECHNOLOGY OF THE
ERAS, THE EVOLUTION OF CANCER
VIRGINIA BEACH AND THE EVOLUTION
OF SCIENTIFIC THINKING FROM TOP
DOWN SORT OF SILOED TYPE OF
THINKING TO MORE RECENTLY A VERY
MULTIDISCIPLINARY COLLABORATIVE,
RECOGNIZING THAT THERE'S VALUE
IN PARTNERSHIP, AND NOW TO WHAT
WE ARE CALLING A 360, WHICH IS
ENGAGING EVERY VOICE.
I TALKED TO YOU BEFORE ABOUT THE
NATIONAL CANCER PLAN AND ONE OF
THE PIVOTAL GOALS BEING ENGAGING
EVERY PERSON, AND IT COMES
BECAUSE OF SOCIAL MEDIA, IT
COMES BECAUSE OF CHANGES IN THE
WAY WE THINK ABOUT DATA, AI, AND
TOOLS THAT ALLOW US TO THINK
MORE BROADLY THAN EVER BEFORE,
BECAUSE OUR SOCIETY IS MOVING
TOWARD INCLUDING VOICES THAT HAD
NOT PREVIOUSLY BEEN ENGAGED, AND
I'M TRULY EXCITED ABOUT WHAT
THAT CAN MEAN FOR CANCER CARE.
SO ESPECIALLY TO THIS BOARD,
EVERYONE'S VOICE IS IMPORTANT IN
MAKING DECISIONS AND SETTING
PRIORITIES AROUND THE CANCER
ARENA.
AND AT ASCO, THE FOCUS THERE IS
A LITTLE BIT MORE TOWARD
CLINICAL RESEARCH AND SO WE
REALLY EMPHASIZED THAT INHERENT
NEED TO MOVE CLINICAL RESEARCH
FORWARD FASTER.
AND THE IDEA THERE IS THAT WE
CANNOT AFFORD THE TIME THAT IT
MIGHT TAKE FOR A CLINICAL
RESEARCH IDEA TO TAKE LITERALLY
YEARS BEFORE IT BECOMES A
PROTOCOL YEARS MORE TO ACCRUE TO
PATIENTS, YEARS MORE TO BE
REVIEWED.
SO THAT THAT'S TIME THAT'S NOT
ACCEPTABLE.
SOME PIECES OF IT JUST DO TAKE
TIME, BUT THERE ARE PIECES THAT
WE CAN ACCELERATE.
THERE ARE DIFFERENT WAYS THAT WE
CAN GET CLINICAL RESEARCH INTO
THE HANDS OF PATIENTS WHO ARE
DESIROUS OF IT.
THAT WAS A GOOD SETUP FOR THE
EVENTS TODAY WHERE WE WERE
REALLY TALKING ABOUT HOW DO WE
MOVE FROM CLINICAL RESEARCH IS
SOMETHING THAT YOU HOLD OUT TO
UNTIL THE LAST MINUTE, BUT
CLINICAL RESEARCH IS HOW WE CARE
FOR PATIENTS.
IT IS A PART OF THE STANDARD OF
CARE, BECAUSE WE ARE NOT DONE,
AND WE ARE STILL LEARNING, AND
WE CAN ENGAGE OUR PUBLIC MORE IF
WE'RE MOVING MORE TO CLINICAL
TRIAL SPACE THAT IS A PART OF
EVERYDAY LIFE.
SO A COUPLE OF OTHER THINGS THAT
ARE COMING SOON.
THIS ONE PARTICULARLY RELEVANT
TO THE NCRA IS A SORT OF A
REORGANIZATION OF BRINGING THREE
OF OUR OFFICES TOGETHER INTO A
CENTER FOR EXTERNAL AFFAIRS.
SO ONE OF THOSE OFFICES IS THE
OFFICE OF ADVOCACY RELATIONS.
YOU ALL KNOW AMY WILLIAMS, SHE
IS OUR ESTEEMED LEADER OF THE
OFFICE OF ADVOCACY RELATIONS,
BUT WE HAVE TWO OTHER OFFICES
THAT YOU KNOW, BUT MAY NOT KNOW
AS WELL.
THE OFFICE OF GOVERNMENT AND
CONGRESSIONAL RELATIONS, THAT'S
MK HALL HOLOHAN AND HOLLY GIBBO
YOU HEARD FROM TODAY WHO FOCUS
ON OUR RELATIONSHIP WITH
OBVIOUSLY GOVERNMENT AND
CONGRESS, AND OUR OFFICE OF
COMMUNICATIONS AND PUBLIC
LIAISON.
SO THIS IS OUR COMMUNICATIONS
BRANCH.
SO ALL OF THESE GROUPS TOGETHER
CAN BE ELEVATED AND MADE MORE
POWERFUL BY BRINGING THEM
TOGETHER.
SO THE IDEA IS TO CREATE THEM
TOGETHER AS A CENTER.
THIS WILL, I THINK, EMPOWER EACH
TO BE ABLE TO BE MORE EFFECTIVE,
AND LOOKING FORWARD TO THIS
STRATEGIC REALIGNMENT TO BRING
COHESION SO THAT WE ARE BEING
ABLE TO LEAN DIRECTLY INTO
COMMUNICATIONS WHEN ADVOCACY
NEEDS THAT, AND THAT WE CAN
COMMUNICATE BETTER INTO WHERE
WE'RE WORKING IN GOVERNMENT AND
CONGRESSIONAL RELATIONS AS WELL.
BECAUSE THEY'RE ALL VERY
CONNECTED AND CAN WORK ACROSS
THESE BOUNDARIES VERY
EFFECTIVELY.
COUPLE OF OTHER BIG THINGS YOU
SHOULD KNOW ABOUT AS MEMBERS OF
THE NCAR BOARD.
SO WE HAVE A NEW LEADERSHIP
MEMBER, WELL, NOT QUITE YET,
IT'S STILL JUNE.
NOT UNTIL JUNE 30TH.
SO WARREN KIBBE WILL BE JOINING
US AS A NEW DEPUTY DIRECTOR FOR
DAY A SCIENCE.
HIS FOCUS WILL BE ON STRATEGIES
FOR A.I. INITIATIVES, WHICH OF
COURSE COME UP IN EVERY VENUE
AND EVERY TALK.
DATA HARMONIZATION, REALLY
ESSENTIAL THAT WE UTILIZE ALL OF
THE DATA TO THE MOST BENEFIT
THAT IT CAN BE POSSIBLE.
AGAIN, ANOTHER TENET OF THE
NATIONAL CANCER PLAN, WORKING ON
COMMON DATA ELEMENTS, USING A
COMMON LANGUAGE WHEN WE PUT DATA
TOGETHER SO THAT WE CAN MORE
EASILY MOVE DATA AND ANALYZE
DATA.
CODING ALGORITHMS, AND ALSO A
DIGITAL TRANSFORMATION OF
EVERYTHING ABOUT HOW WE WORK.
SO VERY EXCITED TO HAVE HIM COME
AND JOIN US AND HE'LL BE HERE
SOON, I'M SURE YOU WILL HEAR
FROM HIM IN THIS VENUE.
AND THEN ROUNDING OUT THE TEAM,
WE ALSO BROUGHT ON DR. SHAALAN
BEG, HE'S AN NCI SENIOR ADVISOR
FOR CLINICAL RESEARCH.
HE IS A CLINICAL INVESTIGATOR
AND IS CHARGED WITH, AGAIN, THE
THEME OF THE DAY WOULD BE HOW DO
WE ACCELERATE CLINICAL RESEARCH.
HOW DO WE DEMOCRATIZE CLINICAL
RESEARCH, HOW DO WE DISTRIBUTE
IT INTO COMMUNITIES, AND HOW DO
WE GET THE ANSWERS THAT WE NEED
IN A TIMELY WAY MOST
EFFICIENTLY.
SO HE HAS SOME UNIQUE EXPERIENCE
IN THIS REGARD, AND HAS REALLY
JOINED US SORT OF RUNNING OUT OF
THE GATE.
SO THE REFERENCE ON THE RIGHT IS
TO A CANCER CURRENTS BLOG THAT
WE WROTE TOGETHER TO HIGHLIGHT
WHERE THERE ARE EFFORTS THAT WE
CAN REALLY MAKE A BIG
DIFFERENCE.
AND THEN LEADERSHIP IS NOT IN
JUST NAMING DEPUTIES AND SENIOR
ADVISORS, ET CETERA.
IT'S IN REALLY SORT OF BUILDING
OUR LEADERSHIP AND OUR
LEADERSHIP CAPACITY AND OUR LEAD
ARE SHIP COMMUNICATION ACROSS
THE CONTINUUM.
THIS IS TAKING PLACE IN LOTS OF
DIFFERENT COMPONENTS OF THE NCI.
I JUST WANT TO POINT TODAY TO
TWO INITIATIVES THAT ARE VERY
FRESH AND RECENT ANNOUNCED SINCE
THE LAST TIME WE WERE TOGETHER,
IS THE CANCER EQUITY LEADERS.
YOU MAY HAVE SEEN SOME
ANNOUNCEMENT ABOUT THIS.
IT WAS ANNOUNCED AT AACR, AND
THERE'S BEEN QUITE A LOT OF NEWS
ABOUT IT, WHICH IS THESE
INDIVIDUALS ARE CANCER LEADERS,
LOTS OF THEM ARE CANCER CENTER
DIRECTORS.
ALL FROM MINORITY GROUPS, ALL
VERY COMMITTED TO PAVING THE WAY
FOR THE NEXT GENERATION.
REDUCING BARRIERS AND SILOS.
LOOKING FOR WAYS THAT WE CAN
PROVIDE THE BEST CARE TO EVERY
PATIENT AND REALLY COMMITTED TO
SERVING AS ROLE MODELS.
SO THIS GROUP WILL BE AN
IMPORTANT GROUP THAT WE'LL LEAN
ON AS WE MOVE FORWARD.
SEPARATELY, WE HAD OUR FIRST
BLACK IN CANCER CONFERENCE LAST
FRIDAY ON CAMPUS.
THIS IS A REALLY EXCITING
GRASSROOTS EFFORT THAT STARTED
FROM SOME POSTDOCTORAL FELLOWS
WHO RECOGNIZED THAT THEY JUST
DIDN'T HAVE ACCESS TO A
COMMUNITY.
IT STARTED AS A SOCIAL MEDIA
TYPE OF ACTIVITY, A HASHTAG,
BLACKINCANCER, AND MOVED ON TO
BECOME A MOVEMENT, AND BROUGHT
AN AMAZING ARRAY OF SPEAKERS
TOGETHER AND THE FIRST OF REALLY
BUILDING A COMMUNITY IN THE
CANCER ARENA.
I WAS VERY HONORED TO HAVE THE
OPPORTUNITY TO TALK TO THIS
GROUP, AND WITH THEIR THEME,
LIFTING AS WE CLIMB, S SO REALLY
TRYING TO BUILD LEADERS IN ALL
VENUES.
AND IT'S ALSO ABOUT HOW WE
COMMUNICATE, SO THERE'S A NAME
CHANGE THAT'S COMING SOON TO OUR
CENTER TO REDUCE CANCER HEALTH
DISPARITIES, FORMERLY KNOWN AS
CRCHD.
THE WORK OF THAT CENTER WON'T
CHANGE, BUT THE NAME WILL.
AND SO WE'RE ALREADY STARTING TO
CALL IT THE CENTER FOR CANCER
HEALTH EQUITY, AND I THINK IF
YOU LOOK AT THE NAMES FOR JUST A
MINUTE, YOU CAN SEE THE POWER
AND THE DIFFERENCE FROM A TITLE
THAT IS GENERALLY NEGATIVE AND
JUST SUGGESTS TO REDUCE BUT NOT
FULLY ADDRESS TO ONE THAT IS
VERY POSITIVE.
AND HELPS US FOCUS ON THE HEALTH
EQUITY THAT WE ALL VERY MUCH
WANT TO ACHIEVE, SO I HAVE TO
GIVE BIG KUDOS TO SONYA
SPRINGFIELD AND HER TEAM TO TAKE
ON THE INITIATIVE TO SAY WE
SHOULD USE A NAME THAT IS
MEANINGFUL.
SO THANK YOU FOR THAT, AND THAT
WILL BE COMING SOON.
BUDGET.
SO YOU CAN GO RIGHT ON IN TO THE
BUDGET.
SO YOU ALREADY HEARD SOME OF
THIS SO I'LL GO THROUGH FAIRLY
QUICKLY BUT HAPPY TO TAKE
QUESTIONS ABOUT IT.
YOU CAN SEE HERE WHERE WE ARE
WITH OUR BUDGET.
LAST YEAR'S BUDGET, THERE ON THE
FAR RIGHT COLUMN, WAS
$7.3 BILLION IN TOTAL.
THAT INCLUDED CARES ACT FUNDING.
IN 2024, IT WAS 7.22.
SO WE DID HAVE AN INCREASE IN
OUR BASE, BUT THAT WAS OFFSET BY
A DECREASE IN MOONSHOT MONEY
THAT WAS COMING IN, SO ACTUALLY
IT WAS OUR FIRST DECREASE THAT
WE HAD SEEN IN MANY YEARS.
WE DON'T KNOW WHAT WILL COME
LATER, BUT YOU HEARD FROM HOLLY
GIBBONS WHAT THE FIRST PASS IS
STARTING TO COME IN AT.
THE COLUMN ON THE LEFT OR IN THE
MIDDLE, I GUESS, IS OUR
PROFESSIONAL JUDGMENT BUDGET.
SO ALTHOUGH $7 BILLION IS A LOT
OF MONEY, I IT HAS NOT BEEN A
NUMBER THAT'S BEEN KEEPING UP
WITH EITHER INFLATION OR THE
CAPACITY THAT'S NECESSARY TO BE
ABLE TO DO THE KIND OF WORK THAT
WE ARE EXPECTING IS NEEDED.
SO WHEN WE PUT TOGETHER A
PROFESSIONAL JUDGMENT BUDGET, WE
MAKE AN ESTIMATE WHAT WOULD THIS
ACTUALLY COST.
SO IN 2023 WE WERE OFF BUT
CLOSE, OUR PROFESSIONAL JUDGMENT
WAS $7.7 BILLION, AND YOU CAN
SEE, IT'S ONLY INCREASED.
AND SO WE ARE WIDENING OUR GAP
OF WHAT WE CAN AND CAN'T DO, AND
IN TERMS OF OUR BUDGET.
SO IT IS IMPORTANT TO KNOW HOW
TIGHT IT IS BECOMING WITH A
BUDGET THAT'S STAYING
ESSENTIALLY FLAT.
SO I ALSO WANT TO MAKE SURE YOU
KNOW WHERE WE ENDED UP WITH OUR
PAYLINES.
SO FIRST JUST BY WAY OF
DEFINITION, THE PAYLINE IS THE
LEVEL AT WHICH WE PAY GRANTS
WITHOUT QUESTION.
OUR FINAL FUNDING RATE IS ALWAYS
A LITTLE BIT HIGHER BECAUSE
THERE ARE SPECIAL PROGRAMS THAT
BRING SOME OTHER GRANTS IN AND
THERE ARE A FEW OTHER
MECHANISMS.
SO IT WILL BE A SMIDGEON HIGHER
THAN THIS NUMBER.
THIS IS THE NO QUESTIONS ASKED,
YOUR GRANT GOT THIS SCORE, THIS
IS WHAT WE'LL -- WHERE WE'RE
PAY.
SO WHETHER WE DIDN'T HAVE OUR WR
BUDGET WHEN WE TALKED LAST, WE
WERE HOLDING AN INTERIM PAYLINE
WHERE WE WERE ESTIMATING THAT
WE'D BE ABLE TO GET AWAY WITH AT
LEAST 9% AS OUR PAYLINE AND WE
WERE HOLDING 14% FOR AN EARLY
STAGE INVESTIGATOR, SO AN
INVESTIGATOR WITHIN THE FIRST 10
YEARS OUT OF THEIR PH.D., A AND%
FOR R21 GRANTS.
NOW KNOWING OUR BUDGET, WE WERE
ABLE TO MAKE IT MOVE TO 10, SO
WE NOW ARE PAYING AT THE TENTH
PERCENTILE FOR R01s.
WE DID DO ONE THING WHICH WAS TO
REALLY PUSH THE FUNDING FOR THE
EARLY STAGE INVESTIGATOR AND
MOVED IT UP TO 17%.
SO THERE'S BASICALLY A
7 PERCENTILE POINT HANDICAP FOR
AN EARLY STAGE INVESTIGATOR.
SO MY REFERENCE THERE TO THE
BOTTOM LINE BLOG, YOU CAN READ
SOME OF THE THOUGHTS THAT WENT
INTO THAT DECISION-MAKING.
THIS TELLS THE STORY A LITTLE
BIT MORE CLEARLY.
FIRST THE DARKER LINE ON THE
BOTTOM IS THE FUNDING -- THE
PAYLINE FOR R01s FOR
ESTABLISHED INVESTIGATORS.
AND YOU CAN SEE IT HOVERED
AROUND 10.
WE WERE REALLY MAKING SOME
STRONG GAINS.
THIS WAS INITIATED UNDER
DR. SHARPLESS, YOU PROBABLY
HEARD FROM HIM, REALLY PUSHING
TO TRYING TO GET THAT PAYLINE TO
A NUMBER THAT'S MORE LIKE 15,
WHICH IS -- AND WE'VE GOTTEN UP
TO 12, SO WE ARE BACK AT 10, AND
STILL TRYING TO FIGURE OUT HOW
WE CAN GET IT IN FUTURE YEARS UP
A LITTLE BIT MORE.
BUT YOU CAN SEE THAT WE'VE ALSO
BEEN CONSISTENTLY TRYING TO
ENCOURAGE EARLY STAGE
INVESTIGATORS TO GET THAT FIRST
GRANT AND TO BEGIN THEIR
INDEPENDENT CAREERS, SO THE
LIGHT BLUE LINE IS THE
DIFFERENTIAL FUNDING PAYLINE FOR
EARLY STAGE INVESTIGATORS, AND
YOU CAN SEE THAT GAP THIS YEAR.
SO THE PAYLINE WAS 17 LAST YEAR.
THAT'S WHERE WE CAME UP WITH 17,
WAS TRYING TO HOLD IT AT WHERE
IT HAD PEAKED, SO SENDING A
STRONG SIGNAL TO THOSE IN THEIR
EARLY CAREERS THAT THEY ARE VERY
IMPORTANT TO US, THEY ARE OUR
NEXT GENERATION AND IT'S REALLY
ESSENTIAL THAT WE PRIORITIZE THE
WORK THAT THEY'RE BRINGING.
SO I ALSO WANT TO BRING A
REVISIT TO THE NATIONAL CANCER
PLAN.
SO THE NATIONAL CANCER PLAN,
AGAIN, AS I MENTIONED THE LAST
TIME WE TALKED, CONSISTS OF
EIGHT GOALS.
I SPENT A LOT OF TIME WITH THAT.
THIS IS EARLY ON, ABOUT THE TIME
THAT I MET WITH YOU LAST, AND
END OF KIND OF THINKING OF IT AS
THOSE EIGHT GOALS INTO TWO
DIFFERENT GROUPS.
ONE, ON THE RIGHT, HEALTH 16
CENTRIC GOALS, SO PREVENTING
CANCER, EARLY DETECTION OF
CANCER, DEVELOPING EFFECTIVE
THERAPIES, AND THEN FINALLY,
DELIVERING OPTIMAL CARE.
THAT INCLUDES SURVIVORSHIP, THAT
INCLUDES THE CARE THROUGHOUT THE
CARE EXPERIENCE, AND YOU CAN SEE
HOW THAT REALLY TAKES EVERY
POINT AT WHICH A PATIENT IS A
PART OF THIS CANCER CONTINUUM.
AND SO WHAT ARE THE OTHER FOUR
GOALS?
SO THE OTHER FOUR GOALS, I SEE
THOSE AS EMPOWERING GOALS.
IF THEY ARE APPLIED CORRECTLY,
THEY CAN ACCELERATE THE WORK
THAT WE'RE DOING IN PREVENTION
IN EARLY DETECTION, IN
DEVELOPING EFFECTIVE THERAPIES,
AND IN DELIVERING OPTIMAL CARE,
BECAUSE THOSE GOALS ARE FOCUSING
ON MAXIMIZING DATA UTILITY,
ELIMINATING INEQUITIES, ENGAGING
THE WORKFORCE AND BUILDING AN
OPTIMAL WORKFORCE, AND THEN
FINALLY, THE ONE THAT I STILL
FIND AS MY FAVORITE IS ENGAGING
EVERY PERSON.
I'VE ALSO HEARD A LOT OF
QUESTIONS ABOUT WHERE IS
DISCOVERY SCIENCE HERE?
AND DISCOVERY SCIENCE IS THE
FUEL BEHIND ALL OF THOSE AND SO
THIS GRAPHICAL REPRESENTATION
SHOWS HOW DISCOVERY SCIENCE IS A
CORE PART OF EVERY PIECE OF THE
GOALS, AND WHEN THEY WORK
TOGETHER IS WHERE THERE'S SOME
OF THE MOST POWER TO GET TO THAT
POINT THAT ARE INDICATED THERE
ON THE RIGHT, ON THE ORANGE, AND
ARE ALSO THE GOALS OF THE CANCER
MOONSHOT, IMPROVED HEALTH
OUTCOMES FOR EVERYONE AND
REDUCING CANCER MORTALITY BY 50%
BY 2047.
SO WE'VE BEEN TRYING TO
COMMUNICATE ABOUT THE NATIONAL
CANCER PLAN EARLY AND OFTEN AND
QUITE CONTINUOUSLY BECAUSE IT
CAN BE A REALLY POWERFUL ROAD
MAP, IS WHAT I HAVE FOUND.
IN A TIGHT BUDGET TIME FOCUSING
ON TRYING TO MOVE THINGS
FORWARD, I HAVE FOUND THAT
HAVING A SET OF VALUES CAN
REALLY BE VERY IMPORTANT FOR ME.
AND SO THE VALUES THAT I HAVE
BEEN PUTTING FRONT AND CENTER
AND DECISIONS THAT WE'VE NEEDED
TO MAKE ARE, NUMBER ONE, TALENT
DEVELOPMENT.
SO THAT SHOWS IN THE PAYLINE
ADJUSTMENT THAT WE DID TO MOVE
THAT TO 17%.
IN THE BUDGET DECISIONS, WE ALSO
HELD TIGHT ON OUR TRAINING
BRANCH, SO THE TRAINING BRANCH
ALSO DIDN'T RECEIVE A FURTHER
CUT.
OTHER VALUE, CREATIVITY AND
INNOVATION, AND ENABLING EVERY
GROUP TO INFUSE CREATIVITY AND
INNOVATION INTO THE WORK THAT
THEY DO.
EMPOWERMENT, SO LOOKING FOR
VOICES, AND GIVING THEM POWER,
AND FISCAL RESPONSIBILITY, WHICH
JUST HAS TO BE A PART OF WHAT WE
DO IN A TIGHT BUDGET CLIMATE.
AND THEN RESEARCH AND PROGRAM
HIGHLIGHT.
SO THIS IS WHERE I JUST WANT TO
SHOW SOME EXCITING ADVANCES IN
SOME KEY AREAS AND WHERE WE'RE
REALLY TRA TRANSFORMING CLINICAL
RESEARCH.
SO HERE IS JUST A LIST TO GIVE
YOU SORT OF SOME SENSE.
THE FIRST ONE I JUST WANT TO
POINT TO IS IN THIS REALM OF
CLINICAL RESEARCH, WHERE WE'RE
TALKING ABOUT CAN WE DO IT
FASTER, CAN WE GET IT INTO MORE
PLACES, WE DIDN'T REALLY HAVE
GOOD DATA ON HOW MANY PATIENT IN
THE CANCER COMMUNITY WERE
PARTICIPATING IN CLINICAL
RESEARCH.
AND THIS PAPER THAT JUST CAME
OUT SUGGESTS THAT THE WIDELY
TAUGHTED NUTAUGTOUTED NUMBER OFT
CORRECT, IT'S ACTUALLY QUITE
HIGHER, IT'S ACTUALLY 7%.
NOW I THINK 7% IS NOT THE NUMBER
WE NEED TO LAND AT AT THE END,
BUT IT'S GOOD TO KNOW, AND IT'S
IMPORTANT TO KNOW WHERE PEOPLE
ARE PARTICIPATING IN CLINICAL
TRIALS AND THIS PAPER IS TO SOME
LEVEL OF GRANULARITY IN LOOKING
AT WHERE PEOPLE ARE FINDING
CLINICAL RESEARCH.
SEVERAL OTHER IMPORTANT STUDIES
THAT RECENTLY CAME TO FRUITION,
ONE LOOKING AT A URINE TEST TO
IDENTIFY HIGH RISK PROSTATE
CANCERS, TO AVOID SOME OF THE
UNNECESSARY BIOPSIES THAT HAVE
BEEN A PART OF PROSTATE CANCER
CARE.
ONE REALLY LOOKING AT CHILDHOOD
CANCER SURVIVORS.
THIS IS A BIG PART OF
UNDERSTANDING SURVIVORSHIP, WHAT
DOES THAT MEAN FOR YOUR BODY,
HAVING UNDERGONE THIS TREATMENT.
THEY MAY, IN FACT, AFFECT
INDICATORS OF AGE.
AND THEN ALSO LOOKING AT
BIOMATERIALS THAT COULD ENHANCE
CANCER VACCINES, THOSE BEING A
REALLY EXCITING PART OF THE
EXPERIMENTAL THERAPEUTICS
PIPELINE.
SO BACK WHEN I INTRODUCED
DR. KIBBE, I HAD TO SAY THAT
A.I. IS PE PERMEATING EVERYWHER,
AND HERE ARE JUST A COUPLE OF
EXAMPLES.
THESE ARE TWO STUDIES THAT WERE
PUBLISHED JUST IN THE LAST
COUPLE OF MONTHS THAT USED
A.I.-DRIVEN TOOLS TO ASSESS
PATIENT READINESS OR LIKELY
RESPONSIVENESS TO T, THE FIRST D
PERCEPTION, PREDICTING WHO WOULD
RESPOND BEST TO CERTAIN
THERAPIES, AND THEN A SECOND
STUDY CALLED LORIS LOOKED
SPECIFICALLY AT IMMUNOTHERAPY.
ALLOWING PATIENTS TO BE ABLE TO
HAVE MORE CONFIDENCE ABOUT --
AND THEIR PROVIDERS TO HAVE MORE
CONFIDENCE ABOUT WHETHER A
TREATMENT IS THE RIGHT OPTION
FOR THEM.
BECAUSE YOU WANT THE OPTION THAT
HAS THE BEST CHANCE TO BE
SUCCESSFUL.
THEN THIS IS BACK TO THE 360
ERA, HOW DO WE TRANSFORM
CLINICAL RESEARCH IN A WAY THAT
ALLOWS US TO GET CLINICAL
STUDIES INTO A MUCH BROADER
POPULATION.
SO FIRST IS UTILIZING
DECENTRALIZED CLINICAL TRIAL
DESIGNS, AND WE'RE WORKING VERY
ACTIVELY ON WAYS THAT WE CAN
BRING CLINICAL TRIALS INTO
COMMUNITIES AND INTO HOMES WHERE
THEY'RE MOST APPROPRIATE.
I HAVE AN EXAMPLE OF THAT COMING
UP AND I'LL POINT TO IT IN THE
NEXT SLIDE.
WE'RE ALSO PILOTING -- OH, NOT
QUITE YET.
WE'RE ALSO PILOTING A VIRTUAL
CLINICAL TRIALS OFFICE.
THIS IS AN INVENTION THAT CAME
FROM THE PANDEMIC.
WE CAN DO A LOT MORE VIRTUALLY
THAN WE PREVIOUSLY THOUGHT WAS
POSSIBLE.
INCLUDING ELIGIBILITY CRITERIA
FOR CLINICAL STUDIES, INCLUDING
DOING DATA COLLECTION.
IT DOESN'T NECESSARILY REQUIRE
SOMEONE WITH BOOTS ON THE GROUND
IN THAT OFFICE.
A LOT OF THAT CAN BE DONE
VIRTUALLY.
WE'RE ALSO LEANING HARD ON OUR
CLINICAL TRIALS INNOVATION UNIT
AS A GROUP THAT CAN HELP TO
SPEARHEAD CLINICAL TRIAL
STREAMLINING, AND I JUST WANT TO
GIVE A SHOUT OUT TO THE MATCH
STUDIES.
SO THE ORIGINAL MACH TRIAL WAS
ONE OF THE FIRST TO REALLY
PIONEER THE PRECISION MEDICINE
ONCOLOGY MATCH THE MUTATION TO
THE DRUG AND SEE WHAT HAPPENS.
IT WAS A RADICAL TRANSFORMATION
IN THE WAY WE DO CANCER CLINICAL
TRIALS, AND THE SUCCESSORS,
MYELOMATCH, COMBO MATCH AND
IMMUNOMATCH ARE ALL ON THE
HORIZONS, MYELOMATCH ALREADY
OPENED A WEEK OR TWO AGO, AND I
THINK HAS ALREADY ENROLLEDDITY
FIRST PATIENT.
SO THESE ARE EXAMPLES OF SOME OF
THE TRANSFORMATION THAT'S COMING
FOR THE CLINICAL RESEARCH AREA.
SO I THINK I'VE MAYBE ALREADY
BEATEN THIS QUITE A LOT, BUT
AGAIN, BACK IN MY ASCO
PRESENTATION, MOVING FORWARD
FASTER, WH WHAT I ASKED FOR PEOE
TO DO, AND BY PEOPLE, I MEAN
CLINICAL INVESTIGATORS, I MEAN
FUNDERS OF CLINICAL RESEARCH,
THAT'S US, BUT ALSO INDUSTRY
SPONSORS, OTHERS, AND THE
PATIENTS AND ADVOCACY GROUPS TO
BE IMPATIENT ABOUT THIS, AND TRY
TO BE IMPATIENT IN A WAY THAT
ALLOWS US TO MOVE THIS IN A MUCH
FASTER SPACE.
WHAT WE'RE DOING, HOW YOU MOVE
FASTER IS YOU LOOK AT
BOTTLENECKS.
WE'RE TAKING SCIENTIFIC
DISCOVERY, WE KNOW THAT WE CAN
ASK A QUESTION IN THE CLINICAL
WORK SPACE, AND WE KNOW THAT
THERE ARE MANY STEPS THAT HAVE
TO BE UNDERTAKEN.
SOME OF THOSE CAN BE DONE IN
PARALLEL.
SOME OF THOSE COULD BE EXCLUDED.
AND SOME OF THEM CAN ALLOW US TO
GET MORE QUICKLY INTO THE HANDS
OF PATIENTS BY IDENTIFYING WHERE
THOSE BOTTLENECKS ARE AND
ADDRESSING THEM HEAD-ON.
SO THIS IS SOME OF THE OTHER
STUDIES THAT I WANTED TO
HIGHLIGHT.
THAT TALK ABOUT -- THAT SPEAK TO
THE TRANSFORMATION OF CLINICAL
RESEARCH.
SO FIRST ON THE LEFT IS THE
VANGUARD STUDY.
WE ARE VERY INTERESTED IN HOW
THESE MULTI-CANCER DETEPTION DEN
TESTS THIS, IS A BLOOD TEST THAT
CAN GIVE YOU AN ASSESSMENT OF
YOUR RISK FOR A VARIETY OF
COMMON TUMORS.
THERE ARE LOTS OF COMPANIES THAT
ARE BRINGING THESE KIND OF TOOLS
TO MARKET AND WE DON'T KNOW,
WHAT WILL WE DO WHEN IT'S A
POSITIVE TEST AND WE DON'T FIND
A TUMOR TO MAMP TO.
SOMETIMES THAT WILL MEAN A TUMOR
THAT'S ON THE HORIZON, SOMETIMES
IT WON'T.
WHAT WILL IT MEAN TO GET A
POSITIVE TEST IN TERMS OF THE
FOLLOW-UP, AND DO WE KNOW HOW TO
REFER PATIENTS EFFECTIVELY TO
THE NEXT STAGE?
SO THIS IS A TRIAL THAT WILL
ADDRESS SOME OF THESE QUESTIONS,
AND HELP US LEARN A NEW FUTURE
WHERE WE HAVE ACCESS TO THESE
KINDS OF SCIENCE FICTION TYPE OF
TOOLS, BUT WE HAVE TO BE ABLE TO
USE THEM EFFECTIVELY.
SO THAT WILL BE A PART OF THE
UNIQUE NETWORK, SO THIS IS WORK
THAT HAPPENS IN THE PRIMARY CARE
SPACE TO LEE'S COMMENT EARLIER,
THIS KIND OF EARLY DETECTION
DOESN'T HAPPEN IN THE
ONCOLOGIST'S OFFICE, SO IT'S
IMPORTANT THAT WE PARTICIPATE
SIDE BY SIDE WITH OUR COLLEAGUES
IN PRIMARY CARE IN UNDERSTANDING
THESE KINDS OF ADVANCES.
ANOTHER ONE, AND THIS IS THE ONE
I REFERRED TO EARLIER, IS REALLY
MOVING TO PUTTING SOME OF THESE
STUDIES RIGHT INTO THE HANDS OF
PATIENTS IN THEIR HOMES.
THIS STUDY IS NOT IN THE HOME
JUST YET.
IT CALLED THE SHIP TRIAL.
IT'S SELF COLLECTION FOR HPV.
SO ALLOWING INDIVIDUAL TO
SELF-SAMPLE FOR HPV FOR CERVICAL
CANCER TO KNOW WHAT THEIR RISK
LIKELY IS, HOW MUCH THEY NEED TO
HAVE FURTHER TESTING TO
ELIMINATE THEIR RISK FOR SEVERAL
CANCER OR TO MAPPAGE A CERVICAL
CANCER IF THAT'S THE CASE.
THE CURRENT VERSION OF THE STUDY
WILL BE SELF-COLLECTION THAT
HAPPENS IN THE DOCTOR'S OFFICE.
BUT FUTURE ITERATIONS OF THE
STUDY WILL OFFER THIS TO BE
TESTED AT HOME.
BECAUSE WE CAN EMPOWER PATIENTS
TO OWN THEIR OWN HEALTHCARE.
AND THEN THIS HAPPENS NOT JUST
IN THE ECOSYSTEM OF AMERICA, BUT
A LOT OF THESE QUESTIONS ARE
GLOBAL ONES.
AND I JUST WANTED TO POINT OUT
HERE THAT WE ARE WORKING VERY
CLOSELY WITH GLOBAL COLLEAGUES
WHO HAVE -- MY COUNTERPARTS FOR
CANCER AROUND THE COUNTRY WITH
QUESTIONS LIKE HOW TO TEST FOR
HPV, THE EXAMPLE HERE, HPV
ONE-DOSE VACCINE, SO CAN YOU GET
THE SAME LEVEL OF PROTECTION
WITH A SINGLE DOSE COULD
RADIALLY CHANGE THE WAY THIS
VACCINE IS DELIVERED, AND OTHER
PARTNERSHIPS AROUND THE WORLD.
AND I'VE ALREADY MENTIONED A
COUPLE OF TIMES THAT ONE THING
WE REALLY WANT TO DO IS TO MAKE
SURE THAT CLINICAL RESEARCH IS
REACHING THE COMMUNITIES WHERE
PATIENTS ARE.
AND THIS IS A WORKING GROUP THAT
WE PUT TOGETHER THAT TAKES
ADVANTAGE OF THIS ALL OF
GOVERNMENT -- ACTUALLY IT'S MORE
THAN GOVERNMENT APPROACH.
THE CO-CHAIRS OF THIS GROUP ARE
SOMEONE FROM THE AMERICAN CANCER
SOCIETY, BILL DAHUT, AND RAY
OSAROGIABON AND OUR EXECUTIVE
SECRETARY, ANDREA DENICOFF, WHO
WORKED IN PARTNERSHIP WITH THE
VA TO SET UP SOME CLINICAL
RESEARCH THERE AS WELL.
THE MEMBERS COME FROM ACROSS THE
CONTINUUM, FROM THE VA, FROM THE
DEPARTMENT OF DEFENSE, FROM THE
INDIAN HEALTH SERVICE, FROM CMS,
FROM HHS, ALL TOGETHER WORKING
TO FIND SOLUTIONS WHERE THERE IS
CAPACITY IN OUR SYSTEMS TO BE
ABLE TO DO CLINICAL RESEARCH OR
WHERE THERE ARE GAPS WHERE WE
NEED TO FILL.
SO THIS GROUP IS VERY ACTIVELY
TAKING ON THIS PROJECT AND I'M
REALLY EXCITED TO SEE WHAT THEY
BRING FORWARD.
AND IN ALL OF THIS I JUST WANT
TO MAKE SURE YOU KNOW HOW
COMMITTED I AM TO HEARING FROM
THE COMMUNITY A COUPLE OF WAYS.
ONE IS WE HAVE A COUPLE OF TIMES
NOW PUT OUT CALLS TO ASK FOR
ONLINE INSIGHTS THROUGH TWITTER
X, THROUGH LINKEDIN, THROUGH
INSTAGRAM, THROUGH FACEBOOK.
WE'VE ASKED QUESTIONS LIKE HOW
CAN WE REIMAGINE CLINICAL
RESEARCH TO ACCELERATE PROGRESS
FOR PEOPLE WITH CANCER.
AND IT'S BEEN THRILLING TO SEE
THE KINDS OF RESULTS THAT WE
GET, EVEN FROM THIS ONLINE
FORUM.
PROBABLY AS IMPACTFUL SO FAR HAS
BEEN MY FACE-TO-FACE MEETINGS
WITH ADVOCATES, WITH TRAINEES.
I JUST YESTERDAY VISITED TWO
NCORP SITES, THESE ARE COMMUNITY
CLINICAL RESEARCH SITES, AND
ASKING QUESTIONS AND LEARNING
WHAT'S ON PEOPLE'S MINDS.
SO I WILL BE ASKING FOR THAT
FROM YOU AS WELL.
AND THEN FINALLY, ONE THING THAT
WE'VE INITIATED AND WILL HAPPEN
LATER IN JULY IS A NEW ANNUAL
SCIENTIFIC PRIORITIES RETREAT TO
BRING TOGETHER ALL OF OUR MAJOR
LEADERS WITHIN THE NCI, AND ALL
OF OUR BOARD MEMBERS -- OR BOARD
CHAIRS FROM THE SIX BOARDS, S TO
DO A DEEP DIVE IN WHERE WE NEED
TO BE MAKING OUR INVESTMENTS.
SO REALLY EXCITED TO SEE HOW
THIS TURNS OUT.
ALSO WANT TO MAKE SURE YOU KNOW
ABOUT THE CANCER CABINET.
THIS IS A COMMUNITY OF THE ALL
OF GOVERNMENT COMPONENT OF THE
CANCER MOONSHOT.
IT TAKES UP A VARIETY OF ISSUES.
YOU SAW IN THE LAST
PRESENTATION, THIS IS WHERE THE
INITIATIVE TO REALLY PUSH
FORWARD FOR SURVIVORSHIP CAME
FROM, AND WE HAVE AN UPCOMING
COMMUNITY CONVERSATION FOCUSING
ON CLINICAL TRIALS, THE TOPIC OF
TODAY, HOW TO BRING RESEARCH TO
RURAL COMMUNITIES AND OTHER
MEDICALLY UNDERSERVED GROUPS, SO
REALLY EXCITED FOR THIS WORK
GOING FORWARD.
AND SO FINALLY, WHAT CAN I --
WHAT DO I NEED FROM YOU?
THIS IS MY QUESTIONS LIST THAT I
JUST HAVE TO TELL YOU WHEN WE
MET THE LAST TIME, I CAN'T
REMEMBER WHICH ONE OF YOU BUT
SOMEONE SAID IF YOU WANT US TO
TELL YOU THINGS, YOU'VE GOT TO
ASK US SOME QUESTIONS.
SO I'VE BEEN DOING THIS WITH ALL
OF MY BOARDS SINCE THAT
CONVERSATION, AND I'M HAPPY TO
TAKE OTHER COMMENTS BUT WHAT I
NEED, AS YOU CAN SEE, CLINICAL
STUDIES ARE TOP OF MIND.
AND I WOULD LOVE TO KNOW HOW WE
SHOULD BE BEST ENGAGING THE
ADVOCACY COMMUNITY FOR CLINICAL
STUDY INNOVATION IF WE REALLY
WANT TO MAKE A TRANSFORMATION
HAPPEN.
WE WANT TO MOVE FURTHER FASTER.
OPEN TO SUGGESTIONS ON HOW TO DO
THAT.
I'M ALSO INTERESTED IN HOW WELL
THE NCI DESIGNATED CANCER CENTER
COMMUNITY OUTREACH ENGAGEMENT
PROGRAM DOES IN WORKING WITH THE
LOCAL COMMUNITY.
I KNOW THAT OUR CANCER CENTERS
PUT A LOT OF EFFORT INTO THAT.
IS IT WORKING, AND HOW COULD WE
AMPLIFY THEIR EFFORTS?
AND THEN FINALLY, WHAT ISSUES
WOULD YOU ALL ENCOURAGE US TO
ADDRESS?
SO THOSE ARE MY QUESTIONS FOR
TODAY.
BUT HAPPY TO TURN INTO A
CONVERSATION AND HEAR FROM YOU.
SO I THINK THAT'S MY LAST SLIDE.
OH, NO, THERE'S MORE!
JUST SOME CLOSING THOUGHTS.
WE HAVE SOME TOUGH BUDGET
REALITIES.
WE ARE DEALING WITH.
WE EXPECT THAT FY 25 WILL BE THE
SAME.
BUT THERE IS NO SLOWING DOWN.
THERE'S SO MUCH GOOD WORK TO DO.
THE TIME IS REALLY PERFECT FOR
TRANSFORMING CLINICAL RESEARCH
AND UTILIZING THESE DISCOVERS
AND TECHNOLOGIES AND MOVING THEM
FORWARD, SO WE REALLY HAVE NO
CHOICE, WE HAVE TO MOVE FORWARD
AND WE WILL FIND A WAY.
SO I THINK THAT REALLY IS MY
LAST SLIDE.
THANK YOU.
AND I AM VERY HAPPY TO TAKE
COMMENTS AND QUESTIONS.
>> WELL, THANK YOU SO MUCH,
DR. RATHMELL, FOR THAT VERY
COMPREHENSIVE AND VERY EXCITING
UPDATE.
I CAN'T BELIEVE SO MUCH HAS
HAPPENED SINCE WE'VE SEEN YOU
LAST.
IT JUST IS ENOUGH TO MAKE YOUR
HEAD SPIN, AND I KNOW A LOT OF
PEOPLE ARE GOING TO HAVE A LOT
OF QUESTIONS AND WANT TO ANSWER
YOUR QUESTIONS.
BUT WHILE WE'RE WAITING FOR
EVERYONE TO RAISE THEIR HANDS, I
DID HAVE SOMETHING THAT KIND OF
POPPED OUT AT ME BACK FOR THE
SELF-COLLECTION FOR HPV TESTING.
IS THERE A MALE VERSION OF THE
TEST?
IT SEEMS LIKE IF WE'RE ONLY
COLLECTING ON HALF THE
POPULATION, IT'S ONLY HALF THE
PROBLEM.
>> SO THE ANSWER IS SORT OF YES
AND SORT OF NO.
SO HPV IS A PROBLEM FOR BOTH MEN
AND WOMEN AND THERE IS AN ANAL
HPV TEST THAT ANYONE CAN USE.
THIS ONE, THE SUBSEQUENT
QUESTIONS ARE REALLY SPECIFIC TO
CERVICAL SCREENING SO THAT'S WHY
IT'S A CERVICAL TEST.
>> OKAY.
THANKS.
AND I'LL GO AHEAD AND TALK A
LITTLE BIT ABOUT YOUR MIDDLE
QUESTION ON CANCER CENTERS AND
TRYING TO INCREASE COMMUNITY
ENGAGEMENT AND ALL THAT.
WHAT I'M HEARING FROM WHERE I AM
IS THAT CANCER CARE IS PROFIT
ITABLE, THERE ARE MULTIPLE
HEALTH SYSTEMS AND HOSPITALS IN
PLACE, MORE AND MORE PEOPLE ARE
GETTING INTO THAT DELIVERY
SPACE, AND MAKING IT HARDER TO
GET, KEEP UP THE PATIENT VOLUME.
BUT I KNOW THAT THERE ARE
EXTRAORDINARY EFFORTS HAPPENING
TO CONNECT WITH COMMUNITIES IN
THE CATCHMENT AREAS.
BUT IT'S LIKE THAT DOESN'T SEEM
LIKE A PROBLEM RESEARCH CAN FIX.
>> WELL, I IT IS AND IT ISN'T.
I CAME FROM THAT ENVIRONMENT
BEFORE NOW.
BUT IT'S ACTUALLY ONE OF THE
THINGS THAT I LOVE IN MY CURRENT
JOB, IS THAT I DON'T HAVE TO
WORRY ABOUT THAT TYPE OF
COMPETITION.
IT'S A DIFFERENT TYPE OF
COMPETITION THAT I'M GLAD TO BE
IN.
AND IT IS REALLY INTERESTING.
ONE OF THE SESSIONS THAT WE HAD
TODAY A MODEL FOR AT LEAST SOME
PATIENTS, YOU HAVE TWO
ONCOLOGISTS, THE ONE AT THE
ACADEMIC CENTER AND THE ONE
THAT'S CLOSE TO YOUR HOME AND
ARE THERE WAYS THAT WE CAN
MAXIMIZE THOSE TWO
RELATIONSHIPS.
AND YET I KNOW THAT THAT EACH
CENTER IS REALLY VYING FOR THOSE
PATIENTS FOR FOR REVENUE.
AND SO WE HAVE TO BE HONEST
ABOUT WHAT SOME OF THE VARIOUS
INCENTIVES AND DRIVING FORCES
ARE WHEN WE MAKE THESE
DECISIONS.
>> RIGHT, AND TO SPEAK TO THAT
TOO, CROSSING STATE LINES, ONE
MEDICAL ONCOLOGIST SAID TO ME, I
WOULD LOVE TO CONTINUE TO GIVE
MORE SECOND OPINIONS AND
TREATMENT RELATED DISCUSSIONS
BUT WITH THE TELEHEALTH AND SOME
OF THE ROLLBACK FOR PRECOVID,
THAT WOULD BE A WAY TO BRING
WORLD CLASS CANCER CARE TO
EVERYBODY, PERHAPS, BUT AS FAR
AS BRAIN POWER.
>> TOP OF DISCUSSION TODAY, BY
THE WAY.
>> EXCELLENT.
>> YES.
I DON'T KNOW IF WE'LL GET IT
DONE BUT, BOY, HAVING INTERSTATE
TELEHEALTH, SPECIFICALLY FOR
CLINICAL TRIALS BUT REALLY EVEN
MORE --
>> THAT WAS SO MEANINGFUL ?R.
HIGHLY VALUABLE.
>> THANK YOU.
JACKIE, YOU HAVE YOUR HAND UP.
>> YES, HELLO.
PIGGY BACKING ABOUT WHAT ANNIE
WAS TALKING ABOUT, COMMUNITY
ENGAGEMENT FOR NCI -- I SIT ON A
COMMITTEE FOR MOFFITT CANCER
CENTER, THAT'S OUR CHARGE, IS
CREATING AND THEN EVALUATING THE
COMMUNITY ENGAGEMENT STRATEGY,
AND ONE OF THE THINGS THEY'VE
DONE WHICH I DO APPRECIATE
HAVING BEEN TREATED HERE AND
LIVING IN THE STATE IS CREATING
SATELLITE CENTERS THROUGHOUT THE
STATE SO THAT THEY REALLY ARE
ABLE TO REACH MORE PATIENTS.
I KNOW THAT WHEN I WAS A
PATIENT, IT WAS AN HOUR AND A
HALF DRIVE, AND FOR MY CLINICAL
TRIAL, I WOULD HAVE TO DRIVE
THAT FAR JUST FOR BLOOD DRAWS,
DRIVING AN HOUR AND A HALF AND
THERE WERE PEOPLE IN THE
CLINICAL RESEARCH UNIT WITH ME
WHO ASKED HOW ARE YOU ABLE TO
AFFORD THIS, THERE'S GAS, SOME
PEOPLE HAVE TOLLS, AND IT MADE
PARTICIPATION COST PROHIBITIVE,
SO THAT'S ONE THING THAT I SEE
AS A POSITIVE, AND ALSO MAKING
SURE THAT IN THOSE AREAS, THEY
ARE LOOKING AT WHICH CANCERS ARE
PREVALENT AND HAVING SPECIALISTS
THERE AND THEN MAKING AN EFFORT
TO PARTNER WITH COMMUNITY-BASED
ORGANIZATIONS ON THE GROUND IN
THOSE AREAS TO REACH THOSE
POPULATIONS.
PARTICULARLY THOSE WHO -- I
MEAN, IT'S FLORIDA, FLORIDA IS
DEFINITELY AN INTERNATIONAL
STATE, MAKING SURE WE HAVE
PEOPLE THAT SPEAK LANGUAGES AND
SO PEOPLE FEEL COMFORTABLE AND
WE MEET THEM WHERE THEY ARE AND
THE LAST THING, THIS IS
SOMETHING I'M PROUD OF AS A
MELANOMA SURVIVOR, IT STARTED IN
MELANOMA, THEY HAD -- BACK THEN
IT WAS CALLED THE MOLE PATROL,
AND IT WAS A MOBILE SKIN CANCER
SCREENING, AND WE WOULD GO IN
THE SPRING TO BASEBALL SPRIRNG
TRASPRINGTRAINING CAMPS AND PROE
AWARENESS.
PEOPLE HAD NEVER SEEN SOMEONE
THAT LOOKED LIKE ME WHO HAD
MELANOMA, SO I WAS ABLE TO REACH
PEOPLE AND SAY YES, NOT ONLY
BEING DARKER, CAN YOU DEVELOP
THIS BUT ALSO BEING YOUNGER, AS
I WAS 22 WHEN I WAS DIAGNOSED.
AND THEY HAVE CREATED OTHER
MOBILE CANCER SCREENING MOBILES,
IF YOU WILL, AND I THINK THAT'S
BEEN SOMETHING ELSE THAT REALLY
HAS BEEN A CONNECTION BECAUSE
FOLKS ARE SEEING THAT THIS
CANCER CENTER, THEY'RE SEEING
PRACTITIONERS AND SEEING AN
INVESTMENT IN THE COMMUNITY
BECAUSE WE'RE BRINGING
HEALTHCARE TO THEM INSTEAD OF
EXPECTING THEM TO COME OUT AS
WELL.
SO THOSE ARE JUST THREE THINGS
THAT I CAN --
>> THAT'S REALLY GOOD.
THAT'S REALLY HELPFUL FOR ME AS
WELL AS I'M STARTING TO TALK TO
THE CANCER CENTERS AND HELP MAKE
SURE THAT THEY'RE SHARING BEST
PRACTICES.
SO I MAY PING MOFFITT TO BE ONE
OF THE ONES ON THE GROUP TO TALK
ABOUT THAT.
THAT'S AWESOME.
AND I'M ALWAYS A SUCKER FOR A
GOOD PUN, SO I REALLY LOVE MOLE
PATROL.
>> KRISTEN.
>> HI.
THANK YOU FOR THE OVERVIEW.
IT WAS INTERESTING AND I LEARNED
SOME AND TOOK NOTES SO I
APPRECIATE THAT.
I HAVE A FEW SOMEWHAT RAMBLING
THOUGHTS THAT JUST AS MY LAST
MEETING, THINGS THAT I AM
PERSONALLY PASSIONATE ABOUT THAT
I WOULD LOVE TO SEE MORE EFFORTS
AND RESOURCES PUT BEHIND.
SO STARTING WITH CATCHING PEOPLE
EARLY AND SCREENING AND EARLY
DETECTION, THAT'S HUGE.
AS CANCER SURVIVOR, I THINK
THERE'S TONS OF THINGS GOING ON
IN MY BODY THAT SOMEDAY I'LL
FIND OUT ABOUT.
IF I COULD FIND OUT EARLIER,
THAT WOULD BE COOL BUT AGAIN, AS
YOU MENTIONED, IF YOU CAN'T DO
ANYTHING ABOUT IT, THAT'S SCARY
AND FRUSTRATING.
AND UNDERSTANDING RISK FACTORS
AND THEN FIGURING OUT WHAT TO DO
ABOUT THEM IF THERE IS ANYTHING
THAT CAN BE DONE TO PREVENT MORE
CANCERS.
LIKE JACKIE, I JUST HAD TWO MEL
MONA TWOMELANOMA CHUNKS REMOVEDY
HEAD I GO KIDNEY CANCER
MELANOMA, WHAT ELSE IS GOING TO
HAPPEN.
I HAVE A LITTLE GROWTH ON MY
THYROID, THAT'S OF UNKNOWN
SIGNIFICANCE, SO, GREAT, WHAT'S
GOING ON, WHAT CAN WE DO AROUND
SCREENING/PREVENTION.
I'M PART OF THE ALL-OF-US
RESEARCH PROGRAM.
I'M PERSONALLY REALLY JAZZED
ABOUT THAT.
GETTING PEOPLE TO SHARE THEIR
INFORMATION SO THAT WE CAN
UNDERSTAND MORE SO THE POWER OF
DATA AND WHAT CAN THE NCI DO TO
KIND OF PROMOTE THAT.
WHEN I REGISTERED, I DID THE
SALIVA TEST, THERE WAS NOWHERE
WITHIN 50 MILES OF D.C. TO DO
THE BLOOD WORK.
THAT SEEMED WILD TO ME.
I REACHED OUT TO VINCE AND I
THINK AMY ABOUT IT, AND VINCENT
SENT ME ALL THE INFORMATION FOR
PEOPLE TO CON T CONTACT THROUGHE
ALL-OF-US PROGRAM WHICH I
HAVEN'T DONE YET, BUT THAT'S
JUST WILD, IN D.C. , LIKE I
CAN'T GO SOMEWHERE?
SO FORMING PARTNERSHIPS TO MAKE
THAT A MORE IMPACTFUL PROGRAM.
I'M LIKE JAZZED ABOUT IT, SO IT
COULD JUST BE ME BUT I FEEL LIKE
THERE'S A LOT OF VALUE TO THAT.
BUT THEN WHAT I REALLY THINK
COULD BE HELPFUL FOR PATIENTS IS
LOOKING AT -- OR HAVING MORE
RESEARCH AROUND PALLIATIVE CARE.
WE KNOW IT WORKS, WE KNOW IT
WORKS WELL.
YOU MENTIONED THAT THE
360 APPROACH FOR NCI BUT
PALLIATIVE CARE REALLY IS 360,
SO LOOKING AT THE WHOLE PERSON,
WHAT'S GOING ON WITH THEM, THEIR
FAMILY, HOW CAN WE DO MORE OF
WHAT'S GOOD, STOP DOING WHAT'S
BAD, FOR INDIVIDUALS.
BUT WE NEED MORE DATA TO HAVE
PEOPLE PUT RESOURCES BEHIND
PALLIATIVE CARE, SO I'M EXCITED
ABOUT THAT.
AND THE LAST ONE IS BIOMARKER
TESTING COMING FROM ONE CANCER
AND OTHER CANCERS, HEY, LIKE, AT
SOME POINT HOPEFULLY WILL FLAG
SOMETHING BUT WE DON'T KNOW THAT
NOW, BUT I KNOW WE'RE MOVING IN
THE RIGHT DIRECTION, BUT
WHATEVER WE CAN DO AROUND THAT
AND PRECISION MEDICINE,
PERSONALIZED MEDICINE.
SO IT WAS A LOT RAMBLING, I
APOLOGIZE.
>> I GOT THEM DOWN.
AWESOME.
THOSE ARE ALL THINGS, AND GIVES
ME IDEAS FOR THINGS TO BRING
HERE FOR YOU GUYS TO HEAR ABOUT
UPDATES ON AND BE ABLE TO TALK
TO THE PEOPLE WHO ARE LEADING
THINGS IN THE DETECTION AND
BIOMARKER AND PALLIATIVE CARE
RESEARCH ARENA.
AND MAYBE TO GET ALL-OF-US TO
COME UP HERE AND TALK TO YOU
ALL.
>> AND LEE?
>> THANKS.
SO I SERVE ON A COUPLE OF
IRBs, AND ONE OF THE THINGS
THAT I'VE REALLY COME TO MY
FOCUS IS THAT THE WHOLE CLINICAL
TRIAL PROCESS WAS DEVELOPED IN
THE CHEMOTHERAPY YEARS.
SO THE FACT THAT WE HAVE THE
THREE PHASES, THE FACT THAT YOU
HAVE MAXIMUM TOLERATED DOSE IN
PHASE ONE, I STILL SEE MAXIMUM
TOLERATED DOSE IN IMMUNOTHERAPY
AND TARGETED THERAPY TRIALS
WHICH DRIVES ME CRAZY TO SEE
THAT, BUT IT SEEMS LIKE WE HAVE
TO RECONSIDER THE CLINICAL TRIAL
PROCESS AND MAYBE HAVE A
SEPARATE ONE FOR IMMUNOTHERAPY,
FOR TARGETED THERAPIES, AND FOR
CHEMOTHERAPY, BECAUSE YOU KNOW
WITH CHEMOTHERAPY, THE MORE YOU
GIVE THE PATIENT UP TO THEIR
TOLERABLE LEVEL, THE BETTER IT
WILL WORK.
THAT'S NOT TRUE FOR
IMMUNOTHERAPY OR TARGETED
THERAPIES.
SO -- AND IN FACT WE SEE A LOT
OF ACCELERATED APPROVALS FOR
IMMUNOTHERAPY.
-- DON'T THINK NECESSARILY TSH
YOU CAN FIND SOME ACTION AGAINST
THE CANCER CELLS QUITE EARLY ON
IN THE PROCESS.
SO SEEMS LIKE WE MAYBE NEED TO
CONSIDER, REINVENT THE WHOLE
CLINICAL TRIAL PROCESS BASED ON
WHAT DRUGS YOU'RE ACTUALLY
TESTING.
AND ALSO THE FACT THAT MOST OF
THE CLINICIANS AND SCIENTISTS
THAT I WORK WITH WITH THE IRBs
STILL CONSIDER CLINICAL TRIALS
TO BE ALL SCIENCE, AND THEY'LL Y
DON'T CONSIDER THE PATIENT
PERSPECTIVE.
PATIENTS CONSIDER TO BE
TREATMENT, SOMETIMES THE BEST
TREATMENT, MAYBE THE LAST
POSSIBLE TREATMENT.
SO THEY'RE NOT REALLY SUBJECTS,
THEY'RE -- I ALWAYS CALL THEM
PARTICIPANTS.
SOME CALL THEM -- BUT MAYBE WE
HAVE TO CHANGE THE LANGUAGE SO
THAT WE'RE NOT REFERRING TO US
LIKE LAB ANIMALS, WE'RE
PARTICIPANTS.
WE'RE PARTICIPATING IN SCIENCE.
>> EXCELLENT.
>> THANKS, LEE.
AND I WANT TO PIGGY BACK ON THE
IRB PERSPECTIVE, IS THAT AS LONG
AS OUR HUMAN SUBJECTS PROTECTION
LANGUAGE INCLUDES THE WORD
SUBJECT, IT'S GOING TO SEEP INTO
PATIENT-FACING SPACES.
AND I KNOW THAT WOULD TAKE
DECADES TO UPDATE TO MORE
PATIENT CENTRIC LANGUAGE, BUT I
COMPLETELY AGREE WITH YOU ON
THAT LANGUAGE.
THANK YOU, LEE.
VICKIE, YOU HAVE SOMETHING TO
ADD?
>> WELL, IT'S REALLY A QUESTION
I THINK FOR THE GROUP RATHER
THAN DR. RATHMELL, ALTHOUGH I
APPRECIATE THE PRESENTATION.
AS Y'ALL KNOW, I REPRESENT
CHILDREN WITH CANCER, AND SO THE
THING ABOUT CHILDREN WITH CANCER
IS THAT IT'S RARE AND I KNOW
SEVERAL OF YOU ARE ALSO IN
SUBTYPES THAT ARE PRETTY RARE,
WE DON'T HAVE A TON OF INDUSTRY
CLINICAL TRIALS GOING ON, AND SO
WE'RE REALLY, REALLY KIND OF
PLOWING TOWARDS MULTI-CONTINENT,
MULTI-INSTITUTION TRIALS AND I
JUST WONDERED, IS THAT THE SAME
THING HAPPENING IN THE SPACES
THAT Y'ALL ARE IN, BECAUSE IT
SEEMS LIKE REALLY THE ONLY WAY
TO HUSBAND THE RESOURCES WE HAVE
IS TO EXPAND WHERE WE ENROLL
KIDS, WHETHER IT'S IN AUSTRALIA
OR CANADA OR GERMANY OR
WHATEVER, AS PART OF PLATFORM
TRIALS OR WHATNOT.
I'M JUST CURIOUS WHERE YOU GUYS
ARE IN THE ADULT SPACES.
>> VICKIE, IF I CAN ADDRESS
THAT, I AM JUST SO JEALOUS OF
THE CHILDHOOD CANCER RESEARCH
COMMUNITY BECAUSE THEY'VE BEEN
COLLABORATING AND WORKING
TOGETHER FOR A REALLY LONG TIME
AND ARE REALLY THE MODEL OF HOW
THINGS SHOULD BE DONE.
BUT I THINK IN CERTAIN CANCER
SPACES, AND I'M TALKING ABOUT
THE OVARIAN SIDE BECAUSE THAT'S
WHERE I'M MORE FAMILIAR, IT'S
GOTTEN TO THAT EVEN -- THE
SUBTYPES OF EACH ONE, WE'RE
GETTING MOLECULARLY BASED AND
PRETTY SOON THESE TRIALS ARE
GETTING SMALLER AND SMALLER AND
MORE TARGETED AND MORE FOCUS ON
EVEN WITHIN RARE SUBTYPES, YOU
KNOW, AND LIKE I THINK IN COLON
CANCER, IT'S -- THERE'S JUST A
LOT OF MOVING PIECES, AND THE
DRUGS THAT ARE BEING DEVELOPED
ARE FOR, LIKE, CANCER OF THE
RIGHT EYEBALL FOR PEOPLE WITH
HAZEL EYES.
AND I THINK THOSE TYPES OF
TRIALS ESPECIALLY, YOU KNOW,
WHEN THEY'RE TRYING TO -- YOU
KNOW, THE REGISTRATION TRIALS
AND THEY'RE TRYING TO GET
APPROVAL, IT'S GOING TO TAKE
GLOBAL EFFORTS AND COOPERATION
TO GET THINGS DONE.
I DON'T KNOW -- I'LL ASK OUR
COLLEAGUES IN THEIR CANCER
TYPES, HOW MANY TRIALS THEY'RE
SEEING FOR ALL-COMERS THESE
DAYS.
YOU KNOW, AND THE OTHER THING
TOO IS, I'M REALLY GLAD TO HEAR
THAT THERE'S THE MATCH
SUCCESSION HAPPENING BECAUSE WE
LIKE THE PLATFORM TRIALS.
ESPECIALLY WHEN YOU CAN PLUG IN
ARMS AND THINGS LIKE THAT, AND
USE THAT SAME LEVERAGE, YOUR
ADMINISTRATIVE AND THE CORE
THINGS THAT ARE HAPPENING AND
NOT HAVE TO REINVENT AND REWRITE
THE PROTOCOL AND GO THROUGH THE
PAIN OF APPROVALS.
SO THERE'S A LOT OF THINGS IN
THAT WAY.
BUT I'LL STOP THERE SO OTHERS
CAN ADDRESS VICKIE'S QUESTION.
>> I'LL JUMP IN THOUGH I'M NOT
SURE I CAN SAY IT BETTER.
I THINK WHAT YOU SAID IS EXACTLY
RIGHT, IN FACT THE PEDIATRIC
GROUPS HAVE REALLY LED THE WAY
IN HOW TO DO THIS VERY WELL.
STILL WITH ROOM FOR IMPROVEMENT.
I MET WITH THE EORTC LEADERSHIP
WHEN I WAS AT ASCO, SUDDENLY
BLANKING ON HOW THAT ACRONYM
WORKS BUT IT'S THE EUROPEAN
ONCOLOGY SOMETHING,
TRANSLATIONAL RESEARCH.
AND THEY -- WHAT THEY WANTED TO
TALK ABOUT WAS RARE TUMOR TYPES
AND HOW DO WE POOL OUR
RESOURCES, BECAUSE SOME OF THESE
DISEASES ARE SO UNCOMMON THAT IN
ORDER TO MAKE REAL HEADWAY, WE
HAVE TO BE PARTNERS ACROSS THAT
LARGE A SPACE.
I THINK THERE ARE MANY DIFFERENT
WAYS TO SPLIT CANCERS.
I LOVE IT WHEN WE CAN BRING
THOSE BACK TOGETHER WITH THINGS
LIKE IF A COMMON MUTATION CAUSES
A COMMON RESPONSE TO A DRUG, WE
KNOW THAT THAT'S NOT ALWAYS
TRUE, BUT THERE ARE CASES WHERE
THAT'S WHERE WE CAN BRING THEM
BACK TOGETHER, AND THERE ARE
CASES WHERE WE CAN WIDDLE DOWN
TO A RARE TYPE OR RARE SUBTYPE
AND THEN BE ABLE TO MAKE THAT
HEADWAY, BECAUSE NOW WE KNOW,
A-HA, THE DRIVER, AND TO PROVE
THAT, WE HAVE TO BRING ALL THESE
PEOPLE TOGETHER.
SO I THINK A LOT OF WHAT WILL
WE'RE DOING IS LEANING ON THE
PEDIATRIC EXPERIENCE AND TRYING
TO DO THAT IN THE ADULT SPACE AS
WELL.
>> LEE, DID YOU HAVE SOMETHING
TO ADD?
>> I BELIEVE THE FDA ALLOWS
PEOPLE AS YOUNG AT AS AGE 12 TO
PARTICIPATE IN ADULT CLINICAL
TRIALS BUT I'M ON THE EARLY
PHASE NCI IRB, AND I VERY SELDOM
SEE ANYONE UNDER THE AGE OF 18
ALLOWED TO PARTICIPATE.
SO MAYBE WE HAVE AN OPPORTUNITY
THERE TO AT LEAST LOWER THAT AGE
SO THAT PEOPLE BETWEEN 12 AND 18
MIGHT BE ABLE TO AT LEAST GET
INVOLVED IN THESE CLINICAL
STUDIES.
IT WOULD BE HELPFUL FOR THEM.
>> THAT'S A CONVERSATION THAT
EMA HAS ALREADY MADE THAT PART
OF THE EUROPEAN -- IT WAS
THROUGH -- TRIALS AND IT'S BASED
ON BODY MASS AND I THINK THAT
FDA HAS A GUIDANCE ABOUT IT BUT
IT HASN'T BEEN A SPECIFIC CHANGE
IN MANDATING, SO I THINK IT'S
ALLOWED BUT NOT NECESSARILY
REQUIRED THAT ADOLESCENTS --
THAT THE BMI STANDARDS SHOULD BE
ENROLLED.
>> THESE ARE NCI-FUNDED STUDIES,
SO I PRESUME NCI COULD MAKE A
DIFFERENCE THERE, IF THAT MADE
SENSE, AND WHERE IT MAKES SENSE.
>> LEE, AND WHAT I'M SEEING AT
MY INSTITUTION IS THAT THE IRB
ALLOWS PEOPLE UNDER 18 UNDER
CERTAIN CONDITIONS AFTER THE
FIRST FEW ADULTS WHO ARE
ENROLLED AND THERE WERE NO
SAFETY SIGNALS, SO THERE'S JUST
A WAITING PERIOD BEFORE THEY
ALLOW THE PEOPLE UNDER 18 TO
PARTICIPATE.
>> I SEE IN THE ONES THAT -- I
REVIEW THEM, THEY'RE ALMOST ALL
EXCLUDED, UNDER 18 EXCLUDED,
PRISONERS EXCLUDED, PREGNANT
WOMEN EXCLUDED, MOST OF THOSE
MAKE SENSE, BUT FOR PEOPLE
BETWEEN 12 AND 18 IF POSSIBLE --
>> I THINK THE IRBs HAVE TO
BALL ABC THE PROTECTIONS
UNDER -- THERE'S CRITERIA THAT'S
EMBEDDED IN THE NEW WAY OF
THINKING AND HOW TO BALANCE ALL
THAT.
AND I THINK, YOU KNOW, A LOT OF
PEOPLE ARE JUST TRYING TO STAY
OUT OF TROUBLE.
BULL I COMPLETELYBUT I COMPLETEU
THAT THERE ARE WAYS TO MAKE IT
HAPPEN AND MAYBE THAT'S A
SUGGESTION TO ADD, IS OH MAYBE
DB AS LONG AS THERE ARE NO
SAFETY SIGNALS IN THE FIRST FIVE
PARTICIPANTS OR WHATEVER THE
NUMBER IS, THEN TO OPEN UP TO
PEDIATRICS MAY BE A STRATEGY TO
CONSIDER.
>> RIGHT, AND YOU HAVE TO HAVE
GUARDIAN CONSENT, WHAT IF THE
PARENTS ARE DIVORCED, WHO DO YOU
GET TO CONSENT?
IT MAKES IT MUCH MORE
COMPLICATED, BUT IF IT WOULD BE
HELPFUL FOR PEOPLE 12 TO 18, WE
SHOULD CONSIDER HOW TO MAKE IT
WORK BETTER FOR THEM.
>> YEAH.
I'M HAPPY TO LOOK INTO WHERE
THERE MIGHT BE OPTIONS FOR
THINGS THAT OFFER SOME LEVEL OF
FLEXIBILITY SOMETIMES.
THAT'S A GREAT COMMENT.
ONE OF THE DISCUSSION POINTS
TODAY WAS ALSO ABOUT HOW WE
MANAGE LEVELS OF RISK TOLERANCE,
AND PARTICULARLY FOR A BOARD
THAT'S COMPOSED OF ADVOCATES IS
HOW DO WE DECIDE WHAT IS AN
ACCEPTABLE LEVEL OF RISK.
AND THERE MAY BE CIRCUMSTANCES
WHERE THE RISK MAY BE WARRANTED.
>> WELL, THANK YOU SO MUCH,
DR. RATHMELL.
WE REALLY APPRECIATE THE
OPPORTUNITY TO HAVE THIS REALLY
DEEP ROBUST DISCUSSION WITH YOU
AND WE CAN TALK TO YOU ABOUT
ANYTHING.
IT'S JUST, YOU KNOW, EXTREMELY
HELPFUL TO US.
BUT WE DO HAVE A LITTLE BIT OF
BOARD BUSINESS THAT WE HAVE TO
TAKE CARE OF BEFORE WE SIGN OFF.
SO LET'S SEE HERE.
SO FIRST OF ALL, WE HAVE TO
APPROVE THE SUMMARY FOR THE LAST
BOARD MEETING THAT WE HAD IN
MARCH.
THE SUMMARY WAS INCLUDED IN THE
BOARD MATERIALS.
SO I AM LOOKING FOR A MOTION TO
APPROVE THE BOARD MINUTES.
>> I HAD ONE MINOR CHANGE THAT I
TOLD VINCENT ABOUT BUT OTHERWISE
I MOVE TO APPROVE WITH THAT ONE
MINOR CHANGE.
REFERRED TO AS MR. LEE RATHER
THAN MR. JONES.
>> SO WE HAVE A MOTION TO
APPROVE AS AMENDED.
AND DO I HAVE A SECOND?
>> I SECOND.
>> THANK YOU.
THANK YOU.
OKAY.
SO THIS HAS BEEN MOVED AND
SECONDED AND WE HAVE A VOTE, ALL
IN FAVOR, SAY YES OR RAISE YOUR
HAND.
>> AYE.
>> AYE, OKAY.
ALL OPPOSED?
OKAY.
HEARING NONE OPPOSED, THE BOARD
MINUTES ARE APPROVED.
AND OUR NEXT MEETING WILL BE ON
SEPTEMBER 18TH IN PERSON.
WE LOOK FORWARD TO CONTINUING
THE DISCUSSION WITH YOU,
DR. RATHMELL, AS WELL AS
LEARNING SOME NEW THINGS.
AND THIS HAS BEEN JUST AN
AMAZING MEETING.
AMY, DO YOU HAVE ANYTHING TO ADD
AT THIS POINT?
>> NO, NO, THANK YOU SO MUCH,
ANNIE, FOR LEADING MEETING AND
THANK YOU ALL OF YOU FOR
SPENDING ALL YOUR AFTERNOON WITH
US.
AND WE ARE OBVIOUSLY VERY MUCH
LOOKING FORWARD TO SEEING
EVERYONE IN PERSON IN THE FALL.
AND THANK YOU TO THE ADVOCACY
OFFICE STAFF.
REALLY DOES ALL THE BEHIND THE
SCENES --
>> BUT THIS IS THE LAST DAY FOR
SOME PEOPLE?
WE HAVE TO SAY GOODBYE TO THEM
AND THANK THEM.
>> WE DID.
WE WERE DOING THAT IN THE
BEGINNING.
I WAS JUST TEXTING WITH SOME OF
THEM, YOU KNOW, YOU MIGHT MOVE
OFF OF NCRA BUT YOU NEVER REALLY
MOVE OFF OF NCI AND WE WILL
OBVIOUSLY KEEP IN TOUCH AND LOOK
FORWARD TO PLUGGING YOU ALL INTO
PLACES.
NCI IS A BIG PLACE AND
COLLECTIVE PATIENT PERSPECTIVE
IS IMPORTANT TO EVERY NOOK AND
CRANNY OF THAT SPACE, SO
PLUGGING PEOPLE INTO OTHER
PLACES.
THANK YOU, VICKIE.
>> THIS ISN'T GOODBYE, PEOPLE.
I HATE GOODBYES, BUT WE WILL
CONTINUE TO BE COLLEAGUES AND
OUR PATHS WILL DEFINITELY CROSS.
AND I THANK YOU SO MUCH FOR
MAKING MY JOB EASY.
IT'S BEEN REALLY WONDERFUL.
AND THANK YOU, DR. RATHMELL, FOR
SHOWING US AROUND THE WAR OFFICE
THERE.
THAT WAS REALLY A HIGHLIGHT.
>> ABSOLUTELY.
IT'S BEEN A PLEASURE TO SIT IN
THIS CRAZY FANCY ROOM.
>> THANK YOU ALL, AND WE'LL SEE
YOU IN SEPTEMBER.
>> THANKS, EVERYBODY.
>> BYE.