GOOD MORNING, EVERYONE.
THANK YOU FOR JOINING US FOR THE
THIRD MEETING OF NATIONAL
COMMISSION ON LYMPHATIC
DISEASES.
THIS IS A VIRTUAL MEETING AND IT
IS THE FIRST MEETING THAT NCLD
IS MEETING WITH STAKEHOLDERS AND
ALL PARTICIPANTS ARE JOINING US
THROUGH THE ZOOM ENVIRONMENT.
WE ALSO WELCOME EVERYONE
LISTENING THROUGH THE NIH
VIDEOCAST.
I'M SELEN CATANIA, A PROGRAM
OFFICER IN NATIONAL HEART, LUNG,
BLOOD INSTITUTE IN THE DIVISION
OF CARDIOVASCULAR SCIENCES.
I'M THE EXECUTIVE SECRETARY OF
THIS COMMISSION, SERVING AS A
LIAISON BETWEEN NCLD AND NHLBI
LEADERSHIP.
SO I'M REPRESENTING HERE A
LARGE -- CONSIDERABLY LARGE
NHLBI SUPPORT STRUCTURE FOR THE
COMMISSION.
I'M GOING TO MAKE A FEW
ADMINISTRATIVE ANNOUNCEMENTS AND
SOME HOUSEKEEPING REMINDERS
BEFORE WE GET STARTED.
FIRST, I WANT TO WELCOME ALL OUR
PUBLIC VISITORS, AS WELL AS THE
STAFF TO THE OPEN SESSION AND WE
ARE LOOKING FORWARD TO YOUR
FEEDBACK.
THE LISTENERS ON THE VIDEOCAST
ENVIRONMENT CAN USE THE "SEND
FEEDBACK" BUTTON RIGHT UNDER THE
WEBCAST SCREEN, AND ALL YOUR
QUESTIONS WILL BE RECORDED AND
TAKEN INTO CONSIDERATION BY THE
COMMISSION AFTER THE MEETING
ENDS.
TODAY'S MEETING IS BEING
WEBCASTED AND RECORDED.
THE VIDEO WILL BE ARCHIVED AND
WILL BE AVAILABLE FOR THE PUBLIC
AND OUR NIH COLLEAGUES FOR AN
INDEFINITE AMOUNT OF TIME.
A BRIEF OVERVIEW OF TODAY'S
AGENDA IS, WE WILL HAVE TWO
PANEL SESSIONS HOSTING
SEPARATELY A GROUP OF
PROFESSIONAL SOCIETIES IN THE
MORNING AND A GROUP OF PATIENT
AND PROFESSIONAL EDUCATORS IN
THE AFTERNOON.
AS THE COMMISSION CONTINUES
THEIR JOURNEY TO BETTER
UNDERSTAND AND ADDRESS LYMPHATIC
DISEASES, TODAY'S PANELS ARE
ESSENTIAL FOR PART OF THEIR
EFFORTS.
WE THANK ALL OUR PANELISTS TO
SUPPORT THIS EFFORT.
DURING LUNCH BREAK AT 11:50 A.M.
EASTERN TIME, WE WILL REQUEST
PANEL A PARTICIPANTS TO EXIT THE
ZOOM MEETING AND JOIN THE
VIDEOCAST LINK THAT WAS SENT IN
THEIR CALENDAR INVITE TO FOLLOW
THE AFTERNOON SESSIONS.
PANEL B WILL BE JOINING AT THIS
TIME FOR THE AFTERNOON SESSION
AT 12:30 P.M.
THE NCLD CO-CHAIR, DR. STANLEY
ROCKSON, WILL BRIEFLY WELCOME
THE PANELS TO INTRODUCE THE
NCLD'S CHARGE AND PROGRESS OF
THE COMMISSION.
EACH SESSION WILL HAVE TWO
PARTS: THE INTRODUCTION AND THE
OPEN PANEL DISCUSSION.
WE REQUEST EVERYONE TO TURN
THEIR CAMERAS ON WHEN SPEAKING
AND USE HAND-RAISE FUNCTION
DURING DISCUSSION.
I'LL BE CALLING YOU TO ENTER IN
TO THE DISCUSSION.
ALL ZOOM CHAT COMMUNICATION WILL
BE SAVED FOR THE RECORD OF THE
COMMISSION.
BEFORE PASSING THE MIC, I WANT
TO MENTION THAT MS. STEPHANIE
DREYER, THE CO-CHAIR OF THE NCLD
WHO IS IN ATTENDANCE, WILL NOT
BE CO-LEADING THE MEETING
ACTIVELY, DUE TO HER
HEALTH-RELATED PROBLEMS.
WITH THAT, IT IS MY GREAT
PLEASURE TO INTRODUCE
DR. STANLEY ROCKSON, THE
CO-CHAIR OF NCLD, FOR HIS
WELCOME REMARKS.
>> SORRY, I'M UNABLE TO START
THE VIDEO BASED ON THE HOST?
OKAY, THERE WE GO.
GOOD MORNING, LADIES AND
GENTLEMEN.
THANK YOU SO MUCH FOR ATTENDING
TODAY'S SESSION.
THANK YOU, SELEN, FOR YOUR
INTRODUCTION.
I AM REPRESENTING MYSELF AND
MYCO-CHAIR, STEPHANIE DREYER,
WHO ACTIVELY PARTICIPATED IN THE
CREATION OF TODAY'S SESSION AND
INVAL INVALUABLE TO WHAT WE'RE G
TODAY.
I WANT TO SAY AS AN INTRODUCTORY
COMMENT THAT THERE IS A WEBPAGE
DEVOTED TO THIS NATIONAL
COMMISSION, SO IF YOU WOULD LIKE
TO REVIEW WHAT THE COMMISSION
REPRESENTS AND WHO ITS MEMBERS
ARE, YOU CAN CONSULT THE URL
THAT IS POSTED AT THE BOTTOM OF
THIS SLIDE.
IF WE CAN MOVE ON TO THE NEXT
SLIDE, PLEASE.
JUST TO BRIEFLY REMIND EVERYBODY
ABOUT THE CHARGE OF THE NATIONAL
COMMISSION.
OF COURSE OUR COMMISSION MEMBERS
ALREADY KNOW THIS, BUT THIS IS
FOR THE PURPOSE OF OUR INVITED
PANELISTS AS WELL AS THE PUBLIC
ATTENDEES THROUGH THE VIDEOCAST.
WE HAVE BEEN ASKED TO
PARTICIPATE IN THIS NATIONAL
COMMISSION ON LYMPHATIC DISEASE
THAT IS INTENDED TO BE
TRANSPARENT, INCLUSIVE AND AN
ACCESSIBLE PUBLIC FORUM.
WE'RE TRYING TO ADDRESS THE
CRITICAL CHALLENGES AND
SCIENTIFIC AND CLINICAL
OPPORTUNITIES THAT SURROUND ALL
OF THE LYMPHATIC DISEASES.
WE ARE GOING TO ACCOMPLISH IN
PART WHAT IS THE SECOND BULLET
POINT HERE TODAY, WHICH IS TO
GATHER INPUT FROM A WIDE AND
DIVERSE SPECTRUM OF STAKEHOLDERS
TO IDENTIFY REMAINING GAPS AND
CHALLENGES.
AND YOU AS PANELISTS WHO ARE
INVITED THIS MORNING WILL HELP
US TO ACCOMPLISH THIS GOAL SO
THAT ULTIMATELY, BULLET POINT
NUMBER THREE, WE CAN PROVIDE
ACTIONABLE PROGRESS UPDATES AND
A FINAL REPORT TO THE NATIONAL
HEART, LUNG AND BLOOD ADVISORY
COUNCIL TO REFLECT THESE
PERSPECTIVES AND TO ALLOW US TO
BEGIN TO COME TO SOME MEANINGFUL
SOLUTIONS FOR THE PROBLEMS THAT
ARE IN FRONT OF US.
JUST AS A WORD OF INTRODUCTION,
OUR COMMISSION HAS BEEN
SUBDIVIDED INTO SIX COMMITTEES
THAT ARE ADDRESSING PARTICULAR
ASPECTS OF THE PROBLEM IN FRONT
OF US, SO WE HAVE A COMMITTEE
FOR SCIENTIFIC ADVANCEMENT, ONE
FOR EDUCATIONAL IMPERATIVES, ONE
FOR MEASURABLE RESULTS, PATIENT
TOOLS, THIRD PARTY COVERAGE, AND
COMMUNITY GROWTH.
AND YOU CAN SEE THE COMPOSITION
OF EACH OF THESE SUBCOMMITTEES
LISTED ON THE SLIDE, AND ONCE
AGAIN, IF YOU WANT TO CONSULT
THE NCLD WEBPAGE YOU CAN SEE IN
MORE DETAIL WHO THESE
INDIVIDUALS ARE AND WHAT THEY
REPRESENT.
AT THIS POINT, I'M GOING TO
INTRODUCE AND WELCOME OUR VERY
DISTINGUISHED INVITED PANEL WHO
WILL PROVIDE US WITH SOME
INITIAL INFORMATION AND THEN BE
INVITED TO INTERACT IN, WE HOPE,
A VERY CONSTRUCTIVE AND LIVELY
FASHION WITH THE COMMISSION.
I WILL BE INTRODUCING EACH OF
YOU BY NAME AND ORGANIZATION.
AT THAT POINT, I ASK YOU PLEASE
TO INTRODUCE YOURSELF AND YOUR
BACKGROUND, AND IF RELEVANT,
YOUR RELATIONSHIP TO THE LYM
LYMPHATIC ENVIRONMENT AND TO
SPEAK A LITTLE BIT ABOUT THE
ORGANIZATION THAT YOU REPRESENT
AND WHAT ITS POTENTIAL ROLE MAY
BE IN HELPING THIS COMMISSION TO
ACCOMPLISH ITS GOAL.
EACH SOCIETY OR FOUNDATION WILL
HAVE SEVEN MINUTES IN WHICH TO
MAKE THIS PARTICULAR
INTRODUCTION, AND WE WANT TO
LEAVE PLENTY OF TIME FOR THE
COMMISSION TO INTERACT WITH YOU
BASED UPON WHAT YOU HAVE TO SAY
INDIVIDUALLY AND COLLECTIVELY AS
A PANEL.
SO I'LL START WITH DR. MARK
CREAGER WHO'S REPRESENTING THE
AMERICAN HEART ASSOCIATION.
>> THANK YOU VERY MUCH, STAN,
AND HELLO, EVERYBODY.
>> THERE YOU ARE.
THAT'S GOOD.
WE MAY HAVE A BIT OF A
CONNECTION ISSUE.
>> CAN YOU HEAR ME?
>> YES.
YES, CAN HEAR YOU NOW.
>> MY INTERNET CONNECTION IS
UNSTABLE, SO I'LL DO MY VERY
BEST.
>> THANK YOU.
>> AGAIN, GOOD MORNING,
EVERYONE.
I'M MARK CREAGER.
FOR THIS PANEL, I AM
REPRESENTING THE AMERICAN HEART
ASSOCIATION.
I'M A CARDIOVASCULAR PHYSICIAN.
MY RESEARCH INTERESTS AND MY
CLINICAL INTERESTS -- IN ITS
BROADEST CONTEXT.
SO OBVIOUSLY LYMPHATIC DISEASES
ARE INCLUDED -- TRAINED AT
BOSTON MEDICAL CENTER, MY MENTOR
WAS JAY KAUFMAN, MOVED ON TO
BRIGHAM AND WOMEN'S HOSPITAL --
FOR 31 YEARS.
APPROXIMATELY EIGHT YEARS AGO --
KNOWN AS DARTMOUTH HEALTH AND
SCHOOL OF MEDICINE AT DARTMOUTH
AS THE -- AND ABOUT ONE YEAR
AGO, I STEPPED DOWN FROM THAT
POSITION BUT MAINTAIN -- A LARGE
RESEARCH GRANT SPOP SOARED BY
SPONSORED BY THENIH ON THEIR --L
HEALTHCARE DELIVERY SCIENCE, AND
I MENTOR OUR -- MEDICINE CLINIC.
MY BACKGROUND IN VASCULAR
MEDICINE HAS REALLY BEEN QUITE
EXTENSIVE.
-- MEDICINE.
I WAS THE PRESIDENT OF THE
VASCULAR DISEASE FOUNDATION --
EDITED A TEXTBOOK CALLED
VASCULAR MEDICINE, AND STAN --
>> DR. CREAGER, WE JUST REMOVED
YOUR CAMERA TO RESERVE BANDWIDTH
SO YOU CAN HAVE A BETTER
CONNECTION.
>> STOP THE CAMERA?
>> NO, WE ALREADY DID IT.
>> CAN YOU HEAR ME BETTER?
>> YES, WE CAN.
>> OH, OKAY.
THANK YOU.
>> NO PROBLEM.
>> I ASSUME I DON'T HAVE TO GO
BACK TO --
>> NO, YOU'RE ALL SET.
>> OKAY, THANK YOU.
ALL RIGHT.
SO ANYWAY, I'VE HAD LEADERSHIP
POSITIONS IN -- E EDITED TEXTBOK
VASCULAR MEDICINE AND I'M NOW
THE EDITOR -- MEDICINE, WHICH I
EDITED FOR ABOUT 18 YEARS.
ONE OF MY MAJOR -- MY PLACE OF
EMPLOYMENT HAS EVOLVED HERE FOR
THE AMERICAN HEART ASSOCIATION.
-ORGANIZATION PARTICIPATING IN
MANY OF ITS ASPECTS, BUT IN
2015, -- AMERICAN HEART
ASSOCIATION AND I'VE REMAINED A
VERY ENGAGED AND ACTIVE
VOLUNTEER SINCE -- AMERICAN
HEART ASSOCIATION, BUT LET ME
JUST SUMMARIZE SOME OF -- A VERY
LARGE REALLY PATIENT-ORIENTED
ORGANIZATION, BUT IT'S -- ACROSS
THE SPECTRUM FROM CLINICIANS TO
SCIENTISTS AND LAY VOLUNTEERS AS
WELL.
IT HAS -- ITS MISSION CERTAINLY
IS IMPORTANT SCIENCE ASPECT, IT
FUNDS THE RESEARCH -- MORE
CARDIOVASCULAR RESEARCH THAN ANY
OTHER ORGANIZATION.
INFORMING THE PUBLIC AND HELPING
THE PUBLIC IN MANY AREAS OF
CARDIOVASCULAR DISEASE --
PROGRAM AT CPR BUT IT DOES SO
MUCH MORE THAN THAT IN INFORMING
THE PUBLIC ABOUT THE -- IT'S
ALSO VERY MUCH AT THE SEAT FOR A
NUMBER OF ADVOCACY --
ORGANIZATION, IT'S STAFFED BY
THOUSANDS OF EMPLOYEES, BUT TENS
OF -- ACTIVITIES OF THE AMERICAN
HEART ASSOCIATION.
WHEN YOU HEAR THE WORD "HEART,"
PARTICULAR ORGAN, BUT THAT'S
REALLY NOT THE CASE.
IT'S REALLY AN ORGANIZATION THAT
LOOKS AT HEALTH IN GENERAL BUT
IF WE WANT TO -- THE HEART,
WE'RE TALKING ABOUT BRAIN HEALTH
AND IN CONTEXT -- NOW I WILL
READILY ADMIT, LYMPHATIC
DISEASES HAS NOT BEEN AT THE
FOREFRONT OF THE -- I THINK FOR
THAT REASON THAT MY JOINING THE
PANEL TODAY CREATES AN
OPPORTUNITY NOT ONLY FOR ME T
TO -- AMERICAN HEART ASSOCIATION
CAN BECOME MUCH MORE ENGAGED IN
SUPPORTING ACTIVITIES --
RESEARCH FRONT -- FUNDING
SCIENCE OR WHETHER THAT HAS TO
DO WITH INFORMING -- AS WELL AS
ADVOCACY EFFORTS, I THINK WE'RE
PREPARED TO DO THAT AND I'M
LOOKING FORWARD TO THE REST OF
THE --
>> OKAY, THANK YOU, MARK.
THANK YOU VERY MUCH.
IT SOUNDS LIKE WE HAVE WONDERFUL
OPPORTUNITIES TO INTERACT WITH
YOU DURING THE INTERACTIVE
SESSION.
I NEXT WILL INTRODUCE DR. ROBERT
SMITH, WHO IS HERE REPRESENTING
THE AMERICAN CANCER SOCIETY.
>> THANK YOU, AND GOOD MORNING,
STAN.
I AM A CANCER EPIDEMIOLOGIST,
AND SENIOR VICE PRESIDENT FOR
CANCER SCREENING AND DIRECTOR OF
THE AMERICAN CANCER SOCIETY
CENTER FOR EARLY CANCER
DETECTION SCIENCE.
MY CAREER STARTED IN THE SCHOOL
OF MEDICINE AT BOSTON
UNIVERSITY, AND THEN WENT TO THE
CENTERS FOR DISEASE CONTROL AND
I'VE BEEN AT THE AMERICAN CANCER
SOCIETY FOR 32 YEARS.
I'M MOSTLY FOCUSED ON EARLY
CANCER DETECTION, DEVELOPMENT OF
CANCER SCREENING GUIDELINES, BUT
I'M ALSO PARTICULARLY INTERESTED
IN ORPHAN PROBLEMS IN CANCER
CONTROL.
IN 1997, TH THE AMERICAN CANCER
SOCIETY HAD THE GOOD FORTUNE TO
ESTABLISH PARTNERSHIP WITH THE
LONGABERGER COMPANY, A COMPANY
THAT MADE BASICALLY HOME
PRODUCTS, MAINLY HARDWOOD VENEER
BASKETS, THE HORIZON OF HOPE
CAMPAIGN WAS TO TARGET RESEARCH
AND EDUCATION IN BREAST CANCER.
$2 FROM EVERY SALE OF THE BASKET
WOULD COME TO THE AMERICAN
CANCER SOCIETY AND AMONG THE
MANY CONTRIBUTIONS AND IDEAS
THAT THE COMPANY HAD FOR HOW
THEY COULD MAKE A DIFFERENCE IN
BREAST CANCER, DR. GENE PETRIC,
THE LATE DR -- THE MORE I LEARND
ABOUT LYMPHEDEMA, EARLY
DETECTION AND TREATMENT WAS, THE
MORE I WAS PERSUADED THIS WAS AN
IMPORTANT COMMITMENT FOR THE
AMERICAN CASS 16 SEWER SITE.
OUR FIRST INITIATIVE WAS AN
INTERNATIONAL WORKSHOP HELD IN
NEW YORK CITY IN 1998, TO
IDENTIFY THE HIGHEST PRIORITY
STRATEGIES FOR LYMPHEDEMA
EDUCATION TREATMENT AND
RESEARCH, WHEN I FIRST MET
DR. ROCKSON.
OF PARTICULAR IMPORTANCE, ALL
THE INTERNATIONAL SCHOOLS OF
LYMPHEDEMA THERAPY WERE PRESENT,
THERE WERE APPROACHES THAT WERE
PARTICULARLY THORNY.
THE PRESENTATIONS AND
RECOMMENDATIONS WERE PUBLISHED
IN THE SUPPLEMENT OF CANCER AND
WERE OPEN ACCESS, BUT THE
MEETING HAS BEEN REGARDED AS A
MILESTONE IN RAISING AWARENESS
ABOUT LYMPHEDEMA AND GAINING
SOME MOMENTUM PARTICULARLY IN
THE AREA OF BREAST CANCER.
ONE OF THE WORK GROUP
RECOMMENDATIONS WAS THE
ESTABLISHMENT OF A CERTIFICATION
PROGRAM SO ONE WOULD HAVE A
TRUSTED INDICATOR THAT THEIR
THERAPIST HAD RECEIVED SPECIAL
TRAINING IN LYMPHEDEMA AND PAS
PASSED -- THEY'RE STILL
CERTIFYING THERAPISTS TODAY.
IN 2012, THE ACS SUPPORTED A
WORKSHOP PROPOSING A PROSPECTIVE
SURVEILLANCE MODEL FOR
REHABILITATION FOR WOMEN WITH
BREAST CANCER, WHICH INCLUDED
NUMEROUS PHYSICAL IMPAIRMENTS IN
ADDITION TO LYMPHEDEMA.
THE WORKSHOP EMPHASIZED THE
SERIOUS ENDURING CLINICAL
FAILURE TO IDENTIFY THESE
IMPAIRMENTS WHEN THEY FIRST
MATERIALIZE SO THEY ARE COMMONLY
UNRECOGNIZED, UNTREATED AND
PROGRESS WITHOUT INTERVENTIONS
TO LEVELS THAT NEGATIVELY IMPACT
FUNCTION.
MANY CLIPPINGS BU CLINICS BUT NY
ENOUGH HAVE ADOPTED THIS MODEL.
RESEARCH AND EDUCATION IN
LYMPHEDEMA MA HAVE ADVANCED OVER
THE LAST 25 YEARS, THE ACS, THE
LYMPHOLOGY ASSOCIATION OF NORTH
AMERICA, AND WASHINGTON
UNIVERSITY SCHOOL OF MEDICINE
HOSTED A SUMMIT IN ST. LOUIS,
MISSOURI.
THE LYMPHEDEMA -- PHYSICIANS,
THERAPISTS, RESEARCHERS AND
OTHER THOUGHT LEADERS IN THE
FIELD WITH THE AIM TO ESTABLISH
CURRENT KNOWLEDGE AND PRODUCE
CONSENSUS DOCUMENTS TO ESTABLISH
BASELINE FOR FUTURE PROGRESS IN
THE TOPIC.
THOSE MATERIALS WILL ALSO BE
GATHERED AND IN A SUPPLEMENT
THAT WILL BE OPEN ACCESS AND
PUBLISHED IN ANOTHER JOURNAL.
SECONDARY CANCER TREATMENT
RELATED LYMPHEDEMA REMAINS A
SERIOUS PROBLEM TODAY.
THE PREVALENCE AND INCIDENCE IS
NOT FULLY KNOWN AS WAS
ESTABLISHED IN THESE COMPANY
DOCUMENTS, WHICH IS DUE IN PART
TO THE HETEROGENEITY OF THE
CANCER TYPES, CANCER LOCATIONS,
THE ABSENCE OF SURVEILLANCE
SYSTEMS, AND HOWEVER ESTIMATES
SUGGEST THAT THE INCIDENCE OF
TREATMENT-RELATED LYMPHEDEMA MAY
RANGE BETWEEN 5 -- RANGING FROM
VERY MILD TO QUITE SEVERE AND
DEBILITATING AND ADVERSELY
IMPABTING PHYSICAL FUNCTION,
PSYCHOSOCIAL HEALTH AND
HEALTH-RELATED QUALITY OF LIFE.
LYMPHEDEMA MAY OCCUR SOON OR
VERY LONG AFTER TREATMENT AND
TOO OFTEN WE HEAR CLINICIANS
TELL US THAT LI LYMPHEDEMA IS R,
SOMETHING IN THE PAST, AND
THEY'RE NO LONGER TAKING CARE OF
THESE PATIENTS WHEN SYMPTOMS
FIRST MANIFEST.
AS THE BACKGROUND DOCUMENTS
HIGHLIGHTED, WE HAVE VERY
LIMITED ABILITY TO ESTIMATE THE
INCIDENCE AND PREVALENCE OF
TREATMENT RELATED LYMPHEDEMA BUT
THE NUMBERS ARE QUITE LARGE AND
THE SIZE OF THE POPULATION AT
RISK IS MANY TIMES LARGER.
-- COMPARED TO LOWER EXTREMITY
GENITAL GYNECOLOGICAL AND HEAD
AND NECK LYMPHEDEMA AND IN THE
UNITED STATES THERE ARE OVER
3.8 MILLION BREAST CANCER
SURVIVORS OF WHOM 10 TO 50% ARE
AT RISK FOR MANIFESTING BREAST
CANCER RELATED LYMPHEDEMA.
ALTHOUGH MUCH HAS BEEN LEARNED,
THERE IS MUCH MORE WE NEED TO
KNOW AND MANY OF THE QUESTIONS
THAT WERE WITH US AT THE TURN OF
CENTURY ARE STILL WITH US TODAY.
AND THAT MEANS THAT MILLIONS OF
PATIENTS WITH LYMPHEDEMA
SECONDARY TO CANCER TREATMENT IS
STILL A MAJOR PROBLEM.
RISK COMMUNICATION IS POOR,
THERE IS COMMONLY NO SYSTEM FOR
POST TREATMENT SURVEILLANCE
WHICH WE KNOW WILL HAVE TO LAST
FOR MANY YEARS AFTER TREATMENT,
PROVIDER AWARENESS IS LOW, AND
TREATMENT QUALITY IS HIGHLY
VARIABLE.
I WANT TO THANK THE LONGABERGER
COMPANY TO THEIR COMMITMENT TO
THIS AND JUST AS AN ANTIDOTE,
THE COMPANY WOULD HOST A
LUNCHEON EVERY YEAR FOR BREAST
CANCER SURVIVORS WHO ARE FRIENDS
OF THEIR SALES ASSOCIATES.
IT WAS A LOVE LOW DAY, KEEP IN
MIND ALL THE WOMEN IN THE ROOM
ARE BREAST CANCER SURVIVORS AND
THERE WOULD BE SORT OF A
RECEIVING LINE AFTERWARDS WITH A
HANDFUL OF SPEAKERS, MYSELF AND
SOME OTHERS FROM THE AMERICAN
CANCER SOCIETY WOULD HAVE AN
OPPORTUNITY --
>> YOU HAVE ONE MINUTE
REMAINING.
>> I'M GOOD, THOUGH.
WILL HAVE AN OPPORTUNITY TO SAY
HELLO.
MANY OF THESE WOMEN HAD VERY
SWOLLEN ARMS.
BUT THEY WERE QUITE EXCITED TO
FINALLY HEAR SOMEBODY TALK ABOUT
THEIR PROBLEM, BECAUSE UP TO
DATE, THEY HAD HAD NO CONFIDENCE
AND NO HELP IN DEALING WITH THE
CONDITION THEY'D BEEN LIVING
WITH FOR MANY YEARS.
SO I'D LIKE TO CONGRATULATE THE
NATIONAL COMMISSION ON LYMPHATIC
DISEASES FOR ORGANIZING THIS
WORKSHOP.
IT'S MY HOPE THAT MORE MEETINGS
LIKE THIS WILL OCCUR WITH
GREATER FREQUENCY AND WE WILL
BUILD ON RESEARCH PROJECTS MORE
RAPIDLY AND MAKE REAL INRHODES
INTO REDUCING THE DAILY
SUFFERING EXPERIENCE BY MILLIONS
OF INDIVIDUALS WHO HAVE BEEN
SUCCESSFULLY TREATED FOR THEIR
CANCER BUT LEFT WITH A
DEBILITATING TREATMENT
CONDITION.
THE ACS IS COMMITTED TO
COLLABORATION IN THIS AREA.
THANK YOU VERY MUCH AND I LOOK
FORWARD TO THE REST OF THE DAY.
>> THANK YOU, DR. SMITH.
I KNOW OUR PANEL IS GOING TO BE
ANXIOUS TO INTERACT WITH YOU TO
DETERMINE HOW WE CAN PARTNER
TOGETHER TO COME UP WITH MORE
BROAD RANGING SOLUTIONS.
MY NEXT INTRODUCTION IS OF TWO
INVITED PANELISTS WHO
COLLECTIVELY REPRESENT NAVBO,
NORTH AMERICAN VASCULAR BIOLOGY
ORGANIZATION, AND I WILL LEAVE
TO THE TWO OF YOU TO DECIDE HOW
TO DIVIDE UP YOUR TIME ALLOTTED.
I'M PLEASED TO INTRODUCE DR. JAN
KITAJEWSKI AND DR. CARRIE
SHAWBER REPRESENTING NAVBO.
>> THANKS, STAN.
I'LL START OFF AND JAN WILL JOIN
AFTERWARDS AND HE CAN INTRODUCE
HIS BACKGROUND.
I'M A LYMPHATIC VASCULAR
BIOLOGIST.
I STUDY USING MOUSE MODELS,
STUDY BOTH LYMPHATIC DEVELOPMENT
AND THE ROLE OF GENES IN
REGULATING LYMPHATIC HOMEOSTASIS
AND IT RELATES TO THE DISEASES
AND I ALSO HAVE A RESEARCH
PROGRAM LOOKING INTO THE
GENETICS OF CONGENITAL LYMPHATIC
ANOMALIES AND THE TREATMENT
THERE.
I WANT TO THANK THE ORGANIZERS
FOR INVITING BOTH JAN AND MYSELF
TO REPRESENT NAVBO TODAY.
JAN SERVED ON NAVBO COUNCIL AND
WAS PRESIDENT OF NAVBO FROM 2016
TO 2017.
AND I AM CURRENTLY THE CHAIRMAN
OF THE NAVBO EDUCATION
COMMITTEE.
AND WE BOTH, AS I WAS SAYING, WE
BOTH HAVE DISCOVERY AND
TRANSLATIONAL RESEARCH PROGRAMS
IN LYMPHATIC BIOLOGY.
NAVBO IS AN ORGANIZATION THAT
WAS ESTABLISHED 29 YEARS AGO
THAT CONSISTS OF VASCULAR
BIOLOGISTS WITH DIVERSE
BACKGROUNDS, AND IT INCLUDES
FACULTY, POSTDOCTORAL
RESEARCHERS AND GRADUATE
STUDENTS.
A MAJOR GOAL OF NAVBO IS TO
MENTOR THE FUTURE GENERATION OF
SCIENTISTS.
CURRENTLY, 14% OF NAVBO MEMBERS
RECOGNIZE IT AS A RESEARCH
INTEREST.
-- THIS ACTUALLY STATES HOW
INTERESTED US AS A COMMUNITY OF
RESEARCHERS ARE IN COMMUNICATING
AND BEING INVOLVED IN THE NIH.
NAVBO HAS BEEN A LEADER IN
RECOGNIZING LYMPHATIC BIOLOGY AS
A SIGNIFICANT FOCUS IN VAR
COLLAR BIOLOGY, THE TOPIC OF
LYMPHATICS AT NAVBO'S ANNUAL
VASCULAR BIOLOGY MEETING BEGAN
WITH TWO TALKS IN 2010, AND BY
2012, THERE WERE TWO SESSIONS
RELATED TO LYMPHATICS.
AND OVERTHE YEARS, THERE HAS
BEEN AT LEAST ONE OR MORE
SESSIONS ON LYMPHATICS OR IN
OTHER SESSIONS HAVE INCORPORATED
PRESENTATIONS OF LYMPHATICS.
AND THERE'S ALSO BEEN POSTER
SESSIONS.
SINCE 2018, WHEN NAVBO BEGAN
ONLINE PROGRAMMING, THERE'S BEEN
14 EVENTS, WEBINARS, JOURNAL
CLUBS AND IN-FOCUS PRESENTATIONS
ON LYMPHATICS AND FIVE MID
CAREER AND EMERITUS AWARDS IMIFN
TO LYMPHATICS RESEARCHERS.
WHILE OUR FLORENCE SAVINE AWARD
NAMED BY THE ORIGINAL PIONEER IN
LYMPHATICS BIOLOGY RECOGNIZES
INDIVIDUALS WITH DIVERSITY,
EQUITY AND INCLUSION IN SOCIAL
ISSUES.
NAVBO IS BOTH COMMITTED TO
EDUCATING THE CURRENT AND FUTURE
LYMPHATIC BIOLOGISTS THROUGH
MULTIPLE AVENUES AND WE HAVE
DONE THIS IN CLOSE TIES AND WITH
THE SUPPORT OF THE NIH.
BEFORE I TURN THIS OVER TO JAN,
I'D LIKE TO POINT OUT A CONCERN
I HAVE ABOUT THE FUTURE OF
LYMPHATIC RESEARCH.
AS AN EDUCATION CHAIR, I'VE
BECOME VERY AWARE OF THE NEED TO
SUPPORT THE FUTURE GENERATIONS
OF SCIENTISTS, WHETHER IT BE
HIGH SCHOOL STUDENTS OR
POSTDOCTORAL FELLOWS.
PREPARING FOR THIS MEETING, I
USED THE NIH REPORTER TO
EVALUATE NIH INVESTMENT IN THE
FUTURE GENERATION OF LYMPHATIC
RESEARCHERS AND WAS CONCERNED BY
WHAT I FOUND.
SEARCHING FOR K AWARDS AND
LYMPHATICS AS TWO KEYWORDS, ONLY
TWO ACTIVE K AWARDS CAME UP IN
THE SEARCH.
WHEN I CHANGED TO THE SEARCH
WORD VASCULATURE, 293 ACTIVE K
AWARDS WERE CURRENTLY FUNDED.
THAT MEANS ONLY .6% OF K AWARDS
FOR VASCULAR BIOLOGY ARE
CURRENTLY GOING TO SCIENTISTS
FOR LYMPHATIC RESEARCH.
YET WE SEE THAT 14% OF NAVBO
MEMBERS ARE LYMPHATIC
RESEARCHERS.
IF WE WANT TO SUPPORT FUTURE
SCIENTISTS IN LYMPHATICS, WE
NEED RFAs AND PROGRAM
ANNOUNCEMENTS FOR TRAINING
GRANTS IN K AWARDS FOCUSED
SPECIFICALLY ON THE LYMPHATICS.
I KNOW FROM EXPERIENCE, I HAVE
RECEIVED SUPPORT FROM AN NCI
POSTDOCTORAL TRAINING GRANT, I
RECEIVED AN NIDDK K01 AWARD
SUPPORTED BY DEVELOPMENT AND
I'VE HAD TWO R01s THAT HAVE
BEEN AWARRED THROUGH THE PROGRAM
ANNOUNCEMENT PROGRAM ON
LYMPHATICS.
WE SHOULD BE BUILDING MORE
OPPORTUNITIES FOR YOUNG
SCIENTISTS TO ENTER THE FIELD.
AND I WILL PASS IT OVER TO JAN.
>> THANK YOU, CARRIE.
MY NAME IS JAN KITAJEWSKI.
I'M THE DIRECTOR OF THE
UNIVERSITY OF ILLINOIS CANCER
CENTER.
THE HEAD OF PHYSIOLOGY AT THE
UNIVERSITY OF ILLINOIS CHICAGO
CAMPUS.
PRIOR TO THAT, I SPENT 24 YEARS
AT COLUMBIA UNIVERSITY IN THE
DEPARTMENTS OF PATHOLOGY AND
OB-GYN, AND MY RESEARCH
STRADDLES THE WORK FROM
DEVELOPMENTAL, VASCULAR BIOLOGY
IN THE CASE OF LYMPHATICS,
DEVELOPMENT OF THE LYMPHATIC
SYSTEM, LARGELY WORK THAT I DID
IN COLLABORATION WITH CARRIE.
AND MORE RECENTLY, TUMOR LYMPH
ANGIOGENESIS AND METASTATIC
SPREAD TO THE LYMPH NODE AND
BEYOND.
I ALSO SERVE ON THE AMERICAN
ASSOCIATION OF CANCER RESEARCH,
CANCER CENTER DIRECTORS ADVISORY
GROUP, AND ONE OF MY ROLES THERE
IS TO DETERMINE WAYS THAT NIH
INSTITUTES CAN BRIDGE THEIR
ACTIVITIES TO ATTACK THE PROBLEM
OF CAM SER AND I VIEW THE ROLE
OF THE LYMPHATIC SYSTEM IN
CANCER AS A KEY AREA TO EXPAND
THAT TYPE OF WORK.
JUST TO BUILD ON WHAT CARRIE
SPOKE ABOUT, I WANTED TO TALK
ABOUT THE LYMPHATIC FORUM
BRIEFLY.
THIS WAS A MEETING THAT WAS
INITIATED IN A PROPOSAL I MADE
AS COUNSELOR AND THEN SUPPORTED
WHILE I WAS PRESIDENT OF NAVBO
WITH THE IDEA OF CREATING A
NATIONAL MEETING THAT BRINGS
TOGETHER DISCOVERY,
TRANSLATIONAL AND CLINICAL
RESEARCHERS TO EXCHANGE
INFORMATION AND ADVANCE TRAINING
DEVELOPMENT IN THE FIELD OF
LYMPHATIC BIOLOGY.
IT'S BEEN QUITE SUCCESSFUL,
HAVING RUN FOR --
>> EXCUSE ME, ONE MINUTE
REMAINING.
>> -- THANK YOU, A DECADE AND A
HALF.
I SHOULD SAY THAT NAVBO'S ROLE
IN THIS MEETING IS TO ASSURE
THAT BASIC TIS COVER REIN
TRANSLATIONAL RESEARCHERS ARE
BROUGHT TO A NATIONAL MEETING
AND HAVE THE OPPORTUNITY TO
INTERACT WITH PATIENT, PATIENT
ADVOCATES, AND CLINICIANS, AND
THIS IS FACILITATED LARGELY
THROUGH A COLLABORATION WITH
LEARN.
SO WE LOOK FORWARD TO UTILIZE
THE LYMPHATIC FORUM TO ADVANCE
THIS PARTICULAR EFFORT.
I ALSO HOPE THAT AACR WILL TAKE
A GREATER INTEREST IN THE
PROBLEM OF UTILIZING AND
UNDERSTANDING THE LYMPHATIC
SYSTEM TO ADVANCE IMMUNE
ONCOLOGY IN A VARIETY OF OTHER
ENTITIES, AND I'M GLAD TO KIND
OF PARTICIPATE IN THE FUTURE AS
A REPRESENTATIVE FROM AACR AS
WELL.
I LOOK FORWARD VERY MUCH TO THIS
MEETING AND CARRIE AND I ARE
REALLY DELIGHTED TO BE
REPRESENTING NAVBO, AS SHE'S
MENTIONED, IT'S HAD A RICH AND
DEEP HISTORY IN PROMOTING
SCIENCE AND SCIENTIFIC EXCHANGE
IN THE FIELD OF LYMPHATIC
BIOLOGY AND DISEASE.
THANK YOU.
>> THANKS SO MUCH, CARRIE AND
JAN.
WONDERFUL TO HAVE YOU HERE, AND
WE LOOK FORWARD TO HEARING ABOUT
WAYS IN WHICH WE CAN PARTNER
WITH NAVBO, WHO'S ALREADY TAKEN
QUITE A LEADERSHIP ROLE IN THIS
AREA.
OUR NEXT INVITED PANELIST
ACTUALLY REPRESENTS A SPECIFIC
CATEGORY THAT WAS REQUESTED BY
THE COMMISSION.
WE HAVE TWO SUCH INDIVIDUALS
INVITED TODAY, NAMELY
CLINICIAN-SCIENTISTS WHO HAVE
DEVOTED THEIR CAREERS TO
INVESTIGATING THE LYMPHATIC
SYSTEM IN THE ROLE OF
CLINICIAN-SCIENTIST.
OUR NEXT INVITED PANELIST IS
PROFESSOR MIIKKA VIKKULA WHO
REPRESENTS THE INTERNATI INTERNL
SOCIETY FOR THE STUDY OF
VASCULAR ANOMALIES.
SO MIIKKA, WELCOME.
>> WE CAN'T HEAR YOU, MIIKKA.
>> CAN YOU HEAR ME NOW?
>> YES.
>> PERFECT.
THANK YOU FOR THE INTRODUCTION
AND FOR THIS INVITATION FROM THE
COMMITTEE, FOR THE ORGANIZERS.
I'M CURRENTLY CO-DIRECTOR OF THE
INSTITUTE IN BRUSSELS, BELGIUM,
VERY STRONGLY AFFILIATED WITH
THE UNIVERSITY, THE MEDICAL
FACULTY HERE IN BRUSSELS,
BELGIUM.
I'M ALSO A MEMBER OF THE BELGIAN
ACADEMY OF MEDICINE, AND A
MEMBER NOW VICE PRESIDE VICE PRH
IS WHY I'M HERE TODAY.
I'M AN M.D. PH.D., THEN IN 1993,
I FLEW TO BOSTON, I WAS THERE
FROM '93 TO '97 AS A POSTDOC,
THAT IS WHEN I WAS INTRODUCED TO
THE FIELD OF VASCULAR ANOMALIES,
IT INCLUDES ALL THE LYMPHATIC
PROBLEMS AS WELL.
SO EVER SINCE I'VE BEEN WORKING
FOR THE PAST 30 YEARS IN THIS
FIELD, AND MAINLY LOOKING FOR
THE GENETIC ASPECTS, TRYING TO
UNDERSTAND WHY PEOPLE HAVE THESE
LYMPHATIC MALFORMATIONS OR
VASCULAR MALFORMATIONS OR
LYMPHEDEMA, BASICALLY FUNDED BY
NIH, EUROPEAN UNION,
COLLABORATIVE NETWORKS AS WELL,
AND CENTER OF EXCELLENCE FROM
THE BELGIAN SIDE ALSO FUNDING
THESE STUDIES.
I HAVE ALSO FOLLOWED THE LEARN
FROM THE VERY INITIATION, WHICH
I THINK HAS BEEN MAKING A GREAT
WORK IN MAKING AWARENESS OF
LYMPHEDEMA AND LYMPHATIC
DISEASES, WHICH AT THE BEGINNING
WHEN I STARTED MY WORK 30 YEARS
AGO, I THINK THAT WE HAVE VERY
MUCH BETTER WAY FROM WHERE WE
ARE NOW.
EVEN IF THERE'S STILL A LOT TO
BE DONE.
SO WE SEE THESE PATIENT
FREQUENTLY WEEKLY, DAILY,
THERE'S A LOT OF CONCERNS, LOTS
OF CLINICAL PROBLEMS, ALSO
REIMBURSEMENTS FOR TAKING CARE
OF THEIR PROBLEMS.
WE DO HAVE SURGERY, WE DO HAVE
LIPOSUCTION, WE HAVE BANDAGES,
WE HAVE THE LYMPHATIC DRAINAGE
THERAPY BY MASSAGE, BUT NOTHING
IS REALLY CURATIVE.
SO THIS IS KIND OF A LIFELONG
MANAGEMENT COPING WITH THE
DISEASE.
AND THAT, OF COURSE, IS VERY
HEAVY AND CAN CAUSE LOTS OF
PROBLEMS IN DAILY LIFE, IN WORK,
AND SO VERY IMPORTANT ASPECTS.
SO I AM HERE FOR ISSVA, AND WE
ACTUALLY RECENTLY REVISED THE
MISSION STATEMENT, SO ISSVA IS A
MULTIDISCIPLINARY INTERNATIONAL
SOCIETY OF PHYSICIANS,
SCIENTISTS AND HEALTHCARE
PROVIDERS UNITED BY AN INTEREST
IN VASCULAR ANOMALIES, MEANING
ALSO LYMPHATIC PROBLEMS.
THE SOCIETY AIMS TO PROMOTE THE
HIGH ETION STANDARDS OF CARE FOR
PATIENTS WITH VASCULAR ANOMALIES
BY ADVANCING CLINICAL AND
SCIENTIFIC KNOWLEDGE CONCERNING
CAUSES, DIAGNOSES AND TREATMENT,
AND BY EDUCATION OF PHYSICIANS,
HEALTHCARE PROVIDERS, PATIENTS,
AND THE COMMUNITY.
THE SOCIETY ENCOURAGES THE FREE
FLOW OF INFORMATION BETWEEN ITS
MEMBERS AND INDUSTRY GROUPS
THROUGH WORKSHOPS, MEETINGS, AND
TEACHING PROGRAMS AND BY THE
DISSEMINATION OF A
CLASSIFICATION SCHEME AND
PERTINENT SCIENTIFIC -- IT'S
TRUE THAT -- CLASSIFICATION
SHOULD BE SOON PUBLISHED, AND
THE INTEREST IN THE -- CAN BE
ALSO SEEN IN THE INCREASE OF THE
NUMBER OF PARTICIPANTS AT THE
ISSVA MEETINGS.
WE USED TO BE A SMALL GROUP 30
YEARS AGO, ABOUT 200 PEOPLE.
NOW IT'S OVER 900 PEOPLE AT
EVERY SECOND YEAR MEETING THAT
WE HAVE, WHICH IS NOW A WORLD
CONGRESS, AND THERE'S A LOT OF
THOUGHT HOW TO ORGANIZE THIS IN
THE FUTURE BECAUSE CLEARLY THERE
ARE MORE AND MORE PHYSICIANS AND
BASIC SCIENTISTS INTERESTED IN
THE FIELD, AND WE ALSO WANT TO
BRING THE PATIENT ASSOCIATIONS
ACTUALLY INTO THIS FIELD AS
WELL.
SO THAT'S ALL FOR ME, I HOPE.
THANK YOU VERY MUCH.
>> THANK YOU, MIIKKA.
THAT'S GREAT.
WE'LL BE DISCUSSING MORE ONCE WE
GET TO THE END OF ALL THE
INTRODUCTIONS.
MY NEXT INTRODUCTION IS FOR
REPRESENTATIVES OF THE
MICROCIRCULATORY SOCIETY, SO
AGAIN, I'LL LEAVE TO THE TWO OF
YOU TO DIVIDE YOUR TIME.
I HAVE DR. POONEH BAGHER AND DR.
>> THANK YOU SO MUCH, AND THANK
YOU FOR INVITING UTS TO
PARTICIPATE IN THIS IMPORTANT
MEETING.
I'M POONEH BAGHER, ASSOCIATE
PROFESSOR IN THE DEPARTMENT OF
CELLULAR AND INTEGRATED
PHYSIOLOGY AT THE UNIVERSITY OF
NEBRASKA MEDICAL CENTER.
MY RESEARCH IS IN THE FIELD OF
VASCULAR PHYSIOLOGY.
I'M JOINING TODAY AS I'M THE
CURRENT PRESIDENT OF THE
MICROCIRCULATORY SOCIETY.
WE CALL IT THE MCS FOR SHORT,
AND I'M HERE WITH OUR IMMEDIATE
PAST PRESIDENT, JERRY BRESLIN.
WE REPRESENT ONE OF THE
SOCIETIES THAT SERVES AS A
NETWORKING HOME FOR NUMEROUS
LYMPHATIC RESEARCHERS.
OUR SOCIETY'S MISSION IS TO
ACTIVELY ENGAGE AND PROMOTE
INNOVATIVE RESEARCH PERTAINING
TO MICROCIRCULATORY AND
LYMPHATIC FUNCTION IN HEALTH AND
DISEASE.
WE ORGANIZE SCIENTIFIC MEETINGS
TO FACILITATE INTERACTIONS AND
NETWORKING BETWEEN SCIENTISTS TO
SPARK NEW IDEAS, OFTEN
PARTNERING WITH OTHER SCIENTIFIC
SOCIETIES.
WE ALSO FEATURE AN ANNUAL AWARD
HIGHLIGHTING INNOVATIVE WORK
FROM A JUNIOR INVESTIGATOR IN
THE LYMPHATIC FIELD.
I'LL NOW LET JERRY SPEAK, AS
HE'S AN ACTIVE LYMPHATIC
RESEARCHER.
>> THANK YOU, POONEH.
I'D JUST LIKE TO HIGHLIGHT THE
WORK THAT SEVERAL OF OUR MEMBERS
HAVE ENGAGED IN THAT'S DIRECTLY
RELEVANT TO LYMPHATIC DISEASE.
SO MEMBERS OF THE MCS HAVE BEEN
INVESTIGATING LYMPHATIC VESSELS
FOR THE PAST 70 YEARS.
IN FACT ONE OF OUR FOUNDERS AND
OUR TRAINEES -- OR HIS TRAINEES
INCLUDING ARTHUR GIDEN AND G
ERSHMAN STUDY THE MECHANICS OF
LYMPH TRANSPORT.
FOLLOWED BY ANOTHER GENERATION
OF RESEARCHES INCLUDING MIKE
DAVIS AND DAVID ZAVEA WHO
DESIGNED PROTOCOLS TO ISOLATE
AND CANNULATE LYMPHATIC VESSELS
TO BE ABLE TO UNDERSTAND THEIR
MECHANISMS OF PUMP FUNCTION.
SO SINCE THEN THE SLIGHTLY
YOUNGER GENERATION HAVE STARTED
TO' PLY THIS TO DISEASES SUCH AS
METABOLIC SYNDROME, AGING AND
BOTH PRIMARY AND SECONDARY
LYMPHEDEMA SO THIS INCLUDES
PEOPLE AND ALSO I SHOULD MENTION
MARI WHO IS ABOUT TO LEAD THE
FIRST EVER LYMPHATIC ORIENTED
NIH T32 TRAINING GRANT IN THE
NATION.
IN ADDITION, THE GENERATION
WHO'S AFTER US WHO ARE NOW
BECOMING ESTABLISHED
INVESTIGATORS INCLUDING PEOPLE
LIKE JOSH SCALLEN, ING YUNG, TO
NAME A FEW, ARE STUDYING A WIDE
RANGE OF NEW MERCK NISMS
RELATIVE TO LYMPHATIC PUMPING,
MALFORMATION AND MATURATION IN
INTRACELLULAR SIGNALING IN
LYMPHATIC VESSELS IN BOTH THE
CONTEXT OF HEALTH AND DISEASE.
SO AS A SCIENTIFIC SOCIETY, WE
AIM TO HIGHLIGHT THE ADVANCES
MADE BY THESE MEMBERS AT
MULTIPLE MEETINGSAGE SCIENTISTS
EACH YEAR TO SPARK NEW
INNOVATIONS AND ENCOURAGE MORE
RESEARCH THAT WILL ADVANCE OUR
KNOWLEDGE OF THE LYMPHATIC
SYSTEM AND ULTIMATELY TRANSLATE
INTO MORE POSITIVE OUTCOMES FOR
PATIENTS WITH LYMPHATIC
DISEASES.
SO I'D LIKE TO HAND IT BACK TO
POONEH, WHO CAN TALK A LITTLE
BIT MORE ABOUT THAT.
>> THANKS, JERRY.
JUST TO EXPAND ON WHAT JERRY
SAID, IN RECENT YEARS, WE HAVE
COLLABORATED WITH THE NORTH
AMERICAN VASCULAR BIOLOGY
ORGANIZATION, WHICH WE'VE
ALREADY HEARD FROM THEM A LITTLE
BIT EARLIER, AND WE'VE SPONSORED
SYMPOSIA HIGHLIGHTING LYMPHATIC
RESEARCH AT THEIR ANNUAL
MEETING, PLUS WE'VE ALSO HAD
SYMPOSIA AT THE LYMPHATIC FORUM,
WHICH WAS ALSO MENTIONED EARLIER
WHY.
WE ALSO HAVE WORKED WITH THE
AMERICAN PHYSIOLOGICAL SOCIETY
TO MAKE SURE THAT LYMPHATIC
RESEARCH IS REPRESENTED IN THEIR
ANNUAL MEETING PROGRAM.
IF YOU'D LIKE TO LEARN MORE
ABOUT OUR SOCIETY, PLEASE FEEL
FREE TO CONTACT MYSELF OR JERRY
OR YOU CAN VISIT OUR WEBSITE.
IT'S MICROCIRC.ORG.
WE'RE HIGHLY INTERESTED IN
FACILITATING ADVANCES IN
LYMPHATIC RESEARCH AND ARE HAPPY
TO BE HERE AND TO OUR SUPPORT.
SO THANK YOU VERY MUCH.
>> THANK YOU SO MUCH, POONEH AND
JERRY.
AND I'M SORRY ABOUT THE
MISPRONUNCIATION OF YOUR LAST
NAME, DR. BAGHER.
>> NO PROBLEM.
>> OUR NEXT INVITED SPEAKER IS
DR. MICHAEL KELLY, WHO
REPRESENTS LGDA, THE
LYMPHANGIOMATOSIS AND GORHAM'S
DISEASE ALLIANCE.
>> THANK YOU, DR. ROCKSON, AND
THANK YOU TO THE NATIONAL
COMMISSION ON LYMPHATIC DISEASES
FOR THE INVITATION.
I'M MIKE KELLY.
I'M A PHYSICIAN SCIENTIST AT
CLEVELAND CLINIC, AND HEAD OUR
VASCULAR ANOMALY PROGRAM THERE.
ALSO THE EXECUTIVE DIRECTOR OF
DIRECTOR OFLGDA.
THIS IS A PATIENT ADVOCACY
ORGANIZATION FORMED IN 2007 BY
JANA, A PATIENT WHO WANTED
REALLY TO PROVIDE A SUPPORTIVE
COMMUNITY TO THOSE WITH SIMILAR
DISEASES AND THEIR FAMILIES.
THE LGDA HAS EVOLVED OVER THAT
TIME, AND EXISTS TO ADVANCE THE
CARE OF PATIENTS WITH RARE
COMPLEX LYMPHATIC ANOMALIES
THROUGH PATIENT SUPPORT, MEDICAL
EDUCATION AND ADVANCEMENT OF
RESEARCH.
COMPLEX LYMPHATIC ANOMALIES
INCLUDE DISEASES SUCH AS GORHAM
STOUT DISEASE, GENERALIZED
LYMPHATIC ANOMALY, AND CENTRAL
CONDUCTING LYMPHATIC ANOMALY.
THESE DISEASES RESULT IN
ABNORMAL LYMPHATIC PROLIFERATION
AND FUNCTION INVOLVING MULTIPLE
ORGANS INCLUDING BOTH SOFT
TISSUES AND BONES.
THEY'RE DEVELOPMENTAL DISEASES
CAUSED BY SOMATIC AND LESS
COMMONLY GERMLINE VARIANTS AND
GENES RESULTING IN
HYPERACTIVATION OF THE
PI3 KINASE AS WELL AS RAS
SIGNALING PATHWAYS.
TO RAISE AWARENESS AND IMPROVE
GLOBAL IMPACT, THE LGDA HAS
ESTABLISHED FORMAL
COLLABORATIONS WITH TWO LIKE
ORGANIZATIONS.
THE LYMPHATIC MALFORMATION
INSTITUTE, OR LMI, AND LGDA
EUROPE.
THESE ORGANIZATIONS SHARE
PRIORITIES, ADVISORY COUNCILS
INCLUDING THE MEDICAL AND
SCIENTIFIC ADVISORY COUNCIL, AND
A PATIENT COMMUNITY ADVISORY
COUNCIL, AND FUNDS TO RAISE
GLOBAL AWARENESS OF AND SUPPORT
FOR CLAs.
OVER THE PAST 10 YEARS, THIS
CONSORTIUM OF ORGANIZATIONS HAS
PROMOTED RESEARCH ADVANCEMENT
THROUGH SPONSORING A SCIENTIFIC
CONFERENCE EVERY OTHER YEAR,
BRINGING TOGETHER INTERNATIONAL
EXPERTS IN THE STUDY AND CARE OF
CLAs.
DEVELOPING CLA RESEARCH NETWORK
THAT'S NOW INCLUSIVE OF OVER 200
INTERNATIONAL INVESTIGATORS WITH
A MONTHLY SEMINAR SERIES.
WE'VE PROVIDE OVER $8 MILLION IN
RESEARCH FUNDING OVER THAT
PERIOD OF TIME, AND AWARDS HAVE
FUNDED OVER 50 NEW AND
ESTABLISHED INVESTIGATORS IN THE
FIELD OF CLAs REPRESENTING 11
DIFFERENT COUNTRIES AND FOUR
CONTINENTS.
FUNDING HAS BEEN INSTRUMENTAL IN
SUPPORTING CLA INVESTIGATORS WHO
HAVE DEVELOPED NEW PRE-CLINICAL
MODELS OF DISEASES, INNOVATIVE
IMAGING TECHNOLOGIES THAT ARE
NOW STANDARD OF CARE, REGISTRIES
AND BIOREPOSITORIES IMPORTANT
FOR NATURAL HISTORY STUDIES, AS
WELL AS ANNOTATED PATIENT
SAMPLES.
NEW MEDICAL THERAPIES TARGETING
GENETIC VARIANTS CAUSING CLAs,
AS WELL AS STUDIES TO BETTER
UNDERSTAND THE CHALLENGES AND
BARRIERS FACED BY OUR PATIENTS
WITH CLAs AND THEIR FAMILIES.
OUR ORGANIZATION'S WORK TO RAISE
AWARENESS OF CLAs THROUGH
PARTNERING WITH LIFE SCIENCE
COMPANIES AND PARTNERING AS A
GUEST ORGANIZATION IN THE
TRANS-NIH LYMPHATIC COORDINATING
COMMITTEE, PARTICIPATING IN THE
INTERNATIONAL SOCIETY FOR THE
STUDY OF VASCULAR ANOMALIES OR
ISSVA, CONSORTIUM OF
INTERNATIONAL INVESTIGATORS FOR
VASCULAR ANOMALIES, OR CI IVA.
THIS YEAR WE HAVE SEVERAL
PLANNED INITIATIVES INCLUDING
DEVELOPMENT OF CONSENSUS OF CARE
GUIDELINES FOR CLAs.
WE PLAN TO INITIATE A CLA
EDUCATION SERIES TARGETING
NON-EXPERT MEDICAL PROFESSIONALS
AND TRAINEES, AND WE'RE
REORGANIZING OUR GLOBAL PATIENT
REGISTRY TO MAKE IT MORE
RESEARCH-RELEVANT.
I REALLY APPRECIATE THE
OPPORTUNITY TO BRING THE PATIENT
VOICE TO THESE ACTIVITIES.
I THINK THAT REPRESENTING VERY
RARE OR ULTRA-RARE LYMPHATIC
DISEASES AND THE PATIENT
EXPERIENCE IS PARAMOUNT, AND
HOPEFULLY -- AND I LOOK FORWARD
TO PARTICIPATING IN THE
WORKSHOP, AND BRINGING THAT
PERSPECTIVE AS WE MOVE FORWARD.
THANK YOU.
>> THANKS SO MUCH, MIKE.
NEXT UP, WE'RE GOING TO HEAR
FROM THE GORDON RESEARCH
CONFERENCE SERIES.
MANY OF YOU KNOW THAT THIS IS A
SERIES OF OVER 200 MEETINGS THAT
ARE EITHER ANNUAL OR BIENNIAL,
AND REPRESENT WIDE
MULTIDISCIPLINARY AREAS OF
BIOMEDICAL RESEARCH.
IN THIS CASE, THE GRC HAS
SUPPORTED A LYMPHATICS MEETING
SINCE 2004, AND I'M PLEASED TO
INTRODUCE THE INDIVIDUAL WHO
JUST COMPLETED HIS TENURE AS
CHAIR OF THAT SESSION, DR. BEN
HOGAN.
>> THANKS, DR. ROCKSON, FOR THAT
INTRODUCTION, AND GOOD EVENING
FROM MELBOURNE, AUSTRALIA, TO
ALL OF YOU.
I'M REALLY GRATEFUL FOR THE
OPPORTUNITY TO BE INVOLVED IN
THIS COMMISSION, WHICH I'D SAY
IS A PROCESS THAT IS INCREDIBLY
IMPORTANT ALL AROUND THE WORLD
FOR RESEARCHERS, CLINICIANS AND
PATIENTS WITH LYMPHATIC DISEASE.
SO BY WAY OF INTRODUCTION, I'M A
SCIENTIST, I'M A PH.D.-TRAINED
SCIENTIST IN DEVELOPMENTAL
GENETICS AND SELL BIOLOGY.
-- AND CELLBIOLOGY.
I RECEIVED MY PH.D. BACK IN
2005.
BEFORE I MOVED TO THE
NETHERLANDS AND REALLY BECAME A
LYMPHATIC VASCULAR BIOLOGIST FOR
THE FIRST TIME, STUDYING
ZEBRAFISH TO TRY -- AND ALSO
MOUSE MODELS TO TRY AND DISCOVER
GENES AND MOLECULAR PATHWAYS
INVOLVED IN THE FORMATION OF
LYMPHATIC VESSELS AND TISSUES.
REALLY, THAT WORK LED TO
DISCOVERIES IN INHERITED LYMPH
DEMA.
I'M CURRENTLY ASSOCIATE DIRECTOR
OF RESEARCH AT THE KENT CENTER
HERE IN MELBOURNE.
THIS IS AUSTRALIA'S LARGEST KENT
HOSPITAL IN CANCER RESEARCH
CENTER, AND IN THAT ROLE, I
OVERSEE 34 RESEARCH LABS AND
FIVE CORE FACILITIES, ABOUT 750
SCIENTISTS AND SUPPORT STAFF.
SO IN THAT ROLE, I HAVE A GOOD
GRASP, I GUESS, OF DISCOVERY
SCIENCE PRE-CLINICAL AND EVEN
CLINICAL RESEARCH IN CANCER.
AND WE HAVE A GROWING INTEREST
IN DISEASES OF SURVIVORSHIP AND
LYMPHEDEMA IN CANCER PATIENTS.
SO I'M HERE TODAY REPRESENTING
THE GOLDEN RESEARCH COMMUNITY IN
LYMPHATICS, IT'S BEEN RUNNING
SINCE 2004, AND THE LAST FEW
GORDON RESEARCH LYMPHATIC
CONFERENCES HAVE BEEN
OVERSUBSCRIBED, AND IT'S REALLY
BECOME, I THINK, A KEY MEETING
FOR LYMPHATIC RESEARCHERS ALL
AROUND THE WORLD.
WE'VE SEEN AN EXPLOSION IN THE
TOPICS THAT ARE COVERED AT
GORDON RESEARCH LYMPHATIC
CONFERENCES OVER RECENT YEARS,
AND REALLY LYMPHATIC BIOLOGY AT
A FUNDAMENTAL LEVEL REACHING
INTO MANY DIFFERENT TYPES OF
DISEASES AND DISEASE OUTCOMES,
AND WE REALLY HAVE SEEN I THINK
THAT THAT MEETING HAS BEEN --
SCIENTISTS, PRE-CLINICAL AND
CLINICAL RESEARCHERS AS WELL.
I THINK IT'S EXCITING TIMES FOR
FUNDAMENTAL LYMPHATIC RESEARCH,
SO I'M VERY, VERY PLEASED TO BE
HERE, AND I THANK YOU AGAIN,
STAN, FOR THE OPPORTUNITY.
>> THANKS SO MUCH, BEN.
WE LOOK FORWARD TO INTERACTING
WITH YOU ABOUT HOW THE GRC CAN
HELP.
IT'S NEXT MY GREAT PLEASURE TO
INTRODUCE THE CURRENT PRESIDENT
OF THE INTERNATIONAL SOCIETY OF
LYMPHOLOGY, DR. EE ADVAN EVANGES
DIMAKAKOS.
>> HELLO TO EVERYBODY.
THANK YOU VERY MUCH FOR THE KIND
INVITATION.
IT AN HONOR FOR ME AND FOR THE
NATIONAL SOCIETY TO BE TOGETHER
WITH YOU TO DISCUSS THIS VERY
IMPORTANT THING AT THIS MEETING.
MY NAME IS EVAN DIMAKAKOS, I AM
THE VICE PRESIDENT OF THE
SCIENTIFIC COMMITTEE IN EUROPEAN
SOCIETY OF LYMPHOLOGY.
I AM PRESIDENT OF THE NATIONAL
SOCIETY OF LYMPHOLOGY.
I'M HEAD -- DIFFERENT
PUBLIC-PRIVATE HOSPITAL IN
GREECE, HELLO FROM GREECE, AND
THIS IS -- TO SAY A FEW THINGS
CONCERNING THE INTERNATIONAL
SOCIETY OF LYMPHOLOGY.
THIS I HAVE TO SAY TO YOU THAT
THE NATIONAL SOCIETY OF
LYMPHOLOGY IS THE -- THE
NATIONAL SOCIETY OF LYMPHOLOGY
IS THE SOUL OF EDUCATION.
ABOUT 1960, WE HAD THE CREATION
OF THE NATIONAL SOCIETY OF
LYMPHOLOGY, AND FEW PERSONS WERE
TOGETHER WITH THE DREAMS THAT
THE LYMPHATIC PROJECT AND THEY
GO TOGETHER IN ORDER TO -- THIS
SOCIETY IN ORDER TO -- THEIR
KNOWLEDGE AND THEIR EXPERIENCES
ON THE LYMPHATIC SYSTEM AND
DISEASE, LYMPHATIC DISEASE.
SO 1960, WE HAD THE NATIONAL
SYMPOSIUM OF LYMPHATIC -- THE
NATIONAL LYMPHATIC SYMPOSIUM,
AND THIS IS, I HAVE TO SAY, IN
THE YEARS OF 60s -- WAS THE
FIRST -- HIS FIRST STUDIES ON
IMAGING -- HIS STUDIES, WE HAVE
THE FIRST -- IMAGING METHODS --
TUMOR OF LYMPHATIC SYSTEM.
CLAUDE JUST, A PLASTIC SURGEON
WHO WILL TALK ABOUT FOR THE
FIRST STEPS OF THE SURGEONS
OPERATION ON THE LYMPHATIC
PROBLEMS, AND ALLAN DUMONT, IN
1977, THEY PUBLISHED A BOOK
CONCERNING THE -- OF THORACIC
DUCT CANNULA.
ANOTHER LEADER OF THE NATIONAL
SOCIETY OF LYMPHOLOGY, OLEFSKY
FROM POLAND, A LOT OF
PUBLICATIONS CONCERNING THE
PHYSIOLOGY, PATHOPHYSIOLOGY, HE
WAS A SURGEON, WHO'S -- ON
INFECTIONS OF THE SKIN
CONCERNING THE LYMPHADEMA.
ANOTHER PERSON IS AKUMA FROM
JAPAN, A LOT OF PUBLICATIONS ON
INFECTION AND THE TREATMENT OF
THIS INFECTION CONCERNING THE
LYMPHATIC PROBLEMS.
BEESUS -- THE STEM -- THEY
FOCUSED ON -- WHAT IS LYMPHATIC
PROBLEM, YOU KNOW EVERYBODY THE
STEM SIDE.
-- TREATMENT.
WE HAD THE TECHNIQUES OF --
TECHNIQUES, AND FEW PERSONS ALL
OVER THE WORLD, -- FOR AUSTRA
AUSTRALIA, THEY -- A LOT OF
THINGS AND NOW WE HAVE THE
COMPLETE -- THERAPY IS THE GOLD
STANDARD OF -- TREATMENT BECAUSE
OF THEM, OF THIS -- OF SOCIETY
OF LYMPHOLOGY PERSONS.
SURGICAL TREATMENT -- MOST OF
YOU KNOW THESE NAMES, A LOT OF
THANKS, NOW WE HAVE A LOT OF
SURGICAL TREATMENTS IF YOU HAVE
LYMPHATIC PROBLEMS WHEN -- CAN
MAKE THIS SURGICAL OPERATION.
CONCERNING ME, I PUBLISHED IN
THE FIRST PUBLICATION ON MRI
LYMPHOGRAPHY, OTHER PERSONS FROM
INDIA, THEY HAVE -- THEY
PUBLISHED A LOT OF PAPERS ON
FILARIASIS, SURGICAL TREATMENT
OF FILARIASIS, AND WE HAVE A LOT
OF --
>> YOU HAVE ONE MINUTE
REMAINING.
>> OKAY.
SO THIS IS SPECIAL THAT I SAID
TO YOU, PRESIDENT OF THE
NATIONAL SOCIETY OF -- OF
LYMPHOLOGY, IT'S NOT THE WORK OF
ONE PERSON, BUT THE TEAM, A LOT
OF PERSONS WORK TOGETHER, COME
TOGETHER IN ORDER TO HAVE VERY
GOOD RESULTS.
THE PROBLEM NOW IS THAT IN 2024,
WE HAVE A LOT OF INFORMATION, A
LOT OF AWARENESS, ESPECIALLY FOR
THE ORGANIZATION -- MEDICAL
RESEARCH, BUT OUR PROBLEM IS
MORE THAT WE HAVE NO EDUCATION,
WE HAVE PROBLEM WHAT IS
LYMPHADEMA, WHAT IS -- WHAT IS
THE TREATMENT OF LYMPHADEMA.
THANK YOU VERY MUCH, ALL OF YOU,
AND ESPECIALLY PROFESSOR ROCK
ROCKSON, TO BE WITH YOU.
>> THANK YOU VERY MUCH,
DR. DIMAKAKOS, AND WE LOOK
FORWARD TO INTERACTING WITH YOU.
NOW OUR NEXT INVITED SPEAKER
REPRESENTS THE AMERICAN VENOUS
FORUM, DR. FEDOR LURIE.
>> THANK YOU.
MY APOLOGIES, MY CONNECTION MAY
NOT BE STABLE, SO I'D BETTER
TURN OFF THE CAMERA.
THANK YOU VERY MUCH FOR INVITING
ME TO THIS VERY IMPORTANT
MEETING, AND CONGRATULATIONS TO
THE COMMITTEE TO MAKING SUCH A
FANTASTIC PROGRESS IN A VERY
SHORT TIME.
MY NAME IS FEDOR LURIE.
I AM A VASCULAR SURGEON,
ASSOCIATE DIRECTOR IN TOLEDO,
OHIO AND RESEARCH PRO
>> Profes PROVE -- I
REPRESENT THE AMERICAN VENOUS
FORUM, TO WHICH I WAS -- AM PAST
PRESIDENT.
THROUGH MY PERSONAL CAREER AS A
VASCULAR SURGEON STUDYING IN
1980, MY RESEARCH AND CLINICAL
INTERESTS EVOLVE FROM
HEMODYNAMICAL ASPECTS OF THE
DISEASE TO MORE AND MORE
REALIZATION OF THE ROLE
LYMPHATICS BOTH IN NORMAL
PHYSIOLOGY AND IN A VARIETY OF
CONDITIONS RELATED TO VASCULAR
DISEASES.
AND SAME EXPERIENCE WE HAVE WITH
OUR ORGANIZATION THAT I'M
REPRESENTING, THE AMERICAN
VENOUS FORUM'S MISSION IS TO
PROMOTE SCIENCE, EDUCATION, AND
ADVOCACY IN VENOUS AND LYMPHATIC
DISORDERS.
IT STARTED ITS EXISTENCE
32 YEARS AGO, AND FROM THE
BEGINNING, VENOUS AND LYMPHATIC
DISORDERS WERE CONNECT WOULD
UNDER THE SAME UMBRELLA.
HOWEVER, AS I MENTIONED THROUGH
MY PERSONAL HISTORY SIMILAR
THINGS WAS HAPPENING WITH THIS
ORGANIZATION, AND THE FIRST FIVE
OR SIX YEARS WERE DEDICATED
MOSTLY TO THE DISEASE, AND --
REPRESENTATION IN VENOUS AND
LYMPHATIC DISORDERS.
NOW THE AMERICAN VENOUS FORUM
MEMBERSHIP IS MULTI-SPECIALTY,
BUT MOSTLY FOCUSED ON PHYSICIANS
AND CLINICAL RESEARCHERS.
WE ABOUT 20 YEARS AGO STARTED
DEVELOPING THE BRANCH THAT WILL
IN THE FUTURE ADDRESS EDUCATION
AND TRAINING FOR MORE
TRANSLATIONAL AND CLINICAL
RESEARCH.
TO DO THAT, WE DEVELOPED THREE
GRANTS, WHICH ARE NOT -- BUT
SUBSTANTIAL.
HISTORICALLY, THE FIRST ONE IS
CLINICAL RESEARCH, THE SECOND
ONE WAS IN TRANSLATION RESEARCH,
AND FROM FOUR YEARS AGO, WE HAVE
ALSO A GRANT FOR BASIC RESEARCH
IN BOTH VEE MUST AND LYMPHATIC
DISORDERS.
UNFORTUNATELY UP TO THIS YEAR,
THE MAJORITY OF THE GRANTS WERE
GIVEN FOR PROJECTS IN VENOUS
DISEASES.
THE 2 25 GRANTEES, ONLY ONE
SUBMITTED APPLICATION AND
SUCCESSFULLY COMPLETED THE
PROCESS FOR LYMPHATIC DISORDERS.
THAT'S DEFINITELY A GAP AND
DEFINITELY NEEDS TO BE ADDRESSED
BY THE ORGANIZATION.
I WOULD LIKE TO ECHO THE
COMMENTS FROM PREVIOUS SPEAKERS,
THERE IS A REAL NEED FOR
TRAINING, AND REAL NEED FOR
ADVANCING THEIR YOUNGEST
SCIENTISTS IN THE AREA OF
LYMPHATIC DISORDERS, AND I AM
TALKING MOSTLY FROM PERSPECTIVE
OF AMERICAN -- FOR COLLABORATION
BETWEEN CLINICIANS, CLINICAL
RESEARCHERS, AND BASIC SCIENCE
RESEARCHERS.
SO I'M GRATEFUL FOR INVITING ME
TO THIS MEETING AND I'M LOOKING
FORWARD TO PARTICIPATE IN THE
CONVERSATION.
THANK YOU.
>> THANK YOU SO MUCH, FEDOR.
OUR FINAL PANELIST BEFORE WE
START OUR INTERACTIVE SESSION IS
THE SECOND OF OUR INVITED
CLINICIAN-SCIENTISTS, AND IN
ADDITION, REPRESENTS THE
NATIONAL HEART, LUNG AND BLOOD
INSTITUTE, THE INTRAMURAL
BRANCH, SO DR. JOEL MOSS,
WELCOME.
>> THANK YOU, INTER DR. ROCKSON.
I'M SENIOR INVESTIGATOR IN THE
LABORATORY OF TRANSLATIONAL
RESEARCH IN THE HEART, LUNG AND
BLOOD INSTITUTE.
THE HEA HEART, LUNG AND BLOOD
INSTITUTE INTRAMURAL RESEARCH
PROGRAM, I'M BASICALLY STUDYING
TWO DISEASES,
LYMPHANGIOLEIOMYOMATOSIS, OR
LEM, A SPORADIC FORM OF LUNG
DISEASE ASSOCIATED WITH ABOUT
20% OF PATIENTS DEVELOPING
LYMPHATIC ABNORMALITIES AND
OTHERS DEVELOPING RENAL ANG
ANGIOLIPOMASS, ASSOCIATED WITH
ASCITES, TUMOR-LIKE STRUCTURES
IN THE ABDOMEN AND PRIMARILY AND
ALSO IN THE THORAX, AND
ASSOCIATED WITH LYMPHATIC
INVOLVEMENT BY THE LYMPHATIC
CELLS INFILTRATING THE LYMPHATIC
SYSTEM AS CHARACTERISTIC OF THIS
CANCEROUS PROCESS.
THESE STUDIES ARE CARRIED OUT AT
THE CLINICAL CENTER OF THE NIH
WHICH IS A UNIQUE RESOURCE FOR
PROTOCOL DELIVERED RESEARCH.
THE NHLBI ALSO SUPPORTS TRAVEL
FOR PATIENTS FROM ANYWHERE IN
THE U.S. TO THE NIH IN BETHESDA,
MARYLAND, AS WELL AS PATIENTS
WHO COME OVERSEAS TO THE POINT
OF ENTRY INTO THE U.S. TO AGAIN
THE NIH.
WE ALSO, SINCE THE PHYSICIANS
WHO MAY BE CARING FOR THESE
PATIENTS ON THE OUTSIDE WHO MAY
NOT BE FAMILIAR WITH THESE RARE
DISEASES, BY GIVING THEM ANY OF
THE CLIA APPROVED DATA THAT WE
GENERATE AT THE NIH.
IMPORTANT FOR BOTH THESE
PATIENTS IS THE FACT THAT THE
STUDIES ON LAM -- THE LAM
FOUNDATION SUPPORTS STUDIES ON
SPORADIC LAM AND THE
TUBERCULOSIS -- WHICH OCCURS IN
THE PRESENCE OF -- WHICH
INVOLVES MANY OTHER ORGANS
WITHIN THE BODY.
ONE OF THE THINGS THAT IS VERY
IMPORTANT TO THE PATIENTS IS
THEIR ABILITY TO GET MORE
EDUCATION ABOUT THIS RARE
DISEASE, AND ON EVERY TUESDAY
EVENING, WE HAVE ABOUT A
TWO-HOUR SESSION WHERE WE
DISCUSS THEIR DISEASE, WE ANSWER
PATIENT QUESTIONS, AND WHAT WE
TRY TO DO IS HAVE A
PATIENT-ORIENTED MEETING THAT
ESSENTIALLY LOOKS TO THE PATIENT
VOICE IN EACH OF THESE DISEASES
IN TERMS OF WHAT THEIR CONCERNS
ARE.
WE USUALLY HAVE A LAM LIAISON
FROM THIS AREA WHO COMES TO
THESE MEETINGS AND IS WILLING TO
TALK TO THE PATIENTS AND
INTRODUCE BOTH THE -- SOCIETY AS
WELL AS THE LAM FOUNDATION TO
THE PATIENTS AND PROVIDE THEM
WITH DATA AND INFORMATION THAT
THE PATIENTS CAN USE TO CONTACT
THE SOCIETY THAT MAY BE
APPROPRIATE TO THEM.
IT'S ALSO IMPORTANT IN RARE
DISEASE TO HAVE ENROLLMENT, AND
IN THIS CASE, THE LAM FOUNDATION
AND TUBULAR SCLEROSIS ALLIANCE
ARE VERY IMPORTANT TO US IN
TERMS OF GETTING INCREASED
ENROLLMENTS TO THE SOCIETY.
OVER THE COURSE OF THE YEARS
THAT WE'VE BEEN STUDYING THESE
DISEASES, WE'VE ENROLLED OVER
800 PATIENTS WITH LAM AND ABOUT
A HUNDRED PATIENTS WITH TUBULAR
SCLEROSIS.
AS EVIDENT FROM THE NATURE OF
THE ORIGINS OF THE NATIONAL
COMMISSION, IT'S ALSO IMPORTANT
FOR OVERALL FOR LYMPHATIC
DISEASES, AND AGAIN, THE NHLBI
IS IMPORTANT IN TERMS OF
ORGANIZING VARIOUS MEETINGS
WITHIN THE -- AT THE NIH, AS
WELL AS INTERACTING WITH LEARN
AND BILL REPISI, WHO IS THE
DIRECTOR OF LEARN, IN TERMS OF A
PATIENT SUPPORT ORGANIZATION
THAT HELPS WITH OTHER LYMPHATIC
DISEASES.
THE NHLBI EXTRAMURAL PROGRAM HAS
ALSO BEEN USEFUL IN TERMS OF
HELPING DR. ROCKSON, WHO IS HERE
AS AN IPA INTERGOVERNMENTAL --
TO WORK WITH THE NHLBI FOR A
NUMBER OF YEARS IN TERMS OF
DEVELOPING LICK FA TICK SYSTEM
WITHIN THEMENT -- ON WHAT WE CAN
DO IN LAM AND TUBULAR SCLEROSIS.
THANK YOU.
>> THANKS SO MUCH, JOEL.
SO I THINK THAT BRINGS US TO THE
CONCLUSION TO OUR INITIAL
INTRODUCTIONS AND NOW IT'S GOING
TO BE TIME FOR THE COMMISSION AS
A GROUP TO INTERACT WITH THE
GROUP OF YOU AS PANELISTS I ALSO
WANT TO MENTION DR. VIKKULA AND
DR. MOSS HAVE ALSO GRACIOUSLY
AGREED TO PARTICIPATE IN OUR
AFTERNOON PANEL DISCUSSION, SO
YOU GUYS ARE GOING TO GET TO
INTRODUCE YOURSELF ALL OVER
AGAIN TO THE NEW ATTENDEES THE
NEXT TIME AROUND.
SO THIS IS GOING TO BE THE TIME
IN WHICH WE AS COMMISSION
MEMBERS CAN DIRECTLY ASK
QUESTIONS OF SPECIFIC
REPRESENTATIVES WHO ARE HERE OR
COLLECTIVELY TO THE PANEL AS A
WHOLE, AND BECAUSE I THINK THE
VIRTUAL FORMAT MAY NOT BE HIGHLY
CONDUCIVE TO THIS KIND OF
INTERACTIVE ENVIRONMENT, I'M
GOING TO TAKE THE PREROGATIVE OF
STARTING OUT AND ASKING AN
INITIAL -- FOR PANEL AS A WHOLE,
AND I HOPE YOU ALL WILL RESPOND
TO THIS, ALL OF YOU ARE
REPRESENTING SOCIETIES OR
FOUNDATIONS WHO HAVE AN
IMPORTANT STAKE IN THIS TOPIC
AREA, AND WE'VE ALSO HEARD QUITE
COMPELLINGLY THROUGH THE COURSE
OF THE MORNING HOW MUCH
EDUCATIONAL IMPERATIVES ARE
VITAL AND THE DEGREE TO WHICH
THEY MAY BE LACKING IN CERTAIN
QUARTERS.
SO MY QUESTION TO ALL OF YOU IS,
ON BEHALF OF THE INDIVIDUAL
ORGANIZATION THAT YOU REPRESENT,
ARE THERE PRAGMATIC AVENUES THAT
WE CAN FOLLOW TO HARNESS THE
STRENGTH OF YOUR RELATIONSHIP TO
THE OUTSIDE COMMUNITY THAT YOU
REPRESENT TO BE ABLE TO FOSTER
THE EDUCATIONAL INITIATIVE, AND
IF SO, HOW CAN WE AS A
COMMISSION ENGAGE WITH YOU OR
WEAVE THIS INTO OUR SET OF
RECOMMENDATIONS TO THE ADVISORY
COUNCIL THAT WILL BE THE
ULTIMATE OUTPUT OF THE WORK OF
THIS COMMISSION OVER THE NEXT
TWO YEARS?
SO I'M OPENING THE FLOOR TO
ANYBODY WHO'D LIKE TO RESPOND TO
THAT.
JUST RAISE YOUR HAND IF YOU'RE
READY TO SPEAK.
ANY TAKERS?
>> JAN, GO AHEAD, I CAN SEE.
>> THANK YOU.
I WANTED TO BRING UP THE TOPIC
RELATED TO HOW TO SUPPORT
TRAINEES, AND IN PARTICULAR, PRE
AND POSTDOCTORAL TRAINEES.
NAVBO, FOR INSTANCE, REALLY IS A
MEETING PLACE FOR THESE TRAINEES
AND WE REALLY UNDERSTAND A LOT
OF THE CHALLENGES AND ANXIETIES
THEY HAVE IN TERMS OF GETTING
THE TRANSITION TO INDEPENDENCE
AND SETTING UP THEIR LAB.
SOME OF THE ISSUES RELATED TO
HOW TRAINEES INTERACT WITH THE
NIH ARE RELATED TO THE FACT THAT
BECAUSE THERE'S A SMALLER
COLLECTION OF TRAINEES, IT WOULD
BE VERY CHALLENGING, FOR
INSTANCE, TO DEVELOP A TRAINING
GRANT FOCUSED ON LYMPHATIC
BIOLOGY AND, IN FACT, I DID A
SEARCH AND I DON'T THINK THERE'S
ANY TRAINING GRANT THAT HAS
LYMPHATIC IN THE TITLE.
T32s ARE CHALLENGING TO
OBTAIN.
I'M THE PI ON A T32 IN VASCULAR
BIOLOGY, AND I THINK THE
COMMISSION MAY WANT TO THINK
ABOUT WAYS THAT THE NIH CAN
CROSS INSTITUTIONS TO SUPPORT A
BROADER TRAINING INITIATIVE IN
LYMPHATIC BIOLOGY.
BEYOND EDUCATION, WE COULD HAVE
A LONG DISCUSSION ABOUT
TRANSINSTITUTION SUPPORT FOR
LYMPHATIC RESEARCH BUT I'LL SAVE
THAT FOR ANOTHER TIME.
>> THANKS, JAN.
JERRY, I SEE YOUR HAND IS UP.
>> O YES.
WELL, ACTUALLY JUST TO SPEAK TO
WHAT JAN JUST MENTIONED THERE
ACTUALLY IS GOING TO BE A
LYMPHATIC T32 AND TEXAS A & M
STARTING PRETTY SOON, I KNOW
HE'S GOTTEN THE AWARD NOTICE, SO
JUST WAITING FOR TO START.
BUT I WANTED TO SPEAK TO MORE
LIKE MEDICAL STUDENT EDUCATION,
BECAUSE MY UNDERSTANDING IS THAT
AROUND THE COUNTRY, WE'RE STILL
IN KIND OF THE WILD WEST OF HOW
MEDICAL STUDENTS LEARN ABOUT LIT
LYMPHATICS, WHAT SPECIFIC
CONDITIONS THEY LEARNED ABOUT.
I KNOW HERE AND MY INSTITUTION,
I ACTUALLY LEAD AN ENGAGED
LEARNING SESSION THAT LASTS A
FEW HOURS WITH STUDENTS AND WE
KIND OF BRANCH OFF INTO LIX FROM
THERE.
LYMPHATICS FROM THERE.
BUT I WOULD THINK THAT OUR
SOCIETIES IN GENERAL, WHETHER IT
BE OUR EDUCATION COMMITTEES OR
TRAINING COMMITTEES, PROBABLY
COULD BE A RESOURCE FOR MAYBE
HELPING DEVELOP SOME TYPE OF
CURRICULUM THAT COULD BE
STANDARDIZED ACROSS DIFFERENT
MEDICAL SCHOOLS.
>> THANK YOU.
ROBERT, I THINK YOU'RE NEXT.
>> WE FACE A REAL CHALLENGE WITH
POST ONCOLOGY TREATMENT IN
GENERAL.
FOR THE LONGEST TIME, WE THOUGHT
THAT THE MEDICAL HOME MODEL
WOULD BE EFFECTIVE IN A WAY TO
ENSURE THAT PATIENTS GOT
PERSONALIZED CARE, WHATEVER
THEIR NEEDS WERE, BUT
INCREASINGLY, PRIMARY CARE
PROVIDERS ARE ASKED TO DO MORE
AND MORE AND MORE YEAR AFTER
YEAR AFTER YEAR, AND THEY STA
STARTED REBELLING A LONG TIME
AGO, THAT THERE'S A LIMIT TO
WHAT THEY CAN ACTUALLY MANAGE.
ONCOLOGISTS OFTENTIMES CONTINUE
TO SEE PATIENTS BUT THEY'RE
REALLY NOT ATTENTIVE TO THEIR
REHABILITATION NEEDS, AND ONCE
ONCOLOGY GOT OUTSIDE OF THE
HOSPITAL, THE LINK BETWEEN REHAB
WAS BROKEN AS WELL.
SURVIVORSHIP PLANS STILL HAVE
NOT QUITE TAKEN ROUTE.
THERE'S A LOT OF CONFLICT AND
CONTROVERSY AS TO WHETHER
THEY'RE USEFUL.
SO I SORT OF FEEL LIKE RIGHT
NOW, THE MAIN HOPE IS TO EDUCATE
PATIENTS, BUT WE ALL CAN
APPRECIATE THAT THE MEDICAL
LITERACY CHALLENGES ARE IMMENSE,
AND SO IF WE CAN HAVE A GOAL TO
MAKE SURE THAT THE ELECTRONIC
HEALTH RECORD HAS THESE KINDS OF
PROMPTS FOR POST TREATMENT
SURVEILLANCE EMBEDDED IN THEM,
THAT CAN BE A CONSTANT REMINDER
FOR THE KIND OF CARE THESE
PATIENTS SHOULD BE GETTING,
ONGOING CONDITIONS THAT HAVE TO
BE LOOKED FOR, BUT RIGHT NOW I
THINK NO ONE HAS QUITE FIGURED
OUT HOW TO DO THIS.
>> RIGHT.
THANK YOU.
GREAT POINTS.
MIIKKA AND I THINK AFTER THAT,
WE HAVE EVANGELOS.
>> I CAN DEFINITELY AGREE WITH
WHAT HAS BEEN SAID.
FOR ISSVA, ALSO IT'S A HUGE
PROBLEM, THERE'S A NEED FOR
COURSES, VIDEOS, AND
INFORMATION, BOTH FOR YOUNG
PHYSICIANS COMING TO THE FIELD,
BUT ALSO IN MORE COMPLICATED
FIELDS, AND ALSO TO REACH THE
PATIENTS.
SO THERE'S A LOT OF NEED.
IF WE WANT TO DO ALL THIS AT
ONCE, IT'S GOING TO BE TOO MUCH
FOR US.
WE HAVE TO KIND OF START -- THAT
WE DECIDED AT LEAST TO MAKE A
PATIENT TASK FORCE WHICH WE
DIDN'T HAVE BEFORE, SO WE'LL GET
A NEW WEBSITE, MORE MODERN
WEBSITE, THIS IS SOMETHING THAT
WE'LL PROVIDE.
IN THE EUROPEAN NETWORK THAT I'M
CHAIRING THE VASCULAR, AND ALSO
WE DO THESE KIND OF EITHER SMALL
WEBEX WEBINARS OR OTHER TYPES OF
VIRTUAL MEETINGS BUT WE DO IT
SEVERAL TIMES, SINCE I'M
GENETICIST, I ALSO SEE THIS
FIELD OF 7,000 DISEASES THAT
COULD BE SOME KIND OF AN AREA
THAT WE COULD START TALKING
ABOUT THE RARE DISEASES, THEN
FROM THERE, THE MEDICAL STUDENTS
ESPECIALLY COULD KIND OF FIND
INFORMATION ON THE VARIOUS RARE
DISEASES, WHICH IS SOMETHING
THAT -- NOBODY CAN KNOW THEM
ALL.
YOU I ALSO THINK THAT'S
SOMETHING THAT AI COULD HELP IN
THE SENSE THAT IT COULD SUGGEST,
OF COURSE WE NEED THE PHYSICIAN
BEHIND IT, BUT IT HELPS NOT TO
FORGET EVENTUALLY A RARE DISEASE
THAT YOU DID NOT THINK ABOUT.
AND ESPECIALLY IF YOU ARE NOT
AWARE OF IT, YOU CAN'T THINK
ABOUT IT.
THAT'S ALL.
>> THANK YOU.
NEXT WE HAVE EVANGELOS.
>> I WILL SAY THAT I AGREE
DEFINITELY WITH THE OTHERS.
THIS IS -- I SAY FROM THE
NATIONAL SOCIETY OF LYMPHOLOGY,
THAT'S WHY WE HAVE A CON 16 CONL
DOCUMENT TO UNDERSTAND THE
SCREENING, THE DIAGNOSIS, THE
TREATMENT -- BUT THIS IS -- WE
NEED TO ESTABLISH -- TO
ESTABLISH EDUCATION.
THIS IS THE PROBLEM, OUR PROBLEM
IS THAT FROM THE MEDICAL SCHO
SCHOOLS, THEY DON'T KNOW -- I
DON'T SPEAK FOR THE GENETIC
BECAUSE IT'S VERY SPECIAL
THINGS, BUT THE VERY SIMPLE
THINGS FOR LYMPHATIC SYSTEM,
THEY DON'T KNOW ABOUT THAT.
SO AT THE END OF THIS, WE HAVE
NO EDUCATION, NO GOOD SCREENING,
NO DIAGNOSIS, NO GOOD TREATMENT,
SO THIS IS THAT I FEEL THAT -- I
THINK THAT WHAT WE NEED IS TO
CREATE ONE EDUCATION, ONE
WITH -- TO EDUCATE THE -- ALL --
LYMPHATIC SYSTEM FROM THE
MEDICAL SCHOOLS AND FROM
PHYSICAL THERAPY SCHOOLS,
FROM -- SCHOOLS, IN ORDER TO
UNDERSTAND WHICH IS THE PROBLEM.
THAT'S WHY GOOD OPPORTUNITY TO
ESTABLISH EDUCATION FOR
EVERYBODY FOR FUTURE ALL OVER
THE WORLD.
>> THANK YOU.
MIKE, I THINK YOU WERE NEXT.
>> THANK YOU, STAN.
I AGAIN AGREE WITH MUCH OF
WHAT'S BEEN SAID HERE.
I THINK FROM MY PERSPECTIVE,
WHAT WE HAVE DONE IS REALLY
FOCUSED ON EDUCATING THE PATIENT
WITH REGARD TO NOT ONLY THEIR
DISEASE BUT ALSO THE IMPACT OF
SCIENCE ON THEIR HEALTH.
AND I THINK THAT WE HAVE USED AI
IN ORDER TO SORT OF DRAFT LAY
SUMMARIES OF PRESENTATIONS,
SCIENTIFIC PRESENTATIONS OF
IMPORTANT ARTICLES THAT HAVE
BEEN PUBLISHED, AND AGAIN, HAVE
UTILIZED THE AUTHORS AND OTHER
MEDICAL AND SCIENCE PROFESSI
PROFESSIONALS IN ORDER TO EDIT
THOSE.
SO THAT'S BEEN WELL RECEIVED
WITHIN THE PATIENT COMMUNITY.
SO THAT'S CERTAINLY SOMETHING TO
CONSIDER.
WITH REGARD TO MEDICAL STUDENT
ENGAGEMENT, THERE ARE INTEREST
GROUPS, MEDICAL STUDENT INTEREST
GROUPS THAT ARE ARISING FOCUSED
ON RARE DISEASES.
SO CERTAINLY WE HAVE PLUGGED
INTO A NUMBER OF THOSE THAT HAVE
DEVELOPED OVER THE COURSE OF THE
LAST SEVERAL YEARS WITH REGARD
TO EDUCATING THEM ON RARE
LYMPHATIC DISEASES.
SO AGAIN, THERE IS A FOUNDATION
IN ORDER TO SORT OF REACH
TRAINEES THAT CERTAINLY ARE
INTERESTED.
IT DOESN'T REACH ALL OF THEM,
BUT AGAIN, I THINK IT'S A GREAT
PLACE TO THINK ABOUT STARTING
WITH REGARD TO EDUCATING NEXT
GENERATION ON RARE LYMPHATIC
DISEASES.
THANK YOU.
>> WONDERFUL.
MELISSA.
>> SO I JUST DID A LITTLE
GOOGLING, AND I'M NOT A
PHYSICIAN, I'M A PH.D.
I'VE OFFERED A COURSE IN
LYMPHATICS FOR GRADUATE STUDENTS
HERE, BUT I THINK TO MOVE IT AND
MAKE IT MORE MANDATORY IN
MEDICAL EDUCATION, HOW CAN WE
CONTACT LIKE THE U.S. M LE., THE
CREDENTIALING -- THE BOARD EXAM
PEOPLE?
WE HAVE A WEALTH OF PHYSICIANS
AND PHYSICIAN SCIENTISTS HERE,
AND WITHIN THE LYMPHATIC
COMMUNITY THAT COULD PERHAPS PUT
TOGETHER A LIST OF REQUIRED
QUESTIONS OR SOMETHING LIKE THAT
FOR BOARD EXAMS, FOR MDs,
PTs, OTs, KIND OF PUSH IT
FROM THE BACK END.
SO THAT SOMETHING HAS TO BE
TAUGHT.
SOMETHING HAS TO BE INCLUDED IN
THE CURRICULUM FOR THEM TO PASS
THE BOARD EXAMS.
I DON'T KNOW IF THAT'S FEASIBLE,
BUT TO ME, FROM THE OUTSIDE
LOOKING IN, IT SEEMS LIKE AN
APPROACH THAT COULD BE TAKEN.
>> I THINK WE'RE GOING TO BE
TOUCHING ON SOME OF THAT THIS
AFTERNOON AS WELL, WITH THE
COMPOSITION OF THE AFTERNOON
PANEL.
I THINK, FEDOR, YOU WERE NEXT.
>> THANKS, STAN.
YOU'RE ASKING FOR PRAGMATIC WAYS
TO DO THIS, AND I THINK YOU JUST
DID THAT.
BY CREATING THIS PANEL.
SO, SO MANY DIFFERENT SOCIETIES
AND GROUPS, EACH OF US HAVE OUR
UNIQUE INTERESTS, AND WHAT WOULD
BE, I THINK, REALLY INSTRUMENTAL
TO THE FIELD IS IF NIH CAN FUND
THIS ONGOING COMMUNICATION WITH
ALL OF US I AND THE PURPOSE IS O
HARMONIZE OUR EFFORTS.
SO WHILE WE'RE ADDRESSING THE
INDIVIDUAL GOALS AND NEEDS, WE
ALSO COORDINATE IN THIS EFFORT
SO THAT WE'LL BE MORE PRODUCTIVE
WHENEVER WE CAN COLLABORATE.
THANKS.
>> FEDOR, SINCE YOU'RE SPEAKING,
IF I COULD INTERJECT MY OWN
PERSONAL QUESTION AND MARK MAYBE
ALSO ON BEHALF OF THE AMERICAN
HEART ASSOCIATION, YOU BOTH
REPRESENT ORGANIZATIONS THAT I
PARTICIPATE IN AS PART OF MY
SPECIALTY TRAINING AND YET I
KNOW THAT MOST OF THE PEOPLE TO
MY LEFT AND RIGHT WHEN I GO TO
MEETINGS ARE NOT QUITE SO
INTERESTED OR FOCUSED ON THE
LYMPHATIC ELEMENT.
ARE THERE MECHANISMS IN WHICH WE
CAN ENGAGE BROADER PHYSICIAN
AUDIENCE GROUPS Q WITHIN THE
SPECIALTY SOCIETIES AND ALSO THE
GENERAL SOCIETIES THAT WILL HELP
US TO ENTRAIN INDIVIDUALS INTO
THIS FOCUS AREA WHICH WILL IN
TURN PROMOTE EDUCATION WHICH IS
ALONG THE LINES, MELISSA, THAT
YOU WERE ASKING ABOUT.
>> I'LL START, THEN.
STAN, THANKS.
I THINK YOU'RE EXACTLY RIGHT.
AND THE WAY I WOULD THINK WILL
BE HELPFUL TO ADDRESS THIS NEED
IS TO INTRODUCE THE PANELS AND
TOPICS ON THOSE SOCIETY MEETINGS
THAT ARE MORE BROADLY ADDRESSING
THE INVOLVEMENT OF LYMPHATIC
SYSTEM IN OTHER CONDITIONS.
SO YOU ATTRACT PEOPLE BY THEIR
SPECIALTIES AND INTERESTS WHO
ARE -- MAY NOT BE WELL EDUCATED
ABOUT THE ROLE OF LYMPHATICS,
BUT BY CREATING THAT DIRECTION,
WHERE THE ROLE OF THE LYMPHATIC
SYSTEM IS INCLUDED IN THOSE
DISCUSSIONS THAT MAY HELP THEM
TO, OVER TIME, DEVELOP THAT
INTEREST.
>> EXCELLENT.
MARK, ARE YOU THERE?
DO YOU WANT TO COMMENT?
>> YES.
HOPE YOU CAN HEAR ME.
>> YEP.
>> OKAY.
SO I WANTED TO SUGGEST THIS FROM
TWO PERSPECTIVES.
I AM A SPECIALIST WHO SEES
PATIENTS INCLUDING MANY PATIENTS
WITH LYMPHATIC DISORDERS.
-- AN AREA THAT HAS NOT REALLY
RECEIVED MUCH RECOGNITION AMONG
OUR -- INCLUDING THOSE WHO ARE
GENERAL INTERNISTS, PRIMARY CARE
PHYSICIANS, -- HAS RECEIVED VERY
LITTLE RECOGNITION IN TERMS OF
EDUCATION, AND -- IN THESE
PATIENTS IN THE CLINIC, TRAINING
FELLOWS AND OTHERS, THEY M KOL
IN VERY UNAWARE OF LYMPHADEMA,
HOW TO MAKE THE DIAGNOSIS AND
HAVE VERY LITTLE EDUCATION IN
TERMS OF TREATMENT ALTERNATIVES.
THAT REALLY NEED TO BEGIN AT THE
MEDICAL SCHOOL LEVEL BUT REALLY
CAN BEGIN -- AND THEN IN THE,
YOU KNOW, POST RESIDENCY AREA,
EDUCATING THEM AND REMINDING
THEM ABOUT LYMPHADEMA.
I JUST THINK IT'S NOT BEING
RECOGNIZED AT ALL, BUT IT'S --
IT'S REALLY TOWARDS THE END OF
THE ROAD AND NOT AT THE
BEGINNING, WHERE IT SHOULD BE.
SO IT'S REALLY, REALLY A MAJOR
ISSUE.
I ACKNOWLEDGE THIS UP FRONT, I
WOULD SAY LYMPHATIC DISEASES ARE
FAR FROM OUR EMPHASIS, IT HASN'T
BEEN -- DES IN GENERAL HAVE
REALLY TAKEN A MUCH GREATER
EMPHASIS WITHIN THE
ORGANIZATION, AND THERE ARE
OPPORTUNITIES -- DISEASE, IN
TERMS OF PRESENTING SCIENCE AS
WELL AS OFFERING -- EVERY
SPRING, THE AMERICAN HEART
ASSOCIATION HAS ITS VASCULAR
DISCOVERY MEETING.
-- PLENARY SESSIONS, BREAKOUT
SESSIONS ON DIFFERENT -- ONE
EXCELLENT AREA TO BRING IN FOLKS
INTERESTED IN VASCULAR AND
LYMPHATIC DISEASES.
PART OF THAT MEETING ON
LYMPHATIC DISEASES.
COULD BE A BREAKOUT, COULD BE
PLENARY.
BUT I SEE THAT AS A REAL
OPPORTUNITY -- FORWARD WITH THE
PROGRAM PLANNERS.
THE AMERICAN HEART ASSOCIATION
REALLY OFFERS A LOT OF GRANTS
FOR PREDOCTORAL FELLOWS,
POSTDOCTORAL -- ESTABLISHED
INVESTIGATORS, AND I WOULD
SUBMIT THAT VERY FEW
APPLICATIONS, IF ANY, DEAL WITH
LYMPHATIC -- FOR RESEARCH
INITIATIVES BUT IT'S PROBABLY
NOT WELL-KNOWN TO THOSE DOING
RESEARCH IN THAT AREA.
>> THANK YOU, MARK.
NEXT I HAVE CARRIE, AND AFTER
THAT, GUILLERMO AND JOEL.
>> THANKS.
I WANT TO REITERATE THAT
EDUCATION IS SUCH AN ISSUE.
I ACTUALLY TRAIN A LOT OF
FELLOWS AND RESIDENTS IN MY JOB,
AND ONE OF THE QUESTIONS I ASK
THEM IS HOW MUCH HAVE YOU
LEARNED ABOUT LYMPHATICS IN YOUR
MEDICAL SCHOOL EDUCATION, AND
USUALLY IT'S NO MORE THAN AN
HOUR, AND IF SO, IT'S USUALLY
THE THORACIC DUCT AND NOT THE
DISEASES.
IN COMPARISON BE, WHICH I THINK
MAY BE A MODEL TO USE -- SCHOOLS
SPEND TWO WEEKS ON LYMPHATIC
DISEASES AND LYMPHADEMA, AND
THEY HAVE A REALLY WELL TRAINED
OUT PLAN TO DISCUSS THIS WITH
EVERYBODY.
I'D ALSO LIKE TO TALK ABOUT HOW
SUBSPECIALTIES ARE VERY SILOED
AND NOT COMMUNICATING WITH EACH
OTHER.
I'M AN OB-GYN, I INTERACT VERY
CLOSELY WITH MATERNAL FETAL
MEDICINE WHO SEES CONGENITAL
LYMPHATIC ANOMALIES WHICH
PRESENT ABOUT 80% IN UTERO AND
JUST TO REALIZE ONLY A THIRD OF
THOSE ARE ACTUALLY BORN AND GO
ON TO LIFE, SO IT'S ACTUALLY
MUCH MORE COMMON THAN PEOPLE
REALIZE.
IN CLINICAL CARE.
BUT I ACTUALLY HAVE BEEN TALKING
TO THEM, AND THEY DON'T
UNDERSTAND THE LYMPHATIC SYSTEM
AND THEY DON'T UNDERSTAND THIS.
THEN THE OTHER ISSUE BECOMES,
NOW THEY HAVE A LYMPHATIC
ANOMALY, THEY DO NOT GO AHEAD
AND ADVISE THEIR PATIENTS THAT
THERE'S VASCULAR ANOMALY GROUPS
OR CLINICS THAT CAN SEE THEIR
PATIENTS.
AND SO I THINK THERE'S ALSO A
NEED TO BRIDGE ALL THESE
SPECIALTIES THAT ARE SEEING
THESE PATIENTS AND BEING ABLE TO
SHARE COMMUNICATIONS BECAUSE
THEY ALSO DON'T REALIZE THERE'S
TREATMENT OPTIONS AND THEY HAVE
DIFFERENT BIASES AS WELL.
>> THANK YOU, THAT'S GREAT.
GEE YAG
>> I DON'T KNOW WHY MY CAMERA IS
BLOCKED.
SO YES, I THINK WE ALL AGREE
THAT LYMPHATICS ARE QUITE
IGNORED IN THE MEDICAL FIELD,
EDUCATION IS BAD, AND WE NEED TO
INCREASE THE NUMBER OF PEOPLE
WORKING IN THIS AREA.
BUT I THINK YOU GUYS, SOME OF
YOU KNOW ME, IF I HAVE BEEN
PREACHING ABOUT THIS FOR A LONG
TIME, BUT EVEN MANY OF YOU WHICH
ARE CLINICIANS, YOU TALK ABOUT
LYMPHATIC MALFORMATIONS, YOU
ONLY TALK ABOUT LYMPHADEMA OR
DISEASES LIKE THAT.
AND AGAIN, I THINK WE HAVE
PLENTY OF EVIDENCE TO ARGUE THAT
THERE ARE MANY OTHER THINGS THAT
SHOULD BE UNDER THAT UMBRELLA OF
DISEASES CAUSED BY LYMPHATIC
MALFUNCTION, AND I THINK IT'S ON
ALL OF YOU TO START TALKING
ABOUT THAT WHEN YOU START
TALKING ABOUT LYMPHATICS,
BECAUSE THAT WOULD BRING MORE
SUBSPECIALTIES TO THE FIELD,
COULD BECOME LYMPHATIC
MALFUNCTION, BUT ACTUALLY MORE
STUDENTS, MORE PH.D.s TO BRING
INTO THIS AREA BECAUSE THEY
REALIZE THERE IS MUCH MO TO THIS
THAN -- BEYOND LYMPHADEMA.
SO WHICH OBVIOUSLY IS EXTREMELY
IMPORTANT, BUT I THINK THAT IS
SOMETHING THAT WE REALLY NEED
ALL TO BE AGREED UPON.
THAT THERE IS MUCH MORE TO BE
DONE ABOUT LYMPHATICS THAT SO
FAR IS POORLY DISCUSSED, POORLY
EXPLORED AND POORLY RESEARCHED,
AND I'M SERIOUSLY CONVINCED
WE'LL ATTRACT MORE TRAINING
GRANTS, MORE COLLABORATIONS AND
MANY OTHER AGENCIES LIKE
AMERICAN HEART ASSOCIATION, FOR
EXAMPLE, THAT COULD MEAN MORE
INTERESTED ON THIS TOPIC.
THANK YOU.
>> THANKS, GE GUILLERMO.
JOEL, PAULA, MAX, BEN.
JUST SO YOU KNOW I'M SEEING YOUR
HAND.
JOEL.
I THINK YOU'RE MUTED, JOEL.
>> ONE OF THE THINGS THAT'S BEEN
VERY USEFUL IN TERMS OF
EXPANDING OUR KNOWLEDGE OF LAM
AND TOUR R TUBEROUS SCLEROSUS, E
CASE OF THE AMERICAN THORACIC
SOCIETY, WHAT THEY'VE DONE IS
HAVE PATIENT ORGANIZATIONS BE
PART OF THE ORGANIZATION OF THE
SOCIETY.
SO EACH SATURDAY RECENTLY, THE
PATIENT ORGANIZATIONS WILL
DISCUSS DIFFERENT MATTERS THAT
ARE RELEVANT.
SO SOME CASES, IT'S BEEN LAM,
TUBEROUS SCLEROSIS, BUT I THINK
THERE ARE OTHER LYMPHATIC
DISEASES THAT COULD GET INVOLVED
THERE.
I THINK IT'S A MATTER OF PUSHING
THEM TO DO SO.
THERE'S A SESSION OF VARIOUS
ORGANIZATIONS WITH THEIR OWN
SYMPOSIUM, AGAIN, THIS IS USEFUL
IN TERMS OF ORGANIZATIONS, AND
ALSO IN TERMS OF EDUCATIONAL
INFORMATION.
AND WITH REGARD TO THE NHLBI,
STAN, AS YOU ARE AWARE, THE
NHLBI HAS A TRANS-NIH
ORGANIZATION THAT ESSENTIALLY
TALKS TO PEOPLE IN VARIOUS
INSTITUTES IN TERMS OF WHAT THEY
CAN DO, IN TERMS OF GRANTS, ET
CETERA, SO THAT IS AVAILABLE,
AND I THINK IT'S MAYBE A LITTLE
BIT MORE PUSHING THEM TO GET IT,
BUT AGAIN, I THINK LEARN IS
TRYING TO DO THAT AS WELL.
SO THERE'S A LOT OUT THERE.
I THINK IT'S A MATTER OF GETTING
PEOPLE INVOLVED WITH THEIR
SPECIALTY ORGANIZATIONS TO GET
THEM TO PARTICIPATE.
>> THANKS, JOEL.
PAULA, I THINK YOU'RE NEXT AND
THEN MAX.
>> PERFECT.
ACTUALLY, JOEL, YOU KIND OF LED
INTO ONE OF MY QUESTIONS I
WANTED TO THROW OUT TO THE WHOLE
GROUP.
TO JUST UNDERSTAND FROM YOUR
ADVANTAGE TAVANTAGEPOINTS TO IN.
I WAS WONDERING IF THERE'S
ANYTHING THAT JUST KIND OF COMES
TO LIGHT WHERE YOU FEEL LIKE IT
ONE OF THE GREATER SUCCESSES
THAT MAYBE -- EITHER BY
LOGISTICS OF HOW IT WAS DONE OR
SOMETHING THAT JUST
PRAGMATICALLY LOOKING AT.
>> WELL, THIS IS JAN ON BEHALF
OF NAVBO.
I WOULD SAY TRAVEL GRANTS.
AND WE DO THIS IN PARTNERSHIP
WITH LEARN.
AND IT'S AN AMAZING WAY TO MAKE
TRAINEES FEEL PART OF THE FIELD,
RECOGNIZED, THE RESOURCES TO GO
TO MEETINGS, SO WE'VE SEEN BIG
SUCCESSES IN EXPANDING THE FIELD
AND ENGAGING TRAINEES THROUGH
TRAVEL GRANTS.
>> THIS IS JERRY.
I CAN SAY WE DO THE SAME THING.
IN FACT, WE PARTNER WITH NAVBO
QUITE OFTEN TO SUPPORT SPEAKERS
AT THE LYMPHATIC FORUM AND ALSO
TRAVEL GRANTS AS WELL.
>> GREAT.
>> JUST ON THAT POINT, BECAUSE
THAT WAS E ESSENTIALLY WHAT I WS
GOING TO RAISE.
I THINK THE GREAT SUCCESS HAS
BEEN THE LEARN POSTDOCTORAL
FELLOWSHIPS.
AS WELL AS TRAVEL GRANTS, THEY
HAVE PROMOTED MOVEMENT OF
SCIENTISTS, INTERNATIONALLY AND
A LOT OF MOVEMENT IN THE U.S.
I WAS VERY LUCKY TO HAVE A
POSTDOC EARLY ON WHO GOT ONE OF
THOSE FELLOWSHIPS.
SHE'S NOW A LECTURER AND RUNS
HER OWN LAB AND EDUCATES MED
STUDENTS AND BIOMEDICAL STUDENTS
IN LYMPHATIC BIOLOGY.
SO I THINK THOSE THINGS THAT
BOLSTER CAREER PATHWAYS REALLY
EARLY ON ARE JUST ABSOLUTELY
CRITICAL, AND THAT WAS A BIG
SUCCESS STORY, I THINK.
>> WONDERFUL.
>> MAX, I THINK YOU'RE NEXT.
>> THANK YOU.
A LOT OF THINGS I WOULD LIKE TO
TALK HAVE ALREADY BEEN TALKED
ABOUT SO I WILL TOUCH ABOUT THE
STUDENT EDUCATION AGAIN.
SO THE U.S. SYSTEM IS
TRADITIONALLY VERY DECENTRALIZED
IN EVERYTHING.
EVERY STATE, EVERY UNIVERSITY.
ANYBODY KNOWS ANY WAY FOR US TO
CREATE THE NATIONAL CURRICULUM?
IS THERE SUCH PRECEDENCE, WHERE
WE CAN RECOMMEND UNIVERSITIES
AND RECOMMEND THE -- TO FIND THE
PEOPLE THAT ARE GOING TO TEACH
IT, THAT'S ANOTHER BIG DEAL
RIGHT THERE.
WE CAN COME WITH CURRICULUM BUT
THEN WHO IS GOING TO DELIVER
THIS CURRICULUM?
BUT AT LEAST AS A START.
SO IF WE COME WITH SOME TIME OF
LECTURE SCHEDULE, TOPICS, AND
MAYBE WE AS A PEOPLE THAT ARE
INVOLVED WITH THAT CAN HELP THE
LOCAL PLACES, UNIVERSITIES,
EDUCATION COMMITTEES TO
INTRODUCE IT, CREATE IT, GIVE
THE TALKS MAYBE ONLINE.
RIGHT NOW ZOOM IS SUCH A POWER
IN THIS WORLD.
SO -- STAN, YOU PROBABLY KNOW
THAT BECAUSE YOU PUT A LOT OF
EFFORT INTO THIS, SO IS THERE
ANY WAY TO SPREAD THE -- CREATE
THE CURRICULUM BUT HOW CAN WE
SPREAD IT OUT?
>> SO ABOUT 10 OR 15 YEARS AGO,
TO TRY TO ANSWER THE QUESTION
I'LL TELL YOU THAT I WAS INVITED
TO THE ASSOCIATION OF AMERICAN
MEDICAL COLLEGES, WHICH IS ONE
ORGANIZATION THAT OVERSEES KIND
OF CURRICULAR ISSUES, TALKING
ABOUT EVOLVING CURRICULUM BASED
UPON NEW KNOWLEDGE AND WE USED
LYMPHATICS AS A PARADIGM FOR
THAT, AND THERE WERE A LOT OF
DISCUSSIONS THAT SURROUNDED
THAT, AND THE BOTTOM LINE IS
THAT WE LEARNED THAT THE MAJOR
WAY THAT CURRICULA EVOLVE ARE IN
RELATIONSHIP TO CERTIFYING
EXAMINATIONS SUCH THAT WHEN IN
MEDICAL SCHOOL, ACKNOWLEDGES
THAT QUESTIONS WILL BE ASKED ON
THE CERTIFYING EXAM, THEY WANT
THEIR STUDENTS TO DO WELL AND
THEY WILL THEN INCORPORATE THAT
IN THE CURRICULUM, AND THAT
HAPPENS MOST CONSISTENTLY IN THE
STATE SUPPORTED SCHOOLS AND THEN
AS YOU MOVE OUT TO PRIVATE
INSTITUTIONS, IT'S MUCH MORE
ELECTIVE, ABOUT HOW STRUCTURED
THE CURRICULUM IS.
I THINK THE BEST THAT WE CAN
HOPE FOR, IF WE DECIDE AS A
COMMISSION THAT WE WANT TO DO
THIS, IS TO TRY TO CREATE A
CURRICULAR PACKAGE THAT COULD BE
MARKETED TO SAY LOOK, WE WANT TO
PUT THIS AT YOUR DISPOSAL,
PLEASE USE IT, WE THINK IT'S
IMPORTANT TO EDUCATE YOUR
STUDENTS AND THEN IT'S UP TO THE
INDIVIDUAL SCHOOLS, I THINK, TO
EITHER ADOPT IT OR NOT AND FIND
THE PEOPLE THAT WOULD BE WILLING
TO DELIVER IT WITHIN THEIR OWN
INSTITUTION.
>> OF COURSE WE'VE ALREADY ASKED
THIS QUESTION, CAN WE ASK THEM
TO INTRODUCE QUESTIONS AND -- I
DON'T KNOW, WE NEVER THOUGHT
ABOUT -- SOUNDS LIKE IT'S THE
RIGHT THING TO DO.
>> YEAH, SO AGAIN, WH WHAT I WAS
TOLD A DECADE OR MORE AGO IS
THAT YOU NEED TO GET PEOPLE ON
THE COMMITTEES THAT ARE WRITING
THE EXAMS SO THAT THEY WILL
WRITE THE QUESTIONS THAT WILL
THEN MOTIVATE THE SCHOOLS TO
TEACH IT.
IT'S A VERY CIRCULAR ISSUE.
I DON'T THINK THAT -- I DON'T
KNOW THAT ANY OF THESE
CERTIFYING EXAMS HAVE MANDATED
CONTENT.
I THINK IT REALLY BASED ON
COMMITTEES THAT ARE BROUGHT
TOGETHER EITHER FOR SPECIALTY
EXAMS -- I THINK IT'S A QUESTION
OF CONTINUOUS PUSHING,
CONTINUOUS DISCUSSION AND
HOPEFULLY I THINK -- AGAIN, I
THINK SOME OF OUR PANEL THIS
AFTERNOON WILL TOUCH A BIT ON
THIS, ON THE EDUCATIONAL ISSUE,
BUT CERTAINLY THINGS THAT WE
NEED TO CARRY FORWARD.
SINCE I DON'T HAVE -- SEE A HAND
UP, I'M GOING TO BRING UP
ANOTHER QUESTION FROM A VERY
PERSONAL PERSPECTIVE, BECAUSE I
THINK IT TOUCHES ON WHAT WE'VE
BEEN TALKING ON THIS MORNING.
I PERSONALLY BELIEVE THAT -- OF
COURSE WE WANT TO EDUCATE
MEDICAL STUDENTS SO THAT THEY
BECOME KNOWLEDGEABLE CLINICIANS
OR RESEARCHERS IN THE CASE OF
SCIENTIFIC DISCIPLINES WHEN THEY
GO OUT INTO THEIR OWN CAREERS,
BUT I PERCEIVE A REAL PROBLEM
INSOFAR AS WE HAVE A CADRE OF
INDIVIDUALS PRACTICING MEDICINE
IN THE UNITED STATES WHO WILL BE
IN PLACE FOR THE NEXT 20 OR 30
YEARS WHO ARE BATHED IN A SEA OF
IGNORANCE REGARDING THIS
SITUATION AND NO FORMAL PLACE IN
WHICH THEY HAVE TO BE ENCOURAGED
TO LEARN IT, SO SPEAKING TO
THAT, I WANT TO RECOUNT A
PERSONAL EXPERIENCE AGAIN FROM A
NUMBER OF YEARS AGO.
I HAD THE OPPORTUNITY TO PUT
TOGETHER A SYMPOSIUM AT ONE OF
THE NATIONAL MEETINGS OF THE
AMERICAN HEART ASSOCIATION ON
LYMPHATIC BIOLOGY AND MEDICINE,
AND WE PUT TOGETHER A VERY NICE
PANEL, THERE WERE
REPRESENTATIVES FROM AT.
TELLO'S
LABORATORY, WORKING ON LYMPHATIC
VASCULATURE, AND WE REALLY HAD A
VERY ROBUST SET OF TOPICS TO
PRESENT TO THE AUDIENCE, AND BY
COUNT, THERE WERE SIX PEOPLE IN
THE ROOM THAT SEATED 400.
SO THE QUESTION IS, AGAIN TO THE
INDIVIDUALS HERE REPRESENTING
FOUNDATIONS AND OTHER SOCIETIES,
HOW DO WE NOT ONLY CREATE
OPPORTUNITIES BUT HOW DO WE
MARKET THIS APPROPRIATELY AND
CREATE ENTICING AVENUES TO
EDUCATE A PUBLIC THAT DOESN'T
KNOW THEY WANT TO BE EDUCATED
BUT REALLY NEEDS TO BE?
ANY TAKERS ON THAT?
>> I CAN TALK ON THAT.
I HAD THE OPPORTUNITY YEARS AGO
TO GO TO ITALY AND PARMA WITH
THE BIRTH MARKS FOUNDATION AND
REALLY THE POINT OF THAT WAS
ACTUALLY TO EDUCATE ACTIVE
CLINICIANS BROADLY ACROSS THE
WORLD AS TO THESE CONDITIONS.
SO I THINK HAVING AN OPPORTUNITY
OR A SYSTEM THAT CAN ACTUALLY GO
OUT WITH CMEs SO THAT PEOPLE
AREN'T JUST WATCHING A VIDEO AND
TRYING TO DO QUESTIONS AT THE
END, SOMETHING THAT'S MUCH MORE
INTERACTIVE AT DIFFERENT
REGIONAL CENTERS.
I THINK THERE WERE CLINICIANS
FROM ALL DIFFERENT BACKGROUNDS
AND THEY HAD NEVER HEARD ABOUT
THE LYMPHATICS AND TREATMENTS
AND GENETICS AND OPTIONS.
AND SO I THINK THAT'S SOMETHING
THAT FOUNDATIONS AND
ORGANIZATIONS CAN ACTUALLY DO AS
WELL, AND I THINK AS I SAID, THE
BIRTH MARKS FOUNDATION DOES THIS
AS PART OF THEIR AVENUE AND THEY
DO DIFFERENT LOCATIONS
THROUGHOUT THE WORLD EVERY YEAR.
I THINK IT NEEDS TO BE MUCH MORE
OF AN ORGANIZED TYPE OF SYSTEM.
>> RIGHT.
JUST TO RESPOND TO THAT, CARRIE
WEE A COMMISSION THAT'S GOING TO
MAKE RECOMMENDATIONS TO THE
ADVISORY COUNCIL, WHAT CAN WE
RECOMMEND THAT WOULD MAKE NIH A
VIBRANT PARTNER IN THAT KIND OF
ACTIVITY?
ANY IDEAS?
OR ANYBODY ON THE PANEL?
>> I MEAN, I THINK -- IS THERE
LIKE AN R13 FOR A SINGLE
MEETING.
IS THERE SOME TYPE OF FUNDING
SOURCE TO SUPPORT SOME TYPE OF
EDUCATION THAT GOES AROUND THE
COUNTRY, ESPECIALLY IN BIG
CENTERS TO EDUCATE CLINICIANS?
I DON'T KNOW IF THAT'S A FUNDING
MECHANISM RIGHT NOW, BUT I THINK
IT'S SOMETHING LIKE AN R13
THAT'S REPETITIVE FOR YEARS FOR
SOMETHING TO GO OUT.
MAYBE.
>> SELEN, I THINK MAYBE YOU'RE
RESPONDING TO THAT POSSIBLY?
>> NOT NECESSARILY, BUT R13s
ARE FOR -- THAT'S THE MECHANISM
THAT GIVES -- FUNDS THE
SCIENTIFIC MEETINGS, NOT
NECESSARILY EDUCATION.
I'LL ASK ANOTHER QUESTION WHEN
MY TURN COMES.
>> I'LL COME BACK TO YOU.
I THINK THERE'S JOEL AND MIKE.
>> MAY I INTERJECT AS PART OF
THE NIH, ACTUALLY, STAN, WITH
YOUR SORT OF WITH THE
INSPIRATION, WE WENT ON AND MADE
SURE THAT NO MATTER WHAT THE
TOPIC OF THE WORKSHOP THAT WE'RE
ORGANIZING, WE WOULD HAVE ONE
TALK AT LEAST ABOUT LYMPHATICS.
AND THAT HAD A VERY INTERESTING
EFFECT, BECAUSE IT WASN'T THAT
PEOPLE CAME THERE TO HEAR ABOUT
LYMPHATICS, BUT ANY TIME THEY
DID, THEY GOT INSPIRED.
THEY MADE CONNECTION THAT THEY
DIDN'T EVEN KNOW THEY COULD
MAKE, RIGHT?
SO IT A HUGE EFFORT TO ORGANIZE
SOMETHING ABOUT LYMPHATICS, BUT
YOU ARE PREACHING TO THE CHOIR.
SO CAN YOU PREACH TO THE ONES
WHO ARE NOT EVEN AWARE THAT THEY
WILL BECOME EXTREMELY INTERESTED
IN THIS?
SO THIS IS THE WAY WE BASICALLY
MET SOME OF YOU, BY INVITING TO
YOU GIVE A TALK IN SOME WORKSHOP
THAT NORMALLY YOU WOULDN'T THINK
RELATED TO LYMPHATICS, BUT YOU
MAKE THAT CONNECTION, AND THAT
COMES BACK ALSO TO GE G GE THE T
THIS IS AN UNDERLYING CONDITION
FOR MANY SPECIALTIES.
SO HAVING SOMEHOW MAYBE -- I
DON'T KNOW, SPONSORING A PERSON
FROM THE LYMPHATIC COMMUNITY TO
ATTEND MEETINGS THAT ARE NOT
NECESSARILY ABOUT LYMPHATICS BUT
THEY WOULD INTERSECT WITH THEIR
SPECIALTY, I THINK WOULD BE VERY
IMPORTANT.
JUST AN IDEA.
>> THAT'S A GREAT IDEA.
JOEL, I THINK YOU WERE NEXT, AND
THEN MIKE, THEN PAULA.
>> SO ONE OF THE THINGS THAT
WE'RE NOT DISCUSSING FOR PATIENT
VOICE, SO IF YOU LOOK AT A
NUMBER OF THE ORGANIZATIONS THAT
HAVE BEEN INVOLVED IN TERMS OF
LYMPHATICS OR IN MY CASE IN
TERMS OF LAM, IT'S THE PATIENTS
THAT HAVE USED ADVOCACY TO GET
SOMEONE TO BE INVOLVED WITH
THEIR DISEASE.
SO WHEN IT STARTED IN LAM, THERE
WERE NINE PATIENTS IDENTIFIED IN
THE U.S.
THERE ARE 4,000 NOW.
IT'S ALL DUE TO THE FACT THAT A
PATIENT ESSENTIALLY DECIDED HER
DAUGHTER HAD TO BE TREATED.
IT HELPED THAT YOU CAN FIND
SOMEBODY TO DO THAT, AND AS YOU
KNOW FROM EVERYTHING THAT'S BEEN
DONE WITH THE ARTICLE ON
LYMPHADEMA, FOR EXAMPLE, YEAH,
LYMPHADEMA, IS YOU HAVE TO HAVE
SOMEBODY INVOLVED, AND AS FAR AS
GETTING QUESTIONS ON EXAMPLES,
THE SAME THING, WE FOUND
SOMEBODY WHO IS WRITING VARIOUS
EXAMS, THEY'RE KNOWN, AND THEN
WHAT YOU HAVE TO DO IS EXPLAIN
WHY IT'S IMPORTANT TO BE ON THE
EXAM.
AND I REMEMBER WALKING BY A TALK
AT THE CHES MEETING AND IT WAS A
BEAUTIFUL QUESTION ON WHAT WAS
WRONG WITH THIS PERSON.
AND THEY SHOWED THE CYST, THEY
SHOWED LYMPHATICS AND THEY
SHOWED THE KIDNEY.
YOU GOT YOUR ANSWER THAT YOU
WANTED.
THE FDA NOW DOES THAT.
I WAS IN A MEETING WHERE THE
PATIENTS WERE PRESENTING WHAT
THEIR PROBLEMS WERE TO THE FDA,
AND IF THE FDA KNOWS ABOUT IT IN
TERMS OF APPROVAL, THEY'RE GOING
TO LOOK FOR DRUGS THAT DO WHAT
YOU WANT THEM TO DO.
>> GREAT, GREAT.
SO I THINK MIKE, THEN MIIKKA,
THEN ROBERT.
>> SO I'LL JUST SAY I AGREE WITH
JOEL ON THIS.
I THINK MANY OF THE SUGGESTIONS
HE MADE, I WAS GOING TO MAKE.
I WILL SAY FROM A PRACTICAL
PERSPECTIVE, ONE OF THE THINGS
THAT HAS HAPPENED IN THE
AMERICAN SOCIETY FOR PEDIATRIC
HEMATOLOGY/ONCOLOGY IS THAT
WE'VE CREATED AN INTEREST GROUP
FOR VASCULAR ANOMALIES.
IT BASICALLY INVITES PEOPLE, YOU
KNOW, INDIVIDUALS INTERESTED IN
KNOWING MORE ABOUT THESE
DISEASES, HAS A MESSAGE FORUM
WHERE YOU CAN ANSWER SPECIFIC
DISEASE MANAGEMENT DISEASE --
DISEASE AND MANAGEMENT QUESTIONS
POSED BY PHYSICIANS AND
CLINICIANS, AND THEY'VE BEEN
REALLY INSTRUMENTAL IN HELPING
DEVELOP OR ORGANIZING
PRESENTATIONS AT NATIONAL
MEETINGS, NOT ONLY INCLUDING
ASBO BUT MORE RECENTLY NASH IN
ORDER TO ATTRACT MORE INTEREST
FROM THE ADULT COMMUNITY.
SO I THINK THERE'S SOME MODELS
OUT THERE THAT WE CAN LOOK AT
WITH REGARD TO THIS, AND AGAIN,
IT NOT GOING TO BE A GLOBAL
APPROACH.
I THINK WE'RE GOING TO HAVE TO
TAKE INDIVIDUAL APPROACHES WITH
DIFFERENT TYPES OF SOCIETIES AND
FOUNDATIONS IN ORDER TO ACLEAVE
THESE GOALS.
THANK YOU.
>> GREAT.
MIIKKA.
>> I JUST WANTED TO ADD, WHAT WE
ARE NOW DOING FOR THE FIRST TIME
THIS YEAR WITH THE VASCULAR IS
THAT WE ORGANIZE WHAT WE CALL A
SUMMER SCHOOL, SO I DON'T KNOW
IF THAT IS SOMETHING THAT
OCCURRED IN THE U.S., AND IT
WILL BE -- OR IT IS A SERIES OF
VIRTUAL SEMINARS FOLLOWED THEN
BY ONE WEEK IN PERSON SCHOOL.
AND WHEN WE WERE SETTING IT UP,
WE WERE KIND OF WONDERING IS
THIS GOING TO WORK, ARE WE GOING
TO GET EVEN 10 PEOPLE ATTENDING,
BUT THERE WAS A HUGE DEMAND BY
YOUNG PHYSICIANS TO PARTICIPATE
AND WE HAD TO LIMIT THE NUMBER
BECAUSE WE WERE NOT -- WE DIDN'T
PLAN FOR SUCH A BIG NUMBER.
WE WANTED THEM JUST TO HAVE
FINISHED MEDICAL SCHOOL BUT FROM
THERE ON, WE LEFT IT OPEN IN THE
SENSE THAT YOU HAD TO HAVE THE
MEDICAL CURRICULUM TO BE ABLE TO
FOLLOW THE COURSES BUT THERE WAS
NO UPPER LIMIT IN THE SENSE THAT
YOU COULD BE ALREADY A
SPECIALIST IN THE FIELD.
BUT MOST YOUNG PHYSICIANS WHO
WANTED TO COME AND LEARN ABOUT,
SO WE WILL COVER EVEN MORE --
KIND OF VASCULAR -- RARE
VASCULAR DISEASES, THE VASCULAR
UNCOVERS MORE THAN JUST THE
LYMPHATIC MALFORMATIONS OR
LYMPHADEMA.
>> THIS INVOLVES MULTIPLE
INSTITUTIONS COLLABORATELY ON
THIS?
>> YES, MULTIPLE INSTITUTIONS,
MULTIPLE TEACHERS, SO FROM
PERIPHERAL VASCULAR
MALFORMATIONS AND LYMPHATIC
MALFORMATIONS ALL THE WAY TO --
SO THE RARE VASCULAR DISEASES.
>> OKAY.
AND THEN THE IN-PERSON WEEK, DO
YOU ROTATE THAT AMONG THE
DIFFERENT INSTITUTIONS THAT --
>> IT WILL NOW BE IN A CITY YOU
KNOW WELL, IN PARIS, SO I WILL
SEE NEXT YEAR WHAT THEY WILL DO,
BUT FOR NOW WE SELECTED A
CENTRAL CITY WHICH IS EASY TO
CONNECT FROM ANYWHERE.
>> WONDERFUL.
OKAY.
I THINK WE HAD ROBERT AND THEN
PAULA.
>> WE'VE BEEN AT THIS FOR A
VERY, VERY LONG TIME, AND I FIND
THAT I STILL GET CALLS FROM
PATIENTS VIA OUR NETWORK,
SOMEBODY WHO KNOWS SOMEBODY AND
WHO AS GOT A PROBLEM SO THEY
CALL THE AMERICAN CANCER SOCI
SOCIETY, AND WHEN THERE ARE
LYMPHADEMA PROBLEMS, THEY DON'T
SEEM TO BE ABLE TO GET AN ANSWER
TO THEM.
SO WE STRUGGLE WITH TRYING TO
GET PRIMARY CARE PROVIDERS TO
PROVIDE BASIC CARE AROUND CANCER
YEAR AFTER YEAR AFTER YEAR AFTER
YEAR AFTER YEAR.
AND WE DON'T HAVE A LOT OF
SUCCESS.
I WOULD ENCOURAGE THE COMMISSION
TO TRY TO FIGURE OUT THE BEST
STRATEGY BY TALKING TO THE
AMERICAN ACADEMY OF FAMILY
PHYSICIANS, THEIR LEADERSHIP.
AND STAN, YOU'RE ABSOLUTELY
RIGHT, YOU'RE NOT GOING TO GET
ANYTHING INTO MEDICAL EDUCATION.
IF IT'S NOT ON THE BOARDS.
WHEN WE GOT MAMMOGRAPHY ON THE
BOARDS AND IT BECAME A BASIS FOR
FAILING THE BOARDS --
MAMMOGRAPHY OCCURRED OVERNIGHT.
AND WE DID HAVE A PROBLEM, YOU
KNOW, PEOPLE HAD BEEN ON THE
BOARD EXAM NERS FOR MANY YEARS
AND THEY'RE SAYING WE'RE NOT
GOING TO FAIL THE GUY BECAUSE HE
MISSED A MAMMOGRAM.
BUT THE POINT WAS THEY MADE THEM
DO IT.
YOU THINK ABOUT ALL THE THINGS
PRIMARY CARE PROVIDERS HAVE TO
DEAL WITH, YOU HAVE TO FIGURE
OUT A WAY TO MAKE THEM FEEL LIKE
THEY CAN HIT A HOME RUN BY
LEARNING SOMETHING WITHOUT
HAVING TO TAKE ON A HUGE AMOUNT
OF NEW INFORMATION THAT THEY
DON'T SEE THEMSELVES APPLYING
DAY TO DAY.
SO RATHER THAN TRY TO TEACH THEM
ABOUT LYMPHADEMA, YOU MIGHT TAKE
THE APPROACH LIKE, YOU KNOW,
YOU'RE GOING TO HAVE A LOT OF
BREAST CANCER PATIENTS IN YOUR
PRACTICE THAT SEEM TO BE DOING
JUST FINE.
BUT THEY MAY NOT BE.
SO HERE'S WHAT YOU NEED TO DO TO
RECOGNIZE THESE IMPAIRMENTS, AND
NOT JUST WRITE IT OFF, YOU'RE
GETTING OLDER, YOU'RE PUTTING ON
WEIGHT, THOSE SORTS OF THINGS.
AND YOU DON'T HAVE TO TREAT THIS
PATIENT, YOU JUST HAVE TO GET
THEM TO SOMEBODY WHO CAN.
YOU KNOW, IT'S PRETTY
STRAIGHTFORWARD.
IT LIKE GETTING THE PRIMARY CARE
PROVIDER TO DEAL WITH SMOKING
CESSATION.
YOU DON'T HAVE TO TAKE IT ON.
REFER THEM TO A SPECIALIST.
ALL YOU'VE GOT TO DO IS
RECOGNIZE AND TELL THEM THAT
THEY NEED TO STOP SMOKING.
I THINK WE ALSO HAVE TO TAKE THE
POSITION THAT IT'S NOT
NEGOTIABLE WHETHER OR NOT YOUR
MEMBERSHIP HAS TO KNOW THIS OR
NOT.
THE QUESTION IS, HOW CAN THEY
BEST SERVE THE NEEDS OF THEIR
PATIENTS IN A WAY THAT'S DOABLE,
AND HOW CAN WE HELP YOU HELP
THEM?
IT'S ONE OF THOSE THINGS, DECADE
AFTER DECADE AFTER DECADE, WE'RE
PLEADING WITH THESE FIRST
RESPONDERS TO GET THEM TO
RECOGNIZE THESE THINGS.
SO I WOULD GO TO THE
PROFESSIONAL SOCIETY AND SAY, WE
HAVE TO FIGURE OUT A WAY TO DO
THIS.
WHAT'S YOUR ADVICE?
EVEN A FOCUS GROUP WITH PRIMARY
CARE PROVIDERS COULD HELP.
>> WELL, AS LUCK WOULD HAVE IT,
WE'VE INVITED THE AMERICAN
ACADEMY OF FAMILY PRACTICE THIS
AFTERNOON.
SO WE WILL TRY TO BEGIN THAT
DIALOGUE, BUT IT'S VERY
PRESCIENT OF YOU TO SAY THAT.
SO NEXT, JUST TO ACKNOWLEDGE
EVERYBODY WITH HANDS UP SO YOU
KNOW I SEE YOU, I THINK NEXT WE
HAVE PAULA, -- JAN, BABOCK AND
HASINA.
>> GREAT DISCUSSION TO HELP US
UNDERSTAND WHERE OUR NEXT STEPS
WERE.
MIIKKA, CAN I ASK A QUICK
QUESTION ABOUT WHAT WAS THE
MARKETING THAT YOU ALL DID FOR
YOUR EERCHT?
HOW DID YOU MARKET?
>> IT WAS MAINLY BY USING THE
NETWORK THAT WE HAVE.
SO IT CONSISTS OF 14
DIFFERENT -- WELL, NO, ACTUALLY
EVEN MANY MORE.
WE ARE ABOUT 60 CENTERS, I
THINK, IN THE NETWORK, BECAUSE
WE COVER ALL EUROPEAN COUNTRIES,
AND THEN EACH OF THOSE NETWORKS,
SOME OF THEM ON TOP OF NATIONAL
NETWORK, SO THE INFORMATION WAS
DISTRIBUTED BY THESE -- SO IT T.
IT WAS NOT COMPLETELY OPEN, IT
WAS USING THESE NETWORKS.
WHERE WE KNEW THAT THERE WOULD
BE YOUNG PHYSICIANS IN THESE
UNIVERSITY HOSPITALS THAT HAVE
EXPERTISE, BECAUSE IT WAS A
LITTLE BIT GEARED TOWARDS
UNIVERSITY -- CENTERS WHERE
THERE WOULD BE YOUNG PHYSICIANS
PERHAPS SPECIALIZING ALSO INTO
THE FIELD WITHOUT HAVING REALLY
PUT IT AS A CRITERIA, BUT SINCE
WE FOCUSED ON THESE KIND OF
CENTERS AND HOSPITALS, THAT WAS
THE IDEA BEHIND IT.
>> AND IT SOUNDS LIKE IT WASN'T
SPECIFIC FOR LYMPHATICS, IT WAS
JUST YOUNG PHYSICIANS.
WAS THERE ANYTHING IN PARTICULAR
THAT YOU HAD PUT FOR THIS SUMMER
SCHOOL, BECAUSE IT'S ALL ABOUT
LYMPHATICS, RIGHT?
SO WAS THERE SOMETHING YOU ALL
HAD KEY SET PHRASES?
>> IT'S MORE BECAUSE IT'S THE
RARE VASCULAR DISEASES.
SO IT HAS SIX DIFFERENT WORKING
GROUPS.
ONE IS LYMPHADEMA, ONE IS
VASCULAR AMOMLIES AND
MALFORMATIONS AND THE OTHERS ARE
VASCULAR PROBLEMS GOING FROM
LARSMALL VESSELS TO LARGE VESSE.
AND THAT'S PROBABLY -- IT'S
INTERESTING BECAUSE THEN THEY
WILL HAVE ALL THE RARE VASCULAR
DISEASES COVERED IN ONE COURSE.
>> WHICH IS GREAT, BECAUSE WE
KNOW THE INFLUENCES THAT ARE
HAPPENING WITH LYMPHATICS IN THE
VASCULATURE AS WELL, AND THAT'S
A GREAT WAY TO KIND OF INCREASE
THE AUDIENCE'S INTEREST IN MAYBE
EVEN COMING, WHICH IS WONDERFUL.
I WANTED TO MAKE A QUICK
DOVETAIL BACK TO SOME OF OUR
CONVERSATION WE WERE JUST
HAVING.
IT SEEMS LIKE IN DIFFERENT
CONFERENCES, WHERE WE ALL ON
THIS CALL HAVE GONE TO MANY
CONFERENCES AND PROBABLY MANY OF
US HAVE ALSO CREATED A
CURRICULUM AT THESE
INTERNATIONAL AND NATIONAL
CONFERENCES, IS THAT SPECIFIC
ONES HAVE CERTAIN PEOPLE AT THAT
MOMENT IN THOSE YEARS THAT ARE
WELL RECOGNIZED IN THAT FIELD,
AND I'M KIND OF THINKING, WE'LL
CALL THEM KEY PERSONS, MAYBE WE
COULD TARGET AN EDUCATIONAL
SYSTEM TO THESE KEY PERSONS
WHO'S THEN POTENTIALLY, IF
THEY'RE INTERESTED, CAN ACTUALLY
START TO BRING THAT CONVERSATION
BACK TO THEIR AREA, WHERE STAN,
YOUR POINT IS WELL MADE, WHEN WE
BRING IN SOMETHING WHERE OTHERS
DON'T KNOW THAT THEY NEED TO
KNOW IT, THERE MIGHT ONLY BE SIX
OR 10 IN THE AUDIENCE, BUT IF WE
HAVE SOME OF THESE KEY
INDIVIDUALS WHERE OTHERS ARE
LIKE, OH, SO-AND-SO IS GOING TO
BE SPEAKING, I WANT TO LISTEN,
THAT MIGHT ACTUALLY INCREASE THE
NUMBER OF PEOPLE ATTENDING.
AND THEY'RE JUST EMBEDDED WITHIN
THE CONFERENCES LIKE WE ALL
TALKED ABOUT, NOT HAVING A
SEPARATE CONFERENCE BECAUSE WE
DON'T KNOW TO GO, WE NEED TO
KIND OF BRING IT IN TO THESE --
IN TO EACH INDIVIDUAL
SPECIALTY'S CONFERENCES.
>> RIGHT.
MIIKKA, I JUST WANTED TO COMMENT
THAT ONE CHALLENGE WE WILL HAVE
IN EMBRACING YOUR BEAUTIFUL MO
MODEL IS AS YOU KNOW HOW MORE
DECENTRALIZED EVERYTHING IS HERE
IN THE UNITED STATES, SO
REACHING A CAPTIVE AUDIENCE EVEN
WITHIN A SET OF ANNOUNCEMENTS IS
MUCH MORE CHALLENGES, I THINK,
THAN THE ENVIRONMENT IN WHICH --
IT'S A BEAUTIFUL MODEL.
I WISH WE COULD EMULATE IT.
>> PERHAPS WE CAN DO SOMETHING
THAT TRAVELS AROUND AND THE
VIRTUAL PART ANYHOW, IT'S
VIRTUAL, SO --
>> YEAH, YEAH, ABSOLUTELY.
JERRY, I THINK YOU WERE UP NEXT.
>> SO THIS IS KIND OF A QUESTION
MORE FOR THE
CLINICIAN-SCIENTISTS OR THE
CLINICIANS THAT ARE HERE.
SO I HEARD SOME IDEAS THAT SOUND
LIKE CONTINUING EDUCATION, AND
ARE THERE ANY SPECIFIC
CONTINUING EDUCATION PROGRAMS
THAT PEOPLE GET CREDIT FOR IN
THE LYMPHATIC FIELD?
>> WELL, I CAN ANSWER -- I CAN
START WITH THAT.
MANY OF YOU KNOW STARTING WITH
THE PANDEMIC UNDER LERN, WE'VE
HAD FOUR NOW, THEY'VE BEEN
ATTENDED INTERNATIONALLY BY UP
TO 800 PARTICIPANTS PER YEAR, SO
I BEEN VERY SUCCESSFUL, AND WE
HAVE OFFERED CME CREDIT, BUT
AGAIN, I THINK WE END UP
PREACHING TO THE CONVERTED MORE
THAN BRINGING IN PEOPLE WHO SAY
OH, GEE, I WISH I KNEW MORE
ABOUT LYMPHATICS.
SO THAT'S THE CHALLENGE, IS
GETTING THIS MATERIAL IN FRONT
OF PEOPLE WHO DON'T REALIZE THAT
THEY MIGHT BE QUITE ENERGIZED TO
LEARN IF THEY WERE ACTUALLY
EXPOSED TO IT.
ANY OTHER CLINICIANS WANT TO
COMMENT ON THE CME SIDE OF
THINGS?
>> STAN, YOU'RE EXACTLY RIGHT.
IT'S ONE OF THOSE WHERE THE
CLINICIANS, IF THEY SOMEHOW GOT
IT THROUGH THEIR KRV CONFERENCER
THEIR OWN COLLEAGUES AND THEY
MIGHT START TO SEEK OUT SOME OF
THIS EDUCATION.
I DO THINK IT'S A GREAT
OPPORTUNITY FOR MANY OF THE
DIFFERENT SYMPOSIUMS THAT HAVE
BEEN CREATED AND THAT STILL
EXIST ON YOUTUBE FOR THEN
BRINGING IT INTO THE DIFFERENT
AREAS FOR EDUCATION.
LIKE STAN, YOU'RE A GREAT
EDUCATOR, AND AT OUR AREA, WHEN
I WAS HELPING MY OWN GROUP AND
MEDICAL STUDENTS, I'M A PHYSICAL
THEIR PACIFIC ISLTHERAPIST, SO R
MORE FROM A PHYSICIAN OR NP FOR
THAT MATTER, IN DIDACTICS SO
THEY HAD OPPORTUNITY TO HEAR
MORE FROM AN EXPERT THAN AT
THEIR SAME LEVEL AND THERE MIGHT
BE SOME OPPORTUNITIES THAT WAY
AS WELL.
SADLY, I THINK, I'LL SPEAK FOR
THE PHYSICAL THERAPY EA I THINK
SOME OF THE EDUCATION IS
MISEDUCATION.
THERE'S BEEN A LOT OF CHANGES IN
LYMPHATICS OVER THE LAST DECADE
SO IT'S ALSO GOING TO BE REALLY
IMPORTANT TO HELP RE-EDUCATE
THOSE WHO THINK THAT THEY'RE
ALREADY EDUCATED IN THIS SPACE.
>> RIGHT.
SO I THINK I HAVE JAN AND BABOCK
AND THEN MARK, PLEASE.
>> ONE OF THE EXCITING AREAS
THAT I'VE EXPERIENCED WHEN
WORKING IN TUMOR ANDROGEN CYST
IS A TREMENDOUS OPPORTUNITY TO
INTERACT WITH THE PHARMACEUTICAL
SECTOR, EITHER AT MEETINGS,
THROUGH GRANTS AND OTHER WAYS,
AND I WONDER IF THERE'S A KEY
ROLE OF THE COMMISSION EITHER AT
AN EARLY PHASE OR A MORE MATURE
PHASE TO ENGAGE PHARMACEUTICAL
STAKEHOLDERS TO EDUCATE THE
INDUSTRY ABOUT OPPORTUNITIES TO
UNDERSTAND AND USE KNOWLEDGE
ABOUT THE LYMPHATIC SYSTEM TO
ADVANCE TREATMENTS, WHETHER THEY
BE THERAPEUTICS OR DEVICES OR
OTHER TYPE OF THERAPEUTICS.
>> I CAN SPEAK A LITTLE BIT TO
THAT SINCE I WORK IN
PHARMACOLOGICAL DISCOVERY.
MY CONVERSATIONS WITH THE
PHARMACEUTICAL INDUSTRY IS THAT
THEY'RE STILL STRUGGLE TO TRY TO
UNDERSTAND THE SIZE OF THE
MARKET.
THEY DON'T KNOW IT AND THEY
WONDER ABOUT IT AND THEY DON'T
HAVE ANY PIPELINES FOR IT
BECAUSE THEY DON'T PERCEIVE IT
AS A LIST OF THINGS TO BE
CONCERNED WITH.
I JUST WAS TOLD, HASINA, THAT I
SKIPPED OVER YOU SO YOU'RE NEXT
ACTUALLY.
>> IT'S OKAY THE DON'T WORRY,
STAN.
I WAS GOING TO WAIT MY TURN
REGARDLESS, SO NOT TO WORRY.
WHAT I'M HEARING IS THIS
DEFINITELY NEEDS TO BE A
MULTIPRONGED APPROACH, SO THERE
HAS TO BE SOME DEGREE OF
ACCOUNTABILITY FROM MEDICAL
EDUCATION BECAUSE THAT SPURS THE
NEED FOR SORT OF EMERGING
PHYSICIANS AND CLINICIANS TO
LEARN ABOUT LYMPHATIC DISEASES
AS PART OF THE CURRICULUM, BUT
THEN THERE'S THE PROBLEM OF THE
EXISTING PHYSICIANS AND
CLINICIANS AS YOU HAVE RIGHTLY
IDENTIFIED, STOP, AND THAT SEEMS
SORT OF DIFFICULT BECAUSE YOU
HAVE TO SORT OF CAPTURE THEM TO
WANT TO BE INTERESTED, YOU'VE
ILLUSTRATED THE PROBLEM WITH
THAT AND I THINK WE'VE COME UP
WITH A FEW SOLUTIONS.
I WANT TO HEAR A LITTLE BIT MORE
FROM THE PEOPLE ON THE PANEL AND
THEIR EXPERTISE ABOUT MOBILIZING
PATIENT ADVOCACY TOWARD THAT
SECOND GROUP OF EXISTING
PHYSICIANS.
IF YOU HAVE A BUNCH OF PATIENTS
WHO ARE EDUCATED THIS COULD BE
SOMETHING THAT COULD BE GOING ON
WITH THEM AND THEY'RE
CONSISTENTLY ASKING THEIR
PHYSICIAN, COULD THIS BE
LYMPHADEMA, COULD THIS BE THIS,
AND THEY SORT OF GET A LITTLE
BIT MORE OF THAT IN THEIR HERE
AT THE SAME TIME AS THEY'RE
BEING EXPOSED TO THESE
CONTINUING MEDICAL EDUCATION, ET
CETERA, COULD THAT BE SOMETHING
THAT WE COULD LEVERAGE?
SO COULD BREAST CANCER AWARENESS
MONTH HAVE A HUGE THING TARGETED
TO -- NOW THEY'RE REALLY MORE
EDUCATED ABOUT THIS AND I'M
BRINGING THEM TO THEIR
CLINICIANS WHO NOW THEN WHEN
THEY SEE THERE COULD BE THIS
COURSE OR THIS CURRICULUM ABOUT
LYMPHADEMA, MAYBE THEY'LL SAY
MAYBE I SHOULD LEARN ABOUT THAT,
MY PATIENTS KEECH ASKING ME
ABOUT THESE KINDS OF THINGS.
CAN WE USE THAT AND LEVERAGE IT,
I'D LOVE TO HEAR MORE FROM THE
PANEL ABOUT THIS.
>> SURE.
LET ME ACKNOWLEDGE, I THINK NEXT
WE HAD BABOCK, AND WE HAD MARK
AND MIIKKA.
ROBERT.
>> I THINK THE IDEAS ABOUT
EDUCATION ARE GREAT, BUT I THINK
PRACTICALLY SPEAKING, IT'S GOING
TO BE VERY DIFFICULT TO DO.
I THINK THERE'S NOW MORE TO
LEARN FOR MEDICAL STUDENTS AND
PRIMARY CARE PHYSICIANS THAN
THERE EVER HAS BEEN.
SO THE AMOUNT OF KNOWLEDGE THAT
THEY NEED TO HAVE IN GENERAL IS
JUST SO MUCH HIGHER, FROM
PATHOLOGY TO PHARMACOLOGY TO
PHYSIOLOGY, SO I THINK WE NEED
THEM TO KNOW A LOT OF THE
INFORMATION, AND THEN TO ASK AN
ADDITIONAL SORT OF -- I THINK
THEY HAVE LESS TIME TO LEARN IT.
WHEN I WAS IN MEDICAL SCHOOL, WE
HAD TWO YEARS OF CLASSROOM AND
NOW IT'S LESS THAN A YEAR.
SO MEDICAL STUDENTS NOW SPEND
VERY LITTLE TIME IN THE
CLASSROOM, MOST OF THE TIME WITH
PATIENTS, SO I THINK THAT'S
DIFFICULT TOO.
AND I THINK MOST IMPORTANTLY FOR
PRIMARY CARE PHYSICIANS, THERE'S
NO DRUG TREATMENT FOR LYMPHATIC
DISORDERS.
THEY CAN'T PRESCRIBE ANYTHING,
YES, THEY CAN REFER THEM OUT,
BUT I THINK THEY FEEL KIND OF
LESS EMPOWER TODAY HELP THESE
FOLKS RATHER THAN ANYONE ELSE,
SO THE IDEA IS WHY SEE ME, THEN
GO SEE A SURGEON IF YOU HAVE
LYMPHADEMA BECAUSE I'M NOT GOING
TO BE ABLE TO REALLY HELP YOU AS
A PRIMARY CARE PHYSICIAN.
SO I THINK ALL THOSE ISSUES MAKE
IT DIFFICULT TO GET THIS INTO
THE CURRICULUM AND ALSO GET THIS
INTO THE MINDS OF THE PRIMARY
CARE PHYSICIANS AND I THINK THIS
REALLY CALLS FOR PATIENT
ADVOCACY AND AI FOR THEM TO BE
ABLE TO LOOK UP THE AVAILABLE
INFORMATION THAT IS THERE FOR
THEM, THE AI COULD HELP THEM
UNDERSTAND THE DISEASE PROCESS,
AND THESE CHATBOTS ARE GETTING
VERY, VERY GOODENOW, AND I THINK
IF IT'S DONE CORRECTLY, IT COULD
BE A VERY GOOD RESOURCE, AND IT
COULD BE A VERY GOOD SOURCE OF
PATIENT REFERRAL.
SO I THINK THAT'S A MUCH BETTER
AND MORE DIRECTED WAY TO GO.
>> THANK YOU, BABOCK.
MARK.
>> I'M IMPRESSED WITH ALL THE
COMMENTS I'VE JUST HEARD, AND --
PATIENT PIECE BECAUSE THERE'S
OPPORTUNITY THERE.
I THOUGHT I'D DRAW AN ANALOGY TO
OTHER VASCULAR DISEASES YOU MAY
BE FAMILIAR WITH, PERIPHERAL
ARTERY DISEASE, DEEP VEIN
THROMBOSIS, WE'VE DONE A LOT IN
THOSE AREAS -- AND IT'S
REALLY -- IT'S RISEN TO A MUCH
MORE -- BOTH THINGS --
PHARMACEUTICAL INDUSTRIES HAVE
TAKEN AN INTEREST IN BOTH OF
THOSE PROBLEMS, AND THERE ARE
DRUGS THAT ARE AVAILABLE.
I WAS SURPRISED TO HEAR YOU SAY,
STAN, THAT -- OVER THE LAST FOUR
YEARS, SYMPOSIUM -- I BET YOU
MANY PEOPLE DIDN'T KNOW ABOUT
THAT, AND TO GET OUT THERE AND
COMMUNICATE THAT, ADVERTISE I
IT -- RAISE THE LEVEL OF
ENTHUSIASM IF PEOPLE GET AN
OPPORTUNITY TO HEAR YOU.
AND I'D ALSO -- SPEAKER PANELS,
PEOPLE WHERE INSTITUTIONS CAN GO
TO AND INVITE THEM FOR GRAND
ROUNDS -- AND THIS WOULD BE A
GREAT OPPORTUNITY.
I THINK WE'VE GOT TO GET THE
WORD OUT THERE.
AND THEN FINALLY, THE -- CAN'T
UNDERSTATE THAT.
GETTING PATIENTS OUT THERE,
COMMUNICATING ON SOCIAL MEDIA,
WITH THEIR PHYSICIANS -- REALLY
BE VERY IMPORTANT IN GETTING
PHYSICIANS INTERESTED IN
LEARNING MORE ABOUT IT.
>> FANTASTIC, THANK YOU.
MIIKKA, AND THEN ROBERT.
>> ACTUALLY MARK ALREADY A
LITTLE BIT ALLUDED TO THIS.
WHAT I'VE SEEN IN THESE
MEETINGS, I GO TO CLINICAL
MEETINGS AND BASIC SCIENCE
MEETINGS AND I THINK THEY ARE
TWO WORLDS APART.
WHEN I GO TO THE CLINICAL
MEETINGS, THERE'S A BOOST IN ALL
THE LYMPHATIC MALFORMATIONS AND
VASCULAR MALFORMATIONS AND THE
INTEREST TO HEAR ABOUT THEM
BECAUSE THERE ARE DRUGS NOW THAT
WE CAN -- BUT JUST TO UNDERSTAND
THE BASIC BIOLOGY GOES VERY
QUICKLY.
WHICH I THINK IS ONE PROBLEM IN
THIS.
THAT WAS ALL.
>> ROBERT.
>> I WAS JUST GOING TO RESPOND
TO DR. REED'S QUESTIONS.
AND I THINK THE ANSWER TO
PROBABLY EVERY SINGLE ONE OF
THEM IS YES.
PATIENTS SHOULD GET A
SURVIVORSHIP PLAN, THEY SHOULD
KNOW THE SEQUELAE TO LOOK FOR IN
THE NEAR TERM AND THE LONG TERM.
THEY -- WHEN WE TALK ABOUT
BREAST CANCER AWARENESS, I LOVE
THIS IDEA OF MOVING BEYOND JUST
A PINK FEST FOCUSED ON
SCREENING, TO ACTUALLY -- YOU
KNOW, AND VERY VISIBLY CARVE OUT
SOMETIME FOR SURVIVORS, AND BEST
WAY TO DO THAT IN A WAY IS TO
ORGANIZE ALL THE GROUPS THAT
OUGHT TO BE CONTRIBUTING TO THE
AWARENESS MONTHS AND SAY CAN WE
COORDINATE SOME OF OUR MESSAGES.
YOU CAN GET PEOPLE TO TALK ON A
MORNING SHOW.
BELIEVE ME, BREAST CANCER
SURVIVORS WILL TUNE IN.
AND DOCTORS RESPOND TO PATIENTS'
REQUESTS.
SO IF WOMEN KNOW TO NOT JUST BE
PLACATED WITH ANSWERS TO THEIR
QUESTIONS THAT DON'T GIVE THEM
ANYTHING TO WORK WITH, THEY ALSO
NEED TO KNOW WHERE THEY CAN CALL
TO GET MORE INFORMATION.
THE AMERICAN CANCER SOCIETY HAS
A 24-HOUR HOTLINE AND ALL OF OUR
OPERATORS ARE PREPARED TO TALK
ABOUT LYMPHADEMA, BUT OTHER HOT
LINES COULD TO THIS AS WELL, OR
PATIENTS COULD KNOW.
BUT REALLY RIGHT NOW, WE JUST
DON'T HAVE A CONSISTENT OR
ANYTHING SYSTEMATIC WHERE PEOPLE
CAN GO AND GET DEPENDABLE
INFORMATION, NOT CLINICIANS, NOT
PATIENTS, AND THAT'S I THINK AN
AREA WHERE SOME KIND OF
COLLABORATION AMONG MANY
ORGANIZATIONS, WE COULD SAY WE
HAVE TO START FILLING THIS GAP.
AND AFFECTING PROACTIVE --
BECAUSE MANY WOMEN ARE LIVING
WITH THESE SYMPTOMS AND THEY'VE
JUST NOT HAD -- NOT BEEN ABLE TO
TURN TO ANYONE SUCCESSFULLY OR
FOR ANSWERS.
>> SELEN, YOU'VE BEEN HOLDING
YOUR QUESTION FOR QUITE A WHILE
AND WE HAVE ABOUT FIVE MINUTES
OR SEVEN MINUTES.
>> WELL, THANK YOU.
THIS IS ACTUALLY FROM -- MEMBER
PATIENT WHO IS ALSO A
REPRESENTATIVE, SHE'S ASKING HER
QUESTION TO JOEL MOSS.
JOEL, THIS IS FOR YOU, DO THE
LAM FOUNDATION AND TUBEROUS --
THOSE CONDITIONS FINANCIALLY IN
ADDITION TO PROVIDING PATIENT
SUPPORT AND RECRUITING PATIENTS
INTO STUDIES?
IF SO, HOW IS THAT SET UP WITH
THE NIH?
THANK YOU.
>> I DON'T KNOW EXACTLY HOW THEY
GET THEIR MONEY.
MOST OF THE MONEY COMES FROM
PATIENT ADVOCACY, AND FINDING
PEOPLE WHO CAN DONATE.
WHAT THEY'RE TRYING TO DO,
THOUGH, IS MOVE AWAY FROM THAT.
BECAUSE THE PROBLEM IS THAT'S
LIMITED IN TERMS OF WHAT THEY
CAN DO, AND ESPECIALLY DURING
THE PANDEMIC, IT WAS LIMITED.
SO THERE IS A CLEARCUT ANSWER
BUT IT'S ALSO CLEAR THEY HAVE A
PROBLEM.
ADVOCACY IS A BIG PART OF WHAT
THEY'RE DOING.
SO JUST BEFORE THE PANDEMIC,
THERE WAS A MEETING IN
WASHINGTON.
IT WAS A PURPOSE TO THAT.
SO THEY TRY TO GET PEOPLE TO GO
TO VARIOUS SENATORS AND
CONGRESSMEN AND PROBABLY AT THE
SAME TIME TALK TO THE FDA
BECAUSE THE FDA CAN'T TRAVEL AS
MUCH BECAUSE OF THE WAY PAYMENTS
ARE MADE, SO IF YOU WANT TO GET
THE PATIENT VOICE IN FRONT OF
THE FDA, HAVING A MEETING IN
WASHINGTON THAT IT PAYS FOR THEM
TO GO TO MAKES SENSE.
MY IMPRESSION HAS BEEN THAT WE
HAVE A HANDBOOK FROM THAT
MEETING, AND AT EACH OF MY
TUESDAY NIGHT MEETINGS, WE HAVE
A COPY OF THE HANDBOOK AND A
LIAISON FROM THE FOUNDATION THAT
PRESENTS THIS IS WHAT THE FDA
WAS DOING AND WHY THE PATIENT
WANTED -- WANTED TO HEAR THE
PATIENT VOICE.
AND I THINK A LOT OF THIS HAS TO
DO WITH THE PATIENT VOICE.
THEY HAVE TO REALLY GET OUT
THERE -- I THINK AGAIN WITH
LYMPHADEMA, I THINK IT'S FAIRLY
OBVIOUS WHERE IT IS, PATIENTS
ARE JUST NOT GOING FORWARD WITH
PUSHING PEOPLE TO GET SOMETHING
DONE.
MAYBE IT'S BECAUSE THERE'S A LOT
OF OTHER PEOPLE THERE, AND WHEN
THERE'S ONLY ONE PERSON, ONE
DAUGHTER THAT HAS THE DISEASE,
THEN THAT ONE PERSON WILL PUSH.
WHAT YOU HAVE TO DO IS GET
PEOPLE WHO KNOW THERE'S OTHER
PEOPLE INVOLVED TO GET OUT THERE
AND PUSH AS WELL.
I THINK PATIENT VOICE IS REALLY
IMPORTANT.
I THINK THE AMERICAN THORACIC
SOCIETY HAS DONE A BEAUTIFUL JOB
OF DEVOTING ONE SESSION AT A
MEETING CLEARLY FOR THE PATIENT
VOICE.
NOW, PART OF THIS WAS IN ONE
CASE LYMPHATIC, BUT MOST OF IT
OBVIOUSLY IS LUNG DISEASE, BUT
THEY ALSO SAY THERE'S A GROUP
YOU CAN GO TO WITH A BOOTH AT
THE EXHIBITOR HALL THAT CAN LOOK
AT YOUR PROBLEMS, TO MAKE IT
REALLY INTERACTIVE FOR THE
PATIENTS THAT COME.
>> WONDERFUL.
SO WE HAVE ABOUT FIVE MINUTES
LEFT.
I HAVE JAN AND MIKE AND MELISSA,
THAT MAY TAKE US TO THE END OF
THE --
>> JUST RESPONDING TO HASINA'S
COMMENT, YES, I THINK THAT THE
CANCER ADVOCACY GROUPS CAN BE A
REALLY POWERFUL VOICE FOR
SURVIVORS, BUT I WOULD PROPOSE
WE BROADEN THAT TO PREVIVORS TO
SURVIVORS, SO A MORE ROBUST
DISCUSSION ABOUT THE
CONSEQUENCES, STRENGTHS AND
WEAKNESSES OF LYMPH NODE
REMOVAL, AT EARLY STAGES TO HELP
PATIENTS UNDERSTAND THAT
PARTICULAR AREA.
>> GREAT.
MIKE?
>> ALSO WOULD LIKE TO RESPOND TO
HASINA'S COMMENTS.
I THINK FROM LGDA'S PERSPECTIVE,
WE ARE REACHING PCPs OR
PRIMARY CARE PHYSICIANS THROUGH
THE PATIENT.
SO WE'RE PROVIDING THE PATIENT
INFORMATION THEY CAN TAKE TO
THEIR PCPs, AND ALSO THROUGH
THIS MECHANISM, WE'RE OFFERING
OPPORTUNITIES TO PARTICIPATE IN
THE MORE DETAILED EDUCATION
ABOUT COMPLEX LYMPHATIC
ANOMALIES.
WHAT WE'VE FOUND WITH THIS
APPROACH IS THAT YOU'RE NOT JUST
REACHING INDIVIDUAL PROVIDERS,
BUT YOU'RE REACHING PRACTICES OF
PROVIDERS.
SO WE'VE ACTUALLY FOUND -- WE'RE
GETTING MULTIPLES AS FAR AS
REACH IS CONCERNED, AND HAVING A
PATIENT WITH THESE DISORDERS IN
YOUR PRACTICE IS A REALLY
MOTIVATING FACTOR FOR PHYSICIANS
TO KNOW MORE ABOUT TH THEM.
>> TERRIFIC.
MELISSA.
>> I'LL GO QUICKLY.
IT SEEMS LIKE IN MEDICAL SCHOOLS
TOO, THERE IS AN OFFICE OF
PUBLIC RELATIONS, AND THEY
USUALLY RESPOND TO REQUESTS FROM
TV STATIONS AND RADIO STATIONS.
CAN YOU FIND SOMEONE WHO KNOWS
SOMETHING ABOUT CANCER-RELATED
LYMPHADEMA, AND THEN THEY HUNT
YOU DOWN AND ASK YOU IN ABOUT 10
MINUTES' NOTICE TO RUN OVER TO A
TV STUDIO OR TALK ON THE RADIO
OR SOMETHING.
BUT WE COULD BE, AS A COMMUNITY,
MORE PROACTIVE, AND INSTEAD OF
WAITING FOR A NEWS REPORTER WHO
HAS A FRIEND WHO'S GOING THROUGH
BREAST CANCER TO DECIDE TO RUN A
STORY ABOUT TO MAYBE ASK THE PR
PEOPLE AT THE INSTITUTIONS WHERE
WE WORK TO, ONCE A YEAR, LET
SOMEONE PREPARE SOMETHING AND GO
TO THE TV STATIONS AND TYPICALLY
THEY'RE VERY RECEPTIVE FOR THAT.
THEY'RE ALWAYS LOOKING FOR NEWS.
I LEARNED A LONG TIME AGO IN A
MARKETING CLASS, HALF OF STUFF
YOU READ IN NEWSPAPERS WAS SENT
IN BY A COMPANY OR SOMEONE WHO
HAD A KIND OF HIDDEN MOTIVE FOR
PUTTING THAT STORY TOGETHER.
WE COULD CERTAINLY DO SOMETHING
LIKE THAT AS A COMMUNITY.
>> GREAT IDEA.
WELL, I THINK WE HAVE ONE MINUTE
FOR ANY BURNING FINAL COMMENT,
QUESTION OR CRITICISM, WHATEVER
IT MAY BE?
I DON'T SEE ANY HANDS UP.
I REALLY WANT TO THANK --
>> JUST ONE FOLLOWING MELISSA.
ON NPR3 DAYS AGO, THERE WAS AN
INTERVIEW WITH JOHNNY AND JEFF,
I THINK --
>> AND JEFF.
>> AND IN FACT, YOU KNOW, THIS
IS GREAT ADVERTISEMENT BECAUSE
THIS IS ABOUT DRAINAGE OF BRAIN
LYMPHATICS AND THIS IS WHAT
PEOPLE GET VERY INTERESTED IN,
ALZHEIMER'S, HOW YOUR BRAIN --
THOUGHTS, WHATEVER, SO I THINK
THIS IS WHAT WE NEED TO TAKE
ADVANTAGE AS WE MAKE IT BROADER,
PEOPLE GET INTERESTED IN THE
FIELD.
>> YEAH, FANTASTIC.
WELL, I REALLY WANT TO THANK OUR
PANELIST THIS MORNING FOR GIVING
US SO MUCH INFORMATION AND
INSIGHT INTO THE VARIOUS
PATHWAYS IN WHICH YOUR
ORGANIZATIONS OR YOU AS
INDIVIDUALS CAN INTERFACE WITH
US AS A COMMISSION.
THANKS TO THE COMMISSIONERS FOR
LUCID QUESTIONS AND I DO HOPE WE
CAN TAKE ALL THIS INFORMATION
FORWARD AND WEAVE IT INTO OUR
EVENTUAL SET OF RECOMMENDATIONS
TO THE ADVISORY COUNCIL.
SO THANKS, EVERYONE.
WE ARE DUE FOR A LUNCH BREAK,
AND WE RETURN TO THE NEXT
SESSION AT 12:25, I BELIEVE.
>> THANK YOU, STAN.
NHLBI THANKS EVERYONE TOO.
THANK YOU FOR SUPPORTING THIS
WORK AND JOINING US FROM ALL
AROUND THE WORLD.
PLEASE GO AND JOIN THE NIH
VIDEOCAST TO LISTEN TO THE NEXT
SESSION.
THANK YOU.
I WOULD LIKE TO WELCOME EVERYONE
TO THE AFTERNOON SESSION OF THE
THIRD NATIONAL COMMISSION ON
LYMPHATIC DISEASES MEETING.
WE THANK ALL THE PARTICIPANTS OF
PANEL B JOINING US TODAY.
BEFORE MASSING THEPASSING THE ME
DREYER, CO-CHAIR, IS IN
ATTENDANCE BUT WILL NOT BE
CO-LEADING THE MEETING ACTIVELY
DUE TO HER HEALTH-RELATED
PROBLEMS.
WITH THAT, IT IS MY GREAT
PLEASURE TO RE-INTRODUCE
DR. STANLEY ROCKSON, THE NCLD
CO-CHAIR, FOR HIS WELCOME
REMARKS.
THANK YOU.
>> THANK YOU, SELEN, AND THANK
YOU, EVERYONE, WHO IS ATTENDING
THIS AFTERNOON SESSION EITHER ON
THE VIDEOCAST AS PART OF THE
PUBLIC, OUR COMMISSIONERS WHO
HAVE BEEN HERE FROM THE START OF
THE DAY, AND MEMBERS OF PANEL B,
WHO HAVE BEEN INVITED TO WORK
WITH US TO TRY TO COME UP WITH
SOME CREATIVE SOLUTIONS TO THE
PROBLEMS OF LYMPHATIC DISEASE.
FLEUSH NOW THIS IS GOING TO BE
REPEAT FOR THOSE THAT WERE
PRESENT ON THE MORNING SESSION
BUT WE WANT PANELISTS TO BE
AWARE ABOUT THE CHARGE OF THIS
NATIONAL COMMISSION.
IT IS A TRANSPARENT INCLUSIVE
AND ACCESSIBLE PUBLIC FORUM.
WE'RE ATTEMPTING TO ASSESS
CRITICAL CHALLENGES AND
SCIENTIFIC AND CLINICAL TEUPTS
RELATED TO LYMPHATIC DISEASING.
YOU, THE PANELISTS, ARE INVITED
AS IMPORTANT STAKEHOLDERS
IMPLICITLY IN THIS PROCESS, AND
TODAY WE'RE GOING TO TRY TO
GATHER INPUT FROM YOU
SPECIFICALLY THAT WILL HELP US
TO ARRIVE AT SOME DECISIONS
REGARDING OUR ACTIONS AND
EVENTUALLY WE WILL PROVIDE
ACTIONABLE PROGRESS UPDATES AND
A FINAL REPORT TO THE NATIONAL
HEART, LUNG AND BLOOD ADVISORY
COUNCIL TO REFLECT THESE VARIOUS
PERSPECTIVES AND TO IDENTIFY A
PATH FORWARD FOR CREATING
CHANGE.
SO IF WE CAN HAVE THE NEXT
SLIDE, PLEASE.
THERE ARE 15 INDIVIDUALS
APPOINTED TO THIS NCLD WHO COME
FROM A VARIETY OF DISCIPLINES,
INCLUDING BASIC INVESTIGATION,
TRANSLATIONAL INVESTIGATION,
CLINICIANS, PATIENT
STAKEHOLDERS, AND TOGETHER WE
ARE DELIBERATING ON THIS MATTER
TO CARRY OUR MISSION FORWARD, WE
HAVE CREATED SIX SUBCOMMITTEES
THAT YOU SEE LISTED HERE,
SEVERAL MEMBERS ARE ON MORE THAN
ONE COMMITTEE, BUT WE HAVE
IDENTIFIED THESE AS THE VERY
IMPORTANT FOCUS AREAS THAT MAY
COME UP IN OUR DISCUSSIONS
TODAY, THESE INCLUDE SCIENTIFIC
ADVANCEMENT, EDUCATIONAL
IMPERATIVES, MEASURABLE RESULTS,
PATIENT TOOLS, THIRD PARTY
COVERAGE AND COMMUNITY GROWTH.
THAT YOU SEE AT THE TOP OF THE
PAGE, THERE IS A URL THAT YOU
CAN UTILIZE TO GAIN MORE DIRECT
INFORMATION ABOUT THE
COMPOSITION OF THE COMMISSION
AND ITS INDIVIDUAL MEMBERS.
SO I'D LIKE TO NOW INTRODUCE THE
INVITED MEMBERS OF THIS PANEL B.
I WILL GO DOWN THIS LIST IN
ORDER.
I WILL MENTION YOUR NAME AND THE
ORGANIZATION THAT YOU REPRESENT.
, AT WHICH YOU WILL HAVE 7 OR
8 MINUTES TO TALK ABOUT YOURSELF
AND YOUR RELATIONSHIP, IF THERE
IS ONE ALREADY, TO LYMPHATIC
DISEASE, OR TO THE LYMPHATIC
REALM, AND THEN ALSO TO TALK
SPECIFICALLY ABOUT THE
ORGANIZATION THAT YOU REPRESENT
AND HOW IT MIGHT INTERFACE
POTENTIALLY WITH THE ACTIVITIES
OF THIS COMMISSION.
A SUBTEXT FOR MUCH OF WHAT WE'LL
BE TALKING ABOUT TODAY, I
BELIEVE, IS GOING TO BE
EDUCATION SO YOU MIGHT
SPECIFICALLY BE THINKING ABOUT
THE REALM IN WHICH YOUR
ORGANIZATION MIGHT BECOME
INVOLVED IN THE EDUCATIONAL
IMPERATIVE SURROUNDING LYMPHATIC
DISEASE.
SO I'M GOING TO START WITH
ELIZABETH CAMPIONE, WHO IS HERE
TO REPRESENT LANA.
>> HI, GOOD MORNING.
IT'S STILL MORNING WHERE I AM.
THANK YOU, I'M REALLY HONORED TO
HAVE BEEN INVITED TO BE PART OF
THIS PANEL.
I ACTUALLY GO BY BETSY, SO I'M
BETSY CAMPIONE, I AM A PHYSICAL
THERAPIST.
I'VE GOT ABOUT TWO DECADES WORTH
OF EXPERIENCE WORKING WITH
PATIENTS WHO HAVE BEEN DIAGNOSED
WITH LYMPHADEMA OF VARIOUS
ETIOLOGIES.
I'M AN ASSOCIATE PROFESSOR AND
DOCTOR OF PHYSICAL THERAPY
PROGRAM AT MIDWESTERN
UNIVERSITY.
IT'S A SMALL UNIVERSITY JUST
OUTSIDE OF CHICAGO, AND I'M ALSO
PRESIDENT OF THE LYMPHOLOGY
ASSOCIATION OF NORTH AMERICA, SO
I'M REALLY HERE WEARING MY HATS
ON THAT BUT DO SOME OTHER
PROJECTS RELATED TO OTHER
PROFESSIONAL ORGANIZATIONS.
WE DO SUMMARY SEARCH IN TERMS OF
IMPLEMENTATION SCIENCE, VERY
SMALL SCALE, REALLY WORKING WITH
SOME OF THE CLINICAL PRACTICE
GUIDELINES THAT COME OUT OF THE
APTA, BUT OTHERS ARE HERE TO
TALK ABOUT THAT, SO I'M NOT
GOING TO STEAL THEIR THUNDER.
SO I JUST WANT TO SHARE A LITTLE
BIT ABOUT LANA.
LANA IS A NON-PROFIT
ORGANIZATION CERTIFIED IN THE
SPECIALIST OF HEALTHCARE
PROFESSIONALS WHO DIAGNOSE
AND/OR TREAT LYMPHADEMA AND ITS
RELATED DISORDERS.
DR. SMITH THIS MORNING
HIGHLIGHTED THE ROLE THAT THE
AMERICAN CANCER SOCIETY PLAYED
IN THE ESTABLISHMENT OF LANA.
BUT IT WAS CREATED AFTER THEIR
MEETINGS IN THE LATE 1990s,
WHERE THERE WAS A RECOMMENDATION
THAT WE NEEDED TO ESTABLISH
CERTIFICATION GUIDELINES TO
ASSURE CONTEMPORARY TREATMENT
FOR THOSE WHO WERE DIAGNOSED
WITH LYMPHADEMA AND THOSE
RELATED DISORDERS, AND THEY HAVE
BEEN INSTRUMENTAL IN THE
DEVELOPMENT OF LANA AND WE'VE
ALSO BEEN ABLE TO ACCESS FUNDS
THROUGH THE LONGABERGER
FOUNDATION TO SUPPORT SOME OF
OUR ACTIVITIES OVER THE TIME
THAT THE ORGANIZATION HAS BEEN
IN EXISTENCE.
BOTH THE BOARD OF DIRECTORS FOR
LANA AND THOSE CERTIFIED BY THE
ORGANIZATION ARE REPRESENTED BY
A NUMBER OF HEALTHCARE
DISCIPLINES, INCLUDING
PHYSICIANS AND NURSES, BUT THE
VAST MAJORITY OF THOSE WHO SIT
FOR THE LANA CERTIFICATION EXAM
ARE PHYSICAL THERAPISTS AND
OCCUPATIONAL THERAPISTS, AS WELL
AS PHYSICAL THERAPY ASSISTANTS
AND CERTIFIED PHYSICAL THERAPY
ASSISTANTS, AS WELL AS A NUMBER
OF OTHER HEALTHCARE PROVIDERS.
OUR MISSION IS REALLY TO PROMOTE
THE STANDARDS FOR THE
CERTIFICATION OF HEALTHCARE
PROVIDERS, REALLY TO PROMOTE
AWARENESS AND THE SCIENCE OF
LYMPHOLOGY.
OUR EXAM TESTS THE HEALTHCARE
PROVIDERS' KNOWLEDGE OF THE
LYMPHATIC SYSTEM INCLUDING
ASSESSMENT, TREATMENT PLANNING
AND THE IMPLEMENTATION OF
INTERVENTIONS TO HELP RESTORE OR
MAXIMIZE FUNCTION AND IMPROVE
THE QUALITY OF LIFE.
AS DR. SMITH MENTIONED, WE
RECENTLY PARTNERED AGAIN WITH
THEM AS WELL AS THE WASHINGTON
UNIVERSITY SCHOOL OF MEDICINE IN
ST. LOUIS.
THIS WAS THE 25TH ANNIVERSARY OF
THAT ORIGINAL AMERICAN CANCER
SOCIETY WORKSHOP, AND IT WAS
REALLY A SUMMIT THAT WAS
DEDICATED TO ADVANCING
LYMPHADEMA MANAGEMENT.
THIS EVENT BROUGHT TOGETHER
EXPERTS IN THE FIELD OF
LYMPHOLOGY FROM THE FRONT LINES
OF HEALTHCARE, RESEARCH AND
ADVOCACY GROUPS.
IT PROVIDED A PLATFORM TO
EXCHANGE INNOVATIVE IDEAS IN
RESEARCH AS WELL AS HIGHLIGHT
THE GAPS IN THE LITERATURE AS IT
RELATES TO PATIENT CARE.
WE'RE CURRENTLY WORKING WITH THE
JOURNAL OF MEDICAL ONCOLOGY TO
PUBLISH THESE WORKS IN AN OPEN
ACCESS FORMAT INCLUDING SORT OF
EXPERT CONSENSUS STATEMENTS THAT
ARE REALLY HIGHLIGHTING THE
EXISTING CAPS EXISTING GAPS IN E
TO ACHIEVE EFFECTIVE OUTCOMES.
WE'VE ALSO BEEN A STAUNCH
ADVOCATE OF THE LYMPHADEMA
TREATMENT ACT WHICH WOULD NOT
HAVE BEEN PASSED OR IMPLEMENTED
WITHOUT THE TIRELESS EFFORTS OF
HEATHER FERGUSON AND THE
LYMPHADEMA ADVOCACY GROUP.
THIS WAS A HUGE VICTORY FOR THE
LYMPHADEMA COMMUNITY AS IT HAS
PROVIDED WELL-NEEDED ACCESS TO
MEDICAL SUPPLIES TO MANAGE
LYMPHADEMA.
WHILE THIS HAS BEEN PASSED, THE
PT AND OT COMMUNITIES CONTINUE
TO STRUGGLE WITH PROPER
REIMBURSEMENT FOR THE CARE THAT
THEY PROVIDE TO THOSE PATIENTS,
AS WELL AS BEING REIMBURSED
FORFEITING OFFORFITTING OF THOSD
THERE'S STILL FRUSTRATION ON THE
SIDE OF HEALTHCARE PROVIDERS AND
BEING ABLE TO ACCESS THOSE
NECESSARY ITEMS EVEN WITH
INSURANCE REIMBURSEMENT.
SO WHILE A HUGE WIN FOR THE
COMMUNITY, WE STILL HAVE SOME
STEPS THAT WE NEED TO TAKE.
WHILE LANA IS NOT INHERENTLY
DIRECTLY INVOLVED IN SIGNIFICANT
RESEARCH PER SE, IT IS CLEAR TO
US AS WE PREPARE OUR
CERTIFICATION EXAM AND AS WE
WORK WITH THE TRAINING PROGRAMS,
THERE ARE SIGNIFICANT GAPS AND I
THINK IT WAS HIGHLIGHTED EARLIER
THIS MORNING THAT WE NEED TO DO
SOME DEIMPLEMENTATION OF SOME
EXISTING EDUCATIONAL MODELS IN
TERMS OF WHAT WE'RE DOING IN
TERMS OF JUST TREATING THIS
PATIENT POPULATION, SO I'M
REALLY HONORED TO BE A PART OF
THIS CONVERSATION AS I THINK WE
HAVE A LONG WAY TO MOVE FORWARD
IN TERMS OF BEING ABLE TO
EDUCATE PROVIDERS IN ORDER TO
REACH MAXIMUM OUTCOMES FOR OUR
PATIENTS.
SO THANK YOU.
>> THANK YOU, ELIZABETH.
OUR NEXT REPRESENTATIVE IS
DR. HILLARY HAFTEL, REPRESENTING
THE AMERICAN ACADEMY OF
PEDIATRICS.
>> GOOD MORNING, OR GOOD
AFTERNOON DEPENDING ON WHERE YOU
ARE.
THANK YOU VERY MUCH FOR
INCLUDING ME IN THIS PANEL, IN
THIS CONVERSATION.
I HAVE TO ADMIT THAT I AM A
PEDIATRIC AND ADULT
RHEUMATOLOGIST, SO I AM -- WHILE
I HAVE SOME EXPOSURE OBVIOUSLY
TO THIS BEVY OF DISEASES, I'M
CERTAINLY NOT A CONTENT EXPERT,
BUT I'M HAPPY TO BE HERE AND TO
DESCRIBE WHAT WE DO AT THE
ACADEMY FOR EDUCATION AND
PROMOTING THE UNDERSTANDING OF
DISEASES SUCH AS THIS WITH OUR
COMMUNITY.
SO THE AMERICAN ACADEMY OF
PEDIATRICS IS OVER 90 YEARS OLD,
AND HAS BEEN CENTERED SINCE ITS
INCEPTION ON THREE MAIN PILLARS,
THAT OF POLICY, EDUCATION AND
ADVOCACY.
SO EDUCATION, I'M THE SENIOR
VICE PRESIDENT FOR EDUCATION,
AND WE SPENT A LOT OF TIME
IDENTIFYING AND DEVELOPING
MATERIALS TO FILL GAPS IN
KNOWLEDGE.
WE SERVE ALMOST 67,000
PEDIATRICIANS ACROSS THE
COUNTRY.
WE ALSO SERVE ALLIED HEALTH
PROFESSIONALS, PAs, NURSE
PRACTITIONERS, PEDIATRIC NURSES,
PEDIATRIC PHARMACOLOGISTS,
SOCIAL WORKERS, A VERY WIDE
RANGE OF HEALTH PROFESSIONALS
THAT WORK IN A COLLABORATIVE WAY
TO IMPROVE POLICY, ADVOCACY AND
EDUCATION IN THE U.S. AND ABR
ABROAD.
SO WHEN IT DO COMES TO WHAT WE ,
WE HAVE A NUMBER -- WE SERVE
GENERAL PEDIATRICIANS, BUT WE
ALSO HAVE A NUMBER OF SECTIONS
OF SUBSPECIALISTS,
HEMATOLOGY/ONCOLOGY IS THE GROUP
THAT IS VERY INVESTED IN
PARTICIPATING IN THIS PROJECT
AND IN THIS COLLABORATIVE.
AND OUR ONE MEMBER WHO IS VERY
INTERESTED IN THIS APOLOGIZES AS
SHE COULDN'T JOIN ME BECAUSE SHE
IS ACTUALLY OUT OF COUNTRY RIGHT
NOW.
BUT THEY WORK VERY HARD AT
IDENTIFYING -- EACH SECTION
WORKS REALLY HARD ON IDENTIFYING
WHAT KNOWLEDGE GAPS MAY EXIST,
DEVELOPING AN -- DEVELOPING
POLICY, CLINICAL REPORTS AND
TECHNICAL REPORTS REGARDING THIS
INFORMATION AND DISSEMINATING
THEM TO THE MEMBERSHIP AND
BEYOND.
IN ADDITION, THE SECTIONS AND
MEMO MEMBERS COLLABORATE WITH TE
DEPARTMENT OF EDUCATION IN
DEVELOPING EDUCATIONAL
MATERIALS, AND THOSE ARE WIDE
RANGING FROM THINGS LIKE
WEBINARS ALL THE WAY TO
ASYNCHRONOUS COURSES, LIVE
COURSES, EDUCATION AS YOU MAY
KNOW IS FOCUSING MORE ON MICRO
LEARNING, SO SMALL AMOUNTS OF
EDUCATION OVER TIME THAT'S
EASILY ACCESSIBLE TO OUR
MEMBERS, AND WE ALSO PARTNER
WITH GOVERNMENT AGENCIES TO
DEVELOP EDUCATIONAL MATERIALS
THOUGHT TO BE IMPORTANT AND IN
THE ABILITY TO BE ABLE TO REACH
OUR MEMBERS AND IMPROVE
UNDERSTANDING OF CARE AS THINGS
SUCH AS LYMPHATIC DISEASES.
SO WE HAVE A WIDE RANGE OF
EDUCATIONAL MODALITIES THAT WE
CAN USE, AND FRANKLY IN MY
EXPERIENCE, YOU USE MORE THAN
ONE, BECAUSE PEOPLE HAVE
DIFFERENT LEARNING PURPOSES AND
LEARNING STYLES AND SINCE WE ARE
SPREAD ACROSS THE COUNTRY AND
BEYOND, WE ALSO HAVE A LOT OF
VIRTUAL EDUCATION THAT WE DO,
PARTICULARLY FOR OUR REMOTE
MEMBERS WHO ARE OUT IN RURAL
COMMUNITIES OR DON'T HAVE AS
EASY ACCESS TO ACADEMIC CENTERS
WHERE THE PRACTITIONERS ARE AND
WHERE THINGS MAY BE CENTERED.
SO WE'VE BUILT QUITE A NICE
INFRASTRUCTURE AND I'M EXCITED
ABOUT THE POSSIBILITY OF
PARTICIPATING IN HELPING
DISSEMINATE INFORMATION AND
EDUCATION ABOUT THIS IMPORTANT
TOPIC TO OUR MEMBERS.
SO THANK YOU.
>> THANK YOU, HILLARY.
THAT WAS WONDERFUL.
OUR NEXT REPRESENTATIVE IS
DR. LISA HO HOWLEY, REPRESENTING
THE AMERICAN ASSOCIATION OF
MEDICAL COLLEGES.
>> THANK YOU SO MUCH.
DELIGHTED TO BE HERE.
I APPRECIATE THE OPPORTUNITY TO
TELL US AND LEARN FROM ALL OF
AND SHARE A LITTLE ABOUT MY
ORGANIZATION, THAT'S THE
ASSOCIATION OF AMERICAN MEDICAL
COLLEGES.
AS WAS JUST MENTIONED.
SO BY FIRST OF ALL MYSELF I AM
THE SENIOR DIRECTOR FOR
TRANSFORMING EDUCATION, I'M AN
EDUCATIONAL PSYCHOLOGIST BY
TRAINING AND HAVE WORKED MY
ENTIRE CAREER IN APPLYING
EDUCATIONAL PSYCHOLOGY TO
TEACHING AND LEARNING IN
MEDICINE AND OTHER HEALTH
PROFESSIONS.
SO I WANT TO SHARE A LITTLE BIT
ABOUT THE ORGANIZATION FOR THOSE
OF YOU WHO AREN'T FAMILIAR WITH
US.
WE'RE BASED IN WASHINGTON, D.C.
WE'VE BEEN AROUND A LONG TIME,
SINCE THE LATE 1800s, AND OUR
MEMBERS ARE ACTUALLY MEDICAL
SCHOOLS, THEY'RE MEMBER
INSTITUTIONS, SO THEY'RE
CURRENTLY 171 MEMBER MEDICAL
SCHOOLS OF THE AAMC, BUT ALSO
OVER 400 TEACHING HOSPITALS AND
HEALTH SYSTEMS, AS WELL AS OVER
70 ACADEMIC AND SPECIALTY
SOCIETIES.
THOSE ORGANIZATIONS AND
INSTITUTIONS MAKE UP NEARLY
2,000 -- 200,000, EXCUSE ME,
FULL TIME FACULTY.
ALSO ABOUT 150,000 RESIDENT
TRAINEES OR RESIDENT PHYSICIANS
AND ABOUT 100,000 MEDICAL
STUDENTS.
WE WORK VERY CLOSELY WITH OUR
SIBLING ORGANIZATION ACOM,
THAT'S THE AMERICAN ASSOCIATION
OF COLLEGES OF OSTEOPATHIC
MEDICINE, SO THOSE ARE OF COURSE
THE DO TRAINING PROGRAMS,
ALTHOUGH THEY'RE A DIFFERENT
MEMBER ORGANIZATION, WE DO WORK
VERY CLOSELY WITH THEM, WHICH IS
WONDERFUL, AND I ALSO WANT TO
MENTION IPEC, WHICH IS ANOTHER
ORGANIZATION WE ALSO ARE
ACTUALLY A FOUNDING MEMBER OF
AND THAT'S THE INTERPROFESSIONAL
EDUCATION COLLABORATIVE.
THAT ORGANIZATION IS NOW MADE UP
OF 23 PROFESSIONS, AND ACROSS
ALL OF HEALTHCARE ACTUALLY, SO
DO A LOT OF WORK IN REGARDS TO
FACULTY DEVELOPMENT ACROSS
PROFESSIONS IN SUPPORTING MORE
EFFECTIVE TEACHING AND
CONTEMPORARY PRACTICES IN HEALTH
PROFESSIONS EDUCATION.
SO THAT'S JUST A LITTLE BIT
ABOUT MY O THE AAMC, AS WELL AS
IPEC.
I ALSO WANTED TO MENTION ONE OF
OUR TWO JOURNALS BECAUSE I THINK
IT'S VERY RELEVANT HERE AND WE
HAVE A NUMBER OF RELEVANT
RESOURCES AND PUBLICATIONS
WITHIN WHAT WE CALL MEDIPORTAL,
ONE OF OUR TWO JOURNALS WITHIN
THE ASSOCIATION.
IT'S A UNIQUE PUBLICATION IN
THAT IT OFFERS STANDALONE
COMPLETE TEACHING OR LEARNING
MODULES THAT HAVE BEEN
IMPLEMENTED AND IMPORTANTLY
EVALUATED WITH PHYSICIAN
TRAINEES OR OTHER HEALTH
PRACTITIONERS.
SO THOSE SUBMISSIONS ARE FREELY
AVAILABLE AND ACCESSIBLE, AND WE
WOULD LOVE TO CONTINUE TO BUILD
THE COLLECTION AROUND LYMPHATICS
AND LYMPHADEMA.
SO THERE ARE A NUMBER OF
PUBLICATIONS WITHIN THAT
COLLECTION NOW, BUT WE WOULD
LOVE TO SEE EVEN MORE.
SO THANK YOU FOR THIS
OPPORTUNITY, AND AGAIN, LOOK
FORWARD TO BEING HERE AND BEING
PART OF THE CONVERSATION.
>> THANK YOU SO MUCH.
NEXT WE'RE GOING TO HEAR FROM
DRS. CLAIRE DAVIS AND CHRIS
WILSON.
I'LL ASK YOU TO DIVIDE YOUR TIME
ACCORDING TO YOUR WISHES.
>> THANK YOU, EVERYONE.
GREAT TO SEE YOU, IT WAS A GREAT
SESSION AND I'M GLAD TO BE PACK
BBACKFOR THE ACH NOON.
I'M A DOCTOR OF SCIENCE AND
PHYSICAL THERAPY.
I AM ALSO THE PRESIDENT OF THE
ACADEMY OF ONCOLOGIC PHYSICAL
THERAPY.
I'M A RESEARCHER DOING RESEARCH
IN ADVANCED DISEASE WITH CANCER
SPECIFICALLY ADAPTATIONS FOR
PHYSICAL THERAPISTS WORKING WITH
PALLIATIVE CARE, INCLUDING
LYMPHADEMA.
I'M AN ASSOCIATE PROFESSOR AT
OAKLAND UNIVERSITY AND DIRECTOR
OF CLINICAL EDUCATION, WHICH IS
IN METRO DETROIT, MICHIGAN IN
THE UNITED STATES.
AND I ALSO PRACTICE AS A CL
NICHE IN MICHIGAN WHERE WE
FOUNDED THE FIRST CLINICAL
RESIDENCY IN ONCOLOGY FOR
PHYSICAL THERAPISTS IN THE
UNITED STATES.
I'M GOING TO TALK A LITTLE ABOUT
THE APTA AND ITS ACADEMY AND
THEN I'M GOING TO PASS IT OFF TO
TALK ABOUT THE CLINICAL PRACTICE
GUIDELINE INITIATIVE WE'VE BEEN
SPENDING A LOT OF TIME ON.
SO APTA IS NOT QUITE AS OLD AS
AMC BUT WE WERE FOUNDED IN 1921.
WE HAVE OVER 100,000 PHYSICAL
THERAPISTS AND PHYSICAL
THERAPIST ASSISTANT MEMBERS.
IT IS THE LARGEST PHYSICAL
THERAPY CLINICAL AND SCIENTIFIC
ORGANIZATION IN THE UNITED
STATES.
THE APTA'S MISSION IS TO BUILD A
COMMUNITY THAT ADVANCES THE
PROFESSION OF PHYSICAL THERAPY
TO REALLY IMPROVE THE HEALTH OF
THE ENTIRE SOCIETY.
SO WITHIN THE APTA, THERE ARE 18
SUSUBSPECIALTIES IN ACADEMIES, U
MIGHT THINK OF ORTHOPEDICS OR
KNEWOLNEUROLOGY, BUT PEDIATRICS,
GERIATRIC AND CARDIOVASCULAR AND
PULMONARY.
SO THE APTA AND ITS ACADEMY
OFFERS BOARD CERTIFICATION,
RESIDENCIES AND FELLOWSHIPS.
ESPECIALLY BOARD CERTIFICATION
AS AN ONCOLOGIC PHYSICAL
THERAPIST.
IT'S A RELATIVELY NEW BOARD
CERTIFICATION PROCESS THAT
STARTED IN ABOUT 2018, WHICH
DOES INCLUDE CONTENT IN
LYMPHADEMA DIAGNOSIS AND
MANAGEMENT.
FOR OUR RESIDENCY PROGRAMS,
THEY'RE GENERAL LIE 12 TO 20
MONTH RESIDENCIES, RESIDENTS WHO
GRADUATE FROM AN ACCREDITED
PROGRAM WILL GRADUATE WITH SOME
FOUNDATIONAL TRAINING IN
LYMPHATIC SYSTEM FUNCTION BUT
NOT NECESSARILY BE CLTs OR
OTHER CREDENTIALS WHERE YOU HAVE
SPECIALTY TRAINING.
THEY DO A LOT WITH LEGISLATIVE
ADVOCACY.
DR. CAMPIONE ALREADY TALKED
ABOUT THE TREATMENT ACT.
ONE OF OUR KEY LEADERS WAS PAULA
STOUTT HELPING TO BE AN ADVOCATE
FOR PASSAGE AND OF COURSE AFTER
PASSAGE, PROMULGATING THE RULES.
WE DO A LOT OF WORK WITH
CONTINUING EDUCATION IN PERSON
AND VIRTUAL COURSES.
MOST RECENTLY WE HAD A COUPLE OF
VIRTUAL COURSES CALLED KIND OF
WHERE LYMPHADEMA FITS INTO THE
CLINICAL CARE FOR A LITTLE BIT
MORE OF THE GENERAL LIST ON GEN.
WE HAVE SPECIAL GROUPS THAT HOST
PERIODIC WEBINARS AND THEY'RE
REALLY KIND OF SERVING AS
COLLECTIVE VOICE OF LYMPHADEMA
CLINICIANS AND RESEARCHERS.
PROBABLY ONE OF THE BIGGEST
THINGS WE TALK ABOUT IS
SCIENTIFIC ADVOCACY.
WE DO HAVE A PEER REVIEWED
JOURNAL REHABILITATION ONCOLOGY
IN THE APT ONCOLOGY ACADEMY.
A SPECIAL ISSUE A FEW YEARS AGO
FOCUSED SPECIFICALLY ON
LYMPHADEMA.
WE WERE REALLY EXCITED TO HAVE A
GUEST EDITORIAL BY ACTOR CATHY
BATES, WHO WROTE A LETTER TO THE
EDITOR AND DR. NICOLE STOUTT.
SO WE'VE BEEN SUPPORTING A LOT
OF CLINICAL PRACTICE BASED
GUIDELINES WHICH DR. DAVIS WILL
BE TALKING ABOUT.
IN ADDITION, WE ALWAYS HAVE A
IN-PERSON CONFERENCE CALLED
COMBINED SECTIONS MEETING WHICH
HOSTS ANYWHERE BETWEEN 10 TO 15,
16,000 REHABILITATION
PROFESSIONALS AND HEALTHCARE
PROVIDERS.
IT'S REALLY WELL ATTENDED, WE
ALWAYS HAVE AT LEAST FOUR OR
FIVE FULL EDUCATIONAL SESSIONS
ON LYMPHADEMA AND RESEARCH
PLATFORMS AND POSTER
PRESENTATIONS.
PROBABLY THE LAST NOTABLE THING
THAT I'LL TALK ABOUT IS WE'VE
BEEN SPENDING A LOT OF TIME ON
REALLY ESTABLISHING WHAT IS
ENTRY LEVEL PRACTICE FOR
PHYSICAL THERAPISTS WHEN THEY
GRADUATE WHEN IT COMES TO
ONCOLOGY AND LID.
LYMPHADEMA.
SO WE JUST PUBLISHED THOSE
GUIDELINES AFTER A MODIFIED
DELPHI STUDY WE'VE BEEN WORKING
ON AND IT'S GOING TO BE COMING
OUT IN THE APTA VERY SOON.
SO WITH THAT, I'LL PASS IT OVER
TO DR. DAVIS.
>> THANK YOU, CHRIS.
GOOD AFTERNOON, GOOD MORNING,
WHEREVER YOU ARE.
I'M CLAIRE.
I'M A PHYSICAL THERAPIST OF 30
YEARS.
I HAVE BEEN 20 YEARS HERE IN
LEXINGTON, KENTUCKY HERE AT A
COMMUNITY HOSPITAL, SO I HAVE A
UNIQUE ROLE OF BEING A RESEARCH
CONSULTANT NOW.
AND AS PART OF THAT ROLE, I DO
HAVE TIME TO DO SOME LYMPHADEMA
RESEARCH.
SO I AM REPRESENTING THE APTA
AND THE ONCOLOGIC ACADEMY.
AND I GOT STARTED IN MY RESEARCH
IN LYMPHADEMA AND THE CANCER
REHAB WORLD.
WHAT THE APTA STARTED WITH WAS
EDGE OUTCOME MEASURES AND WE
STARTED THAT BACK IN 2012, AND
EDGE STANDS FOR EVALUATION,
DATABASE, TO GUIDE EFFECTIVE OUT
OUTCOME RECOMMENDATIONS.
SO THERE WAS A CALL FOR
VOLUNTEERS, COMBINED SECTION AS
CHRIS JUST MENTIONED, AND A
GROUP OF US GOT STARTED LOOKING
AT OUTCOME MEASURES THAT WE USED
IN THE OUTPATIENT ARENA, MOSTLY
TO BEGIN WITH, AND THEN THIS IS
WHAT WAS USED IN THE ORTHOPEDIC
POPULATION, WHAT CAN WE APPLY TO
THOSE WITH CANCER AND THEN ON TO
THOSE WITH -- WHO DEVELOP
LYMPHADEMA.
AND ALL OUR WORK SO FAR THAT
I'VE BEEN INVOLVED IN IS IN
BREAST CANCER AND BREAST
CANCER-RELATED LYMPHADEMA
BECAUSE THAT'S WHERE WE HAVE THE
MAJORITY OF THE RESEARCH AND THE
EVIDENCE.
SO WE DID OUTCOME MEASURES, EDGE
DOCUMENTS THAT RECOMMENDED OUT
COME MEASURES FOR THE SHOULDER,
FOR STRENGTH, MUSCLE ENDURANCE,
AND THEN WE WENT ON TO
FUNCTIONAL MOBILITY.
WE THEN MOVED ON TO THOSE WITH
PROSTATE CANCER AND DEVELOPED
EDGE DOCUMENTS FOR THOSE, AND
THEN WE STARTED ON
CANCER-RELATED FATIGUE OUT COME
MEASURES.
NEXT IN 2015, LOOKING IN THE
UPPER QUADRANT, AT THAT TIME IT
INCLUDED THE HEAD, THE NECK,
UPPER QUADRANT, TRUNK, UPPER
EXTREMITY.
AND FROM THAT WORK, WE THEN WENT
ON TO MOVE INTO THE DIRECTION OF
CLINICAL PRACTICE GUIDELINES.
AND AT THAT TIME, THE AMERICAN
PHYSICAL THERAPY ASSOCIATION WAS
PROVIDING SOME SMALL FUNDING TO
GET US STARTED ON LOOKING AT THE
EVIDENCE AND LOOKING AT MOVING
INTO THE CLINICAL PRACTICE
GUIDELINES.
SO BACK IN 2017, I WAS INVOLVED
IN PUBLISHING CLINICAL PRACTICE
GUIDELINE ON DIAGNOSING
SECONDARY UPPER QUADRANT
LYMPHADEMA BECAUSE OF CANCER,
AND WE LOOKED TO THE
RELIGHTABILITY, VALIDITY AND
DIAGNOSTIC ACCURACY OF MEASURES
USED TO DIAGNOSE LYMPHADEMA.
I CAN TELL YOU RIGHT NOW THAT WE
ARE WORKING ON UPDATES OF THAT
DOCUMENT BECAUSE CLINICAL
PRACTICE GUIDELINES ARE UPDATED
EVERY FIVE YEARS, BUT I CAN TELL
YOU IT CAN TAKE A COUPLE YEARS
TO JUST GET THROUGH THE EVIDENCE
TO WORK TOWARDS THE CLINICAL
PRACTICE GUIDELINE.
SO WE'RE UPDATING THAT RIGHT
NOW.
THE SECOND PRACTICE GUIDELINE WE
DEVELOPED WAS IN 2018 AND THAT
WAS ON INTERVENTIONS FOR BREAST
CANCER RELATED LYMPHADEMA.
SO MOST RECENTLY, I WAS INVOLVED
IN THE AMERICAN CA AMERICAN CANY
AND LANA MEETING BACK IN
OCTOBER, AND WE HAVE BEEN
WORKING ON DEVELOPING THE
CONSENSUS DOCUMENTS FOR CDT AND
MANUAL LYMPH DRAINAGE, SO THAT'S
THE INTERVENTION WORK I'VE BEEN
DOING OVER THE LAST COUPLE OF
YEARS.
BUT MY EXPERTISE HERE IS TO TRY
AND HELP GET SOME OF THIS
INFORMATION FROM OUR CLINICAL
PRACTICE GUIDELINES AND OTHER
EVIDENCE-BASED RECOMMENDATIONS
INTO THE CURRICULUM FOR -- AND
INCREASED KNOWLEDGE AND
AWARENESS THAT THESE DOCUMENTS
ARE OUT IN CIRCULATION, AS WELL
AS TO HELP IDENTIFY AREAS FOR
RESEARCH, BECAUSE IN SOME OF THE
AREAS WE LOOKED AT, WE ARE
LACKING IN SOME DEPTH OF THE
RESEARCH IN THERE, SO THAT'S MY
BACKGROUND, AND I REALLY
APPRECIATE THE OPPORTUNITY.
>> THANK YOU, DR. DAVIS.
WE LOOK FORWARD TO DISCUSSING
THAT MORE IN THE OPEN PART OF
THE SESSION.
OUR NEXT PRESENTATION WILL BE
FOR THE AMERICAN SOCIETY OF
BREAST SURGEONS AND ITS
FOUNDATION.
BETH BOYD IS NOT ABLE TO ATTEND
BUT DR. SARAH MCLAUGHLIN WILL
REPRESENT BOTH ASPECTS.
>> HI, EVERYONE.
THANKS SO MUCH FOR INCLUDING US.
JUST A LITTLE BIT OF BACKGROUND
ABOUT THE AMERICAN SOCIETY OF
BREAST SURGEONS.
WE ARE AN ORGANIZATION OF ABOUT
3,000 BREARS SURGEONS ACROSS THE
COUNTRY.
THE ORGANIZATION IS 25 YEARS OLD
JUST CELEBRATING ITS 25TH
ANNIVERSARY.
IN ADDITION TO SUPPORTING BREAST
SURGEONS WHICH BY THE WAY CAN
ACHIEVE THAT PATHWAY EITHER
THROUGH A DEDICATED BREAST
FELLOWSHIP, A COMPLEX GENERAL D.
OR BY BEING GENERAL SURGEONS, IN
FACT GENERAL SURGEONS REPRESENT
ALMOST ABOUT 50% OF OUR
ORGANIZATION.
SO IT IS AN IMPORTANT AUDIENCE
WITH RESPECT TO BREAST SURGERY
AND EVERYTHING THAT THAT
ENTAILS.
IN ADDITION TO THAT, WE DO HAVE
AN APP TRAINING ARM AS WELL SO
WE DO HAVE A PATHWAY FOR
ADVANCED PRACTICE PROVIDERS TO
BECOME EXPERTS IN BREAST CARE
AND FACILITATING THAT CARE WITH
THEIR SURGEON COUNTERPARTS.
IN ADDITION TO THAT, THE
AMERICAN SOCIETY OF BREAST
SURGEONS ALONG WITH THE SOCIETY
OF SURGICAL ONCOLOGY CO-SPONSORS
A TOTAL OF 65 BREAST SURGICAL
FELLOWSHIPS ACROSS THE COUNTRY
AND THIS IS IMPORTANT BECAUSE IT
ALLOWS US TO CONTRIBUTE TO
CURRICULUM DESIGN, CASE MINIMUMS
AND CERTIFICATION WHICH SPANS
THE LIFECYCLE OF BREAST CANCER
REALLY FROM PREVENTION THROUGH
SURVIVORSHIP, WHICH, THEREFORE,
OBVIOUSLY LYMPHADEMA IS
INCORPORATED WITHIN THAT.
THE ORGANIZATION IS VERY
HANDS-ON.
WE HAVE MANY HANDS-ON TRAINING
COURSES FOR SURGEONS,
SPECIFICALLY RELATED TO AXILLARY
DISEASE AND AXILLARY DISEASE
MANAGEMENT, WHICH INCLUDES THEN
DIFFERENT STRATEGIES FROM A
SURGICAL PERSPECTIVE RELATED TO
PREVENTION AND TREATMENT OF
LYMPHADEMA.
THAT THEN KIND OF TRANSLATES
INTO WEBINARS HE AS WELL AS
ENDURING MATERIALS AND
EDUCATIONAL PLATFORMS AND
MATERIALS THAT ARE AVAILABLE ON
OUR SITE FOR ALL OF OUR BREAST
SURGEONS TO ACCESS.
WE HAVE HAD A FEW EXPERT PANELS
AND ESTABLISHED SOME GUIDELINES
AND POSITION PAPERS SPECIFICALLY
RELATED TO LYMPHADEMA, MOST
RECENT VERSION OF THAT WAS
PUBLISHED A FEW YEARS AGO.
I WOULD SAY REALLY WHAT THE
ORGANIZATION DOES WELL IS
ADVOCACY FOR EDUCATION WITHIN
THIS SPACE, REALLY LOOKING AT
EMBRACING THINGS LIKE
PROSPECTIVE SCREENING AND
MONITORING FOR THESE PATIENTS
AND ACKNOWLEDGING THAT THAT'S A
CRITICAL COMPONENT TO HOW
DIAGNOSING AND TREATING THESE
PATIENTS LONG TERM.
ALSO THE ORGANIZATION IS VERY
ACTIVE IN TERMS OF CLINICAL
TRIAL PARTICIPATION, SO WHEN
THERE ARE TRIALS THAT ARE IN
SPACES THAT ARE IMPORTANT TO US,
THERE'S ACTIVE ENROLLMENT IN
THOSE AND SUPPORT FOR THOSE
TRIALS, AND WE'VE SEEN THAT WITH
SOME OF THE RECENT ALLIANCE
TRIALS RELATED TO SURGICAL
OUTCOMES OF AXILLARY SURGERY
WITH AND WITHOUT AXILLARY
REVERSE MAPPING AND LYMPHOVENOUS
BYPASS.
WITH THAT I WOULD SAY THE
ORGANIZATION VERY MUCH EMBRACES
TECHNOLOGY IN THIS SPACE AND IN
MANY SPACES AND IS LOOKING FOR
WAYS TO PUSH THE RESEARCH AND
THE SCIENCE FORWARD.
WE DO PARTICIPATE IN A PEER
REVIEWED JOURNAL ALONG WITH THE
SOCIETY OF SURGICAL ONCOLOGY
WHICH IS THE ANNALS OF SURGICAL
ONCOLOGY.
WITH THAT, I WOULD SAY SOME OF
THE MOST RECENT COURSES THAT WE
HAVE HAD HAVE BEEN AROUND, YOU
KNOW, THINGS LIKE AXILLARY
REVERSE MAPPING AND THE GOALS
AND VALUES OF LYMPHOVENOUS
BYPASS FROM A SURGICAL
PERSPECTIVE.
SO WE'RE HAPPY TO BE PART OF THE
PANEL, AND LOOK FORWARD TO THE
DISCUSSION.
THANK YOU.
>> THANK YOU, SARAH.
NEXT WE'RE GOING TO HEAR FROM
DR. CARLOS GONZALES,
REPRESENTING THE AMERICAN BOARD
OF FAMILY MEDICINE.
>> GOOD MORNING FROM OUT HERE IN
THE WEST.
I AM -- JUST SO YOU KNOW WHO I
AM, I'M A NATIVE AMERICAN,
PASCOYAKI AND MY MOTHER IS
MEXICAN.
I'M HERE REPRESENTING THE
AMERICAN BOARD OF FAMILY
MEDICINE AS CHAIR-ELECT.
THE BOARD IS REALLY
CERTIFICATION AND CREDENTIALING
ORGANIZATION.
WE'VE BEEN IN EXISTENCE 55
YEARS.
WE'VE BEEN IN EXISTENCE SINCE
1969.
I MYSELF AM A PRACTICING FAMILY
PHYSICIAN, 40 YEARS OF PRACTICE
IN MULTIPLE SITES, ON THE
RESERVATION, IN RURAL AREAS,
URBAN AREAS AND IN ACADEMIC
CENTERS.
I'M CURRENTLY THE ASSOCIATE DEAN
FOR INDIGENOUS AFFAIRS AT THE
COLLEGE OF HEALTH SCIENCES AT
THE UNIVERSITY OF ARIZONA, AND
I'M AN ASSOCIATE PROFESSOR OF
FAMILY MEDICINE AT THE
UNIVERSITY OF ARIZONA COLLEGE OF
MEDICINE, TUCSON.
THE EPFM HAS APPROXIMATELY
103,000 DIPLOMATS.
WE REPRESENT ABOUT 70% OF ALL
PRIMARY CARE PHYSICIANS IN THE
UNITED STATES.
WE'VE BEEN DOING SOME RESEARCH
TO TRY TO FIGURE OUT THE EXTENT
OF OUR KNOWLEDGE OF THIS
DISEASE, AND DISEASE PROCESS,
AND PRACTICE ANALYSIS OF
APPROXIMATELY 100,000 DIPLOMATS
WITH 50% RESPONSE RATE
DEMONSTRATED THAT 57% OF THE
SURVEY RESPONDENTS SAW THIS
CLINICAL ISSUE OF LYMPHADEMA
ABOUT ONE TIME PER MONTH, ABOUT
20% OF THE RESPONDENTS SAW THIS
CONDITION ONE TIME PER WEEK.
REFLECTING ON MY OWN PERSONAL
EXPERIENCE WHEN I WAS IN
ARIZONA, IT WAS A RARE CONDITION
I SAW MAYBE ONCE, TWICE A YEAR
BECAUSE THE POPULATION THERE WAS
STABLE AND IT WAS A SMALL
POPULATION, 2500, AND THE
SERVICE AREA IS 1600 SQUARE
MILES.
HOWEVER I TALKED TO MY DAHL TER
WHO'S A FAMILY PHYSICIAN IN A
VERY BUSY UNIVERSITY, PRIMARY
CARE CLINIC IN TUCSON, AND SHE
SAYS THAT SHE AND HER COLLEAGUES
SEE LYMPHADEMA ISSUES ABOUT ONCE
A WEEK.
SO IT IS A COMMON PROBLEM IN THE
BIGGER SETTINGS.
WE NEED TO MAKE SURE THAT
EVERYBODY UNDERSTANDS THAT WE'RE
PRIMARY CARE PHYSICIANS, SO FOR
US IT'S ABOUT THE CLINICAL
ASSESSMENT AND MANAGEMENT OF
PATIENTS AS THEY PRESENT IN THE
PRIMARY CARE SETTING, AND THIS
IS A VERY DIFFERENT AND DISTINT
POPULATION FROM THOSE THAT
ATTEND OR GO TO SPECIALTY
CLINICS, SO WE NEED TO BE AWARE
OF THE FACT OF EVEN THOUGH WE
SEE THESE PATIENTS LESS
FREQUENTLY THAN OUR COLLEAGUES,
IT'S STILL AN IMPORTANT ISSUE.
WE ARE GLAD TO PARTICIPATE AND
LEARN.
AS A FAMILY DOC, I CAN TELL YOU
I ALWAYS APPRECIATE LEARNING AND
GROWING MY EXPERTISE IN ALL
ISSUES AFFECTING PATIENTS, AND I
WILL SHARE INFORMATION FROM THIS
CONFERENCE WITH MY COLLEAGUES ON
THE BOARD, BUT WE ALSO NEED TO
REMEMBER THAT THE EDUCATIONAL
MATERIALS AND PROGRAMS AND CME
IS REALLY PRODUCED BY OUR SISTER
ORGANIZATION, THE AMERICAN
ACADEMY OF FAMILY PHYSICIANS, SO
WE NEED TO COMMUNICATE ANY
RECOMMENDATIONS TO THAT
ORGANIZATION AND I WILL BE GLAD
TO DO THAT AND SHARE WHATEVER I
CAN.
ONCE AGAIN, THANK YOU FOR HAVING
ME HERE AND I'M HERE TO LEARN.
THAT WWITH THAT, I'LL PASS IT OO
THE NEXT PERSON.
>> THANK YOU, CARLOS.
THOSE ARE GREAT COMMENTS AND WE
LOVE TO DOVETAIL ON THAT IN THE
OPEN DISCUSSION.
WE DID HAVE A REPRESENTATIVE
FROM THE SOCIETY FOR
INTERVENTIONAL RADIOLOGY
INVITED, DR. BISHAY, BUT
APPARENTLY UNABLE TO MAKE IT, SO
WE'RE GOING TO GO ON TO OUR LAST
TWO PANELISTS.
EVERYBODY WHO WAS PRESENT DURING
THE MORNING SESSION KNOWS THAT
WE INVITED THESE TWO
CLINICIAN-SCIENTISTS WHO HAVE
DEVOTED THEIR CAREERS TO
PROVIDING IMPORTANT ADVANCES
THROUGH RESEARCH IN THE FIELD OF
LYMPHATIC BIOLOGY AND DISEASE,
AND WE ARE SEEKING THEIR
SPECIFIC INPUT BASED ON THE DUAL
ROLE THAT THEY HAVE AS
CLINICIANS AND SCIENTISTS, SO
I'M GOING TO ASK YOU BOTH TO,
AGAIN, BRIEFLY INTRODUCE
YOURSELF SINCE THE PANELISTS ON
PANEL B HAVE NOT YET MET YOU.
WE'LL START WITH MIIKKA VIKKULA,
PLEASE.
>> THANK YOU.
THANK YOU, STAN, FOR THE
INVITATION, IT'S A PLEASURE TO
BE HERE.
MY NAME IS MIIKKA VIKKULA.
I'M THE NEW VICE PRESIDENT OF
THE ISSVA, WHICH IS
INTERNATIONAL SOCIETY FOR THE
STUDY OF VASCULAR ANOMALIES,
WHICH ACTUALLY WAS STARTED
AROUND 1976 AND IT WAS JUST AN
EVERY SECOND YEAR SMALL MEETING
OF PEOPLE, COLLEAGUES,
INTERESTED IN MANAGEMENT AND
DIAGNOSIS OF LYMPHATIC AND
VASCULAR ANOMALIES.
AND SINCE THEN, IT HAS GROWN
INTO A VERY MULTIDISCIPLINARY
SOCIETY.
IT'S MOSTLY CLINICIANS, NOT TOO
MANY SCIENTISTS, A LITTLE BIT OF
TRANSLATIONAL PEOPLE ARE
INVOLVED IN ISSVA.
I MYSELF DID MY STUDIES IN
HELSINKI, AND THEN I WENT TO
BOSTON TO HARVARD MEDICAL SCHOOL
AS A POSTDOC, 93-97, AND THAT IS
WHEN I WAS -- OR I GOT TO KNOW
WHAT VASCULAR ANOMALIES AND
LYMPHADEMA ARE ABOUT, AND SINCE
THEN, I'VE DONE MY WHOLE CAREER
IN THIS FIELD.
SO I'M A HUMAN AND CLINICAL
GENETICIST AND WORK IN VERY
CLOSE CONNECTION WITH THE
MULTIDISCIPLINARY CENTER THAT IS
IN OUR HOSPITAL AND IT'S
ACTUALLY MY WIFE WHO'S A PLASTIC
RECONSTRUCTIVE SURGEON WHO IS
RUNNING/COORDINATING THE CENTER,
SO WE HAVE A VERY TIGHT
COLLABORATION DURING THESE 30
YEARS, AND SHE ACTUALLY ALSO WAS
IN BOSTON AT THE CHILDREN'S
HOSPITAL.
AND SO I'M CURRENTLY LAB
DIRECTOR AT THE INSTITUTE.
I'M ALSO CO-DIRECTOR OF THIS
INSTITUTE.
AND NOT ONLY I'M VICE PRESIDENT
OF THIS BUT I'M ALSO THE CHAIR
OF THE EUROPEAN NETWORK THAT IS
CALLED VASKAR, WHICH IS ALREADY
DEVELOPING CERTAIN TYPES OF
ACTIVITIES, ALSO IN EDUCATION,
AND WE WOULD LIKE TO LINK THOSE
ACTIVITIES MORE CLOSELY ALSO
WITH THE ISSVA STRUCTURE, WHICH
IS AN INTERNATIONAL STRUCTURE,
WHEREAS THIS IS A EUROPEAN-WIDE
STRUCTURE.
THE ERNs, THERE ARE ACTUALLY
24 OF THEM, AND IT REPRESENTS 48
EXPERT TEAMS IN 39 DIFFERENT
SPECIALIZED MULTIDISCIPLINARY
CENTERS, SO FROM A LITTLE BIT
TOP-DOWN SYSTEM SAYING THAT ALL
RARE DISEASES MUST BE COVERED BY
24 NETWORKS AND OURS COVERS
EVERYTHING THAT IS LYMPHATIC AND
VASCULAR, FROM VERY SMALL
VESSELS TO MARFAN AND AORTA AND
EVERYTHING IN BETWEEN AND OF
COURSE THE LYMPHATIC SYSTEM.
AND SO WHAT WE WOULD LIKE TO SEE
AND WE'RE TRYING TO DO IN BOTH
NETWORKS IS TO HAVE EDUCATION
TASK FORCES, AND INVOLVEMENT OF
PATIENTS, ESPECIALLY IN THE ERN
NETWORK, WE HAVE A VERY STRONG
INVOLVEMENT OF PATIENTS AND
DURING THE MORE OR LESS FIVE,
SIX YEARS THAT WE HAVE HAD THIS
NETWORK, WE FEEL THE INPUT AND
THE IMPORTANCE OF THAT BECAUSE
IT GIVES IDEAS AND IT SHOWS
WHERE PATIENTS FEEL THAT THE
MOST CRUCIAL QUESTIONS ARE.
AND ALSO FOR THE DISTRIBUTION OF
INFORMATION, AND AS SOME PARTS
HAVE GONE INTO THE CLINICAL
TRIALS PART, THEY HAVE AN EVEN
MORE IMPORTANT ROLE TO EXPLAIN,
TO RECRUIT PEOPLE AND EXPLAIN
THE CONTENTS.
SO I'M VERY HAPPY TO BE HERE,
ALSO IN THIS PANEL B.
I THOUGHT PANEL A WAS VERY
INTERESTING BUT I HOPE TO HEAR
SOME MORE FRUITFUL DISCUSSIONS
HERE.
SO THANK YOU VERY MUCH FOR
HAVING ME HERE.
>> THANKS SO MUCH, MIIKKA.
AND LAST BUT CERTAINLY NOT
LEAST, DR. JOEL MOSS, INTRAMURAL
INVESTIGATOR IN THE NATIONAL
HEART, LUNG AND BLOOD INSTITUTE.
>> THANK YOU, DR. ROCKSON.
SO I'M HEAD OF THE DIVISION OF
THE LABORATORY OF TRANSLATIONAL
RESEARCH IN THE HEART, LUNG AND
BLOOD INSTITUTE, SPECIFICALLY IN
THE INTRAMURAL PROGRAM.
THE INTEREST IS IN PULMONARY
DISEASE IN PARTICULAR, DISEASE
CALLED LYMPHANGIOLEIOMYOMATOSIS
OR LAM WHICH IS SPORADIC OR ALSO
THE INHERENT FORM, WHICH IS
FOUND IN TUBULAR SCLEROSUS
COMPLEX AND THIS INCLUDES BOTH
PULMONARY AS WELL AS OTHER ORG
ORGANS.
OUR RESEARCH HAS GONE -- HAS
BEEN DEVELOPED THROUGH THE NIH,
NHLBI PROGRAM IN ASSOCIATION
WITH THE CLINICAL CENTER AT THE
NIH, AND THROUGH THOSE PROGRAMS,
WE'RE ABLE TO ADMIT PATIENTS
THAT COME FROM -- THROUGHOUT THE
UNITED STATES AND OTHER PLACES
WITHOUT -- IN THE GLOBAL
ECONOMY.
THE FACT THAT WE'RE ABLE TO DO
MUCH WITH THESE PATIENTS IS
DEVELOPED BECAUSE OF OUR
INTEREST, BECAUSE OF THE
ADVOCACY OF VARIOUS
ORGANIZATIONS, IN PARTICULAR THE
LAM FOUNDATION, AND THE -- IN
TERMS OF WHAT WE'RE DOING.
IN TERMS OF PATIENT EDUCATION,
IT'S VERY IMPORTANT TO GET THE
PATIENT VOICE IN TERMS OF WHAT
WE'RE DOING.
EVERY TUESDAY NIGHT FOR PATIENTS
THAT COME FROM THROUGHOUT THE
COUNTRY TO THE NIH, I HAVE A
MEETING WHERE PATIENTS DISCUSS
VARIOUS ISSUES THAT ARE
IMPORTANT TO THEM.
THIS IS ALIGNED WITH THE PROGRAM
THAT THE FDA HAS AS WELL WHERE
WE WANT TO HEAR THE PATIENT
VOICE IN TERMS OF WHAT IS BEING
DONE.
ALSO THE LAM FOUNDATION AS WELL
AS THE TOUR LAR SCLEROSIS --
HAVE CLINICS THROUGHOUT THE U.S.
AS WELL AS THE WORLD, AND THESE
CLINICS ALSO PARTICIPATE IN
TERMS OF GIVING SPECIALIZED CARE
AS WELL AS AN OPPORTUNITY TO
UNDERSTAND BETTER WHAT PATIENT
ARE GOING THROUGH.
WITH THESE ORGANIZATIONS, IT'S
IMPORTANT TO BE ABLE TO ENROLL
PATIENTS AND SINCE IT'S A RARE
DISEASE, THE ORGANIZATIONS HELP
US IN TERMS OF RECRUITING
PATIENTS TO OUR STUDIES AT THE
NIH AND IN PARTICULAR, WE'RE
ABLE TO GET PEOPLE THAT ARE
SPECIFICALLY INTERESTED IN
VARIOUS DIFFERENT PHENOTYPES IN
THESE ORGANIZATIONS.
REGARDING LYMPHATICS, ABOUT 20%
OF THE PATIENTS THAT WE DEAL
WITH ARE FOCUSED ON LYMPHATIC
ABNORMALITIES.
IN PARTICULAR, WE FOUND THESE
PATIENTS HAVE PLEURAL EFFUSIONS,
ASCITES, A TUMOR-LIKE STRUCTURE
FOUND IN THE THORAX AS WELL AS
IN THE ABDOMEN, AND WHAT WE'VE
FOUND EARLY ON IS THAT THESE
PHENOMENON APPEAR TO RESPOND TO
TREATMENT WITH --
>> LOOKS LIKE WE LOST
CONNECTION.
LET'S WAIT FOR A SECOND.
>> THIS IS JONATHAN WITH AV.
JOEL MOSS HAS LOST CONNECTION.
>> OKAY.
PERHAPS WE'LL MOVE ON AND WE CAN
LET HIM FINISH HIS COMMENTS WHEN
HE REJOINS.
SO THAT CONCLUDES THE
INTRODUCTIONS.
NOW IDEALLY EVERYBODY KNOWS
WHO'S AT THE PARTY.
WE'RE GOING TO HAVE AN OPEN
DISCUSSION BETWEEN THE
COMMISSION MEMBERS AND THE
MEMBERS OF THE PANEL BECAUSE
CROWD CONTROL IS A LITTLE BIT
DIFFICULT IN THE ZOOM, I'M GOING
TO TAKE THE PREROGATIVE OF
ASKING MAYBE A LEADING QUESTION
TO THE PANELISTS AS I DID IN THE
MORNING SESSION.
I THINK WE'VE IDENTIFIED MAJOR
THEMES IN THIS LYMPHATIC DISEASE
CONUNDRUM WHICH INCLUDE THE
ABILITY TO PROVIDE EDUCATION
BOTH TO HEALTHCARE PROVIDERS AND
TO PATIENTS, TO PROVIDE
RESOURCES FOR PATIENTS AND
ACCESS TO THOSE RESOURCES AND TO
SUPPORT THE INVESTIGATIVE
PLATFORM SO THAT WE BECOME MORE
KNOWLEDGEABLE OVER TIME.
SO I'D LIKE TO ASK THE
PANELISTS, PERHAPS WE CAN START
WITH THE PROBLEM OF EDUCATION,
WHICH WE DISCUSSED IN GREAT
DETAIL IN THE MORNING SESSION AS
WELL AND ASK FROM THE VANTAGE
POINT OF THE ORGANIZATION THAT
YOU REPRESENT, HOW CAN YOU
PARTNER WITH US AS A COMMISSION
TO HELP US FOSTER THE MISSION
THAT WE'RE TRYING TO ACCOMPLISH
AND GIVE US INPUT THAT WILL BE
MEANINGFUL TO THE ADVISORY
COUNCIL OF NHLBI AS WE PROVIDE
OUR FINAL REPORT BASED UPON THE
DELIBERATIONS OF THIS
COMMISSION.
SO OPEN -- I'LL OPEN THE FLOOR
TO ANYBODY WHO WOULD LIKE TO
BEGIN TO COMMENT ON THAT.
NO HANDS RAISED?
THIS IS OUR CHANCE TO HEAR FROM
YOU.
YES, DR. HOWLEY.
>> THANK YOU.
TOOK ME A MINUTE TO FIND MY
HAND-RAISING BUTTON.
I APPRECIATE THE QUESTION.
ONE THING, AND I BRIEFLY
MENTIONED THIS IN MY OPENING
REMARK AND NOTE ABOUT
METAPORTAL, ONE OF OUR TWO
PUBLICATIONS, WE WOULD LOVE TO
SEE THE NUMBER OF RESOURCES AND
EDUCATIONAL TOOLS GROW IN THIS
AREA.
YOU ALL ARE THE EXPERTS, THE
COMMUNITY THAT YOU WORK WITH ARE
THE EXPERTS IN THIS SPACE.
OUR MEDICAL EDUCATORS WHO ARE
LOOKING TO THE EXPERTS TO THEN
TRANSLATE THAT INFORMATION AND
THEN APPLY THAT, INTEGRATE IT
INTO THE PARTICULARLY EARLY
CURRICULUM OF THE MEDICAL SCHOOL
WOULD LOVE YOUR RESOURCES AND
METAPORTAL IS FREQUENTLY WHERE
THEY FIRST GO TO LOOK FOR THEM,
FOR WHAT'S AVAILABLE, WHAT'S
EVIDENCE-BASED, PEER REVIEWED,
FOR EXAMPLE, SO NOT ONLY AN
OPPORTUNITY TO INCREASE THE
SCHOLARSHIP AMONGST THE EXPERTS
IN THIS SPACE, BUT ALSO MAKE
THOSE RESOURCES, MODULES,
EDUCATIONAL TOOLS AND RESOURCES
MORE ACCESSIBLE TO OUR
COMMUNITY, WHO ARE SEEKING THEM
OUT.
AND IT'S NOT JUST EDUCATORS OF
PHYSICIANS, BUT WE DO HAVE OTHER
HEALTH PROFESSIONALS OF COURSE
WHO ARE ACCESSING THOSE TOOLS
AND RESOURCES AS WELL.
SO THAT IS ONE IDEA AND
SOMETHING WE WOULD LOVE TO SEE
AND HAVE WANTED TO SEE GROW FOR
QUITE A WHILE, SO THANK YOU.
>> IF I CAN ASK A SPECIFIC
QUESTION TO DOVETAIL ON THAT
BECAUSE WE ACTUALLY TOUCHED ON
MEDICAL CURRICULAR REFORM THIS
MORNING, ARE THERE AVENUES
WHEREBY THE AAMC CAN HELP TO
MORE FORMALLY INFLUENCE WHAT THE
VARIOUS MEDICAL COLLEGES ARE
EXPECTED TO TEACH OR PERHAPS
ENTREATED TO TEACH IF IT'S
NOT -- WE ALL RECOGNIZE THAT THE
CURRICULUM FOR FORMAL LYMPHATIC
EDUCATION IS RELATIVELY
DIMINUTIVE IN CURRENT STANDARDS,
AND ARE THERE AVENUES THAT ARE
OPEN THAT WE CAN INFLUENCE
THROUGH THE NIH, FOR EXAMPLE?
>> THANK YOU FOR THAT.
SO YES, I THINK THERE ARE
DEFINITELY AVENUES.
ONE OF THEM IS KIND OF FROM OUR
SUPPORT AND IDEAS AND
ENCOURAGEMENT OF INNOVATIONS IN
THIS SPACE, PARTICULARLY KIND OF
INTEGRATING ACROSS THE CONTINUUM
OF MEDICAL EDUCATION ACTUALLY,
SO SUPPORTING FACULTY
DEVELOPMENT AND RETRAINING AND
RETOOLING OUR FACULTY TO BE ABLE
TO EFFECTIVELY TEACH AND ADDRESS
THIS AMONGST A BROAD, DIVERSE
GROUP OF LEARNERS, BUT ALSO, YOU
KNOW, WE HAVE FOUND THAT GRANTS,
SMALL GRANTS EVEN TO SUPPORT
CURRICULAR DEVELOPMENT HAVE BEEN
EFFECTIVE IN OTHER SPACES.
WE'VE DONE A LOT OF WORK AROUND
JUST RECENTLY -- AND ACTUALLY
IT'S ONGOING, BUT TO IMPROVE HOW
WE TEACH AND LEARN ABOUT
ADDICTION, FOR EXAMPLE, STARTED
SEVERAL YEARS AGO, OF COURSE,
WITH THE OPIOID EPIDEMIC AND
CONTINUED TO SEE GREAT
IMPROVEMENTS IN THAT SPACE.
BUT IT WAS KIND OF A MULTITIERED
APPROACH.
IT WAS HOLDING UP AND
SPOTLIGHTING OUR PROGRAMS AND
CURRICULA WHERE THERE WERE
REALLY EXEMPLARY MODELS, SO
DOING KIND OF SOMETHING SIMILAR
IN THIS SPACE, I COULD SEE.
AND THEN PROVIDING SMALL FEE --
INNOVATIVE GRANTS TO DEVELOP
MORE EFFECTIVE AND ROBUST
TRAINING PROGRAMS THAT IS
IMPORTANTLY INTEGRATED, THREADED
AND CONNECTED TO ORGAN SYSTEMS
OR DEPENDING ON HOW THE
CURRICULUM IS STRUCTURED, TO
CLINICAL APPLICATIONS.
SO A LOT OF -- AND WE HAVE FOUND
THAT KIND OF SPOTLIGHTING WHAT
IS THOSE PROGRAMS THAT ARE DOING
GREAT, GOOD WORK IN THIS SPACE
AND THEN SUPPORTING AND
PROVIDING -- SUPPORT, I SHOULD
SAY, FINANCIALLY EVEN SMALL
GRANTS CAN GO A LONG WAY IN
MEDICAL EDUCATION AND OTHER
HEALTH PROFESSIONS EDUCATION.
SO JUST A COUPLE EXAMPLES.
FOR
YOU.
>> WONDERFUL.
NEXT WE HAVE SARAH, YOU HAD
SOMETHING TO CONTRIBUTE?
>> YEP, I WAS JUST GOING TO SAY
FROM THE PERSPECTIVE OF THE
AMERICAN SOCIETY OF BREAST
SURGEONS WHERE WE REALLY SIT ON
THIS CONTINUUM IS THAT
PREVENTION PERSPECTIVE, THAT
WE'RE SEEING THE PATIENTS WHO
ARE DIAGNOSED WITH BREAST CANCER
BEFORE THEY'VE HAD ANY TYPE OF
SURGICAL TREATMENT, AND THEN
WE'RE SEEING THEM IN FOLLOW-UP.
SO WE HAVE KIND OF A WIDE
AUDIENCE THERE.
WE ALSO LIKE I SAID IN
CONJUNCTION WITH THE SOCIETY OF
SURGICAL ONCOLOGY, OVERSEE AND
CERTIFY ALL OF THE BREAST
SURGICAL FELLOWSHIPS THAT HAPPEN
ACROSS THE COUNTRY AND HAVE
INPUT INTO THE COMPLEX GENERAL
SURGICAL ONCOLOGY FELLOWSHIPS AS
WELL, AND THAT'S REALLY SPECIFIC
WITH RESPECT TO CURRICULUM
DEVELOPMENT AS WELL AS
DETERMINING CASE MINIMUMS AND
THINGS LIKE THAT, SO IF WE
WANTED TO SET AN ESTABLISHED
CURRICULUM OR CRITERIA NECESSARY
FOR GRADUATION, WE CERTAINLY
WOULD HAVE INFLUENCE IN THAT
SPACE.
AND THEN I WOULD SAY WE HAVE AN
ANNUAL MEETING EVERY YEAR, WE
HAVE HANDS-ON SESSIONS, COULD
ALWAYS HAVE A PRE-MEETING COURSE
OR SOMETHING LIKE THAT
SURROUNDING THIS AREA.
WE'VE HAD ONE IN THE LAST
SEVERAL YEARS RELATED TO, LIKE I
SAID, MANAGEMENT OF THE AXILLA,
AXILLARY SURGERY, EVEN WITH
CADAVER DISSECTIONS AND THINGS
LIKE THAT THAT MAY PROMOTE SOME
OF THESE SKILLS, BUT OUR ROLE IS
REALLY IN THAT PREVENTION AND
EDUCATION STANDPOINT, THE
SCIENCE IS VERY IMPORTANT, BUT
IT'S EDUCATING OUR MEMBERS ABOUT
THE IMPORTANCE AND THE VALUE OF
SCREENING THESE PATIENTS
PROSPECTIVELY AS WELL AS THEN
EDUCATING THE PATIENTS ABOUT
SIGNS AND SYMPTOMS TO LOOK FOR
AND DEVELOPING SCREENING
STRATEGIES THAT CAN THEN BE
IMPLEMENTED BROADLY.
>> THAT'S WONDERFUL.
THANK YOU.
CHRIS, I THINK YOU'RE NEXT.
>> THANK YOU.
SO I HAD A COUPLE OF THOUGHTS
SPEAKING FROM A PHYSICAL THERAPY
STANDPOINT.
ONE OF THE FIRST THINGS THAT
REALLY DRAWS MY MIND IS REALLY
LEANING ON ACCREDITATION
STANDARDS, AND I THINK YOU'D
SPOKE ABOUT IT, STANLEY, EARLIER
IN THE MORNING AS KIND OF
SAYING, YOU KNOW, PROGRAMS WILL
CHANGE THEIR CURRICULUM WHEN THE
LICENSURE EXAM HAS QUESTIONS
ABOUT A SPECIFIC TOPIC.
AND CERTAINLY I'VE DONE PHYSICAL
THERAPY EDUCATION FOR ALMOST 21
YEARS, AND CERTAINLY WHEN
EDUCATION ACCREDITATION
CURRICULUM SAY THIS NEEDS TO BE
A REQUIRED COMPONENT WITHIN
THE -- IN ENTRY LEVEL CURRICULUM
AND HERE IS THE DEPTH AND
BREADTH AND EXTENT, I THINK
THAT'S WHERE THE EDUCATORS LEND
A LOT OF WEIGHT TO THAT AS WELL.
SO I THINK THAT'S WHERE
CERTAINLY WITHIN THE AMERICAN
PHYSICAL THERAPY ASSOCIATION,
ACCREDITING BODIES, WE CERTAINLY
HAVE A VOICE WITH OURS, AND I
THINK THAT COULD BE SOMETHING
THAT ALL OF THE ORGANIZATIONS,
MAYBE EERCH FACILITATING A PANEL
LIKE THIS WITH SOME OF THE
ASSOCIATION ACCREDITING AGENCIES
TO REALLY KIND OF SAY HERE'S OUR
VOICE, HERE'S OUR PROBLEMS, THIS
IS A SOCIETAL PROBLEM, THIS IS
HOW MUCH MONEY IT'S COSTING.
I ALSO SERVE ON THE COMMISSION
ON CANCER FOR THE AMERICAN
COLLEGE OF SURGEONS, AND WE WERE
TALKING A LITTLE BIT ABOUT
ACCREDITATION OF HEALTHCARE
PROGRAMS, AND THERE'S A NEW
STANDARD, RELATIVELY NEW
STANDARD 4.6 FOR CANCER
REHABILITATION, BUT THERE HAS TO
BE SOME LEVEL OF CANCER
REHABILITATION, AND SOME OF THE
FRUSTRATIONS FROM THE SITE
VISITORS WAS THEY WOULD SAY,
WHICH WAS NOT WRONG BUT IS A
GOOD PLACE TO START IS, DO YOU
HAVE A CANCER -- PROGRAM AND
THEY WOULD SAY, YES, WE HAVE A
LYMPHADEMA THERAPIST.
THAT'S GREAT, THAT IS A
WONDERFUL PLACE TO START, BUT
THAT SEEMS TO BE KIND OF THE
DEFAULT THAT SOME PROGRAMS THINK
I'VE GOT ONE LYMPHADEMA
THERAPIST, THAT'S MY WHOLE
CANCER REHAB PROGRAM, SO MAYBE
JUST KIND OF PUTTING THAT OUT
THERE AS KIND OF A WAY FOR US TO
CONSIDER LEVERAGING SOME OF THAT
DEFAULT KNOWLEDGE TO SAY, HEY,
THEY HAVE THE STANDARD 4.6, YES,
LYMPHADEMA IS A HUGE IMPORTANT
PART OF THAT, HOW DO WE CHANGE
PRACTICE AND AGAIN HOW DO WE
DRIVE MORE CLINICIANS TO WANT TO
PURSUE THE KNOWLEDGE AND
EDUCATION.
I THINK THAT'S THE OTHER BIG
PART OF IT, GETTING FOLKS TO
SAY, YES, THIS IS REALLY, REALLY
IMPORTANT, AND THEN ALL THESE
GREAT SPOTS FOR EDUCATION WILL
BE PLACES THAT THEY CAN GET THAT
INFORMATION FROM.
>> THANK YOU, THOSE ARE GREAT
POINTS.
THERE'S BETSY, I THINK YOU'RE UP
NEXT.
>> THANK YOU.
CHRIS, THANKS FOR THAT.
BECAUSE I THINK ACCREDITING
BODIES ARE VALUABLE, AND WHEN I
THINK SORT OF ENTRY LEVEL
EDUCATION, THAT'S A REALLY
OBVIOUS PLACE TO START BECAUSE
IN ORDER TO MAINTAIN OUR
ACCREDITATION AND PT EDUCATION,
OUR STUDENTS ARE TESTED ON THE
LYMPHATICS AS PART OF LICENSURE,
HOWEVER, LYMPHADEMA MANAGEMENT
IS NOT CONSIDERED AN ENTRY LEVEL
SKILL PER SE.
SO THEY'RE AWARE POTENTIALLY
ABLE TO REFER, SO THAT I THINK
IS ONE BARRIER AT LEAST ON THE
REHAB SIDE.
IF I PUT MY LANA HAT BACK ON,
SOME OF THE CHALLENGES THAT WE
FACE ARE, OUR CERTIFICATION EXAM
IS AN ACCREDITED EXARM AND WE EE
HAVE ELIGIBILITY REQUIREMENTS
THAT OUR CANDIDATES MUCH MEES SO
THAT REQUIRES THEM TO TA TAKE
ADDITIONAL CONTINUING EDUCATION
CREDITS FROM OUTSIDE SOURCES.
THERE ARE SORT OF MINIMUM
STANDARDS THAT THEY HAVE TO
MEET, BUT WE'RE NOT IN A
POSITION WHERE WE'RE ACCREDITING
THOSE DIFFERENT BODY, AND I
THINK THE CHALLENGES WE FACE ARE
LACK OF STANDARDIZATION OF HOW
THAT'S BEING TAUGHT, LACK OF
STAND DAITION OF HOW WE'RE
STANDARDIZATION IN HOW WE'RE
ACTUALLY DECIDING WHO OR WHO
DOES NOT HAVE LYMPHADEMA AND HOW
WE'RE GOING TO TREAT THAT.
SO I THINK IT GOES BEYOND THE
EDUCATION PIECE BECAUSE WE CAN
CONTINUE TO EDUCATE BUT WE
CONTINUE TO HAVE ALL THESE OTHER
ISSUES WITHIN THE REALM OF
LYMPHADEMA MANAGEMENT TO
ACTUALLY SPEAK THE SAME
LANGUAGE.
SO WE HAVE CHALLENGES BOTH BEE
BETWEEN AND AMONG THE GROUPS.
SO THERE IS THE CHALLENGE FROM
AN INTERDISCIPLINARY PERSPECTIVE
BUT WE ALSO HAVE THE CHALLENGES
OF MAYBE I'M USING BIOIMPEDANCE
IN MY CLINICAL ENVIRONMENT BUT I
CAN'T SPEAK TO DR. DAVIES IN HER
ENVIRONMENT BECAUSE THEY'RE
USING SOMETHING ELSE.
SO I THINK FROM A BASELINE
STANDPOINT, WE'VE NOT MADE
STRONG DECISIONS ABOUT HOW TO
BEST ASSESS, DIAGNOSE AND MANAGE
THIS PATIENT POPULATION TO THEN
LET THAT REACH OUT INTO THE
OTHER HEALTHCARE PROVIDERS SO
THAT WE CAN PROVIDE A REALLY
SEAMLESS CONTINUUM OF CARE.
>> LENT POINTS.
>> EXCELLENT POINTS.
DO YOU HAVE SPECIFIC QUESTIONS
FOR THIS GROUP OR PERHAPS
INDIVIDUALS YOU'VE HEARD SPEAK
ALREADY?
MAX, PLEASE.
>> I'M PART OF THE COMMISSION
BUT ALSO INTERNATIONAL -- INTERL
RADIOLOGIST.
I HAVE A QUESTION TO LISA
HOWLEY.
SO OUR GOAL, AND WE TALKED ABOUT
THIS THIS MORNING, TO INTRODUCE
THE -- AT THE STUDENT LEVEL.
AND IT'S VERY DIFFERENT IN
DIFFERENT INSTITUTIONS, OF
COURSE.
AND ONE OF THE -- SAID ONE OF
THE MOST -- THE STRONGEST DRIVER
FOR AN INSTITUTION IS TO
INTRODUCE THE QUESTION OR
TESTINGS OF THE EXAMS SUCH AS --
AND THE MORE THE INSTITUTIONS
SEE THERE IS A QUESTION,
SPECIFIC QUESTION ABOUT CERTAIN
DISEASE, THEY WILL TRY TO
COMPENSATE FOR THAT OR -- WITH
EDUCATION.
SO WHAT ARE YOUR THOUGHTS ABOUT
THAT?
HOW CAN WE GET INTO -- CAN WE
HAVE A MEETING WITH THEM,
DISCUSS WITH THEM, AND WHAT IS
EVEN THE PROCESS FOR THE
CREATING OF -- OR USE OF
QUESTIONNAIRES?
>> LISA, IF YOU CAN ANSWER?
>> YES, YES, THANK YOU.
I ASSUME YOU'RE REFERRING TO
THIS LISA, RIGHT?
>> LISA HOWLEY.
>> I WANTED TO MAKE SURE, I
HEARD SOMEBODY ELSE SPEAK UP.
NO, THAT'S A GREAT QUESTION.
AND WE KNOW -- AS MUCH AS WE
WOULD LIKE TO SAY THAT TESTING
DOES NOT DRIVE LEARNING, TESTING
DRIVES LEARNING, WE KNOW THAT.
IT'S -- IT SHOULDN'T BE THE ONLY
DRIVER, OUR OWN FACTOR, AND IT'S
NOT, OF COURSE, BUT IT IS ONE
AND IT'S A PRETTY STRONG ONE.
THE AAMC IS NOT RESPONSIBLE, WE
HAVE NO RELATIONSHIP WITH THE
U.S. MLE.
I'M GOING TO PUT A LINK IN THE
CHAT THAT WILL TAKE TO YOU THE
CONTENT OUTLINE OF THE U.S. MLE,
ALL OF THE THREE STEPS.
EACH STEP HAS A MORE SPECIFIC
DETAILED BLUEPRINT OR OUTLINE AS
WELL, SO YOU CAN SEE WHERE THIS
CONTENT IS COMING UP, AND YOU
WILL SEE IT ACTUALLY IN THIS
OUTLINE THAT I JUST SHARED WITH
YOU IN A NUMBER OF PLACES
ACTUALLY.
AND AS YOU WOULD -- WELL, I HOPE
YOU WOULD EXPECT BECAUSE IT IS
INTEGRATED THROUGHOUT THOSE
EXAMS.
AS FAR AS REACHING OUT,
CONNECTING AND COMMUNICATING
WITH THE U.S. MLE, THEY'RE
ACTUALLY A PARTNER ORGANIZATION
OF THE MVME AND THE FSMV, SO I
WOULD, AND MANY DO AND HAVE,
CONNECT, REACH OUT TO THE U.S.
MLE ABOUT TEST IM CONTENT AND
MANY OF YOU MAY BE ITEM WRITERS
ACTUALLY FOR THE DIFFERENT
EXAMS.
THEY ALSO HAVE, OF COURSE, NOT
JUST THE STEPP EXAMS, THEY ALSO
HAVE IN-TRAINING EXAMS AS WELL,
SO THERE'S ANOTHER OPPORTUNITY
TO REVIEW CONTENT AND THEN ALSO
IDENTIFY IF THERE ARE ANY GAPS.
SO A NUMBER OF ORGANIZATIONS OR
JUST INTERESTED EDUCATORS HAVE
DONE JUST THAT, AND SO I WOULD
ENCOURAGE YOU TO CONNECT
DIRECTLY WITH THE U.S. MLE AND I
CAN SHARE WITH YOU OFFLINE IF
YOU DON'T KNOW HOW TO DO THAT,
I'M HAPPY TO TALK TO YOU ABOUT
THAT, BUT AGAIN, THEY ARE NOT
US, THEY ARE SIBLING
ORGANIZATIONS, WE DO WORK WITH
THEM FROM TIME TO TIME ON
DIFFERENT THINGS AND DIFFERENT
PROJECTS.
>> I WAS GOING TO SAY, ON BEHALF
OF THE COMMISSION, I WILL
ENTHUSIASTICALLY ACCEPT THAT
OFFER OFFLINE TO HELP GUIDE US
BECAUSE WE ARE VERY INTERESTED
IN THIS PATH, AS MAX IS
INDICATING.
>> AND I JUST ACTUALLY DID A
DOCUMENT SEARCH ON LYMPH, AND
THERE'S ONLY ONE LYMPHATIC
DISORDER, IN THE SECTION OF
POORLY DEFINED DISEASES, IS
LYMPHADEMA.
THAT'S IT.
THERE WAS -- THERE'S ONLY ONE,
POORLY DEFINED DISORDERS.
>> I CAN ATTEST TO THE FACT THAT
AS A BOARD CERTIFIED
CARDIOLOGIST, YEARS AGO, ONE OF
OUR CLINICAL TRAINEES VERY
EXCITEDLY TOLD ME THERE WAS A
QUESTION ON LYMPHADEMA ON THE
CARDIOVASCULAR CERTIFYING EXAM.
THIS IS AFTER TEACHING IT FOR
TWO DECADES.
SO WE HAVE AN UPHILL BATTLE TO
MAKE SURE THAT THE CONTENT IS
CONS CONSONANT WITH THE DEPTH OE
PEERL WE ALL APPRECIATE
POTENTIALLY IS THERE.
NEXT I HAVE CARLOS, PLEASE.
>> YES, I WANTED TO JUST POINT
OUT THE FACT THAT AS A
PRACTICING FAMILY PHYSICIAN, ANY
EDUCATIONAL MATERIALS THAT ARE
DEVELOPED NEED TO REALLY HELP US
AS PRIMARY CARE DOCS WHO SEE
THESE PATIENTS ON A FIRST-TERM
BASIS AND THEN DO THE REFERRAL
TO THE APPROPRIATE SPECIALIST
AND ENTITIES.
GIVE US SOME PRACTICAL
INFORMATION OF WHAT WE CAN DO IN
THE PRIMARY CARE OFFICE.
WHEN WE SEE THE PATIENT.
GIVE US SOME PRACTICAL
INFORMATION ON HOW TO MANAGE IT.
UNTIL THE PATIENT CAN BE SEEN BY
THE SPECIALIST.
AND THAT WILL IMPROVE THE CARE
AND MANAGEMENT FOR OUR PATIENTS,
FROM THE ASPECT OF THE PRIMARY
CARE DOC.
AND WE REALLY NEED PRACTICAL
INFORMATION.
WE NEED INFORMATION THAT WILL
HELP US TO IMPROVE CARE.
THANK YOU.
>> THANK YOU.
THANK YOU, CARLOS.
CHRIS, I THINK YOU'RE NEXT.
>> THANK YOU.
GOOD POINT SO FAR.
SO THE ONE THING I WAS BRINGING
BACK TO ENTRY LEVEL EDUCATION
AND KIND OF HOW TO INFLUENCE
THOSE ACCREDITORS AND THOSE WHO
WROTE THE -- I'VE ACTUALLY WRIT
EP FOR OUR BOARD CERTIFICATION
SPECIALTY AND WE REALLY ARE HELD
VERY, VERY TIGHTLY TO THOSE
CONTENT OUTLINES.
SO I'M GLAD WE'RE KIND OF
TALKING ABOUT THE CONTENT
OUTLINE BECAUSE EVEN IF I WANTED
TO SNEAK A LYMPHADEMA QUESTION
ON THERE IF IT'S NOT ON THE
CONTENT OUTLINE, IT'S GOING TO
BE THROWN OUT UNFORTUNATELY.
SO ONE OF THE THINGS THAT OUR
ACADEMY HAS DONE, AND I THINK I
ALLUDED TO IN OUR INTRODUCTION,
WAS KIND OF REALLY -- WE DID A
DELPHI STUDY TO REALLY TRY AND
ESTABLISH WHAT REALLY IS ENTRY
LEVEL FOR PHYSICAL THERAPISTS,
AND IT REALLY ENDS UP BEING WHAT
SHOULD THEY BE KNOWING BY THE
TIME THEY GRADUATE FROM PHYSICAL
THERAPY SCHOOL AS A GENERALIST?
NOT NECESSARILY A SPECIALIST.
I'LL PUT IT IN THE CHAT HERE FOR
YOU GUYS TO TAKE A LOOK AT IT,
BUT AGAIN, THAT'S ONE OF THE
WAYS THAT REALLY OUR NEXT
INTENTION IS TO REALLY TAKE THAT
TO OUR ACCREDITING AGENCIES.
SO THE ONES THAT ARE ACCREDITED
PHYSICAL THERAPY ENTRY LEVEL
PROGRAMS, THOSE WHO ARE WRITING
THE CONTENT OUTLINE FOR THE
LICENSURE EXAM.
AND EVEN FOR THE SPECIALTY
EXAMINATION CONTENT DEVELOPERS,
SO THEY KNOW IDEALLY WHAT
STUDENTS SHOULD BE COMING OUT
WITH WHEN THEY GRADUATE FROM A
DOCTOR OF PHYSICAL THERAPY
PROGRAM, AND THEN THEY CAN KIND
OF BUILD ON IT FROM THERE.
I THINK THE CHALLENGE IS THAT,
OF COURSE, EVERY MEDICAL SCHOOL
AND PHYSICAL THERAPY SCHOOL AND
ENTRY LEVEL EDUCATION PROGRAM
SAYS, MY CONTENT IS SO FULL, HOW
CAN I CRAM SOMETHING ELSE IN,
AND CERTAINLY WE'RE EVEN DEALING
WITH THAT IN OUR INSTITUTION,
AND OUR GOAL IS TO KIND OF
REALLY CUT DOWN ON ENTRY LEVEL
CREDIT HOURS OR CUT DOWN ON
CONTENT BECAUSE THE STUDENT LOAN
DEBT FOR HEALTHCARE PROFESSIONS,
ESPECIALLY PHYSICAL THERAPISTS,
IS UNSUSTAINABLE RIGHT NOW.
SO WE'RE ASKING FOR MORE, BUT
WE'RE KIND OF FIGHTING AN UPHILL
BATTLE, SO WE'RE KIND OF
SWIMMING UPSTREAM JUST A LITTLE
BIT.
THANKS.
>> THANK YOU.
HILLARY, PLEASE.
>> I TOTALLY AGREE THAT IN ORDER
FOR TO BE COVERED OR EMPHASIZED
HAVING IN THE CONTENT SPECS AND
REQUIREMENTS IS CRITICAL.
MY CONCERN IS THE STEP BEFORE
THAT, AND THAT IS IDENTIFYING
THE GAP, RIGHT?
SO WE GET INTO PART OF THE
PROBLEM, PARTICULARLY IN
PEDIATRICS WHERE THIS IS LOW
VOLUME, I MEAN, YOU'VE GOT YOUR
CONGENITAL LYMPHATIC PROBLEMS,
POST SURGICAL, THOSE THINGS
OCCUR BUT THE FREQUENCY OF A
PRACTITIONER SEEING THOSE OR
EVEN A TRAINEE SEEING THOSE IS
FAIRLY LOW.
SO PART OF THE PROBLEM IS THEY
DON'T KNOW WHAT THEY DON'T KNOW,
RIGHT?
AND SO WE CANNOT ADVOCATE FOR IT
BEING INCLUDED IN THE CONTENT
SPECS UNTIL WE HAVE THE
PRACTITIONERS ACTUALLY REALIZE
THAT THEY HAVE A KNOWLEDGE GAP.
SO I THINK THAT PART OF THIS IS
GOING TO BE EDUCATION,
DISSEMINATION, ADVOCACY TOWARDS
PEOPLE UNDERSTANDING THE
PREVALENCE AND IMPORTANCE OF
THESE.
I KNOW THIS IS WHAT YOU'RE ALL
ABOUT, RIGHT, BUT I CAN'T REDUCE
THE EMPHASIS THAT THE STANDARD
PRACTITIONER OUT THERE MAY NOT
SEE A HIGH VOLUME, NEEDS TO HAVE
A BETTER UNDERSTANDING OF WHY
THIS IS CRITICAL FOR THEIR
KNOWLEDGE AND FOR THEIR
PRACTICE.
>> CAN I ASK TO CLARIFY, ARE YOU
ARE YOU SAYING THAT WE NEED
BETTER EPIDEMIOLOGY TO BE ABLE
TO COME UP WITH THAT FACTUAL
INFORMATION TO THEN INVEST THE
PROCESS DOWNSTREAM FROM THAT?
>> I DEFINITELY THINK THAT WOULD
HELP.
DATA, PEOPLE THAT ARE
DATA-DRIVEN, PEOPLE ARE GOING TO
SPEND A LOT MORE TIME ON
HYPERTENSION GUIDELINES THAN
THEY NECESSARILY WILL ON
SOMETHING THAT'S LESS FREQUENT,
UNLESS THEY UNDERSTAND THAT THIS
IS SOMETHING THAT'S GOING TO
COME UP IN THEIR PRACTICE.
AND WHY IT IS IMPORTANT.
>> CAN I ASK A SUBSIDIARY
QUESTION?
BECAUSE I THINK THIS PROBABLY
DOES COME UP A LOT MORE IN MANY
WAYS IN PEDIATRICS THAN IN ADULT
MEDICINE IS, WITHOUT REGARD TO
WHAT THE DISEASE ENTITY IS, IS
THERE A KIND OF A CURRICULAR
APPROACH FOR THE GENERALLY
PRACTICING PEDIATRICIAN TO KNOW
WHAT TO DO WITH RARE DISORDERS
AND HOW TO TRIAGE THEM INTO THE
SPECIALTY PRACTICE WITHIN
PEDIATRICS BECAUSE I THINK
THAT'S THE MORE GENERAL PATTERN
THAT WE'RE TALKING ABOUT THAT
WOULD APPLY TO LYMPHATIC
PROBLEMS.
>> THERE IS NOT FOR SPECIFIC
DISEASE BUT THERE IS A GENERAL
APPROACH.
THAT PARTICULARLY IS VERY
PREVALENT WHEN IT COMES UP FOR
THE METABOLIC OR GENETIC
DISEASES THAT -- THERE ARE SO
MANY DIFFERENT ONES BUT YOU
NEED -- YOU FIRST NEED TO
IDENTIFY THAT THERE IS A PROBLEM
OR THERE IS NOT.
>> RIGHT.
I
>> I THINK THERE'S A RELATIVELY
STANDARD APPROACH WE TRY TO
TEACH IN CLINICAL REASONING, BUT
AS YOU GET FARTHER AND FARTHER
AWAY FROM YOUR TRAINING AND YOU
MAY NOT BE AS WELL ACQUAINTED
WITH SOME OF THESE MORE COMPLEX
BUT LESS COMMON DISORDERS, THAT
APPROACH MAY NOT HOLD, SO I
THINK IT'S SOMETHING THAT BEARS
EMPHASIZING, AND ON A REGULAR
BASIS.
I THINK OUR MAINTENANCE OF
CERTIFICATION PROCESS TRIES
REALLY HARD TO DO THAT.
IT'S VERY CLINICALLY FOCUSED,
PARTICULARLY IN GENERAL
PEDIATRICS.
HAVING -- DOING MAINTENANCE AND
CERTIFICATION FOR BOTH
RHEUMATOLOGY AND GENERAL
PEDIATRICS, I CAN TELL YOU THAT
WHILE CLINICAL, THEY TEND TO
HAVE MUCH MORE SCIENCE IN THEM
THAN THE GENERAL PEDIATRICS
DOES.
THEY'RE MUCH MORE CLINICALLY
FOCUSED.
BUT THAT'S WHAT YOU NEED.
SO I THINK INCORPORATION OF SOME
OF THIS INTO THE MAINTENANCE OF
CERTIFICATION PROCESS, WHEN OURS
IS LONGITUDAL AS OPPOSED TO A
HIGH STAKES EXAM AFTER PRIMARY
CERTIFICATION WOULD BE A PLACE
THAT COULD BE -- EITHER IT LIKE
THESE OTHER ACCREDITING BOARDS
WOULD BE IMPORTANT.
>> THANK YOU.
THAT'S GREAT.
I'M GOING TO INTERRUPT THE
QUESTIONS FOR JUST A MOMENT
BECAUSE WE HAVE JOEL MOSS BACK.
I WANT TO GIVE JOEL AN
OPPORTUNITY TO CONCLUDE WHAT HE
WAS SAYING AND THEN WE'LL GO ON
WITH THE DISCUSSION.
SO JOEL, DO YOU WANT TO FINISH
UP FROM WHERE WE LOST YOU?
>> I'M JOINING THIS CONVERSATION
MUCH MORE NOW.
SO I THINK I'VE GIVEN MOST OF
WHAT I INTENDED TO SAY, SO JUST
CONTINUE, PLEASE.
THANK YOU.
>> GREAT.
THANKS.
SO JEFF, YOU'RE UP NEXT.
>> ACTUALLY, DR. HAFTEL, I THINK
YOU GOT HALFWAY THROUGH MY
QUESTION WITHOUT ME ASKING IT.
SO THINKING ABOUT NOT NEW
LEARNERS BUT PRACTICING
GENERALISTS IN PARTICULAR, AND
MAYBE DR. GONZALES COULD SPEAK
TO THIS ALSO.
SO OUTSIDE OF NOT KNOWING WHAT
THEY DON'T KNOW, AND OUTSIDE OF
THIS ONGOING CREDENTIALING
PROCESS, ARE THERE SPECIFIC
STRUCTURAL BARRIERS OR SOLUTIONS
THAT YOU SEE FOR GENERALISTS WHO
ARE OUT IN PRACTICE, THEY MIGHT
BE 10, 15, 20 OR EVEN 30 YEARS
POST TRAINING FOR GAINING
EXPERTISE, OR NOT EVEN
EXPERTISE, EVEN JUST PASSING
FAMILIARITY WITH LYMPHATIC
DISEASES, WHERE DO YOU SEE THE
STRUCTURAL BARRIERS FOR THAT
POPULATION IN PARTICULAR?
>> FROM MY PERSPECTIVE, I THINK
TIME IS THE BIGGEST BARRIER.
FOR EDUCATION IN GENERAL, BUT ON
THESE LESS COMMON ONES IN
PARTICULAR, I THINK THE FIRST
STEP IS FOR THEM TO IDENTIFY THE
NEED TO BE EDUCATED IN THIS
AREA.
AND SO NE THAT'S WHERE THE
EPIDEMIOLOGY DATA, CASE
PRESENTATIONS, ANYTHING THAT
WOULD -- THEY'RE ALL ADULT
LEARNERS, SO THEY NEED TO THINK
IT'S RELEVANCE, AND THEY NEED TO
THINK IT WILL BE APPLYING TO
THEIR PRACTICE, AND SO THAT'S
THE FIRST STEP.
AFTER THAT, YOU HAVE TO
CONSTRUCT EDUCATIONAL PROGRAMS
THAT WILL BE ABLE TO BE ALIGNED
WITH SOMEBODY IN A BUSY
PRACTICE, THINGS THAT ARE
RELATIVELY SHORT, MAY BE
ASYNCHRONOUS, SO AS OPPOSED --
YOU KNOW, NO ONE IS GOING TO GO
TO AN IN-PERSON FIVE-DAY
CONFERENCE ON A RARE DISEASE,
THEY JUST DON'T HAVE THE
BANDWIDTH.
PARTICULARLY WHEN YOU'RE OUT
THERE IN PRIVATE PRACTICE, YOU
DON'T MAKE ANY MONEY WHEN YOU DO
CME BECAUSE YOU'RE NOT SEEING
PATIENTS.
SO IT HAS TO BE ABLE TO FIT IN
TO THEIR -- SORT OF THEIR -- THE
LIFE OF THEIR WORK.
BUT THE FIRST STEP IS FOR THEM
TO RECOGNIZE THE IMPORTANCE OF
GAINING THE KNOWLEDGE IN THE
FIRST PLACE.
>> I WOULD AGREE WITH DR. HAFTEL
IN THAT, YOU KNOW, IT NEEDS TO
BE RELEVANT.
FOR EXAMPLE, MY DAUGHTER SEES
LYMPHADEMA RATHER FREQUENTLY AND
AS A RESULT, SHE'S KEEPING UP
WITH THE LITERATURE AND SHE'S
KEEPING UP WITH THE MANAGEMENT
OF LYMPHADEMA.
MYSELF, I SEE IT RARELY, AND
THERE'S SO MANY OTHER DISEASES I
HAVE TO KEEP ON TOP OF IN MY
PARTICULAR PATIENT POPULATION,
DIABETES, HYPERTENSION,
CARDIOVASCULAR DISEASE IS AT THE
TOP OF MY LIST OF WHAT I NEED TO
WORRY ABOUT.
BECAUSE I WORK WITH THE NATIVE
AMERICAN POPULATION.
IT NEEDS TO BE COST-EFFECTIVE
AND IT ALSO NEEDS TO BE
SOMETHING THAT HAS VALUE.
ON THE OTHER HAND, INFORMATION
FROM THIS SESSION WITH THE
CERTIFICATION COMMITTEE OF THE
AMERICAN BOARD OF FAMILY
MEDICINE, MAYBE WE CAN ADD A
QUESTION OR TWO INTO OUR
CONTINUING MEDICAL EDUCATION
CERTIFICATION PROCESS, JUST TO
MAKE SURE THAT PEOPLE STAY ON
TOP OF IT, BUT IT REALLY HAS TO
BE TIMELY AND COST-EFFECTIVE,
CME DOLLARS THAT ARE PROVIDED TO
PHYSICIANS ARE VALUABLE, SO THEY
TEND TO GO WHERE THE MONEY IS
AT, AS I ALWAYS TEACH MY MEDICAL
STUDENTS, YOU KNOW, AND COMMON
PROBLEMS -- HOWEVER, I DO SEE
THEY'RE REACHING OUT AND
RECEIVING THE NECESSARY
EDUCATION.
>> THANK YOU.
MIIKKA, I THINK YOU WERE NEXT.
>> THANK YOU.
A COUPLE SMALL COMMENTS.
SOMETHING THAT WE HAVE DONE IN A
SENSE TO REACH OUT FROM THE
HOSPITAL TO THE PEDIATRIC AND
GENERALIST COMMUNITIES IS THAT
AT LEAST HERE IN BELGIUM, THEY
TEND TO HAVE FROM TIME TO TIME
KIND OF AN EVENING SECTION FOR R
THEM AND THEY LIKE TO HAVE
DIFFERENT TOPIC.
SO WE'VE GONE THERE TO TALK
ABOUT THE PLETHORA IN ONE OF
THEIR SESSIONS AND THAT WAY
THOSE WHO ARE INTERESTED GET TO
KNOW THERE IS A CENTER NEXT TO
ME, NOT REALLY NEXT, BUT STILL,
WHERE I CAN REFER THOSE KIND OF
PATIENTS.
AND KIND OF WHAT KIND OF
SYMPTOMS THEY HAVE AND WHEN
SHOULD I BE ALERTED TO SEND THEM
THERE.
SO THAT'S ONE WAY I THINK FOR
EXPERTS AND ALSO TO COVER BETTER
THE SURROUNDINGS BECAUSE THAT'S
OFTEN THE PROBLEM ALSO THAT THEY
DON'T KNOW THAT THERE'S AN
EXPERT CENTER BECAUSE THESE ARE
RARE DISEASES AND THEY DON'T
KNOW LIKE IT HAS BEEN DISCUSSED
WHAT THE SYMPTOMS AND SIGNS ARE,
WHEN SHOULD I PRESID BE THINKINO
THAT WAS ONE TO SAY IT HAS TO BE
IN THEIR WORLD, SO WE'D RATHER
GO TO THEIR MEETING RATHER THAN
TRYING THEM TO GET TO SOMETHING
THAT WE WOULD ORGANIZE.
THEN ONE -- I WAS GOING THROUGH
THE -- I FOUND AVMs -- THORAX
BUT LIKE -- BIG GROUP ALREADY,
IT'S NOT MENTIONED THERE.
AND THEN AT THE END, THERE WERE
SOME TYPICAL TYPES OF GENETIC
DISEASES, WHICH IS EXACTLY THE
ONES THAT EVERYBODY TALKS, BUT I
DON'T SEE SIGNALING, AND
VASCULAR AND LYMPHADEMA MALL FOR
NATIONS ARE DUE TO ABNORMAL --
NOT AS A GROUP THERE.
METABOLIC DISEASE, THERE ARE
GENETIC BIGGER STRUCTURAL
CHANGES, THERE'S INTRACELLULAR
TRANSPORTERS AND ALL KINDS OF
OTHER GROUPS, BUT THE WHOLE
SIGNALING GROUP IS NOT INTEREST.
THERE.
SO THAT'S ONE WAY TO TRY TO PUT
SOMETHING IN.
AND THEN JUST IF I UNDERSTOOD
CORRECTLY FROM CHRIS WILSON THAT
YOU HAD A GUIDELINES PROJECT?
AND I WAS JUST INTERESTED TO
HEAR A LITTLE BIT MORE ABOUT
THAT.
>> SURE.
YEAH, SO BASICALLY SEVERAL OF US
PHYSICAL THERAPIST LEADERS KIND
OF DID A MODIFIED DELPHI STUDY,
AND IT WAS BASED OFF A COUPLE
OTHER DELPHI STUDIES.
IT SHOULD BE PUBLISHED IN THE
PHYSICAL THERAPY JOURNAL IN THE
NEXT COUPLE OF WEEKS, IT JUST
GOT ACCEPTED FOR PUBLICATION.
BUT BASICALLY WE DID THREE
ROUNDS OF THE DELPHI AND ASKED
EXPERTS IN THE FIELD, BOARD
CERTIFIED THERAPISTS, LYMPHADEMA
THERAPISTS, GENERALISTS, EVEN
SOME STUDENTS, WHAT SHOULD ENTRY
LEVEL THERAPISTS KNOW ABOUT
CANCER AND LYMPHADEMA.
AND BASICALLY WE DID THREE
ROUNDS OF DELPHI FROM THAT AND
WHATEVER FLOATED TO THE TOP OF
THAT, THAT WAS WHAT WE PUBLISHED
IN OUR GUIDELINES.
SO IT'S WORKED OUT REALLY,
REALLY WELL.
AND WE'RE HONORED TO BE
RECOGNIZED FOR PEER REVIEWED
PUBLICATION AND NOW WE HAVE KIND
OF A CORE DOCUMENT THAT WE CAN
TAKE TO INSURANCE COMPANIES,
ACCREDITING AGENCIES, AND THEN
THOSE WHO ARE WRITING THE
MEDICAL EXAM CON AT THE PRESENT
TIME OCONTENT OUTLINE SOWE CAN T
OUR CLINICIANS TELL US OUR
STUDENTS NEED TO KNOW BEFORE
THEY LEAVE AND GO OUT INTO THE
GREAT BIG WORLD.
>> MANAGEMENT GUIDELINES AND
DIFFERENT TYPES OF LYMPHATIC --
OR LYMPHADEMAS EVEN?
>> IT DIDN'T -- SO THAT WAS
ACTUALLY PROBABLY ONE OF THE
MOST INTERESTING PARTS, BECAUSE
WE ACTUALLY -- EVERY -- IT WAS
DETERMINED BY THE GROUP THAT THE
DATA SAID THAT EVERY STUDENT
NEEDS TO KNOW WHAT LYMPHADEMA
IS, HOW TO SCREEN FOR IT, HOW TO
DIAGNOSE IT, AND THEN HOW TO
REFER.
BUT IT WAS ABOUT 50/50, HALF OF
OUR CLINICIAN RESPONDENTS SAID
YES, EVERY PHYSICAL THERAPIST
NEEDS TO KNOW HOW TO DO BASIC
LYMPHADEMA MANAGEMENT, YOU KNOW,
COMPREHENSIVE DEACON JESSTIVE
THERAP DECONGESTIVE
THERAPY.
THE OTHER SAID ABSOLUTELY NOT,
THAT IS AN ADVANCED SKILL, THERE
WAS A BIG PART OF THE AUDIENCE
THAT VEMENTLY SAID NO, THAT'S
NOT ENTRY LEVEL, SORRY.
GREAT QUESTION.
THANK YOU.
>> CLAIRE.
>> I HAVE A COMMENT DUE TO THE
FIRST COMMENT ON SHARING THE
INFORMATION.
I WAS NEW TO LEXINGTON 20 YEARS
AGO, AND I HAD STARTED GETTING
INTERESTED IN LYMPHADEMA
MANAGEMENT FROM A PREVIOUS
HOSPITAL, AND THIS WAS A MUCH
BIGGER FACILITY WITHIN A
HOSPITAL SYSTEM, AND TO
INITIALLY, I GOT STARTED SHARING
INFORMATION ABOUT WHAT I WAS
DOING AT A TUMOR BOARD, AND I
GOT TO MEET THE PHYSICIANS AND
SAID HEY, I'M NEW, THIS IS WHAT
I'M DOING, YOU KNOW, SEND ME
PATIENTS, I KNOW YOU MUST HAVE
SOME PATIENTS WITH LYMPHADEMA,
AND IT GOT STARTED THAT WAY.
SO NOW WHEN I AM INVOLVED IN ANY
CLINICAL PRACTICE GUIDELINE,
WRITING OR THIS CONSENSUS
DOCUMENT ONCE IT'S PUBLISHED, MY
PHYSICIANS ARE ALL ASKING ME,
BRING ME THE EVIDENCE, BRING TO
ME, YOU KNOW, SHOW ME, SO I'LL
JUST SAY -- I'LL CALL THEM AND
SAY CAN I COME AND SHARE THIS?
SO I'LL TURN UP AT A TUMOR BOARD
AND HAVE FIVE OR 10 MINUTES AT
THE BEGINNING TO SAY, OKAY, THIS
IS THE MOST IMPORTANT EVIDENCE
YOU NEED TO BE AWARE OF THIS,
THIS IS WHAT WE'VE FOUND.
SO I'M SHARING IT THAT WAY.
I'M ALSO INVOLVED IN SHARING IT
WITHIN OUR STATE PHYSICAL
THERAPY ASSOCIATION, SO WHEN WE
HAVE A NEW CLINICAL PRACTICE
GUIDELINE, I'LL ASK TO GO TO THE
FALL OR SPRING MEETING AND SHARE
THE UPDATES THERE.
JUST TO MAKE PEOPLE AWARE WITHIN
OUR COMMUNITY, WE DO HAVE
SMALLER GROUPS GETTING TOGETHER,
PHYSICAL THERAPISTS.
IT'S NOT SO MUCH THE LYMPHADEMA
THERAPISTS YET, THAT'S GOING TO
BE HAPPENING WITHIN OUR SYSTEM.
OUR HOSPITAL SYSTEM.
BUT WITHIN THE PHYSICAL
THERAPISTS WITHIN KENTUCKY, WE
DO GET TOGETHER AND SHARE
INFORMATION AND UPDATE ON
CLINICAL PRACTICE GUIDELINES AS
WE CAN.
AND THEN NATIONALLY, WE HAVE
LIKE CHRIS SAID EARLIER, WE HAVE
THE COMBINED SECTION MEETING AND
WE'D ALWAYS DO AN UPDATE ON THE
CLINICAL PRACTICE GUIDELINE AND
A TWO-HOUR EDUCATION SESSION.
SO WITHIN PHYSICAL THERAPY, WE
ARE TRYING TO GET INFORMATION
OUT ON NEW CONSENSUS DOCUMENTS
AS WELL AS CLINICAL PRACTICE
GUIDELINES.
SO IT'S GETTING THE WORD OUT.
>> THANK YOU.
PAULA, I THINK YOU HAVE YOUR
HAND UP.
>> OH, PERFECT.
I'VE BEEN TRYING TO GET MY VIDEO
UNLOCKED BY THE HOST BUT SINCE
I'M NOT -- IF YOU GUYS CAN
UNLOCK MY VIDEO, I WILL SHARE
VIDEO.
THANK YOU ALL FOR THIS WONDERFUL
DISCUSSION.
I LOVE IT.
CHRIS, CAN I ASK A QUESTION?
I KNOW IT WAS MORE FOCUSED TO
ONCOLOGY.
DID YOU GET ANY RESPONSES BACK
OR ANYBODY ELSE IN THE PHYSICAL
THERAPY SPACE HERE ON THIS CALL
WHERE IT'S THE IMPORTANCE OF THE
LYMPHATICS ITSELF, NOT
NECESSARILY DRILLING IT INTO THE
NEEDS OF BEING ABLE TO DO THE
MANAGEMENT, BUT IT'S A LITTLE
BIT LIKE PULLING IT BACK AND
JUST UNDERSTANDING IT BETTER AND
IN THEIR DIFFERENT SPACES, THEY
HAVE A GOOD EDUCATIONAL
UNDERSTANDING COMING OUT AS A PT
OF HOW THE LYMPHATICS ARE GOING
TO -- WE CAN USE THE LYMPHATICS
AS PHYSICAL THERAPISTS TO HELP
OUR PATIENTS FOR WHOLE WO HOST F
PROBLEMS, POST SURGICAL, INJURY,
NOT THAT LYMPHATICS HAS SUCH AN
IMPAIRMENT WHERE IT'S DEVELOPING
LYMPHADEMA, BUT DID ANY OF THAT
COME UP TO BETTER UNDERSTANDING
THE IMPORTANCE OF TRAINING OUR
PTs ON THE LYMPHATICS,
LYMPHATIC FUNCTIONING AND HOW WE
CAN USE IT BETTER?
>> I THINK THERE WAS AT LEAST
INHERENT TO OUR DOCUMENT WAS A
BASIC UNDERSTANDING OF LYMPHATIC
ANATOMY AND PHYSIOLOGY AND
FUNCTION, AND HOW THINGS DO
WORK, AND I KNOW THAT AT LEAST
FOR THE PROGRAMS THAT I'M
FAMILIAR WITH, THAT IS EMBEDDED
FAIRLY STRONGLY INTO ENTRY LEVEL
PROGRAMS, SO I'M PRETTY
CONFIDENT THAT THE STUDENTS ARE
KNOWING THAT PART.
I THINK AGAIN IT PROBABLY FALLS
IN LINE WITH JUST LIKE THE
CLINICAL END OF THINGS, JUST
LIKE THE CLINICIAN SAID, OH,
YEAH, I HAVE A CANCER REHAB
PROGRAM BECAUSE I HAVE
LYMPHADEMA, I THINK A LOT OF EP
TRI LEVEL PROGRAMS ALSO FEEL THE
SAME WAY, IT'S LIKE, OH, YEAH,
I -- I TEACH LYMPHADEMA SO I'M
TEACHING CANCER REHAB.
OR KIND OF TELLING THEM A LITTLE
BIT ABOUT KIND OF WHAT A
CERTIFIED LYMPHATIC THERAPIST
DOES IS ENOUGH AND WE'VE KIND OF
SAID THAT, -- YOU NEED TO DO
THAT DEPTH AND BREADTH, BUT I
GOT THE IMPRESSION THAT MOST OF
THE PROGRAMS I'M INVOLVED IN
HAVE SOME BASIC KNOWLEDGE OF
LYMPHATICS.
>> AND I THINK WE PROBABLY JUST
HAVE TO GROW FROM IT, BECAUSE
THE GENERAL INFORMATION I KEEP
GETTING FROM STUDENTS COMING
FROM DIFFERENT PROGRAMS IS, THEY
ONLY RECALL A LITTLE BIT OF
INFORMATION IN AN HOUR OR HALF A
DAY, AND IT'S NOT BEING YOU HID
IT THERE WHERE IT KIND OF LIKE,
HEY, EVERYONE, WE WANT TO CHECK
THAT BOX, FOR THEIR PROGRAM AND
IT NOT TO SAY THAT WILL THEIR
PROGRAM IS INSUFFICIENT.
IT JUST WE HAVE LEARNED OVER THE
LAST DECADE WHERE WE ARE MISSING
OPPORTUNITIES.
AND PATIENTS CAN GET BETTER
FASTER THE MORE CLINICIANS ARE
AWARE OF WHAT THEY -- I KNOW
WE'VE HAD THIS CONVERSATION --
HOW DO WE GET THE CLINICIANS TO
UNDERSTAND WHAT THEY DON'T KNOW
AND IT GOING TO OPEN UP THEIR
MINDS AT BEING BETTER WITH WHAT
THEY PROVIDE AS PHYSICIANS, AND
REFERRALS, A LOT OF THIS HAS TO
BE REFERRALS TOO.
THANK YOU.
>> BETSY.
>> JUST A COMMENT.
PAULA, I APPRECIATE YOUR
PERSPECTIVE BECAUSE REALLY WE
NEED TO LOOK AT IT AS IT EDEMA
MANAGEMENT.
IN TREATING EVEN OUR ORTHOPEDIC
PATIENTS, BUT I THINK WE'RE
GOING TO CONTINUE TO FACE
BARRIERS THERE AND I THINK THIS
GOES BACK TO -- I THINK IT WAS A
COMMENT THAT HILLARY MADE BEFORE
WAS WE HAVE TO IDENTIFY THE GAPS
FIRST AND SO WE HAVE THIS WHOLE
POPULATION OF EXISTING PROVIDERS
OUT IN THE CLINIC WHO DON'T SEE
VALUE IN THAT AND DON'T
NECESSARILY UNDERSTAND TO THAT
LEVEL OF DEPTH, SO TO HAVE OUR
STUDENTS COME IN AND SAY I THINK
THIS IS WHAT WE SHOULD DO AND I
THINK JUST BRINGS A DIFFERENT
LAYER OF COMPLEXITY TO THAT
CLINICAL ENVIRONMENT, SO I AM
NOT AT ALL BEING PESSIMISTIC
ABOUT IT, BUT I THINK IT'S THE
REALITY OF THE ENVIRONMENT THAT
WE FACE.
I KNOW MANY OF US WITHIN THE
SPACE TALK ABOUT HOW DO WE
TRANSLATE THIS TO ORTHOPEDICS OR
SOME OF THE OTHER POPULATIONS
THAT WE'RE REGULARLY SEEING
WHERE WE CAN SAFELY UTILIZE THE
INTERVENTIONS WE'RE DOING FOR
LYMPHADEMA PATIENTS BUT I THINK
THERE'S ALWAYS THIS -- YOU'RE
THE LYMPHADEMA PROVIDERS, RIGHT,
WE'RE A WHOLE DIFFERENT SUBSET
OF CLINICIANS EVEN THOUGH WE
SHOULD BE ABLE TO BE CONSIDERING
ALL OF THE IMPAIRMENTS AND
FUNCTIONAL LIMITATIONS OF OUR
PATIENT, IRREGARDLESS OF THE
ETIOLOGY AND WHO'S MOST
QUALIFIED.
SO I THINK IT'S SORT OF A BIGGER
ELEPHANT IN THE ROOM THAN EVEN
JUST WORKING WITH THE PATIENTS
WHO HAVE A CLEAR ETIOLOGY FOR
THAT.
>> CHRIS.
>> YES.
SO JUST ANOTHER THOUGHT FOR
DISCUSSION.
TAKING THIS FROM THE PAYMENT END
OF THINGS, I THINK ONE OF THE
OTHER BIG CHALLENGES WE RUN INTO
JUST LIKE ACCREDITING AGENCIES
KIND OF DICTATE A LOT OF WHAT
THE PROGRAMS WILL DO, WHAT THE
CLINICIANS WILL DO IS DICTATE IT
BY WHAT THEY'RE PAID FOR.
AND RIGHT NOW REALLY THE
RESEARCH IS SHOWING THAT THINGS
LIKE THE PROSPECTIVE
SURVEILLANCE MODEL FOR BREAST
CANCER-RELATED LYMPHADEMA IS
REALLY, REALLY HELPFUL.
LET'S CATCH IT EARLY, GIVE IT A
FEW VISITS, MAYBE WAITING FOR
SOMETHING TO FESTER, AND ONE OF
THE BARRIERS AT LEAST FROM A
THERAPY PERSPECTIVE WAS THE
INITIAL REQUIREMENT FOR A
PRESCRIPTION TO COME SEE A
PHYSICAL THERAPIST, EVEN FOR A
BASIC CONSULTATION.
AND NOW THE LEGISLATIVE THINGS
HAVE SHIFTED A LITTLE BIT TO
WHERE PEOPLE CAN GO SEE A
PHYSICAL THERAPIST WITHOUT
NEEDING A PRESCRIPTION IN ALL
JURISDICTIONS AND IT REALLY DOES
FALL TO EVERYONE IN THAT
SURVIVOR SHIP TO BE SCREENING
FOR THESE THINGS, AND AGAIN,
MAYBE DOING PURPOSEFUL
SCREENINGS THROUGH SOMETHING
LIKE THE MODEL THAT'S PUBLISHED.
AND THE PROBLEM I THINK IS THE
INSURANCE COMPANIES ARE NOT
THERE YET.
THEY'RE NOT THERE KIND OF TO
SAY, OH, YEAH, WE KNOW THIS
PERSON IS AT FAIRLY HIGH RISK OF
DEVELOPING LYMPHADEMA, WE DO
WANT THEM TO SEE SOMEONE EVERY
SIX MONTHS OR EVERY THREE MONTHS
OR HOWEVER LONG THE GUIDELINES
SAY, BUT THAT CONFUSES THE
INSURANCE COMPANIES.
I KIND OF EQUATE IT A LOT TO
WHEN I'M SPEAKING TO PUBLIC
AUDIENCES IS KIND OF LIKE THE
DENTIST MODEL.
MY DENTIST WON'T LET ME LEAVE
THE OFFICE WITHOUT SCHEDULING
ANOTHER 6 MONTH APPOINTMENT.
NOW THEY PROBABLY WILL LET ME
LEAVE BUT YOU GET THE IDEA, WHEN
WE'RE DOING THAT FOR THE TEETH
WHERE I DON'T HAVE A HUGE RISK
FOR CAVITIES, BUT WE'RE NOT
NECESSARILY FOR PEOPLE
DEVELOPING LYMPHADEMA YET FROM
AN INSURANCE COMPANY STANDPOINT.
>> CHRIS, I AGREE WITH THAT, BUT
THERE IS A FLY IN THE OINTMENT
WHICH IS THAT MOST PEOPLE SEE
DENTISTS OUTSIDE OF THE REALM OF
INSURANCE COVERAGE OR MINIMAL,
AND THE PROBLEM WITH THE
INSURANCE COMPANIES IS THAT THEY
HAVE NOT REALLY EMBRACED
PREVENTIVE STRATEGIES.
THEY DON'T WANT IT BECAUSE THEY
KNOW THAT PEOPLE CHANGE THEIR
INSURERS WITH ENOUGH REGULARITY
THAT THEY'RE GOING TO PAY FOR
SOMETHING THAT IS GOING TO
BENEFIT ANOTHER RECIPIENT AND SO
THAT'S WHERE WE GET INTO TROUBLE
WITH TRYING TO INVOKE PREVENTION
TO MINIMIZE PROBLEMS.
>> I AGREE.
I DON'T HAVE THE AWBS.
I JUST HAVE THE QUESTIONS.
>> SARAH.
>> I DON'T KNOW IF THIS FIT
HERE, BUT CHRIS BROUGHT UP THE
IDEA OF SURVEILLANCE.
WHEN I THINK ABOUT THE BREAST
CANCER POPULATION, THERE'S SO
MUCH FOCUS ON DE-ESCALATION OF
THERAPY, AND THE REALITY IS, IS
THAT MANY OF THE PATIENTS MIGHT
BE TREATED WITH NO CHEMOTHERAPY
OR MINIMAL RADIATION THERAPY OR
ORAL CHEMOTHERAPIES, AND MANY OF
THE VISITS POSTOPERATIVELY ARE
HAPPENING VIRTUALLY.
AND SO HOW DO YOU FOLLOW THESE
PATIENTS TO COME BACK WHEN
YOU'RE TRYING TO DO THAT
PROSPECTIVE SURVEILLANCE MODEL
WITH NO OTHER REASON TO COME
BACK AND THEY MIGHT BE ABLE TO
DO A VIDEO VISIT TO SATISFY
THOSE FOLLOW-UP VISIT.
SO AS WE MOVE INTO THIS REALM OF
VIRTUAL CARE AND WE ALREADY KNOW
WE HAVE SIGNIFICANT
HETEROGENEITY IN THE TECHNOLOGY
USED TO DIAGNOSE LYMPHADEMA AND
NO ONE AGREES, WHERE DO WE GO IN
THE SETTING OF TELEHEALTH AND
VIRTUAL MEDICINE, WHERE WE'RE
ALL MOVING TO, AND HOW DO WE
FOLLOW THESE PATIENTS GOING
FORWARD?
WE DON'T HAVE A GOOD STRATEGY
FOR THAT.
IT WOULD HAVE TO BE SOMETHING
THAT IS PATIENT-DIRECTED AND
PATIENT-USED BECAUSE RIGHT NOW
ALL OF OUR SURVEILLANCE TOOLS
REQUIRE AN IN-PERSON VISIT.
>> GOOD POINT.
GOOD POINT.
I'D LIKE TO -- I DON'T SEE ANY
HANDS RAISED RIGHT AT THE
MOMENT, SO I'D LIKE TORE BROADEN
THIS DISCUSSION TO A TANGENTIAL
AREA.
WE'VE TALKED A LOT DURING THE
COURSE OF THE DAY ABOUT
EMBRACING POPULATIONS OF
PRACTITIONERS THAT ARE ALREADY
FORMALLY TRAINED THAT ARE OUT IN
THEIR SETTING PURSUING THEIR
CAREERS AND ARE PRACTICING WITH
THE KNOWLEDGE ARMAMENTARIUM THAT
THEY HAVE.
SO ACKNOWLEDGING, FOR EXAMPLE,
THAT MOST OF THE LYMPHATIC
PRESENTATIONS IN PEDIATRICS WILL
BE RELATIVELY UNCOMMON,
ACKNOWLEDGING THE FACT THAT
WITHIN THIS DOMAIN, THERE ARE
UNCOMMON CONDITIONS LIKE LAM AND
VASCULAR MALFORMATIONS IN ADULTS
AND PROTEIN -- I ALSO WANT TO
ACKNOWLEDGE THAT OUR CHARGE
EMBRACES TWO VERY COMMON MEDICAL
CONDITIONS, LYMPHADEMA OR LET'S
SAY CHRONIC EDEMA, AND LIPEDEMA,
ESTIMATED AT AFFECTING BETWEEN T
POPULATION, IN POPULATIONS SUCH
AS THE UNITED STATES, SOME OF
THOSE OBSERVATIONS WERE MADE IN
GERMANY.
THE NUMBERS FOR CHRONIC EDEMA GO
UP TO ABOUT 10 MILLION AS
ESTIMATES IN THE UNITED STATES.
SO THE QUESTION I WOULD LIKE TO
PUT IN FRONT OF THE PANEL IS,
HOW DO WE BEGIN TO GET THE
MESSAGE THAT NESTED IN WHAT YOU
DON'T KNOW BUT WHAT YOU NEED TO
KNOW ARE SOME COMMON PROBLEMS
YOU MAY BE OVERLOOKING IN YOUR
PATIENT POPULATION AND/OR
PERHAPS DON'T HAVE THE RESOURCES
TO KNOW HOW TO FACILITATE THEIR
CARE WITHIN THE BROADER MEDICAL
NETWORK.
ANY COMMENTS FROM ANYBODY ON
THAT?
NO SOLUTIONS.
>> LISA.
THANK YOU.
>> IN IS NOT A PERFECT SOLUTION
BUT ONE EXAMPLE FOR THOSE TYPES
OF CONDITIONS OR CHALLENGES, THE
RARE BUT -- CONDITIONS OR --
CLINICAL FINDINGS, FOR EXAMPLE,
THAT YOU WANT TO TRAIN FOR BUT
IT'S HARD TO DO THAT IN AN
ACTIVE CLINICAL -- EVEN AN
ACTIVE CLINICAL ENVIRONMENT,
VERY BUSY ONE, IS SIMULATION.
WE DO THAT QUITE OFTEN.
SIMULATION HAS BECOME UBIQUITOUS
ACROSS HEALTH PROFESSIONS FOR
VERY COMPLEX CASES AND REASONS
AND ENVIRONMENTS TO EVEN SIMPLE
ONES.
SO I WONDER, WORKING WITH THE
SIMULATIONISTS OR THOSE
EDUCATORS WHO WORK IN
SIMULATION, USE SIMULATION,
THERE ARE NOW FORMAL
ORGANIZATIONS WHO KIND OF LEAD
AND DEVELOP AND DO RESEARCH IN
SIMULATION-BASED EDUCATION TO
KIND OF IDENTIFY HOW OUR -- IS
THIS BEING ADDRESSED THROUGH
THEIR CURRENT SIMULATION
PROGRAM, SIMULATION EDUCATION,
HOW CAN IT BE FURTHER ADDRESSED,
WHERE ARE THERE GAPS AND
OPPORTUNITIES, TO BRING IT IN TO
THOSE CLINICAL LEARNS
EXPERIENCES.
AGAIN, ACROSS PROFESSIONS.
SO IT'S JUST ONE -- ANOTHER
SPACE THAT I DON'T KNOW IF IT'S
COME UP TODAY OR NOT, BUT THE
SIMULATION SPACE MIGHT BE
ANOTHER OPPORTUNITY HERE.
AND WHILE I'M NOT MUTED IF YOU
DON'T MIND, I DID PUT IT IN THE
CHAT JUST A MOMENT AGO, THERE
WERE CONVERSATIONS ABOUT CME AND
ABOUT ASSESSMENT AND IT JUST
REMINDED ME OF LONGITUDAL
ASSESSMENTS.
SO THE VAST MAJORITY OF THE
BOARDS NOW HAVE MOVED TO
LONGITUDAL ASSESSMENT, AND
MEANING THAT THOSE CLINICIANS
ARE GETTING QUESTIONS THROUGHOUT
THE YEAR, AND RESPONDING TO
THOSE QUESTIONS, THEY'RE GETTING
CONTINUING EDUCATION CREDITS FOR
DOING THAT TYPE OF WORK IN MOST
CASES FOR DOING THE -- FOR
STAYING CURRENT, STAYING ON TOP
OF THEIR OWN LEARNING, IN ONE
WAY, THIS IS JUST ONE EXAMPLE,
BUT ENSURING THAT THE BOARDS ARE
INTEGRATING RELEVANT -- THIS
INFORMATION INTO THOSE
ASSESSMENTS MIGHT BE ANOTHER
FORWARD PATH TOO.
SO JUST A LITTLE ADDITIONAL
COMPLEX TO THE NOTE I PUT IN THE
CHAT.
>> THANK YOU, THAT'S GREAT.
I WANT TO DOVETAIL ON THE
QUESTION THAT I ASKED, MAYBE
MAKE IT MORE DIRECTED AND I
THINK THIS HAS TO -- WILL BE
DIRECTED SPECIFICALLY TO CARLOS
AND HILLARY, RECOGNIZING THAT
BUSY PRACTITIONERS THAT ARE DOG
PRIMARY CARE IN THE COMMUNITY
HAVE TO CARVE OUT TIME FOR CME,
BUT ALSO ACKNOWLEDGING THAT THE
BIG ACADEMIES AND ORGANIZATIONS
DO HAVE ANNUAL MEETINGS.
ARE THERE OPPORTUNITIES TO
INTRODUCE SOME CME AROUND THESE
TOPICS IN THESE ANNUAL MEETINGS
THAT OCCUR AN IF SO, HOW DO WE
HELP TO FACILITATE THAT SO WE
BEGIN TO ADDRESS THE POPULATION
OF HEALTHCARE PROVIDERS THAT
WE'RE TRYING TO REACH, WHO AGAIN
MAY NOT KNOW THAT THIS IS
SOMETHING THAT THEY WANT OR
NEED?
THE AVFM DOESN'T PUT ON ANY
NATIONAL CONFERENCES HOWEVER THE
AMERICAN ACADEMY OF FAMILY
PHYSICIANS DOES DO A BIG ANNUAL
CONFERENCE.
THE NEXT ONE IS GOING TO BE IN
PHOENIX, AS A MATTER OF FACT.
BUT ONE WAY TO GET ON TO THE
CURRICULUM OF THAT NATIONAL
CONFERENCE IS TO APPLY TO THE
EDUCATION COMMISSION TO FOR
EXAMPLE GET ON NEXT YEAR'S
SCHEDULE AND HAVE A PRESENTATION
ON EDEMA THERE.
IT'S JUST AN APPLICATION PROCESS
THROUGH THE AAFP, AND YOU'LL
PROBABLY HAVE SOME INTEREST
BECAUSE A LOT OF US FAMILY DOCS
WANT TO KEEP ABREAST OF WHAT'S
HAPPENING AND EVEN IF WE DON'T
SEE IT THAT OFTEN, IT'S
SOMETHING WE CAN CATCH UP ON,
THEY'LL PRESENT THEMSELVES TO A
SEMINAR OR A LECTURE ON
LYMPHADEMA.
SO I WOULD SUGGEST GETTING IN
CONTACT WITH THE AMERICAN
ACADEMY OF FAMILY PHYSICIANS CME
COMMITTEE.
>> WONDERFUL.
HILLARY?
SORRY, YOU'RE MUTED.
>> SORRY.
WE RUN A VERY LARGE MEETING
EVERY YEAR, AND THERE'S A WHOLE
PROPOSAL PROCESS, THERE'S A
COUPLE MECHANISMS TO GET
SOMETHING INCLUDED THERE.
FIRST OFF, IT HAS TO BE OF
IMPORTANCE TO A LARGE PORTION OF
THE PEOPLE ATTENDING.
SO AGAIN, THAT GETS BACK TO THE
DATA AND THE ADVOCACY PART OF
THIS.
SECOND, IT CAN BE BUNDLED IN
WITH SOMETHING LESS COMMON BUT
IMPORTANT DISEASES, SUGGEST MAY
MISS IN YOUR PRACTICE, SOMETHING
THAT'S CLINICALLY RELEVANT, THAT
IT'S IMPORTANT, THAT YOU
WOULDN'T WANT TO MISS IT, SO YOU
CAN GET A COLLABORATIVE SORT OF
PRESENTATION.
THE THIRD IS THAT ALL OF OUR
SECTIONS AND COMMITTEES SPONSOR
A PROGRAM WITHIN THE BODY OF OUR
MEETING.
GENETICS OR -- IF THEY WERE
WILLING TO ALLOCATE A PORTION OF
THEIR PROGRAM TO EDUCATION ABOUT
THIS TOPIC, THAT THEY CHOOSE
WHAT IS THEIR CONTENT, SO AS
OPPOSED TO THE NATIONAL THE
COMMITTEE FOR THE GENERAL
PROGRAM, SO THAT WOULD BE
ANOTHER VEHICLE.
SO WHAT YOU NEED IS A CHAMPION.
TO DO THAT.
SO CERTAINLY FROM OUR
PERSPECTIVE, ACCESSIBLE TO THE
12 TO 15,000 PEDIATRICIANS THAT
ARE GOING TO GO TO THE MEETING.
>> EXACTLY.
THAT'S EXACTLY THE KIND OF INPUT
WE WERE HOPING TO GET.
RELEVANT AS TO WHAT IS BEFORE
US.
JOEL, I THINK YOU HAVE YOUR HAND
UP.
>> ONE THING THAT CAME UP BEFORE
ABOUT LONGITUDINAL ASSESSMENTS,
ET CETERA, IN PULMONARY, THERE'S
A PROBLEM THEY HAVE DURING
COVID, AND THAT IS THAT HAPPY
HYPOXEMIA.
SO PATIENTS DON'T REALIZE WHAT'S
GOING ON.
AND THEY HAVE SATURATIONS IN THE
70s.
SO ONE WAY OF APPROACHING IT IS
BY DIAGNOSTICS.
SO IN ANY OF THE PROCESSES WE'RE
DISCUSSING IN LYMPHADEMA, FOR
EXAMPLE, YOU'RE CONCERNED ABOUT
SOMETHING DEVELOPING.
PART OF THE ISSUE IS THE
DIAGNOSTIC.
SO WHAT'S HAPPENING NOW IS
THROUGH NHLBI, WE'RE ABLE TO GET
AN SBIR TO DEVELOP SOMETHING
THAT WILL TELL US HOW SOMETHING
IS DOING, AND THEY'LL SEND IT
DIRECTLY TO A PHYSICIAN'S
OFFICE, YOU DON'T HAVE TO SEE
THE PATIENT, AND THE WAY WE KNOW
THIS IS RELEVANT IS WE KNOW WHEN
PATIENT IS HAVING A PROBLEM AND
NOT.
AND I THINK THE SAME THING MAY
BE ABLE TO HELP WITH LYMPHADEMA,
AND IT MAY BE ABLE TO WORK
THROUGH NHLBI.
SO VERY PRACTICAL.
IT'S A GOOD DIAGNOSTIC OR
WEARABLE, THIS MAY BE A SOLUTION
TO ONE OF THE PROBLEMS.
>> I THINK SOME OF THAT MAY COME
OUT OF THE ARPA LITE INITIATIVE
THAT IS RECEIVING LETTERS OF
INTENT THIS VERY WEEK, SO WITHIN
THE NEXT FIVE YEARS, MAYBE WE
WILL HAVE SOMETHING THAT NHLBI
CAN PARTNER WITH FOR THAT KIND
OF DISSEMINATION.
>> YOU CAN ALSO DO IT WITH A
COMPANY.
SBIR ALLOWS YOU TO DEVELOP A
COMPANY THAT WILL BE FUNDED FOR
DOING SOMETHING LIKE THIS.
SO IF THEY HAD A GOOD IDEA FOR A
DIAGNOSTIC AND YOU HAVE SOMEBODY
IN PRACTICE THAT WANTS TO DO
THIS AS PART OF A COMPANY, ET
CETERA, AS LONG AS IT'S LEGAL,
THIS MAY BE A SOLUTION THAT YOU
CAN DO NOW.
>> MAYBE WE NEED TO ADVERTISE TO
ALL THE ARPA APPLICANTS WHO
DON'T GET FUNDING, IF THEY CAN
DO IT THROUGH SBIR INSTEAD.
THAT'S WONDERFUL.
THAT'S A GREAT SUGGESTION.
I DON'T SEE ANY HANDS UP AT THE
MOMENT.
THIS MAY BE A GOOD OPPORTUNITY
TO ASK ONE OF OUR PATIENT
REPRESENTATIVES ON THE
COMMISSION IF YOU HAVE ANY
THOUGHTS OR COMMENTS OR
QUESTIONS FOR THIS PANEL FROM
THE PATIENT PERSPECTIVE.
VOLUNTEERS?
>> I SEE JEFF'S HAND.
>> OKAY, JEFF.
WE WANT TO HEAR FROM YOU TOO.
>> I WAS GOING TO LET YOUR
SOLICITATION STAND BEFORE I
JUMPED IN.
>> LET'S GO AHEAD.
I DIDN'T SEE A HAND RAISED, SO
LET'S GO.
>> SO THIS HAS BEEN SUPER
USEFUL.
ONE OF THE THINGS THAT THE
COMMISSION IS INTERESTED IN IS
HOW DO WE QUANTIFY PROGRESS
TOWARD THE GOALS -- THE
COMMISSION'S GOALS?
SO WHEN WE THINK ABOUT
EDUCATIONAL IMPERATIVES, WHEN WE
THINK ABOUT TEACHING SCIENTISTS,
WHEN WE THINK ABOUT TEACHING
CLINICIANS, WHEN WE THINK ABOUT
CONTINUING TO TEACH CLINICIANS
THROUGH THEIR CAREERS, WHAT ARE
INSTRUMENTS -- NOT INSTRUMENTS
MAY NOT BE THE RIGHT WORD, I
DON'T MEAN SURVEYS, BUT WHAT ARE
MECHANISMS OR APPROACHES THAT WE
SHOULD HAVE ON OUR RADAR FOR HOW
WE CAN QUANTIFY EFFECTIVE
TEACHING OF THESE THINGS TO
CLINICIANS AND SCIENTISTS?
>> GREAT QUESTION.
ANYBODY WANT TO TAKE A STAB AT
THAT?
LISA, PLEASE.
>> SURE.
I THINK THERE ARE LIKELY MANY
WAYS TO MEASURE THAT.
JUST TO THROW OUT AN EXAMPLE, I
MENTIONED ACCME, WHICH IS THE
ACCREDITATION COUNCIL FOR
CONTINUING EDUCATION, THEY HAVE
THE PARS SYSTEM WHERE CME
OFFERINGS ARE ENTERED INTO THAT
SYSTEM AND TRACKED AND MONITORED
AND THAT COULD BE -- IT'S NOT
OUR SYSTEM SO I CAN'T SPEAK FOR
THEM, BUT THAT IS POTENTIALLY
ONE OPTION TO IDENTIFY HOW --
AND LOOK AT TRENDS OVER THE
COURSE OF TIME, ARE WE SEEING
INCREASES IN THE NUMBER OF CME
ACTIVITIES THAT ARE OFFERED THAT
ADDRESS LYMPHATICS, LYMPHADEMA
IN THIS SPACE.
FOR POSTING THAT LINK.
WE DO SOMETHING DIFFERENT BUT
KIND OF SIMILAR ISH, BY ME I
MEAN THE WAC, WE ALSO -- IT'S
CALLED THE SCOPEs, WHICH IS AN
ACRONYM.
IT HAS TO DO WITH THE
CURRICULUM, I SHOULD KNOW THE
FULL ACRONYM AND I'M NOT -- I'M
BLANKING ON IT AT THE MOMENT.
IT'S NEW.
WE ACTUALLY JUST STARTED THAT
THIS YEAR, BUT IT'S A WAY FOR US
TO SURVEY ALL OF OUR MEMBER
SCHOOLS ABOUT THEIR CURRICULAR
PRACTICES.
IT'S A PRETTY IN DEPTH SURVEY.
IT'S OPEN FOR MANY MONTHS
ACTUALLY, AND IT OPENS IN THE
FALL, IT CLOSES IN THE -- EARLY
IN THE NEW YEAR.
THAT AFFORDS THE OPPORTUNITY FOR
OUR MEMBER SCHOOLS TO ENTER
INFORMATION, QUITE A LOT OF
INFORMATION ABOUT THEIR
CURRICULAR PRACTICES.
SO WHAT ARE THEY TEACHING IT,
HOW ARE THEY TEACHING IT, WHERE
ARE THEY TEACHING IT, AND A FAIR
AMOUNT OF DEPTH.
SO THAT'S ANOTHER OPPORTUNITY TO
TRACK AND LOOK AT PROGRESS MADE
OVER TIME.
SO I JUST WANTED TO MENTION --
AND THEN I KIND OF SKIPPED THAT
IMPORTANT MIDDLE SPACE BUT
THAT'S THE GME SPACE OR
RESIDENCY EDUCATION.
OF COURSE THE ACGME TRACKS AS
WELL A LOT OF CURRICULAR
INFORMATION THROUGH THEIR WEB
EDS SYSTEM OR WEBEDS.
>> GREAT.
ALEXA.
>> HI, EVERYBODY.
I'M A LYMPHADEMA PATIENT.
EARLIER WE WERE TALKING ABOUT
THIS MORNING THE IDEA OF
MOBILIZING PATIENT ADVOCACY, AND
AS A PATIENT, IT'S OFTEN REALLY
INTIMIDATING TO EDUCATE YOUR
PROVIDERS IF THEY DON'T KNOW
ABOUT YOUR LYMPHATIC CONDITION.
DO ANY OF YOU HAVE ANY INSIGHTS
OR THINGS THAT YOU DO IN YOUR
ORGANIZATIONS AS FAR AS PATIENT
EDUCATION FOR EDUCATING THEIR
CLINICIANS OR CONVERSATION
GUIDES OR WHAT HAVE BEEN SOME
WAYS THAT HAVE BEEN EFFECTIVE
AND NOT INTIMIDATING FOR
PATIENTS TO ADVOCATE FOR
THEMSELVES IN THAT SPACE AND
FEEL EMPOWERED IN DOING SO?
BECAUSE IT IS KIND OF SCARY
SOMETIMES.
>> DOESN'T LOOK LIKE WE HAVE ANY
TAKERS ON THAT.
CHRIS, WAS THAT YOU?
>> YEAH, I CAN SPEAK TO THAT.
SO ALEXA, THANK YOU FOR THE
QUESTION.
AS A MATTER OF FACT, YOU READ MY
MIND.
THAT WAS ACTUALLY ONE OF THE
THINGS THAT I WAS GOING TO BRING
UP, BUT I DIDN'T WANT TO
MONOPOLIZE THE CONVERSATION, WAS
ONE OF THE THINGS THAT WE DO IN
PHYSICAL THERAPY SCHOOL WHEN
WE'RE TALKING ABOUT HOW DO WE
GET CLINICIANS OR EVEN NEW
STUDENTS WHO'VE NEVER SEEN
SOMEONE WITH LYMPHADEMA IN THEIR
WHOLE LIVES BECAUSE THEY'RE
22 YEARS OLD AN THEY JUST DON'T
HAVE A LOT OF LIFE EXPERIENCE OR
CLINICAL EXPERIENCE YET IS
HAVING SOMEONE COME IN AND JUST
TELL THEIR STORY.
AND I THINK MAYBE THERE IS A --
PROBABLY THAT LEVEL OF
INTIMIDATION, BUT HONESTLY, YOU
KNOW, I THINK IT'S SOMETHING IF
YOU EVEN JUST REACH OUT TO LOCAL
HEALTHCARE PROGRAMS,
INSTITUTIONS, UNIVERSITIES, AND
THEN REALLY EMPOWERING THE
LYMPHADEMA PATIENT ADVOCACY
ORGANIZATIONS TO DO STUFF LIKE
THAT, CERTAINLY YOU WOULDN'T BE
NECESSARILY EXPECTED TO KNOW ALL
THE INS AN OUTS ABOUT
LYMPHADEMA, BUT FOR THE MOST
IMPORTANT THING I THINK IS
REALLY MOTIVATING.
STUDENTS OR FUTURE CLINICIANS
THAT, OH, MY GOSH, YES, THIS
PERSON HAS BEEN DOWN A PATH AND
THERE ARE SKILLS THAT I CAN DO
AND LEARN TO HELP THEM WITH
THAT.
I THINK EVEN IF IT DOESN'T
INSPIRE THEM RIGHT AWAY, THEY
KNOW ABOUT IT AND THEY REALIZE
IT.
SO I THINK THE MORE THAT YOU'RE
KIND OF YOURSELF AND THE MORE
YOU KIND OF BRING YOUR TRUTH TO
THE STORIES, AND EVEN IF IT'S
EMOTIONAL OR IF IT CHALLENGING
TO DO, SOMETIMES PEOPLE FEEL
LIKE, OH, I DON'T WANT TO BE
EMBARRASSED AND CRY ABOUT MY
STORY IN FRONT OF THE HEALTHCARE
PROVIDERS, NO, DO IT.
I SAY LET IT OUT, SHARE YOUR
WHOLE STORY AND THAT REALLY IS
IMPACTFUL.
WE DO THAT IN OUR PHYSICAL
THERAPY PROGRAMS WITH PEOPLE
WITH A HISTORY OF STROKE, PEOPLE
WITH SPINAL CORD INJURY, AND
EMBARRASSINGLY, WE PROBABLY
DON'T DO IT ENOUGH WITH PEOPLE
WITH LYMPHADEMA AND IN HINDSIGHT
AFTER YOUR QUESTION, WE SHOULD,
BECAUSE I THINK THEIR STORY IS
IMPORTANT AND IT DOES INSPIRE AT
LEAST STUDENT PHYSICAL
THERAPISTS AND CERTAINLY
HEALTHCARE PROVIDERS TO
UNDERSTAND THAT THESE FOLKS DO
HAVE A PATH AND THEY'RE LOOKING
TO US FOR HELP AND WE NEED TO
TRAIN OURSELVES TO HELP THEM.
SO THANK YOU FOR BRINGING THAT
UP.
>> GREAT.
CYNTHIA.
>> HI, EVERYONE.
JUST TO GIVE A BRIEF INTRO OF
MYSELF, MY NAME IS CYNTHIA
HUDSON, AND I AM A BREAST CANCER
SURVIVOR.
I'VE BEEN LIVING WITH LYMPHADEMA
FOR 25 YEARS, ABOUT, SO I'VE
SEEN A LOT OF PROGRESS IN THE
FIELD, BUT I NO LONGER LIKE
FOLLOW UP WITH AN ONCOLOGIST, I
HAVEN'T FOR MANY YEARS, AND
THANK YOU, CHRIS, FOR WHAT YOU
SAID BECAUSE I HAVE HAD THE
OPPORTUNITY TO GO TO SPEAK TO
PHYSICAL THERAPISTS AND THEIR
COURSES PROBABLY TWO OR THREE
TIMES, AND IT'S BEEN VERY
REWARDING FOR ME AND HOPEFULLY
FOR THEM AS WELL, BUT I'VE NEVER
THOUGHT TO REACH OUT TO SOME
PROGRAMS TO VOLUNTEER TO COME
AND SPEAK.
I WAS ASKED BECAUSE MY PHYSICAL
THERAPIST GRADUATED FROM SCHOOL
AND HER PROFESSOR ASKED HER IF
SHE KNEW ANYONE THAT WOULD COME
IN AND SPEAK.
SO THAT'S SOMETHING THAT I WOULD
DEFINITELY PUT ON MY LIST TO DO.
SO ONE OF MY QUESTIONS WAS,
LET'S JUST GO BACK A LITTLE BIT.
SO MY LYMPHADEMA WAS VERY OUT OF
CONTROL.
I'VE HAD 24 LYMPH NODES REMOVED,
HAD A MASTECTOMY, RADIATION
THERAPY, CHEMOTHERAPY, AND SO AT
THE TIME, I COULDN'T FIND A WAY
TO TREAT -- A PLACE TO GO TO GET
TREATED FOR MY LYMPHADEMA.
I FOUND ONE PLACE IN NEW YORK,
AND IT WAS VERY EXPENSIVE AND I
COULD NOT AFFORD IT.
INSURANCE DIDN'T COVER AT THE
TIME.
SO FAST FORWARD, THERE ARE STILL
CHALLENGES WITH INSURANCE
COMPANIES AND COVERAGE, AND
RIGHT NOW I HAVE TO GET GARMENTS
RENEWED, NEW GARMENTS, AND I
HAVE TO COME OUT OF POCKET FOR
IT BECAUSE MY INSURANCE COMPANY
IS NOT PAYING THE PROVIDER.
STRAIGHT AWAY.
SO I HAVE TO WAIT UNTIL THAT
HAPPENS, WHICH CAN TAKE MONTHS,
AND I CAN'T WAIT THAT LONG
BEFORE I HAVE TO GET A NEW
SLEEVE AND NIGHTTIME GARMENT.
SO MY QUESTION WAS, ONE, HOW CAN
I BETTER ADVOCATE FOR
INDIVIDUALS LIVING WITH
LYMPHADEMA IN A MORE PUBLIC WAY,
BECAUSE I FEEL LIKE I DO IN
TERMS OF LIKE -- I'M PART OF A
GROUP AT MEMORIAL SLOAN
KETTERING FOR PEOPLE WITH
LYMPHADEMA, BUT I THINK THERE
NEEDS TO BE JUST A GREATER SENSE
OF PUBLIC AWARENESS ABOUT HOW
MANY PEOPLE ARE AFFECTED BY
THIS, AND SO I'M JUST TRYING TO
THINK OF WAYS THAT I CAN
ADVOCATE MORE PUBLICLY TO BRING
ABOUT MORE AWARENESS, AND ALSO
ADVOCATE TO GET INSURANCE
COMPANIES TO UNDERSTAND THE
IMPORTANCE OF MAINTENANCE
BECAUSE PREVENTION IS VERY
IMPORTANT, BUT I'VE HAD SEVERAL
BOUTS OF CELLULITIS OVER THE
YEARS, TO WHICH MANY OF THE
TIMES, I'VE HAD TO BE
HOSPITALIZED, AND SO I KNOW
THERE WILL BE AT SOME POINT
ADVANCEMENTS IN WHAT INSURANCE
COMPANIES ARE COVERING AND HOW
THEY'RE LOOKING AT THIS
CONDITION.
BUT THERE ISN'T AT THE TIME.
AND FOR SOME PEOPLE LIKE MYSELF
AT THE TIME, I CAN AFFORD TO GET
THE SLEEVES AND COME OUT OF
POCKET, BUT OTHER PEOPLE CAN'T
DO THAT.
AND I'VE BEEN IN A SITUATION
WHERE I COULDN'T DO THAT ONE
TIME, AND IT WORSENED MY
LYMPHADEMA.
SO JUST SOME ADVICE ON BEING A
BETTER ADVOCATE TO BRING ABOUT
PUBLIC AWARENESS AND ALSO TO BE
THE VOICE IN THE EAR OF
INSURANCE COMPANIES TO LET THEM
KNOW, YOU KNOW, HOW BAD THIS CAN
GET FOR INDIVIDUALS THAT ARE
LIVING WITH IT BECAUSE THEY'RE
NOT COVERING CERTAIN GARMENTS OR
CERTAIN OTHER THINGS NEEDED FOR
MAINTENANCE.
>> THANKS, CYNTHIA.
I'M GOING TO GO ON WITH THE
HANDS RAISED IN A MOMENT, BUT I
JUST GOT A MESSAGE FROM DR. KIM
STEELE, WHO IS THE MANAGER OF
THE ARPA LIGHT PROGRAM FOR
LYMPHATICS TO TELL US, JOEL,
THAT THEY ACTUALLY HAVE A
SOLICITATION FOR SUBMISSIONS
THROUGH SBIR FOR EXACTLY WHAT
YOU'RE DISCUSSING, AND I BELIEVE
SELEN WILL PUT THE LINKS IN THE
CHAT.
SO THAT WAS A VERY TIMELY
COMMENT, JOEL, AND IT GOT AN
IMMEDIATE RESPONSE.
SO I'D LIKE TO MOVE ON TO
MELISSA, I GUESS IS THE NEXT
HAND UP.
>> OKAY.
MY VIDEO WON'T START BECAUSE THE
HOST HAS STOPPED IT, THIS
HAPPENED EARLIER AND IF YOU CAN
HEAR ME -- HERE WE GO.
NOW YOU CAN SEE ME.
I JUST WANT TO COMMEND ALEXA AND
CYNTHIA FOR WHAT THEY'VE DONE,
AND THE QUESTION CAME UP HOW
CAN, YOU KNOW, AS A PATIENT, HOW
CAN YOU EDUCATE A PHYSICIAN YOU
MAY SEE?
I CAN RELATE TO THAT AS SOMEONE
WHO I SUFFER FROM CELIAC
DISEASE, AND THAT'S THE
GLUTEN-FREE THING.
30 YEARS AGO, WHEN IT FIRST
STARTED UP, NO ONE HAD HEARD OF
IT.
WHEN I WENT TO A PHYSICIAN, THEY
DIDN'T KNOW WHAT I WAS TALKING
ABOUT.
SO MY LOCAL SUPPORT GROUP, AND
THIS COULD BE SOMETHING THAT
SMALLER SUPPORT GROUPS COULD DO,
DECIDED TO SEND INFORMATION
PACKETS TO BASICALLY ALL THE
RELEVANT PHYSICIANS IN THE
GREATER HOUSTON AREA, AND WE
NOTICED WITHIN THE FIRST TWO
YEARS, WE WERE FLOODED WITH NEW
MEMBERS WHO CAME IN AND THEY
WERE REFERRED BY -- OR HAD HEARD
ABOUT US FROM SOME OF THE
PHYSICIANS THAT WERE ON OUR HIT
LIST THAT HAD BEEN COMPLETELY
UNAWARE OF WHAT WE WERE.
SO I DON'T KNOW IF SOME KIND OF
A CAMPAIGN LIKE THAT, IT
WOULDN'T HAVE TO BE MAILING
PACKAGES, YOU KNOW, PAPER, BUT
MAYBE EMAILS OR SOMETHING LIKE
THAT, TO -- JUST TO EDUCATE THE
ONES YOU KNOW ABOUT, BECAUSE
EVERY TIME YOU VISIT A PHYSICIAN
OR ANOTHER PRACTITIONER, PUT
THEIR NAME ON A LIST AND SEND
SOMETHING TO THEM?
I DON'T KNOW.
IT SEEMED TO WORK FOR US.
>> IT SOUNDS LIKE A GREAT IDEA
AND A LOT OF WORK, RIGHT?
>> IT WAS, BUT IT WAS
WORTHWHILE.
>> ABSOLUTELY.
I SEE WE'RE EDGING UP ON THE END
OF OUR ALLOTTED TIME FOR THIS
PANEL, SO I WANT YOU TO BE
THINKING ABOUT LAST COMMENTS OR
QUESTIONS.
I DO HAVE A HAND UP FROM BETSY.
MAYBE WE CAN TURN TO YOU NEXT.
>> YEAH, JUST A QUICK COMMENT.
I JUST WANTED TO ACKNOWLEDGE,
CYNTHIA HAD SORT OF SOME ACTION
ITEMS, I THINK, WITH HER
COMMENT, AND I THINK IN TERMS OF
REIMBURSEMENT, AND CERTAINLY I'M
NOT AN EXPERT IN THAT REALM, BUT
MY HOPE IS WITH THE PASSAGE OF
THE LYMPHADEMA TREATMENT ACT,
AND WITH ACTION BY THE CENTERS
OF MEDICARE AND MEDICAID, I'M
NOT SURE WHO YOUR INSURANCE
PROVIDER IS, BUT WE GENERALLY
SEE PRIVATE PAYORS FOLLOW SUIT
ONCE MEDICARE AND MEDICAID AND
SOMETIMES I'VE ACTUALLY SEEN
ESPECIALLY COUPLE TOM GARMENTS
WRITTEN AS SPECIFIC EXCLUSION,
SO INTERESTING TO DO SOME
RESEARCH AND POTENTIALLY GET
SOME OF YOUR HEALTHCARE
PROVIDERS TO BE ABLE TO
WRITE SOME LETTERS ON YOUR
BEHALF TO ADVOCATE FOR WHAT
REALLY HAPPENS IN TERMS OF THE
COST TO THEM AS A PROVIDER, IF
YOU'RE NOT IN ADEQUATE
COMPRESSION, IT'S PLACING YOU AT
HIGHER RISK FOR CELLULITIS,
INFECTION OR RECURRENCE OF THOSE
TYPES OF THINGS.
SO I THINK THAT UTILIZING THOSE
PROVIDERS TO HELP YOU ADVOCATE.
I THINK IN TERMS OF OTHER WAYS
TO GET YOUR MESSAGE OUT, I'M
FINDING THAT INDIVIDUALS WHO ARE
WILLING TO SHARE THEIR LIVES IN
A SOCIAL MEDIA FORMAT ABOUT WHAT
IT MEANS TO BE LIVING WITH
LYMPHADEMA, SHARING YOUR LIVED
EXPERIENCE IN THAT FORMAT
THROUGH TIK TOK OR INSTAGRAM IS
REALLY IMPACTFUL, AND ALLOWING
PROVIDERS AS WELL AS THE GREATER
COMMUNITY TO UNDERSTAND JUST
WHAT THAT REALLY MEANS IN TERMS
OF HOW MUCH TIME IT TAKES TO
CARE FOR THAT AFFECTED LIMB AND
HOW IT MAY OR MAY NOT BE
IMPACTING YOUR DAY TO DAY LIFE.
I HAVE FOUND TO BE REALLY
IMPACTFUL.
I'VE SHARED IT WITH STUDENTS SO
THAT THEY CAN HAVE A GREATER
APPRECIATION WHEN WE'RE NOT ABLE
TO BRING PATIENTS IN, BUT I
THINK THE MORE WE CAN BE SORT OF
PUBLIC FACING -- IT'S ONE THING
FOR US AS PROVIDERS TO SHARE
THAT, BUT I DO THINK THE IMPACT
FROM FIRSTHAND LIVED EXPERIENCES
IS SO HELPFUL, BECAUSE I DO
THINK FROM A PERSPECTIVE OF
HEALTHCARE, WE'RE ALL BUSY,
WE'RE BEING FORCED TO LIMIT OUR
AMOUNT OF TIME WITH PATIENTS
BECAUSE OF CHALLENGES WITH
PAYMENT AND REIMBURSEMENT, BUT I
THINK IT HELPS US TO REMEMBER
THAT THERE'S A PERSON BEHIND
THAT STORY, AND THAT IT IMPACTS
EACH PERSON AT A VERY INDIVIDUAL
LEVEL AND FORCES US TO
RE-EVALUATE AS A PROVIDER WHY AM
I HERE, AND WE'RE REALLY HERE TO
BE ABLE TO IMPROVE AN
INDIVIDUAL'S QUALITY OF LIFE,
WALK WITH YOU ON THAT PATH.
SO IF YOU'RE SOMEONE WHO WOULD
BE INTERESTED IN THAT
PUBLIC-FACING EXPERIENCE, I
THINK THERE'S A LOT OF VALUE AND
I'VE LEARNED A LOT FROM MY
PATIENTS AND AT LEAST BEING ON
SOME OF THOSE SOCIAL MEDIA PAGES
AND APPRECIATE HOW PEOPLE ARE
SHARING THEIR LIVES IN THAT
FORMAT.
>> THOSE ARE GREAT POINTS.
WE HAVE LOOK LIKE FOUR MINUTES.
I WONDER IF ANYBODY HAS A
BURNING LAST STATEMENT OR
QUESTION?
WE REALLY APPRECIATE EVERYBODY'S
INPUT TODAY.
IT'S BEEN VERY ILLUMINATING TO
HEAR THE DIFFERENT VANTAGE
POINTS FROM WHICH WE COME TO
THIS SUBJECT MATTER, AND I HOPE
THAT WE AS A COMMISSION CAN TAKE
INTO ACTION MANY OF THE IDEAS
THAT WE HEARD ABOUT TODAY.
WE REALLY APPRECIATE KNOWING THE
STATS OF OUR STAKEHOLDERS OF
WHICH YOU ARE ALL VERY IMPORTANT
REPRESENTATIVES, SO THANK YOU
VERY MUCH FOR YOUR INPUT ON
THIS, AND WE ENCOURAGE YOUR
CONTINUED INPUT AS THIS
COMMISSION MOVES FORWARD WITH
ITS DELIBERATIONS.
SO THANKS VERY MUCH.
BUYBYE, EVERYONE.
>> THANK YOU, EVERYONE.
I WOULD LIKE TO SAY THANK YOU TO
ALL THE PANELISTS TODAY, AND WE
WOULD LIKE TO -- NHLBI WOULD
LIKE TO THANK YOU, AND IF YOU
HAVE ANY OTHER THINGS THAT COMES
TO YOUR MIND THAT PERTAINS TO
OUR DISCUSSIONS TODAY, PLEASE
SEND TO MY WAY.
WE ARE GOING TO SHARE IT WITH
THE NCLD, AND THANK YOU TO
EVERYONE WHO WAS LISTENING ON
NIH VIDEOCAST AS WELL.
YOUR FEEDBACK IS VERY VALUABLE
AND WE ARE RECORDING THEM TOO.
AND ANY QUESTIONS, PLEASE
DON'T -- OR CONCERNS, PLEASE
DON'T HESITATE TO SEND TO OUR
WAY.
AND WITH THAT, WE ARE GOING TO
ADJOURN THE CLOSED SESSION AND
THE NCLD MEMBERS SHOULD STAY FOR
THE -- SORRY, WE ARE ADJOURNING
THE OPEN SESSION AND WE ARE
GOING TO PROCEED TO THE CLOSED
SESSION.
HAVE A GOOD AFTERNOON.