THANK YOU
FOR JOINING US FOR THE FIRST OF
THE TWO VIRTUAL TOWN HALL.
TODAY WE'LL ENGAGE WITH
ORGANIZATIONS THAT PROMOTE
EDUCATION, RESEARCH AND ADVOCACY
FOR PEOPLE LIVING WITH
LYMPHEDEMA AND THOSE LIVING WITH
THESE CONDITIONS.
THEY'LL SHARE THEIR EXPERIENCES
AND HIGHLIGHTS SUPPORT AND I'M A
PROGRAM AT THE NATIONAL HEART
LUNG BLOOD INSTITUTE IN THE
DIVISION OF CARDIOVASCULAR
SCIENCES AND THE EXECUTIVE
SECRETARY SERVING AS LIAISON
BETWEEN THE NCLD AND LEADERSHIP
AND SERVING THE SUPPORT
STRUCTURE.
I'M GOING TO MAKE A FEW HAVE THE
ADMINISTRATIVE ANNOUNCEMENTS
BEFORE WE START.
FIRST, I WANT TO WELCOME OUR
PUBLIC VISITORS AS WELL AS STAFF
TO THIS BROADCAST BROUGHT BY NIH
VIDEOCAST AND WE'RE LOOKING
FORWARD TO YOUR FEEDBACK.
LISTENERS IN THE VIRTUAL
ENVIRONMENT CAN USE THE SEND
LIVE FEEDBACK BUTTON.
ALL YOUR QUESTIONS AND FEEDBACK
WILL BE RECORDED AND TAKEN INTO
COMMISSION AFTER THE MEETING.
THE MEETING IS BEING WEBCAST AND
RECORDED.
THE VIDEO WILL BE ARCHIVED AND
AVAILABLE FOR THE PUBLIC AND NIH
COLLEAGUES FOR AN INDEFINITE
AMOUNT OF TIME.
A BRIEF OVERVIEW OF THE AGENDA
IS STARTING WITH THE WELCOME
REMARKS BY THE NCLB CO-CHAIRS
STANLEY ROCKSON AND STEPHANIE
DWYER -- DREYER AND FOR THOSE
WHO SUBMITTED SLIDES SAY NEXT
SLIDE FOR THE AV TEAM TO ADVANCE
YOUR SLIDES.
AFTER THE PRESENTER FINISHES
PLEASE ANNOUNCE THE NEXT
PRESENTER FROM YOUR
ORGANIZATION.
I WILL REMIND EVERYONE OF TIME
KEEPING.
THE NCLB CORE CHAIR WILL LEAD
THE DISCUSSION AND THE MEETING
WILL ADJOURN WITH THE CLOSING
REMARKS BY THE CO-CHAIR
DR. ROCKSON.
WE REQUEST EVERYONE IN ZOOM TO
TURN THEIR CAMERA ON WHEN
SPEAKING AND USE THE HAND RAISE
FUNCTION AND COMMUNICATION OF
CHAT WILL BE SAVED FOR THE
RECORD OF THE COMMISSION.
WITH THAT IT'S MY PLEASURE TO
PASS THE MIKE TO DR. STANLEY
ROCKSON ONE OF THE CO-CHAIRS FOR
WELCOMING REMARKS.
STAN.
>> THANK YOU AND WELCOME
EVERYONE TO THIS VERY IMPORTANT
MORNING WHICH REPRESENTS A
SEMINOLE ASPECT OF THE WORK OF
THE NATIONAL COMMISSION.
I WANT TO UNDERSCORE THE NOTION
THAT THIS COMMISSION AND YOU'LL
HEAR ABOUT OUR CHARGE
MOMENTARILY, HAS BEEN DESIGN TO
SERVE THE NEEDS OF THE PEOPLE
AND ORGANIZATIONS REPRESENTED
HERE TODAY.
IT'S VERY IMPORTANT FOR US TO
HEAR THE VOICE OF THE PATIENTS
WHO ARE AFFECTED BY LYMPHATIC
DISEASE AND BY THE ADVOCACY
GROUPS THAT REPRESENT THEM.
IT'S THE FIRST OF TWO TOWN HALL
MEETINGS FIRST ON LYMPHEDEMA AND
DEVOTED TO THE PROBLEMS OF
LYMPHATIC VASCULAR
MALFORMATIONS.
SO WE'RE DELIGHTED YOU'RE HEAR
TO SHARE YOUR STORIES WITH US SO
THIS CAN BE INTEGRATED WITH
EVERYTHING THAT WE HAVE BEEN
ACQUIRING DURING THE WORK OF
THIS COMMISSION IN ORDER TO
PROVIDE OUR FINAL REPORT TO THE
ADVISORY COUNCIL OF THE NATIONAL
HEART, LUNG AND BLOOD INSTITUTE.
THANK YOU FOR BEING HERE.
WITH THAT I WILL MOVE AHEAD TO
TALK ABOUT THE NATIONAL
COMMISSION.
THIS IS BY WAY OF OVERVIEW FOR
YOU TO UNDERSTAND THIS IS A
TRANSPARENT INCLUSIVE AND PUBLIC
FORUM TO ASSESS CRITICAL
CHALLENGES, GATHER INPUT AS WE
ARE THIS MORNING FROM THE
DIVERSE SPECTRUM OF
STAKEHOLDERS, TO IDENTIFY THE
GAPS AND CHALLENGES THAT EXIST
IN PROVIDING THE APPROPRIATE
CARE, RESEARCH AND
INFRASTRUCTURE FOR LYMPHATIC
DISEASE AND TO PROVIDE
ACTIONABLE PROGRESS, UPDATES AND
FINAL REPORT TO THE NHLBI
ADVISORY COUNCIL.
I WANT EVERYONE TO UNDERSTAND
THAT OUR COMMISSION, WHICH IS
COMPRISED OF 15 COMMISSIONERS
REPRESENTING A VARIETY OF
BACKGROUNDS AND EXPERTISE HAS
BEEN SUB DIVIDED INTO A SERIES
OF COMMITTEES THAT ARE DEVOTED
TO ADDRESSING EACH OF THE
INDIVIDUAL ELEMENTS THAT WE
THINK ARE IMPORTANT IN
UNDERSTANDING THE PROBLEM OF
LYMPHATIC DISEASE AND ITS
POTENTIAL SOLUTIONS.
HERE YOU SEE THE COMMITTEES
LISTED WITH THE RELEVANT MEMBERS
OF THE COMMISSION THAT SERVE IN
EACH OF THESE COMMITTEES.
WE HAVE SCIENTIFIC ADVANCEMENT,
EDUCATIONAL IMPERATIVES,
MEASURABLE RESULTS AND GROWTH
AND TOOLS.
>> WITH THAT WE CAN START.
I CAN HELP WITH INTRODUCING
EVERYONE IF YOU GUYS LIKE IT.
SO WE'LL START WITH THE
LYMPHOASSOCIATION OF NORTH
AMERICA AND DOCTORS KAREN BOCK
AND DAVID DOUBBLESTEIN WILL BE
SHARING THEIR VIEWS WITH US.
KAREN AND DAVID, YOU'RE ON.
>> THANK YOU SO MUCH TO THE
COMMISSION FOR ASKING US TO
SPEAK TODAY.
MY NAME IS KAREN BOCK.
I'M AN ASSISTANT PROFESSOR AT
RUTGERS UNIVERSITY AND HERE IN
KANSAS CITY, MISSOURI.
I'M REPRESENTING THE LYMPHOLOGY
ASSOCIATION OF NORTH AMERICA.
THE MISSION IS TO PROVIDE
STANDARDS OF CERTIFICATIONS FOR
HEALTH CARE PROFESSIONALS
HELPING MANAGE LYMPHEDEMA AND
OUR ORGANIZATIONS WAS FOUNDED AS
PART OF THE CHARGE FROM THE
AMERICAN CANCER SOCIETY
REALIZING PATIENTS WHO HAVE
LYMPHEDEMA WERE NOT GETTING THE
MOST ORGANIZED CARE AND NEEDED A
NATIONAL CERTIFICATION EXAM FOR
THERAPISTS TO KNOW WHO HAS THE
KNOWLEDGE TO MANAGE LYMPHEDEMA.
FROM OUR CHALLENGES AS FAR AS
THREE SIGNIFICANT CHALLENGES FOR
OUR ORGANIZATION.
REALLY, WHAT I WANTED TO START
WITH IS RESEARCH FOR CLINICAL
LEVEL QUESTIONS.
OUR MEMBERS ARE ON THE GROUND
AND TREATING PATIENTS EVERYWHERE
BUT WE DON'T HAVE A LOT OF
RESEARCH REGARDING CLINICAL
QUESTIONS.
AN EXAMPLE IS MY DISSERTATION
WORK WAS OUT OF MY CLINICAL WORK
BECAUSE I HAD PATIENTS ASKING ME
WHY THEY NEEDED TO HAVE CERTAIN
BRANDS OF GARMENTS OR OF
NIGHTTIME GARMENTS TO WEAR AT
NIGHT TO MANAGE THEIR LYMPHEDEMA
AND I HAD NO ANSWER I HAD TO
RESEARCH SAYING YOU'LL BE ABLE
TO SLEEP BETTER OR DO YOUR ADLs
BETTER AND LED TO MY
DISSERTATION RESEARCH TO EXAMINE
WHAT SLEEP LOOKS LIKE IN
LYMPHEDEMA PATIENTS AND CERTAIN
INTERVENTIONS AND LOOKING AT
WHAT INTERVENTIONS ARE BEST FOR
CERTAIN CLIMATES OR CERTAIN WORK
ENVIRONMENTS.
WE DON'T HAVE THE ANSWER TO ANY
OF THOSE KINDS OF QUESTIONS AS
CLINICIANS.
SECOND CHALLENGES FOR OUR
MEMBERS ARE THE VALUE FOR HEALTH
SYSTEMS AND PROVIDER TRAINING
AND REIMBURSEMENT.
U.S.-BASED LYMPHATIC TRAINING AT
LEAST 135 HOURS OF CONTINUING
EDUCATION AND THAT'S AN
INVESTMENT FROM HEALTH SYSTEM
STANDPOINT.
THE CLINICIANS OFTEN HAVE TO BE
AWAY A WEEK AT A TIME TO GO ON
TRAINING AND THEN THE
REIMBURSEMENT IS ONLY CONTINUING
TO DECLINE FROM A THERAPIST'S
STANDPOINT THERE'S LITTLE RETURN
ON THE INVESTMENT BECAUSE THEY
TAKE MAINTENANCE AND MONEY.
THOSE IN THE HEALTH FIELD
UNDERSTAND BY INVESTING IN THESE
SYSTEMS WE'RE PREVENTING
PATIENTS FROM GETTING IN THE
HOSPITAL FOR CELLULITEIS AND
TURNS INTO SEPSIS AND THE
PREVENTIVE MAINTENANCE OF DOLLAR
SAVING IS HARD TO CAPTURE.
AND WE HAVE SCALES FREQUENT IN
SURVEILLANCE BUT DON'T HAVE
INFRARED TECHNOLOGY ALL THE
TIMES.
THE TOOLS ARE IN HIGH LEVEL
MEDICAL CENTERS WHERE THEY HAVE
THE MEDICAL EQUIPMENT TO DO
THAT.
MOST THERAPISTS DO NOT GET AN
ICG READ OUT ARE WHERE THE BACK
FLOW IS IN PATIENTS AND AMAZING
AT TREATING PATIENTS WITHOUT
THAT KNOWLEDGE AND IF YOU HAVE
THAT THINK ABOUT THE AMOUNT OF
VISITS WE MAY BE ABLE TO SAVE
FOR PATIENTS AND GET THEM BETTER
QUICKER IF WE HAD THE KNOWLEDGE
AT OUR FINGER TIPS ALL THE TIME.
THAT'S AN EXAMPLE OF WHERE WE
CAN HAVE IMPROVEMENT IN OUR
SYSTEMS.
THE ELECTRONIC HEALTH RECORD
DISCONNECT.
OUR CLINICIANS ARE STILL WASTING
VALUABLE TIME TRYING TO
DETERMINE PROCEDURES AND
TREATMENTS AND PERTINENT
INFORMATION THEIR PATIENTS HAVE
HAD THOUGH THE ELECTRONIC HEALTH
RECORD IS OFTEN WELL AND ROBUST
WITHIN ONE HEALTH SYSTEM, IF YOU
HAD TO STEP OUT OF YOUR HEALTH
SYSTEM THEY DON'T INTEGRATE VERY
WELL AND SOMETIMES CLUNKY, IF AT
ALL.
OUR MEMBER THERAPISTS ARE TRYING
TO FIND PERTINENT, CRITICAL
INFORMATION ABOUT THEIR PATIENTS
AND IT'S TAKING TIME TO DO THAT.
AND THAT REALLY BOILS DOWN TO
OUR THERAPISTS DON'T HAVE ENOUGH
TIME FOR PATIENTS MUCH LESS TIME
TO WORK WITH THE MEDICAL RECORD.
AN EXAMPLE IS A COLLEAGUE OF
MINE WORKS IN A FAIRLY POPULATED
URBAN AREA ON THE EAST COAST AND
STILL ONE OF A HANDFUL OF
THERAPISTS FOR HER 30 TO 45 MILE
RADIUS AND THERE'S A TWO TO
THREE MONTH WAIT FOR HER
PATIENTS TO GET AN EVALUATION
FOR THEIR LYMPHEDEMA MUCH LESS
THERAPISTS SERVING A MORE RURAL
OR CRITICAL ACCESS HOSPITAL
SITUATION.
SO, THOUGH THE TRAINING IS
CUMBERSOME AND NEED TO INVEST WE
STILL NEED MORE THERAPISTS AND
MORE ACCESS FOR PATIENTS.
AND THEN AS WE THINK ABOUT THE
AVAILABILITY OF SUPPLIES AND
GARMENTS, I WANT EVERYBODY TO
PAUSE FOR A MOMENT IF YOU CAN,
THINK ABOUT THE LAST TIME YOU
VISITED A PROVIDER OR CHILD
FAMILY MEMBER WHO VISITED YOUR
HEALTH CARE PROVIDER OR P.A. OR
APRN AND PROVIDED A PRESCRIPTION
AND IT WAS ELECTRONICALLY
TRANSMITTED TO THE PHARMACY
CLOSE TO YOU AND YOU PICKED IT
UP AND IF YOU HAD NEW DRUG
COVERAGE YOU HANDED IT TO THE
PHARMACIST AND DETERMINED YOUR
CO-PAY AND WERE ABLE STILL ABLE
TO PICK UP YOUR MEDICINE THAT
DAY.
THIS EASE OF THE INTERVENTION
DOES NOT EXIST IN THE LIX DENA
IT -- LYMPHEDEMA THERAPY AT THIS
TIME.
THE THERAPIST AND PATIENT DECIDE
COURSE OF TREATMENT AND WHAT
FINAL INTERVENTION WILL WORK THE
BEST.
THE THERAPIST FREQUENTLY HAS TO
GO BACK TO THE PROVIDER TO GET A
PRESCRIPTION FOR THE GARMENT AND
THEN SEND THE PRESCRIPTION
LIKELY TO A NATIONAL PROVIDER.
THERE'S NOT USUALLY A LOCAL
EQUIPMENT PROVIDER IN YOUR CITY
OR STATE OR IN NETWORK FOR YOUR
INSURANCE AND ALL THAT WILL TAKE
TWO TO THREE WEEKS, SOMETIMES
BEFORE YOU KNOW THE CO-PAY AND
THEN MAYBE ANOTHER TWO TO THREE
WEEKS TO ACTUALLY GET THE
INTERVENTION.
IT'S QUITE A DIFFERENT SET UP
THAN JUST WHAT WE HAVE FOR
PRESCRIPTION DRUGS RIGHT NOW AND
IT'S SLOWING DOWN PATIENT CARE
AND SLOWING DOWN PATIENTS
ABILITY TO CONTINUE ON WITH
THEIR LIVES.
SO THOSE ARE OUR CHALLENGES FROM
A LYMPHEDEMA STANDPOINT.
SO OUR TOP THREE WISHES THAT
MIGHT IMPROVE THE LIVES OF THE
CLINICIANS AND PATIENTS THAT WE
SERVE WOULD BE TO HAVE RESEARCH
TO DIRECT US TO THE MOST
EFFICIENT TREATMENTS.
I WOULD LIKE RESEARCH AND OUR
COMMUNITY WOULD BENEFIT FROM
RESEARCH THAT TELLS US WHICH
CLINICAL INTERVENTIONS TO USE
FIRST.
WE HAVE RESEARCH BROADLY ON
WHICH INTERVENTIONS ARE
EFFICIENT BUT STILL DON'T HAVE
THEM TARGETED OR I'M ASSESSING
YOUR PROFILE AND KNOW IF WE
START HERE WE'LL GET THERE
QUICKER.
WE'RE MISSING THE ABILITY OF THE
RECORDS TO BE INTEGRATED BETWEEN
HEALTH SYSTEMS.
THERE'S NOT LYMPHEDEMA THERAPIST
IN EVERY HEALTH SYSTEM BASED ON
THE BARRIERS AND WE NEED TO
QUICKLY UNDERSTAND WHAT PATIENTS
HAVE BEEN GOING THROUGH AND WHAT
THEY'VE HAD.
AS WE THINK ABOUT THE USE OF
GRANT MONEY FOR CLINICAL AND
OUTCOMES BASED RESEARCH THAT
FUNDS RESEARCH THAT WILL
DIRECTLY IMPROVE PATIENT'S
LIVES, HOW FUNCTIONAL ARE
PATIENTS IN COMPRESSION
GARMENTS, WHICH SHOULD I TRY
FIRST BEFORE I HAVE TO GO
THROUGH ABCD WHICH IS MOST
HELPFUL FOR PATIENTS ARE MY TOP
THREE WISHES TO WHY IMPROVE THE
LIVES OF CLINICIANS AND
PATIENTS.
AND I'M GOING TO TURN IT OVER TO
MY COLLEAGUE, DAVID
DOUBBLESTEIN.
HE IS THE VICE PRESIDENT OF LANA
AND HAS MORE INFORMATION HE
WANTED TO DISCUSSION REGARDING
WHAT OUR MEMBERS OF OUR
ORGANIZATION ARE LOOKING FOR.
>> I'M THE ASSOCIATE PROFESSOR
IN THE PHYSICAL THERAPY PROGRAM
IN MESA, ARIZONA.
I'M THE VICE PRESIDENT OF THE
LYMPHOLOGY SOCCER ASSOCIATION OF
NORTH AMERICA.
I HAVE EXPERIENCE LIKE KAREN HAS
AND MY PRESENTATION SHOULD
DOVETAIL WELL ON WHAT SHE HAS
ALREADY PRESENTED TO YOU SO THE
MOST SIGNIFICANT CHALLENGES BY
PATIENTS FACING LYMPHEDEMA IS
FINDING PHYSICIANS WITH SKILL
SET TO ASSESS AND DIAGNOSIS
LYMPHEDEMA AND PROVIDE GOLD
STANDARD INTERVENTIONS FOR
LYMPHEDEMA.
TO DIG IN FURTHER, AS FAR AS THE
ASSESSMENT IN DIAGNOSING AND
FINDING PHYSICIANS AND
THERAPISTS WITH THOSE SKILL
SETS, THERE'S REALLY PART OF THE
REASON WHY THAT IS IS BECAUSE WE
HAVE A LACK OF RESEARCH AND
IMPLEMENTATION OF POORER OUTCOME
SET FOR LYMPHEDEMA.
IF YOU'RE IN THE FAMILIAR
THERE'S A STANDARDIZED
COLLECTION OF PATIENT OUTCOME
DOMAINS AND THOSE ARE ESSENTIAL
TO BE COLLECTED NOT ONLY IN THE
CLINIC BUT ALSO IN CLINICAL
TRIALS FOR LYMPHEDEMA.
WHAT THAT DOES IS BRINGS A
STANDARDIZATION OF LANGUAGE
ACROSS INTERDISCIPLINARY FIELD
OR INTERDISCIPLINARY
PRACTITIONERS.
THE OTHER THING A CORE OUTCOME
SET CAN DO IS ASSIST IN
EXAMINATION OF A DISORDER AND
UNDERSTANDING THE COMORBIDITIES.
OTHER THING THE CORE OUTCOME
DOES IS PROVIDED INTERVENTION
EFFICACY SO WE KNOW THE
INTERVENTIONS ARE EFFICIENT AND
EFFECTIVE IN SAYING WHAT THEY'LL
DO AND REDUCING SELECTIVE
REPORTING WE DO IN OUR
ELECTRONIC MEDICAL RECORDS AND
VARIABILITY IN THE REPORTING WE
SEE OFTEN TIMES IN
INTERDISCIPLINARY HEALTH CARE
FIELDS.
WE WANT TO MAKE SURE THERE'S A
CONSISTENCY.
IN DOING SO WE CAN HAVE THIS
RESEARCH DATABASE WHERE WE ALL
ARE SPEAKING THE SAME LANGUAGE
BECAUSE THERE'S SO MANY PEOPLE
THAT DIAGNOSE AND TREAT AND
INTERVENE IN LYMPHEDEMA.
SO MANY FIELDS THAT DO THAT AND
IF WE HAVE ONE UNIFIED CORE
OUTCOME SET IT WOULD BE HELPFUL
FOR US ALL.
IN ADDITION WHEN WE THINK ABOUT
THE OUTCOME SET WE HAVE LIMITED
ACCESS TO A CORSET OF OUTCOME
MEASURES ACROSS THE CONTINUUM OF
CARE.
THOSE ARE THE INSTRUMENTS THAT
MEASURE THE CORE OUTCOME SET.
AND WITH PROVIDING A SET OF
LYMPHEDEMA THERE'S A RANGE OF
DEPTH FROM 30 MINUTES TO THREE
HOURS.
WE DON'T HAVE A GOOD
CREDENTIALING FOR PEOPLE WHEN
CALL THEMSELVES LYMPHOLOGISTS WE
CAN USE SOMETHING LIKE THAT SO
PATIENTS CAN FIND ONE.
THERE'S ALSO A LACK OF SUPPORT
OR INTERESTING IN BECOMING A
CERTIFIED LYMPHEDEMA THERAPIST
AND PART IS FINANCIAL
RESTRICTIONS.
AND FINDING THERAPISTS THAT
PROVIDE GOLD STANDARD
INTERVENTIONS OF LYMPHEDEMA.
THERE'S MORE RECENT RESEARCH
DRAWING US AWAY FROM THE
MULTILAYERING EXERCISE AND
INTERVENTIONS AND GOING BACK TO
GARMENTS AND EXPRESSION AND
EXPRESSION ALTERNATIVES.
SO WE NEED TO BE CAREFUL WITH
THAT AS WELL AS REIMBURSEMENT
MODELS PREVENTING DOSAGE FOR THE
PHASE.
UNFORTUNATELY IN THE THERAPY
WHELM OF WHAT WE'RE SEEING HERE
IS THERAPISTS PROVIDING
TREATMENT ONLY MAYBE TWO DAYS A
WEEK, THREE DAYS AT THE MOST.
AND THAT'S NOT WHAT WE WOULD
CONSIDER PROPER TREATMENT FOR
LYMPHEDEMA DURING THE INTENSIVE
PHASE.
SO WHEN WE ARE THINKING ABOUT
THE MAJOR RESOURCE CHALLENGES WE
HAVE HERE THAT OUR CONSTITUENTS
ENCOUNTER IS THE LACK OF
AFFORDABLE TECHNOLOGY FOR
CLINICS AND RURAL HEALTH CARE
SETTINGS AND PRECISION
VOLUMETRIC MEASURES AND 3-D
IMAGERY OR PEROMETRY AND THERE'S
NO MEASURES FOR FIBROSIS OR
ADIPOSITY AND AS THE ALIGN WITH
CLASSIFICATION.
WE NEED TO HAVE A GOOD
QUANTITATIVE MEASURE OF SOFT
TISSUE AND SOMETHING AFFORDABLE
FOR CLINICIANS AND OUT PATIENT
SETTINGS ESPECIALLY IN RURAL
SETTINGS.
IN ADDITION THERE'S A LACK OF
CONTENT WITH PROPER EDUCATION
AND SKILL SETS AS I HAVE ALREADY
DISCUSSED PREVIOUSLY.
AND MY CONCERN IS THE ISOLATION
OF INTERDISCIPLINARY LYMPHEDEMA
SPECIALISTS.
IT MAKES THE REFERRAL PROCESS
CONFUSING AND LIMITS PROVIDERS
TO RURAL REGIONS AND TO THE
MARGINALIZED COMMUNITIES.
WE SOMEWHERE TO THINK BEYOND
WHAT WE CAN PROVIDE IN THE CITY
AND URBAN AREAS AND THINK OF
MARGINALIZED COMMUNITIES HOW TO
GET THERAPISTS OUT THERE AND HOW
CAN WE GET THE TECHNOLOGY OUT
THERE FOR PROPER SURVEILLANCE.
WITH THAT WHEN THE WHOLE
DISCUSSION STARTED, I WAS
INTERESTED IN LOOKING AT THE
NCLD AS FAR AS WHO WAS SITTING
ON THE COMMITTEE AND I DIDN'T
RECOGNIZE PEOPLE ON THE
COMMITTEE AND WHEN WE THINK OF
LYMPHEDEMA SPECIALISTS I THINK
IT'S IMPORTANT WE'RE ALWAYS
WORKING TOGETHER.
GETTING R.N.s AND P.T.s AND
O.T.s TO HAVE A UNIFIED FRONT
FOR LYMPHEDEMA DIAGNOSIS,
TREATMENT AND RESEARCH.
SO OUR TOP THREE WISHES TO
IMPROVE THE LIVES OF PEOPLE WITH
LYMPHEDEMA.
GRANT FUNDING FOR BIO IMPEDENCE
OR TDC IN RURAL SETTINGS AND
MARGINALIZED COMMUNITIES AND
SCHOLARSHIPS FOR THOSE WHO HAVE
AN INTEREST IN TREATING
LYMPHEDEMA FOR CLT COURSES IN
LANA CERTIFICATION AND SMALL
RESEARCH GRANTS FOR LYMPHEDEMA
RESEARCH AND WE NEED TO MAKE
SURE WE HAVE A LYMPHATIC
DISEASES DATA SET AND THERE'S
THERE'S A PAGE BUT I'M NOT
FAMILIAR WITH HOW TO GET THE
DATA SET INFORMATION AND SO AND
THERE ARE SOME GRANTS OUT THERE
BUT THEY'RE VERY LARGE GRANTS
AND DIFFICULT TO -- THEY'RE VERY
COMPETITIVE.
SOMETHING SMALLER THAT CAN HELP
SOME OF THE CLD'S TO PROVIDE THE
BOOTS ON THE GROUND RESEARCH I
THINK WOULD BE VERY HELPFUL.
I APPRECIATE THE INVITE TODAY
AND I HOPE THAT OUR PRESENTATION
FROM LANA HAS BEEN INSIGHTFUL
FOR EVERYONE HERE.
THANK YOU SO MUCH.
>> THANK YOU, DAVID.
THANK YOU TO KAREN TOO.
THIS WAS GREAT AND WE'LL HAVE
MORE TIME TO DISCUSS AT THE END.
SO I'M GOING TO PRESENT OUR NEXT
PRESENTER, SHEYANNE BRINSON.
>> THANK YOU.
THANK YOU VERY MUCH TO THE NIH
FOR ALLOWING US TO BE HERE
TODAY.
FDRS IS DEDICATED TO I AM
IMPROVING THE QUALITY OF LIFE
FOR ALL PEOPLE AFFECTED BY
ADIPOSE TISSUE DISORDERS BY
SUPPORTING RESEARCH, EDUCATION,
ADVOCACY AND COLLABORATION AND
WE'RE A GRASSROOTS ORGANIZATION
FOUNDED IN 2009.
AS OUR NAME INDICATED, FAT
DISORDERS RESEARCH SOCIETY WHEN
WE WERE FOUNDED, LYMPHEDEMA WERE
CONSIDERED FAT DISORDERS AND
HAVE GONE TO FAT DISORDERS TO
ADIPOSE TISSUE DISORDER AND OUR
NAME STILL REPRESENTS THE
ADIPOSE IS A FAT DISORDER.
AS I MENTIONED, FDRS WE'RE
DEDICATED TO IMPROVING THE
QUALITY OF LIFE FOR ALL ADIPOSE
TISSUE OR FAT DISORDERS
INCLUDING LYMPHEDEMA, THESE
DISEASES.
WHEN WE LOOK AT OUR CONSTITUENTS
AND WHO WE ARE REPRESENTING,
WHAT ARE OUR CHALLENGES?
WE FIND THE SIGNIFICANT
CHALLENGES FOR PATIENTS WITH
THESE CONDITIONS FIRST STARTS
WITH EARLY DIAGNOSIS.
EARLY DIAGNOSIS CAN BE VERY
HELPFUL, OBVIOUSLY, FOR PATIENTS
AND ALSO PIGGYBACKING ON WHAT
LANA WAS TALKING ABOUT WAS LOCAL
CARE OPTIONS FOR DIAGNOSIS AND
TREATMENT NOT JUST PATIENTS IN
URBAN AREAS BUT ALSO IN THE
RURAL AND UNDER SERVED AREAS.
THAT INCLUDES BOTH NON SURGICAL
AND SURGICAL OPTIONS.
MANY PATIENTS GO EITHER WITHOUT
DIAGNOSIS AND/OR TREATMENT
BECAUSE THERE'S NOT ANYONE IN
THEIR LOCAL COMMUNITY WHO IS
EVEN FAMILIAR WITH LYMPHEDEMA
AND QUAR OPTIONS -- CARE OPTIONS
AND TREATMENT.
COVERAGE WILL COVER FOR A
PATIENT TO GO SEE A PHYSICIAN OR
A NURSE PRACTITIONER OR P.A. OR
THERAPIST.
AS LONG AS IT'S A MEDICAL
CONDITION AND THEY'RE SEEING A
MEDICAL PROVIDER, THAT IS GOING
TO BE COVERED UNDER INSURANCE.
HOWEVER MANY TREATMENTS FOR
LYMPHEDEMA THERE'S SOME OF THE
NON-SURGICAL TREATMENTS ARE NOT
COVERED AND LUCKILY WE NOW HAVE
ACCESS TO COMPRESSION THAT IS
COVEREDS BECAUSE MEDICARE
COVERS IT BUT NOT ALL COVER IT.
AND WE'RE LOOKING AT MIGRATION
PLATES NOT COVERED BY INSURANCE
AND DEPENDING ON SOMEONE'S
ACCESS THAT MAY OR MAY NOT BE
COVERED DEPENDING ON THE
PROVIDER BECAUSE NOT ALL
PROVIDERS ARE PHYSICAL OR
OCCUPATIONAL THERAPISTS.
THE OTHER AREA IS COVERAGE FOR
SURGICAL TREATMENTS.
THOUGH A LOT OF HEADWAY HAS BEEN
MADE IN THE PAST 10 YEARS,
THERE'S A NUMBER OF PATIENTS
STRUGGLING TO GET COVERAGE FOR
SURGICAL INTERVENTIONS INCLUDING
LYMPHEDEMA REMOVAL SURGERY OR
REDUCTIONS.
WHEN WE DO HAVE THE INSURANCE
COVERAGE WE'RE ALSO LOOKING FOR
FAIR REIMBURSEMENT FOR THE
PROVIDERS PROVIDERI II IING --
PROVIDING IT.
MANY DO NOT PARTICIPATE BECAUSE
OF THE REIMBURSEMENT ASSOCIATED
WITH IT.
MANY PATIENTS WHO HAVE TO
TRAVEL.
EARLY ON MANY PATIENTS WERE
GOING TO GERMANY AND OTHER
EUROPEAN COUNTRIES TO RECEIVE
SURGICAL TREATMENT.
THERE'S STILL A NUMBER OF
PATIENTS IS THAT STILL ELECT TO
DO THAT.
WE'VE HAD U.S. BASED SURGEONS
PERFORMING INTERVENTIONS BUT THE
NUMBER DOES NOT MEET THE NEED OF
THE PATIENTS THAT REQUIRE IT.
AND THE TWO THINGS PROHIBITIVE
ARE LACK OF INSURANCE COVERAGE
AND/OR TRANSPORTATION.
SO PEOPLE ROUTINELY TRAVELLING
OUT OF STATE FOR CARE.
I DON'T WANT TO GO UNDER STATED
IS COMPASSION AND UNDERSTANDING.
WHETHER IT'S FOR THEIR CONDITION
FROM THEIR FAMILY AND LOVED ONES
AND COMPASSION AND UNDERSTANDING
FROM PROVIDERS, MEDICAL
PROVIDERS THAT THEY ARE ARE
SEEKING OUT FOR CARE.
OUR MAJOR RESOURCE CHALLENGES
INCLUDE AS MENTIONED BEFORE ARE
THE INSURANCE COVERAGE FOR
NON-SURGICAL TREATMENTS,
COMPRESSION, VIBRATION PLATES,
SUPPLEMENTS, MLD, ETCETERA.
THOUGH SOME CAN BE COVERED BY
PRIVATE INSURANCE SOME HAVE
GOVERNMENT FUNDING WHETHER
THROUGH MEDICARE AND/OR MEDICAID
AND MEDICAID AT THE STATE LEVEL
IN MANY CASES DOES NOT COVER A
LOT OF THE TREATMENTS THAT PLAY
BE AVAILABLE TO SOMEONE WHO HAS
PRIVATE INSURANCE.
WHETHER REIMBURSEMENT AS IT
RELATES FOR SURGICAL TREATMENT
BUT THAT GOES ALONG WITH ALL THE
TREATMENTS TO ALLOW TO MAKE SURE
THAT THE PEOPLE PROVIDING THE
SERVICES ARE BEING REIMBURSED
FAIRLY.
MUCH OF THE TREATMENTS AVAILABLE
TO US INCLUDE CENTERED AROUND
PATIENT SELF-CARE AND USING FOOD
AS MEDICINE AND ADHERING TO A
NUTRITION PLAN THAT WILL HELP
REDUCE INFLAMMATION AND PROVIDER
NUTRIENTS PATIENTS NEED CAN BE
VERY EXPENSIVE FOR ANYONE LIVING
IN THE U.S. AS WELL AS
SPECIFICALLY FOR PEOPLE WHO HAVE
LIMITED MEANS.
THE COST OF HEALTHY FOODS
BECOMES A MAJOR RESOURCE
CHALLENGE.
ALSO TRANSPORTATION AND HOME
DUTIES TAKING CARE OF CHILDREN
AND LOVED ONES.
HAVING TO BE ABLE TO GO FOR
APPOINTMENTS THAT ARE MULTIPLE
DAYS A WEEK CAN BE A CHALLENGE
AFFORDING THE GAS IT TAKES TO
DRIVE.
ALL THESE CAN BE RESOURCE
CHALLENGES FOR PATIENTS LIVING
WITH LYMPHEDEMA.
WE'RE A NON-PROFIT ORGANIZATIONS
AND OUR ACTIVITIES HAVE BEEN
AROUND HOLDING AN ANNUAL
CONFERENCE THAT BRINGS TOGETHER
PHYSICIANS AND THERAPISTS AND
RESEARCHERS AND OTHER CLINICIANS
ALONG WITH PATIENTS.
WE FIND THIS TO BE A VERY UNIQUE
OPPORTUNITY TO BRING THE
STAKEHOLDERS TOGETHER TO LEARN
AND ADVANCE ABOUT LYMPHEDEMA AND
DISEASES.
THIS IS AN OPPORTUNITY FOR THE
CLINICIANS TO EARN CME AND FOR
PATIENTS TO COME TOGETHER AND
HAVE I SENSE OF COMMUNITY.
OUR WEBSITE HAS EVOLVED TO
PROVIDE THE EDUCATIONAL
INFORMATION AVAILABLE TO
CLINICIANS.
AND WE HAVE A YOUTUBE CHANNEL TO
RECORD THE SESSIONS THAT ALLOWS
US TO PROVIDE THE EDUCATION.
YOU BRING THAT UP BECAUSE WE
NEED MORE EDUCATION AND
PROVIDERS.
1 IT GOES TO OUR TOP THREE
WISHES HAVING LOCAL DOCTORS AND
VIRTUAL OPTIONS FOR THOSE UNABLE
TO TRAVEL OR FOR PATIENTS THAT
ARE HOMEBOUND HAVING THE OPTIONS
FOR THEM.
THE SECOND WISH FALLS UNDER
INSURANCE COVERAGE WE TALKED
ABOUT BEFORE.
THREE IS A CURE FOR LYMPHEDEMA.
EVEN BEFORE WE GET THERE WE NEED
TO HAVE MORE AND ADDITIONAL
RESEARCH FOR LYMPHEDEMA.
>> THANK YOU, THIS WAS A THOUGHT
PROVOKING DECISION AND WILL
DISCUSS IT MORE IN THE
DISCUSSION TIME.
NEXT IS HEATHER FERGUSON FOUNDER
AND EXECUTIVE DIRECTOR OFE AND
THE PATIENT REPRESENTATIVES FROM
LYMPHEDEMA TREATMENT ACT.
>> THANK YOU AND GOOD MORNING.
THANK YOU SO MUCH FOR THE
OPPORTUNITY TO BE HERE TODAY.
MY NAME IS HEATHER FERGUSON AND
I'M THE FOUNDER AND EXECUTIVE
DIRECTOR OF THE LYMPHEDEMA
ADVOCACY GROUP AND ALSO THE
MOTHER OF AN 18-YEAR-OLD SON
BORN WITH PRIMARY LYMPHEDEMA AND
HIS TWIN BROTHER, WHO DOES NOT
HAVE LYMPHEDEMA ARE PICTURED ON
THE SECOND SLIDE.
WHEN MY SON, DILLAN, WAS 7
MONTHS OLD HE WAS PRESCRIBED HIS
FIRST SET OF COMPRESSION
GARMENT.
THEY WERE DENIED AND SET ME ON
THE PATH OF BECOMING AN
ADVOCATE.
THE LYMPHEDEMA ADVOCACY GROUP IS
AN ALL-VOLUNTEER, GRASSROOTS,
PATIENT-CENTERED ORGANIZATION.
IT'S OUR GROUP WHO LED THE
NEARLY 13-YEAR EFFORT TO PASS
THE LYMPHEDEMA ACT FOR SUPPLIES.
THE COVERAGE BEGAN JANUARY 1,
THIS YEAR AND THE GROUP'S
PRIMARY FOCUS CONTINUES TO BE ON
IMPROVEMENTS TO INSURANCE
COVERAGE AND ACCESS.
DESPITE THE PROGRESS MADE
INSURANCE REMAINS THE CHALLENGE.
PATIENT HAVE NOW RECEIVING SCENT
COVERAGE THANKS TO THE
LYMPHEDEMA COVERAGE.
IN ORDER TO QUALIFY FOR COVERAGE
PATIENTS MUST HAVE A LYMPHEDEMA
DIAGNOSE AND PRESCRIPTION FOR
THE GARMENTS THEY RECEIVE.
MANY DON'T HAVE A PHYSICIAN
CAPABLE OF PROVIDING THESE
THINGS AND AN INSUFFICIENT
NUMBER OF LYMPHEDEMA THERAPISTS
MEANS PATIENTS FACE DELAYS IN
GETTING THE CARE THEY NEED OR
TRAVEL LONG DISTANCES TO ATTAIN
IT.
LASTLY, BETTER INSURANCE
COVERAGE HAS RESULTED IN ORDERS.
SINCE INSURANCE WILL ONLY
CONTINUE TO IMPROVE AND THE
PREVALENCE OF LYMPHEDEMA DUES TO
RISE DUE TO INCREASING
SURVIVORSHIP IT'S CLEAR WE HAVE
AN INEFFICIENT NUMBER OF
COMPRESSION GARMENT PROVIDERS
WHO TAKE INSURANCE AND PROVIDER
CUSTOM FIT GARMENTS.
THE THREE THINGS THAT WOULD MOST
IMPROV THE LIVES OF THOSE WE
SERVE ARE UNIVERSAL ADOPTION OF
THE MEDICARE COVERAGE RULES AND
REIMBURSEMENT RATES, AN INCREASE
IN PHYSICIAN AWARENESS AND
EDUCATION ABOUT LYMPHEDEMA AND
BETTER, EASIER AND CHEAPER
ACCESS TO CARE PUTTING TREATMENT
FOR LYMPHEDEMA ON PAR WITH THAT
FOR ANY OTHER DISEASE.
DESPITE THE PROGRESS MADE IN
INSURANCE COVERAGE AND
ELSEWHERE, THE OVER ALL
SENTIMENT FROM PATIENTS IS THEY
STILL FEEL LIKE THEY'RE TREATED
LIKE SECOND CLASS CITIZENS BY
THE HEALTH CARE SYSTEM.
TOO MANY DOCTORS ARE NOT ONLY
UNKNOWLEDGEABLE ABOUT LYMPHEDEMA
BUT SOMETIMES DISMISSIVE.
SPECIALISTS ARE FEW AND FAR
BETWEEN AND ACCESSING AND
AFFORDING CARE IS STILL FAR MORE
CHALLENGING THAN FORCE OTHER
DISEASES.
I KNOW EVERYBODY IN THE MEETING
IS WORKING TO CHANGE THESE
THINGS AND I AM VERY CONFIDENCE
TOGETHER WE WILL.
THANK YOU FOR THE OPPORTUNITY TO
BE PART OF THE TOWN HALL AND
I'LL TURN IT OVER TO OUR TWO
PATIENT REPRESENTATIVES.
SPEAKING FIRST IS FRANCI SCHWAB
AND BECKY SHARP USING SLIDE
FOUR.
THANK YOU.
>> I'M FRANCI SCHWAB.
I'M A BREAST CANCER SURVIVOR AND
LYMPHEDEMA PATIENT AND ON THE
BOARD OF THE LYMPHEDEMA ADVOCACY
GROUP AND LEAD A SUPPORT GROUP.
THERE'S A GAP IN PROFESSIONALS
AND LACK OF EDUCATION IN MED
SCHOOLS.
MY SYMPTOMS WERE ALSO DISMISSED
BY MY DOCTOR.
THE LYMPHEDEMA ADVOCACY GROUP
AND THE LYMPHEDEMA SUPPORT GROUP
BOTH FEEL STRONGLY THAT OUR
CERTIFIED THERAPISTS SHOULD BE
ABLE TO BILL AND FITTING OF
PROFESSIONAL GARMENTS.
THEY KNOW US AND ARE FAMILIAR
WITH OUR PARTICULAR LYMPHEDEMA
ISSUES.
BECAUSE THEY CAN'T, FOR EXAMPLE,
HOSPITALS IN OUR AREA LITERALLY
HAVE THERAPISTS REFER US TO THE
HOSPITAL GIFT SHOP FOR
MEASURING.
SOME FITTERS ARE HIGHLY SKILLED,
OTHERS ARE NOT.
BUT WE NEED TO ADDRESS THIS
THROUGH FUTURE RULE MAKING SO
PATIENTS HAVE THE OPTION TO BE
MEASURED AND FIT BY THOSE BEST
QUALIFIED TO DO SO.
THERE'S BE AN EXTREME SHORTAGE
OF CERTIFIED LYMPHEDEMA
THERAPISTS AS MENTIONED.
PATIENTS ARE TYPICALLY WAITING A
COUPLE MONTHS JUST FOR AN
APPOINTMENT.
REALLY ON THE NCLD STATED GOALS
WHICH I THINK OF AS CONNECTING
THE DOTS, EMPOWER LYMPHATIC
RESEARCH, CONNECT RESEARCH TO
EDUCATION THROUGH PHYSICIANS IN
MED SCHOOL AND THEN PHYSICIANS
CAN DIAGNOSIS AND EDUCATE AND
SEND PATIENTS FOR TREATMENT AND
ULTIMATELY THEN PATIENTS QUALITY
OF LIFE IMPROVES.
BUT THE HOPE IS THAT INCREASED
AWARENESS ARE, THESE OTHER TWO
BECOME CERTIFIED LYMPHEDEMA
THERAPIST.
WHAT CAN WE DO TO HELP PATIENTS
NOW IN NEED OF TREATMENT?
AND MY EXPERIENCE HAS BEEN THAT
MOST HOSPITALS ARE NOT
COMPLYING.
MY FINAL LINE IS EARLY ACCESS TO
CARE MEANS BETTER QUALITY OF
LIFE.
SO THANK YOU.
>> GOOD MORNING.
I HAVE LYMPHEDEMA IN MY RIGHT
ARM AND TRUNK SECONDARY TO
BREAST CANCER AND HAVE IT IN
BOTH LEGS SECONDARY TO
LYMPHEDEMA.
I'VE BEEN ON A LYMPHEDEMA BOARD
SINCE 2013.
I STARTED A SUPPORT GROUP IN
KNOXVILLE, TENNESSEE AND I HAVE
ATTENDED MANY LYMPHEDEMA
CONFERENCES.
OUR BIGGEST CHALLENGE OVER THE
YEARS WAS TO GET THE LTA PASSED
INTO LAW BUT WE STILL HAVE
CONTINUOUS WORK TO DO TO ENSURE
THE LAW IS ENACTED SO THAT
EVERYONE CAN BENEFIT FROM
MEDICARE OR INSURANCES PAYING
THEIR SHARE FOR COMPRESSION
GARMENTS.
ALSO HOW TO ACCESS COMPRESSION
GARMENT SUPPLIERS TO OBTAIN
GARMENTS IS A CHALLENGE.
THERE ARE MANY OTHER RESOURCE
CHALLENGES FACED BY OUR
CONSTITUENTS.
ONE IS OBTAINING A CORRECT
DIAGNOSIS OF LYMPHEDEMA
ESPECIALLY WHEN EARLY DETECTION
YIELDS MORE POSITIVE RESULTS.
VERY FEW DOCTORS ARE
KNOWLEDGEABLE ABOUT LYMPHEDEMA
AND ITS TREATMENT.
THUS THEIR SWELLING MAY BE
MISTREATED CAUSING MORE HARM.
IF THE PATIENT IS FORTUNATE
ENOUGH TO BE REFERRED TO THEY
MAY NOT BE ABLE TO AFFORD THE
CO-PAY OR HAVE ENOUGH VISITS TO
COMPLETE TREATMENT OR MONETARY
MEANS TO PAY THE 20% AFTER
MEDICARE PAYS THE 80%.
MY TOP THREE OF MANY WISHES I
FEEL WOULD MOST IMPROVE PATIENTS
WITH LYMPHEDEMA FIRST ALL
PHYSICIANS WOULD BE
KNOWLEDGEABLE ABOUT LYMPHEDEMA
ESPECIALLY PRIMARY LYMPHEDEMAS
AND KNOW WHERE TO REFER THE
PATIENT IN OBTAINING CARE.
MY SECOND WISH IS HAVING MORE
TIME WITH PATIENTS TO GIVE THEM
COMPLETE CARE AND NOT HAVE TO
CUT CORNERS IN TREATMENT.
MY THIRD WISH IS ALL AGENCIES
INVOLVED IN LYMPHEDEMA OUTCOMES
SUCH AS PAYMENTS FOR CARE,
APPROPRIATE CLT AND RESEARCH IN
LYMPHATIC RESEARCHES AND
SURGERIES FOR LYMPHEDEMA
TREATMENT, FOR EXAMPLE, ALL PLAN
TOGETHER FOR INDIVIDUAL
TREATMENT FOR LYMPHEDEMA
PATIENTS SINCE LYMPHEDEMA IS NOT
ONE DISEASE BUT MANY AND LEADS
TO THE NEED FOR DIFFERENT
TREATMENTS AND NOT FOCUS ON A
COOKIE CUTTER APPROACH TO
TREATMENT.
THANK YOU.
>> THANK YOU, ALL, THIS IS VERY
IMPORTANT TO HEAR YOUR
EXPERIENCES.
WE'RE MOVING ON TO THE NEXT
PRESENTER, KIMBERLY KARR MANAGE
OF THE CODING AND PAYMENT POLICY
AND THE AMERICAN PAVEMENT
ASSOCIATION AND NAYDZA MUHAMMAD.
>> THANK YOU.
WE'D LIKE TO THANK YOU FOR BEING
INCLUDED.
WE'RE PART OF AN ORGANIZATION
REPRESENTING THE INTEREST OF
MORE THAN 230,000 OCCUPATIONAL
THERAPISTS AND ASSISTANTS AND
STUDENTS OF OCCUPATIONAL
THERAPY.
OUR SCIENCE-DRIVEN,
EVIDENCE-BASED PRACTICE ENABLES
PEOPLE OF ALL AGES TO LIVE LIFE
TO THUR FULLEST BY PROMOTING AND
REDUCING THE EFFECTS OF ILLNESS
DURING DISABILITY.
OCCUPATIONAL THERAPY HELPS
CLIENTS MAXIMIZE PARTICIPATION
IN DAILY LIFE.
PRACTITIONERS WORK WITH PERSONS
WITH LYMPHATIC DISEASE AND PAIN
AND EDEMA AND ADDRESS SYMPTOMS,
TEACH SELF-MANAGEMENT
STRATEGIES, RECOMMEND, MEASURE
AND FIT APPROPRIATE COMPRESSION
GARMENTS TO REDUCE THE IMPACT OF
LYMPHATIC DISEASE AND MAXIMIZE
ROLES AND ROUTINES THROUGH
REHABILITATION AND TASK
MODIFICATION.
THE CLIENTS WE SERVE FACE
SEVERAL CHALLENGES.
KNOWLEDGE AMONG HEALTH CARE
PROFESSIONALS IN LYMPHATIC
DISEASE AND TREATMENT OPTIONS
IMPACT OUTCOMES.
WHEN DIAGNOSIS IS DELAYED, SO IS
INITIATING INTERVENTION.
CLIENTS REPORT A LACK OF HEALTH
CARE PROFESSIONAL AWARENESS AND
CONTRAINDICATIONS THAT
EXACERBATE THEIR SYSTEMS SUCH AS
PAIN AND EDEMA DUE TO PERFORMING
BLOOD PRESSURE TESTS.
ACCESS TO SERVICES AND TREATMENT
BY THERAPISTS AND OCCUPATIONAL
THERAPISTS AND DURABLE MEDICAL
EQUIPMENT CREATE FURTHER
CHALLENGE ESPECIALLY IN RURAL
AREAS.
WAITING LISTS FOR THERAPIST
PRESENT AND ONCE THE NEED FOR A
COMPRESSION GARMENT IS
IDENTIFIED IT CAN TAKE
SIGNIFICANT TIME FOR A PROVIDER
TO HAVE SOMEONE TO COME OUT AND
MEASURE THE CLIENT AND GET THE
GARMENT MADE AND ORDERED AND
SENT BACK TO THE CLIENT FOR USE.
VARIABLE INSURANCE COVERAGE ALSO
LEAVES CLIENTS CONFUSED ON WHAT
THEIR BENEFITS COVER AND OFTEN
LEADING TO HIGH OUT OF COST.
LYMPHEDEMA ACT IMPROVED FOR
BENEFICIARIES BUT THERE'S LOW
RATES OF VENDERS WILLING TO TAKE
A MEDICARE PATIENT AND OFTEN
DOES NOT COVER GARMENTS CREATING
ISSUES IN HEALTH EQUITY BETWEEN
PLAYERS.
-- PAYERS.
AND IT'S IMPACT CHALLENGES
INCLUDING CERTIFIED LYMPHEDEMA
THERAPY AND OTHER RESOURCES
O.T.s CAN PROVIDE.
IN RURAL AREAS IT CAN BE
CHALLENGING TO BE CONNECTED TO A
CERTIFIED THERAPIST.
TELEHEALTH HAS BEEN CRITICAL TO
ADDRESSING ACCESS IN RURAL AREAS
BUT THE ABILITY OF PRACTITIONERS
TO DELIVER TELEHEALTH COMES TO
AN END AT THE END OF DECEMBER IF
THERE'S NOT FLEXIBILITY FOR NEXT
YEAR AND HAVE SEEN CHALLENGES
FOR PROVIDERS AND CLIENTS
UNDERSTANDING THE ROLE OF
OCCUPATIONAL THERAPY AND
CERTIFIED LYMPHEDEMA THERAPY
WHICH LIMITS REFERRAL.
THERE'S FREQUENTLY NOT ENOUGH
DURABLE FITTERS IN AREAS TO
CONDUCT THE FITTING SERVICES.
CERTIFIED THERAPISTS ARE TRAINED
AND IN THE PAST UNDER CASH PAY
PROVIDING MEASUREMENT AND
FITTING SERVICES BUT THERE'S NO
MECHANISM TO REIMBURSEMENT FOR
THE SERVICE UNDER MEDICARE.
UNDER THE NEW MEDICARE BENEFIT
THE REIMBURSEMENT FOR MEASURING
AND FITTING IS WRAPPED IN THE
GARMENT COST ITSELF MEANING THE
EQUIPMENT PROVIDER IS PAID FOR
THE MEASURING AND FITTING
SERVICE EVEN WHEN IT'S MEASURED
BY THE PRACTITIONER.
THE ONLY WAY FOR A THERAPIST TO
RECEIVE REIMBURSE MANY THE --
REIMBURSEMENT IS TO CONTRACT AND
HAVE NOT BEEN ABLE TO CONTRACT
DUE TO LOW REIMBURSEMENT RATES
UNDER MEDICARE LEAVING IT
DOESN'T LEAVE ENOUGH MONEY TO
PROVIDE ENOUGH TO PAY THE
THERAPIST AND LEAVES A WAIT TIME
OF WEEKS AND MONTHS THOUGH
THERE'S A POOL WHO CAN SUPPORT
TIMELY ACCESS.
THESE CLIENTS AND RESOURCE
CHALLENGES INFORM OUR WISH LIST
FOR LYMPHATIC DISEASE
MANAGEMENT.
THREE THINGS WOULD BE INCREASED
PROVIDER EDUCATION FOR REFERRAL
FOR SERVICES, IMPROVED COVERAGE
OF TREATMENT SERVICES AND
COMPRESSION SIZE AND GARMENT
FITTING AND WORKING ON WAYS TO
ENSURE CLIENTS GET THE GARMENTS
AND SUPPLIES TO MANAGE THEIR
DISEASE WHEN THEY NEED THEM
WITHOUT SUFFICIENT OUT OF POCKET
COSTS.
I'D LIKE TO INTRODUCE NAYDZA
MUHAMMAD A CERTIFIED O.T. AND
PERSON WITH LIVED EXPERIENCE.
>> GOOD MORNING, HELLO.
MY NAME IS NAYDZA MUHAMMAD AND A
PATIENT AND ADVOCATE.
I HAVE A SYNDROME AND LEFT LOWER
EXTREMITY DISEASE.
UNFORTUNATELY OUR CHALLENGES ARE
COMMON AND WIDESPREAD SO I'LL
MIRROR SOME OF THE CHALLENGES
FROM THE OTHER PRESENT THIS
MORNING.
AND I WAS INAPPROPRIATELY
REFERRED TO A VASCULAR DOCTOR.
SO MANY GO YEARS WITHOUT A
DIAGNOSIS AND CARE IS MISSED.
AS A CERTIFIED LYMPHEDEMA
THERAPIST I'M STILL GETTING
REFERRALS FROM DOCTOR AND NURSE
PRACTITIONERS FROM DIAGNOSIS OF
PERIPHERAL EDEMA OR EDEMA FOR
PATIENTS WHO CLEARLY HAVE
LYMPHEDEMA.
THIS NEGATIVELY IMPACTS BY
ABILITY TO ORDER COMPRESSION
GARMENTS AND INITIATE FOR
CONTINUE TREATMENT DEPENDING ON
THE INSURANCE PROVIDER DUE TO
INACCURATE OR INADEQUATE
DIAGNOSIS.
A SIGNIFICANT BARRIER TO
TREATMENT FOR BOTH MYSELF AND A
LOT OF MY PATIENTS IS LACK OF
ACCESS.
I WORK IN A RURAL AREA IN
MISSISSIPPI AND THE ONLY
CERTIFIED LYMPHEDEMA THERAPIST
WITHIN 60 PLUS MILES.
I'VE BEEN DIAGNOSED WITH
LYMPHEDEMA SINCE 2016 AND NEVER
BEEN CERTIFIED BY A THERAPIST,
NEVER OTHER THAN MYSELF.
DUE TO THE LACK OF PROVIDERS
WITHIN A REASONABLE DISTANCE OF
WHERE I LIVE.
ALONG WITH THAT BARRIER COMES
THE LACK OF QUALIFIED FITTERS
AND CUSTOM GARMENT MEASURING
PROFESSIONALS.
THIS LIMIT DOES CONCERN ME
GREATLY AND WE SHOULD FIGHT TO
FIGHT MORE RESOURCES IN PLACE
NOT FEWER.
RESOURCES LIKE OCCUPATIONAL
THERAPY TELEHEALTH AND PROVIDING
CARE TO THOSE WHO HAVE
LIMITATIONS SUCH AS LACK OF
TRANSPORTATION, DIMINISHED
MOBILITY, ETCETERA.
THE LACK OF CLTs AND HOSPITALS
AND IN THE HOME HEALTH SETTING
IS A GLARING LACK.
MY PATIENTS WHO BECOME
HOSPITALIZED DURING TREATMENT
RETURN TO ME EITHER HAVING LOST
ALL WE GAVE OR WORSE OFF AND
SOME ARE UNABLE TO TRANSPORT AND
MISS OUT OF CARE BECAUSE OF LACK
OF L.T.s IN THE HOSPITAL AND
HOME SETTING.
WHEN I HAVE BEEN HOSPITALIZED,
TWICE LAST YEAR, I WAS UNABLE TO
KEEP UP WITH MY LYMPHEDEMA
THERAPY.
AS A PRACTITIONER I WAS LOSING
GROUND AND AS A PATIENT I FELT
HELPLESS AND HOPELESS.
IN THE HOSPITAL AND HOME HEALTH
CARE SETTINGS MY PATIENTS ARE
DEPRIVED OF CARE.
MY WISH LIST AND MY WISHES ARE
DIG AND HOPEFUL.
MY FIRST WISH IS SOME NATIONAL
GOVERNING BODY OR LICENSED
PROFESSIONALS PROVIDE EDUCATION
ABOUT LYMPHEDEMA AND MAKE IT
MANDATORY TO CONTINUE IN THEIR
FIELD AND HOW TO IDENTIFY AND
CORRECTLY TREAT LYMPHEDEMA AND
LYMPHATIC DISORDERS.
ANOTHER WISH IS NEED FOR CODES
OR CODE EXPANSION AND CLTs THAT
MEASURE FOR GARMENTS CAN BE
REIMBURSED FOR THEIR TIME, SKILL
AND EFFORTS.
THIS IS NOT IN PLACE AND SEE MY
PATIENTS SUFFERING AS A RESULT
AND THE PATIENTS OF CLTs THAT I
NETWORK WITH.
MY LAST WISH IS A BIG WISH THAT
EVERYONE UTILIZE THE POWER OF
THEIR VOICE.
OUR VOICES CARRY ENORMOUS
WEIGHT.
EVERY STORY HAS AN IMPACT AND
SHARING INFORMATION IS A
POWERFUL THING.
WE OFTEN UNDERESTIMATE OUR OWN
INFLUENCE BECAUSE WE TEND TO
LOOK AT OUR SITUATION AS NOVEL
OR UNIQUE.
AND WHILE OUR SITUATIONS ARE
SPECIFIC AND UNIQUE TO US, THERE
IS AN INTERSECTION OF
EXPERIENCES.
WHEN WE SHARE AND MAKE THE
EFFORT TO EDUCATE AND INFORM
OTHERS ABOUT THESE EXPERIENCES,
THE NATURAL CONSEQUENCE OF THIS
IS INCREASED UNDERSTANDING,
EMPATHY AND ULTIMATELY
COMPASSION.
IF THIS WAS NOT TRUE THEN THE
ALL VOLUNTEER GRASSROOTS
BIPARTISAN TREATMENT OF THE
LYMPHEDEMA TREATMENT ACT WOULD
NOT EXIST.
THANK YOU FOR YOUR TIME AND
ATTENTION THIS MORNING.
>> THANK YOU, AGAIN.
I APPRECIATE THAT CALL FOR
BUILDING COMMUNITY, A LARGER
COMMUNITY.
WITH THAT I WANT TO INTRODUCE
THE NEXT SPEAKERS, JONATHAN KART
AND KASI GROSVENOR.
>> THE FLOOR IS YOURS, JONATHAN.
>> THANK YOU TO THE COMMISSION
FOR INVITING US TO SPEAK TO THE
TOWN HALL THIS MORNING.
IT'S WONDERFUL TO SEE
COLLABORATORS.
I'M THE CEO OF THE LYMPHEDEMA
FOUNDATION SORRY FOR MY VOICE
AND I'M JUST GETTING OVER BEING
UNDER THE WEATHER.
THE LYMPHEDEMA FOUNDATION WAS A
NONPROFIT SET UP IN 2015 FOR
ADDRESSING THREE PRIMARY
CHALLENGES TO DEFINING,
DIAGNOSING AND TREATING
LYMPHEDEMA.
ONE IS A LACK OF RESEARCH
FUNDING.
WE ADDRESSED THIS THROUGH
PROVIDING FUNDING.
WE DON'T REQUIRE PRELIMINARY
DATA FOR OUR FUNDING.
SO MOSTLY WHAT WE FUND IS PILOT
PROJECTS AND WE'VE SUPPORTED
OVER $12.5 MILLION IN PROJECTS
GLOBALLY IT DATE RESULTING IN
SEVERAL RO1s FROM THE NIH.
THE SECOND IS THE NASCENT STATE
OF RESEARCH AND INFRASTRUCTURE
AND NETWORKS IN THE LYMPHEDEMA
FIELD THROUGH THE PATIENT
REGISTRY THAT INCLUDES SEVERAL
THOUSAND PARTICIPANTS TO DATE AS
WELL THE TISSUE BIO REPOSITORIES
AND BIO BANKS AND CONNECT THE
NODE OF THE LYMPHEDEMA RESEARCH
NETWORK INCLUDING CLINICIANS,
RESEARCHERS AND PEOPLE WITH
LYMPHEDEMA THROUGH SCIENTIFIC
RECREATES.
THIS IS A BUSY WEEK FOR US AND
THAT'S TRUE WE'RE KICKING OFF
OUR 2024 RETREAT LATER TODAY AND
SEVERAL PROJECT WE FUNDED TO
DATE INVOLVE MULTIPLE
INSTITUTIONS AND BROAD SCALE
COLLABORATIONS.
AND THE THIRD CHALLENGE IS
RELATIVELY LOW TO THE GROWING
AWARENESS ABOUT LYMPHEDEMA.
I'VE INCLUDED A HANDFUL OF THE
RESOURCES WE CREATED TO DO THOSE
THINGS WE HAVE TOOLS AND
BROCHURES ARE POPULAR.
WE'LL SEND THEM OUT TO AS MANY
FOLKS AS POSSIBLE FOR FREE AND
ON THE EDUCATION FRONT WE DO
THINGS LIKE CREATE AND
DISSEMINATE EDUCATION MODULES AS
WELL AS EXTENSIVE AWARENESS AND
COLLATERAL COLLABORATION AND
GOOD REVIEWS.
WE WORKED WAGE RESEARCHERS AND
CLINICIANS AND SOME OF OUR
CLOSEST COLLABORATORS ARE PEOPLE
WITH LYMPHEDEMA AND ON BEHALF OF
AND IN SERVICE OF THAT
COMMUNITY.
SHEYANNE DID A GREAT JOB OF
TALKING ABOUT KEY CHALLENGES
FACING THE COMMUNITY OF PEOPLE
WITH LYMPHEDEMA.
THIS CONDITION AFFECTS MILLIONS
AND HAS SUBSTANTIAL QUALITY OF
LIFE IMPACTS.
YOU CAN SEE THEM LISTED IN THE
SECOND BULLET THERE ON THINGS
LIKE DAILY PAIN OR FLARING PAIN
FROM FOLKS AT THE LEVEL OF A 7
OF 10 ON A VISUAL ANALOG SCALE
AND FEAR OF LOSS OF MOBILITY AND
LOSS OF MOBILITY.
YOU SEE PHOTOS ON THE RIGHT SIDE
AND THE CONDITION CAN CERTAINLY
IMPACT MOBILITY AND BE
DISFIGURING AND DISABLING AND IT
CAN IMPACT FOLKS OVER THE
DECADES.
THE PEAK TIME OF ONSET IS DURING
PUBERTY AND AVERAGE AGE OF
DIAGNOSIS ISN'T UNTIL 40 AND
HAVING IMPACT OVER THE COURSE OF
THEIR LIVES.
THE COMMISSION ASKED US TO SPEAK
ABOUT RESOURCE CHALLENGES AND
TOP WISHES TO ADDRESS THOSE
CHALLENGES.
AND IN LATE 2022 WE KICKED OFF A
BROAD STAKEHOLDER COLLABORATION
TO ANSWER EXACTLY THOSE
QUESTIONS AND THOSE
CONVERSATIONS THAT ARE RETREAT
SEEDED WITH OVER 60 SHAREHOLDERS
FOR THE ROAD MAP.
WE LAUNCHED THAT IN THE --
STAKEHOLDERS FOR THE ROAD MAP
AND WE LAUNCHED THAT AND THERE'S
EXTENSIVE RECOMMENDATIONS AROUND
THE LYMPHATICS AND OVERLAP OF
LYMPHEDEMA.
WE LAUNCHED TWO FOUNDATIONAL
RESOURCES THAT ACCOMPANY THE
ROAD MAP.
ONE IS A NARRATIVE REVIEW THAT
LOOKS AT THE NATURAL HISTORY OF
PATHOLOGY AND WHAT WE KNOW ABOUT
THOSE FROM THE EXISTING PUBLIC
RESEARCH AND WE PUBLISHED AN
OPEN IDEA DATABASE THAT'S
PUBLICALLY ACCESSIBLE AND TO
WHICH ANYONE CAN CONTRIBUTE.
YOU CAN SEE ALL THOSE RESOURCES
AT THE QR CODE ON THE TOP SIDE
AND I'LL NOTE A COUPLE THINGS
THAT EMERGED FROM THE
DISCUSSIONS ON THE NEXT SLIDE.
SO THESE ARE THE SAME CHALLENGES
YOU SAW IN THE FIRST SLIDE THAT
WE'RE WORKING TO ADDRESS.
I THINK WE'RE MAKING GREAT
STRIDES AROUND ADDRESSING THESE
AND THERE'S ANY OPPORTUNITY FOR
THE NATIONAL COMMISSION ON
LYMPHATIC DISEASES AND I BROAD
RANGE OF STAKEHOLDERS FOR BIGGER
SCALE.
ON AWARENESS AND EDUCATION,
WE'VE HAD ENCOURAGING SIGNS IN
RECENT WEEKS JUST THE AMERICAN
BOARD OF OBESITY MEDICINE ADDED
QUESTIONS ABOUT LYMPHEDEMA TO
THE BOARD EXAM.
THIS IS A GREAT STEP AND
ADDRESSING THIS AT SCALE MEANS
GETTING MEDICAL PROFESSIONALS
LEARNING AS WELL ABOUT IT AS
THEY CAN.
WE NEED A MULTI-STAKEHOLDER
EFFORT TO MAKE SURE IT EXPANDS
BEYOND THE TARGETED SPECIALTIES
CARDIOLOGY AND OBESITY MEDICINE
AND TO BE IN SCHOOL AND WHERE
THEY CAN ENCOUNTER LYMPHEDEMA
AND FAMILY MEDICINE AND
OBSTETRICS AND GYNECOLOGY.
WE NEED TO DO THINGS AT GREATER
SCALE LIKE GETTING LYMPHEDEMA
REPRESENTED ON BROAD SCALE
SURVEYS AND THE FUNDAMENTAL
THINGS TO UNDER THE FLOW OF
PATIENTS AND TO DO BETTER
RESEARCH THROUGH ICD CODES FOR
LYMPHEDEMA AND REPRESENTING
LYMPHEDEMA IN AN NIH REPORTER.
FINALLY, OF COURSE DO NEED MORE
FUNDING AROUND LYMPHEDEMA.
WE ARE MAKING A LOT OF PROGRESS
AROUND BUILDING OUT THE RESEARCH
BASE.
60% OF THE PRIMARY DATA PAPERS
ON LYMPHEDEMA HAVE BEEN
PUBLISHED IN THE LAST FIVE YEARS
AND IT'S A GREAT START BUT WHAT
WE NEED ARE LARGE SCALE
MULTI-INSTITUTION COLLABORATIONS
OF THE SORT AT NIH AND DOD AND
OTHERS CAN CATALYZE.
AND I WAS VERY ENCOURAGED TO SEE
A COUPLE OF PROMISING PROPOSALS
LOOKING AT LYMPHEDEMA ARE
ADVANCING THROUGH THE ARPA-H
PROGRAM AND NEED MORE OF THAT TO
TAKE IT TO THE NEXT LEVEL.
WITH THAT I'D LOVE TO TURN IT
OVER TO MY COLLEAGUE, KASI
GROSVENOR AND CAN SHARE HER
EXPERIENCE WITH LYMPHEDEMA.
>> GOOD MORNING AND THANK YOU
FOR THE INVITATION TO THE
COMMISSION.
I'VE BEEN LISTENING ON THESE
SINCE THE INCEPTION EARLIER THIS
YEAR AND JUST WANT TO COMMEND
THE COMMISSION FOR PRIORITIZING
THE PATIENT PERSPECTIVE AND IT'S
VALIDATING FOR PATIENTS TO SEE
THE WORK HAPPENING.
I WANT TO MENTION NIH HAS BEEN
DEE
DEEPLY INSTRUMENTAL IN MY FAMILY
AND EXTENDED FAMILY IN THE LAST
DECADE AND HAVE A LOT OF HOPE
WATCHING WHAT WILL IMPACT MY OWN
LIFE AND THE LIFE OF MY KIDS AND
THE MILLIONS OF OTHER WOMEN
LIVING WITH LYMPHEDEMA AMONGST
OTHER LYMPHATIC DISORDERS.
I'M 43-YEAR-OLD PATIENT AND
SIMILAR TO THE TIME LINE
JONATHAN MENTIONED EARLIER.
I STARTED REPORTING SYMPTOMS OF
LYMPHEDEMA FROM PROBABLY EVEN
PREPUBERTY AND CERTAINLY AT THE
TIME OF PUBERTY.
VISIBLE DISPROPORTION WAS ONE OF
THE THINGS THAT WAS EASILY SEEN
IN PICTURES BUT PAIN AND
BRUISING AND OTHER CHALLENGING
SYMPTOMS WERE PROGRESSING OVER
MY TEEN AGE YEARS THROUGH
PREGNANCIES AND INTO MY 30s.
AT THE LATE 30s I WAS LISTED
WITH HAVING SEVERE LIMITATIONS,
DRAMATICALLY IMPACTING MY
MOBILITY, STRENGTH, ENDURANCE
AND QUALITY OF LIFE AND IT TRULY
WAS IMPACTING MY ABILITY TO
FUNCTION.
I DID NOT RECEIVE A DIAGNOSIS
UNTIL I FOUND A LYMPHEDEMA
FOUNDATION BROCHURE AND THAT'S
WHY THE FOCUS ON PATIENT TOOLS
IS ONE OF THE VERY CRITICAL
COMPONENTS.
I HAVE PAID ATTENTION
PARTICULARLY TO THIS WORKFORCE
STREAM.
IF I HAD NOT KNOWN ABOUT A
PAMPHLET A FAMILY MEMBER FOUND
AT A DIFFERENT MEDICAL
CONFERENCE, I WOULD HAVE NEVER
KNOWN TO GO DOWN THE PATH OF
GETTING A DIAGNOSIS AND AS
SEVERAL OF YOUR OTHER SPEAKERS
HAVE MENTIONED, IT TOOK MANY
MONTHS OF A WAIT LIST TO EVEN
GET INTO A CERTIFIED LYMPHEDEMA
THERAPIST.
BECAUSE OF THAT, ONCE I GOT IN
AND KNEW WHAT THE DIAGNOSIS WAS
I CONSIDERED MYSELF ONE OF THE
LUCKY ONES BECAUSE I DID HAVE
GOOD INSURANCE THAT QUICKLY
COVERED COMPRESSION GARMENTS AND
SOME OF THOSE THINGS.
AND I KNOW THAT NOT ALL PATIENTS
HAVE ACCESS TO THOSE THINGS AND
THOSE ARE SOME OF THE CHALLENGES
THAT WE REALLY NEED TO GET TO.
I HAVE BEEN LIVING NOW WITH
LYMPHEDEMA FOR THE LAST THREE
YEARS AND I AM CURRENTLY
MANAGING MY CONDITION WITH MORE
THAN 50 TREATMENT MODALITIES ON
EVEN GIVEN DAY OF MY LIFE
USUALLY UPWARDS OF TWO HOURS OF
CONSERVATIVE THERAPIES ACROSS A
WIDE RANGE OF THINGS.
AND THOSE TREATMENT MODALITIES
IN MANY CASES ARE NOT COVERED BY
INSURANCE.
THEY'RE PAID FOR OUT OF POCKET.
AND SO I VERY MUCH FEEL LIKE
SOME OF THE CHALLENGES THAT HAVE
BEEN MENTIONED ARE CONSISTENT TO
WHAT I AM SEEING ACROSS THE
COMMUNITY.
THE DELAY IN PROPER DIAGNOSIS IS
ONE OF THE MOST CRITICAL THINGS
AND THAT IS WHY IT IS SO
IMPORTANT FOR THIS TO BE IN ALL
MEDICAL SCHOOL ONBOARD AND CMs
AND THOSE LIKELY TO SEE THIS.
THE ONES THAT COME TO MIND ARE
PEDIATRICS AND OB-GYN.
WE NEED THOSE DOCTORS
RECOGNIZING THIS AND GETTING ON
TO THAT EARLIER.
WE ALSO NEED ACCESS TO BETTER
TOOLS.
I MENTIONED THE PAMPHLET FROM
WHICH LED TO MY DIAGNOSIS BUT
THERE'S A NUMBER OF OTHER TOOLS
THAT CLINICIANS ARE ALL EXCITED
TO RECEIVE AND VIEW SUCH AS THE
CLINICIANS GUIDE AS MENTIONED.
WE NEED FOR THOSE RESOURCE TO
EXIST BECAUSE IN THEIR ABSENCE
PEOPLE GET THEIR MEDICAL ADVICE
FROM TIKTOK WHICH CAN BE A VERY
USEFUL WAY IT GET INFORMATION
BUT IT'S NOT GETTING INTO THE
HANDS OF WHO WE NEED TO GET IT
IN.
AND SO TO WRAP UP WITH THREE
WISHES THAT I WOULD SAY,
INFLUENCING THAT INCLUSION INTO
ALL MEDICAL SCHOOL AGENDA WOULD
BE ONE OF MY BIGGEST WISH LISTS.
THE SECOND IS FOR RESEARCH MORE
THE TREATMENT MODALITIES WE NEED
TO SEE AT LARGE SCALE.
WE NEED TO SEE IT TESTED AND I
WOULD LIKE TO SEE MORE RESEARCH
ON THAT AND THEN FUNDING FOR
RESEARCH.
DEVELOP SOME BIOMARKER OR WAY TO
DIAGNOSIS SO PHYSICIANS FEEL
CONFIDENT.
I WILL WRAP UP WITH SAYING THANK
YOU SO MUCH FOR CONTINUING TO
FOCUS ON LYMPHATIC DISORDERS AND
FOR INCORPORATING PATIENTS INTO
ALL THE WORK THAT YOU'RE DOING.
AND I PROMISE YOU IT MATTERS TO
ME AND IT MATTERS TO A LOT OF
OTHERS.
SO, CERTAINLY MY DEEPEST
APPRECIATION FOR THIS COUNCIL.
THANK YOU.
>> THANK YOU.
AND IN THE INTEREST OF TIME
LET'S MOVE QUICKLY TO THE NEXT
SPEAKER, GUENTER KLOSE THE
CERTIFIED INSTRUCTOR OF KLOSE
TRAINING AROUND JOINED WITH
LINDA HODGKIN'S A LYMPHEDEMA
TEAM LEADER AT HARTFORD CENTER
AND OUR PATIENT REPRESENTATIVE.
>> GOOD MORNING, EVERYONE.
MY NAME IS GUENTER KLOSE.
I'VE BEEN A CERTIFIED LYMPHEDEMA
THERAPIST FOR 40 YEARS.
I PROVIDE THE HIGHEST QUALITY OF
THERAPY AVAILABLE.
THE BIGGEST CHALLENGE THERAPISTS
FACE TODAY IS THE LACK OF
ADEQUATE REIMBURSEMENT.
CURRENT REIMBURSEMENT RATES DO
NOT REFLECT THE TIME SPENT WITH
PATIENTS WITH LYMPHEDEMA.
LYMPHEDEMA THERAPY IS MUCH MORE
THAN MANUAL LYMPHATIC DRAINAGE
AND BANDAGING.
THE CORE COMPONENTS ARE MANUAL
TECHNIQUES INCLUDING MANUAL
LYMPHATIC DRAINAGE, COMPRESSION
BAND AND BRANDING AND HOME
EXERCISE PROGRAM AND PROVIDING
INSTRUCTIONS IN SELF-CARE.
IT TAKES A HIGHLY MOTIVATE AND
SKILLED THERAPIST TO PROVIDER
COMPREHENSIVE DECONGESTIVE
THERAPY.
BECAUSE OF INSUFFICIENT
REIMBURSEMENT TREATMENT TIMES
ARE BEING CUT SHORTER AND
SHORTER.
IT IS IMPOSSIBLE TO PROVIDE
EFFECTIVE LYMPHEDEMA CARE TO
PATIENTS LIKE THESE IN 30, 40 OR
EVEN 60 MINUTES.
IT LEAVES PATIENTS WITH
INADEQUATE OUTCOMES WHO CARRY
OVER AND PRONE TO RELAPSES AND
HOSPITALIZATION.
CURRENT REIMBURSEMENT DOES NOT
RECOGNIZE THE ADDITIONAL SKILL
LEVEL THAT HAS TO BE ACQUIRED BY
THERAPISTS BEFORE PROVIDING
EFFECTIVE LYMPHEDEMA CARE.
ADDITIONALLY, THERE'S NO
REIMBURSEMENT FOR THE FITTING OF
EXPRESSION GARMENTS.
THE AMOUNT OF TIME SPENT
COMPLETING THE NECESSARY
PAPERWORK HAS UNREASONABLY
INCREASED SINCE THE PASSING OF
THE LYMPHEDEMA TREATMENT ACT.
IT'S IRONIC WHILE LYMPHEDEMA IS
MORE GETS MORE TREATMENT WAITING
TIME IS GETTING LONGER AND
NUMBER OF THERAPIST DECREASING
BECAUSE OF UNREASONABLE
PRODUCTIVITY PRESSURE AND
WORKING CONDITIONS.
WE DO RECOGNIZE THAT FEWER
SECONDARY BREAST CANCER RELATED
LYMPHEDEMA IS DECLINING,
HOWEVER, THE NUMBER OF OBESITY
ASSOCIATED AND ORTHOPEDIC
RELATED EDEMAS AND LYMPHEDEMAS
ARE INCREASING.
HOW WILL WE FACE THIS PROBLEM IN
THE FUTURE WITHOUT A SUFFICIENT
NUMBER OF PROVIDERS?
MY THREE WISHES IS NUMBER ONE,
SUFFICIENT REIMBURSEMENT FOR THE
SKILLS WORK AND TIME REQUIRED TO
PROVIDER BEST PRACTICE
LYMPHEDEMA CARE.
A CODE FOR REIMBURSEMENT THERAPY
AND ADEQUATE REIMBURSEMENT FOR
COMPRESSION GARMENT AMERICA AND
FITTING.
CARE IS ALREADY LIMITED.
WITHOUT CHANGES, PATIENTS WILL
LOSE ACCESS TO QUALITY
LYMPHEDEMA CARE AND EXPERIENCE
SERIOUS COMPLICATIONS AND
HOSPITALIZATIONS.
THANK YOU SO MUCH FOR YOUR
ATTENTION AND I WILL HAND IT
OVER TO LINDA HODGKIN'S.
-- HODGKINS.
>> HELLO.
I'M AN OCCUPATIONAL THERAPIST
WITH OVER 27 YEARS OF TREATING
INCLUSIVELY PATIENTS WITH
LYMPHEDEMA BOTH AS A PRIVATE
PACTS OWNER AND MANAGER OF 45
CERTIFIED LYMPHEDEMA THERAPISTS
ACROSS OUT PATIENT AND SUBACUTE
SYMPTOMS.
I'M HERE TO LOOK AT
UNPRECEDENTED CHALLENGES AT OUR
PROFESSIONAL.
I WANT TO VALIDATE THE
ASSESSMENT OF BARRIERS.
WE MEET DEMANDS OF PROVIDING CDT
YET A MULTI-FACETED SET OF
ISSUES LED TO DECLINE IN BEST
PRACTICE TREATMENTS AND PATIENT
OUTCOMES.
LOW REIMBURSEMENT RATES,
RESTRICTIVE INSURANCE CAPS AND
PRODUCTIVITY DEMANDS HAVE ERODED
TREATMENT TIMES AND LEFT LITTLE
CAPACITY FOR CLT'S TO DELIVER
CDT AS INTENDED.
THIS RESULTS IN A TREATMENT AND
COMPROMISED OUTCOME FOR PATIENTS
WHO MISS OUT ON CRITICAL
COMPONENTS OF CDT.
A SIGNIFICANT PART OF THIS
CRISIS STEMS FROM A PERVASIVE
LACK OF CDT AMONG SYSTEMS AND
INSURANCE PROVIDERS.
PERPETUATING A CYCLE OF CARE.
WITHOUT EFFECTIVE MANDATES
THERE'S NO ACCOUNTABILITY TO
PROTECT PATIENTS FROM
INEFFECTIVE TREATMENT THAT FALL
SHORT OF BEST PRACTICE.
THIS GAP ENDANGERS PATIENTS AND
DIMINISHES THE VALUE OF OUR
SPECIALIZED CARE.
THE RECENT PASSAGE BROUGHT MUCH
NEEDED HOPE TO OUR FIELD.
HOWEVER, IT'S IMPLEMENTATION HAS
UNEXPECTEDLY ADDED NEW
ADMINISTRATIVE BURDENS FOR
PATIENTS IN CLTs NOW TRYING TO
NAVIGATE THE COMPLEX
COMPLEXITIES OF GETTING
GARMENTS.
THIS ADMINISTRATIVE TOLL HAS
TAKEN AN IMMENSE STRAIN AND
CONTRIBUTING TO AN ALARMING RATE
OF RESIGNATION.
WITH EACH DEPARTURE THE BARRIER
TO ACCESS QUALITY CARE ONLY
GROWS.
YET I'M DEEPLY HOPEFUL ABOUT THE
POTENTIAL ROLE CLTs CAN PLAY IN
TRANSFORMING HEALTH CARE AND
OUTCOMES BEYOND TRADITIONAL
LYMPHEDEMA.
THEY COULD BE KEY PLAYERS IN OUR
MEDICAL SYSTEM AND EFFORTS TO
REDUCE INFLECTION AND WOUND
COMPLICATIONSED AND
RE-HOSPITALIZATIONS BY APPLYING
COMPONENTS OF CDT TO A BROADER
RANGE OF PATIENTS WITH EDEMA
CONDITIONS.
ACUTE CARE OUR TEAM IS SEEING
THE IMPACT OF THIS WORK.
OUR TEAM IS COLLECTING DATA
DEMONSTRATING INTERVENTIONS
REDUCE 30 DAY HOSPITALIZATIONS
FOR PATIENTS WITH DIAGNOSES SUCH
AS CELLULITIS AND ORTHOPEDIC
TRAUMA AND POST-SURGICAL EDEMA.
WITH STRATEGIC SUPPORT THEY CAN
SERVE THE ACUTE CARE TEAM
REDUCING COMPLICATIONS AND
ENHANCING RECOVERY FOR PATIENTS
WITH EDEMA-RELATED NEEDS.
THIS VISION FOR OUR PROFESSION
HOWEVER, IS UNDER GRAVE THREAT.
OBTAINING THE CREDENTIAL IS
DESPERATELY NEEDED AS HOSPITAL
SYSTEMS HAVE DECREASED OR
ELIMINATING EDUCATIONAL FUNDING
LEAVING THERAPISTS TO COVER THE
COST AND COMMITMENT ON THEIR
OWN.
ADDITIONALLY, IMPROVED
REIMBURSEMENT STRUCTURES ARE
ESSENTIAL TO REFLECT THE VALUE
OF CDT AS A HIGHLY SKILLED
SERVICE.
TO SUSTAIN THE PROFESSION I
ADVOCATE FOR EDUCATIONAL FUNDING
FOR CLP CERTIFICATION TO
CHAMPION REIMBURSEMENT REFORMS
THAT RECOGNIZE THE IMPORTANCE OF
CDT AND ESTABLISH ACCOUNTABILITY
STANDARD TO ENSURE THE DELIVERY
OF EFFECTIVE MEANINGFUL CDT.
ONLY BY FOSTERING THE SUPPORTS
CAN WE HOPE TO REGAIN AND
REINVIGORATE THIS MOBILE
PROFESSION.
WE MUST ACT NOW TO TRAIN THE
PROFESSIONALS BEFORE THEY
ABANDON THE FIELD LEAVING
PATIENTS AND HEALTH CARE SYSTEMS
WITHOUT THEIR INDISPENSABLE
EXPERTISE.
THANK YOU.
I'LL NOW TURN IT OVER TO
YOLANDA.
>> I'M YOLANDA MARTIN A PRIMARY
LYMPHEDEMA PATIENT WITH
BILATERAL LYMPHEDEMA.
IT WAS 28 YEARS FROM THE ONSET
OF MY LYMPHEDEMA UNTIL I WAS
DIAGNOSED AND I ACTUALLY
DIAGNOSED MYSELF.
I CURRENTLY HAVE AN OUTSTANDING
LYMPHEDEMA THERAPIST WHO IS
CONSTANTLY EDUCATING AND
EMPOWERING ME.
HOWEVER, I'M VERY CONCERNED
ABOUT THE SUPPLY OF HIGHLY
QUALIFIED LYMPHEDEMA THERAPISTS
AND MY FUTURE CARE.
MY TOP THREE WISHES ARE AS
FOLLOWS, NUMBER ONE, LYMPHEDEMA
TREATMENT CENTERS ARE NEEDED TO
ENSURE MULTIPLE ASPECTS OF THE
PATIENT'S LYMPHEDEMA MANAGEMENT
ARE ADDRESSED INCLUDING BUT NOT
LIMITED TO OFFERING SERVICES
SUCH AS FITTING AND SUPPLY OF
COMPRESSION GARMENT , EDUCATION
ON SELF-CARE AND TECHNIQUES AND
SUPPORT GROUPS AND COUNSELING
SERVICES AND PROVIDING REFERRALS
TO OTHER SPECIALISTS.
NUMBER TWO, ONGOING LYMPHEDEMA
EDUCATION IS NEEDED TO ENSURE
SUCCESSFUL LONG-TERM MANAGEMENT.
THAT IS EDUCATION THAT EMPOWERS
US, THE PATIENT, TO FOCUS ON
INCREASING OUR KNOWLEDGE SKILLS
AND MOTIVATION TO ENSURE A
SUCCESSFUL OUTCOME.
AND THREE, COLLABORATION AMONG
THE PATIENT AND HEALTH CARE TEAM
TO INCLUDE DIETITIANS AND TO
PROVIDE NUTRITIONAL COUNSELLING
ON HEALTHY EATING BEHAVIORS.
DERMATOLOGISTS ON SKIN
MOISTURIZATION AND SIGNS AND
SYMPTOMS OF CELLULITIS AND
ADDRESSING BODY IMAGE CONCERNS,
TREATMENT CALLS, SOCIAL SUPPORT,
EMOTIONAL DISTRESS FROM THE
CHALLENGES WHICH CAN BE VERY
GREAT OF LIVING WITH LYMPHEDEMA
AND THE LIFE LONG MANAGEMENT
ACTIVITIES NEEDED FOR A
SUCCESSFUL OUTCOME.
SO I'D LIKE TO ASK THE TASK
FORCE TO ACT NOW TO GRANT
GUENTER'S THREE WISHES TO
ADVOCATE TREMENDOUS REQUEST AND
SUPPORT AND TO EVEN CONSIDER MY
WISHES SO THAT ME AND OTHER
LYMPHEDEMA PATIENTS WILL NOT
EXPERIENCE THE GROSSLY
DETRIMENTAL AFFECTS OF THE
HIGHLY TRAINED LYMPHEDEMA
THERAPISTS WHO CONTINUOUSLY
SHARING A WEALTH OF INFORMATION
TO ME AND OTHER LYMPHEDEMA
PATIENTS.
THANK YOU FOR THE OPPORTUNITY TO
SPEAK.
>> THANK YOU VERY MUCH, GUENTER,
LINDA AND YOLANDA.
THIS WAS VERY POWERFUL.
OUR NEXT SPEAKERS ARE WILL
REPICCI PRESIDENT AND CHIEF
EXECUTIVE OFFICER OF LEARN AND
VERONICA SENERIZ.
THE FLOOR IS YOURS.
>> THANK YOU, MUCH APPRECIATES.
I'D RATHER JUST GIVE MY TIME TO
YOLANDA AND HEAR HER.
AND THANK YOU TO THOSE LIVING
WITH LYMPHATIC DISEASE AND
FRANCI YOU WERE GREAT.
THANK YOU FOR THE NATIONAL
COMMISSION.
I RECOGNIZE WHAT AN INCREDIBLE
AMOUNT OF WORK IT IS TO BE ON
THE COMMISSION AND SELEN, YOU'VE
BEEN AN ADVOCATE FOR SO MANY
YEARS.
I CAN'T THANK YOU ENOUGH AND OUR
CO-FOUNDER AND MELISSA ALDRIDGE
NOW A CHAIR OF THE BOARD OF
DIRECTORS AND 57D 50UR --.
I JOINED THE ORGANIZATION 13
YEARS AGO AT THAT TIME I KNEW
NOTHING ABOUT LYMPHEDEMA AND
LYMPHATIC DISEASES BUT BECAME
CURIOUS HOW WAS IT POSSIBLE WE
HAD THE DISEASE LIKE LYMPHEDEMA
THAT AFFECTS UP TO 10 MILLION
GLOBALLY AND NO ONE I TALKED TO
HEARD OF IT?
IN THE YEARS THAT FOLLOW,
LYMPHEDEMA WOULD JOINED THE
CONVERSATION THANKS TO ADVOCATES
HERE TODAY.
AND AGAIN THE PROJECTION UP TO
17 MILLION WOMEN POTENTIALLY
WITH THIS DISEASE IN THE UNITED
STATES WAS AS AS -- ASTOUNDING
OF THE DISEASE.
THE MAJOR CHALLENGES FOR THOSE
LIVING WITH LYMPHATIC DISEASES
AND THEIR FAMILIES FROM MY
PERSPECTIVE IS UNDER FORMED
MEDICAL PRACTITIONERS.
SINCE LYMPHATICS HAS BEEN ALL
BUT IGNORED IN MEDICAL SCHOOLS
AND LACK OF EDUCATION.
THE LACK OF PHARMACEUTICAL
TREATMENTS.
INSURANCE ISSUES, GETTING
COVERAGE FOR THE TECHNOLOGIES
THAT DO EXIST AND THEN FOR
SURGERIES.
AND THE LACK OF PUBLIC EDUCATION
ON THESE DISEASES WHEREBY I
GUESS THE MAJORITY OF PEOPLE IN
THE UNITED STATES WITH
LYMPHEDEMA HAVE NEVER HAD A
PROPER DIAGNOSIS AND PATIENTS
FINDING MEDICAL PRACTITIONERS
WHICH IS WHY THERE'S STANDARDS
OF EXCELLENCE IN 20 COUNTRIES.
WE HAVE 70 CENTERS OF EXCELLENCE
AT THIS POINT.
IT'S OVERSEEN BY OUR COMMITTEE.
THERE'S NOT BEEN NECESSARY
IMPACTS ON THE TREATMENTS.
I TALKED TO PHARMA COMPANIES AND
WAITING FOR NIH TO CONDUCT THE
RESEARCH BEFORE THEY MAKE
INVESTMENT IN DEVELOPING DRUGS.
I BELIEVE NIH ESTIMATES THE
FUNDING TO BE $14 MILLION THIS
YEAR.
WHEREAS IN THE PAST THERE MIGHT
HAVE BEEN A NEED FOR MORE
RESEARCHERS.
WE HAVE INTERESTED RESEARCHERS
TO JOIN THE FIELD AND NOW WE
RISK LOSING THEM FOR LACK OF
FUNDING AND WOULD BENEFIT NOW
FROM MANHATTAN PROJECT APPROACH
TO FINDING NEW TREATMENT AND
CURES FOR LYMPHATIC DISEASES.
AS FAR AS THREE WISHES, NUMBER
ONE HAS BEEN SATISFIED THE
ESTABLISHMENT OF THE NATIONAL
COMMISSION FOR WHICH LED THE
CHARGE.
NUMBER TWO, A CENTER FOR
LYMPHATIC DISEASES IS
ESTABLISHED AT THE NATIONAL
INSTITUTE OF HEALTH THAT AFFECT
THE HOST OF DISEASES AND THIS
CENTER BE HANDSOMELY FUNDED FOR
TREATMENT AND CURES AT BREAKNECK
SPEED AND COLLABORATE WITH
WOMEN'S LYMPHATIC HEALTH AND A
PEER REVIEW PROGRAM INCLUDING
LYMPHEDEMA AND LYMPHATIC
DISEASES AS CATEGORIES ELIGIBLE
FOR FUNDING WHICH WE FOUGHT HARD
FOR.
LAST YEAR THEY GAVE OUT $7
BILLION IN LYMPHEDEMA AND
LYMPHATIC DISEASE GRANTS AND
COLLABORATING WITH THE CDC THAT
FUNDS EDUCATIONAL CAMPAIGN AND
WORK TOGETHER FOR MONUMENTAL
GAINS.
LASTLY, A REMINDER OF THREE
DOCUMENTS OF INTEREST YOU CAN
DOWNLOAD FROM THE LEARN WEBSITE.
THE FIRST IS GAPS IN THE FIELD
OF LYMPHATIC RESEARCH.
COMPLIED BY DOZENS OF
RESEARCHERS FROM AROUND THE
W0R8D
AND THE GRANT WITH THE CDC
AVAILABLE ON THE WEBSITE AS WELL
AND ALSO A DOCUMENT STANDARDIZED
APPROACH TO THE DIAGNOSIS AND
MANAGEMENT OF LYMPHEDEMA AND
LYMPHATIC DISEASES.
GO TO LYMPHATIC NETWORK.org ON
THE HOME PAGE AND DOWNLOAD THE
DOCUMENTS.
THANK YOU AND IT'S MY PLEASURE
TO INTRODUCE VERONICA SENERIZ
TELL YOU MORE ABOUT THE STORY OF
LIVING WITH LYMPHEDEMA AND
STORIES OF COUNTLESS OTHER AS
LEARNED PATIENT SERVICES
DIRECTOR.
OVER TO YOU.
AUTO
>> THANK YOU.
I WANT TO SHED LIGHT ON THE
CHALLENGES PATIENTS LIKE ME
FACE.
BEFORE I DIVE INTO THAT LET ME
PROVIDE BACKGROUND AND CONTEXT.
LYMPHEDEMA HAS RAN LIKE A RIVER
IN MY FAMILY SINCE 1905 AND I'M
THIRD GENERATION AND HAVE TWO
COUSINS WHO LIVE WITH IT ONE IN
CALIFORNIA AND ONE IN TEXAS AND
MY FATHER SUFFERED WITH
CELLULITIS PASSED AWAY AT 2016.
SADLY, WE WERE DIAGNOSED BY A
FREEWAY BILLBOARD IN 2008.
I STARTED A BLOG AND SOCIAL
MEDIA PLATFORM TO CREATE A
GLOBAL SPACE FOR PATIENT AND
SUPPORT AND ADVOCACY
INITIATIVES.
WHAT BEGAN AS A SMALL INITIATIVE
AND FRANKLY A HOBBY HAS NOW
EXPANDED AND REACHED PATIENTS IN
180 COUNTRIES WORLDWIDE.
OVER THE YEARS I'VE HAD THE
PRIVILEGE OF WORKING AND
VOLUNTEERING WITH COUNTLESS
PATIENT SUPPORT GROUPS, ADVOCACY
ORGANIZATIONS, NONPROFITS AND
INDUSTRY PARTNERS.
AS A PATIENT ADVOCATE I'VE HAD
THE HONOR OF SPEAKING WITH,
LISTENING TO AND SUPPORTING
THOUSANDS OF PATIENTS FROM ALL
WALKS OF LIFE, BACKGROUNDS AND
LEVELS OF DISEASE SEVERITY BOTH
IN PERSON AND ONLINE.
THROUGH THE INTERACTIONS I'VE
RECOGNIZED COMMON THREADS THAT
UNITE PATIENTS REGARDLESS OF
THEIR DIFFERENCES.
PRIMARILY LYMPHEDEMA TAKES A
COMPREHENSIVE TOLL.
IT AFFECTS US PHYSICALLY,
EMOTIONALLY AND MENTALLY AND
IMPOSES SIGNIFICANT FINANCIAL
BURDEN.
INSURANCE COVERAGE IS ABSOLUTELY
IMPERATIVE.
WE WANT TO BE SEEN AND HEARD.
NO LONGER SHALL WE BE FORCED TO
SUFFER IN SILENCE AND ENDURE THE
DISFIGUREMENT WITHOUT
RECOGNITION.
WE HAVE DAMAGED TOXIC AND
SOMETIMES FIBROTIC TISSUE IN OUR
BODIES AND PEOPLE CONTINUE TO
TELL US IT'S NO BIG DEAL.
FINDING QUALIFIED HEALTH CARE
PROVIDERS IS A CHALLENGE.
MANY PATIENTS STRUGGLE TO LOCATE
PROVIDERS TO RECOGNIZE, DIAGNOSE
AFTER FIBROSIS OR REPEATED
LIFE-THREATENING INFECTION.
AFFORDABLE AND ACCESSIBLE
TREATMENT SOLUTION ESSENTIAL.
WE NEED OPTIONS WITHIN REACH FOR
EVERYONE AFFECTED BY THE
DISEASE.
LYMPHEDEMA FLARE UPS CAN CAUSE A
WIDE RANGE OF SYMPTOMS AND
AFFECT QUALITY OF LIFE INCLUDING
EXTREME FATIGUE, INCREASED
SWELLING, INFLAMMATION, PAIN,
SKIN TIGHTNESS, SENSITIVITY TO
CHANGES IN BAROMETRIC PRESSURE
AND CHALLENGES LIKE ANXIETY AND
DEPRESSION.
SOME PATIENTS CONTEMPLATE
SUICIDE OR AMPUTATION DUE TO THE
DECREASED QUALITY OF THEIR LIVES
COMPLICATIONS OFTEN GO
UNADDRESSED.
MANY PATIENTS FACE ISSUES AND
EVEN SUBSTANCE BUT FREQUENTLY
RECEIVE LITTLE TO NO GUIDANCE
HOW TO MANAGE THESE SERIOUS
COMPLICATIONS.
TREATMENT DISPARITY PARTICULARLY
SEVERE FOR BED BOUND PATIENTS.
THE LACK OF INPATIENT TREATMENT
CENTERS ACROSS THE COUNTRY
LEAVES THESE INDIVIDUALS IN WITH
LIMITED CARE OPTIONS.
I'M BREAKING FROM MY NOTES TO
PAUSE AND REFLECT.
I RECEIVED AN E-MAIL FROM
SOMEONE I'VE BEEN WORKING WITH
SINCE MARCH OF 2023 A CAREGIVER
AND THEIR BROTHER DIED WITH
LITTLE TO NO CARE IN THE NURSING
HOME.
LANG WANDS -- LANGUAGES AND MY
STABLE WAS CONSIDERED TOO MILD
AND WHEN MY LYMPHEDEMA
PROGRESSED FOR SOMETHING AS
SIMPLE AS STEPPING OFF A FLIGHT
I WAS LATER SHUT DOWN FOR
MEDICARE FRAUD.
I'VE EXPERIENCED WHAT IT'S LIKE
TO HAVE ONLY ONE PAIR OF SHOES
THAT FIT MY SWOLLEN FEET AND
HAVE NO INSURANCE COVERAGE TO
COVER CRITICAL TREATMENTS.
I'M DEEPLY GRATEFUL FOR THE
CREATION OF THIS AND ALL OF YOU.
YOUR WORK IS CHANGING LIVES AS I
LOOK TO THE UNITED STATES FOR
INSPIRATION AND HOPE FOR THE
GROUP IN PARTICULAR.
ON BEHALF OF PATIENTS EVERYWHERE
WE THANK YOU FOR YOUR
DEDICATION.
NEW AND HAVE A GREAT DAY.
>> THANK YOU BILL AND VERONICA.
WE APPRECIATE IT.
WITH THAT WE'LL TURN TO
CATHERINE SEO AND FOUNDER AND OF
AND LISA DUERRE OF LYMPHEDEMA
SIMPLIFIED.
>> CAN YOU HEAR ME?
>> YES.
>> HI, EVERYONE.
WOW, IT'S BEEN AMAZING.
I'M CATHERINE SEO AND FOUNDER
AND CEO OF LYMPHEDEMA SIMPLIFIED
AND LYMPHEDEMA PROJECT AND HERE
WITH MY FRIEND AND COLLEAGUE,
LISA DUERRE.
>> I'M THE MANAGING DIRECTOR AND
ALSO A PATIENT.
>> AND IF YOU COULD CLICK
THROUGH.
THESE ARE OUR LYMPHEDEMA AND
OBESITY AND LYMPHATIC
DYSFUNCTION IS MY CALLING CARD.
>> AT 53 I WAS DIAGNOSED WITH
LYMPHEDEMA AFTER DECADES OF
LIVING WITH IT THROUGH PUBERTY
AND LIVING WITH LYMPHEDEMA AND
OBESITY AND THE COMORBIDITIES OF
ADHD HAVE SHOWN UP AND DIAGNOSED
IN MY WORLD AS WELL.
>> I AM A 75-YEAR-OLD AND I D
DID -- I WAS LOOKING FOR A
SOLUTION ON THE INABILITY FOR ME
TO GET A DIAGNOSIS.
SO THE LYMPHEDEMA PROJECT IS A
5013C NONPROFIT.
WE'RE DEVOTED TO INCREASING
AWARENESS AND PROVIDING
EDUCATION RESEARCH AND TREATMENT
OPTIONS FOR LYMPHEDEMA.
WE AND RAN ACROSS AN
ORGANIZATION IN NEW YORK.
>> AND AS YOU HEARD AND INSPIRED
FOR ALL THIS AND GRATEFUL TO BE
HERE, TODAY, LYMPHEDEMA IS A
FOR-PROFIT MEMBERSHIP
ORGANIZATION PROVIDING PROGRAMS
AND RESOURCES THAT FOSTER
LEARNING, CONNECTION AND WOMEN
LIVING WITH LYMPHEDEMA AND
LYMPHEDEMA RELATED DISORDERS.
YOU'LL SEE A GRAPH.
THE HOLISTIC APPROACH IN WHICH
EVERYTHING WE DO BRINGS FORWARD
SO LIVING WITH LYMPHEDEMA WE
CREATE SPACE FOR YOU TO
UNDERSTAND ALL THE IMPACTS IN
YOUR LIFE AND HOW TO SUPPORT
YOURSELF AS YOU NAVIGATE THIS
COMPLEX SITUATION.
>> AND GO AHEAD AND CLICK -- AND
IF I COULD, I'D JUMP AND DOWN
AND DANCE A JIG AND SCREAM AT
THE TOP OF MY LUNGS, THANK YOU.
A YEAR AGO I WAS APPROACHED BY
PUBLISHER IN LONDON TO WRITE A
BOOK ON LYMPHEDEMA WITH DOCTOR
STANLEY ROCKSON AS OUR CHIEF
EDITOR, DR. KEITH AND MYSELF AND
WE HAVE 21 AUTHORS WORLDWIDE
WORKING ON IT FOR ABOUT A YEAR
AND IT IS GOING TO BE PUBLISHED.
IT'S ALREADY ON AMAZON.
YOU CAN PURCHASE A PRE-ORDER AND
IT HOPEFULLY WILL FILL THE GAP
IN GIVING INFORMATION AND AT THE
LEVEL OF MEDICAL SCHOOL AND
PRACTITIONERS.
SO, GO AHEAD AND CLICK THROUGH.
WHAT I WANT TO EMPHASIZE IS
WE'RE A COMMUNITY-BASED
ORGANIZATION.
AS I SAID, I NEVER INTENDED TO
CREATE A BUSINESS BUT I DID
INTEND TO FIND PEOPLE WHO WE CAN
SUPPORT ONE ANOTHER.
IN THE SLIDE WE HAVE AUSTRALIA,
BOSTON, NORTH CAROLINA, NEW
ZEALAND, CANADA AND CALIFORNIA.
WE HAVE WOMEN INVOLVED ALL OVER
THE WORLD.
GO AHEAD AND CLICK THROUGH.
>> SO LYMPHEDEMA SIMPLIFIED WAS
FOUNDED IN 2013 AND WHAT'S GOING
TO POP UP ARE STATISTICS TO LET
YOU SEE THE REACH AND IMPACT AND
IT'S AN HONOR TO BE PART OF THIS
ORGANIZATION AND TO RECEIVE
LEARNING FROM AND WITH EACH
OTHER.
I THINK ONE OF THE HIGHLIGHTS
HERE IS THE DOCUMENTARY THAT
CATHERINE WAS THE PRODUCER OF
THE DISEASE THEY CALL FAT ALMOST
AT THE 5 MILLION VIEWERSHIP MARK
AND MANY OF US ONE THE BROCHURE
MENTIONED EARLIER ARE TWO OF
THIS MAIN RESOURCES IN THE EARLY
DAYS THAT WERE HELPING PEOPLE
UNDERSTAND, LIKE WHAT, THIS IS A
THING?
LYMPHEDEMA I'M NOT JUST OBESE
THERE'S MORE GOING ON HERE?
THE HIGHLIGHT IS THERE'S 106,000
PEOPLE THAT HAVE BEEN OUR
VIRTUAL EVENTS AND THIS INCLUDES
PATIENTS AND THEIR CLINICIANS.
IT'S A COMMUNITY HAVEN'T THAT IS
FOCUSSED ON ALL ASPECT ISES OF
TREATMENT AND CARE AND WE HAD
191 RESPONSES IN 24 HOURS WE
GAVE THEM A 24 HOUR DESIGN AND
THIS IS WHAT THEY GAVE US VERY
SIMILAR TO WHAT YOU HEARD.
THE LACK OF MEDICAL KNOWLEDGE
AND INCREASE AND LACK OF
MOBILITY AND PAIN AND DELAYED
DIAGNOSIS.
>> FROM THE STANDPOINT OF THE
RESOURCE GAP AND HEARD AS WELL
HERE IS THE INSURANCE COVERAGE
ISSUES AND THE LIMITED
RECOGNITION.
THE LACK OF ACCESS TO ALL THE
THINGS YOU TALKED ABOUT.
THE LIMITED ACCESS TO
SPECIALISTS WHICH IS VALIDATING
WHAT OUR COMMUNITY IS TELLING US
THIS AND WE ARE HEARING THIS AND
THE FINANCIAL BURDEN IS
DEFINITELY THERE AND THE HIGH
COST DISCOURAGED PROACTIVE
TREATMENT AND WORSENING
CONDITIONS OVER TIME.
>> AND THE TOP THREE WISHES,
WHICH WE SORT OF LOOK AT AS
BUILDING A BETTER FUTURE FOR
THOSE OF US WITH LYMPHATIC
DISORDERS.
AND THERE'S CENTERS OF
EXCELLENCE ALL OVER THE WORLD.
I REFER PATIENTS TO IT ALL THE
TIME.
AND THE HOLISTIC CARE TEAM.
I AM THRILLED TO BE PART OF THIS
CONVERSATION.
I THINK I USED THRILLED AT LEAST
FOUR TIMES.
BUT WHAT WE HAVE TO SHARE WITH
YOU, I BELIEVE, IS MUCH MORE
ABOUT OUR PERSONAL STORIES.
AND LIE -- LISA CAME UP AND
TURNED AROUND AND SAYING HOW CAN
I HELP EVERYONE ELSE.
AND HER LEADERSHIP AS A
DEVELOPMENT PROFESSIONAL IN HIGH
TECH HAS BROUGHT TO US SO MUCH.
SO, I WOULD LIKE TO SAY NEXT
SLIDE AND WILL TAKE A MINUTE AND
SHARE AND IT'S NOT PARTICULARLY
ON THE AGENDA BUT NEEDS TO BE
SPOKEN WHICH IS CENTRAL
LYMPHATIC DYSFUNCTION.
AND IT'S NOT UNCOMMON TO WALK
OFF A PLANE AND SAY SOMETHING'S
DIFFERENT.
THIS IS WAY MORE THAN THAT.
WHAT HAPPENED I WENT TO A
CONFERENCE ON THE WAY BACK FROM
THE CONFERENCE MY BODY LITERALLY
BLEW UP.
MY FACE DOUBLED IN SIZE AND
COULDN'T BREATHE.
SOME SYMPTOMS I HAD WERE SUCH
WHEN I GOT OFF THE PLANE I WAS
TAKEN TO THE EMERGENCY ROOM AND
COULDN'T BREATHE AND I WOULD SAY
THERE'S SOMETHING GOING ON WITH
MY LYMPHATIC SYSTEM AND SEND ME
FOR ANOTHER RULE OUT.
EVERYTHING.
130 TESTS LATER, THANK GOD I
FOUND DR. MAX ITKIN AND I HAVE
TO SAY I'M HERE AND STILL
KICKING AND PROBABLY GOING TO
SEE MY 76th BIRTHDAY.
JUST HAVING A LYMPHATIC DISORDER
IS BEING IN THE MIDST OF A
FIGHT.
I'M SO HAPPY TO SHARE LISA WITH
YOU.
>> IT'S LIKE WALKING THROUGH THE
FIRE AND I'M INSPIRED BY WHAT'S
BEEN SAID AND THOUGHT I'D TAKE A
BRIEF MOMENT.
WHAT I FIRST FIGURED OUT ABOUT
LYMPHEDEMA I'VE SEEN PICTURES OF
ARMS AND LEGS AND WHAT WAS
MISSING FOR ME WAS THE PATIENT
EXPERIENCE.
I'M GOING TO SHARE WITH YOU MY
QUICK JOURNEY.
BASICALLY I WAS NOT ABLE TO WALK
AND AT 53 I WAS RIDING THIS
SCOOTER HELPING MY DAUGHTER BACK
IT SCHOOL SHOP TO BE PRESENT AND
YOU DON'T SEE THE LIFE TIME OF
NOT UNDERSTANDING THE
DISFIGUREMENT AND IN ONE YEAR I
GAINED OVER 100 POUNDS AND
COULDN'T FIGURE OUT WHAT WAS
WRONG.
IT TOOK ME SIX YEARS TO BECOME
PREGNANT AND HAVE A HEALTHY
DELIVERY OF MY DAUGHTER AND WENT
THROUGH IVF AND I STARTED
SWELLING UNCONTROLLABLY IN THE
DELIVERY ROOM AND THAT'S WHEN I
STARTED SEEING THE FLARES AND
EXACERBATION A DIAGNOSIS.
I DID TAKE CARE OF MY HEALTH I
THOUGHT.
I THOUGHT I TOOK CARE OF MY
WEIGHT AFTER I GAVE BIRTH I WENT
THROUGH AN 82 WEEK MEDICALLY
SUPERVISED PROGRAM AND THOUGHT
EVERYTHING'S FINE I LOOK MORE
NORMAL.
AND I WAS WILLING TO TAKE A
PHOTO IN A BATHING SUIT AND A
PHOTO OF ME AND TOOK THE PICTURE
TO SHOW MY DAUGHTER WHAT IT WAS
LIKE TO HAVE BODY POSITIVITY.
AND ANOTHER PICTURE OF ME NOW
AND WHAT HAPPENED IS THE REASON
THIS IS COMPELLING FOR ME
VISUALLY IS YOU'LL SEE
LYMPHEDEMA NEVER DIAGNOSED OR
CAUGHT BY THE MEDICAL SYSTEM AND
SEE THE LYMPHEDEMA AND OBESITY
THROUGH MENOPAUSE ON THE OTHER
SIDE OF THE PHOTO.
IT'S BACKWARDS BEFORE AND AFTER
PHOTO.
I'LL LEAVE YOU WITH THIS,
LYMPHEDEMA CARE IS A FULL TIME
JOB AND I'M A BUSINESS OWNER AND
ADVOCATE AND FROM AN INSURANCE
STANDPOINT I DO A LOT OF MY OWN
CARE MUCH TO WHAT YOU HEAR HERE.
I GET IN THE POOL REGULARLY AND
USE A LYMPHATIC PUMP AND DRAINS
ME PHYSICALLY IT'S DRAINING
EMOTIONALLY AND HARD ON MY
FAMILY AND I'M SO GRATEFUL FOR
THIS COMMISSION BECAUSE WHAT WE
CAN DO IS MAKE A DIFFERENCE IN
OUR LIVES.
I'M GRATEFUL FOR THE TIME.
>> THANK YOU FOR ANOTHER
POWERFUL PRESENTATION.
THE NEXT PRESENTER JENNIFER
WILLIAMS.
SHE'S THE DIRECTOR AND CLINICAL
EDUCATION OF NATIONAL LYMPHEDEMA
NETWORK AND CINDY WESSELS.
>> THANK YOU FOR INVITING THE
NLM FOR HERE AND I'M A PHYSICAL
THEREAFTER EVERYONE.
THE NLN PROVIDERS EDUCATION AND
GUIDANCE REGARDING LYMPHEDEMA
MANAGEMENT BY DELIVERING
EDUCATION AND THE FIRST
ASSOCIATION IN THE
U.S. DEDICATED TO LYMPHEDEMA
AWARENESS.
OUR CONSTITUENTS FACE MANY
SIGNIFICANT CHALLENGES.
JUST TO GO OVER CHALLENGE ONE IS
THE LIMITED NUMBER OF PRACTICING
THERAPISTS AFFECTING WHERE
PATIENTS CAN FIND TREATMENT AND
THE NUMBER OF VISITS PER WEEK
THE PHYSICIANS ARE ALLOWED TO
VISIT THE ORGANIZATION PER
PATIENT TOOLS WHICH CAN AFFECT
THE DELIVERY OF CDT AND LACK OF
KNOWLEDGE BY PHYSICIANS TO
DIAGNOSE AND REFER TREATMENT.
PATIENCE WAIT MONTHS TO YEARS TO
RECEIVE A PROPER DIAGNOSIS AND
EVEN THEN NOT REFERRED IN A
TIMELY MANNER.
NEXT CHALLENGE IS HIGH INSURANCE
CO-PAYS AND DEDUCTIBLES THAT
LIMIT THERAPY OF CDT AND
COMPRESSION GARMENTS AND
MAINTENANCE FEES.
PATIENTS ARE STRUGGLING WITH
AFFORDING THE 20% MEDICARE DOES
NOT COVER AND DON'T HAVE A
SECONDARY INSURANCE.
SOME PRIVATE INSURANCES STILL DO
NOT COVER APPROPRIATE
COMPRESSION GARMENTS AT ALL.
NEXT CHALLENGE, INSURANCE
LIMITATIONS ON THE TOTAL VISITS
AND LENGTH OF VISIT AND
TREATMENT.
MOST THERAPISTS ARE ALLOWED ONLY
60 MINUTES WITH EACH PATIENT
THOUGH SOME LIMIT THIS TIME
FURTHER DUE TO PRODUCTIVITY
REGULATIONS.
IF A PATIENT DEMONSTRATES
ADDITIONAL COMPLEXITIES SUCH AS
COMORBIDITIES, WOUNDS THE 60
MINUTES MAY NOT BE SUFFICIENT TO
PERFORM THAT CDT TO THE HIGHEST
STANDARDS.
AND LACK OF REIMBURSEMENT FOR
GARMENT FITTING POSES A
CHALLENGE.
NEXT CHALLENGE IS POOR INSURANCE
REIMBURSEMENT RATES.
MANY MEMBERS REPORT DIFFICULTY
FOR THE PRACTITIONER TO HIGHER
EMPLOYEES TO REMAIN COMPETITIVE
WITH HOSPITAL-BASED
ORGANIZATIONS AND THEY HAVE
DECREASED THE STANDARDS
COMPARABLE TO THOSE OF THEIR
ORTHOPEDIC COUNTERPARTS AND MANY
THERAPISTS DISCONTINUED OFFERING
LYMPHATIC TREATMENT DUE TO THE
THERAPIST BURN OUT.
SOME MAJOR RESOURCE CHALLENGES.
KNOWLEDGEABLE HEALTH CARE
PROFESSIONALS AND A SIGNIFICANT
NUMBER OF TREATMENT DESERTS.
WE RECEIVED REQUESTS TO
DIAGNOSIS AND TREAT.
AND SECOND IS PRIVATE INSURANCE
AND FINANCIAL BURDEN.
CO-PAYS AND DEDUCTIBLES AND
BANDAGES AND ACCESSORIES AND
EVEN TREATMENT VISITS CAN CREATE
A CHALLENGE FOR THE MAJORITY OF
THE PATIENTS.
ACCESS TO CARE RESTRICTED BY
TRANSPORTATION AND HOME AGENCIES
OFFERING TREATMENT.
DEW TO LIMIT OF FINANCIAL
RESOURCES AND NOT EVERY AGENCY
HAS A CERTIFIED THERAPIST ON
STAFF TO PERFORM HIGH QUALITY
CDT.
PHYSICAL SYSTEMS AT HOME DURING
THE ACTIVE AND MAINTENANCE
PHASES OF TREATMENT.
MANY PEOPLE DO NOT HAVE FAMILY
OR IN HOME CARE TO APPLY BAND
ANDS AND/OR COMPRESSION GARMENTS
AND MAY DEMONSTRATE LIMITED
FLEXIBILITY TO DO SO
INDEPENDENTLY.
THIS LEADS TO ALTERNATIVE
COMPRESSION GARMENTS AND FINALLY
THE LIMITED RESEARCH TO SUPPORT
EVIDENCE-BASED PRACTICE THROUGH
MRAUNL THERAPIES, JEANING AND
TREATMENT TOOLS, MODALITIES AND
OTHER ADVANCED INTERVENTIONS.
THIS AFFECTS INSURANCE COVERAGE
AND REIMBURSEMENT AND ACCESS TO
THE TOOLS AND MODALITIIES AS MAY
ORGANIZATIONS REQUIRE THE
PURCHASE OF SUCH ITEMS TO BE
SUPPORTED BY RESEARCH.
AND OUR THREE WISHES.
IN THE FUTURE WE HOPE ALL HEALTH
CARE PROVIDERS NEW AND
REGARDLESS OF SETTING HAVE AT
LEAST THE BASIC KNOWLEDGE OF
LYMPHATIC SYSTEM AND ASSOCIATED
DISEASES ENOUGH TO MAKE A PROPER
DIAGNOSIS AND TIMELY REFERRAL TO
THE TREATMENT.
WE HOPE THE GENERAL PUBLIC HAS A
BASIC KNOWLEDGE OF THE MOST
COMMON LYMPHATIC DISEASES.
WE HOPE ALL PEOPLE LIVING WITH
LYMPHATIC DISEASE RECEIVE TIMELY
DIAGNOSIS AND RECEIVE CARE
WITHOUT BARRIERS WITH A
THERAPIST, PHYSICIAN OR SURGEON.
THANK YOU SO MUCH FOR ALLOWING
US TO BE HERE TODAY I'D LIKE TO
INTRODUCE OUR PATIENT
REPRESENTATIVE, CINDY WES JELS.
WESSELLS.
>> CAN YOU HEAR ME, I HOPE?
>> YES.
>> SORRY ABOUT THAT.
I'D LIKE TO -- THIS HAS BEEN AN
AMAZING COALITION ON THE ISSUE
EVERYONE IS FACING FROM THE
PATIENT PERSPECTIVE AND THE
INCREDIBLE WORK EVERYONE IS
DOING TO ADVANCE KNOWLEDGE OF
AND TREATMENT OF LYMPHEDEMA.
I WAS DIAGNOSED WITH PRIMARY
LYMPHEDEMA IN 1994.
THAT'S 26 YEARS AFTER MY BIRTH.
SO IT WAS A LONG ROAD OF NOT
KNOWING WHAT I HAD, WHAT WAS
WRONG WITH ME.
I DO HAVE A PICTURE I HOPE I CAN
GET ON THE SCREEN OKAY.
THIS WAS ME WHEN I WAS FIRST
DIAGNOSED.
SO PRETTY SEVERE AND SIGNIFICANT
AND AT SUCH A YOUNG AGE IT WAS
VERY TRAUMATIC.
SO ONE OF THE THINGS I'D LIKE TO
TALK ABOUT IS THE TRAUMA
EXPERIENCED WITH HAVING THIS
DISEASE -- ESPECIALLY FOR THE
DISFIGUREMENT AND NOT KNOWING
WHAT IT IS.
IT'S VERY IMPORTANT FOR TIMERY
CARE PHYSICIANS FOR THERAPISTS
THEY RECOMMEND AND APPROVE
BEHAVIORAL COGNITIVE THERAPY.
IT'S NOT ADDRESSED ENOUGH AND A
TOOL THAT NEEDS TO BE ADDRESSED.
THERE'S STILL SO FEW THERAPISTS
OUT THERE.
WHEN I WAS INITIALLY DIAGNOSED I
WAS TRAVELLING 50 MILES ROUND
TRIP EVERY DAY DURING MY NORMAL
WORKDAY TO GO GET THERAPY.
THERE'S STILL SO MANY PRIMARY
CARE PHYSICIANS.
THEY DON'T KNOW HOW TO ADDRESS
IT OR CODE IT EVEN.
I HAVE BEEN SELF-MANAGING MY
LYMPHEDEMA NOW PROBABLY 20 PLUS
YEARS.
SO I'M NOT SEEING A THERAPIST ON
A REGULAR BASIS.
WHEN I NEED A COMPRESSION
GARMENT I HAVE SOMEONE WHO WORKS
WITH ME AND I CAN PAY FOR IT
THROUGH HSA IT COMES FROM MY
POCKET.
ANOTHER THING WITH INSURANCE
COMPANIES AND NOT JUST
COMPRESSION GARMENT I BELONG TO
A FACEBOOK LYMPHEDEMA SUPPORT
GROUP COMMUNITY AND HEAR SO MANY
PEOPLE TALK ABOUT THE ISSUES
WITH CLOTHING AND SHOES.
FOR MYSELF, I CANNOT WEAR A
NORMAL SHOE ON MY LEFT FOOT I
HAVE TO WEAR A CAST SHOE WHEN I
BUY SHOES I PAY FULL PRICE AND
I'VE BEEN DONATING THE LEFT SHOE
TO A CHARITY BUT I THINK IF
INSURANCE COULD HELP ALLEVIATE
SOME OF THAT BURDEN WITH PEOPLE,
THAT WOULD BE AMAZING TOO.
BUT I AM SO DEEPLY GRATEFUL TO
EVERYONE ON THE CALL CHAMPIONING
THIS DISEASE.
AND THEY'RE MAKING GREAT SLIDES
SO THANK YOU VERY MUCH.
>> THANK YOU VERY MUCH.
THIS WAS VERY POWERFUL.
THANK YOU FOR SHARING
COURAGEOUSLY YOUR EXPERIENCES.
WITH THAT I WANT TO INVITE
CHEYANNE BACK.
I CUT OFF HER PRESENTATION.
SHE HAS HER PATIENT EXPERIENCE
TO SHARE AS WELL AND THAT'S THE
LAST ONE.
THANK YOU.
>> THANK YOU.
NOT ONLY AM I THE PRESIDENT MUCH
DRF I'M A PATIENT WITH
LYMPHEDEMA.
I HAVE OBESITY BUT THAT HASN'T
ALWAYS BEEN THE CASE.
I WAS A SMALL AND THIN CHILD AT
14 I WEIGHED 108 POUNDS BECAUSE
I WAS SHAPED DIFFERENTLY I BEGAN
TO GET TEASED BY MY FAMILY
CALLED THUNDER THIGHS AND HIPS
AND DOCTORS SAID I WASN'T EATING
ENOUGH.
BEGINNING OF MY EARLY 20s I
EXPERIENCED PERIODS OF
UNEXPLAINED WEIGHT GAIN DESPITE
CALORIC RESTRICTION AND
EXERCISE.
I WOULD MAINTAIN THE SAME WEIGHT
SEVERAL YEARS AND IN MONTHS GAIN
15 POUNDS.
I'VE BEEN TO A NUMBER OF
PHYSICIANS OVER THE YEARS AND
WITH THE EXCEPTION OF ONE, I
DIDN'T ENCOUNTER DISMISSIVE OR
CONDESCENDING PHYSICIANS.
I'M ONE OF THE LUCKY FEW.
MANY HAVE HORRIBLE EXPERIENCES
WITH PROVIDERS.
IN JUNE OF 2014, MONTHS BEFORE
MY 40th BIRTHDAY I DISCOVERED
THERE WAS A NAME FOR WHAT I HAD,
LYMPHEDEMA.
THERE WAS A DIAGNOSIS AND I HAD
LIPO SUCTION IN 2015 AND THE
PAIN IMMEDIATELY REDUCED BY 90%.
MY ACTIVITIES OF DAILY LIVING
IMPROVED TREMENDOUSLY.
I WAS ABLE TO LIFT MORE WEIGHT,
WALK FASTER AND BEND MY KNEES.
MY HUSBAND COULD WRAP HIS ARMS
AROUND ME WITHOUT PAIN AND DID
EXERCISE ON A HARD SERVICE AND
DID WELL FOR THREE YEARS BUT MY
LIFE TOOK SERIOUS TURNS.
WE RELOCATED, MY WORK GOT BUSIER
AND I ALLOWED MY NUTRITION TO
SLIP.
I GAINED OVER A HUNDRED POUNDS
IN ABOUT A YEAR WITH A
COMBINATION OF STRESS, POOR
NUTRITION AND PERIMENOPAUSE AND
HAVE LATE DIAGNOSED ADHD.
LYMPHEDEMA IS THE GIFT THAT
KEEPS GIVING.
HAD I BEEN DIAGNOSED IN MY EARLY
20s OR TEENAGER I COULD HAVE
LEARNED NEWER NUTRITION.
WITH EARLY DIAGNOSIS I COULD
HAVE STARTED CONSERVATIVE
TREATMENTS EARLIER AND PERHAPS
SAVED MYSELF PAIN AND SUFFERING
AND MONEY.
MY HOPE IS EVERY DOCTOR IN
AMERICA RECEIVES TRAINING IN
MEDICAL SCHOOL STARTING WITH
PRIMARY CARE IN LYMPHEDEMA.
WE NEED EARLY DIAGNOSIS,
SCREENING AS A CHILD AND WE NEED
AFFORDABLE OPTIONS FOR TREATMENT
THAT AREN'T MEDICATION.
MANY OF THE TREATMENTS ARE
SELF-CARE BUT WE AS A SOCIETY
AREN'T ALL MASTERS OF SELF-CARE
AND NEED MORE COACHING.
PERHAPS CASE MANAGERS TO HELP
PATIENTS STRUGGLING, VIRTUAL
OPTIONS.
THE OPTIONS ARE ENDLESS AND I'M
TRULY HONORED TO SHARE MY STORY
IN THIS TOWN HALL AND FOR ALL
THE WORK THE NIH IS DOING AND
THANK YOU GUYS AGAIN FOR
ALLOWING US TO BE ABLE TO TALK
ABOUT THIS VERY IMPORTANT TOPIC
TODAY.
THANK YOU EVERYONE FOR SHARING
YOUR STOWES.
NOW'S THE TIME TO OPEN THE
DISCUSSION SESSION AND TURN IT
TO CO-CHAIR.
>> I WANT TO ECHO SELEN'S THANKS
TO EVERYONE FOR SHARING YOUR
STORIES AS PART OF THE CONTINUED
FIGHT FOR ALL THE PEOPLE WE
COLLECTIVELY SERVE.
IT'S HEARTENING TO SEE THE
STRONG AUTO ALIGNMENT WITH THE
PRIORITIES AND THE COMMITTEES
WE'VE CREATED AND THEIR FOCUSSED
AREAS OF SCIENTIFIC ADVANCEMENT,
THIRD PARTY TOOLS AND ON AND ON.
IT SHOWS ME WE'RE MOVING IN THE
RIGHT DIRECTION.
I HEARD A FEW NEW ANGLES.
THE ROLE OF FOOD AS MEDICINE AND
ROLE OF SOCIAL MEDIA AROUND
FOCUS ON THE MOMENT OF
PREGNANCY.
AND WHAT THAT MEANS FOR US AND
OUR PATIENTS.
PLEASE USE THE RAISE HAND
FEATURE.
IN PARTICULAR TO ADDRESS THOSE
WHO ARE MESSAGING US ABOUT
MEDICARE.
I WANT TO REASSURE YOU WE ARE
INTERACTING WITH CMS TO
UNDERSTAND WHAT IS POSSIBLE.
HARDENED TO SEE SO MUCH
ALIGNMENT BETWEEN ALL OF YOU AND
WITH US AS WELL.
BECAUSE THERE ARE SO MANY
OVERLAPPING THEMES IN YOUR WORK,
NOT TO MENTION ALL THOSE WE'RE
TO HEAR FROM IN THE NEXT TOWN
HALL WITH THE FOUNDATION AND
LYMPHATIC ANOMALIES, MY QUESTION
FOR ALL OF YOU IS WHAT DO YOU
THINK WOULD BE POSSIBLE IF WE
ALL JOINED FORCES AND MORE
INTENTIONALLY WORKED TOGETHER?
I WOULD LOVE TO HEAR ON WHAT WE
THINK COULD BE POSSIBLE WHAT
GETS IN THE WAY AND WHAT COULD A
DEEPER COLLABORATION LOOK LIKE.
I'LL INVITE OUR GUESTS TO SHARE
YOUR PERSPECTIVE ON THAT
QUESTION.
>> HI, EVERYONE.
PLEASE GET ON YOUR VIDEO AND
START SPEAKING OR PUT YOUR HANDS
UP.
JENNIFER, SINCE YOU PUT YOUR
VIDEO ON, WOULD YOU LIKE TO
ANSWER.
>> I WAS JUST FIXING MY HAIR BUT
SURE.
I'M TAKING THE ANGLE OF
EDUCATION AND USING SOCIAL
MEDIA.
IF WE'RE ALL SENDING A SIMILAR
MESSAGE OR DISSEMINATING IN A
SIMILAR WAY IS POSSIBLE.
WE ARE ALL WORKING TOWARDS THE
SAME GOAL AND WOULD BE POWERFUL
TO FIGURE OUT HOW TO DO THAT.
THERE WERE SIMILAR THEMES
AMONGST ALL THIS.
WHILE WE HAD A SLIGHTLY
DIFFERENT PERSPECTIVE ON WHAT
THAT MEANT TO OUR MEMBERS AND
CLIENTS WE SERVE, I THINK IT'S A
GREAT FOUNDATION FOR US TO WORK
FROM TO FIGURE OUT HOW CAN WE
TAKE OUR UNIQUE PERSPECTIVES AND
USE THAT IN A JOINT EFFORT TO
IMPACT REAL DIFFERENCE.
>> LINDA.
>> I WAS GIVING A LECTURE TO A
PODIATRIST IN UCONN RECENTLY AND
WAS DISAPPOINTED TO LEARNING
THEY WERE STILL LEARNING THE OLD
STARLING'S LOST AND LYMPHATICS
ONLY PLAY A 10% ROLE IN PLANKING
EXTRA CELLULAR FLUID.
I WONDER IS THERE A WAY TO MAKE
SURE WHAT THEY'RE LEARNING IS UP
TO DATE AND PERHAPS CONNECTING
FOLKS WITH LYMPHATIC EXPERTISE
CAN PROVIDE EDUCATION AT THE
MEDICAL SCHOOLS.
THANK YOU, I AGREE.
WE'RE SPEAKING IN OUR
STAKEHOLDER CONVERSATION FOR
EXAMPLE MANY FIELDS INTERNAL
MEDICINE AND SURGERY AND OTHERS.
WE HOPE IT WILL LEAD TO
RECOMMENDATIONS TO THE REPORT
LEADING TO ACTION IN ADDITION
BEFORE THE NIH RELEASES ITS
RECOMMENDATION.
I HAVE A RETURN QUESTION FOR THE
MANY INDIVIDUALS IN THE MEETING
AS MEMBERS IS THERE A WAY TO
GENERATE CONVERSATION FROM.
THE THIS IS AFTER FORMAL
CERTIFICATION AFTER SKILL SETS
AND HOW CAN WE SPUR ON GREATER
INVOLVEMENT SO THE RESOURCES ARE
MORE WIDELY AVAILABLE.
>> I TRY TO ENCOURAGE STUDENTS
AND DECIDE THE IS SOMETHING THEY
WANT TO DO AND SEE PATIENTS
OUTSIDE AND I TRY TO STAY ON TOP
OF INFORMATION AND ENCOURAGE
PEOPLE IN MY NETWORK TO DO THE
SAME.
>> WE HAVE IT AS ENTRY LEVEL
BOARD EXAMINATIONS AND
LYMPHATICS IS ITS OWN THING.
WE'RE EMPHASIZING IT AS MUCH AS
WE CAN.
THE LACK OF PHYSICAL THERAPISTS
IN ACADEMIA TO ADEQUATELY
INSTRUCT IS A LIMITING FACTOR.
AND THE TRAINING IS IMPORTANT
FOR THE PATIENTS AND IT MAY BE
AN AWARENESS.
AND WE'RE TRYING TO PROMOTE THAT
AS WELL.
FOR THE SPECIFIC LYMPHATIC
TRAINING WE'RE STILL AN ADVOCATE
OF IT BEING POST GRADUATE LEVEL.
>> PART OF WHAT THE NLN'S FIS
INITIATIVE IS OFFERING MORE
EMERSION ACROSS THEY CAN BE USED
IN THE FIELDS AND SETTINGS AND
TRYING TO WORK WITH WE'VE BEEN
APPROACHED BY MULTIPLE DEANS AND
OTHER PROFESSORS STATING HOW
THERAPISTS ARE NOT PASSING ON
THE LYMPHATIC QUESTIONS AND
SEEMS TO BE AN ISSUE OF CONCERN
SO WE'RE TRYING TO PROMOTE THAT
BY OFFERING THIS EDUCATION
DURING CONFERENCES AS WELL.
>> THE EXPERIENCE OF LYMPHEDEMA
WAS MINOR TO CENTRAL LYMPHATIC
SYSTEM.
I'M IN BOSTON.
THE EPICENTER OF MEDICAL CARE.
FIVE BIG HOSPITALS AND NO ONE
KNEW.
COMMUNITY IS THE HEART OF WHAT
WE ARE AND WHAT WE DO AS A
GREATER COMMUNITY BECAUSE IT WAS
THROUGH THE COMMUNITY THAT I
FOUND MAX.
THEY GOT SUPPORT.
I HAD TO DRIVE DOWN TO U-PENN
SEVEN TIMES TO GET THE HELP I
NEEDED WHICH WAS A 15 HOUR DRIVE
EACH WAY.
WE'RE TALKING WHAT WE NEED TO DO
ALWAYS ENDS UP BEING ACTS OF
GREAT COURAGE FOR ALL OF US.
THAT WE HAVE EACH OTHER MAKES A
DIFFERENCE.
I WAS BLOWN AWAY.
I FINALLY SAID I NEED TO LEARN
EVERYTHING I CAN ABOUT THE
LYMPHATIC SYSTEM I THOUGHT I
KNEW AND DIDN'T.
DO YOU KNOW THREE-QUARTERS OF
THE FLUID IN YOUR BODY IS
TRANSPORTED FROM THE THORACIC
DUCT GOES TO ONE LITTLE PLACE.
THREE QUARTERS OF THE ENTIRE
FLUID IN OUR BODY.
I CALLED MY OLD PRIMARY CARE
PHYSICIAN AND SAY WHY?
WE DON'T KNOW.
THAT'S THE WAY IT IS.
MAX, YOU HAVE SOMETHING TO SAY.
IT
>> THANK YOU VERY MUCH.
AN ISSUE IS EDUCATION AND
ENDORSEMENT AND REIMBURSEMENT
AAS A COMMITTEE WE'LL TRY TO
ENCOURAGE GOVERNMENT TO DO
BETTER BUT ADVOCACY GROUP LUKE
YOURS MOVE THE NEEDLE AND IT'S
THE RESULT OF YOUR ADVOCACY AND
BEHIND THE HUGE PUSH.
BUT IN EUROPE 90% OF THE
PATIENTS THAT COME TO US ARE
SELF-REFERRED.
THROUGH FACEBOOK AND THE
CONDIT
CONDITIONS EVERY PATIENT COMES
TO US AND WE HAVE A VAE GOOD
SUCCESS AND AMAZING PAPER IT'S
HARD TO PUBLISH IN THE
LITERATURE.
THERE'S SUCCESSFUL TREATMENT.
I WOULD LIKE TO ASK EVERYBODY,
WHAT IS YOUR THOUGHT ABOUT THE
BEST VENUE TO THE PATIENTS?
MUCH COURSE SOCIAL MEDIA IS ONE
OF THEM BUT ANYTHING ELSE WE CAN
DO TO REACH OUT TO THE PATIENTS
TO SPREAD KNOWLEDGE AND
TECHNIQUES AND WHAT'S THE BEST
WAY TO REACH OUT TO THE PATIENT
POPULATION.
ANYBODY?
>> WHAT BECOMES POSSIBLE AND HOW
MIGHT WE QUESTIONS, WHEN I WAS
TRYING TO GET A FUNCTIONAL
CAPACITY EXAMINE TO BE ABLE TO
SHOW MY DETERIORATION THE OTT
HAD A STORY AND THERE'S POCKETS
OF PEOPLE WHO CARE BUT DON'T
KNOW WHAT TO DO WITH IT.
YOUR QUESTION HOW TO REACH THE
PATIENTS FOR ME SOCIAL MEDIA IS
HOW I FOUND IT.
I FOUND THE DOCUMENTARY AND EVEN
IF YOU SCREEN FOR IT OR DEAL
WITH OBESITY AND I LEARNED ABOUT
ADHD BY SEEING HOW MUCH PATIENTS
WITH LYMPHEDEMA HAD IT.
>> ONE OF MY DREAMS IS TO HAVE I
REMEMBER AND REMEMBER THE MANY
JUMP ROPE FOR FITNESS AND IF WE
TEACH KIDS WHAT THE LYMPHATIC
SYSTEM IS AND A LOT OF US ARE
BORN WITH IT LIKE MYSELF BUT
BEFORE YOU BECOME A PATIENT AS
PART OF LEARNING WHAT THE HEART
IS, AS PART OF LEARNING WHAT THE
CARDIOVASCULAR SYSTEM, IT'S LIKE
WE'RE ABLE TO IDENTIFY IT AND I
THINK EVERY CHILD IN THE UNITED
STATES SHOULD BE ABLE TO
IDENTIFY THEIR MAJOR LYMPH NODES
AND WHAT IT IS.
ONE OF MY DREAMS TO OPEN UP A
TEXTBOOK AND SEE IT'S DESCRIBED
LATER IN LIFE IF YOU DEVELOP
COMPLICATIONS YOU USE YOUR
CRITICAL THINKING SKILLS AND SAY
I LEARNED ABOUT THIS AT ONE
POINT IN MY LIFE.
MAYBE THIS IS WHAT IT IS.
I DON'T KNOW IF THAT'S TOO FAR
FETCHED PUT IT'S BEEN A PERSONAL
DREAM OF MINE TO HAVE THE KIDS
ACROSS AMERICA LEARN ABOUT THE
LYMPHATIC SYSTEM.
>> I'D LIKE TO FLIP THE
NARRATIVE AND WHY SHOULD THE
PATIENTS KNOW AND THE DOCTOR
SHOULD BE ABLE TO TELL THEM THEY
HAVE A CONDITION AND HOW TO
TREAT IT.
WOULD LOVE TO BE ABLE TO GET TO
A PLACE WHERE WE HAVE ENOUGH
PHYSICIANS EQUIPPED THAT WE KNOW
ABOUT IT.
NOW, GRANTED WE'RE NOT THAT
CURRENTLY.
FROM THERE WE'VE ALL TALKED
ABOUT SOCIAL MEDIA AND HAVING
AWARENESS CAMPAIGNS WHETHER THEY
BE NOT EVERYONE'S ON SOCIAL
MEDIA.
SO WHETHER THEY BE IN PREP
MATERIALS AND NEWSPAPERS BECAUSE
PEOPLE STILL READ THEM IN
POCKETS OF THE COUNTRY, RADIO
ADS AND TELEVISION COMMERCIALS.
A BIG PUBLICITY AND AWARENESS
CAMPAIGN.
>> I THINK HEATHER HAS A COMMENT
AND HAND RAISED.
>> THIS GOES BACK TO PATIENTS
AND FAMILY MEMBERS AND EVERYONE
BEING ABLE TO PLAY A ROLE IN
INCREASING AWARENESS AND
ENCOURAGING MORE THERAPISTS TO
GO INTO THIS FIELD.
I ALONG WITH MY SON'S
OCCUPATIONAL THERAPIST FOR 10
YEARS NOW HAVE BEEN ONCE A YEAR
GOING TO OUR LOCAL COLLEGE WITH
AN OCCUPATIONAL TRAINING PROGRAM
AND GIVING A PRESENCE AND I WANT
TO ENCOURAGE EVERYONE WHO LIVES
IN A CITY THAT HAS A COLLEGE OR
UNIVERSITY OR MAYBE HOSPITAL
WITH A TRAINING PROGRAM, YOU
DON'T NEED TO BE AN EXPERT.
IN FACT JUST BEING A PATIENT AND
SPEAKING ABOUT YOUR PERSONAL
EXPERIENCE CAN BE PERHAPS THE
MOST MOVING AND MOTIVATING THING
TO ENCOURAGE TO GO INTO THIS
FIELD AS A SPECIALTY WHEN THEY
REALIZE HOW MUCH OF A DIFFERENCE
THEY COULD MAKE IN THE LIVES OF
THESE PATIENTS.
SO I JUST WANTED TO ADD THAT TO
THE DISCUSSION.
>> GUENTER --
>> AND I WAS UNABLE TO RAISE MY
HAND OR HAVE TO DO IT
PHYSICALLY.
I ALSO WANT TO SHIFT TO THE
UNREASONABLE CONDITIONS OUR
THERAPIST FACING IN THE HOSPITAL
SETTING.
I AM PRIVATE PRACTICE YOU COULD
BE MORE FLEXIBLE WITH YOUR TIME
SPENT ON PATIENTS BUT I FIND
THAT THE ORGANIZATIONS THE NLM
AND ALL THE ORGANIZATIONS I
WOULD WISH THAT THEY WOULD
ADVOCATE A LITTLE BIT MORE FOR
BETTER WORKING CONDITIONS AND
DEFINE WHAT AN ADEQUATE CDT
TREATMENT IS LIKE BECAUSE OUR
PATIENTS COME WITH A LOT OF
DIFFERENT ISSUES AND PROBLEMS
BEYOND THE LYMPHEDEMA.
WE NEED TO BE A LITTLE BIT MORE
TAKING A STANCE OF WHAT A GOOD
CDT TREATMENT SHOULD BE LIKE IN
TERMS OF THE TIME OF THE
INDIVIDUAL TREATMENT AND
FREQUENCY OF THE TREATMENT.
I KNOW WE JUST PUBLISHED A PAPER
THAT SPELLS OUT GOOD CDT BUT WE
NEED TO DO MORE TO ADVOCATE SO
THE LYMPHEDEMA THERAPISTS DON'T
FEEL SO UTTERLY PRESSURED IN
PROVIDING TREATMENT IN THE
SHORTEST PERIOD OF TIME WHICH
IS -- WE'RE NOT MIRACLE WORKERS.
CDT TAKES TIME AND PAYS DIVIDE
BUT WE NEED TO ADVOCATE FOR THAT
IF THAT MAKES SENSE.
>> THANK YOU, GUENTER.
I'D LIKE TO RECOGNITION ALEXA A
COMMISSION MEMBER TRYING TO
RAISE HER HAND.
>> THANK YOU.
I'M A PRIMARY LYMPHEDEMA PATIENT
AND SERVE ON THE COMMISSION AND
ONE OF MY ROLES IS IN THE
PATIENT TOOLS COMMITTEE.
SOMETHING WE'VE BEEN GRAPPLING
WITH IS THE IDEA OF HOW DO WE
REACH THOSE IN THE LYMPHATIC
DISEASE COMMUNITY WHO DON'T KNOW
THEY'RE PART OF IT YES DOVING
-- DOVETAILING FROM DIAGNOSIS
FROM A BILLBOARD.
WHAT HAVE BEEN EFFECTIVE
CAMPAIGNS TO REACH PEOPLE AND
BROUGHT THEM INTO THE FOLD A
LITTLE BIT.
>> WE'LL HAVE ANSWERS AND THEN
GET TO WRAP UP OUR SESSION.
>> HERE EN NEW YORK WE'RE ALL
LOOKING WHAT TO DO TO SELL OUT
THE HOUSE AND WHAT YOU FOUND WAS
EVERYTHING SELLS A FEW AND YOU
DO EVERYTHING YOU CAN THINK OF
AND IT'S NOT JUST ONE APPROACH
BUT ONE OF THE THINGS WE'RE
DOING WE'RE SUCCESSFUL IN
GETTING A CANCER-RELATED
LYMPHEDEMA AND HAD KATHY BATES
AND STEVE GUTENBERG TO DO THE
VIDEO ANNOUNCEMENTS AND WE GOT
$14 MILLION IN FREE ADVERTISING
AND HAVE OVER FIVE PEOPLE A DAY
VISITING THE WEBSITE.
THAT'S ONE SEGMENT OF THE
POPULATION AND ONE APPROACH IS
MONEY AND ACCESS AND ACCESSING
THE INFORMATION AND THERE'S AN
ABUNDANCE OF PATIENT RESOURCE
INFORMATION ON ITS WEBSITE.
ONE OBSTACLE YOU HAVE TO FACE IS
THE FACT IS WE'RE ALSO
INTERESTED IN THE FIELD.
IT'S HARD TO SEE WHY IN ELSE
WOULD NOT BE.
AND I REMEMBER HAVING A
CONVERSATION WITH WOULD STOPPED
ME AND SAID I KNOW WHAT
LYMPHEDEMA IS.
HOW DO I MAKE MONEY AT IT?
WHAT APPOINTMENT.
I SAY YOU HAVE LYMPHEDEMA FIND A
THERAPIST.
HOW DO I MAKE MORE MONEY AND THE
OTHER THING WE FOUND WITH PEOPLE
WHO KNOW ABOUT LYMPHEDEMA IS THE
PATIENTS WHO CALL UP AND SAY MY
SURGEON SAID YES, YOU HAVE
LYMPHEDEMA.
FIND A THERAPIST IT WON'T KILL
YOU.
DON'T COMPLAIN.
EITHER IT'S NOT IMPORTANT OR I'M
NOT GOD.
LET ME CHOOSE.
A LOT OF TIMES THE DECISION IS
IT'S NOT PERSON.
AND PEOPLE LEAVE PSYCHOLOGICALLY
BRUFD AND THOSE ARE TWO RELATS
AND YOU CAN'T BE A GOOD DOCTOR
AND KNOW OF SOMETHING THAT
TREATS SOMETHING AND WHO IS
INTERESTED?
SURGEONS AND THEY FEEL LIKE
THEY CAN DO SOMETHING.
MOST DOCTORS FEEL THEY CAN'T DO
ANYTHING AND MEDICAL SCHOOLS
DON'T TEACH IT BECAUSE THERE'S
NOT A FINANCIAL INCENTIVE OR
DOCTORS CAN DO ABOUT THE DISEASE
OTHER THAN SAY FIND A THERAPIST.
>> THANK YOU, BILL.
THAT'S INSIGHTFUL.
JONATHAN, YOU GET THE LAST WORD
FROM THE ATTENDEE GROUP AND THEN
WE'LL WRAP UP.
>> THESE ARE GREAT IDEAS TO
REACH FOLKS AND WHAT YOU SHARED
WAS INSPIRING AND TRYING
EVERYTHING AND ANYTHING HIT
HOME.
I WOULD ENCOURAGE FOLKS TO
RESIST THE TEMPTATION TO SPEAK
OR PREACH TO THE CHOIR.
WE TALKED ABOUT FOLKS AND
GREATER COLLABORATION IN THE
ADVOCATES AND RESEARCH
ORGANIZATIONS RAISING AWARENESS
ABOUT LYMPHEDEMA AND LYMPHATIC
DISORDERS IS IMPORTANT.
I THINK A LOT OF THE NETWORKS
WE'RE REACHING ALREADY KNOW
ABOUT THESE CONDITIONS.
I THINK THINKING CREATIVELY
AROUND COMORBID DISEASE ADVOCACY
ORGANIZATIONS.
IN LYMPHEDEMA WE WORKED WITH
FOUNDATIONS TO GET THE WORD OUT
IN THEIR COMMUNITY AND HAVE
HYPERMORBIDITY SPECTRUM
DISORDER.
THINKING CREATIVE HOW CAN YOU
REACH AUDIENCES LIKELY TO
RESONATE WITH THE MESSAGE AND
IT'S HARD TO BUILD THE
COLLABORATION BUT IT PAYS
DIVIDES.
>> THANK YOU, JONATHAN.
>> I'D LIKE TO CONCLUDE BY
SAYING I WANT TO THANK EVERYONE
FOR THE PARTICIPATION THIS
MORNING.
THE EYE OPENING NEGATIVE SIDE OF
THE STORY AND THE INSPIRING
POSITIVE SIDE OF THE STORY.
I WOULD LIKE TO FINISH WITH A
LITTLE WORD OF HOPE.
EARLIER YOU HEARD THE CREATION
OF ARPA-H THAT HAS A LYMPHATIC
COMPONENT AND KEN STEELE THE --
KIM STEELE THE MANAGER OF THE
PROGRAM WASN'T ABLE TO ATTEND
BUT HAVE ENCOURAGING NEWS TO
PASS ON TO THE PARTICIPANTS AND
WEBCAST.
THERE'S TWO FORMAL UNDER ARPA-H
AR PA LIGHT AND GLIDE AND
THERAPEUTIC AND DIAGNOSTIC
DON'TS WITH LYMPHATIC DISEASE
AND THERE'S A PARALLEL PROGRAM
CALLED SPRINT FOR WOMEN'S HEALTH
AND ONE OF THE TOPICS WAS
WOMEN'S BRAIN HEALTH VIA
LYMPHATIC TARGETING AND SIX
TEAMS HAVE RECEIVED AWARDS FOR
NEUROLOGIC CONDITIONS IN WOMEN
WITH MIGRAINES AND DEMENTIA AND
OTHER NEURODEGENERATIVE
DISEASES.
THREE ENTITIES RECEIVED AWARDS
FOR DIAGNOSTIC TECHNOLOGIES AND
THREE FOR THERAPEUTIC
TECHNOLOGIES.
THERE'S ALSO AN ARPA-H SMALL
BUSINESS OPPORTUNITY FOR WHICH
TWO SOLICITATIONS HAVE BEEN
POSTED AND THERE ARE COMPANIES
DEVELOPING ORGAN ON A CHIP
TECHNOLOGY AND AN AMBULATORY
EDEMA MONITOR SOLICITATION
POSTED AND CURRENTLY IN SOURCE
SELECTION.
SO WE CAN CERTAINLY HOPE ANSWERS
FOR TOMORROW.
WE WANT TO DEAL IN THE WORLD OF
TODAY AND THANK YOU FOR LIVING
US ALL THE WONDERFUL SUGGESTIONS
ON HOW WE CAN TRY TO REFURBISH
OUR REPORT TO THE ADVISORY
COUNCIL SO EVERYONE UNDERSTANDS
THE NATURE OF THE PROBLEM.
I'D LIKE TO TURN IT BACK TO HAVE
SELEN TO CLOSE UP.
>> THANK YOU AS WE CLOSE THE
FORUM I'D LIKE TO EXPRESS OUR
GRATITUDE FOR THOSE WHO JOINED
AS PANELISTS AND LISTENERS.
THANK YOU TO ALL THE PATIENT
ORGANIZERS AND REPRESENTATIVES
WHO COURAGEOUSLY SHARED THEIR
EXPERIENCES.
IT WAS HARD NOT TO CRY.
IT WAS VERY POWERFUL.
I HOPE WE ALL HOPE IT WILL HELP
ENHANCE OUR UNDERSTANDING OF
LYMPHATIC DISEASE AND HEALTH AND
CARE OF THOSE EFFECTS.
WE'RE ALSO DEEPLY GRATEFUL TO
ALL THE MEMBERS AND CO-CHAIRS
AND THE THOUGHT PROVOKING
DISCUSSIONS AND ONE REMINDER
THIS IMPORTANT DISCUSSION IS
RECORDED AND WILL BE AVAILABLE
IN A COUPLE OF DAYS ON THE SAME
LINK ON THE NIH VIDEOCAST AND
ALSO IN THE WEBSITE AND STORES
PREVIOUS QUARTERLY MEETINGS AS
WELL.
I WANT TO ACKNOWLEDGE THE
OUTSTANDING SUPPORT BY THE NHLBI
TEAM AND THE LEADERSHIP,
EXTRAMURAL PROGRAM STAFF AND THE
WORKING GROUP AND COORDINATION
COMMITTEE AND THE NIH VIDEOCAST
TEAM AND NHLBI WORKSHOP SUPPORT
TEAM.
THEIR EFFORTS HAVE BEEN
INSTRUMENTAL WITH THE MEETINGS.
THANK YOU AND WITH