>> THANK YOU, IT'S GOOD TO SEE
EVERYONE, WELCOME TODAY TWO OF
THE SYMPOSIUM. IT'S A PLEASURE
TO BE INTRUSION THIS MORNING
NIH'S DEPUTY DIRECTOR DR. AMY
KELLEY WHO WILL PROVIDE
PRERECORDED REMARKS. WAS
APPOINTED AS DIRECTOR OF THE NIA
IN SEPTEMBER 2022. PRIOR TO
THIS WAS A PROFESSOR AND VICE
CHAIR OF HEALTH IN THE
DEPARTMENT OF GERIATRICS AND
SENIOR ASSOCIATE DEAN FOR GENDER
EQUITY IN RESEARCH AFFAIRS AT
THE ICON SCHOOL OF MEDICINE IN
MOUNT SINAI IN NEW YORK. SHE
FOCUSED ON SERIOUSLY ILL ADULTS
AND WAS SUPPORTED BY THE NIA
THROUGH MULTIPLE GRANTS, THE
NATIONAL PALLIATIVE CARE
RESEARCH CENTER AMONG OTHERS.
IS A TWO TIME ICON SCHOOL OF
MEDICINE AND A CLINICIAN OF THE
YEAR HONOREE AND IS RECOGNIZED
FOR EXEMPLARY WORK INCLUDED FOR
JAR REE YAT RISK SOCIETY. SHE
SENDS HER REPORTS FOR -- HER
REGRETS FOR NOT BEING ABLE TO
PARTICIPATE IN-PERSON BY WILL BE
JOINING US VIRTUALLY. THANK
YOU.
>> GOOD MORNING. AND WELCOME
TODAY TWO OF THE NIH PAIN
CONSORTIUM SYMPOSIUM FOCUSED ON
SEX AND GENDER DIFFERENCES MY
NAME IS AMY KELLEY I AM THE
DEPUTY DIRECTOR OF NIA WOULD
HAVE BEEN THE 20 INSTITUTES HERE
AND I AM SO SORRY I AM UNABLE TO
BE HERE WITH YOU IN-PERSON
TODAY. TODAY'S TOPIC SPEAKS TO
ME BOTH PERSONALLY AND
PROFESSIONALLY. I'M A
PRACTICING JAR YA TRIGS AS WELL
AS A RESEARCHER AND I WORKED FOR
DECADES TO IMPROVE THE LIVES OF
PEOPLE WITH SERIOUS ILLNESS AND
PAIN I WILL BE SURE TO CATCH THE
RECORDING LATER ON AND TODAY
JUST WANTED TO TELL YOU A LITTLE
BIT ABOUT NIA'S CONNECTION WITH
THE NIH PAIN CONSORTIUM. WE'VE
BEEN A PROUD MEMBER OF THE
CONSORTIUM FOR AWHILE AND IN
THIS ROLE WE HAVE BEEN CHARGED
WITH STUDYING PAIN MANAGEMENT
SPECIFICALLY IN OLDER ADULTS.
IT'S AN UNDERSTUDIED POPULATION
WITH UNIQUE AND COMPLEX
CONSIDERATIONS. SO AT LEAST 40%
OF OLDER AMERICANS REPORT LIVING
WITH CHRONIC PAIN, OFTEN IN
MULTIPLE BODY SITES AND OFTEN
WITH MULTIPLE TYPES OF PAIN.
THE LEADING CAUSES OF CHRONIC
PAIN IN OLDER ADULTS INCLUDE
MUSCULOSKELETAL CONDITIONS,
NEUROPATHIES, CANCER RELATED
PAIN AND HEADACHES.
ADDITIONALLY, TREATMENT OF PAIN
IN LATER LIFE IS OFTEN
COMPLICATED BY ADDITIONAL
CONSIDERATIONS THAT INCLUDES A
PERSON'S COMORBIDITIES AND THE
SIMULTANEOUS USE OF MULTIPLE
OTHER MEDICINES FOR THESE
CONDITIONS. ASEAT MET -- ASEAT
MET FIN AND ATYPICAL ANALGESICS
ARE THE MAINSTAYS HOWEVER
THERE'S RISKS OF ADVERSE AFFECTS
LIMITING THEIR USE. FURTHERMORE
IT CAN BE DIFFICULT FOR
PHYSICIANS AND FAMILIES TO EVEN
KNOW IF AN OLDER ADULT IS IN
PAIN, PARTICULARLY IF THAT
PERSON HAS COGNITION OR
COMMUNICATIONS PROBLEMS THAT
MIGHT HAVE BEEN CAUSED BY A
STROKE, DEMENTIA OR ANOTHER
HEALTH CONDITION, GIVEN THESE
COMPLEXITIES, NIA HAS A
LONG-STANDING INTEREST IN
RESEARCHING THE MEASUREMENT, AND
THE MANAGEMENT OF PAIN WITH
AGING. OVER THE YEARS NIA AS
ISSUED SEVERAL PAIN FOCUSED
OPPORTUNITIES THIS HAS INCLUDED
AN ACTIVE NOTICE OF SPECIAL
INTEREST FOR RESEARCH
APPLICATIONS THAT FOCUS ON
IMPROVING OUR UNDERSTANDING OF
MECHANISMS THAT UNDERLINE A PAIN
EXPERIENCE WITH AGING. THAT
ENHANCE THE ASSESSMENT, THE
PREVENTION AND MANAGEMENT
STRATEGIES FOR PAIN IN OLDER
ADULTS. AND ALSO, IMPORTANTLY,
IMPROVING HEALTH EQUITY OF AGING
POPULATION SUFFERING WITH PAIN.
ADDITIONALLY JUST THIS PAST
APRIL IN COLLABORATION WITH THE
NATIONAL
NATIONAL CENTER FOR
COMPLEMENTARY AND INTEGRATIVE
HEALTH NIH PUBLISHED A FUNDING
OPPORTUNITY TO SUPPORT A
CLINICAL TRIALS NETWORK THAT
WILL COLLECT SAFETY AND EARLY
EFFICACY DATA ON THE USE OF
PSYCHEDELIC ASSISTED THERAPY IN
OLDER ADULTS LIVING WITH
SPECIFIC CHRONIC PAIN CONDI
CONDITIONS. FURTHERMORE, NIA
SUPPORTS A GREAT DEAL OF
RESEARCH IN PALLIATIVE CARE AND
IN ADDITION TO THIS, WE HAVE
RECENTLY PARTNERED WITH ICS
ACROSS NIH TO RELEASE A NEW
NOTICE OF A FUNDING OPPORTUNITY
FOR APPLICATIONS TO THE
PALLIATIVE CARE RESEARCH
CONSORTIUM. THIS FOCUSES ON
PROVIDING RESOURCES.
EXPERTISE. AND COORDINATION FOR
THOSE LIVING WITH SERIOUS
ILLNESSES ACROSS THE FULL LIFE
SPAN. THE IDEA IS THE
CONSORTIUM WILL LEVERAGE THE
SYNERGIES, COORDINATE THE
EFFORTS AND DEVELOP THE
SCIENTIFIC WORKFORCE THAT WILL
ADDRESS THE REMAINING GAP IN
PALLIATIVE CARE RESEARCH THAT
WILL ENCOMPASS EVERYTHING FROM
ALZHEIMER'S AND RELATED
DEMENTIAS TO CANCER AND A RANGE
OF OTHER SERIOUS ILLNESSES AND
POPULATIONS. AN IMPORTANT FOCUS
WILL BE TO CONDUCT RESEARCH TO
BETTER UNDERSTAND AND TO ADDRESS
THE DISPARITIES SEEN IN ACCESS,
QUALITY AND THE USE OF
PALLIATIVE CARE SERVICES FOR
HEALTH DISPARITY'S POPULATIONS.
ADDRESSING HEALTH DISPARITIES
INCLUDING THOSE RELATED TO SEX
AND GENDER DIFFERENCES IN
PALLIATIVE CARE AND PAIN
TREATMENT ARE OF UTMOST
IMPORTANT TO ME. NIA IS DEEPLY
COMMITTED TO CLARIFY SEX AND
GENDER DIFFERENCES IN
AGE-RELATED CONDITIONS AND OUR
BROAD ISSUES ARE THOSE THAT
DRIVE THE DIFFERENCES, THAT
OPERATE DIFFERENTLY IN SEX AND
GENDER SPECIFIC MANNERS AND THE
FACTORS OF INTEREST INCLUDE
BIOLOGICAL, BEHAVIORAL, SOCIAL,
PSYCHOLOGICAL AND HEALTH CARE
SYSTEM RELATED FACTORS. MANY OF
MY TOP GOALS AS NIA'S CHIEF
DIVERSITY OFFICER REVOLVE AROUND
IMPROVING HEALTH EQUITY WHICH
INVOLVES UNDERSTANDING AND
MITIGATING THE LIFELONG HEALTH
IMPACT OF SOCIAL EXPERIENCES AND
PERSONAL BACKGROUNDS SO TODAY,
WE'LL HEAR FROM INDIVIDUALS WITH
LIVED EXPERIENCE AND THEN A
SCIENTIFIC PANEL THAT WILL FOCUS
ON APPROACHES TO PAIN MANAG
MANAGEMENT. YOU KNOW, I KNOW
FROM MY PROFESSIONAL EXPERIENCE
AS YOU KNOW FROM YOUR EXPERIENCE
OF PEOPLE LIVING WITH PAIN, AS
CAREGIVERS AND CARE PARTNERS, AS
RESEARCHERS AND ADVOCATES, YOU
KNOW HOW UNIQUE A PERSON'S
EXPERIENCE CAN BE. AND THE
IMPORTANCE OF CONTINUED
ADVANCEMENT IN PAIN RESEARCH.
SO YOUR INPUT DURING THIS
SYMPOSIUM WILL HELP TO INFORM
FUTURE RESEARCH. SO I DO WANT
TO EXPRESS MY GRATITUDE TO ALL
OF TODAY'S SPEAKERS, TO THE
AUDIENCE MEMBERS OF THE
SYMPOSIUM AND TO THE ORGANIZERS
WHO I KNOW PUT IN COUNTLESS HOUR
TO MAKE THIS MEETING HAPPEN.
THANK YOU FOR COMING TODAY. WE
WILL DO THE WORK NECESSARY TO
ENSURE THE FUTURE OF PAIN
RESEARCH MEETS THE NEEDS OF ALL
SO PLEASE DO ENJOY THE REMAINDER
OF THE EXCITING SYMPOSIUM AHEAD
OF YOU. THANK YOU.
>> GOOD MORNING. THIS ONE? MY
NAME EDNA AND IT'S MY PLEASURE
TO INTRODUCE THE NEXT PANEL.
BUT BEFORE I DO THIS, I WANT TO
HIGHLIGHT THE CRUCIAL IMPORTANCE
OF INCLUDING PERSPECTIVES OF
PEOPLE WITH LIVE EXPERIENCE IN
RESEARCH. ESPECIALLY IN PAIN
RESEARCH. NIH HAS EMBRACED THIS
IN A NUMBER OF INITIATIVES AND
THE RESEARCH AND ULTIMATELY
HEALTH CARE WILL BE BETTER FOR
IT. THE HEEL INITIATIVE HELPING
TO END ADDICTION LONG-TERM HAS
LED THE WAY.
WITH THE HEAL COMMUNITY PARTNERS
COMMUNITY. HEAL PUTS A PRIORITY
ON PATIENT AND COMMUNITY
PERSPECTIVES IN RESEARCH AND
REALLY WILL DRIVE SCIENTIFIC
SOLUTIONS FOR COMPLEX,
MULTIFACETED CONDITIONS, LIKE
PAIN THAT CANNOT BE EFFECTIVE
WITHOUT KNOWING IF, HOW, AND HOW
WELL THEY HELP REAL PEOPLE WITH
PAINFUL CONDITIONS. CONNECTING
WITH AFFECTED INDIVIDUALS IS
ALSO IMPORTANT FOR CHOOSING
MEANINGFUL RESEARCH OUTCOMES.
FOR EXAMPLE, LOOKING FOR
EFFECTIVE TREATMENT ON HOW PAIN
AFFECTS DAILY FUNCTION AND LIFE
SATISFACTION. SO, THE HEAL
COMMUNITY PARTNERS COMMITTEE WAS
ESTABLISHED IN 2021. TO PROVIDE
INPUT TO HEAL ON KEY ISSUES
FACED BY INDIVIDUALS AFFECTED BY
PAIN CONDITIONS. OR OPIOID USE
DISORDER TO ENSURE THE
RELEVANCE, AND PRACTICALITY OF
HEAL SUPPORTED RESEARCH. INPUT
FROM THE COMMITTEE, WHICH
INCLUDES PATIENTS, ADVOCATES,
AND FAMILY MEMBERS OF PEOPLE
WITH PAIN AND ADDICTION IS USED
BY HEAL TO IDENTIFY, REFINE, AND
PRIORITIZE PATIENT AND COMMUNITY
ENGAGEMENT ACTIVITIES THAT WILL
ENSURE THE GREATEST RELEVANCE
AND IMPACT OF HEAL RESEARCH. SO
HERE ARE JUST A FEW EXAMPLES OF
PATIENT ENGAGEMENT IN HEAL
STUDIES. IN THE HEAL FUNDED
HEMODIALYSIS OPIOID PRESCRIPTION
EFFORT OR HOPE STUDY, PATIENTS
HAVE DESIGNED MATERIALS FOR
RECRUITMENT, PARTICIPATED IN THE
WRITING OF INFORMED CONSENT
DOCUMENTS, AND DESIGN AND
PARTICIPATED IN INTRODUCTORY
VIDEOS TO PRESENT THE STUDY TO
POTENTIAL PARTICIPANTS. ANOTHER
EXAMPLE IS IN THE BACK PAIN
CONSORTIUM OR BACKPACK,
COMMUNITY MEMBERS IN ANN ARBOR
MICHIGAN ARE WORKING WITH HEAL
SCIENTIST TO GROUND RESEARCH IN
REALITY. BASED ON COMMUNITY
FEEDBACK.
THE BACKPACK TEAM CONDUCTED
SEVERAL APPROACHES SUCH AS BEING
OPEN ON WEEKENDS AND IN
LOCATIONS BEYOND UNIVERSITY
HOSPITALS OR CLINICS, PROVIDE
TRANSPORTATION TO STUDY LOCATION
FOR PARTICIPANTS. PARTNERING
WITH COMMUNITY MEMBERS TO CREATE
FRIENDLY ENVIRONMENTS AND
DISCUSSION BETWEEN RESEARCHERS
AND COMMUNITY MEMBERS. AND
ASSEMBLING COMMUNITY ADVISORY
BOARDS AFTER FIRST CONDUCTING
COMMUNITY FOCUS GROUPS ON HOW TO
DO IT. AND THE BACKPACK TEAM
ALSO CREATED TWO IMPORTANT
POSITIONS STAFFED BY COMMUNITY
MEMBERS. A COMMUNITY RESEARCH
FACILITATOR AND A RECRUITMENT
LIAISON. SO, IN THIS CONTEXT, I
AM VERY HAPPY TO INTRODUCE OUR
PANEL MEMBERS FOR TODAY'S
DISCUSSION OF PERSPECTIVES OF
PEOPLE WITH LIVED EXPERIENCE.
SO, TWO OF THEM WILL BE ON ZOOM
AND TWO OF THEM WILL BE HERE
TODAY. FIRST, EDEN BUELL
GRADUATED AND WAS A TRAINEE WITH
A JUSTICE INVOLVED AND EMERGING
ADULT POPULATION OR JIEAP
INITIATIVE AT WHICH HE IS NUT
HEALTH SYSTEMS INSTITUTE. EDEN
IS A DEDICATED MEMBER OF HEAL'S
CONNECTION. LEVERAGING HER
PERSONAL EXPERIENCES TO
EFFECTIVELY SERVE AS ONE OF THE
FACILITATORS FOR THE HEAL'S
CONNECTIONS LIVED EXPERIENCE
PANEL. HER INSIGHTS ARE
ESPECIALLY VALUABLE GIVEN HER
BACKGROUND AS AN AFRO LATINA WHO
HAS GRAPPLED WITH MULTIPLE PAIN
CONDITIONS.
SINCE THE AGE OF 11. EDEN
RECOGNIZES THE URGENT NEED FOR
EQUITABLE HEALTH CARE,
REGARDLESS OF IDENTITY AND SHE
HOPES TO BUILD A CAREER IN
RESEARCH ESPECIALLY FOCUSING ON
RECOVERY SUPPORT SERVICES,
HEALTH CARE DISPARITIES, STIGMA
AND DISCRIMINATION. WITH A FIRM
COMMITMENT TO ADDRESSING THESE
ISSUES. EDEN STANDS AS A
DEDICATED ADVOCATE, POISED TO
MAKE LASTING IMPACT IN THE FIELD
OF RESEARCH THROUGH THE LENS OF
HER LIVED EXPERIENCE. NEXT, IS
CHARIS HILL WHO I BELIEVE IS
ONLINE. OKAY. IS A DISABILITY
ACTIVIST, WRITER, AND SPEAKER
LIVING WITH AXIAL RESPONSE DID I
LOW ARTHRITIS, MAJOR DEPRESSIVE
DISORDER, ANXIETY AND
POST-TRAUMATIC STRESS DISORDER
IN THEIR WORK CHARIS USES
NARRATIVE ENGAGEMENT TO ADVANCE
SOCIAL JUSTICE FOR THOSE WITH
MULTIPLE DISABILITIES. CHARIS
WRITES FOR VARIOUS MEDIA OUTLETS
INCLUDING HEALTH CENTRAL, HEALTH
LINE, BUSINESS INSIDER, AN KILO
RESPONSE DID I LYSIS NET AND
THIS LIFE AND HAS HAD COVER
STORIES FOR ARTHRITIS TODAY AND
RESPONSE DID I LIGHTS MAGAZINE.
CHARIS GRADUATED FROM MEREDITH
COLLEGE WITH A BA IN PSYCHOLOGY
IN WOMEN'S STUDIES. CHARIS IS
D
DEEPLY INVOLVED IN LEGISLATIVE
CAMPAIGN TO IMPROVE RESPONSE DID
I LIGHTS AND DISABILITY
EDUCATION.
FUNDING AND ACCESS TO TREATMENT.
SHE WORKED -- IN 2021, THEY
WORKED WITH CONGRESSWOMAN DORIS
MAT SUE WEE AND THE SHON DID I
LIGHTS ASSOCIATION OF AMERICA TO
INTRODUCE RESOLUTION 135 WHICH
IF PASSED WILL DECLARE MAY AS
RESPONSE DID I LOW LIGHTS
AWARENESS MONTH.
CHARIS WAS AWARDED THE PROGRESS
IN POLICY AWARD BY THE ARTHRITIS
FOUNDATION FOR EFFORTS IN
STATEWIDE AND NATIONAL
LEGISLATIVE ADVOCACY EFFORTS AND
WAS RECOGNIZED IN 2021 ASSE AS
ADVOCACY VOLUNTEER OF THE YEAR.
WE HAVE ALSO SONYA WHO IS THE
AUTHOR OF BOOKS, ESSAYS AND
ARTICLES, TEACHES AT FAIRFIELD
UNIVERSITY AND IN FAIRFIELD
RESIDENCY FMA PROGRAMS HER WORK
BEFORE ACADEMIA INCLUDE THE WORK
IN THE NONPROFIT SECTOR AS WELL
AS JOURNALISM AND SOCIAL WORK.
SHE RECEIVED A KIPLINGER
FELLOWSHIP IN PUBLIC INTEREST
JOURNALISM AND IN FMA IN
CREATIVE WRITING WITH THE OHIO
STATE UNIVERSITY. HER BOOKS
INCLUDE COVER ME, A HEALTH
INSURANCE MEMOIR AND PAIN WOMAN
TAKES YOUR KEYS AND OTHER ESSAYS
FROM A NERVOUS SYSTEM. HER
ESSAYS HAVE APPEARED IN THE NEW
YORK TIMES, CREATIVE NONFICTION,
BREVITY IN WASHINGTON POST, THE
ATLANTIC AND OTHER OUTLETS. SHE
RECEIVED A 2012 CREATIVE
NONFICTION AWARD FROM TUR RAIN
AND HER ESSAYS WERE NOTABLE IN
BEST AMERICAN ESSAYS MANY TIMES.
SONYA IS ALSO A DISABILITY
ADVOCATE AND HAS BEEN ACTIVE FOR
TREATMENTS AND SUPPORT FOR
CHRONIC PATIENTS. SHE WAS THE
COFOUNDER OF THE ACTIVIST
NETWORK IN COLUMBUS, OHIO AND
MOST RECENTLY FOUNDED THE 2017
ONLINE DISABILITY MARCH
CURRENTLY SERVED AS A COMMUNITY
BOARD MEMBER FOR THE NATIONAL
PAIN ACTION CENTER AND FINALLY,
SHAREE TURPIN SEEKS OUT STORIES
THAT NO ONE WANTS, HER PASSIONS
ARE FOR THE ARTS, PUBLIC HEALTH
AND MEDICINE. BUT EVERY NOW AND
THEN FINDS A STORY ON HOW BOTH
COLLIDE. AS A GRADUATE OF NEW
HOUSE AT SYRACUSE UNIVERSITY SHE
HAS BEEN GIVEN THE CHANCE TO
INTERVIEW CURTIS BLOW.
GODFATHER OF HIP HOP, FRANK
MARSHALL, HOLLYWOOD'S FAVORITE
PRODUCE OF FILMS SUCH AS JURY
RAS SICK PARK, SHE IS KNOWN FOR
HER ADVOCACY FOR SICKLE CELL
DISEASE.
AS A PATIENT OF THE DISEASE HER
SHAREE KNOWS THE TRICKS AND
HIDDEN DOORS IT TAKES TO SURVIVE
DEALING WITH A CHRONIC ILLNESS
IN THE HEALTH CARE SYSTEM
SOMETIMES DOES NOT ACKNOWLEDGE
HER EXISTENCE. SHE CURRENTLY
WORKS AS A PATIENT NAVIGATOR AT
THE CHILDREN'S HOSPITAL IN
ROCHESTER NEW YORK, SUPPORTING
CHILDREN AND FAMILIES AFFECTED
BY SICKLE CELL. SO AS YOU CAN
SEE, WE HAVE QUITE A PANEL. AND
WE ARE VERY EXCITED TO HAVING
THIS VERY, VERY IMPORTANT
DISCUSSION SO WELCOME FOR THE
TWO OF YOU ONLINE AND THE TWO OF
YOU HERE IN-PERSON TODAY. THANK
YOU.
>> THANK YOU SO MUCH FOR HAVING
ME, AFTER BEING INTRODUCED LIKE
THAT I FEEL VERY, VERY SPECIAL.
I WANT TO TAKE A MOMENT TO SEE
THAT I AM AN INDIVIDUAL WITH
LIVED EXPERIENCE. I HAVE TWO
PAIN CONDITIONS. ONE IS VERY
GENDER SPECIFIC. I HAVE
ENDOMETRIOSIS. I'VE HAD THAT
SINCE 11 AND THAT MEANS I'VE HAD
IT FOR 24 YEARS SO JUST SUPER
AGED MYSELF. AND I AM ALSO AN
INDIVIDUAL THAT WAS RECENTLY
DIAGNOSED WITH LUPUS AND I'M
STILL LEARNING WHAT THAT LOOKS
LIKE, HOW TO NAVIGATE THAT AND
JUST KIND OF MAKING MY WAY. BUT
JUST KIND OF HOW MY BIO SAID, I
AM -- I WISH I WAS HERE TO
REALLY TALK ABOUT MYSELF BUT THE
REALITY IS I AM A PATIENT
ADVOCATE THROUGH AND THROUGH.
AND I AM HERE TO TALK ABOUT MY
GIRL, MY MOM. HER NAME IS
KELLEY RIVERA, SHE WAS A DOUBLE
LEG AMPUTEE ON DIALYSIS. AND I
AM A POSTBAC LAUREATE TRAINEE SO
I LIKE TO TELL PEOPLE I'VE TAKEN
THE SCENIC ROUTE TO COLLEGE AND
THROUGHOUT MY COLLEGE CAREER I
HAD THE PRIVILEGE OF PROVIDING
CARE FOR HER AND TAKING CARE OF
HER UNTIL SHE PASSED ON.
MY MOM WAS A WARRIOR. SHE WAS
DEFINITELY AN INDIVIDUAL THAT
KEPT FIGHT. SHE HAD NINE
REVISIONARY SURGERIES ON HER
LEG. SHE HAD MULTIPLE FISTULAS
AND HEART ATTACKS AND THE PAIN
SHE HAD TO ENDURE IS SOMETHING
THAT I WOULD NEVER WANT TO GO
THROUGH. BUT I ADMIRED HER
STRENGTH AND HER WILL TO KEEP
GOING. AND WHEN WE -- WE DID
EVERYTHING WE COULD TO KEEP HER
AROUND. SHE WAS 52 WHEN SHE
PASSED AND WE HAD A BUMP IN THE
ROAD CALLED CALENDAR SI FEW LACK
SIS. IT'S WHEN YOUR CAPILLARIES
FILL WITH CALCIUM SO WE'RE AT A
STANDSTILL, WE'RE NOT GOING TO
WIN. AND MY MOM, BEING A
PATIENT THAT SHE WAS, IN
HOSPITAL, KNEW SOMETHING WAS
WRONG. SHE KNEW THAT THIS ISN'T
THE NORMAL NORMAL THAT SHE'S
TAKEN IN THE HOSPITAL BEFORE AND
WIZ WAS REALLY CONFUSED ON WHAT
WAS GOING ON WITH HER.
WHILE ON THE HOSPITAL BED SHE
WROTE AN AMAZING POEM THAT SPEAK
TO THE PATIENT EXPERIENCE THAT I
HOPE THAT EVERYONE AT SOME POINT
CAN HEAR BECAUSE IT'S AMAZING
THAT THIS INDIVIDUAL WHO HAS
FOUGHT SO HARD CAN WRITE
SOMETHING SO BEAUTIFUL AND IF I
COULD I'D LIKE TO SHARE THAT
WITH YOU ALL RIGHT NOW IS POEM
IS TITLED UNRELIABLE AND WRITTEN
BY KELLIANNE RIVERA.
I TELL YOU WHAT'S HAPPENED.
WHAT ISN'T QUITE RIGHT. WHAT
I'M EXPERIENCING, MY FEARS, MY
PAINS, MY STRAINS, WHAT MAKES ME
UNRELIABLE. WHAT MAKES ME
UNTRUSTWORTHY. UNBELIEVABLE.
CAN YOU FEEL MY FEELINGS? MY
EXPERIENCES? MY TREMORS? DO
YOU HAVE ENOUGH EMPATHY TO KNOW
WHAT I SEE IS REAL? THAT MY
PAIN IS REAL. THAT MY FEARS,
RIGHT OR WRONG, ARE REAL. I ASK
YOU AS A HUMAN NOT AS A TITLE,
AN RN, TO LISTEN AND HEAR, GIVE
ME THE BENEFIT OF THE DOUBT.
LOOK AT ME AS A PERSON, NOT AS A
PATIENT. CHART. ILLNESS. JUST
ANOTHER CASE. LOOK AT ME AS A
FIGHTER, A SURVIVOR, AS A PERSON
WHO DIDN'T GIVE UP. ONE WHO
ROLLS WITH THE PUNCHES YET STILL
FINDS A WAY TO KEEP A SMILE ON
MY FACE AND MAYBE IF GIVEN THE
CHANCE I COULD PUT ONE ON YOURS
TOO. LOOK AT ME, KELLEY, THE
MOTHER, GRANDMOTHER, WIFE,
DAUGHTER, FRIEND, LOOK AT ME AND
THEN DECIDE IF I AM UNRELIABLE.
MY MOM WOULD PASS A FEW MONTHS
AFTER THIS. AND IT JUST GOES TO
SHOW THAT WE'RE A PEOPLE. WE'RE
TALKING ABOUT ILLNESSES AND PAIN
AND GENDER WHICH IS GREAT BUT AT
THE END OF THE DAY THERE'S A
HUMAN ELEMENT THAT WE ALL HAVE
TO KIND OF BLOCK OFF TO KIND OF
KEEP GOING. BUT IT'S SOMETHING
THAT MY MOM WANTED TO REMIND US
ALL AND SO THAT IS BEEN THE
MESSAGE THAT I HOPE TO CONTINUE
ON, CONTINUE TO LIVE THROUGH HER
AND SPREAD HER MESSAGE THAT
WE'RE HUMANS AND NOT PATIENTS
AND CHARTS. SO THAT'S ALL,
THANK YOU.
>> THANK YOU, EDEN, I AM
WONDERING IF YOU CAN SHARE A
LITTLE BIT. THERE THE PAST YOU
SHARED WHY SHE WAS REACTING TO
THAT. WHY SHE WAS FEELING
PEOPLE THOUGHT SHE WAS
UNRELIABLE. WHAT WAS THE WHOLE
STORY BEHIND THAT?
>> YEAH, THANK YOU. I WASN'T
ABOUT TO CRY UP HERE, YA'LL. SO
I HAD TO THINK. SO WHAT
HAPPENED IS, WHEN MY MOM, I
FOUND OUT THAT MY MOM HAD
CALENDAR SI IF A LACK SIS BEFORE
SHE DID. AND I KNEW WHAT WAS
GOING ON AND THE DIAGNOSIS. AND
AT THE SAME TIME AS I'M GOING TO
COLLEGE AND LEARNING ABOUT HEAL
HEALTH CARE DISPARITIES AND
INEQUITIES I AM EXPERIENCING
THEM IN REALTIME WITH MY MOM AND
SO WE CAME TO THIS CROSS ROAD OF
WHAT IS GOING ON, EDEN AND I
SAID, IT'S ABOVE MY PAY GRADE,
MOM. WE ALWAYS HAD THIS REALLY
FUNNY RELATIONSHIP AND WHEN SHE
NEW SOMETHING WAS GOING ON AND
NOBODY WANTED TO TELL HER. NOT
EVEN HER DAUGHTER COULD COME AND
TELL HER. IT WAS REALLY HARD
FOR HER AND I REALLY THANK YOU
FOR BRINGING THIS UP BECAUSE ONE
OF THE MOST PARTS OF THIS WHOLE
STORY IS THE AMAZING PCP MY MOM
HAD AND AND A NURSE CARE
NAVIGATOR WHO WAS TREMENDOUS,
LIKE IN KEEPING HER ALIVE FOR AS
LONG AS WE DID AND KEEPING HER
AS HEALTHY AS WE COULD FOR AS
LONG AS WE DID. AND THEY CAME
TO HER BEDSIDE TO TELL HER THAT
SHE HAD CALENDAR SI FEW LACK SIS
SO IT WASN'T GOING TO BE SOME
DOCTOR THAT HAD MET HER FOR FIVE
MINUTES OR FIFTEEN MINUTES A
DAY. IT WAS GOING TO BE HER
PRIMARY CARE BUT LEADING UP TO
THAT MOMENT SHE JUST FELT LIKE
SHOW WASN'T TRUSTWORTHY THOUSAND
KNOW WHAT WAS GOING ON WITH HER
AND HER OWN BODY. SHE WOULD SEE
YOU MAY KNOW THE BODY BUT I KNOW
MY BODY AND SHE FELT SO UNWORTHY
OF BEING TOLD WHAT WIZ GOING ON
IN A WAY THAT SHE COULD
UNDERSTAND. AND I'M LUCKY I WAS
ABLE TO LIKE KIND OF HELP HER
NAVIGATE THIS CRAZY WORLD OF
MEDICINE, RIGHT?
BUT INDIVIDUALS OUT THERE, THEY
DON'T HAVE ALWAYS, LIKE A JUDY
OR A DR. ALISON TO GET THEM
THROUGH STUFF. SO, YEAH, THAT'S
PART OF THAT EXPERIENCE.
>> THANK YOU I THINK WE HAVE A
Q&A AT THE END AND I'M SURE YOU
HAVE PROBABLY MORE TO SEE DURING
THAT Q&A. IF YOU'RE ONLINE YOU
CAN SEND AN E-MAIL QUESTIONS IN
AND WE CAN VOICE THEM. NEXT I
THINK WE'RE GOING IN
ALPHABETICAL ORDER BY LAST NAME
SO I HAVE THE PRIVILEGE OF
INTRODUCING OUR NEXT SPEAKER WHO
IS A REALLY COOL NAME OF ALL
THEIR OTHER ACCOMPLISHMENTS
CHARIS AND THEY GAVE US AN EASY
WAY TO REMEMBER THEIR NAME WHICH
IS I THINK KARMA, CHARIS AND
WITH THAT I WILL INTRODUCE
CHARIS.
>> THANK YOU, GOOD MORNING,
EVERYONE, I AM IN CALIFORNIA SO
IT'S VERY EARLY FOR ME. I LIKE
KARMA. BUT IT'S ACTUALLY
CHARISMA IS WHAT I SHARED.
EITHER'S FINE. SO I THANK YOU
FOR HAVING ME HERE WITH YOU
TODAY. IT'S AN HONOR TO BE ABLE
TO SPEAK WITH YOU ALL TO JOIN A
GREAT PANEL OF PEOPLE. I AM
HERE TODAY AS SOMEONE WHO HAS
CHRONIC PAIN. I HAVE HAD
CHRONIC PAIN SINCE I WAS A KID.
SINCE BEFORE I WAS A TEENAGER.
BUT I'M ALSO HERE TODAY AS A
TRANS PERSON. AND AS SOMEONE
WHO LIVES IN FORCED POVERTY ON
SOCIAL SECURITY DISABILITY. SO
I RELY ON TWELVE HUNDRED DOLLARS
A MONTH TO LIVE. SO AND ALL OF
THOSE THINGS INTERSECT IN HOW I
APPROACH AND RECEIVE MY CARE. I
WILL SHARE A LITTLE BIT ABOUT MY
DIAGNOSIS STORY SO I WAS
ASSIGNED FEMALE AT BIRTH. MY
DAD HAD A DISEASE THAT I
COULDN'T REMEMBER THE NAME OF
BUT IT WAS A MAN'S DISEASE SO I
WASN'T GOING TO GET IT TURNS OUT
I GOT IT. BUT IT TURNED OUT
THAT MY DELAYED DIAGNOSIS WAS
OVER 13 YEARS -- PARTIALLY
BECAUSE OF THAT -- PARTLY
BECAUSE I INTERNALIZED MY PAIN.
BECAUSE WHEN YOU'RE A KID, YOU
KNOW, YOU WANT TO BE LIKE YOUR
PEERS AND MY PEERS WEREN'T
COMPLAINING ABOUT PAIN, YOU
KNOW, THEY WEREN'T SEEING OH,
I'M CRYING MYSELF TO SLEEP
BECAUSE OF MY PAIN EVERY NIGHT
AND SO I PRETENDED THAT I WAS
FINE. AND I THOUGHT THAT THAT
WAS NORMAL. YOU KNOW, CHRONIC
PAIN IS JUST THE WAY EVERYBODY
LIVES. AND I WAS ALSO AN
ATHLETE, I PLAYED COLLEGE
SOCCER. I PLAYED ALL OF THE
SPORTS GROWING UP. AND JUST MY
NORMAL WAS IT'S PAIN. IF IT'S
PAIN YOU PUSH THROUGH IT. AND
SO THAT WAS ALL THOSE
CONTRIBUTED TO A DELAY IN
DIAGNOSIS. I WAS FINALLY
DIAGNOSED AT THE AGE OF 26.
THAT WIZ MY FIRST OFFICIAL
DIAGNOSIS. AND FROM THEN YOU
KNOW I PROGRESSIVELY GOT MORE
DIAGNOSES. AS DIFFERENT PAIN
CONDITIONS JUST POPPING UP
EVERYWHERE. I CALL IT MY ABCS
OF CONDITIONS. I WAS GETTING TO
KNOW NEW PEOPLE AND FIGURING OUT
JOBS I DID NOT HAVE HEALTH CARE
AND IT JUST TURNED MY WORLD
UPSIDE DOWN. I WAS AN ATHLETE
AND THEN SUDDENLY I WAS LARGELY
BEDRIDDEN. AND I STARTED
POSTING ONLINE ABOUT WHAT I WAS
GOING THROUGH. BECAUSE I NEEDED
VALIDATION FOR WHAT I WAS GOING
THROUGH. SO I DIDN'T REALIZE
THAT SHARING MY OWN STORY
BECAUSE I NEEDED PEOPLE TO
VALIDATE ME WAS ACTUALLY GIVING
OTHER PEOPLE PERMISSION TO SHARE
THEIR STORIES WITH ME. AND SO
JUST BY TALKING ABOUT WHAT I WAS
GOING THROUGH FROM A SELFISH
STANDPOINT, I WAS BEING AN
ADVOCATE AND I WAS CATAPULTED
INTO THIS ADVOCACY STAGE. WHERE
I WAS RAISING A BUNCH OF MONEY
FOR THE ARTHRITIS FOUNDATION
JUST BY SHARING MY STORY. I WAS
INVITED TO BE -- TO DO ADVOCACY
ON CAPITOL HILL WITHIN A YEAR OF
MY DIAGNOSIS. I HAD STARTED A
SUPPORT GROUP FOR PEOPLE WITH MY
CONDITION. I HAD SPOKEN IN A
CALIFORNIA STATE HEALTH SENATE
HEALTH COMMITTEE HEARING ABOUT A
BILL. I JUST, LIKE, MY WHOLE
IDENTITY LIKE SHIFTED FROM
ATHLETE TO ADVOCATE. I FOUND A
NEW IDENTITY IN THAT. IN THE
LAST 2011. SO FOR THE LAST 12,
MY MATH IS NOT GOING TO WORK
TODAY. FOR THE LAST 12-13 YEARS
THAT HAS BEEN MY IDENTITY. SO
IT WENT FROM ATHLETE TO ADVOCATE
AND ACTIVIST. SO THAT'S LIKE MY
PERSONAL STORY BUT WHAT I'M
INVOLVED IN PROFESSIONALLY NOW
IS ELEVATING MY LIVED EXPERIENCE
INTO STUFF THAT YOU ALL MAY BE
DOING IN TERMS OF, LIKE, THE
HEAL INITIATIVE PAIN YOU'RE
ENGAGED IN PUTTING ON CMES WHICH
I'VE BEEN INVOLVED IN. PERHAPS
TURNING DOCUMENTS FROM CLINICAL
TRIALS INTO PLAIN LANGUAGE
RESOURCES. SOME OF THE OTHER
THINGS I'VE BEEN INVOLVED IN IS
CREATING THE GLOBAL HEALTHY
LIVING FOUNDATION. THE SOCIAL
MEDIA AND RESEARCH TOOLKIT OR
SMART WHICH WAS A PE COREY
FUNDING PROJECT. I HAD HELPED
LEAD FOCUS GROUP RESEARCH THAT
IS COMPLETELY PATIENT-LED FROM
BEGINNING TO END. I FEEL I'M
RAMBLING AT THIS POINT. I AM
INVOLVED ACROSS THE BOARD I
BRING A LOT WITH ME. LIKE EDEN
WAS SEEING WE ARE PEOPLE, WE ARE
HUMAN. SO I WANT TO ADD THAT I
AM A CAT PERSON. I HAVE FOUR
CATS AND I TAKE CARE OF MATERIAL
CATS IN MY BACKYARD, I AM A
GLARD GARDENER. I THINK I WILL
STOP THERE AND I CAN ANSWER ANY
QUESTIONS LATER OR EXPAND NOW.
>> THANK YOU, CHARIS, EVERY TIME
I TALK WITH YOU I LEARN
SOMETHING NEW. IT'S REALLY
GREAT TO HEAR YOU NOW. I THINK
AT DURING THE Q&A YOU'LL HAVE AN
OPPORTUNITY TO ADD ANYTHING
WE'VE MISSED. WITH THAT I WILL
INTRODUCE THE NEXT SPEAKER I
BELIEVE SONYA IS SPEAKING NEXT
>> HI, EVERYONE, I PREPARED
SHORT REMARKS BECAUSE I WAS
NERVOUS BUT THEY'RE UNDER TEN
MINUTES SO MY STORY OF CHRONIC
PAIN ACTUALLY STARTS WITH HASH
SHOW MODO'S THIGH ROY DIETS AND
IT SEEMS THAT EVERYONE I KNOW
THAT GETS THAT GETS PAIN AND
THEN I GOT RHEUMATOID ARTHRITIS
WITHIN A FEW MONTHS AND WHAT I
WANT TO TALK ABOUT IS CHRONIC
STRESS. THIS ALL HAPPENED SIX
MONTHS AFTER A DIFFICULT
DIVORCE. AFTER ENDING A NINE
YEAR RELATIONSHIP THAT HAD BEEN
ABUSIVE ON MULTIPLE LEVELS I
ENTERED INTO THE RELATIONSHIP
BECAUSE CHAOS FELT LIKE HOME.
AND I GREW UP MANY IN THE
CONTEXT OF MULTIPLE GENERATIONS
OF FAMILY ISSUES AND SUBSTANCE
ABUSE. WHILE IN THE
RELATIONSHIP I HAD A SON THE JOY
OF MY LIFE BUT WE WERE
FINANCIALLY IN SERIOUS TROUBLE
AND HE AND I WERE SO LUCKY TO BE
ON THE PUBLIC HEALTH PROGRAM IN
OHIO. AND ON WIC AND OTHER
SOCIAL PROGRAMS ALL OF WHICH
SAVED MY LIFE. IN MANY WAYS
HOWEVER I BROKE THE MOLD I HAD
ALSO GOT A TON OF THERAPY AND
TWO GRADUATE DEGREES AND AS THE
MARRIAGE WAS DEINTEGRATING AND
BECAME A DOMESTIC VIOLENCE CASE
IN GEORGIA I WORKED AS AN
ASSISTANT PROFESSOR AND
PUBLISHED MY FIRST BOOK.
IN THAT SAME YEAR I ASKED FOR A
DIVORCE AND WE HAD TO BEGIN
SUPERVISED EXCHANGES OF MY SON.
MY HUSBAND WHO WAS TRAUMATIZED
BY HIS VETERAN ALCOHOLIC FATHER
CONTINUED TO CAUSE STRESS SO IT
WAS THEN THAT NEXT FAIL THAT I
STARTED EXPERIENCING PAIN AND
EXHAUSTION. AND THE HA SHOW
MODOS WAS EASY TO IDENTIFY
BECAUSE THERE WAS A CLEAR BLOOD
TEST. MY NUMBERS WERE WAY UP SO
IT WAS EASY TO DIAGNOSIS ME WITH
RA. BUT IN TRYING TO SEEK A
SPECIALIST IN RURAL GEORGIA TO
BEGIN THE BIOLOGICS THAT MIGHT
HAVE PUT ME INTO REMISSION I
ENCOUNTERED A HAZE OF DIFFICULTY
AS MANY PEOPLE HAVE NOT BEING
ABLE TO GET MY INSURANCE TO
COVER DIAGNOSTIC PROCEDURES OR
SOMEONE JUST LOOKING AT ME AND
TELLING ME I COULDN'T HAVE RA,
JUST LOOKING AT MY FACE. AND
THAT I NEED TO REDUCE STRESS,
THAT I WAS ON TOO MANY PAIN
PILLS. MY INFLAMMATION LEVELS
WENT DOWN BUT THE PAIN I
CONTINUE TO HAVE WAS CRUSHING
AND I LEARNED THAT I ALSO HAD
NOW A DIAGNOSIS OF PTSD. I WAS
PRESCRIBED TRAUMA DOLL, A MILD
OPIOID. NEVER KNOWING THAT FOR
THE NEXT EIGHT YEARS I'D BE
TREATED ADDS THOSE I WAS DRUG
SEEKING WHICH WAS PAINFUL AS I
HAD COME THROUGH THE ADDICTIONS
OF OTHERS. SO I SWORE OFF ANY
FURTHER OPIOID USE BECAUSE IT
WAS TOO TRAUMATIC. I BELIEVE MY
BODY BROKE DOWN DUE TO STRESS.
TRIGGERING A GENETIC
PREDISPOSITION. I ENCOUNTERED
THEN SO MUCH MORE STRESS IN
TRYING TO SEEK TREATMENT. WHAT
I'M INTERESTED IN TALKING WITH
YOU TODAY IS TO TALK A LITTLE
BIT ABOUT HOW TAKING PATIENT
HISTORIES CAN INCLUDE NOT JUST A
SNAPSHOT OF THE PAIN THAT WE'VE
EXPERIENCED OVER THE PAST WEEK
OR THE PAST MONTH. BUT HOW
THERE MIGHT BE A WAY TO INCLUDE
THE STRESS THAT IS LIVED
EXPERIENCE THAT MIGHT EVEN IN
MANY CASES TOUCH OFF THIS PAIN.
I'M THE THIRD GENERATION IN MY
FAMILY THAT HAD TO CARE FOR MY
FAMILY WHILE BEING THE SOLE
BREAD WINNER. I WAS READING
ABOUT WHAT PROLONGED STRESS AND
CORTISOL DO TO THE BODY CREATING
AN ALLOSTATIC LOAD
CONCEPTUALIZED AS THE WEAR AND
TEAR OR MULTIPLE ORGANS AND
TISSUES TO THE ONGOING
ENVIRONMENTAL DEMANDS AND THAT
INCLUDES EVERYTHING FROM BLOOD
PRESSURE, CARDIOVASCULAR
SYSTEMS, TO THE PARASYMPATHETIC
NERVOUS SYSTEM AND TO MENTAL
HEALTH. I AM STILL NEGATIVE BUT
I FINALLY HAVE A GREAT
RHEUMATOLOGIST WHO SAID TO ME
WHAT NO OTHER DOCTOR SAID BEFORE
WHICH IS THAT THEY JUST DON'T
HAVE THE RIGHT TESTS YET TO SEE
WHAT'S CAUSING MY PAIN. HAPPILY
I'M NOW A TENURED PROFESSOR IN
CONNECTICUT AND ENDED UP WITH A
GREAT PARTNER AND BECAUSE I LIKE
A CHALLENGE I THEN GOT COVID
THAT TURNED INTO LONG COVID IN
MARCH 2020 SO I'M AN EARLY
ADOPTER. SO I JUST WANT TO
CLOSE WITH THE FACT THAT I THEN
BECAME PART OF WHAT I THINK IS A
MODEL FOR COLLABORATION BETWEEN
PATIENT RESEARCHERS AND THE
MEDICAL COMMUNITY I WAS PART OF
THE VAST PATIENT LED RESEARCH
NETWORK THAT CREATED LONG COVID.
WE SUMMONED IT FROM OUR
EXPERIENCE IN REALTIME. WHEN I
WAS TOLD MY RACING HEART WAS
PTSD I KNEW THAT WASN'T TRUE
BECAUSE I KNEW WHAT MY PTSD FELT
LIKE AND EVENTUALLY I WOULD
LEARN THAT MY BLOOD WAS PUMPING
TOO HARD AND IT GAVE ME AN
AORTIC ANEURYSM. WE RESEARCHED
DEEPLY, TRADED INFORMATION IN
SLACK GROUPS COMING UP WITH OUR
OWN TREATMENT PROTOCOLS IT TOOK
ME A YEAR TO REGAIN
FUNCTIONALITY FROM LONG COVID
BUT I WORKED THROUGH ALL OF IT.
I AM NONBINARY AND I AM NOW
WATCHING PATIENTS TRY TO PUT
TOGETHER WHY TRANS AND NONBINARY
PEOPLE HAVE COLLECTED A HIGHER
INCIDENCE OF LONG COVID AND WHY
OUR CONNECTIVE TISSUE SEEMS
WEAKER MAYBE BECAUSE WE'RE
SOCIALLY VULNERABLE IT ALL MAKES
SENSE IN A WAY THAT WE JUST NEED
MEDICINE TO PIT -- PUT A NAME
ON AND SADLY I WAS CONFIRMED AND
I KNEW MY BODY WAS WORKING SO
HARD.
I AM INTERESTED -- I KNOW
THERE'S CURRENT RESEARCH GOING
ON ON LOOKING INTO NOT JUST
INTERLEUKIN 6 BUT A BUNCH OF THE
DIFFERENT INTERLEUKINS TO TRY TO
SEE WHAT MIGHT ALIGN TO RA.
AND I AM INTERESTED FINALLY IAL
HIDING BEHIND THESE SOURCES OF
INFLAMMATION AND HOW WE ARE
UNITED ACROSS OUR CONDITIONS,
ALL OF THE FOLKS WHO ARE THE --
THE WONDERFUL FOLKS ON THIS
PANEL. I HOPE THAT NO -- OTHER
DOCTOR EVER TELLS ME TO REDUCE
STRESS. BECAUSE STRESS IS
SOCIALLY CREATED AND OFTEN PUT
ON US AS CAREGIVERS AND -- AND
OFTENTIMES MAINSTAYS OF OUR
FAMILIES. I ASK YOU TO THINK OF
STRESS AS PART OF OUR HISTORIES
AND EMBEDDED NOT IN OUR MINDS
BUT IN OUR BODIES. THANK YOU SO
MUCH.
>> THANK YOU. OUR NEXT SPEAKER
IS SHAREE.
>> HELLO. A LITTLE CLOSER.
THERE'S A FEW THINGS I DID NOT
WANT TO FORGET SO I DID WRITE MY
DOWN BUT THANK YOU SO MUCH FOR
BEING HERE AND LISTENING. IN
2022, I BRITTANY HIGH TOWER A
22-YEAR-OLD IN HOUSTON, TEXAS
WAS GIVEN THE OPTION OF LEAVING
IN PAIN OR BE ARRESTED FOR
TRESPASSING. DAYS LATER SHE
DIED FOR A CHOICE THAT SHE
SHOULD HAVE NEVER BEEN GIVEN
THIS TRIGGERED A MEMORY OF MINE
AT AGE 17.
A TYPICAL ED VISIT SHAPED MY
ENTIRE JOURNEY. I HAD ACUTE
SYNDR
SYNDROME. I WAS PLACED ON A
STRETCHER, TUCKED IN A CORNER OF
A HALL WEI FORGOTTEN ABOUT. I
WAS TOLD BY A NURSE TO SHIT UP
WHEN I WAS SCR-- TOLD TO SHUT U
THIS IS FREQUENT WITH PATIENTS
OF SICKLE CELL WE CALL EACH
OTHER WARRIORS AS MUCH AS IT
DESCRIBES OUR RESILIENCE ALSO
REMINDS US OF THE NEVER ENDING
FIGHTS WE TAKE PART IN. WE
FIGHT THIS BEAST OF AN ILLNESS
CALL SICKLE CELL AND A -- ARE
ATTACHED AS DRUG SEEKERS.
IN MY MOST VULNERABLE TIME WITH
A PAIN SCALE OF 10 MY THOUGHT
WAS NOT WHICH HOSPITAL AM I
GOING TO. IT'S HOW QUICK CAN I
SHOWER AND GROOM MYSELF SO I
DON'T LOOK LIKE THE ADDICT THEY
ALREADY THINK I AM. EVEN THE
MAINSTREAM MEDIA HAS TAKEN
SICKLE CELL AS A TOPIC MORE --
TOPIC FOR COMEDIC RELIEF.
I HAVE TAKEN EVERY UNEXPLAINED
LAB RESULT AND EACH BIAS I HAVE
MET WITH AND ORGANICALLY BECAME
AN ADVOCATE FOR MYSELF AND MY
COMMUNITY. IN MY WORLD, MY PAIN
HAS TO BE VALIDATED BEFORE IT'S
RELIEVED AND AS MUCH AS IT IS A
PHYSICAL PAIN THERE IS A
WELL-ESTABLISHED MENTAL PAIN
THAT ACCOMPANIES IT. SINCE THE
SYMPOSIUM IS FOCUSED ON SEX AND
GENDER IT'S IMPORTANT TO NOTE
WHAT I AM NOW SEEING AS A
PATIENT NAVIGATOR. YOUNG MALES
CHOOSE TO STAY HOME, DISENGAGE
FROM SOCIAL ACTIVITIES AND IF
HOME TUMORING IS NOT AVAILABLE
TODAY DROP OUT OF SCHOOL.
FEMALES EXPERIENCING MENSTRUAL
TRIGGER PAINS THAT ARE
HEIGHTENED. WE MUST DISCONTINUE
A LIFE SAVING DRUG IF WE PLAN TO
HAVE CHILDREN.
I ONCE HEARD THAT SICKLE CELL
PAIN IS A WINDOW TO ALL PAIN
BECAUSE OF ITS COMPLEXITIES BUT
EVEN AS THE MOST COMMON INHE
INHERITED PAIN IN THE U.S. I
HEAR DOCTORS AND PATIENTS SEE
HOW LONG HAVE I HAD SICKLE CELL.
IF IT TOOK TIME TO HAVE SOMEONE.
TODAY I GIVE YOU ALL WITH YOUR
BRILLIANCE, AND INTEREST
PERMISSION TO HELP CHANGE THE
NARRATIVE OF SICKLE CELL, THANK
YOU.
>> THANK YOU. I THINK WE NOW
FOR QUESTIONS FOR THE PANELISTS
AND MORE OF A DISCUSSION FROM
THE PANELISTS. EACH TIME WE
TALK THESE SUBJECT MATTER
EXPERTS HAVE MORE INTERESTING
QUESTIONS THAN I THINK WE HAVE.
SO PLEASE DO SPEAKERS, JUMP IN
AND SHARE ANYTHING YOU DIDN'T
SHARE OR QUESTIONS. CHARIS I
THINK HAS UNMUTED. IS THAT
RIGHT? OH, SORRY, IT LOOKED
LIKE FROM THE WAY YOU POPPED UP
THAT YOU UNMUTED. SO IF --
WHILE THE AUDIENCE HAS SOME TIME
TO COME TO THE MIC, IF YOU HAVE
A QUESTION, I'LL START OUT WITH
A FIRST QUESTION. YOU'RE ALL
HERE BECAUSE OF YOUR EXPERIENCE
WITH PAIN. YOU DECIDED TO USE
YOUR PERSONAL STORIES OF ONE
PIECE OF YOUR ADVOCACY FOR YOUR
COMMUNITIES SO IT'D BE NICE TO
HEAR A LITTLE BIT ABOUT HOW YOU
FEEL ABOUT THAT CHOICE. IS IT
DRA
DRAINING? IS IT EMPOWERING?
WHAT SHOULD RESEARCHERS BE AWARE
OF WHEN DOING WHAT YOU'RE DOING
AND LEVERAGING YOUR EXPERIENCES
AT THE SCIENTIFIC TABLE?
>> I GUESS I COULD SHARE. I WAS
GETTING READY TO LOG ONTO ZOOM
AND I WAS SO NERVOUS AND I
REALIZED THAT WHAT I WAS REALLY
NERVOUS ABOUT WAS, LIKE, I
JUST -- NORMALLY DON'T EVEN
CHOOSE TO SHARE MY -- ANYTHING
OF MY STORY WITH DOCTORS WHO ARE
TREATING ME. IT'S REALLY AN
AMAZING OPPORTUNITY TO BE WITH
YOU IN THIS SITUATION WHERE WE
CAN. BUT I HAVE, YOU KNOW, I AM
A PUBLIC SPEAKER FOR MY LIVING
AND THIS MAKES -- THIS MADE ME
VERY NERVOUS BECAUSE IT'S A
DIFFERENT KIND OF PUBLIC
SPEAKING. I THINK IT'S SO --
IT'S HIGHLY CHARGED SO YEAH TO
ANSWER YOUR QUESTION, IT'S A
GREAT OPPORTUNITY BUT AT THE
SAME TIME IT'S AN INTERFACE
WHERE THERE'S BEEN SO MUCH
STRESS IN MY LIFE SO I DO IT
DESPITE THAT ANXIETY.
>> I CAN JUMP IN TOO. I AM VERY
LUCKY BECAUSE I HAVE AMAZING
MENTOR, ASHLEY AND I ALSO HAVE
AN AMAZING MENTOR AND I GET TO
WORK WITH JESS, AWESOME AND WHAT
I LEARNED ABOUT SHARING MY LIVED
EXPERIENCE IN THIS FIELD IS THAT
SOMETIMES YOU CAN ALMOST
ACCIDENTLY BE TOKENIZED AND
THAT'S NOT BASED ON A SKIN
COLOR, USING THE STORY AS A
TOKEN. SOMETIMES CAN FEEL
REALLY BAD. SO I JUST HOPE
THAT, YOU KNOW, AS INDIVIDUALS
WHO ARE -- FOR MYSELF, TRYING TO
BECOME A RESEARCHER, I HOPE THAT
WHEN YOU'RE LEARNING FROM THESE
INDIVIDUALS WITH LIVED
EXPERIENCE THAT YOU ARE DOING
WHAT MY MENTOR DOES AND TRIES TO
KIND OF GIVE BACK TO YOUR
MENTEES. MAKE SURE THAT THESE
PEOPLE WITH LIVED EXPERIENCE ARE
LIFTED UP AND NOT JUST
TOKENIZED. SO THAT'S ALL.
>> I'LL ADD THAT I EXPERIENCED
BOTH. THERE'S A FULFILLMENT
THAT COMES WITH I'M ABLE TO NOW
LITERALLY HELP NAVIGATE THESE
FAMILIES AND CHILDREN LIVING
WITH SICKLE CELL BECAUSE I'VE
DONE IT. BUT IT ALSO CAN BE
DRAINING BECAUSE EVEN IF I CLOCK
OUT I STILL HAVE SICKLE CELL.
I'M STILL EXPERIENCING WHAT THEY
WILL SO IF I DON'T MAKE IT
BETTER FOR MYSELF, THAT MEANS
THE ONES TO COME ARE JUST GOING
TO FOLLOW THE PATTERN THAT I'VE
HAD TO UNFORTUNATELY LIVE
THROUGH. SO, I EXPERIENCED BOTH
FULFILLMENT AND TRAINING
SOMETIMES.
>> I'LL ADD. THIS IS CHARIS, I
AM EXHAUSTED. I'LL JUST SEE IT.
I MEAN, I WANT TO BRING IN THE
FACT THAT ALL FOUR OF US ON THIS
PANEL ARE DEALING WITH OUR OWN
LIVED EXPERIENCE WHILE
ADVOCATING. WE OFTEN BARELY
HAVE THE ENERGY TO DEAL WITH OUR
OWN PAIN AND PAIN IMPACTS EVERY
SINGLE ASPECT OF LIFE. AND IT'S
GETTING HARDER TO ACCESS PAIN
CARE THAT'S EQUITABLE WHILE
WE'RE ADVOCATING. SO
PERSONALLY, I AM
IMMUNOCOMPROMISED I CAN'T
EQUITABLY ACCESS HEALTH CARE AT
ALL RIGHT NOW BECAUSE THERE ARE
NO MASKS IN HEALTH CARE SETTINGS
ANYMORE MUCH LESS FEEL
COMFORTABLE ADVOCATING FOR
OPIOID ACCESS BECAUSE THAT IS A
MEDICATION I RELY ON. PLUS I'M
TRANS. SO NAVIGATING WHEN I ASK
MY DOCTORS TO PLEASE USE MY
CORRECT PRONOUNS AND, YOU KNOW,
STOP MISGENDERING ME TO MY FACE
OR IN MY CHART. ALL OF THESE
THINGS, LIKE, INTERACT WITH EACH
OTHER AND THEN WE, I FEEL THE
RESPONSIBILITY FOR MY COMMUNITY
TO SHOW UP FOR THINGS LIKE THIS
AND IT'S REALLY IMPORTANT TO ME.
I AM REALLY GLAD TO DO IT BUT I
DON'T WANT IT TO BE THOUGHT OF
AS THIS IS THE JOB WE SHOW UP
FOR AND IT'S COMPLETELY SEPARATE
FROM THE REST OF OUR LIVES
BECAUSE IT'S NOT. LIKE WE'RE
SHOWING UP FOR THIS. WE'RE
GETTING PAID TO BE HERE. BUT
WE'RE ALSO LIVING IT. LIKE OUR
LIVES ARE OUR WORK AND OUR WORK
IS OUR LIFE. WE CAN'T HAVE A
VACATION FROM THAT AND SO I
THINK THINKING ABOUT US HERE
TODAY AS PROFESSIONALS,
ALONGSIDE WITH YOU, WE ARE YOUR
PEERS. BUT WE ALSO DON'T LEAVE
THIS WORK. WHEN WE LEAVE TODAY.
WE LIVE IT. AND SO WE'RE
EXHAUSTED. WELL, I'M EXHAUSTED,
I CAN'T SPEAK FOR EVERYONE ELSE.
ANYWAY, I JUST WANTED TO SHARE
THAT.
>> THANKS, CHARIS, I HAVE A
QUESTION. SPECIFICALLY FOR YOU
BECAUSE IT WAS KIND OF
HIGHLIGHTED IN YOUR BIO. BUT I
THINK OTHERS PROBABLY MAY BE
ABLE TO JUMP IN AND ANSWER TOO.
SO IN YOUR BIO IT HIGHLIGHTS THE
YOUR WORK WITH MULTIPLY
MARGINALIZED DISABLED PEOPLE AS
PARTNERS OF RESEARCH AND I
WONDER IF THERE'S ANYTHING THAT
YOU CAN SHARE OR TALK ABOUT THAT
RESEARCHERS NEED TO KNOW TO WORK
WITH MULTIPLE MARGINALIZED
DISABLED PEOPLE AS PARTNERS IN
RESEARCH TO MAKE THE SCIENCE
BETTER, MORE ACCURATE OR MORE
IMPACTFUL.
>> YEAH. IT'S A REALLY GOOD
QUESTION. AND I COULD GO ALL
DAY ON THIS BUT I WILL JUST PICK
ONE, LIKE CONCRETE TANGIBLE
THING. AND THAT'S THAT -- SO --
I SOMETIMES WILL GIVE FEEDBACK
ON PLAIN LANGUAGE CLINICAL TRIAL
SUMMARIES. AND I AM ALWAYS
REMINDED THAT GENDER, FOR
CLINICAL TRIALS IS STILL BINARY.
AND SO AS A TRANS PERSON WHO IS
NONBINARY WHEN I AM GIVING --
WHEN I'M LOOKING AT THESE
CLINICAL TRIAL SUMMARY RESULTS
I'M REMIND THAT HAD RESEARCH IS
STILL BINARY WHEN IT COMES TO
GATHERING DATA ABOUT GENDER.
WHICH MEANS I AM NOT GATHERED.
MY DATA IS NOT GATHERED. SO
THERE -- AS SONYA WILL PROBABLY
BE ABLE TO BACK ME UP BECAUSE
WE'VE TALKED ABOUT THIS WITH OUR
INVOLVEMENT ON THE NATIONAL PAIN
ADVOCACY COUNCIL THERE IS SO
LITTLE RESEARCH THAT INCLUDES
TRANS DATA. THAT, LIKE, WHERE
DO I FIT? YOU KNOW. SO I THINK
IT IS ABSOLUTELY VITAL FOR
PEOPLE WHO ARE MULTIPLY
MARGINALIZED WHO ARE TRANS AND
DISABLED, WHO ARE BLACK AND
DISABLED, WHO ARE IMPOVERISHED
AND DISABLED AND ALL OF THE
ABOVE MIXED TOGETHER ARE
INVOLVED BECAUSE THESE SEEMINGLY
SMALL DETAILS ARE ACTUALLY
REALLY IMPORTANT BECAUSE THEY
IMPACT US DIRECTLY. I DON'T
WANT TO BE DISINCLUDED FROM
RESEARCH AND SO I'M HOPING WE
CAN COMPLETELY REWRITE THE
SYSTEM AND FIX THAT AND I LOOK
FORWARD TO HEARING WHAT ANY OF
THE OTHER PANELISTS HAVE TO SEE
ABOUT THAT -- HAVE TO SAY ABOUT
THAT.
>> I CAN ACTUALLY JUMP IN ON
THAT TOO.
A LOT OF WORK I DO IS COMMUNITY
BASED PARTICIPATORY RESEARCH
WHERE WE PARTNER WITH
COMMUNITIES. SAME THING WITH
HEAL CONNECTIONS. THESE PEOPLE
ARE PARTNERS AND SOMETIMES WE
FORGET THAT IN THE RESEARCH
WORLD. THAT WHILE WE WANT TO
INCLUDE THE VOICE OF LIVED
EXPERIENCE AND INCLUDE THESE
THINGS WE HAVE TO REMEMBER
PARTNERSHIP IS KEY. BECAUSE
THERE'S BEEN A LOT OF --
OBVIOUSLY WE ALL KNOW THERE'S
BEEN A LOT OF TRUST ISSUES WITH
PARTICULAR COMMUNITIES. AND SO
IF YOU START TO VIEW PEOPLE AS
HUMANS AND THEIR PARTNERS HOW
CAN YOU BE INEQUITABLE IS KIND
OF HOW I FEEL.
>> THANK YOU TO ALL OF YOU FOR
SHARING YOUR EXPERIENCES. I
REALLY APPRECIATE IT. WE KNOW
THAT A NUMBER OF PAIN
RESEARCHERS ARE REALLY WANTING
TO INCLUDE PEOPLE WITH LIVED
EXPERIENCE. THROUGHOUT THE
RESEARCH PROCESS. AND SO BASED
ON YOUR EXPERIENCES WORKING WITH
RESEARCHERS, I WAS HOPING THAT
MAYBE YOU COULD GIVE SOME ADVICE
ON WHAT ARE SOME OF THE
ENGAGEMENTS THAT HAVE GONE WELL.
WHAT ARE SOME THINGS THAT
HAVEN'T GONE WELL. SO WHAT ARE
SOME CONCRETE ADVICE THAT YOU
CAN GIVE TO PEOPLE THAT ARE
WANTING TO INCORPORATE PEOPLE
WITH LIVED EXPERIENCE IN THEIR
RESEARCH STUDIES MOVING FORWARD?
THANK YOU.
>> I, I'M SORRY, I COULD JUMP IN
AGAIN JUST BECAUSE I DO A LOT OF
THIS IN VPR I KNOW ENGAGEMENT IS
IMPORTANT AND IT'S MEETING THE
INDIVIDUALS WHERE THEY ARE IS
CRITICAL. ALSO ASKING
QUESTIONS, WHAT THEY NEED. WHAT
THEY WANT. KIND OF WHAT THEY
NEED OUT OF THE -- LIKE
PARTNERSHIP, RIGHT?
PARTNERSHIP'S NOT ONE SIDED. SO
IF YOU WANT TO GENUINELY
ACTIVELY PAIR WITH INDIVIDUALS
IN THE COMMUNITY, JUST REALLY
BEING AUTHENTIC AND GOING BEYOND
WHAT YOU WANT OUT OF IT. MAKING
SURE IT'S -- THERE'S RECIPROCITY
IN THAT PROCESS. AND I JUST
WANT TO SEE ONE MORE THING.
JESS HAS THIS GREAT THING ABOUT
SEVEN TOUCHES AND IT'S JUST
LIKE, YOU KNOW, ONCE IN AWHILE
REACHING OUT, ASKING HOW YOU'RE
DOING, AGAIN, BUILDING TRY
PARTNERSH
PARTNERSHIP.
>> I'LL ADD A FEW THINGS. I
APPRECIATED GETTING THAT FROM
THE NATIONAL PAIN AND ADVOCACY
COUNCIL AND I HAVE APPRECIATED
SPECIFICALLY WHERE, YOU KNOW, IN
SIGNING ONTO GIVE COMMENTS TO
HAVE EVERYTHING VERY CLEAR,
LIKE, YOU KNOW, WHAT WE'RE
ASKING YOU TO DO, WHEN WE MIGHT
WANT YOUR COMMENTS BECAUSE WITH
EVERYTHING ELSE PLUS THE PAIN I
GET A LITTLED A LED AND THAT'S
REALLY NICE AND CLEAR.
AND AS WAS JUST SHARED, I REALLY
APPRECIATED ON A BIG STUDY THAT
I PARTICIPATED IN RECENTLY TO BE
ASKED AT SORT OF MULTIPLE POINTS
IS THERE ANYTHING WE'RE MISSING?
IS THERE ANYTHING YOU NOTICE
THAT HAD HASN'T BEEN CAPTURED
IN, YOU KNOW, THE QUESTIONS
WE'VE ASKED ABOVE? WHAT ARE
YOUR CONCERNS OR ANYTHING YOU'D
LIKE TO EXPAND? THAT'S BEEN
SUPER HELPFUL AND THEN, YOU
KNOW, ANY KIND OF COMPENSATION
IS SUPER HELPFUL ESPECIALLY, YOU
KNOW, EVEN IF IT'S LIKE, YOU
KNOW, A SMALL AMAZON GIFT CARD
OR ANYTHING LIKE THAT. LIKE,
IT'S JUST -- IT'S IT GOES A LONG
WAY COMMUNICATING THAT OUR TIME
IS WORTHWHILE AND YOU KNOW JUST
HELPS A LITTLE BIT.
>> I'LL JUST ADD FOUR SHORT
THINGS TO ADD ONTO WHAT SONYA
SAID, PAY US, PAY US PAY US. .
AND I WILL AND I WILL SEE PLEASE
PAY US EVENING WIT BLICHLT EVEN
IF WE MAY NOT HAVE LETTERS
BEHIND OUR NAMES THAT MEANS WE
HAVE LIVED EXPERIENCE. THAT
MEANS WE HAVE STUFF YOU DON'T
HAVE NECESSARILY. WE ARE
PROFESSORS, WE ARE IN THE ROOM
AND SECOND POINT, PUT US IN THE
PAPER. PUT OUR NAMES ON THE
PAPER. WE NEED TO BE PUBLISHED
IF WE'RE PART OF IT. THE THIRD
AND FOURTH ARE KIND OF PAIRED.
SO WE'RE DISABLED A LOT OF US
ARE IMMUNOCOMPROMISED, MAKE
VIRTUAL AN OPTION, DON'T REMOVE
THAT FROM US. AND PAIR WITH
THAT, THIS IS A REALLY UNIQUE
POINT BUT CONGRESS RECENTLY
DEFUNDED THE AFFORDABLE
CONNECTIVITY PROGRAM AND SO I
MIGHT LOSE INTERNET AND SO
PAIRED WITH HYBRIDIZATION,
KEEPING HYBRIDIZATION PERHAPS
BUILD IN SOME SORT OF WAY TO
COMPENSATE WHAT COSTS WILL BE
FOR ACCESSING THAT. SO, AND
PEOPLE ARE WELCOME TO REACH OUT
TO ME IF YOU WANT TO CHAT ABOUT
DIFFERENT IDEAS FOR THAT.
>> THANK YOU, I'LL DEFINITELY
REACH OUT. THAT'S REALLY
INTERESTING. I THINK WE HAVE
THE NEXT QUESTION.
>> SURE, YEAH, I JUST WANTED TO
BRIEFLY SEE THANK YOU FOR HAVING
THE COURAGE TO SHARE THE STORIES
AND TRUSTING US TO LISTEN TO
THEM. I WANTED TO ASK, FOR
EVERYBODY ON THE PANEL,
EVERYBODY SHARED PRETTY POIGNANT
EXPERIENCES INTERACTING WITH THE
HEALTH CARE SYSTEM. AND I JUST
WANTED TO ASK IF YOU COULD THINK
OF MAYBE ONE OR A FEW THINGS YOU
WISH SOMEBODY WOULD HAVE ASKED
YOU ALONG THE WAY. WHILE YOU'RE
INTERACTING WITH HEALTH CARE.
>> BUILDING THOSE RELATIONSHIPS
WITH PHYSICIANS WITH HEALTH CARE
WORKERS IT'S MORE WHAT I WISH
THEY WOULD SAY. I WISH THEY
WOULD SAY I DON'T KNOW. I WISH
THEY WOULD SAY LET ME GO ASK
SOMEONE WHO DOES. OR I NEED
HELP. BECAUSE IN THOSE MOMENTS
WHERE THEY'RE GUESSING OR TRYING
TO PROVE A POINT, FIGURING OUT
SICKLE CELL OR WHAT I MAY NEED,
THOSE ARE THE MOMENTS WHERE I
HAVE COME CLOSE TO DEATH OR LIKE
I JUST HAD A BAD EXPERIENCE SO I
JUST WISH -- IT IS OKAY TO SEE
YOU DON'T KNOW AND TO FIND THE
SOURCE OF SOMEONE WHO DOES KNOW
OF MY ILL NENESILLNESS.
>> I HAD ADDED THIS WHEN I SPOKE
BUT JUST TO ASK, ARE THERE --
HAVE THERE BE MAJOR SOURCES OF
FAMILY STRESS IN THE HISTORY OF,
YOU KNOW, SINCE ONSET OR BEFORE
ONSET. SOME WAY TO CAPTURE THE
KIND OF STRESS THAT CAN'T BE
REDUCED. AND I MEAN, I JUST --
I ALSO JUST HAD MY WONDERFUL NEW
RHEUMATOLOGIST ASK ME, LIKE,
WHAT HAVE YOU NOTICED ABOUT THE
PROGRESSION OF YOUR CONDITION?
WHICH SORT OF BLEW ME AWAY BUT
THAT'S AMAZING. YOU KNOW, GOING
ALONG WITH CHARIS'S POINT ABOUT,
YOU KNOW, THE LIVED EXPERIENCE
WE'VE ACCUMULATED.
>> I LOVE YOUR POINT ABOUT
SAYING I DON'T KNOW. I LOVE
SAYING I DON'T KNOW. BECAUSE
YOU DON'T KNOW IT DOESN'T MEAN
WE'RE NOT HAVING REAL PROBLEMS.
THAT'S REAL IMPORTANT IF YOU SAY
I DON'T KNOW HOW CAN YOU
DISCREDIT I DON'T KNOW.
>> NEXT QUESTION.
>> YEAH, HI, I JUST WANT TO
FIRST OF ALL THANK EVERYONE FROM
THE PANEL FOR BEING SO AUTHENTIC
AND TELLING YOUR STORIES. I
KNOW EDEN BECAUSE SHE'S DONE A
GREAT JOB ON THE HEAL PANEL THAT
I AM INCLUDED ON. SO THAT'S
TERRIFIC AND YOUR POEM WAS
BEAUTIFUL AND SONYA, YOU
ACTUALLY SPOKE AT MY PAIN GROUP
I'VE BEEN RUNNING FOR 24 YEARS
WITH THE AMAZING BOOK THAT YOU
WROTE THAT PEOPLE REALLY
ENJOYED. BUT I WANTED TO SAY
I'M A PERSON WITH PAIN. I LIVE
WITH BACK PAIN, I WAS CRUSHED IN
AN ACCIDENT. I'M ALSO THE
POLICY DIRECTOR FOR THE U.S.
PAIN FOUNDATION AND ONE OF THE
THINGS TO ANSWER THE QUESTION
ABOUT WHAT RESEARCHERS COULD DO.
IS UNDERSTAND THAT PEOPLE WITH
PAIN HAVE A LOT OF PHYSICAL NEED
AND WHEN I WENT TO THE HEAL
SCIENTIFIC CONFERENCE I SPOKE UP
TO SAY I CAN'T SIT UP FOR MORE
THAN AN HOUR OR DO ANYTHING FOR
MORE THAN AN HOUR AND KNEAD
NEED TO LAY DOWN AND GOT ME A
SOFA IN THE BACK BUT THERE WERE
PEOPLE WITH PAIN THAT I SAW
STRUGGLING AND NO ONE ASKED WHAT
COULD BE DONE TO ACCOMMODATE ALL
THOSE PEOPLE. WHEN U.S. PAIN
HAS A CONFERENCE, WE HAVE, LIKE
15 BEDS AND COTS OUT FOR PEOPLE
WITH PAIN. WE HAVE MORE BREAKS.
SO PEOPLE WITH PAIN CAN TAKE
MORE BREAKS. EVERYONE THAT IS
LIVING WITH PAIN, NO MATTER WHAT
THEIR CONDITION HAS LIMITS AND
THEY JUST NEED TO LEARN AS ONE
OF THE WAYS TO MANAGE THEIR PAIN
HOW TO LIVE WITHIN THOSE LIMITS.
AND WE TELL PEOPLE THAT ALL THE
TIME. IT MIGHT BE THAT IF YOU
HAVE MIGRAINES, FOR EXAMPLE, TOO
MUCH NOISE AND TOO MANY LIGHTS.
SO IF PEOPLE CAME TO A
CONFERENCE WITH MIGRAINE YOU
WOULDN'T HAVE THESE BRIGHT
SPOTLIGHTS HERE IN THIS ROOM AND
IF YOU AS RESEARCHERS WERE
TRYING TO ACCOMMODATE FOR PEOPLE
WITH PAIN IT WOULDN'T BE HAVING
THIS CONFERENCE IN THIS
AUDITORIUM BECAUSE THE ONLY
PLACE I CAN LAY DOWN AND STILL
STAY IN THE AUDITORIUM IS IN THE
BACK WHERE THEY'VE TAKEN OUT TWO
SEATS. AND SO I'VE BEEN COMING
TO THIS CONFERENCE FOR AT LEAST
FIFTEEN YEARS, LINDA KNOWS, I
HAVE THAT LITTLE SPOT BACK
THERE. BUT IF ANYONE ELSE HAD
TO LAY DOWN, THERE WOULD BE
NOWHERE IN THIS ROOM FOR THEM TO
LAY DOWN AND STILL PARTICIPATE
SO IN IF YOU WANT TO BE
INCLUSIVE AS RESEARCHERS.
YOU REALLY NEED TO PROVIDE MORE
ACCOMMODATIONS FOR PEOPLE WITH
PAIN. A WHEELCHAIR, PEOPLE GET,
PEOPLE DON'T GET WHEN I NEED TO
LAY DOWN AND I GET YELLED OUT
FOR PUTTING MY MAT ON THE FLOOR
SOMEWHERE. AND SO THAT IS --
IT'S INCREDIBLY EMBARRASSING TO
DO THE THINGS WE NEED TO DO TO
LAY DOWN ON COTS BUT IN ORDER TO
PARTICIPATE WE NEED TO DO THAT.
ONE THING THAT'S GREAT IS HAVING
ZOOM. BECAUSE TRAVELING FOR
SOME PEOPLE WITH PAIN IS
INCREDIBLY DIFFICULT AND IT MAY
HAVE MADE IT EASIER FOR SONYA
AND CHARIS TO BE HERE BUT THOSE
ARE I THINK REALLY IMPORTANT
THINGS. AND THEN IN ANSWER TO
THE QUESTION THAT THE PERSON
JUST SAID BEFORE THAT WAS UP
HERE AND SAID HOW CAN DOCTORS BE
MORE, YOU KNOW, ACCOMMODATING
FOR PEOPLE WITH PAIN? ONLY ONE
DOCTOR IN MY ENTIRE LIFE WHO
REALLY HELPED ME THE MOST SAID
TO ME, YOU HAVE CHRONIC PAIN,
THERE'S NO CURE. I WILL HELP
YOU MANAGE IT. I WILL BE A
PARTNER IN YOU WITH HELPING YOU
MANAGE IT. PEOPLE IN PAIN FEEL
SO ALONE IN THEIR PAIN. BECAUSE
THEY'VE GONE FROM DOCTOR TO
DOCTOR TO DOCTOR. THEY GET
DISMISSED. THEY GET CALLED DRUG
SEEKER, THEY SEE YOU'RE FAKING
IT IF THEY CAN'T HELP BUT THE
ONE THING THEY CAN DO EVEN IF
THEY DON'T HAVE THE ANSWERS IS
PARTNER WITH THE PERSON, SUPPORT
THEM. AND WHEN THEY HAVE YOU
TRY THINGS. TRY HYDROTHERAPY,
TRY THAT AND IF IT WORKS LET US
KNOW. SOME WILL DISMISS THEM.
IF IT DOESN'T WORK. I CAN'T
HELP YOU. BUT JUST BEING THERE
AS A PARTNER, MEANS A LOT TO
PEOPLE WITH PAIN. SO SORRY FOR
THE LONG REMARKS BUT I WANTED TO
ANSWER THOSE QUESTIONS.
>> THANK YOU, CINDY.
>> BEFORE I GO TO THE NEXT
QUESTION I WANTED TO ASK THE
PANELISTS IF YOU HAD ANYTHING TO
ADD TO THAT. OKAY. I'LL GO TO
THE NEXT QUESTION.
>> THANK YOU SO MUCH TO ALL OF
YOU FOR YOUR INFORMATIVE AND
INSPIRING COMMENTS. I HAVE A
SPECIFIC QUESTION FOR SONYA.
I -- YOU DESCRIBE VERY
ELOQUENTLY THE IMPORTANT
RELATIONSHIP BETWEEN STRESS AND
PAIN. AND ALSO YOU SAID
SOMETHING I THINK THAT IS
IMPORTANT FOR US TO HEAR YOU
SAID YOU HOPE NOBODY EVER ASKS
YOU TO REDUCE YOUR STRESS. NOW
I AM CURIOUS, AND WONDERING
ABOUT YOUR ADVICE. AS TO WHAT
WOULD BE HELPFUL FOR EITHER
PROVIDERS OR RESEARCHERS TO ASK
ABOUT STRESS, FOR EXAMPLE, WOULD
IT BE HELPFUL TO SAY -- TO ASK
HOW YOU MANAGE YOUR STRESS?
WHAT OTHER QUESTIONS YOU THINK
WE SHOULD BE ASKING?
>> I THINK, THANK YOU, SO MUCH
FOR ASKING THAT QUESTION. YEAH,
WELL, I WILL START BY JUST
SEEING WHEN A DOCTOR TELLS ME I
HAVE TO REDUCE STRESS USUALLY I
JUST WALK AWAY AND LAUGH
BECAUSE, YOU KNOW, IF IT WAS
THAT EASY I THINK I WOULD HAVE
TRIED IT BEFORE NOW BUT I THINK
WHEN I'VE BEEN ASKED THAT, IT'S
SORT OF IMPLIES THAT IT'S A
SIMPLE MATTER OF ADDING OR
TAKING SOMETHING AWAY OR
BUILDING TIME FOR MYSELF DURING
THE DAY. I THINK A LOT OF
STRESS BUILT UPON INDIVIDUAL
BODIES IS SYSTEMIC. SO, YEAH,
THERE'S A WAY IN WHICH I THINK
IF WE TRY TO MAKE IT JUST AN
INDIVIDUAL PROBLEM WE'RE MISSING
WHERE A LOT OF IT COMES FROM
WHICH IS, YOU KNOW, RACE AND
GENDER, INEQUALITY, OTHER FORMS
OF OPPRESSION, ECONOMIC STRESS.
SO I MEAN, I THINK IT MIGHT HELP
TO JUST SAY ARE THERE SOURCES OF
STRESS IN YOUR LIFE THAT YOU,
YOU KNOW, THAT HAVE IMPACTED
YOUR QUALITY OF LIFE? AND SORT
OF, YOU KNOW, LEAVE THE QUESTION
OF HOW WE MIGHT GET RID OF THEM
OR HOW WE MIGHT MANAGE THEM TO,
LIKE, FURTHER IN THE
RELATIONSHIP. I THINK IT CAN BE
OVERWHELMING ON TOP OF HAVING A
MEDICAL ILLNESS TO HAVE A DOCTOR
TELL YOU, YOU KNOW, TAKE ALL
THESE THINGS AND ALSO HERE'S AN
ASSIGNMENT TO REDUCE STRESS IN
YOUR LIFE. IT ACTUALLY ADDS
MORE STRESS. SO, YEAH, I WOULD
SEE, YOU KNOW, THAT THE SIMPLE
QUESTION OF, YOU KNOW, IF YOU
WANT TO SHARE ANY MAJOR STRESSES
YOU'VE HAD MAYBE EVEN THAT YOU
FEEL LIKE MAY HAVE AGGRAVATED
YOUR CONDITION, OR HOW MUCH
STRESS DOES YOUR CONDITION ADD
TO YOUR LIFE? I THINK JUST THAT
QUESTION. AND THEN MAYBE
ALLOWING A CONVERSATION TO
CONTINUE AS TRUST BUILDS OVER
TIME AND THE RELATIONSHIP
EVOLVES. BUT I THINK OTHER
FOLKS MIGHT HAVE GOOD THINGS TO
SHARE TOO.
>> YEAH, I JUST -- I WANTED TO
SHARE AS WELL REALLY QUICK. YOU
KNOW, FOR ME, SOMETIMES WHEN A
DOCTOR TELLS ME, THIS IS WHAT
YOU HAVE TO DO AND I DON'T HAVE
THE RESOURCES TO DO IT. THAT
ADDS STRESS AND SHAME. SO THEN
I COME BACK TO YOU AND I'M LIKE
I DIDN'T DO IT AND YOU'RE
NONCOMPLIANT AT THAT TIME AND
IT'S KIND OF CHARACTERLY WHAT
-- EXACTLY WHAT SONYA IS
SEEING.
YOU HAVE TO TAKE THE STRESS
LEVEL AND THE RESOURCES
AVAILABLE INSTEAD OF THE BLAME
ON WHAT WE CAN DO.
>> I'LL ADD SOMETHING. SO MY
PERSPECTIVE OF MY RELATIONSHIPS
WITH CLINICIANS IS IT'S MY
RELATIONSHIP
RELATIONSHIPS WITH THEM. THEIR
CONVERSATION TO NAVIGATE HOW TO
MAINTAIN A HEALTHY -- AS HEALTHY
AS POSSIBLE RELATIONSHIP WITHIN
THE CONFINES OF THE U.S. EHEALTH
CARE SYSTEM.
NOTHING'S PERFECT EXCUSE ME.
AND SO I LIKE THE APPROACH OF
TREATING IT LIKE A LONG-TERM
RELATIONSHIP WHERE YOU ASK EACH
OTHER IS THIS WORKING? HOW IS
IT WORKING? AND ON THE TOPIC OF
STRESS. AND NOT ADDING STRESS.
BUT TRYING TO BE PROACTIVE.
ASKING A QUESTION LIKE WHAT
SUPPORT SYSTEMS DO YOU HAVE IN
PLACE AND IS THERE SOMETHING
THAT I CAN DO TO INCREASE THOSE
SUPPORT SYSTEMS THAT CAN HELP
REDUCE ANY STRESS THAT CAN BE
REDUCED, LIKE, RATHER THAN
PUTTING THE ONUS ON THE PATIENT
TO DO THEMSELVES BEING AN ACTIVE
CARE PARTNER IN THAT. AND
SAYING HOW CAN I BE A PART OF
REDUCING THE STRESS? BECAUSE
SOMETIMES IT IS RELATED TO THE
CARE BEING RECEIVED. IT'S NOT
JUST THE LIFE OUTSIDE THE EXAM
ROO
ROOM.
>> ALL RIGHT SO I WROTE THIS
DOWN BECAUSE THERE'S A LOT THAT
I WANTED TO SHARE SO FIRST I
WANT TO THANK YOU FOR SHARING
YOUR STORY. FOR BEING
ADVOCATES. I IMAGINE IT'S NOT
EASY LIVING WITH A CAN AND
HAVING TO EDUCATE PEOPLE ON THAT
CONDITION ON TOP OF THAT SO
THANK YOU. APPRECIATE YOUR
PRESENCE HERE TODAY. WE ALL
KNOW THAT PAIN IS A COMPLEX
CONDITION AND THEN WE ADD
MULTIPLE LAYERS OF COMPLEXITY
BASED ON EVERYTHING YOU SHARE
TODAY FROM PATIENT EXPERIENCE
LACK OF DIAGNOSIS. BEING
STIGMATIZED AND THE LIST GOES ON
AND ONTO WHAT I BELIEVE IS A
SYSTEMATIC ISSUE SO TODAY WE
SHARE A VERY SPECIAL MOMENT. WE
HAVE PATIENTS WITH LIVED
EXPERIENCES, CLINICIANS,
RESEARCHERS AND LEADERS OF THE
NIH IN THE SAME PLACE AND I WANT
TO ASK EACH ONE OF YOU, I KNOW
IT'S A COMPLEX PROBLEM. BUT
WHERE DO WE START? IF YOU COULD
NAME ONE THING THAT YOU WANT TO
SHARE WITH ALL OF THESE PEOPLE
TODAY, AND I KNOW ONE THING
WON'T SOLVE ALL OF THE PROBLEMS
BUT WHAT IS A -- THE PRACTICAL
STEP THAT WE COULD TAKE TODAY
THAT WOULD MAKE YOUR LIVED
EXPERIENCE BETTER?
>> I'D HAVE TO STEP IN YOUR
WORLD. WHEN I SEE YOURS, I MEAN
THE PHYSICIANS. I ALWAYS HAVE
TO STEP INTO THEIR WORLD TO GET
THEM TO UNDERSTAND MINE. WHEN I
SEE THAT I MEAN, DEFINITIONS OF
SIMPLE TERMS. YOU KNOW, I AM
SOMEONE WHO JUST LOVES TO
RESEARCH ON MY OWN AND FIND OUT
THE DEFINITIONS BUT I SHOULDN'T
HAVE HAD TO DONE THAT. SO IF
YOU CAN JUST BREAK THINGS DOWN
EASIER FOR ME TO UNDERSTAND OR
US TO UNDERSTAND. AND JUST
REALIZE WE DON'T HAVE THE
MEDICAL DEGREE BUT THAT DIDN'T
NECESSARILY MEAN WE WON'T
UNDERSTAND SO I WOULD JUST SEE
COMING INTO OUR WORLD AND NOT
HAVING THIS SENSE OF, I'M JUST
GOING TO RUN OFF ALL THESE
DIAGNOSIS AND BLOOD LAB RESULTS
AND OF COURSE THEY UNDERSTAND.
THEY'VE BEEN PATIENTS FOR YEARS,
OBVIOUSLY THEY'LL UNDERSTAND.
STEP INTO OUR WORLD AND THAT WE
HAVE TO SEE YOUR BRAIN AND WHAT
YOU SEE.
>> I GUESS IF I HAD TO SHARE ONE
THING IT'S TO STAY HUMBLE. WE
KNOW YOU'RE EDUCATED. YOU'RE
HIGHLY EDUCATED INDIVIDUALS AND
BECAUSE WE ASK QUESTIONS AS
PATIENTS OR DON'T FEEL IT'S
QUITE RIGHT SOMETIMES WE'RE FOOT
REALLY VALIDATED BECAUSE OUR
EDUCATION ISN'T AS HIGH AS
YOURS.
SO STAY SUMMABLE BECAUSE THE
SMARTEST MAN IN THE WORLD
DOESN'T KNOW EVERYTHING AND HE
KNOWS. SOMETIMES WE KNOW OUR
BODIES, SOMETIMES YOU'LL WE KNOW
YOU'LL GET BLOOD FROM AND
SOMETIMES YOU DON'T LISTEN.
STAY HUMBLE IS WHAT I WOULD SEE.
>> I'LL GO. THIS IS CHARIS. SO
I -- THAT IS SUCH A GREAT
QUESTION. AND PUTTING THIS ALL
INTO CONTEXT OF THE ENVIRONMENT
WE'RE IN TODAY. SO THANK YOU.
I THINK IT'S REALLY IMPORTANT
FOR ME TO SHARE THAT I OPERATE
REALLY STRONGLY UNDER THE TEN
PRINCIPLES OF DISABILITY JUSTICE
AND YOU CAN FIND THOSE ON SINS
INVALID. THAT'S A NONPROFIT IN
THE BAY AREA. AND ONE OF THOSE
LEADING PRINCIPLES IS THAT THOSE
WHO ARE MOST IMPACTED LEAD THE
CHARGE. SO IF YOU ARE -- IF YOU
HAVE A PERSONAL STAKE IN THE
OUTCOME, IN TERMS OF WHERE WE
ARE TODAY, THAT MEANS PEOPLE
LIVING IN PAIN. THEN YOU ARE
LEADING THE CHARGE, YOU ARE THE
HEAD OF THE TABLE AND THAT
DOESN'T MEAN WE'RE TAKING OVER.
I MEAN, I WOULD BE OKAY IF PAIN
PATIENTS TOOK OVER THE WORLD BUT
BEING LIKE FULLY EQUAL THAT
MEANS FROM VERY START OF CONCEPT
OF THE RESEARCH TO CREATING THE
OBJECTIVE TS TO RECRUITING THE
PARTICIPANTS OF THE STUDY.
AND TO DISSEMINATION. O ALL OF
THAT WE NEED TO BE EQUAL
PARTNERS OF THE TABLE.
NOT AS PEOPLE YOU BRING IN AS
CONTRACTORS OR LIKE -- ONE
PERSON FOR THIS, YOU KNOW, ONE
SURVEY. WE NEED TO BE PART OF
THE TEAM AS EQUALS. CREATING,
DEVELOPING, DISSEMINATING AND
THAT'S REALLY THE ONLY WAY THAT
THOSE WHO ARE MOST IMPACTED WILL
BENEFIT THAT THE PRIMARY TAKE
HOLDERS WHO ARE PAIN PATIENTS
WHO WILL GET PAIN CARE THAT IS
EQUITABLE, THAT IS MEANT FOR US.
>> YEAH. I DEFINITELY, YOU
KNOW, ECHO WHAT EVERYONE HAS
SAID. ALREADY. I THINK THE ONE
THING THAT I THINK COULD MAKE A
DIFFERENCE IS I'M SORT OF
DESPERATE TO REDUCE THE PAIN IN
MY LIFE AND SO I'M ALWAYS
READING AND TRYING EVERYTHING.
THERE ARE A NUMBER OF TREATMENTS
THAT I BROUGHT TO MY
RHEUMATOLOGISTS OR BROUGHT TO
OTHER DOCTORS TO SEE IF WE COULD
TRY. SO I THINK, YOU KNOW, KIND
OF GOING OFF OF WHAT CHARIS HAD
SAID, LIKE THAT WE HAVE GOOD
IDEAS FOR WHAT TO LOOK INTO
NEXT. AND THEN I THINK AS FAR
AS CLINICIANS, SOMEONE TO JUST
LOOK AT US AND FIRST ASK HOW WE
ARE. YOU KNOW, WITH EYE
CONTACT, BEFORE STARTING TO TYPE
BY, BUT YEAH I'M EXCITED ABOUT
A FEW THINGS THAT ARE WORKING
FOR ME.
THAT, YOU KNOW, MIGHT BE A
MEDICAL STUDIES AND I DON'T
KNOW, FIVE TEN YEARS. AND SO I
WOULD LIKE SOME SORT OF
OPPORTUNITY TO SHARE THOSE IDEAS
AS SITES FOR FUTURE RESEARCH.
YEAH.
>> I JUST WANTED TO ADD
SOMETHING TO CHARIS' POINT AS
FAR AS INDIVIDUALS WHO IN THE
ENTIRE PROCESS HAVE A LIVED
EXPERIENCE. MEMBER CHECKING IS
SO CRITICAL. MAKE SURE YOU HAVE
IT RIGHT. AS A MENTEE OR -- I
WOULD NEVER JUST PUT SOMETHING
OUT THERE WITHOUT CHECKING WITH
MY MENTOR, MAKING SURE THAT WE
DID IT RIGHT. WE EDIT THINGS
OVER AND OVER AGAIN. SO MEMBER
CHECKING IS REALLY CRITICAL AND
ALSO JUST MAKING SURE THAT
YOU'RE COMING BACK AND YOU'RE
SHOEING THEM WHAT YOU DID.
LIKE, WHAT ALL THE WORK THAT YOU
DID. IT'S -- HOW MANY TIMES
HAVE WE HEARD YOU JUST WALK
AWAY, THAT'S IT, RESEARCH IS
DONE, YOU'RE GONE. YOU HAVE TO
COME BACK BECAUSE THESE PEOPLE
INVEST THEIR LIVES, THEIR TIME,
THEIR ENERGY, AND INTO DOING
THIS AND THEN YOU WALK AWAY AND
YOU DON'T EVEN KNOW WHAT
HAPPENED TO IT. SO, YEAH.
>> I HAVE AN E- - -Q. -- QUEST
I WONDER IF YOU CAN SHARE YOU
WERE EXPERIENCE OF BEING BOTH
WITH YOUR PAIN, BEING BOTH A
CHILD AND HAVING A DISORDER THA
I WONDER IF YOU CAN SHARE YOU
WERE EXPERIENCE OF BEING BOTH
WITH YOUR PAIN, BEING BOTH A
CHILD AND HAVING A DISORDER THAT
IS DEFINED BY HAVING A UTERUS OR
YOUR ANCESTRY AND HOW YOU FELT
THAT COMPROMISED ANY PART OF THE
EXPERIEN
EXPERIENCE?
>> I HAD A WALL IN MY UTERUS.
AND FOR MONTHS AND MONTHS AND
MONTHS I KEPT TELLING PEOPLE I
WAS IN PAIN. AND NOBODY
COULD -- NOBODY KNEW WHY. I WAS
KIND OF IGNORED FOR AWHILE AND
WAS CALLED PAIN SEEKING AT 11.
MEDICATION SEEKING AT 11. AND
IT WASN'T UNTIL A DOCTOR SAID,
OH, LET'S DO A SONOGRAM THAT
THEY FOUND I HAD A MASS INSIDE
MY UTERUS. I WAS MISSING A
KIDNEY AND I HAD A FALLOPIAN
TUBE WRAPPED AROUND THE OTHER
ONE AND FOR ME AS A CHILD IT
IMMEDIATELY KIND OF DREW THIS
LINE OF TRUST. RIGHT? I NEEDED
HELP. I COULDN'T WALK. BECAUSE
THIS MASS WAS PUSHING ON MY
BLADDER, ON MY INTESTINES, I
COULDN'T PEE OR POOP. I WAS
HUNCHED OVER. AND CALLED PAIN
SEEKING. OR MEDICATION SEEKING.
AT 11. SO I THINK AS AN ADULT,
I ADVOCATE STRONGLY, INDUSTRIAL,
MY MOM IS PASSED AND I STILL
ADVOCATE FOR HER, BUT WHEN IT
COMES TO ADVOCATING FOR MYSELF
AND HOW LITTLE I FELT THAT HAS
TRANSCENDED TO ME AS AN ADULT SO
SOMETIMES WHEN I HAVE A FLARE
AND I CAN'T WALK I DON'T ASK FOR
HELP, I DON'T NEED THE JUDGMENT.
I THINK THAT EXPERIENCE AS A
CHILD REALLY IMPACTED ME AND
ALSO BEING -- HAVING SUCH A
GENDER SPECIFIC ILLNESS WHERE
IT'S LIKE, OH, YOU GET A PERIOD
EVERY MONTH, YOU'RE SUPPOSED TO
BE IN PAIN. YOU KNOW, I DON'T
ASK FOR HELP. I BEACH MYSELF ON
A COUCH AND I TELL EVERYBODY YOU
KNOW WHAT TIME IT IS JUST LEAVE
ME ALONE FOR THREE DAYS, I'M
JUST GOING TO STAY THERE AND I
JUST THINK WE'RE GETTING MORE
EXPOSURE TO ENDOMETRIOSIS AND
WHAT WOMEN GO THROUGH MONTHLY.
ONE IN TEN WOMEN WILL HAVE
ENDOMETRIOSIS AND IT IS A VERY
PAINFUL THING THAT STARTS AT A
VERY YOUNG AGE.
>> FOR ME THERE'S SO MUCH I
DIDN'T KNOW ABOUT MY ILLNESS
UNTIL I WAS AN ADULT. THINKING
THAT THIS DISEASE ONLY AFFECTED
BLACK PEOPLE OR AFRICAN
AMERICANS. SO NOT KNOW THAT ALL
RACES CAN EXPERIENCE OR LIKE
HAVE SICKLE CELL. I SHOULD HAVE
KNOWN THAT EARLIER. I FELT
ALONE. IN MY OWN COMMUNITY I
WAS ONE OF NONE. LIKE I JUST
WAS SO OSTRACIZED NOT KNOWING
MUCH ABOUT MY ILLNESS AT A
YOUNGER AGE WHEN THEN I WOULD
ALSO SEE DIFFERENT TREATMENT OF
HOW MY DIAGNOSIS WAS HANDLED
DIFFERENTLY IN THE HOSPITAL THAN
OTHER DIAGNOSIS. THEY KNEW SO
MUCH MORE ABOUT. BUT STILL I
FELT THEY STILL DIDN'T KNOW MUCH
ABOUT MINE. EVEN AS A CHILD I
WITNESSED, YOU KNOW, NO ONE
REALLY CARES ABOUT YOUR ILLNESS.
THEY DON'T KNOW ABOUT IT.
SO....
>> THANK YOU SO MUCH. I HAVE 20
MORE QUESTIONS AT LEAST AND
LUCKILY I HAVE YOUR E-MAILS SO I
CAN FOLLOW UP. BUT IF ANYBODY
ELSE WANTS TO FOLLOW UP AND HAS
QUESTIONS. MY ENA-ME-MAIL. PL
FEEL FREE TO REACH OUT TO ME AND
I CAN FIND OUT HOW TO CONNECT
WITH THESE PEOPLE IN A NON
EXHAUSTING WAY.
THANK YOU SO MUCH, THIS HAS BEEN
AMAZING.
>> THANK YOU.
>> ALL RIGHT. GOOD MORNING.
I'M ANDREW MANNES, I'M CHIEF OF
THE DEPARTMENT HERE AT THE
NATIONAL INSTITUTES OF HEALTH
WE'RE NOW AT THE HOMESTRETCH
THIS IS THE LAST PANEL OF THE
DAY. THE CONFERENCE. AND I'LL
JUMP RIGHT INTO THE -- WITH --
INTO THE INTRODUCTION FOR OUR
FIRST PANELIST. I THINK WE'RE
GOING HAVE THE QUESTION AND
ANSWER AT THE END. I HAVE THE
PLEASURE OF INTRODUCING OUR
FIRST PANELIST TODAY, DIANE
HOFFMAN. WHO IS THE JACOB A.
FRANCE PROFESSOR AT HEALTH LAW
AT THE UNIVERSITY OF MARYLAND,
CARRIE SCHOOL OF LAW,
DISTINGUISHED UNIVERSITY
PROFESSOR AND DIRECTOR OF THE
SCHOOL'S LAW AND HEALTH CARE
PROGRAM. SHE RECEIVED HER LAW
DEGREE FROM HARVARD AND RECEIVED
HER MASTER'S FROM THE SAME
INSTITUTION. AND ONE OF THE
PRIMARY AUTHORS OF THE HEALTH
CARE ACT WHICH ESTABLISHES
PROCEDURES AT THE END OF LIFE
WHO LACK DECISION-MAKING
CAPACITY. SHE SERVED AS THE
MEMBER OF A NUMBER OF ETHICS
COMMITTEES INCLUDING THOSE AT
THE UNIVERSITY OF MARYLAND
MEDICAL SYSTEM. AND ALSO HERE
AT THE CLINICAL CENTER AT THE
NATIONAL INSTITUTES OF HEALTH.
DR. HOFFMAN WAS THE ACTING STAFF
DIRECTOR AT THE SENATE SUB
COMMITTEE ON AGING, SERVED AS A
MEMBER OF THE BOARD OF DIRECTORS
AT THE AMERICAN SOCIETY OF LAW,
MEDICINE AND ETHICS. SHE
CURRENTLY CHAIRS THE MARYLAND
STEM CELL MISSION AND IS
CO-CHAIR OF THE U.S. ASSOCIATION
OF THE STUDY OF PAIN ADVOCACY
COMMITTEE. HAS PUBLISHED
NUMEROUS ARTICLES ON PAIN ISSUES
IN LEADING SCIENTIFIC JOURNALS A
SIGNIFICANT AMOUNT OF HER
SCHOLARSHIP FOCUSED ON LEGAL
OBSTACLES FOR THE TREATMENT OF
PAIN AND INCLUDES PAIN
MANAGEMENT IN TER RAH OF MANAGED
CARE. THE ROLE OF THE MEDICAL
BOARDS. REGULATION OF MEDICAL
MARIJUANA. CRIMINAL PROSECUTION
OF PHYSICIANS FOR
OVERPRESCRIBING OF OPIATES AND
MOST IMPORTANTLY FOR TODAY, IS A
BIAS AGAINST WOMEN IN THE
TREATMENT OF PAIN. TODAY'S TALK
IS THE DISPARITY AND PAIN
TREATMENT BASED ON SEX.
DR. HOFFMAN.
>> GOOD MORNING, EVERYONE, IT'S
A PLEASURE TO BE HERE AND TO
HAVE THE OPPORTUNITY TO SPEAK
WITH YOU TODAY. SO YOU HEARD
I'M NOT A SCIENTIST, I'M A LAW
PROFESSOR, BY I HAVE DONE A
SIGNIFICANT AMOUNT OF RESEARCH
ON THE TOPICS OF DISPARITIES IN
THE TREATMENT OF PAIN BASED ON
SEX AND IN MY SHORT TIME THIS
MORNING I WOULD LIKE TO SHARE
WITH YOU THE STORY OF THE
EVOLUTION OF MY WORK IN THIS
AREA. SO IN 2001 I PUBLISHED AN
ARTICLE CALLED THE GIRL WHO
CRIED PAIN A BIAS AGAINST WOMEN
IN THE TREATMENT OF PAIN AND
MOST OF MY WRITING BEFORE THAT
WAS ON FINANCIALING INGOBSTACLE
WHILE I WAS DOING THE RESEARCH I
CAME ACROSS AN ARTICLE ABOUT
LOOKING AT HOW MEN AND WOMEN
WERE TREATED FOR THEIR PAIN
AFTER CORONARY ARTERY BYPASS
GRAFT SURGERY AND MEN WERE MORE
LIKELY TO BE GIVEN ANALGESIA AND
WOMEN FOR LIKELY TO BE GIVEN
SEDATIVES AND I WAS TROUBLED BY
THAT RESULT BUT I WANTED TO SEE
HOW WIDESPREAD THE TREATMENT WAS
BUT BEFORE THEY NEEDED TO LEARN
MORE ABOUT WHAT WAS AT THE TIME
ABOUT HOW MEN AND WOMEN
EXPERIENCE AND REPORT PAIN AND
WHETHER THERE WERE DIFFERENCES
IN THE BIOLOGICAL AND
PSYCHOSOCIAL BASES OF PAIN
BETWEEN MEN AND WOMEN. BASED ON
A LITERATURE REVIEW MY COAUTHOR
AND I FOUND THAT WOMEN WERE MORE
LIKELY THAN MEN TO EXPERIENCE AT
LEAST, OR AT LEAST REPORT A
NUMBER OF CHRONIC PAIN
CONDITIONS AND IN ADDITION, IN
EXPERIMENTAL SETTINGS, WOMEN HAD
LOWER THRESHOLDS, LOWER PAIN
TOLERANCE THAN MEN. THESE ARE
THINGS THAT WE ALL KNOW NOW.
BUT DESPITE THE DIFFERENCES IN
PAIN EXPERIENCE, SEVERAL STUDIES
AT THE TIME ALSO INDICATED THAT
WOMEN WERE MORE LIKELY TO BE
INADEQUATELY TREATED FOR THEIR
PAIN AND SO WE ATTRIBUTED THAT
FINDING TO HEALTH CARE PROVIDERS
WHO WERE MORE LIKELY TO DISCOUNT
WOMEN'S VERBAL REPORTS AND GAVE
MORE IMPORTANCE TO BIOLOGICAL
PAIN CONTRIBUTORS THAN EMOTIONAL
OR PSYCHOLOGICAL CONTRIBUTORS.
THE ARTICLE TO MY SURPRISE
THOUGH STRUCK A CHORD WITH H
HIM -- WOMEN AND JOURNALISTS.
THE NEW YORK TIMES POSTED A
THREE PAGE ARTICLE BASED LARGELY
ON OUR ARTICLE AND POSSIBLY AS A
RESULT, THE ARTICLE HAS BEEN
CITED MANY, MANY TIMES.
AND OVER THE SUBSEQUENT 20 YEARS
I RECEIVED MANY CALLS FROM
JOURNALISTS AND REPORTERS WHO
WANTED TO TALK TO ME ABOUT MY
FINDINGS AND WANTED TO KNOW
WHETHER IT WAS STILL THE CASE
THAT THERE WERE THESE TREATMENT
DISPARITIES AND AFTER AWHILE I
WOULD SEE TO THEM I REALLY DON'T
KNOW THE ARTICLE WAS PUBLISHED
MANY YEARS AGO AND I DON'T KNOW
IF THINGS WERE THE SAME SO I
DECIDED TO WRITE A FOLLOW UP
ARTICLE DESCRIBING BOTH WHAT
RESEARCHERS HAD LEARNED OVER THE
LAST 20 YEARS ABOUT THE CAUSES
AND EXPERIENCE OF CHRONIC PAIN
FOR MEN AND WOMEN. ALONG WITH
WHETHER DISPARITIES IN TREATMENT
STILL EXISTED SO THE SECOND
ARTICLE WAS CALLED THE WOMAN WHO
CRIED PAIN AND THAT WAS
PUBLISHED IN 2022. THIS WAS
COAUTHORED WITH ROGER WHO WE
HEARD FROM YESTERDAY. AND
KRISTIN VEEZLY THE DIRECTOR OF
THE CHRONIC PAIN RESEARCH
ALLIANCE. THIS ARTICLE LIKE THE
ORIGINAL FIRST DESCRIBED WHAT WE
KNOW ABOUT DIFFERENCES IN
BIOLOGY.
AND PSYCHOSOCIAL FACTORS BETWEEN
MEN AND WOMEN THAT LEAD TO
DIFFERENCES IN THEIR PAIN AND
THEN REPORTED ON THE STUDIES
THAT LOOKED AT WHETHER MEN AND
WOMEN ARE TREATED DIFFERENTLY.
FOR THEIR PAIN. AND WHETHER
THAT INFLUENCE MIGHT BE DUE TO
IMPLICIT BIAS OR OTHER REASONS.
OUR ARTICLE FOCUSED ON SEX
THOUGH AS A BINARY
CHARACTERISTICS BASED ON
REPRODUCTIVE ORGANS AND
FUNCTIONS ASSIGNED BY CHROMOSOME
COMPLEMENT. ALTHOUGH WE
RECOGNIZE THAT THAT CONCEPTS
WERE OUTMODED THE CONCEPTS WSH
NOT CATEGORIZING INTO OTHER
GENDER-BASED CATEGORIES.
AND I'M SO EXCITE THAT HAD THIS
CONFERENCE THAT PEOPLE THAT
PEOPLE ARE LOOKING AT THAT AS
RESEARCHERS.
BUT MY FOCUS WAS LOOKING AT THE
LITERATURE ON DIFFERENCES IN
PAIN TREATMENT. OVER THE LAST
TWO DECADES. SO ALTHOUGH
ANECDOTAL REPORTS HAD FUELLED
ASSERTIONS OF DISPARITIES AND
PAIN TREATMENT BASED ON SEX A
REVIEW OF THE LITERATURE
REVEALED THERE WERE REALLY NOT
THAT MANY WELL DESIGNED AND
SUFFICIENTLY POWERED STUDIES
THAT LOOKED AT WHETHER WOMEN AND
MEN WERE TREATED OR DIAGNOSED
DIFFERENTLY FOR THEIR PAIN THOSE
THAT HAD BEEN CONTRADICTED CAN
BE CATEGORIZED INTO THREE
GROUPS.
THOSE THAT FOCUSED ON
DIFFERENCES IN TREATMENT OR
DIAGNOSIS BETWEEN MEN AND WOMEN
FOR SPECIFIC MEDICAL CONDITIONS
THAT WERE NOT JUST PAIN.
THINGS LIKE CORONARY DISEASES OR
CONDITIONS OR STROKE. SECOND
WERE STUDIES IN PAIN IN THE
EMERGENCY SETTINGS AND THIRD WAS
UNIQUE TO WOMEN. SO AN EXAMPLE
OF THE LATTER, IS A STUDY
CONDUCTED BY HARLOW AND STEWART
OF WOMEN WITH CHRONIC AS A RULE
VAR PAIN. SIMILARLY ARTICLES
FOUND THAT 50% OF WOMEN WITH
ENDOMETRIOSIS SAW AT LEAST FIVE
HEALTH CARE PROVIDERS BEFORE
RECEIVING A DIAGNOSIS AND A
REFERRAL.
AND A FEW STUDIES HAD LOOKED AT
SEX BASED TREATMENT OR
DIAGNOSTIC DISPARITIES FOR
STROKE AND CARDIAC CASES WHERE
PATIENTS MAY PRESENT WITH PAIN
IN A STUDY TO ASSESS MISSED
STROKES IN THE EMERGENCY
DEPARTMENT, NEWMAN SAW 187,000
RECORDS OF STROKE ADMISSIONS
WITH DISCHARGE FROM OVER ONE
THOUSAND HOSPITALS IN NINE
STATES. THEY FOUND THE TWO MOST
COMMON PRESENTING SYMPTOMS FOR
STROKE MISDIAGNOSIS IN THE
EMERGENCY DEPARTMENT WERE
DIZZINESS AND HEADACHE. AND
THAT WOMEN WERE MUCH MORE LIKELY
TO BE MISDIAGNOSED THAN MEN.
WHEN ASSESSING PATIENTS FOR
STROKE THEY SHOULD BE MORE
ATTENTIVE TO THE SYMPTOMS OF
WOMEN AS WELL AS YOUNGER AND
NONWHITE PATIENTS AND THAT
FUNDING AGENCIES SHOULD SUPPORT
STUDY TO EXAMINE DISPARITIES IN
MISDIAGNOSIS BASED ON SEX, AGE,
RACE OR ETHNICITY BUT MOST OF
THE STUDIES THAT I FOUND WERE IN
THE PRE -- WE ACTUALLY IN THE
PREEMERGENCY DEPARTMENT AND
EMERGENCY DEPARTMENT SETTING.
WHERE PATIENTS OFTEN PRESENT
WITH PAIN AND INTERESTINGLY THE
RESULTS FOR MIXED. SO ONE STUDY
BY MICHAEL LOOKED AT HOW HIGH
EMERGENCY MEDICINE PERSONNEL
RESPOND TO PATIENT COMPLAINTS OF
PAIN BY PATIENT SIX. THIS WAS A
RETROSPECTIVE STUDY OF
ELECTRONIC MEDICAL RECORDS,
APPROXIMATELY ONE THOUSAND CASES
WERE INCLUDED IN THE STUDY. THE
AUTHORS FOUND THAT WOMEN WERE
SIGNIFICANTLY MORE LIKELY TO
RECEIVE LESS ANALGESIA IN
ISOLATED EXTREMITY INJURIES IN
THE PREHOSPITAL SETTING EVEN
WHEN CONTROLLING FOR PAIN
INTENSITY AND CONCLUDED THAT
FURTHER INQUIRIES NEEDED TO
DETERMINE WHILE CERTAIN
POPULATIONS SUCH AS WOMEN
RECEIVED DISPROPORTIONATELY LESS
ANALGESIA AND IN A PROSPECTIVE
STUDY OF 981 ADULTS THAT
PRESENTED WITH ABDOMINAL PAIN
FOUND THAT DESPITE SIMILAR PAIN
SCORES WOMEN WERE LIKELY TO
RECEIVE NO ANALGESIA AND LESS
LIKELY TO RECEIVE OPIATES AND
THIS WAS WHEN GENDER SPECIFIC
DIAGNOSIS WAS EXCLUDE AND AFTER
INCLUDING RACE, WOMEN WERE STILL
LESS LIKELY THAN MEN TO RECEIVE
OIP OIP YOIT ANALGESIA.
BUT IN ADDITION, WOMEN ALSO
WAITED LONGER TO RECEIVE THEIR
ANALGESIA. THE MEDIAN TIME WAS
65 MINUTES FOR WOMEN VERSUS 49
MINUTES FOR MEN. THE RESULTS
MAY BE DUE TO GENDER BIAS.
HOWEVER OTHER STUDIES IN THE
EMERGENCY DEPARTMENT HAVE HAD
DIFFERENT RESULTS IN A
RETROSPECTIVE STUDY IN THE
RECORDS OF 868 PATIENTS PROT
PRESENTING WITH MUS CUE KOE --
MUS CUE KOE SKELETAL PAIN IT WAS
UNDER GENDER.
IN A MULTICENTER STUDY OF 16
EMERGENCY DEPARTMENTS, THE
INFLUENCE OF BOTH PROVIDER AND
PATIENT R PATIENT GENDER OR SEX
OF AN ANALGESIC ADMINISTRATION
WITH PATIENTS FROM MODERATE TO
SEVERE PAIN TREATED WITH OVER
120 PERIOD. 842 PATIENTS
PARTICIPATED IN THIS STUDY. THE
BASELINE PAIN SCORES WERE
SIMILAR FOR BOTH SEXES. RATES
FOR NOT SIGNIFICANTLY DIFFERENT
FROM FEMALE AND MALE PATIENTS.
BUT FEMALE PATIENTS WERE
SLIGHTLY MORE LIKELY TO RECEIVE
OPIOIDS THAN MALE PATIENTS.
THERE HAVE BEEN ALSO BEEN SOME
STUDIES IN THE LAST DECADE THAT
INDICATE THAT HEALTH CARE
PROVIDERS ARE MORE LIKELY TO
PRESCRIBE PSYCHE TROPHIC
MEDICATIONS THAN MEN WHEN BOTH
PRESENT WITH THE SAME SYMPTOMS.
IN TWO RELATED STUDIES PUBLISHED
IN 2013-14 THE AUTHOR USED
CLINICAL PAIN VIGNETTE TO ASSESS
PROVIDER TREATMENT PREFERENCES.
FEMALE WERE SIGNIFICANTLY MORE
LIKELY TO RECEIVE
RECOMMENDATIONS FOR
ANTIDEPRESSANTS AND
PSYCHOLOGICAL TREATMENT THAN
MALES IN BOTH CASES, MALE AND
FEMALE PATIENTS HAD SIMILAR
SYMPTOMS. AND FACIAL
EXPRESSIONS. AND THOSE SAME
STUDIES MEN WERE MORE LIKELY TO
BE PRESCRIBED ANALGESICS THAN
WOMEN. THEN WE ALSO REVIEWED
THE LIT CHERATURE WHAT MIGHT
ACCOUNT FOR DIFFERENCES IN
TREATMENT. AND ONE SIGNIFICANT
SUGGESTION THAT CAME UP SEVERAL
TIMES HAS BEEN IMPLICIT BIAS OR
UNCONSCIOUS BIAS THAT OPERATES
OUTSIDE OF THE PERSON'S
AWARENESS AND CAN BE A DIRECT
CONTRADICTION TO THEIR ESPOUSED
BELIEFS. ALTHOUGH THERE MAY NOT
HAVE BEEN MANY STUDIES IN
DIFFERENCES IN ACTUAL TREATMENT
OF PAIN MEDICATION BASED ON SEX
THERE HAVE BEEN STUDIES LOOKING
AT HEALTH CARE PROVIDER IMPLICIT
BIAS. WHEN TREATING PATIENTS
PRESENTING WITH PAIN. A NUMBER
OF THESE STUDIES USED AVATARS TO
ASSESS THE PROVIDER
DECISION-MAKING. OTHERS USED A
QUESTIONNAIRES. FOR EXAMPLE,
HIRSCH EXPOSED 54 NURSES TO
VIGNETTES OF VIRTUAL PATIENTS
AFTER SURGERY AND THE VIRTUAL
PATIENTS DIFFERED BY SEX, AGE,
RACE AND FACIAL EXPRESSION. THE
NURSES MADE ASSESSMENTS OF
PATIENT PAIN AND RENDERED
TREATMENT DECISIONS AND WERE
THEN ASKED TO INDICATE WHAT
INFORMATION THEY RELIED ONTO
MAKE THEIR DECISIONS. AND NONE
INDICATED THAT THE PATIENT'S
DEMOGRAPHIC INFORMATION
INFLUENCED THEIR DECISIONS WHEN,
IN FACT, STATISTICAL MODELING
INDICATED THAT 28-54% USED
PATIENT DEMOGRAPHIC CUES
INCLUDING SEX TO MAKE THEIR
DECISIONS. BIAS MAY BE COMMON
IN PRACTITIONER DECISION-MAKING
ABOUT PAIN BUT THE PROVIDERS
HAVE MINIMAL AWARENESS AND/OR A
LACK OF WILLINGNESS TO
ACKNOWLEDGE THAT BIAS. IN A
SUBSEQUENT STUDY, USING SIMILAR
METHODS MEDICAL TRAINEES WERE
ASKED TO REVIEW VIGNETTES OF 16
VIRTUAL PATIENTS WITH CHRONIC
LOW BACK PAIN. WHO DIFFERED BY
RACE AND SEX AND MADE TREATMENT
DECISIONS INCLUDING WHETHER THEY
WOULD PROVIDE OPIOIDS,
ANTIDEPRESSANTS OR PHYSICAL
THERAPY. THE TRAINEES WERE
ASKED TO INDICATE THE FACTORS
THAT INFLUENCED THEIR
DECISION-MAKING. THE RESEARCH
FOUND THAT 30% OF PARTICIPANTS
WERE RELIABLY INFLUENCED BY THE
PATIENT'S SEX AND 15% BY THE
PATIENT'S RACE. HOWEVER, WELL
DURING FOLLOW UP INTERVIEWS THE
STUDY AUTHORS NOTED, SOME
PARTICIPANTS ENDORSED
STEREOTYPICAL BELIEVERS ABOUT
FEMALE PATIENTS SUCH AS WOMEN
WOULD HAVE LESS OCCUPATIONAL
IMPAIRMENT DIE TO PAIN AND THERE
WOULD BE LESS IN MEN. THESE
VIEWS THE AUTHORS SAID FIT WITH
EVIDENCE THAT PROVIDERS OFTEN
ATTRIBUTE FEMALE PATIENTS' PAIN
TO PSYCHOLOGICAL FACTORS
PARTICULARLY WHEN THERE'S NO
OBSERVABLE PAIN PATHOLOGY. AND
BELIEVE THAT WOMEN HAVE HIGHER
PAIN TOLERANCES THAN MEN. SOME
OF THESE ATTITUDES MAY BE
LEARNED BY MEDICAL STUDENTS
DURING THEIR MEDICAL EDUCATION.
ACCORDING TO RICE THERE IS
EVIDENCE THAT MEDICAL STUDENTS'
ATTITUDES GET PROGRESSIVELY
WORSE AS THEY GO THROUGH MEDICAL
SCHOOL IN A STUDY OF MEDICAL
STUDENTS AND RESIDENTS THE
AUTHORS FOUND TRAINEES VIEWED
CHRONIC PAIN MANAGEMENT ON BE TS
LEFT THEM CONFUSED AND HOW TO
PROVIDE CARE AND THEIR
PRECEPTORS HAVE INDICATED THESE
PATIENTS HAD LITTLE EDUCATIONAL
VALUE. HEALTH CARE PROVIDERS,
EVEN EARLY STAGE PRACTITIONERS
MAY HAVE IMPLICIT BIAS WHEN IT
COMES TO THEIR ATTITUDES AS
TREATING PATIENTS AS WELL AS
WOMEN AND THEIR PAIN ANOTHER
REASON I WANTED TO MENTION THAT
HAS COME UP THAT MAY ATTRIBUTE
IT TO DIFFERENCES IN PAIN
TREATMENT BY SEX IS DIFFICULTY
OF DIAGNOSIS. MANY OF THE PAIN
RELATED CONDITIONS, CHRONIC
FATIGUE SYNDROME MUST BE
DIAGNOSED BY EXCLUSION. THERE'S
NO DIAGNOSTIC TEST FOR THEM.
FOR EXAMPLE, IN AN ARTICLE
ABOUT FIBROMYALGIA STATED THE
DIAGNOSIS MANAGEMENT AND
STREEMENT TREATMENT IS A
CHALLENGE FOR HEALTH CARE
PROFESSIONALS AND PATIENTS.
MAINLY DUE TO UNKNOWN SYMPTOM
OVERLAP AND A LACK OF OBJECTIVE
DIAGNOSTIC TECHNIQUES. VERY
OFTEN THERE'S NONUNIFORMITY IN
SYMPTOM EXPERIENCE AMONG
PATIENTS. MANY OF THE PAINFUL
CONDITIONS THAT PLAGUE WOMEN ARE
ALSO POORLY UNDERSTOOD. PERHAPS
IN PART BECAUSE THE FEDERAL AND
PRIVATE INSTITUTIONS THAT FUND
RESEARCH INTO CHRONIC PAIN
DISORDERS REMAINS INCOMMISERATE
IN THEIR SOCIETAL BURDEN. WE
KNOW LITTLE ABOUT THE CAUSES AND
EFFECTIVE TREATMENTS FOR THESE
CONDITIONS.
SO IF YOU CAN GO BACK TO THE
LAST SLIDE, SO WHAT CAN WE DO
ABOUT THESE CHALLENGES AND
RESULTING DISPARITIES? WHAT
WE -- AND MY COAUTHORS
RECOMMENDED IS FIRST, THERE
NEEDS TO BE MORE IMPLEMENTATION
RESEARCH, FUNDING, THE CHRONIC
PAIN CONDITIONS THAT ARE MORE
COMMON TO WOMEN PARTICULARLY
THOSE THAT ARE MORE DIFFICULT TO
DIAGNOSE AND TREAT. SECOND, WE
NEED ADDITIONAL LARGE
WELL-DESIGNED STUDIES
INVESTIGATING WHETHER THERE ARE
DISPARITIES IN THE TREATMENT OF
MEN AND WOMEN FOR PAIN. THIRD
MORE RESEARCH NEEDS TO BE DONE
ON HOW BIOLOGICAL CULL CHAURL --
CULTURAL FACTORS COMBINE FOR MEN
AND WOMEN. FOURTH WE SAID THERE
NEEDS TO BE BETTER EDUCATION OF
MEDICAL STUDENTS AND PHYSICIANS
ABOUT HOW TO DIAGNOSE AND TREAT
ACUTE AND CHRONIC PAIN
CONDITIONS, ABOUT STEREOTYPES,
ABOUT SEX BASED PAIN, AND THE
NEED TO TREAT THESE PATIENTS AND
MORE TRAINING FOR STUDENTS TO
IDENTIFY AND REDUCE IMPLICIT
BIAS RELATED TO THE TREATMENT OF
WOMEN FOR CHRONIC PAIN AND WITH
THAT, I'LL END AND THANK YOU SO
MUCH FOR YOUR TIME AND
ATTENTION. AND TAKE QUESTIONS
IN THE Q&A. THANK YOU.
>> OUR SECOND SPEAKER. DR. SARA
JANE WARD IS THE TENURED
ASSOCIATE PROFESSOR IN THE
DEPARTMENT OF NEURAL SCIENCES IN
THE CENTER FOR SUBSTANCE ABUSE
RESEARCH AT TEMPLE UNIVERSITY
SCHOOL OF MEDICINE. SHE EARNED
HER PH.D. IN NEUROSCIENCE AND
HER POST-DOCTORAL RESEARCH WAS
WITH ELLEN WALKER AND FOCUSED ON
THE CANNABINOID SYSTEMS AND
COCAINE REINFORCEMENT AND WORKS
WITH THE THERAPEUTIC POTENTIAL
OF THESE USEN ANIMAL MODELS OF
PAIN INFLAMMATION AND SUBSTANCE
USE DISORDER.
AND THIS COMBINES THE EFFECTS OF
CANNABINOIDS AND THIS WORKS WITH
THE CBD IN RODENT MODEL OF
CHEMOTHERAPY AND PAIN. AND HAS
INSPIRED THE IMPLEMENTATION OF
AT LEAST TWO CLINICAL TRIALS IN
THE AREA. SHE COLLABORATES WITH
OTHER ACADEMIC LABORATORIES TO
STUDIES THE MODELS OF SUBSTANCE
USE DISORDERS. SPINAL CORD
INJURY, STROKE AND AGING. THE
TITLE OF HER TALK IS CONSIDERING
PRECLINICAL SEX DIFFERENCES IN
THE CONTEXT OF NEUROPATHIC PAIN
AND THERAPEUTIC USE OF KA NAB
-- CANNABINOIDS.
>> THANK YOU SO MUCH FOR THAT
INTRODUCTION. THANK YOU FOR THE
INVITATION TO PRESENT AT THE NIH
PAIN CONSORTIUM, I'VE BEEN
ATTENDING THE CONFERENCE FOR
MANY YEARS AND IT'S REALLY A
THRILL TO PRESENT TO YOU ALL. I
WOULD LIKE TO THANK THE NICH FOR
THEIR SUPPORT OF THE
INVESTIGATION OF CANNABIS FOR
THE TREATMENT OF PAIN. THE
SESSIONS YESTERDAY AND TODAY
HAVE JUST BEEN FANTASTIC AND I
ALMOST WANT TO APOLOGIZE FOR
BREAKING THIS BEAUTIFUL TREND OF
TALKING ABOUT PATIENT CARE AND
SWITCHING GEARS AWAY FROM HUMANS
AND TALKING ABOUT RATS AND MICE
BY HOPEFULLY I CAN CONVINCE YOU
THAT IT'S ALSO INTERESTING TO
INCLUDE RATS AND MICE IN OUR
CONVERSATION I'M A BEHAVIORAL
PHARMACOLOGIST AND I USE RODENT
MODELS OF YOUR PATHIC PAIN
MOSTLY TO TRY TO UNDERSTAND THE
POTENTIAL AND SAFETY MARGINS OF
USING CANNABINOID BASED
THERAPIES.
AND SO I DO WANT TO GIVE YOU A
BRIEF INTRODUCTION INTO THE
TOPIC BY TALKING A LITTLE BIT
ABOUT WHAT IS KNOWN FROM THE
HUMAN LITERATURE REGARDING
POTENTIAL SEX DIFFERENCES IN THE
EFFECTS OF CANNABIS. SO I WILL
TOUCH UPON THAT. AND THEN I
WILL SEGWAY INTO THE PRECLINICAL
RESEARCH THAT I'VE BEEN DOING.
FOR THE LAST FIFTEEN YEARS
LOOKING AT THE EFFECTS OF NIGH
TO CANNABINOIDS. AND THEN I
WILL GET TO MY MOST CURRENT DATA
WHICH ADDRESSES THE POTENTIAL OF
SEX DIFFERENCES IN THE ACTUAL
MODEL OF CHEMOTHERAPY INDUCED
NEUROPATHIC PAIN THAT WE USE IN
THE LABORATORY AND HIGH -- HOW
THAT CAN BE A FACTOR WHEN WE
LOOK AT THE THERAPEUTIC EFFECTS.
AND SO IN ORDER TO GET YOU
INTERESTED IN MY RODENT DATA I
HOPE TO CONVINCE YOU THAT IT'S
INTERESTING TO LOOK AT THE
POTENTIAL SEX DIFFERENCES IN
HUMANS IN REGARDS TO THE EFFECTS
OF CANNABIS AND CANNABINOIDS.
AND SO THE USE OF CANNABIS HAS
BEEN, YOU KNOW, STEADILY ON THE
RISE IN THIS COUNTRY. AS WELL
AS CHANGES IN LEGISLATION THAT
ARE BOTH A RESPONSE TO THAT AS
WELL AS A CAUSE OF THAT
INCREASE. ALONG WITH THE
INCREASE IN USE OF CANNABIS IS
AN INCREASE IN THE PASSAGE OF
LEGISLATION REGARDING MEDICAL
CANNABIS AND IN REGARD TO
MEDICAL CANNABIS ONE OF THE
PRIMARY REASONS THAT PEOPLE
REPORT USING MEDICAL CANNABIS IS
FOR THE TREATMENT OF PAIN AND AS
YOU ARE ALL INTERESTED IN THE
TREATMENT OF PAIN YOU'RE
PROBABLY FAMILIAR WITH THE FACT
THAT MANY FOLKS USE CANNABIS FOR
THIS PURPOSE AND SO IN THE
UNITED STATES, IN 2020, NEARLY
50 MILLION PEOPLE, ABOUT 18% OF
THE POPULATION, AGE 12 OR OVER
WERE ESTIMATED TO HAVE USED
CANNABIS. THERE'S LOTS OF FOLKS
USING CANNABIS FOR A MIX OF
RECREATIONAL AND MEDICAL
PURPOSES. HISTORICALLY THIS
POPULATION HAS BEEN
PREDOMINANTLY MALES. AS
COMPARED WITH FEMALES BUT WITH
THIS RISE OF THE USE OF CANNABIS
BOTH RECREATIONALLY AND
MEDICALLY IN THIS COUNTRY, THERE
HAS BEEN A DRASTIC INCREASE IN
THE RATE OF USE AMONG FEMALES.
FEMALES MAKE UP THE FASTEST
GROWING CONSUMER DEMOGRAPHIC.
AND IT'S BEEN REPORTED THAT
PERHAPS SOME OF THE REASONS THAT
FEMALES USE CANNABIS MAY BE
DIFFERENT THAN REASONS ENDORSED
BY MALES. SO THIS A REALLY
ACTIVE AREA OF RESEARCH
CURRENTLY. IN OUR UNDERSTANDING
OF WHAT POTENTIAL SEX
DIFFERENCES ARE A RESULT OF
USING CANNABIS, MOST OF THE
RESEARCH IN THIS AREA IS FOCUSED
ON THE ADVERSE EFFECTS AS MOST
OF THE HUMAN RESEARCH TO DATE OF
THE EFFECTS OF CANNABIS HAVE
FOCUSED MORE ON ADVERSE EFFECTS
AS OPPOSED TO POTENTIAL
THERAPEUTIC EFFECTS SO WE'LL
TALK A LITTLE BIT ABOUT WHAT HAS
BEEN REPORTED FOR ADVERSE
EFFECTS AND THEN SEGWAY INTO
POTENTIAL ANALGESIC EFFECTS IN
SEX DIFFERENCES. SO THE TITLE
OF THIS SLIDE IS INTERESTING
GIVEN THE TALK THIS MORNING.
I'VE SEEN SEVERAL REPORTS IN THE
LITERATURE OF THE USE OF THE
CANNABIS IS PROBLEMATIC AND
MAYBE A LOADED TERM. AND TALK
ABOUT THE SUBSTANCE USE OF
FEMALES VERSUS MALES BUT JUST TO
GIVE YOU SOME CONTEXT HERE.
MALES DO INITIATE CANNABIS USE
AT A YOUNGER AGE. USE MORE
CANNABIS THAN FEMALES AND ALSO
MORE OFTEN MEET THE CRITERIA FOR
CANNABIS USE DISORDER OR CUD.
BUT, AGAIN, CANNABIS USE AS WELL
AS DIAGNOSIS OF CANNABIS USE
DISORDER IS ON THE RISE IN
FEMALES. RESEARCH HAS SHOWN
SIMILAR TO OTHER SUBSTANCES OF
ABUSE SUCH AS ALCOHOL, PSYCHO
STIMULANTS AND OPIOIDS THERE
ALSO SEEMS TO BE A QUICKER
PROGRESSION FROM RECREATIONAL
USE TO DIAGNOSIS OF CANNABIS USE
DISORDER IN FEMALES AS COMPARED
WITH MALES.
GOING ALONG WITH THIS CONCEPT OF
TELESCOPING IN FEMALES. AND
THEN THERE'S A GROWING
LITERATURE SUGGESTING THAT
FEMALES INDUCE MORE WITHDRAWAL
SYMPTOMS AND ARE MORE LIKELY TO
REPORT COMORBID ANXIETY,
MISDISORDERS AND SUICIDE DALT
RELATED TO MALES BUT I ALSO IN
RESPONSE TO THESE ARTICLES FOUND
OTHER COMMENTARY SUGGESTING THAT
THERE IS A BIAS TOWARD FEMALES
AND THE WAY IN WHICH THEY
DESCRIBE THEIR CANNABIS USE
DISORDER AND THEIR WITHDRAWAL
SYMPTOMS THAT MAY BE SKEWING
THIS. FOLKS ARE INTERESTED IN
THIS POTENTIAL BIAS. THIS IS AN
INTERESTING AREA TO START
LOOKING AT IN THE LITERATURE.
SO TURNING AWAY FROM SO-CALLED
ADVERSE EFFECTS AND FOCUSING
MORE ON CANNABIS AND CANNABINOID
ASSOCIATED ANALGESIA, THERE IS
AN EMERGING FIELD OF FOLKS
STUDYING WHETHER THERE IS A SEX
DIFFERENCE IN RESPONSE TO THE
ANALGESIC PROPERTIES OF CANNABIS
MOST OF THIS WORK IS LED DOCTORS
MEG, COOPER AND RYAN. IN THIS
WORK THEY REPORT WHAT THEY HAVE
SEEN SO FAR IS REALLY VARIABLE.
AND THIS CAN BE DUE TO MANY
REASONS, MANY FOLKS HAVE ALREADY
TOUCHED UPON THE DIFFERENT
REASONS WHY YOU CAN GET
DISPARATE EFFECTS WHEN LOOKING
AT POTENTIAL ANALGESIC RESPONSES
IN MEN AND WOMEN. YOU ADD ON
TOP OF THIS, SORT OF THE
COMPLEXITIES OF CANNABIS. AND
THE FACT THAT CANNABIS IS NOT
ONE PARTICULAR SUBSTANCE BUT IS
USED WITH MANY DIFFERENT ROUTES
OF ADMINISTRATION AND IS
COMPRISED BY ONES OF DIFFERENT
CHEMICALS THIS IS A VERY NASCENT
FIELD IS AND THE RESULTS COMING
OUT OF IT ARE PRETTY VARIABLE.
SO IN ONE STUDY THAT WAS LOOKING
AT LOW TO MODERATE FREQUENCY OF
CANNABIS USE DID REPORT THAT
THERE WERE STRONGER DRUG EFFECT
RATINGS IN FEMALES COMPARED TO
MALE PARTICIPANTS SO PERHAPS
THAT THE FEMALES WERE MORE
SENSITIVE TO THE SUBJECTIVE
EFFECTS OF CANNABIS. BUT
LOOKING AT CANNABIS ANALGESIA
THERE ARE TWO REPORTS THAT IT
MAY BE MORE POTENT IN MALE
PATIENTS OR MALE USERS VERSUS
FEMALES SO IN A POPULATION OF
CANNABIS SMOKERS MALE REPORTED
GREATER ACUTE ANALGESIA COMPARED
TO FEMALES. THESE WERE IN A
COLD PRESSOR TEST. IN AN ACTUAL
PATIENT SETTING IN CANCER
PATIENTS, THAT WERE ALL
REPORTING SIGNIFICANT PAIN
RELIEF WITH USING CANNABIS
BETTER PAIN RELIEF WAS REPORTED
IN MEN AS COMPARED TO WOMEN SO
THIS IS AN EMERGING FIELD AND IF
YOU'RE INTERESTING IN THESE
POTENTIAL SEX DIFFERENCES IN
HUMANS I WOULD DIRECT YOU FIRST
TO THIS REVIEW THAT TALKS ABOUT
THESE STUDIES. I ALSO FOUND
THERE IS AN EHER YENS --
EMERGENCE OF GENDER BASED
STUDIES AS WELL.
SO THE FIELD IS INCORPORATING
GENDER AS WELL AS SEX. NOW TO
TURN MORE INTO MY WORLD OF
STUDYING THIS USING RODENT
MODELS. YOU KNOW, ONE OF THE
REASONS TO USE RATS AND MICE IN
THIS RESEARCH IS TO TRY TO
DECREASE THE AMOUNT OF
VARIABILITY AND HAVE MORE
CONTROL OVER THE
EXPERIMENTATION, POSSIBLY TO
START TO GET AT MORE OF THE
PHARMACOLOGICAL AND BIOLOGICAL
UNDERPINNINGS OF SEX
DIFFERENCES. BUT AS WE KNOW
THERE ARE STILL BIASES IN RODENT
RESEARCH AND OTHER THINGS THAT
WE NEED TO CONSIDER THAT I WILL
TOUCH UPON. THE LEADER IN THE
FIELD OF LOOKING AT SEX
DIFFERENCES FOR CANNABINOIDS IS
DR. REBEKAH, MOST OF THE
PRECRITICAL LITERATURE COMES OUT
OF HER LABORATORY AND LOOKING AT
ANIMAL MODELS OF ACUTE . IT
LOOKS LIKE THEY ARE MORE POTENT
IN FEMALE ROW DENS VERSUS MALE
AND THERE IS A LITERATURE DIVING
INTO SOME OF THE RECEPTOR BASED
MECHANISMS UNDERLYING THIS
INCREASED POTENCY OF
CANNABINOIDS IN FEMALE VERSUS
MALE RODENTS. SO WHAT REMAINS
UNKNOWN? WELL A WHOLE HECK OF A
LOT REMAINS TO BE INVESTIGATED
IN THIS AREA AS YOU CAN IMAGINE.
SO THE FIRST BULLET POINT THAT I
THINK IS VERY IMPORTANT IS THAT
THE MAJORITY OF THESE STUDIES IN
HUMANS AS WELL AS IN ANIMALS TO
DATE AS FOCUSED ON ACUTE ANTI
KNOW SIS RECEPTIVE IN HUMANS
THAT DO NOT HAVE A CHRONIC PAIN
CONDITION. SO I THINK IT'S
IMPORTANT TO UNDERSTAND WHETHER
THERE ARE POTENTIAL SEX
DIFFERENCES IN THE THERAPEUTIC
EFFECTS OF CANNABINOIDS IN
CHRONIC FLIER PATHIC AND/OR
INPOLICEMAN STORY PAIN. AND
THEN WHAT MY LABORATORY FOCUSES
ON AS WELL.
IS IN THESE ANIMAL MODELS OF
CHRONIC PAIN WHAT ARE THE
POTENTIAL THERAPEURAPEUTIC EFFEF
CANNABINOIDS DEVOID OF EFFECTS.
I AM A PAIN RESEARCHER AND MOST
OF MY WORK DOES NOT FOCUS ON
DELTA-9 THC OR CANNABINOID
COMPOUNDS THAT INCLUDE ACTIVITY
I'M INSTEAD IN OTHER
CONSTITUENTS OF THE PLANT OR
CHEMICALS THAT ARE SYNTHESIZED
TO BE DEVOID OF PSYCHO ACTIVITY
AND ABUSED LIABILITY. THE
PRIMARY CANNABINOID THAT I STUDY
IN MY LABORATORY IS CBD THAT HAS
SOME CHARACTERIZED
ANTI-INFLAMMATORY PROPERTIES SO
OUR LAB RAH RARE -- LABORATORY.
THERE ARE OTHER FIE TO
CANNABINOIDS THAT ARE NOW
EMERGING IN THE LITERATURE. ONE
IS QANA BEST OF MY KNOWLEDGE
ROLL OR CBG.
WE HAVE DONE TO INVESTIGATE THIS
IN THE LABORATORY AS WELL AND
THERE IS ALMOST NOTHING KNOWN
ABOUT THE POTENTIAL SEX
DIFFERENCES THAT ARISE FROM CBD,
WHICH IS FASCINATING GIVEN THE
MASSIVE NUMBER OF PEOPLE NOW WHO
ARE USING CBD AND OTHER HEMP
DERIVED PRODUCTS FOR A VARIETY
OF REASONS INCLUDING THE
POTENTIAL TREATMENT OF PAIN SO
I'M JUST GOING TO TALK ABOUT THE
WORK WE'VE DONE IN THE PAST,
FOCUSING ON TESTING CBD AND OUR
MOUSE MODEL OF CIPN OR
MECHANICAL SENSITIVITY AND SO
WE'VE BEEN DOING THIS RESEARCH
FOR OVER FIFTEEN YEARS NOW. WE
WERE THE FIRST LABORATORY TO
DEMONSTRATE THAT IF WE
ADMINISTER CBD TO MICE WE CAN
PREVENT THE DEVELOPMENT OF THIS.
THERE IS A RODENT MODEL THAT IS
SIMILAR TO THE DATA THAT BRIAN
SHOWED YOU YESTERDAY AND SO WE
FOUND THAT CBD CAN COMPLETELY
PREVENT THE DEVELOPMENT OF CIPN
IN MICE. WE STARTED THIS
RESEARCH IN FEMALE MICE. TAXOL
IS A THERAPEUTIC AGENT USED FOR
BREAST CANCER SO WE THOUGHT THAT
FEMALES WERE A RELEVANT SEX TO
STUDY IN OUR MOUSE MODEL. SO
OUR FIRST TWO PUBLICATIONS WERE
DONE EXCLUSIVELY IN FEMALE MICE.
I GOT THE MEMO LATE. THE EARLY
WORK WAS NOT DONE TO ASSESS
POTENTIAL SEX DIFFERENCES. BUT
IN THE FEMALE MICE WE DETERMINED
THAT PACK LA TAXOL REDUCES
SENSITIVITY.
AND THIS CAN BE DONE BY
PRETREATMENT OF QANA WHAT DIAL.
A FURTHER STUDY WHEN I MOVED
FROM THE SCHOOL OF PHARMACY TO
THE SCHOOL OF MEDICINE,
DIFFERENT LABORATORY, DIFFERENT
SIDE OF BROAD STREET IN
PHILADELPHIA.
DIFFERENT FOLKS IN MY LAB DOING
THE EXPERIMENTATION, BUYING THE
MICE FROM A DIFFERENT VENDOR,
ALL KINDS OF THINGS CHANGING
INCLUDING THE SEX OF THE ANIMALS
BUT CBD STILL WORKED. SO PACKLY
TACK SOME PRODUCES SENSITIVITY
AND CBD PREVENTS THAT SO I COULD
SEE FROM THESE DATA THAT CBD
WORKS IN MALES AND FEMALES BUT
AS WE ALL KNOW THAT'S REALLY NOT
THE PROPER WAY TO EXAMINE SEX
DIFFERENCES. SO WE HAVE NOW
MOVED ONTO DIRECTLY COMPARING
THE EFFECTS OF PACLITAXEL AND
FIE TO CANNABINOIDS IN FEMALE
AND MALE MICE LOOKING AT THE
INFLAMMATORY CONSEQUENCES. SO
I'M GOING TO SHOW YOU MOST OF
THE WORK THAT WE ARE NOW DOING
WITH SEX DIFFERENCES WE'VE
DECIDED TO START THE SOLE AND
EXCLUSIVE DIFFER-- SEX DIFFEREN
WORK WITH THE OTHER DRUG.
AN INTERESTING PAPER CAME OUT
FROM MICHELE SEXTON'S GROUP
DEMONSTRATING THAT IN PATIENTS
WHO ARE USING MEDICAL CANNABIS
PRODUCTS TO TREAT THEIR
NEUROPATHIC PAIN THOSE PATIENTS
THAT ENDORSED THE MOST
SUCCESSFUL TREATMENT OF THEIR
PAIN WERE USING CANNABIS
CULTIVARS THAT WERE
SIGNIFICANTLY HIGHER IN THIS FIE
TO CANNABINOID CBG.
SO FOLKS ARE INTERESTING IN
EXPLORING THE EFFECTS OF CBG. I
ALSO WANTED TO HIGHLIGHT HERE OF
MY LAB BYES WHO HAVE BEEN
WORKING ON TESTING CBG IN OUR
MOUSE MODEL OF CIPN.
AND NOT ONLY DID I WANT TO SHOW
A PICTURE OF THEM BECAUSE THEY
BOTH DESERVE A LOT OF CREDIT BUT
BECAUSE HUM BOW IS A FEMALE
INVESTIGATOR AND SHAUN IS A MALE
INVESTIGATOR AND I CAN TELL YOU
THAT TO SUPPORT THE WORK THAT
JEFF AND ROB PUBLISHED THAT WAS
SO FASCINATING THESE TWO
INVESTIGATORS DO GET DIFFERENT
EFFECTS FROM MALE VERSUS FEMALE
MICE IN THE C IPN MODEL TO THIS
ADDS AN EXTRA LAYER OF
COMPLEXITY IN TESTING THE
POTENTIAL OF DIFFERENCES.
SO ALL OF THE DATA I'M GOING TO
SHOW YOU ARE THE DATA CLICKED BY
HIM BOW IN THE LABORATORY AND
SHE'S BEEN WORKING ON THE
PROJECT FOR THE LAST TWO YEARS.
HERE ARE THE BEHAVIORAL DATA
LOOKING AT MALES VERSUS FEMALES
THAT HAVE BEEN TREATED WITH
PACLITAXEL SO I'M A BEHAVIORAL
PHARMACOLOGIST I LIKE TO GIVE
LOTS OF DOSES OF DIFFERENT DRUGS
TO LOOK AT THE RESPONSE
RELATIONSHIP. YOU CAN SEE IN
BOTH FEMALE AND MALE MICE AT 17
AND 14 DAYS THERE IS A DOSE
DEPENDENT INCREASE IN MECHANICAL
SENSITIVITY. IF YOU OVERLAY
THESE GRAPHS, YOU CAN SEE THAT
ON DAY SEVEN, WE SEE A
SIGNIFICANT SEX DIFFERENCE WHERE
THE MALES ARE SENSITIVE AT A
LOWER DOSE THAN THE FEMALES ARE.
AND AT DAY 14, WE SEE A LITTLE
BIT OF A CROSSOVER WHERE WE GET
MALES THAT ARE MORE SENSITIVE AT
THE EARLY DOSES AND FEMALES AT
THE LATER DOSES. SO WE'RE
SEEING SOME INTERESTING SEX
DIFFERENCES IN THE BEHAVIOR. SO
WHAT I WANTED TO DO FROM THIS
DATA IS TO EXAMINE IF WE SEE ANY
NEUROINFLAMMATORY CORRELATES.
ANOTHER SHOUT-OUT TO JEFF AND
ROB AND SOME OF THE FANTASTIC
WORK THAT THEY'VE DONE WE KNOW
THAT THERE ARE POTENTIAL
NEUROINFLAMMATORY SEX
DIFFERENCES THAT CAN EXPLAIN
SOME OF THESE DIFFERENTIAL
RESPONSES TO PAIN. IN FEMALE
VERSUS MALE RODENTS. SO WE
WANTED TO SEE WHETHER WE WOULD
SEE DIFFERENT PATTERNS OF YOUR
IN -- NEUROINFLAMMATION.
THIS WAS AN RTPCR EXPERIMENT
USING BOTH MALE AND FEMALE MICE
FROM TACONIC WITH HUM BOAZ THE
INVESTIGATOR.
WE HAD THE TWO DIFFERENT TIME
POINTS, TISSUE HARVESTED
FOLLOWING PACK LOW TACK SILL
INFLAMMATION.
AND SOMEBODY ASKED A QUESTION
YESTERDAY ABOUT PERHAPS WHERE IN
THE PAIN PATH WEI SEX
DIFFERENCES MIGHT BE ABLE TO BE
IDENTIFIED. WE LOOKED AT THE
CENTRAL SITE.
THE PERRY AC WE DUCTAL GRAY
WHICH IS IMPORTANT IN PAIN
SIGNALLING. AND SO LOOK AT ALL
VARIABLES THAT GAVE US OVER 50
DIFFERENT GRAPHS. ONE OF THE
REVIEWERS IS LIKE YOU'RE LOOKING
AT TOO MANY DIFFERENT THINGS AND
THEY SEEMED DISTURBED BY THAT
BUT I FELT LIKE I COULD HAVE
GONE ON BUT WE ACTUALLY DID LOOK
AT MORE THAN THIS. BUT I FELT
TO GET A BEGINNINGSES OF THE
CLEAR PICTURE THAT WE REALLY HAD
TO LOOK AT ALL OF THESE
DIFFERENT THINGS. SO I AM NOT
GOING TO SHOW YOU 56 GRAPHS.
I'M GOING TO SHOW YOU A SUMMARY
TABLE IF YOU'RE INTERESTED, I
HAVE THE CITATION OF THE
PUBLICATION DOWN ON THE BOTTOM
THERE. BUT TWO OF THE REALLY
INTERESTING THINGS THAT EMERGED
WAS DAY EIGHT IN THE DORSAL ROOT
GANGLION WE SAW SEVERAL SEX
DIFFERENCES IN THE PAIN AND
INFLAMMATION THAT WERE DECREASED
IN MALES OVER FEMALES AND IN
GENERAL, MORE INFLAMMATION
MEASURED IN THE DRG ON DAY EIGHT
IN MALES. IN DAY FIFTEEN, WE
STARTED TO SEE THE EMERGENCE OF
CHANGES IN NEUROINFLAMMATORY
MARKERS IN THE PERIAQUEDUCTAL
GRAY SO ALMOST LIKE THE
INFLAMMATION IS MOVING BUT BY
DAY FIFTEEN IN THE PAG MORE OF
THIS NEUROINFLAMMATION WAS
PRESENT IN THE FEMALES AS
COMPARED TO THE MALES IF YOU
WANT THE GESTALT OF THE
EXPERIMENT THAT WAS THE MOST
INTERESTING TREND IN OUR DATA.
ONE OF THE MORE COME -- COM
COMPELLING SIX DIFFERENCES THAT
WE DID SEE WAS THE CXCL 9.
THERE'S AN INTERESTING
LITERATURE EMERGING WITH CXCL 9
IN PAIN. TWO OTHER MARKERS THAT
I THOUGHT WERE INTERESTING IN
THE PERIAQUEDUCTAL GRAY WERE TRL
4 WHERE WE SAW INCREASES IN
FEMALES AND NOT IN MALES.
SO THAT'S ALL JUST PACLITAXEL,
WHAT HAPPENS WITH CBG? CBG
PRODUCED A BEHAVIORAL EFFECT
TREATMENT WITH CBG PREVENTED THE
DEVELOPMENT OF MECHANICAL
SENSITIVITY ASSOCIATED WITH
PACLITAXEL AND ALSO DECREASED
ANY NEUROINFLAMMATION ANYWHERE
IN EITHER SEX. SO WE SAW LOTS
OF INTERESTING SEX DIFFERENCE
PATTERNS EMERGING IN MICE
TREATED WITH PACLITAXEL AND ALL
OF THOSE WERE AMELIORATED WITH
PRETREATMENT WITH CBG. SO TAKE
HOME MESSAGES, MY TAKE HOME
MESSAGE IS ALMOST ALWAYS IT'S
REALLY COMPLICATED. THAT'S SORT
OF A COPOUT, BUT JUST TO
HIGHLIGHT SOME OF THE THINGS
THAT ARE REALLY CRITICAL IN THIS
RESEARCH, IT'S DEPENDENT
PROBABLY ON THE SEX OF THE
INVESTIGATOR EVEN IN RODENT
STUDIES. IT'S DEPENDENT ON THE
DOSE OF PACLITAXEL. ON THE
NEUROANATOMICAL SITE, ON THE
TIME YOU'RE LOOKING AT AND ON
THE AN LITE AND THAT IS JUST FOR
THE PACLITAXEL DATA ITSELF.
BUT ONE POTENTIAL TAKE HOME
MESSAGE TO ADDRESS SOMETHING
THAT WAS MENTIONED YESTERDAY AS
WELL IS PERHAPS THE SEX
DIFFERENCES IN THE DISEASE OF
CIPN MAY STILL BOTH BE
RESPONSIVE IN BOTH SEXES TO
CERTAIN TREATMENTS SUCH AS FIE
TO CANNABINOIDS.
SO THESE FIE TO CANNABINOIDS ARE
EMERGING AS WHAT I HAVE CALL
THESE EFFECTS.
SO THERE MAY BE A SEX DIFFERENCE
IN THE DISEASE, BUT IF THE FIE
TO CANNABINOIDS ARE ACTIVE AT
BOTH OF THESE MECHANISMS
UNDERLYING THE SEX DIFFERENCES
THAT PERHAPS WE WON'T REALLY SEE
A MEANINGFUL SEX DIFFERENCE IN
WE GET TO THE CLINIC WITH THESE
COMPOUNDS. SO THANK YOU VERY
MUCH FOR YOUR ATTENTION AND I
HOOK FORWARD TO ANSWERING
QUESTIONS AT THE PANEL.
>> THE THIRD AND FINAL SPEAKER
FOR TODAY THIS IS DR. TAMARA
SOMERS IS AN ASSOCIATE PROFESSOR
IN THE DEPARTMENT OF PSYCHOLOGY
AT DUKE UNIVERSITY. SHE IS A
FACULTY MEMBER OF AT THE DUKE
CANCER INSTITUTE. DR. SOCCER --
DR. SOCCER USES MOBILE HEALTH
MODALITIES TO IMPROVE PATIENT
ACCESS.
SHE HAS SEVERAL GRANTS TO
PROMOTE THIS WORK AND
COLLABORATES BOTH NATIONALLY AND
INTERNATIONALLY WITH
INVESTIGATORS INTERESTED IN
DEVELOPING NOVEL APPROACHES TO
BEHAVIORAL AND PSYCHOSOCIAL
MANAGEMENT FOR PATIENTS WITH
CANCER AND OTHER DISEASES.
DR. SOMERS FOUNDED AND CODIRECTS
THE CLINICAL PSYCHOLOGY AND
INTERNSHIP ROTATION PROVIDING
TRAINING AND RESEARCH MENTORSHIP
TO NUMEROUS JUNIOR
INVESTIGATORS. SHE HAS MENTORED
SEVERAL NIH CAREER FACULTY
MEMBERS. HER TITLE TODAY IS
COGNITIVE BEHAVIORAL STRATEGIES
CONSIDERING SEX DIFFERENCE AND
ACCESS. WELCOME.
>> IT'S AN HONOR TO BE HERE WITH
YOU TODAY TO FINISH OUT THE
TALKS. SO SOME OF YOU CAN
ANSWER THIS QUESTION IN YOUR
SLEEP BUT FOR THOSE OF YOU WHO
NEED A REFRESHER COGNITIVE
BEHAVIORAL THERAPY USES THEORY
BASED PRINCIPLES TO HELP
INDIVIDUALS LEARN TO MANAGE
THEIR PAIN, OUR GROUP AND OTHERS
CALL THIS PAIN SKILLS BEHAVING.
THIS WAS DEVELOPED IN THE 60S TO
HELP PEOPLE RECOGNIZE AND CHANGE
NEGATIVE THOUGHT PATTERNS,
BEHAVIORS AND FEELINGS. THESE
PROTOCOLS HAVE BEEN APPLIED TO
SEVERAL PATIENT POPULATIONS WITH
BOTH ACUTE AND CHRONIC PAIN.
HERE'S HOW IT CAN WORK. ONE
MIGHT HAVE THE THOUGHT THAT THIS
PAIN IS TERRIBLE. AND THERE IS
NOTHING AT ALL THAT CAN I DO
ABOUT IT. THIS THOUGHT MIGHT
RESULT IN NEGATIVE BEHAVIOR SUCH
AS BEING GROUCHY WITH OTHERS,
STAYING ON THE BED AND THE COUCH
ALL DAY LONG AND OBVIOUSLY THESE
TWO THINGS CAN LEAD TO NEGATIVE
FEELINGS. PATIENTS CAN OFTEN
FIND THEMSELVES CAUGHT IN THIS
CYCLE. AND EACH OF THESE START
TO INFLUENCE EACH OTHER IN A
NEGATIVE WAY. PAIN COPING CAN
IMPROVE THOUGHTS THAT CAN CHANGE
THIS NEGATIVE CYCLE. THE GOAL
OF PAIN COPING SKILLS (READING).
SO THEY CAN IMPROVE THEIR OWN
PAIN MANAGEMENT SO HERE YOU CAN
SEE A MENU OF SOME OF THE MOST
COMMON SKILLS TAUGHT IN THESE
PROTOCOLS. SOME OF THESE WILL
BE FAMILIAR, OTHERS MAY NOT.
THERE'S PROGRESSIVE MUSCLE
RELAXATION. (READING). THESE
SKILLS ARE TAUGHT THROUGH THE
USE OF PSYCHOSOCIAL PAIN,
EDUCATION, RATIONALE, TEACHING
SKILL DIDACTICS, AND THEN WITH A
LARGE EMPHASIS ON HOME PRACTICE.
COGNITIVE BEHAVIORAL COGNITIVE
BEHAVIORAL PROTOCOLS HAVE
TRADITIONALLY BEEN -- HAVE BEEN
DELIVERED IN WEEKLY SESSIONS
WHERE MULTIPLE SKILLS ARE
TAUGHT. THESE SESSIONS ARE
OFTEN AT THE MEDICAL CENTER, CAN
BE INDIVIDUAL OR GROUP BASED,
CAN BE AN HOUR OR LONGER AND
WERE DESIGNED AND DELIVERED
OFTEN BY PEOPLE WITH A HIGH
LEVEL OF TRAINING. SO SPOILER
ALERT FOR WHAT I WILL TALK ABOUT
IN A BIT IS THAT THESE FEATURES
CAN REALLY LIMIT PATIENT ACCESS
PARTICULARLY FOR PATIENTS WITH
DISEASE-RELATED PAIN. THERE ARE
A NUMBER OF STUDIES THAT HAVE
SHOWN THAT THESE IN-PERSON EIGHT
OR MORE SESSION PROTOCOLS ARE
EFFICACIOUS FOR DIFFERENT PAIN
POPULATIONS. THERE'S AN EARLY
STUDY ON KNEE ARTHRITIS, KNEE
REPLACEMENT SURGERY. SO NOW I
WILL SHARE WHAT WE KNOW WHICH
ISN'T AS MUCH AS I THOUGHT IT
WOULD BE ABOUT SEX DIFFERENCES
AND COGNITIVE BEHAVIORAL THERAPY
FOR PAIN. WHEN WE THINK ABOUT
PAIN COPING SKILLS FOR PAIN IT'S
IMPORTANT TO RECOGNIZE PAST WORK
THAT PROVIDES INFORMATION ON HOW
MALES AND FEMALES MIGHT APPROACH
COPING WITH PAIN DIFFERENTLY.
WORK HAS SHOWN THAT MALES ARE
MORE LIKELY TO USE BEHAVIORAL
DISTRACTION IN PROBLEM FOCUSED
COPING WHEN EXPERIENCING PAIN WE
KNOW THAT FEMALES ARE MORE
LIKELY TO USE POSITIVE SELF
STATEMENT, EMOTION FOCUSED
TECHNIQUES, COGNITIVE
RESTRUCTURING, AND SOCIAL
SUPPORT. THIS INFORMATION CAN
PROVIDE SOME HYPOTHESIS ABOUT
WHAT COGNITIVE BEHAVIORAL SKILLS
MIGHT BE MOST EFFECTIVE FOR
MALES AND FEMALES.
INTERESTINGLY TO MY KNOWLEDGE
THERE HAVE NOT BEEN STUDIES THAT
TRIED TO MATCH SEX BASED COPING
STRATEGIES IN PAIN COPING SKILLS
PROTOCOLS. SO HERE'S THE MENU
THAT I SHOWED YOU EARLIER. WHAT
MIGHT MAKE MORE SENSE IS TO
APPLY THEM IN THIS WAY. PERHAPS
MALES WOULD FIND BENEFIT IN
BEHAVIORAL RELAXATION SKILLS.
WHILE FEMALES MIGHT PARTICULARLY
BENEFIT FROM A GROUP BASED
THERAPY FOCUSING ON COGNITIVE
RESTRUCTURING AND RELATED SKILLS
WITH IMAGERY. THERE'S OTHER
GOOD INFORMATION FROM THE
PSYCHOSOCIAL PAIN LITERATURE
THAT CAN HELP US THINK ABOUT HOW
MALES AND FEMALES MIGHT RESPOND
TO COGNITIVE BEHAVIORAL THERAPY
PROTOCOLS DIFFERENTLY. THERE'S
A LOT OF EVIDENCE THAT PAIN
MANAGEMENT ARE TWO OF THE
LEADING PSYCHOSOCIAL VARIABLES
THAT IMPACT PAIN OUTCOMES.
SELF-EFFICACY FOR PAIN
MANAGEMENT IS THE DEGREE OF
CONFIDENCE, WHICH ONE WHERE THEY
CAN CONTROL THE PAIN WITHOUT
ADDITIONAL MEDICATION, AND PAIN
CATASTROPHIZING REFERS TO ONE
TENDENCY SO THINK ONE IS
HELPLESS IN PAIN AND ASSUME THE
WORST POSSIBLE OUTCOMES. WE
KNOW THAT FEMALES HAVE LESS PAIN
AND HIGHER LEVELS OF PAIN
CATASTROPHIZING. THUS
INCREASING SELF I HAVE IF--
SELF-EFFICACY AND MAY BE
PARTICULARLY IMPORTANT TO PAY
ATTENTION TO IN PROTOCOL IN
FEMALES. SO AS WE FORWARDED I
WOULD LIKE YOU TO KEEP THE
STATISTIC IN MIND. IT SHOWS
THAT 510 CLINICAL TRIALS ON
CHRONIC PAIN NOT RELATED TO
PSYCHOSOCIAL INTERVENTION
FEMALES WERE OVERREPRESENTED.
FOR THE REST OF THE WORK I WILL
PRESENT I MADE A POINT TO
INCLUDE THE STATISTICS ON MALE
AND FEMALE PARTICIPANTS AND YOU
SEE IT IS MIXED SOME OF THEM
CERTAINLY HAVE MORE FEMALES OR
ARE FEMALE FOCUSED BUT SOME OF
THEM HAVE A PRETTY EVEN SEX
DISTRIBUTORS. SO BASED ON THAT,
IT'S GOOD NEWS THAT IT LACKS
LIKE FEMALES ARE MORE LIKELY TO
HAVE IMPROVED PAIN OUTCOMES IN
RESPONSE TO COGNITIVE BEHAVIORAL
THERAPY PROTOCOLS FOR PAIN.
THERE'S ALSO WORK SUGGESTING
THAT MALES MIGHT RESPOND BETTER
TO COGNITIVE BEHAVIORAL THERAPY
PROTOCOLS THAN OTHER BEHAVIORAL
OR OTHER PSYCHOSOCIAL PAIN
APPROACHES. SO WITHIN THIS
CONTEXT WE WILL LOOK AT HOW TO
IMPROVE ACCESS FOR ALL PATIENTS.
I PRESENTED EARLIER THE
TRADITIONAL APPROACH TO
COGNITIVE BEHAVIORAL THERAPY
PAIN PROTOCOLS. AGAIN, THESE
ARE SEVERAL SESSIONS, OFTEN AT A
MEDICAL CENTER THEY INCLUDE
TRAVEL, COST ASSOCIATED WITH
TRAVEL AND PARKING, WALKING INTO
THE MEDICAL CENTER AND ARE OFTEN
DELIVERED BY HIGHLY TRAINED
THERAPISTS WHILE THESE PROTOCOLS
APPEAR TO WORK MUCH OF THE TIME
THE PROBLEM IS THAT THESE
DELIVERY STRATEGIES LEAD TO
PERSISTENT ACCESS BARRIERS
PARTICULARLY FOR PATIENTS WITH
PAIN. THESE CAN BE EXPENSIVE
AND COSTLY. THEY REQUIRE
ADDITIONAL TRIP TO THE MEDICAL
CENTER AND IT CAN BE HARD TO
FIND SOMEONE TRAINED TO DO THESE
INTERVENTIONS. SO AS WITH MANY
PIECES OF OR WORLD FOR BETTER OR
WORSE, LONGER PROTOCOLS ARE
BEING SEEN LESS OFTEN IN MOBILE
AND SHORTER PROTOCOLS ARE BEING
SEEN MORE OFTEN BUT IT'S
IMPORTANT TO THINK ABOUT HOW
THESE WORK AND IF THEY WORK. AS
OUR GROUP INDULGED IN THE
ZEITGEIST WE WERE THINKING HARD
ABOUT PATIENTS WITH CANCER. OUR
FIRST STRATEGY WAS SPURRED BY A
TECHNOLOGICAL ADVANCE IN 2010
WHILE THE FIRST TABLET COMPUTER
WAS INTRODUCED IN 1989 THE IPAD
CAME OUT IN 2010 SO IT IS AT
THIS TIME THAT PERSONAL TABLET
COMPUTERS REALLY BECAME POPULAR
FOR INDIVIDUALS AND THAT PEOPLE
WERE LIKELY TO HAVE THEM IN
THEIR HOMES SO REMOTE DELIVERY
USING VIDEO CONFERENCING SEEMED
LIKE IT MIGHT BE A POTENTIAL WAY
TO INCREASE ACCESS TO THESE
INTERVENTIONS. ALSO IMPORTANT
TO REMEMBER THIS WAS 2010, TEN
GRE
YEARS BEFORE THE COVID-19
PANDEMIC. SO WE LOOKED TO SEE
IF WE COULD GET THE INTERVENTION
AT OUR OFFICE TO A HOUSE AT THE
END OF THE ROAD THAT LOOKED LIKE
THIS. THE OTHER STRATEGY THAT
WE AND OTHERS WERE WORKING ON AT
THE SAME TIME WAS LOOKING AT THE
LITERATURE AND CLINICAL
EXPERIENCES TO REDUCE PROTOCOLS
TO THE SKILLS THAT MIGHT BE MOST
LIKELY TO BE EFFECTIVE AND TO
KEEP PHONE CALLS BRIEF. THESE
ARE THE SKILLS THAT WE HAVE
LANDED ON WITH MOST OF THE
PROTOCOLS THAT WE'VE DONE AND
YOU'LL SEE IN A MOMENT SOMETIMES
WE DO REALLY BRIEF PROTOCOLS AND
SOMETIMES WE DO PROTOCOLS THAT
ARE MORE LIKE 4-6 SESSIONS. IN
A STUDY BY DARNELL THEY EXAMINED
WHETHER TWO HOUR SINGLE SESSION
PAIN MANAGEMENT PROTOCOL
DELIVERED IN AN IN-PERSON GROUP
FORMAT WOULD BE NONINFERIOR TO
AN EIGHT SESSION COGNITIVE
BEHAVIORAL PROTOCOL. WHAT THEY
FOUND WAS THE SINGLE PAIN
MANAGEMENT CLASS RESULTED IN
SIGNIFICANT IMPROVEMENTS ON PAIN
AND MANY PAIN RELATED OUTCOMES
AND THAT THIS WAS NONINFERIOR TO
THE EIGHT SESSION PROTOCOL AT
THREE MONTHS. OUR GROUP HAS
ALSO COMPLETE SEVERAL PILOT
TRIALS FINDING THAT THESE BRIEF
ROT KOLS ARE FEASIBLE AND
ACCEPTABLE AND REALLY POINT TO
HAVING GOOD BENEFITS FOR
PATIENTS THAT ENGAGE IN THEM WE
DID A STUDY TO DETERMINE A
LARGER TRIAL IF A VIDEO
CONFERENCING WOULD SHOW HIGH
ACCEPTABILITY IN A LARGE TRIAL
AND WHETHER IT WOULD BE AS GOOD
AS AN IN-PERSON PROTOCOL THIS
PATIENT IN THE TOP IMAGE HERE IS
WHAT AN IN-PERSON CONDITION
MIGHT LOOK LIKE. HE MAY HAVE
HIS HEAD IN HIS HANDS AFTER THE
HASSLE OF GETTING TO PARKING.
THE BOTTOM IMAGE SHOWS WHAT AN
AT HOME APPOINTMENT CAN LOOK
LIKE FOR A PATIENT. THE
PATIENTS HAD MIXED CANCERS.
THERE WAS AN AVERAGE AGE OF 57
AND ABOUT TWELVE MONTHS OUT FROM
THEIR CANCER DIAGNOSIS.
PARTICIPANTS RANDOMIZED BOTH OF
THESE CONDITIONS HAD FOUR MEANT
TO BE WEEKLY PAIN COPING SKILLS
TRAINING SESSIONS SO THE
FEASIBILITY RESULTS SHOWED THAT
THERE WAS ALMOST TWICE AS MUCH
ATTRITION IN THE IN-PERSON
CONDITION. FURTHER THOSE THAT
DID COMPLETE THE IN-PERSON
CONDITION HAD SIGNIFICANTLY
LOWER ADHERENCE TO STUDY
PROCEDURES SO THEY WEREN'T
GETTING THE INTERVENTION AS IT
WAS INTENDED TO BE DELIVERED.
SO DAYS TO COMPLETION OF THE
INTERVENTION WERE MORE THAN
TWICE AS MUCH. IT TOOK 65 DAYS
TO GET THEM BACK INTO THE
MEDICAL CENTER FOUR TIMES WHERE
THE VIDEO CONFERENCING DID THIS
IN ABOUT 27 DAYS AND AGAIN THIS
IS FOUR SESSIONS SO IDEALLY IT
WOULD BE 28 AND NO MORE THAN 40
DAYS FROM BEGINNING TO END.
THIS TRIAL INCLUDED BOTH MALES
AND FEMALES AND ALLOWED US TO
LOOK AT SOME SEX DIFFERENCES
GIVEN THAT ONLY 28% OF THE
SAMPLE WERE MALE THIS SHOULD BE
SEEN AS DATA. MALES WERE LESS
LIKELY TO ENROLL IN THIS TRIAL
THAN WOMEN WHILE ONLY A TREND
TOWARD STATISTICAL SIGNIFICANCE
THE DROPOUT RATE FOR MALES WERE
HIGHER THAN FOR WOMEN. I THINK
ONE OF THE INTERESTING THINGS
THAT WE LOOKED AT WAS THE
ATTRITION BY SEX AND BY
CONDITION. SO WHAT YOU'RE
SEEING HERE IS IT'S ALL ABOUT
THE SAME EXCEPT WHEN YOU ASK
WOMEN TO COME BACK INTO THE
CANCER CENTER YOU SEE A MUCH
HIGHER DROPOUT RATE THAN AT HOME
AND THIS MAY COME BACK TO THOSE
ISSUES I TALKED ABOUT IN TERMS
OF BURDEN OF TRANSPORTATION,
OTHER RESPONSIBILITIES. SO I
THINK THIS IS A REALLY IMPORTANT
PIECE TO HIGHLIGHT IS THAT IT
LOOKS LIKE IF WE GIVE WOMEN MORE
ACCESS TO THESE INTERVENTIONS
THEY'RE MUCH MORE LIKELY TO
ENGAGE AND FIND BENEFIT. SO FOR
MALES AND FEMALES THAT COMPLETED
THERE WERE CLEAR BENEFITS AND
THERE WERE SOME INTERESTING
BETWEEN SEX DIFFERENCES THAT WE
SAW. SO THIS IS A PAIN
INTERFERENCE MEASURE. THE BLUE
LINE IS THE MALES. MALES
DECREASED IN PAIN INTERFERENCE
FROM PRE TO POST INTERVENTION AT
38% WHILE FEMALES DECREASED IN
PAIN INTERFERENCE AT 13%. PAIN
SEVERITY WAS ABOUT THE SAME. AN
INTERESTING THING TO HEAR ABOUT
THE PAIN INTERFERENCE AND IN
BOTH MALES AND FEMALES HAD ABOUT
THE SAME INCREASE IN
SELF-EFFICACY FOR PAIN
MANAGEMENT WHICH BECOMES REALLY
IMPORTANT BECAUSE WE KNOW THAT
THIS IS ONE OF THE THINGS THAT
DRIVES BETTER OUTCOMES IF WE CAN
CONVINCE PEOPLE THAT THEY CAN
MANAGE THEIR PAIN WE KNOW THAT
THEIR OUTCOMES ARE LIKELY TO BE
BETTER. AND THEN THIS IS
SELF-REPORTED MEDICATION USE.
IN MALES VERSUS FEMALES SO MALES
DECREASE FROM PRE TO
POSTTREATMENT AT ABOUT A DAY PER
WEEK AND FEMALES DECREASED LESS
THAN HALF A DAY A WEEK SO SEEING
A LITTLE BIT OF DIFFERENCES
THERE IN THIS EARLY DATA TO LOOK
AT THIS. SO IN ADDITION TO
INCREASING OUR EYES OF MOBILE
HEALTH DECREASES IN REMOTE
DELIVERY WE WERE EXAMINING --
WE'VE BEEN EXAMINING HOW BRIEF
WE CAN GET THESE INTERVENTIONS
AND STILL HAVE THEM BE
EFFICACIOUS AND PROVIDE BENEFIT.
SO NIH FUNDED SEQUENTIAL TRIAL.
WE RECRUITED 327 WOMEN WITH
BREAST CANCER THAT REPORTED AT
LEAST MODERATE PAIN AND GAVE
THEM TWO DOSES OF PAIN TRAINING.
WOMEN HAD EITHER ONE SESSION OR
FIVE SESSIONS. THE ONE SESSION
PROTOCOL INCLUDED THE PSYCHO
EDUCATION AND RATIONALE AND ALSO
RELAXATION AND IMAGERY AND THEN
LOTS OF ENCOURAGEMENT FOR HOME
PRACTICE. IF THEIR PAIN REDUCED
BY 30% OR MORE WE RERANDOMIZED
THEM TO MAINTENANCE OR NOTHING
AND IF THEIR PAIN DID NOT REDUCE
THEY WERE RERANDOMIZED TO MORE
TRAINING OR MAINTENANCE DOSE.
SO WHILE THE ONE SESSION WENT
INTO A REDUCTION OF 15%. ONE OF
THE INTERESTING FIND SGS IS WE
FOUND THAT SPRIJ PATIENTS THAT
ACHIEVED AT LEAST A PAIN
REDUCTION OF 30% IN BOTH GROUPS,
WERE A SIGNIFICANT NUMBER SO WE
FOUND THAT 53 BANK ACCOUNT OF
THE WOMEN THAT HAD THE PROPERTY
COAL REDUCED THEIR PAIN BY 35%
IN FIVE WEEKS AND STILL 42% OF
THE WOMEN HAD THE SAME
REDUCTION. SO THIS IS
SUGGESTING THAT SOME PEOPLE ARE
GETTING BENEFIT FROM THIS BRIEF
PROTOCOL. PRETTY QUICKLY. WE
ALSO PERFORM COST ANALYSES IN
THE STUDY AND FOUND THAT THE
FIVE SESSIONS COST ABOUT 573
DOLLARS AND THE ONE SESSION WAS
161 DOLLARS. BASED ON RESPONSE,
AGAIN THEY WERE RERANDOMIZED TO
EARLY A MAINTENANCE DOSE OR
NOTHING. WHAT WE FOUND THAT A
THIRD ASSESSMENTINGS, SO THEY
WERE RERANDOMIZED, HAD MORE
INTERVENTION OR NOTHING HERE.
WAS THAT THERE WERE NO
SIGNIFICANT DIFFERENCES BETWEEN
THESE EIGHT CONDITIONS. AND ALL
OF THE CONDITIONS HAD
SIGNIFICANT REDUCTIONS FROM
BASELINE. SO THIS SUGGESTS THAT
PERHAPS GIVING PEOPLE WHAT THEY
NEED REALLY OPTIMIZING TO THE
PERSON PUTS EVERYONE ON A MORE
EVEN PLAYING LEVEL. WHEN
LOOKING AT LONGER TERM OUTCOMES
ABOUT TEN MONTHS FOLLOWING
BASELINE THIS WORK FOUND IN MOST
CONDITIONS GAINES HAD BEEN
MAINTAINED IN REGRESSION TO THE
MEAN WHICH IS TYPICAL AND
BEHAVIORAL WORK WAS MINIMIZED.
WHILE WE KNOW THIS CAN BE
CHALLENGING ANYWHERE. EVEN IN
ACADEMIC MEDICAL CENTERS, WE'RE
SURE ALSO THAT IT'S IMPOSSIBLE
TO ACCESS THESE INTERVENTIONS
FOR PATIENTS FOR THOSE RECEIVING
ONCOLOGY CARE IN MEDICALLY
UNDERSERVED AREAS. ONLY ABOUT
3% OF ONCOLOGISTS PRACTICE IN
RURAL AREAS SO IT IS NOT HARD TO
TRANSLATE THE UNAVAILABILITY OF
COGNITIVE BEHAVIORAL OR PAIN
THERAPISTS THAT WOULD BE
AVAILABLE IN THESE AREAS. SO IF
THE SMART DESIGN MADE YOU DIZZY
AT ALL YOU MIGHT WELCOME THE
SIMPLE TWO ARM RANDOMIZED
CONTROL CONTROL EXAMINING THE
EFFICACY OF FOUR SESSIONS OF
PAIN, COPING SKILLS, COMPARED TO
FOUR SESSIONS OF THE CONTROL
GROUP IN WOMEN WITH BREAST
CANCER AND PAIN RECEIVING THEIR
ONCOLOGY CARE IN MEDICALLY
UNDERSERVED AREAS. SO IN THIS
TRIAL WE HAVE SET UP VIDEO
CONFERENCING KIOSKS AND WOMEN
COME INTO THE CLINIC TO COMPLETE
THE VIDEO CONFERENCING SESSION
WITH A THERAPIST THAT'S AT DUKE.
SO HERE YOU CAN SEE ARE THREE OF
OUR EIGHT CLINICS, THEY'RE MUCH
SMALLER. THAN THE ACADEMIC
MEDICAL CENTERS IN MOST OFTEN IN
VERY SMALL TOWNS OR EVEN IN
RURAL AREAS. SO WE JUST
FINISHED RECRUITMENT FOR THIS
TRIAL AND ARE ABOUT TO GET
EVERYONE THROUGH THE
INTERVENTION SO WE'LL HAVE
OUTCOME DATA SOON BUT WE'RE
HOPING THAT THIS PAIN COPING
SKILLS TRAINING THAT'S HIGHLY
ACCESSIBLE WILL BE EFFICACIOUS
AS WELL FOR THESE WOMEN. SO
FINALLY I WANT TO SHARE ONE LAST
PILOT STUDY LED BY SARA IN OUR
GROUP. THIS IS LOOKING AT
FEASIBILITY OF A FULLY
STANDALONE APP FOR PATIENTS WITH
COLO RECK CALENDAR CANCER. THIS
STUDY RANDOMIZED PATIENTS TO
PAIN PACK, A STAND ALONE APP OR
FOUR WEEKLY SESSION -- VIDEO
CONFERENCING SESSIONS WITH A
THERAPIST SO IT'S COMPLETELY ON
THEIR OWN OR VIDEO CONFERENCING
WITH A THERAPIST. WE CURRENTLY
RECRUITED 45 PARTICIPANTS WITH
62 BEING FEMALE. OUR ATTRITION
HAS BEEN -- YOUR ATTRITION RATE
HAS BEEN LOW TO DATE. ONE OF
THESE HAS BEEN FEMALE AND TWO IS
MALE. WHAT WE'RE HOPING WITH
PAIN PACK IS AT LEAST FOR
SOME -- AND SOME PATIENTS THAT
THIS IS A REALLY HIGHLY
ACCESS
ACCESSIBLE INTERVENTION THAT
WILL HAVE LOW COST AND WE'LL BE
ABLE TO DISSEMINATE IT VERY
WIDELY. SO IN SUMMARY HERE,
JUST SOME AREAS FOR FUTURE
STUDY, CONTINUED OPTIMIZATION OF
COGNITIVE BEHAVIORAL THERAPY,
PROTOCOLS FOR PAIN, IMPROVED
ACCESS, RIGOROUS EXAMINATION OF
SEX DIFFERENCES IN COGNITIVE
BEHAVIORAL THERAPY FOR PAIN
MANAGEMENT. OPTIMIZATION OF
THESE BRIEF PAIN COPING SKILLS,
PROTOCOLS TARGETING SEX
DIFFERENCES AND PURPOSEFULLY TO
RECRUIT AND ENROLL IN THESE
TRIALS CONSIDERING SEX
DIFFERENCES IN RESPONSE TO PAIN
COPING SKILLS OR COGNITIVE
BEHAVIORAL THERAPY FOR PAIN
MANAGEMENT. THANK YOU AGAIN FOR
HAVING ME AND LISTENING ABOUT
THE WORK THAT WE'VE BEEN DOING
AND THANK YOU TO OUR FUNDERS, MY
LONG-TERM MENTORS PROVIDED THE
FOUNDATION FOR THIS WORK AND AN
AWESOME RESEARCH TEAM THAT KEEPS
THIS ALL MOVING.
>> WELCOME, WE'RE READY FOR
QUESTIONS. I WILL LEAD OFF H
HERE. DR. HOFFMAN. FABULOUS
SET OF ARTICLES. THE GIRL WHO
CRIED PAIN AND THEN WENT ONTO
THE WOMEN WHO CRIED PAIN I
REALLY HIGHLY RECOMMEND THAT TO
ANYBODY AT THIS CONFERENCE HERE.
I'M GOING TO GIVE THOSE TO MY
FUTURE STUDENTS WHO COME IN.
WHAT IS THE BOTTOM LINE ON THE
STATE OF DISPARITIES BASED ON
SEX AND THE TREATMENT OF PAIN
AND WHAT DO YOU CONCLUDE AFTER
REVIEWING ALL THE LITERATURE?
>> SO THAT'S THE QUESTION I GET
FROM REPORTERS AND JOURNALISTS
WHEN THEY TALK TO ME. SO I
GUESS I WOULD SEE NOW THAT THERE
IS STILL, I WOULD -- SIGNIFICANT
DISPARITIES IN THE TREATMENT OF
WOMEN FOR PAIN. AND I THINK OF
MOST CONCERN OF THE MOST RECENT
RESEARCH THAT WE'VE DONE IS THE
STUDIES ON BIAS. IMPLICIT BIAS
BECAUSE USING THOSE AVATARS AND
VIRTUAL HUMANS YOU CAN JUST
MODIFY A SINGLE VARIABLE LIKE
SEX. AND REALLY SEE DOES THAT
INFLUENCE DECISION-MAKING. BUT
I WOULD ALSO SEE THAT THERE WERE
TWO VERY SIGNIFICANT STUDIES,
ONE THAT AT SIXTEEN DIFFERENT
HOSPITALS IN THE U.S. AND THREE
IN CANADA THAT SHOWED NO
DIFFERENCE IN THE TREATMENT OF
WOMEN AND MEN. I THINK THERE
ARE PLACES THAT ARE DOING A
BETTER JOB. I THINK A NEXT STEP
IN RESEARCH THAT WILL BE VERY
INTERESTING WILL BE TO GO BACK
TO THOSE HOSPITALS AND SEE, YOU
KNOW, HAVE THEY FOCUSED, HAVE
THEY DONE ANY KIND OF MORE
TARGETED EDUCATION AND
INCREASING AWARENESS ON THE PART
OF HEALTH CARE PROVIDERS ABOUT
TREATMENT OF WOMEN AND MEN FOR
PAIN? SO THAT'S WHAT I WOULD
SEE.
>> OKAY. THANK YOU. I
APOLOGIZE THAT -- I DON'T HAVE A
METHOD I GUESS OF CHECKING
WHETHER QUESTIONS ARE COMING IN
FROM ONLINE. TO DR. WARD, HIGH
DOES THE MECHANISM OF ACTION,
THE FIE TO CANNABINOIDS THAT YOU
STUDY IN THE LAB RELATE TO SEX
DIFFERENCES IN THE RODENT MODELS
OF PAIN?
>> THANK YOU FOR THE QUESTION.
ON THE ONE HAND I MENTIONED IN
THE CONCLUSION SLIDE THAT MANY
OF US THINK OF THESE FIE TO
CANNABINOIDS AS BEING SORT OF
PAN ANTI-INFLAMMATORY AND SO
PERHAPS EVEN IN THE MODEL WHERE
THERE'S A SEX DIFFERENCE THAT
THE CANNABINOIDS MAY BE
EFFECTIVE BUT WITH CBD WHICH I
DIDN'T TALK ABOUT AS MUCH AT THE
END OF MY PRESENTATION ONE OF
THE OBSERVATIONS FROM THE
LITERATURE AS WELL AS FROM MY
LABORATORY IS THAT THERE SEEM TO
AB MORE PREDOMINANT EFFECT OF
CBD ON T-CELL ACTIVATION THAN ON
MICRO GLIAL ACTIVATION AND SO
GIVEN THE WORK OF JEFF MOGUL AND
ROB S. AND SOME OF THE FOLLOW UP
STUDIES FROM OTHER FOLKS THERE
IS A POTENTIAL THAT CBD WITH ITS
REALLY PROFOUND EFFECTS ON
T-CELL ACTIVITY MAY BE
ESPECIALLY EFFICACIOUS IN
FEMALES AGAIN, IF MANY OF THESE
NEUROPATHIC PAIN CONDITIONS IN
FEMALES HAVE A T-CELL DOMINANT
PAIN SIGNATURE. SO THAT'S
SOMETHING THAT I'M PARTICULARLY
INTERESTED IN SEEING FOLKS
FOLLOW UP ON.
>> THANK YOU. DR. SOMERS YOUR
PRESENTATION, YOU ACTUALLY
PRESENTED ON POTENTIAL SEX
DIFFERENCES IN RESPONSE TO
COGNITIVE BEHAVIORAL STRATEGIES
FOR PAIN MANAGEMENT. WHAT MIGHT
BE A STRATEGY FOR DEVELOPING AN
INTERVENTION TARGETED AT EITHER
MALES OR FEMALES?
>> I MEAN, THAT'S A GOOD YES. I
ACTUALLY AM REALLY SURPRISE TO
DO THINK THAT WE ARE TO SEE THAT
WE HADN'T THOUGHT MORE ABOUT
THAT. WE HAVE CLUES FROM THE
LITERATURE THAT THERE'S CERTAIN
SKILLS OR COPING STRATEGIES THAT
GENERALLY APPLY TO MALES OR
FEMALES THAT MAP ONTO THE SKILLS
THAT WE TEACH IN PAIN COPING
SKILLS TRAINING. SO I THINK
THAT WE COULD TEST WHETHER
PROTOCOLS THAT HAVE THOSE
SPECIFIC SKILLS IN THEM MIGHT BE
MORE, YOU KNOW, I THINK THE BIG
THING IS BEING ACCEPTABLE SO
THAT CAN WE GREAT MAYBE
PARTICULARLY MALES TO CONTINUE
WITH THESE INTERVENTIONS AND TO
SEE THE BENEFITS. AND ANOTHER
OBVIOUS ONE SEEMS TO BE GROUP
BASED THERAPIES FOR FEMALES
PERHAPS MIGHT BE MORE RELEVANT
AND INDIVIDUAL THERAPIES FOR
MALES.
>> OKAY. THANK YOU. AGAIN, THE
QUESTION FOR DR. HOFFMAN, --
>> THERE'S PEOPLE IN THE
AUDIENCE.
>> THERE ARE, I SEE, LET'S TAKE
A FIRST QUESTION THEN.
>> THANK YOU FOR GREAT
PRESENTATIONS, THIS QUESTION'S
FOR THE WHOLE PANEL. WHAT ROLE
DO THERAPY PETS OR SERVICE PETS
HAVE IN A MULTIDISCIPLINARY
APPROACH TO CHRONIC PAIN
MANAGEMENT?
>> I CAN ANSWER. TALK A LITTLE
BIT ABOUT THAT. I THINK THERE'S
SOME EVIDENCE THAT THEY'RE
CERTAINLY HELPFUL, DEFINITELY,
FOR EMOTIONAL/BEHAVIORAL PIECES
THAT INFLUENCE CHRONIC PAIN.
WE'RE DOING SOME WORK WITH
INVESTIGATORS AT NORTH CAROLINA
STATE THAT WE'RE TRYING TO
ANSWER THAT QUESTION SO WE HAVE
THERAPY DOGS IN THE CANCER
CENTER. AND WE KNOW CLINICALLY
THAT PATIENTS LOVE WHEN THEY
COME. PARTICULARLY THE
PEDIATRIC PATIENTS SO WE'RE
LOOKING AT THE RESPONSE WHEN WE
HAVE DOGS IN THE ROOM AND MY
INTEREST IS PAIN OUTCOMES
PARTICULARLY AROUND PROCEDURES
SO WE KNOW A LITTLE BIT BUT NOT
A LOT BUT I THINK IT'S A REALLY
PROMISING AREA.
>> DO YOU EXPECT THERE WOULD BE
A SEX DIFFERENCE IN TERMS OF THE
IMPACT ON OXYTOCIN LEVELS OR KOR
SOL LEVELS?
>> I DON'T KNOW IF I KNOW ENOUGH
TO ANSWER THAT. DOES ANYONE
ELSE HAVE A THOUGHT ABOUT THAT
>> NO, BUT I WILL ADD THAT I
THINK -- THINKING ABOUT THOSE
TYPES OF THINGS AND A
POTENTIALLY, YOU KNOW,
TRANSLATIONALLY TO MODEL THAT IN
RODENTS, SOMETIMES PEOPLE HAVE
RODENTS AS PETS BUT WE DON'T
NECESSARILY THINK OF RODENTS AS
HAVING THOSE KINDS OF COMPANIONS
BUT I THINK SOME OF THE DATA
THAT JEFF SHOWED YESTERDAY
SHOWING SEX DIFFERENCES IN
WHETHER ANIMALS DISPLAY PAIN
LIKE BEHAVIOR ALONE VERSUS
SOCIALLY WE CAN MODEL SOCIAL
ACTIVITY AND ACCESS TO SOCIAL
ACTIVITY OR OTHER PLEASURABLE
ACTIVITY IN RODENTS SO THAT
COULD BE SOMETHING THAT, YOU
KNOW, IF YOU'RE TALKING ABOUT
BIOLOGICAL SEX DIFFERENCES AND
WHETHER CERTAIN TYPES OF
ACTIVITIES MAY BE PLEASURABLE
AND DECREASE BEHAVIOR. THAT'S A
NEAT IDEA.
>> THANK YOU.
>> THANK YOU, ALL, FOR THE GREAT
TALKS. I'M A CLINICAL
PSYCHOLOGIST AS WELL. AT
COGNITIVE BEHAVIORAL THERAPY SO
MY QUESTIONS ARE MORE FOR
DR. SOMERS. I HAVE TWO
QUESTIONS. QUESTION NUMBER ONE,
IT SEEMS PERSONALLY, TO AMERICA
IT SEEMS COUNTERINTUITIVE THAT
ADHERENCE WAS LOWER AND I AM
CURIOUS AS TO WHY YOU THINK THAT
WAS AND QUESTION TWO WHEN YOU
TESTED THE SKILLS FOR BRIEF
THERAPIES HAVE YOU FOUND ANY
COMBINATION THAT WAS -- THAT
WORKED SURPRISINGLY WELL LIKE IF
WE ONLY HAVE TWO SESSIONS WITH
SOMEONE, WHAT TWO SKILLS WOULD
YOU KIND OF INTRODUCE?
>> GREAT QUESTIONS. THINGS THAT
WE'RE THINKING ABOUT A LOT SO I
THINK THE ANSWER TO YOUR FIRST
QUESTION'S REALLY ABOUT ACCESS.
SO, YOU KNOW, HOW I THINK ABOUT
THE WOMEN BEING MORE AD
ADHERENT TO THE VIDEO
CONFERENCING.
IS THEY'RE JUGGLING FAMILY AND
WORK.
AND THEY HAVE OTHER
RESPONSIBILITIES TO, YOU KNOW,
THAT THEY ARE MORE LIKELY TO BE
ABLE TO LIKE SET UP -- YOU KNOW,
WE HAD OUR THERAPIST AVAILABLE
AT 8 O'CLOCK AT NIGHT IF THAT'S
WHEN THEY COULD DO THEIR
SESSIONS SO THEY'RE MORE ABLE TO
FIND SOME TIME ALONE TO DO IT AT
THAT TIME. SO I -- DOES THAT
KIND OF GET AT YOUR FIRST
QUESTION? MAYBE ANSWERED IT?
YOU WOULD EXPECT THEM TO BE MORE
AD HEERNT TO THE IN-PERSON.
>> I THINK I MISUNDERSTOOD. I
THOUGHT YOU MEANT ADHERENT TO
ACTUALLY LIKE DOING THE HOMEWORK
PRESCRIPTIONS BUT YOU'RE TALKING
ADHERENT LIKE THEY ATTENDED THE
SESSIONS. GOT YOU. OKAY.
>> GREAT QUESTION SO ADHERENCE
IN THIS CASE WE MEASURED AS
SESSION ATTENDANCE AND THEN ALSO
AS COMPLETING STUDY PROCEDURES.
>> I MISUNDERSTOOD THAT THEN.
THANK YOU.
>> AND I THINK WITH SKILLS THE
THING THAT WE ALWAYS DO FIRST IS
SOME SORT OF RELAXATION SO IF WE
HAVE ONE SESSION WE DO A LITTLE
BIT OF PSYCHO EDUCATION, KIND OF
PRESENT THE COGNITIVE BEHAVIORAL
THERAPY MODEL WHERE THOUGHTS AND
FEELINGS INTERACT WITH PAIN AND
AS WELL AS BEHAVIORS AND KIND OF
GIVE SOME FUN EXAMPLES TO THHEL
THEM THINK ABOUT IT AND DO
RELAXATION ALONG WITH THAT.
WE'VE DONE THESE VERY BRIEF AND
FOUR SESSION WOULD BE OUR NEXT
BRIEF SO THERE'S A LOT TO
UNDERSTAND WHAT SKILL MIGHT WORK
BEST FOR SOME PEOPLE THAN OTHERS
AND TWO OR THREE MIGHT WORK
BETTER THAN ONE. WE'RE DOING
WORK IN THAT AREA TRYING TO SEE
BUT GOOD QUESTION.
>> ALL RIGHT. THANK YOU.
DR. HOFFMAN, YOU HAD MENTIONED
THAT PHYSICIAN GENDER MADE A
DIFFERENCE ON HOW PEOPLE WERE
TREATED AND JUST WAS WONDERING
IF YOU COULD EXPOUND UPON THAT.
>> YEAH, SO SOME OF THE STUDIES
LOOK BOTH AT PATIENT AND
PHYSICIAN SEX AND AT LEAST ONE
OF THE LARGER STUDIES FOUND THAT
FEMALE PHYSICIANS WERE MORE
LIKELY TO ADMINISTER ANALGESIA
THAN MALE OVERALL AND WITH
RESPECT TO OPIOIDS FEMALE
PHYSICIANS WERE MORE LIKELY TO
ADMINISTER OPIOIDS TO FEMALE
PATIENTS AND MALE TO MALE. THEY
DIDN'T REALLY SPECULATE WHY.
>> WAS THERE AN AGE FACTOR.
>> WITH RESPECT TO THE
PHYSICIANS I DON'T THINK THAT
CAME OUT AS SIGNIFICANT. IT WAS
THE SEX OF THE PHYSICIAN THAT
WAS MOST SIGNIFICANT. THAT'S
ANOTHER INTERESTING AREA I THINK
FOR FUTURE RESEARCH. I KNOW
THERE IS GENERALLY ON OTHER
KINDS OF MEDICAL TREATMENT
BUT --
>> SO AMONG ALL YOUR OTHER
CONCERNS YOU HAVE TO WONDER OF
THE GENDER OF THE PHYSICIAN
THAT'S TREATING YOU. WHETHER
YOU'LL GET THE MEDICATION.
>> SEEMS TO BE THE CASE.
>> ONE LAST QUESTION. DR. WARD.
WHAT HAVE YOU FOUND TO BE THE
BIGGEST CHALLENGE IN STUDYING
SEX DIFFERENCES IN YOUR FIELD OF
RESEARCH?
>> YEAH. SO HONESTLY, IT HAS
BEEN THE CONTINUITY OF THE
PERSON IN MY LABORATORY THAT IS
DOING THE RESEARCH. SO THESE
NEUROPATHIC PAIN MODELS AND THE
WAY IN WHICH WE MEASURE THE PAIN
RESPONSE, ALTHOUGH WE DON'T WANT
IT TO BE, CAN BE PRETTY
SUBJECTIVE. AND SO THE
RESEARCHER HAS TO BE
WELL-TRAINED AND EVEN WHEN THE
RESEARCHER IS WELL-TRAINED THERE
ARE DIFFERENCES ACROSS FOLKS IN
MY LAB EVEN WITHIN SEX. SO THEY
RATE THE BEHAVIORS VERY
CONSISTENTLY, YOU KNOW, WITHIN
THEIR OWN STUDIES. BUT THEN IF
SOMEONE -- SO I WORK AT AN
ACADEMIC INSTITUTION. WE HAVE
STUDENTS. I -- MOST OF MY
RESEARCHERS ARE STUDENTS SO
THEY'LL COME IN FOR A SEMESTER
OR A YEAR OR TWO YEARS AND THEN
THEY'LL LEAVE AND SOMEONE ELSE
WILL COME IN. THAT CAN BE
CHALLENGING. IT'S VERY, VERY
IMPORTANT TO PAY ATTENTION TO
THOSE KINDS OF THINGS IN THIS
AREA OF RESEARCH. I THINK
THERE'S A COUPLE OF WAYS THAT
ARE NEW PROCEDURES IN PAIN
RESEARCH TO AUTOMATE BEHAVIORAL
RESPONSES TO PAIN. SO THERE ARE
SOME FOLKS THAT ARE NOW -- SO WE
POKE THE MOUSE'S PAW AND WE
MEASURE THEIR WITHDRAWAL
RESPONSE SO WE HAVE COLLEAGUES
WHO ARE VIDEOTAPIING THE ANIMAL
AND DOING A COMPUTER ANALYZED
MICRO STRUCTURAL ANALYSIS OF THE
RESPONSE WHICH TAKES THE PERSON
OUT OF IT. AND HELPS WITH
CONTINUITY AND I WAS THINKING
THAT THAT COULD ALSO BE, I DON'T
KNOW IF ANYONE YET HAS APPLIED
THAT TO SEX DIFFERENCES OF THE
ANIMAL BECAUSE THE MALE AND THE
FEMALE MICE BEHAVE DIFFERENTLY
WHEN WE PUT THE MOUSE IN THE
LITTLE CUBBY TO STUDY THEM THEY
ALSO BEHAVE. I THINK -- YOU
CAN TELL THE DIFFERENCE.
THAT IS SOMETHING THAT MAY SOUND
A SMALL DETAIL, CAN BE REALLY
CHANNEL -- CHALLENGING IN
MEASURING SEX DIFFERENCES.
BUT THERE'S WAYS TO IMPROVE IT.
>> I SEE NO OTHER QUESTIONS,
AGAIN, I WANT TO THANK THE
SPEAKERS AGAIN TODAY FOR THEIR
PRESENTATIONS.
>> WHAT A GREAT COUPLE OF DAYS.
I CERTAINLY LEARNED A LOT. A
LITTLE OVERWHELMED BY THE WORK
WE NEED TO DO BUT THAT'S WHY
WE'RE HERE IS TO CHART A PATH TO
THE FUTURE. I WANT TO JUST
START OFF BY THANKING FOLKS.
PARTICULARLY DEVON AND DAVID
THOMAS FOR THE CO-CHAIRING THE
CONSORTIUM MEETING THIS YEAR. I
WANT TO ALSO THANK LEAH FOR
COORDINATING THE -- AND
ORGANIZING THE MEETINGS. THE
MODERATORS, THE PANELISTS, THEY
DID A FANTASTIC JOB. CLEARLY A
LOT OF ENERGY, A LOT OF
COMPASSION, AND A LOT OF
PERSISTENCE ON WHAT WE HEARD
TODAY TO GET ANSWERS FROM PEOPLE
SUFFERING FROM PAIN. I ALSO
WANT TO THANK THE CONTRACTORS
AND THE EVENTS STAFF AND A BIG
CONGRATULATIONS TO THE JUNIOR
INVESTIGATORS WHO PRESENTED THE
AWARD AND TO KARLA AND PATTERSON
WHO WON THAT CONTEST BUT THEY'RE
ALL WINNERS IN MY BOOK. I JUST
WANTED TO MENTION A COUPLE OF
THINGS IN CLOSING. THE PAIN
CONSORTIUM HAS BEEN BRINGING
TOGETHER THE MULTIPLE WORK WHO
ALL HAVE PORTFOLIOS IN PAIN,
BRINGING THEM TOGETHER,
COORDINATING THEIR ACTIVITIES
AND IT'S REALLY THAT WORK THAT
WENT ON OVER THE YEARS,
DEVELOPING RELATIONSHIPS THAT I
THINK ALLOWED THE HEAL
INITIATIVE TO BE AS SUCCESSFUL
AS IT HAS TO HELP END ADDICTION.
WAS SET UP BY DR. COLLINS, IT'S
A JOINT EFFORT OF MULTIPLE
INSTITUTES. WITH A MAJOR FOCUS
IN REDUCING SUBSTANCE USE
DISORDERS LED BY NIGH TA AND
REDUCED THE RISK OF ADDICTION
LED BY 14 INSTITUTES AND
SENATORS ARE INVOLVED IN THE
PAIN PROGRAM.
THE THING THAT HAPPENED I THINK,
THE PAIN CONSORTIUM AS I
MENTIONED BROUGHT THE INSTITUTES
TOGETHER, THE HEAL INITIATIVE
BECAUSE IT CAME WITH FUNDING,
REALLY ALLOWED THE GROUP IN THE
PAIN CONSORTIUM TO HAVE GROUPS
THEY NEVER COULD DO PREVIOUSLY.
THESE ARE ALL FOCUSED ON
IMPROVING THE MANAGEMENT OF PAIN
AND DECREASING THE RISK OF
ADDICTION. DEVELOPING NON
ADDICTIVE MEDICATIONS AND TO DO
THE CROSSCUTTING PROJECTS THAT
ARE INVOLVED AND THAT CUT ACROSS
ALL THE PORTFOLIOS THAT NO ONE
INSTITUTE COULD DO BY
THEMSELVES. SOME INTERESTING
EXAMPLES ARE THINGS LIKE WE
HEARD TODAY ABOUT GETTING PEOPLE
WITH LIVED EXPERIENCE IN PAIN TO
COME TOGETHER TO GIVE INPUT TO
THE RESEARCHERS, TO THE
LEADERSHIP HERE AT NIH AND ALSO
TO INCORPORATE THEM INTO THE
LEADERSHIP THEMSELVES. WE ALSO
HAVE MAJOR PROGRAMS IN TRAINING
IN DEVELOPING PAIN RESEARCHES
FOR THE FUTURE AND WE HAVE
PROGRAMS ONGOING BUILDING A DATA
INFRASTRUCTURE FOR PAIN
RESEARCH. SO REALLY I THINK A
VERY IMPACTFUL PROGRAM FOR PAIN
ACROSS THE COUNTRY. THIS YEAR'S
MEETING WAS REALLY POIGNANT IN
TERMS OF POINTING OUT THE
COMPLEXITY OF PAIN. WE HEARD
ABOUT EXPERIMENTS DONE IN
ANIMALS LOOKING AT SEX
DIFFERENCES BUT WE ALSO HEARD
THAT IT'S REALLY THE PAIN
EXPERIENCE INFLUENCED BY SO MANY
THINGS IN A PERSON'S IDENTITY IN
THEIR SOCIAL CONTEXT, I THINK
WE -- THE STORIES ABOUT THE
REFUGEE CHILDREN, FOR INSTANCE,
CAN ONLY IMAGINE HOW THEIR PAPER
EXPERIENCES INFLUENCED BY THEIR
CONTEXT. BUT I THINK THAT
HAPPENS TO ALL OF US. OUR PAIN
EXPERIENCE IS OUR INTERWOVEN
INTO WHO WE ARE AND SO TRYING TO
DEVELOP BETTER THERAPIES, BETTER
WAYS OF MANAGING PAIN, I THINK
ALL THAT HAS TO BE TAKEN INTO
CONTEXT. WE HAVE TO KIND OF
EXPLORE THE SEX DIFFERENCES THAT
WE CAN IN THE ANIMALS AND
CERTAINLY WE'RE GOING FIND
THINGS AND HOPEFULLY SOME OF
THOSE ARE GOING TO BE ACTIONABLE
IN TERMS OF DEVELOPING BETTER
MEDICATIONS OR BETTER WAYS OF
MODULATING PAIN SYSTEMS. BUT
ALSO THE NONPHARMACOLOGICAL
MANAGEMENT OF PAIN AS WE HEARD
PARTICULARLY IN THE SESSIONS
TODAY NEED TO TAKE INTO
CONSIDERATION THE CONTEXT IN
WHICH A PERSON'S COMING TO YOU
WITH THEIR INDIVIDUAL PAIN
EXPERIENCE AND I THINK I WOULD
LIKE TO MAKE A PLEA TO TRY TO
UNDERSTAND WHAT OUTCOMES ARE THE
BEST ONES TO MEASURE? TAKING
IN, WHAT WE HEARD TODAY WOULD
CERTAINLY BE SO IMPORTANT IF WE
HAD SOME MEASURES OF FUNCTION,
OF QUALITY OF LIFE, BECAUSE
THAT'S ACTUALLY WHAT WE'RE GOING
TO BE TRYING TO MOVE AND IMPROVE
ON PARTICULARLY IN PEOPLE WHO
HAVE PAIN THAT WE CAN'T MAKE GO
AWAY. SO IN TERMS OF MANAGING
THEIR PAIN EITHER WITH MEDICINES
OR NOT IT'S GETTING PEOPLE TO
THEIR BEST QUALITY OF LIFE IS
WHAT WE SHOULD BE THINKING ABOUT
DOING. THE FIELD ALSO SUFFERS
FROM THE INABILITY TO ACTUALLY
DOSE PAIN. WE DON'T HAVE THE
PAIN O METER TO BE ABLE TO
NORMALIZE THE SUBJECTS THAT COME
IN IN TERMS OF THEIR DEGREE OF
PAIN.
PERHAPS HOWEVER WE CAN DO BETTER
IN THAT SPACE. LIKE BEING A
LITTLE BIT MORE CLEVER. IN
UNDERSTANDING HOW TO MAKE THOSE
ASSESSMENTS. PARTICULARLY IF WE
CAN CORRELATE THEM WITH QUALITY
OF LIFE OR FUNCTION. SO I THINK
THERE'S A GREAT DEAL TO DO. I
THINK ALL HAVE A LOT TO LEARN
AND WE LEARNED A LOT FROM THE
DIFFERENT FOLKS TODAY AND
YESTERDAY. AND IN TERMS OF
THAT, I WANTED TO MENTION THAT
THE HEAL INITIATIVE ON THE PAIN
SIDE IS GOING TO INSTITUTE A
VERY INTENSIVE STRATEGIC
PLANNING PROCESS, SO PROBABLY GO
OVER THE NEXT YEAR. AND IT'S TO
INFORM THE WORK OF THE HEAL
INITIATIVE WHICH IS NOT ALL OF
THE PAIN AT NIH BUT IT IS THIS
KIND OF CENTRAL FOCUS NOW AS I
MENTIONED BEFORE. AND SO OVER
TIME THERE'LL BE GROUPS,
MULTIPLE WORKSHOPS, GETTING
INPUT FROM PEOPLE WITH LIVED
EXPERIENCE, FROM PEOPLE IN THE
PAIN AND CANCER FIELD, REALLY
TRYING TO REACH OUT AND
UNDERSTAND HOW -- WHAT IS THE
ROADMAP FOR THE HEAL INITIATIVE
MOVING FORWARD. AS MENTIONED.
IT DOESN'T -- THE HEAL
INITIATIVE DOESN'T SUBSTITUTE
FOR WHAT ALL THE INSTITUTES DO
FOR PAIN BUT IT IS A CONVENING
PROGRAM THAT BRINGS THEM
TOGETHER TO ACHIEVE THIS GOAL OF
GETTING BETTER PAIN MANAGEMENT,
BETTER NON ADDICTIVE THERAPIES
AND DECREASING THE RISK OF
ADDICTION. SO LOOK FORWARD TO
THAT, LOOK FORWARD TO YOUR
INPUT. THERE'LL BE LOTS OF
OPPORTUNITIES OVER THE LAST
YEAR. RIGHT NOW WE'RE JUST
DEVELOPING THE COMMITTEE, WE'LL
PROBABLY BREAK UP INTO
SUBCOMMITTEES. WORKSHOPS WILL
BE HELD ON DIFFERENT TOPICS.
AND THEN FINALLY, A ROADMAP WILL
BE BROUGHT BACK TO THE DIFFERENT
COUNCILS PARTICULARLY FOR US,
THE NIDS COUNCIL FOR APPROVAL.
AND THIS WILL THEN INFORM THE
HEAL INITIATIVE GOING FORWARD IN
THE NEXT HOPEFULLY FIVE TO TEN
YEARS. SO WITH THAT I JUST
WANTED TO THANK EVERYONE ONCE
AGAIN AND CLOSE THE MEETING. I
THINK EVERYONE LEARNED A LOT AND
LOOK FORWARD TO WORKING WITH YOU
AGAIN IN THE FUTURE. TAKE CARE.