>> GOOD MORNING, EVERYBODY.
I'M TRISH POWELL, DEPUTY
DIRECTOR OF THE NATIONAL
INSTITUTE ON ALCOHOL ABUSE AND
ALCOHOLISM AND CHAIR OF THE
INTERAGENCY COORDINATING
COMMITTEE ON FETAL ALCOHOL
SPECTRUM DISORDER.
I'M DELIGHTED YOU'VE JOINED US
FOR THE 2024 MEETING OF ICCFASD,
THIS IS THE FIRST TIME IN A
WHILE WE'VE BEEN ABLE TO GATHER
IN PERSON.
THIS IS IN ADDITION TO TWO
EXECUTIVE COMMITTEE MEETINGS
ANNUALLY.
YOU'LL FIND THE PROGRAM TODAY
INFORMATIVE AND STIMULATING, IN
ADDITION TO OUR UPDATES FROM
FEDERAL AGENCIES WE HAVE A
SPECIAL PANEL OF THREE
OUTSTANDING SPEAKERS THIS
MORNING WHOM I'LL INTRODUCE
FOLLOWING OUR AGENCY
INTRODUCTIONS.
I WOULD BE REMISS IN I -- IF I
DIDN'T EXPRESS THANKS TO DR.
TATIANA BALACHOVA, EXECUTIVE
SECRETARY, AND HAS PUT TOGETHER
A GREAT MEETING FOR TODAY IN
ADDITION TO COORDINATING
ACTIVITIES SHE DOES.
I'M GOING TO TURN IT OVER FOR
AGENCY REPRESENTATIVE
INTRODUCTIONS.
>> WELCOME.
HAPPY TO HAVE YOU HERE AND WE
HAVE PEOPLE ONLINE SO WE LOOK
FORWARD TO HAVING A GREAT
MEETING.
AT THIS TIME I WOULD LIKE TO
HAVE INTRODUCTIONS SO WE WILL
BEGIN WITH INTRODUCTION AROUND
THE ROOM, JUST TO SAVE TIME TO
BEGIN WONDERFUL PANEL AFTER
INTRODUCTIONS I WOULD ASK YOU TO
SAY YOUR NAME, AGENCY, WHAT
DEPARTMENT IN THE AGENCY YOU'RE
IN.
I'M TATIANA BALACHOVA, EXECUTIVE
SECRETARY AND SCIENTIFIC
COORDINATOR FOR ICCFASD.
AND THIS IS OUR ANNUAL PUBLIC
MEETING.
>> GOOD MORNING, BILL DUNTY,
PROGRAM OFFICER HERE AT NIAAA
AND SERVE AS OUR INSTITUTE'S
FASD RESEARCH COORDINATOR.
>> GOOD MORNING, FROM THE
NATIONAL INSTITUTE OF MENTAL
HEALTH, PROGRAM OFFICER IN THE
DIVISION OF TRANSLATIONAL
RESEARCH.
>> GOOD MORNING, OFFICE OF
PREVENTION INNOVATION AT SAMHSA,
THANK YOU FOR HAVING ME COME.
>> SHARON NEWBERG BROWN,
CHILDREN'S BUREAU, DEPARTMENT OF
HHS.
>> TOM DONALDSON, NON-MEMBER
GUEST TODAY WITH FASD UNITED.
>> HI, I'M EMMA BALDWIN, AND I'M
HERE WITH FASD UNITED, I'M A
FUNDRAISING DEVELOP, JUST HERE
TO SPECTATE.
>> GOOD MORNING, SONSY FERMIN
HEALTH RESOURCES AND SERVICES
ADMINISTRATION, SENIOR PUBLIC
HEALTH ANALYST, PROGRAM OFFICER
WITHIN THE MATERNAL AND CHILD
HEALTH BUREAU.
>> GOOD MORNING, EVERYBODY,
KATHY MITCHELL FASD UNITED,
SENIOR VICE PRESIDENT FOR
PREVENTION AND RECOVERY.
>> KEN JONES, DEPARTMENT OF
PEDIATRICS, UNIVERSITY OF
CALIFORNIA SAN DIEGO.
I'VE BEEN INVOLVED IN THIS
DISORDER FOR A NUMBER OF YEARS.
FIFTY.
>> WE HAVE MEMBERS ONLINE, SO I
WILL ASK YOU TO INTRODUCE
YOURSELF.
SO I CAN SEE PLEASE NIDA.
CAN YOU INTRODUCE YOURSELF?
I WILL CALL BY AGENCY.
>> JANANI PRABHAKAR, AGENCY
REPRESENTATIVE FROM NIDA.
SORRY, I HOPE CAN YOU SEE ME.
NICE TO SEE YOU ALL.
>> ALL RIGHT.
AND NOW WE HAVE OUR MEMBERS FROM
CMS, PLEASE INTRODUCE YOURSELF.
>> MARTHA SIBLEY, CMS, SOCIAL
SCIENCE RESEARCH SCIENTIST,
ALTERNATE REPRESENTATIVE.
>> OKAY.
WE HAVE OUR GUEST SPEAKERS HERE,
I SEE THERE'S DR. JANINE
CLAYTON, PLEASE INTRODUCE
YOURSELF.
>> GOOD MORNING, EVERYONE.
JANINE CLAYTON, NIH ASSOCIATE
DIRECTOR FOR RESEARCH ON WOMEN'S
HEALTH AT NIH, IN THAT CAPACITY
I DIRECT THE OFFICE OF RESEARCH
ON WOMEN'S HEALTH, DELIGHTED TO
BE HERE WITH YOU ALL TODAY.
>> THANK YOU.
AND WE HAVE INDIAN HEALTH
SERVICE.
>> GOOD MORNING, TINA
PATTARA-LAU OFFICE OF CLINICAL
PREVENTIVE SERVICES, THANK YOU
FOR THE INVITATION TO BE HERE.
>> THANK YOU.
WE HAVE MEMBERS FROM CDC.
PLEASE INTRODUCE YOURSELF.
>> GOOD MORNING, THIS IS
ELIZABETH DANG, CDC IN ATLANTA,
ALTERNATIVE REPRESENTATIVE.
THANKS.
>> OKAY.
DO WE HAVE ANY OTHER MEMBERS
ONLINE?
I DON'T SEE.
DID I MISS SOMEONE?
I'M HERE FROM NICHD.
>> OKAY, NICHD.
GO AHEAD.
>> YEAH, HI, MEGHAN O'NEILL,
MEDICAL CENTER IN INTELLECTUAL
AND DISABILITIES BRANCH.
NICE TO BE HERE.
>> OKAY.
WELCOME.
I ALSO SEE HERE ONLINE, I SEE
ADMINISTRATION FOR CHILDREN AND
FAMILIES.
GO AHEAD.
>> GOOD MORNING, EVERYONE, TAMMY
WHITE, RESEARCH ANALYST,
ALTERNATE REPRESENTATIVE FROM
CHILDREN'S BUREAU ADMINISTRATION
FOR CHILDREN AND FAMILIES.
THANK YOU.
>> ALL RIGHT, THANK YOU.
I HAVE ANOTHER, I HAVE
REPRESENTATIVE FROM CDC NOW
ONLINE.
>> GOOD MORNING, SHIN KIM, AND I
AM FROM THE DIVISION OF
DISORDERS.
>> DO WE HAVE EVERYBODY WHO IS
ONLINE NOW, IF I MISSED YOU
PLEASE RAISE YOUR HAND NOW.
OKAY.
THANK YOU.
HYBRID MEETINGS IS A CHALLENGE,
YOU CAN TELL YOU.
I'M SORRY IF I DON'T SEE YOU
ONLINE.
WITH THAT WE FINISHED
INTRODUCTION OF MEMBERS AND
REPRESENTATIVES, AND I PASS BACK
TO -- OH, YES, I'M SORRY.
YES, I SEE WE DO HAVE THIS
MEETING, WE HAVE TWO AD HOC
MEMBERS WHO WE HAVE NOW ONLINE I
SEE.
PLEASE INTRODUCE YOURSELF.
>> GOOD MORNING, THANK YOU FOR
ASKING ME.
I WEAR A LOT OF HATS, BUT
PRIMARILY AT THIS POINT IN TIME
I MANAGE THE WORK OF THE
INTERNATIONAL ADULT LEADERSHIP
COLLABORATIVE OF FASD
CHANGEMAKERS, APART FROM THAT
I'M A PARENT OF MANY PEOPLE WITH
A GOLD STANDARD DIAGNOSIS FOR
FASD WHO ARE NOW ADULTS.
THANK YOU.
>> WE'RE DELIGHTED TO HAVE YOU
HERE.
NOW REPRESENTATIVES WITH LIVED
EXPERIENCE.
GO AHEAD, INTRODUCE YOURSELF,
OUR AD HOC MEMBER AT ICCFASD.
>> CJ LATKE, DIAGNOSED AT --
OFFICIALLY 5, ACTUALLY I WAS
DIAGNOSED AT SIX WEEKS OLD,
FETAL ALCOHOL SPECTRUM DISORDER,
NOW 40, I'M A FOUNDING MEMBER OF
THE ADULT LEADERSHIP
COLLABORATIVE FASD CHANGEMAKERS,
ADOPTIVE MOM TO ONE,
MOMMY/AUNTIE TO ANOTHER, BOTH
BOYS, AND ONE IS 18, AND ONE IS
11.
BOTH HAVE FETAL ALCOHOL SPECTRUM
DISORDER AS WELL.
>> THANK YOU, CJ.
WE'RE HAPPY TO HAVE YOU AT THIS
MEETING.
THANK YOU.
I THINK WE INTRODUCED EVERYBODY
AND I GO BACK TO MS. POWELL.
>> THANKS.
WELCOME TO EVERYBODY.
WE'RE EXCITED TO HAVE A
FANTASTIC PANEL THIS MORNING, SO
I'M GOING TO INTRODUCE OUR FIRST
SPEAKER WHO HAS BEEN IN THIS
AREA SINCE THE BEGINNING, AND
HAS A LOT TO SHARE WITH US.
I KNOW YOU'RE GOING TO ENJOY HIS
PRESENTATION.
DR. KEN JONES IS DISTINGUISHED
PROFESSOR OF PEDIATRICS, FOR 50
YEARS CHIEF OF THE DIVISION OF
DYSMORPHOLOGY AND TERATOLOGY IN
SCHOOL OF MEDICINE, UNIVERSITY
OF CALIFORNIA SAN DIEGO.
AND DIRECT CENTER FOR BETTER
BEGINNINGS, NOTABLY ONE OF TWO
PHYSICIANS WHO FIRST DESCRIBED
FETAL ALCOHOL SYNDROME IN 1973
WHICH HE WILL DESCRIBE THAT
JOURNEY IN HIS PRESENTATION TO
YOU THIS MORNING.
HE'S CLINICALLY EVALUATED
HUNDREDS OF CHILDREN PRENATAL
EXPOSED TO ALCOHOL IN UNITED
STATES, RISK, UKRAINE, ITALY,
SOUTH AFRICA, SOUTH KOREA,
POLAND AND LED RESEARCH STUDIES
INVOLVING PREGNANT WOMEN,
ENVIRONMENTAL EXPOSURE, BIRTH
AND CHILD OUTCOMES.
FOR 40 YEARS HE DIRECTED THE
BIRTH DEFECTS CLINIC AT UCSD
WHERE HE EVALUATED CHILDREN FROM
THROUGHOUT SOUTHERN CALIFORNIA,
IN 1976 FOUNDED CALIFORNIA
TERATOGEN INFORMATION SERVICE,
NOW REFERRED TO AS MOTHER TO
BABY.
SIMILAR PROGRAMS HAVE BEEN
STARTED THROUGHOUT THE UNITED
STATES, CANADA, EUROPE, UKRAINE,
JAPAN, SOUTH AMERICA, ALL
MODELED AFTER THIS PROGRAM.
HE IS ALSO THE AUTHOR OF
RECOGNIZABLE PATTERNS OF HUMAN
MALFORMATION WHICH IS IN ITS
EIGHTH EDITION.
DR. JONES, IT'S A REAL PLEASURE
TO WELCOME YOU.
>> THANK YOU.
IT'S A PLEASURE TO BE HERE.
SO
BASICALLY, I'M THRILLED HERE TO
BE HERE TODAY, AND TO TALK TO
YOU ABOUT THIS DISORDER.
I'M GOING TO TAKE YOU THROUGH A
LOOK AT FETAL ALCOHOL SPECTRUM
DISORDER.
I'M GOING TO FOCUS ON HOW WE GOT
HERE FROM WHERE WE STARTED IN 1.
GO AHEAD.
THANKS.
ALL RIGHT.
THIS IS WHERE IT ALL STARTED.
THIS IS DR. DAVID W SMITH.
HE WAS A PROFESSOR OF PEDIATRICS
AT UNIVERSITY OF WASHINGTON, I
WAS LUCKY ENOUGH TO BE A
POSTDOCTORAL FELLOW WITH HIM
FROM 1972 TO 1974.
HE WAS MY HERO THEN, STILL IS MY
HERO.
I THINK HE WAS THE MOST CREATIVE
HUMAN BEING I'VE EVER KNOWN.
YOU SEE HIM HERE IN WESTERN
ARIZONA, EASTERN NEW MEXICO, HE
WAS QUITE A MAN.
SO ONE DAY IN EARLY FEBRUARY, OF
1973, HE GOT A CALL FROM A WOMAN
NAMED DR. SHIRLEY ANDERSON, WHO
RAN THE OUTPATIENT CLINIC AT
KING COUNTY HOSPITAL, THE COUNTY
HOSPITAL IN SAN DIEGO, SHIRLEY
SAID TO HIM, DR. SMITH, I'VE GOT
EIGHT CHILDREN DOWN HERE ALL OF
WHOM HAVE BEEN BORN TO CHRONIC
ALCOHOLIC WOMEN AND THEY SEEM TO
LOOK A LITTLE BIT UNUSUAL TO ME.
WOULD YOU BE WILLING TO COME
DOWN AND LOOK AT THEM?
HE SAID, OF COURSE, I'LL BE
DOWN.
AND I WAS HIS FELLOW SO I JUMPED
IN THE CAR WITH HIM AND WE WENT
DOWN THERE.
IT TURNED OUT THAT ABOUT THREE
YEARS PRIOR TO THAT, A PEDIATRIC
RESIDENT BY THE NAME OF CHRISTY
ULOWEN WAS ON CALL AT KING
COUNTY HOSPITAL, ON THE
PEDIATRIC SERVICE, AND SHE GOT
CORNERED BY THE RESIDENT IN
OBSTETRICS WORKING THAT NIGHT.
HE SAID TO HER, CHRISTY, WHAT DO
YOU KNOW ABOUT BABIES BORN TO
ALCOHOLIC WOMEN?
SHE SAID NOTHING.
WHY DO YOU ASK?
HE SAID BECAUSE I'M ABOUT TO
DELIVER SUCH A WOMAN, AND I
REALLY DON'T KNOW QUITE WHAT TO
DO.
CAN YOU FIND OUT WHAT YOU CAN
FIND OUT ABOUT IT AND SHE SAID
SURE, SO SHE RACED DOWN THE
STAIRS, ACROSS THE STREET TO THE
LIBRARY AT KING COUNTY AND
LOOKED UP EVERYTHING SHE COULD
FIND, THIS WAS 1973, ON ALCOHOL
AND ITS EFFECT ON THE UNBORN
BABY AND FOUND ABSOLUTELY
NOTHING EXCEPT IN ONE SHORT NOTE
IN TEXT BOOK OF OBSTETRICS AND
GYNECOLOGY, THE MAIN TEXT BOOK
OF THE DAY, ALCOHOL WAS IN FACT
GOOD FOR THE UNBORN BABY.
BACK SHE RAN, UP THE STEPS,
TALKED TO THE OBSTETRICS
RESIDENT AND TOLD TO HER WHAT
SHE FOUND OUT.
THEY ROLLED THEIR EYES AND
DELIVERED THE BABY, QUITE SMALL
FOR GESTATIONAL AGE,
MICROCEPHALIC, ALSO VERY SMALL
OVERALL.
OVER THE YEARS CHRISTY GOT
INTERESTED IN THIS ISSUE, AN
AMAZING RESIDENT AND DOCTOR.
OVER THE YEARS SHE WAS ABLE
TO -- OVER THREE YEARS WAS ABLE
TO GET EIGHT CHILDREN, TO SEE
EIGHT CHILDREN ALL BORN TO
CHRONIC ALCOHOLIC WOMEN, ALL
SIMILAR TO THE BABY THAT SHE WAS
INVOLVED WITH THE DELIVERY ON.
AND THEN CHRISTY WENT INTO THE
PRIVATE PRACTICE OF PEDIATRICS
IN THE SEATTLE AREA, AND TURNED
THESE PATIENTS, THESE EIGHT
KIDS, OVER TO DR. SHIRLEY
ANDERSON, AT THE OUTPATIENT
CLINIC THERE.
SHIRLEY LOOKED AT THESE KIDS AND
THOUGHT THAT'S OF THEY LOOKED
DIFFERENT.
SHE CALLED DAVE SMITH, AND
THAT'S HOW THIS ALL GOT STARTED.
WE WENT INTO -- THE TWO OF US
WENT INTO THIS ROOM WHICH WAS
HALF THE SIZE OF THIS ROOM, AND
AROUND THE WALLS OF THE
EXAMINING ROOM WERE THESE EIGHT
KIDS.
AND THEY WERE ALL ON THEIR
BIOLOGIC MOTHER'S OR CAREGIVER'S
LAPS, WE WENT FROM ONE TO THE
NEXT TO THE NEXT TO THE NEXT.
HERE ARE FOUR OF THEM.
AND THESE WERE THE KIDS, THE
FOUR KIDS, THAT LOOKED
DIFFERENT.
THAT IN FACT SHIRLEY WAS SEEN
AND THOUGHT WERE LOOKING A
LITTLE DIFFERENT.
NOW, THE OTHER FOUR KIDS THAT WE
LOOKED AT WERE ALSO GROWTH
DEFICIENT AND INTELLECTUALLY
DISABLED, HAD MICROCEPHALY BUT
NOT THIS PATTERN OF MALFORMATION
THESE KIDS HAD.
WE GOT INTO DAVE'S CAR TO GO
BACK TO HIS OFFICE AT THE
UNIVERSITY OF WASHINGTON, HE
LOOKED AT ME AND SAID, KEN, WHAT
DO YOU THINK ABOUT THAT?
I SAID NOT MUCH, DAVE, HOW ABOUT
YOU?
HE SAID, KEN, THIS IS THE MOST
IMPORTANT THING YOU WILL EVER
SEE.
IT'S THE MOST IMPORTANT THING
THAT I HAVE EVER SEEN.
AND HE WAS RIGHT.
HE WAS RIGHT THERE.
SO, THE NEXT WEEK DAVE WENT TO
DAYTON, OHIO, WHERE HE WAS A
VISITING PROFESSOR.
WHILE THERE HE TALKED TO THE
CHIEF RESIDENT IN PEDIATRICS AND
ASKED IF HE HAD EVER SEEN A
CHILD BORN TO ALCOHOLIC WOMAN.
HE SAID A YEAR AGO, I DID.
DAVE SAID, CAN YOU MAKE CONTACT
AND MAYBE HAVE THEM COME IN SO I
CAN TAKE A LOOK.
AND THE RESIDENT CALLED THIS
FAMILY AND THEY CAME DOWN TO
DAYTON AND IT WAS A DEAD RINGER
FOR THESE FOUR KIDS WE'VE SEEN.
WHILE HE WAS AWAY, WE -- I WAS
CALLED OVER TO THE CHILDREN'S
ORTHOPEDIC HOSPITAL TO SEE A
CHILD WITH CONGENITAL HIP
DISLOCATIONS, EXPOSED TO ALCOHOL
DURING PREGNANCY AND WAS A DEAD
RINGER AS WELL.
IN A PERIOD LITERALLY OF TWO
WEEKS WE SAW THESE INITIAL SIX
KIDS, WITH THIS DISORDER.
THE OTHER TWO KIDS CAME FROM
DAVE SMITH'S UNKNOWN FILE.
SO HIS UNPHONE FILE WAS A GROUP
OF CHILDREN THAT HE HAD SEEN
OVER THE YEARS AND I'M NOT
GOING -- I HAVE NO IDEA WHAT THE
TOTAL WAS BUT THERE WERE A LOT
WHO HE DIDN'T KNOW WHAT THE
CHILD HAD.
SO WHAT WE DID WAS PUT IN THE
UNKNOWN FILE THE THREE FEATURES
THAT WERE MOST CONSISTENT WITH
THIS GROUP OF SIX THAT WE HAD
SEEN.
AND SO WE PUT IN A SMOOTH LONG
FILLTRUM, AND VERMILLION BORDER
WITHOUT THIS CUPID'S BOW, I'LL
SHOW YOU IN MORE DETAIL IN JUST
A MINUTE.
AND INTELLECTUAL DISABILITY.
TWO KIDS FELL OUT OF THE
FEATURES, WE LOOKED AT MOTHERS,
BOTH WERE CHRONIC ALCOHOL WOMEN.
WE REPORTED THESE IN " THE
LANCET," AND LET ME JUST SHOW
YOU THIS PATTERN OF ABNORMALITY.
THIS IS THE PATTERN THAT WE SAW.
THESE KIDS WERE GROWTH DEFICIENT
WITH RESPECT TO BOTH GROWTH AT
BIRTH, SO PRENATAL AS WELL AS
POSTNATAL GROWTH DEFICIENCY SO
THEY CONTINUED TO BE SMALL
DESPITE THE FACT THEY WERE NO
LONGER EXPOSED IN ANY WAY TO THE
ALCOHOL, AND THEN MICROCEPHALY,
A FANCY WORD FOR SMALL HEAD
CIRCUMFERENCE AND THEY HAD
TYPICAL FACIAL FEATURES WHICH
I'M GOING TO SHOW IN MORE DETAIL
IN A MINUTE, WHICH INCLUDED
SHORT PALPEBRAL FISSURES, LONG
SMOOTH PHIL TRUM, THIN
VERMILION.
THIS IS MY SECOND BORN SON, HE
DOES NOT HAVE THE FETAL ALCOHOL
SYNDROME BUT I'M GOING TO SHOW
YOU WHAT I -- NO POINTER HERE,
IS THERE?
OKAY.
JUST TO SHOW YOU, AND I'M GOING
TO YELL BUT I'LL WALK OVER HERE
IF THAT'S OKAY.
CAN YOU HEAR ME?
OKAY.
I DON'T KNOW ABOUT THE PEOPLE
ONLINE.
(INAUDIBLE)
I'M GOING TO WALK OUT HERE.
ALL RIGHT.
SO, BASICALLY THIS IS --
(INAUDIBLE)
ALL RIGHT.
SO, THIS IS A NORMAL FACE, TO
SHOW WHAT I MEAN BY THESE
UNUSUAL FEATURES.
THE FISSURE IS FROM INNER CORNER
OF THE EYE TO OUTER CORNER OF
THE EYE, NOT UP AND DOWN, IT'S
ACROSS.
THE FILLTRUM IS FROM HERE TO
HERE, YOU SEE VERTICAL RIDGES
YOU'LL FEEL IN YOURSELF WHEN YOU
RUN YOUR FINGER OVER YOUR
FILTRUM AND CUPID'S BOW OF THE
UPPER LIP WHICH IS SO NORMAL.
THANK YOU.
SORRY.
SO THIS IS WHAT A NORMAL FACE
LOOKS LIKE.
AND NOW I'M GOING TO SHOW YOU A
PICTURE OF A CHILD WITH A FETAL
ALCOHOL SYNDROME.
AND HERE HE IS.
8-YEAR-OLD BOY, YOU CAN SEE --
YOU PROBABLY CAN'T TELL THE
FISSURES ARE SHORT BUT THEY ARE,
HE HAS A LONG SMOOTH FILTRUM,
LACKS VERTICAL RIDGES, YOU CAN
SEE ACROSS HIS UPPER LIP THIN
AND LACKS THE CUPID'S BOW
CONFIGURATION.
IT'S A DISTINCTIVE -- IT'S QUITE
A DISTINCTIVE FACES BUT PRETTY
DISTINCTIVE BUT VERY SUBTLE
ABNORMALITIES.
ABOUT THAT TIME WE WERE ABOUT
FOUR WEEKS AFTER WE HAD
INITIALLY BUILT THIS.
FOUR WEEKS OUT FROM WHEN WE HAD
INITIALLY SEEN THIS DISORDER,
AND DAVE SAID, KEN, WE NEED TO
GET A PSYCHOLOGIST BECAUSE THESE
KIDS ALL HAVE INTELLECTUAL
DEFICIENCY.
AND SO I LOOKED AROUND, AND I
CAME UP WITH THIS LADY, ANN
PICKIWIDZ STROSGOTH, RECENTLY
DIED, DID AS MUCH FOR THIS
DISORDER AS ANYBODY THAT I KNOW.
AND SHE DID THE NEUROBEHAVIORAL
TESTING ON SEVEN OF THESE
CHILDREN, THE CHILD FROM DAYTON,
OHIO, SHE DIDN'T.
AND THIS IS FROM A TABLE IN OUR
FIRST PAPER IN "THE LANCET," IN
1973.
THANK YOU.
ALL RIGHT.
YOU SEE HERE WHAT WE HAVE
CONTINUED TO SEE TODAY, IF YOU
LOOK ACROSS THERE AT I.Q. OR
MDI, YOU SEE THREE OF THESE
CHILDREN ARE INTELLECTUALLY
DISABLED, BUT THE OTHER FOUR ARE
WITHIN THE NORMAL RANGE.
THEY ARE NOT I.Q. SCORES THAT
ARE HIGH BUT CLEARLY WITHIN THE
NORMAL RANGE, THAT HAS CONTINUED
TO BE THE CASE IN INDIVIDUALS
THAT WE SEE WITH THIS DISORDER,
THEIR I.Q. SCORES FREQUENTLY
SOMEWHERE IN THE HIGH 70s AND
LOW '80s BUT FOR THE MOST PART
THESE KIDS DO NOT HAVE I.Q.
SCORES LESS THAN 70.
MAYBE 50% DO BUT THE REMAINDER
DO, AND MAJORITY OF THEM ALSO
ARE NORMAL.
NOW I WANT TO SAY A BRIEF WORD
ABOUT REACTIONS TO RECOGNITION
OF THIS DISORDER.
REACTION, I MUST TELL YOU, QUITE
SURPRISING TO ME BUT SHOULDN'T
BE.
IT WAS DISBELIEF.
I WILL NEVER FORGET GIVING A
TALK SOON AFTER, SOMETIME I
THINK IN MAY, TO THE SOCIETY FOR
PEDIATRIC RESEARCH THAT WAS IN
SAN FRANCISCO THAT YEAR.
AND I WAS SCARED TO DEATH.
I WILL TELL YOU IT WAS THE FIRST
TALK I'VE EVER GIVEN, THERE WERE
ABOUT A THOUSAND PEDIATRICIANS
IN THE AUDIENCE.
I STOOD UP THERE AND GAVE MY
TALK.
I HAD TEN MINUTES TO TALK AND
GAVE MY TALK.
AND I EVEN BECAME MORE SCARED
BECAUSE HANDS SHOT UP ALL OVER
THE AUDIENCE, NOT A PERSON HAD
ANYTHING GOOD TO SAY ABOUT MY
TALK.
EVERYBODY SAID I WAS CRAZY.
DAVE SMITH WAS CRAZY.
THAT THIS WAS CLEARLY A VIRUS,
PEOPLE HAD BEEN DRINKING ALCOHOL
FOR YEARS, HUNDREDS OF YEARS,
AND NOBODY HAD EVER DESCRIBED
ANYTHING LIKE THIS.
SO, IT WAS A GREAT SCARE FOR ME.
AND YET IT CLEARLY WAS NOT -- WE
WERE NOT THE FIRST PEOPLE TO
DESCRIBE THIS DISORDER.
I JUST WANT TO MAKE YOU AWARE OF
A FEW THINGS HERE.
THIS IS BRAVE NEW WORLD.
WRITTEN I THINK IN THE '40s.
AND TWO KIDS ARE TALKING HERE.
IF I CAN FIND IT.
HE'S SO UGLY, BUT I RATHER LIKE
HIS LOOKS.
AND THEN SO SMALL, A GRIM AS,
SMALLNESS WAS SO HORRIBLY AND
TYPICALLY LOW CAST.
I THINK THAT'S RATHER SWEET
ONE FEELS ONE WOULD LIKE TO PET
HIM, LIKE A CAT.
SHE WAS SHOCKED.
SOMEBODY MADE A MISTAKE WHEN HE
WAS IN THE BOTTLE, PUT ALCOHOL
IN THE BLOOD SURROGATE, THAT'S
WHY HE'S STUNTED.
AND IN THE OLD TESTAMENT, JUDGES
CHAPTER 13, VERSE 7, HE SAID TO
ME, YOU WILL BECOME PREGNANT AND
HAVE A SON, YOU MUST DRINK NO
WINE OR ANY OTHER ALCOHOLIC
DRINK, NOR EAT ANY FORBIDDEN
FOOD, FOR YOUR SON WILL BE
DEDICATED TO GOD AS A NAZARITE
FROM THE MOMENT OF HIS BIRTH
UNTIL THE DAY OF HIS DEATH.
SO, THEY WERE WRONG, THIS
DISORDER WAS WELL KNOWN, HADN'T
BEEN CALLED FETAL ALCOHOL
SYNDROME BUT HAD BEEN AROUND
QUITE A WHILE.
PEOPLE STARTED LOOKING AT IT
SERIOUSLY SOON AFTER THAT,
RIGOROUSLY DELINEATED, PATTERN
OF HUMAN MALFORMATION AS WELL AS
NEUROBEHAVIORAL DEPUTY SITS.
IN 2000 ERNIE ABLE IN A PAYABLE
IN ALCOHOL AND ALCOHOLISM STATED
THAT THE FETAL ALCOHOL SYNDROME
DEVELOPED INTO A SOCIAL PROBLEM,
AND THAT IS ACTIVITIES RISE TO A
LEVEL IN WHICH SOMEONE OR SOME
GROUP ATTRIBUTES HARM TO THOSE
ACTIVITIES, CAUSING THE
GOVERNMENT TO STOP THEM AND --
CALLING ON THE GOVERNMENT TO
STOP THEM, I CAN SEE THAT, THAT
MADE SENSE.
BUT THEY SAID IN THE SAME
ARTICLE THAT THE FETAL ALCOHOL
SYNDROME WAS A MORAL -- LED TO A
MORAL PANIC WHICH SEEMED A
LITTLE BIT OVER THE EDGE TO ME.
ON A MORAL PANIC IS ALLEGED
BREAKDOWN IN PUBLIC MORALITY,
HEIGHTENED LEVEL OF PUBLIC
CONCERN, AND I MUST SAY TO YOU
THAT I BELIEVE NOW AND
UNDERSTAND WHY THEY CALLED IT A
MORAL PANIC.
AND MAYBE KATHY WILL TALK ABOUT
THAT.
IT'S DEVELOPED, PEOPLE REACT TO
IT IN HORRIBLE WAYS, I WILL TELL
YOU.
ALL RIGHT.
SO, THAT WAS 1973.
AND NOW I WANT TO TAKE YOU TO
1996.
WHEN THE INSTITUTE OF MEDICINE,
NATIONAL ACADEMIES OF SCIENCE,
DECIDED THEY WANTED TO GET
INVOLVED IN MATERNAL DRINKING,
AND THIS ISSUE, AND SO THEY PUT
TOGETHER A COMMITTEE TO LOOK AT
ALL OF THE LITERATURE FROM 1973
UP TO 1996, AND THEY DECIDED
THAT PRENATAL EXPOSURE TO
ALCOHOL CAUSED A SPECTRUM OF
DEFECTS, NOT ONE THING LIKE THE
FETAL ALCOHOL SYNDROME.
AND SO THEY TALKED ABOUT THIS AS
AN UMBRELLA TERM.
AT LEAST FETAL ALCOHOL SPECTRUM
DISORDER, NOT A DIAGNOSIS BUT AN
UMBRELLA TERM.
AT ONE END OF THE SPECTRUM WAS
FETAL ALCOHOL SYNDROME THAT I
JUST DESCRIBED TO YOU, THEN
PARTIAL FETAL ALCOHOL SYNDROME,
WHICH WAS KIDS WHO HAD SOME
FEATURES OF FETAL ALCOHOL SIPPED
BUT NOT ENOUGH TO SAY IT'S THE
FETAL ALCOHOL SYNDROME.
AT THE OTHER END SPECTRUM
ALCOHOL-RELATED
NEURODEVELOPMENTAL DISORDER.
SO, THIS LATTER, ALCOHOL-RELATED
NEURODEVELOPMENTAL DISORDER, WE
NOW KNOW IS BY FAR THE MOST
COMMON DIAGNOSIS THAT FALLS
UNDER THE UMBRELLA OF FETAL
ALCOHOL SPECTRUM DISORDER.
YOU SEE A LITTLE BOY HERE IN THE
RIGHT SIDE OF THE SLIDE, OF THE
SCREEN, WHO CLEARLY DOES NOT
HAVE THE FETAL ALCOHOL SYNDROME
BUT HAS BEEN VERY SEVERELY
AFFECTED BY ALCOHOL.
YOU CAN SEE PROBABLY HIS
FISSURES OF NORMAL LENGTH,
VERMILION BORDER LOOKS NORMAL,
BUT HIS MOTHER WAS KNOWN TO
DRINK ALCOHOL DURING HER
PREGNANCY AND THAT'S REQUIRED
FOR A DIAGNOSIS OF ARND, ALCOHOL
RELATED NEURODEVELOPMENTAL
DISORDER.
INTELLECTUAL DISABILITIES,
PROBLEMS WITH BEHAVIOR AND
LEARNING WITH THE -- ARE THE
FEATURES.
THEY LACK GROWTH DEFICIENCY AND
FACIAL FEATURE.
NINE OUT OF TEN, THE MOST
IMPORTANT THING, NINE OUT OF TEN
INDIVIDUALS WITH FASD DO NOT
HAVE FAS, THEY HAVE
ALCOHOL-RELATED
NEURODEVELOPMENTAL DISORDER AND
THIS HAS BECOME KNOWN AS THE
INVISIBLE DISORDER.
90% OF KIDS WHO HAVE THIS
DISORDER HAVE NONE OF THE
PHYSICAL FEATURES, DO NOT HAVE
GROWTH DEFICIENCY, AND THE
DOCTOR WHO TAKES A LOOK AT THEM
AND 3 OR 4 YEARS OF AGE HAS NO
CLUE THAT THIS COULD BE RELATED
IN ANY WAY TO PRENATAL ALCOHOL
EXPOSURE BECAUSE THE CHILD DOES
NOT HAVE THESE PHYSICAL
FEATURES.
THIS HAS BECOME A MAJOR PROBLEM
AS FAR AS THIS DISORDER IS
CONCERNED.
IT'S WHY THE VAST MAJORITY OF
KIDS WITH THIS DISORDER ARE NOT
DIAGNOSED WITH THIS DISORDER, OR
IF THEY ARE DIAGNOSED WITH
SOMETHING IT'S AN INCORRECT
DIAGNOSIS.
NOW I WANT TO TELL YOU WHAT
WE'RE DOING NOW OR IN THE
PROCESS OF DEVELOPING NOW IN THE
STATE OF CALIFORNIA, WITH THE
OFFICE OF YOUTH AND COMMUNITY
RESTORATION.
SO, WHAT I'M GOING TO TALK ABOUT
FOR THE REST OF TIME IS NOT
HISSAL, IT'S -- HISTORICAL, IT'S
WHAT'S GOING ON NOW, TO PROMOTE
TRAUMA RESPONSIVE, CULTURALLY
INFORMED SERVICES FOR YOUTH
INVOLVED IN THE JUVENILE SYSTEM
THAT SUPPORT YOUTH'S SUCCESSFUL
TRANSIT TO ADULT LIFE.
WE IN OUR GROUP IN SAN DIEGO ARE
COLLABORATING WITH OYCR TO
DEVELOP A PILOT PROGRAM TO
DIAGNOSE FASD THROUGHOUT
CALIFORNIA, DONE IN SAN DIEGO,
SUBJECTS WILL COME FROM CHILD
WELFARE SERVICES, PROBATION
DEPARTMENT, 100 KIDS FROM EACH
OF THOSE, AND GIVEN THE FACT 90%
OF INDIVIDUALS WITH FASD HAVE
ARND, A RAPID SENSITIVE TESTING
APPROACH TO DIAGNOSIS OF ARND
WILL BE USED.
WE'RE NOT GOING TO WORRY ABOUT
FAS, THAT'S 10% OF THE KIDS.
IF WE CAN GET 90 90% AFFECTED
BY ALCOHOL WE'LL FORGET 10% FAS,
THEY WILL PROBABLY BE DIAGNOSED
BY THEIR PHYSICIAN.
TESTING FOR BEHAVIORAL
IMPAIRMENT OF FASD DOES NOT
REQUIRE A NEUROPSYCHOLOGIST AND
CAN BE DONE BY A TRAINED MEDICAL
PROVIDER LIKE A SOCIAL WORKER IN
TWO HOURS.
ALL RIGHT.
SOMEONE WOULD BE TRAINED TO
ADMINISTER VINELAND ADAPTIVE
BEHAVIOR SCALES AND CBCL, AND
HERE IS THE CRITERIA.
YOU'VE GOT TO RECOGNIZE FASD OR
ARND IN THIS PARTICULAR CASE CAN
BE DIAGNOSED IN TWO WAYS, ONE
WAY IS THE COGNITIVE APPROACH
THAT REQUIRES NEUROPSYCHOLOGIST
TO DO NEUROBEHAVIORAL TESTING
AND PHYSICIAN WHO KNOWS A LOT
ABOUT FASD WHO WILL DO THE
PHYSICAL EXAMINATION, SOMETHING
THAT'S GOING TO PROBABLY TAKE A
LOT OF MONEY THAT'S GOING TO
TAKE A LOT OF TIME, AND THE
NEUROPSYCHOLOGIST FOR ONE
PROBABLY HAS SIX TO EIGHT-MONTH
WAITING LIST AS DOES THE DOCTOR.
SO BASICALLY THAT'S ONE WAY YOU
CAN DIAGNOSE IT.
COGNITIVELY.
THE OTHER WAY YOU CAN DIAGNOSE
IT IS JUST BASED ON THE
BEHAVIORAL IMPAIRMENTS.
THEY INCLUDE IMPAIRMENT IN MOOD
OR BEHAVIORAL REGULATION,
INCLUDE ATTENTION DEFICIT
DISORDER, AND IMPAIRMENT IN
IMPULSE CONTROL.
THIS CAN BE DONE AS I SAID BY
SOMEBODY WHO CAN BE TRAINED TO
DO A VINELAND, TRAINED TO DO A
CBCL.
IN THIS PILOT PROJECT WE'LL LOOK
AT 100 KIDS FROM FOSTER CARE,
100 KIDS FROM PROBATION.
AND THE SAME SUBJECTS THAT WE DO
THIS APPROACH ON WILL ALSO BE
GIVEN TRADITIONAL
NEUROPSYCHOLOGICAL TESTING, AND
WITH THE TWO TESTS PROTOCOLS ON
EACH SUNDAY -- SUBJECT WE HOPE
TO SHOW IT IS AS PROFICIENT AS
TRADITIONAL NEUROPSYCHOLOGICAL
TEST, TO DEVELOP A PROGRAM USED
THROUGHOUT CALIFORNIA TO
DIAGNOSE 90% OF KIDS IN
CALIFORNIA WITH AN FASD.
NOW I WANT TO SAY A WORD ABOUT
PREVENTION, I'M GOING TO BE IN
TROUBLE HERE SO I'M GOING
QUICKLY.
SO HERE ARE THREE STRATEGIES FOR
REDUCTION OF RISKY ALCOHOL USE
IN U.S. WOMEN.
FIRST IS I THINK WE ALL KNOW THE
SURGEON GENERAL'S WARNING,
WARNING LABELS ON CANS AND
BOTTLES, IN BARS AND WHERE
ALCOHOL IS SOLD, AND YOU SEE
THAT ON THE NEXT SLIDE OR A
PICTURE OF THAT HERE ON THIS
NEXT SLIDE.
BUDWEISER CAN.
THE OTHER IS VONS SUPERMARKET IN
SAN DIEGO, SEE THE GOVERNMENT
WARNING AND YOU KNOW BIT.
WOMEN SHOWN IN NUMEROUS STUDIES
KNOW TO BE WELL AWARE OF THESE
WARNINGS.
BUT HAVE BEEN SHOWN TO NOT ACT
UPON THEM.
THUS THEY HAVE NOT CHANGED THEIR
BEHAVIOR BASED ON THESE
WARNINGS.
WHICH IS VERY UNFORTUNATE.
THE SECOND THING I WANT TO
MENTION IS PROJECT CHOICES.
THIS HAS WORKED.
THIS COMES FROM A STUDY
PUBLISHED IN 2003.
AND THE IDEA IS TO REDUCE RISK
OF ALCOHOL-EXPOSED PREGNANCY, A
STUDY OF MOTIVATIONAL
INTERVENTION IN COMMUNITY
SETTINGS, AS I SAID PUBLISHED IN
2003.
IN THIS STUDY THEY EVALUATED A
MOTIVATIONAL INTERVENTION FOR
DECREASING DRINKING AND/OR
INCREASING EFFECTIVE
CONTRACEPTION, IN NON-PREGNANT
WOMEN AT RISK FOR
ALCOHOL-EXPOSED PREGNANCY AND
SHOWED THAT A MOTIVATIONAL
INTERVENTION CAN BE SUCCESSFUL
IN REDUCING RISK FOR AN
ALCOHOL-EXPOSED PREGNANCY IN 69%
OF THE WOMEN BY REDUCING THEIR
ALCOHOL INTAKE, INCREASING THEIR
USE OF EFFECTIVE CONTRACEPTION,
OR BOTH, AND I SUSPECT YOU KNOW
WHAT WORKED THE BEST.
AND THAT WAS NOT TO REDUCE THEIR
ALCOHOL CONSUMPTION BUT TO USE
EFFECTIVE CONTRACEPTION AND THE
WORD "EFFECTIVE" IS CLEARLY AN
ISSUE HERE.
AND THEN THE THING I REALLY WANT
TO STRESS AS FAR AS PREVENTION
IS CONCERNED, DECREASING THE
TIME BETWEEN CONCEPTION AND
PREGNANCY AWARENESS.
I THINK IF WE COULD DO THIS,
THIS WOULD REALLY CHANGE THE
PLAYING FIELD AS FAR AS THIS
DISORDER IS CONCERNED.
THIS IS A STUDY THAT WAS
PUBLISHED IN 2017 FROM
AUSTRALIA, BUT THERE ARE A
NUMBER OF STUDIES LIKE THIS THAT
HAVE BEEN PUBLISHED.
SO THE AVERAGE GESTATIONAL AGE
AT THE TIME OF PREGNANCY
AWARENESS IN THIS COUNTRY AND IN
AUSTRALIA WAS 5.5 TO SIX WEEKS.
THIS IS THE BIG ISSUE HERE, THIS
IS FANTASTIC, IRRESPECKIVE OF
WHERE PREGNANCY WAS STOPPED OR
NOT THE VAST MAJORITY OF WOMEN
STOPPED OR DECREASED DRINKING
ALCOHOL AFTER PREGNANCY
AWARENESS.
WHEN THEY FOUND OUT THEY WERE
PREGNANT THEY FOUND OUT THEY
STOPPED DRINKING BUT DIDN'T HAVE
UNTIL 5.5 TO 6 WEEKS INTO THE
PREGNANCY, SUGGESTS PROMOTING
EARLY PREGNANCY AWARENESS COULD
BE MORE EFFECTIVE THAN PROMOTING
ABSTINENCE, THE FORMER RESULTS
IN REDUCTION OF ALCOHOL
CONSUMPTION.
THIS IS SOMETHING THAT IS
EXCITING, THIS IS CALLED THE
OURA RING, I DON'T KNOW HOW MANY
ARE FAMILIAR.
YOU SEE IT ON THE INDEX FINGER
USED TO MONITOR YOUR SLEEP,
HEART RATE, ENERGY LEVEL, AND
NOW TO DOCUMENT THE TIME OF
CONCEPTION.
PRELIMINARY DATA REPORTED FROM
30 PREGNANCIES OF CONTINUOUS
BODY TEMPERATURES TAKEN ONCE
EVERY MINUTE, 24 HOURS A DAY,
RECORDED FROM ONE OF THESE OURA
RINGS FOR PASSIVE PREGNANCY
DETECTION, AS TEMPERATURE DATA
ABLE TO SPOT A UNIQUE PATTERN OF
TEMPERATURE INCREASE AROUND THE
TIME OF CONCEPTION THAT IS
CONSISTENT WITH KNOWN RISES IN
PROGESTERONE IN EARLY PREGNANCY
AND IS GREATER THAN THAT SEEN
DURING THE LUTEAL PHASE OF
MENSTRUAL CYCLE.
ALL 30 PREGNANCIES SHOWED CLEAR
TEMPERATURE INCREASE FOLLOWING
SELF-REPORTED CONCEPTION
IDENTIFIABLY HIGHER THAN
INCREASE THAT TYPICALLY OCCURRED
DURING LUTEAL PHASE.
AS NIGHT TIME TEMPERATURE DATA
HELPED IDENTIFY PREGNANCY EARLY,
5.5 DAYS AFTER CONCEPTION, THIS
WAS 9 DAYS BEFORE THESE
INDIVIDUALS RECEIVED A POSITIVE
AT-HOME TEST, FIVE WEEKS EARLIER
THAN MOST WOMEN RECOGNIZED THEY
ARE PREGNANT.
I THINK DOING THIS AND PURSUING
THIS APPROACH WOULD BE
INCREDIBLE.
I'LL SAY A WORD ABOUT
INTERVENTION.
I'M GOING TO GO QUICKLY.
YOU KNOW, WE GET A REALLY
APPROPRIATELY SO, WE REALLY RUN
INTO A LOT OF PROBLEMS AND
CERTAINLY I DO IN TERMS OF THE
FACT THAT I WILL TALK ABOUT THIS
DISORDER AND THEN PEOPLE WILL
SAY, WELL, WHAT KIND OF
INTERVENTIONS DO YOU HAVE, WHAT
CAN BE DONE AS FAR AS HELPING
THIS DISORDER?
IT'S GREAT TO IDENTIFY THESE
KIDS BUT THEN WHAT?
SO, WHAT I WANT TO SAY IS
THERE'S SOME DARN GOOD
INTERVENTIONS THAT ARE OUT THERE
RIGHT NOW.
AND INTERVENTIONS, DOING
INTERVENTIONS AND DEVELOPING
INTERVENTIONS I THINK IS A HUGE
PART OF WHAT'S GOING ON RIGHT
NOW.
SO, THIS IS -- I'M GOING TO
SUMMARIZE.
THESE ARE -- THIS PROGRAM
FAMILIES MOVING FORWARD
DEVELOPED BY HEATHER CARMICHAEL
OLSON, THIS APPROACH IS
EVIDENCE-BASED INTERVENTION TO
HELP FAMILIES RAISING CHILDREN
AFFECTED BY PRENATAL ALCOHOL
EXPOSURE WITH OR WITHOUT FETAL
ALCOHOL SPECTRUM DISORDER FASD
DIAGNOSIS.
AND I'M NOT -- PROBABLY MOST OF
YOU HEARD ABOUT HEATHER AND
SHE'S DOING A PHENOMENAL JOB AND
DID A PHENOMENAL JOB IN THIS
PROGRAM, REALLY FABULOUS.
THIS IS A PROGRAM CALLED MATH
INTERACTIVE LEARNING EXPERIENCE
BY CLAIRE COALS AND JULIE KABLE
AT EMORY, DESIGNED TO IMPROVE
THE CHILD'S MATHEMATICAL
KNOWLEDGE AND SKILL, CHILDREN
COMPLETE SIX WEEKS OF ONE-TO-ONE
TUTORING, USING SPECIFICALLY
ADAPTIVE MATERIALS, AND PARENTS
RECEIVE TRAINING ON BEHAVIORAL
REGULATION TECHNIQUES TO
OPTIMIZE THE CHILD'S READINESS,
BOTH OF THOSE PROGRAMS HAVE BEEN
VALIDATED.
THE THIRD IS A PROGRAM THAT ANDY
TORZOGE TOP LEFT DEVELOPED,
ANIMAL ASSISTED THERAPY,
SOCIALIZATION WITH ANIMALS WHICH
HELPED INDIVIDUALS STRUGGLING
WITH INTERACTING WITH OTHERS,
SPONTANEOUS SOCIAL SITUATIONS,
DUE TO ANXIETY WHERE OTHER
ISSUES, AND I CAN TELL YOU SHE
DOES MAGIC WITH KIDS WITH THIS
DISORDER IN TERMS OF LITTLE
ANIMALS, THIS IS A MINIATURE
HORSE, YOU SEE A BABY RABBIT ON
THE BOTTOM.
I CAN'T BELIEVE WHAT SHE CAN DO
WITH THESE KIDS.
LAST SLIDE, A CONTROVERSIAL
ISSUE WITHOUT QUESTION.
I GIVE A LOT OF TALKS IN
SOUTHERN CALIFORNIA ABOUT THIS
DISORDER.
AND I TELL PEOPLE THAT THIS
DISORDER IS MORE COMMON THAN
AUTISM SPECTRUM DISORDER.
I TELL THEM THAT THERE'S NOT A
SAFE LEVEL OF DRINKING DURING
PREGNANCY.
I TELL THEM THAT ALCOHOL IS THE
DRUG OF ABUSE THAT HAS THE
GREATEST IMPACT ON FETAL
DEVELOPMENT.
WHICH BLOWS THEM AWAY WHEN I
TELL THEM, NO, IT'S FAR MORE
DANGER TO THE DEVELOPING FETUS
THAN MARIJUANA AND
METHAMPHETAMINE AND COCAINE AND
ALL THE REST OF THEM.
YOU CAN WRAP THEM ALL IN A BAG
AND NOT -- THEY DON'T HOLD A
CANDLE TO ALCOHOL IN TERMS OF
ITS EFFECTS ON THE UNBORN BABY.
PREVALENCE IS BETWEEN 1.1 AND 5%
OF SCHOOL AGE CHILDREN ACROSS
THE U.S. SO IN SOME AREAS IT'S 1
OUT OF 20 KIDS, IN SAN DIEGO
COUNTY FIRST AND SECOND GRADE
STUDENTS, THE PREVALENCE IS
2.3%, THAT'S 1 OUT OF EVERY 44
KIDS.
AND I WILL TELL YOU AS I'M ABOUT
MIDWAY THROUGH THAT LIST, I SEE
THEIR EYES START TO ROLL BACK.
THEY ARE BORED SILLY BY WHAT I'M
TELLING THEM.
HOWEVER WHEN I SAY TO THEM 24%
OF THE ADOLESCENTS INCARCERATED
AT THE JUVENILE HALL HAVE BEEN
EXPOSED, I GET THEIR ATTENTION,
THE CRIMINAL JUSTICE SYSTEM IS
THE MOST EFFECTIVE WAY TO MAKE
PEOPLE AWARE OF THIS DISORDER.
THANK YOU.
>> THANK YOU VERY MUCH.
WE'LL TAKE QUESTIONS AFTER ALL
PRESENTATIONS WITH PANEL.
NEXT SPEAKER I WILL INTRODUCE.
>> THAT WAS FANTASTIC.
NOW WHAT YOU'RE DOING TO MAKE
LIFE BETTER AND THE HISTORY.
NEXT SPEAKER IS KATHY MITCHELL,
SENIOR VICE PRESIDENT OF FASD
PREVENTION AND RECOVERY
SERVICES, FASD UNITED.
SHE SERVED AS VICE PRESIDENT AND
SPOKESPERSON FOR FASD UNITED,
FORMERLY NOFAS FOR 24 HOURS,
MASTER OF HUMAN SERVICES DEGREE,
LICENSED CLINICAL ALCOHOL AND
DRUG COUNSELOR, SHE SERVED AS
PRINCIPAL INVESTIGATOR AND
PROJECT OFFICER FOR GOVERNMENT
PROJECTS THAT AIMED TO PREVENT
FASD, REDUCE STIGMA IN FAMILIES
AND INDIVIDUALS LIVING WITH
FASD.
SHE'S TAUGHT AT GEORGETOWN AND
NORTHWESTERN MEDICAL SCHOOLS,
SPECIAL COMMITTEE OF THE WORLD
HEALTH ORGANIZATION DEVELOPING
GUIDELINES FOR THE
IDENTIFICATION AND MANAGEMENT OF
SUBSTANCE USE DISORDERS IN
PREGNANCY.
IN 2004 FOUNDED INTERNATIONAL
BIRTH MOTHER MENTORSHIP PROGRAM,
CIRCLE OF HOPE.
IN 2020 FOUNDED RECOVERY MOTHERS
ANONYMOUS, A NOTED INVITED SPEAK
OTHER FETAL ALCOHOL SPECTRUM
DISORDERS, WOMEN AND ADDICTION,
STIGMA AND HAS PRESENTED FOR
OVER THREE DECADES NATIONALLY
AND GLOBALLY.
IN 1990 TESTIFIED TO CONGRESS AT
THE FIRST HEARING ON FAS, FAE,
IN 1992 AND 1994 TESTIFIED,
RESULTING IN WARNING LABELS,
CO-AUTHORED OR AUTHORED 23
PUBLISHED PAPERS, CONTINUES TO
SPEAK AT CONFERENCES AND PROVIDE
TRAINING AND SUPPORTS CIRCLE OF
HOPE SPEAKERS BUREAU, PARTNERS
WITH AMERICAN COLLEGE OF
OBSTETRICIANS AND GYNECOLOGISTS
IN SPEAKING AT GRAND ROUNDS AT
MEDICAL FACILITIES ACROSS THE
U.S. WHICH GOES A LONG WAY,
AGAIN, IN RAISING THE AWARENESS
OF THE PREVALENCE AND SEVERITY
OF THIS DISORDER.
SO, WELCOME, AND THE PODIUM IS
YOURS.
>> WHAT AN HONOR TO BE HERE AND
FOLLOW KEN JOHNS. -- JONES.
WE ALL LOVE KEN.
THAT WAS AMAZING.
WHAT RIDE IT'S BEEN, HUH ?
I'M GOING TO GO THROUGH IDEAS
AND STORIES, AND, YOU KNOW, I'VE
BEEN ALSO WORKING IN THIS ISSUE
FOR A LONG TIME.
SO IT'S LIKE THEY BROUGHT ALL
THE OLD GUYS OUT OF THE CLOSET
TODAY, I GUESS, KEN, I'LL SPEAK
FOR MYSELF.
BUT ANYWAY, WHAT A RIDE IT'S
BEEN.
I'LL SAY THIS.
WE HAVE COME A LONG WAY, BUT OH
MY GOSH, WE CAN DO SO MUCH MORE.
WE CAN DO SO MUCH MORE.
WE TALK ABOUT THIS, DR. JONES
AND I, JUST HOW MANY PEOPLE
JUST -- JUST THE DISCONNECT.
WE COME TO GREAT MEETINGS, AND
THEN PEOPLE MOVE ON WITH THEIR
LIVES.
AND, YOU KNOW, THERE'S THAT
DISCONNECT, FORGETTING ABOUT IT.
I DON'T FORGET ABOUT IT, BUT I
AM A BIRTH MOTHER, AND LIVE WITH
A DAUGHTER, WHOSE LIFE IS
AFFECTED EVERY SINGLE DAY BY THE
FACT THAT I DRANK DURING
PREGNANCY.
I LOVE THIS QUOTE BY MAYA
ANGELOU.
WORDS ARE THINGS, THEY GOT ON
THE WALLS, GET IN YOUR
WALLPAPER, IN YOUR RUGS AND
UPHOLSTERY AND CLOTHES, AND
FINALLY INTO YOU.
THAT'S EXACTLY THE EXPERIENCE I
FOUND WITH WOMEN WITH THIS LIVED
EXPERIENCE AND I'VE NEVER MET,
AND I'VE BEEN AT THIS NOW, IN
LONG-TERM RECOVERY, FROM ALCOHOL
AND SUBSTANCE USE DISORDER,
COMING UP ON 40 YEARS.
I'VE KNOWN THOUSANDS OF WOMEN
WITH THIS LIVED EXPERIENCE, AND
I HAVE NEVER MET ONE WOMAN WHO
PURPOSELY DAMAGED HER OWN UNBORN
BABY.
THERE'S MANY REASONS FOR THIS.
THE PRIMARY REASON FROM MY
EXPERIENCE IS THAT WE'RE NOT
GOOD AT ASSESSING FOR SUBSTANCE
USE DISORDERS, INTERVENING, AND
GETTING THEM INTO TREATMENT
BECAUSE GUESS WHAT, TREATMENT
WORKS.
BECAUSE THOSE ARE THE MOST
AT-RISK PEOPLE, NOT TO SAY
SOMEBODY WHO DOESN'T HAVE A
SUBSTANCE USE DISORDER MIGHT
HAVE AN UNFORTUNATE CIRCUMSTANCE
OF DRINKING AT THE WRONG TIME
BUT FOR THE MAJORITY PEOPLE I'VE
MET THAT HAVE A CHILD THAT HAS
MEASURABLE EFFECTS, THEY ARE
PEOPLE WITH THE LIVED EXPERIENCE
OF HAVING AN ALCOHOL OR
SUBSTANCE USE DISORDER.
THE STIGMA THING IS A BIG DEAL.
I WAS ON THE FIRST FAS, FAE WE
CALLED IT BACK THEN.
FETAL ALCOHOL EFFECTS, TASK
FORCE.
DONNA SHALALA APPOINTED ME TO
THE TASK FORCE.
I GOT TO TESTIFY AT A COUPLE
HEARINGS
THE FIRST ON FETAL ALCOHOL
SYNDROME, SECOND ON WARNING
LABELS.
I GOT A CHANCE TO TELL MY STORY,
TO EFFECT CHANGE.
IT'S JUST UNBELIEVABLE FOR ME
HAVING THAT LIVED EXPERIENCE TO
FEEL LIKE, WELL, AT LEAST
SOMETHING GOOD CAME OUT OF IT.
DURING THOSE EARLY DAYS, THE
FIRST TIME I EVER MET DR. KEN
JONES, I SAID, YOU KNOW, WE
REALLY NEED TO CHANGE THE NAME
OF THAT.
I THINK YOU OUGHT TO CHANGE IT
TO SMITH AND JONES SYNDROME.
REMEMBER?
NO, NO, NO.
I SAID YEAH, YEAH.
BECAUSE GUESS WHAT, IT'S REALLY
HARD TO WALK AROUND THE GROCERY
STORE AND TELL PEOPLE THAT YOU
HAVE A CHILD WITH FETAL ALCOHOL
SYNDROME.
SO PEOPLE WILL SAY, OH, YOU HAVE
A DISABLED DAUGHTER?
OH!
YEAH, WHAT DOES SHE HAVE?
AND, YOU KNOW, I'LL SAY, WELL,
SHE HAS FETAL ALCOHOL SYNDROME.
BLESS YOUR HEART, YOU ADOPTED
HER?
NO, NO, NO, I DRANK WHEN I WAS
PREGNANT.
YOU GET THE POINT.
WHEN PEOPLE KNOW YOU'RE THE
BIRTH MOTHER, YOU DRANK, THIS
GOES ON, BY THE WAY, MY DAUGHTER
IS NOW 51, LIVES IN A GROUP
HOME, SALISBURY, MARYLAND.
AND WHEN THE PROVIDERS FIND OUT
SHE HAS FETAL ALCOHOL SYNDROME,
AND THAT I'M THE BIRTH MOTHER,
OH BOY, THE GOSSIP STARTS.
AND THEY START TO TREAT YOU AS
IF YOU ARE MUCH LESS THAN THEY
ARE.
MUCH LESS.
THAT YOU'RE A TERRIBLE MOTHER, A
TERRIBLE HUMAN BEING.
SO THAT'S THE EXPERIENCE.
IT'S A REALLY TOUGH THING TO
CARRY AROUND.
SO, THE STIGMA ISN'T BECAUSE WE
MIGHT HURT SOMEBODY'S FEELINGS.
I BELIEVE IT'S THE REASON WHY
WE'VE GOTTEN FAR BUT WE HAVEN'T
GOTTEN WHERE WE SHOULD BE,
BECAUSE THE STIGMA IS SO
PROFOUND, DOCTORS DON'T WANT TO
DIAGNOSE IT, I'VE KNOWN TWO
REALLY AMAZING PEDIATRICIANS,
ONE IN A TRIBAL COMMUNITY, ONE
IN WASHINGTON, D.C., AND SHE IT
A MOBILE VAN AND WOULD GO TO
HIGH RISK AREAS IN WASHINGTON,
D.C., AND BOTH TOLD ME, POINT
BLANK, I WILL NEVER DIAGNOSE A
CHILD WITH THAT.
I'M LIKE, WHY?
I DIDN'T UNDERSTAND.
AND THEY TOLD ME THE REASON IS
BECAUSE THOSE CHILDREN WOULD BE
TREATED LESS THAN, THEY WILL
THINK THEY CAN'T LEARN, BUT THE
FAMILIES WILL SUFFER THE
OUTCOME.
IT'S GOING TO REALLY DAMAGE THE
FAMILIES.
THAT'S A PROBLEM.
YOU KNOW, I WAS PART OF THE
EARLY DAYS AT FASD UNITED.
THE NATIONAL ORGANIZATION ON
FETAL ALCOHOL SYNDROME.
I WAS THERE, IN THE EARLY DAYS,
SOME OF THE PUBLIC HEALTH
MESSAGES THAT WE WOULD USE, I
WOULD ALWAYS CRINGE.
I WOULD SIT IN A LOT OF THESE
MEETINGS, AND IT WOULD BE LIKE I
WOULD FEEL LIKE LITTLE KNIVES
GOING INTO ME.
OH, YOU KNOW?
FAS OCCURS WHEN A PREGNANT
MOTHER DRINKS DURING PREGNANCY.
YOU KNOW, STAB ME AGAIN.
IT'S HARD TO HEAR WHEN YOU HAVE
THAT BECAUSE YOU WANT TO SAY
INSIDE, OH, BUT I DIDN'T KNOW!
MY CHILD WAS BORN BEFORE KEN'S
PAPER CAME OUT.
WE DIDN'T KNOW, AS FAR AS I
KNEW.
WINE MADE THE BABY'S BLOOD
BETTER, THAT'S WHAT I WAS TOLD.
WE DIDN'T KNOW YOU SHOULDN'T
DRINK ALCOHOL.
SO, ANYWAY, SO THE STIGMA AND
BIAS IS A REALLY BIG DEAL, AND
WE'VE COME REALLY FAR WITH THAT.
THANKS TO FUNDING THAT CAME OUT
THROUGH THE CDC, TO ADDRESS SOME
OF THE ISSUES AROUND STIGMA.
AND I HAD AN OPPORTUNITY, WE HAD
AN OPPORTUNITY TO WORK WITH
PATRICK CORRIGAN, REALLY THE
STIGMA GURU, AND HE DID THESE
LARGE STUDIES LOOKING AT HOW THE
GENERAL PUBLIC AND HOW
HEALTHCARE PROVIDERS KIND OF
VIEWED WOMEN WITH THIS LIVED
EXPERIENCE, AND FOUND IT WAS
JUST OFF THE CHARTS.
HE WAS AMAZED, I'VE NEVER SEEN
ANYTHING LIKE THIS, MORE BLAME
AND DISDAIN AND FEELING LIKE
THEY OUGHT TO BE, YOU KNOW,
LOCKED UP AND PROSECUTED FOR
WHAT THEY HAVE DONE, YOU KNOW,
WHEN THEY WERE COMPARED TO WOMEN
WITH CRIMINAL HISTORIES OR
MENTAL HEALTH HISTORIES.
BUT THE REAL BIG DEAL IS THAT
WHEN WE HAVE AN ISSUE THAT IS
STIGMATIZED, WHAT HAPPENS IS
THERE'S LESS MONEY AVAILABLE.
THERE'S LESS RESOURCES, IT'S AN
ISSUE THAT, OH, IT JUST AFFECTS
THOSE PEOPLE THAT WE DON'T CARE
ABOUT.
SO WE DON'T NEED TO PUT A LOT OF
MONEY.
IS THAT REALLY A THING?
WHERE DOES THAT HAPPEN?
I'VE HEARD ALL KINDS OF
DEROGATORY COMMENTS THAT WON'T
COME OUT OF MY MOUTH RIGHT NOW,
BUT -- SO, JUST SUCH OFFENSIVE
TERRIBLE LIKE IDEAS ABOUT WHO
THIS HAPPENS TO.
AND IT'S ALWAYS ROOTED IN THIS
BIAS AND STIGMA AND KIND OF VERY
CLEAR TO ME THAT, OH, THOSE ARE
THOSE PEOPLE.
THOSE ARE THOSE PEOPLE.
AND SO I'M GOING TO CHALLENGE
EACH OF YOU TODAY, YOU HAVE A
POSITION OF POWER.
YOU CAN REALLY MAKE A
DIFFERENCE.
I KNOW THERE'S PUSHBACK.
I KNOW.
I KNOW SOME OF YOU PERSONALLY
AND I HAVE SEEN YOU FIGHT THE
GOOD FIGHT, TRYING TO GET MORE
RESOURCES, MORE SERVICES, MORE
ATTENTION PAID TO THIS.
AND THEN YOU GET NEW PEOPLE TO
COME INTO YOUR AGENCY THAT DON'T
KNOW WHAT IT IS, AND NOW WE'VE
GOT TO TRIED TO INDICATE
A GAIN -- TO EDUCATE AGAIN.
KEEP PUSHING.
IF YOU KNOW ABOUT THIS, YOU MAY
BE THE ONLY PERSON WILLING TO
PUSH FOR CHANGE BECAUSE THIS IS
SOMETHING WE CAN DO SOMETHING
ABOUT.
IT IS CONTINUING TO AFFECT MORE
AND MORE PEOPLE, AND I THINK
PERSONALLY IT'S WORSE THAN IT'S
EVER BEEN, AND I'LL TELL YOU WHY
IN A FEW MOMENTS HERE, WHY I
THINK THAT.
AND, YOU KNOW, HOW WE REALLY --
OOPS, SORRY.
I'M THE WORST WITH TECHNOLOGY.
BUT HOW WE DEAL WITH PEOPLE THAT
ARE STIGMATIZED GROUPS, THE
FIRST THING WE DO WHEN WE WANT
TO GET CONTROL, WE WANT TO GET
CONTROL OF THEM, WE TAKE THEIR
CHILDREN FROM THEM.
AND THAT'S THE FIRST STEP THAT
WE DO.
AND THE WAY THAT WE CONTROL
THEM.
WE BEGIN TO LOCK THEM UP AND
THROW THEM OUT OF SYSTEMS OF
CARE THAT MIGHT IMPROVE THEIR
LIVES.
SO WE HAVE SYSTEMS OF CARE THAT
ARE BUILT SO THAT THEY WON'T BE
SUCCESSFUL.
AND, YOU KNOW, THAT WOULD
INCLUDE SCHOOLS, THAT INCLUDES
TREATMENT CENTERS, EVEN INCLUDES
RESIDENTIAL HOUSING, IT INCLUDES
SHELTERS, ENVIRONMENTS LIKE
THAT.
ALL OF THESE HUMAN SERVICE
AGENCIES HAVE RULES AND
REGULATIONS WHICH THEY HAVE TO
HAVE, YOU KNOW, BUT WHAT HAPPENS
IS BECAUSE THERE'S NO
RECOGNITION THAT, OOH, THIS
PERSON'S BRAIN WORKS
DIFFERENTLY, MAYBE WE NEED TO
CHANGE HOW WE'RE STRUCTURED,
RATHER THAN HAVING A SET OF
RULES THAT HE MUST FOLLOW OR
WE'RE GOING TO KICK THEM OUT
BECAUSE THAT'S KIND OF THE WAY
IT WORKS IN MOST PLACES.
AND WE ALSO HAVE SYSTEMS OF CARE
IN THE HEALTHCARE ENVIRONMENT
WHERE WE'RE NOT ROUTINELY STILL
SCREENING AND PROVIDING BRIEF
INTERVENTION, THEN WE MADE A
GREAT -- WE HAD GREAT STRIDES IN
SBIR AND SBI, WHAT HAPPENED TO
REFERRAL TO TREATMENT?
WE DON'T PRACTICE THAT PART.
I WAS ACTUALLY AT AN STD CLINIC
IN BALTIMORE, DOING A WORKSHOP
THERE, FOR THE STAFF, AND
DIRECTLY ACROSS THE STREET WAS A
PROGRAM FOR WOMEN, PREGNANT
WOMEN, EVEN WOMEN WITH CHILDREN,
THE CAP PROGRAM.
I SAID, WELL, WHEN YOU HAVE
WOMEN THEY CLEARLY HAVE
ADDICTION PROBLEMS, YOU SEND
THEM THERE, SO COOL YOU'VE GOT
THIS PLACE, JUST WALK ACROSS THE
STREET.
OH, NO, WE NEVER DO THAT.
I SAID YOU NEVER DO THAT?
NO, THAT'S NOT THE MODEL.
LIKE THAT'S NOT THE MODEL?
OH, SO, I'VE LEARNED ALONG THE
WAY, BUT EVEN WHEN IT'S NOT THE
MODEL DO THE RIGHT THING FOR THE
HUMAN BEING.
THAT'S WHAT I WANT TO SAY.
DO THE RIGHT THING FOR THAT
PERSON.
BECAUSE IF THAT PERSON DOESN'T
TAKE THE TIME WHEN CLEARLY SHE'S
GOT TRACKS UP AND DOWN HER ARMS,
AND SHE'S IN THIS STD CLINIC AND
NEEDS TREATMENT, WHY WOULDN'T
YOU?
TO ME, IT'S JUST -- IT'S MIND
NUMBING, AFTER SO MANY YEARS.
SO LET ME JUST -- A QUICK STORY,
PERSONAL STORY.
BY THE WAY, I KNOW HUNDREDS --
NO, THOUSANDS OF THESE STORIES.
I WOULD LOVE TO HAVE TIME TO
TELL YOU THOUSANDS OF STORIES.
I WILL TELL YOU OVER THE YEARS I
HAVE BECOME A SECRET KEEPER.
I HAVE WOMEN COME UP TO ME THAT
WHISPER IN MY EAR AND CRY,
WHETHER IN RECOVERY MEETINGS,
TWELVE-STEP RECOVERIES WHEN I
SPEAK PUBLICLY, AND THEY GIVE ME
THEIR SECRETS, TELL ME THINGS
ABOUT THEIR ABORTIONS, THEY TELL
ME THINGS ABOUT THEIR INFANT
DEATHS, THEY TELL ME WHEN THEY
ARE 70-SOME YEARS OLD ABOUT
THEIR CHILDREN THAT PROBABLY HAD
FASD BUT THEY NEVER HAD THE
COURAGE TO GET THEM DIAGNOSED
BECAUSE SHE DIDN'T WANT TO LIVE
WITH THAT KNOWLEDGE.
YOU KNOW, PEOPLE COME UP AND
TELL ME AND CONFESS.
YOU KNOW WHAT?
I'M OKAY WITH THAT.
I'LL TAKE THAT.
I HUG THEM, TELL THEM I LOVE
THEM, BECAUSE THIS IS A TOUGH
THING.
IT AFFECTS SO MANY PEOPLE.
IT IS AFFECTING A LOT OF PEOPLE.
SO, NOBODY WANTS TO HARM THEIR
OWN BABY.
THERE I AM, ABOUT TO BECOME A
VILLAIN.
I'M A 16-YEAR-OLD TENTH GRADER
THERE.
THAT IS PREGNANT IN HIGH SCHOOL.
I GREW UP IN AN ALCOHOLIC HOME.
MY DAD WAS AN ALCOHOLIC.
THERE WERE SEVEN KIDS.
MY PARENTS WERE REALLY GOOD
PARENTS.
WE WENT TO PAROCHIAL SCHOOL.
YOU KNOW, MY FATHER WAS VERY
SUCCESSFUL, HE DEALT WITH A
DISEASE THAT WAS STIGMATIZED,
AND INVISIBLE, AS FAR AS THE
TREATMENT.
JUST LIKE FASD.
SO, HE WOULD GO TO LOCAL
HOSPITALS AND THE DOCTOR WOULD
DO WHATEVER HE NEEDED TO DO TO
TREAT HIM, BUT THERE WAS NO
DETOX OR MENTION THAT, YOU
KNOW -- BECAUSE WE DIDN'T KNOW
THOSE THINGS BACK IN THOSE DAYS.
WE DO A LOT BETTER TODAY THAN WE
USED TO.
AND THIS IS A PICTURE OF ME
GIVING BIRTH, RIGHT AFTER I GAVE
BIRTH TO MY THIRD CHILD, SO I
GOT PREGNANT IN TENTH GRADE,
DROPPED OUT OF SCHOOL, DIDN'T
FINISH HIGH SCHOOL.
THERE WAS A LOT OF CHAOS.
GOOD HOME BUT FULL OF CHAOS
BECAUSE OF ALL THE DRINKING OF
MY DAD, AND MY MOTHER WAS NOT AN
ALCOHOLIC, TRIED TO KEEP THE
FAMILY TOGETHER.
BUT I LIKE THIS PICTURE BECAUSE
I HAD MY DAUGHTER NATURALLY.
I DID THE WHOLE LAMAZE,
BREATHING, HA-HA-HA, SOME OF YOU
KNOW.
NO DRUGS WHATSOEVER.
I WAS A VEGETARIAN THEN, A
REALLY GOOD MOMMY, A REALLY GOOD
MOTHER.
I LOVED MY KIDS!
BUT YOU KNOW, I DRANK WHEN I WAS
PREGNANT WITH HER!
I HAD NO IDEA NOT TO DRINK.
SO I DID ALL THESE THINGS TO BE
A REALLY DECENT MOTHER, AND YET
I DID THE VERY WORST THING YOU
CAN DO.
AND THAT WAS TO DRINK.
I DIDN'T DRINK EVERY DAY.
BUT I DRANK, YOU KNOW, LIKE WE
DRANK IN MY FAMILY.
YOU KNOW.
DRANK ON THE WEEKENDS, I DIDN'T
DRINK, YOU PROBABLY WOULDN'T
HAVE SAID, OH, SHE'S AN
ALCOHOLIC, YOU MIGHT HAVE, BUT
YOU MIGHT NOT HAVE.
I FUNCTIONED.
AND I HAD BLACKOUTS.
AND A LOT OF PEOPLE DRANK LIKE I
DID.
SO WHEN WE'RE NOT ASKING THE
QUESTIONS OR EDUCATING YOUNG
PEOPLE ABOUT THIS DISORDER, A
LOT OF IT REALLY IS EDUCATION,
FOR THE MAJORITY OF PEOPLE, IF
THEY HAVE THE FACTS THEY WILL
NOT DRINK DURING PREGNANCY.
AND THE PARTNERS WILL SUPPORT.
THEIR SPOUSE, THEIR PARTNERS,
LOVED ONES, NOT TO DRINK.
PEOPLE UNDERSTAND THE SCIENCE
ONCE THEY LEARN.
YOU KNOW, FOR ME, I DO HAVE THE
DISEASE OF ADDICTION.
I HAD -- I BELIEVE I HAD AN
ALCOHOL USE DISORDER, AND DRUGS
WERE VERY PART OF THE
ENVIRONMENT.
I WAS A WOODSTOCK KID, DRUGS
EVERYWHERE, AT MY HIGH SCHOOL.
VERY COMMON FOR PEOPLE TO BE
USING AMPHETAMINES AND SMOKING
WEED AND TAKING BARBITURATES AND
ALL THESE SORTS OF THINGS.
SO I HAD ALL THESE POLY
SUBSTANCE ADDICTIONS GOING ON.
AND I THINK THAT ONE OF THE
THINGS THAT WE UNDERSTAND, WE
WANT TO BE SENSITIVE TO THE FACT
THAT NOT EVERYBODY THAT HAS AN
EXPERIENCE OF USE DURING
PREGNANCY HAS AN ALCOHOL OR
SUBSTANCE USE DISORDER.
THIS IS TRUE.
BUT I WILL TELL YOU THE MAJORITY
OF WOMEN THAT HAVE CHILDREN WITH
A DIAGNOSIS, WITH EFFECTS WHERE
WE UNDERSTAND THIS HAPPENED DUE
TO ALCOHOL, DO HAVE AN ALCOHOL
OR SUBSTANCE USE DISORDER, AND
UNDERSTAND THAT THIS IS A
PROGRESSIVE DISEASE.
SO, NOT EVERYBODY WILL BE
VISIBLE TO THE REST OF THE
WORLD.
YOU MAY NOT THINK OF THIS
PERSON, YOU KNOW, LIKE THE OLD
POSTERS, WHO IS AN ALCOHOLIC,
NOT EVERYBODY IS DOWN AND OUT
LIVING ON THE STREETS.
PEOPLE HAVE BIG JOBS, BIG
DEGREES, THEY GO TO WORK, THEY
RUN BIG COMPANIES.
YOU KNOW, THEY -- BUT THEY STILL
ARE DEALING WITH AN ALCOHOL USE
DISORDER.
OKAY?
SO, AGAIN WE'VE GOT PROVIDERS
THAT ARE AFRAID TO ASK.
THEY DON'T KNOW HOW TO ASK.
THEY DON'T KNOW WHAT TO DO WITH
HER IF THEY DO ASK.
SO, YOU KNOW, IF THERE'S NO
SOLUTION, NO PROBLEM, I'M NOT
GOING TO BRING IT UP BECAUSE I
REALLY DON'T KNOW, IF SHE TELLS
ME, NO, NO, NO, PLEASE DON'T
TELL ME YOU NEED HELP BECAUSE I
DON'T KNOW WHERE TO SEND YOU.
THAT'S ANOTHER BIG PROBLEM.
WHY NOT?
TREATMENT IS EVERY WHERE.
TREATMENT IS AVAILABLE.
BUT THIS IDEA, THIS KIND OF THE
WAY PEOPLE CLOSE IT OFF, WELL,
THERE'S REALLY NO HELP FOR
PREGNANT WOMEN.
THAT'S NOT TRUE!
GO TO THE SAMHSA, YOU KNOW,
WEBSITE.
THAT IS NOT TRUE.
OR CALL ME.
I'LL FIND TREATMENT FOR THEM.
BECAUSE I WILL.
AND WOMEN ARE SCARED TO DEATH TO
TELL ABOUT USE BECAUSE THEY
DON'T KNOW WHAT YOU'RE GOING TO
DO WITH THAT INFORMATION.
WE HAVE THIS NOW, WHICH HAS
GOTTEN REALLY CRAZY, WE WON'T
TALK ABOUT, THAT PEOPLE ARE
SCARED TO DEATH TO TALK ABOUT
USE DURING PREGNANCY.
DOES THAT MEAN YOU'RE GOING TO
TRY TO TAKE MY BABY?
OR TAKE MY THREE KIDS THAT I
HAVE AT HOME?
I'M GOING TO ZIP IT UP AND NOT
TALK.
WE HAVE THIS DYNAMIC WHERE WE
DON'T TALK.
I WENT ALONG, I HAD THREE KIDS,
NO IDEA THAT MY -- THE GIRL IN
THE YELLOW SHIRT HAS FETAL
ALCOHOL SYNDROME.
AND MY OTHER TWO CHILDREN WERE
BOTH EXPOSED BUT DO NOT HAVE A
DIAGNOSIS OF FASDs BUT THAT
DOESN'T MEAN THEY WEREN'T
IMPACTED.
AND I'M SURE THEY WERE, IN MANY
WAYS.
BUT THIS IS MY BEAUTIFUL
DAUGHTER KARLI.
YOU JUST HEARD DR. JONES GIVE
YOU AN OVERVIEW OF THE FACIAL
FEATURES, AND THAT'S A GREAT
PICTURE RIGHT THERE THAT SHOWS
THE FACIAL FEATURES OF FETAL
ALCOHOL SYNDROME.
WHAT WE DID IN OUR FAMILY WAS --
WELL, WHO DOES SHE LOOK LIKE?
SHE LOOKS DIFFERENT, LIKE
GRANDMA DELVECCHIO, THE THIN
LIP.
I FOUND OUT YEARS LATER GRANDMA
DELVECCHIO GREW UP ON TOP OF A
BAR.
SO AGAIN, WHO KNOWS?
BUT MY DAUGHTER WAS NOT
DIAGNOSED UNTIL I READ ABOUT
YOUR PAPER, BECAUSE I HEARD
PEOPLE TALKING ABOUT THIS WAS
DURING THE CRACK EPIDEMIC,
TALKING ABOUT CRACK BABIES, HATE
THOSE TERMS, A TERM USED, I
THOUGHT, WELL, I DIDN'T USE
CRACK BUT I DRANK WINE BUT WHAT
THEY ARE DESCRIBING SEEMS TO BE
WHAT MY DAUGHTER HAS.
I WENT TO THE LIBRARY AND
STARTED LOOKING UP WHAT CAN
ALCOHOL DO.
I READ ABOUT IT.
THAT'S HOW KARLI CAME TO BE
DIAGNOSED.
I BROUGHT HER TO GEORGETOWN
HOSPITAL.
AND UNIVERSITY HOSPITAL.
SHE WOULD HAVE NEVER BEEN
DIAGNOSED HAD I NOT FIGURED IT
OUT.
THAT STILL GOES ON.
SO, ONE OF THE THINGS I DID IN
MY ROLE WHEN I WAS AT NOFAS, A
LOT OF MEDIA, A STORY FOR THE
"WASHINGTON POST."
IT WAS READ BY OVER 8 MILLION
PEOPLE ON DAY 3.
IT GOT A LOT OF ATTENTION.
THAT'S WHAT REALLY SPARKED THE
MONEY THAT WENT INTO STIGMA
BECAUSE IT REALLY BROUGHT TO THE
FOREFRONT HOW PEOPLE REALLY
THOUGHT ABOUT THIS.
AND THE TWO BIG COMMENTS FELL
INTO TWO CATEGORIES.
SHE'S A LIAR.
SHE USED A LOT MORE AND USED
DRUGS AND SHE'S DOWN AND OUT,
SHE'S A TERRIBLE PERSON, AND
SHOULD BE INCARCERATED.
AND THERE'S NO SUCH THING AS
FETAL ALCOHOL SYNDROME.
THAT ONLY HAPPENS TO DOWN AND
OUT PEOPLE THAT ALSO USE DRUGS.
I MEAN, I'M PUTTING THEM INTO
THE EXTREME CATEGORIES BUT THERE
WAS A LOT OF THAT.
SO PEOPLE, THE GENERAL PUBLIC,
STILL DON'T UNDERSTAND ABOUT
SUBSTANCE USE DISORDERS, ALCOHOL
USE DISORDERS, OR FASDs.
GUYS, WE NEED TO GET THE MESSAGE
OUT THERE.
WE NEED TO DO A BETTER JOB.
AND WOMEN THAT USE ALCOHOL OFTEN
ARE USING OTHER DRUGS, SO WHEN
YOU HAVE A WOMAN, MY PRIMARY USE
WAS I WAS A HEROIN ADDICT,
NOBODY EVER ASKED ME ABOUT MY
ALCOHOL USE.
I THINK THAT WHAT WE DO, WE PUT
PEOPLE INTO CATEGORIES, WE DON'T
UNDERSTAND THAT WOMEN THAT ARE
USING DRUGS OR USING ALCOHOL,
WOMEN USING ALCOHOL MAY BE USING
OTHER SUBSTANCES.
THEY DO GO HAND IN HAND.
NOW WE'VE GOT A PROBLEM WITH
MARIJUANA BECAUSE MARIJUANA IS
BEING LEGALIZED, IN A LOT OF
PLACES, AND THE PROBLEM WITH
THAT IS PEOPLE ARE MINIMIZING
THEIR USE, AND IT'S A VERY
COMMON THING AND WE KNOW THROUGH
RESEARCH THAT ALCOHOL COUPLED
WITH MARIJUANA IS PUTTING THEM
AT HIGHER RISK FOR MORE SEVERE
EFFECTS.
SO THAT'S WHY I THINK WE'RE
GOING TO SEE MORE AND MORE OF
THIS THAN WE SEE.
I WANT TO END THIS TALK QUICKLY,
TO GET US BACK ON TRACK, SO I
THINK THAT ONE OF THE THINGS I
SEE IS WE'RE NOT ASKING THE
QUESTIONS.
I RUN A GROUP WEEKLY, I'M GOING
TO TELL YOU ABOUT THAT AT THE
END ONLINE, I STILL TALK TO A
LOT OF WOMEN I THAT ONE WOMAN
FROM MICHIGAN TELL ME, SHE HAD
GONE TO A NEW PHYSICIAN, WAS IN
THE SERVICE, WENT TO A NEW
PHYSICIAN, HAD BEEN DRINKING,
HER HUSBAND WAS DEPLOYED.
SHE WAS DRINKING, AND SHE SAID
THE NEW DOCTOR DIDN'T ASK HER,
JUST SAID LIKE YOU DON'T DRINK
OR USE DRUGS OR ANYTHING LIKE
THAT, SHE SAID, RIGHT, RIGHT,
NEVER ASKED HER AGAIN.
SHE WAS SECRETLY DRINKING.
SHE HAD JUST HAD HER 4-YEAR-OLD
DIAGNOSED.
SO WE NEED TO ASK WOMEN OVER AND
OVER AGAIN AT EVERY APPOINTMENT,
CERTAINLY WHEN THEY ARE
PREGNANT.
WE NEED TO BE ASKING THE
QUESTIONS, TREATMENT CENTERS,
ADDICTION TREATMENT CENTERS,
STILL ARE NOT EVEN THINKING
ABOUT FASDs.
I SEE CHILDREN'S FACES ON ZOOM,
ON MY CALLS.
I CAN TELL YOU I'M NOT A
PHYSICIAN BUT I CAN TELL YOU
THAT'S A CHILD WITH FETAL
ALCOHOL SYNDROME.
THEY HAVE NO IDEA.
WE HAVE WOMEN FROM CHILD WELFARE
COMING ON.
THEY ARE HEARING FROM PEOPLE
LIKE MY DEAR FRIEND STEPHANIE.
AND MYSELF.
IT'S UNBELIEVABLE.
ALL TREATMENT CENTERS THAT COME
ON MY CALLS ALL RECEIVED
GOVERNMENT FUNDING.
WHY AREN'T THEY HEARING ABOUT
IT?
WHY AREN'T THERE MEASURED
OUTCOMES.
WHY ISN'T THERE A MEASURED WAY
THEY ARE BEING TAUGHT ABOUT
FETAL ALCOHOL SPECTRUM
DISORDERS.
SAME WITH I THINK EVERY SINGLE
GOVERNMENT AGENCY OUGHT TO BE
WEAVING THIS IN.
THERE'S NO QUICK FIX TO THIS.
MEDICATION-ASSISTED TREATMENT IS
FINE.
IT SHOULDN'T BE, OKAY, SHE'S ON
THAT.
WE SHOULDN'T HAVE PEOPLE ON
MEDICATION FOR THE REST OF THEIR
LIVES.
THAT'S A STEP DOWN THING.
THAT'S A THING AT SOME POINT WE
WANT TO GET THEM OFF OF, I
THINK, FOR THEIR LIFE, FOR THE
QUALITY OF THEIR LIFE, AND WE
HAVE SEEN WOMEN, YOU KNOW,
DEALING WITH THESE.
I CAN'T REALLY GET INTO THIS
BECAUSE I'M FEELING PUSHED TO
END THIS TALK BUT WE CAN DO
MORE, WE NEED TO INCLUDE FASD
INTO EVERY SINGLE THING WE'RE
DOING WHEN WE'RE DEALING WITH
HUMAN SERVICE AGENCIES.
AND WE ALSO NEED TO UNDERSTAND
THAT WOMEN AND THEIR FAMILIES
ARE RESILIENT.
PEOPLE WITH FASDs ARE
RESILIENT.
THEY DO WELL WHEN WE HAVE
ENVIRONMENTS THAT MATCH THEIR
NEEDS.
I PUT THIS MOTHER'S WISH LIST
TOGETHER HERE.
I'VE ADDRESSED SOME.
BUT IN EVERY SYSTEM OF CARE,
WHEN WE'RE DEVELOPING APPS,
BEING FUNDED TO DO WHATEVER IT
IS THAT WE DO, IN OUR WORLD,
PLEASE MAKE SURE THAT FASD IS
WOVEN INTO THAT.
WOMEN CAN AND DO RECOVER.
THEY GET TO BE THE MOTHERS, THEY
GET TO BE THE PARTNERS, YOU
KNOW, THEIR CHILDREN GET TO HAVE
THEIR MOTHERS BACK WHEN WE PAY
ATTENTION TO THE MOMS.
THIS IS THE GROUP I HAD
MENTIONED, RECOVERING MOTHERS
ANONYMOUS, A 12-STEP GROUP, AND
IT'S NOT FOR WOMEN WHO ARE IN
RECOVERY FROM ADDICTION.
IT'S FOR WOMEN IN RECOVERY FROM
HAVING THE LIVED EXPERIENCE OF
USE DURING PREGNANCY.
ALL WOMEN ARE WELCOME TO THAT.
AND WE SUPPORT EACH OTHER.
AND I JUST DID INCLUDE -- WANTED
TO INCLUDE GOOD WORK FASD UNITED
IS DOING.
THEY HAVE GONE IN A GREAT
DIRECTION, FOCUSING ON THE LIVES
OF PEOPLE LIVING WITH FASDs,
WHICH ARE REALLY GREAT BUT LET'S
NOT FORGET ABOUT PREVENTION.
AND THAT WE CAN PREVENT THIS
THING AND WE CAN GET WOMEN THE
HELP THEY NEED AND TREATMENT
THEY NEED.
THANK YOU SO MUCH.
>> THARCHG
THANK YOU FOR YOUR LIVED
EXPERIENCE AND CONSIDERATIONS
FOR ALL OF US.
NEXT SPEAKER IS DR. JANINE
CLAYTON FROM OFFICE OF RESEARCH
ON WOMEN'S HEALTH OF THE SHE'S
THE ASSOCIATE DIRECTOR FOR
RESEARCH ON WOMEN'S HEALTH AND
DIRECTOR OF THE OFFICE OF
RESEARCH ON WOMEN'S HEALTH AT
THE NATIONAL INSTITUTES OF
HEALTH.
AND IS THE ARCHITECT OF THE NIH
POLICY REQUIRING SCIENTISTS TO
CONSIDER SEX AS A BIOLOGICAL
VARIABLE ACROSS THE RESEARCH
SPECTRUM.
THIS POLICY IS PART OF NIH'S
INITIATIVE TO ENHANCE
REPRODUCIBILITY THROUGH RIGOR
AND TRANSPARENCY.
AS CO-CHAIR OF THE WORKING GROUP
ON WOMEN IN BIOMEDICAL CAREERS,
DR. CLAYTON LEADS NIH EFFORTS TO
ADVANCE WOMEN IN SCIENCE
CAREERS.
IN 2021 SHE WAS ELECTED TO BOARD
OF DIRECTORS OF AMERICAN
ASSOCIATION FOR ADVANCEMENT OF
SCIENCE.
PRIOR TO JOINING ORWH SHE WAS
DEPUTY CLINICAL DIRECTOR OF
NATIONAL EYE INSTITUTE FOR SEVEN
YEARS, BOARD CERTIFIED
OPHTHALMOLOGIST, RESEARCH
INTERESTS INCLUDE AUTOIMMUNE
OCULAR DISEASES, AND ROLE OF SEX
AND GENDER IN HEALTH AND
DISEASE.
SHE'S AUTHOR OF MORE THAN 120
SIGN SCIENTIFIC PUBLICATIONS,
JOURNAL ARTICLES, BOOK CHAPTERS,
DEGREES FROM JOHNS HOPKINS AND
MEDICAL DEGREE FROM HOWARD
COLLEGE UNIVERSITY OF MEDICINE,
RESIDENCY IN OPHTHALMOLOGY
MEDICAL COLLEGE OF VIRGINIA,
FELLOWSHIP TRAINING IN CORNEA
AND EXTERNAL DISEASE AT THE
WILMER EYE INSTITUTE AT JOHNS
HOPKINS HOSPITAL, AND NATIONAL
EYE INSTITUTES.
IN ADDITION TO HER AWARDS IN
OPHTHALMOLOGY SHE IN 2015 WAS
AWARDED AMERICAN MEDICAL WOMEN'S
ASSOCIATION WALLACE WOMEN'S
HEALTH AWARD, AND WINGER AWARD
FOR EXCELLENCE IN PUBLIC
SERVICE.
SHE WAS GRANTED BERNADINE HEALEY
AWARD IN 2016, HONOR REFOR
WOMEN'S DAY RED DRESS AWARDS,
AMERICAN MEDICAL ASSOCIATION DR.
NATHAN DAVIS AWARDS FOR
OUTSTANDING GOVERNMENT SERVICE
IN 2017.
A VERY PRESTIGIOUS AWARD.
IN 2023 RECEIVED AMERICAN
MEDICAL WOMEN'S ASSOCIATION
PRESIDENTIAL AWARD.
JANINE, WE APPRECIATE YOU TAKING
THE TIME TO JOIN US TO LISTEN TO
SOME PREVIOUS PRESENTATIONS AND
TO SHARE YOUR INFORMATION BOTH
FROM THE OFFICE OF RESEARCH ON
WOMEN'S HEALTH AND FIRST LADY'S
INITIATIVE ON WOMEN'S HEALTH.
>> THANK YOU, DR. POWELL, FOR
THAT INCREDIBLE GRACIOUS
INTRODUCTION AND MY APOLOGIES
FOR NOT BEING THERE IN PERSON.
I HAVE REALLY LEARNED A LOT FROM
THE PRESENTATIONS THAT HAVE
ALREADY OCCURRED AND WANT TO
THANK DR. LIONS AND MS. MITCHELL
FOR THEIR PERSPECTIVES AND I
WANT TO ACKNOWLEDGE THEM ALSO,
DR. BALACHOVA, AS THE EXEC SEC
OF THIS GROUP.
ARE YOU GOING TO SHARE MY
SLIDES, TRISH?
DO YOU HAVE THOSE TEED UP TO
PRESENT OR DO YOU NEED ME TO DO
THAT?
>> OKAY, SLIDES UP.
DO WE WANT TO -- WE CAN IF YOU
WANT.
WE CAN MOVE YOUR SLIDES BUT IF
YOU WISH --
>> YEAH, THAT WOULD BE GREAT.
>> YOU WANT US?
>> YES, THANK YOU SO MUCH.
AT THAT TIMIAN -- TATIANA, THEY
ARE SHOWING NOW.
YOU'RE SEEING THEM, RIGHT?
>> WE CAN SEE THEM.
>> THANK YOU SO MUCH.
NEXT SLIDE PLEASE.
I'M GOING TO TALK ABOUT THE
OFFICE OF RESEARCH ON WOMEN'S
HEALTH AND NEW WHITE HOUSE
INITIATIVE ON WOMEN'S HEALTH
RESEARCH.
NEXT.
CLICK AGAIN FOR ME.
I WANT TO HIGHLIGHT THIS DATA
FROM BEFORE THE PANDEMIC,
2003-2018, WHAT WE'RE LOOKING AT
HERE IS ALCOHOL-INVOLVED SUICIDE
RATES INCREASED FOR ALL WOMEN
OVER 18 AND FOR MEN BETWEEN 35-
64 PRIOR TO THE PANDEMIC.
THIS DATA IS REGARDING WHAT
HAPPENED TO AVERAGE NUMBER OF
DRINKS OF ALCOHOL PER DAY, PER
MONTH, OVER THE PERIOD OF THE
PANDEMIC.
FOR THE DARK LINE WE SEE THE
NUMBER OF AVERAGE DRINKS GOING
DOWN FOR MALES, WE SEE A SLIGHT
INCREASE FOR FEMALES.
NEXT.
THIS IS CDC DATA AROUND DEATHS
RELATED TO EXCESSIVE ALCOHOL
USE.
SO I'VE TALKED ABOUT
ALCOHOL-INVOLVED SUICIDE BEFORE
THE PANDEMIC.
HOW MUCH ALCOHOL IS BEING
CONSUMED DURING THE PANDEMIC.
AND NOW LOOKING ACROSS
ENCOMPASSING PART OF THE
PANDEMIC WE SEE A 34.7% INCREASE
IN DEATHS RELATED TO EXCESSIVE
ALCOHOL FOR FEMALES AND 27%
INCREASE FOR MALES.
I AS A SCIENTIST AND PHYSICIAN,
I ALWAYS WANT TO START WITH THE
DATA, BUT I ALSO APPRECIATE THAT
THERE ARE PEOPLE AND FAMILIES
AND STORIES BEHIND THIS DATA.
NEXT.
AND REGARDING THAT WE'VE HEARD
ALREADY THAT THERE ARE CONCERNS
WOMEN HAVE ABOUT ACCESSING CARE.
I HAVE QUOTES FROM DR. ROACH, AN
NIAAA COLLEAGUE WHO WE WORKED
WITH FOR MANY YEARS, WE KNOW
COMPARED TO MEN WOMEN ARE LESS
LIKELY TO BE OBTAIN TREATMENT,
MORE LIKELY TO HAVE ADDITIONAL
COMORBID CONDITIONS, MORE LIKELY
TO REMAIN IN TREATMENT FOR
SHORTER DURATIONS, THAT THESE
DISPARITIES DIFFER FOR
POPULATIONS AND STARKER FOR
BLACK AMERICANS, AMERICAN INDIAN
ALASKA NATIVE AND LATINA WOMEN.
BY SOME ESTIMATES BLACK AND
LATINA WOMEN HAVE APPROXIMATELY
ONE-QUARTER THE ODDS OF
OBTAINING ALCOHOL TREATMENT
SERVICES.
SO WE DO HAVE WORK TO DO AS
KATHY MITCHELL HIGHLIGHTED.
NEXT SLIDE.
IN ADDITION, THERE ARE SPECIFIC
CONCERNS THAT WOMEN HAVE, THAT
ARE DIFFERENT THAN OTHERS.
AND THAT IS AROUND STIGMA.
FOR BLACK, INDIGENOUS, PEOPLE OF
COLOR, THE CONCERNS ABOUT
EXPERIENCING DISCRIMINATION IN
HEALTH CARE WHICH HAVE BEEN
VALIDATED WITH DATA AND STIGMA
POSE BARRIERS TO WOMEN SEEKING
CARE.
WOMEN OFTEN AVOID REPORTING
THEIR PROBLEMS WITH SUBSTANCE
USE TO HEALTH CARE PROVIDERS
BECAUSE THEY FEAR BEING LABELED,
AS WE HEARD, AND POORLY TREATED
BY PROVIDERS AND OFTEN FEAR
HAVING CHILDREN TAKEN AWAY FROM
THEM.
THESE ARE SPECIFIC CONCERNS
WOMEN HAVE AND WE NEED TARGETED
INTERVENTIONS THAT ADDRESS THESE
SPECIFIC CONCERNS.
NEXT.
ONE OF THE REASONS THAT WE NEED
THAT IN ADDITION TO PROVIDING
SEX AND GENDER-INFORMED CARE,
CARE TAILORED TO THAT PERSON,
THAT INDIVIDUAL PATIENT, IS
BECAUSE WE HAVE A PROBLEM IN OUR
COUNTRY WITH MATERNAL MORTALITY.
THESE ARE TRENDS IN DEATHS PER
100,000 LIVE BIRTHS, FROM 1990
TO 2020, ALL OF THOSE GRAY LINES
ARE HIGH-INCOME COUNTRIES, SO
RED LINE IS UNITED STATES, OUR
RATES ARE GOING UP IN A VERY
DISTURBING WAY.
AND IF YOU DISAGGREGATE DATA BY
RACE/ETHNICITY, THE HIGHEST
RATES HERE ARE FOR BLACK WOMEN,
AMERICAN INDIAN AND ALASKA
NATIVE WOMEN NOT INCLUDED IN
THIS ANALYSIS, THEIR RATES ARE
EVEN HIGHER.
THERE'S CLEARLY A CHALLENGE
AROUND REPRODUCTIVE AGE WOMEN
AND THEIR HEALTH, THAT IS BEING
TRANSLATED INTO MATERNAL
MORTALITY, THAT IS UNACCEPTABLE
IN THE UNITED STATES.
WHEN WE LOOK AT HOW WOMEN DIE
RELATED TO PREGNANCY, WE SEE
THAT THEY DIE FROM DIFFERENT
CAUSES, BUT BETWEEN DIFFERENT
TIMES OF PREGNANCY, BUT WE ALSO
WANT TO SEE WHEN THEY DIE IN
TERMS OF TIMING.
IS IT DURING THE PREGNANCY, IS
IT DURING THE DELIVERY, AND I'M
HIGHLIGHTING OVER HALF OF THE
DEATHS OCCUR AFTER DELIVERY.
THAT'S NOT WHAT PEOPLE NORMALLY
THINK ABOUT.
IT'S NOT JUST DURING THE
PREGNANCY AND DURING THE
DELIVERY.
THIS IS ONE TO SIX DAYS
POSTPARTUM TO A YEAR POSTPARTUM,
OVER HALF.
WE NEED TO ADDRESS THIS
COMPREHENSIVELY.
IT'S WHY WE DO WHAT WE DO AT
ORWH.
I WANTED TO TELL YOU ABOUT OUR
HISTORY.
JUST A WHIRLWIND HERE, THESE ARE
SOME OF THE MAJOR PROGRAMS AND
EFFORTS WE'VE UNDERTAKEN, AND I
WILL TALK TO YOU, AND GIVE
EXAMPLES ALONG THE WAY.
WE WERE FOUNDED BECAUSE WOMEN
WERE NOT BEING INCLUDED
ROUTINELY IN NIH-SUPPORTED
CLINICAL RESEARCH, IN 1990, THE
FINDINGS FROM STUDIES WERE BEING
APPLIED TO WOMEN.
WE DIDN'T KNOW AT THAT TIME THAT
WOMEN AND MEN DIFFER IN MANY
WAYS BEYOND REPRODUCTIVE ORGANS.
NEXT SLIDE PLEASE.
SO TODAY OVER HALF OF THE
PARTICIPANTS OF NIH-SUPPORTED
CLINICAL RESEARCH ARE WOMEN.
AND OUR GOAL HERE, OUR MISSION,
IS TO EXPAND WOMEN'S HEALTH
RESEARCH, MAKE SURE THAT
UNDERREPRESENTED GROUPS AND
WOMEN ARE INCLUDED IN THAT
RESEARCH, AND PROMOTE CAREER
ADVANCEMENT OF WOMEN IN SCIENCE,
TECHNOLOGY, ENGINEERING,
MEDICINE, MATHEMATICS.
BECAUSE WE IMAGINE A WORLD WHERE
CONSIDERING WOMEN'S HEALTH
ACROSS A BIOMEDICAL SPECTRUM IS
AS AUTOMATIC AS LOOKING BOTH
WAYS BEFORE YOU CROSS THE
STREET.
WE IMAGINE A WORLD WHERE EVERY
WOMAN RECEIVES EVIDENCE-BASED
TREATMENT, TAILORED TO HER OWN
CIRCUMSTANCES, GOALS, NEEDS, AND
MANUAL -- IMAGINE A WOMEN WHERE
ALL WOMEN REACH FULL POTENTIAL.
INCLUDE
INCLUDE-- I MENTION INCLUSION,
IT'S IN OUR DNA, THAT'S WHY WE
WERE FOUNDED.
WHEN THE 21ST CENTURY CURES ACT
WENT INTO EFFECT LEGISLATING
PEOPLE OF ALL AGES ALSO MUST BE
INCLUDED IN NIH-SUPPORTED
CLINICAL RESEARCH, AND CREATED A
PATH TO INCLUDE PREGNANT AND
LACTATING PEOPLE IN RESEARCH
BECAUSE IF WE DON'T INCLUDE
INDIVIDUALS WHO ARE PREGNANCY
AND LACTATING WE DON'T HAVE
EVIDENCE TO ADVISE THEM WHEN
THEY ARE PREGNANT AND LACTATING
REGARDING SAFETY OR EFFICACY OF
INTERVENTIONS AND MEDICATIONS
THAT THEY NEED TO TAKE.
IT ALSO REQUIRED THAT NIH DEFINE
PHASE 3 CLINICAL TRIALS OF THOSE
BIG STUDIES, REPORT RESULTS BY
SEX AND GENDER RACE AND
ETHNICITY INTO
clinicaltrials.gov.
WE KNOW INSIGHTED GARNERED BY
INCLUDING PEOPLE AFFECTED BY
DISEASES IN STUDIES HELPING US
REHANS REPRODUCIBILITY, OUR
CONFIDENCE IN THESE STUDIES AS
WELL AS GENERALIZABILITY OF
THOSE CLINICAL STUDY FINDINGS TO
EVERYONE AFFECTED BY THE DISEASE
OR UNDERSTAND ANY DIFFERENCES
THAT ARE CLINICALLY IMPORTANT.
NEXT.
SO, WHAT DO WE DO AT NIH?
WE HAVE AN NIH-WIDE STRATEGIC
PLAN.
I'M EXCITED TO SHARE WITH YOU
THE NEW PLAN WILL BE COMING OUT
NEXT WEEK.
CLICK AGAIN.
WE WORK WITH 27 INSTITUTES AND
CENTERS AT NIH INCLUDING NIAAA
AND MANY OFFICES IN PARTNERSHIP.
NEXT.
AND WE WORK THROUGH DRIVING
SYNERGISTIC RESEARCH PRIORITIES
TO ACHIEVE THAT NIH VISION THAT
I JUST MENTIONED TO YOU, THROUGH
WORKING GROUPS, FUNDING
OPPORTUNITIES, WORKSHOPS, PRIOR
SETTING.
NEXT.
AND WE HAVE SIGNATURE RESEARCH
PROGRAMS THAT WE LEAD WITH THE
INSTITUTES AND CENTERS, CAN YOU
SEE FOR EACH THE NUMBER OF
INSTITUTES, CENTERS, AND
OFFICES, ICOS TO PARTNER WITH TO
LEAD THESE COMPLEMENTORY TO
EFFORTS THE I.C.s UNDERTAKE.
OUR BIRCWH PROGRAM IS A CAREER
DEVELOPMENT PROGRAM, PURPOSE OF
WHICH IS TO EXPAND THE CADRE OF
PEOPLE DOING WOMEN'S HEALTH
RESEARCH AROUND THE COUNTRY.
THE SCORE PROGRAM, SEX
DIFFERENCES CENTERS OF
EXCELLENCE.
AND WE HAVE ADMINISTRATIVE
SUPPLEMENTS WHERE WE PROVIDE
ADDITIONAL FUNDING TO
INVESTIGATORS ALREADY FUNDED TO
BE ABLE TO LOOK AT UNDERSTUDIED
POPULATIONS OR TO ADD SEX AND
GENDER.
WE HAVE LED NIH'S ONLY R01
FOCUSED ON INTERSECTION OF SEX
AND GENDER, BIOLOGY AND SOCIAL
FACTORS, ON HEALTH AND DISEASE,
AND HAVE THE NEW R21 AND NEW R01
LOOKING AT CHRONIC CONDITIONS WE
KNOW ARE UNDERSTUDIED AMONG
WOMEN.
NEXT SLIDE PLEASE.
MENTIONED IN THE TIMELINE SEX AS
A BIOLOGICAL VARIABLE POLICY,
AND BASICALLY THAT POLICY WENT
INTO EFFECT IN 2016, AND DR.
COLLINS AND I PUBLISHED A PAPER
IN 2014 LEADING UP TO THAT
POLICY WHERE WE ARTICULATED NIH
EXPECT IT'S SEX AS A BIOLOGICAL
VARIABLE WILL BE FACTORED INTO
RESEARCH DESIGNS, ANALYSIS AND
REPORTING, FOR VERTEBRATE ANIMAL
AND HUMAN STUDIES AND STRONG
JUSTIFICATION FROM THE
SCIENTIFIC LITERATURE OR
RELEVANT CONSIDERATION BE
PROVIDED FOR SINGLE SEX STUDIES,
THIS IS BECAUSE MANY STUDIES
PRE-CLINICAL AND CLINICAL WERE
INCLUDING JUST MEN OR MALE
ANIMALS, AND SO THIS WAS
NECESSARY TO MOVE FORWARD.
NEXT.
WE HAVE SEEN, CLICK AGAIN, AND
AGAIN, OVER MANY YEARS -- ON YOU
LEFT YOU SEE WOMEN'S HEALTH
INITIATIVE, A LANDMARK STUDY
LOOKING AT WOMEN OLDER AGE WOMEN
THAT DR. BERNADINE HEALY LED AND
CREATED WHEN NIH DIRECTOR, STUDY
OF WOMEN ACROSS THE NATION,
DIVERSE POPULATIONS THAT THE
AGING INSTITUTE LEADS, HPV
VACCINE WHICH CAN LITERALLY
PREVENT CERVICAL CANCER,
INSTITUTION OF MENTAL HEALTH
RESEARCH LEADING TO THE
TREATMENT FOR POSTPARTUM
DEPRESSION AND LEADING TO THE
IDENTIFICATION OF JAK INHIBITORS
TO TREAT THESE DISEASES, PLAYING
A CRITICAL ROLE.
I MENTIONED MATERNAL MORTALITY
CRISIS WE'RE FACING IN THIS
COUNTRY.
AND WE BROUGHT THAT TO THEN NIH
DIRECTOR FRANCIS COLLINS'
ATTENTION, HE CREATED AND NIH
WIDE MATERNAL MORTALITY TASK
FORCE.
I HAVE THE PRIVILEGE TO CO-CHAIR
WITH NICHD DIRECTOR, AND NURSING
INSTITUTE DIRECTOR, AND WITH
CONGRESSIONAL APPROPRIATIONS
CREATED THE IMPLEMENTING
MATERNAL HEALTH AND PREGNANCY
OUTCOMES VISION FOR EVERYONE,
IMPROVE INITIATIVE.
THIS MULTI-COMPONENT INITIATIVE
INCLUDES DISSEMINATION AND
IMPLEMENTATION SCIENCE,
COMMUNITY ENGAGEMENT, TECH
CHALLENGES, AND IN THE CENTER,
THE CENTERPIECE, MATERNAL HEALTH
RESEARCH CENTERS OF EXCELLENCE
THROUGHOUT THE COUNTRY LOOK TOCK
ADDRESS BIOPSYCHOSOCIAL
CONSOLATION OF FACTORINGS TO
IMPROVE HEALTH OF WOMEN AND
ADDRESS MATERNAL MORBIDITY AND
MORTALITY CRISIS IN THIS
COUNTRY.
NEXT.
IN ADDITION, WE CREATED MATERNAL
MORBIDITY AND MORTALITY WEB
PORTAL SO INFORMATION IS IN A
SINGLE PLACE, PEOPLE COULD FIND
THAT INFORMATION AT NIH ON OUR
WEBSITE AND THEN IN OUR
UNDERSTUDIED UNDERREPRESENTED
AND UNDERREPORTED WOMEN
POPULATIONS PROGRAM INCLUDED
MATERNAL MORBIDITY AND MORTALITY
AS KEY PRIORITY, ONE EXAMPLE OF
A STUDY THAT'S LOOKING AT
OPIOIDS AND MATERNAL BRAIN
BEHAVIOR, EXAMINING ASSOCIATIONS
BETWEEN CHILDHOOD TRAUMA AND
VIOLENCE AND OPIOID USE
DISORDER, AND BRAIN CIRCUITRY
AND MECHANISMS AROUND PARENTING
BEHAVIORS, AND INFANT OUTCOMES.
SO JUST AN EXAMPLE OF WHEN YOU
FOCUS YOUR ATTENTION ON AN
ISSUE, AS WE DO, WE CAN ELEVATE
RESEARCH AND EXPAND RESEARCH IN
THOSE AREAS WHICH IS WHAT WE DO
IN COLLABORATION WITH THE
INSTITUTES AND CENTERS HERE AT
NIH.
NEXT.
WE ALSO HAVE A VARIETY OF
CAREERS PROGRAM SO I WANTED TO
JUST BRIEFLY MENTION SOME OF
THEM.
OUR REENTRY REINTEGRATION AND
RETRAINING SUPPLEMENTS WERE
EXPANDED TO INCLUDE IF A PERSON
IS EXPERIENCING UNSAFE WORK
ENVIRONMENT INCLUDING SEXUAL
HARASSMENT CAN GET ONE OF THESE
SUPPLEMENTS TO MOVE TO A SAFE
ENVIRONMENT.
AND I ALSO WANT TO HIGHLIGHT OUR
TWIN PROGRAM, AT HARVARD, WHICH
IS AN INNOVATION PROGRAM BETWEEN
OUR SCORE AND BIRCWH, WE'RE
SUPPORTING CURRICULUM
DEVELOPMENT FOR ENTREPRENEURSHIP
FOR THOSE SCHOLARS BECAUSE WE
NEED TO MOVE ACROSS SECTORS AND
NOT JUST WORK IN ACADEMIA BUT
ALSO IN THE PRIVATE SECTOR AS
WELL.
NEXT.
I AM ALSO REALLY PRIVILEGED TO
CO-CHAIR THE COMPASS PROGRAM, A
COMMON FUND EFFORT AT NIH,
DESIGNED TO CATALYZE THE
QUESTION EQUITY, STRUCTURAL
INTERVENTION AND DEVELOP A NEW
HEALTH EQUITY RESEARCH PANEL.
THIS IS CALLED -- THE DELTA
HEALTH ALLIANCE, A COMMUNITY
ORGANIZATION THAT'S BEING
DIRECTLY FUNDED BY NIH TO
RESEARCH WAYS TO ADDRESS
MISSISSIPPI'S BIRTH AND MATERNAL
HEALTH DISPARITIES.
WE PROVIDE INFORMATION FOR
PRE-PREGNANCY HEALTH
OPTIMIZATION, POSTPARTUM HEALTH
IMPROVEMENT IN RURAL AND LOW
INCOME AREAS, TRAINING FOR
PROVIDERS, AND ADDRESS THE
ECONOMIC STABILITY THAT IS
ACCOMPANYING THESE PROBLEMS BY
IMPLEMENTING MATERNAL LEAVE
STIPEND.
HERE ARE SOME CREATIVE WAYS NIH
IS WORKING TO ADDRESS THESE
CHALLENGING ISSUES.
NEXT SLIDE.
CLICK A FEW TIMES FOR ME HERE.
ONE MORE TIME.
AND ONCE MORE.
THANK YOU.
SO, GO BACK ONE SLIDE FOR ME.
I WANT TO HIGHLIGHT FOR YOU THAT
WE TAKE A LIFE COURSE
PERSPECTIVE.
THAT THE HEALTH OF WOMEN IS
DETERMINED BY WHAT'S HAPPENED TO
THEM IN THEIR CHILDHOOD, WHETHER
THEY HAD ADVERSE CHILDHOOD
EXPERIENCES, WE NEED TO TAKE
THAT AS A CONTINUUM.
IN FACT WE KNOW HEALTH OF A
WOMAN IS AFFECTED BY HEALTH OF
HER MOTHER WHEN SHE WAS PREGNANT
WITH HER.
AND WE KNOW WHAT HAPPENS WHEN A
WOMAN IS PREGNANT AS WE'RE
TALKING ABOUT TODAY CAN HAVE
EFFECTS FOR GENERATIONS MOVING
FORWARD.
IT'S IMPORTANT TO TAKE THAT LIFE
COURSE PERSPECTIVE.
NEXT.
AND OUR NEW STRATEGIC PLAN WE
OUTLINE THAT LIFE COURSE PER
SPECK ACTIVE AND -- PERSPECTIVE
TO CONSIDER BIOLOGICAL FACTORS
LIKE GENES, HORMONES, THE IMMUNE
SYSTEM, BUT ALSO SOCIAL AND
ENVIRONMENTAL FACTORS AND
EXPOSURES AND CONTEXT.
WHETHER THAT'S A TOXIC EXPOSURE
TO CHEMICAL OR TOXIC EXPOSURE TO
A TOXIC RELATIONSHIP, WHETHER
THAT IS ECONOMIC STABILITY AND
AVAILABILITY OF FRESH FRUIT AND
VEGETABLES OR SPACE ENVIRONMENTS
AND PLACES AND SPACES TO
EXERCISE OR WALK, ALL OF THESE
FACTORS AFFECT OUR HEALTH.
AND WITHOUT CONSIDERING THIS
COMPLEX CONSTELLATION OF
FACTORS, WE'RE ADDRESSING THESE
IN A PIECEMEAL FASHION AND WORK
ACROSS ALL INSTITUTES TO PUT
THAT INFORMATION TOGETHER,
LEVERAGE THAT INCREDIBLE CUTTING
EDGE SCIENCE, INTEGRATE IT, USE
CUTTING EDGE ANALYTIC APPROACHES
SO WE CAN DERIVE INSIGHTS AND
SEE PATTERNS AND MOVE FORWARD IN
ADDRESSING THOSE PATTERNS WITH
SPECIFIC INTERVENTIONS FOR
WOMEN.
NEXT SLIDE.
SO, AS I GO INTO THIS NEXT
SECTION, I'M HONORED TO HAVE
BEEN ABLE TO BE WITH DR.
BERTAGNOLLI AND OTHERS IN THE
OVAL OFFICE TO SEE THE PRESIDENT
SIGN THE FIRST EVER WHITE HOUSE
INITIATIVE ON WOMEN'S HEALTH
RESEARCH.
THIS EFFORT IS BEING CO-LED FROM
THE WHITE HOUSE ALONG WITH
OFFICE OF THE FIRST LADY THAT
YOU SEE STANDING THERE, AND THEY
HAVE AN INCREDIBLE DEDICATION
AND COMMITMENT TO THIS ISSUE,
AND WOMEN IN THIS COUNTRY.
NEXT SLIDE PLEASE.
FOLLOWING THAT IN NOVEMBER IN
MARCH THE PRESIDENT TOOK THE
NEXT STEP AND SIGNED EXECUTIVE
ORDER 14120, PRIORITIZING
INVESTMENT IN WOMEN'S HEALTH
RESEARCH ACROSS THE FEDERAL
RESEARCH PORTFOLIO, NOT JUST
NIH, MULTIPLE DEPARTMENTS AND
AGENCIES GALVANIZING RESEARCH ON
MID-LIFE HEALTH CHALLENGING TO
US ASSESS THE UNMET NEEDS TO
SUPPORT WOMEN'S HEALTH RESEARCH.
NEXT.
AND SO HERE ARE THE FOUR MAJOR
AREAS THAT I MENTIONED.
WE ARE WORKING ACROSS VARIOUS
DEPARTMENTS AND AGENCIES TO SEE
WHAT THOSE RESEARCH GAPS ARE, TO
IDENTIFY WHERE WE NEED TO
PRIORITIZE WOMEN'S HEALTH
RESEARCH TO TALK ABOUT WAYS TO
INTEGRATE INNOVATION TO MAKE
SURE DATA STANDARDS SUPPORT
UNDERSTANDING EFFECTS OF
RESEARCH FOR WOMEN AND HAVING
THAT INFORMATION DISAGGREGATED
SO RESULTS ARE PUBLISHED FOR
FEMALES AND MALES, WOMEN AND
MEN, SO WE CAN UNDERSTAND WHERE
THERE ARE CLINICALLY IMPORTANT
DIFFERENCES IN EFFECTIVENESS AND
PERHAPS IN SAFETY OF
INTERVENTIONS.
NEXT SLIDE PLEASE.
THESE ARE THE AGENCIES AND
DEPARTMENTS THAT WE'RE WORKING
ACROSS, 11 FEDERAL AGENCIES FOR
THE MULTI-YEAR AGENCY
CROSS-CUTTING PROGRAM TOWARDS
TRANSFORMING AND DEVELOPING
WOMEN'S HEALTH.
AND THE PRESIDENT IN HIS STATE
OF THE UNION ADDRESS REQUESTED
$12 BILLION, NOT IN FYI FUNDING
BUT GOING FORWARD.
THIS CENTRAL FUND WOULD SUPPORT
INTERDISCIPLINARY RESEARCH,
EXPAND OUR NETWORK OF RESEARCH
CENTERS OF EXCELLENCE AND
INNOVATION, SERVE AS NATIONAL
GOLD STANDARD, IT WOULD GO
BEYOND WHAT A SINGLE INSTITUTE
COULD DO AT NIH BUT INSTEAD
BRING TOGETHER THE WORK EFFORTS,
ADVANCES FROM ALL OF THE
INSTITUTES AND ADDRESS WOMEN'S
HEALTH CHALLENGES IN NEW AND
INTERDISCIPLINARY WAYS.
NEXT SLIDE PLEASE.
SOME STEPS WE'VE TAKEN TO GET
THIS OFF THE GROUND IS WE
DEVELOPED THE FIRST EVER
NIH-WIDE NOTICE OF SPECIAL
INTEREST LINKING TO EVERY SINGLE
NIH PARENT FUNDING OPPORTUNITY,
EXPRESSING OUR WILLINGNESS TO
RECEIVE APPLICATIONS ACROSS A
WIDE RANGE OF MECHANISMS AND
WIDE RANGE OF TOPICS, AND IN
VARIOUS FORMS ON FUNDING
MECHANISMS.
WE LAUNCHED A NEW EFFORT AROUND
COMMON DATA ELEMENTS, SPECIFIC
TO WOMEN, LOOKING AT ISSUES LIKE
HOW DO WE CHARACTERIZE MEN PAUSE
TO COME BIB DATASETS, COMMON
DATA ELEMENTS TO MAKE THOSE
DATASETS WORK HARDER PROMOTING
INTEROPERABILITY.
WE'RE GOING TO PRIORITIZE
RESEARCH IN SMALL BUSINESS
INNOVATION RESEARCH PROGRAM AND
SMALL BUSINESS TECH TRANSFER
PROGRAM AND WITH A GOAL OF
INCREASING OUR INVESTMENT BY 50%
IN THOSE FOCUSED ON RESEARCH AND
INNOVATION RELEVANT TO HEALTH OF
WOMEN.
WE LAUNCHED FIRST EVER PATHWAYS
TO PREVENTION SERIES ON
MENOPAUSE AND MANAGEMENT OF
MENOPAUSE-RELATED ISSUES AND
SYMPTOMS.
AND NICHD LED THE WAY IN
LAUNCHING A NEW INITIATIVE
DEDICATED TO RESEARCH ON
BIOMARKER DISCOVERY AND
VALIDATION TO HELP IMPROVE OUR
ABILITY TO PREVENT, DIAGNOSE,
TREAT CONDITIONS THAT AFFECT
WOMEN UNIQUELY WITH THEIR
EFFORT, THEY ARE TARGETING
ENDOMETRIOSIS.
NEXT SLIDE PLEASE.
THIS IS A LITTLE BIT OF MORE
DETAIL JUST ON THOSE ITEMS FOR
COMPLETION.
BUT I CAN GO TO THE NEXT SLIDE
TO MAKE SURE WE HAVE TIME FOR
QUESTIONS.
HERE IS DETAIL ON THE NOTICE OF
SPECIAL INTEREST THAT'S NIH-WIDE
ON WOMEN'S HEALTH RESEARCH,
FIRST RECEIPT DATE THIS WEEK,
I'M SO EXCITED TO SEE WHAT COMES
IN.
WE'RE ADDRESSING CONDITIONS THAT
AFFECT JUST WOMEN, LIKE
FIBROIDS, OR MENOPAUSE, DISEASES
THAT PRESENT AND PROGRESS
DIFFERENTLY IN WOMEN, LIKE HEART
DISEASE, OR HIV, AND DISEASES
THAT PREDOMINANTLY AFFECT WOMEN
LIKE AUTOIMMUNE DISEASES, 80%,
OR ALZHEIMER'S DISEASE,
TWO-THIRDS ARE WOMEN, TWO-THIRDS
OF CAREGIVERS ARE WOMEN.
NEXT.
BIOMARKER EFFORT AND DATA TO
SUPPORT RE RESEARCH ON WOMEN'S
HEALTH IS IN DETAIL HERE FOR
FUTURE REFERENCE.
I WAS EXCITED AND HONORED TO BE
WITH THE FIRST LADY AS SHE HAS
BEEN PUSHING THIS OUT.
I HAD THE CHANCE TO GO WITH HER
TO VISIT RESEARCH TRIANGLE IN
NORTH CAROLINA, GETTING THE WORD
OUT.
THEY HAVE A LOT OF INNOVATION
AND SMALL BUSINESS AND
TECH-FOCUSED INTEREST AND SHE
SAID SO MANY OF US, SO MANY
WOMEN IN OUR LIVES, SUFFER FROM
HEALTH CONDITIONS FOR WHICH WE
SIMPLY DON'T HAVE THE ANSWERS OR
SOLUTIONS.
THAT'S WHY THIS EFFORT IS SO IM.
DR. GENEVIEVE NEAL-PERRY WAS IN
THE GROUP.
NEXT WEEK IS NATIONAL WOMEN'S
HEALTH WEEK.
WE WILL BE LAUNCHING THE
STRATEGIC PLAN FOR WOMEN'S
HEALTH RESEARCH, LAUNCHING
WOMEN'S HEALTH FACTSHEETS AND
UNDERSTUDIED AND UNDERREPORTED
AND UNDERREPRESENTED HEALTH DATA
BOOKS, FEATURING VIVIAN PINN
SYMPOSIUM WEDNESDAY AND
ROUNDTABLE ON MENOPAUSE RESEARCH
THURSDAY.
DR. MONICA BERTAGNOLLI WILL
ANNOUNCE THE STRATEGIC PLAN AND
PARTICIPATING BY VIDEO IN THE
RESEARCH EVENTS.
NEXT SLIDE PLEASE.
THIS IS MY WRAP-UP SLIDE.
IF YOU FORGET EVERYTHING THAT
I'VE SAID UP TO NOW, I WANT YOU
TO REMEMBER THIS.
BECAUSE THIS IS EVERYTHING WE
ARE TRYING TO DO IN A SINGLE
STUDY.
IN THE LAB, WE NEED TO MAKE SURE
WE LOOK AT MALE AND FEMALE
ANIMALS BECAUSE THEY FUNCTION
DIFFERENTLY.
GENE EXPRESSION DIFFERENCE IN
MALE AND FEMALE ANIMALS.
THE ANIMAL MODELS DON'T
NECESSARILY RECAPITULATE THE SEX
DIFFERENCES YOU SEE IN HUMAN
DISEASE.
WE HAVE TO ACCOUNT FOR IT.
NEXT, IN ORDER TO TRANSLATE
THOSE PRE-CLINICAL STUDIES INTO
CLINICAL STUDIES WE NEED TO
THINK ABOUT WHAT DIFFERENCES
MIGHT EXIST BY SEX, SO IN PHASE
1 CLINICAL TRIALS ARE THERE
SAFETY SIGNALS WE NEED TO BE
CONCERNED ABOUT, DO WE NEED
DIFFERENT DOSAGES AS WE START
THE STUDY, IN CLINICAL TRIALS IN
HUMANS.
NEXT.
AND THEN WHEN WE HAVE THE
RESULTS OF THE STUDIES ARE WE
ANALYZING THOSE RESULTS BY SEX
SO WE CAN SEE FEMALE RESULTS,
MALE RESULTS, SEE WHETHER THERE
MIGHT SHALL DIFFERENCES -- BE
DIFFERENCES AND INFORM FUTURE
STUDIES.
SEX SPECIFIC RESULTS REPORTING
IS SO IMPORTANT, I'M GLAD TO
TELL YOU THAT THAT'S INCREASED
FOR PHASE 3 CLINICAL TRIALS
SUPPORTED BY NIH, NOW 47% OF
STUDIES REPORTING RESULTS FOR
MALES AND FEMALES.
AND THAT INFORMATION TRIGGERS
SCIENTISTS TO DEVELOP NEW IDEAS
THAT THEY CAN TAKE BACK INTO THE
LAB FOR CELL AND ANIMAL STUDIES.
BY DOING THAT, BY THINKING ABOUT
THE HEALTH OF WOMEN ACROSS EACH
STEP OF THE WAY, IN THE RESEARCH
CONTINUUM, WE'RE DOING RIGOROUS
RESEARCH, SUPPORTING INNOVATION,
DISCOVERY, AND EQUITY, AND WE'RE
SUPPORTING THE EDUCATION OF THE
FUTURE GENERATION OF HEALTH
PROFESSIONALS, AND IN THEIR
CAREERS, WE'RE SUPPORTING THE
DELIVERY OF INDIVIDUALIZED CARE,
WHICH EACH AND EVERY ONE OF US
DESERVES, BASED ON DATA.
EVIDENCE-BASED CARE COULD NOT BE
DELIVERED IF YOU DON'T HAVE THE
EVIDENCE.
WE'RE TRYING TO MAKE SURE THAT
EVIDENCE IS AVAILABLE FOR
EVERYONE AFFECTED BY THE
DISEASES WE STUDY, AND THAT IS
EVIDENCE THAT POLICYMAKERS CAN
USE TO INFORM THEIR HEALTH AND
SCIENCE POLICY.
NEXT.
SO IF YOU'D LIKE TO LEARN MORE
ABOUT ORWH, FOLLOW US HERE.
CHECK US OUT ON OUR WEBSITE,
SIGN UP FOR WEEKLY E-MAILS AND
QUARTERLY PUBLICATIONS WHERE WE
FEATURE WOMEN'S RESEARCH, MOST
RECENT ISSUE ON GLOBAL WOMEN'S
HEALTH.
SIGN UP FOR FREE SOURCES,
VARIOUS LEVELS, AVAILABLE TO THE
PUBLIC.
AND YOU CAN FOLLOW US ON SOCIAL
MEDIA AS INDICATED HERE.
THANK YOU SO MUCH FOR THIS
INVITATION.
I'M SORRY I'M A COUPLE MINUTES
OVER, TRISH.
IT'S MY PLEASURE TO BE HERE WITH
YOU TODAY.
THANK YOU SO MUCH FOR YOUR
ATTENTION.
>> JANINE, THANK YOU FOR YOUR
LEADERSHIP.
WE AT NIH APPRECIATE IT, ACROSS
THE GOVERNMENT, YOU'VE BEEN A
REAL DRIVER OF WOMEN'S HEALTH
AND YOU CONTINUE TO BE CENTRAL
TO OUR PROGRESS IN THIS AREA.
SO WE ARE VERY APPRECIATIVE OF
OUR PARTNERSHIPS WITH YOU, AND
DELIGHTED YOU WERE ABLE TO CARVE
OUT TIME FROM YOUR INCREDIBLY
BUSY SCHEDULE TO JOIN US.
SO THANK YOU.
I KNOW YOU HAVE LIMITED TIME
HERE, SO WHEN WE GET TO
QUESTIONS IF PEOPLE HAVE
QUESTIONS MAYBE WE'LL START WITH
THOSE TO GET THOSE IN.
IF WE GET QUESTIONS AFTER YOU
LEAVE, IF YOU DON'T MIND, WE'LL
PASS THEM ALONG TO YOU.
WE HAVE A COUPLE PEOPLE WHO
JOINED US, AFTER OUR
INTRODUCTIONS.
CHRISTINA, IF YOU'D LIKE TO
INTRODUCE YOURSELF.
>> HELLO, CHRISTINA WEST, I WORK
IN OFFICE OF ASSISTANT SECRETARY
FOR PLANNING AND EVALUATION.
IN THE BEHAVIORAL HEALTH
DIVISION THERE, AND MY WORK IS
CENTERED AROUND MATERNAL AND
CHILD BEHAVIORAL HEALTH ISSUES,
I'VE DONE A LOT OF WORK ON
OPIOID EXPOSURES AND HAVE ALSO
BEEN WORKING ON ALCOHOL.
>> AND CHRISTY, INTRODUCE
YOURSELF.
>> SURE.
THANK YOU.
CHRISTY KAVULIC, DEPARTMENT OF
EDUCATION, OFFICE OF SPECIAL
EDUCATION PROGRAMS, OFFICE
ADMINISTERS INDIVIDUALS WITH
DISABILITIES EDUCATION ACT,
WHICH PROVIDES SERVICES FOR
INFANTS, TODDLERS, PRESCHOOL
CHILDREN, AND CHILDREN AND YOUTH
WITH DISABILITIES, AND I LOOK
FORWARD TO PARTICIPATING ON THIS
GROUP.
>> FANTASTIC.
WELCOME.
FOR PEOPLE ON THE VIDEOCAST, YOU
CAN SUBMIT QUESTIONS AND
COMMENTS BY COMPLETING AN ONLINE
FEED BACK FORM ON THE VIDEOCAST
PAGE, IF YOU HAVE QUESTIONS WE
WOULD BE DELIGHTED TO ENTERTAIN
THEM.
IF ANYONE AROUND THE ROOM OR
ONLINE HAS QUESTIONS FOR OUR
PANELISTS, I KNOW THERE'S A LOT
THAT YOU HEARD THIS MORNING, AND
I'M SURE THERE ARE MANY THINGS
CIRCULATING IN YOUR MINDS.
SO OPEN TO QUESTIONS.
IF NOT, I'M GOING TO TAKE THE
PREROGATIVE OF ASKING ONE.
DR. JONES, I KNOW YOU MENTIONED
YOU'RE PILOTING TO SEE IF YOU
CAN DIAGNOSIS WITH PSYCHOLOGIST
IN A RAPID SCREEN, DOES THAT
STILL REQUIRE MATERNAL
CONFIRMATION OF ALCOHOL USE
ALREADY ARE YOU ABLE TO DIAGNOSE
ILLS IN THE ABSENCE OF THAT.
>> IT STILL REQUIRES
CONFIRMATION OF ALCOHOL, WHICH
IS OBVIOUSLY A PROBLEM.
THERE ARE WAYS TO GET AT IT
THROUGH THE CHILD THEMSELVES, IF
THEY ARE OLD ENOUGH, OBVIOUSLY.
SO, WE HAVE IN OUR PILOT
PROJECTS, WE ARE LOOKING BECAUSE
OCYR WANTS US TO, AT INDIVIDUALS
FROM 18- 22.
>> THANKS.
AND I AM GOING TO THANK DR.
CLAYTON FOR PARTICIPATING WITH
US FROM ORWH IN THE MODELS OF
CONTINUUM OF CARE INITIATIVE
THAT NIAAA IS PILOTING FROM
CHILD BEARING AGE WHICH INCLUDES
ADOLESCENCE THROUGH MENOPAUSE.
SO, WE'RE ENCOURAGED BY YOUR
APPROACH ACROSS THE LIFESPAN,
UNDERSTANDING THAT IT'S NOT JUST
DURING PREGNANCY THAT WE NEED TO
CONSIDER THE HEALTH OF WOMEN.
AND CONSIDERING THAT FASD IS
ALSO ONE THOSE HIDDEN CONDITIONS
IN SOME WAYS, PROVIDERS DON'T
UNDERSTAND IT, DON'T NECESSARILY
LOOK FOR IT, AND IN THE PUBLIC
IN GENERAL, SO ANY THOUGHTS ON
OTHER WAYS WE MIGHT PARTNER WITH
YOU AS YOU GO FORWARD ESPECIALLY
WITH THE WOMEN'S HEALTH
INITIATIVE?
>> THANK YOU SO MUCH, TRISH.
YOU AND GEORGE HAVE BEEN
INCREDIBLE LEADERS IN THIS
SPACE.
GEORGE, RIGHT AWAY, AT THE VERY
BEGINNING WHEN I STARTED TALKING
ABOUT SABV HE WAS VERY WELCOMING
AND NIAAA HAS BEEN FANTASTIC
PARTNERS.
DEIDRA ROACH AND OTHERS.
SO WE APPRECIATE YOUR
PARTNERSHIP.
I THINK THAT ONE OF THE ISSUES
THAT I THINK WE COULD ENHANCE,
AREAS WE COULD ENHANCE,
COLLABORATION ACROSS THE
I.C.s.
BRINGING IN OTHER PARTNERS LIKE
YOU WORK A LOT WITH NIDA,
NATIONAL INSTITUTE ON DRUG
ABUSE, WE CAN BRING IN NICHD AND
OTHERS, WE NEED TO FIND WAYS TO
LEVERAGE THE AMAZING WORK THAT'S
ALREADY BEING DONE BY YOU AND
OTHERS, AND HAVE THAT WORK
TOGETHER IN A FOCUSED WAY SO
THERE'S ATTENTION TO HEALTH OF
WOMEN RIGHT AT THE CENTER.
AND SO I LOOK FORWARD TO WORKING
WITH YOU, IN BODIES LIKE THIS
AND OTHERS, AND IT'S CRITICAL TO
GET THE WORD OUT ABOUT ALL OF
THIS INFORMATION, SHARING THIS
INFORMATION WIDELY SO PEOPLE
UNDERSTAND THAT THERE IS A
FOCUSED ATTENTION, AS WE HEARD
FROM KATHY MITCHELL EARLIER
THERE'S INCREDIBLE NEED FOR THE
WORD TO GET OUT AS WELL.
I LOOK FORWARD TO WORKING WITH
YOU AND OTHERS ON THIS.
THANKS, TRISH.
>> I WAS HEARTENED TO SEE THE
PARTNERSHIP ACROSS FEDERAL
AGENCIES BEYOND NIH BECAUSE I
THINK THAT'S WHERE WE CAN MAKE A
LOT OF PROGRESS AS WELL.
I KNOW CJ, YOU HAVE YOUR HAND
UP.
PLEASE TAKE IT AWAY.
>> SO, FIRST OF ALL I WANT TO
SAY ALL THE PRESENTATIONS WERE
GREAT.
I DON'T WANT TO PLAY FAVORITES
BUT MY FAVORITE WAS KATHY
MITCHELL.
I WANT TO KNOW THOUGH,
MS. CLAYTON, WHEN YOU'RE TALKING
ABOUT OVERALL HEALTH, WHAT ARE
THE HEALTH INITIATIVES FOR WOMEN
WHO HAVE FASD, WHO ARE GIVING
BIRTH TO BABIES, I KNOW THAT WE
GET A QUALITY -- WE DID A
QUALITY LIFE SURVEY, OVER 408
COMORBIDITIES, WITH BEING
DIAGNOSED WITH FASD, WONDERING
IF THERE ARE PROJECTS ADDRESSING
THAT AND MAYBE COUNSELING FOR
PEOPLE WHO HAVE FASD WHO WANT TO
DEAL WITH THE GRIEF AND BECOME
OKAY WITH THEIR DIAGNOSIS
BECAUSE I KNOW THERE IS A LOT OF
STIGMA.
I OWE MY ABILITY TO BE OKAY TO
KATHY MITCHELL AND MOMS LIKE
HER.
>> THANK YOU SO MUCH FOR THAT
QUESTION, CJ.
SO, FIRST, THE HEALTH OF PEOPLE
BEFORE THEY BECOME PREGNANT IS A
CRITICAL PIECE OF WHAT HAPPENS
TO THEM WHEN THEY ARE PREGNANT
AND FOR THE PREGNANCY OUTCOME.
I THINK YOU'RE HIGHLIGHTING THE
IMPORTANCE OF US CONSIDERING
FASD AS PART OF THE COMPONENT OF
THE HEALTH OF PEOPLE BEFORE THEY
BECOME PREGNANT.
NATIONAL INSTITUTE OF CHILD
HEALTH AND HUMAN DEVELOPMENT HAS
A SPECIFIC COMPONENT, FOCUSED IN
A WAY THEY PRESENT THIS
INFORMATION, FOCUSED ON
INDIVIDUALS WITH DIFFERENT
ABILITIES, AND THAT INCLUDES A
WIDE RANGE OF CONDITIONS, I
WOULD IMAGINE THAT FASD MAY BE
INCLUDED IN THE REMIT THERE BUT
YOU'VE GIVEN ME A QUESTION I'M
GOING TO FOLLOW UP WITH
DIRECTLY, DO THEY INCLUDE THAT,
THAT WOULD MEAN INVESTIGATORS
COULD APPLY FOR RESEARCH FUNDING
TO RESEARCH EXACTLY THE QUESTION
YOU JUST ASKED.
BUT NOSI, NOTICE OF SPECIAL
INTEREST I SHOWED, RIGHT NOW
ALLOWS PEOPLE TO APPLY FOR THAT
RESEARCH BECAUSE NICHD SIGNED ON
TO THAT FUNDING OPPORTUNITY.
SO SOMEBODY WANTS TO DO THAT
RESEARCH, AND LEARN MORE, SO WE
HAVE THE DATA, SO THAT IN THE
FUTURE WE'LL BE ABLE TO SAY,
HERE'S WHAT WE KNOW, AND BE ABLE
TO PROVIDE EVIDENCE-BASED
COUNSEL AND CARE, STEPS THAT
YOU'RE TALKING ABOUT THE NEED
FOR, WE NEED THAT RESEARCH TO BE
DONE.
WE'RE TRYING TO MAKE A PATHWAY
BUT NEED OUR ACADEMIC COMMUNITY
TO COME UP WITH ROBUST
APPLICATIONS TO FUND THAT
RESEARCH.
I'M FORGETTING THE SECOND PART
OF YOUR QUESTION.
>> JUST WONDERING IF THERE WERE
ANY --
>> OH, YES.
>> RESEARCH FOR JUST THE
WELL-BEING BECAUSE STIGMA IS SO
HIGH AGAINST BIRTH MOMS, AND I
DON'T THINK IT SHOULD BE.
HOWEVER, WHEN I WAS YOUNGER I
DID BUY INTO THE STIGMA.
AND BECAUSE OF THE BRAVERY AND
BECAUSE OF THE PRIVILEGE OF
HEARING WOMEN LIKE KATHY
MITCHELL, I'M OKAY WITH, A, MY
DIAGNOSIS AND BECAUSE I DIDN'T
KNOW MY BIRTH MOM I'M OKAY WITH
HER.
NOT THAT SHE NEEDED ME TO BE.
BUT THESE ARE REALLY CRUCIAL
PIECES THAT I THINK PEOPLE
FORGET OR OVERLOOK WHEN THEY ARE
TALKING ABOUT MOMS WHO DRINK,
THAT THEY ARE PEOPLE, THEIR
CHILDREN LOVE THEIR MOMS,
WHETHER THEY ARE WITH THEM OR
NOT.
AND WHAT I THINK KATHY SAID, THE
MAYA ANGELOU QUOTE, ABOUT WORDS,
WE-- I AM AND A LOT OF ALC
MEMBERS ARE IN A MIASMA OF WORDS
NOT NICE, NOT ENCOURAGING, SO IF
THERE ARE PROGRAMS TO HELP
PEOPLE WITH THE GRIEF PROCESS,
OR MAYBE ACCEPTANCE PROCESS
BECAUSE IT'S DESPERATELY NEEDED
FOR US TO BE OKAY.
>> THANK YOU, FIRST OF ALL.
SO MUCH FOR SHARING YOUR
PERSONAL PERSPECTIVE.
I APPRECIATE THAT PERSONALLY.
THIS IS EXACTLY WHY WE NEED TO
HAVE CONVERSATIONS LIKE THIS.
SO THAT WE CAN MAKE SURE THESE
PERSPECTIVES ARE INCLUDED IN
PROGRAMS WE DESIGN SO WHEN WE
PARTNERS WITH AGENCIES THAT
DELIVER CARE, THAT THEY CAN
INCORPORATE THAT INTO THE CARE
DELIVERY AND PROVIDE PROGRAMS
LIKE THE PROGRAMS YOU'RE TALKING
ABOUT.
WE DO HAVE RESEARCH THAT
ADDRESSES STIGMA.
WE DO HAVE MENTAL HEALTH
RESEARCH THAT TALKS ABOUT
SPECIFIC CONCERNS OF WOMEN AND
MEN.
AND THIS WOULD BE A TOPIC THAT
COULD COME UNDER THE MENTAL
HEALTH OF WOMEN BUT THE PRE---
AGAIN, I THINK WE NEED TO REALLY
FOCUS ON THE HEALTH OF WOMEN OF
REPRODUCTIVE AGE, 14-45, AND ALL
ASPECTS OF HEALTH BECAUSE AS WE
KNOW MENTAL HEALTH IS SO
CRITICAL TO PHYSICAL HEALTH.
THEY INTERACT.
AND THEY, AGAIN, I'M A BIT OF
REPETITIVE HERE ABOUT NEED TO
INTEGRATE THIS TOGETHER AND TAKE
INTERDISCIPLINARY APPROACHES,
THAT'S INNOVATIVE WHEN YOU WORK
TOGETHER.
SO THANK YOU SO MUCH FOR SHARING
YOUR PERSPECTIVE FOR KATHY
MITCHELL SHARING PERSPECTIVE, SO
GLAD YOU'VE BEEN IN TOUCH WITH
HER AND HER GROUP AND ARE
GETTING SUPPORT THAT YOU NEED
AND ARE HERE AS PART OF THIS
GROUP.
>> WE'RE LUCKY AROUND THE TABLE,
VIRTUAL TABLES TO HAVE
REPRESENTATIVES FROM NATIONAL
INSTITUTE OF MENTAL HEALTH,
NATIONAL INSTITUTE OF CHILD
HEALTH, HEALTH DISPARITIES, AND
NATIONAL INSTITUTE OF DRUG
ABUSE, SO AS WELL AS THE
PROVIDERS FROM AGENCIES AROUND
THE TABLE SO WE'RE ALL HEARING
YOUR MESSAGES AND FIGURING OUT
WHERE WE CAN HELP IN THESE
DIFFERENT DOMAINS.
THANK YOU.
OTHER QUESTIONS?
CHRIS?
>> THANK YOU VERY MUCH TO ALL
THREE PRESENTERS.
KATHY, I HAD A QUESTION FOR YOU.
YOU TALKED ABOUT THE NEED TO
INFORM PROVIDERS AND YOUR
EXPERIENCE, AND WHAT ADMITTED
HAS BEEN SOUNDS LIKE FRUSTRATING
TOO, I WAS THINKING PARTICULAR
ABOUT MENTAL HEALTH SERVICES
THOUGH IN PARTICULAR.
AND WE THINK ABOUT NEED TO
INFORM PROVIDERS, INFORM OUR
MENTAL HEALTH PROVIDERS AS WELL.
WONDERING IF YOU COULD SHARE
MORE ABOUT YOUR EXPERIENCE WITH
TRYING TO INTERFACE WITH MENTAL
HEALTH SERVICES, ACADEMIC
SERVICES, WHAT HAS THE THE FIT
FELT LIKE OR NOT FELT LIKE AS A
MOTHER TRYING TO GET HELP FOR
YOUR CHILDREN?
>> I THINK SADLY, YOU KNOW, I'LL
HAVE TO SAY PRETTY MUCH ACROSS
THE BOARD MENTAL HEALTH
PROVIDERS ARE REALLY NOT AWARE
AT ALL ABOUT WHAT FETAL ALCOHOL
SPECTRUM DISORDERS ARE.
AND IT REALLY RESULTS IN VERY
POOR OUTCOMES THAT COULD BE --
YOU KNOW, THE ANSWERS ARE SO
SIMPLE IN TERMS OF, YOU KNOW,
EDUCATION IN SCHOOLS, PUTTING
THE QUESTIONS ON THE EXAMS, YOU
KNOW.
WE COULD BE DOING SO MUCH MORE
BUT THERE'S A COMPLETE
DISCONNECT FROM EARLY CHILDHOOD
ALL THE WAY INTO ADULTHOOD,
WHERE VERY FEW PEOPLE THAT LIVE
WITH THESE DISORDERS ARE EVER
REALLY DIAGNOSED.
THEY ARE MISDIAGNOSED WITH A
WHOLE ARRAY OF MENTAL HEALTH
ISSUES, AND, YOU KNOW, I THINK
IT'S A WONDERFUL THING TO HEAR,
YOU KNOW, THIS INITIATIVE OUT OF
THE WHITE HOUSE AND THIS
COLLABORATIVE INTERAGENCY
COLLABORATION AND PARTNERSHIP
BECAUSE, OKAY, MAGIC WAND TIME
AGAIN, THE BEAUTIFUL RESEARCH
HAS COME OUT OF ALL OF YOUR
AGENCIES.
I MEAN, I'M MOST FAMILIAR WITH
NIAAA.
BUT THE RESEARCH THAT'S BEEN
DONE, THERE SEEMS TO BE A
DISCONNECT WHERE EVEN WITH THE
AUTOIMMUNE ISSUES, INCREASE IN
AUTOIMMUNE, WHEN THERE'S, YOU
KNOW, PRENATAL EXPOSURE.
YOU KNOW, WE REALLY DON'T
UNDERSTAND THROUGH THE LIFESPAN
WHAT IS HAPPENING TO PEOPLE THAT
HAVE BEEN EXPOSED.
WE TALKED ABOUT THE HOMELESSNESS
ISSUE IN SAN FRANCISCO BEFORE
THE MEETING.
YOU BETTER BELIEVE A LOT OF
THOSE FOLKS HAD MOTHERS WHO
DRANK DURING PREGNANCY.
THERE'S THIS DISCONNECT, AND
THERE'S ANOTHER ENVIRONMENT.
I'VE WORKED A LOT WITH SHELTERS,
WHERE THE PEOPLE REALLY WANT TO
DO A GOOD JOB AND HELP PEOPLE
BUT THEY REALLY HAVE NO CLUE
ABOUT THEIR BRAIN DIFFERENCES
AND HOW TO DESIGN THEIR
PROGRAMS.
SO THAT'S -- IT'S A GREAT
QUESTION, A BIG QUESTION.
BUT IT'S A SAD QUESTION FOR ME
BECAUSE, YOU KNOW, AFTER 40
YEARS WITH THIS LIVED
EXPERIENCE, IT'S LIKE I FEEL
LIKE WE HAVEN'T REALLY MADE THE
IMPACT THAT WE COULD.
IT'S REALLY GETTING -- WE HAVE
TO REALLY INJECT THIS THING IN
HERE SO IT STICKS.
THAT'S EXAMS ON QUESTIONS, IT'S
MEASURABLE OUTCOMES, IF THEY ARE
GOING TO GET GOVERNMENT MONEY,
HOW ARE YOU GOING TO INTEGRATE
THIS?
I THINK WE COULD MAKE A BIG
DIFFERENCE BUT IT HELPS MENTAL
HEALTH PROVIDERS WHEN THEY
UNDERSTAND
WOW, IT HELPS THEM GET BETTER
OUTCOMES.
>> 30 YEARS AGO THERE WAS ONE
LINE IN A DEVELOPMENTAL TEXT
BOOK, DISCOURAGING TO HEAR IT'S
STILL A PROBLEM 30 YEARS LATER,
YEAH.
THANK YOU.
>> I THINK WE'VE ALL BENEFITED
FROM HEARING IN OUR PAST COUPLE
MEETINGS FROM THE ADULT
LEADERSHIP COMMITTEE OF
INDIVIDUALS WITH FASD AND
CAREGIVERS BECAUSE IT GIVES US
THE PERSPECTIVE OF WHAT WE ARE
MISSING AND I KNOW JAN LUCKY
WITH HER HAND UP AND PROBABLY
WANTED TO ADD TO MAYBE SOME
THINGS KATHY SAID.
SO JAN?
>> WHILE WE'RE WAITING FOR JAN
--
>> SORRY.
I HAD TO UNMUTE.
IT WOULDN'T UNMUTE.
TWO OR THREE THINGS I WAS
THINKING.
ONE IS FOR DR. CLAYTON.
WHEN YOU MENTIONED UNDERSTUDIED,
UNDERREPRESENTED, UNDERREPORTED,
HAD YOU THOUGHT OF WOMEN WITH
FASD SPECIFICALLY AS A GROUP,
NOT JUST WITHIN THE CONTEXT OF
OTHER DISABILITIES BUT IS THAT
GROUP SPECIFICALLY BECAUSE I
THINK THERE IS A NEED THERE AND
IN SOME WORK I'VE DONE IN THE
LAST FEW YEARS WITH WOMEN WITH
FASD AND I'M THINKING OF JUST
THAT AT THE RECENT SEATTLE
CONFERENCE A SESSION IN THE
ADULT STREAM FOR PEOPLE WITH
FASD THAT WAS BROKEN OUT INTO
ONE FOR WOMEN ONLY, ONE FOR MEN
ONLY.
WITH THE CHANCE TO ASK
QUESTIONS.
I WAS STRUCK BY SOME OF WHAT YOU
SAID.
AND WHAT THE WOMEN IN THAT
SESSION SAID AROUND THE
REPRODUCTIVE ISSUES THAT WERE IN
EVERY SINGLE WOMAN IN THAT
GROUP.
AND SO AS AN UNDERSTUDIED GROUP,
GOING FORWARD BOTH FROM THE
REPRODUCTIVE HEALTH ISSUES AND
FROM THE OTHER HEALTH ISSUES
THAT WE'RE REASONABLY CERTAIN
ARE MORE COMMON IN THAT GROUP
HAD YOU THOUGHT ABOUT THEM AS A
SPECIFIC GROUP IS ONE QUESTION.
AND THEN A GENERAL QUESTION,
PIGGYBACKING ON WHAT CJ SAID
WITH RESPECT TO KATHY AND SORT
OF A GENERAL THING AROUND HAVE
WE LOOKED AT IN THE MENTAL
HEALTH PIECE, WHICH IS SO
PROBLEMATIC, NOT JUST FOR PEOPLE
WITH FASD BUT HAVING DONE A
GREAT DEAL OF WORK WITH FAMILIES
AND SEEING THE UNRESOLVED GRIEF
THAT NO ONE IS ADDRESSING WITHIN
THE CONTEXT OF FASD THAT NEEDS
TO BE DONE, NOT JUST IN BIRTH
FAMILIES BUT IN ADOPTIVE
FAMILIES IN PARTICULAR.
AND LOOKING AT THAT FROM A
MENTAL HEALTH APPROACH KIND OF
FUNDING PIECE THAT REALLY NEEDS
TO BE ADDRESSED.
AND TO ME HAVING DONE THIS FOR
40 YEARS, THIS IS A REALLY
SIGNIFICANT OVERSIGHT.
SO I'LL JUST LEAVE IT THERE.
THOSE TWO THINGS.
>> THANK YOU SO MUCH FOR YOUR
QUESTIONS, JAN.
SO THE FIRST ONE IS WE WANT TO
BE ABLE TO BE BROAD, WHEN WE PUT
OUT NOTICES OF FUNDING
OPPORTUNITIES, BECAUSE WE DON'T
KNOW WHERE ALL OF THE BRILLIANT
IDEAS ARE GOING TO COME FROM.
SO WE DID NOT SPECIFY FASD PER
SE IN THE UNDERSTUDIED,
UNDERRECORDED OR
UNDERREPRESENTED POPULATIONS OF
WOMEN, NOTICE OF SPECIAL
INTEREST, AN ADMINISTRATIVE
SUPPLEMENT PROGRAM.
HOWEVER, BASE ON TODAY'S
DISCUSSION I WOULD THINK THERE
WOULD BE QUITE A BIT OF INTEREST
IN APPLYING FOR THAT KIND OF
FUNDING AND THAT WOULD BE AN
AREA THAT WE WOULD BE RECEPTIVE
TO RECEIVING APPLICATIONS ON IN
PARTNERSHIP WITH OUR INSTITUTE
AND CENTER COLLEAGUES.
I KNOW THAT NIMH IS ON THE
MEETING.
AND SO THERE MAY BE RESPONSES
THEY CAN PROVIDE, PERHAPS LATER,
OR AT THE BREAK, FOR YOU
REGARDING THE ABSOLUTELY
HEARTBREAKING CONCERN THAT YOU
IDENTIFIED AROUND UNRESOLVED
GRIEF RELATED TO FASD, ALL OF
THESE FACTORS ARE PART OF THE
CONSTELLATION OF CIRCUMSTANCES
THAT AFFECT OUR HEALTH.
AND SO I KNOW THAT NIMH IS
COMMITTED TO UNDERSTANDING THOSE
AND PUTTING -- GENERATING DATA
THAT COULD BE USED TO DELIVER
BETTER CARE FOR EVERYONE.
BUT I'M NOT FAMILIAR WITH A
SPECIFIC PROGRAM.
I REALLY APPRECIATE ALL OF YOUR
QUESTIONS AND INTERESTS IN THE
TOPIC.
I LEARNED A LOT.
THANK YOU ALL, SPEAKERS AND
COLLEAGUES.
AND ATTENDEES.
I AM GOING TO NEED TO BREAK AWAY
FOR ANOTHER MEETING BUT THANK
YOU AGAIN, DR. POWELL, AND DR.
BALACHOVA, FOR INVITING ME TO BE
WITH YOU TODAY.
THANK YOU, EVERYONE.
>> WE'RE APPRECIATIVE YOU CARVED
OUT THE TIME TO JOIN US.
THANK YOU AND GOOD LUCK GOING
FORWARD WITH THE WOMEN'S HEALTH
INITIATIVE.
I UNDERSTAND WE HAVE A QUESTION
FROM THE AUDIENCE.
>> IT'S TWO COMMENTS.
FIRST ONE WILL BE COMMENT THAT
I'LL MAKE TO CHRIS' QUESTION,
WHICH SPEAKS TO THE POWER OF
THIS COMMITTEE, ACTIVITIES THAT
WERE BEGUN MANY YEARS AGO THAT
EVENTUALLY LED TO THE DSM-V
ADOPTING THE NDPAE DIAGNOSIS, A
DIAGNOSIS MENTAL HEALTH
PROVIDERS CAN GIVE TO PATIENTS
FOR INDIVIDUALS THAT ARE
PRENATALLY EXPOSED TO ALCOHOL
BUT MIGHT NOT HAVE SOME PHYSICAL
FEATURES.
SO I DO WANT TO MAKE THAT
ACKNOWLEDGMENT.
WE DO HAVE A COMMENT FROM THE
AUDIENCE, FROM MARY O'CONNOR,
WHO COMMENTS THAT SHE CONTINUES
TO WORK IN THE AREA OF
PSYCHIATRIC ILLNESS IN
INDIVIDUALS WITH FASD AND BRINGS
UP THE ISSUE ON EVERY ARTICLE
SHE REVIEWS OR PRESENTATION SHE
MAKES.
SO --
>> THANK YOU, MARY.
THAT'S GOOD NEWS AS WELL BECAUSE
WE DO, AS KATHY AND DR. JONES
AND OTHERS INDICATE, WE DO NEED
TO GET THE WORD OUT.
WE STILL HAVE A LONG WAY TO GO
FROM NIAAA PERSPECTIVE.
WE'VE CREATED A HEALTH CARE
PROFESSIONALS CORE RESOURCE THAT
INCLUDES A SECTION ON FASD,
WE'RE ON THE WORK TRYING TO PUT
TOGETHER A CURRICULUM FOR
MEDICAL SCHOOLS, BUT CERTAINLY
SOME ISSUES THAT YOU'VE
HIGHLIGHTED WE NEED TO HIT
HARDER ON.
THANK YOU.
WE'RE GOING TO TAKE TIME TO
BREAK FOR LUNCH.
WE'RE SCHEDULED TO RECONVENE AT
1:10 THIS AFTERNOON.
WE HOPE TO SEE ALL OF YOU BACK
THEN.
SO THANK YOU.
WELCOME BACK AFTER LUNCH BREAK.
WE WOULD LIKE TO BEGIN ON TIME
TO BE ON TIME.
AGAIN, WELCOME, EVERYBODY, TO
PUBLIC MEETING OF THE
INTERAGENCY COORDINATING
COMMITTEE ON FETAL ALCOHOL
SPECTRUM DISORDERS.
WE HAVE OUR MEMBERS IN THIS
ROOM.
WE ALSO HAVE MEMBERS ON ZOOM.
AND WE HAVE VIDEOCAST AND WE
WELCOME QUESTIONS AND COMMENTS
FROM VIDEOCAST PARTICIPANTS.
YOU CAN SUBMIT QUESTIONS AND
COMMENTS ON THE BOX.
WE APPRECIATE YOU COMING TO TO
BE WITH TODAY.
I'LL BEGIN WITH BRIEF
INTRODUCTIONS AND UPDATE AND
WE'LL HEAR PRESENTATIONS BY
MEMBERS WHEN THEY REPORT ON
AGENCY'S ACTIVITIES FROM 2023.
AGAIN, GOOD AFTERNOON.
I'M TATIANA BALACHOVA.
I WILL GIVE BRIEF UPDATE ON
ICCFASD, WE HAVE NEW MEMBERS, I
WANT TO GIVE BRIEF SUMMARY OF
COMMITTEE TODAY.
OKAY.
COMMITTED TO IMPROVE
COMMUNICATION AND COLLABORATION
RELATED TO FAS D OUR THE
ECONOMY DISCUSSES RECENT
PROGRAMS AND PLAN ACTIVITIES
WHICH WE WILL DO DURING THE
YEAR.
PROGRAM OF FASD RECOGNIZED BY
UNITED STATES GOVERNMENT, YOU
KNOW, MORE THAN 20 YEARS AGO,
ALMOST 30 YEARS NOW, U.S.
CONGRESS ASKED INSTITUTE OF
MEDICINE TO DEVELOP REPORT TO
IMPROVE WORK ON FASD,
RECOMMENDING THAT INTERAGENCY
COMMITTEE WILL BE ESTABLISHED TO
COORDINATE FEDERAL EFFORTS AND
IMPROVE COMMUNICATION BETWEEN
FEDERAL AGENCIES.
AND THIS COMMITTEE HAS BEEN
SPONSORED AND CHAIRED BY NIAAA
SINCE 1996.
THIS YEAR WE HAVE A FEW MEMBERS
WHO WE LOST, 2023, I WANTED TO
RECOGNIZE ALL MEMBERS AND THEIR
WORK ON FASD, FIRST DR. SALLY
ANDERSON, ALMOST 20 YEARS WAS
SCIENTIFIC COORDINATOR FOR
ICCFASD, CONTRIBUTION WAS
AMAZING.
WE LOST SALLY ANDERSON, WE
REMEMBER HER WORK AND WILL CARRY
ON HER WORK.
WE ALSO LOST ERIN BAGALMAN,
ALTERNATIVE REPRESENTATIVE FROM
COMMITTEE, PASSION TO FASD
SUPPORTED INVOLVEMENT ON OUR
COMMITTEE.
JB KINLACHEENY REPRESENT FROM
INDIAN HEALTH SERVICES, INDIAN
AND SUBSTANCE ABUSE PROGRAMS,
OUR DEAR COLLEAGUES WILL BE
REMEMBERED, WE APPRECIATE WHAT
THEY HAVE DONE AND WILL REMEMBER
THEM AND IMPORTANT FOR US TO
CARRY OVER.
THIS SHOWS DIFFERENT AGENCIES
WHICH PARTICIPATE ON FASD AT
THIS TIME.
YOU CAN SEE IT'S REALLY A BIG
FORCE.
YOU CAN SEE MANY AGENCIES ON
FEDERAL GOVERNMENT WHICH REALLY
UNDERSTAND IMPORTANCE OF FASD
WORK, INCLUDED THIS IN THEIR
PROGRAM.
EACH OF THESE AGENCIES HAS
REPRESENTATIVE TO COMMITTEE AND
YOU WILL HEAR FROM EACH MEMBER
TO PRESENT BRIEF REPORT ON LAST
YEAR'S ACTIVITIES.
WE WILL WELCOME DEPARTMENT OF
EDUCATION BACK.
PREVIOUSLY DEPARTMENT OF
EDUCATION WAS VERY ACTIVE ON
COMMITTEE BUT WE DIDN'T HAVE A
MEMBER FOR FEW YEARS.
AND NOW WE ARE HAPPY TO WELCOME
DEPARTMENT OF EDUCATION BACK.
SO, HERE'S UPDATE ON MEMBERS.
DAWN LEVINSON AND TRACY KING,
PARTICIPATED ON COMMITTEE FOR
SEVERAL YEARS.
THEY NOW HAVE BEEN ASSIGNED
OTHER POSITIONS.
THEY HAVE BEEN PROMOTED WITHIN
THE INSTITUTES.
SO NOW WE HAVE NEW MEMBERS WHO
PARTICIPATE IN ICCFASD.
YOU HEAR REPRESENTATIVE TO
INTRODUCE THEMSELVES, VERY
BRIEFLY SAY WE ARE HAPPY TO HAVE
SONSY FERMIN FROM HRSA AND SHE'S
LICENSED CLINICAL SOCIAL WORKER,
SHE SERVES AS SENIOR PUBLIC
HEALTH ANALYST IN MATERNAL AND
CHILD HEALTH BUREAU, PROVIDES
GUIDANCE TO PROGRAMS WHICH HRSA
HAS RELATED TO FASD AND
TREATMENT FOR MATERNAL MENTAL
HEALTH AND SUBSTANCE USE
DISORDERS.
WELCOME ON THE BOARD.
WE ARE REALLY HAPPY TO HAVE YOU.
NEXT DR. MEGHAN O'NEILL,
CLINICIAN, SHE IS -- BEFORE SHE
JOINED IN 2023 WAS DOING
CLINICAL WORK AT CHILDREN'S
HOSPITAL IN DEVELOPMENTAL
PEDIATRICS, DIRECTS PROGRAM
RELATED DOWN SYNDROME AND
DEVELOPMENT OF DISABILITIES AT
NICHD.
SO WE WELCOME DR. O'NEILL AND
HER EXPERTISE TO COMMITTEE.
WE LOOK FOR WORK IN THIS FIELD.
AND NEXT WE HAVE CHRISTIE
KAVULIC AND SHE INTRODUCED
HERSELF THIS MORNING.
WE WELCOME CHRISTY, ASSOCIATE
DIRECTOR FOR DIVISION OF EARLY
CHILDHOOD AND FAMILY, IN OFFICE
OF SPECIAL EDUCATION PROGRAMS,
DEPARTMENT OF EDUCATION.
AND WITHIN THIS DIVISION SHE
OVERSEES DEVELOPMENT AND
MANAGEMENT DIFFERENT PROGRAMS
WHICH WORK AND HAVE GRANTS
FUNDED ON THE INDIVIDUALS WITH
DISABILITIES EDUCATION ACT AND
PREPARE EFFECTIVE PROGRAMS,
EVIDENCE-BASED PROGRAMS TO
IMPLEMENT WITHIN THE DEPARTMENT
OF EDUCATION.
SO WELCOME ON BOARD.
WE ALSO HAVE -- WE SPOKE TODAY
WE HAVE TWO NEW AD HOC MEMBERS
FOR THIS COMMITTEE, WHICH IS
VERY IMPORTANT TO US.
CJ LUTKE AND JAN LUTKE, BOTH
ONLINE, WE LOOK FORWARD TO THEM
PARTICIPATING IN DISCUSSIONS AND
HEAR VIEWS AND OPINIONS.
AND ALTERNATE REPRESENTATIVES,
I'M NOT GOING TO INTRODUCE EACH
OF THEM BECAUSE THEY INTRODUCED
THEMSELVES THIS MORNING BUT I
WANTED TO SAY THAT WE HAVE
CONTACT INFORMATION FOR EACH
MEMBER ONLINE.
WELCOME TO EVERYBODY, WELCOME TO
THE PUBLIC, TO ACCESS THIS
INFORMATION, WE WANT TO HEAR
FROM YOU AND LOOK FORWARD TO
YOUR COMMENTS AND QUESTIONS.
WE HAVE MANY AGENCIES WHICH DO
VERY DIFFERENT WORK RELATED TO
FASD, AND BECAUSE CONDITIONS
REALLY COMPLICATED AND INVOLVE
DIFFERENT ASPECTS OF LIFE, YOU
CAN SEE ALL THE DIFFERENT AREAS
WHICH INVOLVED AND ALL THESE
AREAS INVOLVED AND CAN BE
REPRESENTED IN WORK WHICH
MEMBERS OF ICCFASD DO.
AT TIMES WE DEVELOP SPECIAL
FOCUSED WORKING GROUPS, AND THIS
TIME WE HAVE SCREENING AND BRIEF
INTERVENTION FOR PREGNANT AND
POSTPARTUM PEOPLE WORKING GROUP,
ESTABLISHED IN 2021.
IT WAS INITIATED BY CDC MEMBERS.
AND YOU CAN SEE OBJECTIVES OF
THIS GROUP ON THIS SLIDE.
YOU CAN SEE AGENCIES WHICH
CURRENTLY PARTICIPATE IN THIS
GROUP, AND NIAAA AND CDC
REPRESENTATIVES PROVIDE
LEADERSHIP FOR A GROUP.
VERY IMPORTANT HIGHLIGHT OF LAST
THREE YEARS OF ICCFASD AND
CARETAKERS, FRIENDS, WE SUPPORT
THIS MODEL, NOTHING ABOUT US
WITHOUT US.
WE'VE INVITED CHANGEMAKERS, FASD
CHANGE MANGERS TO PARTICIPATE IN
OUR MEETINGS.
WE HAVE REPRESENTATIVES IN
MEETINGS, PUBLIC MEETINGS,
EXECUTIVE MEETINGS, IN LAST
THREE YEARS.
AND FROM THAT WE LEARN HOW MUCH
MORE IMPORTANT AND VERY
DIFFERENT INFORMATION WE RECEIVE
WHEN WE SPEAK WITH PEOPLE WHO
HAVE EXPERIENCES THROUGH THEIR
LIVES.
WE BELIEVE IT'S CRITICALLY
IMPORTANT BECAUSE OF THIS WE
HAVE NOW AD HOC MEMBERS AND WE
WILL CONTINUE THIS DIALOGUE, WE
INVITE EVERYBODY TO PARTICIPATE
AND GET IN TOUCH WITH US.
I LISTED EVERYONE WHO
PARTICIPATED, NAMES OF PEOPLE
WHO PARTICIPATED IN OUR
MEETINGS, WE APPRECIATE EACH OF
YOU AND WE ALSO APPRECIATE
EVERYBODY WHO IS ON VIDEOCAST
AND WILLING TO SUBMIT US
COMMENTS AND QUESTIONS.
INFORMATION ABOUT ICCFASD IS ON
THE WEBSITE.
PLEASE GET IN TOUCH, ASK FOR ANY
HELP, ASK FOR ANY COMMENTS, ASK
TO COME TO OUR MEETINGS.
WE WELCOME YOUR COMMENTS AND DO
BELIEVE THAT OUR MEMBERS HAVE
REALLY VERY BROAD AREAS OF WORK
WHICH CAN HELP US TO ADDRESS
THIS CONDITION.
TO SAVE TIME, WE'RE NOT TAKING
QUESTIONS, BUT AFTER EACH FOUR
PRESENTATIONS WE HAVE TIME FOR
DISCUSSION.
WE WILL GET BACK TO DISCUSSION,
SO PLEASE HAVE QUESTIONS TO ME
AND MEMBERS FOR DISCUSSION.
WITH THAT, I'M GOING TO CALL FOR
MEMBERS TO REPORT ON ACTIVITIES
FROM 2023, AND HERE IS REMINDER,
SEND LIVE FEEDBACK, YOU SEE THIS
BOX ON MY SLIDE.
THE SAME LITTLE BOX IS ON
VIDEOCAST, SUBMIT YOUR QUESTIONS
AND COMMENTS.
WITH THAT, WE WILL BEGIN WITH
OUR FIRST PRESENTATION, AND ALSO
PRESENTATIONS OF KRISTINA WEST
FROM ASPE.
WELCOME.
>> HELLO, EVERYONE.
WHILE WE'RE DOING OUR SLIDES, I
WANT TO START BY -- I PRESENTED
MYSELF EARLIER, BUT I'M HAPPY TO
BE HERE TODAY TO TELL YOU ABOUT
OUR WORK ON ALCOHOL AND RELATED
SUBSTANCES.
MOST OF THE WORK MY OFFICE DOES
SPANS THE SUBSTANCES THAT WOMEN
AND INFANTS ARE EXPOSED TO.
I'LL BE TALKING TO YOU TODAY AND
A COUPLE POLICY INITIATIVES
AROUND AREA OF MATERNAL HEALTH
SPECIFICALLY.
SO, I AM IN THE OFFICE OF
ASSISTANT SECRETARY FOR PLANNING
AN EVALUATION, AN OFFICE PRIMARY
FUNCTION IS TO ADVISE THE
SECRETARY ON POLICY ON
EVIDENCE-BASED POLICYMAKING, SO
A LOT OF THE WORK THAT WE DO IS
AROUND COORDINATING INITIATIVES
ACROSS THE DEPARTMENT, THE HHS,
AREA, AND SERVE AS FORUM TO
COORDINATE AND CONNECT FEDERAL
EXPERTS AND AGENCIES ON THIS
TOPIC.
SO, WE HAVE REVIEWED AND
PROVIDED TECHNICAL ASSISTANCE ON
DRAFT LEGISLATION.
CONGRESS REACHES US FOR
TECHNICAL ASSISTANCE.
WE PARTICIPATE IN ICCFASD AND
INTERAGENCY WORK GROUP ON
SCREENING AND BRIEF INTERVENTION
THAT TATIANA MENTIONED WITHIN
THE ICCFASD, I MENTIONED THE
WORK GROUP THAT WE LEAD.
AND MOST RECENTLY, HHS HAS
STARTED A TASK FORCE ON MATERNAL
MENTAL HEALTH, SO OVER THE LAST
THREE TO FOUR MONTHS THE TASK
FORCE -- THE TASK FORCE IS --
INCLUDES FEDERAL AND NON-FEDERAL
MEMBERS, IT'S A FACA.
AND IT STARTED WITH THE 2023
CONSOLIDATED APPROPRIATIONS ACT.
BUT IT'S GOING TO INCLUDE A
NATIONAL STRATEGY AND REPORT OF
BEST PRACTICES, IT IS CALLED
MATERNAL MENTAL HEALTH BECAUSE
THAT'S WHAT THE LEGISLATION
CALLED FOR BUT IT DOES INCLUDE
SUBSTANCE USE DISORDER.
IT'S LED BY SAMHSA AND OASH, AND
AS WE PARTICIPATE -- ASPE
PARTICIPATES AS WELL, THERE'S A
STRATEGY RELEASED THIS MONTH
WHERE WE INCLUDE SUBSTANCE USE
DISORDER AS WELL.
NEXT I WANT TO TALK ABOUT THE
STUDY THAT WE PUBLISHED RECENTLY
THAT WAS INCLUDED IN THE JOURNAL
OF MATERNAL AND CHILD HEALTH
SPECIAL ISSUE ON PRENATAL
SUBSTANCE USE EXPOSURES, A STUDY
THAT LOOKED AT MATERNAL -- AT
NEONATAL ABSTINENCE SYNDROME AND
PRENATAL SUBSTANCE EXPOSURE AND
THAT INCLUDED ALCOHOL AS WELL AS
OPIOIDS, AND OTHER SUBSTANCES.
SO, IN THE GRAPH ON THE LEFT
ON THE TOP PRENATAL SUBSTANCE
EXPOSURES WHICH FOR THE FIVE
YEARS OF DATA THAT WE HAD FROM
2016 TO 2020 WE SAW A CONSISTENT
INCREASE ACROSS ALL STATES.
THIS IS USING MEDICAID DATA.
AND WHERE WE KNOW A LARGE AMOUNT
OF OUR POPULATION IS BEING
SERVED, OF THIS POPULATION IS
BEING SERVED.
AND ON THE BOTTOM IS NEONATAL
ABE ABSTINENCE DECLINE, MAYBE
BECAUSE OF CODING AND THE WAY
STATES DEFINE NEONATAL
ABSTINENCE SYNDROME BUT WE --
GIVEN WE SEE THAT CONSISTENTLY
FOR THE THREE YEARS IN A ROW, IT
IS SIGNIFICANT AND WE THINK THAT
MAKES US THINK PRENATAL
SUBSTANCE EXPOSURE INCREASED
POSSIBLY BECAUSE OF INTERACTION
WITH OTHER SUBSTANCES.
ESPECIALLY 38 STATES REPORTED
INCREASE IN PRENATAL SUBSTANCE
EXPOSURE, MAJORITY OF STATES,
THIS UPWARD TREND IN PRENATAL
SUBSTANCE EXPOSURE IN MEDICAID
BECAUSES DATA WE USED COINCIDES
WITH REPORTED INCREASES IN
MATERNAL AND PRENATAL MARIJUANA,
ALCOHOL, AND OTHER ILLICIT DRUG
USE, IN THE NATIONAL SURVEY OF
DRUG USE, AND THOSE REPORTED
BINGE DRINKING AMONG PREGNANT
WOMEN, SO ONE OF THE THINGS THAT
NEED TO BE DONE, WE CONCLUDE IN
THE PAPER, THAT EARLY
IDENTIFICATION AND TREATMENT
NEED TO BE IMPROVED,
SPECIFICALLY UNIVERSAL SUBSTANCE
USE SCREENING.
THERE WAS A DISCUSSION EARLIER
ABOUT DOCTORS AND HOW THEY TALK
TO PATIENTS AND THE NEED TO
FOCUS ON POSITIVE MESSAGING AND
POSITIVE EFFECTS OF TREATMENT IS
IMPORTANT.
AND SECONDLY, THE OTHER THING IS
REALLY IMPORTANT, THIS
INTEGRATION OF MATERNITY CARE
AND EDUCATION OF OB/GYN
PROVIDERS AROUND THIS AREA.
WE HAVE AN EARLIER PAPER THAT WE
PUBLISHED THAT WAS LOOKING AT
OB/GYN CARE, I'VE ADDED
MATERNITY CARE, TALKING ABOUT
CARE THAT ADDRESSED
GYNECOLOGICAL NEEDS, SUBSTANCE
USE, MENTAL HEALTH AND OTHER
SOCIAL SERVICE NEEDS, STRESSORS,
ESPECIALLY BECAUSE LARGE
PROPORTION OF WOMEN WITH
SUBSTANCE USE ARE ALSO SURVIVORS
OF TRAUMA AND HAVE EXPERIENCED
VIOLENCE.
AND SO THIS IS TO CONCLUDE WHAT
WE HAVE DONE BUT WE CONTINUE TO
FOLLOW THIS TOPIC.
AND AS I MENTIONED, HHS WILL BE
RELEASING MATERNAL MENTAL HEALTH
STRATEGY THIS MONTH, AND I WANT
TO POINT OUT THAT'S GOING TO BE
A LIVING DOCUMENT THAT WILL BE
UPDATED EVERY YEAR, FOR THE NEXT
FIVE YEARS, THAT'S WHAT THE
STATUTE MANDATES.
SO THERE WILL BE AN OPPORTUNITY
TO REVISE AND THINK MORE ABOUT
ALCOHOL PREVENTION, TREATMENT,
AND RESEARCH.
THANK YOU.
>> NOW WE HAVE NEXT
PRESENTATION, WE'RE GETTING
READY I WANT TO RECOGNIZE TO
VIDEOCAST WE RECEIVE YOUR
COMMENTS AT SOME POINT, AUDIO
WAS CUT, MAYBE THEY ALREADY FIX
IT, I JUST CANNOT SEE IT.
BUT WE DO HAVE RECORDING FROM
ZOOM SO WHEN VIDEOCAST WILL BE
PUBLISHED, IN I THINK FEW DAYS
OR ONE WEEK ONLINE, YOU WILL SEE
PRESENTATION SLIDES AND YOU WILL
SEE, YOU CAN HEAR WELL.
SO JUST TO -- IF YOU MISSED
SOMETHING IN CHRISTINA'S
PRESENTATION YOU CAN GO BACK AND
SEE IT.
I APOLOGIZE FOR TECHNICAL
ISSUES, THANK YOU FOR YOUR
FEEDBACK.
HOPEFULLY IT'S FIXED.
JUST ALSO WANTED TO TELL, WE
PLANNED TO HAVE PRESENTATION
FROM ADMINISTRATION FOR
COMMUNITY LIVING.
WE DON'T HAVE AMANDA AMANDA
REICHARD WITH US TODAY,
EMERGENCY SHE COULDN'T COME.
FEEL FREE TO GET IN TOUCH, VERY
IMPORTANT AGENCY, WE LOOK
FORWARD TO CONTINUE WORKING WITH
AMANDA ON ADMINISTRATION FOR
COMMUNITY LIVING PARTICIPATION.
SO STAY ON BOARD, FEEL FREE TO
GET IN TOUCH.
ALL RIGHT, NOW WE'RE READY FOR
NEXT PRESENTATION.
SHARON, THIS IS YOU.
ADMINISTRATION FOR CHILDREN AND
FAMILIES.
>> YEAH, IT WORKS, OKAY.
ALL RIGHT.
I'M SHARON NEWBURG-RINN, I WORK
FOR CHILDREN'S BUREAU.
I'VE DONE A LOT OF ANALYSIS OF
ALL KINDS OF DATA WE COLLECT ON
FOSTER CARE AND CHILDREN
MALTREATED, ALL OF THAT KIND OF
STUFF.
RIGHT NOW THIS IS THE MAIN FOCUS
OF WHAT I'M DOING.
I HAVE HERE, I DIDN'T HAVE VERY
MANY SLIDES.
IT'S ON THIS ONE SHEET OF PAPER,
BOTH SIDES, WHAT I'VE BEEN DOING
LATELY.
BUT I THINK YOU CAN READ THAT BY
LOOKING AT IT AND SEEING WHAT
WE'VE DONE LATELY.
I WANT TO TELL YOU THE IMPORTANT
STUFF, YOU KNOW?
BECAUSE I THINK IT RELATES TO
WHAT OTHER PEOPLE HAVE BEEN
SAYING TODAY.
AND I JUST GRAB RIGHT ONTO IT
WHEN I HEAR IT.
PEOPLE ARE TALKING ABOUT PEOPLE
BEING AFRAID THAT THEIR CHILDREN
WILL BE TAKEN AWAY.
WELL, TURNS OUT THERE'S A VERY
GOOD REASON FOR THAT.
OVER ONE-THIRD OF THE STATES NOW
HAVE IT WRITTEN INTO THEIR LAWS
THAT IF THE CHILD HAS BEEN
PRENATALLY EXPOSED, GOOD ENOUGH
REASON, CAN YOU TAKE THAT KID
OUT OF THE HOME -- YOU CAN TAKE
THAT KID OUT OF THE HOME, THAT'S
IN OVER ONE-THIRD OF THE STATES.
AND SO THERE IS A GOOD REASON
FOR THEM TO BE WORRIED.
LET'S SEE.
I HAVE ALL THESE SCRIBBLED
NOTES, DOESN'T LOOK AS NEAT AS
THE REST OF THE STUFF I WROTE.
A LOT OF PEOPLE ALSO THINK
THAT -- I'VE TALKED WITH SOCIAL
WORKERS ACROSS THE COUNTRY.
THEY SAY, I DON'T HAVE ANY KIDS,
YOU KNOW, IN MY AGENCY WHO HAVE
THIS PROBLEM, BECAUSE I WOULD
KNOW IF THEY DID.
I'D BE ABLE TO LOOK AT THEM AND
TELL.
NO, YOU CAN'T.
THERE'S NOT THAT MANY THAT YOU
CAN REALLY LOOK AT AND KNOW THAT
THEY ACTUALLY HAVE DAMAGE TO
THEIR DEAR BRAINS BECAUSE OF
THIS.
AND SO, BUT IT'S A BIG PROBLEM
IN THE AREA BECAUSE PEOPLE JUST
DON'T TAKE IT SERIOUSLY.
THEY DON'T THINK THAT IT'S AN
ISSUE.
AND PEDIATRICIAN IRA CHASNOW WAS
LOOKING AT KIDS IN FOSTER CARE
FOR YEARS, COULDN'T FIGURE OUT
WHAT WAS GOING ON, GETTING
VARIOUS SORTS OF MEDICINES,
LET'S SEE, DO THEY HAVE ADHD,
THIS OR THAT, GETTING VARIOUS
KINDS OF DRUGS, YOU KNOW,
RITALIN IF THEY HAVE ADHD OR
ANXIOUS THEY HAVE ANXIETY AND
GIVE THEM SOMETHING ELSE, XANAX
OR SOMETHING LIKE THAT.
AND THEY JUST COULDN'T FIGURE
OUT WHAT WAS GOING ON WITH THEM.
AND IN OVER 80% OF THE CASES
WHERE THESE KIDS WERE REFERRED
TO HIM, THEY HAD NOT BEEN
DIAGNOSED WHEN THEY ENTERED
FOSTER CARE.
THAT'S A LOT.
SO, IT'S A BIG PROBLEM IN THE
FOSTER CARE SYSTEM.
NOT TO HAVE THIS RECOGNIZED.
AND THE OTHER THING ABOUT IT
THAT'S A VERY BIG PROBLEM IN THE
CHILD WELFARE FIELD IS THESE
KIDS ARE KIND OF CHALLENGING FOR
THE PARENTS.
AND PART OF THE PROBLEM IS, THEY
DON'T UNDERSTAND.
AND THEY CAN APPEAR VERY MUCH
LIKE THEY ARE JUST MISBEHAVING.
LIKE, YOU KNOW, EVEN SAY IN THE
HOME, MOM SAYS HANG YOUR JACKET
ON THE COAT RACK WHEN YOU COME
IN THE HOUSE.
AND THEY FORGET IT EVERY DAY.
I MEAN, I HAVE TWO KIDS THAT
DON'T HAVE THAT PROBLEM AND I'VE
SEEN THAT KIND OF THING HAPPEN
MYSELF.
BUT THESE KIDS FORGET THE RULES.
AND ANOTHER THING IS -- THAT
TENDS TO MAKE THE PARENTS ANGRY,
FOSTER PARENTS TOO, BECAUSE THEY
LOOK AT IT AS YOU'RE JUST
DEFYING ME, YOU'RE NOT -- YOU'RE
MISBEHAVING AND REALLY DON'T GET
IT.
SO, THERE ARE A LOT OF THINGS
LIKE THAT THAT LEAD US TO THINK
WE NEED TO DO SOMETHING ELSE,
AND SOME OF THE THINGS I'VE BEEN
WORKING ON ARE TALKING WITH
SOCIAL WORKERS AND THEIR
SUPERVISORS AND PARENTS AND
FOSTER PARENTS ACROSS THE
COUNTRY, AND GETTING THEIR VIEWS
ON WHAT'S GOING ON.
AND WHAT'S IMPORTANT TO THEM.
AND WE KNOW FROM TALKING WITH
SOME FOSTER PARENTS AND NEWLY
ADOPTIVE PARENTS THAT THEY
DIDN'T EVEN KNOW WHAT KIND OF
PROBLEM.
IN FACT, WE HAD SOME THAT SAID
TO US, WELL, YOU KNOW, THEY TOLD
US THEY COULDN'T TELL US THIS
INFORMATION.
IT WAS NOT LEGAL FOR THEM TO
TELL US, TALKED ABOUT HIPAA OR
SOMETHING, BUT HOW THAT THEY
GOING TO TAKE CARE OF THESE
KIDS?
SOME DIDN'T HAVE A CLUE.
THEY WENT ON GOOGLE AND FOUND
OUT IMPORTANT INFORMATION ABOUT
HOW TO DEAL WITH THIS CHILD.
AND IT'S REALLY CRITICAL THAT
THEY KNOW HOW AND I'M SURE THAT
YOU CAN WELL UNDERSTAND IT NOW
AFTER HEARING ALL THE THINGS
YOU'VE HEARD TODAY, IT'S VERY
EASY FOR A PARENT OR FOSTER
PARENT OR ADOPTIVE PARENT TO GET
ANGRY WITH THE KID BECAUSE THE
KID LOOKS LIKE THEY ARE BEING
DEFIANT WHEN THE FACT IS THEY
DON'T UNDERSTAND SOMETHING.
AND YOU CAN'T TELL THEM -- THEY
NEED LIKE A BACK OF TRICKS --
BAG OF TRICKS.
DON'T TELL THIS KID TO GO
UPSTAIRS, BRUSH TEETH, PUT ON
YOUR JACKET AND GO DOWNSTAIRS
AND DON'T FORGET YOUR BOOKS AND
GET IN THE CAR.
THEY ARE GOING TO FORGET
SOMETHING.
AND THE PARENTS NEED TO
UNDERSTAND THAT.
AND IF THEY DO UNDERSTAND THAT,
THEY ARE GOING TO BE LESS LIKELY
TO BE ANGRY.
AND THEN YOU'RE GOING TO HAVE
LESS LIKELIHOOD THEY WILL BE MAL
TREATING THIS KID.
SO THOSE ARE SOME OF THE KINDS
OF THINGS THAT WE'RE WORKING ON.
LET ME JUST ADDRESS, LET'S SEE,
HOW DO I TURN THIS, THIS FIRST
SLIDE?
OKAY, NATURALLY, ALL RIGHT.
AND THIS IS THE ONLY ONE I'M
GOING TO TELL YOU MUCH ABOUT.
THE OTHER ARE BRAGGING ABOUT
WHAT WE'VE DONE LATELY.
BUT I WANT TO TELL YOU THAT WE
KNOW THAT IN FOSTER CARE, I LOOK
AT THE DATA EVERY DAY, AND THERE
ARE MORE CHILDREN OF COLOR WHO
ARE IN FOSTER CARE, EITHER
TRIBAL CHILDREN, AFRICAN
AMERICAN CHILDREN, AND SO FORTH,
WHO ARE IN FOSTER CARE.
AND IT'S OUT OF PROPORTION TO
THEIR NUMBERS IN THE GENERAL
POPULATION.
SOME PEOPLE HAVE TAKEN THIS TO
MEAN THAT WE'RE OVERSURVEILING
THEM.
WELL, MAYBE WE ARE
OVERSURVEILING THEM.
THERE'S SOMETHING GOING ON, AND
IT'S NOT A GOOD THING.
BUT IT ALSO COULD BE OTHER
THINGS.
IT COULD BE MAYBE THEY HAVE
HIGHER NEEDS BECAUSE OF
SOCIOECONOMIC FACTORS AND THINGS
LIKE THAT.
WE DON'T KNOW EXACTLY WHAT'S
GOING ON.
WE DO KNOW THAT IT'S NOT A GOOD
THING TO HAVE MORE CHILDREN OF
COLOR IN FOSTER CARE, NOT BE
ABLE TO GET TO THE BOTTOM OF IT
AND FIGURE OUT WHAT'S GOING ON.
SO, IF WE'RE TRYING TO PREVENT
THEM FROM GOING INTO FOSTER
CARE, THAT'S A BIG ISSUE.
HOW DO YOU DO THAT?
WHAT'S THE SOLUTION?
AND CAN YOU PROVIDE SERVICES IN
THE HOME?
NOW, ONE THING THAT IS GOOD IS
THAT THE CHILDREN'S BUREAU HAS
DECIDED, WELL, THERE'S
LEGISLATION FOR THIS, RATHER
THAN GIVING ALL THE MONEY ONLY
FOR FAMILIES WHO ARE TAKING IN
FOSTER CHILDREN.
YOU CAN ALSO ALLOW STATES TO USE
THAT SAME MONEY, THAT SAME
FUNDING TO DO PREVENTION
SERVICES.
SO, THAT'S A GOOD THING.
OH, YEAH, LAST COMMENT I HAVE
HERE ON THIS PAGE IS THAT THAT
SOUNDS TO A LOT OF CONGRESSMEN
LIKE THEY ARE GOING TO SAVE
MONEY.
NOT PUT THEM IN FOSTER CARE?
GREAT, WE'LL SAVE MONEY.
THAT'S NOT THE INTENT.
THAT'S NOT THE POINT.
WE'RE TRYING TO HELP THESE KIDS
AS MUCH AS WE CAN.
OKAY.
AND THIS JUST TELLS YOU SOME OF
THE STUFF THAT WE'VE BEEN
PUBLISHING LATELY, COLLABORATING
WITH CHILD WELFARE LEAGUE OF
AMERICA, A DOUBLE ISSUE OF THAT.
WE'VE DONE SOME OTHER
PRESENTATIONS.
AND INCLUDING MOST RECENTLY IN
SEATTLE AT THIS CONFERENCE.
AND WE'RE DOING A LOT OF --
WE'RE GETTING TOGETHER MATERIALS
THAT CAN BE USED WITH SOCIAL
WORKERS, TO TELL THEM, HELP THEM
FIGURE OUT WHAT THEY NEED TO DO
TO HELP THESE KIDS.
WE ALSO HAVE A TRIBAL -- WE HAD
THIS BEFORE BUT WE'LL DO IT
AGAIN, WORKING WITH A TRIBE.
AND THEY ARE KIND OF DOING THEIR
OWN THING.
WE HAVE THE SAME SETS OF
RESEARCH QUESTIONS, BUT THEY ARE
DOING IT IN THEIR OWN WAY
BECAUSE WE'RE TRYING TO BE
RESPECTFUL OF THE TRIBE'S
CULTURE AND THEIR SPECIFIC NEEDS
BECAUSE IT COULD BE DIFFERENT.
WE ALSO HAVE SOME WEBINARS
COMING UP IN COLLABORATION WITH
THE CHILD WELFARE LEAGUE OF
AMERICA.
AND IF YOU'RE INTERESTED IN
FINDING OUT MORE ABOUT THOSE OR
WHERE YOU CAN CLICK IN ORDER TO
GET ON THEM, MY NAME IS ON THAT
FIRST SLIDE.
LET'S SEE.
AND MY E-MAIL ADDRESS, AND YOU
CAN JUST ASK ME AND I'LL TELL
YOU HOW TO CONNECT TO THOSE
THREE UPCOMING WEBINARS.
OKAY, THANKS.
>> THANK YOU VERY MUCH.
WE HAVE ONE MORE PRESENTATION
BEFORE WE HAVE DISCUSSION,
PLEASE HAVE YOUR QUESTIONS READY
FOR DISCUSSION TO ALL OUR
MEMBERS.
THANK YOU.
SO NEXT PRESENTATION IS FROM
HEALTH RESOURCES AND SERVICES
ADMINISTRATION.
SONSY FERMIN.
>> HI.
GOOD AFTERNOON.
I'M GLAD TO BE HERE.
THIS IS MY FIRST IN-PERSON
MEETING, ANNUAL MEETING, SO
THANK YOU.
I'M ONE OF THE NEW MEMBERS.
I AM A PROGRAM OFFICER FOR THE
SUPPORTING FETAL ALCOHOL
SPECTRUM DISORDER PROGRAM,
PLEASED TO PROVIDE UPDATES.
MOST OF YOU, WE'RE SHORT ON TIME
BUT I WANT TO TELL YOU A LITTLE
BIT.
I KNOW MOST PEOPLE ARE FAMILIAR,
ESPECIALLY THE PUBLIC, CDC, FDA,
BUT I'D LIKE TO TELL YOU ABOUT
HRSA.
TO START, HRSA WORKS ACROSS
DIVERSE POPULATIONS SERVING
BROAD FROM INFANTS TO ELDERLY,
AND ESPECIALLY FOR PEOPLE
GEOGRAPHICALLY ISOLATED,
ECONOMICALLY OR MEDICALLY
VULNERABLE INDIVIDUALS.
HRSA'S MISSION -- I'M SORRY.
OOPS, OKAY.
LET ME GO OVER HERE.
I WANTED TO LET YOU KNOW FOR A
SECOND, SO WHEN HRSA'S MISSION
IS TO IMPROVE HEALTH OUTCOME,
ADDRESS HEALTH DISPARITY THROUGH
ACCESS TO QUALITY SERVICES AND
SKILLED WORKFORCE AND INNOVATIVE
HIGH-VALUE PROGRAMS.
AND FOR THE SAKE OF TIME I'M
JUST GOING TO SHOW I WORK IN THE
MATERNAL CHILD AND HEALTH
BUREAU, AND THESE SLIDES WILL BE
UP ON THE WEBSITE.
SO JUST GIVING YOU A LITTLE BIT
ABOUT OUR STRATEGIC PLAN AND
SOME OF THE THINGS THAT WE WORK
WITH.
BUT I WANT YOU TO UNDERSTAND
THAT MCHB PROMOTES MENTAL HEALTH
AND WELL BEING FOR MATERNAL AND
CHILD HEALTH ACROSS A LIFESPAN
SUPPORTING PRINCIPLE THERE IS
NO HEALTH WITHOUT MENTAL HEALTH.
LET ME TELL YOU ABOUT MCHB.
AGAIN, IT'S MATERNAL/CHILD
HEALTH BUREAU, TO SUPPORT FETAL
ALCOHOL SPECTRUM DISORDER,
SCREENING AND INTERVENTION
PROGRAM.
OUR AWARDEES IS CALLED SAFEST
FIRST LEARNING COLLABORATIVE,
ADDRESSING THINGS KATHLEEN WAS
TALKING ABOUT.
THIS PROGRAM ADDRESSES PRIMARY
CARE PROVIDERS, EDUCATION
PROGRAM, THAT AIMS TO REDUCE
INCIDENCE OF PRENATAL ALCOHOL
EXPOSURE AND IMPROVE OUTCOMES IN
CHILDREN SUSPECTED OR DIAGNOSED
WITH FASDs THROUGH THE PROJECT
ECHO TRAINING DESIGNED TO REACH
PROVIDERS IN STATES AND
TERRITORIES, TRIBAL
ORGANIZATIONS, RURAL COMMUNITIES
WITH HIGHER RATE OF BINGE
DRINKING, ESPECIALLY IN RURAL
AREAS, AS WE KNOW SOMETIMES VERY
DIFFICULT TO GET SOME SERVICES
IN THAT AREA.
THIS AGREEMENT WAS AWARDED TO
BOSTON MEDICAL CENTER IN
PARTNERSHIP WITH MINNESOTA-BASED
GROUP ALLIANCE, NOW IN FINAL
PROJECT YEAR.
SO THAT GRANT CYCLE WILL BE
ENDING THIS SUMMER.
I WANTED TO SPREAD OUT THE WORD
THERE.
WE ARE CURRENTLY HAVING AN OPEN
NOTICE OF FUNDING OPPORTUNITY,
FOR THE NEXT FIVE-YEAR GRANT
CYCLE.
IT OPENED APRIL 3.
IT WILL BE CLOSED JUNE 21.
IT'S GOING TO BE ONE COOPERATIVE
AGREEMENT, AND WE HAVE ESTIMATED
AMOUNT OF 750,000, IT WILL START
SEPTEMBER 1, ALL THE WAY THROUGH
AUGUST 31, 2029.
THIS ONE LAST WAS FOUR YEARS,
THIS ONE IS FIVE YEARS BECAUSE
IT'S BEEN VERY SUCCESSFUL.
SO, WHAT IS THE PROGRAM GOAL?
IT'S TO IMPROVE ABILITY OF
PRIMARY CARE PROVIDERS WHO SERVE
PREGNANT INDIVIDUALS TO SCREEN
THEIR PATIENTS FOR ALCOHOL USE,
PROVIDE BRIEF INTERVENTION AND
REFER HIGH RISK PREGNANT WOMEN
TO SPECIALTY CARE.
ALSO IT'S A TWO-GOAL PURPOSE,
THE OTHER PART IS ALSO TO
IMPROVE ABILITY OF PROVIDERS
SERVING CHILDREN OR ADOLESCENTS
SUSPECTED OF FASD TO SCREEN FOR
PRENATAL ALCOHOL EXPOSURE AMONG
THOSE SUSPECTED OF FASD AND
MANAGE AND PROVIDE REFERRALS
NECESSARY SERVICES FOR THOSE
INDIVIDUALS IDENTIFIED WITH
FASD.
SO THE SAFEST CHOICE
COLLABORATIVE RECRUITS AND
EDUCATES HEALTH CARE PROVIDERS
TEAMS, SO IT'S PRACTICES.
BECAUSE YOU CAN TEACH ONE PERSON
BUT IF THAT PERSON LEAVES WHAT
HAPPENS?
WE AIM AT TEACHING PRACTICES.
COMMUNITY HEALTH CENTERS,
PRACTICES AGAIN IN RURAL AND
URBAN AND TRIBAL AREAS.
PARTICIPATING IN INTRODUCTORY
WEBINAR FOLLOWED BY TEN
SESSIONS, ECHO AIMS TO TEACH
HEALTH CARE PROVIDERS AGAIN HOW
TO SCREEN AND COUNSEL PATIENTS
ABOUT RISK OF ALCOHOL USE DURING
PREGNANCY AND FOR PEDIATRICS
ECHO SESSIONS AGAIN IT AIMS TO
IMPROVE FASD OUTCOME BY TRAINING
HEALTH CARE TEAMS HOW TO
IDENTIFY AND CARE FOR CHILDREN
AND ADOLESCENTS SUSPECTED WITH
FASD.
RIGHT NOW WE HAVE THREE COHORTS,
WE'RE AT END OF THE LAST ONE.
AND I WANT TO SHOW SOME GREAT
RESULTS.
THIS WAS COHORT 1, A 10-SESSION,
BEGAN IN JUNE 2021, ENDED APRIL
2022.
AND OVER HERE AS YOU CAN SEE
THERE'S A MAP OF ALL THE
PARTICIPANTS, ALL THE CLINICS
THAT PARTICIPATED.
COHORT 1 ENROLLED 15 COMMUNITY
HEALTH CENTERS WHICH INCLUDED 10
PRENATAL, 11 PEDIATRIC PRACTICES
FROM SEVEN DAYS, FIVE OF THE 22
PRACTICES WERE TRIBAL HEALTH
CENTERS, NINE IN RURAL AREAS.
SEVERAL OTHERS THAT WE WERE NOT
IDENTIFIED AS TRIBAL, HOWEVER
THEY DO HAVE WITHIN THEIR
POPULATION THEY SERVE TRIBAL
COMMUNITY.
I WANT TO SHOW THE COHORT NUMBER
2, WHICH STARTED MAY 22, AND
APRIL 2023.
COHORT 2 ENROLLED 18 COMMUNITY
HEALTH CENTERS INCLUDING 12
PRENATAL PRACTICES, 12 PEDIATRIC
PRACTICES, 7 STATES, 6 OF THE
222 TRIBAL -- TRIBAL, 7 RURAL,
AIMED AT CERTAIN AREA, MIDWEST,
THE PROGRAM HAS BEEN PROGRESSING
IT KEEPS EXPANDING BECAUSE AS WE
SEE SOME OF THESE NEEDS DON'T
JUST STAY IN ONE GEOGRAPHICAL
AREA.
SO BUT I WANTED TO TELL YOU THAT
ON BOTH COHORT 1 AND 2,
INITIALLY SAFEST CHOICE, WHAT
THEY DID WAS OVER 10-MONTH
PERIOD MONTHLY SESSIONS, THE
PEDIATRIC AND PRENATAL.
BUT COHORT 3, I WANT TO POINT
THIS OUT, THEY DID IT A LITTLE
BIT DIFFERENT.
IN ORDER TO INCREASE ENGAGEMENT
THEY DECIDED LET'S DO THIS.
THEY STARTED WITH THE
PEDIATRICS, AND THEN TO THE
PRENATAL, INSTEAD OF DOING IT IN
10 MONTHS THEY NOW HAVE IT IN 5
MONTHS AND DO IT BIMONTHLY,
FOUND ENGAGEMENT RATE OF THOSE
PROVIDERS THAT COMMIT TO IT
FINISH IT BECAUSE, YOU KNOW, A
LOT HAPPENS DURING A YEAR.
YOU HAVE ATTRITION, RETIREMENT,
PEOPLE MOVE, THINGS HAPPEN.
SO, THE ENGAGEMENT RATE HAS
INCREASED SIGNIFICANTLY.
CONCENTRATED BIMONTHLY AND MOVE
TO THE OTHER VERSUS THE WHOLE
10-YEAR SPAN.
THEY STILL GET WITHIN THE SAME
AMOUNT OF SESSIONS AND SAME
AMOUNT OF TEACHING BUT TRYING
SOMETHING ON THE THIRD COHORT.
FOR THIS THIRD COHORTS, AND WITH
PRENATAL WHICH STARTED FEBRUARY
AND WILL BE ENDING JUNE OF 2024.
SO FAR IN THE PEDIATRICS, WELL
PEDIATRICS 15 COMMUNITY HEALTH
SYSTEMS, 13 CLINICS, 13 STATES.
THIS ONE INCLUDED 2 SPECIAL
PARTICIPANTS, THEY CALLED THEM
AUDITORS, AND THE REASON IS FOR
THEM TO ENGAGE IN PRACTICE, THEY
HAVE TO -- THE HEALTH CENTER HAS
TO COMMIT.
THERE'S REALLY A CONTRACT WHICH
SAYS THIS IS WHAT WE EXPECT OF
YOU.
SO THE AUDITORS WANT TO BE ABLE
TO COME BUT THEY DON'T HAVE AT
LEAST THREE PROVIDERS.
THAT'S ANOTHER THING.
IN ORDER TO BE -- PRACTICE, THEY
WANT TO ENROLL AT LEAST THREE IN
EACH SESSION.
THEY STILL GET ALL THE TRAINING
AND EVERYTHING BUT THEY ARE JUST
CONSIDERED AUDITORS.
SO, FOR THE PRENATAL GROUP NOT
ON THE MAP, THEY HAVE ENROLLED
13 HEALTH SYSTEMS INCLUDING 10
PRACTICES, THREE AUDITORS FROM
NINE STATES AND AGAIN CURRENTLY
GOING ON RIGHT NOW.
I WANTED TO GIVE YOU THESE ARE A
SIGN OF THE CORE MODULES.
AS YOU CAN SEE, THE FIRST FIVE
THEY ARE SIMILAR.
ONCE THEY GET INTO -- SEPARATE
BUT EVEN THOSE THAT ARE SIMILAR
WITHIN THE FIRST FIVE SESSIONS,
THEY ARE STILL EACH GEARED TO
THE POPULATION THEY ARE SERVING.
LIKE THE FASD ESSENTIAL SCIENCES
IS THE SAME BUT HAS DATES TO
PROVIDERS THEY ARE WORKING WITH.
ADDITIONAL EDUCATIONAL CONTENT,
ASIDE FROM THE SESSIONS, INCLUDE
DEMONSTRATION VIDEOS, I'VE SEEN
A LOT OF THOSE.
PATIENT CONVERSATIONS, INTERVIEW
WITH INDIVIDUALS WITH LIVED
EXPERIENCE.
SMALL GROUPS, SKILL PRACTICES,
AND THE FACULTY TEACH, IT'S VERY
DIVERSE.
M.D.s, RNS, SOCIAL WORKERS,
MIDWIVES, NURSE PRACTITIONERS,
SO THEIR AIM IS TO GET EVERYBODY
INVOLVED WITHIN THE CARE SYSTEM
OF THE PRENATAL PERSON OR THE
CHILD.
AND ALSO ONE THING THAT I WOULD
LIKE TO SAY IS THAT THEY HAVE AN
ADVISORY BOARD, AND THE ADVISORY
BOARD HELPS GUIDE SOME OF THE
TRAININGS.
IN THE ADVISORY BOARD ONE OF THE
REQUIREMENTS IS ASIDE PATIENTS,
RESEARCHERS, ADVOCATES BUT WE
REQUIRE INDIVIDUALS WITH LIVED
EXPERIENCE.
AND THEY MEET ANNUALLY IN ORDER
TO ADVISE AND HELP WITH THE
RECRUITMENT BUT ALSO HELP WITH
THE TWEAKING OF SOME OF THE
OTHER PROGRAMS AND SOME T.A.s.
I'M NOT GOING TO READ THE WHOLE
THING.
WE'VE TALKED ABOUT THIS.
SOME OF THIS IS THE SAME THING
THAT IN THE FIELD YOU'RE SEEING.
THIS IS SOME THEMES THAT CAME
OUT, FEAR, GUILT, SHAME, SOME
PROVIDERS ARE ALSO AFRAID TO
APPROACH A PRENATAL WOMAN, IN
ORDER NOT TO -- SOME OF THE --
I'VE BEEN IN SOME OF THE
COURSES.
AND I THINK THEIR BIGGEST FEAR
HOW TO ENGAGE PREGNANT
INDIVIDUAL WITHOUT BEING
PATRONIZING, PATRIOTIC, THEY
WANT TO SUPPORT THEM WITHOUT
BEING ABLE TO SHAME THEM.
SO THAT SEEMS TO BE LIKE THE
HARDEST THING FOR THEM TO DO,
JUST TO GET THEM IN THERE.
SO, OKAY.
LET ME JUST SEE.
I WANT TO TELL YOU, SO ASIDE
FROM THE CLASSES THEY ALSO HAVE
T.A.
HERE IS SOME TECHNICAL
ASSISTANCE THEY PROVIDE, NOT
ONLY TO PROVIDERS WHO COME IN
BUT THEY WILL GO TO THE CLINICS
WHERE THE PROVIDERS ARE COMING
FROM AND HELP PROVIDE TRAINING
AND TECHNICAL ASSISTANCE.
A LITTLE BIT ABOUT THE PROGRAM
AND WHAT THEY DO, THE PROGRAM
EVALUATION EMPLOYS A MIXED
METHOD DESIGN TO ACCESS THE
PROGRAMS IMPLEMENTATION AND
OUTCOMES ACROSS THREE COHORTS OF
COMMUNITIES.
EVALUATORS UTILIZE QUALITATIVE
AND QUANTITATIVE DATA STRATEGIES
INCLUDING INTERVIEWS, FOCUS
GROUPS, PROGRAM OBSERVATIONS,
AND LET ME GIVE YOU SOME OF
THAT.
SOME FUN PARTS.
SO HERE'S THE GOOD PART.
THIS IS SO FAR THEY HAVE DONE
EVALUATION ON COHORT 1 AND
COHORT 2.
AND I WANT TO TELL YOU NEXT TWO
SLIDES SHOW RESULTS, THIS SLIDE
SHOWS SURVEY RESULTS FOR COHORT
1 AND 2, HIGHLIGHTING POSITIVE
IMPACT FOR PRENATAL AND
PEDIATRIC CLINICS AND BOTH
EXHIBIT HIGH RATE OF
PARTICIPATION RATE WITH
ATTENDEES ENGAGING AT LEAST 7
OUT OF 10 SESSIONS, AND
PARTICIPANTS UNANIMOUSLY AGREE
THE PROGRAM SIGNIFICANTLY
INCREASED THEIR KNOWLEDGE ABOUT
FASD, BOTH IN PRENATAL AND
PEDIATRIC SETTINGS.
SELF-EFFICACY AND PRACTICE
CHANGE, ONE OF THE THINGS THEY
WERE -- WE REQUIRE THEM TO
MEASURE.
BOTH HAVE NOTABLE OUTCOME THAT
THEY OBSERVED BOTH COHORTSN
PRENATAL COHORT 1 AND 2 REPORTED
SUBSTANTIAL INCREASE IN
CONFIDENCE IN THE SCREENING FOR
ALCOHOL USE, IN PEDIATRIC
SETTING, SO SIGNIFICANT
IMPROVEMENT AS WELL.
PARTICIPANTS IN BOTH COHORTS
AFFIRMED INCREASE THE
UTILIZATION OF APPROPRIATE
METHODS FOR SCREENING,
INTERVENING, SHOWCASING TANGIBLE
PRACTICE CHANGE, WE WANT THEM
WHO LEARN, HOW ARE YOU USING
THIS, PRE-POST, MID-POST, AND
AFTER SIX MONTHS.
I KNOW WE'RE RUNNING OUT.
I WANT TO PUT A PLUG HERE FOR
THE NATIONAL MATERNAL MENTAL
HEALTH HOTLINE.
IT IS OPEN 24/7.
THIS SUPPORTS NOT ONLY PREGNANT
INDIVIDUALS BUT FAMILY.
AND THEY PROVIDE MENTAL HEALTH
AND RESOURCES FOR WOMEN AND
PREGNANT PEOPLE WHO MIGHT NEED
THAT EXTRA SUPPORT DURING AND
AFTER PREGNANCY.
AND THANK YOU SO MUCH.
>> THANK YOU VERY MUCH.
WE HAVE NOW TIME FOR QUESTIONS
AND COMMENTS.
I KNOW WE HAVE SOME QUESTIONS
FROM VIDEOCAST.
WE CAN BEGIN WITH THAT.
>> WE'VE GOT A COMMENT.
AND THEN TWO QUESTIONS THAT CAME
IN OVER THE LUNCH BREAK THAT I
THINK WE CAN PERTAIN TO ALL THE
MEMBERS, SO WE CAN MENTION
THOSE.
SO THERE WAS A COMMENT BY
MADONNA MOONEY, THAT WANTED TO
LET A PERSON KNOW MAINE HAS
GREATLY BENEFITED FROM SAFEST
CHOICE PROGRAM, SO THANK YOU,
HRSA.
TWO COMMENTS THAT CAME IN OVER
LUNCH.
THEY ARE LONG BUT I'LL SEE IF I
CAN SUMMARIZE THEM.
BASICALLY THEY WERE QUESTIONS AS
TO WHETHER THERE WERE EFFORTS
UNDERWAY TO COMPILE IN A SINGLE
LOCATION ALL FASD-RELEVANT DATA.
AND THIS IS DATA FROM PREVALENCE
TO SAMHSA, NISDA, TREATMENT
OUTCOMES, MEDICARE, DIAGNOSTIC
CODES, MOSTLY EVERYTHING UNDER
THE SUN, PRAM'S DATA, TO IMPROVE
DOCUMENTATION OF WHAT THE
FEDERAL GOVERNMENT IS DOING IN
THE AREA OF FASD.
AND COULD ALSO HELP WITH
EMPHASIZING IMPORTANCE OF THE
ISSUE TO LEGISLATURE,
POLITICIANS, AND THE LIKE.
DOES ANYONE WANT TO TRY TO
TACKLE THAT?
>> I'LL TAKE A FIRST CRACK.
I THINK IT'S A GREAT SUGGESTION.
I THINK WE'LL HAVE TO CONSIDER
HOW WE CAN DO THAT.
CERTAINLY, THE PERSON WHO MADE
THAT COMMENT IS ABSOLUTELY
CORRECT.
THERE'S A LOT OF DATA OUT THERE
IN MULTIPLE SOURCES FROM
MULTIPLE AGENCIES AND ALL.
AND PULLING THAT TOGETHER IN A
SINGLE SITE WOULD BE VALUABLE,
MAYBE SOMETHING THAT THIS
COMMITTEE COULD CONSIDER.
YOU KNOW, GIVEN WHAT RESOURCES
ARE AVAILABLE TO DO THAT, BUT
WE'LL TAKE THAT UNDER
CONSIDERATION.
THANK YOU FOR THE COMMENT.
>> I WILL ADD THAT I THINK FIRST
STEP WOULD BE OUR AGENCY UPDATES
THAT WE PROVIDE, AS PART OF THIS
COMMITTEE AND THOSE AGENCY
UPDATES ARE AT LEAST IN ONE
LOCATION ON THE ICCFASD WEBSITE.
IT DOESN'T GO BEYOND THE
ACTIVITIES THAT WE'RE INVOLVED
IN BUT THAT COULD BE A GOOD
START.
>> ALL RIGHT.
THANK YOU.
THANK YOU, BILL.
QUESTIONS FROM MEMBERS?
IF ANYBODY ON ZOOM WANTS TO ASK
QUESTIONS PLEASE RAISE YOUR
HAND.
OKAY, GO AHEAD.
>> A QUESTION FOR SONSY.
THAT WAS A FANTASTIC
PRESENTATION, I LOOK FORWARD TO
THE DATA THAT COMES OUT AS TO
THE UPTAKE AND ALL.
TWO QUESTIONS.
WERE THE PEOPLE WHO CAME FROM
DIFFERENT CLINICS VOLUNTEERS AND
THEREFORE ALREADY INTERESTED OR
VOLUNTOLD TO DO IT?
AND THEN IS THERE ANY DATA
COLLECTION TO SHOW WHETHER THEY
HAVE SERVED AS AMBASSADORS TO
THEIR CLINICS AND THEREFORE IT'S
TAKEN UP MORE BROADLY THAN JUST
THE INITIAL PARTICIPANTS?
>> OKAY, TWO THINGS.
FOR THE FIRST ONE, NO.
NO ONE IS VOLUNTOLD.
IN FACT, THIS PROGRAM INITIALLY
WAS A THREE-YEAR PROGRAM.
BECAUSE IT WAS THE FIRST TIME WE
WERE DOING IT.
AND WE FOUND OUT THEY WERE
HAVING A WAITLIST.
SO WE WERE ABLE TO FUND AN
EXTENSION TO MAKE IT A FOUR-YEAR
PROGRAM UNTIL WE GET FUNDING TO
START THE FIFTH YEAR.
AND THE INCENTIVE IS NOT ONLY TO
LEARN AND TO HAVE THAT CHANGE
BACK, BECAUSE A LOT OF
PROVIDERS, ALMOST LIKE MYSELF, I
WENT THROUGH -- I'M A LICENSED
CLINICAL SOCIAL WORKERS, I WAS
TELLING KATHLEEN THAT IT'S -- I
DON'T REMEMBER ANYTHING ABOUT
FASD.
THE ONLY THING I REMEMBER ON
ALCOHOL WAS THE PHYSIOLOGIC, SIR
OWES CIRRHOSIS OF THE LIVER,
EVEN IN MENTAL HEALTH THAT WAS
NOT ADDRESSED.
I GRADUATED MANY MOONS AGO SO
I'M SURE IT HAS CHANGED.
NO, THEY ARE NOT VOLUMEN TOLD.
-- VOLUNTOLD.
THEY WANT TO.
THEY GET CEUS AND OTHER THINGS
AS WELL.
WE HAVE FOUND THAT AS -- SOME
COHORT 1, SOME FROM SOME CLINICS
ARE COMING BACK THAT HEARD ABOUT
IT AND WERE NOT EITHER WORKING
AT THAT TIME, COULDN'T MAKE THAT
ONE-YEAR COMMITMENT, AND ARE
COMING BACK.
SO WE FIND IT'S NOT JUST WHAT
THEY LEARN IN THE CLASSES, IN
THE SESSIONS THEMSELVES.
BECAUSE WE DO DO A POST, SIX
MONTHS AFTER, HOPEFULLY WE'LL DO
MORE.
SO I THINK IT'S SOMETHING THAT
PEOPLE WANT TO KNOW ABOUT.
>> THANK YOU.
WE DO HAVE QUESTIONS ON
VIDEOCAST.
I CAN SEE FIRST DR. MEGHAN
O'NEILL PLEASE GO AHEAD.
>> I WAS ALSO WONDERING IF
THERE'S ANY EFFORTS TO TARGET
TRAINEES SPECIFICALLY, IN
PEDIATRIC PROGRAMS, I'M A
PHYSICIAN TRAINED IN
NEURODEVELOPMENTAL DISABILITIES,
AND AS A MEDICAL SCHOOL LEVEL
THERE'S NO UNIFORM REQUIREMENT
FOR ANY KIND OF DISABILITY
CURRICULUM IN MEDICAL SCHOOLS.
AND FOR THE LAST FIVE YEARS AT
MY CHILDREN'S HOSPITAL I RAN THE
DEVELOPMENTAL PEDIATRICS
ROTATION, AND I THINK THERE'S NO
STANDARDIZATION THERE, AND
EXPERIENCES FOR MEDICAL STUDENTS
AND PEDIATRICIANS ARE REALLY
VARIABLE ACROSS THE BOARD,
WONDERING IF THERE'S EFFORT TO
STUDY AND ECHO CURRICULUM LIKE
THIS AND EXTEND IT SPECIFICALLY
TO TRAINEES OR ANY WAY TO
INTERJECT CURRICULUMS DEVELOPED
INTO THE INFRASTRUCTURE OF
MEDICAL TRAINING BECAUSE, YOU
KNOW, THIS HAS BEEN MENTIONED
MANY TIMES BUT I THINK THERE'S
JUST MANY PHYSICIANS WHO DON'T
HAVE A CLUE HOW TO APPROACH
FASD.
>> THANK YOU.
THANK YOU, GREAT TO HEAR
QUESTIONS AND COMMENTS FROM NEW
MEMBERS.
ANYBODY WANTS TO ANSWER?
I THINK IT MAY BE CDC MEMBERS
ONLINE, DO WE HAVE ANYBODY ON
ZOOM WHO WOULD LIKE TO ANSWER
DR. O'NEILL'S QUESTION?
CDC HAS DONE SOME WORK TO
IMPLEMENT IN GROUP QUESTIONS ON
FASD IN CURRICULUM.
>> CAN I FOLLOW UP?
WHAT KIND OF MODULE, WHAT KIND
OF TIME COULD BE DEVOTED TO
THAT?
FOR EXAMPLEN MED SCHOOL, BECAUSE
NIAAA IS INTERESTED IN
CURRICULUM AROUND ALCOHOL MORE
GENERALLY AND, YOU KNOW, 30
MINUTES IS MAYBE ALL YOU GET IN
THE COURSE OF THE WHOLE FOUR
YEARS THAT YOU COULD DEVOTE TO
ALCOHOL.
SO WHAT IS DOABLE?
>> YEAH, I THINK THAT'S HARD.
I DON'T FULLY UNDERSTAND IT
EITHER.
I THINK EACH MEDICAL SCHOOL
THERE'S A LOT OF JOCKEYING
BETWEEN GROUPS TO PUT THEIR
TOPICS TO THE TOP OF THE TOP OF
MIND.
I THINK WHAT PROBABLY HAS TO
HAPPEN IS SOMETHING AT POLICY
LEVEL WHICH MANDATES DISABILITY
CURRICULUM FOR A CERTAIN AMOUNT
OF TIME DURING MEDICAL SCHOOL
THAT'S DEDICATED TO THAT.
I THINK OTHERWISE IT'S A VERY
MEDICAL SCHOOL-SPECIFIC THING.
I'M AT NORTHWESTERN, WAS AT
NORTHWESTERN, STAYING THERE AS
ADJUNCT PROFESSOR BUT I THINK A
LOT TENDS TO BE LED BY STUDENTS,
SO AT NORTHWESTERN THERE'S A
PRETTY ACTIVE STUDENT GROUP
INTERESTS IN PROMOTING
DISABILITY EDUCATION SO I CAN
GET -- IT TENDS TO START WITH
THEM BUT, AGAIN, THAT'S REALLY
VARIABLE.
SO I THINK IT'S HARD TO KNOW
PLACE TO PLACE.
IN PEDIATRIC RESIDENCY THERE'S
ONE MONTH THAT NEEDS TO BE
DEVOTED TO DEVELOPMENT AND
LEARNING ABOUT CHILD BEHAVIOR
AND DEVELOPMENT.
BUT, AGAIN, THAT'S PRETTY
VARIABLE.
THERE'S NOT A STANDARDIZED
CURRICULUM THAT COMES WITH THAT.
SO, I DON'T KNOW IF THAT ANSWERS
YOUR QUESTION BUT I THINK THERE
IS NO STANDARD AMOUNT OF TIME
FROM WHAT I'VE SEEN.
>> WOULD YOU LIKE TO COMMENT?
>> MARY-KATE WEBER, CENTERS FOR
DISEASE CONTROL, AND WE'VE
FUNDED AMERICAN ACADEMY OF
PEDIATRICS TO EXPLORE HOW BEST
TO REACH PEDIATRIC PROVIDERS,
MAINLY IN PRIMARY CARE.
HOWEVER, WE'VE DONE SOME WORK
WITH RESIDENT TRAINING.
WE'VE HAD A RESIDENT TRAINING
PROGRAM WHERE PRECEPTORS ARE
TRAINED AND THEN WORK WITH A
GROUP OF STUDENTS TO LEARN MORE
ABOUT FETAL ALCOHOL SPECTRUM
DISORDERS AND HAVE DONE THAT FOR
A NUMBER OF YEARS, THAT ROUND OF
WORK HAS SINCE ENDED.
BUT WE DEFINITELY HAVE TRIED TO
THINK OF UNIQUE WAYS TO REACH
FOLKS EARLIER ON IN THEIR
CAREERS THROUGH THOSE EFFORTS.
WE'VE ALSO HAD AN ECHO PROGRAM
AS WELL.
A LITTLE BIT SMALLER SCALE THAN
HRSA'S, BUT DEFINITELY ANOTHER
WAY TO REACH PEDIATRICIANS WHO
ARE ACTUALLY IN PRACTICE.
>> THANK YOU FOR YOUR QUESTION.
ANOTHER PIECE IS LOOKING BACK
OVER THE YEARS, WE HAD THE FIRST
MEDICAL SCHOOL CURRICULUM,
ACTUALLY I USED TO TEACH A
COURSE AT NORTHWESTERN, AND AT
GEORGETOWN, SO OVER THE YEARS
AND CDC WE ACTUALLY WROTE
LANGUAGE AND GOT FUNDING, YOU
KNOW, FOR CDC TO EDUCATE MEDICAL
AND ALLIED PROFESSIONALS AND
STUDENTS, WORTHWHILE EFFORTS.
I PARTICIPATED WITH AAP, WITH
THEIR ECHO, AN INCREDIBLE MODEL.
BUT THING I WANT TO SAY IS THAT
JUST SITTING A T THESE TABLES
FOR MANY YEARS UNLESS THERE'S
QUESTIONS ON THE EXAMS, YOU
KNOW, AND A REAL PUSH TO GET
THIS EDUCATION, NOT JUST FASD,
ALSO ON ADDICTION, IT JUST --
YOU DO THESE PIECEMEAL THINGS,
GREAT EFFORTS, GREAT EFFORTS, SO
I'M NOT TRYING TO TAKE ANYTHING
AWAY, BUT WE'VE NEVER BEEN ABLE
TO DO THE FULL NATIONAL PUSH TO
ENSURE THAT ALL MEDICAL AND
ALLIED HEALTH STUDENTS AND
PROFESSIONALS ARE LEARNING THIS
BUT I WILL SAY NIAAA, HRSA,
SAMHSA, CDC HAS THE COURSES,
COURSES DONE, YOU KNOW, THERE'S
CMEs AVAILABLE.
I GUESS THE FRUSTRATION AS
PERSON WITH LIVED EXPERIENCE IS
THE PUSH TO GET PEOPLE TO USE
THEM AND I DON'T THINK IT'S
GOING TO HAPPEN UNLESS THERE'S
SOME SORT OF OUTCOME, MEASURABLE
OUTCOME.
SO JUST WANTED TO MENTION THAT.
BUT THANK YOU.
I LOVED YOUR QUESTION.
>> THANK YOU.
WE HAVE SEVERAL QUESTIONS, I'M
HAPPY TO HAVE DISCUSSION.
I WILL GO WITH KEN, CHRISTINE.
>> I APPRECIATE THIS
CONVERSATION AS WELL.
I'M A PEDIATRICIAN AS WELL.
AND I MUST TELL YOU, I WOULD
BRING UP A RATHER CONTROVERSIAL
IDEA HERE.
I AS A PEDIATRICIAN THINK THAT
WE HAVE FAILED MISERABLY, AS FAR
AS TRYING TO GET PHYSICIANS, IN
PARTICULAR PEDIATRICIANS
INVOLVED IN THIS DISORDER.
AND SO I WOULD -- I AM PUSHING
AT THIS POINT TO BRING IN OTHER
PEOPLE, LIKE SOCIAL WORKERS, AND
PUBLIC HEALTH WORKERS, AND
PEOPLE THAT CARE ABOUT THIS IS
DISORDER.
I DON'T THINK, AND THIS IS WAY
OUT, A COMMENT BY ME, I DON'T
THINK WE CARE, TALKING ABOUT
PEDIATRICIANS NOW, I DON'T THINK
WE CARE ABOUT THIS DISORDER.
I'M MOVING AWAY FROM THE MEDICAL
PROFESSION AS FAR AS THIS IS
CONCERNED TO BRING IN PEOPLE IN
PUBLIC HEALTH AND PEOPLE WHO ARE
REALLY COMMITTED TO THIS
DISORDER.
>> THANK YOU.
I THINK IT'S QUITE SAD FACT.
I'M NOT VERY SAD PERSON BUT I
THINK IT'S SAD FACT, LIKE AFTER
30 YEARS WE UNDERSTAND THAT
PEDIATRICIANS, IT'S VERY HARD TO
GET THEM ON BOARD AND KEN JONES
MOVES TO OTHER DISCIPLINES, MY
CALL IS FOR PEDIATRICIANS,
POLLS, HOW TO GET THIS TO
PEDIATRIC FIELD BECAUSE WE DON'T
WANT TO MISS IT.
WE NEED TO FIND A WAY HOW TO DO
IT.
ALL RIGHT.
AND NEXT WE HAVE CHRISTINA, YOUR
QUESTION?
>> A QUESTION AND COMMENT.
SONSY, GREAT TO HEAR ABOUT THE
WORK YOU'RE DOING THROUGH THE
PROJECT AND I DO REMEMBER THAT
WE HAD -- ASPE HAD A MEETING A
FEW YEARS AGO WHERE WE TALKED A
LOT ABOUT MESSAGING, TO
PATIENTS, AND THE FACT THAT A
LOT OF IT IS AROUND THE NEGATIVE
OUTCOMES, HOW IT'S GOING TO HURT
YOUR BABY RATHER THAN POSITIVE
MESSAGES AND THE PROVIDERS NEED
TO TALK IN A POSITIVE WAY.
SO AT THAT TIME SO AT THAT TIME
DAWN WAS AT THE MEETING, DAWN
FROM HRSA, I KNOW SHE'S INVOLVED
IN INFORMATION, HAPPY TO SEE
THAT DEVELOP.
I WANTED TO ASK YOU ABOUT THE
ISSUES AROUND CHILD PROTECTIVE
SERVICES AND FEAR WOMEN HAVE
ACCESSING CARE.
I FEEL LIKE STATES MADE STRIDES,
PUBLISHED RESOURCES AND
GUIDANCE, DIFFERENCE BETWEEN CPS
NOTIFICATION VERSUS REPORTING,
AND THAT STATES LIKE MINNESOTA
WHERE IF THE WOMAN STAYS IN
TREATMENT THEY DO NOT, YOU KNOW,
REMOVE CHILDREN OR START FULL
REPORTING BUT I JUST WAS CURIOUS
IF YOU HEAR ABOUT THAT FROM THE
PROVIDERS AND, YOU KNOW, THE
DIFFERENCES BETWEEN STATES IN
TERMS OF THAT.
>> ALL RIGHT.
SO, THANK YOU.
TWO PART ON THAT.
FOR THE FIRST ONE, HOW THEY ARE
REFRAMING SOME OF THIS.
FOR INSTANCE SOME OF THE -- I'VE
SAID IN THESE SESSIONS, TALKING
ABOUT FIRST OF ALL NORMALIZING
OF ASKING EVERYBODY, NOT JUST
THOSE WHO YOU THINK MIGHT BE
DRINKING OR, YOU KNOW, SO
NORMALIZE THE QUESTIONNAIRE
ACROSS BOTH PEDIATRICS AND
PRENATAL, SOME OF THE COMMUNITY
HEALTH CENTERS THAT HAVE
PARTICIPATED, THAT HAVE
ACTUALLY -- THIS IS WHAT THEY
DECIDED TO DO.
NOW, THE ISSUE, AND THIS HAS
COME ACROSS A LOT, HOW DO YOU
BUILD RELATIONSHIP THAT PATIENT
RELATIONSHIP OF TRUST AND OH BY
THE WAY WE'RE IN A STATE THAT
THE MINUTE THE BABY IS BORN, YOU
KNOW, WE'RE CALLING CPS, SO SOME
STATES HAVE DONE, SOME PROVIDERS
SAID THEY DO, IS THEY DON'T WANT
TO SURPRISE THE PATIENT.
SO THEY SAY THAT AS PART OF THE
CARE AFTER THE CHILD COMES, IS
THAT THERE WILL BE SOME OTHER
SERVICES IN ADDITION TO SOME
PROTECTIVE SERVICES COMING IN.
IT'S NOT -- IT'S GIVING SOME OF
THE MANDATORY NEWS BUT ALSO AS
PART OF THE WHOLE CARE PLAN
AFTERWARDS.
BUT THAT IS A CHALLENGE.
THAT'S ONE OF THE BIGGEST
CHALLENGES THAT PROVIDERS SAY.
HOW I DO BUILD THIS TRUST?
AT THE END SAY THIS IS WHAT'S
GOING TO HAPPEN, THEY ARE
INFORMING UP FRONT.
THIS IS HOW IT WORKS, WHAT WE'RE
GOING TO DO, PART OF THE AFTER
CARE, WE'LL BE THERE WITH YOU AS
WELL, MOTT - NOT JUST THEM.
UNTIL WE HAVE NATIONAL POLICY OR
NATIONAL LOU HOW -- LAW HOW TO
PROTECT IN UTERO AND AFTERWARDS
TO PROVIDE SERVICES, NOW IT'S
NOTE JUST PRENATAL PATIENT, NOW
IT'S FAMILY, IF ANY OF YOU WHO
ARE WISER THAN I KNOW HOW WE CAN
ADJUST THAT, HOW WE CAN WORK ON
THAT, THAT WOULD BE GREAT.
STILL MAINTAINING CHALLENGES,
THEY JUST FIND WAYS TO WORK
AROUND IT DEPENDING ON THE
STATE.
>> I WANT TO SAY ONE THING TOO,
YOU MADE ME THINK HERE.
A LOT OF KIDS IN FOSTER CARE ARE
IN FOSTER CARE NOT BECAUSE
SOMEBODY'S BEATING THEM.
IT'S BECAUSE OF WHAT THEY
CLASSIFY AS NEGLECT THAT.
COULD EASILY BE A WOMAN ON THE
STREET WITH HER TWO CHILDREN,
SLEEPING BEHIND THE DUMPSTER, OR
MAYBE IT'S NOT QUITE THAT BAD
BUT THEY ARE NOT IN A VERY GOOD
SITUATION.
SO THE AGENCY DOESN'T KNOW WHAT
THEY SHOULD DO.
WHAT SHOULD THEY DO WITH THESE
KIDS?
AND/OR MAYBE THEY ARE IN THE
HOME BUT IT'S A CRUMMY HOME, HOE
DON'T HAVE ENOUGH FOOD.
AGENCY DOESN'T KNOW WHAT TO DO
SO THERE'S A REAL NEED TO HAVE
COLLABORATION WITH OTHER
AGENCIES IN ORDER TO PROVIDE
WHAT THESE FAMILIES NEED AND IF
THEY HAD WHAT THEY NEEDED THEY
WOULDN'T BE GOING INTO FOSTER
CARE.
>> THANK YOU.
I THINK WE DO HEAR DIFFICULTS TO
ENGAGE PEDIATRICIANS BUT ON THE
OTHER HAND CAN HEAR SIGNIFICANT
CONCERN ABOUT LAWS AND REPORTING
LAW WHICH CAN BE BARRIER AND CAN
BE REASON WHY PEDIATRICIANS NOT
REALLY WILLING TO BE ENGAGED AS
MUCH.
I KNOW THAT CJ HAS BEEN WAITING
PATIENTLY WITH YOUR QUESTION.
THIS IS LAST QUESTION BEFORE WE
GO TO NEXT PRESENTATIONS BUT WE
WILL HAVE ANOTHER DISCUSSION
SESSION.
SO CJ, THIS IS YOUR TIME.
>> ACTUALLY MY QUESTION WAS
ANSWERED.
WHY BOTHER COMING FORWARD WHEN
THEY ARE JUST GOING TO TAKE BABY
AWAY.
VERY FEW PEOPLE NEED TO HAVE
BABY TAKEN AWAY FOR DRINKING.
I THINK ALSO THAT A LOT OF
COMMENTS WERE MADE ABOUT
PREVENTION AND PRENATAL CARE.
BUT BABIES GO TO CHILDREN, TO
TEENS, WHO GROW INTO ADULT.
THE OTHER THING I WAS HEARING
WAS JUST THE AMOUNT OF, SORRY,
AMOUNT OF LACK OF SERVICES THERE
ARE IN SCHOOLS, HOW PEOPLE END
UP IN JAIL, AND IT'S A TERRIBLE
END TO A STORY IN THE MIDDLE OF
A LIFE.
I HAD A QUESTION ABOUT, YOU
KNOW, IS THERE ANY WAY TO
CIRCUMVENT THE STATES THAT TAKE
BABY AWAY?
LIKE I THOUGHT THE CHILD WAS
IMPORTANT.
THE CHILD AND FAMILY ARE
IMPORTANT.
HOW ARE YOU SUPPOSED TO LIKE
TAKE CARE OF A CHILD IF YOU GIVE
IT TO FOSTER CARE AND FOSTER
CARE IS NOT A HAPPY PLACE A LOT
OF TIME.
I DON'T KNOW IF ANYONE KNOWS
THIS.
A TON OF ABUSE HAPPENS IN FOSTER
CAREA SHIT TON, THAT YOU WOULD
TAKE BABY AWAY FROM THE FIRST
PLACE, BECAUSE MOM SAYS I NEED
HELP.
LIKE IT'S INSANE.
I THINK THAT WAS MY
QUESTION/COMMENT.
>> THANK YOU.
>> THANK YOU, CJ.
IF WE DON'T HAVE URGENT
QUESTIONS ON VIDEOCAST, NEXT
PRESENTATIONS, NEXT
PRESENTATIONS FROM SAMHSA.
WE HAVE TEN MINUTES FOR EACH
REPORT.
THEN WE HAVE TIME FOR
DISCUSSION.
>> JON DUNBAR-COOPER FROM
SAMHSA.
>> IT'S ANOTHER TECHNICAL ISSUE
BUT IT SHOULD BE FIXED VERY
QUICKLY.
>> WELCOME TO THE PUBLIC MEETING
FOR 2021.
I'M GOING TO SHARE THREE SAMHSA
RESOURCES WITH YOU, AND INDIANA
FASD PREVENTION PROGRAM.
HI, EVERYBODY.
I HAVE TO SAY THAT SAMHSA DOES
NOT HAVE AN FASD PORTFOLIO.
WE DO HAVE BEHAVIOR HEALTH
RESOURCES AVAILABLE FOR
CLINICIANS AND FAMILIES AND
PEOPLE WITH FASD AND SUPPORTERS
AND SO FORTH.
I'M GOING TO GIVE BEHAVIORAL
HEALTH RESOURCES SAMHSA HAS.
FIRST IS SBIRT, WHERE HOSPITAL
EMERGENCY ROOMS, TRAUMA CENTERS
AND COMMUNITY SETTINGS PROVIDE
OPPORTUNITIES FOR EARLY
INTERVENTION, WITH AT RISK
SUBSTANCE USERS BEFORE MORE
SEVERE CIRCUMSTANCES OCCUR.
SEVERAL RENDITIONS OF THIS NOFO,
AND IN 2024 A NEW ONE CAME OUT
SO IF YOU CLICK ON THIS LINK AND
I'M ASSUMING TATIANA THAT THE
PRESENTATIONS WILL BE AVAILABLE
FOR EVERYBODY AFTERWARDS.
YOU CAN FIND OUT MORE ABOUT
GRANTEES AND ACCESS TO FOLLOWING
INFORMATION ON THAT LINK.
WE ALSO HAVE CHANGING HOW WE
DELIVER TREATMENT AND RECOVERY,
POWER OF PERCEPTION,
UNDERSTANDING CHANGING, HOW WE
DELIVER TREATMENT AND RECOVERY
SERVICES.
THIS FOUR-PART WEBCAST SERIES
EDUCATED HEALTH CARE
PROFESSIONALS ABOUT IMPORTANCE
OF USING APPROACHES THAT ARE
FREE OF DISCRIMINATORY
ATTITUDES, ET CETERA.
THEY ARE WEBCASTS, FEATURED
DISCUSSIONS AMONG EXPERTS IN THE
FIELD OF ADDICTION, TREATMENT
RESEARCH AND POLICY AND ACCESS
AT THIS LINK ON THE SLIDE.
THESE ARE ADDITIONAL RESOURCES
FOR TREATMENT AND RECOVERY
SAMHSA HAS, THESE LINKS WILL
WORK IF YOU CLICK ON THEM.
WE ALSO HAVE MEDICATIONS OF
SUBSTAPS USE DISORDERS.
WE HAVE SOME NEW NOFOS FOR
PREGNANT AND POSTPARTUM WOMEN,
ELIGIBILITY WAS U.S. TERRITORIES
AND STATES.
THE ONE BEFORE THAT WAS FOR
TRIBES, NON-PROFITS, AND SUCH
ORGANIZATIONS.
AGAIN, THESE ARE MEDICATIONS
WE'RE TALKING ABOUT, COUNSELING
AND BEHAVIORAL HEALTH THERAPY,
MEDICATION ACE PROVED BY FOOD
AND DRUG ADMINISTRATION AND LINK
TO CO-OCCURRING DISORDERS THAT'S
ON THE BOTTOM OF THE SLIDE.
WE HAVE GENDER-BASED VIOLENCE
IMPLEMENT OF THE U.S. NATIONAL
PLAN, 3R0EUDING AN OPPORTUNITY
TO RAISE AWARENESS ABOUT LINK
BETWEEN GBV AND MENTAL HEALTH
AND SUBSTANCE USE AND TAKE
FURTHER ACTION, I NEED NOT
EXPLAIN WHY THIS IS IMPORTANT TO
THE FIELD BUT IT IS.
SAMHSA JOINED OPERATING
DIVISIONS, ALONG WITH OTHER
FEDERAL AGENCIES IMPLEMENTING
INTERDEPARTMENTAL APPROACH,
SAMHSA ENGAGED WITH EXTERNAL
PARTNERS AND STAKEHOLDERS
INCLUDING THOSE WITH LIVED
EXPERIENCE TO ENHANCE AGENCY'S
WORK.
ADDITIONAL INFORMATION IS ON THE
LINK BELOW.
WE ALSO HAVE A SERIES ON EARLY
SERIOUS MENTAL ILLNESS LOCATOR,
CONFIDENTIAL SOURCE OF
INFORMATION FOR PERSONS AND
FAMILY MEMBERS WHO SEEK
TREATMENT FACILITIES IN THE
UNITED STATES OR U.S.
TERRITORIES.
SCHIZOPHRENIA, PSYCHOSIS.
SUBMIT REQUEST TO ESMI@SAMHSA.H.
MENTAL HEALTH AWARENESS
TRAINING, PREMIUMS
I NDIVIDUALS -- PREPARES
INDIVIDUALS TO RESPOND
APPROPRIATELY PARTICULARLY THOSE
ARE SERIOUS DISTURBANCES.
INDIVIDUALS RECEIVE KNOWLEDGE,
SKILLS, CONFIDENCE, RESOURCES TO
ENGAGE WITH SOMEONE EXPERIENCING
MENTAL HEALTH AND/OR SUBSTANCE
USE CHALLENGES.
SO THIS IS A TOOL THAT
SUPPORTERS OF INDIVIDUALS WITH
FASD, FAMILY MEMBERS AND SO
FORTH CAN REALLY USE AND
UNDERSTAND.
AGAIN, THERE'S A LINK TO THAT
RESOURCE.
WE HAVE PAIMI TO PROTECT AND
ADVOCATE FOR RIGHTS OF ADULT WAS
SERIOUS MENTAL ILLNESS THROUGH
ACTIVITIES TO ENSURE ENFORCEMENT
OF CONSTITUTION AND FEDERAL AND
STATE STATUTES, ADDITIONAL GRANT
INFORMATION ACCESSED AS
FOLLOWING URL.
WE HAVE A NATIONAL NETWORK TO
ELIMINATE DISPARITIES, TO
ELIMINATE IN BEHAVIORAL HEALTH,
NETWORK OF COMMUNITY-BASED
ORGANIZATIONS FOCUS ON MENTAL
HEALTH AND SUBSTANCE USE ISSUES
OF DIVERSE RACIAL AND ETHNIC
COMMUNITIES.
CONTACT NNE DID TO REQUEST
INFORMATION, TRAINING, TECHNICAL
ASSISTANCE TO PROMOTE BEHAVIORAL
HEALTH EQUITY.
SAMHSA IS REALLY INTO
ELIMINATING DISPARITIES AND
BEHAVIORAL HEALTH.
IT'S WOVEN THROUGH OUR TECHNICAL
ASSISTANCE AND TRAINING.
WE ALSO HAVE EARLY CHILDHOOD
MENTAL HEALTH PROGRAMS.
CURRENTLY THREE, CENTER OF
EXCELLENCE, CLICK THE FOLLOWING
LINKS TO GET MORE INFORMATION
ABOUT THOSE PROGRAMS.
WE HAVE A NATIONAL CHILD
TRAUMATIC STRESS INITIATIVE.
IMPROVES TREATMENT AND SERVICES
FOR CHILDREN, ADOLESCENTS,
FAMILY WHO EXPERIENCED TRAUMATIC
EVENTS.
AGAIN, AT THE BOTTOM THERE'S THE
INFORMATION LINK.
WE ALSO HAVE HOTLINES,
998-SUICIDE AND CRISIS LIFE
LINE, NATIONAL DISASTER DISTRESS
HELP LINE.
>> THANK YOU FOR COMING TO OUR
MEETING AND LISTENING TO MY
PRESENTATION.
>> THANK YOU.
FOR VIDEOCAST, IF YOU WOULD LIKE
TO HAVE SLIDES, YOU CAN SEND US
E-MAIL AND WE WILL PROVIDE YOU
POWERPOINT HANDOUTS SO YOU CAN
USE ALL THESE LINKS, ACCESS THIS
INFORMATION.
NEXT TWO PRESENTATIONS
PRE-RECORDED VIDEO, WE WILL
WATCH PRESENTATIONS AND AFTER
TWO PRESENTATIONS WE WILL HAVE
DISCUSSION TIME.
NOW WE HAVE PRESENTATION AND
THIS PRESENTATION WILL BE FROM
CENTERS FOR DISEASE CONTROL AND
CONTROL.
SHIN KIM.
ALL RIGHT.
>> HELLO, I'M SHIN KIM, I'LL BE
GIVING AN UPDATE FOR CDC TODAY.
THIS YEAR DR. COHEN, OUR
DIRECTOR, PROPOSED PRIORITIES
FOR CDC TO FOCUS ON TO PROTECT
HEALTH AND IMPROVE LIVES.
ON THE HEELS OF COVID READINESS
AND RESPONSE IS A KEY PRIED.
WE AIM TO HAVE INFRASTRUCTURE IN
PLACE TO DETECT HEALTH THREATS
EARLY AND ENSURE WE'RE READY TO
RESPOND TO WHAT COMES NEXT.
NEXT IMPROVING MENTAL HEALTH
SPECIFICALLY REDUCING SUICIDE
AND OVERDOSE AND PROTECTING
YOUTH MENTAL HEALTH.
THIRD SUPPORTING YOUNG FAMILIES.
THIS PRIORITY IS MORE BROAD IN
NATURE BUT FOCUSES ON REDUCING
MATERNAL MORTALITY, FOSTERING
POSITIVE CHILDHOOD EXPERIENCES,
SUPPORTING HEALTH OF CAREGIVERS.
LASTLY THESE ARE BUILT ON THE
FOUNDATION OF ONE CDC.
WE CAN'T MAKE LASTING PROGRESS
WITHOUT A FOUNDATION AS ONE CDC
WORKING TOGETHER AS ONE TEAM
WITHIN ACCIDENT CLINICAL HEALTH
AND PUBLIC HEALTH EXTERNALLY.
OUR DIFFERING HAS FIVE FOCUS
AREAS AND STRATEGIC PLAN.
AS YOU CAN SEE ADDRESSING AND
REDUCING IMPACT OF OF SUBSTANCE
USE AND DISORDER DURING
PREGNANCY IS ONE OF THEM.
THESE PROJECTS CLEARLY ALIGN
WITH PRIORITY AND DEMONSTRATE
COMMITMENT TO MAKING IMPACT IN
THIS AREA.
OUR WORK TO ADDRESS AND REDUCE
IMPACT OF SUBSTANCE USE AND
SUBSTANCE USE DISORDER DURING
PREGNANCY ALIGNS WITH FOCUSING
ON PREVENTION, IDENTIFICATION,
AND INTERVENTION, AND
SURVEILLANCE AND RESEARCH.
SO I WILL TALK ABOUT SOME
SURVEILLANCE AND RESEARCH
ACTIVITIES.
IN A RECENT SURVEY, A WEB PAGED
PANEL SURVEY OF CLINICIANS,
ACTIVELY PROVIDING CARE TO
PATIENTS IN THE U.S., 1500
CLINICIANS ANSWERED QUESTIONS
WITH PREGNANT PATIENTS AND FOUND
MOST CLINICIANS REPORTED
SCREENING IN CONDUCTING BRIEF
INTERVENTIONS, HOWEVER LESS THAN
HALF FELT CONFIDENT ABOUT
SCREENING AND ONE-THIRD FELT
CONFIDENT ABOUT CONDUCTING
BRIEFED INTERVENTIONS.
TWO-THIRDS REPORTED USING
EVIDENCE-BASED TOOLS THAT MET
CRITERIA RECOMMENDED BY U.S.
PREVENTION SERVICES TASK FORCE.
IN THE PREGNANCY RISK ASSESSMENT
MONITORING SURVEY, PRAMS, THE
PROPORTION OF RESPONDENTS,
ADVISED WAS 25.4% AND ADVISED TO
REDUCE ALCOHOL USE 3.9%.
APPROXIMATELY 1 IN 5 PERSONS WHO
REPORTED SUBSTANCE USE DURING
PREGNANCY ENGAGED IN
POLYSUBSTANCE USE IN THE SAME
PRAMS SURVEY.
CDC HAS BEEN COMMITTED TO
ADDRESSING ALCOHOL USE DURING
PREGNANCY AND UNDERSTANDING THE
POPULATION OF CHILDREN WITH
FASDs THROUGH PUBLIC HEALTH
SURVEILLANCE SINCE 1990s.
WE HAVE COOPERATIVE AGREEMENT TO
INFORM CHANCE, I-FASD FOR SHORT,
THE GOAL OF THE PROJECT TO
ENHANCE UNDERSTANDING OF
EXISTING HEALTH CARE DATA AND
EXPLORE OPPORTUNITIES TO
LEVERAGE DATA FOR PUBLIC HEALTH
SURVEILLANCE.
THREE MAIN STRATEGIES, FIRST OF
WHICH IS TO IDENTIFY DATA
SOURCES AND DATA ELEMENTS THAT
MIGHT BE IMPORTANT FOR FASD
SURVEILLANCE, SECOND IS TO
CHARACTERIZE AVAILABILITY AND
QUALITY OF DATA, AND THIRD IS TO
UNDERSTAND AND DESCRIBE PATHWAYS
AND PROCESSES THROUGH CARE.
FINALLY MATERNAL AND INFANT
CLINICAL NETWORK, A SURVEILLANCE
SYSTEM OF CLINICAL SITES,
PURPOSE TO SUSTAIN, IMPROVE,
EXPAND EXISTING PREGNANT
PEOPLE-INFANT LINKED
LONGITUDINAL SURVEILLANCE DATA
TO IMPROVE DATA QUALITY OF KEY
EXPOSURES AND EVENTS.
FROM 2019-2023 HAD SEVEN SITES
COLLECT DATA, INCLUDING 6,000
DYADS, AND DATA ARE CURRENTLY
HOSTED ON RESEARCH DATA CENTER.
IN 2023 WE EXPANDED TO 11
CLINICAL SITES INCLUDING FIVE
PREVIOUS SITES, TO COLLECT DATA
ON MOUD AS EXPANDING TO POLY
SUBSTANCE USE, MEGALOVIRUS AND
STILL BIRTH.
NEXT I'LL TALK ABOUT OUR
PREVENTION, IDENTIFICATION, AND
INTERVENTION EFFORTS.
WE'LL START WITH NATIONAL
PARTNERSHIP WORK, PURPOSE OF THE
NETWORK WAS TO BUILD
COLLABORATIVE FRAMEWORK OF
NATIONAL PARTNER ORGANIZATIONS,
CONTRIBUTE TO REDUCING PRENATAL
ALCOHOL AND OTHER SUBSTANCE USE,
IMPROVING SUPPORT SERVICES AND
ACCESS TO CARE, IMPROVING
IDENTIFICATION AND HEALTH OF
CHILDREN, FAMILIES, WITH
FASDs.
PRIMARY FOCUS AREAS FOR THE
NETWORK INCLUDE EXPANSION,
COORDINATION AND DISSEMINATIONS,
IMPROVING EDUCATION, BUILDING
CAPACITY TO REACH AFFECTED
POPULATIONS AND INTEGRATING
LIVED EXPERIENCE.
HIGH LEVEL SUCCESSES
ACCOMPLISHED BY OUR NATIONAL
PARTNER NETWORK IN THE FIRST
YEAR AND A HALF INCLUDES THESE
THREE THEMES, PARTNER
COORDINATION AND COLLABORATION.
OUTREACH AND CAPACITY BUILDING
AMONG CLINICAL AND NON-CLINICAL
WORKFORCE.
INFORMATION SHARING AMONG PEOPLE
WITH LIVED EXPERIENCE OF FASDs
SUCH AS INDIVIDUALS AND
FAMILIES.
ACROSS ALL NINE RESENTS WE HAD
90 CHAMPIONS ADDED, INCLUDING
ALL SEPARATE CHAMPIONS NETWORK
TOGETHER, 56 PRODUCTS AND
EDUCATIONAL RESOURCES ABOUT
FASDs SHARED, PRODUCTS AND
RESOURCES INCLUDED BUT NOT
LIMITED TO WEB PAGES, JOURNAL
ARTICLES, TRAININGS, HEALTH
COMMUNICATION RESOURCES,
PROVIDER TOOL KITS, EDUCATIONAL
RESOURCES FOR PATIENTS, ALSO
OVER 50 EDUCATIONAL
OPPORTUNITIES EFFORTS.
SUCH AS WEBINARS, TRAININGS,
CONFERENCE PRESENTATIONS.
THESE EVENTS HAD OVER 8,000
ATTENDEES INCLUDING CLINICIANS,
NON-CLINICIANS, FASD SUBJECT
MATTER EXPERTS.
NEW PROJECT IS CREATING
PREGNANCY AND POSTPARTUM
CONTINUING EDUCATION CERTIFICATE
PROGRAM FOR PEER RECOVERY
WORKFORCE.
RESEARCH DEMONSTRATES WORKERS
HELP IMPROVE OUTCOMES FOR
PERSONS WITH SUBSTANCE USE
DISORDERS.
CURRENTLY PEER RECOVERY WORKERS
DO NOT RECEIVE SPECIFIC
STANDARDIZED TRAINING ABOUT
SUBSTANCE USE DISORDER IN
PREGNANCY AS PART OF STATE
ACCREDITORRED CERTIFICATIONS.
TO ADDRESS THIS DEVELOPING A
NATIONAL ACCREDITED
CERTIFICATIONS FOR PREGNANT AND
POSTPARTUM PEOPLE WITH SUBSTANCE
USE DISORDER.
WE'RE ALSO WRAPPING UP OUR
PROJECT THAT WE CALL PRENATAL
ALCOHOL AND OTHER DRUG EXPOSURES
PROJECT IN CHILD WELFARE, AN
INTERAGENCY AGREEMENT WITH
ADMINISTRATION FOR CHILDREN AND
FAMILIES, WITH GOAL OF IMPROVING
HEALTH, DEVELOPMENTAL OUTCOMES
AND FAMILY PRESERVATION OF
CHILDREN WITH PRENATAL ALCOHOL
AND/OR OTHER DRUG EXPOSURES IN
THE WELFARE SYSTEM.
WE'VE CONDUCTED STUDIES OF
PRACTICE AND NEED FOR CHILDREN,
FOR IDENTIFYING AND CARING FOR
CHILDREN WITH SUBSTANCE
EXPOSURES, AVAILABLE IN THE
REPORTS LISTED BELOW.
ONLINE TRAINING COURSES, MODULES
TO ACHIEVE RESOURCES THAT WILL
BE AVAILABLE ONLINE AND
ELECTRONIC TOOLS FOR MAPPING
SERVICE PATHWAYS FOR TRIBAL
COMMUNITIES.
COLLECTIVELY PROJECTS HAVE HAD
MANY ACCOMPLISHMENTS AND
CONTRIBUTE TO REDUCING PRENATAL
SUBSTANCE EXPOSURE, ENHANCING
SERVICES, UNDERSTANDING VARIOUS
PROCESSES AND BUILDING
FOUNDATION FOR SURVEILLANCE.
ULTIMATELY THESE EFFORTS ARE
SUPPORTING PREGNANT PEOPLE AND
CHILDREN AFFECTED BY ALCOHOL AND
OTHER SUBSTANCE USE.
FINALLY I WANT TO TALK ABOUT
SOME RECENT COMMUNICATION
RESEARCH EFFORTS.
A FEW YEARS BACK IN 2017 CDC
AWARDED COMMUNICATION CONTRACT
TO AMERICAN INSTITUTE FOR
RESEARCH, TO IMPROVE THE WAY
HEALTH CARE PROVIDERS DELIVER
MESSAGING ABOUT RISK OF ALCOHOL
ALLS DURING PREGNANCY AND ENGAGE
HEALTH CARE PROVIDERS IN
DELIVERY OF SCREENING AND BRIEF
INTERVENTION FOR THEIR PATIENTS,
PARTICULARLY PREGNANT OR CAN
BECOME PREGNANT INCLUDING ONLINE
SURVEY WITH HEALTH CARE
PROVIDERS, INTERVIEWS WITH
PROVIDERS AND IN-DEPTH
INTERVIEWS WITH WOMEN OF
REPRODUCTIVE AGE.
FINDINGS FROM THE SURVEY AND
INTERVIEWS WERE USED TO INFORM
DEVELOPMENT OF MESSAGE CONCEPTS
FOR PATIENT-PROVIDER
COMMUNICATION, IN 2020 AWARDING
A CONTRACT TO TEST CONCEPTS,
DEVELOP FINAL PRODUCTS FOR
PATIENT-PROVIDER COMMUNICATION
AND DEVELOP CDC GUIDE FOR
MESSAGING.
s
BASED ON FINDINGS WE ENDED UP
WITH A SUITE OF MATERIALS, THE
FIRST STEP WAS TEAM CREATED
CREATIVE BRIEFS AND STORY BOARDS
FOR EACH AUDIENCE AND PIECE TO
BE DEVELOPED.
AFTER INCORPORATING FEEDBACK
THE TEAM DEVELOPED STORY BOARDS.
FEATURED ON THE RIGHT IS FROM
ORIGINAL BRANDING PRESENTATION
FROM DESIGN TEAM THAT ORAU USED,
ROBIN EASTER DESIGN OUT OF
KNOXVILLE, TENNESSEE.
LAST SEPTEMBER WE SHARED THE
FINAL MATERIALS VIA CDC WEB
FEATURE IN TIME FOR FASD
AWARENESS MONTH.
TO ACCESS THE MATERIALS GO TO
THE LINK HERE, YOU CAN GO TO OUR
HOME PAGE AT CDC.GOV/FASD, FIND
A LINK TO THEM AT THE TOP OF THE
PAGE.
THIS IS JUST A SCREEN SHOT OF
THE TOP OF THE PAGE BUT AS YOU
SCROLL DOWN THERE ARE LINKS TO
MATERIALS INCLUDING VIDEOS
HOUSED ON CDC'S YouTube
CHANNEL.
I WANTED TO ALERT YOU TO A NEW
WEBSITE LAUNCHING ON MAY 15.
THIS IS A CDC-WIDE EFFORT, EVERY
TOPIC AND EVERY WEB PAGE ACROSS
THE AGENCY HAS BEEN-REVAMPED TO
MAKE INFORMATION MORE
STREAMLINED, EASIER FOR WEB
USERS TO FIND.
THE PROCESS OF REDESIGNING
FASD-RELATED CONSENT, WE SPLIT
INTO TWO SITES SO THERE'S ONE
SITE ON FASD, SEPARATE SITE ON
ALCOHOL USE AND PREGNANCY, PAGES
ARE CROSS-LINKED, TO EACH OTHER.
WHAT YOU SEE HERE ARE URLs FOR
BOTH SITES, PREES -- PLEASE
NOTE IT IS SCHEDULED TO BE
LAUNCHED FOR MAY 15, THEY DON'T
WORK YET.
IF YOU DO GO TO THE OLD URL IT
WILL REDIRECT YOU TO OUR NEW
SITES.
THANK YOU FOR YOUR TIME.
>> WE'LL GO WITH ANOTHER
PRESENTATION, LAST PRESENTATION
PLEASE HAVE IT ON VIDEO.
WE ASK OUR I.T. SUPPORT TO GIVE
SECOND PRESENTATION ON VIDEO.
SECOND PRESENTATION RECORDED
WILL BE INDIAN HEALTH SERVICES.
AND AFTER PRESENTATION WE'LL
HAVE DISCUSSION.
>> THANK YOU FOR THE OPPORTUNITY
TO PROVIDE UPDATES ON BEHALF OF
THE INDIAN HEALTH SERVICE, IHS.
I'M TINA PATTARA-LAU, OB/GYN
PROVIDING CARE IN PHOENIX AREA.
INDIAN HEALTH SERVICE IS FEDERAL
AGENCY THAT PROVIDES HEALTH CARE
SERVICES TO 2.8 MILLION AMERICAN
INDIAN AND ALASKA NATIVES FROM
274 STRIKES, TO RAISE PHYSICAL,
MENTAL, EMOTIONAL AND SPIRITUAL
HEALTH.
THE VISION OF THE PROGRAM IS
HEALTHY PREGNANCIES, HEALTHY
BABIES, HEALTHY COMMUNITIES.
PREGNANT PEOPLE ARE HEALTHY AND
WELL CARED FOR, NEWBORNS,
CHILDREN AND COMMUNITIES THRIVE.
HISTORY AND LIVED EXPERIENCE
INFORM OUR WORK.
WE KNOW EFFECTS OF 2*EUS
HISTORICAL TRAUMA LIST
GENERATIONS, WITH ADVERSE
CHILDHOOD EXPERIENCES AND SOCIAL
DETERMINANTS OF HEALTH CAN
DISPROPORTIONATELY AFFECT
AMERICAN INDIAN AND ALASKA
NATIVE PERSONS, THIS HISTORY
CONTRIBUTES TO MISTRUST AND
AVOIDANCE OF SEEKING CARE WITH
INSTITUTIONALIZED HEALTH CARE
SYSTEMS.
IHS ADAPTED APPROACHES TO
INCREASE ACCESS TO CARE AND
SUPPORT THE MATERNAL INFANT DYAD
BEFORE, DURING, AFTER PREGNANCY.
OUR GOAL TO BRIDGE THE GAP
BRINGING NATIONAL RESOURCES TO
THE BEDSIDE AND COMMUNITIES,
LEADING WITH CULTURAL SAFETY AND
HUE ANYTIME MILTED -- HUMILITY,
INTENTIONAL ABOUT LIFTING UP
INDIGENOUS WOKERS, PROVIDING
SITES IN MATERNITY CARE, THE
PROGRAM HAS TWO PARTS.
MANUAL CREATED BY
MULTI-DISCIPLINARY GROUP
PROVIDING CHECK LISTS,
PROTOCOLS, CURRICULUM, FOR
SCREENING IN PREGNANT PERSONS.
AFTER REVIEW BY 25 IHS SITES,
MANUAL IS CURRENTLY UNDERGOING
INTERNAL REVIEW, WE HOPE TO
SHARE THIS WITH OUR PARTNERS.
FIVE SITES AND 225 STAFF
PARTICIPATED IN RANGE AND WE
PROVIDE TECHNICAL ASSISTANCE TO
SITES IN BILLINGS, BIMIJI, AND
PHOENIX.
PARTNERED WITH NORTHWEST
PORTLAND AREA TO LAUNCH A
SERIES, TOPICS INCLUDING
SCREENING AND INTERVENTION FOR
ALCOHOL AND SUBSTANCE USE IN
PREGNANCY, STRATEGIES FOR HARM
REDUCTION, HOPE COMMITTEE
UPDATED FAMILY CARE PLANS AND
RESOURCES, UCSF SUBSTANCE USE
LINE AND HRSA MATERNAL HEALTH
OUTLINE, FEATURING WORK
TREATMENT OFFICERS THAT SUPPORT
PREGNANT PEOPLE AND FAMILIES IN
PHOENIX, ARIZONA.
ATTENDED BY 1400 PARTICIPANTS
AND TRIBAL AND URBAN SITES,
INCLUDED COLLEAGUES IN
BEHAVIORAL HEALTH, COUNSELORS,
SOCIAL WORKERS, COMMUNITY
LEADERS.
TO ADDRESS SOCIAL DETERMINANTS
OF HEALTH INCREASED ACCESS TO
CARE IN THE COMMUNITY IHS WILL
PILOT MCC PROGRAM, FUNDING SITES
SPECIFIC MCCs TO PROVIDE
TELEHEALTH SUPPORT, PARTNERSHIP
WITH TRUSTED LEADERS AND TERT
CARRY CARE CENTERS TO EXTENDS
CARE BEYOND THE CLINIC,
TRANSITION IN THE CRITICAL
POSTPARTUM PERIOD TO INCREASE
ACCESS TO CARE, INCLUDING
REFERRAL TO TREATMENT FOR
ALCOHOL AND SUBSTANCE USE IN
PREGNANCY FUNDING SIZE ACROSS
SIX AREAS.
THANK YOU FOR THE OPPORTUNITY TO
PROVIDE UPDATES TODAY AND FOR
CONTINUING TO ADVOCATE FOR
HEALTH AND WELL-BEING OF
INDIGENOUS COMMUNITIES.
PLEASE REACH OUT IF YOU HAVE
QUESTIONS.
THANKS.
>> ALL RIGHT.
THANK YOU VERY MUCH FOR
PRESENTATIONS.
NOW WE HAVE TIME FOR DISCUSSION.
WE HAVE THREE PRESENTATIONS FROM
SAMHSA, CDC, AND INDIAN HEALTH
SERVICES.
WELCOME, QUESTIONS AN COMMENTS.
WE HAVE AN ONLINE QUESTION FOR
CDC IF SHIN CAN HEAR ME.
>> YES, I HEAR YOU.
>> SO, THE QUESTION, IN
REPORTING ON TRAINING AND
INCREASED INTENTION TO CHANGE
PRACTICE, HAS IT BEEN POSSIBLE
TO IDENTIFY WHICH PRACTICES,
POLICIES AND OUTCOMES HAVE
ACTUALLY IMPROVED?
HOW FORMAL IS THE EFFORT TO MOVE
PILOT PROJECTS TO SCALE?
A COMMENT FROM CINDY GARDNER.
>> SO, I'M NOT SURE WHICH PILOT
PROJECT THAT SHE'S REFERRING TO.
I THINK IN TERMS OF TRYING TO
FIGURE OUT IMPACT OF OUR
PROGRAM, IT'S ALWAYS A CHALLENGE
GIVEN THAT OUR DATA, WE HAVE
DATA ON ALCOHOL USE AND THEN WE
HAVE, YOU KNOW -- WE'RE STILL
TRYING TO GET SOME DATA ON FASD,
SO WE DON'T HAVE A LOT OF DATA
THAT KIND OF, YOU KNOW, REALLY
GETS AT LIKE HOW THE TRENDS OF
ALCOHOL USE IN PREGNANCY IS
DIRECTLY AFFECTING FASD
ESTIMATES, GIVEN THAT WE DON'T
CURRENTLY HAVE, YOU KNOW, A TRUE
WAY TO ESTIMATE FASDs, BUT I
THINK A LOT OF THE EFFORTS ARE,
YOU KNOW, VERY MUCH TRYING TO
TARGET AND TRYING TO THINK
ABOUT, YOU KNOW, WAYS TO ADDRESS
ALCOHOL USE IN PREGNANCY AND
TRYING TO THINK ABOUT ESTIMATES
AROUND ALCOHOL USE IN PREGNANCY,
HOPING THAT IT WILL HAVE --
TRYING TO ADDRESS THINGS
UPSTREAM SO THAT IT WOULD IMPACT
THE WORK DOWNSTREAM.
I KNOW THAT'S NOT ALWAYS THE,
YOU KNOW, ANSWER THAT FOLKS ARE
WANTING BUT I THINK -- THAT IS
WHY WE'RE TRYING TO EXPLORE HOW
WE CAN BETTER ESTIMATE FASDs
TO TRY TO SEE HOW OUR WORK CAN
IMPACT -- HOW OUR WORK IS
POSSIBLY IMPACTING FASD
ESTIMATES, BUT TRULY IT IS A
CHALLENGE.
WE'RE LEARNING A LOT ABOUT HOW
FASDs ARE DIAGNOSED TO FIGURE
OUT PLACES WHERE WE CAN MAKE
THOSE IMPACTS, AND IN TERMS OF
TRYING TO MOVE EFFORTS TO SCALE
I THINK PART OF IT IS FUNDING,
PART IS JUST REALLY BEING ABLE
TO DEMONSTRATE THE WORK THAT
WE'RE TRYING TO DO TRULY WORKS,
AND WE DON'T WANT TO SCALE
SOMETHING UP THAT ISN'T WORKING
AND ALSO JUST WORKING WITH OUR
PARTNERS TO REALLY KIND OF
ADDRESS AND LEARN WHAT IS
EFFECTIVE AND IMPACTFUL.
I THINK THIS SPACE IS CONSTANTLY
CHANGING, AND SO I THINK WE'RE
ALSO JUST TRYING TO KIND OF, YOU
KNOW, BE COGNIZANT OF CHANGES
HAPPENING, AND SO, YES, I HOPE I
ANSWERED THE QUESTION BUT I WILL
TURN TO SEE IF MARY-KATE OR
ELIZABETH HAVE ANYTHING TO ADD
TO THAT.
>> PART OF THE QUESTION WAS
MAYBE LIKE HOW DO WE KNOW IF
WE'VE MADE A DIFFERENCE WITH
SOME HEALTH CARE DISCIPLINES
MORE THAN OTHERS.
OVER THE YEARS WE'VE KIND OF
MOVED AWAY FROM JUST A TRAINING
APPROACH BECAUSE IT WAS ACTUALLY
VERY EASY TO SHOW THAT THERE
WERE INCREASES IN KNOWLEDGE AND
INTENT TO CHANGE PRACTICE AND
THAT SORT OF THING ACROSS ALL OF
THE DISCIPLINES THAT WE'VE BEEN
WORKING WITH OVER THE YEARS BUT
WE RECOGNIZE THAT'S NOT ENOUGH
TO ACTUALLY CREATE PRACTICE
CHANGE AND WE WERE TRAINING UP
TO 500 HEALTH CARE PROFESSIONALS
PER MONTH BACK WHEN WE HAD
REGIONAL TRAINING CENTERS BUT
SOMEONE CAN'T IMPLEMENT THAT IN
THEIR SYSTEM OF CARE BECAUSE ONE
PERSON WANTS.
TO THAT'S WHY WE LATER MOVED TO
IMPLEMENT IN LARGE HEALTH CARE
SYSTEMS WITH SCREENING AND BRIEF
INTERVENTION AND REFERRAL TO
TREATMENT.
SO, ALL THAT TO SAY LIKE SHIN
SAID WE'RE STILL WORKING HARD TO
TARGET THESE HEALTH CARE
DISCIPLINES BUT WE KNOW TRAINING
IS NOT ENOUGH SO THAT'S ALSO WHY
WE HAVE OUR CHAMPIONS NETWORKS,
THAT SHIN TALKED ABOUT IN HER
PRESENTATION.
AND DIFFERENT APPROACHES TO TRY
AND FOSTER COLLABORATION ACROSS
THE GROUPS BECAUSE, AGAIN, IT'S
NOT ENOUGH FOR JUST THE OB/GYN
TO MAYBE KNOW THAT THERE WAS A
HISTORY OF EXPOSURE, THEN THE
PEDIATRICIAN DOESN'T KNOW THAT,
AND ON AND ON.
SO, AGAIN, I'M NOT SURE IF THAT
ANSWERS THE QUESTION.
>> THANK YOU.
I THINK IT'S CRITICALLY
IMPORTANT WE ALL AT THE SAME
TIME DISCUSS, I'M THINKING ABOUT
EFFORTS THAT HRSA CURRENT IS
DOING WITH DIFFERENT PHYSICIANS,
AND EXPERIENCES THAT ELIZABETH
SAYING ABOUT TRAINING NOT BEING
ENOUGH.
I HAVE MY QUESTION NOW.
I DON'T SEE RAISED HAND SO I CAN
ASK WHAT DO YOU THINK WAS YOUR
EXPERIENCE, TRAINING IS NOT
ENOUGH, WE HAVE -- WE HEAR ABOUT
CHANGE FOR 20, 30 YEARS
WHAT IS, FROM YOUR EXPERIENCES,
WHAT DO YOU THINK WE'RE MISSING
HERE?
WHAT ELSE?
TRAINING NOT ENOUGH.
WHAT ELSE?
I SEE JAN'S HAND.
JAN, GO AHEAD.
>> THANK YOU.
I'M THINKING BACK TO EVERYTHING
I'VE BEEN HEARING, A COUPLE
THINGS COME TO MIND.
ONE OF THE PRESENTATIONS, MAYBE
SHIN JUST MENTIONED SOME --
MENTORING -- I'LL USE THE WORD
MENTORING MODEL, HAS ANYBODY
CONSIDERED DEVELOPING A PEER
MENTORING MODEL FOR ADULT WAS
FASD, BECAUSE I THINK IT'S A
CRITICAL ISSUE, LOOKING AT
THINGS THAT EVERYTHING IS
FOCUSED ON YOUNG CHILDREN, YOUNG
FAMILIES, BUT I THINK A KEY
MISSING POINT IS THAT YOUNG
FAMILIES BECOME FAMILIES WITH
OLDER CHILDREN, BECOME FAMILIES
WITH TEENAGERS, BECOME FAMILIES
WITH ADULTS.
AND THEY ARE STILL FAMILIES WITH
CHILDREN OF ANY AGE WITH FASD
AND THE THINGS THEY NEED AS THEY
GET OLDER CHANGE AND ARE
CRITICAL TO DEVELOP.
AND IT'S -- I DON'T MEAN THIS
DISRESPECTFULLY BUT IT'S SHORT
SIGHTED NOT TO CONSIDER THAT
DISABILITIES PERMANENT SO THINGS
THAT NEED TO CONTINUE TO DEVELOP
ACROSS TIME AND SPACE, THAT'S
ONE THING.
ANOTHER THING WHEN YOU LOOK
ABOUT TRAINING, ET CETERA, IS IN
THE PROVINCE OF BRITISH COLUMBIA
IN CANADA THE UNIVERSITY HAS
JUST -- UNIVERSITY OF BRITISH
COLUMBIA WORKED WITH GROUP OF
DOCTORS ASSOCIATION FOR THE
PROVINCE, AND THEN WITH EXPERT
GROUP OF EXPERTS ON FASD
INCLUDING ADULTS WITH FASD,
BIRTH MOTHERS WHO HAVE CHILDREN
WITH FASD, AND ADOPTIVE PARENTS
TO DEVELOP A CURRICULUM FOR THE
FAMILY PROVIDER, FAMILY SERVICE
DOCTOR, FIRST LINE OF ENTRY INTO
THE MEDICAL SYSTEM, SO YOUR
FAMILY PHYSICIANS, GENERAL
PRACTITIONERS ON ALL OF THE
THINGS YOU'VE BEEN TALKING
ABOUT, AND THE GOAL, I BELIEVE
JUST BEING RELEASED TO MAKE IT
MANDATORY FOR ALL HEALTH CARE
PROVIDERS, ONLINE, ALL WILL HAVE
TO TAKE IT, AN ACCEPTED PART OF
ONGOING MEDICAL EDUCATION THAT
THEY NEED TO DO EVERY YEAR, THAT
EVERYBODY WILL HAVE TO HAVE IT
SO DOCTORS, NURSE PRACTITIONERS,
OCCUPATIONAL THERAPISTS, SPEECH
THERAPISTS, MENTAL HEALTH
CLINICIANS, ANYBODY WORKING
WITHIN THE HEALTH CARE SYSTEM,
AND MAYBE THINKING ABOUT ALL OF
THOSE QUESTIONS AROUND HOW YOU
TALK ABOUT ALCOHOL ALLS, HOW YOU
APPROACH FAMILIES, HOW I
INTERACT WITH PATIENTS, WHETHER
IN BIRTH FAMILY, FOSTER FAMILY,
ADOPTIVE FAMILY, ALL OF THOSE
THINGS MEASURE NEED TO TAKE A
STEP BACK TO LOOKING AT OTHER
PLACES WHERE LIKE AT THE LOWEST
LEVEL IF YOU WILL OF THE MEDICAL
SYSTEM RATHER THAN LOOKING AT
PEDIATRICIANS, ET CETERA.
I JUST -- IT'S A QUESTION IF YOU
THOUGHT BIT.
>> THANK YOU, IF ANYONE WANTS TO
ANSWER.
>> I DO.
>> I'LL TALK ABOUT IT AND IF
OTHERS HAVE ANYTHING ELSE TO
SAY.
ACTUALLY TO YOUR FIRST POINT, I
ABSOLUTELY AGREE, I THINK BEING
ABLE TO HAVE, YOU KNOW, KIND OF
PEER RECOVERY SUPPORT,
MENTORSHIP FOR ADULT
POPULATIONS, AFFECTED ADULT
POPULATIONS IS IMPORTANT.
I THINK THAT IS SOMETHING THAT
WE ALL SHOULD THINK ABOUT.
I THINK WHAT'S REALLY
CHALLENGING UNFORTUNATELY IS
THAT THE WAY OUR ORGANIZATIONS
AND SYSTEMS ARE SET UP IS WE ARE
VERY SILOED AND SO OUR DIVISION
IS FOCUSED, YOU KNOW, WHERE WE
GO, WE THINK ABOUT, YOU KNOW,
THROUGH INFANT DISORDERS,
EVERYTHING THAT KIND OF BEYOND
INFANCY INTO CHILDHOOD,
ADULTHOOD IS IN A DIFFERENT
DIVISION.
ON TOP OF THAT SILOED IN TERMS
OF OUR -- THE DISABILITIES WE
FOCUS ON, VERY SILOED.
WE'RE THINKING ABOUT WAYS WE CAN
BRIDGE THOSE EFFORTS AND REALLY
THINK ABOUT THIS AS A LIFESPAN
APPROACH AND NOT JUST THINKING
ABOUT THE CHILD BUT ALSO INTO
ADULTHOOD SO THAT'S A VERY
IMPORTANT POINT AND WE WILL
DEFINITELY CONTINUE TO HAVE
THOSE DISCUSSIONS.
THE THINGS OTHER COUNTRIES, THE
PROGRAM YOU TALKED ABOUT IN
CANADA, THAT'S ALL JUST VERY,
YOU KNOW -- IT'S GREAT AND I
THINK THERE'S DEFINITELY A LOT
WE CAN LEARN FROM THOSE EFFORTS.
UNFORTUNATELY SYSTEMS ARE VERY
DIFFERENT, THERE'S A LOT OF
CHALLENGES, YOU KNOW, WE -- OUR
GROUP HAS BEEN TRYING TO WORK ON
BUILDING INTO CURRICULUM,
BEFORE, YOU KNOW, CURRICULUM AND
CERTIFICATION AND, YOU KNOW, ALL
OF THAT.
YOU KNOW, WE CONSTANTLY KIND OF
HIT, YOU KNOW, HIT A LOT OF
WAFFLES AND A LOT OF CHALLENGES
BEING ABLE TO DO THAT.
BEING ABLE TO BREAK DOWN THOSE
SILOS AS WELL AND BEING ABLE TO
FIGURE OUT HOW TO, YOU KNOW, GET
THAT DONE KIND OF WHILE, YOU
KNOW, DIFFERENT AREAS OF
SPECIALTIES ARE LEARNING AND,
YOU KNOW, AND KIND OF GETTING
THEIR TRAINING, I THINK THAT
WOULD BE GREAT.
TATIANA, EARLIER, WASN'T SURE IF
YOU WERE TALKING TO THE LARGER
GROUP OR US DIRECTLY WHAT ELSE
BEYOND TRAINING, YOU KNOW, I
THINK, YOU KNOW, IT'S TRICKY,
RIGHT?
BECAUSE THAT'S ONE OF THE THINGS
WE HEAR FROM JUST EVEN OUR
CLINICIANS, YOU KNOW, THEY
RECEIVE A LOT OF TRAINING, I
MEAN, YOU KNOW, EVEN WITH
SCREENING BRIEF INTERVENTION AND
REFERRAL TO TREATMENT, KATHY, I
HEARD YOU, YES, THAT'S VERY,
VERY IMPORTANT.
AND WE ARE NOT IGNORING THAT
PIECE BUT, YOU KNOW, I THINK
IT'S JUST THERE'S A LOT.
CLINICIANS ARE HIT WITH A LOT.
I THINK THERE NEEDS TO BE, YOU
KNOW, A PLACE WHERE
CLINICIANS -- IT'S NOT JUST
TRAINING BUT A LOT OF TIMES, YOU
KNOW, EVEN IF THEY ARE TRAINED,
THEY DON'T HAVE RESOURCES, DON'T
HAVE, YOU KNOW, JUST THE TOOLS
TO BE ABLE TO REFER PEOPLE OR,
YOU KNOW, KNOW WHERE TO REFER
PEOPLE NEXT, YOU KNOW.
SO BEING ABLE TO KNOW WHERE
RESOURCES ARE, ALSO POLICY, A
LOT OF THINGS ARE PREVENTING,
YOU KNOW, PEOPLE FROM BEING ABLE
TO, YOU KNOW, TALK ABOUT THESE
THINGS AND DOCUMENT IT AND
PROVIDE THE APPROPRIATE
RESOURCES AND WHAT NOT SO I KNOW
WE ALL KNOW WHAT THE ISSUES ARE
BUT SOMETIMES I THINK TRYING TO
BREAK DOWN THOSE WALLS AND SIGH
LOADS AND GET SOME OF THAT DONE
IS ALWAYS A CHALLENGE.
>> THANK YOU.
IT'S IMPORTANT WE'RE ALL AROUND
THE SAME TABLE THINKING ABOUT
POLICIES AND DIFFERENT
APPROACHES, AND SHARING.
I IT'S IMPORTANT WHAT DIFFERENT
COUNTRIES DO, WE CANNOT DO WHAT
SOME OTHER COUNTRIES DO BUT I
THINK SOMETHING WAS REALLY
IMPORTANT TO ME, WHAT JAN SAID
ABOUT MENTORING MODELS.
I STARTED TO THINK DO WE HAVE
MENTORING MODELS AND WHAT KIND
OF MENTORINGS MODELS WE HAVE
IMPLEMENTED, AT ALL DIFFERENT
LEVELS.
IN TERMS OF EVIDENCE.
I CANNOT THINK ABOUT NOT VERY
MUCH, NOT VERY MUCH.
IT'S MORE DIFFICULT.
SOMETHING ELSE TO THINK ABOUT.
THANK YOU.
WE DO HAVE -- I KATIE, I SEE OUR
HAND.
YOU'RE NEXT.
>> I WANTED TO GET TO TRAINING,
YOUR ORIGINAL QUESTION.
ONE OF THE THINGS THAT WE
DISCOVERED, WELL, THAT WAS
PROVEN DURING THE PROCESS OF
RESEARCH WITH PATRICK CORRIGAN,
CERTAINLY I EXPERIENCED 30-SOME
YEARS AGO, PEOPLE WILL HEAR THE
INFORMATION, THEY SAY, OH, OKAY,
I GET IT.
THAT MAKES SENSE.
THEY ARE NOT MOTIVATED TO DO
ANYTHING WITHOUT HAVING THAT
EXPERIENCE OF HEARING SOMEBODY
WITH A LIVED EXPERIENCE.
THAT DOESN'T JUST MEAN BIRTH
MOTHER, COULD MEAN A PERSON
LIVING WITH AN FASD.
THAT'S THE CLINCHER THAT MAKES
PEOPLE SAY I SHOULD DO MORE.
YOU HEAR THAT, IT'S WELL
DOCUMENTED IN OUR RESEARCH THAT
OB/GYNS REPORTED THAT BUT I
THINK THAT AS WE PUSH FORWARD
AND TRY TO MOVE THIS THING AND
REALLY MAKE SUSTAINABLE CHANGE,
AGAIN I KNOW, I SOUND LIKE A
BROKEN RECORD, BUT WE REALLY
NEED TO THINK ABOUT, YOU KNOW,
WE SHOULDN'T BE JUST MEASURING,
YOU KNOW, THEY LEARNED MORE,
THEY HAVE BETTER KNOWLEDGE, ALL
THAT.
THAT'S ALL WONDERFUL.
BUT HOW IS IT GOING TO -- WHAT
ARE THEY GOING TO DO?
RESEARCH NEXT
RESEARCH NEVER WANTS TO LOOK AT
BEHAVIOR CHANGES.
HOW IS THE SYSTEM GOING TO
IMPROVE?
YOU CAN LOOK AT SYSTEMS OF CARE
LIKE FOSTER CARE, FOR INSTANCE.
IF FAMILIES WANT TO BE A FOSTER
CARE PARENT THERE'S SOME GREAT
CURRICULA OUT THERE TEACHING
PARENTS, NUMBER ONE, LIKE THE
EIGHT MAGIC KEYS, THERE'S A NEW
ONE.
JAN LATKE WAS -- THAT'S A
PRODUCT SHE PUT OUT WITH DEB
MANY YEARS AGO BUT TEACHES
PARENTS HOW TO CREATE AND
ENVIRONMENT BUT NOT TAKE THE
BEHAVIORS PERSONALLY LIKE HE'S
DOING THIS TO GET AT ME.
THEY UNDERSTAND, YOU KNOW, THE
EIGHT CORE ISSUES OF BEHAVIORS
THAT YOU'RE GOING TO SEE YOU A
HOW DO I SET UP THE ENVIRONMENT
AND RESPOND AND DO THIS.
THE OTHER PIECE, THERE ARE SOME
AREAS, AGAIN, THE EXAMINATIONS,
YOU KNOW, BUT GETTING POLICY
CHANGE WITHIN ASSOCIATIONS, AND
LASTLY I'LL SAY WE HAVE HAD A
MENTORSHIP PROGRAM FOR BIRTH
MOTHERS, THROUGH, AND NOW IT'S
EXPANDED THROUGH THE -- IT
STARTED AS CIRCLE OF HOPE, NOW
IT'S AN ONLINE MEETING, I DIDN'T
GET TO TALK ABOUT IT.
EVERY THURSDAY TREATMENT CENTERS
CALL IN FROM ALL OVER WITH WOMEN
THAT COME IN, WOMEN THAT HAVE
LONG-TERM RECOVERY, BRAND-NEW
WOMEN THAT NEED ALL KINDS OF
THINGS, HOW DO I GET MY CHILD
DIAGNOSED, AND THAT'S WHERE A
LOT OF THE STORIES COME IN BUT
THE SAME KIND OF MODEL AND
REALLY THAT'S A 12-STEP MODEL OF
SUPPORT WHICH PROVIDES, YOU
KNOW, A 12-STEP MODEL LIKE
ALCOHOLICS ANONYMOUS BEING THE
FIRST 12-STEP PROGRAM, PROVIDED
EACH PERSON THAT COMES IN WITH A
MENTOR, SO IT'S A VERY EASY
SYSTEM TO CREATE, BUT IT'S ONE
THAT REALLY HASN'T BEEN CREATED
BUT, YOU KNOW, IT'S ONE THAT
DOESN'T REALLY NEED A LOT OF
OVERSIGHT, YOU KNOW.
I KNOW I'M SAYING SOME THINGS
THAT SOME PEOPLE WOULD JUMP ON.
WHAT DO YOU MEAN, OF COURSE YOU
NEED OVERSIGHT, YES, BUT SOME
THINGS CAN BE STARTED.
IT MAY NOT MEAN IT'S PERFECT OR
WHAT HAVE YOU BUT I THINK WE CAN
MAKE CHANGES.
I JUST GET CONCERNED THAT IT'S
LIKE, WELL, THERE'S A LOT OF
BARRIERS.
EVERY STATE'S DIFFERENT.
EVERY SYSTEM'S DIFFERENT.
BUT THERE ARE THINGS THAT WE CAN
PUSH THROUGH, IF IT'S ATTACHED
TO FUNDING, AND GETTING THAT
CERTIFICATE, THAT LICENSE, THAT
WHATEVER IT IS YOU'RE TRYING TO
GET AT, WE CAN TRY TO PUSH IT.
THAT'S WHAT I FEEL WHERE WE'VE
FALLEN SHORT IS THAT IT'S BEEN
TOO MUCH OF TRAINING, WONDERFUL
TRAINING, WE LEARNED A LOT, SEE
'YA LATER, BYE-BYE, AND THEN
NOTHING MORE.
SO THERE'S NEVER BEEN ANY
MEASURABLE LIKE, OKAY, HOW ARE
WE GOING TO CHANGE THE SYSTEM
NOW AND HOW ARE WE GOING TO MAKE
SURE EVERYBODY IN THE
UNIVERSITY'S LEARNING THIS OR
WHATEVER IT IS.
WHATEVER SYSTEM.
SORRY.
>> ALL RIGHT.
THANK YOU.
SO WE WANT TO CHANGE HERE.
I CAN SEE TWO HANDS AND WE HAVE
SOME TIME, C.J., YOU'RE FIRST.
>> I'LL LOWER MY HAND.
I JUST WANT TO GET THIS ON
RECORD.
I WROTE IT DOWN IN THE CHAT.
I WANTED TO SAY HOW CAN YOU
MEASURE SOMETHING DOCTORS ARE
UNWILLING TO DIAGNOSE AND
SYSTEMS ARE ALL TOO EAGER TO
PASS MORAL JUDGMENT ON AND 1/3
OF THE COUNTRY WILL LOCK YOU UP
AND TAKE AWAY YOUR CHILD FOR
DISCLOSURE, THE OTHER UNSPOKEN
ISSUE IS RACIAL BIAS THAT SEEMS
TO BE EVIDENT AND
OVERREPRESENTED IN FOSTER CARE
AND IN JAIL SYSTEMS.
THOSE ARE THE TWO THINGS I WANT
ON RECORD BECAUSE I THINK THEY
ARE BIG ISSUES THAT NEED TO BE
ADDRESSED.
THE OTHER ONE IS ONE OF THE WAYS
I'VE BEEN THINKING ABOUT
TACKLING THE STIGMA IS FOR
PEOPLE WITH FETAL COLLABORATIVE
SPECTRUM DISORDER AND BIRTH
MOMS, THEY DON'T HAVE TO BE
RELATED, TO KIND OF BE SHOWN AS
ALLIES.
YOU CAN'T HAVE THE PERPETRATOR
AND THE VICTIM.
YOU'RE BIOLOGY PEOPLE DOWN TO
LIKE JUST WORDS.
PEOPLE ARE PEOPLE.
AND LIKE I SAID BEFORE, IF
YOU -- FOR ME, MOM HAS ALWAYS
TALKED VERY LOVING, VERY
HONESTLY ABOUT MY BIRTH MOM'S
PROBLEMS.
SHE'S NEVER SAID A BAD WORD
ABOUT MY BIRTH MOM, ONLY SHE HAD
TROUBLES.
THAT SHE WAS AN ALCOHOLIC, THAT
THESE THINGS HAPPENED.
IT WAS THE REST OF THE WORLD
THAT TOLD ME I WAS ALLOWED TO BE
JUDGMENTAL OF HER.
BUT IT WAS KATHY MITCHELL AND IT
WAS PIPA AND IT WAS LINDA
MITCHELL TWO TOLD ME, SHOWED
THEY THEIR HUMANITY, GAVE ME THE
OKAY TO FORGIVE AND BE OKAY WITH
MY OWN DIAGNOSIS.
AND WITHOUT THAT ALLYSHIP I
REALLY THINK WE'RE GOING TO BE
STUCK.
I THINK THAT'S ALL I HAVE TO SAY
ABOUT THAT.
>> ALL RIGHT.
THANK YOU.
ALSO WHEN YOU SPOKE ABOUT GRIEF,
IT'S SOMETHING WE DO NEED TO
THINK ABOUT MORE.
THANK YOU, CJ.
JAN, I SEE YOUR HAND.
AND I THINK THIS WILL BE THE
LAST QUESTION BEFORE WE HAVE
BREAK.
>> TO FOLLOW UP TO THAT, TO SAY
WITH RESPECT TO ALL OF THIS, WE
NEED TO THINK ABOUT WHAT DO
PEOPLE WITH FASD, WHAT ARE
FAMILIES, MORE SPECIFICALLY WHAT
DO PEOPLE WITH FASD NEED GOING
FORWARD IN GROWING UP, WHAT DO
THEY NEED?
WHAT ARE THE THINGS THEY NEED.
EVERYBODY TALKS ABOUT SERVICES
AN SUPPORTS, NOBODY'S REALLY
TALKED ABOUT THE MOST IMPORTANT,
EXACTLY WHAT THEY ARE, WHAT THEY
WOULD LOOK LIKE, WHERE THEY COME
FROM, HOW WE DO IT, BEST PERSON
OR PEOPLE TO DO IT, A DISCUSSION
THAT NEEDS TO HAPPEN.
BECAUSE I THINK IT'S REALLY,
REALLY IMPORTANT.
>> THANK YOU.
THANK YOU, JAN.
WE DO HAVE THE SAME APPROACH,
PREVIOUSLY WHEN WE HAD IF YOU
REMEMBER MEETING WHEN WE DISCUSS
DIFFERENT SERVICES, WE COULD SEE
SOME DISCONNECT BETWEEN SOME
WONDERFUL SERVICES AND PROGRAMS
AND WHAT PEOPLE NEED.
SO THANK YOU.
WE HAVE BRIEF BREAK, VERY BRIEF
BREAK.
AT 3:20 WE'RE COMING BACK TO
CONTINUE OUR PRESENTATIONS AND
DISCUSSION.
THANK YOU.
>> WE'RE LIVE NOW. THIS IS OUR LAST SEGMENT OF
PRESENTATIONS.
AND THIS IS WHY IT'S IMPORTANT
TO MEET IN PERSON.
I SPEAK TO PEOPLE ON ZOOM, WE
HAVE VERY GOOD DISCUSSIONS.
WHAT I DID FOR LAST SESSION WE
HEAR FROM NIH INSTITUTES,
REPRESENTATIVES WHICH SPEAK
ABOUT PROGRAMS, WHAT'S BEEN DONE
IN 2023.
WE HAVE TIME FOR DISCUSSIONS.
WE'LL BEGIN WITH PRESENTATION BY
BILL DUNTY.
>> FOR THOSE NEW ON THE
COMMITTEE I'M BILL DUNTY, NIAAA
RESEARCH COORDINATOR ASKED TO
PROVIDE SUMMARY OF ACTIVITIES
OVER FISCAL YEAR 2023.
I WANT TO BEGIN WITH SOME SAD
NEWS THAT OUR FORMER COLLEAGUE
AND FRIEND DR. DALE HERELD
PASSED AWAY ON FRIDAY, APRIL 26,
AFTER A LONG ILLNESS.
DALE WAS A PROGRAM OFFICER IN
DIVISION OF METABOLISM AND
HEALTH EFFECTS FOR OVER A
DECADE, MANAGED THE FASD
RESEARCH PORTFOLIO AND SERVED AS
PROJECT SCIENTIST FOR MANY
NIAAA-FUNDED CONSORTIA,
INCLUDING PASS NETWORK, CIFASD
CONSORTIUM, A REPRESENTATIVE ON
MANY COMMITTEES INCLUDING THIS
COMMITTEE FOR MANY YEARS,
CONTRIBUTOR TO THE FASD FIELD IN
MANY WAYS.
DALE WILL BE DEEPLY MISSED BY
HIS COLLEAGUES, FRIENDS, AND
FAMILY.
NIAAA'S MISSION TO DISSEMINATE
FUNDAMENTAL KNOWLEDGE ABOUT
EFFECTS ON ALCOHOL ON HUMAN
HEALTH AND WELL-BEING.
TO IMPROVE TO DIAGNOSIS,
PREVENTION AND TREATMENT OF
ALCOHOL-RELATED PROBLEMS ACROSS
THE LIFESPAN.
NIAAA HAS SUPPORTED FOUR MAIN
AREAS OF FASD RESEARCH, THROUGH
OUR GRANTS AND OTHER ACTIVITIES,
WE SUPPORT RESEARCH IN FASD
ETIOLOGY, PREVENTION,
INTERVENTIONS, DIAGNOSIS.
OVER THE LAST FIVE YEARS NIAAA'S
RESEARCH AN TRAINING BUDGET HAS
BEEN ON THE RISE WITH $458
MILLION BEING ALLOCATED IN
FISCAL YEAR 2023.
AWARDS TO FASD RESEARCH OVER THE
SAME FIVE YEARS REMAINED
RELATIVELY STEADY, MAKING UP 7%
OF OUR INSTITUTE'S ENTIRE
RESEARCH AND TRAINING BUDGETP
6.6% IN FISCAL YEAR IN 2023 ON
THE TABLE BELOW, THAT REPRESENTS
A LITTLE OVER A $30 MILLION
INVESTMENT TO SUPPORT 96 FASD
RESEARCH GRANTS IN TOTAL.
AND OF THOSE 96, 16 WERE NEW
AWARDS MADE IN FISCAL YEAR 2023.
NOW, NIAAA SUPPORTS FASD
RESEARCH AT INSTITUTES ACROSS
THE UNITED STATES, AND HERE I'M
SHOWING A MAP OF THOSE
INSTITUTES WITH FASD AWARDS IN
FISCAL YEAR 2023.
I DO WANT TO DRAW YOUR ATTENTION
TO THE COLOR CODING ON THE MAP.
THE DARKER THE BLUE, THE LARGER
THE TOTAL COST AWARDED AT A
GIVEN INSTITUTE.
WHAT I'M INDICATING HERE, WHAT
I'VE CALLING HUBS, DEFINED AS
INSTITUTES HAVING MORE THAN FOUR
FASD-RELATED GRANTS, AND THOSE
INCLUDE UNIVERSITY OF CALIFORNIA
SAN DIEGO, WITH FOUR AWARDS, SAN
DIEGO STATE UNIVERSITY WITH
FIVE, TEXAS A & M WITH SEVEN,
UNIVERSITY OF NEW MEXICO WITH
15, NOW THAT INCLUDES THEIR P50
CENTER GRANT SO THAT ACCOUNTS
FOR THE HIGH NUMBER.
UNIVERSITY OF NORTH CAROLINA
WITH FIVE, AND BINGHAMTON
UNIVERSITY IN NEW YORK WITH FIVE
AS WELL.
NOW, OF THE 16 NEW AWARDS I
MENTIONED IN FISCAL YEAR 2023,
THEY FALL INTO THE FOUR MAIN
CATEGORIES OF FASD RESEARCH I
MENTIONED ON MY FIRST SLIDE.
THIS TABLE WAS JUST AN EXAMPLE
OF SOME OF THE GRANTS THAT ARE
LOOKING AT THE AREA OF FASD
ETIOLOGY, THOSE STUDIES INCLUDE
GRANTS LOOKING AT THE GENES THAT
MAY UNDERLIE SUSCEPTIBILITY, THE
ROLE OF OXIDATIVE STRESS
RESPONSE IN THE SEVERITY OF
NEUROLOGICAL DISORDERS, IN
ADULTS WITH PAE, STUDIES TO LOOK
AT DNA METHYLATION AND HOW THAT
MIGHT LINK PRENATAL EXPOSURE TO
INCREASED RISK FOR DEPRESSION
LATER IN LIFE.
AND STUDIES LOOKING AT IMPACT OF
PRENATAL ALCOHOL EXPOSURE AND
OPIOID CO-EXPOSURE ON THE
DEVELOPING BRAIN.
NOW, IN ITEMS OF -- IN TERMS OF
INTERVENTIONS WE ARE LOOKING AT
WAYS WITH THIS AWARD ON HOW
MUSIC TRAINING MAY MITIGATE SOME
BEHAVIORAL DEFICITS SEEN IN
CHILDREN WITH FASD, AN AWARD
LOOKING TO DEVELOP
PERSON-CENTERED PLANNING
INTERVENTION FOR ADOLESCENTS AND
ADULTS WITH FASD.
IN THE AREA OF PREVENTION, WE
HAVE INVESTIGATORS ATTEMPTING TO
OPTIMIZE A NEW DIGITAL RISK
INTERVENTION, TAILORED TO NATIVE
COMMUNITIES, WITH THE HOPE OF
LOWERING ALCOHOL EXPOSED
PREGNANCY RATES.
AS WELL AS FELLOWSHIP LOOKING AT
CONTRIBUTION OF STRESS, SOCIAL
SUPPORT AND BRAIN FUNCTION ON
ALCOHOL MISUSE IN WOMEN.
I DO WANT TO POINT OUT THAT THE
FIRST THREE AWARDS HERE USE THE
R61 GRANT MECHANISM, AND THOSE
WERE AWARDS THAT WERE SUBMITTED
IN RESPONSE TO A SPECIFIC NOTICE
OF FUNDING OPPORTUNITY
ANNOUNCEMENT THAT NIAAA PUT OUT.
THAT I'LL MENTION IN A
SUBSEQUENT SLIDE.
WE ALSO HAVE STUDIES THAT SPAN
MULTIPLE AREAS.
SO, THIS IS AN EXAMPLE OF AN R01
LOOKING AT BOTH FASD ETIOLOGY
AND INTERVENTION, AND IN
PARTICULAR THEY ARE USING
ADVANCED BRAIN IMAGING TO KIND
OF UNDERSTAND, TO BETTER
UNDERSTAND NEUROPROTECTIVE
EFFECTS OF CHOLINE, IN THIS CASE
CHOLINE MATERNAL CHOLINE
SUPPLEMENTATION DURING
PREGNANCY, HOW THAT MAY PROTECT
THE DEVELOPING FETUS.
SO, TO LEARN MORE ABOUT THESE
AWARDS AND THE MANY OTHERS THAT
WE FUND I SUGGEST GOING TO THE
NIH REPORTER WEBSITE AND
SELECTING FASD UNDER THE NIH
SPENDING CATEGORY PULLDOWN.
SO WE HAVE MADE PROGRESS IN
AREAS, I THINK WE ALSO
UNDERSTAND THAT CHALLENGES
REMAIN IN THIS FIELD.
AND SO NIAAA BELIEVES MORE
RESEARCH STUDIES ARE NEEDED IN
THE FOLLOWING AREAS, TO PREVENT
ALCOHOL EXPOSED PREGNANCIES, TO
IDENTIFY EARLIER NEWBORNS AND
CHILDREN AFFECTED BY PAE TO
DEVELOP AND BETTER IMPLEMENT
INTERVENTIONS ACROSS THE
LIFESPAN, TO BETTER UNDERSTAND
IMPACT OF PAE ON RISK FOR
CHRONIC DISEASES LATER IN LIFE,
STUDIES TO REDUCE FASD-RELATED
SIGMA TO IMPROVE PREVENTION
EFFORTS, AS WELL AS ADDRESSING
BARRIERS TO IMPROVE AWARENESS OF
FASD AS A DEVELOPMENTAL
DISORDER.
FINALLY, TO BETTER UNDERSTAND
IMPACT OF ALCOHOL ON PLACENTA
AND GUT MICROBIOME FUNCTION.
NIAAA HAS PUBLISHED OR
PARTICIPATES IN SEVERAL NOTICES
OF FUNDING OPPORTUNITIES, TO
SOLICIT RESEARCH IN THE AREA OF
PREGNANCY AND FASD, FIRST ONE
LISTED HERE IN THE TABLE WAS ONE
I MENTIONED TWO SLIDES EARLIER,
WAS A SOLICITATION WE PUBLISHED
LOOKING FOR NOVEL PREVENTION AND
INTERVENTION APPROACHES, FOR
FASD ACROSS THE LIFESPAN.
AND I'M HAPPY TO REPORT THAT WE
WERE ABLE TO RENEW THIS SERIES
OF FUNDING OPPORTUNITIES
ANNOUNCEMENTS FOR ANOTHER THREE
YEARS.
WE PARTICIPATE LOOKING AT
EMERGING ISSUES OF COVID AS
RELATES TO THE HEALTH AND
WELL-BEING OF WOMEN, CHILDREN,
AND INDIVIDUALS WITH PHYSICAL
AND INTELLECTUAL DISABILITIES.
A NOTICE TO BETTER IMPLEMENT
SCREENING, BRIEF INTERVENTION
AND REFERRAL TO TREATMENT AND
PREVENTION FOR ALCOHOL, TOBACCO,
OTHER DRUG USE IN ADULTS WITH
HEALTH DISPARITIES.
A NOTICE TO ADDRESS GAPS IN
EVIDENCE-BASED SCREENING, AND
THAT INCLUDE SCREENING FOR
ALCOHOL USE IN PREGNANCY AS WELL
AS SCREENING FOR FASD, AND A
NOTICE ON SECONDARY DATA
ANALYSES FOR EXISTING ALCOHOL
DATASETS.
IF YOU WANT TO LEARN MORE, YOU
CAN VISIT GRANTS.NIH.GOV FOR
DETAILS.
I WANT TO MENTION NIAAA HAS
SEVERAL RESOURCES RELATED TO
ALCOHOL AND PREGNANCY ON OUR
WEBSITES, IN 2023 WE UPDATED OUR
FACT SHEET ON FASD, AS WELL AS
RELEASED A NEW VERSION OF THE
BROCHURE ALCOHOL AND YOUR
PREGNANCY WHICH IS A GUIDE FOR
EXPECTING MOTHERS TO GET ANSWERS
TO FACS AROUND ALCOHOL USE
DURING PREGNANCY AND HAVE
RECENTLY PUBLISHED A SHORT-TAKES
WITH NIAAA VIDEO TO HELP EXPLAIN
WHAT IS FASD.
THESE AND OTHER RESOURCES CAN BE
FOUND AT THE URL LISTED ON THE
SLIDE.
IN 2023 WE LAUNCHED A SERIES OF
REVIEW ARTICLES, PUBLISHED IN
THE ALCOHOL RESEARCH CURRENT
REVIEWS, THIS WAS A SERIES TOPIC
SPECIFICALLY ON FASD, TOPICS
INCLUDED THE IMPACT OF LOW AND
MODERATE PRENATAL ALCOHOL
EXPOSURE ON NEURODEVELOPMENTAL
OUTCOMES, BY GRETCHEN BANDOLI
AND COLLEAGUES, REVIEW ON
BIOMARKERS AND SCREENING TOOLS
TO IDENTIFY PAE BY JULIE KABLE
AND OUR OWN DR. JONES, AND
PREVENTION REVIEW ON REDUCING
PAE AND INCIDENCE OF FASD BY
GRACE CHANG.
WE HOPE TO ADD TWO MORE REVIEW
ARTICLES THIS YEAR, AND ALL THE
ARTICLES ARE FREELY AVAILABLE AT
THE URL ON THE SLIDE.
I WANT TO MENTION NIAAA DOES
PARTICIPATE IN MANY NIH-WIDE
PEDIATRIC INITIATIVES INCLUDING
BRAIN COGNITIVE STUDY,
GABRIELLA MILLER PROGRAM, ECHO
PROGRAM, AS WELL AS HEALTHY
BRAIN AND CHILD DEVELOPMENT
STUDY WHICH YOU'LL HEAR MORE
ABOUT IN NIDA'S UPDATE.
WITH THAT I THANK YOU FOR YOUR
ATTENTION.
MORE INFO ON OUR RESEARCH
PROGRAM CAN BE FOUND ON OUR
WEBSITE.
THANK YOU.
>> THANK YOU VERY MUCH.
NEXT PRESENTATION IS FROM NIMH.
>> THANK YOU.
THANK YOU FOR THE OPPORTUNITY TO
SPEAK AND JOIN THIS MEETING
TODAY.
I'M CHRIS SARAMPOTE, DIVISION OF
TRANSLATIONAL RESEARCH AT
NATIONAL INSTITUTE OF MENTAL
HEALTH.
I WANT TO ACKNOWLEDGE MY
COLLEAGUE DR. JULIE ZEHR, RISK
AND RESILIENCE IN CHILDREN, WE
SPEND TIME AFTER MEETINGS TODAY
THINKING HOW WE MIGHT PUT OUR
HEADS TOGETHER AND BRING NIMH'S
RESOURCES TO THE TABLE TO HELP
ANSWER QUESTIONS THAT ARE
RELEVANT TO BOTH MENTAL HEALTH
AND ALSO TO FASD.
I ALSO WANT TO ACKNOWLEDGE MY
COLLEAGUES HERE TODAY AT OTHER
INSTITUTES, AND OTHER AGENCIES,
WHO DO A LOT OF HEAVY LIFTING
WHEN IT COMES TO RESEARCH THAT
RELATES TO MENTAL ILLNESS AND SO
IT'S WITH MUCH APPRECIATION THAT
I HAVE A CHANCE TO BE IN THE
ROOM WITH YOU AND HEAR ABOUT
YOUR WORK.
SO THANK YOU FOR SHARING TODAY.
THIS IS KNOWN TO MANY PEOPLE,
NIMH IS LEAD FEDERAL AGENCY FOR
RESEARCH ON MENTAL DISORDERS
SPANNING THE PIPELINE FROM BASIC
STUDIES OF MECHANISMS,
TRAJECTORIES OF MENTAL ILLNESS,
INTERVENTION DEVELOPMENT, IMPACT
OF INTERVENTIONS ON ALLEVIATING
THE BURDEN OF MENTAL ILLNESS,
COMMITTED TO DELIVERY MODELS.
INDEED PREVENTION AND TREATMENT
OF MENTAL ILLNESS IS PART OF THE
CORE MISSION OF NIMH, NEED FOR
EFFECT ELIMINATED CARE REMAINS
CRITICAL.
UNFORTUNATELY THERE ARE A NUMBER
OF FOLKS FOR WHICH SERVICES
DON'T REACH AND MANY FOLKS LEFT
OUT OF EFFECTIVE TREATMENT AND
AS WE'VE HEARD INDIVIDUALS WITH
FASD MAY BE AT PARTICULAR RISK
AS WELL.
THESE HAVE BEEN EXACERBATED BY
NUMEROUS FACTORS INCLUDING
PANDEMIC, DISPARITIES OF MENTAL
HEALTH CARE AND GROUPS LIKE FASD
WHO MAY BE PARTICULARLY IMPACTED
BY MENTAL ILLNESS.
INDIVIDUALS WITH FASD ARE
INCREASED RISK FOR PSYCHOLOGICAL
DISORDERS, SUCH AS ADHD,
INCREASED RISK OF SUICIDAL
BEHAVIOR.
PRENATAL ALCOHOL EXPOSURE IS
ASSOCIATED WITH NEGATIVE MENTAL
HEALTH OUTCOMES IN CHILDREN,
PSYCHIATRIC SYMPTOMS ARE
ASSOCIATED WITH PRENATAL ALCOHOL
USE SUCH AS EMOTION
DYSREGULATION, IMPULSIVITY,
IMPAIRED EXECUTIVE FUNCTIONING,
AND MAY RESPOND DIFFERENTLY TO
STANDARD PSYCHIATRIC TREATMENTS,
INDEED MANY OF THESE SYMPTOMS
THAT I JUST STATED ARE DEFINED,
BEHAVIORAL PHENOTYPE OF FASD.
UNDERSTANDING THESE
RELATIONSHIPS BETWEEN ALCOHOL
EXPOSURE, BEHAVIOR, PSYCHIATRIC
SYMPTOMS AND OTHER VARIABLES
LIKE ENVIRONMENT WE CAN BETTER
UNDERSTAND DEVELOPMENTAL
TRAJECTORIES FOR CHILDREN WITH
FASD, AND DETERMINE BETTER HOW
AND WHEN TO INTERVENE TO PROMOTE
HEALTH.
MORE WORK IS NEEDED TO BETTER
UNDERSTAND HOW EXISTING MENTAL
HEALTH SERVICES ARE UTILIZED BY
AND BENEFIT PEOPLE WITH FASD,
PUBLIC PARTNERS MADE IT CLEAR
OPTIONS WERE LIMITED, PROVIDERS
UNDERTRAINING IN FASD AND NEEDS
CHANGES SIGNIFICANTLY OVER THE
LIFESPAN.
A NUMBER OF FOLKS SIMILARLY
AREN'T HEARD, MAYBE YOU'RE
LUMPED INTO OTHER GROUPS, GROUPS
WITH DEVELOPMENTAL DISORDERS,
WITH ADHD, THAT AREN'T TRULY
MEETING YOUR TRUE BEHAVIORAL AND
MENTAL HEALTH NEEDS.
A COUPLE THINGS I HEARD EARLIER
TODAY THAT ARE IMPORTANT,
PARTICULARLY FOR US IN NIMH TO
UNDERSTAND, THAT IS THE IDEA
THAT FASD PROMOTE FOR MOST IS AN
INVISIBLE DISORDER LIKE MANY
MENTAL DISORDERS, EVEN IN
RESEARCH CHILDREN WITH FASD ARE
INVISIBLE, EITHER SCREENED OUT
OF THE STUDIES OR THEY ARE
INCLUDED IN STUDIES BUT MAY BE
MASQUERADING AS DIFFERENT
DISORDER AND WE'RE NOT TRULY
UNDERSTANDING THE UNIQUE
ETIOLOGICAL AND TRAJECTORY
MECHANISTIC TRAJECTORY AND HOW
THEY ARE IMPORTANT.
THE OTHER THING I WOULD ADD TO
THIS IDEA THAT THE CHALLENGES
REQUIRE EFFORTS FROM MANY.
MANY OF MIGHT HAVE COLLEAGUES
ARE CARRYING A LOT OF HEAVY
LIFTING, DOING A LOT OF HEAVY
LIFTING, SO I REALLY ICCFASD AND
LOOKING FORWARD TO PARTNER AND
ADDRESS THIS PROBLEM.
NIMH CURRENTLY DOES NOT FUND
RESEARCH PROJECT GRANTS ON
MENTAL ILLNESS BUT WE DO
PARTNER.
AS BILL MENTIONED, DESCRIBED IN
MORE DEPTH BY NIDA, HEALTHY
BRAIN AND CHILD DEVELOPMENT
STUDY FOR WHICH NIMH DOES
PARTICIPATE AS WELL.
AGAIN, THANK YOU FOR THE
OPPORTUNITY TO PRESENT AND LEARN
FROM YOU TODAY, I LOOK FORWARD
TO HEARING MORE.
THANK YOU.
>> THANK YOU, CHRIS.
NOW PRESENTATIONS, TWO RECORDED
PRESENTATIONS BY MEMBERS WHO ARE
ONLINE ON ZOOM NOW, WE'LL SEE
THESE PRESENTATIONS, PLEASE PUT
IT ON.
THEN WE'LL HAVE DISCUSSION AFTER
PRESENTATIONS.
>> I'M JANANI PRABHAKAR FROM
NIDA.
I AM THRILLED TO BE HERE WITH
YOU TODAY, VIRTUALLY, I'M SORRY
I'M NOT ABLE TO THERE BE IN
PERSON BUT HOPEFULLY I WILL BE
IN ABLE TO NEXT TIME.
I'M HAPPY TO PROVIDE A REPORT OF
NIDA'S ACTIVITIES IN 2023.
I WILL START WITH AN UPDATE OF
OUR HBCD STUDY, MANY OF YOU HERE
HAVE LIKELY HEARD ME TALK ABOUT
THIS STUDY.
I'M THE PROGRAM OFFICER FOR
HBCD.
REMINDER, PHASE 2 WAS LAUNCHED
IN 2021, WITH GOAL TO RECRUIT
APPROXIMATELY 7,200 PREGNANT
PERSONS IN SECOND TRIMESTER,
FOLLOW THEM AND THEIR CHILD FOR
TEN YEARS.
OBJECTIVE IS TO ESTABLISH
NEURODEVELOPMENTAL TRAJECTORIES,
DETERMINE HOW SUBSTANCE EXPOSURE
AND OTHER ENVIRONMENTAL FACTORS
AFFECT THOSE TRAJECTORIES.
ON THE LEFT YOU'LL SEE OUR 27
RESEARCH SITES, WITH LOCATIONS
OF OUR ADMINISTRATIVE
COORDINATING CENTER AND DATA
COORDINATING CENTER THAT MAKE UP
THE CONSORTIUM.
ON THE RIGHT IS SAMPLING DESIGN,
50% IS FROM THE GENERAL
POPULATION OF BIRTHING WOMEN IN
THE U.S.
WHICH WILL ALLOW US TO CHART
NEURODEVELOPMENTAL TRAJECTORIES.
A KEY ASPECT OF THE STUDY IS TO
UNDERSTAND ROLE OF SUBSTANCE USE
EXPOSURE IN NEURODEVELOPMENT,
25% WILL REFLECT THOSE WHO HAVE
REPORT OR HAVE BIOMARKERS OF
SUBSTANCE USE DURING PREGNANCY.
ANOTHER 25% WILL REFLECT WOMEN
SIMILAR TO THOSE WHO USE
SUBSTANCES DURING PREGNANCY BUT
IN ORDER TO BALANCE POTENTIAL
CONFOUNDERS AND ANSWER QUESTIONS
ABOUT THE INFLUENCE OF OTHER
TYPES OF EXPOSURES ON
DEVELOPMENT.
I APOLOGIZE THAT MY HEAD BLOCKS
OFF 25%.
SLIDES WILL BE SHARED SO PLEASE
TAKE A LOOK WHEN YOU HAVE THEM.
WE'VE ESTABLISHED TARGETS BASED
ON CHARACTERISTICS AROUND THE
CIRCLE HERE, BALANCED TO BE
REPRESENTATIVE TO THE U.S.
POPULATION OF BIRTHING WOMEN.
AND ON SITE-SPECIFIC CATCHMENT
AREAS.
I'VE OUTLINED GENERAL TIMELINE
FROM ENROLLMENT TO AGE 4, FIVE
IN-PERSON VISITS OVER FOUR
YEARS, THREE REMOTE
OPPORTUNITIES TO PROVIDE
ADDITIONAL DATA.
MUCH ATTENTION PAID TO WOMEN
LIMITING PARTICIPANT BURDEN
WHILE STILL AIMING TO COLLECT
RICH INFORMATION.
YOU'LL SEE DOMAINS OF INTEREST
LISTED OVER HERE, AND WHEN THEY
OCCUR AT EACH OF OUR DIFFERENT
STUDY VISITS.
STUDY BEGAN ENROLLMENT IN JULY
2023, AND WE'RE WELL ON OUR WAY
TOWARD OUR ENROLLMENT GOALS, IN
TERMS OF OUR TOTAL ENROLLMENT.
WE'RE MONITORING SITE PROGRESS
IN COLLABORATION WITH OUR
ADMINISTRATIVE COORDINATING
CENTERS, DASHBOARDS SET UP, SOME
IN PROGRESS STILL, BUT THAT WILL
ALLOW US TO LOOK AT SITE
SPECIFIC PROGRESS, WHICH
INCLUDES SUBSTANCE USE IN THE
STUDY IN BIRTHING WOMEN.
WE'RE FOLLOWING THIS CLOSELY AS
YOU CAN SEE, SOME DATA HERE, SO
WHILE WE'RE SEEING RELATIVELY
LOW LEVELS OF OPIOID USE, SO
FAR, YOU'LL SEE WE HAVE FAIRLY
SUBSTANTIAL NUMBER OF PREGNANT
PERSONS WHO USE ALCOHOL ON ITS
OWN AND CO-USE.
THESE FIGURES REFLECT DATA FROM
BLOODSPOT CARDS ON THE LEFT.
TIMELINE ON THE BOTTOM RIGHT
OVER HERE.
WE HOPE TO TRIANGULATE METRICS,
REACHING SUBSTANCE USE GOALS
THROUGH SELF-REPORT AND BY
SPECIMEN COLLECTION DURING
PREGNANCY.
IN ADDITION, I WANT TO HIGHLIGHT
SEVERAL OTHER INITIATIVES THAT
MIGHT BE RELEVANT TO ALL OF YOU.
IN 2023 WE COLLABORATED FOR AN
RFA UNDERSTANDING INFLUENCE OF
OPIOID EXPOSURE.
NIDA WORK SUPPORTED THROUGH THIS
RFA UTILIZED MRI, ULTRASOUND AND
MACHINE LEARNING METHODS TO
ANSWER QUESTIONS ABOUT OPIOID
EXPOSURES IMPACT ON MATERNAL
IMMUNE ACTIVATION AND POTENTIAL
ASSOCIATION TO FETAL IMMUNE
DYSREGULATION TO CREATE
SIGNALING, INFLAMMATION, EARLY
NEURO COGNITIVE DEVELOPMENT AND
MORE.
YOU'LL SEE THE FUNDED NIDA
GRANTS LISTED HERE.
WE'RE VERY EXCITED ABOUT THE
WORK SUPPORTED THROUGH THIS
NOFO, HOW WE CAN PUSH THE
ENVELOPE ON USING NOVEL
TECHNOLOGIES, MULTI-MODAL TO
UNDERSTAND PLACENTA AND FETAL
BRAIN OF THE COMPREHENSIVE
COHESIVE BIDIRECTIONAL ECOSYSTEM
TO ALLOW US TO DELINEATE
BIOLOGICAL MECHANISMS IN UTERO
THAT IMPACT TRAJECTORIES
POST-BIRTH.
I WOULD LIKE TO HIGHLIGHT OUR
TRANSLATING SOCIOENVIRONMENTAL
INFLUENCE NOFO CONSIDERING
APPLICATIONS THAT WERE REVIEWED
IN SPRING 2024.
IT AIMS TO SUPPORT PLANNING
GRANTS, AIMING TO UNCOVER
MECHANISMS, MEDIATING IMPACT OF
EARLY LIFE SOCIAL ENVIRONMENT ON
NEUROBEHAVIORAL DEVELOPMENT
USING RAT MODELS, LIFESPAN OF A
RAT LONG TERM TRAJECTORY CAN BE
ESTABLISHED TO UNDERSTAND HOW
EARLY LIFE EXPOSURES IMPACT
LONG-TERM DEVELOPMENT, MUST BE
TRANSLATABLE AND DEVELOP
RELEVANT TO HUMANS.
THE PROJECT TRANSINDA, THE
PROJECT FUNDED WILL REFLECT
COORDINATED EFFORT ACROSS
MULTIPLE PLANNING GRANTS TO
ESTABLISH A FOUNDATION TO
ACHIEVE VALID CROSS-SPECIES
MODELS OF SOCIOENVIRONMENTAL
RISK FACTORS.
AND I SHOW LISTED OUR LEAD FOR
THIS INITIATIVE, HOLLY MOORE, I
WILL MAKE SURE TO SHARE HER
CONTACT INFORMATION WITH YOU
ALL.
ANOTHER TESTING INNOVATIVE
MODELS OF SERVICE DELIVERY TO
ADDRESS NEEDS FOR MOTHERS
EXPERIENCING OUD IN PREGNANCY
AND POSTPARTUM PERIOD, NOSI HAS
EMPHASIS ON REDUCING MORTALITY,
PROVIDING RECOVERY ORIENTED
FAMILY-CENTERED CARE, THE WORK
FOUNDED WILL MEASURE RELEVANT
OUTCOMES, RELEVANT TO SERVICE
DELIVERY, MATERNAL OUTCOMES,
FAMILY OUTCOMES, INFANT
OUTCOMES.
WHILE THE NOSI ITSELF HAS
EXPIRED, I WANT TO POINT YOU ALL
TO TWO RFAs AT THE TOP,
ACCEPTING APPLICATIONS IN THIS
AREA.
I'VE ALSO HIGHLIGHTED MY CO-REP,
PROGRAM REPRESENTATIVE FOR THIS
WORK.
I WOULD LIKE TO HIGHLIGHT
ANOTHER NOFO, GROWTH,
DEVELOPMENT AND FUNCTIONING OF
PLACENTA IN PREGNANT INDIVIDUALS
AND MATERNAL OUTCOMES, THIS
PROGRAM IS LED BY SUNILA NAIR,
APPLICATION DUES THIS YEAR.
IF YOU HAVE ANY QUESTIONS YOU
CAN SEND THEM TO SUNILA OR TO
ME, AND I CAN ROUTE IT OVER TO
SUNILA.
I'LL DRAW YOUR ATTENTION TO
NIDA'S WOMEN AND SEX AND GENDER
RESEARCH WORKGROUP, THE MISSION
IS TO PROMOTE CAREERS AND WOMEN
SCIENTIST, AND CONDUCT,
TRANSLATION, DISSEMINATION OF
RESEARCH ON SEX AND GENDER
DIFFERENCES IN PHARMACOLOGY AND
SOCIOECONOMIC DETERMINANTS OF
SUBSTANCE USE DISORDERS AND
RESPONSES TO SUBSTANCES OF USE,
OBJECTIVES ARE TO DEVELOP NIDA'S
WOMEN AND SEX AND GENDER
RESEARCH AGENDA AND PRIORITIES,
CULTIVATE AND STRENGTHEN
PARTNERSHIPS WITHIN NIDA, ACROSS
NIH AND BEYOND, PROVIDE AN
OPPORTUNITY FOR EARLY CAREER
INVESTIGATORS TO PRESENT THEIR
RESEARCH, I'LL TALK ABOUT THAT
IN A FEW SLIDES.
AS I END, I'M GOING TO BEGIN
WITH HIGHLIGHTING A SET OF
NOFOs, NIDA WGRG SIGNED ON,
PLEASE TAKE A LOOK ONCE YOU
RECEIVE THE SLIDES.
I'D LIKE TO END BY HIGHLIGHTING
EARLY CAREER INVESTIGATOR
SEMINAR SERIES, THE GOAL TO
SPOTLIGHT EARLY CAREER
INVESTIGATORS AND RESEARCH
THROUGH PRESENTATIONS AND
SHARING OF RESOURCES.
YOU CAN SEE A LIST OF OUR
SPEAKERS OVER HERE, IF YOU HAVE
ANY INTEREST IN ATTENDING THESE
SERIES, OR THIS SERIES, PLEASE
LET ME OR KEISHER KNOW.
I'LL END MY PRESENTATION.
THANK YOU FOR YOUR TIME.
I LOOK FORWARD TO DISCUSSION
THAT I BELIEVE WILL START
SHORTLY.
THANK YOU SO MUCH.
>> THANK YOU SO MUCH.
THANK YOU.
AND WHEN WE GET NEXT VIDEO
PRESENTATION, I WANTED TO LET
EVERYBODY KNOW THIS PRESENTATION
IS PRE-RECORDED BUT MEMBERS ARE
LIVE ON ZOOM SO WE'RE GOING TO
HEAR FROM THEM AND ALL CAN ASK
QUESTIONS AND MAKE YOUR
COMMENTS, BE READY WITH
QUESTIONS TO ASK OUR MEMBERS.
NEXT PRESENTATION, LAST BUT NOT
LEAST PRESENTATION, IT WILL BE
NICHD.
>> HELLO, I'M MEGAN O'NEILL, A
MEDICAL CENTER IN THE
DEVELOPMENTAL DISABILITIES
BRANCH AT THE EUNICE KENNEDY
SHRIVER NATIONAL INSTITUTE OF
CHILD HEALTH AND HUMAN
DEVELOPMENT, NICHD.
I'M GLAD TO HAVE THE OPPORTUNITY
TO TALK BRIEFLY TODAY ABOUT THE
INTERAGENCY COORDINATING
COMMITTEE OF FETAL ALCOHOL
SPECTRUM DISORDERS ABOUT SOME
NICHD ACTIVITIES WITH RELEVANCE
TO FASD.
FIRST I'D LIKE TO GIVE A BRIEF
OVERVIEW OF NICHD AND RESEARCH
WE SUPPORT.
OUR INSTITUTE IS NOTABLE FOR
BREADTH OF MISSION, FUNDING
RESEARCH ACROSS MULTIPLE AREAS
OF SCIENCE, ENCOMPASSING A BROAD
RANGE OF CHILD HEALTH RESEARCH
INCLUDING MY BRANCH ON
INTELLECTUAL AND DEVELOPMENTAL
DISABILITIES, RESEARCH
ADDRESSING PRE, PERI, NEONATAL
HEALTH, PREGNANCY AND MATERNAL
HEALTH, MULTIPLE ASPECT IT'S OF
REPRODUCTIVE HEALTH INCLUDING
AREAS HERE.
THE NICHD HOUSE NATIONAL CENTER
FOR MEDICAL REHABILITATION
RESEARCH, WHICH SUPPORTS
REHABILITATION RESEARCH ACROSS
THE LIFESPAN.
THE NIAAA IS THE LEAD INSTITUTE
HE ON FASD.
VERY FEW AWARDS ARE FOCUSED ONLY
ON ALCOHOL USE IN PREGNANCY OR
CHILDREN WITH FASD.
WE SUPPORT BASIC SCIENCE
RESEARCH ON EFFECT OF PRENATAL
EXPOSURE ON ASKING ON ASKING
CELL -- USING CELLULAR OR ANIMAL
MODELS, AND WE ADDRESS POLY
SUBSTANCE USE.
A FEW WORDS ARE MORE SPECIFIC TO
FASTED IN JUST A BIT.
BEYOND THIS IT'S WORTH NOTING
THE NICHD PROVIDES SUBSTANTIAL
SUPPORT FOR RESEARCH INVOLVING
CHILDREN WITH INTELLECTUAL AND
DEVELOPMENTAL DISABILITIES, WE
HOPE THIS RESEARCH BROADLY
BENEFITS ALL CHILDREN WITH
DEVELOPMENTAL DISABILITIES
INCLUDING THOSE WITH FASD.
FINALLY, NICHD PARTICIPATE IN A
NUMBER OF TRANS-NIH
COLLABORATIONS THAT MAY
ULTIMATELY INFORM THE FIELD OF
FASD RESEARCH, WHICH I WILL TALK
ABOUT MORE NEXT.
I WANTED TO FIRST QUICKLY
HIGHLIGHT TWO TRANS-NIH
COLLABORATIONS WERE NICHD BEING
VERY ACTIVE, IMPROVE INITIATIVE
AND ABLEISM IN MEDICINE AND
RESEARCH.
IMPROVE INITIATIVE IS A
TRANS-NIH INITIATIVE AIMED AT
REDUCING MATERNAL MORBIDITY AND
MORTALITY.
NICHD IS PLAYING A KEY ROLE IN
HELPING LEAD THIS INITIATIVE
WERE ADDITIONAL SUPPORT FROM
MULTIPLE INSTITUTES, CENTERS,
OFFICES.
THIS INITIATIVE SUPPORTS
RESEARCH TO REDUCE PREVENTIBLE
CAUSES OF MATERNAL DEATH AND
IMPROVE HEALTH FOR WOMEN BEFORE,
DURING, AFTER DELIVERY,
INCLUDING CONTRIBUTING HEALTH
CONDITIONS AND ASSOCIATE
FACTORS.
DOES NOT NECESSARILY FUND IN
ISOLATION, MANY ASPECTS ARE
BEING INVESTIGATED BY
RESEARCHERS THROUGH THIS
INITIATIVE.
NICHD HAS ALSO BEEN INVOLVED IN
THE TRANS-NIH COLLABORATION TO
BETTER UNDERSTAND AND COMBAT
ABLEISM IN MEDICINE AND
RESEARCH, REFERRING TO THE
ASSUMPTION THAT PERSONS WITH
DISABILITIES ARE INFERIOR OR
INADEQUATE LEADING TO
DISCRIMINATION AND SOCIAL
PREJUDICE.
ABLEISM LED TO HISTORICAL
UNDERREPRESENTATION OF PEOPLE IN
RESEARCH, SOMETHING WE'VE BEEN
TRYING TO ADDRESS.
ONE YEAR AGO NICHD'S NATIONAL
CENTER FOR MEDICAL
REHABILITATION RESEARCH
SPONSORED A TWO-DAY WEBINAR
FOCUSING ON AWARENESS IN
RESEARCH OPPORTUNITIES TO
MITIGATE EFFECT IN CLINICAL CARE
AND BIOMEDICAL AND BEHAVIORAL
ENTERPRISE, AVAILABLE FOR
VIEWING FOR NIH VIDEOCAST WITH
LINKS ON THIS SLIDE.
THESE CONVERSATIONS ABOUT
DISABILITY REPRESENTATION LED
THE NIH TO RECENTLY RECOGNIZE
THOSE WITH DISABILITIES AS A
HEALTH DISPARITY POPULATION.
THIS REPRESENTATIVES AGENCY-WIDE
EFFORT TO ADVANCE HEALTH EQUITY
WITH THE GOAL OF TURNING
DISCOVERIES INTO BETTER HEALTH
FOR ALL INDIVIDUALS WITH
DISABILITIES.
AT THE NICHD WE PUT FORTH A
REQUEST FOR APPLICATIONS WITH
SET-ASIDE FUNDS, UNDERSTANDING
AND MITIGATING HEALTH
DISPARITIES CAUSED BY AGEISM.
THE NIH AT LARGE HAS EXTENDED A
NOTICE OF FUNDING OPPORTUNITY
FOR HEALTH AND HEALTH CARE
DISPARITIES WITH PERSONS WITH
DISABILITIES, OPPORTUNITIES
WHICH WE HOPE FASD RESEARCHERS
WILL TAKE ADVANTAGE OF, IN THE
NEXT SEVERAL YEARS.
FINALLY I WANTED TO BRIEFLY
DISCUSS A FEW EXAMPLES OF
RESEARCH RELEVANT TO FASD THAT
HAS BEEN SUPPORTED BY NICHD
FUNDING.
THIS FIRST EXAMPLE REFERENCE -S
THE SAFE PASSAGE STUDY.
THIS STUDY WAS FUNDED THROUGH
NICHD SEVERAL YEARS AGO,
FOLLOWED OVER 10,000 WOMEN'S
PREGNANCY FROM TWO SITES IN
SOUTH AFRICA AND SEVERAL SITES
IN THE NORTHERN PLAINS REGION OF
THE UNITED STATES.
FROM 2007 TO 2015.
DATA GENERATED FROM THIS COHORT
STUDY IS A RICH RESOURCE FOR
RESEARCHERS INTERESTED IN
PRENATAL EXPOSURES, CHILD
DEVELOPMENT, PATHOLOGICAL
ASSESSMENTS OF SIDS, STILLBIRTH,
FASD.
RESEARCHERS FROM NETHERLANDS
ANALYZED DATA FROM THE SAFE
PASSAGE STUDY TO EXAMINE EFFECT
OF PRENATAL ALCOHOL EXPOSURE ON
FETAL GROWTH.
THEY FOUND THAT IMPACTS ON FETAL
GROWTH VARIED WITH TIMING OF
PRENATAL ALCOHOL EXPOSURE, WITH
MORE SIGNIFICANT EFFECT NOTED
WITH EXPOSURE DURING THE
PERICONCEPTION PERIOD AND IN THE
SECOND TRIMESTER.
THIS HIGHLIGHTS IMPORTANCE OF
COUNSELING PREGNANT WOMEN
REGARDING RISK OF ALCOHOL
EXPOSURE THROUGHOUT PREGNANCY.
ADDITIONALLY, TWO ACTIVE AWARDS
THROUGH THE NICHD ARE CURRENTLY
FOCUSING ON DOCUMENTING AND
ARCHIVING STUDY DATA FROM SAFE
PASSAGE STUDY, NICHD DATA AND
SPECIMEN HUB, DASH, AS WELL AS
CREATING BIOSPECIMEN REPOSITORY.
THESE AWARDS ARE CRUCIAL IN
ENSURING FUTURE PUBLIC
AVAILABILITY OF THIS INVALUABLE
RESOURCE TO RESEARCHERS
INTERESTED IN SECONDARY ANALYSIS
OF DATASETS ON FASD.
THE NEXT EXAMPLE ILLUSTRATES
SUPPORTS FOR STRENGTHENING
SCIENCE AROUND BIOMARKERS,
INVOLVING SCIENCE, ANIMAL MODEL
AND CLINICAL ASPECTS.
BIOMARKERS REPRESENT DEFINED
CHARACTERISTICS MEASURED AS
INDICATOR OF NORMAL OR ABNORMAL
BIOLOGICAL PROCESS, OR OF A
CONDITION OR DISEASE WHICH MAY
BE USED TO SEE HOW WELL THE BODY
RESPONDS TO A TREATMENT FOR A
DISEASE OR CONDITION.
RESEARCH TEAM AT TEMPLE
UNIVERSITY INVESTIGATED
BIOMARKERS IN FASTED WITH
FUNDING FROM NICHD AND THIS
PROJECT WAS COMPLETED A FEW
YEARS AGO AUTHORS CONTINUE TO
GENERATE PUBLICATIONS IMPORTANT
TO FASD COMMUNITY.
THE AUTHORS NOTED THAT PRIOR
RESEARCH HAS SUGGESTED A ROLE OF
DYSMYELINATION THAT SURROUNDS
NERVE CELLS IN THE BRAIN IN
DEVELOPMENT OF FASD, STUDIED LIP
LIQUID OLIGODENDROCYTES, LOWER
COMPARED TO THOSE WHO DID NOT.
THIS INDICATES LIPID BIOMARKERS
COULD BE POTENTIALLY USEFUL IN
HELPING PREDICT RISK OF FASD,
THEY MAY ALSO SERVE AS PROMISING
TARGETS FOR FUTURE THERAPEUTIC
INTERVENTIONS.
THE SAME TEAM AT TEMPLE
UNIVERSITY EXAMINE BIOMARKERS OF
AFFECTIVE DYSREGULATION,
POSTULATING THE SERATONERGIC
SYSTEMS MAY BE ALTERED.
THEY FOUND THAT MATERNAL ALCOHOL
CONSUMPTION, MATERNAL DEPRESSION
AND SSRI USE INDEPENDENTLY AND
IN COMBINATION ARE ASSOCIATED
WITH ABNORMALITIES AT mRNA AND
PROTEIN LEVELS OF MOLECULAR
LEVELS OF NEUROTRANSMITTERS FOR
SYSTEMS ASSOCIATED WITH ABNORMAL
MOOD REGULATION, COULD BE USED
TO PREDICT WHICH WILL HAVE FASD
POSTNATAL AND INCLUDE A
AFFECTIVE DYSREGULATION.
THE LAST IS A FELLOWSHIP AWARD
WITH AIMING DEVELOPING
INTERVENTION FOR TEACHERS
WORKING WITH CHILDREN WITH FASD,
GIVEN TWO TO FIVE PERCENT OF
SCHOOL AGE CHILDREN MAY HAVE
DISORDERS IT'S IMPERATIVE
TEACHERS RECEIVE TRAINING.
THIS SEEKS TO PILOT A WEBSITE
FOR TEACHERS INCORPORATING
MATERIALS ADAPTED FROM THE
FAMILIES MOVING FORWARD PROGRAM,
A VALIDATED PARENT INTERVENTION
FOR FASD.
THIS STUDY IS NOT COMPLETED SO
WE'RE AWAITING RESULTS IN
PUBLICATIONS BUT AIMS TO FILL A
GAP IN RESEARCH SPACE AND ALSO
RECOMMENDS TRAINEE AWARD TO
SUPPORT MENTORING OF A YOUNG
INVESTIGATOR IN FASD.
THAT CONCLUDES OUR SUMMARY OF
NICHD ACTIVITIES IN THE FASD
SPACE.
I THANK YOU FOR YOUR TIME AND
WELCOME ANY QUESTIONS DURING
THIS SESSION TODAY OR VIA
E-MAIL.
THANK YOU.
>> THANK YOU, WONDERFUL
PRESENTATION.
I WANT TO CLAP MY HANDS AND TELL
THAT IT'S PARTICULARLY A GREAT
PRESENTATION BECAUSE DR. O'NEILL
JUST JOINED RECENTLY, WE LOOK
FORWARD TO THE INTERVIEW.
WE HAVE ALL PEOPLE ON ZOOM IN
DISCUSSION MODE PLEASE.
WE ENCOURAGE YOU TO TURN ON YOUR
VIDEO CAMERAS AND WE ARE GOING
TO HAVE DISCUSSION ON THESE
PRESENTATIONS AND MOVE TO
DISCUSSION, CONCLUSION
DISCUSSION FOR MEETING.
WE HAVE NOW TIME TO DISCUSS.
BY NOW EVERYBODY IS TIRED BUT WE
APPRECIATE YOUR PARTICIPATION.
AND BEFORE WE DISCUSS, WHEN
EVERYBODY'S GETTING THINGS
TOGETHER, JUST TO SAY IT'S MORE
DIFFICULT TO DO ONLINE AND ZOOM,
RIGHT?
ZOOM AND AT THE SAME TIME HERE
IN PERSON, WE MISS YOU ALL ON
ZOOM NOW.
BUT WE JUST HAVE NEW REALITY,
TWO DIFFERENT ROOMS.
BACK.
TURN ON YOUR VIDEO.
HAVE YOUR QUESTIONS READY, IT'S
TIME.
THANK YOU FOR GREAT
PRESENTATIONS.
ANY QUESTIONS FROM VIDEOCAST
NOW?
>> WE HAVE ONE QUESTION.
I'M NOT SURE ANY, ANY OF US
COULD ANSWER IF YOU HAVE AN
ANSWER TO THE QUESTION FROM
SYDNEY GARDNER.
IS THERE ANY RESEARCH EXAMINING
THE ATTITUDES AND ENROLLMENT OF
PREGNANT PERSONS WHEN PROVIDED
THE OPPORTUNITY TO STAY WITH
INFANTS IN FAMILY-CENTERED
TWO-GENERATION TREATMENT.
I'M NOT AWARE OF ANY.
>> WHO WOULD LIKE TO ANSWER?
>> ANYONE ON THE VIDEOCAST?
LET'S SEE.
NO.
>> I DON'T HAVE AN ANSWER BUT
IT'S POTENTIALLY SOMETHING I
COULD BRING BACK TO THE KEISRER
FOR THE PROGRAMS SHE MANAGES.
>> SOUND GREAT.
>> THANK YOU ALSO TO OUR I.T.
SUPPORT.
PLEASE ALLOW ALL PARTICIPANTS ON
ZOOM TO HAVE THEIR CAMERAS ON.
I GET MESSAGE SAYING THEY NEED
HELP FROM YOU.
ALL RIGHT.
WONDERFUL.
>> THE SAFE PASSAGE PROJECT, SO
GLAD THAT THAT WAS INCLUDED.
AND SOME IMPORTANT FINDINGS FROM
THAT.
AS A WHOM WHO HAD A CHILD THAT
DIED OF SIDS AND ONE THAT DIED
AT BIRTH, IT'S AGAIN VERY
DISTRESSFUL, DISTRESSING,
UPSETTING, THAT THAT INFORMATION
DOESN'T GET TO NOT ONLY HEALTH
CARE PROVIDERS BUT THE GENERAL
PUBLIC.
AND I HEAR IT STILL.
THAT WAS 40-SOME YEARS AGO.
AND WHEN I SPEAK PUBLICLY IN
FRONT OF WOMEN OR WOMEN THAT
COME TO MY MEETINGS AND THEY
HAVE THAT SAME LIVED EXPERIENCE
THROUGH THE COVID YEARS, WE HAD
SEVERAL WOMEN WITH THAT WHO HAD
AN INFANT DIE OR AT BIRTH OR
SIDS.
SO THIS IS SOMETHING THAT IS
HAPPENING STILL BUT THERE IS A
COMPLETE DISCONNECT AND, AGAIN,
IT'S LIKE WHY DIDN'T THAT
RESEARCH REALLY GET OUT THERE TO
WHERE IT NEED TO BE?
SO IT'S ALWAYS A BIG QUESTION IN
MY MIND.
>> YEAH, MAYBE MEGHAN CAN SHARE
HER THOUGHTS.
BUT THAT STUDY WAS TEN YEARS,
OVER TEN YEARS IN THE MAKING.
UNFORTUNATELY, THE SEMINAL
FINDING RELATED TO SIDS, THAT
PRESS RELEASE CAME OUT, AND I
JUST LOOKED IT UP, END OF
JANUARY 2020.
IT WAS JUST AS THE PANDEMIC HIT.
UNFORTUNATELY.
THAT NEWS RELEASE SHOWED
TWELVE-FOLD INCREASE IN RISK OF
SIDS WITH EXPOSURE BEYOND FIRST
TRIMESTER.
AND YOU'RE RIGHT, KATH, IF
SITUATIONS IN THE WORLD WERE
DIFFERENT WE COULD HAVE BEEN
ABLE TO GET THAT MESSAGE OUT.
I THINK NICHD DID A GREAT JOB
WITH MEDIA RELEASES, OUR
INVESTIGATORS REALLY GOT OUT
THERE AND DID INTERVIEWS.
I'M NOT QUITE SUREI CAN'T RECALL
HOW MUCH INTERACTION WE HAD WITH
SOME PROFESSIONAL SOCIETIES TO
HELP SPREAD THE WORD ON THAT.
AND SO YOU'RE RIGHT, MAYBE THERE
WAS MISSED OPPORTUNITIES THERE.
I KNOW THE NICHD DIRECTOR CAME
OUT AND DID A BLOG ON THE TOPIC
AS WELL.
SO IT'S THAT HANDOFF IN TERMS OF
RESEARCH TO CLINICAL CARE, BUT
I'M GLAD TO SEE MEGHAN AND NICHD
BROUGHT IT UP AGAIN.
WE TRY TO BRING IT UP.
UNFORTUNATELY THE NETWORK IS NO
LONGER FUNDED.
HOWEVER, PAPERS ARE STILL COMING
OUT FROM INVESTIGATORS, AS WELL
AS THE DATA NOW BEING AVAILABLE
ON NICHD'S DASH REPOSITORY FOR
OTHER INVESTIGATORS TO COME IN
AND DO THEIR OWN ANALYSES.
MEGHAN, I DON'T KNOW IF YOU HAD
ANY COMMENTS THERE.
>> YEAH, I DON'T HAVE TOO MUCH
TO ADD BEING NEW BUT I THINK
THERE'S ALSO JUST WITHIN NICHD,
SINCE BEING HERE SEEMS LIKE
THERE'S A PUSH ALSO TO MOVE MORE
INTO THE DISSEMINATION AND
IMPLEMENT SPACE.
I'M A CLINICIAN, MYSELF, AT
HEART BEFORE COMING TO THE NIH
AND I THINK THAT SOMETIMES THE
MISSING VOID OF HOW DO WE JUST
WHAT YOU SAID, HOW DO WE GET
RESEARCH OUT THERE, SO THAT
PEOPLE IN THE PUBLIC AND
CLINICIAN, PRACTITIONERS,
UNDERSTAND IT.
I THINK THERE'S MORE INTEREST
NOW AT THE NICHD AND SOME OF
THOSE INITIATIVES THAN PERHAPS
SOME OF THE REALLY VALUABLE DATA
THAT WE ACCRUED THROUGH SAFE
PASSAGE STUDY CAN BE PART OF THE
EFFORTS MOVING FORWARD.
BUT I THINK -- I HOPE AT LEAST
CREATION OF DATA HUB AND
BIOSPECIMEN UNIT WILL KEEP THIS
VALUABLE STUDY ALIVE IN SOME
WAYS, AND ALL THAT WAS LEARNED
FROM IT, THERE'S GOING TO BE
MORE LEARNED FROM IT AND IT
DOESN'T SUBSIDE TO UNTIL THE
DATA CHECK PART IS OVER.
>> I WOULD ENCOURAGE YOU TO
THINK ABOUT GETTING IT OUT
BECAUSE I'LL TELL YOU, I'M ONLY
ONE THAT EVER KNOWS ABOUT IT,
I'VE BEEN CHALLENGED BY
PHYSICIANS.
THAT'S NOT TRUE!
AND FORTUNATELY I HAD KEN WARREN
ON TAPE TALKING ABOUT IT.
LIKE, WELL, IF YOU WANT TO HEAR
ABOUT IT, YOU CAN HEAR DR. KIM
WARREN TALK ABOUT IT.
IT'S A SHAME BECAUSE THIS IS
STILL HAPPENING.
IT'S A TERRIBLE THING TO GO
THROUGH.
WE CAN DO BETTER.
YOU KNOW, THE GREATEST THING
ABOUT GETTING OLD AND BEING PART
OF THIS IS I GET TO JUST SPEAK
MY MIND BECAUSE WE SHOULDN'T LET
THAT RESEARCH, ALL THAT MONEY,
ALL THOSE YEARS, JUST GO
SOMEWHERE, WHEN THIS IS STILL A
THING.
IT IS STILL HAPPENING TO PEOPLE.
OFTEN.
SO WE SHOULD REALLY THINK ABOUT
HOW TO CHURN THAT OUT.
>> THANK YOU FOR BRINGING IT UP.
VERY IMPORTANT POINT.
WE APPRECIATE YOU BRINGING UP
THE STUDY.
AGAIN, I CAN TELL WHEN I READ
THE PAPER I WAS ACTUALLY
SURPRISED.
I THINK WE NEED TO BRING IT
BACK.
WE'RE SITTING AROUND THE SAME
TABLE, PARTLY BECAUSE STUDY WAS
PRIMARY NICHD STUDY AND RESULT
WAS RELATED TO ALCOHOL, THIS IS
WHY MAYBE THERE'S DISCONNECT
BETWEEN PUBLIC -- BRINGING THIS
TO PUBLIC BETWEEN TWO
INSTITUTES.
GLAD WE BROUGHT IT BACK.
UNIQUE STUDY, GREAT TO HEAR
THIS.
>> INCREASE TO MATERNAL HEALTH,
THIS IS A MATERNAL HEALTH ISSUE
AS WELL AS KATHY POINTS OUT,
DEVASTATING FOR PARENTS.
THERE'S AN OPPORTUNITY TO
REPUBLICIZE THIS AND TO SEE IF
WE CAN'T GET IT OUT MORE
BROADLY.
THANK YOU FOR THAT.
I'D LIKE TO ASK OUR AGENCIES
AROUND THE TABLE AS WELL AS OUR
AUDIENCE TO THINK ABOUT YOU'VE
GOT MORE RESEARCH INSTITUTE FROM
NIH AT YOUR BECK AND CALL HERE
LISTENING TO YOU.
IS THERE RESEARCH YOU WOULD LIKE
TO SEE THAT WOULD MAKE HUGE
DIFFERENCES MOVING FORWARD
EITHER IN BEING ABLE TO
PUBLICIZE THIS, IN HELPING
INDIVIDUALS WITH LIVED
EXPERIENCE, IN HELPING FAMILIES,
OR IN PREVENTING FASD.
>> ALL RIGHT, QUESTION TO
EVERYBODY.
THANK YOU, GREAT QUESTION.
DO WE HAVE ANY COMMENTS FROM
VIDEOCAST?
IT TAKES SOME TIME BETWEEN US
AND VIDEOCAST.
GO AHEAD.
>> YOU'RE PROBABLY TIRED OF
HEARING FROM ME, I HOPE I'M
STAYED ON TOPIC.
I WOULD REALLY, REALLY LOVE TO
SEE LIFE TRAJECTORIES IN
POSITIVE WAYS FOR PEOPLE AND
LIFE TRAJECTORIES OF PEOPLE WITH
FASD WHO LIVE WITH BIRTH
PARENTS.
I THINK IT'S REALLY OVERLOOKED
AND A LOT OF THEM ARE THERE.
I DO NOT LIVE WITH MY BIRTH MOM.
I LIVE WITH MY MOM I HAVE NOW,
HAVE ALWAYS HAD.
YOU KNOW WHAT I MEAN.
I THINK THERE SHOULD BE MORE
POSITIVE REPRESENTATION AND I
THINK THERE SHOULD BE -- I'M
GOING TO BUTCHER THE WORD,
LONGITUDINAL STUDY.
I DID IT.
ON HEALTH OUTCOMES OF BOTH.
>> ALL RIGHT.
THANK YOU, CJ.
WE DO WANT TO HEAR YOU.
ANYBODY ELSE?
JAN I DON'T SEE NOW.
OKAY.
>> I DON'T THINK I'M GOING TO
ANSWER YOUR QUESTION EXACTLY BUT
I THINK ONE OF THE BIG MISSING
LINKS IN ALL OF WHAT WE'RE DOING
RELATIVE TO RESEARCH IS TO
RECOGNIZE THAT PEOPLE FROM THE
MIDDLE CLASS AND ABOVE DRINK
MORE ALCOHOL THAN PEOPLE IN THE
LOWER CLASS.
AND THEREFORE I THINK IT GOES
WITHOUT SAYING THAT THERE ARE
MORE CHILDREN BORN WITH THE
FETAL ALCOHOL SPECTRUM DISORDER
IN THE UPPER CLASS AND MIDDLE
CLASS THAN IN THE LOWER CLASSES.
AND MOST OF THE RESEARCH THAT IS
GOING ON TODAY IS FOCUSED ON
PEOPLE WHO ARE RELATIVELY
UNEDUCATED FROM LOWER
SOCIOECONOMIC GROUPS, AND I
THINK WE'RE MISSING THE MAJOR,
MAJOR CONTRIBUTION, ONE HUGE
CLASS IN OUR COUNTRY.
I GIVES TALKS AROUND SOUTHERN
CALIFORNIA AND I SEE IN WOMEN'S
GROUPS AND SO FORTH, I SEE AS
I'M TALKING WOMEN WHISPER TO
EACH OTHER, SAYING, THANK GOD
THIS ISN'T US.
AND WE'RE REALLY MISSING A HUGE
GROUP.
>> I THINK THAT'S A GREAT POINT.
THERE HAVE BEEN STUDIES, YOU
KNOW, TO SHARON'S POINT ABOUT
OVERSURVEILLANCE AND THERE WAS
ANOTHER V.A. STUDY THAT BLACK
MEN GET A DIAGNOSED OF ALCOHOL
USE DISORDER WITH LOWER SYMPTOM
SEVERITY THAN WHITE MEN.
THE NEGATIVE OF THAT IS THE
STIGMA.
THE POSITIVE IS THAT THEY MAY
GET HELP QUICKER SO WHAT WE NEED
TO DO IS NORMALIZE THE
CONVERSATION AROUND ALCOHOL SO
THAT EVERYBODY'S ASKED, EVERY
GETS HELP, AND THE SERVICES ARE
PROVIDED.
SO I THINK IT'S A GREAT POINT
THAT UNFORTUNATELY ALCOHOL IS
THAT EQUAL OPPORTUNITY NEGATIVE,
BUT WE COULD TURN THIS SO
EVERYBODY GETS ASKED, EVERYBODY
GETS HELP, SO IT'S NOT THE
NEGATIVE.
>> THANK YOU.
WE HAVE HANDS UP.
JAN?
>> CAN I ADD BEFORE THE NEXT
QUESTION?
>> JAN JUST ONE SECOND.
>> KEN, YOU'RE RIGHT.
WE NEED TO GET THAT WORD OUT.
I THINK IT WAS YESTERDAY SHOWING
SOME HBCD DATA AND DATA SHOWS
DRY BLOODSPOT POSITIVITY FOR
BIOMARKERS AROUND 18% IN THE
HBCD STUDY.
THAT GOT ME TO LOOK AT SOME
OLDER STUDIES BY LUDMILLA
BAKRAVA, MIRANDA, LOOKING AT
BLOODSPOT CARDS ACROSS TEXTS,
INCIDENCE OF BIOMARKERS FOR
ALCOHOL EXPOSURE.
THEY SEE REGIONAL DIFFERENCES.
ONE OF THE THINGS THAT WAS IN
THAT PAPER WAS MOSTLY URBAN
HIGH/MEDIAN INCOME REGIONS HAD
THE HIGHEST PREVALENCE, AT LEAST
THIS BIOMARKER IN DRY BLOODSPOT
CARDS.
THERE ARE OTHER STUDIES THAT
ALSO SUPPORT THAT, YEAH.
>> ALL RIGHT.
THANK YOU.
JAN, YOU CAN GO AHEAD.
>> I WOULD LIKE TO ECHO WHAT DR.
JONES SAID AND WHAT BILL SAID
BECAUSE I THINK IT'S REALLY
IMPORTANT AND WE ARE MISSING
WHERE A LARGE NUMBER OF PEOPLE
WITH ALCOHOL USE DISORDERS OR
EVEN JUST HOW YOU DEFINE A
DISORDER DOESN'T SIT WITH THEM,
THEY DON'T SEE THEMSELVES THAT
WAY.
WHEN YOU HAVE FINANCIAL
RESOURCES THEN YOU CAN HIDE A
LOT OF THINGS.
YOUR CHILDREN ARE WELL FED.
THEY ARE DRESSED.
THEY GO TO SCHOOL.
THERE ARE NOT HOMELESS.
ALL OF THOSE OTHER PIECES ARE
NOT THERE.
AND AS LONG AS WE CONTINUE TO
LOOK AT THIS AS AN US AND THEM
PIECE, WE'RE IN HUGE TROUBLE.
UNTIL WE DEAL WITH -- STIGMA IS
SUCH A COMPLICATED PROBLEM, IT
GOES BACK TO FAR MORE THAN JUST
WHAT WE'RE TALKING ABOUT.
IT'S THE UNSPOKEN VALUES BIAS
AND BELIEFS THEY DON'T THINK
THEY ARE APPLYING UNTIL IT COMES
TO SOMETHING LIKE THIS.
I JUST REALLY STRONGLY THINK
THAT WE NEED TO TAKE ANOTHER
LOOK AT SOME OF THIS AND WE NEED
TO SAY HOW DO WOMEN WHO HAVE HAD
HAD A CHILD ARE FASD AND PARENTS
OR MOTHERS WHO HAVE ADOPTED A
CHILD WITH FASD WORK TOGETHER,
WHY ARE THEY TWO SEPARATE
GROUPS?
WHY CAN WE NOT FIGURE OUT HOW TO
BE US, ALL OF US ARE US.
THERE IS NO THEM.
I HAVE A CLOSE FRIEND WHO IS THE
BIRTH PARENT, HER SON IS NOW
ADULT, BUT WHEN SHE WENT TO HER
FAMILY DOCTOR A FEW YEARS AGO,
SEEKING HELP FOR REFERRAL FOR
HER SON, HE WOULDN'T EVEN
DISCUSS ALCOHOL WITH HER.
HE SAID WHEN SHE BROUGHT IT UP
TO HIM, HE SAID, THIS IS WITHIN
THE LAST SIX YEARS, HE SAID
WELL, YOU'RE NOT ONE OF THOSE
WOMEN, WE DON'T NEED TO TALK
ABOUT THIS.
IT WAS VERY MUCH -- IT'S WHO ARE
THOSE WOMEN, HOW DID WE GET
THERE?
HOW DID WE GET THERE?
BECAUSE THEY ARE US.
WE'RE ALL THOSE WOMEN.
IT'S JUST -- PLEASE, CAN WE
FIGURE OUT HOW TO DO THIS
BECAUSE AS LONG AS WE ONLY LOOK
IN CERTAIN PLACES WE CAN
MAINTAIN THE THEM PIECE, WHICH
WE CAN'T WHEN WE LOOK AT US.
>> WELL, YOU JUST SAID IT.
WE'VE GOT TO NORMALIZE IT.
KATHY WAS TALKING ABOUT IT A
WHILE AGO AS WELL.
I THINK THAT WE NEED TO LOOK AT
THIS DISORDER IN A TOTALLY
DIFFERENT WAY, WE NEED TO CHANGE
THE CULTURE OF THIS DISORDER.
YOU KNOW, WE TALK ABOUT ALCOHOL
ALL THE TIME.
BILL, WILL YOU GO HAVE A BEER
WITH ME AFTER WORK?
IT'S PART OF OUR EVERYDAY LIFE.
WHEN WE TALK ABOUT ALCOHOL IN
TERMS OF PREGNANCY, EVERYTHING
IS MOM, NOBODY SAYS A WORD ABOUT
IT.
EVERYTHING IS MUM.
WHEN YOU SEE A WOMAN CLEARLY
VERY PREGNANT STANDING THERE AT
BAR DRINKING ALCOHOL, NOBODY
WOULD CONCEIVE OF GOING UP TO
HER AND SAYING SOMETHING ABOUT
IT.
WE REALLY HAVE TO CHANGE THE
CULTURE AS FAR AS THIS DISORDER
IS CONCERNED.
AND OBVIOUSLY HOW TO DO THAT IS
ANOTHER STORY.
>> ONE ADDITION TO THAT, THE
BIGGEST, THE TOP QUESTION WE
ALWAYS GET, WHAT ABOUT THE DADS?
PATERNAL EFFECTS HAVE NEVER EVEN
BEEN REALLY THOROUGHLY
INVESTIGATED, AND, AGAIN, I'VE
HAD PEOPLE STAND UP AND GO, WHO
TOLD YOU THAT?
IT MUST HAVE BEEN A GROUP OF
MEN.
YOU KNOW, THERE IS AN
IMPLICATION THAT, YOU KNOW, THIS
IS ALL ABOUT THE MOMS.
WHEN WE TALK ABOUT US AND THEM,
THIS IS ALL THE MOM.
WELL, WHAT IF IT WASN'T?
WHAT IF THERE WERE PATERNAL
EFFECTS WE HAVEN'T EVEN
UNDERSTOOD?
YOU KNOW, I'M JUST SAYING.
YES, FOR RESEARCH.
>> AND THERE ARE SOME STUDIES
THAT ARE SUGGESTED POSSIBLE
PATERNAL EFFECTS, SO --
>> EVERY TIME I SEE THEM, I'LL
CHECK WITH ED RILEY, IS THIS
LEGIT?
TALK TO ME.
I WANT TO TALK ABOUT RESEARCH,
THAT'S ACCURATE.
HE WILL COME BACK AND GIVE ME
TYPICALLY THE REASONS WHY MMM,
NO, I'M GOING TO TELL YOU WHAT'S
WRONG WITH THAT STUDY, OR THIS
AND THAT.
I TRUST, YOU KNOW, TO DIRECT, WE
DO NEED A BETTER UNDERSTANDING.
>> WE'RE FUNDING AN R01, MIKE
GOLDING AT TEXAS A & M IS AN
ANIMAL RESEARCHERS, HE'S JUST
STARTING TO PUBLISH DATA THAT
SUGGESTS THERE ARE PATERNAL
CONTRIBUTIONS IN THE AREAS OF
ALCOHOL INDUCE THE BIRTH
DEFECTS, HE HAS A UNIQUE MODEL
LOOKING AT ALCOHOL EXPOSURE IN
MICE, PATERNAL, MATERNAL, AND
COMBINATION WHEN YOU'VE GOT TWO
MICE THAT HAVE ALCOHOL EXPOSURE.
AND SO SOME OF HIS DATA IS JUST
STARTING TO COME OUT.
I THINK IT NEEDS TO BE
REPLICATED BY OTHER
INVESTIGATORS, BUT IT DOES LOOK
LIKE THERE IS A ROLE FOR DADS
DRINKING POSSIBLY IN THE
PHENOTYPE FOR FASD.
>> SO DAY YOU'LL HAVE DATA.
>> THAT WOULD BE A GAME CHANGER
IN STIGMA, WANTING TO LOCK WOMEN
UP, RIGHT?
>> ALL RIGHT.
I ALSO WANTED TO TELL, SPEAKING
ABOUT STIGMA, BROUGHT UP IN OUR
MEETING TODAY, I WANTED TO TELL
ABOUT FUNDING ANNOUNCEMENT
ISSUED BY OFFICE FOR DISEASE
PREVENTION AT NIH TOGETHER WITH
SEVERAL INSTITUTES, INCLUDING
NIDA, NIAAA, NICHD
NIMH, ABOUT SCREEN BRIEF
INTERVENTION REFERRAL FOR
TREATMENT, THIS ANNOUNCEMENT HAS
ADDITIONAL TO THIS, IT HAS P AT
THE END, REFERRAL TO TREATMENT,
OR PREVENTION.
AND WHEN WE DISCUSS THIS IN
ANNOUNCEMENTS ONE OF THE REASONS
WAS HOW WE CAN ADDRESS STIGMA IN
AND HOW WE CAN INCREASE
IMPLEMENTATION OF SCREEN BRIEF
INTERVENTION TO MAKE IT
UNIVERSAL AND TO HAVE PHYSICIANS
OPEN TO SPEAK ABOUT THIS ISSUES
WITH PATIENTS.
SO WITH THAT, PREVENTION,
POSSIBILITY TO ADDRESS THIS,
PREVENTION COULD BE SOMETHING
WHICH RELATES TO INCREASING
ALCOHOL USE BECAUSE OF STRESS,
BECAUSE OF FAMILY ISSUES,
BECAUSE OF ANY OTHER CONDITIONS
WHICH PERSON MAY HAVE.
WITH THAT, WE'RE VERY
ENTHUSIASTIC ABOUT THIS
ADDITIONAL PIECE TO THE END
BECAUSE AT THIS TIME YOU DON'T
HAVE TO MAKE REFERRAL AND THINK
ABOUT SUBSTANCE USE TREATMENT
AND DISORDERS, YOU ALSO CAN
THINK ABOUT REFERRAL TO
PREVENTION.
WERE THAT IT'S ACTUALLY MUCH
BROADER OPPORTUNITIES AND
HOPEFULLY LESS STIGMATIZATION,
EXCITED TO SEE WHAT'S GOING TO
HAPPEN WITH THAT.
OPEN ANNOUNCEMENT, I JUST WANTED
TO BRING IT TO EVERYBODY.
YOU CAN LOOK UP ORE -- OR
E-MAIL US AND WE'LL BE HAPPY TO
SEND LINK TO ANNOUNCEMENT.
WE HAVE TWO HANDS.
WE HAVE GUESTS HERE FROM FASD
UNITED.
YOU CAN GO AHEAD.
>> HI.
THIS IS THE JUICY PART OF THE
CONVERSATION FOR ME.
I HAVE SO MANY THOUGHTS, I HOPE
THERE'S A POINT TO WHAT I'M
ABOUT TO SAY.
BUT I THINK THIS CONVERSATION
ABOUT HOW WE MAKE THIS SCREENING
UNIVERSAL AND HOW WE JUST ASK
EVERYONE AND HOW WE GET PAST
THIS STIGMA, THAT'S THE IDEAL
FOR THERE NOT BEING STIGMA
AROUND THIS TOPIC.
WE ASK EVERY SINGLE PERSON.
A COMMON CONVERSATION AROUND
FASD COMMUNITY RIGHT NOW, HASN'T
REALLY BEEN BROUGHT UP, THIS
IDEA OF 100% PREVENTIBLE, THE
MORE YOU TALK TO SELF-ADVOCATES
AND BIRTH PARENTS AND EVEN
PHYSICIANS, WHO SAY, YOU KNOW,
IN PRACTICE IT ISN'T 100%
PREVENTIBLE, THERE'S A TIME
BEFORE KNOWING YOUR PREGNANT,
YOU KNOW, THERE ARE GEOGRAPHIC
FACTORS, ACCESS FACTORS, SOCIAL
DETERMINANTS OF HEALTH, ALL OF
THESE THINGS.
WHEN YOU TAKE THAT PIECE OUT,
YOU KNOW, IT'S TECHNICALLY 100%
PREVENTIBLE BUT BECAUSE OF
THESE, BLAME IS COMPLICATED.
BLAME IS TOO GRAY OF AN AREA TO
TRY TO NAIL SOMETHING DOWN.
IT'S LIKE TRYING TO NAIL
SOMETHING INTO AN OCEAN WAVE,
THE WATER IS STILL GOING BACK.
IT'S TOO ABSTRACT.
BUT I THINK THAT NARRATIVE
STARTING TO GAIN TRACTION, FASD
COMMUNITY IS DOING WONDERS FOR
TAKING THAT STIGMA OUT OF THE
CONVERSATION, AT LEAST MAKING US
MORE COMFORTABLE LIVING IN THAT
GRAY AREA.
I THINK THAT'S A REALLY
IMPORTANT CONVERSATION AND THEN
ALSO I HAVE AN OLDER BROTHER
WITH AN FASD, MY REASON FOR MY
WORK.
BUT I ALSO HAVE AN AUTISM
DIAGNOSIS, AND WATCHING THE WAYS
WE'RE TREATED VERY DIFFERENTLY
AND HAVE RECEIVED SERVICES
DIFFERENTLY, IS ALSO A KIND OF
LENS OR MODEL THAT I LOOK AT
THESE ISSUES WITH.
AND SOMETHING I'D LIKE TO SEE
HAPPEN AND I'M DOING PERSONALLY
WITH A FRIENDA SUPPORT GROUP
THROUGH FASD COLLABORATIVE CALL
TO ACTION TO NEURODIVERSITY
COMMUNITY SAYING NOT JUST WE
NEED TO CREATE SPACE FOR FASD
AND TRACTION BUT JUST KEEPING
THE CONFERRATION AROUND ADHD,
AUTISM, CONVERSATION WITH PEOPLE
IN HIGHER CLASSES HAVE WEALTH,
MIDDLE CLASS AND UP, WHITE,
EDUCATED, PEOPLE WHO WE KNOW ARE
CONSUMING ALCOHOL DURING
PREGNANCY BASED OFF BEHAVIORAL
RISK FACTOR ASSESSMENT, THAT
THOSE PEOPLE ARE USUALLY
ATTEMPTING TO GET AN ADHD AUTISM
DIAGNOSIS OR NEUROPSYCH
EVALUATION THAT DOESN'T INCLUES
FASTED. -- DOESN'T INCLUDE FASD.
THE PSYCHOLOGICAL ASSESSMENTS
ARE ALREADY BEING DONE, BUT
BEING ABLE TO SAY, HEY, THINGS
ALREADY BEING DONE INCLUDE US.
YOU KNOW, THIS INFRASTRUCTURE IS
GREAT BUT UNLESS DONE IN
COLLABORATION WITH THESE OTHER
SPACES, IT JUST FURTHERS THAT
DIVIDE, AND LAST THING I'LL SAY
IS I'VE HAD CONVERSATIONS WITH
MY MOTHER WHO IS NOT MY
BROTHER'S BIRTH MOM, AND WE
SHARE THIS SENTIMENT OF ADOPTIVE
CAREGIVERS ARE SO ADAMANT TO SAY
I AM THE REAL MOM.
THE REAL PARENT.
THIS IS THE REAL FAMILY.
UNTIL FASD IS IN THE
CONVERSATION, WELL, I'M THE
ADOPTIVE PARENT.
AND THAT IS REALLY DIFFICULT TO
SEE ESPECIALLY FOR KIDS WITH
FASD WHO THEY ARE SEPARATED
FROM, YOU KNOW, BLOOD LINE DOES
MATTER NOW BECAUSE FASD IS PART
OF THE CONVERSATION.
AND THAT'S SOMETHING I WANT
PEOPLE TO SIT WITH AND WHAT THAT
MEANS TO THAT PERSON.
AND THEN ALSO IF ANYONE HERE IS
IN THAT FURTHER BROADER
NEURODIVERSE COMMUNITY, TALKING
ABOUT WHAT IT LOOKS LIKE FOR
SOMEBODY WITH AUTISM OR ADHD TO
SAY TO A PARENT DID YOU DRINK
ALCOHOL DURING PREGNANCY?
I'VE BEEN DIAGNOSED, HOW DO YOU
ASK THE BIRTH PARENTS TO TAKE IT
A STEP FURTHER AND PUT THAT
QUESTION IN THE NEUROPSYCH
EVALUATION.
THAT'S A LOT OF THINGS I WAS
THINKING ABOUT, LAID OUT AT ONCE
BUT THEY WERE THINGS THAT I
WANTED TO GET AS PART OF THE
CONVERSATION AND WHEN I SEE CJ
NODDING I'M HAPPY I SAID IT.
>> THANK YOU.
THANK YOU SO MUCH.
WE HAVE TWO MINUTES UNTIL END OF
MEETING.
SO WE HAVE TWO HANDS NOW, EACH
HAS ONE MINUTE.
JANANI, YOU WERE FIRST.
GO AHEAD.
>> I HAD A COUPLE POINTS, I'LL
KEEP IT BRIEF.
I WANTED TO GO BACK TO A COUPLE
COMMENTS, JUST A COUPLE COMMENTS
MADE.
FIRST, CJ MENTIONED WANTING TO
REALLY THINK ABOUT DEVELOPMENTAL
TRAJECTORIES FROM POSITIVE AND
SUPPORTIVE CONTEXT, I WANTED TO
BRING UP ASPECTS OF HBCD THAT
DIDN'T GET INTO, DIDN'T HAVE
TIME IN MY PRESENTATION.
SPECIFICALLY LIKE SO MUCH OF
WHAT WE'VE TALKED ABOUT POINT TO
HOW MULTI-FACETED THIS IS AND
HOW REALLY UNDERSTANDING WHO IS
AT OUR TABLE, WHO IS AT OUR
OFFICE, WHO COMES TO THE LAB IS
IMPORTANT.
ONE OF THE THINGS HBCD BECAUSE
WE HAVE -- ONE OF THE THINGS
WE'RE CONSCIOUS ABOUT THINKING
THROUGH CHARACTERISTICS AND
BEING ABLE TO BALANCE BETWEEN
RURAL, URBAN, WHERE INCIDENCE OF
HIGH DISEASE BURDEN REALLY
EXIST, SO WE CAN SAMPLE
POPULATIONS APPROPRIATELY HAS
BEEN A HUGE FOCUS, ALLOWING US
TO CHARACTERIZE THE ENVIRONMENT
FROM A MULTI-FACETED
PERSPECTIVE.
WE TALK ABOUT RISK TRAJECTORIES,
I SAID THAT IN MY TALK BUT IT'S
ALSO IMPORTANT TO ACKNOWLEDGE
THAT GETTING THIS DATA ABOUT THE
ENVIRONMENT, FAMILIES,
RESOURCES, AND MUCH MORE ALLOWS
US TO ALSO LOOK AT PROTECTIVE
AND RESILIENT FACTORS AS WELL
AND LOOK THROUGH THAT FROM A
LONGITUDINAL PERSPECTIVE.
I WANTED TO MENTION THAT AS A
POTENTIAL VALUE COMING OUT OF
HBCD SINCE WE'LL BE ABLE TO LOOK
AT LONGITUDINAL TRAJECTORIES IN
THAT STUDY.
I'LL LEAVE MY OTHER COMMENTS FOR
LATER.
I DON'T WANT TO TAKE UP TOO
TIME.
I ALREADY SPOKE MORE THAN ONE
MINUTE.
>> CJ, YOUR HAND WAS UP.
>> YEAH, I WANT TO MIRROR THE
STIGMA PIECE.
EARLIER WHEN I WAS TELLING YOU
HAVE ADOPTED BOTH MY BOYS IT
WASN'T TRYING TO DISTANCE MYSELF
FROM THEIR FASD DIAGNOSIS.
I WAS JUST REALLY PROUD THAT I
AS AN INDIVIDUAL WITH FASD HAD
THE ABILITY TO ADOPT BECAUSE
STIGMA IS THERE AS WELL.
THE OTHER THING IS, YOU KNOW, I
WENT OUT TO LUNCH WITH MY
BOYFRIEND AND HIS EX-BOSS, AND
HE FOUND OUT I HAVE CHILDREN, I
WAS TALKING ABOUT FASD WORK.
AND LATER IN THE CONVERSATION HE
SAID SOMETHING ABOUT HOW I HAVE
AN 18-YEAR-OLD, TECHICALLY
ADOPTED.
GOOD, I WASN'T JUDGING BUT WAS
TOTALLY JUDGING.
I SAID, WELL, THAT'S THE INITIAL
REACTION, BUT EVEN IF I DID
DRINK, I WOULD BE HONEST WITH
YOU.
AND THIS IS THE CONVERSATION WE
NEED TO HAVE.
I HAVE BEEN, YOU KNOW, TOLD
PEOPLE THOUGHT -- I'M A BIRTH
MOM, THAT I WAS A BIRTH MOM, AND
YOU KNOW WHAT?
I HAVEN'T CORRECTED THEM BECAUSE
THEY DON'T NEED THAT
INFORMATION.
AND THE MORE I LOOK THEM IN THE
EYE, I'M LIKE, WELL, YEAH, I AM,
SO PEOPLE ARE GRAPES OR RAISIN.
IF YOU SHRIVEL UP UNDER THE
PRESSURE YOU'RE A RAISIN.
YOU DON'T DESERVE TO BE A GRAPE.
I'VE SEEN MY SHARE OF RAISINS.
AND THE MORE RAISINS I COLLECT,
THE MORE TIMES I HAVE SOMEONE
GOING OFF AND THINKING ABOUT
WHAT IT MEANS TO BE A BIRTH MOM.
AND I DON'T SEPARATE MYSELF FROM
MY CHILDREN'S BIRTH PARENTS.
I'M JUST LUCKY I DON'T HAVE AN
ALCOHOL USE DISORDER, I HAVE
INFORMATION AND RESOURCES TO NOT
DRINK.
AND IT LEADS PEOPLE GOING, OH,
SO THOSE CONVERSATIONS DO HAPPEN
AS WELL.
I DON'T LIKE TO SEPARATE MYSELF
FROM MOMS WHO HAVE GIVEN BIRTH
VERSUS ADOPTIVE MOMS, IT DOESN'T
DO ANY GOOD, DISHONEST AND
TERRIBLE, I DON'T KNOW THE WORD.
I WOULD FEEL LIKE A TRAITOR TO
WOMEN WHO DRANK AND GAVE BIRTH.
I'M A MOM JUST LIKE THEM.
>> THANK YOU FOR SHARING.
ALL RIGHT.
LAST BUT NOT LEAST, THIS WOULD
BE LAST COMMENT BECAUSE WE'RE
OUT OF TIME AND I WILL LET OUR
CHAIRS CONCLUDE.
>> I WILL BE VERY BRIEF.
THIS COMMITTEE HAS BEEN VITAL TO
THE FEDERAL RESPONSE TO FASD AND
TO FASTED COMMUNITY MORE THAN 25
YEARS, I THINK IT'S REMARKABLE
WHAT THE AGENCIES HAVE DONE AND
ARE DOING.
THAT'S WERE SOMETHING
SIGNIFICANT THAT'S MISSING.
THAT'S MONEY AND RESOURCES.
FOR 18 YEARS HRSA HAD ONE GRANT,
ONE PROJECT HERE.
AS WE HEARD TODAY, INCREDIBLY
SUCCESSFUL.
NO FUNDING, NO FUNDING AT THIS
POINT.
YET STILL AT THE TABLE.
SO IT'S CRITICAL THAT WE PASS
THE RESPECT ACT, I WANT TO
MENTION THAT.
WE ALL HAVE A ROLE WITH THAT.
IT'S CRITICAL THAT THERE ARE
AUTHORIZATIONS AND
APPROPRIATIONS TO DO THINGS
WE'VE LEARNED ARE SUCCESSFUL.
AND WE KNOW ARE BADLY NEEDED.
SO, WE'RE OPTIMISTIC THAT WE CAN
MAKE PROGRESS AND WE CAN GET
LEGISLATION PASSED, AND WE CAN
GET GREATER ATTENTION AND
INVESTMENT FOR THIS ISSUE.
BECAUSE IT'S -- IT'S AN SHAME
NOT JUST NOVEL APPROACHES BUT
FUNDAMENTAL APPROACHES TO
ADDRESSING DISABILITIES, WE'RE
UNABLE TO DO.
LISTENING TO ALL OF THE IDEAS
AND ALL OF THE THINGS, IT COMES
DOWN TO SO OFTEN NOT HAVING
RESOURCES TO DO THE INTERVENTION
STUDIES OR TO HAVE AN ECONOMIC
STUDY, HAVE THINGS THAT WILL
ADVANCE THE FIELD AND MAKE SURE
PEOPLE HAVE SERVICES THEY NEED.
SO, WE'RE GOING TO KEEP AT IT.
AGAIN, EVERYONE HAS A ROLE, EVEN
THOSE OF YOU IN AGENCIES STILL
AS INDIVIDUALS, YOU CAN SPEAK
OUT, CONTINUE YOUR VITAL WORK TO
ALLOWS EMMA, KATHY, MYSELF AND
OTHERS TO GO TO LAWMAKERS AND
INSIST THAT WE GET MORE
ATTENTION TO THE ISSUE.
THANK YOU FOR A GREAT MEETING
AND ALL THAT YOU'RE DOING.
>> THANK YOU.
THANK YOU, TOM, FOR COMING.
WE ALWAYS APPRECIATE WHEN YOU
COME.
I ALSO SPEAK TO VIDEOCAST, WE
INVITE FOR PUBLIC MEETINGS
EVERYBODY, WE'RE OPEN, WE
WELCOME YOU.
COME NEXT TIME WHEN WE HAVE
PUBLIC MEETING.
THANK YOU SO MUCH.
ALSO BEFORE WE CONCLUDE JUST
WANTED TO TELL ONE OF OUR GOALS
WE'RE THINKING ABOUT ACTIONS,
RIGHT?
AFTER THE MEETING MEMBERS
THINKING ABOUT ACTIONS WHAT YOU
WANT TO DO WITHIN YOUR
INSTITUTE, WITHIN YOUR AGENCY.
AND ANYTHING YOU FEEL WE CAN
HELP AS ICCFASD, WORKING GROUP
OR HELP WITH ADVICE, JUST GET
BACK TO UNDER THE CIRCUMSTANCES.
THIS IS OUR WORKING MEETING FOR
PUBLIC BUT WE'RE WORKING
TOGETHER.
SO THINK ABOUT ACTIONS.
WITH THAT, I WILL TURN TO TRISH
POWELL TO CONCLUDE.
>> I WANT TO ADD MY THANKS TO
EVERYONE FOR SPENDING THE WHOLE
DAY WITH US.
I SO APPRECIATE YOUR TIME AND
ATTENTION.
I KNOW THERE ARE A LOT OF THINGS
THAT PULL ON YOUR TIME BUT I
THINK THIS IS VITALLY IMPORTANT.
BEING AN INTERAGENCY COMMITTEE
WE CAN LEVERAGE EACH OTHER'S
ACTIONS, KNOWLEDGE, EXPERTISE,
BUT WE ALSO NEED TO HEAR FROM
ALL OF THE PEOPLE WHO
PARTICIPATED TODAY AND EVERYONE
OUT THERE FOR IDEAS FOR
RECOMMENDATIONS FOR WHAT
DIFFERENT PEOPLE NEED FROM US
BECAUSE WE SERVE THE PUBLIC.
THAT'S OUR JOB.
SO PLEASE LET US KNOW WHAT'S
MOST IMPORTANT TO YOU.
PLEASE CONTINUE TO STAY IN
TOUCH.
MEMBER AGENCIES, IT'S OUR JOB TO
WORK TOGETHER, SO THANK YOU VERY
MUCH.
>> THANK YOU, EVERYONE.
THANK YOU, ALL PARTICIPANTS.
THANK YOU, WE CONCLUDE NOW.
[END OF PROGRAM]