>> Haynes: HI, EVERYBODY.

WELCOME TO "BASIC BLACK."

SOME OF YOU ARE JOINING US ON OUR BROADCAST AND OTHERS OF YOU ARE JOINING US ON OUR DIGITAL PLATFORMS.

I'M CRYSTAL HAYNES, YOUR HOST.

CALLIE CROSSLEY HAS THE NIGHT OFF.

TONIGHT: SICKLE CELL DISEASE.

SICKLE CELL DISEASE IS AN INHERITED BLOOD DISORDER THAT AFFECTS RED BLOOD CELLS.

THE DISEASE IMPACTS THE LIVES OF NEARLY 100,000 PEOPLE, PREDOMINANTLY OF BLACK AND BROWN DESCENT IN THE UNITED STATES AND INCREASES TO ABOUT 3.5 MILLION PEOPLE ACROSS THE GLOBE.

SICKLE CELL DISEASE AFFECTS EVERY ORGAN OF THE BODY, AND TREATMENT SPANS THE LIFETIME OF THE PATIENT.

RIGHT NOW, A BONE MARROW OR A STEM CELL TRANSPLANT IS THE ONLY CURE, AND IT'S RISKY.

ADVOCATES SAY THE LIMITED TREATMENT OPTIONS ALONG WITH ONGOING HEALTH DISPARITIES AMONG BLACK AND BROWN PATIENTS MAKE IT CHALLENGING FOR THEM TO RECEIVE THE QUALITY OF CARE THEY DESERVE.

JOINING US THIS EVENING: DR. SHARL AZAR, MEDICAL DIRECTOR, COMPREHENSIVE SICKLE CELL DISEASE TREATMENT CENTER AT MASS GENERAL HOSPITAL.

STATE REPRESENTATIVE BUD WILLIAMS, REPRESENTING THE 11TH HAMPDEN DISTRICT IN SPRINGFIELD AND CHAIRPERSON, JOINT COMMITTEE ON RACIAL EQUITY, CIVIL RIGHTS, AND INCLUSION.

CARISSA JUAREZ, A MOTHER OF A CHILD LIVING WITH SICKLE CELL DISEASE AND PATIENT AMBASSADOR FOR THE MASSACHUSETTS SICKLE CELL ASSOCIATION, FORMERLY KNOWN AS THE GREATER BOSTON SICKLE CELL DISEASE ASSOCIATION.

AND DIMA HENDRICKS, HEALTH ADVOCATE, ACTIVIST, SICKLE CELL "WARRIOR."

AND FOUNDER OF, THROUGH THE PAIN WELCOME TO YOU ALL.

>> THANK YOU.

>> YEAH.

>> Haynes: YEAH, THIS IS GOING TO BE A DYNAMIC DISCUSSION.

THIS IS A DISEASE THAT HAS BEEN AROUND SINCE THE 1900'S, SOME REPORTS SAY EVEN BEFORE THAT, SO WHY HASN'T SICKLE CELL DISEASE RECEIVED MORE ATTENTION?

DR. AZAR I'D LIKE TO START WITH YOU.

>> THANK YOU SO MUCH FOR HAVING ME.

I THINK THE ANSWER TO THAT THE REALLY SIMPLE, IT'S A DISEASE OF BLACK AND BROWN PEOPLE.

I THINK SICKLE CELL DISEASE IS THE PICTURE OF HEALTH INEQUITIES IN OUR HEALTHCARE SYSTEM.

FOR THE LAST 200, 300 YEARS, PATIENTS WITH SICKLE CELL DISEASE HAVE BEEN MISTREATED IN THIS COUNTRY, EVEN THOUGH WE'VE ONLY KNOWN ABOUT THE DISEASE THE LAST 120 YEARS OR SO, PATIENTS BEFORE THAT WITH SEVERE PAIN WERE NOT TREATED PROPRIETARILY BECAUSE OF THE COLOR OF THEIR SKIN.

>> Haynes: CARISSA, WHY DO YOU THINK THIS IS NOT BEING SPOKEN ABOUT?

>> I THINK THERE'S NOT ENOUGH EDUCATION OUT THERE, FIRST OF ALL.

WE NEED TO ADVOCATE MORE.

I AGREE WITH THE DOCTOR THAT, YOU KNOW, THIS HAS A LOT TO DO WITH THE COLOR OF OUR SKIN AND WHERE WE COME FROM AND STUFF LIKE THAT.

I THINK THIS IS A BIG ISSUE.

THIS IS ONE OF THE BIGGEST ISSUES.

AND BECAUSE OF THAT, THERE'S THAT LACK OF EDUCATION AND KNOWLEDGE TO IT.

SO A LOT OF, YOU KNOW, BIASES TO THIS.

AND IT'S REALLY SAD BECAUSE THINGS THAT WE HAVE TO GO THROUGH EVERY DAY, YOU KNOW, EVEN WITHIN THE FAMILY, YOU KNOW, AT HOSPITALS, AT SCHOOLS, ANYWHERE.

YOU KNOW, IT'S A TOUGH THING.

>> YEAH, REPRESENTATIVE WILLIAMS, WHEN YOU BRING UP THIS TOPIC ON THE COMMITTEE, YOU KNOW, IN THE HOUSE OF REPRESENTATIVES, IS THIS SOMETHING PEOPLE KNOW ABOUT OR IS IT AT THE TOP OF THEIR LIST WHEN THAT YOU CANNING ABOUT -- WHEN TALKING ABOUT HEALTH DISPARITIES?

>> HEALTH DISPARITIES IN THIS COUNTRY IN THE COMMONWEALTH OF MASSACHUSETTS, AS WE KNOW, ARE OUT OF WHACK WHEN IT COMES TO BLACK AND BROWN PEOPLE.

WHAT WE HAVE DISCOVERED AND FOUND OUT DURING COVID 19, THE HEALTH SYSTEM JUST DWUNT DOESN'T WORK.

WHEN YOU MAGNIFY THAT AND START TALKING ABOUT A DISEASE LIKE SICKLE CELL, YEARS AGO IT WAS TALKED ABOUT, WHEN I WAS TALKING TO THE SCD WARRIORS, IT ALMOST WENT RADIO SILENCE.

WE TREATED IT AND BROUGHT IT BACK.

BUT WE KNOW ANY DISEASE THAT AFFECTS BLACK AND BROWN PEOPLE DISPROPORTIONATELY IS NOT ON THE FRONT BURNER, AND THAT'S A CHALLENGE.

WHAT HAPPENED DURING THE GEORGE FLOYD MOMENT WHEN HE TOOK THE KNEE, IT MAGNIFIED THE INEQUALITIES IN JUST ABOUT EVERY SINGLE SYSTEM IN AMERICA.

>> THAT'S RIGHT.

>> AND ESPECIALLY THE HEALTH SYSTEM.

ONE OF DR. KING'S LAST GREAT WORDS WERE TALKING ABOUT HEALTHCARE, AND HEALTHCARE JUST HASN'T WORKED.

AND, CERTAINLY, WE HAVE TRIED IN THE HOUSE OF REPRESENTATIVES TO REFOCUS OUR ENERGY WITH THE GREAT WORK OF THE ADVOCATES WHO HAVE BEEN ON THE GROUND A LONG TIME.

WE ADVOCATED $250,000 FOR THE GREATER BOSTON SICKLE CELL ASSOCIATION TO DO OUTREACH WORK AND EDUCATION, THAT WAS LET BY REP CHINA TYLER, AND WE ALSO PUT IN A COUPLE OF OTHER KEY LEGISLATIVE INITIATIVES, WHICH WAS TO MAKE THE HEALTH -- MassHealth DEPARTMENT START REPORTING.

WE ACTUALLY DON'T KNOW HOW MANY CASES THAT WE HAVE IN THE COMMONWEALTH.

NOW, WHEN I FIRST STARTED, WE WERE TALKING ABOUT 1,000 CASES, A COUPLE OF YEARS AGO.

BUT NOW THEY SAY 1,600.

I WOULD THINK THAT WOULD BE LESS OF A NUMBER.

AND THE LAST PIECE THAT WE TRY TO DO IS START THE SDC COMMISSION LED BY STATE REP JOHN SANTIAGO OUT OF BOSTON WHO IS A DOCTOR AND CREATE THIS COMMISSION THAT REALLY GIVES SOME TEETH, SOME ENERGY AND PUT THIS ON THE FRONT BURNER.

IF THIS WAS HAPPENING TO ANY OTHER SEGMENT OF OUR POPULATION OTHER THAN BLACK AND BROWN PEOPLE, THERE WOULD BE MORE ENERGY, MORE ATTENTION.

AND I BRING UP BREAST CANCER.

MY WIFE IS A TWO-TIME SURVIVOR OF BREAST CANCER.

BUT WHEN WE SAY BREAST CANCER IN AMERICA, HERE WE GO, WE WALK ON SUNDAY, WE DO THE GREATER HOPE WALK.

YOU SAY SICKLE CELL, IT'S BLAH.

>> YOU HAVE HAD SICKLE CELL YOUR WHOLE LIFE, DIMA.

>> YES.

>> Haynes: WHAT HAS BEEN YOUR EXPERIENCE WITH AWARENESS OF THE DISEASE AND HOW MANY PEOPLE SUFFER WITH IT?

>> AWARENESS ACTUALLY BEGINS WITH THE FAMILY.

CULTURALLY, MY MOM'S JAMAICAN AND FATHER IS NIGERIAN, THERE'S SHAME ASSOCIATED WITH THE STIGMA OF SICKLE CELL DISEASE, AND THERE'S A FORCE TO DO BETTER.

WE ALWAYS, ESPECIALLY IN MY NIGERIAN CULTURE, YOU KNOW, YOU'VE GOT TO GROW UP AND BE A DOCTOR, GROW UP AND BE AN ENGINEER.

WE HAVE TO SAVE FACE.

OH, YOU'RE IN PAIN?

DRINK SOME GINGER ALE, RUB SOME BENGAY, WALK OUT THE DOOR, HERE ARE HERSCHEL METHODS.

THAT'S WHY WE'RE SO QUIET.

WARRIORS TEND TO BE QUIET ABOUT THE DISEASE.

IN INDIA A LOT OF PEOPLE HAVE SICKLE CELL DISEASE BUT THEY'RE QUIET ABOUT IT BECAUSE OF THE STIGMA RELATED TO THE DISEASE.

>> Haynes: DR. AZAR, TALK TO ME ABOUT THE TREATMENT OPTIONS.

WE WERE TALKING A LITTLE BIT OFF CAMERA ABOUT HOW THERE ARE CERTAIN TREATMENT PLANS, ACCESS TO TREATMENT IS A PROBLEM, TALK TO ME ABOUT WHAT THAT LOOKS LIKE.

>> THE REALITY IS THAT THERE ARE NOT ENOUGH TREATMENTS.

YOU KNOW, IN THE LAST 20 YEARS, WE'VE HAD ONLY THREE NEW DRUGS COME OUT FOR THIS DISEASE.

IF YOU COMPARE IT TO OTHER CHRONIC CONGENITAL DISEASES LIKE CYSTIC FIBROSIS WHICH IS A TERRIBLE DISEASE BUT 14 OR 15 DRUGS HAVE BEEN DEVELOPED OVER THE SAME COURSE OF THE TIME PERIOD AND WE HAVEN'T HAD ANYTHING AKIN TO THAT IN SICKLE CELL DISEASE.

THE THERAPIES ARE LIMITED IN WHAT THEY'RE ABLE TO ACCOMPLISH IN PATIENTS.

THE ONE DRUG SHOWN TO HELP PAISHTH WITH SICKLE CELL DISEASE, AND THEY LIVE LONGER, THE DRUG HAS BEEN AROUND FOR OVER 20 YEARS, HAS NOT BEEN CHANGED OR MODIFIED IN ANY WAY AND IS AN ANTIQUATED CHEMOTHERAPY DRUG THAT WE'VE HAD TO SORT OF WEDGE INTO SICKLE CELL DISEASE.

>> CARISSA, YOU WERE TALKING ABOUT JUST GETTING YOUR DAUGHTER ON THE RIGHT COCKTAIL OF MEDICINE SO THAT SHE CAN LIVE AS AN 1 IS-YEAR-OLD -- AS AN 11-YEAR-OLD, EVEN THOUGH SHE IS IN SOME PAIN EVERY DAY.

>> YES, SHE IS ON A LOT OF MEDICATION EVERY DAY.

SHE CAN TAKE FROM 7 TO 15 PILLS A DAY, AND IT'S TOUGH.

AND SOME OF THESE, HALF OF THESE PILLS ARE JUST PAIN-CONTROLLING PILLS.

AND THEN THERE'S THE CHEMO PORTION OF IT, TOO.

AND, YOU KNOW, IT DOES HELP, BUT THERE'S SIDE EFFECTS TO ALL OF THESE THINGS, TOO.

SO, FOR EXAMPLE, THE CHEMO PILL SHE'S TALKING ABOUT, MY DAUGHTER HAS STARTED TO LOSE HAIR, HAS A LITTLE BIT OF BALD SPOTS.

THEN THERE ARE THE NARCOTICS, WHICH IS THE PAIN-CONTROLLING, AND IT'S TOUGH -- FOR AN 11-YEAR-OLD, IT'S HARD BECAUSE SHE CAN BECOME TIRED FROM IT OR SHE'S NOT QUITE FOCUSED.

SHE HAS TO GO TO SCHOOL, SHE CAN'T REALLY FOCUS.

SHE'S SLEEPY.

THERE'S A LOT OF THINGS THAT COME IN PLAY WITH THIS.

SHE'S FREQUENTLY ON A LOT OF MOTRIN, SO WE HAVE TO WATCH HER KIDNEYS.

TYLENOL SHE WAS GIVEN AT ONE POINT DOESN'T DO MUCH, SO I ELIMINATE IT, BECAUSE, YOU KNOW, WHY TRIGGER THE LIVER, YOU KNOW, WHEN WE'RE ALREADY TRIGGERING OTHER PARTS OF THE BODY THAT, YOU KNOW -- WITH ALL THE OTHER MEDICATIONS.

IT'S TOUGH.

IT'S REALLY HARD.

AND THEN, YOU KNOW, FROM HAVING SICKLE CELL, THERE'S OTHER COMPLICATIONS THAT COME INTO EFFECT, ALSO, YOU KNOW, AND IT'S REALLY HARD ON HER.

YOU KNOW, RIGHT NOW, WE'RE FACING AN ISSUE WITH POSSIBLE DIABETES WITH HER BECAUSE, YOU KNOW, THAT ALSO RUNS IN OUR FAMILY, AND I'M HISPANIC, AND HER DAD'S DOMINICAN AND I'M GUATEMALAN, AND MY FAMILY HAS DIABETES REALLY BAD AND SO DOES HER FATHER'S SIDE, SO NOW THERE'S ANOTHER COMPLICATION IN EFFECT WITH THE SICKLE CELL, AND, YOU KNOW, IS IT GOING TO BECOME EVEN WORSE, HER SICKLE CELL.

THERE ARE SO MANY THINGS TO IT.

SHE'S A WOMAN AND NOW GOING THROUGH PUBERTY AND HITS, YOU KNOW, WHEN THE MENSTRUAL CYCLE COMES AROUND, THERE'S A WHOLE DIFFERENT THINK TO THAT, TOO.

SO IT'S A LOT.

RIGHT NOW, SHE'S AT THAT STAGE WHERE WE'RE STARTING TO LEARN WHAT'S THE NEXT THINGS THAT ARE GOING TO HAPPEN AND IT'S REALLY TOUGH ON HER.

IT'S TOUGH.

GOING TO SCHOOL IS HARD.

YOU KNOW, IT'S A CHALLENGE.

>> YEAH, I BET.

I BET, YEAH.

DIMA, YOU WERE SAYING, YOU KNOW, AMEN OVER HERE TO EVERYTHING THAT CARISSA IS TALKING ABOUT GOING THROUGH WITH HER DAUGHTER.

>> YES.

>> Haynes: I IMAGINE YOU HAVE ALL OF THESE TREATMENT OPTIONS YOU PROBABLY HAVE HAD TO GO THROUGH, SINCE YOU WERE DIAGNOSED WHEN YOU WERE SMALL, AND THEN COVID.

>> OH, YEAH.

>> Haynes: RIGHT.

>> SO I THINK COVID WAS ACTUALLY A SAVING GRACE FOR ME BECAUSE IT TAUGHT EVERYONE ELSE TO WASH THEIR HANDS, TO COVER THEIR FACE.

I DIDN'T GET SICK AS MUCH BECAUSE EVERYONE WAS BEING, YOU KNOW, CAUTIOUS AND EXTRA CAUTIOUS BECAUSE, ONCE I HAVE -- I CATCH ANYTHING, A COLD, WHATEVER, I USED TO BE IN THE HOSPITAL LIKE THAT (SNAPS FINGERS) BUT AS CARISSA WAS SAYING, SHE'S TALKING ABOUT HER 11-YEAR-OLD, WHEN I WAS 11, I HAD MY FIRST STROKE.

MY GALLBLADDER WAS REMOVED AROUND 10.

I WAS BLIND IN ONE EYE.

MY SPLEEN IS NOT WORKING.

I'VE HAD OPEN HEART SURGERY.

I'VE HAD MULTIPLE SURGERIES.

BUT I'M LOOKING -- I LOOK FINE.

SO IT'S KIND OF HARD TO NAVIGATE THE DISEASE WHILE I LOOK FINE, AND TRYING TO TELL PEOPLE THAT, NO, I'M IN A LOT OF PAIN.

I TELL PEOPLE, YOU KNOW, I HAVE TWO CHILDREN.

I HAD A CAESAREAN BIRTH, AND I HAD NATURAL CHILDBIRTH WITH MY FIRST SON.

WHEN I WAS HAVING CONTRACTIONS, I COULDN'T FEEL THEM, AND, YOU KNOW, I WAS ABSOLUTELY FINE AND MY SON'S FATHER WAS LOOKING AT THE MACHINE, AND MY CON TRACKS ARE GOING UP AND HE'S GOING CRAZY AND I'M, LIKE, DUDE, WHAT'S WRONG WITH YOU.

>> Haynes: BECAUSE OF YOUR PAIN TOLERANCE.

>> MY PAIN TOLERANCE IS RIDICULOUSLY HIGH.

I DIDN'T FEEL THE PAIN.

WHEN MY WATER BROKE, I REALIZED, HEY, I'M HAVING A BABY, BUT I WOULD RATHER HAVE TEN CHILDREN NATURALLY BEFORE GOING THROUGH A MAJOR SICKLE CELL CRISIS, IT'S THAT PAINFUL.

>> Haynes: DR. AZAR, WHEN WE'RE TALKING ABOUT COVID, WE'RE ALSO TALKING ABOUT WE HAD CRITICAL SHORTAGES OF BLOOD, AND BLOOD TRANSFUSION IS PART OF THE TREATMENT PLAN HERE.

>> MM-HMM.

>> Haynes: AND YOU COULDN'T SEE AS MANY PATIENTS THROUGH THE ER, SO IF SOMEONE WAS IN CRISIS, TALK TO ME ABOUT HAVING TO NAVIGATE THAT.

>> THAT WAS AN ENORMOUS STRUGGLE.

THE BLOOD SHORTAGE ITSELF PUT US IN A VERY DIFFICULT SITUATION, BUT EVEN WHEN WE AREN'T IN A NATIONAL BLOOD SHORTAGES LIKE THE LAST FEW YEARS, THERE AREN'T ENOUGH DONORS OF COLOR TO ACCOMMODATE OUR PATIENTS AS WELL.

BUT WHEN PATIENTS ARE GOING THROUGH WHAT DEANNA AND CARISSA'S DAUGHTER ARE GOING THROUGH, THESE ARE NOT THINGS THAT CAN BE DONE THROUGH ZOOM OR REMOTELY.

OUR PATIENTS HAVE TO COME IN AND WE HAD TO BE BOOTS ON THE GROUND THROUGH THE PANDEMIC TO MAKE SURE OUR PATIENTS GOT WHAT THEY NEEDED.

>> Haynes: REPRESENTATIVE WILLIAMS, WHEN YOU WERE TRYING TO ACCESS OR ALLOCATE RESOURCES, ESPECIALLY DURING THE PANDEMIC, DOES SICKLE CELL OR SICKLE CELL "WARRIOR" END UP ON THE LIST?

>> THEY DID.

THIS IS THE FIRST YEAR IN THE COMMONWEALTH WE ACTUALLY FUNDED SICKLE CELL, DUE TO THE GREAT WORK OF THE "WARRIORS."

THEY'RE CREATING A NEW GENE THERAPY TO TREAT SICKLE CELL.

BUT I JUST WANT TO -- THIS IS WHAT IT'S GOING TO TAKE, YOU, "BASIC BLACK," PROGRAMMING, TALKING ABOUT IT, THIS IS THE ONLY DISEASE THAT I KNOW OF THAT AFFECTS EVERY SINGLE ORGAN OF YOUR BODY.

>> YEAH.

>> Haynes: THINK ABOUT IT.

YOU MIGHT HAVE A HEART OR A LUNG CONDITION AND YOU NAVIGATE IT.

WHEN YOU HAVE A DISEASE THAT, FROM HEAD TO TOE, AFFECTS EVERY SINGLE ORGAN -- AND AS THEY WERE SAYING -- AND THAT'S WHERE THE RACIAL INEQUALITIES COME IN BECAUSE OF THE SHAME AND THE GUILT, AND THEY WERE MAKING BLACK AND BROWN PEOPLE FEEL ASHAMED IN THIS COUNTRY FOR A MIGHTY LONG TIME.

SO YOU MARRIAGE THAT, COMBINE THAT, AND YOU GET THIS MOSAIC OF THIS INDIVIDUAL THAT HAS THE SDC, SICKLE CELL.

SO WE WERE ABLE TO, DUE TO THE ADVOCACY AND THE GREAT DOCTOR, AND WE'RE GOING TO DO EVEN BETTER, GOING TO TRY TO DO BETTER.

IT'S ON THE FRONT BURNER, AND WE'RE GOING TO PUT IT ON THE FRONT BURNER BECAUSE OF THE GREAT WORK OF THE WARRIORS.

I WANT TO COMMENT YOU FOLKS -- COMMEND YOU FOLKS.

YOU HAVE A LOT OF COURAGE.

YOU ENERGIZE ME.

I'VE LEARNED SO MUCH IN THE PAST YEARS WORKING WITH MASS GENERAL AND VERITEX AND TRYING TO GET THE GENE THERAPY.

THAT'S HOW I GOT INVOLVED, BEACON HILL, FORMER SPEAKER OF THE HOUSE IS ON THERE AND DR. SANCHEZ, WAYS AND MEANS.

AND I SAID, EVEN IF WE DO GET A NEW GENE THERAPY, YOU HAVE TO APPROACH IT THE SAME WAY, THE COVID 19, OMICRON AND DELTA APPROACH, THE TRIALS, YOU HAVE TO BE THE RIGHT PEOPLE TO BE PART OF THE TRIALS.

>> AND THE MONEY.

>> AND THE MONEY.

THAT DISEASE, AS YOU KNOW, THE LIFETIME TREATMENT -- TAKE A GUESS.

>> A MILLION DOLLARS.

>> THREE TIMES THAT.

$3 MILLION.

LIFETIME TREATMENT.

IT'S VERY, VERY EXPENSIVE.

>> YEAH.

>> AND THAT'S PART OF THE PROBLEM AS WE SEE IT.

YOU KNOW, HOSPITALS ARE IN IT FOR HEALTHCARE, BUT SOME LOOK AT THE BOTTOM LINE, WHICH IS THE PROFITMAKING.

AND TREATING THIS DISEASE IS NOT PROFITMAKING.

>> SO DR. AZAR, TALK TO ME ABOUT THE TREATMENT PROGRAM WITH VERITEX.

IT'S A GENE THERAPY THAT'S TRYING TO BE DEVELOPED.

WE SPOKE EARLIER ABOUT THE TREATMENT OPTIONS ARE ARCHAIC TO SAY THE LEAST, RIGHT?

>> YES.

WE'RE EXCITED THAT THERE ARE COMPANIES LIKE VERTEX AND BLUEBIRD IN THE COMMUNITY WORKING TO FIND NEW THERAPIES BECAUSE THE ATTENTION IS FINALLY SWINGING IN FAVOR TO HELPING US DEVELOP NEW THINGS FOR SICKLE CELL DISEASE.

GENE THERAPY IS EXCITING AND WE'RE LOOKING FORWARD TO SEEING HOW IT ROLLS OUT, BUT IT'S ALSO NOT EASY TO DELIVER.

IT'S STILL A STEM CELL TRANSPLANT, AND THERE ARE STILL A LOT OF STEPS AND A LOT OF COMPLICATIONS THAT CAN GO ALONG WITH THAT.

AT THE SAME TIME, WHEN IT BECOMES AVAILABLE, IT MAY BE AVAILABLE IN THIS COUNTRY, BUT LET'S NOT FORGET THE VAST MAJORITY OF PEOPLE LIVING WITH THIS DISEASE ARE NOT IN THIS COUNTRY, AND WE HAVE A DIFFICULT ENOUGH TIME GETTING BASIC MEDICATIONS OUT TO OTHER COUNTRIES WHERE THE DISEASE IS ENDEMIC, AND WE CERTAINLY ARE NOT GOING TO BE ABLE TO BRING OUT GENE THERAPY EN MASSE.

IT WON'T BE ACCESSIBLE TO EVERYBODY LIVING IN THIS COUNTRY AS WELL.

THOSE ARE ALL THINGS TO THINK ABOUT.

>> Haynes: THERE ARE MULTIPLE TYPES OF SICKLE CELL, AND I DON'T THINK PEOPLE REALIZE THAT AS WELL.

>> THAT'S RIGHT.

WHEN WE USE THE MEMORY SICKLE CELL DISEASE, IT'S AN UMBRELLA TERM.

WE'RE TALKING ABOUT SOMEONE WHO HAS ONE COPY OF HEMOGLOBIN S AS WELL AS SOMETHING ELSE, AND THAT SOMETHING ELSE COULD BE ANOTHER COPY OF HEMOGLOBIN, IS, AND THAT WE SAUL SICKLE CELL ANEMIA, BUT WHEN IT'S PARTNERED WITH BETA THALASSEMIA OR HEMOGLOBIN C, THOSE ARE ALL SUBTYPES TO HAVE THE DISEASE.

UNFORTUNATELY, EVEN THOUGH THE TEXTBOOKS TELLS YOU ONE SUBTYPES BEHAVE ONE WAY AND NOT THE OTHER, IN REAL PRACTICE, REGARDLESS OF THE PATRONS, REGARDLESS OF THE SUBTYPE, THEY SEEM TO HAVE THE SAME COMPLICATIONS.

WE DON'T HAVE THE KNOWLEDGE TO GENOTYPE, PHENOTYPE THESE PATIENTS.

IN OTHER DISEASES LIKE HEMOPHILIA, A NATIONAL EFFORT HAS BEEN PUT IN PLACE TO GENOTYPE-PHENOTYPE THESE PATIENTS.

IF YOU HAVE THIS, THIS IS HOW WE PREDICT YOUR DISEASE.

NOTHING LIKE THIS FOR SICKLE CELL.

>> Haynes: DIMA AND CARISSA, WHEN YOU GO TO THE ER, THERE ARE SERIOUS BARRIERS TO ENTRY.

YOU WERE TELLING ME RECENTLY, I KNOW WHAT MY DAUGHTER NEEDS, SHE'S IN AN EMERGENT SITUATION, AND YOU WERE SEEING THOSE BARRIERS IN THE HEALTHCARE SYSTEM.

>> YEAH, SO, I DON'T HAVE THE SICKLE CELL, MY DAUGHTER HAS IT.

BUT I'M SURE DIMA UNDERSTANDS WHERE I'M COMING FROM WITH THIS, WE DON'T WANT TO GO TO THE HOSPITAL.

WE'RE TIRED TO HAVE THE HOSPITAL AND THE CLINIC, SO WE TRY OUR BEST AT HOME TO MANAGE EVERYTHING AT HOME.

THE PROBLEM IS, SOMETIMES IT DOESN'T WORK AT HOME AND WE NEED I.V.

MEDICATION FOR THE PAIN.

OXYGEN IS REQUIRED.

SEVERAL THINGS.

SO, YES, WE GO TO THE EMERGENCY ROOM, AND IT'S LIKE, YEAH, OKAY, WE'RE HERE.

MY DAUGHTER NEEDS SOME I.V.

PAIN MEDICATIONS, AND WE DON'T GET THAT RIGHT AWAY.

SHE'S IN EX EXCRUCIATING PAIN AND WE'RE WAITING OVER HALF AN HOUR, OKAY.

SOMETIMES, YOU KNOW, YOU'RE SUPPOSED TO CALL THE HEMATOLOGIST ON CALL, AND THEY'RE SUPPOSED TO PUT OUT, OKAY, THIS FAMILY IS COMING IN, THIS IS WHAT NEEDS TO BE DONE, AND SO ON, AND WE'RE SUPPOSED TO BE BROUGHT RIGHT IN.

WE'RE AT RISK, WE CAN'T SIT OUT, ESPECIALLY WITH THE COVID.

WITH COVID, YOU CAN'T SIT OUT IN THE WAITING ROOM.

MIND YOU, THIS MEANS, IF YOU'RE SICKLING, YOUR RED BLOOD CELLS ARE NOT TRAVELING THROUGH YOUR BODY.

YOU'RE LACKING OXYGEN TO YOUR MAJOR ORGANS.

SO IT'S NOT JUST PAIN, IT'S THE LACK OF OXYGEN.

SO WHAT HAPPENS IS, WE'RE THERE AND WE'RE STILL BEING PUT TO WEIGHT TO BE SEEN, AND WE SHOULDN'T BE BECAUSE THE DOCTOR ALREADY CALLED, THE HEMATOLOGIST ALREADY CALLED AND SAID, HEY, WHEN THIS FAMILY GETS THERE, THEY NEED TO BE PUT INTO A ROOM RIGHT AWAY AND THIS IS WHAT NEEDS TO GET DONE, AND IT DOESN'T HAPPEN THAT WAY.

SOMETIMES WE COME IN AND IT'S ALL RIGHT, LET ME GIVE YOU MOTRIN RIGHT NOW.

NO, EXCUSE ME, DOCTOR.

NO, I DID THAT ALREADY AT HOME.

I DIDN'T COME HERE FOR MOTRIN.

WE CAME HERE BECAUSE WE NEED I.V.

MEDICATION AND I NEED IT ASAP.

SHE'S IN EXCRUCIATING PAIN.

>> Haynes: EXACTLY.

HOW DO YOU MANAGE THAT?

>> I CAN'T REALLY EXPRESS THE PTSD AND THE TRAUMA THAT HAPPENS IN THE EMERGENCY ROOM.

THE LAST TIME I WAS AT THE EMERGENCY ROOM, I WAS -- I WALKED IN, YOU KNOW, I WAS ABLE TO ARTICULATE MY PAIN, I WAS ABLE TO ARTICULATE THE NUMBER, SAID THESE THINGS WEREN'T WORKING AT HOME, BUT I CAN FEEL MY BODY STARTING TO GET INTO A MAJOR CRISIS, AND IT WAS GETTING WORSE.

TWO HOURS LATER, MY HUSBAND HAD TO HELP CARRY ME INTO THE TRIAGE AREA.

SO, I MEAN, NOT BEING BELIEVED, NOT BEING HEARD, NOT BEING VALIDATED.

THE VERY ESSENCE OF WHAT MAKES ME FEEL LIKE A HUMAN BEING OR WOMAN IS STRIPPED AWAY FROM ME EVERY TIME I GO TO THE EMERGENCY ROOM.

SO I AVOID GOING THERE AT ALL COSTS.

THAT'S SOMETHING, IN ADDITION TO THE RESEARCH, WE ALSO FEED TO TALK ABOUT THE MENTAL HEALTH ASPECT OF SICKLE CELL DISEASE.

>> ESPECIALLY IF YOU'RE MENTIONING PTSD.

DOCTOR, HOW DO WE DO BETTER IN THE SYSTEM?

>> SO THIS REQUIRES A TOP-DOWN CHANGE.

YOU KNOW, THERE ARE FEDERAL RESOURCES IN PLACE FOR OTHER CHRONIC CONGENITAL DISEASES.

IT IS SHAMEFUL WE DON'T HAVE THE SAME KIND OF RESOURCES FOR SICKLE CELL DISEASE.

SO THERE IS A SIGNIFICANT POLITICAL COMPONENT FOR THIS AS WELL.

BUT OUR HEALTHCARE SYSTEM ALSO NEEDS TO LEARN TO DO BETTER, BEGINNING WITH RECOGNIZING THE ENDEMIC HEALTHCARE RACISM IN OUR SYSTEM.

ONCE WE DO THAT WE CAN REALIZE OUR SICKLE CELL WARRIORS WHEN THEY COME IN.

THE OTHER THING IS HOW THIS AFFECTS PEOPLE ON THEIR DAILY LIVES, THEY LOSE THEIR JOBS, CAN'T GO TO SCHOOL AND THEIR LIVES ARE COMPLETELY CHANGED.

WE AS A CENTER HAVE TO TRY TO PROVIDE RESOURCES FOR PATIENTS JUST TO GET TO CLINIC EVERY DAY.

THESE ARE RESOURCES THAT OUR SOCIETY SHOULD BE ABLE TO PROVIDE FOR OUR PATIENTS, SHOULD NOT BE FALLING ON INDIVIDUAL HOSPITAL TEAMS TO BE ABLE TO EVEN DO SOMETHING AS SIMPLE AS AN UBER RIDE INTO CLINIC.

>> REPRESENTATIVE WILLIAMS, HOW DO WE LEGISLATE TO DO BETTER, RIGHT?

>> WE'RE ATTEMPTING TO DO THAT NOW, BY WORKING WITH HOUSE AND SENATE LEADERSHIP, AND THE U.S. SENATE CORY BOOKER HAS FILED INTERESTING LEGISLATION FEDERALLY TO, AS THE DOCTOR WAS SAYING, HOPEFULLY GET SOME FUNDING, AND WE HAVE TO JUST MAKE IT A TOP PRIORITY.

IT HAS TO BECOME A PRIORITY.

IT HAS NOT BECOME A TOP PRIORITY.

I WOULD SUGGEST IT'S BECAUSE IT AFFECTS BLACK AND BROWN PEOPLE PRIMARILY, AND THAT'S A PROBLEM.

SO WE'LL CONTINUE TO FIGHT ON BEACON HILL.

WE'RE LOOKING FOR MORE FUNDING THIS YEAR, AND WORKING WITH THE FEDERAL GOVERNMENT, HOPEFULLY LEGISLATION THAT CORY BOOKER FILED WILL PASS THE HOUSE AND THE SENATE AND CREATE WHAT THE DOCTOR IS SAYING.

IT'S THE EVERYDAY PIECE THAT I THINK THE MASS SICKLE CELL WARRIORS WANTED TO GET IT ACROSS.

EVERY DAY THEY GO THROUGH THIS -- YOU CAN'T GO TO SCHOOL, YOU CAN'T WORK, YOU CAN'T SHOP, YOU CAN'T WATCH YOUR KIDS, YOU CAN'T -- REALLY, YOU'RE PARALYZED, IN A SENSE.

SO, CERTAINLY, WE WANT TO DO THE GLOBAL THING, WHICH IS A GENE TREATMENT AND MORE TREATMENT, BUT WE HAVE TO HAVE THAT EVERYDAY KIND OF SERVICES.

>> WELL, I WANT TO THANK YOU ALL SO MUCH FOR HAVING THIS CONVERSATION WITH US, AND, UNFORTUNATELY, THAT'S THE END OF OUR BROADCAST AND THE END OF OUR SHOW.

THANK YOU SO MUCH FOR JOINING US TODAY.

NOW, STAY WITH US AS WE CONTINUE THIS CONVERSATION ON OUR DIGITAL PLATFORMS, Facebook AND YouTube.

HAVE A GREAT NIGHT.

CAPTIONED BY MEDIA ACCESS GROUP AT WGBH ACCESS.WGBH.ORG