CRYSTAL: HI, EVERYBODY.

I AM CRYSTAL HAYNES.

TONIGHT, THE CASES OF SICKLE-CELL DISEASE AND BLACK AND BROWN PEOPLE HIGHLIGHTS THE DIRE STRAIT OF HEALTH EQUITY HERE IN THE U.S. WE WILL TAKE A LOOK AT HOW THE DISEASE IS IMPACTING THAT COMMUNITY AND HOW WE CAN HELP.

PLUS, HAVE THE GOVERNMENT AND THE MEDIA FAILED THE RESIDENTS OF EAST PALESTINE, OHIO AFTER A TRAIN DERAILED AND SENT HARMFUL CHEMICALS INTO THE AIR?

INEQUITY IS EVERYWHERE WHEN IT COMES TO HEALTH AND HEALTH CARE IN THIS COUNTRY.

BUT FEW CASES ARE AS STARK AS THAT OF SICKLE-CELL DISEASE, A PAINFUL AND DEBILITATING BLOOD DISORDER THAT PRIMARILY AFFECTS BLACK PEOPLE.

SICKLE-CELL DISEASE, WHICH CONTORTS RED BLOOD CELLS LEADING TO BLOCKAGES, ORGAN DAMAGES, AND IT AFFECTS AN ESTIMATE IS 73 OUT OF EVERY 1000 BLACK INFANTS, MORE THAN 10 TIMES HIGHER THAN ANY OTHER RACIAL GROUP.

AND WHILE WE HAVE KNOWN ABOUT THIS PAINFUL AND DEBILITATING CONDITION FOR MORE THAN A CENTURY, TREATMENT OPTIONS ARE STILL EXTREMELY LIMITED, AND RESEARCH OFTEN GOES UNDERFUNDED.

RIGHT NOW I AM JOINED BY DR. SHARL AZAR, THE MEDICAL DIRECTOR OF THE COMPREHENSIVE SICKLE-CELL DISEASE TREATMENT CENTER AT MASS GENERAL HOSPITAL.

AND CARISSA JUAREZ, A PATIENT AMBASSADOR FOR THE MASSACHUSETTS SICKLE-CELL ASSOCIATION WHOSE 11-YEAR-OLD DAUGHTER HAS SICKLE-CELL DISEASE.

WELCOME.

CARISSA, WHEN WE SPOKE TO YOU ABOUT BOOKING YOU FOR YOUR SHOW, YOU SAID YOUR DAUGHTER IS IN SICKLE-CELL CRISIS AS WE SPEAK.

WHAT IS THAT LIKE FOR FOLKS WHO DO NOT QUITE UNDERSTAND WHAT IT IS FOR FAMILIES TO GO THROUGH THIS?

CARISSA: IT IS REALLY TOUGH.

I'’M A SINGLE MOM WITH FIVE CHILDREN.

AND SHE IS THE ONLY ONE THAT HAS SICKLE-CELL DISEASE.

SO, IT'’S HARD TO MANAGE WITH ALL THE CHILDREN.

I HAVE TO BRING HER IN.

THIS TIME SHE DID NOT GET ADMITTED THROUGH THE EMERGENCY ROOM, WHICH NORMALLY SHE WOULD.

SHE WAS DIRECTED THROUGH HER CLINIC TO GET PAIN RELIEF BUT IT DID NOT WORK, SO THEY HAD TO ADMIT HER FOR MORE IV PAIN MEDICATION.

SHE HAS BEEN THERE SINCE LAST WEDNESDAY AND SHE IS STILL THERE, STILL IN A LOT OF PAIN.

UNFORTUNATELY I CANNOT BE THERE, BECAUSE I AM WITH MY OTHER CHILDREN RIGHT NOW.

IT IS TOUGH BECAUSE IT IS TRAVELING BACK AND FORTH TO THE HOSPITAL, ALSO MANAGING THINGS AT HOME.

I JUST WANT TO MAKE SURE SHE IS GETTING THE RIGHT CARE ALSO WHILE SHE IS IN THE HOSPITAL, AND IT IS KIND OF HARD WHEN I CANNOT BE THERE PHYSICALLY.

BUT I AM WORKING AS MUCH AS I CAN TO MAKE SURE EVERYTHING IS GOING FINE.

IT IS REALLY TOUGH.

I FEEL BAD THAT I CANNOT BE NEXT TO HER RIGHT NOW, AND SHE IS IN A LOT OF PAIN.

CRYSTAL: I CAN ONLY IMAGINE.

WE HAVE BEEN TALKING ABOUT HOW TREATMENT PLANS AND OPTIONS ARE VERY LIMITED.

DR. AZAR, I READ ABOUT A MONTH AGO THAT SOME GENE THERAPIES CAME ONLINE AS A POSSIBILITY, BUT I IMAGINE THOSE ARE VERY EXPENSIVE.

WE KNOW ABOUT BONE MARROW TREATMENTS, OR TRANSPLANTS, THAT IS AN OPTION.

BUT I IMAGINE THE EXCESS PEACE HAS TO BE TOUGH, FOR SOMETHING AS COMPLICATED AS THAT TYPE OF PROCEDURE IS.

DR. AZAR: YOU ARE ABSOLUTELY RIGHT.

WHILE WE ARE VERY EXCITED ABOUT THE PROSPECT OF GENE THERAPY, WE ARE EXCITED THOSE ARE COMING DOWN THE PAIPELINE IN SHORT ORDER, ACCESS WILL BE AN ISSUE GOING FORWARD.

EVEN IF THESE WERE TO BECOME STANDARD OF CARE HERE IN THE U.S., THE VAST MAJORITY OF PEOPLE LIVING WITH SICKLE-CELL DISEASE LIVE OUTSIDE OF THE UNITED STATES.

IT IS HARD ENOUGH ALREADY TO BE ABLE TO GET THOSE PATIENTS ACCESS TO BASIC MEDICATIONS TO TREAT THEIR DISEASE.

IT IS HARD ENOUGH TO DO THAT HERE IN THE U.S.

IT WILL ALSO BE HARD TO DETERMINE WHO IS SELECTED FOR GENE THERAPY UPFRONT, WHO WOULD AND WHO WOULD NOT BENEFIT.

THERE ARE A LOT OF UNANSWERED QUESTIONS, INCLUDING ULTIMATELY WHAT THE COST IS GOING TO BE FOR PATIENTS.

WE ANTICIPATE IT WILL BE EXPENSIVE.

CRYSTAL: I ALSO KNOW THAT ACCESS TO JUST A TREATMENT WE HAVE, PAIN MEDICATION, WHICH SEEMS TO BE THE MOST COMMON AND THE ONE THAT IS THE MOST SUCCESSFUL, CAN OFTEN BE A CHALLENGE.

I HAVE HAD CONVERSATIONS WITH YOU, CARISSA, ABOUT HOW DIFFICULT IT CAN BE TO GET ACCESS TO THAT PAIN MEDICATION WHEN YOUR CHILD IS IN PAIN, IS HURTING.

CARISSA: IT IS.

SEVERAL TIMES WE HAVE BEEN TO THE EMERGENCY ROOM WHERE THEY ARE LIKE, LET'’S GIVE HER SOME IBUPROFEN AND OXYCODONE.

I SAID IF THAT WAS THE CASE I WOULD HAVE STAYED HOME.

SHE NEEDS MORE THAN THAT.

WE ARE NOT COMING HERE FOR THAT.

WE CAN DO THAT AT HOME.

WE ARE HERE BECAUSE WE NEED IV PAIN MEDICINE.

IT IS TOUGH UNFORTUNATELY, EVEN AS A CHILD.

IT IS HARDER FOR ADULTS AND TEENAGERS.

BUT AS A CHILD THAT IS LIKE, I DO NOT KNOW WHAT IS GOING THROUGH SOME OF THEIR MINDS.

BUT TO GO THERE AND PRESENT MY DAUGHTER, AND SHE IS HAVING A CRISIS, AND HAVING TO WAIT SOMETIMES MORE THAN 60 MINUTES TO JUST BE SEEN, OK?

AND THERE ARE RULES AND POLICIES IN PLACE THAT YOU ARE SUPPOSED TO ALREADY BE IN A ROOM AND ACCESSED IF YOU NEED AN IV IN PLACE, AND ALREADY HAVE PAIN MEDICINE GOING THROUGH YOU WITHIN 60 MINUTES.

UNFORTUNATELY, THIS IS NOT HAPPENING IN THE EMERGENCY ROOMS.

THE STAFF IS NOT EVEN TRAINED TO ACCESS PORTS.

MY DAUGHTER HAS A PORT BECAUSE SHE HAS BLOOD EXCHANGE TRANSFUSIONS, AND THEY DON'’T HAVE TRAINED NURSES IN THE EMERGENCY ROOM FOR THIS.

SO THIS IS A PROBLEM.

AND THEN WHEN WE ARE THERE, TO GET THE PAIN MEDICINE, YES, THERE'’S A PROBLEM A LOT TO GET PAIN MEDICINE.

YOU KNOW, I DO NOT KNOW IF IT IS JUST IGNORANCE, I REALLY DO NOT KNOW, BUT MY DAUGHTER IS NOT HERE BECAUSE SHE WANTS TO GET HIGH ON SOMETHING.

OK?

SHE IS HERE BECAUSE SHE NEEDS THIS MEDICATION.

WE HAVE ALREADY TRIED EVERYTHING WE COULD AT HOME.

SO, IT IS TOUGH.

EVEN WHEN SHE IS INPATIENT, I FEEL LIKE SOMETIMES SHE IS RUSHED.

LIKE, GET OUT.

I'’M HAVING SOMEWHAT OF AN ISSUE RIGHT NOW WHERE SHE WAS IN ON WEDNESDAY AND ALREADY ON FRIDAY WE ARE LIKE, OK WE ARE GOING TO PUT HER BACK ON ORAL MEDICATION.

I HAD TO EXPLAIN TO THEM, YES, WE CAME IN ON WEDNESDAY WITH BACK PAIN, BUT THAT SAME DAY, EVEN OF THAT BACK PAIN HAS EXISTED FOR A FEW DAYS, SHE STARTED SICKLE IN HER FOOT.

THAT MEANS BY DAY THREE SHE IS AT HER PEAK.

THERE IS A PEAK WE GO.NOW SHE IS IN MORE PAIN .

I DO NOT WANT TO PRESSURE.

I TRIED TO EXPLAIN THIS.

EVERY PATIENT IS DIFFERENT, BUT WITH HER, WE WILL GO A FEW DAYS WHERE IT IS PAIN THAT SHE CAN HANDLE, THEN THE PAIN GETS HIGHER AND HIGHER, THEN IT STARTS TO COME DOWN AND DOWN.

GIVEN HER BACK WAS ALREADY HURTING BUT HER FOOT JUST STARTED HURTING THE DAY OF ADMISSION, THAT FOOT IS GOING TO GET WORSE.

I TRIED TO EXPLAIN AND THAT IS WHAT HAPPENED.

BUT IT IS CHALLENGING, IT IS REALLY CHALLENGING.

CRYSTAL: I CAN IMAGINE.

CARISSA -- DR. AZAR, HOW DIFFICULT IS IT TO HAVE THESE CONVERSATIONS WITH OTHER HEALTH CARE PROFESSIONALS, LIKE YOU HAVE MOMS LIKE CARISSA WHO SAY WE ARE AT A 10, BUT THEIR HOSPITAL PROCEDURES THAT MAY BE CONTRADICTED THAT.

THERE ARE PERHAPS TRAINING EXPERIENCE THAT MAY BE CONTRADICTED THAT.

HOW DO YOU HAVE CONVERSATIONS IN A HEALTH CARE SPACE AMONG PROFESSIONALS LIKE THIS?

DR. AZAR: SUCH A GREAT QUESTION.

YOU CAN HEAR THE FRUSTRATION IN CARISSA'’S VOICE, VERY APPROPRIATE FRUSTRATION.

WE HAVE TO HAVE THIS CONVERSATION ALMOST EVERY SICKLE TIME A PATIENT COMES INTO THE HOSPITAL.

WE HAVE TWO DEDICATED NURSE NAVIGATORS.

OFTEN TIMES WITH A HAVE TO DO IS GO TO THE BEDSIDE IN THE EMERGENCY DEPARTMENT OR ON THE FLOOR, AND HOLD THE PATIENT'’S HAND WHILE ASKING THE NURSES TO PLEASE PUSH AN ADDITIONAL DOSE OF PAIN MEDICATION.

I CAN UNDERSTAND WERE SOME OF MY COLLEAGUES COME FROM.

MANY OF OUR PATIENTS ARE ON HIGHER DOSES OF OPIATES AND THEY MAY BE UNCOMFORTABLE, NOT USED TO THOSE CONCERT DOSES.

IT ALL COMES DOWN TO EDUCATION.

A LOT OF WHAT WE ARE TRYING TO DO IS HELP OUR COLLEAGUES UNDERSTAND OUR PATIENTS HAVE BEEN ON THESE PAIN MEDICATIONS SINCE THEY WERE INFANTS, IN MANY CASES.

AND THEY ARE VERY USED TO THESE DOSES OF MEDICATIONS.

SO WE ATTEMPT TO TRY TO NORMALIZE THAT AS MUCH AS WE CAN.

AT THE SAME TIME, THERE'’S AN ENORMOUS RACIAL BY ANTS -- RACIAL BIAS.

AND WE HAVE TO HELP OTHER PROVIDERS OFTENTIMES COME TO TERMS WITH THEIR OWN RACIAL BIASES AS THEY ARE TREATING PATIENTS.

CRYSTAL: I KNOW THERE ARE ALSO DIFFERENT TYPES OF SICKLE-CELL DISEASE, AND I THINK A LOT OF FOLKS DO NOT REALIZE THAT.

WILL YOU SPEAK A LITTLE BIT ABOUT THAT?

DR. AZAR: YEAH, THERE ARE SEVERAL SUBTYPES OF SICKLE-CELL DISEASE.

WHEN WE TALK ABOUT SICKLE-CELL ANEMIA, WE TALK ABOUT INHERITING TWO COPIES OF HEMOGLOBIN S, THE FORM THAT LEADS TO THE DISEASE.

THERE ARE OTHER SUBTYPES WITHOUT HEMOGLOBIN S IS PAIRED WITH SOME OTHER MUTATION.

HEMOGLOBIN IS THE PROTEIN THAT ALLOWS OUR BODIES TO CARRY OXYGEN IN OUR RED BLOOD CELLS.

SO THERE ARE VARIATIONS ON THE DISEASE BASED ON WHAT THE MUTATIONS ARE.

THE TEXTBOOKS WILL TELL US THAT SOME OF THESE SUBTYPES ARE SUPPOSED TO BE LESS SEVERE THAN OTHER SUBTYPES.

BUT I OFTENTIMES TOSS THAT ASIDE WHEN I'’M TALKING TO THE STUDENTS OR RESIDENTS.

I FOUND PATIENTS WHO HAVE IT SUBTYPES THE TEXTBOOKS WILL TELL YOU ARE LESS SEVERE HAVE EVERY BIT AS MANY COMPLICATIONS AS MY PATIENTS WILL HAVE WITH A SUBTYPE OF THE DISEASE THOUGHT TO NOT BE MOST SEVERE.

CRYSTAL: DOES THAT CHANGE THE WAY TREATMENT IS APPLIED, DEPENDING ON WHAT SUBTYPE OF THE DISEASE YOU HAVE?

DR. AZAR: TO SOME EXTENT, YES.

THERE ARE SOME SUBTYPES OF THE DISEASE THAT AFFECT ORGANS DIFFERENTLY.

THERE IS ONE PARTICULAR SUBTYPE THAT AFFECTS THE EYES AND THE BONES MORE THAN OTHER SUBTYPES OF THE DISEASE.

HEMOGLOBIN SS DISEASE SEEMS TO BE MORE PRONE TO CAUSING NEUROLOGICAL COMPLICATIONS.

SO, WE THINK ABOUT THEM IN TERMS OF THE COMPLICATIONS ASSOCIATED WITH THE SUBTYPES.

BUT AT THE END OF THE DAY I TRY AND DEEMPHASIZE THAT AS MUCH AS POSSIBLE WHEN TALKING TO MY COLLEAGUES, BECAUSE I WANT MY PATIENTS WITH SICKLE-CELL DISEASE TO BE TREATED THE SAME REGARDLESS OF WHAT SUBTYPE THEY HAVE.

CRYSTAL: CARISSA, I KNOW THAT YOU ARE ABSOLUTELY THE NUMBER ONE HEALTH MOM ADVOCATE, MOMI CATE, FOR YOUR DAUGHTER.

HOW DO YOU TRY TO KEEP HER LIFE AS NORMAL AS POSSIBLE AT 11 YEARS OLD?

CARISSA: IT IS TOUGH.

I TELL YOU, I RECENTLY HAD TO TRANSFER HER OUT OF A SCHOOL THAT SHE WAS IN BECAUSE THEY WERE EXCLUDING HER FROM A LOT OF THINGS AND SHE WAS PUT INTO A CLASSROOM, A VERY SMALL CLASS WITH STUDENTS WHO WERE ALSO DISABLED.

BUT SHE JUST FELT LIKE SHE WASN'’T PART OF THE OTHER STUDENTS.

LIKE, NOT HAVING A NORMAL LIFE.

AND SHE LOOKED SO DEPRESSED ALL THE TIME COMING HOME FROM SCHOOL.

AND SO, I TRIED TO GO OVER THE IEP WITH THEM AND TRY TO NEGOTIATE WITH THEM, LET'’S PUT HER IN A DIFFERENT CLASSROOM AND STUFF.

IT JUST DID NOT WORK OUT.

SO I DID TRANSFER HER OUT OF HER THAT -- OUT OF THAT SCHOOL AND PUT HER INTO THE PUBLIC SCHOOL SYSTEM, AND THEY ARE AWESOME.

THEY HAVE DONE A GREAT JOB.

SHE IS IN A BIGGER CLASSROOM, SHE HAS A 121 HEALTH A -- HAS A ONE-TO-ONE HEALTH AIDE BECAUSE OF STROKES AND STUFF LIKE THAT.

SHE HAS SUFFERED A MINOR STROKE BEFORE.

AND IF SHE NEEDS A WHEELCHAIR AT SCHOOL.

I TRY TO KEEP HER AT SCHOOL AS MUCH AS SHE CAN, SO SHE WILL HAVE SOMEONE THERE TO SUPPORT HER.

BUT THEY ARE GREAT.

SHE HAS BEEN HAPPY.

LIKE, SHE HAS A HUGE SMILE ON HER FACE NOW.

I FEEL LIKE AN ELEPHANT HAS COME OFF OF MY CHEST.

THEY ARE AWESOME.

THEY ALL WORK TOGETHER, THEY ARE ALREADY GETTING HER PREPARED FOR MIDDLE SCHOOL, TALKING TO THE NURSES THERE.

IT HAS BEEN GREAT.

IT IS A CHALLENGE.

IT IS CHALLENGING BECAUSE ANOTHER THING IS, SHE CANNOT BE IN THE SNOW, SHE CANNOT BE IN THE HOT WEATHER, CANNOT BE A COLD POOL.

WE HAVE SIBLINGS AND THEY WANT TO HAVE ALL THIS FUN TOO, AND I FEEL BAD BECAUSE YOU CANNOT DO ALL THESE THINGS.

SO WE TRY AND DO THINGS LIKE SHAVING CREAM MIX WITH BAKING SODA TO DO SNOW IN THE HOUSE.

OR WE WILL TRY TO FIND OTHER THINGS THAT WE CAN DO.

TAKING INTO CONSIDERATION, I AM A MOM WHO IS NOT WORKING BECAUSE I AM CONSTANTLY TAKING CARE OF JALYSSA.

SO IT'’S HARD FOR ME TO FINANCIALLY AFFORD OTHER THINGS TOO.

REALLY, THIS IS A REALLY TOUGH THING.

LIVING WITH SICKLE-CELL DOES NOT ONLY AFFECT THE PATIENT, IT AFFECTS EVERYONE ELSE SURROUNDING HER.

HER FAMILY, HER FRIENDS, HER SIBLINGS ARE ALWAYS SAD AND DEPRESSED.

THIS IS SCHOOL VACATION, WE ARE SUPPOSED TO BE HAVING FUN ALTOGETHER, AND SHE IS IN THE HOSPITAL.

WE WERE GOING TO TRY THE AQUARIUM AND EVERYTHING AND IT IS LIKE, WE CANNOT DO THIS RIGHT NOW.

I FEEL BAD TO TAKE EVERYONE ELSE, AND SHE IS NOT THERE.

CRYSTAL: THERE HAS BEEN A CONVERSATION WHERE THERE IS A BILL IN CONGRESS NOW TO PROVIDE MORE AID FOR SERVICES, AND A CONVERSATION AROUND HAVING THAT BOTH ON THE NATIONAL SIDE, BUT ALSO RIGHT HERE IN MASSACHUSETTS.

DR. AZAR IN THE LAST MOMENT WE HAVE HERE, HOW HELPFUL WOULD THAT BE FOR FAMILIES LIKE CARISSA'’S?

DR. AZAR: IT IS ENORMOUSLY HELPFUL.

WE HAVE AN ON THEM IS BILL IT HAS BEEN MESSAGE -- INTRODUCED TO THE MASSACHUSETTS STATE LEGISLATURE WE HOPE TO GET THROUGH THIS SESSION.

IF IT GETS THROUGH, NOT ONLY WOULD IT ALLOW RESOURCES TO BE GIVEN TO SICKLE-CELL PROGRAMS AROUND THE STATE, BUT IT WOULD ALSO HELP TO PROP UP THE COMMUNITY-BASED ORGANIZATIONS LIKE THE MASS SICKLE-CELL ASSOCIATION THAT ARE WORKING HARD TO TRY AND NORMAL ON THE LIVES OF PATIENTS LIKE CARISSA'’S DAUGHTER.

BUT AT THE SAME TIME, IT WOULD ALSO HELP NORMALIZE THE LAWS AROUND OPIATE MANAGEMENT AND PRESCRIPTION DRUGS.

SO MANY BARRIERS THAT HAVE BEEN PUT UP THAT REALLY REQUIRE A TOP-DOWN APPROACH.

THIS IS A GREAT WAY TO BE ABLE TO DO THAT RIGHT HERE IN MASSACHUSETTS.

CRYSTAL: EXCELLENT.

I WANT TO THANK YOU BOTH FOR YOUR TIME.

DR. AZAR, CARISSA JUAREZ, AND GOOD LUCK TO YOUR LITTLE GIRL.

IN THE WEEKS SINCE A TRAIN DERAILED AND CAUGHT FIRE IN EAST PALESTINE, OHIO, SENDING PLUMES OF BLACK SMOKE AND HAZARDOUS TOXINS INTO THE AIR, RESIDENTS WHO RETURNED TO THE AREA HAVE REPORTED A GROWING LIST OF ELEMENTS, FROM RASHES AND NAUSEA, TO DIFFICULTY BREATHING.

IN SPITE OF THOSE COMPLAINTS, THE EPA SAYS AIR AND WALLY QUEST -- WATER QUODDY TEST DO NOT SHOW DANGEROUS TOXINS IN THE AIR, TELLING THE PEOPLE IN EAST PALESTINE THE AIR IS SAFE TO BREATHE AND THE WATER IS SAFE TO DRINK.

BUT IS IT REALLY, AND HAS MEDIA ACROSS THE COUNTRY BEEN GIVING THIS DISASTER THE ATTENTION IT DESERVES?

TO DISCUSS IT I AM JOINED BY DR. DANA BARR, A PROFESSOR OF ENVIRONMENTAL HEALTH AT EMORY UNIVERSITY, AND MIREILLE BEJJANI , THE COEXECUTIVE DIRECTOR OF SLINGSHOT, A NONPROFIT THAT WORKS WITH COMMUNITIES IMPACTED BY ENVIRONMENTAL THREATS.

GOOD EVENING.

SO, FIRST, I WANT TO TALK ABOUT WHAT A TRAIN THE REALM IT AND OF COURSE THIS SUBSEQUENT CHEMICAL SPILL, WHAT KIND OF EFFECT DOESN'’T ACTUALLY HAVE ON THE ENVIRONMENT FOR FOLKS WHO COULD NOT QUITE UNDERSTAND THE SCOPE OF THIS?

DR. BARR: RIGHT.

THESE LARGE CHEMICAL SPILLS ARE REALLY DANGEROUS TO BOTH THE ECOLOGY AND PEOPLE.

THESE ARE CHEMICALS THAT ARE HIGHLY TOXIC.

THEY ARE CARCINOGENS, CAN CAUSE PROBLEMS OR FETUSES IN UTERO.

SO THERE'’S JUSTIFIED CONCERN IN THE AREA.

AND I THINK THE BIG DISCONNECT FROM WHAT THE PEOPLE ARE BEING TOLD AND WHAT THEY ARE OBSERVING IS CAUSING A LOT OF UNCERTAINTY AND PROBLEMS WITH UNDERSTANDING IF THE GOVERNMENT IS BEING TRUTHFUL OR NOT WITH THEM.

CRYSTAL: MIREILLE, WHEN YOU HAVE THESE CONVERSATIONS WITH COMMUNITIES THAT ARE AFFECTED BY SOMETHING LIKE THIS, I MEAN, WHAT IS THE NUMBER ONE THING, HOW DO WE KEEP OURSELVES SAFE, AND CAN WE TRUST OFFICIALS WHEN IT TELL US EVERYTHING IS SAFE?

MIREILLE: THAT IS A GREAT POINT YOU ARE TOUCHING ON, IS THAT COMMUNITIES, ESPECIALLY ENVIRONMENTAL JUSTICE COMMUNITIES THAT HAVE BEEN IMPACTED TIME AND TIME AGAIN, ARE NOT NECESSARILY QUICK TO TRUST WHEN SOMEONE TELLS THEM SOMETHING BECAUSE THEY HAVE BEEN IMPACTED SO MANY TIMES.

THEY HAVE BEEN POTENTIALLY LIED TO BY CORPORATIONS, THEY HAVE BEEN MISLED.

AND SO TRANSPARENCY AND TRUST BUILDING ARE TREMENDOUSLY IMPORTANT AND BUILDING THOSE RELATIONSHIPS SO THAT THEY CAN KNOW THAT THEY ARE BEING CARED FOR AND THAT THE GOVERNMENT AND THE COMPANY AND ALL THE PLAYERS HERE ARE REALLY CAREFULLY MONITORING THE SITUATION, NOT JUST NOW, BUT NEXT WEEK AND NEXT MONTH AND NEXT YEAR AND BEYOND THAT, BECAUSE THIS SITUATION IS NOT JUST A ONE AND DONE DEAL.

IT WILL BE POTENTIALLY IMPACTING THOSE COMMUNITIES FOR DECADES TO COME.

CRYSTAL: DR. BARR, WHAT WOULD BE HAPPENING ON THE GROUND RIGHT NOW?

I KNOW NEWS CAMERAS ARE CAPTURING FOLKS, BUT WHAT WOULD BE HAPPENING ON THE GROUND?

DR. BARR: RIGHT NOW THE OFFICIALS ARE TRYING TO CONTAIN THE CHEMICALS THAT ARE THERE.

THEY HAVE DONE A CONTROLLED BURN, THEY ARE MONITORING THE CHEMICALS THEMSELVES IN THE AIR.

PARTICULATE MATTER AND OTHER NOXIOUS FUMES THAT MIGHT BE CREATED AS A RESULT OF THE CONTROLLED BURN.

THEY ARE DOING THE RIGHT THINGS BUT I'’M NOT SURE IT IS QUITE ENOUGH.

PEOPLE CAN SEE THAT THERE ARE FISH DYING OR CHICKENS DYING IN THE AREA AND THEY ARE DEVELOPING A LOT OF HEALTH OUTCOMES, OR HEALTH SYMPTOMS THEY BELIEVE ARE RELATED TO THESE EXPOSURES.

AS I MENTIONED BEFORE, THERE IS A DISCONNECT IN WHAT THEY ARE SEEING AND WHAT THEY ARE BEING TOLD.

THE POTENTIAL HAZARDS FOR THESE CHEMICALS ARE HIGH.

CRYSTAL: I WROTE A FEW ARTICLES OF FOLKS IN RHODE ISLAND, THEY FELT LIKE THEY SMELLED SOMETHING OR SAW A FOG IN THE AIR, AND THOUGHT IT WAS CONNECTED TO THIS TRAIN DERAILMENT AND CHEMICAL SPILL.

THE LOCAL EPA OFFICIALS HAVE SAID THAT THEY ARE NOT CONNECTED, BUT I IMAGINE THAT FEELING OF DISBELIEF, BASICALLY OUT OF CONCERN, STILL LINGERS.

AND SO, MIREILLE, HOW DO YOU TALK TO COMMUNITIES ABOUT ENGAGING THEIR OFFICIALS IN A WAY THAT IS MEANINGFUL AND THEY CAN GET THE ANSWERS THAT THEY WANT?

MIREILLE: IT'’S AN IMPORTANT THING THAT COMES TO PLAY IN 70 DIFFERENT ISSUES RELATED TO ENVIRONMENTAL JUSTICE COMMUNITIES.

WE HAD -- SLINGSHOT SENT OUT AN EMAILED TO OUR LIST ABOUT THIS DERAILMENT, AND WE HAD SEVERAL FOLKS WHO RESPONDED AND SAID, HOW CAN WE TRACK WHERE THE PLUME HAS GONE?

DO YOU KNOW WHAT THE LATEST INFORMATION IS?

AND THAT IS A BIG THING WITH A LOT OF ENVIRONMENTAL JUSTICE SITUATIONS, IS A LACK OF TRANSPARENCY, A LACK OF INFORMATION BEING EASILY ACCESSIBLE TO THE PUBLIC.

THAT IS WHERE RESIDENTS AROUND HERE CAN ASK THEIR IMMISCIBLE OFFICIALS, ASK THE LOCAL EPA STATE HOLDERS FOR THAT INFORMATION IN A WAY THEY CAN EASILY UNDERSTAND AND MAKE DECISIONS BASED OFF OF AS INDIVIDUAL RESIDENTS IN COMMUNITIES AROUND HERE.

HAVING THAT INFORMATION IS ONE OF THE BEST WAYS TO EMPOWER PEOPLE TO MAKE DECISIONS FOR THEIR OWN HEALTH.

CRYSTAL: DR. BARR, BEING A JOURNALIST FOR MORE THAN 20 YEARS, I KNOW THAT THESE STORIES ARE VERY DIFFICULT TO EXPLAIN AND SCIENCE CAN GET LOST ON FOLKS.

DO YOU THINK THAT THE MEDIA IS EXPLAINING THE SCOPE OF THE IMPACT OF THIS DERAILMENT TO THE FOLKS THAT ARE IN OHIO, BASICALLY ON A NATIONAL SCALE?

DR. BARR: I THINK THEY ARE DOING A GOOD JOB EXPLAINING WHAT THEY KNOW AND WHAT THEY HAVE BEEN TOLD.

I THINK THE QUESTION IS, IS THERE SOMETHING MORE LINGERING THAT WE HAVE NOT BEEN TOLD AND DO NOT KNOW ABOUT?

I KNOW PEOPLE CAN GOOGLE THESE CHEMICALS AND SEE ALL THE HARMFUL IMPACTS THAT THEY HAVE, AND THEY CAN SEE WHAT IS GOING ON AROUND THEM.

THEY CAN SEE THESE PLUMES OF SMOKE AND IDENTIFY THAT THERE IS SOME KIND OF TOXIC ELEMENT THAT THEY ARE BREATHING IN, OR IS GETTING INTO THEIR WATER.

IT IS REALLY IMPERATIVE THAT WE HAVE A LONG-TERM FOLLOW-UP ON THIS AND THAT THE GOVERNMENT HAS A HISTORY OF GOING IN, TRYING TO DO A QUICK FIX.

I THINK THIS WILL REQUIRE SOME LONG-TERM FOLLOW-UP TO ENSURE THE LEVELS ARE DECLINING OR ARE LOW ENOUGH TO BE SAFE FOR THE COMMUNITY.

THEY NEED TO FOLLOW UP ANY POTENTIAL OUTCOMES AS WELL.

CRYSTAL: MIREILLE, HOW CAN THE MEDIA BE PARTNERS IN THIS DISSEMINATION OF INFORMATION THAT OBVIOUSLY IS A PUBLIC NEED IN A SITUATION LIKE THIS?

MIREILLE: THAT IS A REALLY IMPORTANT PART OF MAKING SURE INFORMATION IS ACCESSIBLE, IS THE OUTLETS THAT PEOPLE GO TO TO LEARN ABOUT THINGS.

I KNOW I PERSONALLY DID NOT HEAR ABOUT THIS STORY FOR A FEW DAYS AFTER IT HAPPENED IN BIG OUTLETS.

I WAS MOSTLY SEEING ABOUT IT ON INSTAGRAM AND OTHER SOCIAL MEDIA PLATFORMS.

AND SO, I THINK MEDIA OUTLETS REALLY TAKING THE TIME TO SHARE WHAT IS HAPPENING ON THE GROUND AND SHARE THE FIRST-HAND PERSPECTIVES OF RESIDENTS IN EAST PALESTINE AND SURROUNDING COMMUNITIES, I THINK THAT IS ALSO SOMETHING THAT WE REALLY CONNECT WITH ON A HUMAN LEVEL, IS HEARING HOW SOMEONE ELSE IS EXPERIENCING SOMETHING AND BEING ABLE TO RELATE TO IT FROM OUR OWN LENS.

SO, THAT IS A REALLY POWERFUL THING THAT OUTLETS CAN PROVIDE, IS SHARING THOSE FIRST-HAND EXPERIENCES AS THIS SITUATION CONTINUES TO UNFOLD.

CRYSTAL: I IMAGINE ALSO KEEPING IN THE NEWS CYCLE IS IMPORTANT AS WELL, BOTH FOR ACCOUNTABILITY AND FOR FOLKS WHO WILL CONTINUE TO LIVE WITH THIS.

MIREILLE: DEFINITELY.

AS DR. BARR HAS MENTIONED, THIS IS NOT GOING TO BE DONE TOMORROW, OR EVEN JUST A FEW MONTHS FROM NOW.

SO, KEEPING EYES ON THIS, MAKING SURE THAT PEOPLE ARE AWARE WHAT THE LATEST SITUATION IS, WHAT THE LATEST LEVELS ARE FROM MONITORING, WHAT THE LATEST HEALTH OUTCOMES ARE LOOKING LIKE, ACCOUNTABILITY IS A HUGE THING THAT IS OFTEN LACKING WHEN IT COMES TO IMPACTS ON FRONTLINE COMMUNITIES.

AND BIG WAY TO ENSURE ACCOUNTABILITY IS MAKE SURE THERE IS TRANSPARENCY AND INFORMATION THAT IS AVAILABLE, SO THAT PEOPLE CAN FOLLOW UP WITH DECISION-MAKERS WHO ARE NOT HOLDING UP THEIR END OF THE BARGAIN.

CRYSTAL: DR. BARR, WE KNOW THAT THIS PARTICULAR SITUATION HAPPENED IN EAST PALESTINE.

BUT WILL SURROUNDING COMMUNITIES , EVEN SURROUNDING STATES, HAVE TO WORRY ABOUT THIS IN YEARS TO COME?

DR. BARR: POSSIBLY.

THE CHEMICALS CAN LEACH INTO THE GROUND, INTO SOIL, INTO GROUNDWATER, THEY CAN TRAVEL OVER LONG DISTANCES.

RIGHT NOW WITH THIS CONTROLLED BURNING, THEY HAVE A PLUME OF SMOKE THAT CAN BE OBSERVED IN OTHER PLACES.

MY SISTER-IN-LAW LIVES IN PITTSBURGH AND SAYS SHE CAN SEE SOME OF THE SMOKE FROM THE BURN.

SO YES, OTHER COMMUNITIES HAVE TO BE CONCERNED IF THE CHEMICALS ARE NOT ADEQUATELY CONTAINED.

AGAIN, IT IS GOING TO HAVE TO BE SOMETHING THEY CONTINUE TO LOOK AT AND ASSURE THE PEOPLE WHO LIVE THERE THAT THE LEVELS ARE LOW ENOUGH NOT TO CAUSE ANY HARM, OR TO DO SOMETHING ABOUT IT IF THEY ARE HIGHER.

CRYSTAL: MIREILLE, WHAT CAN FOLKS DO TO MAKE SURE THEY STAY PLUGGED IN?

WE ALREADY MENTIONED REACHING OUT TO PUBLIC OFFICIALS, BUT I IMAGINE THERE ARE OTHER CHANNELS THEY CAN STAY PLUGGED INTO WHAT IS HAPPENING DAILY.

YOU MENTIONED INSTAGRAM, IT SEEMS LIKE THAT IS WHERE FOLKS ALSO GO.

BUT IT CAN ALSO BE A PLACE OF DISINFORMATION, AND THAT CAN BE A CONCERN AS WELL.

MIREILLE: I THINK A BIG THING HERE, AS WITH SO MANY OTHER SITUATIONS WHERE SOMETHING BIG HAPPENS IN OUR COUNTRY, IS TO FIND TRUSTED COMMUNITY ORGANIZATIONS ON THE GROUND WHERE THIS IS HAPPENING.

TO FOLLOW, TO SUPPORT.

I AM NOT CURRENTLY DIRECTLY AWARE OF SPECIFIC ORGANIZATIONS, BUT I AM SURE THERE ARE A NUMBER OF GROUPS IN EAST PALESTINE AND SURROUNDING AREAS THAT ARE ENGAGING IN MUTUAL AID TO SUPPORT RESIDENTS THERE, THAT ARE ENGAGING IN SHARING THEIR PERSPECTIVE OF WHAT IS HAPPENING.

AND I THINK THEY CAN BE REALLY POWERFUL WAYS TO GET INVOLVED OR TO HEAR THE LATEST, OR OFFER SUPPORT, WHETHER THAT IS TIME OR RESOURCES OR AMPLIFYING WHAT IS HAPPENING.

I THINK A GOOD WAY TO GO ABOUT THAT IS TO FIND SOME TRUSTED LOCAL GROUPS OF RESIDENTS WHO ARE WORKING TO SUPPORT EACH OTHER AND OTHERS THROUGH THIS SITUATION.

CRYSTAL: DR. BARR, IN THE LAST FEW SECONDS THAT WE HAVE, WHAT WOULD BE THE LESSONS LEARNED FROM THIS AS YOU SEE GOING FORWARD WHEN WE ARE TALKING ABOUT THESE DANGEROUS CHEMICALS ON THESE TRAINS GOING THROUGH COMMUNITIES?

DR. BARR: THEY HAVE TO BE MORE CAREFUL ABOUT TRANSPORTING THESE CHEMICALS, WHETHER THEY ARE BY RAIL OR BY CAR.

SOME OF THESE ARE VERY HAZARDOUS CHEMICALS IN THAT FORM, AND THEY CAN CAUSE A LOT OF PROBLEMS.

WE'’VE HAD A LOT OF PREVIOUS TRAIN DERAILMENTS OR CHEMICAL SPILLS THAT SHOULD HAVE GIVEN US INFORMATION ABOUT HOW TO BETTER CONTAIN THE CHEMICALS AND TO ENSURE THEY ARE NOT GETTING SPREAD OUT.

SO HOPEFULLY SOME OF THAT INFORMATION IS BEING APPLIED TO THIS SITUATION RIGHT NOW.

BUT AGAIN, I JUST WANT TO EMPHASIZE THAT WRONG TERM -- LONG-TERM FOLLOW-UP IS NECESSARY TO ENSURE THE COMMUNITY IS SAFE ON A LONG-TERM BASIS.

CRYSTAL: WE WILL LEAVE THE CONVERSATION THERE.

DR. DANA BARR AND MIREILLE BEJJANI, THANK YOU SO MUCH FOR YOUR TIME.

THAT IS IT FOR TONIGHT.

WE WILL BE BACK TOMORROW.

THANK YOU SO MUCH FOR WATCHING.

I AM CRYSTAL HAYNES.

GOOD NIGHT.

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