DISEASE AFFECTS ABOUT 5,000 PEOPLE ACROSS ILLINOIS.

AND IT'S MOSTLY IMPACTING BLACK COMMUNITIES.

NOW THE INHERITED DISEASE, A CURSE WHEN HEALTHY RED BLOOD CELLS BECOME SICKLE SHAPED.

AND STEPH, WHICH CAN LEAD TO ANEMIA AND OTHER HEALTH PROBLEMS.

AND WHILE GENE THERAPIES HAVE EMERGED TO TREAT THE DISEASE, THE HIGH COSTS CAN LIMIT THEIR ACCESS.

BUT A NEW STATE ADVISORY COUNCIL IS LOOKING TO ADDRESS THIS BY EXAMINING HOW ILLINOIS'S THE MEDICAID PROGRAM CAN HELP COVER EXPENSES.

>> FAIRNESS DEMANDS THAT AS PROGRESS IS MADE, WE DO EVERYTHING IN OUR POWER TO MAKE THOSE TREATMENTS AND CURES ACCESSIBLE TO EVERYONE.

WE'LL BE WORKING WITH THE FEDERAL GOVERNMENT WHICH HAS A SIMILAR EFFORT THROUGH.

SHE MS TO SOLVE FOR THESE CHALLENGES.

MY GOAL IS TO MAKE EMERGING AND TRANSFORMATIVE GENE AND CELL THERAPY TREATMENTS AFFORDABLE AND AVAILABLE FOR ALL ILLINOISANS WHO NEED >> JOINING US NOW WITH MORE OUR RENEE SHAW AT RITZ ELLIOTT ADVOCACY WORK OR WITH THE SICKLE CELL DISEASE ASSOCIATION OF ILLINOIS AND ALSO A SICKLE CELL PATIENT.

AND DOCTOR A LOWKEY FROM THE UAE HEALTH DIVISION OF HEMATOLOGY AND ONCOLOGY.

SPECIAL SPECIALIZES IN THE TREATMENT OF SICKLE CELL DISEASE.

THANK YOU BOTH SO MUCH FOR JOINING US FOR A NEW SHOW.

LET'S START WITH YOU.

AND NOW WE JUST HEARD GOVERNOR PRITZKER AND HIS GOALS THAT HE HAS FOR THE COUNCIL.

WHAT ARE SICKLE CELL DISEASE ADVOCATES HOPING TO SEE FROM THIS AND HOW DO THEY HOPE TO BE INVOLVED?

YES, GREAT QUESTION.

I BELIEVE SICKLE CELL PATIENTS.

>> REALLY FELT LIKE THIS WAS A MAJOR WIN FOR OUR COMMUNITY, NOR THE DISPARITIES THAT WE FACE IS PATIENTS.

AND SO I BELIEVE THAT THIS ADVISORY COMMITTEE IS BEGINNING STEPS TO FOR NEEDED EQUITY SICKLE CELL DISEASE.

SO WE ARE LOOKING FORWARD TO BEING A PART OF THIS COMMITTEE.

WE HOPE THAT THIS COMMITTEE INVOLVES STAKEHOLDERS LIKE OUR FAILED SCHOOL, HAVE REALLY BEEN ADVOCATING FOR A VERY LONG TIME FOR THIS DISEASE.

WE'VE GOT A LOT OF THINGS SUCH AS LIVE AGAIN.

WE'VE GOT A LOT OF THINGS SUCH AS RAISING AWARENESS ABOUT THE DISPARITIES THAT EXIST IN A SICKLE CELL DISEASE.

AND WE WOULD LOVE TO CONTRIBUTE TO ACCESS TO CARE AND UNDERSTANDING HOW COSTS AND FEASIBILITY OUR MAJOR THINGS FOR THIS DISEASE.

WHAT IMPACT DO YOU SEE THIS HAVING ON THOSE THAT ARE LIVING WITH THE DISEASE IS I BELIEVE THAT PEOPLE WOULD WANT THIS IS WILL NOW FEEL LIKE THEIR VOICES ARE BEING HEARD.

SOMETIMES THE KELSO DISEASE MAKE YOU FEEL SILENT AND INVISIBLE BECAUSE OF THE MANY COMPLICATIONS AND BECAUSE OF THE AMOUNT OF PEOPLE THAT THE FAKE 100,000 DOESN'T LIKE MANY.

BUT WHEN WE LOOK AT THE RACE, THE RACE CITY OF THOSE WHO ARE IMPACTED, THERE ARE MANY OF US WHO ARE LIVING IN THIS IN THIS STRUGGLE.

AND SO FOR THE COMMUNITY, IT FEELS LIKE OUR VOICES WILL FINALLY BE ELEVATED IN.

PEOPLE WILL UNDERSTAND WHAT WE ARE EXPERIENCING NOW.

DOCTOR MOOKIE, WE MENTIONED A LITTLE BIT OF HOW SICKLE CELL DISEASE CHANGES THE STRUCTURE OF RED BLOOD CELLS.

>> BUT CAN YOU EXPLAIN THE GREATER AND PACK SAID IT HAS ON SOMEONE'S SO INTERESTING THAT IN OUR DNA WE HAVE THINGS CALLED NUCLEOTIDE PEERS, 3 BILLION OF THEM IN EACH CELL.

>> THERE'S A CHANGE IN ONLY ONE OF 3 BILLION THAT ACTUALLY CAUSES SICKLE CELL DISEASE.

AND SO WHAT HAPPENS?

IT WAS ORIGINALLY THOUGHT THAT IT DEVELOPED IN ORDER TO HELP PROTECT YOU FROM DYING FROM MALARIA, WHICH IS STILL A REALLY COMMON DISEASE IN THE WORLD.

DO NOT VERY COMMON IN THE UNITED STATES.

AND SO WHAT HAPPENS IS HEMOGLOBIN, WHICH IS THIS MOLECULE, THE THIN RED BLOOD CELLS AUCTION TO THE CELLS.

IT ALLOWS THE HEMOGLOBIN TO FORM LONG CHAINS AND ONE SUCH FORM IN THESE LONG CHAINS.

IT STARTS AT DAMAGE AND THE INSIDE OF THE CELL.

IT MAKES THESE LONG CHANGE BECAUSE THE SHAPE CHANGE.

SO LOOKS LIKE A SICKLE AND THEN IT ALSO BURSTS OPEN THE CELL.

SO WE MAKE 2 MILLION RED CELLS A SECOND, THIS 250 MILLION OF THESE MOLECULES THEM AND EVOLVED TO HAVE NICE NORMAL RED CELL THERE.

WHEN ALL THESE THINGS COMPLYING OUT BECAUSE JUST CATASTROPHIC TO PEOPLE.

SO THERE IS NO WALK IN THAT IN SOME MANNER IS UNAFFECTED THE UNITED STATES AND IN DEVELOPED ECONOMIES.

THAT'S ACTUALLY PRETTY WITH BEST CARE RIGHT NOW THAT WE KNOW PEOPLE HAVE AT LEAST A 20 YEAR DECREASE.

EX-WIFE EXPECTANCY COMPARED TO PEOPLE WITHOUT THE DISEASE WORLDWIDE.

50% OF PEOPLE WITH SICKLE CELL DISEASE TYPE II.

45?

SO THIS IS HUGE IMPACT DISEASE AND SOMEONE MAY LOOK LIKE THEY'RE DOING WELL.

BUT 10 MINUTES OF THIS AIR CONDITIONED, IT'S TOO COLD HERE.

SHE CAN END UP IN THE EMERGENCY ROOM WITH THE SEVERE PAIN EPISODE.

THIS TONS OF OTHER COMPLICATIONS THAT GO ON STRESS PAIN IS MOST SIDE EFFECT OF THE DISEASE AND THE PAIN CAN BE EXCRUCIATING.

PEOPLE WILL HAVE HAD NATURAL CHILDBIRTH FEEL THAT THE PAIN FROM SO IT WORSE THAN THAT.

THERE'S ISSUES THAT WILL OCCUR SAYING THE UNITED FOR PATIENTS, THE MAJORITY OF PEOPLE IN STATES, WE HAVE 6 SUBSIDIES ARE OF AFRICAN BACKGROUND.

WORLD, THE COUNTRY WITH THE MOST NUMBER OF PEOPLE AS INDIA, ITS NORTHERN MEDITERRANEAN AND FREQUENTLY REQUIRE HIGH DOSES OPIOIDS NORTH OF CONTROL, THE PAINTING GOING INTO RIVERS AND THROUGH WEIGHT, ENDLESS HOURS, WAIT MORE HOURS THAN WHITES, WHO WILL HAVE THE SAME PROBLEM.

LOW AMOUNTS PAIN MEDICINES THAT THEY GET.

AND SO THAT STRESS STRESSES OUT THE PATIENT.

YEAH, WANT TO ASK RENEE SHOULD TELL US A LITTLE BIT ABOUT LIKE WHAT YOUR EXPERIENCE IS LIKE LIVING WITH THE DISEASE.

HE JUST KIND OF MENTIONED SOME OF EXPERIENCE.

BUT TELL US ABOUT YOUR THAT IS VERY I'VE BEEN FORTUNATE ENOUGH TO FROM POWER IN ALL OF THAT.

BUT >> STAPLES CENTER.

IS SOMETHING I WOULDN'T WISH ON MY WORST ENEMY.

I DON'T KNOW A DAY WITHOUT PAYING 50, 50 AGE OF 11.

>> AND OFTENTIMES SOMETIMES THE SICKLE CELL PATIENTS, WE CATEGORIZE OUR AND PEOPLE SAY IT'S AN INVISIBLE COMPLICATION BECAUSE YOU CAN'T SEE WHAT'S GOING POINT BORN INSIDE OF MY BODY BY JUST LOOKING AT ME, OFTENTIMES IT TAKES SOMEONE REALLY BELIEVE WHAT WE ARE EXPERIENCING TO REALLY SUPPORT AND HELP US.

BUT PRIMARILY WHAT EXPERIENCE.

I RESPECT EVERYTHING EQUITY THAT A PERSON WITH SICKLE CELL DISEASE USUALLY ENCOUNTERS, WHICH INCLUDES LONG WAIT TIMES, NOT HAVING THE APPROPRIATE MEDICATION THAT BECAUSE CORP, TREATMENT IS THE MAIN TREATMENT UNDERSTANDING THAT RIGHT NOW THERE 4 FDA APPROVED MEDICATIONS FOR THIS DISEASE.

AND OFTENTIMES WE GO THROUGH BATTLES OF INSURANCE COVERAGE AND LITERALLY JUST REALLY NOT FEELING NORMAL AS A PERSON FEELING LIKE I HAVE TO CHOOSE BETWEEN.

MY WILL NEWS AND WHO I WANT TO BE.

THOSE ARE JUST A LITTLE SOME OF THE THINGS THAT EXPERIENCED THAT THE PATIENT.

>> NOW, DOCTOR MOOKIE, CAN YOU EXPLAIN THE GENE THERAPY IS NOW AND IMPACT THAT THEY'RE HAVING?

SO THERE'S A FEW DIFFERENT TYPES OF GENE THERAPIES IS THERE'S ONE CALLED THE BUT CLASSIC ONE WHERE IF YOU HAVE A RELATIVE.

AND THEY CAN DO SOME TESTS TO SEE IF WOULD BE A THING CALLED THE MATCH.

IT TURNS OUT THIS PROBABLY 10, 20% OF PEOPLE WITH SICKLE CELL DISEASE HAVE THAT BECAUSE SIBLINGS HAVE A 25% CHANCE OF HAVING SICKLE CELL DISEASE DEPENDING UPON THE GENETICS OF THE THEY'RE ALSO AT HIGH RISK OF.

HAVING THE DISEASE.

AND SO NOW THERE'S NEW THERAPIES AND THIS IS THE GENE THERAPIES THAT ARE COMING ABOUT.

SO ONE OF THE THINGS IS POTENTIALLY INTERESTING IS THAT NEWBORNS WITH SICKLE CELL DISEASE DON'T APPEAR TO HAVE TOO MANY PROBLEMS.

AND THAT'S BECAUSE THERE'S A DIFFERENT HEMOGLOBIN.

THIS AUCTION CARRYING PRO TEAM THAT FETUSES HALF AND IN THE FIRST FEW MONTHS OF LIFE THAT STOPS BEING MADE AND THEN HEMOGLOBIN THAT CAUSES SICKLE CELL DISEASE.

POLICE TRUCKS INCREASES.

IT TURNS OUT THAT A LOT OF PEOPLE IN INDIA ACTUALLY HAVE ANOTHER MUTATION WHERE THEY DON'T TURN THAT SHEEN OFF.

SO THEY HAVE ENOUGH OF SOMETHING ELSE IN THE RED CELL SO THAT WHEN THE SICKLE HEMOGLOBIN LOSES OXYGEN, THE CHANCES OF THESE 2 MOLECULES HITTING DECREASES.

SO THE PATIENTS REALLY PRETTY WELL.

AND SO THERE'S A LOT OF THERAPY.

IS THIS SOME DRUGS HAVE ACTUALLY STARTED AT U OF I TO TRY TO INCREASE OF FETAL HEMOGLOBIN.

BUT NOW THERE'S THIS NEW GENE THERAPIES AND 2 OF THE ONES THAT THE ONE THAT IS APPROVED ACTUALLY INCREASES AMOUNT OF FETAL HEMOGLOBIN, A NEW SO IT DECREASES THE CELLS.

BREAKING A LAW FIRM.

THE ATION.

BELIEVE THAT REALLY IS FOR THE PRIMARY POINT THAT CAUSES.

YOU KNOW, EVERY ORGAN GOING TO FUNCTIONAL.

SO WE'RE RUNNING OUT OF TIME HERE.

BERNIE SHAW JUST WANT TO ASK YOU ONE FOLLOW-UP QUESTION.

>> YOU KIND OF TALKED ABOUT WHAT YOUR EXPERIENCE HAS BEEN LIKE A LIVING WITH THE DISEASE, BUT WHAT ADVICE WOULD YOU GIVE TO OTHERS THAT ARE THAT ARE FIGHTING?

>> KEEP THAT YOUR LIFE IS WHERE FOOD AND THAT THERE ARE ADVOCATES OUT HERE THAT WERE YOU TO FEEL FIREMEN FOR YOU DO YOU DID NOT FEEL LIKE YOUR VOICE HAS POWER.

WE BELIEVE THAT IT DOES HAVE POWER AND WE'RE GOING TO MAKE SURE THAT THIS SOCIETY HERE WITH US UNDERSTAND THE NEEDS OF THE COMMUNITY AND EXECUTIVE ORDER THAT WAS FIRED BY GOVERNOR PREPARED.

IT'S JUST THE START OF WHAT IS ON THE HORIZON FOR