TESTIMONY OF ADRIAN BOSCOLO-HIGHTOWER

ON BEHALF OF THE UNIVERSITY OF

ILLINOIS AT CHICAGO SICKLE CELL CENTER
BEFORE THE ILLINOIS GENERAL ASSEMBLY APPROPRIATIONS
HUMAN SERVICES COMMITTEE
JULY 24, 2015
ESTEEMED MEMBERS OF THE COMMITTEE, IT IS A PRIVILEGE AND HONOR
TO BE ABLE TO SPEAK BEFORE YOU TODAY. THANK YOU FOR TAKING
THE TIME OUT OF YOUR BUSY SCHEDULES TO ATTEND THIS HEARING AND
ENGAGE IN THIS IMPORTANT DISCUSSION ON SICKLE CELL DISEASE.

MY NAME IS ADRIAN BOSCOLO-HIGHTOWER AND I AM COMPLETING A

JOINT MEDICAL DEGREE & MASTER IN PUBLIC HEALTH AT THE
UNIVERSITY OF ILLINOIS COLLEGE OF MEDICINE AND SCHOOL OF PUBLIC
HEALTH. I AM HERE TODAY ON BEHALF OF A GROUP OF UNIVERSITY OF
ILLINOIS MEDICAL STUDENTS WHO ARE COMMITTED TO IMPROVING THE
HEALTH CARE AVAIALBE TO SICKLE CELL PATIENTS.

SICKLE CELL DISEASE IS THE MOST COMMON GENETIC BLOOD DISORDER

IN THE UNITED STATES, AFFECTING BETWEEN 90,000 - 100,000 PEOPLE. IN
ILLINIOS, IT IS ESTIMATED THAT 4000-5000 PEOPLE ARE AFFLICTED WITH
SICKLE CELL DISEASE. SICKLE CELL IS ALSO AMONG THE MOST LETHAL
OF GENETIC DISEASES, WITH HALF OF THOSE BORN WITH THE DISEASE
DYING BEFORE THEY ARE 50 YEARS OLD. THE DISEASE CAUSES CHANGES
IN THE SHAPE OF RED BLOOD CELLS THAT CARRY OXYGEN IN OUR BODY,

RESULTING IN A LACK OF OXYGEN AND CAUSING SEVERE PAIN EPISODES

THAT ARE UNPLANNED, UNPREDICATABLE, AND REOCCURING. OVER THE
LONG TERM, SICKLE CELL DISEAE CAN RESULT IN ORGAN DAMAGE AND
CAN CAUSE STROKES, KIDNEY FAILURE, CARDIAC FAILURE, PULMONARY
DISEASE, BONE DISEASE, AND LEG ULCERS.

ALTHOUGH THERE ARE STRONG PUBLIC HEALTH PROGRAMS TO IDENTIFY

THE DISEASE IN INFANTS, THERE IS CURRENTLY NO WIDELY ACCEPTED
CURE FOR SICKLE CELL DISEASE. WHEN CONFRONTED WITH A PAIN
EPISODE, PATIENTS ARE FORCED TO SEEK TREATMENT IN HOSPITAL
EMERGENCY ROOMS TO MANAGE THEIR EXTREME PAIN, WHICH OFTEN
RESULTS IN HOSPITALIZTION. NATIONWIDE STUDEIS HAVE FOUND THAT
THE MAJORITY OF SICKLE CELL DISEASE PATIENTS HAVE OR MAY
RECEIVE MEDICAID OR MEDICARE BENEFITS. OF THESE PATIENTS, THE
AVERAGE HOSPITAL LENGTH OF STAY IS SIX DAYS AND 40% OF PATIENTS
WERE READMITTED TO THE HOSPITAL WITHIN 30 DAYS AFTER
DISCHARGE.

WITH THE SIGNIFICANT NUMBER OF SICKLE CELL PATIENTS IN THE STATE

OF ILLINOIS, THE UNIVERSITY OF ILLINOIS AT CHICAGO SICKLE CELL
CENTER HAS BECOME A REGIONAL LEADER IN THE TREATMENT OF
SICKLE CELL PATIENTS. THE SICKLE CELL CENTER CARES FOR THE
LARGEST NUMBER OF SICKLE CELL PATIENTS IN ILLINOIS, CURRENTLY

PROVIDING CARE TO NEARLY 1000 UNIQUE ADULT AND PEDIATRIC SICKLE

CELL PATIENTS ON AN YEARLY BASIS. WITH FUNDING FROM THE
ILLINOIS DEPARTMENT OF PUBLIC HEALTH, THE SICKLE CELL CENTER
WAS ABLE TO OPEN AN OUT PATIENT ACUTE CARE INFUSION CLINIC AT
THE UNIVERSITY OF ILLINOS HOSPITAL THAT IS OPEN SIXTEEN HOURS A
DAY/FIVE DAYS A WEEK. THE ACUTE CARE INFUSION CLINIC PROVIDES A
MECHANISM FOR SICKLE CELL PATIENTS SUFFERING FROM A PAIN CRISIS
TO RECEIVE CARE IN AN OUT PATIENT SETTING AND AVOID COSTLY
EMERGENCY ROOMS. RESAERCH HAS SHOWN THAT INFUSION CLINICS
CAN REDUCE HOSPITAL ADMISSIONS.

IN ADDITION TO REDUCING THE COSTS ASSOCAITED WITH SICKLE CELL

DISEASE, THE SICKLE CELL CENTER IMPROVES THE LIVES OF PATIENTS.
KIMBERY JOHNSON, A SICKLE CELL CENTER PATIENT, WAS DIAGNOSED
WITH SICKLE DISEAE WHEN SHE WAS 12 YEARS OLD. SHE LOST TRACK OF
HOW MANY TIMES SHES BEEN TO THE HOSPITAL LONG AGO, BUT HAS
BEEN A PATIENT AT THE SICKLE CELL CENTER FOR OVER EIGHT YEARS.
IN A RECENT INTERVIEW, SHE RECOUNTED OF HOW SHE WAS TOLD AS A
CHILD THAT SHE WOULDNT LIVE PAST HER EARLY TWENTIES. NOW, AS
38 YEAR OLD, SHE ACKNOWLEDGES THAT THE SICKLE CELL CENTER
HELPED GIVE HER A QUALITY OF LIFE THAT SHE ORGINALLY DIDNT
THINK WAS POSSIBLE. IT IS THIS LEVEL OF PATIENT CARE COMBINED
WITH THE UNIQUE SUPPORT GROUPS AND DEDICATED OUTREACH

WORKERS THAT HAS HELPED ESTABLISH THE SICKLE CELLC CENTER AS A

LEADER IN SICKLE CELL TREATMENT.

DESPITE ITS IMPORTANT ROLE, THE FUTURE OF THE SICKLE CELL CENTER
IS AT RISK. IN THE MOST RECENT DRAFT OF THE APPROPRIATIONS BILL,
FUNDING FOR THE SICKLE CELL CENTER IN THE AMOUNT OF $500,000 HAS
BEEN ELIMINATED. THIS SOURCE DIRECTLY FUNDS THE ACTURE ARE
INFUSION CLINIC AND ITS ELIMINATION WOULD FORCE PATIENTS TO
SEEK CARE IN THE EMERGENCY ROOM AND GREATLY INCREASE THE
LIKELIHOOD THAT PATIENT WILL BE HOSPITALIZED, SIGNIFICANTLY
INCREASING COSTS TO STATE FUNDED INSURANCE PROGRAMS. IN ORDER
TO MAINTAIN THE HIGH QUALITY OF CARE DELIVERED TO SICKLE CELL
PATIENTS AND LIMIT COSTLY EMERGENCY ROOM VISITS AND
HOSPITALIZATIONS, WE ARE REQUESTING THAT FUNDING FOR THE
SICKLE CELL CENTER BE MAINTAINED.

ADDITIONALLY, CURRENT REGULATIONS STIPULATE THAT IF A PATIENT

IS REDADMITTED TO A HOSPITAL/MEDICAL INSTITUTION WITHIN 30 DAYS
OF DISCHARGE; THE DISCHARGING HOSPITAL/MEDICAL INSTITUION WILL
BE FINED IN THE FORM OF A REDUCTION IN REINBURSEMENT FROM THE
STATE FOR THE PATIENTS HOSPITALIZATION. ALTHOUGH THIS POLICY IS
MEANT TO INCENTIVIE HOSPITALS TO PROVIDE BETTER CARE FOR
PATIENTS, SICKLE CELL PATIENTS SUFFER FROM UNPLANNED,

UNPREDICATBLE, AND REOCCURING PAIN EPISODES THAT CAN ONLY BE

MANAGED IN A HOSPITAL SETTING REQUIRING MULTIPLE
HOSPITALIZATIONS AND READMISSIONS IN A 30-DAY PERIOD. THE
COMMITTEES APPROVAL OF HR0255, URING THE DEPARTMENT OF HEALTH
& FAMILY SERVIES TO EXEMPT SICKLE CELL FROM THE 30-DAY
READMISSION RULE WILL INSURE HOSPITALS ARE PROPERLY FUNDED TO
PROVIDE A HIGH LEVEL OF CARE TO SICKLE CELL PATIENTS.

MEMBERS OF THE COMMITTEE, I WOULD AGAIN LIKE TO THANK YOU FOR

PROVIDING ME THE OPPORTUNITY TO SPEAK BEFORE YOU TODAY.
SICKLE CELL IS A DISEASE THAT SIGNIFICANTLY IMPACTS THE LIVES OF
PATIENTS AND REQUIRES A LIFETIME OF TREATMENT. DESPITE THIS
FACT, SICKLE CELL PATIENTS SHOW A DETERMINATION AND RESILIENCE
THAT IS INFECTIONOUS AND IS THE REASON I AM HERE TODAY. THE
UNIVERSITY OF ILLINOIS AT CHICAGO SICKLE CELL CENTER IS A LEADER
IN THE STATE FOR PROVIDING HIGH QUALITY CARE TO SICKLE CELL
PATIENTS. PLEASE VOTE IN FAVOR OF REINSTATING FUNDING TO THE
SICKLE CELL CENTER AND HR0255, URGING THE DEPARTMENT OF HEALTH
AND FAMILY SERVICES TO WIAVE THE 30-DAY READMISSION RULE FOR
SICKLE CELL DISEASE. BY DOING SO, YOU WILL DIRECTLY HELP IMPROVE
THE QUIALITY OF LIFE FOR SICKLE CELL PATIENTS AND THEIR FAMILIEIS
IN THE STATE OF ILLINOIS. THANK YOU.