File photo of a person getting a blood transfusion. (WTTW News)

Sickle cell disease affects about 5,000 people across Illinois — and it’s mostly impacting Black communities. While gene therapies have emerged to treat the disease, high costs can limit access.

Gov. J.B. Pritzker signs an executive order March 18, 2024, alongside 7-year-old Kioko Jenkins, who has sickle cell disease, at La Rabida Children’s Hospital in Chicago. The order creates an advisory council to investigate how Illinois’ Medicaid program can help cover costs of emerging gene therapies. (Dilpreet Raju / Capitol News Illinois)
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About 5,000 Illinoisans live with sickle cell disease, a gene defect most common in Black people that causes red blood cells to be misshapen and die off early, resulting in chronic fatigue and pain. 

Jalen Matthews sits on her yoga mat in her home in Louisville, Ky., Monday, Dec. 4, 2023. She was diagnosed with sickle cell at birth and had her first pain crisis at age 9. Three years later, the disease led to a spinal cord stroke that left her with some paralysis in her left arm and leg. “I had to learn how to walk again, feed myself, clothe myself, basically learn how to do everything all over again,” said Matthews, who is now 26. (Timothy D. Easley / AP Photo)

Regulators on Friday approved two gene therapies for sickle cell disease that doctors hope can cure the painful, inherited blood disorder that afflicts mostly Black people in the U.S.

A promising new treatment for sickle cell anemia, developed by the National Institutes for Health and validated by a new study by the University of Illinois at Chicago, holds out the prospect of a cure for this chronic disease. Dr. Santosh Saraf, one of the co-authors of the UIC study, joins us to discuss these groundbreaking developments.