Illinois to Create Advisory Council for Affordable Sickle Cell Treatment

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)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)

Gov. J.B. Pritzker on Monday signed an order to create an advisory council to examine how Illinois’ Medicaid program can help cover costs of emerging gene therapies that effectively treat sickle cell disease and other rare disorders.

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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. People with sickle cell disease have an average lifespan about 20 years shorter than those without it, according to the American Society of Hematology.

“Though the cause of sickle cell disease has been known for nearly 70 years, funding for research has too often been neglected and overlooked by foundations and governments,” Pritzker said.

In December, the Food and Drug Administration approved the first gene therapies to treat sickle cell disease. They cost between $2 million and $3 million dollars per patient.

Pritzker said Illinois Medicaid covers over 50% of patients with sickle cell disease.

“The cost of treatment — over $2 million — leaves it inaccessible,” he said.

The council will deliver recommendations on financing models to the Illinois Department of Healthcare and Family Services by the end of the year.

“Those who are suffering from these diseases won’t have to wait a generation before they can access these groundbreaking cures. Indeed, I hope they won’t have to wait more than a year,” Pritzker said.

The council will also look at other high-cost drugs and treatments.

“Gene and cell therapies are rapidly being developed for other debilitating diseases, too, and each one will likely present the same cost challenges here in Illinois,” Pritzker said. “That’s not going to stop us from trying to make these treatments affordable for everyone.”

The 20-person task force would be made up of representatives of interest groups, advocacy organizations, multiple state agencies, researchers, two individuals living with sickle cell disease and another disease requiring access to innovative treatment, and others that are appointed by the governor.

Capitol News Illinois is a nonprofit, nonpartisan news service covering state government. It is distributed to hundreds of print and broadcast outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation, along with major contributions from the Illinois Broadcasters Foundation and Southern Illinois Editorial Association.


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