Pritzker signs executive order to enhance access to groundbreaking therapies

Gov. J.B. Pritzker took action Monday by signing an executive order aimed at establishing a framework to finance and enhance access to groundbreaking therapies and medications, such as the recently endorsed gene therapies for sickle cell disease.

This move comes as a response to the need for new financial arrangements to ensure fair access to these innovative treatments, ultimately aiming to boost health outcomes for residents of Illinois.

The executive order entrusts the Illinois Department of Healthcare and Family Services (HFS) with spearheading the state's initiative to develop payment models and financial frameworks supporting access to emerging treatments for sickle cell disease and other high-cost drugs and therapies under the Illinois Medicaid program.

Additionally, it establishes the Advisory Council on Financing and Access to Sickle Cell Disease Treatment and Other High-Cost Drugs and Treatment, tasked with offering input to HFS as the department formulates innovative and sustainable financing models. The Council is slated to deliver a set of recommendations by Dec. 31, 2024.

"Historically we’ve seen breakthrough treatments end up out of reach for everyday Americans — strictly because of their cost," said Pritzker. "My goal is to make emerging and transformative gene and cell therapy treatments affordable and available to all Illinoisans who need them. If we can narrow the affordability gap, those who are suffering from these diseases won’t have to wait a generation before they can access these groundbreaking cures."

Sickle cell disease comprises a set of inherited blood disorders, impacting over 5,000 residents in Illinois.

Over 40 percent of Illinois residents diagnosed with sickle cell disease rely on Medicaid for health insurance coverage. Additionally, nearly half of Illinois Medicaid beneficiaries with sickle cell disease suffer from severe forms of the condition.

In December 2023, the FDA approved a gene therapy for sickle cell disease. The list price for a single course of the treatment is $2.2 million.