CHICAGO — State Senator Mattie Hunter joined Governor JB Pritzker on Monday as he signed an executive order to create a framework for financing and expanding access to new and transformative therapies and drugs, such as the recently approved gene therapies for sickle cell disease.

"For too long, many residents of our state have grappled with the effects of sickle cell disease and the financial challenges associated with seeking necessary treatment," said Hunter (D-Chicago). "I would like to thank Governor Pritzker for signing this executive order to bring both awareness to this disease and action in ensuring equitable access to treatments."

The executive order tasks the Illinois Department of Healthcare and Family Services with leading the state's effort to establish payment models and financial structures that support access to new sickle cell disease treatments and other new high-cost drugs and treatment within the Illinois Medicaid program. The order also creates an advisory council to provide input as HFS develops innovative and sustainable financing models. The council will deliver a set of recommendations by Dec. 31, 2024.

Sickle cell disease is a group of lifelong, inherited blood disorders that affect more than 5,000 Illinois residents. Sickle cell disease disproportionately affects people of color — an estimated one in every 365 Black Americans and one in every 16,300 Latino Americans.

More than 40% of the Illinois residents who have been diagnosed with sickle cell disease are enrolled in Medicaid for their health insurance coverage, and nearly half of Illinois Medicaid customers with sickle cell disease have a severe form of the disease.

"The cost of managing sickle cell disease is staggering. We’re talking tens of thousands of dollars out of pocket over a person’s lifetime to cover hospitalizations, blood transfusions and other long-term care," Hunter added. "For those who are already struggling to make ends meet, proper care can be out of reach."