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Elizabeth M. Whitehorn, Director

Advisory Council on Financing and Access to Sickle Cell Disease Treatment and Other High-Cost Drugs and Treatment

This Advisory Council shall:

Advise HFS in the development of payment models and financing structures for sickle cell disease treatment and other high-cost drugs and treatment that support equitable access and contribute to national efforts to formulate solutions.

a. Engage in a robust effort that considers the input of subject matter experts, providers, insurers, drug manufacturers, and Medicaid customers living with sickle cell disease or other conditions requiring access to high-cost drugs and treatment.

b. Review innovative approaches establishing sustainable payment models and financing structures for high-cost drugs and treatment, with a focus on value and outcome-based models.

c. Evaluate the success and challenges of various value and outcome-based payment approaches implemented in other states.

d. Make recommendations on financing approaches that could be adopted in Illinois and/or nationally with the support of the federal Centers for Medicare & Medicaid Services (CMS).

e. Identify any state and federal policy, legal, regulatory, and resource changes necessary to successfully implement the Advisory Council’s recommendations

f. Provide leadership for and collaborate with those working to make sickle cell disease treatments and other high-cost drugs and treatment accessible.

g. Promote effective interagency collaboration and consider related efforts federally and in other states when drafting policy options related to financing, with a focus on ensuring equitable access to sickle cell disease treatment and other high-cost drugs and treatment in the Illinois Medicaid program

h. Develop a report to be delivered to the Governor and the General Assembly by December 31, 2024. The report shall evaluate options for financing new cell and gene therapies and other high-cost drugs and treatment and monitoring patient outcomes within the Medicaid program and shall recommend strategies to equitably provide access to new treatments within the program.