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

Board and Commission Details

Meeting Information

The Advisory Council shall meet at least four times

Contact Name

Illinois Department of Healthcare and Family Service

Function

The Advisory Council on Financing and Access to Sickle Cell Disease Treatment and Other High-Cost Drugs and Treatment ("Advisory Council") is established for the purpose of advising 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 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

Term

Members of the Advisory Council shall serve at the will of the Governor. If there is a vacancy for any cause, the Governor shall make an appointment to become immediately effective. The Advisory Council shall sunset on December 31, 2024.

Qualifications

The Advisory Council shall consist of diverse stakeholders that represent the goals and population described in this executive order, to be appointed by the Governor. Members should be geographically diverse to represent the needs of urban, suburban, and rural communities across Illinois. Members should include state subject matter experts and may include national experts. HFS may include any State agency staff they deem necessary as ex officio, non-voting members of the Advisory Council.

Compensation

The two members with lived expertise may be provided an honorarium to reimburse them for their time, not to exceed $250 per meeting.

Composition

The Advisory Council, to be appointed by the Governor, shall consist of: a. The Director of HFS, or their designee, who shall serve as chair. b. One member representing the Illinois Department of Public Health. c. One member representing the Illinois Department of Insurance. d. One member representing the Governor’s Office of Management and Budget. e. One member with lived experience as a person with sickle cell disease. f. One member with lived experience as a person with a condition requiring access to new, innovative drugs or treatment. g. One member representing providers treating sickle cell disease patients. h. One member representing providers treating patients with another condition requiring access to new, innovative drugs or treatment. i. Two members with expertise in prescription drug rebate negotiations and outcomes-based agreements. j. Two members with published research in financing new, innovative drugs and treatments within public health insurance programs. k. Two members with health economist or actuarial backgrounds. l. One member representing sickle cell disease advocacy organizations. m. One member representing advocacy organizations for a condition(s) requiring access to new, innovative drugs and treatment. n. Two members representing the health insurance industry. o. Two at-large members, who may or may not meet the qualification requirements for the other appointees. HFS may include any State agency staff they deem necessary as ex officio, non-voting members of the Advisory Council. Illinois Department of Healthcare and Family Service shall provide administrative support to the Advisory Council.

Chair

The Director of HFS, or their designee

Authority

Executive Order 2024-1


Member Names

Name Member Expiration Member Since Affiliation Appointed By Position Title County
Vacant Governor Member, Chair The Director of HFS, or their designee,
Vacant Governor Member representing the Illinois Department of Public Health.
Vacant Governor Member representing the Illinois Department of Insurance
Vacant Governor Member representing the Governor’s Office of Management and Budget.
Vacant Governor Member lived experience as a person with sickle cell disease
Vacant Governor Member lived experience as a person with a condition requiring access to new, innovative drugs or treatment
Vacant Governor Member representing providers treating sickle cell disease patients.
Vacant Governor Member representing providers treating patients with another condition requiring access to new, innovative drugs or treatment.
Vacant Governor Member expertise in prescription drug rebate negotiations and outcomes-based agreements
Vacant Governor Member expertise in prescription drug rebate negotiations and outcomes-based agreements
Vacant Governor Member published research in financing new, innovative drugs and treatments within public health insurance programs
Vacant Governor Member published research in financing new, innovative drugs and treatments within public health insurance programs
Vacant Governor Member health economist or actuarial backgrounds
Vacant Governor Member health economist or actuarial backgrounds
Vacant Governor Member representing sickle cell disease advocacy organizations
Vacant Governor Member representing advocacy organizations for a condition(s) requiring access to new, innovative drugs and treatment
Vacant Governor Member representing the health insurance industry
Vacant Governor Member representing the health insurance industry
Vacant Governor Member at-large members, who may or may not meet the qualification requirements for the other appointees
Vacant Governor Member at-large members, who may or may not meet the qualification requirements for the other appointees