Illinois Department of Healthcare and Family Services Cell and Gene Therapy (CGT) Access Model - Illinois is committed to increasing access to Cell and Gene Therapies (CGTs), including the new sickle cell disease (SCD) CGTs. In March 2024, Governor JB Pritzker issued Executive Order 2024-01, which created the Advisory Council on Financing and Access to Sickle Cell Disease Treatment and Other High-Cost Drugs and Treatment (Advisory Council). The CGT Access Model aligns with the Advisory Council’s December 2024 Report Recommendations to the Illinois Department of Healthcare and Family Services (HFS), Illinois’ single state Medicaid agency, and the Pritzker Administration’s priority to develop sustainable financing for high-cost therapies that support access to these life-changing treatments. The Illinois Department of Healthcare and Family Services (HFS) is requesting $9.55 million in award funding to implement required and optional CGT Access Model activities. The award will fund HFS staff to implement the Model, research to evaluate Medicaid customer access to SCD CGTs and the effectiveness of various wraparound services and supports in increasing access, and Community Based Organization (CBO) infrastructure and activities to provide wraparound services and supports to Medicaid beneficiaries with SCD and Model beneficiaries, including educating patients with SCD, providers, and community health workers about SCD CGTs and Medicaid’s covered services; conducting screenings and referrals to services to address patient access barriers; directly resolving documented access barriers related to the preparation for, receipt of, or follow-up care for gene therapy medical appointments, including supporting non-Medicaid covered access to childcare, transportation, meals, and lodging; and assigning or referring patients with SCD to care coordination, patient navigation, community health workers, or peer support services. Research under the Model will be used by HFS and the CBO to inform how wraparound services and supports are implemented over the course of the Model, with research-informed adjustments made to ensure award funding is used to address access barriers and support access to care most effectively. HFS is aligned with CMS’ goal for the Model: testing whether a CMS-led approach to developing and administering outcomes-based agreements for CGTs improves Medicaid beneficiary access to innovative treatment, improves health outcomes for Medicaid beneficiaries, and reduces and stabilizes state costs for these life-changing treatments. To achieve this goal, HFS will use award funding to support implementation of this Model, improve access to the Model CGTs, Medicaid-covered benefits, and non-Medicaid covered wraparound services and supports that address barriers, and fund research that will assess access and the effectiveness of wraparound services to inform the implementation of wraparound services and supports over the course of the Model.
