Prairie State Wire

The Illinois Department of Healthcare and Family Services (HFS) has released its inaugural report from the Advisory Council on Financing and Access to Sickle Cell Disease Treatment and other High-Cost Drugs. This report, required by Executive Order 2024-01, was submitted to both the Governor and the General Assembly. It assesses various value and outcome-based payment approaches used in other states, offering recommendations for financing and improving equitable access to these treatments within Illinois.

Governor JB Pritzker expressed his commitment to making advanced gene and cell therapy treatments accessible, stating, "When I signed the Executive Order to create this council, it was with the clear goal of making life-changing gene and cell therapy treatments affordable and available to every Illinoisan."

Acting HFS Director Elizabeth M. Whitehorn emphasized that these recommendations aim to promote equitable healthcare access for all residents of Illinois. She said, "The state will continue to collaborate with other states, federal policymakers, and stakeholders to build on these recommendations."

The landscape of healthcare is evolving rapidly with new cell and gene therapies anticipated over the next decade. These therapies often target children and young adults who are largely covered by state Medicaid programs. However, their high costs can exceed one million dollars per patient.

Dr. James LaBelle from the University of Chicago highlighted the transformative potential of these therapies: "A new age in medicine is upon us... I hope that access to these therapies will be dictated only on biology and not by lack of accessibility or cost."

TaLana Hughes from the Sickle Cell Disease Association of Illinois noted that creating the Advisory Council was a positive step towards addressing challenges faced by those with rare diseases. She stated, "Many very thorough, healthy debate meetings led us to what we believe supports equitable access while contributing to a much larger national effort."

The report's recommendations focus on financing strategies for high-cost therapies such as ensuring they are classified as "covered outpatient drugs" for rebates, evaluating federal models for improved access benefits, and exploring discounting strategies.

Recommendations also include stratifying managed care customers early in diagnosis for specialized care coordination, developing performance metrics for managed care organizations (MCOs), and encouraging specialist availability in rural areas through incentives.

Additional considerations involve promoting provider-level access improvements through complex care coordination expansion and evaluating financial risk mitigation strategies like reinsurance.

Illinois has also submitted a letter of intent to participate in a new federal Cell and Gene Therapy (CGT) Access Model focusing initially on sickle cell disease. The CMS Innovation Center has completed negotiations with manufacturers regarding supplemental drug rebates linked to outcomes-based metrics.