Sen. Lesser Leads Passage of Legislation to Expand Coverage for Sickle Cell Disease

Today, State Senator Matt Lesser, Senate Chair of the Human Services Committee, passed legislation that would require Medicaid coverage of FDA-approved gene therapies to treat sickle cell disease.

This legislation requires the Commissioner of the Department of Social Services to give Medicaid coverage for federal Food and Drug Administration approved gene therapies to treat sickle cell disease. It also requires the commissioner to apply for any federal initiative, including the Centers for Medicare and Medicaid Services’ cell and gene therapy access model, to increase cost-effective access to these therapies.

“Sickle cell disease is a debilitating disease that affects hundreds in our state, and for a very long time treatment options were limited,” said Sen. Lesser. “Today, cures are available and they provide real relief for patients. Unfortunately, the cost is unattainable for many and our most vulnerable are left without treatment options. This legislation is one step closer to providing comprehensive, quality healthcare to everyone, not just those who can afford the astronomical cost. This is an important step forward for health equity. I am grateful for the unanimous support of my Senate colleagues.”

Sickle cell disease is a group of inherited disorders that affect hemoglobin, the major protein that carries oxygen in red blood cells. It affects blood flow and causes anemia, chronic wounds that will not heal, frequent infections, episodes of extreme pain among other complications.

In recent years, technology has allowed for curative treatments, including cell and gene therapy, but cost remains a barrier for many. In December 2023, the FDA approved two gene therapies for the treatment of sickle cell disease, Casgevy which costs over $2 million per treatment, and Lyfgenia which costs over $3 million per treatment.

Sickle cell disease is a life-long disorder that causes a series of complications, and the Biden administration’s Centers for Medicare & Medicaid Services determined that complications from sickle cell disease cost the health system almost $3 billion annually. Sickle cell disease disproportionately impacts Black and Hispanic Americans. In the United States, more than 100,000 people live with sickle cell disease, and between 50-60% of those affected are enrolled in Medicaid.