Senate Passes Legislation to Expand Coverage for Sickle Cell Disease

Today, State Senator Saud Anwar (D-South Windsor) voted with the Senate to pass 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.

“The impacts of rare conditions like sickle cell disease can be crippling for individuals even before considering their financial cost,” said Sen. Anwar, “and the dollar total for life-changing and life-saving treatments can skyrocket. Patients should be able to access vital treatments and this bill makes them more attainable. This legislation has the potential to save lives and voting in support is an honor.”

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.

FOR IMMEDIATE RELEASE
Contact: Joe O’Leary | Joe.OLeary@cga.ct.gov | 508-479-4969