Senate Passes Sickle Cell Disease Legislation

The U.S. Senate has passed Sen. Jim Talent's (R-MO) Sickle Cell Treatment Act of 2003 (S. 874) to help treat and expand services for patients with the blood disorder that primarily affects African-Americans. Sen. Talent's legislation passed as part of an amendment to the JOBS Act, FSC/ETI (S. 1637), which was approved by the Senate on May 11.

For the last year, ASH has worked with Sen. Talent to obtain support for this legislation. Efforts by the ASH Grassroots Network led to additional co-sponsors in both the Senate and House of Representatives. Sen. Talent's bipartisan, bicameral Sickle Cell Treatment Act (S. 874/H.R. 1736) had 49 Senate and 49 House co-sponsors.

Sickle cell disease affects about one in 300 African-American newborns. It is an inherited defect in blood that causes normally round blood cells to take on a sickle shape. These sickle-shaped cells clog the bloodstream, creating obstructions that result in severe medical complications. The disease affects approximately 70,000 Americans; more than 2,500,000 Americans, mostly African-Americans, have the sickle cell trait.

The Sickle Cell Treatment Act would increase health care access for patients by providing federal matching funds for sickle cell disease-related services under Medicaid, making it easier for doctors to treat patients with the disease and increasing state funding for physician and laboratory services.

The legislation also enhances the number of services available to sickle cell disease patients by allowing states to receive a federal 50-50 funding match for treatment expenses such as genetic counseling, community outreach, and education.

Additionally, the bill creates 40 sickle cell disease treatment centers across the country and establishes a National Sickle Cell Disease Research Headquarters through the U.S. Department of Health and Human Services. This national coordinating center will coordinate the research conducted by health professionals and universities to help educate patients with the goal of finding a comprehensive cure for sickle cell disease.

The FSC/ETI bill with Sen. Talent's legislation now goes to a conference committee, where members will work out differences with the House legislation.