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FOR IMMEDIATE RELEASE: October 7, 2004

SCHUMER-TALENT SICKLE CELL DISEASE BILL PASSES SENATE-HOUSE CONFERENCE

The US House-Senate Conference Committee today passed US Senators Chuck Schumer’s and Jim Talent's Sickle Cell Treatment Act (S. 874) to help treat and expand services for patients with the blood disorder that primarily affects African-Americans. The legislation passed as part of an amendment to the JOBS Act, FSC/ETI (S. 1637), which was originally approved by the Senate on May 11, 2004. The FSC/ETI Conference Report with Senator Talent and Schumer’s legislation must now be approved by the House and Senate before being signed into law by the President.

"While we have known about the dangers of Sickle Cell Disease among African Americans for a long time, new immigration trends in New York - including new immigrants from West Africa -- appear to be driving a sharp increase in Sickle Cell Disease in Harlem and other communities in New York," said Sen. Schumer. "That why we need to act now to treat and expand services for Sickle Cell Disease - and this bipartisan plan is an important step in that direction."

“This is great news for the tens of thousands of Americans with Sickle Cell Disease,” said Sen. Talent. "This is comprehensive health care legislation that will increase funding for treatment and research efforts, expand awareness about the disease and provide additional services for sickle cell disease patients.”

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 is the most significant piece of health care legislation for this community in 35 years,” said Dr. Michael DeBaun, a pediatric hematologist with Washington University School of Medicine, St. Louis Children's Hospital.

The Sickle Cell Treatment Act will 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 US 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.

Senator Schumer’s bipartisan, bicameral Sickle Cell Treatment Act (S. 874/H.R. 1736) has the support of the American Medical Association, the Congressional Black Caucus (CBC), the NAACP, the Sickle Cell Disease Association of America and many other groups.

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