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FOR IMMEDIATE RELEASE: February 26, 2004

NAACP Endorses Schumer's Sickle Cell Disease Legislation

American Medical Association also backs bipartisan bill that would increase Sickle Cell treatment services not currently covered by Medicaid and give states matching funds for genetic counseling and education

A broad coalition of groups including the National Association for the Advancement of Colored People (NAACP), the American Medical Association (AMA), the National Medical Association (NMA) and the Sickle Cell Disease Association of America (SCDAA) today endorsed US Senator Charles E. Schumer's Sickle Cell Treatment Act, which would help treat and expand services for Americans with Sickle Cell Disease.

At a press conference in Washington, DC, elementary school children presented artwork to Senator Schumer and the Republican co-sponsor of this bill, US Senator Jim Talent of Missouri, as a part of an effort to raise awareness of Sickle Cell Disease. Congressmen Danny Davis (D-Illinois) and Richard Burr (R-North Carolina), who have introduced companion legislation in the House, joined the senators in announcing these endorsements.

"Sadly, we know all too well what the impact of Sickle Cell Disease is in New York," Schumer said. "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. And the rate of Sickle Cell Disease among infants born at Harlem Hospital has roughly doubled since 1998. We need to do something to stem this increase and we need to do it now. That's why I am so grateful we have the support of organizations including the NAACP, the American Medical Association and the Children's Defense Fund for this bill."

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.

Every year, more than 1,800 American babies are born with Sickle Cell Disease. The most feared complication for children with the disease is a stroke, which many infants as young as 18 months of age experience. Some patients remain without symptoms for years, while others may not survive infancy or early childhood.

Adults with Sickle Cell Disease experience severe physical problems, such as acute lung complications, and can develop chronic problems such as pulmonary disease, pulmonary hypertension and kidney failure. The average life span for an adult with Sickle Cell is 45 years.

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. This makes it easier for doctors to treat patients with Sickle Cell Disease and increases the availability of physician and laboratory services for states.

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 funding and research conducted by health professionals and universities to educate patients and help find a cure for Sickle Cell Disease.

The bipartisan, bicameral "Sickle Cell Treatment Act" (S. 874/H.R. 1736) currently has 41 Senate and 39 House co-sponsors as well as the support of the Congressional Black Caucus (CBC) and many other children's and African-American groups. This legislation will help treat Sickle Cell Disease patients and fund research toward finding a cure. "This bill will provide a major boost for the health care of thousands of people. That's why it's getting such bipartisan support and is being backed by so many groups," said Schumer. "Congress needs to act on this now to improve our efforts to help the thousands of Americans suffering from the disease."



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