House Approves Talent-Schumer-Davis-Burr Sickle Cell Disease Bill

FOR IMMEDIATE RELEASE

CONTACT:
Erin Hamm
(202) 224-6154

Blake Zeff, Schumer (202) 224- 7433
Ira Cohen, Davis (773) 533-7520
Robert Godfrey, Burr (202) 225-2071

HOUSE APPROVES TALENT-SCHUMER-DAVIS-BURR SICKLE CELL DISEASE BILL

(WASHINGTON, D.C.) The U.S. House of Representatives today passed U.S. Senators Jim Talent (R-Mo.) and Chuck Schumer’s (D-N.Y.), and Congressmen Danny K. Davis (D-Ill.) and Richard Burr’s (R-N.C.) Sickle Cell Treatment Act (S. 874/H.R. 1736) to help treat and expand services for patients with the blood disorder that primarily affects African-Americans. The FSC/ETI Conference Report, which included Senators Talent and Schumer and Congressmen Davis and Burr’s legislation, passed the House 280-141. The Conference Report must now be approved by the Senate before being signed into law by the President.
“ 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.”
“ 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 first step in that direction.”
“ This bi-partisan legislation is greatly needed because more than two million Americans, mostly of African descent, have the Sickle Cell trait and more than 70,000 have Sickle Cell Disease,” said Congressman Davis. “Every year 130 additional Illinois children are diagnosed with SCD. New research and new treatments are beginning to offer new hope to those with Sickle Cell Disease. This legislation will advance research, education and treatment and will help save lives and minimize the pain that people with Sickle Cell Disease have to live with.”
“ This important legislation expands health care access to thousands of people suffering from a cruel and debilitating disease,” said Congressman Burr. “The bipartisan nature of the Sickle Cell Disease treatment legislation attests to Congress’ commitment to make sure that Sickle Cell Disease patients are diagnosed, cared for, and have access to effective treatment.”
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. I'm grateful for Senator Talent’s unyielding support and for working hard to include it in the FSC/ETI Conference Report,” said Dr. Michael DeBaun, a pediatric hematologist with Washington University School of Medicine, St. Louis Children’s Hospital. “Passage of Talent’s bill will offer hope to millions of children and their parents who deal with this disease everyday,” DeBaun said.
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.
“ I want to thank Senator Talent for working to include his sickle cell legislation in the Conference Report. This bill will help my son and our family live stronger lives and bring us closer to finding a cure. My 10-year-old son Isaac has sickle cell disease, which affects our family’s decisions everyday,” said Everline Singleton, mother of 10-year old Isaac Singleton, who suffers from Sickle Cell Disease. “Senator Talent’s bill will help families like ours have the access to education and treatment that we need to stay healthy,” said Mrs. Singleton.
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.
Senators Talent and Schumer, and Congressmen Davis and Burr’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 National Medical Association, the Sickle Cell Disease Association of America and many other groups.