Baltimore, MD, July 25, 2014 --(PR.com
)-- Representatives Danny K. Davis (D-IL) and Michael C. Burgess (R-TX) revealed bipartisan legislation to renew the nation’s programs for research, surveillance, prevention and treatment of Sickle Cell Disease (SCD) for another four years.
Congressman Davis has worked with various stakeholders to develop a reauthorization bill for sickle cell programs. “The Sickle Cell Disease Association of America (SCDAA) applauds Representatives Davis and Burgess for their steadfast leadership in initiating federal action to sickle cell disease," said SCDAA President Sonja L. Banks. “Sickle cell disease is a major public health concern. Without reauthorization, funding for federal sickle cell programs will continue to significantly decrease. It is imperative that Congress supports and pass this legislation.”
There is an estimated 90,000 individuals in the U.S. who have SCD; another 3 million are trait carriers—it is estimated that 300 million people are SCD trait carriers worldwide. Of those afflicted by the disease, 65%-70% are classified as low income or economically disadvantaged. Congressmen Davis, Burgess and other champions, including members of the SCD Congressional Caucus, have garnered sincere admiration of the entire SCD community for their unwavering dedication to raising public awareness and taking action on this important issue.
The priority of the Sickle Cell Treatment Reauthorization, H.R. 5124, is to improve quality of life, treatment and prevention for those affected by sickle cell disease. Among numerous modified benefits, the bill aims to establish full funding for twenty-five (25) Sickle Cell Treatment Centers throughout the US and provide continued support of a National Evaluation Center to collect, coordinate, monitor and distribute data, as well as to define best practice standards; development of treatment protocols and educational materials. Likewise, the bill requires continued authorization for community-based organization (CBO) collaborative programs to improve medical and support services delivered to affected individuals, and expanded eligibility beyond Federally Qualified Health Centers (FQHC). Furthermore, the bill seeks authorization for the Centers for Disease Control (CDC) to be the funding agency for the continuance and establishment of the Hemoglobinopathies Surveillance System program and SCD public health promotion initiatives.
About Sickle Cell Disease Association of America
The Sickle Cell Disease Association of America, Inc. (SCDAA) serves as the nation’s only volunteer organization working full time on a national level to resolve issues surrounding sickle cell disease and trait. Since 1971 the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions. In addition, SCDAA has been and remains instrumental in promoting the search for a cure for all people in the world with sickle cell disease.
For more information or details on how you can support the passage of HR 5124 please call the SCDAA National headquarters at 410-528-1555 or visit the website at www.sicklecelldisease.org