Congressional Caucus Formed to Benefit Sickle Cell Disease
Sickle Cell Disease Association of America announces Congressional Caucus for Sickle Cell Disease
February 3, 2014 Baltimore, MD -- The Sickle Cell Disease Association of America (SCDAA) announces the formation of the Sickle Cell Disease (SCD) Congressional Caucus. This legislative milestone is designed to focus on increasing support for the largely under-funded disease. Led by Representatives, Charles Rangel (D-NY), Danny Davis (D-IL), and Senator Tim Scott (R-SC), the Caucus will work toward bringing public and congressional awareness to the unique needs of the Sickle Cell Disease community – patients, physicians, scientists and industry, and to develop opportunities to address barriers in access to and development of crucial treatments. The 2014 year has started out strong for the SCD community, with several announcements regarding research and treatment advances across the country.
SCD is an inherited blood disorder that affects red blood cells. People with SCD have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. When sickle-shaped cells block small blood vessels, less blood can each that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of SCD. Presently SCD receives a significantly disproportionate amount of funding for research and treatment compared to many other comparable diseases, there is only one (1) FDA approved medication for treatment and there is no universal cure. The Caucus will give a lasting voice to the SCD community on Capitol Hill and will help create resolutions that turn hope into treatments and better quality of life for those affected.
“SCDAA is extremely proud to have worked on accomplishing this effort with Congressman Charles Rangel,” says Sonja Banks, President and COO of SCDAA. “Given the many challenges we face as a community in insuring quality treatment, healthcare and services; a Sickle Cell Disease Caucus is exactly what we need to bring about positive change for those suffering and affected by this devastating disease. We are extremely excited about the work that will be done and would like to thank caucus Co-Chairs Representatives Rangel, Davis and Scott for helping to bring national awareness and attention to the sickle cell cause”.
If you feel that your member of Congress should take up the SCD cause, support laws that accelerate treatments and a cure for sickle cell disease, and expand funding for research, encourage him or her to join the Sickle Cell Disease Caucus today!
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. Visit www.sicklecelldisease.org for more information.