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Funding for Sickle Cell Treatment Act
Now is the time to contact your Senators to support funding for the Sickle Cell Treatment Act Last year ASH successfully sought the passage of the Sickle Cell Treatment Act. This new law focuses on providing federal reimbursement for education and other services related to the prevention and treatment of SCD, including a grant program for 40 health centers nationwide. Grants can be used for the education, treatment (i.e., genetic counseling and testing), and continuity of care for individuals with SCD, for training health professionals, and to identify and secure additional federal funds to continue SCD treatment. We were grateful that the Congress provided $200,000 to establish a demonstration program and a national coordinating center to collect, monitor and distribute information on best practices. This year ASH had hoped to see at least $10 million in the Fiscal Year 2006 Labor, HHS and Education Appropriations bill for grants to create 40 treatment centers to provide medical treatment, education and other services for sickle cell disease patients. Unfortunately, the House Appropriations Committee did not provide any funding in its bill for the Sickle Cell Treatment Act. It is therefore critical that the Senate include funding in its L-HHS Appropriations bill. To do this, Senators must be contacted as soon as possible to support our funding request. Your effort will only take a minute, but with your help ASH will ensure that funding becomes a reality. ASH urges its members to e-mail the letter below to their Senators. The letter below can be sent as is, but we strongly encourage you to personalize the message. We also encourage you to forward this email to your colleagues that are interested in supporting high-quality sickle cell disease care. Please direct any questions to ASH Director of Government Relations & Practice Mila Becker at (202) 776-0544 or at mbecker@hematology.org
Dear [ Decision Maker ] , I write to urge your support of at least $10 million in FY 06 funding for grants to create 40 treatment centers that will provide medical treatment, education and other services for sickle cell disease patients pursuant to P.L 108-357. As a hematologist, I am interested in sickle cell disease, an inherited blood disorder that is a major health problem in the United States, primarily affecting African Americans. More than 2.5 million Americans, mostly African-Americans, have the sickle cell trait. Among newborn American infants, sickle cell disease occurs in approximately 1 in 300 African-Americans. The average life span for a patient with this devastating disease is 45 years. While we continue to make progress with treatments, patients suffer debilitating pain and dangerous problems such as blood clots and strokes. Funding for this grant program will improve the lives of sickle cell disease patients through disease management programs to help them live longer, healthier lives while funding research to find a comprehensive cure and providing community education about this disease and its treatment options. Although this appropriations request has bipartisan, bicameral support as well as the support of the Congressional Black Caucus and many other health, children's, church, union and African-American groups, the House L-HHS Appropriations bill did not include funding. Therefore, it is critical that it gains support from as many Senators as possible. I am counting on your support. I would be happy to answer any questions or provide you with more information about sickle cell disease. More information is also available through Faith Cristol 224-4862 (Sen. Talent) or Missy Rohrbach 224-3242 (Sen. Schumer).
Sincerely, |
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| Background Information |
Last year the Sickle Cell Treatment Act was signed into law (P.L. 108-357). The legislation provides federal matching funds for sickle cell disease (SCD) services. Right now, Medicaid covers physician and laboratory services for all states. This bill allows any state that spends money on new SCD prevention and treatment services specified in this bill to receive a federal match. In addition, the legislation provides federal reimbursement for education and other services related to the prevention and treatment of SCD. It would allow hospitals and clinics to do outreach with non-medical personnel and educate high-risk communities about recognizing and managing SCD. Moreover, the bill authorizes grant programs for 40 health centers nationwide. Grants can be used for the education, treatment (i.e., genetic counseling and testing), and continuity of care for individuals with SCD, for training health professionals, and to identify and secure additional federal funds to continue SCD treatment. The legislation also establishes a national coordinating center to collect, monitor and distribute information on best practices for the prevention and treatment of SCD and develop educational materials regarding the prevention and treatment of SCD. The Congress provided $200,000 last year to establish a demonstration program and a National Coordinating Center. This year, the original sponsors of the legislation hope to obtain at least $10 million in FY 06 funding. Although the legislation and appropriations request have bipartisan, bicameral support as well as the support of many health, children’s, church, union and African-American groups, the House L-HHS Appropriations bill did not include funding. Therefore, it is critical that as many Senators as possible indicate their support because this is an extremely tight year for the federal budget.
