American Society of Hematology

Now is the time to contact your Senators and Representatives in support of 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 sickle cell disease (SCD), including a grant program for 40 health centers nationwide.  We were grateful that Congress provided $200,000 in FY 2005 to establish a demonstration program and a national coordinating center to collect, monitor and distribute information on best practices.

On November 17, the House of Representatives rejected the fiscal year (FY) 2006 Departments of Labor, Health and Human Services (HHS), and Education (Labor-HHS) appropriations bill (HR 3010) by a 209-222 vote. 

With this legislation defeated, the next step in the process will be to reconvene the Labor-HHS House-Senate Conference Committee and develop a bill that is acceptable to both chambers of Congress.  Sickle Cell Disease advocates now have additional opportunity to contact their Senators and Representatives to strengthen support for FY 2006 funding of the Sickle Cell Treatment Act. 

It is critical that you contact your Senators and Representatives as the FY 2006 funding bill is discussed in the House-Senate Conference Committee.  You should strongly urge your Senators and Representatives to support the Senate number of $2 million for the Sickle Cell Treatment Act in FY 2006, since the House eliminated funding for this program in its FY 2006 bill. 

Your effort will only take a minute, but will help ASH's campaign to make this funding a reality.

ASH urges its members to e-mail the letter below to their Senators and Representatives. 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 Government Affairs Manager Jeff Coughlin at (202) 776-0544 or jcoughlin@hematology.org. 

Dear [ Decision Maker ] ,

I write to urge your support of at least $2 million in FY 2006 funding (the same level approved by the Senate on October 27) for grants to create 40 treatment centers that will provide medical treatment, education, and other services for sickle cell disease patients pursuant to PL 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.

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. Please support an FY 2006 appropriation of at least $2 million for PL 108-357.

Thank you for your interest in this issue and I appreciate your support. I would be happy to answer any questions or provide you with more information about sickle cell disease.

Sincerely,

Campaign Launched:
July 01, 2005