FY 2006 HHS Funding Bill Includes $2.2 Million to Fund Sickle Cell Treatment Law

January 5, 2006—The final fiscal year (FY) 2006 Labor, Health and Human Services (HHS), and Education (Labor-HHS) Appropriations Conference Report (PL 109-149) that was signed into law on December 30, 2005, includes $2.2 million to fund the grant program in the Sickle Cell Disease Treatment Law (PL 108-357). Sickle cell disease (SCD) champion Senator James Talent (R-MO) worked with Senate Appropriations Committee Chair Thad Cochran (R-MS) to ensure that funding for SCD was included in the final version of the bill.

“The first step was enacting a comprehensive bill to help patients with sickle cell disease, now we are focused on funding the centers of excellence that we approved in the legislation,” said Senator Talent. “I can’t emphasize enough how much this funding means to the community of people affected by sickle cell disease—not just the 70,000 Americans that have it, not just the 2.5 million Americans who have the trait, but their families and friends who struggle every day with this disease. I’ve had the opportunity to meet with many of these patients and their families. I’ve been inspired by their stories as well as their optimism that we will one day find a cure.”

The Sickle Cell Treatment grants will be administered by the Health Resources and Services Administration in HHS which will award the funding to Centers of Excellence around the country that specialize in SCD treatment and research. The funding will 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.

In FY 2005, Congress provided nearly $200,000 for PL 108-357 to establish a demonstration program and a national coordinating center to collect, monitor, and distribute information on best practices. This year, the Senate initially approved $2 million to continue the implementation of the Sickle Cell Treatment Law, while the House eliminated funding for this program in its FY 2006 bill.

The Sickle Cell Treatment Act was signed into law by President Bush on October 22, 2004. In addition to the Centers of Excellence grant program, it authorizes federal matching funds for SCD services. Before the law was enacted, Medicaid covered physician and laboratory services for all states—the new law allowed any state that spends money on new SCD education, prevention, and treatment services specified in this bill to receive a federal match. In addition, the law would allow hospitals and clinics to do outreach with non-medical personnel and educate high-risk communities about recognizing and managing SCD.

Securing FY 2006 funding for the Sickle Cell Treatment Law was a priority for ASH and a real victory for the Society. ASH has been integrally involved in advocating for this bill since it was introduced in April 2003 by Senators Talent, Charles Schumer (D-NY), and Lindsey Graham (R-SC), as well as Representatives Danny K. Davis (D-IL) and Richard Burr (R-NC). Since it was signed into law, the Society has been aggressively advocating in Congress for funding of this legislation. In 2005, ASH worked closely with our partners in the SCD community to generate hundreds of e-mails to Congress from physicians, caregivers, patients, and families affected by sickle cell disease advocating for FY 2006 funding.

If you have questions, or need more information, please contact the ASH Government Relations and Practice Department at 202-776-0544 or grassroots@hematology.org.