Sickle Cell Treatment Act Approved by House and Senate; ASH’s Advocacy Efforts Prove Successful

In one of their final acts before adjourning for the November 2 election, the House and Senate voted to approve the Sickle Cell Treatment Act as part of the “Jumpstart Our Business Strength (JOBS) Act” (S 1637/HR 4520). A key force behind the Sickle Cell Treatment Act was Senator Jim Talent (R-MO), who sponsored the bill and worked tirelessly to seek its approval. ASH’s advocacy efforts as well as the Society’s use of new e-advocacy tools played a significant role in the bill’s passage. President Bush is expected to sign the bill into law later this week.

Sickle Cell Treatment Act
The Sickle Cell Treatment Act provides federal matching funds for sickle cell disease under Medicaid, and allows states to receive a federal 50-50 match for non-medical expenses related to sickle cell disease treatment such as genetic counseling and testing. The legislation also provides a $10 million per year grant program to fund 40 health centers nationwide for the education, treatment, and continuity of care for individuals with sickle cell disease; allows hospitals and clinics to do outreach with non-medical personnel to educate high-risk communities about recognizing sickle cell; and creates a National Coordinating Center to collect, monitor, and distribute information on new and innovative practices to prevent and treat sickle cell disease.

ASH’s Successful Advocacy Efforts
ASH began its advocacy campaign on the Sickle Cell Treatment Act in April 2003 when the bill was introduced by Senators Jim Talent (R-MO), Charles Schumer (D-NY), and Lindsey Graham (R-SC), as well as Representatives Danny K. Davis (D-IL) and Richard Burr (R-NC). Over the past one and a half years, ASH has been aggressively advocating for this legislation.

For example, the Society’s Committee on Government Affairs has advocated for the bill during its two most recent Capitol Hill Days. In addition, through ASH’s new Advocacy Center, Grassroots Network members have sent e-mails to their Senators and Representatives on the Sickle Cell Treatment Act, initially about co-sponsoring the bill, and most recently about ensuring that the bill is retained in the final JOBS Act Conference package. Moreover, in late September, ASH worked with the Sickle Cell Disease Association of America to bring prominent sickle cell disease experts to Capitol Hill to meet with key members of the JOBS Act Conference Committee.

Thank You
The Society would like to sincerely thank the many ASH committee members and Grassroots Network volunteers who advocated for the Sickle Cell Treatment Act over the past 18 months. This legislation will make a big difference in the lives of people living with this devastating disease. Thanks for your commitment to sickle cell disease research and treatment.

If you have questions, or need more information, please contact ASH Government Affairs Manager Jeff Coughlin at (202) 776-0544 or jcoughlin@hematology.org.