Sickle Cell Treatment Act Expected to be Approved by House and Senate This Week

Largely due to the advocacy efforts of the ASH membership, the Sickle Cell Treatment Act has been included in the final package approved by the Senate-House Conference Committee on the “Jumpstart Our Business Strength (JOBS) Act” (S 1637/HR 4520). The final JOBS Act agreement still must be voted on by the House and Senate, but it is expected to be approved by the House as early as Thursday, and the Senate on Friday or Saturday of this week. President Bush is expected to sign the bill into law when it is approved by the House and Senate.

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 1.5 years, ASH has been aggressively advocating for this legislation.

For example, the Society’s Government Affairs Committee 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 emails 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. We will keep you informed about the status of the bill as it moves to final approval.

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