Sickle Cell Treatment Act Under Consideration by House-Senate Conference Committee

A proposal to help fund treatment for and prevention of sickle cell disease has beaten the odds by making it into an unrelated international tax bill as an amendment and is now under consideration by a House-Senate Conference Committee.

When The Hematologist went to press, Congress was convening a House-Senate Conference Committee to resolve the differences between the House and Senate versions of the "Jumpstart Our Business Strength" (JOBS) Act (S 1637). While the Senate version of the bill includes the Sickle Cell Treatment Act, the House version does not include any such language. Since the Sickle Cell Treatment Act was included in only part of the bill under debate, there is a real possibility that the sickle cell amendment may not be retained in the final JOBS Act conference package.

The Sickle Cell Treatment Act (S 874/HR 1736) 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, this 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 would create grant programs for 40 health centers nationwide. Grants could 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 bill has had bipartisan support on Capitol Hill. As of August 27, 2004, there were 53 House and 49 Senate co-sponsors of the legislation. ASH is mounting a major grassroots advocacy effort to help ensure that the Sickle Cell Treatment Act is approved by Congress and signed into law this year. Further information is available on the ASH Web site, including information about contacting Senators and Representatives in support of the Sickle Cell Treatment Act.

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