Public Laws | Pending Legislation
Christopher Reeve Paralysis Act
S. 828, H.R. 1554
In 1995, actor Christopher Reeve damaged his spinal cord in an equestrian competition. As a result, and until his death on October 10, 2004, he was the chief spokesperson and advocate for spinal cord research aimed at finding a means to restore function to those with such injuries. In 1999, he became the Chair of the Board of the Christopher Reeve Paralysis Foundation (CRPF), a national nonprofit organization that supports research to develop effective treatments and a cure for paralysis caused by spinal cord injury and other central nervous system disorders. CRPF also allocates a portion of its resources to grants that improve the quality of life for people with disabilities.
The Christopher Reeve Paralysis Act was introduced in both the 107th and 108th Congresses by Senator Tom Harkin (D-IA), first on September 24, 2002, and again on May 7, 2003. Its companion bill was sponsored by Representative Michael Bilirakis (R-FL) in each of the two Congresses. No further action occurred on this legislation. At the conclusion the 108th Congress, however, H.R. 5213, the Research Review Act of 2004, was introduced by Representatives Bilirakis and Sherrod Brown (D-OH). This bill combined some elements of two preexisting bills, one of which was the Christopher Reeve Paralysis Act. It passed the House on October 7, 2004, and unanimously passed the Senate on November 16. President Bush signed the measure on November 30 as P.L. 108-427. While the full Christopher Reeve Paralysis Act as introduced in the 108th Congress was not included, the Act did direct the U.S. Department of Health and Human Services, in coordination with the National Institutes of Health (NIH), to outline the methods by which the use of multidisciplinary research teams and consortia could advance treatments, develop new therapies, and collaborate on clinical trials, including spinal cord injury and paralysis research.
Provisions of the Legislation/Impact on NIH
S. 828 and H.R. 1554, as introduced, are identical and contain the following provisions relevant to NIH:
- Title I of the legislation addresses paralysis research activities. Specifically, the legislation would authorize the Director of NIH, acting through the Director of the National Institute of Neurological Disorders and Stroke (NINDS), to coordinate the paralysis research activities of the Institutes, taking into account the methods outlined in the report required under the Research Review Act with respect to spinal cord injury and paralysis research (relating to the NIH Roadmap for medical research). IH would be required to prepare and submit a report to Congress that describes the current paralysis activities of the Institutes and provides strategies for future activities. NIH would be authorized to establish consortia in paralysis research, with each consortium funded to be designated as a Christopher Reeve Paralysis Research Consortium. Title I would authorize $25,000,000 for fiscal years (FY) 2006 through 2009.
- Title II of the legislation addresses rehabilitation research care activities. It would authorize NIH to expand its activities through the National Institute of Child Health and Human Development and National Center for Medical Rehabilitation Research and in collaboration with NINDS and the Centers for Disease Control and Prevention (CDC). NIH would also be authorized to make awards to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for multicenter networks of clinical sites. These sites would collaborate to design clinical rehabilitation intervention protocols and measures of outcomes on one or more forms of paralysis that result from central nervous system trauma, disorders, or stroke, or any combination of such conditions. The legislation prescribes how the multicenter clinical trial network would be organized, outlines the type of research focus, and urges that the research be coordinated. NIH would be required to submit a report to Congress that provides a description of research activities with implications for enhancing daily function for persons with paralysis. Title II would authorize $25,000,000 for FYs 2006 through 2009.
- The other titles of the bills provide for activities coordinated through CDC and State-based programs. The U.S. Department of Veterans Affairs would also be authorized to expand and coordinate its activities in collaboration with NIH and other appropriate agencies. Reports on these activities would also be required.
Status and Outlook
S. 828 was introduced by Senator Harkin on April 18, 2005, and was referred to the Senate Health, Education, Labor and Pensions Committee. Its companion measure, H.R. 1554, was introduced by Representative Bilirakis on April 12, 2005, and was referred to the House Committees on Energy and Commerce and on Veterans' Affairs. No further action has occurred on this legislation.