110th Congress

Christopher and Dana Reeve Paralysis Act

H.R. 446, H.R. 1727, and S. 1183

Background

In 1995, actor Christopher Reeve permanently damaged his spinal cord when he fell from a horse during a steeplechase race. Having broken several key bones in his neck, Reeve was left completely paralyzed and could not even breathe without assistance. The doctors’ prognosis for his recovery remained grim, but Reeve maintained hope that advances in medical science would someday allow him to walk again. In 1996, he helped establish the UCIrvine Reeve-Irvine Research Center, which specializes in spinal cord injuries. As a result, he became the chief spokesperson and an outspoken advocate for stem cell and spinal cord injury research aimed at finding a means to restore function to those with such injuries. In 1999, he became the Chairman of the Board of the Christopher Reeve Paralysis Foundation (CRPF). CRPF, a national, nonprofit organization, 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 for grants that improve the quality of life for people with disabilities. On October 10, 2004, Reeve died of heart failure at the age of 52. A year and a half later, his wife, Dana, died of lung cancer.

The Christopher Reeve Paralysis Act was introduced in the 107th, 108th, and 109th Congresses by Senator Tom Harkin (D-IA). In the House, the companion bill was sponsored by Representative Michael Bilirakis (R-FL) in each of the three Congresses. No further action was taken on these bills, except that at the conclusion of the 108th Congress, the Research Review Act of 2004 (P.L. 108-427) was passed. It combined some elements of two preexisting bills, one of which was the Christopher Reeve Paralysis Act. While the full Christopher Reeve Paralysis Act as introduced in the 108th Congress was not included in P.L. 108-427, 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 foster collaboration on clinical trials on topics including spinal cord injury and paralysis research.

Provisions of the Legislation/Impact on NIH

S. 1183, the Christopher and Dana Reeve Paralysis Act, would authorize the Director of NIH to expand and coordinate paralysis research through NIH Institutes and Centers, including consortia (each of which would be designated as a Christopher and Dana Reeve Paralysis Research Consortium) focused on basic, translational, or clinical research and multicenter networks of clinical sites focused on designing clinical rehabilitation protocols for one or more forms of paralysis. Such paralysis research would include paralysis from central nervous system trauma, disorders, or stroke or any combination of such conditions. Title III of the bill would authorize $25 million for activities of the Secretary of Health and Human Services (HHS), acting through the Centers for Disease Control and Prevention (CDC).

Specifically, S. 1183 would amend the Public Health Service Act to do the following:

• would authorize the Director of NIH: 1) acting through the Director of the National Institute of Neurological Disorders and Stroke, to expand and coordinate NIH activities on paralysis research, 2) to award grants to plan, establish, improve, and provide basic operating support for Christopher and Dana Reeve Paralysis Research Consortia, and 3) to educate, disseminate information, and receive public comment on NIH programs and research regarding paralysis.
• would authorize the Director of NIH, acting through the Director of the National Institute of Child Health and Human Development and the National Center for Medical Rehabilitation Research, to expand and coordinate NIH research with implications for enhancing daily function for individuals with paralysis and to make grants to plan, establish, improve, and provide basic operating support for multicenter clinical trial networks to design clinical rehabilitation intervention protocols and measures of outcomes on paralysis.
• would authorize the Secretary of HHS, acting through the Director of CDC, to study the health challenges associated with paralysis and other physical disabilities and carry out projects and interventions to improve the quality of life and long-term health status of individuals with such conditions. It would also authorize the Secretary to award grants for activities related to paralysis, including grants to establish paralysis registries and disseminate information to the public.

H.R. 1727 is virtually identical to the reported S. 1183. H.R. 446 differs only in that it has an additional title for the U.S. Department of Veterans Affairs.

Status and Outlook

H.R. 446 was introduced by Representative Gus Bilirakis (R-FL) on January 12, 2007. Representative Gus Bilirakis is the son of former Representative Michael Bilirakis, a long-time sponsor of this legislation. No further action has occurred on this legislation.

H.R. 1727 was introduced by Representative Tammy Baldwin (D-WI) on March 28, 2007. No further action has occurred on this legislation.

S. 1183 was introduced by Senator Harkin on April 23, 2007. On July 25, the Senate Committee on Health, Education, Labor and Pensions reported out S. 1183 by a voice vote with an amendment in the nature of a substitute. No further action has occurred on this legislation.