108th Congress

Christopher Reeve Paralysis Act

S. 1010 and H.R. 1998

Background

In 1995, actor Christopher Reeve damaged his spinal cord in an equestrian competition. The spinal cord is about the same diameter as the thumb and is filled with gel like material much like that of the brain. Because the gel like filler makes the spinal cord very elastic, it would take a projectile, such as a bullet or knife, to separate or sever the cord. More often, the cord is traumatically damaged. Most spinal cord injuries result from a pinched, dented, or bruised cord, not an actual break. When a spinal cord is injured, the cells in the center of the cord die, and the cord becomes hollow, leaving a donut rim of tissue on the outside. Without enough cells, the spinal cord cannot function properly.

S. 1010 and H.R. 1998 are identical bills. The legislation focuses attention on research related to paralysis resulting from a variety of neurological events and encourages cross-disciplinary and cross-institutional collaborations.

Provisions of the Legislation/Impact on NIH

• Title I of the legislation addresses research activities. Specifically, the legislation states that the Director of the National Institutes of Health (NIH), acting through the Director of the National Institute of Neurological Disorders and Stroke (NINDS), may expand and coordinate the paralysis research activities of the Institutes. The legislation encourages this coordination to avoid duplication of effort. A report to Congress describing the paralysis activities and strategies for future research would be required. The bills would also allow the Director of NIH to make awards to public or nonprofit private entities to pay all or part of the costs of planning, establishing, improving, and providing basic operating support for consortia in paralysis research. NIH would designate each consortium funded by these awards as a Christopher Reeve Paralysis Research Consortium. The legislation prescribes how the consortia would be organized, outlines the type of research focus, and urges that the research be coordinated. The legislation encourages the Director of NIH to provide for a mechanism to educate and disseminate information to the public on existing and planned NIH paralysis research and program activities.
• Title II of the legislation addresses rehabilitation research care activities. The Director of NIH, acting through the Directors of the National Institute of Child Health and Human Development and of the National Center for Medical Rehabilitation Research and in collaboration with acronym title="National Institute of Neurological Disorders and Stroke">NINDS, the Centers for Disease Control and Prevention CDC), and any other appropriate agencies, is encouraged to expand and coordinate research with implications for enhancing daily function for people with paralysis. Both bills would allow the Director to make awards to public or nonprofit private entities to pay all or part of the costs 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 of 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. The legislation would require NIH to submit a report to Congress that provides a description of research activities with implications for enhancing daily function for persons with paralysis.
• Title III of the legislation provides for activities through the U.S. Department of Health and Human Services to improve the quality of life for persons with paralysis and other physical disabilities. The legislation encourages the Secretary of Health and Human Services (HHS), acting through the Director of CDC, to study the unique 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 persons with paralysis and other physical disabilities. The Secretary of HHS would be able to carry out such projects directly and through awards of grants or contracts.
• Through Title IV of the legislation, the Secretary of Veterans Affairs (VA), acting through the Director of the Office of Research and Development of the Veterans Health Administration and in collaboration with NIH and other agencies the Secretary deems appropriate, would be able to expand and coordinate activities with respect to research on paralysis. The Secretary of VA would be able to establish within the U.S. Department of Veterans Affairs centers for paralysis research, education, and clinical activities. The centers would be established at VA medical centers through the award of grants to VA medical centers that are affiliated with medical schools or other organizations that the Secretary deems appropriate. These grants could be used to pay all or part of the costs of planning, establishing, improving, and providing basic operating support for such centers. The research could focus on basic biomedical research on paralysis, rehabilitation research on paralysis, and health services and clinical trials for paralysis that results from central nervous system trauma or stroke; facilitate and enhance the dissemination of clinical and scientific findings; and replicate the findings of centers for scientific and translational purposes. The Secretary of VA could provide for the linkage and coordination of information among centers in order to create national consortia of centers and ensure regular communications between the centers. Each consortium would be able to conduct large-scale clinical trials for greater statistical significance; operate as part of an interdisciplinary rehabilitation team; focus on determining current standards of care and best practices; identify research gaps for specific populations; and identify future research needs.

Status and Outlook

S. 1010 was introduced on May 7, 2003, by Senator Tom Harkin (D-IA) and was referred to the Senate Committee on Health, Education, Labor and Pensions.

H.R. 1998 was introduced on May 7 by Representative Michael Bilirakis (R-FL) and was referred to the House Energy and Commerce Subcommittee on Health. No further action has occurred on this legislation.