107th Congress

Christopher Reeve Paralysis Act

S. 3000 and H.R. 5458

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 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.

This legislation would have focused attention on research related to paralysis resulting from a variety of neurological events, and would have encouraged cross-disciplinary and cross-institutional collaborations.

Provisions of the Legislation/Impact on NIH

The National Institutes of Health (NIH) does not require any additional authorities to conduct paralysis research. S. 3000 and H.R. 5458 were identical and contained the following provisions of interest to NIH:

• Title I of the legislation would have addressed research activities. Specifically, the legislation stated that the Director of 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 would have encouraged coordination to avoid duplication of effort. A report to Congress describing the paralysis activities and strategies for future research would have been required. The bills would also have provided that the Director of NIH could 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 consortia in paralysis research. NIH was to have designated each consortium funded by these awards as a Christopher Reeve Paralysis Research Consortium. The legislation prescribed how the consortia would have been organized, outlined the type of research focus, and urged that the research be coordinated. The legislation encouraged the Director of NIH to provide for a mechanism to educate and disseminate information to the public on the existing and planned NIH paralysis research and program activities.
• Title II of the legislation would have addressed rehabilitation research care activities. Under this title, the Director of NIH, acting through the Directors of NINDS and of the National Center for Medical Rehabilitation Research and in collaboration with the Centers for Disease Control and Prevention (CDC) and any other appropriate agencies, would have been encouraged to expand and coordinate research with implications for enhancing daily function for people with paralysis. Both bills provided that the Director could 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 that would have collaborated to design clinical rehabilitation intervention protocols and measures of outcomes on one or more forms of paralysis that resulted from central nervous system trauma, disorders, or stroke, or any combination of such conditions. The legislation prescribed how the multicenter clinical trial network would have been organized, outlined the type of research focus, and urged that the research be coordinated. The legislation would have required NIH to submit a report to Congress that provided a description of research activities with implications for enhancing daily function for persons with paralysis.
• The bills would have provided 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 encouraged the Secretary of Health and Human Services (HHS) to establish a working group to coordinate paralysis research, public health, and rehabilitation training at the Federal level. The working group was to be composed of NIH, CDC, the Health Resources and Services Administration, the Agency for Healthcare Research and Quality, the Centers for Medicare & Medicaid Services, the U.S. Department of Veterans Affairs, the U.S. Department of Education, the Rehabilitation Services Administration, the National Aeronautics and Space Administration, the National Institute on Standards and Technology (U.S. Department of Commerce), the U.S. Department of Defense, the U.S. Department of Labor, the National Institute on Disability and Rehabilitation Research, the Social Security Administration, and private entities that the Secretary of HHS deemed appropriate. The working groups were encouraged to prepare an annual report addressing the status of successful and emerging opportunities in Federal paralysis research, education and training, quality of life, and surveillance activities.

Status and Outlook

S. 3000 was introduced by Senator Tom Harkin (D-IA) on September 24, 2002, and was referred to the Senate Health, Education, Labor and Pensions Committee. H.R. 5458 was introduced by Representative Michael Bilirakis (R-FL) on September 25, and was referred to the House Energy and Commerce Committee. There was no further action on this legislation during the 107th Congress.