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The Christopher Reeve Paralysis Act

Summary of Legislation

On May 7, 2003, the Christopher Reeve Paralysis Act (CRPA) was simultaneously introduced in the House of Representatives (H.R. 1998) and the Senate (S. 1010).  The CRPA has a strong bi-partisan co-sponsorship including Senators Tom Harkin (D-IA) and Arlen Specter (R-PA); and Representatives Michael Bilirakis (R-FL), Sherrod Brown (D-PA), Bill Young (R-FL), and Jim Langevin (D-RI).  Our sponsors have committed to bring the CRPA to the floor this legislative cycle.  You can help by joining the Christopher Reeve Action Network and encouraging your Members of Congress to co-sponsor H.R. 1998 and S. 1010.  Click here to join the Christopher Reeve Action Network.

Title I  Paralysis Research: Authorizes funding to expand research on paralysis at the National Institutes of Health, acting through the Director of National Institutes of Neurological Disorders and Stroke (NINDS).  Title includes:

  • Establishing Christopher Reeve Paralysis Research Consortia to advance the science of paralysis from central nervous system trauma and stroke; and 
  • Enhancing efforts to translate and disseminate clinical and scientific findings on paralysis.

Title II Paralysis Rehabilitation and Care: Authorizes the expansion and coordination of activities at the National Institutes of Health, acting through the National Center for Medical Rehabilitation Research (NCMRR).  Title calls for research to enhance daily function for people with paralysis, including:

  • Establishing a Paralysis Clinical Trials Network to design clinical rehabilitation intervention protocols and measures of outcomes on one or more forms of paralysis that result form central nervous system trauma, disorder and stroke with the goal of improving functional mobility, preventing secondary complications and developing improved assistive technology; and 
  • Enhancing translation and dissemination of clinical and scientific findings on paralysis.

Title III Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities: Authorizes the Secretary of Health and Human Services, acting through the Centers for Disease Control and Prevention, to implement projects and interventions to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities, including:

  • Developing a National Paralysis and Physical Disability Action Plan in partnership with voluntary health and disability organizations; 
  • Developing comprehensive and innovative programs, services and demonstrations within existing State-based disability and health programs of the CDC, which are designed to support and advance quality of life for persons with paralysis and other physical disabilities; 
  • Establishing a paralysis registry to support surveillance for research, education and quality of life purposes; and 
  • Providing grants to non-profit private health and disability organizations to coordinate existing state services with State-based paralysis and physical disability programs; disseminate information to the public; improve access to services and test model intervention programs to improve quality of life.

Title IV Basic Rehabilitation and Health Sciences Research: Authorizes the expansion and coordination of activities of the Department of Veterans Affairs, acting through the Veterans Health Administration (VHA), with respect to research on paralysis.  Title includes:

  • Establishing Paralysis Research, Education and Clinical Care Centers (RECCs) and Consortia to focus on basic biomedical research on paralysis; rehabilitation research on paralysis; health services and clinical trials for paralysis that result from central nervous system, trauma or stroke; dissemination of clinical and scientific findings; and replication of the findings of centers for scientific and translational purposes.  The formation of centers into consortia provide for the linkage and coordination of information among centers to ensure regular communication between members; and 
  • Establishing Quality Enhancement Research Initiatives (QERIs) for paralysis, which translates clinical findings and recommendations into practices within the VHA; identifying best practices; defining existing practice patterns and outcome measurements; improving patient outcomes associated with improved health-related quality of life; and evaluating a quality enhancement intervention program for the translation of clinical research findings into routine clinical practice.
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New Jersey Governor Puts Stem Cell Research in Budget Plan
By LAURA MANSNERUS
Published: February 21, 2004, NY TIMES


TRENTON, Feb. 20 - James E. McGreevey will use his budget message next Tuesday to announce a plan to make New Jersey the first state to finance research on human embryonic stem cells, officials in the governor's office said Friday.

In most states, official efforts have focused on how to limit such research, which opponents view as unethical, and President Bush has cut off federal financing for most projects.

But Mr. McGreevey is setting a different course. Last month, he signed largely symbolic legislation authorizing stem cell research, making New Jersey the second state, after California, to support it explicitly. The budget would take the next step: providing $6.5 million for a research institute, to be run by Rutgers University and the University of Medicine and Dentistry of New Jersey.

Mr. McGreevey's plan calls for $50 million over five years, including both state and private funds, for the institute, which would be built in New Brunswick.

Dr. Wise Young, chairman of cell biology and neuroscience at Rutgers and an author of the governor's plan, said he and other researchers hoped to recruit about a dozen of "the best stem cell scientists in the world," which he estimated would require about $25 million. "Everybody understands that because of current federal restrictions on stem cell funding, if you don't put money behind it, it's not going to change very much," Dr. Young said.

But, as the recent development of human embryos from cloned cells by South Korean scientists has shown, religious and ethical concerns surround stem cell research. Opponents say the research is unethical because it starts with the destruction of a human embryo.

Because of such concerns, President Bush in 2001 ordered the National Institutes of Health not to provide any funds for research on human embryonic cells except those colonies, or "lines," already cultivated at research centers.

Researchers and advisers to the governor said Friday that they knew of no state other than New Jersey that directly supports stem cell research. But California has a lead in research talent and private funds, having attracted both when it enacted its stem cell research legislation in 2002.

Several states are scrambling to become centers for biotechnology companies and university researchers in stem cell research. Many expect that it will eventually transform medicine.

In California, a ballot initiative now under way would raise $3 billion over 10 years for stem cell research.

Stem cells are found in human embryos, umbilical cords and placentas. The stem cells harvested from human embryos can be induced to grow into any kind of tissue in the body, and researchers believe that by studying them, they can learn how to create stem cells from any kind of cells. The goal is generating cells to be used in treating degenerative diseases and brain and spinal cord injuries.

The New Jersey Assembly waged a furious debate over the stem cell research legislation, which did not authorize any practices that were not already legal but assured researchers that the state would not interfere. The measure was approved more easily in the Senate. In California, Stanford University received a $12 million gift to establish a stem cell research center, as have several other private universities, including Columbia University.

But Dr. Ira Black, who worked on the proposal for Mr. McGreevey, said, "This, I do believe, will vault New Jersey into a world leadership position." Dr. Black, a stem cell researcher at the Robert Wood Johnson Medical School in New Brunswick, added that the research "should touch every disease I can think of," including Alzheimer's, diabetes, stroke and heart disease.

Paul J. Byrne, the chairman of New Jersey Right to Hope, an organization of patient advocacy groups, said that "everything is exploding around the world" in stem cell research and that Mr. McGreevey was the only governor in the position of bringing it to the United States.

The research institute will constitute an item in the governor's budget for the fiscal year beginning July 1. While it does not require a separate legislative appropriation, the plan is expected to renew the debate that flared last fall over the research bill.

"You need the legislature's support no matter what," Dr. Young said. "Whether you can slip it in or not is not the issue. This is too high-profile to slip it in."


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