[Congressional Record Volume 149, Number 67 (Wednesday, May 7, 2003)]
[Senate]
[Pages S5861-S5862]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

  By Mr. HARKIN (for himself, Mr. Specter, and Mr. Kennedy):
  S. 1010. A bill to enhance and further research into paralysis and to 
improve rehabilitation and the quality of life for persons living with 
paralysis and other physical disabilities; to the Committee on Health, 
Education, Labor, and Pensions.
  Mr. HARKIN. Mr. President, I am pleased to be joined by Senators 
Specter and Kennedy today in re-introducing legislation that will give 
new hope to Americans with paralysis.
  Recent news reports about the medical miracle Christopher Reeve has 
experienced over the two past years is an inspiration for every 
American living with paralysis as a result of a spinal cord injury. 
When it was announced that, for the first time since his accident in 
1995, Chris regained sensation and movement in parts of his body, 
providing inspiration for some of the two million Americans with 
paralysis. Most recently, Chris has started weaning himself from a 
ventilator, breathing on his own for the first time since his accident.
  Today, through the Christopher Reeve Paralysis Act of 2003, we seek 
to achieve two primary goals. First, to further advance the science 
needed to promote spinal regeneration. And second, to build quality of 
life programs throughout the country that will further advance full 
participation, independent living, self-sufficiency and equality of 
opportunity for individuals with paralysis and other physical 
disabilities.
  Chris' recovery and recent scientific evidence show that progress is 
possible. At research centers in the United States, Europe and Japan, 
techniques of rigorous exercise have helped numerous persons with 
paraplegia with limited sensations in their lower bodies walk for short 
distances, unassisted or using walkers.
  While the results of these new methods are quite promising, the 
limits of what physical exercise can do for patients remains grossly 
understudied. While each person and each injury is unique, and some 
people recover spontaneously, an estimated 250,000 Americans are living 
with spinal cord injuries that have not improved. Which therapy or 
combination of therapies will work for each person is unknown. Today 
two million Americans are living with paralysis, including spinal cord 
injury, stroke, cerebral palsy, multiple sclerosis, ALS and spina 
bifida. We need research to see how these new interventions work on the 
entire population of individuals with paralysis.
  What we do know is the ordinary repetitive motions used in most 
rehabilitation centers, like squeezing a ball, are almost certainly not 
enough to appropriately address neurological injuries.
  Patients are usually told that after one year, two at the most, they 
will never make further progress in their abilities to move or feel 
sensation. Yet eight years after his accident, through a rigorous 
exercise plan, Chris is finally seeing results.
  Due to efforts led by the National Institutes of Health and the 
Christopher Reeve Paralysis Foundation, our Nation stands on the brink 
of amazing

[[Page S5862]]

breakthroughs in science for those with paralysis. However, the biotech 
and pharmaceutical industries have not invested in paralysis research 
because they believe the market does not support the private 
investment. There is an urgent need for the Federal Government to 
further step up its commitment in this area. The Christopher Reeve 
Paralysis Act would do just that.
  By establishing Paralysis Research Consortia at the National 
Institute of Neurological Disorders and Stroke, we can substantially 
increase our ability to capitalize on research advances in paralysis. 
These consortia would be formed to explore unique scientific expertise 
and focus across the existing research centers at NINDS in an effort to 
further advance treatments, therapies and developments on one or more 
forms of paralysis that result from central nervous system trauma and 
stroke.

  Additional breakthroughs are underway in rehabilitation research on 
paralysis. Federal funding for rehabilitation research at the National 
Center for Medical Rehabilitation Research at NIH is showing real 
potential to improve functional mobility; prevent secondary 
complications like bladder and urinary tract infections and ulcers; and 
to develop improved assistive technology. These rehabilitation 
interventions have the potential to greatly reduce pain and other 
complications for people with neurological disorders and stroke and, at 
the same time, save millions in health care costs.
  Over the past 20 years, overall days in the hospital and 
rehabilitation center for those with paralysis have been cut in half. 
Those with paralysis face astronomical medical costs, and our best 
estimates tell us that only one-third of those individuals remain 
employed after paralysis. At least one-third of those with paralysis 
have incomes of $15,000 or less.
  To date, there are no State-based programs at CDC that address 
paralysis and other physical disability with the goal of improving 
health outcomes and prevent secondary complications. This bill will, 
for the first time, ensure that individuals with paralysis get the 
information they need; have access to public health programs; and 
support in their communities to navigate services. Ultimately these 
programs will help remove the barriers to community participation and 
help improve quality of life. The bill also establishes hospital-based 
registries on paralysis to collect needed data on the true numbers of 
individuals with these conditions, and it invests in population-based 
research to see how various therapies impact different people.
  We are on the brink of major breakthroughs for individuals with 
neurological disorders and stroke that result in paralysis. This bill 
will ensure that the federal government does its part to help more than 
2 million Americans.
  When Christopher Reeve was injured, he put a face on an issue that 
has been neglected for too long. Since then, his tireless efforts to 
walk again, coupled with his passion and commitment to improve quality 
of life for others with paralysis, make him an inspiration to all 
Americans.
  It is a pleasure and an honor to lead a bipartisan group of Senators, 
along with the support of a number of disability groups, including the 
American Stroke Association, the American Heart Association, the 
Christopher Reeve Paralysis Foundation, the National Family Caregivers 
Association, the National Spinal Cord Injury Association, Paralyzed 
Veterans of America and Easter Paralyzed Veterans, in introducing this 
bill.
                                 ______