[Congressional Record Volume 143, Number 89 (Monday, June 23, 1997)]
[Extensions of Remarks]
[Page E1298]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        STATEMENT ON ALS RESEARCH, TREATMENT AND ASSISTANCE ACT

                                 ______
                                 

                          HON. WALTER H. CAPPS

                             of california

                    in the house of representatives

                         Monday, June 23, 1997

  Mr. CAPPS. Mr. Speaker, together with my colleague Ben Gilman, I am 
today introducing the Amytrophic Lateral Sclerosis [ALS] Research, 
Treatment and Assistance Act of 1997. This bill is designated to assist 
individuals with ALS, encourage advances in treatment, and accelerate 
research support at NIH.
  The terrible nature of ALS was recently brought home to me through a 
very close friend of mine, Tom Rogers, who is suffering from this 
disease. Tom has been an able and compelling legislator, and a leader 
in the environmental movement in Santa Barbara County. His struggle 
with this disease has been heroic and an inspiration to all who know 
him. During my campaign for Congress, Tom gave me his running shoes 
which he said he no longer had any use for due to the debilitating 
aspects of ALS. I wore those shoes through the months leading up to my 
election. To this day, that gesture of friendship and support has 
continued to be a source of inspiration for me.
  While most of us know of the famed baseball star for which this 
disease is named, many of us are unaware of the tragic consequences of 
Lou Gehrig's Disease. First diagnosed over 130 years ago, ALS is a 
progressive, fatal neuromuscular disease afflicting 25,000 to 30,000 
individuals in the United States today. Approximately 5,000 new cases 
are reported every year.
  Victims of the disease are struck by a creeping paralysis that 
eventually leaves them unable to eat or even breathe. There is no cure 
for ALS and researchers are just now beginning to understand what kills 
the nerve cells in the brain and spinal cord that lead to the disease's 
destructive effects. ALS usually strikes people in their 50's or later 
and life expectancy is a mere 3 to 5 years.
  My bipartisan bill would waive the 24-month waiting period for 
Medicare eligibility on the basis of disability for ALS patients. This 
is only fair since life expectancy following diagnosis is often shorter 
than the waiting period and most ALS patients will have paid into the 
Social Security system well before the onset of ALS.
  Disabled people under age 65 are eligible for Social Security 
Disability Insurance and Medicare benefits. However, there is a 5-month 
waiting period from the onset of the disability until SSDI benefits are 
granted and then a further 24-month waiting period for Medicare 
eligibility. Unfortunately, since ALS patients' life expectancy is only 
36 to 60 months, the 29-month waiting period leave them little time to 
participate in Medicare. This is unfair as most ALS patients have had 
productive working lives prior to onset of the disease and an estimated 
17,000 of them are not age-eligible for Medicare. The cost of assisted 
living care and various effects of the disease can leave many patients' 
families financially drained. Victims of end stage renal disease, who 
experience a similar life expectancy as ALS patients, are granted this 
waiver.
  The Capps-Gilman bill would provide Medicare coverage for outpatient 
drugs and therapies for ALS. This provision would ensure patient access 
to such treatments and help spur the development of new treatments for 
ALS. Currently, Medicare part B provides drug coverage for five other 
afflictions: oral cancer, clotting factors, immuno suppressives, 
osteoporosis, and hemophilia.
  Finally, this legislation would double Federal funding of research 
into the cause, treatment, and cure of ALS. NIH-sponsored ALS research 
totaled only $12 million in fiscal year 1996. Clearly, more must be 
done. Recent advances in ALS research have produced promising leads, 
many related to shared disease processes that appear to operate in many 
neurodegenerative diseases. Increased research funding for NIH can 
speed up work on these promising leads.
  Mr. Speaker, I urge the support of my colleagues for this critically 
important legislation.

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