[Congressional Record (Bound Edition), Volume 146 (2000), Part 18]
[Senate]
[Pages 27129-27130]
[From the U.S. Government Publishing Office, www.gpo.gov]



                      ASSISTANCE FOR ALS PATIENTS

  Mr. TORRICELLI. Mr. President, 3 years ago, during a visit by a 
constituent, I met a young man from southern New Jersey named Kevin 
O'Donnell. I have shared his story with the Senate before. But on this 
day, having met with some success, I share it with you again.
  Five years ago, Kevin was 31 years old. He was a young father, a 
husband of a lovely woman, and in perfect health. He took his daughter 
skiing one day and upon returning home felt a pain in his leg. It 
continued over a period of time, bothering him, so he went to visit the 
doctor. You can only imagine the shock when this perfectly healthy 
young man--father of this little girl--discovered he had been stricken 
with ALS, known to most of us as Lou Gehrig's disease.
  Since that day, Kevin O'Donnell's wife and daughter have watched the 
life flow out of his body. Going from a healthy young man, they watched 
him lose control of his legs and arms, the ability to speak, and even 
the ability to breathe. Life simply evaporated from Kevin O'Donnell's 
body.
  When he came in to see me those years ago, he had a very simple 
request--so logical I could not conceive of an argument against it. 
While he was waiting to die, not only was his life leaving him but the 
financial security of his family. Nursing care, medical assistance, 
things to ease the pain, to maintain some dignity in life, to provide 
relief for his wife and his family, were costing thousands of dollars.
  But under the rules of Medicare, he could not begin to receive any 
assistance for 2 years. The life expectancy for 90 percent of ALS 
sufferers is only 3 years, 4 years. Most of the people who have ALS do 
not live beyond the waiting period in Medicare to get help. This never 
could have been anticipated. It never could have been even imagined by 
people in Medicare when these regulations were written. And because 
there is no other disease quite like it, the regulations have never 
been changed.
  A person can have heart disease or cancer, and they may be at great 
risk, but they can live 2 years. With the right treatment, they can 
live 5, 10, 20 years; at least the chances are always good. With ALS, 
the outcome of the disease is nearly certain that the life expectancy 
is not long and most will not live to ever see their first dollar of 
Government help.
  I brought this cause to many of my colleagues in the Congress. There 
are 28 Members in the Senate--16 Democrats and 12 Republicans--and over 
280

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Democrats and Republicans in the House of Representatives who have 
joined in this effort to help those people around the country who are 
stricken with Lou Gehrig's disease.
  Today, I rise to thank Senator Lott and Speaker Hastert for their 
generous help, and Congressman Gephardt, Senator Daschle, Senator Byrd, 
Senator Reid--the bipartisan leadership--for offering some help to 
those who suffer from this disease in this country.
  But most importantly, I am also very indebted to President Clinton, 
who made this a critical priority in budget negotiations. Specifically, 
I thank members of the White House staff, Chris Jennings and Rich 
Tarplin, who, under the President's direction, fought to give some help 
to these Lou Gehrig's disease patients.
  I have spoken on this floor many times about this cause. For me, this 
was a victory that was going to be won before this session of Congress 
ended--no matter what.
  When I began this effort some years ago, I stood outside the Senate 
Chamber with people in wheelchairs, stricken with ALS, in a variety of 
conditions. As I stand here today to declare victory, I am mindful of 
the fact that most of those who stood with me when this effort began 
are now deceased. With their own lives, they proved the importance of 
the legislation. They said they could not live the 2 years to ever 
receive the Medicare assistance to help ease the financial burden on 
their families. Most of them proved it with their lives.
  Today, the CBO estimates that there are 17,000 ALS patients waiting 
to become eligible for Medicare. With the passage of this bill, their 
wait will end, and with it the anguish of calculating how to afford the 
$250,000 in annual medical bills while they are also dealing with the 
anguish of their disease.
  For me, it is the end of a long fight, where I can tell Kevin 
O'Donnell: You began it, you fought it, and we won. And in your victory 
comes relief for 17,000 people just like you.
  To all my colleagues who have helped, I give you my most sincere 
thanks and leave you with the words of former President Thomas 
Jefferson, in 1809, who said about service in Government:

       The care of human life and happiness . . . is the first and 
     only legitimate object of good government.

  Mr. President, there is relief for ALS patients in this bill. That is 
good government.
  I yield the floor.

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