congressional_record: CREC-2000-12-15-pt1-PgS11821-2
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| CREC-2000-12-15-pt1-PgS11821-2 | 2000-12-15 | 106 | 2 | ASSISTANCE FOR ALS PATIENTS | SENATE | SENATE | ALLOTHER | S11821 | S11822 | [{"name": "Robert G. Torricelli", "role": "speaking"}] | 146 Cong. Rec. S11821 | Congressional Record, Volume 146 Issue 155 (Friday, December 15, 2000) [Congressional Record Volume 146, Number 155 (Friday, December 15, 2000)] [Senate] [Pages S11821-S11822] From the Congressional Record Online through the 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 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 [[Page S11822]] 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. ____________________ |