{"database": "openregs", "table": "congressional_record", "rows": [["CREC-2000-12-15-pt1-PgS11821-2", "2000-12-15", 106, 2, null, null, "ASSISTANCE FOR ALS PATIENTS", "SENATE", "SENATE", "ALLOTHER", "S11821", "S11822", "[{\"name\": \"Robert G. Torricelli\", \"role\": \"speaking\"}]", null, "146 Cong. Rec. S11821", "Congressional Record, Volume 146 Issue 155 (Friday, December 15, 2000)\n\n[Congressional Record Volume 146, Number 155 (Friday, December 15, 2000)]\n[Senate]\n[Pages S11821-S11822]\nFrom the Congressional Record Online through the Government Publishing Office [www.gpo.gov]\n\n                      ASSISTANCE FOR ALS PATIENTS\n\n  Mr. TORRICELLI. Mr. President, 3 years ago, during a visit by a\nconstituent, I met a young man from southern New Jersey named Kevin\nO'Donnell. I have shared his story with the Senate before. But on this\nday, having met with some success, I share it with you again.\n  Five years ago, Kevin was 31 years old. He was a young father, a\nhusband of a lovely woman, and in perfect health. He took his daughter\nskiing one day and upon returning home felt a pain in his leg. It\ncontinued over a period of time, bothering him, so he went to visit the\ndoctor. You can only imagine the shock when this perfectly healthy\nyoung man--father of this little girl--discovered he had been stricken\nwith ALS, known to most of us as Lou Gehrig's disease.\n  Since that day, Kevin O'Donnell's wife and daughter have watched the\nlife flow out of his body. Going from a healthy young man, they watched\nhim lose control of his legs and arms, the ability to speak, and even\nthe ability to breathe. Life simply evaporated from Kevin O'Donnell's\nbody.\n  When he came in to see me those years ago, he had a very simple\nrequest--so logical I could not conceive of an argument against it.\nWhile he was waiting to die, not only was his life leaving him but the\nfinancial security of his family. Nursing care, medical assistance,\nthings to ease the pain, to maintain some dignity in life, to provide\nrelief for his wife and his family, were costing thousands of dollars.\n  But under the rules of Medicare, he could not begin to receive any\nassistance for 2 years. The life expectancy for 90 percent of ALS\nsufferers is only 3 years, 4 years. Most of the people who have ALS do\nnot live beyond the waiting period in Medicare to get help. This never\ncould have been anticipated. It never could have been even imagined by\npeople in Medicare when these regulations were written. And because\nthere is no other disease quite like it, the regulations have never\nbeen changed.\n  A person can have heart disease or cancer, and they may be at great\nrisk, but they can live 2 years. With the right treatment, they can\nlive 5, 10, 20 years; at least the chances are always good. With ALS,\nthe outcome of the disease is nearly certain that the life expectancy\nis not long and most will not live to ever see their first dollar of\nGovernment help.\n  I brought this cause to many of my colleagues in the Congress. There\nare 28 Members in the Senate--16 Democrats and 12 Republicans--and over\n280 Democrats and Republicans in the House of Representatives who have\njoined in this effort to help those people around the country who are\nstricken with Lou Gehrig's disease.\n  Today, I rise to thank Senator Lott and Speaker Hastert for their\ngenerous help, and Congressman Gephardt, Senator Daschle, Senator Byrd,\nSenator Reid--the bipartisan leadership--for offering some help to\nthose who suffer from this disease in this country.\n  But most importantly, I am also very indebted to President Clinton,\nwho made this a critical priority in budget negotiations. Specifically,\nI thank members of the White House staff, Chris Jennings and Rich\nTarplin, who, under the President's direction, fought to give some help\nto these Lou Gehrig's disease patients.\n  I have spoken on this floor many times about this cause. For me, this\nwas a victory that was going to be won before this session of Congress\nended--no matter what.\n  When I began this effort some years ago, I stood outside the Senate\nChamber with people in wheelchairs, stricken with ALS, in a variety of\nconditions. As I stand here today to declare victory, I am mindful of\nthe fact that most of those who stood with me when this effort began\nare now deceased. With their own lives, they proved the\n\n[[Page S11822]]\n\nimportance of the legislation. They said they could not live the 2\nyears to ever receive the Medicare assistance to help ease the\nfinancial burden on their families. Most of them proved it with their\nlives.\n  Today, the CBO estimates that there are 17,000 ALS patients waiting\nto become eligible for Medicare. With the passage of this bill, their\nwait will end, and with it the anguish of calculating how to afford the\n$250,000 in annual medical bills while they are also dealing with the\nanguish of their disease.\n  For me, it is the end of a long fight, where I can tell Kevin\nO'Donnell: You began it, you fought it, and we won. And in your victory\ncomes relief for 17,000 people just like you.\n  To all my colleagues who have helped, I give you my most sincere\nthanks and leave you with the words of former President Thomas\nJefferson, in 1809, who said about service in Government:\n\n       The care of human life and happiness . . . is the first and\n     only legitimate object of good government.\n\n  Mr. President, there is relief for ALS patients in this bill. That is\ngood government.\n  I yield the floor.\n\n                          ____________________"]], "columns": ["granule_id", "date", "congress", "session", "volume", "issue", "title", "chamber", "granule_class", "sub_granule_class", "page_start", "page_end", "speakers", "bills", "citation", "full_text"], "primary_keys": ["granule_id"], "primary_key_values": ["CREC-2000-12-15-pt1-PgS11821-2"], "units": {}, "query_ms": 42.728144908323884, "source": "Federal Register API & Regulations.gov API", "source_url": "https://www.federalregister.gov/developers/api/v1", "license": "Public Domain (U.S. Government data)", "license_url": "https://www.regulations.gov/faq"}