The One Willing To Speak Up In This Conversation...

...is the one whose disease is stealing her ability to talk.

http://www.tulsaworld.com/news/article.aspx?articleID=20080412_1_A13_hShew08807

ALS patient fighting back by: JIM MYERS World Washington Bureau4/12/2008 12:00 AM
She wants to know why Sen. Tom Coburn is blocking a bill to create a national patient registry. WASHINGTON -- Sherry Owens clearly is frustrated. The Sulphur businesswoman, wife and mother of two grown sons is suffering from Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig's disease. With her muscles collapsing, Owens, 53, must use a wheelchair, but that's not what she wants to focus on these days. Owens' frustration is caused by some of the responses she has been receiving from U.S. Sen. Tom Coburn's office to her questions about why the Oklahoma Republican is blocking a bill to create a national ALS patient registry. "It is like talking to a brick wall when you call up there," she said. Owens also took issue with what she saw as sarcasm from one of the senator's aides as he explained how Coburn came up with the scores of holds he has put on various bills. "That really set me off," she said, adding that the response played a part in her decision to take her concerns public. "I am so sick and tired of hearing those answers." Coburn would not comment. Senate Majority Leader Harry Reid, D-Nev., who introduced the bill to create an ALS patient registry, says it will improve understanding of the debilitating disease and possibly boost chances for a cure. Reid's version of the bill authorized $25 million for the first year with additional funds to be added later; an amended version changed the funding to authorize $43 million over the next several years. Co-sponsors range from liberal Democrats to conservative Republicans. Reid spokesman Jim Manley said Coburn "is blocking a bipartisan, broadly supported bill that has 72 co-sponsors and would easily pass the Senate. It is a particular shame that Coburn is dragging his feet on this by creating a tyranny of one, considering ALS patients have so little time." Patrick Wildman, an official with the Washington, D.C., office of the ALS Association, said no one with that group could comment on the bill or its status. Owens said she has nothing to lose by going public with her frustrations. She points out that ALS has been well-known for decades because of Lou Gehrig; she considers a registry only as a starting point. "They are not doing enough for a disease like ALS," she said, conceding that the number of ALS sufferers is small compared with people with AIDS or cancer. But Owens said such comparisons become meaningless when ALS hits home. She questioned why Coburn, who often cites his experiences as a physician, would take the position he has taken on a bill dealing with a disease. Owens' problems had begun several years earlier, but she was diagnosed with ALS two years ago. ALS is a progressive neu rodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS patients in the later stages of the disease may become totally paralyzed, and the disease eventually leads to their deaths. A registry "is not going to save my life," Owens said, but she added that at this point, any improvements in how people with ALS now live would be welcome. "I don't want to have this conversation with somebody else 10 years from now because nothing was done," she said. "My God, it has been years. Most of us don't have a lot of time to waste."