A hearing this morning before the U.S. Senate’s Labor, Health and Human Services and Education Appropriations Subcommittee focused on A-L-S, the disorder sometimes called Lou Gehrig’s Disease. It attacks the nerves that control “voluntary” muscles, and as the disease progresses, the patient has increasing trouble with moving, talking and even swallowing. Iowa U.S. Senator Tom Harkin says witnesses came to testify and also make the case for more aggressive A-L-S research. Harkin told the witnesses that they remind the lawmakers A-L-S is not just about statistics, “It’s about the suffering of real human beings, our friends and our family.” He says their visit couldn’t come at a more crucial time. It’s 60 years since Loyu Gehrig died, but the senator says there’s still only one drug approved by the FDA to treat the disease, and that medication only extends life by a few months. Five-thousand Americans are diagnosed with ALS each year and Harkin says for some reason nobody understands, military veterans are especially susceptible. Among those traveling to Washington to testify is a columnist for the Des Moines Register. Rob Borsellino was diagnosed with A-L-S a few months ago. Another witness is Roger Gould of Ames, who also traveled to Washington to tell how he’s fought the disease for ten years. Iowa newspaper columnist Rob Borsellino testified today in Washington at a hearing on A-L-S…Lou Gehrig’s disease. He joked about being originally from New York, though he’s worked in radio, television and newspapers in Iowa for years. Borsellino jokes that when a U.S. Senator calls and asked you to “testify,” and you’re an Italian from the Bronx, there’s a moment of hesitation. But he quickly got serious. He’s 55, has a wife and two sons, and says up to now he’s been in pretty good health. “I don’t drink, I don’t smoke, can’t remember the last time I had a joint,” he says, to another scattering of laughter. Back i November he says his words started slurring and he was tired and felt weak all the time. Friends started asking if he was drinking, he says, and he saw a doctor — who sent him to a specialist. After a lot more tests, the doc told him he had a “fatal, incurable, exotic-sounding disease — A-L-S.” Then the doctor told him most people with it live two to five years. He says he’s been around the country to visit three other nerve specialists…and though they tell him the same thing, he says he’s in denial. “I won’t be there for my kids’ weddings, I won’t know my grandkids,” he says, and instead is having to write his will and deal with insurance companies. Worst of all he says is learning there’s only FDA-approved one medication for the condition, which might keep a patient alive “another two or three months.” Borsellino admitted he’d tried yoga, acupuncture, and even Chinese herbal medicine. “It’s the only way I fell I can engage in this stuff, rather than just and wait for things to get worse.” He says some patients go to foreign countries to get treatments using stem cells, which are banned in the U.S. Borsellino says it’s frustrating that so little is known about his disease. “You talk to your kids, you say ‘be careful, use sunscreen, don’t drink and drive, practice safe sex’ but with A-L-S that stuff is worthless — it’s always a death sentence.” Borsellino added it’s Little League season right now, and he can no longer play catch with his 15-year-old son. A-L-S, amyotrophic lateral sclerosis, is a degenerative neurological disease named after Yankees baseball player Lou Gehrig, who was diagnosed with it in the 1930s.
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