ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Friday, August 15, 2008

Rekha Basu - The DesMoines Register

Column in the August 15 DesMoines Register

Registry could help unlock secrets of ALS
REKHA BASU
rbasu@dmreg.com

The obituary page last Wednesday had two prominent tributes to Central Iowans who died within a day of each other. Velma Miklus of Des Moines was a 75-year-old grandmother. Roger DeGroot of Urbandale was a 49-year-old father. Linking them was the cause of death: ALS. Until recently, few people even knew about the illness that kills about 60 Iowans a year.

Though 20,000 Americans are living with amyotrophic lateral sclerosis, it's hard for them or their loved ones, consumed with the demands of daily care, to be out raising awareness or lobbying for a cure. It attacks fast, usually killing within two to five years, first stripping the ability to walk, talk, swallow or breathe on one's own.

Still it's baffling that 67 years after the death of Yankees legend Lou Gehrig, we have no idea what causes ALS, or the failure of motor neurons (nerve cells) that defines it. In about 95 percent of cases, it seems to strike at random. Researchers don't even know what environmental, occupational, family history or other factors may link people with ALS.With so little to go on, the 5,600 people diagnosed every year know only that it is a death sentence. There are clinical trials but, so far, nothing promising. There's the prospect of embryonic stem-cell surgery - once the ban on federal research on it is lifted.


At the very least, there should be a national database of patients so researchers can findpatterns. But a bipartisan bill in the U.S. Senate to create one is being blocked by one senator, Republican Tom Coburn of Oklahoma.The bill would create a national ALS registry at the Centers for Disease Control. The House passed it 411 to 3. In the Senate, 77 members are co-sponsors. In response to Coburn's unilateral roadblock of that and other legislation, Senate Democratic leaders last month included the ALS Registry in an omnibus bill called Advancing America's Priorities. But Republicans filibustered that, too.

Coburn objects to any disease-specific legislation, says his spokesman John Hart; he also put a hold on a breast-cancer research act. He thinks the CDC and the National Institute of Health should make their own decisions: "It's really about members of Congress wanting to reap the political benefits of an emotionally sensitive target," said Hart. Mostly, though, what Coburn objects to is the $75 million he says it would cost, though he also opposes the bill without any funding.

Coburn, by the way, is a doctor.


A CDC spokeswoman, however, acknowledged what advocates in the ALS community say the bill would provide congressional authority to do: coordinate with other agencies such as the NIH and Veterans Administration.

There are 250 Iowans living with ALS. Jason Lee, who heads the Iowa chapter of the national ALS Association, sees a database as essential. "A lot of doctors are locked because we don't have good patient information," he says. Lee says there are registries for other illnesses, such as lupus.


Theories abound linking ALS to printing presses, metals, farm chemicals, wars. It seems to strike veterans with greater frequency, and Gulf War veterans 50 percent more than the general population. Maybe if we knew what else sufferers have in common, we could learn why.


There's a move afoot to try to bring the act (Senate file 3297) to a floor vote when the Senate reconvenes next month. Lee urges proponents in every state to lobby their senators.


Even with a registry, a cure is probably a long way off. But without one, there's almost nothing to go on. Once you've seen this insidious illness up close, as I did watching my late husband suffer from it, you can't turn your back. Nor can you fathom how a politician can deliver such a hard slap to any hope on the horizon.


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