The Department of Veterans Affairs plans to provide full disability payments for Lou Gehrig's disease, tacitly acknowledging for the first time a generalized link between the fatal neurological disorder and military service.
Veterans and patient advocates have advocated the change for years, citing studies showing that former soldiers are more likely than the general population to contract the disease, formally known as amyotrophic lateral sclerosis, or ALS.
The VA already extends full compensation to ALS-stricken veterans of the first Persian Gulf war, who, according to a study earlier this decade, are twice as likely as other service members to contract the disease.
Scientists don't know the cause of ALS, and various studies in the past decade have failed to identify a specific link with conditions of military service. But the higher incidence of ALS among veterans has led to comparisons with the controversy over Agent Orange, a highly toxic herbicide sprayed by the U.S. military over Vietnam and blamed for illnesses afflicting thousands of veterans.
ALS is believed to afflict several thousand former service members.
"We cannot rule it in as being service-connected, but we can't rule it out," said Bernard Rostker, a senior fellow at the RAND Corp. and former special assistant to the deputy defense secretary for Gulf War illnesses. "Given the nature of the disease and the nature of care that is required, I think it is just a wonderful move by the administration. ... It's the right thing to do."
A department spokesman said that the VA secretary, Dr. James Peake, has tentatively decided to designate ALS as a "service-connected disability" but that details are still being worked out and must be reviewed by government lawyers.
The tentative policy change was announced this month by Sen. Lindsey Graham and Rep. Henry E. Brown Jr., both South Carolina Republicans, who said the disability payments could be offered as early as Aug. 1.
Graham and Brown had proposed legislation requiring the change at the urging of a retired Air Force general with ALS.
Named after Lou Gehrig, the legendary New York Yankees first baseman who was its most prominent victim, ALS afflicts about 30,000 Americans. It progressively kills motor neurons until paralysis sets in, though the mind stays sharp. Most patients die within five years of diagnosis.
Typically, veterans applying for disability compensation from the VA must prove that their condition is related to military service. If ALS becomes "service-connected," the department would presume that the victim had contracted it through military service and would automatically qualify for payments.
Designating an illness as service-connected - as opposed to evaluating each case individually - is rare, said a VA spokesman, Jim Benson.
With the change, veterans would receive full medical coverage, funds to buy equipment such as ramps and wheelchair-accessible vans and monthly disability payments. Their families would also be eligible for disability payments after the veterans die.
Advocates say the cost of the benefits will be minimal because the disease is so rare.
Edmund Sistek, an Army veteran who lives in Pikesville, said the extra compensation would amount to "pocket change" for the government but greatly improve the quality of life for dying veterans.
"There's a lot of guys out there not as fortunate as me to have been able to make enough money during their natural lives to afford the health care benefits I could afford," said Sistek, a retired middle school teacher.
Sistek, who served with the Army for three years in the Panama Canal zone in the 1970s, was diagnosed with the disease a decade ago. He increasingly has trouble moving around and talking.
In the years after the 1990-1991 Gulf War, ALS was one of the ailments grouped in the broad category of veterans' medical problems known as Gulf War syndrome. Many tudies have looked at potential causes for these ailments, including toxic emissions from oil well fires, exposure to depleted uranium munitions, pesticides, inoculations against infectious diseases and consumption of anti-nerve gas tablets. But none has been identified.
The VA extended full benefits to ALS-stricken veterans of the first Gulf War in 2001, after a study released by the Defense and Veterans Affairs departments showed that Gulf War vets were twice as likely as other soldiers to get ALS. It did not suggest possible causes.
A study several years later reported that veterans were 60 percent more likely than the general population to contract ALS. The VA also funded a registry between 2002 to 2007 that identified more than 2,100 veterans with ALS. Many have since died.
Researchers at Duke University are in the final year of a five-year ALS study funded by the National Institutes of Health, the most ambitious attempt so far to interview veterans on the ALS registry and identify links between ALS and military service.