Ride For Life: ALS - A Gulf War Legacy

After years of denying a link, the government is tying Lou Gehrig's disease to military service.

Before his death at 35, Robert Booker was convinced that his Gulf War service was somehow connected to his wasting away by amyotrophic lateral sclerosis. After all, he was young, and most of the 30,000 Americans who contract ALS (also known as Lou Gehrig's disease) are well over 45. For the two years after he was diagnosed in 1997--when he was alreadyincapacitated--his wife, Lynn, tried to get the Department of Veterans Affairs to give Robert health benefits--a wheelchair and respirator, nursing, help with the $ 2,000 a month in drug prescriptions not covered by their health insurance. Her requests were repeatedly bounced back, with the ruling that she lacked evidence linking ALS to military service. She and their two young daughters watched Booker crawl around the house, melting away from the disease that wastes muscles and kills its victims in three to five years. Risk reversal. So it was with mixed feelings last week that Lynn Booker-Warren, in her home in Milledgeville, Ga., heard the secretary of veterans affairs, Anthony J. Principi, announce that a massive epidemiological study sponsored by the VA indicates that Robert was right. Indeed, veterans who served in the Persian Gulf War are nearly twice as likely as other soldiers to suffer from ALS. As a result, Principi said, Gulf War veterans with ALS, or their survivors, would be immediately and retroactively compensated. He justified announcing the findings even before they were published in a peer-reviewed scientific journal because "those veterans who have contracted the disease cannot wait for the peer review . . . . They need help now."

The study involved 2.5 million veterans: nearly 700,000 who were in the Gulf War and 1.8 million who were not. Even though the results directly relate to only 40 Gulf War vets, many of whom are already dead, the findings were heralded by some veterans groups as a major victory in their 10-year fight to have their symptoms connected to their deployment in the gulf. Reports of fatigue, muscle weakness, depression, and memory loss, among other symptoms, have so far been clustered under the rubric "Gulf War syndrome," but that illness itself has never been clearly defined or linked to deployment. Today, of the 697,000 Gulf War veterans, more than 370,600 are being compensated for a variety of service-connected disabilities.

This ALS epidemiological study tracks only the pattern of the disease. It does not attempt to tease out its causes. That is a more complicated job, says John R. Feussner, the chief of research and development for the VA. After the Vietnam War, the Pentagon finally made a connection between high rates of cancer and exposure of soldiers to the exfoliant dioxin, or Agent Orange. "The exposures the soldiers experienced during the Gulf War are not so clear," says Feussner. Oil-well fires, possible chemical or biological weapons, and combat medications and vaccines are all possible variables.

For many veterans, however, that knowledge is irrelevant. "They said the veterans will be compensated," says Booker-Warren. "The veterans are dead, and the ones who aren't are on ventilators, can't eat, can barely breathe. What good does it do them?"