Date: Tue, 28 Mar 2000 12:08:19 -0700

Hi Ilena Please Post, Thanks, Martha M. Link between Gulf War, Lou Gehrig's disease sought

03/28/2000

Private and government scientists are investigating whether Persian Gulf War veterans have developed amyotrophic lateral sclerosis, or Lou Gehrig's disease, at a higher-than-expected rate.

Associated Press Dr. Robert Haley of Dallas is the lead researcher in a study of sick Gulf War veterans.

Officials with the Department of Veterans Affairs announced Monday that the agency, with the Department of Defense, is conducting a nationwide study. A separate investigation at the University of Texas Southwestern Medical Center at Dallas, funded in part by the Perot Foundation, has been under way for more than a year.

Robert Haley, chief of epidemiology at UT Southwestern, said there is "an impression" - still unproven - that a disproportionately high number of Gulf War veterans have developed the disease, also known as ALS, and at a much younger age than is typical among civilians. "If we were to see a large number of cases of ALS in people in their 30s, then that would be an unusual occurrence," said Dr. Haley, the lead researcher in a long-running examination of sick Gulf War veterans. Normally, he said, ALS is "a disease of the late 50s, 60s and 70s." Dr. Haley said his research is about 90 percent done but that he is looking for additional Gulf War veterans to include in the study.

ALS is a degenerative and fatal disease that attacks brain and spinal cord nerve cells that control muscle movement. The patient's muscles weaken, leading to paralysis. The cause is not known.

Answers sought Many afflicted veterans and their families feel more research is needed into a possible link between ALS and service in the Gulf. Some veterans are critical of the government's response to the mysterious ailments they experienced after returning from the Gulf. They say the government has been slow to recognize they are sick, slow to provide benefits and slow to conduct research that might lead to treatment. Government officials have acknowledged some problems but say they are aggressively working to find answers. Randy Hebert, 37, of Emerald Isle, N.C., was a Marine Corps officer who fought in Kuwait. When he returned, he suffered from rashes. He had trouble with insomnia and bouts of depression. He began having problems with muscle deterioration in 1994, and learned he had ALS in 1995.

The once-fit Marine, the father of a 6-year-old daughter and a 5-year-old son, is virtually immobile and on a ventilator. Family members think his ALS may be connected to his exposure to chemicals in the Gulf, but they don't have any answers. "Still, we're nowhere," said his wife, Kim Hebert. "It's just a shame to think these guys have been through so much, yet we're still at square one.

. . . The government still hasn't owned up to, really, anything." Mike Donnelly flew 44 combat missions in his F-16 during the war. He was medically discharged from the Air Force in 1996. He's unable to talk and has "lost everything except the very minimal and difficult ability to move his head," said his father, Tom Donnelly, of South Windsor, Conn. "What bothers me is . . . this mule-headed posture that there's no connection between Gulf War service and ALS," said the elder Mr. Donnelly. Government officials, he said, are "caving to the degree that they must on the facts that are stuffed under their noses." Government findings Government scientists had concluded, based on a preliminary review, that there was no substantial increase in the rate of ALS among Gulf veterans. John R. Feussner, the VA's chief research and development officer, said that the data was examined again at the request of several veterans groups.

"The results are highly preliminary, but the age distribution appeared to be younger than we expected," Dr. Feussner said. He said a problem with the preliminary study was that it looked exclusively at veterans who received their medical care from the VA. The study announced Monday, he said, will also look at those who have not received care from the VA. He said he was sympathetic to the frustration of veterans. "When you go to see the doctor, you're never happy when he doesn't seem to be able to tell you what's wrong and how to get rid of it," he said. "You can't blame them for being worried and fearful and wanting to get better."

Claim rejected Establishing a link between veterans' medical condition and their service in the Gulf could have a substantial economic impact on families. Those who were on active duty when their illness was diagnosed typically get benefits. Those who become ill after being discharged, and can't prove their medical problems are related to their military service, may have to pay for their own medical treatment. Robert Booker was a National Guardsman from Monroeville, Ala., who served in the Gulf as a mechanic. He started experiencing mysterious ailments, including rashes and balance problems, shortly after he returned home. In 1996, Mr. Booker, a biomedical technician in civilian life, began dropping his tools unexpectedly. He learned he had ALS in October 1997. He was 35 when he died last month.

His wife, Lynn Booker, said the VA rejected his claim for benefits. She is left with their two girls, ages 7 and 2, and "quite a few medical bills still outstanding." Mrs. Booker said her husband was patriotic to the end. But he also was hurt that, after serving his country, the government didn't help him when he needed it. "He never got a wheelchair from them. He got nothing," she said. Gulf War veterans with ALS interested in participating in the study at UT Southwestern can call 214-648-3110. Scientists with the government study can be contacted at 1-877-DIAL-ALS (1-877-342-5257).