Government sponsors latest ALS study

WASHINGTON, September 7, 2000 (GulfLINK) - Further research into whether service in the Gulf War caused many veterans to contract a fatal neurodegenerative disease was launched by the federal government in March. The research was prompted by the belief of many veterans that their diagnosis of amyotrophic lateral sclerosis, or ALS, was related to their service during the war with Iraq.

In this new one-year study , researchers from the departments of Defense, Veterans Affairs and Health and Human Services hope to determine if there is a higher number of ALS cases among military veterans who are Gulf War veterans.

"Unfortunately, we wouldn't have known if veterans got ALS after they left [the service]," said Michael E. Kilpatrick, M.D., deputy director of medical outreach and issues in the special assistant's office for Gulf War illnesses. The office has been monitoring the incidence of ALS for several years.

"If ALS is determined to be more prevalent among Gulf War veterans than among the population at large or than among veterans who did not deploy, it could lead to the disease being considered service-connected, even in veterans who come down with it years after leaving the service," continued Kilpatrick. "Currently, the symptoms for ALS must be documented during active duty or within one year of leaving service for the disease to be considered service-connected."

Often referred to as Lou Gehrig's disease, ALS is a fatal neurodegenerative disease that destroys the brain and spinal cord nerve cells controlling muscle movement. As the brain and spinal cord motor nerve cells die, muscles weaken and shrink, and rapid, severe paralysis occurs. The cause is unknown, and there is no known cure.

"We need to identify as completely as possible the number of cases of ALS among Gulf War veterans in order to determine if there is any relationship between ALS and service in the war," said John R. Feussner, M.D., the VA's chief research and development officer.

"We really do not know what we will find with this research effort," Feussner continued. "If we do find an elevated risk for development of ALS, the finding will have broad implications for veterans, VA and the DoD alike. This major national study among a relatively young group of veterans could also provide new knowledge about the epidemiology of this rare disease and shed light on possible causes of ALS."

In an earlier study, DoD and VA researchers identified 28 people with possible ALS among the 697,000 service members who deployed to the Gulf. A preliminary study of those cases and a review of a national mortality study did not show a substantial increase in the rate of ALS among Gulf War veterans and no excess deaths from ALS. Researchers did, however, find that the typical onset of ALS symptoms in Gulf War veterans happened earlier than at the average age of 55 seen in the general population. The military population is clearly younger than the general population, though. Kilpatrick said that in the general population the youngest person ever known to contract ALS was 19, and the oldest was in the 90s.

Additionally, after reviewing the records from the Defense Department's physical evaluation board, researchers determined that from January 1990 through 1998, 66 servicemembers were identified with ALS out of the total active-duty force. Of those 66, 16 had served in the Gulf War and 50 had not. During the Gulf War, approximately one third of the force deployed, and 16 is less than one-third of the cases identified.

"So, from the epidemiology standpoint, there did not seem to be an increase in ALS in deployed compared to non-deployed personnel," said Kilpatrick.

The VA also conducted a six-month study and found 28 cases of ALS in Gulf War veterans. "Clearly, 28 is not all the cases of ALS that the VA is providing care for in their system, so there's more information to come," Kilpatrick said. "That awareness raised the question, 'Is this the normal number, or is it higher than we should expect?'"

To find that answer, the VA, together with the ALS Association of America, decided to conduct the current study. The study, which will be directed by the Epidemiological Research and Information Center at the Durham VA Medical Center in North Carolina, is a collaboration involving VA, DoD and HHS. The ALS Association of America will advise the study leaders.

Veterans who have been diagnosed with ALS and who were on active duty between Aug. 2, 1990 and July 31, 1991, regardless of whether they actually served in the Gulf War, are encouraged to participate in the study. The survey group includes active-duty military personnel and National Guard or Reserve personnel who were on active duty during that period. Veterans or family and friends of veterans who are deceased or otherwise unable to contact VA may call toll free (877) 342-5257 to participate.

Eligible veterans will be asked to take part in an in-home interview, during which a research nurse will ask questions about experiences on active duty to identify possible factors in the development of their illness. Genetic factors also will be examined. Although the study will not test new treatments, participants will receive a medical examination by a doctor with expertise in diagnosing and treating ALS and other motor neuron disorders.

Kilpatrick said much of the previous research on ALS has concentrated on studying "clusters." A cluster is where a few people closely connected in some other way came down with the disease. Researchers try to determine whether they might have had exposures in common that made them sick.

"Not knowing what to look for makes it impossible to say yes or no. And so we've not been able to gain any insight from looking at clusters," said Kilpatrick. "The current study may give us a bigger picture for understanding causes and potential causes rather than looking at groups of people with ALS. But looking at all the people will give us a much better picture of commonalties in exposures that may then give an insight through research."

Additional information is available from ALS Association's information web site at Veterans with questions about general VA services for Gulf War veterans may contact the VA's Gulf War Helpline at (800) 749-8387.