Suffering From ALS?

All veterans suffering from ALS are eligible for benefits, but most don’t know it.

By health and science writer, Kathlyn Stone

Kathlyn StoneScientific evidence linking military service with ALS (amyotrophic lateral sclerosis – also known as Lou Gehrig’s disease) is too strong to ignore. Many veterans with ALS and researchers point fingers at the military’s experimental and mandatory vaccines as the reason ALS occurs between one-and-a-half to twice as often in veterans than non-veterans.

In late 2008, the U.S. Department of Veterans Affairs published new regulations granting military veterans diagnosed with ALS, access to health and disability benefits – yet many veterans who have been diagnosed with ALS are not aware of the benefits – or have to fight like hell to get them.

What is ALS? Click here to find out.

The rule went into effect immediately, and covers all veterans serving at least 90 consecutive days, no matter where or when they served, with one large caveat. “The presumption of service connection for ALS does not apply if there is affirmative evidence that ALS was not incurred during or aggravated by service in the military or affirmative evidence that ALS was caused by the veteran’s own willful misconduct,” according to the regulation.

Citing the high incidence of ALS among Gulf War veterans who were diagnosed with the disease at younger ages than had been typical, the VA initially granted service-connected benefits only to veterans of the 1990-91 war. Advocacy groups, including the ALS Association, and some members of the military and Congress, continued to push to designate ALS as a presumption of service connection, and to expand benefits for all war veterans.

The VA cited a compilation of medical studies, “Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature,” released in November, 2006, which concluded that “there is limited and suggestive evidence of an associa­tion between military service and later development of ALS.”  The report, completed by the National Academies of Science at the behest of the VA, found military veterans within the last century are nearly twice as likely to develop ALS as those with no history of military service, regardless of where or when they served in the military.

“Veterans are developing ALS in rates higher than the general population, and it was appropriate to take action,” former VA Secretary James Peake had said in a written statement. “ALS is a disease that progresses rapidly, once it is diagnosed.  There simply isn’t time to develop the evidence needed to support compensation claims before many veterans become seriously ill. My decision will make those claims much easier to process, and for them and their families to receive the compensation they have earned through their service to our nation.”

The VA said it will try to identify and contact veterans with ALS, including those whose claims were previously denied. 

Reasons still unclear 

Why ALS occurs more often in veterans is unclear, but anthrax vaccine may play a role. Bob Evans, a reporter with the Daily Press in Newport News, Virginia, wrote about the anthrax vaccine-ALS connection a couple years ago, in articles about two Navy officers Denis Army and Brody Prieto, who were hit by ALS soon after receiving the anthrax vaccine.

Evans wrote, “Both died thinking that their anthrax shots triggered – or caused – this always-fatal illness, despite military doctors’ refusal to consider the possibility, their widows say.”

Squalene “enhancement”

Also, both veterans received their shots from vaccine batches containing squalene, which, while boosting the potency of vaccines, caused symptoms consistent with “Gulf War Syndrome,” according to a 2002 study. Squalene is also known to cause severe autoimmune problems in laboratory animals. The Army experimented with vaccines containing squalene for 50 years, Evans found.

Todd Sanders of Kingsport, Tennessee, told a reporter last year that he and his friend, who were both among the nearly 2 million Gulf War soldiers to receive the anthrax vaccine, believed their illness was caused by the vaccine. “Sanders said he believes – and that Robertson believed – their condition was caused by the anthrax vaccine, which made him sick and almost caused him to pass out when he first received it,” wrote Rick Wagner.

Other studies have looked at the possible role of genetics, physical activity, environmental toxins, trauma, chemical and alcohol use, or a combination of these factors, to explain the high incidence of ALS in military veterans. Aside from determining that 5 to 10 percent of ALS cases are inherited, these study results have been, for the most part, inconclusive.

National ALS Registries

The VA discontinued the National Registration of Veterans with ALS in September 2007. Between 2003 and 2007 the registry collected data, including DNA samples to be made available for ALS research, from 2,090 ALS patients or their survivors. However, a national ALS registry bill was signed into law the following year. The registry is maintained by the Centers for Disease Control and Prevention. The law requires that an advisory board for the registry include at least one member from the VA, and that the CDC share and “coordinate with” state, local, and federal registries, including the VA.

Chris Simon

Chris Simon

Chris Simon, a 60-year-old Vietnam veteran living in Ceres, California, faced several hurdles before receiving an offi­cial ALS diagnosis last fall. He had seen two different neurologists and had undergone countless tests before being diagnosed. He says it was like pulling teeth to get a signature on paper before he could file the VA claim for ALS-related benefits. Medical staff wrote that test results were “consistent with ALS,” but that wasn’t good enough to file a claim. Simon found a VA neurologist with experience in ALS who came through with a definitive diagnosis. Weeks later he received word that he would receive a 60 percent disability rating and some medical assistance throughout his medical journey.

“I’m hoping to get to a 100 percent rating before I’m dead. That will increase my monthly funds from the VA, and give additional benefits for my daughter and wife – I think. I’m learning. I’ll also add some routines to my daily activity to maximize my health opportunities and strength.”

Chris has good days and bad days. Sometimes he picks up the phone to answer it, and he can’t make a sound. Some days he’s more tired than usual. But to hear him tell it, most days are good ones.

“My heart is full of thankfulness for the many people who have assisted me through medical examinations and tests to finally figure out what is going on with me. I’m appreciative for those who have processed my paperwork so quickly and helped me receive SSD, state disability, and now VA benefits to minimize my family’s financial concerns.

“I’ll find a way also to encourage others who have end-of-life prospects, and who may struggle with all the impacts of ALS.

Writer Kathlyn Stone specializes in health and science news and trends. She writes for physician publications specializing in neurology, oncology, and radiology.


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