My novel Silent Survivor is a work of fiction but the issue of the link between the neurodegenerative disease known as ALS and military service which is one of the plot points is based on reality. The search for a cure remains elusive with only a few medications that slow the disease progression.
In terms of cause, a small number of patients show a hereditary link, but the majority don’t.
What is known is that people who served in the military are as much as twice as likely as the general population to die of ALS. Moreover, this increased risk occurs regardless of military branch and whether a veteran served during war or peacetime. The association holds true for other countries including Canada.
One of the possible culprits may be a drug developed by the Army to prevent malaria. There is evidence that this indeed might be a factor. In Silent Survivor I explored this possibility using a fictional drug created by a rogue PsyOps group.
Although for many years the government refused to accept any of the evidence that their drug might be a culprit, in 2008 there was finally official recognition that ALS is a service-connected illness. As a result, the US Department of Veteran Affairs now cover 100% of treatment for veterans with ALS who served 90 days or more.
15 years later, there is still widespread lack of awareness about the relationship between serving in the military and ALS. And even with care covered there is a need for expanding access to VA home and community services. To that end, this past July the Elizabeth Dole Home Care Act was passed.
The biggest need is caregivers as most people with ALS ultimately become ventilator-dependent. According to the ALS Association, caregivers whether family members or professionals spend more than 30 hours a week providing care and at least half feel unprepared as the disease progresses.
In my state of Florida there are no community nursing homes at all for ventilator- dependent veterans which is a huge problem.
Bottom line: ALS is among the only specific diseases that occurs at a higher rate in all veterans, regardless of their era of service. So, today while we thank all veterans for their service, for those with ALS appreciate the need for improvement in nursing home care and urge Congress to support the heroes by funding more research to determine the exact cause with the goal of better treatment and prevention .