It’s not up for debate: ALS is a veterans’ disease, and one we need to take seriously. Veterans are up to 10 times more likely to develop amyotrophic lateral sclerosis (ALS) compared to the civilian population, according to AMSUS, The Society of Federal Health Professionals, in an October 2019 report.
This fast-moving disease is currently 100% fatal, progressively degenerative, and comes with an average lifespan of two to five years from diagnosis. As a result, ALS has a huge impact on veterans and their family members, who quickly become caregivers as the disease progresses.
[TAKE ACTION TODAY: Ask Your Lawmakers to Support the Justice for ALS Veterans Act of 2021]
And while legislation recently passed to provide more funds into research and treatment of ALS, the unique needs of these family caregivers are not getting enough attention. Like any military spouse, the spouses of veterans with ALS have sacrificed much for our country. When they become caregivers because of the onset of ALS, they sacrifice even more.
That’s why it surprised me to learn that while we provide compensation to spouses of veterans who die from a disabling, service-connected condition, the spouses of veterans who die from ALS are usually not eligible for the entire compensation. The reason? The current policy allowing a $305 monthly increase in Dependency and Indemnity Compensation (DIC) for surviving spouses is only available when the veteran lives for eight or more years with their disabling disease.
Is it the fault of these ALS caregiver spouses that ALS moves so quickly and most people diagnosed with the disease are gone in five years or less? This is our issue, and one we need to confront head on.
I recently had the opportunity to speak with MOAA members who are facing the daily challenges of this dreaded disease. They are losing neurological and muscular functions, and over time losing the ability to breathe or talk. Interestingly, ALS does not affect mental functions, but it progressively robs people of their abilities to walk, use their hands and arms, speak, and ultimately breathe. The individuals want to stay in the fight, they want to find solutions, and they certainly are passionate about research and breakthrough therapies.
[RELATED: MOAA.org/Caregiver]
But these veterans also care deeply about their spouses, who often must leave their jobs to care for them as their ALS progresses. Caring for a person with ALS is not for the faint of heart; over time, it encompasses everything about the person’s daily life, from eating to communicating to bathing to breathing. These veterans deserve to know that their service-connected illness – ALS – will be treated with the serious illness it deserves, and that their spouses will not be penalized simply because of the unique nature of the disease.
We can honor the service and sacrifice of these surviving spouses by securing the increased rate of DIC regardless of how long the veteran had the disease prior to death.
A bill now in Congress, the Justice for ALS Veterans Act (H.R. 5607 | S. 3483), would do just that. The bipartisan legislation would rectify this glaring imbalance by ensuring we have the backs of the surviving spouses of veterans who die from ALS. It would make all surviving spouses whose servicemember died as a result of ALS eligible for the DIC increase of $305 regardless of how long they lived with the condition.
Ask your lawmakers to co-sponsor this bill today by visiting MOAA’s new Legislative Action Center. Follow MOAA.org and The MOAA Newsletter for updates on this and other advocacy issues.
