Veterans with ALS need Congress in the fight

“Veterans are developing ALS in rates higher than the general population.”

— VA Secretary Dr. James Peake, 2008.

Since 1910, multiple studies have shown that the rate at which U.S. veterans develop amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is twice as high as the American general population. Despite this, there’s a surprisingly low amount of awareness of the disease among the veteran community.

I should know. I was diagnosed with ALS in November 2020.

Every day in America, three veterans are diagnosed with ALS while another three die from it. The prognosis for a person diagnosed with ALS today is largely the same as it was 150 years ago — death in two to five years.

Towards the end, you are left almost incapable of communicating with the outside world except through your eyes.

I am a retired Marine and have been athletic all my life. I played soccer, rugby and ice hockey. I ran marathons and at the age of 60 was still bench pressing 300 pounds. Now I live in a wheelchair, barely able to lift a spoon to my mouth.

In 2008, the Veterans Administration determined that military service is a presumptive causation of ALS for veterans. As veterans continue to reach the ages commonly associated with ALS, the rate of the disease will continue to increase in this population. I am evidence of that.

Since 9/11, we have lost more veterans to ALS than troops to combat in Iraq and Afghanistan combined (7,315 versus 6,896). Interestingly, the Hampton Roads area — home to 234,477 veterans — is a hot spot for ALS. We don’t know why those in uniform bear an outsized burden from this disease.

ALS is designated as a rare disease not because so few people get it, but because ALS kills so quickly. As many as 30,000 Americans — approximately 5,000 of them veterans — have ALS, with 5,000 new cases diagnosed each year. However, if ALS patients lived 10 years after diagnosis there would be 275,000 nationwide, a much more noticeable population.

An experimental drug called NurOwn has slowed or even reversed ALS in 35% of trial participants. But the FDA denied approval because it was not effective in all participants.

For someone living with a 100% fatal disease, denying a 35% chance at life is incomprehensible. The FDA’s inflexible standards deprive veterans’ time with their families and possibly even their lives.

Some 60% of Americans don’t know that ALS is always fatal. If you know of a veteran who has or had ALS, we need you in this fight. Too often ALS exists in the shadows, and those afflicted pass so quickly they can’t speak for themselves. Be their voice.

The veterans’ community urgently needs new ALS therapies for people with ALS. The “Accelerating Access to Critical Therapies for ALS Act” has been introduced to the 117th Congress as House Resolution 3537 (HR3537) and Senate Resolution 1813 (S1813).

The ALS Act will fund early access to ALS investigational therapies, accelerate therapy development, and increase research on and development of interventions. But it needs more co-sponsors in the Congress. I have already called both Sens. Tim Kaine and Mark Warner. Please do the same.

I call upon Congress to pass the

ALS Act. We can solve urgent health needs when we put our minds to it. The quick vaccine development during the pandemic proves that.

Our nation must take all measures to ensure that our military men and women are at no greater risk of ALS than any other Americans.

Before I was diagnosed, I had no idea that ALS so disproportionately affects veterans. I have made it my personal mission to raise the awareness in the veteran community of the severity of ALS amongst us.

And I will fight this battle to my dying breath.