Don’t surrender veterans to ALS
Throughout American history, men and women enlisting in our military have raised their right hands to speak the oath, promising to stand with our brethren during times of conflict and peace. We sacrifice family, holidays, our bodies and often our lives, all for love of country. What an irony, then, that it’s our service that causes so many veterans to develop ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, a progressive, fatal neurodegenerative disease that will rob us of the ability to use our arms and legs, speak and, eventually, to breathe on our own. Veterans are at least two times more likely to contract this disease, and since 9/11, we have lost three times more veterans to ALS than to our conflicts in Iraq and Afghanistan combined.
As an Air Force medic for 21 years, I was dedicated to caring for those who serve and their families. I have had the privilege to care for not just active-duty personnel but veterans of both world wars, Vietnam, Korea and even several Tuskegee Airmen. My greatest honor was transporting the remains of fallen service personnel.
As a veteran with ALS, I am looking to Congress to deliver the arsenal we need to save our own lives. When we are in combat, we are trained to find ways to overcome the obstacles in front of us. That’s the approach we need for ALS, which is a death sentence. For the first time in the 150-year history of ALS research, there are drugs in clinical trials showing real results. But the average life expectancy with an ALS diagnosis is two to five years, and the normal process to get these drugs fully approved will take longer than the time we have left. We need a new approach.
ALS is a mortal wound we veterans received during our service. A bill now in Congress, ACT for ALS, would open new pathways for the Food and Drug Administration to get promising treatments to us faster, while using our experiences with these new drugs to contribute to ALS research. We deserve this chance. This bill would also create new infrastructure not just for ALS but for a range of neurodegenerative diseases.
Compare this proactive approach to the current treatment for ALS patients, which is palliative. If I
may be blunt, this simply means go home and die. It also means that the Veterans Administration spends at least $290 million a year to help us die out of sight.
To a military veteran, this is unacceptable. We were not trained to surrender, nor to leave wounded soldiers behind. With ALS, we are once again in a fight for our lives, engaged in combat with our own bodies — and with a system that moves too slowly to give us access to treatments that could change our lives. What would our nation say if its service members were deployed to combat without the right weapons for the enemy at hand? It feels like we’re being sent outside the wire without the coordinates to the target or the necessary weapons to execute the mission.
ACT for ALS has more bipartisan sponsors in the U.S. House of Representatives than any bill filed this year, including from Texan and combat veteran Rep. Dan Crenshaw, and it passed the House last week, although Rep. Chip Roy, R-san Antonio, was one of three lawmakers to vote against it. In the Senate, new co-sponsors are joining every week from across the political spectrum. Now, we need our Texas senators to step forward and fulfill their promise to our veterans. It’s time to honor our oath and give us the weapons we need to fight this deadly enemy. It’s time to ACT for ALS.
Juan A. Reyes is a retired Air Force medic and former executive director for the San Antonio command of the Salvation Army. He and his wife, Meg, are raising four children, biological and adopted, in San Antonio. He was diagnosed with ALS in 2015.