A bipartisan bill was recently introduced in Congress to discover why military veterans are disproportionately diagnosed with Amyotrophic Lateral Sclerosis (ALS).
The “Veterans with ALS Reporting Act,” introduced by U.S. Representative Jason Crow (D-CO), would require the Department of Veterans Affairs to study the prevalence of ALS within the military and veteran community and create a strategy to improve access to clinical trials for veterans with the condition.
“I went to war three times for this country, and throughout my time in Congress, I have worked hard to ensure my fellow veterans are equipped to transition to civilian life,” said Crow, a former Army Ranger. “Challenges still remain, but our veterans simply can’t wait any longer for the help they need.”
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, speak, and eventually breathe. The disease is always fatal, usually within five years of the diagnosis, according to the ALS Association. Currently, few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression.
While the cause of ALS is unknown, veterans are twice as likely to be diagnosed with ALS than civilians. A recent study revealed that among deployed post-Sept. 11 veterans, the prevalence of ALS is 19.7 per 100,000 veterans, which is more than 3.7 times the prevalence of ALS in the U.S. population over a similar time period. Most people with ALS only live another two to five years after their diagnosis.
The ALS Association, which is the largest ALS organization in the world, partnered with Crow and other veteran service organizations to shape the bill in hopes of getting it passed.
“As a veteran and a dad, I want my son to grow up knowing that his country takes care of the people who serve it,” said Jessy Ybarra, member of the Board of Trustees for the ALS Association and a veteran living with ALS. “I live with ALS every day, and I’ve seen too many fellow veterans face this same disease without answers. This bill gives me hope – not just for me, but for the next generation.”
If approved, the legislation specifically will:
•Provide critical data on the impact of ALS within military and veteran populations.
•Identify risk-reduction strategies to protect future generations of service members.
•Improve access to clinical trials and care for veterans living with ALS.
•Deliver a clear plan of action to reduce the incidence of ALS among those who have served.
“Our veterans answered the call, and it’s our duty to answer theirs. For years, veterans have faced an elevated risk of developing ALS – and now we must work to understand why," said Crow. "That’s why I’m introducing the bipartisan Veterans with ALS Reporting Act, which will help uncover critical data, drive prevention, and improve care for veterans already living with the condition. This bill will help deliver our veterans the world-class care they earned and take real steps toward protecting future generations of service members.”