The Department of Veterans Affairs recognizes ALS as a disease that is connected to military service and provides a 100% disability rating for veterans diagnosed with the condition. Each VA hospital has an ALS coordinator who connects patients with a medical team and resources.
Studies have shown that U.S. veterans are 1.5 times more likely to get ALS compared with people who never served in the military, the VA said.
“For years, veterans have faced an elevated risk of developing ALS, and now we must work to understand why,” said Crow, who developed the legislation with assistance from the ALS Association, an advocacy group, and veterans service organizations.
The new legislation directs the VA, in partnership with the Centers for Disease Control and Prevention, to prioritize research into the prevalence of ALS among veterans.
Potential risks from military service could include exposures to heavy metals, pesticides and exhaust fumes; the effects of blasts and explosions; and traumatic brain injuries, according to the National Institutes of Health.
The bill also would make it easier for veterans with ALS to participate in clinical trials testing new treatments.
“I live with ALS every day, and I’ve seen too many fellow veterans face this same disease without answers,” said Air Force veteran Jessy Ybarra of California, a board member of the ALS Association.
Ybarra, a former munitions systems specialist who served from 1983 to 1987, was diagnosed with ALS in 2017, after seeking medical help for fatigue and weakness in one arm. He spoke at a congressional hearing in March against research funding cuts to the National Institutes of Health by the Trump administration.
ALS affects nerve cells in the brain and spinal cord that control movement. Individuals with ALS develop muscle weakness and lose the ability to move, eat, talk and eventually breathe without assistance as the disease progresses.
Early detection, expert clinical care and understanding how best to manage symptoms can improve the quality of life for individuals with ALS, according to Paralyzed Veterans of America.
Paralyzed Veterans of America has represented more than 12,000 veterans with ALS since 2008 seeking VA benefits and services. The VA operates more than two dozen centers that provide specialized care for patients with spinal cord injury and disorders, including ALS.
The Food and Drug Administration has approved drugs to address ALS symptoms. Some of the drugs are designed to slow down the disease.
ALS is considered a rare disease with about 5,000 new cases each year, according to the CDC.
Rep. Ken Calvert, R.-Calif.; Rep. Terri Sewell, D.-Ala.; and Rep. Brian Fitzpatrick, R.-Pa., are co-sponsors of the bill, which was referred to the House Veterans’ Affairs Committee.
The goals of the legislation are to improve the collection and analysis of ALS data on patients, identify “risk-reduction strategies” for prevention, and improve care for veterans with ALS.
The ALS Association described the bill as “a critical step toward uncovering why those who serve our nation face a far greater risk of developing ALS.”
Crow and the bill’s co-sponsors are members of the ALS congressional caucus in the House. The caucus, which has more than 40 members, advocates for policies and legislation that support finding a cure for ALS.
“ALS is a disease that knows no stranger. In my own family, we lost our dear cousin Jeff to the disease, and studies show veterans of the Gulf War are twice as likely to develop ALS,” Crow said in 2019 when he announced the formation of the caucus.
“It is clear that more research needs to be done to fully understand this vicious disease,” Crow said.
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