Military Service Linked With Higher Rates of Neurogenerative Disease
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurogenerative disease that has devastating symptoms. It is 1.5 times more common in military veterans than those who never served. A recent survey found that veterans with the disease gave high marks to VA’s highly comprehensive and coordinated system to manage their care.
Ileana Howard, MD, associate director of neurology for ALS at VHA
SEATTLE — Amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that attacks the nerve cells in the brain and spinal cord, affects military veterans at a higher rate than the general population.
A new study published in Muscle & Nerve aimed to assess symptom burden and satisfaction with ALS care among individuals who are enrolled in the VA, and the researchers found that self-reported outcomes, including treatment, education and satisfaction, were better for veterans receiving care exclusively within the VA compared to those receiving care at both VA and non-VA facilities or receiving care exclusively at non-VA facilities.1
ALS, which results in loss of mobility, speech, swallowing and breathing, has been identified as a significant health concern for veterans based on a 2006 VA‑commissioned review called “Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature” that concluded that veterans have a higher risk of ALS than the general population, Ileana Howard, MD, associate director of neurology for ALS at VHA, told U.S. Medicine.
U.S. veterans are about 1.5 times more likely to get ALS compared to individuals who never served in the military. Starting in 2008, U.S. veterans who were diagnosed with ALS were extended comprehensive medical and disability benefits through the VA. All veterans with ALS who served at least 90 days of active duty and were honorably discharged are eligible for 100% presumptive service connection.
Why veterans are more likely be diagnosed with ALS remains a mystery, although known factors are that the disease primarily affects individuals between 60 and 80 years old, with higher frequency in men. It also appears to be more predominant in smokers; veterans are as much as 1.5 times more likely to smoke than nonveterans, according to past studies. Other theories include environmental exposure to toxins, pesticides, heavy metals and chemicals—such as those from burn pits in the Gulf War—is a primary suspected factor.
Other possible causes that have been studied include repeated head, neck or spine injuries, including traumatic brain injuries (TBI), intense physical activity and stress during service that might act as triggers and potential exposure to viruses or bacteria during deployment.
Whatever the causes, providing comprehensive care for ALS patients is notoriously difficult. Previous survey-based studies of ALS patients have found a high prevalence of symptoms and a high prevalence of untreated symptoms. No prior studies have specifically examined veteran status as it relates to these symptoms, however.
One way in which the VA is improving care is through the recently passed Elizabeth Dole Act, which expands in-home support, explained Howard, a physiatrist and professor in the Department of Rehabilitation Medicine at University of Washington Medical and medical co-director of the ALS Center of Excellence at the VA Puget Sound Healthcare System, both in Seattle.
The current research focused on understanding symptom burden and care experiences among veterans already diagnosed with ALS. The study team conducted the analysis because the ALS veteran advocacy community holds the VA accountable and reminds them the VA’s work starts and ends with veterans, Howard pointed out.
“They introduced us to the Morris ALS Principles, a document created by people with lived experience to outline expectations for how the health care and scientific communities should engage and ensure work is based on the needs and preferences of this community,” she said.
For the study, the researchers created a custom online survey with questions about symptom prevalence and management as well as care satisfaction. Then, a survey link was emailed to all veterans with an ICD-10 diagnosis of ALS in the VA if an email address was available in the electronic health record. The researchers received responses from 413 participants receiving VA and non‑VA care, a 16% response rate.
Overall, the survey found that veterans with ALS receive comprehensive symptom-based care within the national VA healthcare system and report high levels of satisfaction. Compared to previous surveys of U.S. patients with ALS, respondents reported high care satisfaction and higher prevalence of treatment of symptoms. Self-reported outcomes, including treatment, education and satisfaction, were better for veterans receiving care exclusively within the VA compared to those receiving care at both VA and non-VA facilities or receiving care exclusively at non-VA facilities, study authors reported.
“This study reinforces the findings of the 2024 National Academies report “Living With ALS,” which states, ‘VA is a bright spot in the landscape of ALS care,’” Howard said. “It highlights the value of highly interdisciplinary and integrated care delivered within our federal health care system. While we are always working to improve, I am proud of the unique and important work we are doing to support veterans and caregivers through this journey.”
“VA is a mission‑driven organization, and veterans in the ALS clinic I work at often tell me they notice this difference when they transfer from private‑sector care,” she added. “Our VA model of ALS care is unique as it is highly integrated, proactive, anticipatory and built within a rehabilitative framework. We strive to provide holistic, person‑centered care and equipment to veterans and caregivers and to make sure they have what they need even before they realize they need it.”
ALS, often called Lou Gehrig’s disease for the professional baseball Hall of Famer who had it, is a progressive neurodegenerative disease that destroys motor neurons in the brain and spinal cord. Ultimately, it causes fatal muscle weakness, paralysis and respiratory failure. Early symptoms include muscle twitching, cramping, and general weakness, which worsen over time. While 90-95% of cases are sporadic not familial, the exact causes are unknown, although genetic, autoimmune and environmental factors are suspected.
The symptoms are extremely challenging as ALS attacks upper and lower motor neurons, resulting in loss of voluntary movement, including walking, speaking, eating and breathing. It usually spreads regionally from the onset site, advancing from mild, focal weakness to widespread paralysis and, eventually, respiratory failure. Life expectancy is usually 3-5 years after symptom onset.
While there is no cure for ALS, treatment is available to help manage symptoms, improve quality of life and prolong survival, including Food and Drug Administration-approved medications such as riluzole and edaravone. Riluzole, originally approved as Rilutek tablets in 1995, was the first FDA-approved medication for treating ALS in all patients. It acts as a glutamate inhibitor to slow disease progression and extend survival. In 2019, the FDA approved intravenous edaravone, marketed as Radicava, to slow the loss of physical function in ALS. As a neuroprotective agent, it acts as a free-radical scavenger to reduce oxidative stress. A more convenient oral version, Radicava ORS, was later approved in 2022 to treat adults with ALS, offering the same efficacy as the intravenous formulation in slowing disease progression.
A new study has suggested that edaravone could be beneficial to a wider range of patients with ALS than those included in the original trial, Study 19, which led to FDA approval.2
That report in Muscle & Nerve noted that Study 19 used a targeted enrollment enrichment strategy based on post hoc analyses from earlier trials, selecting patients with higher baseline function, more rapid disease progression, and better respiratory status. To evaluate the generalizability of Study 19 results, however, subsequent post hoc analyses assessed the efficacy of edaravone in broader ALS populations.
A machine learning‐based analysis that retrospectively applied a validated model to data in an earlier trial suggested that up to 70% of those participants may have benefited from edaravone. A second analysis investigated edaravone efficacy in patients from Study 19 with forced vital capacity (FVC) < 80% predicted (%p) at the start of treatment and found that both high‐ and low‐FVC subgroups demonstrated reduced ALS functional rating scale‐revised decline at 48 weeks when treated continuously with edaravone, according to the recent review.
“These findings support the potential benefit of edaravone in a wider range of patients with ALS than those enrolled in Study 19, providing important insights into how clinical trial enrichment strategies may influence perceived efficacy, and underscoring the need for future prospective studies in more diverse ALS populations,” the authors wrote.
No matter the pharmacological treatment used, the recent VA study on symptom burden and patients demonstrated that the VA’s approach to ALS care is highly comprehensive and coordinated. Veterans receiving care through VA interdisciplinary ALS clinics, especially Centers of Excellence and full team models, reported higher satisfaction and better support with symptom management. One reason, Howard suggested, is that VA’s proactive, team-based model helped ensure early access to services such as equipment, therapy and care coordination, which can make a meaningful difference in the ALS care experience
“These findings provide important baseline information to support ongoing quality improvement efforts across the VA system,” she advised.
The results might also serve as a model for similar efforts in other healthcare systems, the researchers recommended.
The survey identified several areas for further improvement, including education on genetic testing and research and management of non-motor symptoms. Howard noted her team is working with the VA’s Genomic Medicine Service and the National Precision Oncology Program to implement direct ordering of genetic tests in VA neurology clinics this year.
“To expand our future research capacity, we’re partnering with community organizations and the VA Office of Research and Development’s Brain Health Coordinating Center,” she explained. “We are also providing ongoing education to our clinical network on symptom‑management treatments and current research opportunities, including recent presentations from the VA Brain Bank, the ALL‑ALS consortium and the ALS Therapy Development Institute.”
The study authors also are affiliated with the Birmingham (AL) VAMC; University of Alabama at Birmingham in Birmingham, AL; Stanford University in Palo Alto, CA; VA Palo Alto (CA) Health Care System; Yale University in New Haven, CT; VA Connecticut Healthcare System in West Haven, CT; and Richard L. Roudebush VAMC in Indianapolis.
“I’d like to thank the veterans who shared their feedback through this survey,” Howard said. “I am continually humbled by the selfless service of the veteran ALS community, which clearly does not stop after diagnosis. With their help, we will keep working to improve care for those living with ALS now and for those who may be diagnosed in the future, until we have a cure.”
Veterans can find more information on benefits and clinical care at www.va.gov/health/als.asp.
- Howard I, Lyerly M, Reimer R, Patwa H, Darling L. Symptom Burden and Care Satisfaction in US Military Veterans With ALS: Results of a National Survey. Muscle Nerve. 2026 Apr;73(4):623-629. doi: 10.1002/mus.70147. Epub 2026 Jan 20. PMID: 41556400.
- Brooks BR, Ennist DL, Beaulieu D, Apple S. Generalizability of Edaravone Efficacy. Muscle Nerve. 2026 Feb;73 Suppl 1(Suppl 1):S16-S18. doi: 10.1002/mus.70042. Erratum in: Muscle Nerve. 2026 May;73(5):925. doi: 10.1002/mus.70197. PMID: 41653008; PMCID: PMC12882029.
