Military veterans are at a significantly higher risk of developing amyotrophic lateral sclerosis (ALS), with studies suggesting they are about one and a half to two times more likely to be diagnosed than the general population. Despite the significance of studying ALS in veterans, the veteran community faces several barriers when navigating care and research.
A partnership between Dr. James Orengo at Baylor College of Medicine, one of the newest sites in our Global Natural History Study, and the Michael E. DeBakey VA Medical Center (MEDVAMC) in Houston, Texas, plays a crucial role in investigating the reason behind this lesser known fact. Dr. James Orengo explains this collaboration brings together two distinct patient groups: those seen at the Baylor clinic and veterans treated at the MEDVAMC clinic. “This is one of the largest VA systems in the nation, serving a vast area beyond Houston, including parts of Texas and Louisiana,” he says. “Through this partnership, there are two independent groups of patients which the Baylor College of Medicine Neurologists serve, those that come to the BCM clinic and the veterans that come to the MEDVAMC clinic.”This partnership enables targeted research into how ALS affects veterans and provides a comprehensive approach to care.”
Unique Environmental Factors in the Veteran Population
One of the unique aspects of the veteran population is their exposure to environmental factors, such as lead, pesticides, and other hazardous materials, which could potentially contribute to the onset of ALS. Dr. Orengo notes, “Veterans have unique environmental exposures, including intense physical training and exposure to hazardous materials. It’s unclear how and if these environmental experiences contribute towards developing ALS, however, given the increased incidence of ALS in veterans compared to the general population, they serve as a unique population that may shed new light on the role of the environment towards developing ALS.” This insight is crucial for researchers working to understand the complex interactions between genetics, environmental triggers, and the development of the disease.
Challenges in Diagnosing and Treating ALS Among Veterans
Despite the significance of studying veterans, the veteran community faces several barriers in ALS research. Veterans may encounter challenges with receiving an ALS diagnosis when seeking care either inside or outside of the VA system. “The veteran community has a unique interface with medical care regarding ALS. On the one hand, they may struggle to have the diagnosis made within the VA system, sometimes leading to outside referrals and a lengthy process to arrive at a diagnosis,” Dr. Orengo shares. However, once a diagnosis is confirmed, veterans receive unparalleled access to resources, as ALS is considered a 100% service-connected condition. “Tremendous resources are available to the veteran, including financial support, access to the latest ALS therapies, caregiver support, and more,” Dr. Orengo adds, underscoring the differences in care between veterans and civilians with ALS.
Even with these benefits, access to ALS care can vary significantly between VA medical centers. The level of care a veteran receives often depends on the expertise available at their local VA. “Care for ALS across all the VAs is not necessarily consistent,” says Dr. Orengo. “When the local VA has ALS experts, ideally a multi-disciplinary team, then the sky’s the limit and no other non-VA clinic can compete in terms of the access to care the patient gets. However, if those experts are not available, there can be hiccups,” he continues. There is a critical need for standardized care across the VA system, a goal that Dr. Ileana Howard, Chief of VA ALS care, is actively working towards.
Baylor College of Medicine in Houston, TX, has taken on a pivotal role in advancing ALS research by officially joining the Target ALS Global Natural History Study, a groundbreaking effort aimed at uncovering new insights into this devastating disease. As part of the study, Baylor will collect essential biofluids like blood, urine, and cerebrospinal fluid (CSF), as well as speech, respiratory, and environmental data, all of which are critical to understanding how ALS progresses across diverse populations. Dr. Lydia Sharp, the lead Principal Investigator on the Target ALS Natural History Study at Baylor, highlights the significance of this partnership, noting that Baylor’s connection with the Michael E. DeBakey VA Medical Center and Harris Health System enables access to underrepresented groups, including veterans and Hispanic patients. “The demographics of patients served reflect our diverse community here in Houston, Texas. We anticipate recruiting participants from both the Houston VA and Harris Health,” says Dr. Sharp.
This collaboration plays a crucial role in identifying potential biomarkers and developing more targeted diagnostic tools and treatments for ALS, particularly for populations with unique environmental exposures. Veterans, who are at a higher risk of developing ALS, are central to this research. Baylor’s involvement ensures that their experiences, including exposure to hazardous materials and intense physical training, are thoroughly examined to better understand the connection between these factors and the disease.
Advocating for Comprehensive Care and Continued ALS Research
The veteran population offers a unique and valuable perspective in the fight against ALS, yet systemic barriers within the VA and underrepresentation in research must be addressed to maximize their contributions. As Dr. Orengo puts it, “Veterans are a unique population that may shed new light on the role of the environment towards developing ALS.” By advancing research within this group and advocating for consistent, high-quality care, we can move closer to a future where ALS is no longer a life-threatening diagnosis for anyone, veteran or civilian.
On this Veterans Day, we honor their service through Target ALS’ commitment to advancing ALS research that includes and supports veterans.
