VA ECHCS Earns Designation as ALS Treatment Center of Excellence

According to the Mayo Clinic, ALS, also known as Lou Gehrig’s Disease, so named for the famous early, 20th century baseball player, is a disease of the nervous system, that leads to the weakness of muscles and other symptoms. About 30,000 people in the U.S. are living with ALS and approximately 5,000 to 6,000 people are diagnosed each year. Eventually, those affected by ALS succumb to its effects and pass away. This is especially important as veterans are twice as likely to develop ALS as the civilian population.

“ALS is actually quite a rare disease,” said Lauren Holiway, VA ECHCS ALS coordinator and registered nurse. “The statistics show that veterans, and not just those in the U.S. but from around the world, have twice the likelihood of the general civilian population of being diagnosed with ALS.”

As such, VA has recognized ALS as a service-connected disease, and so the department provides financial and medical support to veterans who have at least 90 continuous days of active duty, along with partnering with the ALS Association.

This partnership combines VA’s resources and knowledge with those of the ALS Association; together the partners help to bring more services to veterans with ALS.

The ALS Association was established in 1985 and is the largest philanthropic funder of ALS research in the world. The association funds global research collaborations, assists people with ALS and their families through a nationwide network of care and certified clinical care centers. 

The Certified Center Program was instituted in 1989. Certified Treatment Centers of Excellence must meet established program requirements based on American Academy of Neurology Standards, complete the program’s robust clinical and administrative reviews and be involved in ALS-specific, IRB approved research to earn their designation.

This designation assures people living with ALS and their families that these centers offer the highest quality of evidence-based care and services.

“This shows that our clinic provides a-list care at the highest level, and that includes access to collaborative and customized, multidisciplinary team care,” said Holiway. “It highlights the incredible work that our ALS team, within the Spinal Cord Injury and Disorder Center, is doing every day. It also shows our veterans that the services we provide here for ALS care at the VA meet the highest standards for both community and VA facilities.” 

The VA RMR VAMC ALS team consists of nine individuals, comprising multiple disciplines (neuro-musculature, neurology, pulmonology, respiratory therapist, occupational and physical therapy, dietician, speech pathology, psychology, social worker and case manager) to address the needs of those veterans affected by ALS. Having so many members with different disciplines was also essential to the designation, as part of the review process was demonstrating how well the team could communicate with one another while caring for veterans.

“We have a very specialized, highly trained, highly experienced, multidisciplinary care team, and not every VA (System) has that,” said Holiway. “All though, all VA systems are mandated to provide access to ALS care, whether that’s via community care or if it’s internal, and we’re so fortunate that we have such an incredible team here. We do frequently have veterans who come to us after receiving care in the community for ALS, but I have never once had someone go back to the community after meeting our team, and I think that speaks volumes. And I have about seven years of data on that.”

The diagnosis of ALS is significantly life-altering. Over time, as the disease worsens, starting at the body’s extremities and moving inward, it becomes more difficult for those affected to chew, breathe or speak. Those affected find themselves requiring help to perform everyday tasks they could once perform themselves. 

“It’s an overwhelming diagnosis,” said Holiway. “Veterans can be afraid of what’s next, and I get to be their primary point person, getting them access to primary care, working with our incredible team, who take over and work in getting them access to equipment and caregiver support and services. So, in a nutshell, our multidisciplinary team does a great job in ensuring that we follow the ALS Association’s recommendations, which is to make ALS as livable as possible, because, unfortunately, we know ALS is a terminal disease.”

Though the disease is terminal, VA ECHCS’ ALS team does everything it can to ensure veterans are still able to have some sense of purpose and life throughout their diagnosis.

“Our team prides itself on our abilities to help veterans remain as active as they can and that’s through the use of personalized ALS care,” said Holiway. “We custom fit whatever they need. We also have access to cutting-edge equipment and tools to promote independence and comfort. We do all this while remaining aware of what the veteran’s specific goals are for their healthcare. We work very closely with the VA palliative Care to determine that. Of course, it’s difficult because we know what the outcome is eventually, but we get to really help veterans to live their lives to the fullest before that eventuality. And we get to support caregivers and family members through this, too. It’s a difficult job at times, but I’m so glad we have such a wonderful team here that gets to help these veterans and their families.” 

With VA ECHCS’ ALS team earning this designation, VA continues to be at the forefront of ensuring veterans, their families and caregivers are given the tools, help and care they need to ensure veterans are getting the best quality care they need and have earned. 

If veterans have any questions about receiving care for their ALS at VA ECHCS, they can contact Holiway directly at lauren.holiway@va.gov or visit VA ECHCS’ALS webpage to learn more about ALS treatment, other resources and information.