May is ALS Awareness Month: Paralyzed Veterans of America Continues its Advocacy and Assistance for Veterans With ALS
ALS Awareness Month, observed in May, is a time to recognize the positive work Paralyzed Veterans of America is doing to secure benefits and treatment for veterans with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
“ALS progresses so fast and it’s such a short time that a person with the disease can live,” said Lana McKenzie, associate executive director of medical services at Paralyzed Veterans of America. “This is one of the most challenging diseases for researchers to find a treatment or cure.”
ALS causes degeneration of nerve cells in the brain and spinal cord that leads to muscle weakness, muscle atrophy and spontaneous muscle activity. The cause of ALS is not known, and with no effective treatment, the disease is often fatal within three to five years of diagnosis.
In 2008, the Veterans Administration began recognizing ALS as a presumptively compensable illness for all veterans with 90 days or more of continuous active service in the military. The VA in 2012 also raised the disability rating for those with the disease to an automatic 100 percent.
A 2006 report by the National Academy of Sciences’ Institute of Medicine found an association between active duty service and ALS. The report, which analyzed numerous studies on ALS, concluded that military veterans within the past century are nearly twice as likely to develop the disease as those with no military history.
Regardless of membership status, Paralyzed Veterans’ Veterans Benefits Department’s mission is helping those with catastrophic disabilities such as ALS apply for benefits. “We train our service officers to look out for these kinds of claims because we know this disease progresses so quickly,” McKenzie said.
Paralyzed Veterans also hosts conferences and training sessions for clinicians who may not fully understand ALS, and also provides grants to clinicians who handle ALS veteran patients. Paralyzed Veterans also hosts an event called “The Summit” that brings clinicians who handle ALS patients together to share best practices and knowledge within their field, McKenzie said.
ALS poses a particular challenge among the veteran population, as no one can pin down what causes it, or why veterans are more likely to get it, McKenzie said. Unlike other diagnoses common among the veteran population that have a clearer cause and thus better prevention, like spinal cord injuries, ALS cannot necessarily be prevented because it has no clear etiology. The disease is also so relentlessly progressive that researchers do not have enough time to follow and research the disease before it leads to death, McKenzie added.
“We hope that as time goes by we can prolong life long enough to find a cure and proper treatment,” McKenzie said. “Right now, when someone is diagnosed with ALS, we try to prolong life and ensure that the time they have with us is quality and that they have the proper equipment to make it easier for them and their family. There’s a lot we’d like to do with this disease, but time is playing us.”
Brittany Ballenstedt is a freelance journalist whose work has appeared in several publications, including Government Executive, National Journal, Technology Daily and NextGov.com.