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You Can Help Accelerate a Cure through ALS Research
By James Thompson, Associate Vice President of Content at American Military University
Since Stephen Hawking was diagnosed with amyotrophic lateral sclerosis (ALS) over 50 years ago at the age of 21 while in graduate school at Cambridge, one fact has remained constant: There is still no cure.
Despite the fact that most ALS patients die within two to five years of diagnosis, Hawking ultimately persevered to earn his Ph.D. and became a world-renowned mathematician, theoretical physicist, cosmologist and bestselling author many times over. His global influence earned him, among many accolades, the Presidential Medal of Freedom. His Einsteinian intellect was astounding considering he achieved his top accomplishments after losing nearly all of his major motor neuron functions.
Stephen Hawking was born one year after the New York Yankees’ famed captain Lou Gehrig succumbed to ALS in 1941. Hawking’s life spanned World War II, the Korean War, Vietnam, Gulf War, Iraq War and Afghanistan (i.e., the Global War on Terror). And he participated in the social media fundraising hit, ALS Ice Bucket Challenge in 2014 (by way of his family), which earned over $115 million in ALS research donations that year alone, according to the ALS Association. Hawking passed away in March 2018 at the age of 76.
The Not So Rare Disease
ALS has been well-chronicled as one of a collective of orphan diseases because of their rarity, affecting fewer than 200,000 people nationwide, according to the U.S. Food & Drug Administration. The financial resources needed to accelerate research and find a cure for ALS, along with other rare diseases such as cystic fibrosis, are naturally a greater challenge to prioritize, compared to large research funds used for fighting more common diseases. However, when orphan diseases are combined together, nearly 25 million Americans are affected, which represent a serious public health concern in the aggregate.
Today, The ALS Association estimates that approximately 6,000 people in the U.S. are diagnosed with this devastating and fatal disease annually (15 new cases daily), and more than 20,000 Americans are currently living with the condition.
In military circles, the rate at which service members were diagnosed with ALS seemed to be higher than among the civilian population, despite little information or tracking of incidence among those who served. It wasn’t until 2003 when the Department of Veterans Affairs (VA) created a national registry of ALS, now commonly known as Lou Gehrig’s disease, to “help recruit research participants,” according to the VA. All signs pointed to a noticeable spike in occurrences among veterans. However, due to the timing, the registry and subsequent research was mostly focused on Gulf War veterans.
Why Are More Members of the Military Affected?
There are many theories as to why military personnel are exhibiting a heightened level of sporadic ALS cases compared to civilian populations—everything from prolonged stress and physical exertion during tours to exposure to environmental toxins, in addition to genetic predispositions. Many of these theories have been closely examined over the years by scientific communities, which have yet to find the smoking gun.
Soon after the 1991 Persian Gulf War, significant populations of military personnel serving in and around the combat zones began reporting chronic health problems. These problems were originally considered outliers by the medical and military establishment, or they remained undiagnosed as to both their cause and treatment. In response to Iraq’s invasion of Kuwait in the fall of 1990, the U.S.-led coalition saw a buildup of nearly 700,000 American troops alone during Operations Desert Shield and Desert Storm. Of that population, Newsweek reported that the Department of Defense estimates as many as 200,000 Gulf War veterans have experienced complex symptoms covering a wide range of health issues related to unexplained causes and what the VA re-designated as Gulf War Illness.
U.S. Armed Forces Were Returning from Duty with Unexplained Multisymptom Illnesses
Widely known as Gulf War Syndrome at the time, U.S. Armed Forces were returning from duty with unexplained multisymptom illnesses ranging from chronic fatigue to gastrointestinal maladies, fibromyalgia, respiratory disorders, and neurological and psychological conditions, to name only a few. Due to the wide variety of conditions, the VA chooses today to use the umbrella term “chronic multisymptom illness” instead of Gulf War Syndrome.
While this classification was a source of debate reflecting initial skepticism among some law makers and federal agencies, the 27 years since the conflict started have yielded a sobering fact in lieu of isolating root causes. Active-duty personnel and veterans are showing substantially higher rates of life-changing neurological conditions, with ALS being diagnosed nearly twice as high as that of the general population.
Two primary studies and one secondary study found that deployed veterans appear to be at increased risk for ALS… [an] almost two-fold increase in the risk of ALS for the deployed Gulf War veterans compared with nondeployed.
—Gulf War and Health: Volume 10: Update of Health Effects of Serving in the Gulf War (Health and Medicine of the National Academy of Sciences, Engineering, and Medicine)
Veterans of All Generations whether in War or Peace
The advocacy by and for the troops who served in Gulf War, and the greater media attention paid to the numbers of veterans suffering from Gulf War related conditions, marked a cultural shift in how the military leadership, the VA, and lawmakers approached policies governing veterans benefits.
One reason for that shift in policies was that while early studies emphasized those who served in liberating Kuwait in the early ’90s, an underlying truth that many suspected for generations was coming to light. Follow-up research revealed that all veterans, independent of whether they deployed and served in battle, or in what battle they served, had a much higher risk for developing ALS than nonmilitary populations.
In fact, The ALS Association went on to report that based on research supported by the DoD, VA, National Institutes of Health, and Harvard University, all U.S. military veterans are almost twice as likely to die from ALS as members of the general population.
“Studies found that our military heroes were being diagnosed and dying from Lou Gehrig’s disease at an alarming high rate. They were returning home only to fight a new war and a new enemy—ALS. And it wasn’t just the Gulf War Veterans but anyone who served in the military from before World War II to the current conflicts in Iraq and Afghanistan, home or abroad, during a time of war or peace.”
The simple act of the federal government acknowledging a military health crisis first described as Gulf War Syndrome, and followed by the VA’s establishment of an ALS registry to track cases, helped to pave the way for critical legislation and health services that provide much-needed quality care that veterans of all generations deserve.
Veteran’s Affairs Policies Regarding ALS Patient Care
In 2008, the VA and leaders on Capitol Hill ramped up supportive care for veterans and their families. They first acknowledged the higher rates of diagnosed patients within the military community and the need to increase support for veteran care—despite not being able to pinpoint the exact cause. They increased budget to support medical care at VA centers, in addition to costly services and equipment necessary to provide ALS patients and caregivers with much-needed support.
From Hoyer Lifts for caregivers to safely move patients to eye-command communication computers, respirators, specialized motorized wheelchairs, ramps, home modifications, customized mobility support vans, and homecare support—basic quality care for veterans with ALS comes at an astronomical financial burden.
When it pertains to neurological diseases, the VA allocates funds for veterans in addition to their families as service-connected benefits, not as routine healthcare needs. This critical distinction means that, although the medical community does not fully understand the cause or cure of the disease, benefits for both the veteran and family members are covered under the presumptive service connection.
This includes additional benefits that enable veterans to be cared for at home through adapted housing, adaptive equipment, automobile grants, VA compensation and special monthly compensation for serious disabilities, and survivor and dependent compensation and education benefits. The aim is to provide quality care for patients while helping to mitigate the additional long-term financial and emotional toll that ALS can have on their spouses and dependents.
You Can Help Accelerate a Cure through ALS Research
May is ALS Awareness Month nationwide. The goal is to increase public understanding of the disease and to drive medical research into finding a cure to the fatal and progressive neurodegenerative disorder that affects upper and lower neurons in the brain and spinal cord. When the motor neurons degenerate, the brain is no longer able to control muscle movement. That progressively stops the body from having the ability to move, talk, eat or breathe. While awareness and understanding of the disease has received greater attention and research funding, finding a cure remains elusive for both sporadic and familial ALS (See: What is ALS? for more facts).
Whether you’re interested in becoming an advocate for policy change, or you’d like to participate in upcoming events, or you wish to donate time or money, visit the ALS Association to find out how you can make a difference today.