Early Successes in Remote Research: Enabling Enrollment in Clinical Trials
October 30, 2024
Veterans are disproportionately affected by ALS, and the VA recognizes that ALS is presumptively caused by their service for our country.
In this blog, we share information about:
- Heightened risk of ALS among Veterans
- How you can help pass the Elizabeth Dole Home Care Act, pending legislation that would improve home care options for Disabled Veterans
- How Synapticure’s caregiver model supports people with neurodegenerative diseases
If you or someone you know is a Veteran diagnosed with ALS or another neurodegenerative disease, there are many resources available to help.
ALS in Veterans
According to the CDC’s ALS Registry, approximately 32,000 Americans are currently battling ALS. One in six of those is a Veteran. Every day in America, three Veterans are diagnosed with ALS while another three die from it. Based on data from a 2006 report, VHA Directive 1101.07 concluded that 1,055 Veterans die of ALS each year. Although outdated and likely underestimated, the impact of this statistic is, nonetheless, astounding. Since 9/11, over three times more Veterans have lost their lives to ALS than those lost in combat in Iraq and Afghanistan combined.
While we still do not know why Veterans are more at risk, researchers hypothesize the increased risk may be due to a combination of exposure to heavy metals, diesel & jet fuel, pesticides/herbicides, TCE & PCE, industrial toxins, chemicals, radiation, hypoxia, and cyanobacteria in Middle East soil.
Because of the disproportionate number of Veterans who are affected by ALS, the VA now recognizes ALS as a presumptive service-related disease. This resulted, in significant part, because of the leadership and Congressional testimony of Air Force pilot, Brigadier General Thomas Mikolajcik (“General Mik”), Commander of the 437th Airlift Wing at the Charleston AFB.
Because of General Mik's advocacy, if you served continuously in the military for at least 90 days and you have a “definite” diagnosis of ALS, you are entitled to significant benefits. We encourage you to immediately contact your local PVA to apply for the benefits you deserve. Those benefits include modifications to your home, a stipend for a van, durable medical equipment, caregiver benefits and much more. You can find a list of the forms you need to complete and other helpful resources on the I AM ALS Veterans website. But the PVA will help you with these too.
Hopefully soon, some of those additional caregiver benefits will come from the Elizabeth Dole Home Care Act. Learn more below about how you can help make that a reality.
Prevalence of ALS in Post 9/11 Veterans
The risk of ALS among Veterans has continued to rise. In 2007 when General Mik testified before Congress, that risk was 1.6x higher for Veterans than civilians. But studies about Gulf War Veterans (“GWV”) showed that risk was 2x higher in those deployed.
By 2019, this study in Military Medicine revealed more foreboding statistics. In post-9/11 Veterans, the prevalence increased to 19.7 per 100,000 people, whereas it had been 5.8 per 100,000 in GWV. Now the risk is nearly 4x higher than the civilian population.
ALS prevalence among post-9/11 Veterans varies by branch of service. Prevalence is highest among Air Force personnel (33.2 per 100,000), and lowest (4.4 per 100,000) among Marines. The prevalence among Army (19.8 per 100,000) and Navy/Coast Guard (21.4 per 100,000) is similar.
Those occupations at highest risk are tactical operations officers, which includes pilots, aircraft crew, missile, and combat operation staff, where the prevalence is 51.8 per 100,000 – nearly 10x the civilian population. Exemplifying the real-life implications of this marked rise in ALS among pilots? General Mik and three other pilots in his same squadron from Charleston AFB also died of ALS: Kreg Palko, Lieutenant Colonel Doug Hetzel, and Major General Kip Self.
Tragically, while the risk is higher, the age of onset is lower. This was first observed in GWV. Then the 2019 Military Medicine study of post 9/11 Veterans again confirmed this concerning trend. For those with a definite ALS diagnosis, the average age was 39.7; in those with a probable ALS diagnosis, the average age was 36.3. Thus today’s Veterans are being diagnosed with ALS approximately two decades earlier than the average age of onset.
In his Congressional testimony in 2007, General Mik challenged our country to step up its commitment to Veterans with ALS:
“If these soldiers were dying in the field rather than quietly at home… we would leave no stone unturned. We would use the best existing resources to make sure they had whatever they needed to survive… to ensure that no man or woman is left behind.”
One of the things Veterans need to survive is the proper care, including access to caregivers who can help them stay in their homes. The Elizabeth Dole Home Care Act can help make that commitment a reality.
The Elizabeth Dole Home Care Act
This month, we celebrate some hopeful news for Veterans with ALS. The Elizabeth Dole Home Care Act of 2023 has overcome its first hurdle, passing in the House of Representatives with a bipartisan vote of 414-5. Celebrating this vote, Congresswoman Brownley said:
“Every Veteran should have the right to a peaceful and dignified life after their service to our country, and every Veteran should have the right to stay in their home and receive the care they need, the care they have earned, and the care they deserve.”
The Elizabeth Dole Home Care Act would provide critically needed improvement in home care and long-term care options for Veterans. The bipartisan bill (H.R. 542) was introduced by Julia Brownley (D-CA) and Jack Bergman (R-MI) of the Health Subcommittee on Veterans’ Affairs. In part, the bill:
- Increases the home care expenditure cap from 65% to 100% of nursing home costs; and for specified Veterans with ALS or spinal cord injuries, the VA may exceed 100% of the nursing home cost if it determines the higher cost is in the best interest of such Veterans
- Creates a pilot program to provide home health aides for Veterans that reside in communities with a staffing shortage
- Expands access to home and community-based alternative care programs to Veterans at all VA medical facilities
- Requires the VA to review staffing and resource needs of the Office of Geriatrics and Extended Care and Caregiver Support Program Office
This bipartisan bill has a multi-pronged benefit: (1) institutional care can be reserved for Veterans who need intensive, round-the-clock care; (2) it will help address shortages and waitlists because of limited resources at long-term care facilities; but most importantly, (3) it provides Veterans with resources so they can stay in their own homes.
Now the bill is on to the Senate, where Senate Bill 141 was introduced by the Chair and Ranking Member of the Senate Veterans’ Affairs Committee, Senators Jon Tester (D-MT) and Jerry Moran (R-KS). Currently, the bill has 27 co-sponsors. If you don’t see your Senators’ names on this list, you can call their offices and ask them to co-sponsor S. 141 to help Veterans with ALS who get this disease from serving our country. I AM ALS has an app you can use to send an email as well.
The ALS community is grateful to Elizabeth Dole for her leadership in getting this bill introduced and supporting its passage. As Senator Moran said:
“Senator Elizabeth Dole represents the millions of caregivers who have worked behind the scenes to care for our nation’s Veterans who are impacted by advanced age or catastrophic injuries.... Caregivers help Veterans maintain their independence and stay in their own homes in their own communities for as long as possible as they age. The Elizabeth Dole Home Care Act expands access to home and community-based services. It is fitting we name this legislation after Elizabeth Dole, who has worked as an advocate to honor and recognize our Veterans and their caregivers.”
We agree that caregivers are the “hidden heroes” and we want our community to know that we wholeheartedly support and encourage people to help pass the Elizabeth Dole Home Care Act for Veterans with ALS.
Commitment to Caregivers
Senator Elizabeth Dole has long been an advocate for Veterans and their caregivers. She was the wife and caregiver for Senator Bob Dole, an Army Veteran who was wounded during WWII and spent years rehabbing. Years later, in 2010, Bob Dole was hospitalized at Walter Reed Hospital for about 11 months. During that time, Elizabeth Dole told caregiver.com that she recognized the need for more support for Veterans’ caregivers:
"Being there almost every day myself, I got to know many of the wounded warriors and their caregivers. I just could not believe what a challenging situation it was for the caregivers…. They were going to have to handle the legal affairs for the family and the financial matters. They were also dealing with healthcare systems that had different structures and trying to coordinate all of that. And then, of course, once they are home, the challenges just really multiply … all of that while raising children. It just pulled at my heartstrings to see all of this going on and think, what in the world can I do to make a difference?"
Thus, in 2012, Senator Elizabeth Dole created The Elizabeth Dole Foundation to raise awareness and support for the 5.5 million military families “caring for our nation’s wounded warriors at home.” She has been leading the movement to expose the military caregiver crisis and generate critical resources to help these “hidden heroes.” And even after Senator Bob Dole’s death, in 2021, Elizabeth Dole continued to advocate for Veterans and their families. The Elizabeth Dole Home Care Act is the manifestation of decades of her tireless work and advocacy.
Similarly, Synapticure's co-founder and CEO, Sandra Abrevaya, is passionate about helping caregivers and families battling neurodegenerative diseases. She is the caregiver for her husband, Brian Wallach, who was diagnosed with ALS. Although Brian is not a Veteran, Sandra has spoken candidly about the challenges of full-time caregiving.
In the second of a three-part story entitled, “What ALS has taken from one couple and how they've held on to love,” Sandra revealed the demands of caregiving to Juana Summers of NPR’s All Things Considered:
"The caregiver's day for someone living with ALS is dramatically different based on what your support is in the home. There was a period of time when we didn't have any external caregiving support, and I did it all alone. And for several months, I didn't leave Brian's side for a moment. I literally slept by his side to make sure that he didn't have trouble breathing in the middle of the night. And I helped him take his pills. And he couldn't move his arms, and I fed him pill by pill and held the glass of water to his mouth. I prepared his food. I cut it into little pieces so that he wouldn't choke on it. And then I fed it to him, spoon by spoon, and I could not leave the home."
For people who cannot afford to pay for additional caregiving support, which can run upwards of $300,000 per year, their entire life is upended. Even with outside caregiver support, the loved one is trying to manage needs in the home, and juggle healthcare needs, appointments, prescriptions, equipment, trials, testing, therapy and insurance. This takes a toll on the entire family. At Synapticure, we built our model on helping not just the patient, but supporting the whole family, especially the caregiver. Thus, our mission is aligned with Elizabeth Dole’s mission to support military caregivers too.
Whether you are a Veteran or a civilian with ALS, Synapticure can help you find the right caregiving services to support you and your family. ‘And if you are a Veteran battling ALS or any other neurodegenerative disease, Synapticure is a Community Care Network provider across TriWest and OptumCare Regions 1-4, currently covering every state but Alaska. We would be honored to support your neurology care needs.
1 Since 2001, military campaigns in the Gulf have taken the lives of 6,842 American personnel, according to the Defense Casualty Analysis System (DCAS). In Operation Iraqi Freedom 4,418 Americans were killed. In Operation Enduring Freedom in Afghanistan, 2,350 Americans were killed. And Operation New Dawn claimed 74 American lives from 2007-2011.
2 In addition to serving as North Carolina’s first female Senator from 2003 to 2009, Elizabeth Dole served as Secretary of Transportation under Ronald Reagan and Secretary of Labor under George H.W. Bush before becoming head of the American Red Cross.
About the Author
Dr. Tom Faber is a Veteran, serving in the Army (in the Field Artillery and then the Medical Corps after medical school). He has been a practicing neurologist for 38 years and has cared for thousands of patients with Alzheimer’s, ALS, Parkinson’s, dementia, and other neurodegenerative diagnoses.
