Recently, two members of TMA’s Military Veterans with Myositis Affinity Group were successful in acquiring disability benefits from the Veterans Administration. These benefits are significant. Not only are these former service members eligible to receive complete healthcare services and disability compensation, they can also access important benefits such as a travel allowance for medical appointments, medical equipment, a disability housing grant to adapt their home, stipends for their spouse as a caregiver, and a variety of other assistance.

This mission for these two Vietnam-era veterans was not easy, however. In both cases, it took more than a decade for the VA to agree that their inclusion body myositis (IBM) was a service-connected condition and grant them full benefits. In the end, both men required the services of an experienced VA claims agent, who is himself a veteran, to accomplish the goal. 

Augie DeAugustinis was a Navy pilot for 20 years before retiring to a career with a commercial airline. In 2007, he was diagnosed with IBM and filed his first claim with the VA in 2012. After a second claim in 2018 and two rounds of appeals, he was finally granted 100% disability last year.

Larry Leisher, who spent nine years in the Air Force, was diagnosed in 2005 and filed his first claim for VA benefits in 2006. After two subsequent claims in 2011 and 2019 and three rounds of appeals, he too was granted 100% disability just this year.

This long and challenging journey is a typical one for military veterans living with IBM who try to convince the Veterans Administration that they deserve these benefits. To date, TMA is aware of only a handful of individuals who have accomplished this feat.

According to Kerry Baker, the agent who successfully represented Augie and Larry in their appeals to the VA, this is because IBM is a condition that doesn’t show itself until well after the service member is discharged, so the service connection is not necessarily obvious.

“In most cases, you need three things to show service connection in order to claim VA disability benefits,” Kerry says. “You need an in-service event, a diagnosis of what you’re currently claiming, and a medical link between the two.”

There are other types of claims, however, that don’t require that medical link. Perhaps the most famous of these is Agent Orange, a chemical defoliant used widely during the Vietnam Conflict that has been shown to be highly toxic to humans. Vietnam veterans who served in areas where Agent Orange was used can claim benefits for an array of health conditions without having to show that direct medical link. By law, conditions like diabetes, lung cancer, heart disease, prostate cancer, and others are entitled to “presumptive” service connection for these vets, meaning the law presumes they are causally related to the exposure during military service.

Other disabling conditions are also designated presumptively service connected. Among these is amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. Veterans who have ALS need only demonstrate that they served in the military for a minimum of 90 days to be granted full disability.

Interestingly, ALS shares some biological similarities with IBM. And like ALS, IBM has also been shown to be more prevalent in those who have served in the military than in the general population. And this may be the key to benefits for IBM. In filing appeals for both Augie and Larry, Kerry provided evidence in the form of letters from two prominent myositis neurologists affirming this connection.

Kerry is careful to stress that just because a couple guys with IBM produced these letters and convinced a judge that they should receive benefits does not guarantee that others who make this appeal will be successful.

“The Board of judges are independent,” Kerry says. “One judge may decide a case one way, and the one sitting next to them can decide it completely opposite. It’s a solid argument to make, but I don’t want to rest my laurels on that alone.”

In Larry’s case, as well, the judge specifically stated that her decision to award him benefits could not be used as a precedent for other cases.

This is why a group of veterans with IBM—including Augie and Larry—are vigorously advocating for legislation to change VA regulations. More than three dozen of these men have signed their name to a letter petitioning Congress to amend the section of the law that provides for disability benefits for those with ALS to also include IBM as presumptively service connected.

If this effort is successful, military veterans with IBM will no longer need to struggle for years and years to receive the benefits they deserve. They will, by law, be awarded a service connection for their IBM on their initial claim, no denial, no appeals.

Kerry Baker is a Senior Appellate Counsel and accredited Claims Agent for Hill & Ponton, Attorneys at Law as well as a service-connected, combat-disabled veteran of the United States Marine Corps. He previously worked with veterans through the Disabled American Veterans and the Veterans Benefits Administration before moving to the private sector.

Augie DeAugustinis and Larry Leisher are active members of TMA. Larry is co-leader of the TMA Northeast Florida Regional Support Group, Augie served for seven years—three of these as chair—on TMA’s Board of Directors, and both are members of TMA’s Military Veterans with Myositis Affinity Group.

TMA’s Military Veterans with Myositis Affinity Group meets virtually on the second Saturday of the month at 12noon ET. Kerry, Augie, and Larry discussed VA benefits for veterans with IBM in a TMA Empowerment Clinic webinar on Wednesday, November 15. Click here to view this webinar.

View past sessions of TMA’s Military Veterans with Myositis Affinity Group meetings here.

Letter from Dr. Tom Lloyd

Letter from Dr. Todd Cohen

2 comments on “IBM patients battle for veterans benefits”

  1. 1
    Charles Bruyea on November 27, 2023

    I have IBM and would like to discuss how I can possibly file a supplemental claim or an appeal to the board of Veterans’ Appeals. They denied service connection for inclusion body myositis (IBM).

  2. 2
    Peter A. Brown on December 2, 2023

    You might be interested in my IBM / VA recent experience: I was diagnosed with IBM about 14 years ago by Dr. Thomas Lloyd. It has progressed each year, but I was still able to walk and drive my car until I broke my leg on April 9th of this year. I spent the next 3½ months mostly lying on my back and not putting much pressure on my leg and only receiving a slight bit of PT. I haven’t been able to walk since then. I applied for VA benefits, filled out all the paperwork, including a copy of our 2022 income tax, and was approved for comprehensive benefits in June. In October, I got a letter from the VA, saying that my benefits were denied, since the income tax form indicated that we were making too much money to qualify. Why they did not say that in June is hard to understand. Anyway, when I called the Lebanon VA Center and complained, a VA rep came down to Lancaster the same day to tell me that she thought the VA had made a mistake. About a week later I got a letter saying that all benefits had been restored.

    My Army experience: After I got my 1A draft notice, I applied to an invitation to audition at USMA, West Point, NY. They were looking for a person as a Chaplain’s Assistant / Organist & Choirmaster at the Post Chapel. I won the audition and was told to volunteer at my draft board in Freeport, Long Island, in June, 1967. From there I went to basic training at Fort Gordon, Georgia for 10 weeks, followed by two years at West Point. I am sure that my IBM had nothing to do with my Army experience.

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