Veterans

Diagnosis Denied: How the VA Is Failing Veterans with a Disease They May Have Caused

Veterans with an IBM Diagnosis are being Denied

Greg Rathburn spent years helping keep some of the most advanced aircraft in U.S. military history airborne. As an avionics technician in the Air Force and Air National Guard, he worked on the SR-71 Blackbird — a reconnaissance plane so secretive it flew at the edge of space, and so mechanically demanding that it routinely leaked the very jet fuel that kept it in the sky. Rathburn breathed those fumes. He worked in those hangars. He did his job.

Decades later, the job is doing something to him.

In 2008, Rathburn was diagnosed with inclusion body myositis — IBM — a progressive, incurable muscle disease that robs its victims of their grip, their gait, and eventually their independence. By 2026, he was relying on a breathing mask to get through the night. His morning routine looked nothing like it had during his years of service.

For years, Rathburn and his wife believed the chemicals he'd been exposed to during his career had triggered the disease. For years, the Department of Veterans Affairs disagreed — or more precisely, refused to say either way. His disability claims were denied. The VA would not recognize IBM as service-connected. Without that classification, the financial support and full medical coverage that disabled veterans depend on remained out of reach.

Then, on May 1, 2026 — just days before a national investigative documentary on the subject aired — Rathburn received word that he had been granted a 100% service connection for his IBM disease. He had finally won. But the question no one in Washington seems willing to answer is: how many others are still waiting?

A Disease You've Never Heard Of, Striking People You Should Never Forget

Inclusion body myositis is not a household name. Most Americans — and many physicians — have never encountered it. But among veterans, a troubling pattern has emerged that researchers and advocates say demands urgent federal attention.

IBM is the most common acquired muscle disease in adults over the age of 50. It presents gradually, often beginning with unexplained falls, a weakening grip, or difficulty rising from a chair. The onset is so slow and insidious that years can pass before a diagnosis is made. There is no FDA-approved treatment. Unlike related inflammatory conditions, IBM does not respond to corticosteroids or immunosuppressant drugs. Physical and occupational therapy can slow the decline, but nothing stops it. Most patients eventually require a cane, then a walker, then a wheelchair. Some develop difficulty swallowing, which can lead to aspiration pneumonia. The disease is, in the bluntest terms, a slow-motion siege on the human body.

It disproportionately affects men — at roughly twice the rate of women. It typically strikes after age 50. And according to mounting evidence, it appears to strike veterans at a dramatically elevated rate.

Advocates with The Myositis Association, which has been studying the connection between IBM and military service, say the numbers are staggering. Depending on the study and methodology, veterans may be developing IBM anywhere from six to nineteen times more frequently than the general population. That is an extraordinary statistical disparity — one that, in any other context, would trigger immediate federal investigation and response.

"Veterans really are getting this orders of magnitude higher than the civilian population," said Kerry Baker, an attorney and veteran who has been tracking the issue. "And that was enough for me right there, as a veteran myself, to say this is something we need to look into."

The Science Is Speaking. The VA Is Not Listening.

The research on IBM in veterans is still developing, but what exists is damning enough to demand attention.

In January 2025, Dr. Vladimir M. Liarski, a rheumatologist and physician-scientist at the University of Pittsburgh and the VA Pittsburgh Healthcare System, published what The Myositis Association called the most comprehensive analysis of IBM among U.S. veterans to date. Drawing on data from the VA's own Corporate Data Warehouse, Liarski's retrospective study examined 732 IBM patients and 1,215 matched controls, with service periods ranging from World War II through the Persian Gulf War.

IBM, Liarski noted, is the most common idiopathic inflammatory myopathy in adults over 50 — and remains poorly understood, with no approved therapies and significant unanswered questions about how and why it develops. What the study confirmed is that veterans are getting it, in large numbers, and that the VA's own internal data holds the key to understanding why.

The Myositis Association has called on the medical and research communities to prioritize IBM in future studies and healthcare planning. The organization also operates a Military Veteran with Myositis Affinity Group — a monthly support gathering for veterans navigating the disease largely on their own.

The frustration among veterans with IBM is not simply medical. It is bureaucratic, systemic, and deeply personal. These are men and women who went where their country sent them, did what their country asked, and are now being told there is no reason to believe their service had anything to do with what is destroying their bodies.

A System Built to Deny

To understand why IBM veterans are in legal and financial limbo, you have to understand how the VA's disability system works — and how it has repeatedly failed veterans facing emerging diseases.

When a veteran files a disability claim, the burden is on them to demonstrate that their condition is "service-connected" — that it was caused or aggravated by their time in uniform. In most cases, this is a high bar. Veterans must gather medical records, service records, and often pay out of pocket for independent medical opinions.

The system offers one significant shortcut: presumptive conditions. When a disease is designated "presumptive," the VA automatically assumes it is service-connected for eligible veterans. They do not have to prove a link — the government accepts it. This is how ALS, also known as Lou Gehrig's disease, is treated. Veterans are 1.5 times more likely to develop ALS than the general population, and the VA recognized this statistical reality by granting ALS presumptive status.

IBM veterans are watching that precedent and asking a simple question: if ALS gets presumptive status because veterans develop it at 1.5 times the civilian rate, why is IBM — which veterans may develop at six to nineteen times the civilian rate — still being handled case by case?

The PACT Act of 2022 represented the most significant expansion of VA benefits in a generation, adding over twenty presumptive conditions tied to burn pit exposure, Agent Orange, radiation, and other toxic hazards. It demonstrated that Congress and the VA can move when the political will exists. For IBM veterans, that will remains absent.

The VA's Answer: Not Yet

Asked directly about the IBM disparity, the VA's response has been measured and, to veterans' advocates, deeply frustrating.

"VA recognized ALS as a presumptive condition based on evidence showing a possible association between ALS and military service," said VA Press Secretary Quinn Slaven in a statement released in May 2026. "While no similar association has been identified for inclusion body myositis, VA continues to investigate this condition and asked the National Academies this year to conduct a new, comprehensive study on IBM. VA continues to decide disability benefits for IBM on a case-by-case basis."

The VA also argued that the absence of a formal diagnostic code for IBM does not prevent the agency from making service-connection decisions. In theory, veterans can still file claims and win — as Rathburn ultimately did. But in practice, the case-by-case approach creates an uneven battlefield. Veterans without legal representation, without persistent advocacy, without the stamina to fight for years, lose. Veterans who happen to get the right claims examiner may win. Outcomes depend on luck and endurance rather than equity and evidence.

Meanwhile, nobody is formally tracking IBM diagnoses across the veteran population. There is no national registry. There is no coordinated federal effort to understand the scope of the problem. The VA's own data warehouse, which Liarski used for his 2025 study, contains the information needed to answer basic epidemiological questions — but the agency has not treated those questions as urgent.

"The lack of a diagnostic code," the VA insists, "in no way hinders VA's ability to make decisions." What it does hinder, advocates say, is the ability to count, to track, and to understand what is happening to veterans at scale.

"I Wouldn't Wish This On Anybody"

Dennis, a veteran in Florida, has been living with IBM for years. He prays at night — for himself, for fellow veterans with ALS, for the IBM men and women he's connected with through support groups.

"Can we get a fix for this so that the younger guys are not going to have to suffer through this?" he said. "There is no cure."

His morning routine, reporters who spoke with him noted, bore no resemblance to what it had looked like nearly sixty years ago. He has watched his body betray him in slow motion, watched other veterans go through the same thing, and watched the government take no coordinated action.

Greg Rathburn, on his best days, echoes the same sentiment. "I wouldn't wish this on anybody," he said before his claims victory was announced. "Look at me, live my life for a day."

What Rathburn and Dennis represent — men who served, men who were exposed, men who are now disabled — are not anomalies. They are, advocates argue, the visible edge of a much larger and largely invisible crisis.

Congress Stirs, Slowly

The national investigative documentary "Diagnosis Denied," which aired in May 2026 and was produced by a coalition of local television investigative teams from Jacksonville, Atlanta, St. Petersburg, Portland, and Denver, appears to have shaken something loose on Capitol Hill.

In a letter dated May 5, 2026, Rep. Gus Bilirakis wrote to VA Secretary Doug Collins asking the department to consider amending Title 38 — the federal law governing veteran benefits — to formally recognize IBM. The letter followed reporting by the investigative team and represents the clearest congressional signal yet that the issue is gaining traction.

Whether that letter becomes legislation, and whether that legislation becomes law, remains to be seen. The VA has committed to a National Academies study on IBM — a process that can take years and that, even when complete, does not guarantee action.

Veterans and their families do not have years. The disease progresses whether Washington moves or not.

A Precedent That Should Not Be Ignored

The history of veterans' health policy is, in many ways, a history of delayed recognition. Agent Orange. Gulf War Syndrome. Burn pits. In each case, veterans reported symptoms, advocates raised alarms, the VA resisted, studies accumulated, and eventually — sometimes decades later — the government acknowledged what veterans had known all along.

The PACT Act was a rare and meaningful correction to that pattern. It was named after Sergeant First Class Heath Robinson, who died in 2020 from toxic exposure during his service. It was passed because veterans and their families refused to be quiet.

IBM veterans are now following that same path. They are organizing. They are testifying. They are filing claims, fighting denials, and dying while they wait.

The question is not whether inclusion body myositis is connected to military service. The data — incomplete as it still is — points clearly in one direction. The question is whether the Department of Veterans Affairs, and the Congress that oversees it, will treat veterans with IBM the way veterans with ALS were treated: with the presumption of service, the weight of the doubt placed in the veteran's favor, and the recognition that this country owes those who served more than a case-by-case argument.

Greg Rathburn fought for years and finally won. Thousands of veterans are still fighting. Many will lose — not because the evidence is against them, but because the system was not built to find them.

That is the diagnosis the VA has yet to face.

ArmedForcesNews.com has submitted Freedom of Information Act requests to the Department of Veterans Affairs seeking data on IBM claim filings, denial rates, and internal communications regarding presumptive status review. Veterans diagnosed with inclusion body myositis who have been denied VA disability benefits are encouraged to contact us at tips@armedforces news.com.

If you are a veteran diagnosed with IBM and have been denied VA disability benefits, The Myositis Association also wants to hear your story.

Dustin Reed Terry is an investigative reporter for ArmedForcesNews.com covering veterans' policy, military health, and the Department of Veterans Affairs. He can be reached at dustinreedterry@gmail.com.