Veterans Demand VA Recognition for Inclusion Body Myositis (IBM)

Veterans across the country are facing a common, devastating challenge: a slowly progressing muscle disease known as inclusion body myositis (IBM). Beyond the physical toll of the condition, many are struggling to have the U.S. Government recognize the disease as service-related, leading to repeated denials of essential benefits and leaving many to pay out-of-pocket for necessary care.

Understanding Inclusion Body Myositis (IBM)

Inclusion body myositis is a rare and incurable muscle disease characterized by a slow progression of muscle weakness. Because the onset is gradual, it can often take years before a patient receives an accurate diagnosis.

According to The Myositis Association, IBM is the most common acquired muscle disease for individuals aged 45 and older. The condition also shows a higher prevalence in men than in women. As the disease progresses, it can significantly impact a person’s ability to perform daily tasks, requiring specialized tools and support to maintain independence.

The Battle for Service-Connected Benefits

For many veterans, the fight against IBM is compounded by an administrative struggle with the Department of Veterans Affairs (VA). Veterans are reporting significant difficulty in having their diagnosis recognized as being connected to their military service, a designation crucial for accessing healthcare and financial support.

The personal toll of these denials is profound. Greg Rathburn, a former Air Force and Air National Guard avionics technician, has faced repeated denials for benefits related to his IBM diagnosis. Reflecting on his experience, Rathburn stated,

“I wouldn’t wish this on anybody.”

Similarly, Ron Miller, a Navy veteran who was diagnosed with IBM in December 2024, reported being denied service-related considerations by the VA five times. These systemic hurdles force veterans to navigate a complex bureaucracy while managing a debilitating illness.

The emotional and physical weight of the disease is felt throughout the veteran community. Jim Cressman, another veteran facing the condition, noted,

“It was an honor to serve. I’m glad I did.”

Meanwhile, Augie DeAugustinis shared the difficulty of adaptation, saying,

“You know, I’ve come to grips with it. It’s not easy.”

Researching the Link to Military Service

A central component of the veterans’ advocacy is the push for scientific recognition of the link between military service and the development of IBM. Research is currently underway to determine if specific aspects of service contribute to the disease’s onset.

Attorney Kerry Baker, who has been involved in documenting these cases, highlighted the potential disparity in diagnosis rates. Baker noted that veterans appear to be developing the disease at rates significantly higher than the civilian population. This observation has fueled the call for the VA to investigate the connection more rigorously.

The urgency of this issue is echoed by those within the community. Dennis McKinney expressed a desire for systemic change, asking,

“Can we get a fix for this so the younger guys don’t have to suffer through this?”

Larry Leisher added,

“We need the VA to see exactly what this disease is and what it’s done to the veterans.”

Key Takeaways

• Disease Profile: Inclusion body myositis (IBM) is a slow-progressing, incurable muscle disease.
• Demographics: It is the most common acquired muscle disease for those 45 and older and is more common in men.
• VA Challenges: Many veterans report multiple denials when seeking service-connected status for IBM.
• Research Focus: There are concerns that veterans may experience IBM at much higher rates than the general population, prompting calls for formal investigation.

Frequently Asked Questions

What makes IBM different from other muscle diseases?

IBM is unique due to its slow, progressive nature and the fact that it is often difficult to diagnose in its early stages. Unlike some other inflammatory myopathies, it can persist and worsen over many years.

Why is service-connection important for IBM patients?

Service-connection allows veterans to access VA healthcare and disability benefits, which can help cover the costs of medical treatments and the specialized tools required to manage the physical limitations caused by the disease.

Is there a cure for Inclusion Body Myositis?

Currently, there is no cure for IBM. Management focuses on addressing symptoms and maintaining as much function and independence as possible.

As research continues and more veterans come forward, the pressure on the VA to recognize the potential connection between military service and IBM is expected to grow. For now, the community remains focused on securing the recognition and support necessary to manage this life-altering condition.