U.S. military veterans with Inclusion Body Myositis are urging the Department of Veterans Affairs to recognize the rare muscle disease as a service-connected disability [1].
This classification is critical because the VA does not currently recognize the condition as linked to military service. Without this designation, affected veterans face denied claims, delayed medical care, and mounting out-of-pocket costs for treatment [1, 2].
Inclusion Body Myositis, or IBM, is a devastating condition that causes progressive muscle weakness and atrophy. Veterans across the United States, including those in Oregon and Georgia, have reported that the disease is linked to their time in service [3, 4]. However, the lack of official recognition means many are fighting a dual battle against a degenerative disease and a bureaucratic healthcare system [2].
One veteran featured in reporting served 21 years [5]. For many in this position, the struggle for recognition is a race against the clock as the disease progresses. The physical toll of IBM often limits mobility and independence, making timely access to specialized care a necessity rather than a preference [4].
“We’re running out of time,” a veteran said in an interview with 11Alive [4].
The campaign for recognition focuses on the need for the VA to update its criteria to include IBM. Advocates said that the current denial of benefits ignores the environmental or physical stressors encountered during military service that may contribute to the onset of the disease [1, 2].
Until the VA changes its policy, veterans must continue to navigate a complex appeals process to secure the benefits, and healthcare, they believe they earned through their service [2, 3].
““We’re running out of time””
The struggle for IBM recognition highlights a gap between current medical understandings of rare diseases and the VA's established lists of service-connected disabilities. If the VA grants this status, it would likely trigger a surge in claims and a significant increase in federal healthcare spending for specialized muscle-disease treatments.
