Sen. Baldwin: Leads effort to expand access to benefits for veterans with rare muscle disease

Veterans with Inclusion Body Myositis face a lengthy, difficult process to access earned disability benefits

WASHINGTON, D.C. – U.S. Senator Tammy Baldwin (D-WI) led a bipartisan, bicameral group of lawmakers in urging the Trump Administration’s Department of Veterans Affairs (VA) to make it easier for veterans suffering from Inclusion Body Myositis (IBM) to receive disability benefits. While IBM is more than 10 times as prevalent among veterans as among civilians, the VA does not currently recognize the disease as a presumptive service-connected condition. 

IBM is a muscle disease similar to Amyotrophic Lateral Sclerosis (ALS) in its profile as a rare, progressive, incurable neuromuscular disease that occurs in veterans at higher rates than in the civilian population. In the letter to VA Secretary Doug Collins, the lawmakers called on the VA to recognize IBM as a presumptive service-connected condition, as it does for ALS.

“Veterans diagnosed with IBM must navigate a lengthy and burdensome individualized claims process to establish direct service connection … Yet unlike ALS patients, Veterans with IBM are not afforded a presumptive pathway to benefits, resulting in inconsistent adjudications and inequitable outcomes,” the lawmakers wrote.

The Myositis Association estimates there are 189 IBM cases per one million veterans, compared with 15 cases per one million civilians. The Myositis Association studied VA records and found an 82% denial rate of claims for IBM, with some veterans hiring private lawyers and waiting over 10 years to complete the appeals process and achieve a service-connected disability rating for IBM. The VA also does not formally track IBM and has no dedicated diagnostic code for it, making it more difficult for veterans to obtain exams, documentation, and accurate disability ratings. IBM does not have a clearly known cause, complicating the process of proving service connection.

The National Academies of Sciences, Engineering, and Medicine appointed a committee to study eight neurodegenerative conditions, including IBM, and their relationship to toxic exposure during military service. The findings are expected in summer 2027.

“While we look forward to the findings of that review, we respectfully emphasize that Veterans currently suffering from IBM should not be left waiting for recognition and relief,” the lawmakers continued.

Senator Baldwin has long worked to improve health care and access to benefits for veterans. Senator Baldwin worked to pass the Honoring Our PACT Act of 2022, a bill that established presumptive service-connected status for more than 20 conditions. Baldwin has also supported constituents’ advocacy efforts with respect to conditions that disproportionately affect the veteran population.

The letter was led in the House by Representatives Gus Bilirakis (R-FL), Sarah Elfreth (D-MD), and Mike Thompson (D-CA).

“Thank you to each Member of Congress who signed on to this letter and supported military veterans who live with inclusion body myositis. TMA proudly stands with you in calling upon the Veterans Benefits Administration at the US Department of Veterans Affairs to approve a presumptive service connection for veterans with IBM,” said Rich DeAugustinis, chair of the Myositis Association board of directors. “The Myositis Association is especially grateful for the leadership and empathy of the four letter sponsors, who have brought tremendous visibility to the needs of veterans and care partners living with IBM. Special thanks to Representatives Gus Bilirakis, Mike Thompson, and Sarah Elfreth; and to Senator Tammy Baldwin. Your continued courage in demanding the very best for those who have served is inspirational!”  

Full text of the letter is available here and below.

Dear Secretary Collins,

We respectfully write to request your consideration of amending Title 38 § 3.318 to include Inclusion Body Myositis (IBM) as a presumptive service-connected condition under VA regulation. Currently, Veterans diagnosed with Amyotrophic Lateral Sclerosis (ALS) after active duty receive presumptive service connection due to the disease’s severity, progression, and association with military service. However, IBM – a progressive, incurable neuromuscular disease with significant molecular, clinical, and pathological similarities to ALS – remains excluded. As a result, Veterans diagnosed with IBM must navigate a lengthy and burdensome individualized claims process to establish direct service connection, despite growing evidence linking environmental exposures during military service to both ALS and IBM. Experts, including Dr. Thomas Lloyd of Baylor University (formerly of Johns Hopkins University) and Dr. Todd Cohen of the University of North Carolina, have highlighted the overlap between these conditions and the heightened exposure risks faced by military populations. According to a review by Dr. Julie Tomaska, a former member of the VA National Research Advisory Council, the prevalence of IBM among Veterans is approximately 189 per million, compared to 15 per million in the civilian population. The review also found that Veterans with IBM experience significantly higher mortality rates and often develop the disease 10 to 15 years earlier than the civilian population. Like ALS, IBM causes irreversible muscle weakness, loss of mobility and fine motor function, difficulty swallowing, and eventually respiratory failure. There is currently no cure or effective treatment. Yet unlike ALS patients, Veterans with IBM are not afforded a presumptive pathway to benefits, resulting in inconsistent adjudications and inequitable outcomes.

According to a July 2025 VA Freedom of Information Act response, 6,771 Veterans nationwide are currently receiving care for IBM through the VA healthcare system. The same response reflects a 221% increase in diagnosed cases since 2010, underscoring the growing impact of this debilitating disease and the need for further research into potential service-related and environmental causes. This issue also aligns with broader congressional efforts to better understand neurological diseases associated with toxic exposures, including work being done through the Healthy Brains Act and a current National Academies of Sciences, Engineering, and Medicine review examining links between military-related exposures and neurodegenerative conditions, including IBM. While we look forward to the findings of that review, we respectfully emphasize that Veterans currently suffering from IBM should not be left waiting for recognition and relief. Given the relatively limited but clearly identifiable affected population, we believe this matter may be appropriately addressed through the Department’s existing regulatory authority.

Thank you for your continued commitment to our nation’s Veterans and for your consideration of this important request.

An online version of this release is available here.