Bilirakis Leads Bipartisan, Bicameral Effort to Expand Access to Benefits for Veterans with Rare Muscle Disease

WASHINGTON, D.C. – Today, Congressman Gus Bilirakis (R-FL-12) led a bipartisan, bicameral group of lawmakers in urging Department of Veterans Affairs (VA) Secretary Doug Collins to recognize Inclusion Body Myositis (IBM) as a presumptive service-connected condition. The designation would help Veterans living with this rare, progressive, and incurable muscle disease access disability benefits without having to individually prove that their military service caused their illness.  The effort builds on a letter Bilirakis sent to the VA earlier this year. He is now joined by 53 lawmakers in calling for action to address the significant obstacles Veterans with IBM face when seeking benefits.

 “Our Veterans should not have to spend years fighting a devastating disease while also fighting a burdensome bureaucracy to receive the benefits they have earned,” said Congressman Bilirakis. “Veterans living with Inclusion Body Myositis face progressive muscle weakness, declining independence, and tremendous uncertainty for themselves and their families. With this disease reported at substantially higher rates among Veterans, the VA must take these concerns seriously and establish a fairer pathway to benefits. I am proud to lead this bipartisan effort to ensure these Veterans are heard, treated fairly, and given the support they deserve.”

 According to data reviewed by The Myositis Association (TMA), IBM affects approximately 189 out of every one million Veterans, compared with 15 out of every one million civilians - more than 12 times the prevalence. Like Amyotrophic Lateral Sclerosis (ALS), IBM is a progressive, incurable disease that can cause profound physical limitations. Yet, while the VA recognizes ALS as a presumptive service-connected condition for qualifying Veterans, Veterans diagnosed with IBM must establish service connection through an individualized claims process.

 “Thank you to each Member of Congress who signed on to this letter and supported military veterans who live with inclusion body myositis. The Myositis Association 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 TMA board of directors. “TMA is especially grateful for the longtime leadership and empathy of Representative Gus Bilirakis, the lead sponsor, who has brought tremendous visibility to the needs of veterans and care partners living with IBM working with Representatives Mike Thompson, Sarah Elfreth, and Senator Tammy Baldwin. Your continued courage in demanding the very best for those who have served is inspirational!”

 “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 consequences for affected Veterans and their families can be substantial. The Myositis Association reports that a review of VA records found an 82% denial rate for IBM claims. Some Veterans have sought professional assistance and spent more than a decade pursuing appeals before securing recognition that their condition is service-connected.  These challenges are compounded by the absence of a dedicated VA disability diagnostic code for IBM, which can complicate documentation and accurate disability ratings. Because the disease’s cause remains unclear, establishing an individual medical link to military service presents an additional obstacle.  Recognizing IBM as a presumptive service-connected condition would remove the requirement for qualifying Veterans to individually establish that link, helping reduce administrative burdens and promote more consistent decisions.

The National Academies of Sciences, Engineering, and Medicine is reviewing the relationship between selected military exposures and eight conditions, including IBM. Findings are expected in summer 2027. While supporting that research, the lawmakers emphasized the immediate needs of Veterans already living with the disease.

 “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.

 Congressman Bilirakis is leading the House effort alongside Representatives Sarah Elfreth (D-MD) and Mike Thompson (D-CA), with Senator Tammy Baldwin (D-WI) leading the effort in the Senate. The House Members who signed the letter are listed below in alphabetical order.

1. Ansari, Yassamin
2. Baird, James
3. Baldwin, Tammy
4. Bean, Aaron
5. Beatty, Joyce
6. Bilirakis, Gus
7. Bishop, Sanford
8. Carson, André
9. Clarke, Yvette
10. Davis, Donald
11. Elfreth, Sarah
12. Ellzey, Jake
13. Fields, Cleo
14. Fitzpatrick, Brian
15. Foushee, Valerie
16. Fuller, Clay
17. Garcia, Sylvia
18. Gottheimer, Josh
19. Grijalva, Adelita
20. Hill, J.
21. Huffman, Jared
22. Hurd, Jeff
23. Johnson, Henry
24. Kamlager-Dove, Sydney
25. Landsman, Greg
26. Lawler, Michael
27. Leger Fernandez, Teresa
28. Lofgren, Zoe
29. Luna, Anna Paulina
30. Lynch, Stephen
31. Malliotakis, Nicole
32. Matsui, Doris
33. McBath, Lucy
34. McBride, Sarah
35. McCormick, Richard
36. McGovern, James
37. Miller, Carol
38. Norman, Ralph
39. Panetta, Jimmy
40. Pfluger, August
41. Quigley, Mike
42. Randall, Emily
43. Raskin, Jamie
44. Salazar, Maria
45. Sewell, Terri
46. Sorensen, Eric
47. Stansbury, Melanie
48. Suozzi, Thomas
49. Thompson, Mike
50. Tokuda, Jill
51. Van Orden, Derrick
52. Vasquez, Gabe
53. Vindman, Eugene
54. Watson Coleman, Bonnie