By Rich DeAugustinis, Chair, Board of Directors, The Myositis Association
This week, 54 Members of Congress—Republicans and Democrats, from 26 states, in both the House of Representatives and the Senate—signed a letter asking Secretary of Veterans Affairs Doug Collins to recognize inclusion body myositis (IBM) as a presumptive service-connected condition. It is the strongest show of Congressional support our veterans with IBM have ever had, and I want to take a moment to say thank you.
Why this letter matters
Today, every veteran living with IBM has to prove, one claim at a time, that their military service caused a disease whose cause science has not yet identified. That is a nearly impossible bar. A review of VA records found that more than eight in ten IBM disability claims are denied, and some veterans spend a decade or more in appeals before their service connection is recognized.
The VA already solved this problem once. Veterans diagnosed with ALS receive presumptive service connection, so they do not have to prove the unprovable. Our letter asks the VA to extend that same pathway to veterans with IBM, a rare, progressive, incurable neuromuscular disease that is often found at much higher rates among those who served.
For me, this is personal. My father, Augie DeAugustinis, flew for the Navy for 20 years. After his IBM diagnosis, it took him twelve years, two claims and two rounds of appeals to win the benefits he had earned. No family should have to walk that road.
Thank you to the leaders who made it happen
A letter like this does not happen without champions. Four of them deserve special gratitude from our TMA family.
Representative Gus Bilirakis (R-FL) has stood with veterans living with IBM for a long time. He wrote to Secretary Collins on his own earlier this year, then took on the hard work of leading this bipartisan, bicameral effort. His compassion for these veterans and their care partners has brought the issue a level of visibility we could only have hoped for a year ago. We are very grateful to Rep. Bilirakis, who co-chairs the Congressional Rare Disease Caucus.
Representatives Sarah Elfreth (D-MD) and Mike Thompson (D-CA) co-led the effort in the House, making sure from day one that this was a cause shared across the aisle. That bipartisan foundation is a big part of why so many representatives said yes. Rep. Elfreth serves MD-3, where TMA’s office is located, and Rep. Thompson is Co-Chair of the Military Veterans Caucus.
Senator Tammy Baldwin (D-WI) led the effort in the Senate, bringing the voice of the upper chamber to this request. She has long fought for veterans’ health care and benefits, including her work with the leaders above on the PACT Act, which established presumptive status for more than 20 conditions.
To Representatives Bilirakis, Elfreth, and Thompson, and to Senator Baldwin: Thank you. Your courage in demanding the very best for those who served is an inspiration to all of us.
54 signers from 26 states
In total, 54 Members of Congress signed the letter: 17 Republicans and 37 Democrats, from 26 states. That is more than half of the country, from Hawaii to Massachusetts and from Washington State to Florida.
That breadth matters. It tells the VA that veterans with IBM are not a regional concern or a partisan one. They live in every corner of America, and their elected officials are paying attention. If your Member of Congress is on the list at the end of this post, please take a moment to email, call, or post to thank them.
Thank you to our TMA advocates
Every one of those 54 signatures started with a person. Behind this letter are the veterans, care partners, family members, and the whole myositis community who stepped forward when it counted.
You shared your stories, some of them painful to tell, with reporters and Congressional staff. You called and emailed your Representatives and Senators. You explained, again and again, what it means to live with a disease that slowly takes your strength while you fight the paperwork at the same time. Many of you did this while living with IBM yourselves.
Your voices made the difference. A statistic can be set aside; a constituent’s story is much harder to ignore. To every advocate who raised a hand, including the leaders and members of TMA’s Military Veterans with Myositis Affinity Group: thank you. This success is yours.
What comes next
The letter is now with Secretary Collins. Our next step is to engage VA leadership directly. Together with TMA Executive Director Paula Eichenbrenner, I am requesting a meeting with the VA to understand its current thinking on IBM and its anticipated next steps as the National Academies of Sciences, Engineering, and Medicine continues its review of IBM and other conditions, with findings expected in summer 2027.
A moment worth celebrating
A year ago, few people in Washington had heard of any form of myositis. Today, 54 Members of Congress have put their names behind our veterans with IBM. That is real progress, and it was earned by this community.
There is more work ahead, but I have never been more hopeful about where this effort is headed. Thank you for everything you have done to get us here.
Never forget: When we come together as a TMA community, we can accomplish so much!
Learn More
- Bilirakis Leads Bipartisan, Bicameral Effort to Expand Access to Benefits for Veterans with Rare Muscle Disease
- Baldwin Leads Effort to Expand Access to Benefits for Veterans with Rare Muscle Disease
The 54 Members who signed, by state
| State | Members of Congress |
| Alabama | Rep. Terri Sewell |
| Arizona | Rep. Yassamin Ansari, Rep. Adelita Grijalva |
| Arkansas | Rep. French Hill |
| California | Rep. Mike Thompson, Rep. Jared Huffman, Rep. Doris Matsui, Rep. Zoe Lofgren, Rep. Jimmy Panetta, Rep. Sydney Kamlager-Dove |
| Colorado | Rep. Jeff Hurd |
| Delaware | Rep. Sarah McBride |
| Florida | Rep. Gus Bilirakis, Rep. Anna Paulina Luna, Rep. Aaron Bean, Rep. María Elvira Salazar |
| Georgia | Rep. Rich McCormick, Rep. Clay Fuller, Rep. Hank Johnson, Rep. Sanford Bishop, Rep. Lucy McBath |
| Hawaii | Rep. Jill Tokuda |
| Illinois | Rep. Mike Quigley, Rep. Eric Sorensen |
| Indiana | Rep. Jim Baird, Rep. André Carson |
| Louisiana | Rep. Cleo Fields |
| Maryland | Rep. Sarah Elfreth, Rep. Jamie Raskin |
| Massachusetts | Rep. James McGovern, Rep. Stephen Lynch |
| New Jersey | Rep. Bonnie Watson Coleman, Rep. Josh Gottheimer |
| New Mexico | Rep. Melanie Stansbury, Rep. Gabe Vasquez, Rep. Teresa Leger Fernández |
| New York | Rep. Nicole Malliotakis, Rep. Michael Lawler, Rep. Thomas Suozzi, Rep. Yvette Clarke |
| North Carolina | Rep. Donald Davis, Rep. Valerie Foushee |
| Ohio | Rep. Joyce Beatty, Rep. Greg Landsman |
| Pennsylvania | Rep. Brian Fitzpatrick |
| South Carolina | Rep. Ralph Norman |
| Texas | Rep. Jake Ellzey, Rep. August Pfluger, Rep. Sylvia Garcia |
| Virginia | Rep. Eugene Vindman |
| Washington | Rep. Emily Randall |
| West Virginia | Rep. Carol Miller |
| Wisconsin | Sen. Tammy Baldwin, Rep. Derrick Van Orden |
Thank you to the leadership at TMA, the investigative reporters who continue to report and raise awareness, the Congressmen and Congresswomen who signed the DC letter, and all the impacted veterans and their friends and family who emailed, called, and signed action alerts.