There is something powerful about patient advocates coming together with a shared purpose. On September 15th, Alpha-1 Foundation (A1F) advocates brought their Alpha-1 journeys and passion directly to Capitol Hill, raising their voices on behalf of the Alpha-1 community.
In Washington, D.C., advocates met with congressional offices to build support for two important pieces of legislation: H.R. 2343, the John W. Walsh (JWW) Alpha-1 Home Infusion Act, and the Supplemental Oxygen Access Reform (SOAR) Act, H.R. 2902/S. 1406.
Thirty-five advocates gathered for the advocacy dinner, and 30 went to Capitol Hill, where they participated in more than 70 meetings with House and Senate offices. Each conversation was an opportunity to educate policymakers about Alpha-1 Antitrypsin Deficiency (Alpha-1), share personal experiences, build relationships, and demonstrate what these policy changes could mean for patients and their families.
One of the day’s legislative priorities was the JWW Act. The legislation would allow eligible Medicare beneficiaries with Alpha-1 to access augmentation therapy at home, addressing barriers to receiving treatment in the home setting.
Those efforts helped build momentum. Following the event, we gained two new co-sponsors for the JWW Act, a tangible sign that our conversations on Capitol Hill helped build support. Every meeting, personal story, and follow-up can move an issue forward. When a lawmaker chooses to co-sponsor legislation, it signals growing support and brings us one step closer to policy change.
Advocates also focused on the SOAR Act, a bipartisan bill aimed at addressing barriers to supplemental oxygen access for Medicare beneficiaries. The legislation seeks to improve access to appropriate oxygen equipment and respiratory care while strengthening patient protections.
For people who rely on supplemental oxygen, this is more than a policy issue. More than 1.5 million people in the United States rely on supplemental oxygen, yet patients continue to face challenges accessing portable and high-flow options that can help them remain active and independent.
Our advocates brought those realities directly into congressional offices. They put a human face on policy, showing lawmakers and staff what access, independence, and quality of life mean for Alpha-1 patients and families, and what can happen when the healthcare system falls short.
Our efforts are also part of a larger national movement. Throughout 2026, more than 300 patients, caregivers, family members, and community advocates have supported the SOAR Act, engaging congressional lawmakers and staff through hundreds of meetings. A1F advocates proudly added their voices to that effort.
But some of the most important moments of the day cannot be measured by meetings or co-sponsors. They happen when an advocate sits across from a congressional staff member and explains why an issue matters personally. When someone shares their story for the first time or when policymakers ask questions, relationships begin to form, and advocates realize their voices can help influence change.
We left Washington encouraged by what we accomplished and energized by the work ahead. Our advocacy does not end when we leave Capitol Hill.
Thank you to everyone who traveled, participated in meetings, shared a personal story, attended the dinner, helped prepare advocates, or supported the effort behind the scenes. We are reminded that change does not happen on its own. It happens when people show up, speak out, and make their voices heard.
Together, these continued advocacy efforts are making a difference. We are excited to have reached 60 co-sponsors, surpassing our total from the last Congress and demonstrating the growing momentum behind the JWW Act.
Alphas Can Take Action From Home
You do not have to be on Capitol Hill to advocate for the Alpha-1 community.
Support the John W. Walsh Alpha-1 Home Infusion Act (H.R. 2343): Ask your representative to co-sponsor legislation that would help eligible Medicare beneficiaries with Alpha-1 access augmentation therapy at home. Take action on the JWW Act.
Support the SOAR Act (H.R. 2902/S. 1406): Ask your members of Congress to support improved access to appropriate supplemental oxygen, respiratory therapist services, and protections for oxygen users. Take action on the SOAR Act.
