Be a PFF Advocate
Get involved with the PFF’s advocacy efforts
The Pulmonary Fibrosis Foundation (PFF) advocates with public officials on issues that affect pulmonary fibrosis (PF) patients and are of importance to the pulmonary fibrosis community at large. Advocating for the PF community ensures that elected officials understand the importance of federal funding for pulmonary fibrosis research and the need for reform to patients’ access to supplemental oxygen for Medicare beneficiaries. Because of advocacy efforts, public funding for pulmonary fibrosis research has steadily increased in recent years and the Supplemental Oxygen Access Reform (SOAR) Act has been introduced in Congress.
We need YOU to help to continue to move this legislative change forward. Keep reading to find out all of the ways that you can get involved!
Become a PFF Advocate
Members of the PFF Advocates regularly contact their members of Congress and their staffs and other officials to advocate for issues of importance to the community. As a member of the PFF Advocates, you will receive alerts when there is an important advocacy issue. The PFF will provide an easy online platform for reaching out to your members of Congress. You will also receive notification of the PFF’s annual Hill Day and of any other PFF advocacy events. Sign up on this form to join the PFF Advocates!
Tell Congress to protect pulmonary fibrosis research
Proposed cuts of 40% to the budget for National Institutes of Health (NIH) would have a severe and lasting impact on pulmonary fibrosis (PF) research. As a primary funder of PF research, the NIH provides over $120 million annually, supporting groundbreaking studies through grants awarded to universities, research institutes, and small businesses. A cap on research costs is a cap on progress, jeopardizing critical discoveries and putting patients’ lives at risk.
The NIH is the largest federal funder of PF-related research and awarded more than 200 grants in 2023 alone. These funds support essential research—from early investigations into new treatments to clinical trials that bring therapies to patients. The NIH has been instrumental in advancing PF knowledge, improving diagnostics, identifying risk factors, and developing treatment options.
Fueled by NIH research funding, the U.S. has become the global leader in PF research. Cutting this support threatens to diminish American leadership and undo years of progress. Without sustained investment, life-saving treatments will be delayed, leaving patients with fewer options and little hope for a cure.
Ask your members of Congress to act TODAY to stop cuts to research funding at the National Institutes of Health (NIH)!
Contact your members of Congress to pass supplemental oxygen reform
The Pulmonary Fibrosis Foundation has joined over 30 other advocacy organizations to support the Supplemental Oxygen Access Reform (SOAR) Act. The Foundation is thrilled that the bipartisan SOAR Act has been reintroduced in both the U.S. House (H.R. 2902) and U.S. Senate (S. 1406). This marks a significant step forward in our mission to improve access to supplemental oxygen for Medicare beneficiaries. The SOAR Act will make the following changes to improve oxygen access:
- Ensure supplemental oxygen is patient-centric by establishing patient protections through a Patients' Bill of Rights and changing "home oxygen" to "supplemental oxygen" so people requiring oxygen can live full lives outside their primary residences
- Change how Medicare pays for liquid oxygen, so that access to liquid oxygen increases throughout the country
- Add respiratory therapy services as part of the Medicare oxygen benefit, so that patients will learn how to use oxygen from a trained professional
- Establish national standardized documentation requirements to support claims for supplemental oxygen supplies to provide predictable and adequate reimbursement and to protect against fraud and abuse
Learn more about supplemental oxygen, the challenges patients on Medicare face in accessing supplemental oxygen, and what the SOAR Act will do to address these challenges in the Supplemental Oxygen Access Reform (SOAR) Act One Pager.
But there is still more work to be done. We need cosponsors in the U.S. Congress to sign on to the SOAR Act to ensure that this legislation becomes law. Use our form below to ask your members of Congress to sign on as cosponsors for the SOAR Act.
Patients, caregivers, healthcare providers: Share your experience with supplemental oxygen!
Many patients are unable to receive the oxygen equipment, supplies, and services that they need to maintain their health. The Pulmonary Fibrosis Foundation is currently advocating in favor of the Supplemental Oxygen Access Reform (SOAR) Act to improve Medicare patients’ ability to access the necessary and appropriate oxygen equipment, supplies, and services.
We are asking patients who use oxygen, patients who have used oxygen in the past, as well as their caregivers, family members, and healthcare providers, to share their stories of using supplemental oxygen. The PFF may use these stories to highlight the need for reform to how Medicare patients receive supplemental oxygen. Stories may be shared on social media, with government officials, or through other channels to demonstrate the benefits that the SOAR Act would have for the community.
We need your voice for PFF Hill Day!
Do you want to take your pulmonary fibrosis (PF) advocacy to the next level? Join us each spring for PFF Hill Day. During PFF Hill Day, you will meet with your legislators and congressional staff via Zoom to advocate for the pulmonary fibrosis community. You will have the opportunity to educate the congressional staff on pulmonary fibrosis, briefly share your experience as a part of the PF community, and provide an understanding on why we need their support on issues such as improving patients' access to supplemental oxygen and funding for PF research.
As a PFF Advocate, it is critical that members of Congress and their staff hear from you. We need elected officials to understand why it is so important for PF research to receive robust funding and why there needs to be improved access to supplemental oxygen.
This year, on March 5, 76 participants from 29 states participated in 108 congressional meetings for PFF Hill Day 2025. The PFF looks forward to having even more participants next year to move this legislative momentum forward.
Each of us has a voice and each one is important. We come from different
backgrounds, with varied experiences, and varied paths along the
journey of pulmonary fibrosis. Hill Day is one of the opportunities for
voices to unite and make a difference.
Marla Brady
PFF Hill Day Participant
Lost a loved one to pulmonary fibrosis
Participating in Hill Day is one of my favorite Pulmonary Fibrosis Foundation events. It is a unique opportunity to be able to meet with government officials to share the stories of those with pulmonary fibrosis and to encourage our congressional leaders to support research and legislative changes that can impact the lives of the patients I care for today and the patients I will care for in the future.
In 2016 I worked at the U.S. House of Representatives on Medicare issues. I met many people like us who are simply advocating to make Medicare better. The personal stories we tell about our journeys with pulmonary fibrosis MAKE a huge difference!
Tom Mayes
PFF Hill Day Participant
Lung transplant recipient
Find Your Members of Congress
Connecting with your elected officials is the key to effecting legislative change. Enter your information here to find out who your members of Congress are. Your voice is important. Connect with your government officials so that you are heard!
Five steps to meeting with your members of Congress
You can meet with your members of Congress and/or their staffs to advocate for issues that are important to the pulmonary fibrosis community. Here are five steps to schedule and conduct a visit.
- Find the contact information for your U.S. Representative and U.S. Senators using the “Find Your Member of Congress” form on this page (below).
- Contact your official’s office to request a meeting. The office may schedule you to meet with your member of Congress or with a member of their health staff. Be prepared to follow up – you may need to call a couple of times and be flexible with the date of your meeting, but persistence will pay off.
- Before the meeting, email advocacy@pulmonaryfibrosis.org to request the current “policy asks” for congressional offices and any one page “leave behinds” that you can email to your legislator or their health staff.
- During the meeting, remember to identify yourself as someone who lives in the official’s district or state and to share your story. Your personal connection is the most important reason for your advocacy! Limit your story to 1 – 2 minutes, the length of an “elevator pitch.”
- Within 24 hours of your meeting, send an email to thank them for their time. This is crucial to build relationships. Then plan when your next visit will be.