Become an Advocate
Get involved with the PFF’s advocacy efforts
The Pulmonary Fibrosis Foundation (PFF) advocates with public officials on issues that affect pulmonary fibrosis 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. Use this form to join the PFF Advocates!
Contact your members of Congress to pass supplemental oxygen reform
The Foundation is thrilled that the bipartisan Supplemental Oxygen Access Reform (SOAR) Act has been introduced in both the U.S. House (H.R.7829) and U.S. Senate (S.3821). This marks a significant step forward in our mission to improve access to supplemental oxygen for Medicare beneficiaries. The SOAR Act includes provisions to establish a patients' bill of rights and increase the availability of liquid oxygen around the country. Learn more about the Four Pillars for Supplemental Oxygen Reform that provide the basis of the SOAR Act.
But there is still more work to be done. We need additional cosponsors in the U.S. Congress to ensure that the SOAR Act is voted on and becomes law. Use our form below to ask your members of Congress to sign up as cosponsors for the SOAR Act.
We need your voice for PFF Hill Day!
Do you want to take your pulmonary fibrosis 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 patient’s 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.
On March 6, 71 participants from 31 states participated in 95 congressional meetings for PFF Hill Day 2024. Thanks to our PFF Advocates, the day was a success. The PFF looks forward to having even more participants to move this legislative momentum forward. Sign up for the PFF’s advocacy alerts to be notified when the next PFF Hill Day is announced.
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.
Jamie Lederer
PFF Hill Day Participant
Nurse practitioner
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
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.
Find Your Members of Congress
Connecting with your elected officials is the key to effecting legislative change. Enter your information to find out who your members of Congress are. Your voice is important. Connect with your government officials so that you are heard!