Partner with PFF through advocacy and education to benefit PF community
The third pillar of 5-year strategic plan focuses on improving patients' lives
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What do we want? A therapy and a cure!
When do we want it? Now!
Call-and-response is a tactic often used in protests. Raising many voices together to deliver the same message is a powerful force. Together as a community, we can deliver that message.
The Pulmonary Fibrosis Foundation‘s (PFF) 2025 strategic plan, The PFF is Me, is a road map through 2030. The plan comprises strategic pillars that are mutually supportive. The first pillar focuses on accelerating research into pulmonary fibrosis (PF), while the second focuses on expanding access to expert care. The third pillar, “Improve the Lives of Patients Right Now,” is an opportunity to get involved and help deliver the important messages of PF.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it was the formal beginning of my journey. My diagnosis gave a name to the symptoms I had been experiencing: the shortness of breath, a nonproductive but persistent cough, and clubbed fingers. In 2019, I was prescribed supplemental oxygen, and in July 2021, I received a lifesaving bilateral lung transplant.
When I first read the strategic plan, I could immediately relate to the third pillar. If I had to summarize its two main initiatives, advocacy and educational resources would come to mind.
I had the opportunity to interview two of PFF’s leaders, Kate Gates and Joyce Lee, MD, via Zoom. Gates is the organization’s chief operating officer. Lee is its senior medical adviser for research and healthcare quality, and also serves as a professor of pulmonary sciences and critical care medicine and the director of the interstitial lung disease program at the University of Colorado School of Medicine. Both provided valuable insight into PFF advocacy and educational resources.
A call to advocacy
The PFF’s year-round advocacy work is a partnership not only with PF community members, but also with other disease advocacy organizations. Each year, the organization hosts Hill Day, a chance for members to share their stories with Congress to support legislation or funding requests. This year’s Hill Day is March 4.
The Supplemental Oxygen Access Reform (SOAR) Act, if passed, will improve access to supplemental oxygen. Currently, patients may not be able to access the supplemental oxygen they need. Limitations on the number of portable oxygen tanks a patient can have may serve as a leash, keeping them close to home or isolated there. Additionally, access to products such as liquid oxygen, which is more portable and provides longer support in a smaller container, is generally not available.
While the SOAR Act would reform Medicare, stabilizing the supplemental oxygen market, it would also benefit patients with private insurance.
Gates explained, “We have to get Congress to go through the steps in order to get the bill passed. We made significant progress when Congress recently held a hearing to discuss the SOAR Act. We need Congress to get it across the finish line. And so, on PFF Hill Day, we need as many people as possible to join us, to meet with their members of Congress, tell them why the SOAR Act is so important, and make good progress on getting it passed this year.”
Another initiative aims to solicit continued support for including PF as a topic area within the Congressionally Directed Medical Research Programs. Gates told me the PFF must seek annual funding that supports research into both causes of PF and potential therapies for it.
Anyone interested must register for Hill Day by Feb. 18. It’s an opportunity to engage with members of Congress. Take it!
The need for information about PF
The second initiative, educational resources, helped establish my trust in the PFF. Being newly diagnosed with a disease I had never heard of, I immediately began searching for information and found accurate, credible info on the PFF’s website.
The initiative focuses on educating not only patients and caregivers, but also the medical community. Lee said it recognizes the need to “educate pulmonologists in the community and primary care physicians,” which can help reduce delays in diagnosis.
“I think increased disease awareness and understanding from medical school to residency, to fellowship, all the way through practicing pulmonologists and internists … is incredibly, incredibly important,” she added.
The educational resources curated by the PFF provide a reliable source of information for our community as well as materials you can share with medical professionals. I share information from the strategic plan to help you make every breath count.
In-person tickets for Broadway Belts for PFF! on March 9 are sold out. You can still attend the event virtually at 8 p.m. EST.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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