Policy & Advocacy

Pulmonary Fibrosis Advocacy

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. Because of advocacy efforts, public funding for pulmonary fibrosis research has steadily increased in recent years. Advocating with elected officials and other policy makers is an important way to improve the lives of people living with pulmonary fibrosis.

Supplemental Oxygen Access Reform (SOAR) Act

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 will make the following changes to improve oxygen access:

  • Change how Medicare pays for liquid oxygen, so that access to liquid oxygen increases throughout the country. Check out our video here on why liquid oxygen is so important for many patients with pulmonary fibrosis!

  • 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 patient protections through a Patients’ Bill of Rights

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. Click here to ask your members of Congress to cosponsor the SOAR Act.

National Heart, Lung, and Blood Institute

The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), provides funds that are crucial to advancing pulmonary fibrosis research. For example, the NHLBI has funded research into the importance of pulmonary rehabilitation for people with pulmonary fibrosis. Additionally, the NHLBI has funded basic and translational research that led to the approval of two drugs to treat certain types of pulmonary fibrosis. The PFF advocates for continued funding for PF research through the NHLBI.

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Peer Reviewed Medical Research Program

The Peer Reviewed Medical Research Program (PRMRP) within the Department of Defense is another important source of funding for PF research. Over the past two fiscal years, $18.4 million of PF research has been funded through the PRMRP. PF has been an eligible topic in the PRMRP since Fiscal Year 2015. The PRMRP is part of the Congressionally Directed Medical Research Programs (CDMRP) within the Department of Defense. The CDMRP was designed to be more adaptable to urgent needs than traditional federal biomedical research organizations and funds high-risk, high-reward research aimed at a specific problem. The PFF advocates for PF to remain as an eligible topic in the PRMRP each year.
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Join the PFF Advocates!

Members of the PFF Advocates contact and meet with their members of Congress to advocate for issues of importance to the community. Your participation is key to amplifying the voice of the pulmonary fibrosis community in policy decisions! Learn more and join the PFF Advocates.