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.

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.

Advocating for Access to Supplemental Oxygen

In recent surveys, approximately 50% of patients have reported difficulty accessing the supplemental oxygen that they need.1 The PFF works with other patient advocacy organizations and professional associations to advocate for improved access to oxygen. The PFF also provides a Medicare Patients’ Oxygen Rights brochure to educate patients about their rights as Medicare recipients.

1 Jacobs SS et al. Patient Perceptions of the Adequacy of Supplemental Oxygen Therapy. Results of the American Thoracic Society Nursing Assembly Oxygen Working Group SurveyPatient Supplemental Oxygen Survey: Results of the American Thoracic Society (ATS) Nursing Assembly Oxygen Working Group. Annals of the American Thoracic Society. 15:24 - 32. 2018.

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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.