Policy & Advocacy
Pulmonary Fibrosis Advocacy
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.
Peer Reviewed Medical Research Program
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.
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.