In a win for the pulmonary fibrosis community, the U.S. House of Representatives Appropriations Committee included language in a fiscal year 2021 Appropriations report highlighting the need for pulmonary fibrosis (PF) research. This language encourages the National Heart, Lung, and Blood Institute (NHLBI) at the National Institutes of Health (NIH) to focus on pulmonary fibrosis research. You can read the PF-specific language on page 99 of the report here.

The inclusion of this language in the funding report did not happen by accident. On March 10, 2020, Pulmonary Fibrosis Foundation (PFF) Advocates from around the country asked their members of Congress to spur PF research by including this language in their funding reports. We are grateful to the PFF Advocates who ensured that PF research would be in the spotlight in this year’s report.

Funding for Pulmonary Fibrosis Research

The National Institutes of Health is the largest public funder of medical research in the world, with $41.68 billion of funding in fiscal year 2020. The National Heart, Lung and Blood Institute is the section of the NIH that is responsible for lung-related research.

NHLBI provides funds that are critical to advancing pulmonary fibrosis research. For example, NHLBI has funded research into the importance of pulmonary rehabilitation for people with pulmonary fibrosis. NHLBI grants also helped fund the basic research that led to the identification of the two drugs that are approved for pulmonary fibrosis. Before private companies can start testing a treatment in clinical trials, there has to be research showing that the treatment has a scientific basis for working. Companies cannot take the risk of investing in such early stage research, so it falls to NIH and other sources to fill this gap.  It can take researchers years and millions of dollars to get to the point that a private company can test a treatment. Without funding from NHLBI and similar public institutions, the basic research needed to get to the clinical trial phase would never happen.   

Your Voice Counts

Through the appropriations process, Congress decides how much funding the federal government, including agencies like the NIH and NHLBI, get for the year. Because NHLBI depends on Congress for its funding, it pays attention to what Congress prioritizes in these appropriations reports. NHLBI is then responsible for determining how much money goes to each disease area. This is why PFF Advocates ask their members of Congress to include the importance of PF research in their appropriations reports.

We need more Advocates to join us in urging members of Congress to take these types of important actions. Please join the PFF Advocates and learn more about the PFF’s advocacy work.