By Robert Saint Laurent, Responsum Editor
Those impacted by IPF know that raising disease awareness is critical to advancing research and improving quality of life for those living with the devastating lung disease.
According to PFF, idiopathic pulmonary fibrosis affects one in 200 US adults over the age of 65. Roughly 100,000 Americans are currently living with IPF, with 50,000 new diagnoses and an estimated 40,000 deaths—rivaling breast cancer—occurring annually. All of this is associated with a large economic and healthcare burden, as respiratory care comprised nearly 37% of all healthcare costs in 2011.* Yet despite these startling statistics, IPF hasn’t received the fanfare and funding of breast cancer and other chronic diseases.
To help shine a light on this issue, PFF has designated September Pulmonary Fibrosis Awareness Month and encourages people to get engaged in spreading the word. Reaching 915,000 people through social media outlets in 2017, PFF is aiming for one million in 2018. To help attain this goal, the organization provides an advocacy planning guide that includes ideas such as the following (quick links to these resources can be found here):
To the last point, on September 13, 2017, US Representative Erik Paulsen (R-MN-3) introduced House Resolution 518 – “Expressing Support for the Designation of September as ‘Pulmonary Fibrosis Awareness Month.’” The bill was referred to the House Energy and Commerce Subcommittee on Health on September 15, 2017 where it has been awaiting House approval. As of September 2018, 14 additional legislators representing 11 additional states (besides original cosponsor Rep. Steve Cohen, D-TN-9) have signed on to the bipartisan resolution.
(On September 28, 2017, related bill S.Res.276 was approved in the Senate.)
In addition to the grassroots actions above, it’s important the PF community pressure representatives to lend their support and move this bill through Congress.
“Every mention of [pulmonary fibrosis] moves us one step closer to a patient receiving a timely and accurate diagnosis, finding essential support, being heard by legislators, and ultimately finding a cure.” - PFF
*Raimundo, K., Chang, E., Broder, M.S., Alexander, K., Zazzali, J., & Swigris, J.J. (2016). Clinical and Economic Burden of Idiopathic Pulmonary Fibrosis: A Retrospective Cohort Study. BMC Pulmonary Medicine, 16(2).