While neither I nor anyone else in my family have CF, there are a lot of important people in my life who do, as I have had the privilege of providing care to adults with CF for over ten years. These years have been filled with joys and triumphs as well as sorrows and failures, but above all, it has been a tremendous honor to be a part of the lives of so many different people with cystic fibrosis. 

In February, I had a new experience as a CF physician — that of a CF advocate. I had the chance to meet with staffers of several members of Congress, including Suzanne Bonamici, my own representative in Oregon’s 1st Congressional District. In these meetings, my colleagues and I were able to express how important federal funding and resources for Medicaid, the NIH, and the FDA are to ensuring access to care and advancing critical research that allows us to deliver life-changing treatments and care to people with CF. We were able to share the stories of patients from the communities these members of Congress represent who were thriving while living with CF, thanks in large part to their access to care, results of NIH-funded research, educational provisions, and other federally funded programs, which helped them overcome obstacles that are inevitable when living with CF.

This opportunity to advocate with other CF physicians was possible thanks to many different people who channeled their passion for caring for and advocating for people with CF — as well as a great deal of time and logistical work — into the Program for Adult Care Excellence (PACE). Late last summer, I helped plan the first in-person meeting for PACE at the CF Foundation’s office in Bethesda, Maryland. PACE is a Foundation-sponsored program to promote advanced training in adult CF care. It also provides a means for networking and building relationships between care centers and the broader CF community. 

In the weeks prior to the event, discussions in Congress and the new administration inspired me to make the most of this opportunity, as some of these proposals could significantly impact access to care for large numbers of people with CF. In addition, changes to federal agencies, such as the NIH and the FDA, could make it difficult to develop new treatments and make them available for people with CF. 

The day of the event, we had a brief orientation and then broke out into groups to meet with staffers from each of the congressional offices representing us or the districts of our care centers. For physicians with a scientific background, single anecdotes are considered less compelling evidence to support a claim than quantitative results, so at first, we made our arguments based on numbers and figures of people with CF on Medicaid, NIH funds supporting CF research, etc. However, even with the staffers who were sympathetic to our cause, it was clear from their feedback, both in words and in body language, that such arguments were not particularly effective in the current political arena. 

However, things seemed to change when we began to share stories of people with CF who had had life-changing responses to new therapies which had been developed from lessons learned through NIH-sponsored research and under thoughtful FDA decisions — including the approval of modulators based on in-vitro data. We also shared stories of the importance of access to such treatments and the detrimental effects of lapses to coverage.

While I’m not sure if the numbers we shared lasted in the memory of those we met with, I am quite confident that the stories we told made an impression and will act to influence policy and strategy in our ever-evolving environment of healthcare and research.

Being a part of that influence was a deeply gratifying experience for me, and I found during our debrief that this was universally experienced by the other physicians. 

While the CF Foundation has held March on the Hill for people with CF and their families for many years, this was the first in-person advocacy event just for physicians. This made our meetings perhaps a bit different than March on the Hill, as we all had scores of stories to share. While these were not firsthand experiences, the deep connection a passionate physician has toward their patients indeed does make us part of the story.

Although this may have been my first advocacy event, it certainly won’t be my last. This gave me a constructive and positive outlet to channel my passion for people with CF — and a completely new way for me to promote access to care, as well as continued research funding and infrastructure. A little action goes a long way to combat the feeling of being powerless in the midst of change. I encourage you to do the same. 

Interested in sharing your story? The CF Community Blog wants to hear from you.