Why I do rare disease awareness and advocacy work on Capitol Hill

In the 1939 Frank Capra film “Mr. Smith Goes to Washington,” a naive young man played by Jimmy Stewart is appointed to fill a vacant seat in the U.S. Senate. He was determined to make a difference and perhaps change the world. Faced with the challenges of the political arena, he remained steadfast to his cause. His persistence paid off.

The pulmonary fibrosis and rare disease communities are our own best advocates, and our persistence will pay off.

Personally, I have been advocating for the rare disease community on Capitol Hill for many years — long before I was diagnosed with idiopathic pulmonary fibrosis (IPF). In March 2021, The Central Virginian ran a story titled “Lobbying for a cure” about my advocacy efforts on behalf of the Pulmonary Fibrosis Foundation (PFF). A fellow PFF ambassador, Melissa King, created what I see as a modern-day interpretation of the movie character portrayed by Stewart. Hence, Mineral Man was born.

Mineral man goes to Washington. (Art by Melissa King)

Advocacy matters

Advocacy can be described as building support for something important to you. Most of us have been involved in advocacy since we began interacting with others. Reach back into your memories of the days of your youth. You and your friends are trying to decide what to do on a Saturday afternoon. Your idea is to play soccer while someone else wants to play [insert other idea here]. You make the case for playing soccer with your friends. That was advocacy. You were developing support for something important to you.

Living with a rare disease such as IPF, whether as a patient, caregiver, or someone in another role but impacted by it, provides our call to action. Our lived experience is powerful especially when it is conveyed in our own voice. It can be spoken or written.

Advocacy is best in larger numbers. Much like building the case for soccer, the more people supporting your goal, the easier it is to realize it. Those willing to work together on an advocacy issue create a formidable force.

There is one more critical point, and it is the most important one: Advocacy is my responsibility. I do not want a future generation to experience IPF or PF without a cure.

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What can you do?

You can use your voice. Many of the rare disease organizations have advocacy networks you can join. The PFF Advocates address issues important to the PF community. This may be in the form of speaking with members of Congress or their staff, interacting with a government agency about a rare disease, or engaging in a letter-writing campaign.

Advocacy is important, especially for our elected representatives, who vote on funding research to further understand a rare disease, develop a therapy, and find a cure. Each year, the PFF advocates for continued funding for the work of the National Heart, Lung, and Blood Institute, which funds research that is critical to furthering understanding of PF.

During their meetings with members of Congress and staff, the PFF must advocate annually for PF to remain a topic area for the Peer Reviewed Medical Research Program (PRMRP), which is part of Congressionally Directed Medical Research Programs. In Fiscal Year 2022, the PRMRP funded research supporting approximately 50 topic areas.

This year, on Feb. 22, I will be part of the PFF Hill Day cadre meeting with congressional offices. While I will be a constituent of the offices I meet with, I will also be the voice of the PF community sharing my lived experience. Advocacy matters, and it is another way I can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.