To my IPF community: Now is the time for legislative advocacy

Watching the U.S. elections last week was an exercise in mental health awareness, as is any activity in which the outcome is greeted with mixed reactions and emotions. The refrain from Carly Simon’s 1971 song “Anticipation” came to mind as I was laying out this column: “Anticipation, anticipation/ Is making me late/ Is keeping me waiting.”

For the rare disease community, any changes in the organizations and agencies we rely on for support are often accompanied by some amount of anxiety. What can you and I do? First, realize that we’re not powerless. Legislative advocacy is a nonpartisan activity. We need the support of every single member of the U.S. Congress.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I embarked on a steep learning curve to learn about this disease. As many people with rare conditions know, the world around us isn’t aware of what we face on our journey.

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Building and maintaining relationships

This column is a call to action — not only for the IPF community, but also for the rare disease community. Many elected officials can use this time of transition to begin forging relationships with their offices. Members of Congress whose terms begins in January are starting to establish transitional offices and teams. For many, their election is their first political office. Now is the perfect time to open a dialogue with them.

You’ll want to establish contact with the legislator’s health policy adviser. In some cases, this person will also be new to Capitol Hill. Offer to meet with them either in person or via Zoom to discuss health topics important to the IPF community. Some examples of topics include the Supplemental Oxygen Access Reform Act of 2024 or the continued inclusion of pulmonary fibrosis as part of the Peer Reviewed Medical Research Program under the Congressionally Directed Medical Research Programs.

In my congressional district here in Virginia, I have a newly elected representative. My current representative is leaving her role in the House to run for governor next year. I have an opportunity to build a relationship with the new member’s office before he’s sworn in.

One of my two senators was up for reelection and was declared the winner last Tuesday evening. For reelected incumbents, reach out to their health policy adviser to congratulate them on a successful campaign. Let the adviser know you look forward to continuing to work with them as they serve in the 119th Congress, whose term begins in January 2025 and ends in January 2027.

For those who had no changes in their congresspeople, reach out to current health policy adviser to tell them that you look forward to working with their office in the future. It’s also a good time to remind them of matters that are important to you.

If you need talking points, reach out to advocacy organizations such as the Pulmonary Fibrosis Foundation. We can all use our voices to advance the legislative needs of this community. It’s how we 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.