This Rare Disease Day, make your voice heard with elected officials

Here in the U.S., there is an effort underway to reduce the size of the government. You may not know that, in addition to writing this column, I’m also a senior moderator for the Pulmonary Fibrosis News Forums. I recently started a discussion about the government downsizing and asked:

• Do you feel this has impacted your care to date?
• What concerns do you have about closing or reducing the size of agencies that provide research, funding, or oversight of your care?

I share this here as a segue into discussing topics relevant to Rare Disease Day this Friday, Feb. 28. Rare Disease Day is just one opportunity to share your response to these questions with your elected officials.

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November 12, 2024 Columns by Samuel Kirton

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

Advocacy for the win

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it was an introduction to a disease I knew nothing about. Absorbing the diagnosis and its potential impact left me with a view of my future that was incongruous with what I’d always imagined.

I’d never been one to sit back and wait for someone else to figure out a solution. I was a fixer. So, at an appointment soon after my diagnosis, I asked what I could do. My care team brought in their research lead, and I left with consent forms for a research program. It would be the first of many I’d participate in. That day, I became aware of the need for more IPF research, which required funding.

As I shared my diagnosis with an expanding circle of people, the term “idiopathic pulmonary fibrosis” often provoked a quizzical expression. IPF was unknown to so many. I realized I needed to use my voice. That’s where you come in.

A call to action

This week’s Rare Disease Day and next week’s Pulmonary Fibrosis Foundation (PFF) Hill Day on March 5 present opportunities to make your voice heard.

You can reach out to elected officials to discuss issues that are important to you at any time of the year, but during these structured events, your voice can join others. The voice of one is important, but the voices of many are more impactful. This includes patients, caregivers, and anyone else who can tell legislators about the impact of this disease.

Each of us has a unique story, and there’s no time more important than now to share your responses to the two questions I posed above. Our healthcare should have bipartisan support. Researchers, scientists, and their institutions are facing hard decisions with some of these streamlining efforts. For many of them, their work is their passion. That work — research — costs money. The PFF, for example, raises money each year to support education, awareness, and research programs. The federal government has historically funded research initiatives through agencies like the National Institutes of Health and programs like Congressionally Directed Medical Research Programs.

I received a bilateral lung transplant in July 2021. My passion for a cure and my desire for more effective IPF therapies didn’t change because of my donor’s gift. If anything, my pursuit intensified. I want a future for my children and grandchildren where this disease is spoken about only in past tense.

The people making decisions about streamlining government work for you. Whether you cast a vote for them or against them, you are their constituent. Their role is to be the voice of the constituents they serve. Advocate for your views on Rare Disease Day and PFF Hill Day. I’ll be sharing my voice — it’s how 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.