We Can All Play an Important Role in Rare Disease Advocacy

Samuel Kirton avatar

by Samuel Kirton |

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Did you ever play Pac-Man? The bright yellow Pac-Man would wander through the maze, happily munching down the blinking dots.

That’s how I feel about my energy levels as a pulmonary fibrosis advocate. I pursue advocacy with a passion fed by all the opportunities that arise — my own blinking dots.

In the game, Pac-Man occasionally encounters a ghost and loses a life. This kind of setback occurs for me when I lay out a substantive case, but others decide not to support my cause. When this happens, I pause, take a breath, dust myself off, and remind myself that I play a small but necessary role in advocacy, and my efforts still make a difference.

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Advocacy at the grassroots level

Advocacy efforts continue year-round in the rare disease community. Organizations such as the Pulmonary Fibrosis Foundation (PFF) and the American Heart Association lead many of these efforts.

One goal of advocacy is to ensure patients have medical coverage and insurance protections. Another is to hasten approval of various therapies by the U.S. Food and Drug Administration. This type of advocacy proved effective when the Right to Try Act was signed into law in 2018, allowing certain patients with life-threatening conditions to access unapproved treatments.

Many advocates are currently gearing up for the next federal government budget cycle, which begins on Oct. 1 and funds all departments and organizations within the federal government.

One component of the Department of Defense’s budget is especially important to rare disease communities. The Congressionally Directed Medical Research Programs (CDMRP) was created in 1992 to conduct biomedical research that would benefit both the military and the American public. Specific research programs are not added permanently, but must be approved or renewed annually by Congress in preparing the year’s budget. Advocacy efforts are key to ensuring certain programs will be included.

Every year, the PFF sponsors a Hill Day to reach out to Congress members and their staff. Advocates may include patients, caregivers, family, friends, or anyone affected by pulmonary fibrosis. They are prepared for meetings through a series of training presentations, though in recent years, these meetings have been virtual.

Advocacy efforts do make a difference. For instance, the National Ataxia Foundation and Friedreich’s Ataxia Research Alliance worked together through two federal budget cycles to add Friedreich’s ataxia to the Peer Reviewed Medical Research Program (PRMRP) for fiscal year 22.

Find your advocacy niche

There are many opportunities to get involved. For example, you can work with the PFF to send emails to elected officials concerning issues relevant to those with pulmonary fibrosis. You can participate in office calls with elected officials and their staff. While many of these meetings are currently virtual, they are still effective. Your voice makes an impact when you share your lived experience.

One of my advocacy passions is serving as a consumer peer reviewer for the PRMRP. In this role, I’m not representing myself, but all of those affected by pulmonary fibrosis. It’s been my experience that the scientists evaluating proposals have a genuine interest in the peer reviewer’s perspective.

Not every advocacy effort is successful. We may face roadblocks, but tomorrow is a new day, and another opportunity awaits. Our individual roles may be small, but they’re all important. For me, advocacy is simply another way to 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.

Comments

Karen Carns avatar

Karen Carns

Sam,
Once again you hit the nail on the head, but first...........Pac Man! When my children were little and Pac Man was our first electronic game, they would beat me every time. I figured it was because their fingers were faster than mine, and maybe my arthritis was already affecting me and I did not realize it.

Anyhow, kudos on another good article and it brings the thought that it is not how much (quantity) we do/bring in life but the effect (quality) of what we do that brings not only satisfaction to us, but help to others. Makes me want to reevaluate some of the volunteer things that I do at this time, which is nothing like what I did prior to Jim's diagnosis and transplants.

Keep up the good work and hope to meet you and Susan in October in DC.

Be well, my friend.

Reply
Samuel Kirton avatar

Samuel Kirton

Karen,

Thanks for reading this column and your comments. Your Pac-Man memory made me smile. I also completely understand the comment regarding the quantity/quality dilemma that affects many volunteers. It is a real thing.

The PFF Walk in DC is on our calendar!

Sam ...

Reply
Bob Holman avatar

Bob Holman

I am newly diagnosed. Thank you for your article and comment. How can I find out more about the PFF Walk (date, etc.)?

Reply
Samuel Kirton avatar

Samuel Kirton

Bob,

Thanks for reading my column and for your interest in advocacy. You can learn more about the PFF Walk including cities and dates by visiting the PFF website.

Sam ...

Reply

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