March Madness isn’t just basketball — it’s also rare disease advocacy

Those in the rare disease community have been busy meeting with lawmakers

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by Samuel Kirton |

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One of the most certain parts of our lives is the order of the calendar. “Thirty days has September,/ April, June, and November,/ All the rest have thirty-one,/ Save February at twenty-eight,/ But leap year, coming once in four,/ February then has one day more.”

Some might call this a mnemonic, while others might refer to it as rhyming verse or a poem. It may have originated in the 15th century, while other versions appeared in the 16th and 19th centuries.

Here in the United States, March is known for three consistent hallmarks. The winds in the early weeks of March herald the arrival of spring as the seasons begin to change. College basketball fans anxiously await the NCAA’s announcement of the 68 teams that will play in the popular tournament affectionately referred to as “March Madness.”

March has an additional meaning to me, as a person with a rare disease. While lawmakers typically expect the president’s annual budget proposal to be delivered in February, it often comes in March, which was the case this year. President Joe Biden released his administration’s $6.8 trillion budget proposal for Fiscal Year 2024 on March 9. When this happens, it’s a signal to the rare disease community to start persuading members of Congress to allocate funding to programs that pursue a better understanding of diseases, as well as new therapies and cures.

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The madness

When I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I had no idea where this new chapter in my life would lead, both immediately and in the long term. I had a good understanding of the rare disease community based on my knowledge of ataxia and the work of the National Ataxia Foundation (NAF). Ataxia is personal to me, because I have lost three stepsiblings to the disease.

After my diagnosis, I quickly learned that the time I devoted to year-round advocacy would increase, and each year during March, it more than doubles. Due to shortened appropriations deadlines on Capitol Hill this year, it truly was March Madness!

Each year, much like the November start to the competition among NCAA teams to be part of the final tournament, the rare disease organizations I work with begin meetings with congressional staff months before March. These communities began meeting with congressional staff in September to prepare for this month.

The road to budget madness

During the COVID-19 pandemic, meetings with congressional staff switched from in person to virtual, usually via Zoom. This actually allowed for broader participation by people who’d been unable to attend, either because they couldn’t travel to Washington, D.C., or they couldn’t afford the travel and lodging costs.

Since last fall, I’ve attended more than a dozen meetings with congressional staffers via Zoom to share my experiences as a family member of loved ones with ataxia and as a patient with IPF. One of my colleagues, Lori DePorter, who writes for Parkinson’s News Today, recently discovered the power of her own voice when she also met with congressional staffers. It makes an impact when people from the rare disease community share their experiences with these lawmakers and their staff.

The ask

During each of these meetings, we lay the groundwork for congressional support for specific budget items. Staffers not only get to hear our stories in our own words, but they also allow us to provide background material on our “ask.” (The ask includes the budget items we’re seeking funding for in the coming year.)

An example of an ask that’s common to both the NAF and the Pulmonary Fibrosis Foundation (PFF) is the continued inclusion of both diseases as a topic area of the Peer Reviewed Medical Research Program (PRMRP), which supports research to enhance the “health, care, and well-being of military service members, veterans, retirees, and their family members,” according to the Department of Defense (DOD).

The PRMRP is the program with the highest annual funding level under the DOD’s Congressionally Directed Medical Research Programs, which aim to foster new medical research. Both the PFF and the NAF must ask for the continued inclusion of their rare diseases in the research that’s funded under the PRMRP.

Getting back to March

Now that the president has released his budget proposal, rare disease organizations have been able to begin the frenzy of submitting appropriations requests to members of Congress. That’s when the madness begins. There’s generally a very short timeline for appropriations requests to be prepared and submitted. This year, for example, U.S. senators established a deadline of March 10. (In some cases, Senate offices allow appropriations requests to be submitted before the president’s budget presentation.)

House submission deadlines vary by topic and this year are spread out throughout March.

Now that those deadlines have passed, I can return to the NCAA’s March Madness. Happily, my Maryland Terrapins, seeded eighth in the South Region, beat their biggest rival, the ninth-seeded West Virginia Mountaineers, in a two-point nail-biter last Thursday. Sadly, they were then blown out by top-seeded Alabama on Saturday.

Preparing and submitting the asks to congressional offices, and then rooting for my Terrapins, both make for a good March — and it’s 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.


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