Fight for better quality of life with PH by exercising your right to vote
Voting is an opportunity to advocate for the rare disease community
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If you’re in the United States, you probably know there’s an election happening on Nov. 3. Local, state, and federal candidates are all vying for elected office with big ideas on why they should serve and represent their constituents next term. You might even be annoyed by all the candidate appeals and advertisements bombarding the airways, your social feeds, and your phone.
While that’s relatable, I’d like to offer this public service announcement on why exercising our right to vote matters, particularly to the pulmonary hypertension (PH) and broader rare and chronic illness communities.
Advocating in Congress
Earlier this year, I participated in an advocacy day in Washington, D.C. The Pulmonary Hypertension Association brought together patients, caregivers, and medical professionals to meet with lawmakers from the House of Representatives and Senate to garner support for policies that would improve the lives of people with PH.
One of the priority bills was the Supplemental Oxygen Access Reform (SOAR) Act, legislation that would help make it easier for patients to get the oxygen therapy, supplies, and equipment appropriate for their diagnosis and treatment plan. Accessing the type of supplemental oxygen that’s right for you is the difference between being able to leave the house to go grocery shopping or enjoy a meal at a restaurant and being stuck at home with limited options. When you don’t have what you need to manage your diagnosis, the world can feel a lot smaller than it should be, which can negatively affect your outlook on life. Advocating for federal legislation is all about fighting for a better quality of life!
While advocating, I wore portable oxygen to ensure I didn’t become too short of breath and could maintain my energy levels as I moved from one congressional office to another throughout the advocacy day. I’ve used supplemental oxygen since before my PH diagnosis, when I first started to experience swings in my oxygen levels in 2016. I was proud to share my story with legislative staff from both political parties and discuss broader healthcare funding and affordability issues affecting millions of people across the country. It also felt like a bit of a homecoming, as I had been working in the House of Representatives when I was diagnosed with PH.
The 2-year turnover
A congressional term lasts two years, divided into two annual sessions. Representatives from 435 congressional districts stand for election every two years, while senators are up for election every six years. While federal lawmakers can have productive legislative sessions, it often takes multiple sessions over time for a bill to successfully move through the legislative process and become law.
Sometimes lawmakers who champion legislation during one congressional term don’t serve in the next Congress, requiring advocates to restart the clock and regain the progress they’d achieved. The SOAR Act has been introduced in multiple sessions, gaining more and more steam each time. The current legislation in the House has 69 co-sponsors from both sides of the aisle. Folks who want to advocate for the SOAR Act can reach out to their members of Congress to see whether they’re supporting the legislation this year and whether they would continue to support it when the new Congress gavels in next year.
As a chronically ill person who always has healthcare affordability top of mind, I try to stay attuned to the health policy and medical research issues that come before Congress each session. Lawmakers’ decisions can affect the pricing of medical procedures and prescriptions, what health insurance companies charge, and the amount of federal dollars appropriated to scientific research that can lead to breakthroughs and cures for different diseases.
In 2025, Congress passed legislation making significant changes to Medicaid, among other federal programs, that will take effect in 2027. Whenever there are shifts in healthcare policy, those of us who depend on access to affordable insurance, specialized medications, medical equipment, and experienced healthcare professionals can’t help but feel anxious about potential disruptions in the quality or continuity of our care.
A great time to talk to your representative
Congress goes on recess in the weeks before Election Day, which means members are in their home districts right now, talking with their constituents about why they should be trusted to serve another two-year term. If you’ve never reached out or talked to your members of Congress, there is no time like the present. You could even ask them about the SOAR Act.
I am eager to see what the next Congress will look like and to advocate on behalf of the PH community again. And that begins with exercising my right to vote.
Follow Mike Naple on X @mnaple or Bluesky @mnaple.bksy.social.
Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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