As Mike Naple visited Capitol Hill in March, he marked his 10th anniversary of living with PH. Naple, a PHA board member, reflects on his experience and gives advice for first-time advocates.
When I participated in PHA’s Hill Day in March, it was a huge milestone in my journey living with pulmonary hypertension. I was diagnosed with PH in 2016, and at the time, I was working as a communications director on Capitol Hill. The Hill Day event became a full-circle moment for me because I was back in the buildings I used to work in, 10 years after my diagnosis.
In a previous job, I helped gun violence survivors share their stories with elected officials and advocate for stronger gun safety measures. For Hill Day, the roles were reversed. This was the first time I was advocating for myself in person and sharing my PH journey.
It was a special coincidence that my former nurse, Denise Lewis, was also in attendance that day. It weirdly felt like a homecoming because I was not only back to my old work environment, but also with my nurse from when I was diagnosed. During the meetings with legislative staffers, we shared part of our story to emphasize the connection between patients and their care team. This made the event feel really special.
When we were all standing in the rotunda of the Cannon House Building, it really hit me that this is a tenacious, passionate and driven group of people. We’re advocating to improve the quality of life for ourselves and the community at large. It really struck me how big of a population we were representing that day.
Leading up to the event, I was concerned I wouldn’t have the energy to make it the entire day, even with my portable oxygen concentrator. I appreciated the wheelchair access PHA provided, which allowed me to participate the entire day and have my moment. That level of support is important for patients.
Playing the long game
Advocacy is a long game. It’s not always the case that a piece of legislation introduced in one Congress is passed and signed into law during that same legislative session. There’s a persistence to advocacy and that’s what I love about it.
This is the second time the Supplemental Oxygen Access Reform Act is going through Congressional review. It can be disheartening if you don’t understand the longer view and see what it takes to truly get a bill passed. If the SOAR Act doesn’t pass, we should look at the number of co-sponsors it had this time around. That way we can identify if we had more people behind us and whether we’re making progress.
I understand that advocacy can be frustrating and nobody likes to hear that the legislative process takes time. But this why is organizations host Hill Days. The events bring people into the fold, get them energized and show them how to advocate.
I also recommend visiting the staff at your lawmaker’s local field office. This is just as important as visiting the office in Washington, D.C. Members of Congress are more likely to champion a piece of legislation if it affects someone in their district. If you’re a constituent with PH, visit the office and share your story with them. They might not even know someone with PH lives there, and you can help them make the connection.
For anyone looking for ways to advocate year-round, I recommend supporting continuous funding for the National Institute of Health. Medical breakthroughs come from research, which can’t be done without funding.
Advocacy is ‘spoon worthy’
In the rare disease space, there’s something called the spoon theory. You only have so many spoons at your disposal because you have less energy, so you’re constantly evaluating what you’re going to dedicate your spoons to. If I have five spoons representing my energy level, what am I going to do with those spoons today? For me, advocacy is spoon worthy. Even if you don’t have a ton of energy, it’s still worth doing.
In the United States, policy and laws are the people. They reflect the voices present during the decision-making process. Whether someone can afford medication is a direct result of decisions made on Capitol Hill. If you’re not there, you can’t be heard. The PH community showed up on Hill Day so decisions can be made with our voices included.
That is why continued advocacy is so important. There are many competing interests in legislation and PH patients have just as much of a right for their voice to be heard as other advocates.
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