Ushering in a New Generation of PH Champions

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by Mike Naple |

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When I checked into urgent care in 2016, I was supposed to be preparing a member of Congress for a summit at the White House. But instead of going to work the next day, I sat in the hospital for nearly two weeks and left with a pulmonary hypertension diagnosis.

Advocating for change through the legislative and public policy process has always been a part of my professional life, and it was through advocacy that I processed and understood my life with PH.

At the mention of Rare Disease Day — celebrated annually on the last day in February to raise awareness about the estimated 300 million people living with a rare disease — I immediately think about public policy advocacy and contacting a local elected official or a member of Congress.

During my time as a communications director in the U.S. House of Representatives, concerned citizens would call the office of the congressman I worked for to voice their opinion on any number of issues. Not a day passed that I didn’t listen to a constituent express their concern about the high cost of prescription drugs, the lack of affordable healthcare, or many other issues.

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Where Do You Fit Within the PH Community?

Calls would come into the office at a steady clip. Often, the congressman would ask about the nature of the calls or if we were getting a high volume of calls about a particular policy issue or piece of legislation. Maybe you called your member of Congress in 2017 when Republican lawmakers attempted to eliminate the Affordable Care Act, for example?

Today, I can’t help but think, what if those calls were from people in the PH community — patients sharing what it is like to live with a rare, progressive, and incurable disease? What if members of the PH community had called to advocate for policies to improve the access and affordability of medications, federal funding to support research, or programs aimed to help chronically ill and disabled people?

Rare Disease Day, which was yesterday, is the perfect time to encourage people to reach out to their congressional representatives. Following are a few reasons you should make contact.

Longtime PH champion retiring

Lawmakers want to hear from their constituents. Sometimes constituent concerns can be the impetus for a member of Congress to research and draft a new piece of legislation. Sometimes constituents inspire lawmakers to champion a new cause.

Rep. Kevin Brady of Texas has been a vocal supporter of the PH community on Capitol Hill for many years. In fact, he introduced the first piece of federal legislation related to PH in 2000, partly because of his awareness of people with PH in his own congressional district. More than 20 years later, Brady has announced his retirement from Congress.

While there are still some phenomenal PH champions on Capitol Hill, including Rep. Jamie Raskin of Maryland, we have the opportunity to cultivate a new generation of lawmakers to fight on behalf of our community.

You can contact your U.S. representatives or senators at their district or Capitol offices. Ask for a meeting with staff members to share your story and to ask that they support federal PH-related legislation. Who knows, your story may just motivate the next member of Congress to champion policies that benefit the PH community!

PH-related legislation in the 117th Congress

The Pulmonary Hypertension Association is the national advocacy organization for patients, caregivers, doctors, and the broader PH community. Members of the association’s staff track legislation in Congress and provide resources for people to engage in advocacy work and to contact their elected representatives.

One current piece of legislation, the Safe Step Act, seeks to ensure that patients have access to the therapies that work for them by preventing health insurance payers from requiring patients to “fail first” with cheaper medications. Everyone should be able to access therapies to treat their chronic illnesses without delay or unnecessary risk to their health.

The HELP Copays Act is another PH-related bill that aims to protect patients who rely on charitable assistance to afford expensive PH medications. The legislation would help patients save money by lowering their out-of-pocket costs.

These are two bills you can ask your senator or representative to support. If you don’t feel comfortable speaking on the phone or in person, you can take action by sending an email to your elected official.

My place in the PH advocacy space

We all have our place in the PH community. Rare Disease Day reminds me that one of my places is the advocacy space. I’m glad I can use my background and patient advocate experience to help spread the word about pulmonary hypertension in the halls of Congress.

Follow Mike on Twitter: @mnaple.

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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A Conversation With Rare Disease Advocates