Join me this August in advocating for those who have PH

I’ve said it before, and I’ll say it again (and again): Elected leaders in the United States need to hear from their constituents, which include many of us in the pulmonary hypertension (PH) community. The doldrums of August is the perfect time to connect with your members of Congress, educate them about this disease, and advocate for policies and legislation that will benefit us.

Advocacy is a significant component of my PH experience. The months following my PH diagnosis in 2016 felt like I was trapped in the dark, crawling around in search of a switch to turn on the lights. I knew nothing about this rare heart and lung disease. I didn’t know anybody else, in person or online, also affected by PH, nor did I fully understand how the disease would affect my life over the next seven years.

Having a chronic illness or rare disease is life-changing. You learn to navigate side effects and symptoms, medication schedules and prescription refills, and medical appointments with specialists — all while adjusting to a new normal. I wasn’t interested in staying in the dark about PH. If I wanted to turn on the lights, to make sense of what to expect, I had to look in my own toolbox for a flashlight. So I leaned into what I knew.

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I live in Washington, D.C., where I’ve worked as a communications professional across various governmental and advocacy spaces. I thought about the kaleidoscope of advocacy organizations and associations raising awareness about their specific issue and fighting for federal policies and legislation that benefit their constituencies. Since there were organizations advocating for candymakers and the proper care and breeding of reptiles, there could be one focused on my rare disease.

That’s how I found the Pulmonary Hypertension Association (PHA), a national nonprofit organization dedicated to fighting for a cure and improving the lives of people affected by PH. Through PHA, I identified resources to better understand the disease, connected with others with PH to build community, and found an avenue to advocate and share my own narrative.

Congress members in your backyard

Every August, members of Congress leave Washington to spend an extended amount of time in their home districts. (If you don’t know who your representative is, resources to help exist.) You can call to schedule an appointment with the district office or see if your representative or senators are hosting any town halls or community gatherings.

If such an event is planned, I suggest connecting with the office ahead of time about any accommodations you’ll need. This outreach is especially important if the event is planned for outside, given the excessive heat around the country this summer. (I try to stay out of the heat whenever possible to avoid any PH-related flare-ups.) Those events are also good opportunities to meet with other advocates in your area.

Brushing up on PH-related legislation

Federal lawmakers make impactful decisions on healthcare policy, touching on everything from the price of prescription drugs and out-of-pocket healthcare costs to funding amounts for rare disease research and regulations. They’re used to hearing constituents support or oppose policies or encouraging them to vote a particular way on legislation. You might also be advocating for legislation your representative or senators aren’t aware of yet or haven’t had the chance to voice their positions about.

You could educate your lawmakers about the Safe Step Act of 2023, for instance. That act would limit certain health insurance policies from dictating that a patient first try a less expensive treatment than the one their doctor prescribed. The patient needs to “fail first” at the lower-cost option before the insurance company will authorize the originally prescribed treatment. This legislation would ensure that PH patients and others who depend on specific treatments will have access to them when needed.

A bipartisan group of senators successfully advanced the Safe Step Act out of the Senate Health, Education, Labor, and Pensions Committee so it can be considered for a vote by the full Senate. The PHA offers this advocacy tool for those interested in emailing their opinions to their senators or representatives.

Tell your story

When I think about PH advocacy, I also see the many stories the community has yet to tell. Stories are incredibly powerful. They can have a lasting impact on policies that affect people with PH, and our elected officials need to hear them.

You might be the first constituent a member of Congress meets from the PH community. Who knows what change your story could spark?

Follow Mike on X, formerly known as 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.