The many ways to be an advocate for a ‘disease that has no cure’

When you struggle to breathe, yet fail to understand why, it can feel like you’ve lost your way in a dark wilderness. It’s scary and isolating, and you have nary a map, flashlight, or proper diagnosis to help find a lighted path out of the woods.

I saw my fair share of doctors over the years who treated me for conditions like asthma and high-altitude pulmonary edema, without hearing as much as a murmur about pulmonary hypertension (PH). Like many others, I had no knowledge about this disease that was affecting my heart and lungs before receiving my one-way ticket to a “new normal” of shortness of breath, fatigue, multiple medications, echocardiograms, and six-minute walk tests.

Reflecting on that time reminds me why spreading the word about PH is so important. Whenever I talk to people about the daily management of this disease, it’s an opportunity to educate, raise awareness, and be an advocate. That it can be a struggle to find a pulmonologist or specialist who can decipher the symptoms to offer a correct and timely diagnosis should raise the alarm that too few people know about this disease that has no cure.

For Pulmonary Hypertension Awareness Month, I’ve compiled some handy tips for anyone who wants to spread the word and advocate “PHearlessly” for themselves and the broader PH community.

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Tell your story

Sometimes awareness begins at home or within our extended community. Do you talk about living with PH to your friends and relatives? There are moments when I feel like I’m a burden to others when I share about having frustrating phone calls with operators who bounce me between pharmacy and insurance company representatives. There is value, however, in talking (or writing) about all the aspects of a disease that others might not be familiar with. Conversations I’ve had with relatives have translated into them taking action to educate people about PH across their extended networks. Our stories are powerful and worth telling.

Reach out to elected leaders

I can almost guarantee that every member of Congress would benefit from hearing from constituents who are in the PH community — even representatives we consider champions for the cause. A new session of Congress begins every two years, and it can take multiple sessions for our representatives to pass legislation. Plus, many don’t understand why PH-related legislation should be a priority.

When I worked in Congress, it was my job to communicate legislative proposals to the press and the public. I would regularly ask my legislative colleagues about the impact of specific bills in order to make the connection to folks back in the district. Some of these legislative ideas would come directly from constituents and stakeholders who wanted lawmakers to address a specific issue.

There are many different ways to connect with your federal elected officials — call them, email them, or meet with them in your community or in Washington, D.C. The Pulmonary Hypertension Association has useful tools to help advocate and raise awareness about legislative initiatives like the Safe Step Act and supplemental oxygen reform, two legislative efforts designed to ensure PH patients have access to their medications and improved quality of life.

We don’t have to stop with just contacting congressional leaders. We can also call, write, or email the president to educate the administration and advocate for ways to improve the quality of life for patients and caregivers.

Write a letter, make a connection

Writing a letter to the editor to your area or community newspaper is an excellent way to share your experience of living with PH. These letters are a tried and tested advocacy tactic and can help draw the attention of local leaders and officials. Be sure to check the websites of your hometown newspapers for submission guidelines, including a word limit, as it varies among outlets.

Raising awareness means building community and connecting with others who unite through a shared purpose or cause. You can join conversations on a variety of PH-related topics at the Pulmonary Hypertension News Forums. Come for the discussion on awareness and advocacy, stay for the recipe ideas.

Sound off in the comments below about how you work to raise awareness and advocate this month and throughout the year. You can also follow me on X (formerly 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.