How Our Stories Can ‘Spark Awareness’ of PH in Congress

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by Mike Naple |

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I’m grabbing the megaphone to raise awareness and advocate for pulmonary hypertension (PH). And I invite you to join me.

Through advocacy, we’re able to make changes in the United States’ democratic system of governance. I believe change begins with the advocates and the storytellers who share their lived experience with their elected representatives.

This year, the Pulmonary Hypertension Association (PHA) is asking the community to “Spark Awareness” with their advocacy activities throughout PH Awareness Month in November. To get readers in the spirit, I’m sharing some tips I’ve learned in my career as a healthcare advocacy and communications strategist.

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Tell your story

Following my PH diagnosis, I felt scared, frustrated, and restless — uncertain about what was to come. Reading stories about other PHighters helped me understand what life would be like going forward.

Eventually, I realized I had a story to tell about the ways PH shapes my life, including adjusting to oxygen therapy and taking various medications multiple times throughout the day.

My columns often reflect a belief in storytelling as an essential advocacy tool aimed at improving the lives of people in the chronic illness, rare disease, and disability communities.

Personal stories are effective because they resonate. We all consume and respond to different elements of storytelling. A great story isn’t just found on the big screen or in the pages of a book. A great story is often the foundation for a visit with your member of Congress to educate them about PH. I have seen how members of Congress respond to the different circumstances when an advocate tells their story.

The halls of Congress are replete with people fighting for legislative and policy changes on a countless number of issues. Even Paris Hilton took a trip to the nation’s capital to tell her story in the hopes of pushing federal lawmakers to take action on a cause and make a difference.

There’s not much separating one person’s story from another except the act of telling the story. If you’re not ready to tell your story in person, consider writing a letter to your elected representative.

Use national advocacy tools and resources

You don’t have to start from scratch. In fact, some people are afraid to jump into advocacy work because they don’t know where to begin. The good news is your friendly national advocates at PHA have all the resources you need to channel your passion for the PH community into action. Check out the Awareness Month Toolkit and Advocacy Action Center to learn about the different ways you can participate. These resources make it easy for people to advocate and raise awareness of PH, even if you’ve never contacted your member of Congress before.

Get to know your representatives (and their staff)

Congress votes on who has access to affordable health coverage, the price of prescription drugs, and funding for rare disease research, among other policies pertinent to our community. As a former congressional aide, I know firsthand that more lawmakers need to hear from PH patients, caregivers, family members, doctors, researchers, and everyone united by this rare disease affecting the heart and lungs.

Most federal and state-level lawmakers want to hear from their constituents, and certainly there are members of the PH community in their districts. Constituent sentiment can influence how members of Congress vote — that’s why PH needs to be on their radar.

I encourage you to connect with your representatives at their local district office or in Washington, D.C. This includes getting to know their staff and communicating with them regularly through your advocacy work.

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Be the tortoise, stay the course

Sometimes the pace of lawmaking can feel like a grueling marathon with no finish line in sight. While I’d be lying if I said this didn’t cause me to feel defeated from time to time, I’ve found it’s often smarter to think like the tortoise rather than the hare if you want to meet your goals.

Advocacy is a long-term game. Improvements are fought for and made over years, sometimes decades. Staying the course means educating Congress on multiple occasions about what life is like with PH. Sharing details about your lived experience — for instance, how I can become short of breath just from making the bed — over time can move the conversation from awareness to policy action.

I hope these tips help you advocate this month and throughout the year. Whether calling, tweeting, or meeting with your representatives, we can all spark PH awareness that lights a fire for change!

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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.

Comments

Sally Hoffman avatar

Sally Hoffman

Mike, Thank you for your article. You have inspired me to write to Congress for the first time. In the past, I always thought I was too lucky to ask for anything. Now I know what to ask for, and I do have a story to tell. My only problem is that my Congressman, Vern B is a Republican who doesn't care. Can I write to someone who is not from my district, but I know he does care? Best, Sally

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