Putting Advocacy Experience to Work

Writer and communications strategist Mike Naple has been involved with advocacy for more than a decade. He works at a public affairs firm in Washington, D.C., where he specializes in health care advocacy communications. Mike’s pulmonary hypertension (PH) advocacy started after his Group 3 diagnosis.

for PH Community

BY MIKE NAPLE

Advocacy was part of my life long before pulmonary hypertension (PH) entered the picture.

Before my diagnosis, I worked on Capitol Hill in Washington, D.C., as communications director for a congressman from my home state, California. Congressional staffers are surrounded by advocates roaming the halls, standing in front of you in the cafeteria line or sitting across from you in a meeting, hoping to educate legislators on important issues.

In May 2015, I noticed shortness of breath, dizziness and chest pains during the short walk from the Metro stop to my office. I had been at my job about three months.

SEEKING DIAGNOSIS Like others, I had trouble getting an accurate and timely diagnosis. My doctor insisted I had untreated asthma and wanted to treat my symptoms with inhalers and prednisone, only to be confused why I showed up two months later with worse symptoms.

The doctor disregarded previous episodes of pulmonary edema, which can occur when traveling to high altitudes, although the elevations were relatively low for severe symptoms.

After a scan showed ground-glass opacities in my lungs, my doctor dismissed the possibility of a biopsy or a right heart catheterization. My doctor said a right heart catheterization or a biopsy were too invasive and he didn’t want to pursue that course of treatment. The doctors were reluctant to recommend semi-invasive procedures even if they could lead to an accurate diagnosis.

I knew any procedure came with risk, but I wanted to explore all available options to address significant shortness of breath episodes. Instead of listening to me, the doctor kept prescribing medications and ordering new tests.

At the same time, the distance I could walk without gasping for air shortened by the block. I knew if I wasn’t a stronger advocate for myself, things could get worse before they got better.

I advocate because policy decisions made in Congress have real impacts for people like me who regularly use the U.S. health care system.

UNCERTAIN FUTURE My attempt to advocate for myself resulted in more echocardiograms and stress tests before that doctor prescribed in-home oxygen therapy in December 2015.

One morning in March 2016, I woke up sweaty with excessive chest pains and decided to check myself into urgent care. I believe this action, in which I had to advocate for myself, likely saved my life.

After a few days in the hospital, I was transferred to a second hospital where a care team that specialized in PH performed a right heart catheterization. I discovered that I had low grade heart failure because of PH.

I felt so much uncertainty after getting diagnosed. Estimates about a three- to five-year life expectancy if the disease was left untreated shook me to tears.

Would I have the energy to go back to work? Would I be able to afford the medications to keep the disease from progressing and manage a decent quality of life? Would my partner, family and friends still want to be around me?

A NEW CAUSE With so much unknown, I gravitated toward the familiar: advocacy. I searched for stories of other people with PH. I discovered the Pulmonary Hypertension Association (PHA), and I began to connect with other people to learn how they were adapting to this terrible, life-threatening disease.

A year after my diagnosis, I watched on television as the Republican House majority voted to repeal the Affordable Care Act — the landmark health reform law that made it illegal for insurance companies to discriminate and deny coverage to people with preexisting conditions, like PH. I know the frustration that comes with being denied insurance for previous health conditions, and the fear of a high stack of expensive medical bills.

In 2018, I attended my first PHA International PH Conference and Scientific Sessions in Orlando. I listened enthusiastically during the advocacy session to learn about PHA’s policy agenda and its federal and state-level resources for its patient and caregiver advocates.

SHARE YOUR STORY My advocacy philosophy is rooted in storytelling: the people who bring their experiences to the table to change policy. Advocates are the backbone of any movement for change in law or policy or fight for a cure. I’ve seen advocates move legislators to speak out or support an issue.

My first PH advocacy action was when I published my diagnosis story on The Mighty, a blog for people facing health challenges, in May 2017. I also have written columns for Pulmonary Hypertension News about the importance of advocating during PH Awareness Month in November and year-round.

I’ve also written about the importance of reaching out to elected officials and urging Congress to lower the cost of prescription drugs, to make treatments more affordable for people with PH and other chronic illnesses.

I advocate because policy decisions made in Congress have real impacts for people like me who regularly use

the U.S. health care system. Federal funding allocations and changes in laws passed by Congress can dictate the affordability and accessibility of health care coverage and health care services. That includes the cost of prescription drugs for folks in the rare disease and chronic illness community.

Living in D.C., I find direct advocacy to be a bit of a challenge because we don’t have full representation in Congress. Still, I’ve used PHA’s advocacy tools to send letters to Congresswoman Eleanor Holmes Norton (D-D.C.). I also participated in a PHA virtual advocacy seminar in June 2020.

INFLUENCING CHANGE Elected leaders need to hear from PH patients, caregivers, family members and specialists. Effective advocacy can bring policy changes that improve quality life for all of us. You can visit their district offices, call or write them a letter. Get to know the staff of an elected official because they’re often your best ally and use the resources made available through PHA.

Most importantly, advocate in the manner that makes sense for you. I advocate mostly through writing and telling my own story.

Five years since my diagnosis, I am grateful to still have the energy and ability to work full-time and advocate on behalf of the entire PH community.