Having PH and Managing Care Is Like Walking Through a ‘PHun House’

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by Mike Naple |

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I often remark that being diagnosed with pulmonary hypertension is like walking into a “PHun house.” Open the door, and everything you’ll see in the mirrors will appear distorted, out of proportion, unfamiliar, and scary.

Strange and uncomfortable things are happening inside our bodies that cause shortness of breath, fatigue, a rapid heart rate, swelling, chest pain, and dizziness, among other symptoms. When I looked in the mirror after my diagnosis six years ago, the person I saw didn’t register initially. It can be difficult to adjust to these new developments that force us to see our health in a different light, especially when it feels like all we see around us is darkness.

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PH unleashes chaos on our bodies. I remember how uneasy I felt when I started having episodes of shortness of breath more regularly. How do you square having to gasp for air after climbing a flight of stairs when you used to run a few miles a week to get exercise?

Before my diagnosis, I felt angry. I had lost control of my body, through no fault of my own, yet the treatment my doctors recommended at the time didn’t make me feel any better. Little did I know, I was experiencing low-grade heart failure and the PH diagnosis would be a lifesaver.

A fun house is full of surprises, and becoming acquainted with the pain and trauma that PH unleashes inside our bodies is part of post-diagnosis life. Walk through the hall of mirrors in the “PHun house” and you’ll reach a hallway with a seemingly endless number of doors. Some lead to dead ends or more doors and stairwells. These represent the multitude of interactions you’ll have with the U.S. health insurance system, which will test your patience and leave you on hold for hours on end.

The other day, I had one of those eyes-bugging-out moments like in the classic cartoons. While paying my portion of the charges for my latest quarterly checkup, I happened to look at the amount the care would’ve cost without health insurance. It was yet another reminder about how expensive it is to be alive and chronically ill.

I did a little math, and the amount I would’ve owed if I weren’t insured was roughly 60% of my rent. Coincidentally, it’s also roughly equivalent to what I’d pay for just one of my PH prescriptions if I had to pay out of pocket without health insurance. I fail to understand how people like me who live with PH or another chronic illness could manage their treatments effectively without being able to afford quality health insurance to lower the cost of medications and care.

It’s not a given that everyone in the U.S. has access to health insurance, let alone those living with chronic illnesses and rare diseases, who actually need to use healthcare services to maintain their quality of life. Census data from 2020 show that 8.6% of U.S. residents, roughly 28 million people, lacked health insurance that year.

Consider those who may be stuck in that labyrinth of locked doors, unable to afford the health insurance they need to treat their illness. I know the frustration that comes from being denied health insurance. Maintaining access to quality, affordable insurance is one of the main factors behind my drive to remain employed, while still doing my best to prioritize my health and manage my PH.

The financial implications of living with a chronic illness can contribute to higher levels of stress, which in turn can cause PH-related symptoms to flare. This progressive disease requires us not only to listen to our bodies and learn the biological side effects, but also to navigate the twists and turns of the U.S. health insurance industry. The weight of that sentence alone makes me exhausted.

The Pulmonary Hypertension Association (PHA) offers resources for charitable assistance and other financial support for patients who need help affording their medications. The PHA Advocacy Action Center also provides tools for those who want to tell their federal lawmakers to protect patients’ access to these charitable resources.

On Thursday, our community will mark World PH Day to build greater public awareness and prompt people to take action. I urge readers in the U.S. to write your representatives in Congress to share your experience in the “PHun house,” and to press them for legislation that helps lower the out-of-pocket costs of care. Every call, email, in-person visit, and letter help to move the needle ever so slightly toward better access to affordable care for the PH community.

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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