Do you find yourself going broke while managing PH? You’re not alone.
Living with PH feels like a constant financial balancing act
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Unless you’ve been hiding under a rock lately, you’ve probably noticed how astronomical the cost of living has become. I’m talking about the basics: keeping a roof over our heads and food on the table, and securing the everyday necessities we all need to get through the day. Honestly, some mornings, hiding under a rock — or under the covers — doesn’t sound like the worst idea.
If you’ve been reading my columns for some time, you may remember one I wrote several years ago, titled “Why I’m a Million Dollar Baby.” In it, I described the staggering costs of managing my pulmonary hypertension (PH), along with several coexisting conditions. Even back then, the financial reality of living with a rare disease was shocking to me. In today’s economy, the pressure is crushing.
Like many families, my husband, Manny, and I faithfully pay our ever-increasing health insurance premiums each month. We do everything we’re supposed to: We pay on time, I follow my treatment plan to the letter, and we never miss an appointment. And yet, the mountain of out-of-pocket costs for medications, tests, and specialist appointments feels insurmountable. Our insurance helps, but it never seems to be enough.
On top of that are the extra costs most people don’t think about right away. Managing PH often involves using durable medical equipment such as oxygen tanks, portable oxygen concentrators, tubing, and pulse oximeters. Even with insurance, I’m hit with rental fees, replacement costs, and maintenance expenses that pile up fast.
Finding a balance
For many of us, living with PH and other chronic conditions feels like a constant financial balancing act. I’ve heard stories from others in the community who quietly confess that by the end of the month, they’re scrambling, wondering how they’ll pay for their next refill. Some have been forced to make unimaginable choices between everyday essentials and the medications that keep them alive.
For those in the PH community, many treatments are not optional; they’re vital. And interrupting these essential medications isn’t just risky; it can be fatal. This constant pressure creates a profound level of stress that’s hard to grasp unless you’ve experienced it firsthand — a stress that, ironically, can worsen PH symptoms.
This isn’t an isolated story. It’s a widespread crisis that continues to escalate.
According to the National Institutes of Health, individuals living with rare diseases often face medical costs three to five times higher than those without rare conditions. Beyond the numbers are real families, like ours, who are trying to stay afloat.
Managing PH is more than just a daily routine of symptoms and medications. It’s a constant cycle of chasing insurance approvals, stressing over copays, fixing broken medical equipment, and holding your breath every time you tear open a new medical bill. Even with the best planning and decent insurance, the financial weight of a rare disease can feel overwhelming.
‘PHighting’ back
To “PHight” back, I turn to the community. Patient organizations, advocacy groups, and support networks are more than just resources; they’re lifelines. They connect us to financial aid, empower us with knowledge, and fight for policies that can change our lives.
But it’s also on us to speak up. We need to be painfully honest about the financial realities of living with a rare disease. For too long, these struggles have been silent battles, fought by patients who feel too ashamed to admit they’re drowning.
No one should ever have to choose between buying groceries and paying for the treatment that keeps them alive. By sharing our stories, lifting each other up, and demanding change, we can build a future where a rare disease diagnosis doesn’t come with a sentence of financial ruin — because our lives are priceless.
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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