Many with cystic fibrosis can barely afford to stay alive

It’s extremely expensive to have cystic fibrosis (CF), as I do.

It’s extremely expensive to have any chronic illness. It’s extremely expensive to be sick. I’m beginning to wonder if the system has been accidentally rigged against those of us who are ill, no matter what we do.

What is “the system,” you ask? That’s worth knowing, as I feel that many of us who deal with ongoing or progressive sickness use these two words more than we realize.

Society, stigma, and red tape — cumulatively, The System — are all aligned to make healthcare seem like an impassable bog, unless we have plentiful personal resources before we’ve even begun the journey.

I’m of course speaking about my experiences as someone with atypical CF, usually a milder form of the disease, in the United States. But I’m sure many people around the world feel trapped in their systems, too.

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The healthcare chasm

The cost of having a family and atypical cystic fibrosis is hard to handle, even if we take bathroom selfies together. (Courtesy of Bailey Anne Vincent)

I think there’s a caste chasm in healthcare that cannot be surmounted unless you’re given a hand up — unless, for example, you have good health insurance or you’re lucky enough to be born into a family with personal savings in the bank or assets to sell if the bills tally too high. Even with insurance or financial resources, CF can be expensive.

Many of my friends have been able to work their bums off to climb past the ladder rung of their birth; they’ve achieved higher academic success or earned steadily and well in their fields. So I’m not saying that hard work doesn’t matter. But the sacrifices many people make to provide for their families and themselves can be exorbitant. Sometimes, as with military and police officers, the jobs can cost someone’s life.

To help more people understand how much The System — I’m going to give it capital letters to recognize it’s omniscience — isolates those who are sick, think about this fact of my life: If I wanted to join the military, even with the devotion and risk it demands, so that I could get housing, earn my degree without crushing loans, and retire one day, I cannot because of my CF. Even though a life of service is far too underappreciated in this world, many sick people in the U.S. don’t even have the choice of making that sacrifice.

Many people with progressive illnesses blaze a path in their professions, proving that it can be done. But for those of us with frequent hospitalizations or surgeries, higher-earning jobs seem less and less likely — such as a surgeon, who has to stand all day, or a lawyer, who often has to work into the wee hours of the night. Even if they give all they have, many ill people cannot climb higher in The System to give themselves a better financial situation.

I was lucky to be born into a family that could and did provide for me. Still, even when a person’s community can offer help or a loan, most people with sickness know they’ll never be able to work enough to pay it back — so, eventually and perhaps ethically, they stop asking for help altogether.

Meanwhile, I believe our world is no longer built for one-income households. Unless the healthier partner is of a certain class, a single income is not enough to sustain most families, especially if they’re sustaining the costly life of a sick person who can’t maintain a steady wage.

Let’s be aware of costs

I’m writing about these issues to raise awareness of how expensive it can be to keep someone alive, of how many hoops must be jumped through to find our way sometimes.

I believe The System hurts sick people the most when they exist in what I’ll call a middle area, though it’s difficult to label.

“Can tired selfies be the new trend?” (Photo by Bailey Anne Vincent)

In the middle area, someone might work hard enough to outgrow governmental aid, yet find themselves spending so much on travel to clinics, paying for a child’s cafeteria food, or keeping up with copays that they’d be able to eat more produce and have safer housing if they qualified for various forms of low-income assistance.

Living with CF or another ongoing illness means the bills never stop. Unexpected expenses and terrifying life-and-death interruptions are going to keep happening, which means that savings can’t keep saving us because they’re not for once in a while anymore.

Even the time it takes to apply for grants should be more readily recognized, and even after an application is submitted, many charities and other resources don’t act on them fast enough. Though desperately needed and critically important, such grants are still like winning Willy Wonka’s golden ticket. Nonetheless, casually asking “Can you apply for grants?” — even when it’s well intended — isn’t helping, at least not immediately.

The amount of work it takes for most sick people to keep going is equivalent to a full-time job. So some people will never be able to climb a rung higher in The System.

Sometimes it’s not how hard we work. It’s just whether we draw the golden ticket.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.