Facing the financial challenges of having cystic fibrosis

If I didn’t have cystic fibrosis (CF), I’d be rich.

This thought has crossed my mind many times throughout my adult life. While I can’t prove I’m right, I know I’ve certainly spent an absurd amount of money on CF-related expenses. Living with CF has had many physical, emotional, and psychological challenges, but finances are among them, a huge challenge that’s not discussed as often as it should be.

Cystic fibrosis was once known as a fatal pediatric disease. When I was born in 1971, my mom was told that I probably wouldn’t live past elementary school. At the time, few medications were available to treat the disease. Health insurance was still essential, but otherwise, the medical costs incurred over a lifetime of CF were much lower, given the limited treatments and shorter life expectancy.

Today, health insurance is vital to life with CF and extremely costly in itself. I’ve always chosen the highest level of coverage for unforeseen exacerbations that are typical with CF. They may require deductibles for outpatient testing, home infusion therapy, or even inpatient hospitalization. Despite the high expense of insurance coverage, a plethora of medication and treatment copays, outpatient testing, and out-of-pocket supplement costs remain.

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The struggles I’ve run into

Food and grocery bills are now extremely expensive for many of us, as having CF comes with specific nutritional requirements of more calories, nutritional supplements, and specialty foods. The cost is also high for gas, a car, or other reliable transportation to medical appointments, and prices are increasing. Increasing costs for housing and utilities are a factor as well, and electricity for nebulized inhaled medications and oxygen concentrators can be a matter of life or death.

While the increase in our life expectancy is beyond amazing, the reality is that many with CF still aren’t physically able to work full time, or at all. Just because we’re living longer doesn’t mean we’ll be healthy all of these years.

Plenty of adults living with cystic fibrosis in their 50s and beyond were able to have children when younger, back when that feat seemed like a miracle. I was one of them. My daughter is now 28 years old and the best thing that ever happened to me. But having a child is also a financial responsibility. Luckily I was healthy enough to work in nursing, which paid well. Still, many years I picked up extra shifts or second jobs because CF is expensive and I had to make ends meet.

When my daughter was applying for college, I worked full time. My income was above the limit for her to receive financial aid, but not enough for me to help pay for her tuition. I could barely help pay for her books or meal plan. In the meantime, my health declined to the point of needing a double-lung transplant. This surgery left me unable to work, so we financed everything to get her degree.

Now we have to pay it back. Sadly, I’m unable to help. That leaves me feeling frustrated and guilty. I realize many families cannot pay for their child’s college education. In my case, living with cystic fibrosis and surviving a transplant add other levels of financial strain that leave me unable to help my daughter.

I worry that she’s a CF carrier and could possibly have a child with the disease one day — and thus face her own extra financial challenges.

Starting a family is becoming more popular for those with CF, mainly because CFTR modulator treatment can stabilize health for many of us. As we celebrate these milestones, we must remember the financial hardship for parents and other adults with CF and sometimes even the children of parents with CF. Some financial resources are out there, though they often have income limitations and many have time-consuming reimbursement requirements.

I don’t want to sound ungrateful because I am grateful for any assistance that’s been established. But I’ve run into the problem of being in that middle-income area where I don’t qualify for assistance, yet can’t cover all my costs on my own, at least not easily. I wonder if others are in this position; I’d like to bring it to the discussion table.

I feel this conversation is starting too late, but I’m hopeful and happy it can start at all.

What CF-related financial hardships are you experiencing, and what ideas of yours could add to this discussion in a helpful way? I’d love to hear.

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.