A person receives a clipboard with many paths of health care information.

Health + Expenses

It’s no secret that having a chronic illness can lead to significant financial burden. The cost of health insurance alone, in the U.S., can be upwards of $1,000/month (for family premiums). However, knowing and understanding health insurance terms and procedures can help you save money and time!

Before I begin, I want to be upfront about the fact that I am very blessed by receiving affordable health insurance through my husband’s employer. I understand that this is not the same for everyone, but in sharing my experience, I hope to be an encouragement to others in how I’ve managed this aspect of life with cystic fibrosis.

Helpful health insurance terms

Health insurance premium

This is the amount of money that you pay for your health insurance coverage. Often, the premium is due monthly, but some plans have options to pay every 6 months, or once per year. The amount that I pay for my premium per year is around $1,000.


A deductible is the amount you pay before insurance kicks in to cover a portion of the expense. As an example, if you have a $900 deductible, then you would have to pay a total of $900 of medical expenses before your health insurance contributes any portion of payment. Once you’ve paid your deductible, your insurance should pay a percentage of future health care. Some things, like preventive care, may be covered by your insurance even before your deductible is met.

Copay (copayment)

A copay is the amount of money that you owe, after the insurance has paid its portion (even if that portion is $0). Copays can fluctuate based on the service provided as well as where the service was provided. The copay amount may be listed as a set fee (e.g. $20 per visit), or as a percentage (e.g. 20% of the total amount billed).

Out-of-pocket maximum

An out-of-pocket max is the maximum amount of money you can pay per year, before insurance pays for the remainder of your care. Keep in mind that health insurance plans have different stipulations on what is covered under the out-of-pocket max, but it likely covers essential care as described. Out-of-pocket maximums differ from plan to plan, and include one amount for individuals and one amount for families (e.g. $5,500.00 vs $13,000.00). This means that I would pay a maximum of $5,500 dollars per year for myself, and a maximum of $13,000 dollars for my entire family.

*These numbers are given as an example only, and may not be an accurate representation of a typical out-of-pocket max.


These terms are used to describe the relationship between a health insurance company and a care facility and/or physician. The term “in-network” means that your medical coverage applies when care is received. “Out-of-network” means that your health insurance may cover differently than expected. Out-of-network care is usually the most expensive, because your health insurance may cover less than usual, or not at all - leaving you with the bill.

FSA (flexible spending account)

An FSA is a benefit through an employer that allows an employee to set aside pre-tax dollars to use for medical expenses.

My experience with health insurance

Under my parent's health plan

Through my time at college and into adulthood, my parents were generous enough to cover my health expenses. When I got married, I quickly realized how much CF was going to affect our monthly budget. My jaw nearly hit the floor when I saw the 6+ figures of medication costs before insurance paid their portion. Even still, monthly expenses were anywhere from $300-500 per month. At the time, this was my largest expense after rent.

During pregnancy

During my pregnancy with my daughter, my husband and I realized that, in just 4 months, we racked up nearly $10,000 in medical bills. I was absolutely overwhelmed. We had never carried consumer debt, and I was in unfamiliar fighting my own battles with my insurance company and different hospitals. I didn’t have a good understanding of my health insurance coverage. Unfortunately, my ignorance on the subject cost me nearly $2,000 dollars when my CF clinic sent my bloodwork to an “out of network” lab. I tried to keep my head above water, but every time I opened the mailbox it felt like I had flushed another $1,000 dollars down the drain.


After my daughter was born, things settled down. My labor and delivery expenses had met our out-of-pocket maximum, and each doctor appointment, course of IV antibiotics, and medication was covered completely by my insurance. It felt like a breath of fresh air, and we soon paid off the $10,000 dollars we owed.

Knowing health insurance terms is empowering!

The feeling of being free from that weight helped me realize that I didn’t want to make the same mistakes (or rather, allow the same mistakes to happen). I became somewhat of an expert on my health insurance plan. I memorized the deductible amount, the copay percentage, and the out-of-pocket maximum. My husband’s work offered an FSA option, and we took full advantage of it. Since my husband and daughter have rarely needed anything more than preventative care (which is covered at 100% by our insurance), we decided to place the individual out-of-pocket maximum for myself into the FSA. That way my health expenses, which gravely outweigh the cost of the rest of my family’s, are planned and accounted for by the first of the year.

I was surprised by the fact that simply understanding the basics about my health insurance plan helped me more easily afford things like a physio-therapy vest, nebulizer cups, port-flushes, and more.

It’s been two years since I have felt the dread and drain of finances from my cystic fibrosis care. Though the same amount of money is needed each year (since I always meet my out-of-pocket maximum), careful planning and saving has allowed me to feel more in control of the financial demand of cystic fibrosis.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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