Managing a chronic illness and navigating insurance can be quite the challenge, and at times, a nightmare. As a 36-year-old living with cystic fibrosis, I have had many experiences with insurance, from Medicaid to employer-provided insurance, and have faced many challenges. CF is an expensive disease, and having the right insurance makes all the difference. 

During my college years, I was on Medicaid. I had no issues with my medical care and prescriptions being covered. Not even once did Medicaid deny my CF care. To this day, I still advocate for the government to provide funding for Medicaid, as it is essential and designed for those who cannot afford insurance.

Then I got my first teaching job, and I had to select a health plan from my employer, as I no longer qualified for Medicaid. My employer offered the cheapest insurance plan. This is one of the drawbacks when you have to select an insurance plan through your employer. 

For many years, while I was on my first employer’s plan, I had no issues with my medical expenses being covered. I was shocked, considering how expensive CF can be. Then the insurance company started making it mandatory for me to get my annual CF labs done at their designated facilities instead of at my CF care center. While I had a primary care physician, I had always gone to my CF care center for my annuals. In addition to the labs, they also required my prescriptions to be filled through their facilities only. Anything outside of the facility was considered out-of-network.

Toward the end of my employment is when things started to get messy. At the time, there was a nationwide Creon shortage. My insurance company used this as an excuse to try and switch me to their preferred brand of enzymes. Those enzymes don’t work for me, so I began to question this with the insurance company. Were they switching them because of the shortage or were they looking to cut costs? 

I was down to my last bottle of Creon. Meanwhile, the insurance company kept taking their time. So, I went to Compass for advice. They researched the Creon shortage and discovered that, while there was a shortage, it was resolved by the time I needed my new supply of enzymes. Not a day after we pointed this out, my insurance company filled my Creon prescription with no problem. 

In 2024, my husband and I moved to Columbus, Ohio. With moving came a new employer. This employer provided a better health insurance plan, and I had no issues getting my medical and prescription costs covered. There seemed to be fewer challenges, and my insurance nightmares seemed to be over. 

Then I was let go and had to find another job with a new employer. This employer offered an insurance plan that had high premiums and a high deductible. All my prescriptions and medical costs seemed to be covered, with low copays for every visit to my CF care center. Then my doctor approved me to try Alyftrek off label in June 2026. Previously, I was not qualified to take a modulator due to my mutations. Amazingly, my insurance had no issues covering Alyftrek (which is a very expensive medication). I had to complete a variety of safety labs before starting the modulator. I was excited and looking forward to what Alyftrek could do for me. 

Then came a surprise bill in the mail from my CF clinic. My insurance did not cover the costs of the safety labs, which honestly did not make sense to me. I immediately called my insurance company, and they told me it was because I had not met my deductible. I also asked why they would cover Alyftrek but not the safety labs that came with starting it. They told me if I had started Alyftrek when I got my annual labs, they would have been covered with my other lab work. Because I couldn’t afford to meet my deductible, I had to discontinue using Alyftrek and put my CF clinic visits on hold. 

In June 2026, I started another new job. With a new employer came a new insurance policy. This time, I did extensive research into selecting the best plan that works for my CF and also meets my husband’s medical needs.

My advice to others who are battling their insurance or selecting a new insurance plan is to first advocate for your needs. 

Second, don’t be afraid to reach out to CF Foundation Compass. The program is free and the case managers are understanding and willing to review your insurance plans. In addition, they can help you with a variety of other insurance issues. 

Third, if your employer offers a free counselor to help you select a plan and benefits, I would urge you to utilize this resource. When looking at a plan, consider the deductible, copays, whether the plan covers specialty prescription coverage (insurance plans only cover prescriptions if they are in their formulary), how much of the plan is being covered by your employer, and finally if your CF care center visits are covered. 

Most importantly, do not hesitate to ask questions and reach out if you need assistance.

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