5 Tips for Navigating Health Insurance with CF

Like many of my millennial compatriots, I was booted from my parents' health plan when I turned 26. While my friends were shrugging health insurance off as just another growing pain of their 20s, I was panicking. 

Oct. 30, 2015 | 5 min read
Ali Brown

Navigating health insurance is stressful. Navigating health insurance with cystic fibrosis is a nightmare.

In the months leading up to my 26th birthday when I'd be booted from my parents' health plan, I became obsessed with a stream of “what ifs?” What if I can't get the coverage that I need? What if I spend all my money on medications and visits? What if I lose my insurance?

Once my birthday finally rolled around, I had a full-time job that offered benefits. While this made the transition from my parents' plan much easier, I still fought back tears the first time I looked over my company's health coverage options. It's not that the options looked bad, it's that I wasn't sure what bad or good looked like. I felt like Jon Snow in Game of Thrones. I knew nothing.

In the 18 months since, I've come a long way thanks to more than one health insurance hiccup (and a lot of desperate phone calls to my parents). And now, although I'm hardly a health coverage expert, I can offer a few tips for navigating the scary world of health insurance with CF.

  1. Understand your total costs.

    Know how many CF-related costs you'll be financially responsible for. It's crucial when planning ahead (and staying sane).

    Typically, the most you'll pay for health care each year with a plan is your premium + your deductible + any coinsurance you have to pay (up to your out-of-pocket maximum) + any copayments. In general, the lower your monthly premium is, the higher your out-of-pocket costs will be, and vice versa.

    Look for a plan with prescription copays that go toward your deductible. You'll meet your deductible quickly this way, thanks to the high cost of most CF drugs.
  2. Know what is covered.

    Make sure that your doctors are in-network before you enroll. Check your insurance company's website or call your doctor to find out.

    Look at your prescriptions and understand that coverage as well. Some plans require a prescription copayment and then insurance will pay for the rest. Others require you to reach your deductible before they pay for anything. To avoid any unexpected costs, call your insurance company and have a representative walk through your entire list of medications.
  3. Try to secure an HSA.

    A standard CF clinic check-up can run anywhere from $700 to $1500 before your insurance starts to cover it. I learned this the hard way when I had to pay for a visit out of pocket before I met my deductible. Coming up with that kind of money isn't always easy, but a Health Savings Account (HSA) can help. An HSA lets you deduct money from your paycheck tax-free and use it to pay for medical expenses.

    If you know your job-based plan doesn't offer an HSA, ask your employer to consider adding it. I've had one employer say “yes” and another say “maybe next year.” Either way, there's no harm in asking.
  4. Take advantage of resources.

    CF is stressful, expensive and difficult to navigate on your own. Luckily, you can call the Cystic Fibrosis Foundation's patience assistance service, Compass. They are happy to provide information around insurance coverage, assistance resources, disability and social security.

    Drug companies often provide assistance for some of the more expensive CF drugs. If you don't have assistance and get hit with a high medical bill you can't pay in full, call your care center about a payment plan. Your clinic or hospital most likely has options available, and the interest rates on those payment plans are typically much lower than with most credit cards.
  5. Know your options.

    Like CF, life is unpredictable. Through it all, know your options. Whether your company is downsizing or you've decided to start your own thing, the Affordable Care Act makes the unpredictability of life a little easier for those of us who can't afford a lapse in coverage.

    If job-based insurance isn't an option or you have questions about the marketplace, call a local broker who specializes in picking out marketplace plans. They are (usually) a free resource and will provide information on plans, enrollment dates and costs.

Overall, there is no one-size-fits-all health insurance plan for CF. And while getting the right plan is certainly a necessity when you're chronically ill, don't let it get the best of you. A little preparation and research go a long way -- for your sanity and your wallet.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Ali has been a CF advocate for most of her life, raising funds with her family for Team AliKatz. She and her husband, Austin, are on the Cystic Fibrosis Foundation Tomorrow's Leaders board in Portland, Maine. Ali also works full-time for MamaSezz, helping people feel and eat better with plant-based meal delivery. She's a graduate of the T. Colin Campbell Plant-Based Nutrition Certificate Program. She lives on the coast of Maine with Austin and their best friend/dog, Sally. Connect with her on Instagram or her blog.

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