Four Ways to Conquer First-time Insurance Issues With CF

Navigating insurance for the first time can be difficult, especially if you have cystic fibrosis. Luckily, there are resources out there that can help.

Feb. 23, 2016 | 5 min read
Headshot of Sarina Sandstrom Lynn
Sarina Sandstrom Lynn

Transitioning to a new insurance company or coverage plan with cystic fibrosis can be an overwhelming experience. There are new policies, different co-pays, different deductible rules and people who need new information from you. And to make matters worse, the different parties involved rarely communicate with each other. You are the middleman who needs to make sure that everyone has the information they need and that things are running smoothly. Your health depends on it. This task is even more difficult if you are working with insurance companies and pharmacies for the first time, as I did at 21 years old. While starting out may be challenging, I will share four tips that should help make things seem a bit simpler and run more smoothly.

1) Figure out the basic rules about your deductibles and co-pays:

Let's start with some helpful definitions for newbies to insurance policies, courtesy of the online dictionary:

  • Deductible: a specified amount of money that the insured must pay before an insurance company will pay a claim.
  • Co-pay (copayment): a small fixed amount required by a health insurer to be paid by the insured for each outpatient visit or drug prescription.

Now, here is an example to help you understand how changes in these two things can make a big difference: Previously my deductible was $2,500 per year, but the cost of my co-pays on prescriptions did not count toward this deductible. Now my deductible is $5,000 per year, but the cost of my prescriptions and copays DO count toward the deductible, which is quite easy to reach when you take Orkambi!

Co-pays differ drastically by insurance company. For example, I looked into my new insurance company and found charts online at to help me figure out how much each prescription would cost me.


This information tells me that I will have to pay $100 each time I order my enzymes if I have not yet reached my deductible.

Once you know the details about your deductible and co-pays, it is much easier to talk to pharmacies and the insurance companies, as well as decide if it is worth applying to assistance programs through the drug companies.

2) It is incredibly important to establish contacts at every pharmacy you work with, as well as with your insurance company.

If you have these contacts, it is much easier to get your questions answered without having to fumble through phone numbers and dial codes every time you need help. These contacts also help with getting the pharmacies and insurance company to work together to make sure that payments and shipments go down smoothly.

3) A great resource that I used while I was figuring these things out, especially since it was my first time trying to do this on my own, was CF Foundation Compass (formerly known as the Patient Assistant Resource Center, or PARC).

They are incredibly easy to contact over the phone, Monday through Friday 8:30-5:30 ET at 844-COMPASS (844-266-7277), or by email at Bruce, the super nice case manager, helped me by:

  • Connecting me with resources that could help with paying for prescriptions and applying for Social Security Benefits. I ended up being approved for the co-pay assistance program that they referred me to, and am now working on getting benefits through Sufian and Passamano, LLP, paid for by the Foundation!
  • Referring me to a regional case manager (the very gentlemanly Aaron) who helped me look into ideas for assistance with my student loan payments (many of these offers exist based on what field you are going into).

But the greatest thing about CF Foundation Compass was that they called me to follow up and make sure that their assistance actually did help me and if not, how they could work on finding other options for me. It felt like someone was finally on my side and understood how much trouble it is to figure this all out on your own. I thank them immensely.

4) The biggest tip that I can give you may be the hardest one … Don't be afraid to call or ask for help!

You need to remember to be persistent, because in the end you are the one looking out for yourself. Understanding and managing insurance can be a difficult task, but it is nothing you can't handle and it can be done without wanting to pull your hair out!

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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Headshot of Sarina Sandstrom Lynn

Sarina is a licensed school counselor, creator, traveler, and advocate who is passionate about mental health, curiosity, and intentional living. She lives with a grateful heart in Minneapolis, Minnesota with her partner, Kasey, and can frequently be found dancing, eating amazing vegan food, and adventuring around the world. Stay connected with Sarina on Instagram.

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