Choosing Insurance Coverage for Cystic Fibrosis

Understanding insurance basics and knowing what to look for when choosing new health coverage can help you pick a plan that best suits your CF care needs.

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In this article
Summary
  • The Summary of Benefits Coverage can help you understand what services and treatments are covered and what costs to expect
  • When in doubt, confirm with the insurance company and don’t be afraid to ask for second opinions to ensure you understand your coverage

Understanding the basics of insurance and knowing what to look for can help you choose a plan that fits your health goals and personal needs. There are several key things to look for to can help you better compare and select your coverage.

Understanding Benefit Options

One thing you'll need to help you compare plans is the Summary of Benefits and Coverage, known as an SBC. Your SBC includes details on benefits, coverage, and costs.

Almost every health plan uses a network because it helps lower costs. A network is a set of doctors, hospitals, clinics, pharmacies, and other providers that have a contract with a health insurance plan to provide care at a reduced cost. Before you enroll in a plan, find out if your care center, laboratory, doctors, and pharmacies are in the plan’s network. If not, be sure you understand the plan’s policies and your costs for using a provider outside the network.

Every insurance plan that covers prescription medications has a drug formulary, which is the list of the medications the plan will pay for. You can access each plan's formulary on the insurance company’s website, by contacting the company by phone, or through your employer. Having a full list of your medications available will help you check the plan's formulary.

Once you have the plan summary, a website link, or a PDF document for the provider network and formulary, you can compare each plan's coverage. It can be helpful to view these side by side using the health insurance plan comparison chart. Let's look at some questions you might ask when considering a plan.

Cost-Related Questions

  • What is the monthly premium?
  • What is the annual deductible and when do I expect to reach it?
  • Do prescriptions have a separate deductible?
  • How often am I / my loved one hospitalized? Is it important to have a plan that offers low hospitalization cost-sharing?
  • What is the plan's out-of-pocket maximum? Does that amount include all services, like my deductible and prescriptions?
  • What much will I have to pay for each type of care — like prescriptions, hospital stays, lab tests, and visits to my care center?
  • Does co-pay assistance count toward my annual deductible and out-of-pocket maximum?
  • Will my family also be covered under this insurance plan? If so, how will that change the coverage pricing?
  • Does the plan cover out-of-network doctors, hospitals, and pharmacies? If so, what will my share of those costs be?

Benefit-Related Questions

  • Is my CF care team, hospital, and doctor in the provider network?
  • How are specialist visits covered? Is there a limit to how many visits are covered?
  • Is durable medical equipment (such as nebulizers and airway clearance devices) covered?
  • Which of my medications are on the plan's preferred drug list or formulary? Which medications are not?
  • Are specialty medications covered?
  • What pharmacies are in network?
  • Does the plan cover vitamins and nutritional supplements?
  • Does the plan require coinsurance for any services or treatments?
  • Are there benefits to using a mail-order or specialty pharmacy?
  • Does the plan cover diabetic supplies?
  • Does the plan cover inpatient hospitalizations and outpatient procedures? Are there any restrictions?
  • Does the plan cover in-home care? (This may be important if you use in-home IVs.)
  • Are mental health care and substance misuse services covered?
  • Does the plan cover physical and respiratory therapy?
  • Are transplant services and medications covered?

Access-Related Questions

  • When checking the formulary, do I see any specific restrictions on my medications, such as prior authorizations or quantity limits?
  • Do I need a referral to see a specialist? How easy is it to get referrals for specialists from my primary care physician? How long does each referral last?
  • What happens if my care center is not in-network? Is there a network exception?
  • What do I have to do in an emergency to ensure my care will be covered?
  • Am I covered when I travel or go out of state?

Tips for Communicating With Insurance Providers

Some insurance providers may not be fully aware of the realities of life with CF or of CF treatment options. Fortunately, there are some basic strategies that will help you talk to your doctor or insurance company and advocate for yourself:

  • Reach out for help as soon as you see a coverage problem. Waiting to resolve the issue or hoping that it resolves itself will only mean more time and complications down the road. You can contact your health care provider and Compass for assistance.
  • Get things in writing. If someone verbally tells you a service will be covered, make sure to get it in writing and keep it in your records.
  • Get multiple sources of confirmation or a second opinion. Don't be afraid to call multiple people or providers to confirm any piece of information.
  • Get a name and phone number. Taking down the name and phone number of the person you are speaking with can help streamline the process for following up and create a greater sense of accountability.

Get Help 

Choosing insurance coverage can be hard. If you need help:

  • Partner with your CF care team and Compass for help finding and comparing options.
  • Learn more about selecting the right plan for you with Navigating CF.
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Topics
Insurance | Managing Finances
Downloads
Plan Comparison Checklist Download (PDF)
2026 Changes to Marketplace and Medicaid Download (PDF)
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