Cystic Fibrosis and Health Insurance

Reviewed by: HU Medical Review Board | Last reviewed: September 2019

Finding health insurance that covers hospitalization, major medical coverage, and prescription benefits are vital for any person with a disabling chronic health condition, such as cystic fibrosis (CF). People with CF generally have significant healthcare needs throughout their lives with considerable costs.1

If you live in the United States, where the health insurance marketplace is particularly complex and expensive, being well informed about your health insurance options will help ensure that you and your family have access to the health services and financial protection you need.

Cystic fibrosis and insurance

A large proportion of people with CF are covered by federal or state programs. Many also receive help from patient assistance programs, due to the condition’s high cost of treatment.

Insurance coverage (2017)2

Type of insurance

Percent covered

Covered by private insurance
(under age 18)
Covered by private insurance
(18 to 25)
Covered by private insurance
(age 26 and older)
Covered by Medicaid/state programs
(under age 18)
Covered by Medicaid/state programs
(18 to 25)
Covered by Medicaid/state programs
(age 26 and older)
Covered by Medicare
(ages 30-35)
Covered by Medicare
(ages 40 to 65)
Individuals who participated in a patient assistance program

Understanding health insurance options

While you don’t need to be an expert when it comes to insurance, a basic understanding of some key concepts and terms will come in handy as you consider your health insurance options. Traditional fee-for-service health insurance plans work by allowing policyholders to obtain and pay for health services of their choice and get reimbursement by their policy provider according to the specific terms of their policy. One element of fee-for-service plans that appeals to consumers is that these plans allow them to choose their own provider.

Managed care health insurance plans contract with a specific network of health providers (doctors, hospitals, pharmacies, etc.) that offer services to policyholders. People with managed care plans usually pay lower fees for services provided within the allowed network. The three most common types of managed care plans are health maintenance organizations, preferred provider organizations, and point of services plans.

What are health maintenance organizations (HMOs)?

Health maintenance organizations (HMOs) are the most restrictive type of managed care plans. With an HMO, policyholders are strictly limited to providers and services within a specified network. Patients need referrals from their primary care physician (PCP) to see specialists, such as an endocrinologist. On a positive note, HMO premiums tend to be lower compared to other types of plans.

What are preferred provider organizations (PPOs)?

Preferred provider organizations (PPOs) provide another lower-cost option for obtaining care through a network of providers who have contracted with the health insurance company to offer discounted rates to policyholders. Patients are able to choose any health care provider, including specialists, without a referral. However, if they choose to receive care out-of-network, then they must pay for a larger portion of the costs. This type of plan accounts for most of the job-based group health insurance plans that exist today in the US.

What are point of service (POS) plans?

Lastly, some health insurance companies offer a point of service (POS) plan, which takes a hybrid approach combining elements of FFS, HMO, and PPO plans. With POS, policyholders can choose which provider to see each time there is a need for medical care and are not limited to a specific network.

Other insurance choices

Relatively new insurance choices are medical cost-sharing ministries or healthcare sharing plans. These programs generally have a strong religious component. They are not health insurance, but a group of people who share costs over the whole group. Generally, these programs require you to pay for your medical care upfront and submit the costs for reimbursement. Premiums may be lower than traditional insurance, but in practical terms, they exclude people with expensive-to-cover “pre-existing” conditions such as CF.

These programs are not regulated in the same way that insurance is regulated so you also don’t get the same consumer guarantees and protections you get with traditional insurance.3 In today’s health insurance market, managed care plans are much more common and fee-for-service plans are rare. Interestingly, Medicare is one example of a pure fee-for-service plan.

How do I know what I’m eligible for?

In the past, eligibility rules for health insurance plans were typically based on eligibility criteria or rules made by the sponsor of the plan spelling out who qualified for a specific plan. With the Affordable Care Act (ACA), eligibility rules have undergone significant changes. The tables shown below explain the basics of insurance eligibility by type of government or private plan.

Eligibility requirements for government insurance programs—including Medicare, Medicaid, Veterans’ benefits, TRICARE, Federal Employee Health Benefits Program (FEHB), State Child Health Insurance Programs (S-CHIPs), or insurance programs for employees of state and local governments)—vary by program.

Eligibility is determined by whether a person:

  • Qualifies for a government entitlement program, including Medicare or Medicaid
  • Was or is employed by a government agency, including the military
  • Is a family member of someone who works or worked for the government, who was eligible for such an insurance program

Many private health insurance plans include group coverage as a benefit of employment, membership in a union, or other organization, individual plans, high-risk health insurance pools, and Medicare supplemental insurance (sometimes referred to as Medigap plans).

Government Insurance Programs

Name of program

Description of program

  • Medical assistance entitlement program for people and families with low income, with benefits varying from state to state4
  • Provides coverage for a variety of long-term care services, including stays in nursing homes
  • Coverage for children in families that do not qualify for Medicaid
  • Source of coverage for most people 65 years or older
  • Medicare Parts A, B, C, and D, there are several options available for organizing and accessing care, including prescriptions, so it is important to get advice about Medicare options if you are eligible
  • People younger than 65 years who are disabled (including those with CF) may qualify*

*Must meet Social Security Disability Insurance or SSDI criteria. A 24-month waiting period is required before coverage begins.

  • Health benefit program for active duty and family, reserves (under certain conditions), retired military and family
  • Offers both fee-for-service and managed care plans
Federal Employees Health Benefits Program (FEHB)
  • Choice of health plans for federal, non-military employees and eligible family members
  • Available from date of enrollment without restrictions
  • May continue (under certain conditions) for employee and/or eligible family members beyond retirement and death of employee
State and local government employee plans
  • Health benefit plans for employees and eligible family members

Private Health Insurance

Name of program

Description of program

Group health plans
  • Offered to employees and often to family members
  • Choice of different plans typically offered
  • ACA offers employers an incentive to provide insurance to employees and penalizes large employers who do not
  • Can be either fully insured or self-insured*

*It is important to find out which type applies to you and what it means for your coverage. Unlike fully insured plans, self-insured plans are not regulated on a state level and this may affect you if there is a dispute concerning your legal rights as a member of the plan.

Individual and family plans
  • Purchased by individuals to cover themselves and their families
  • With ACA, these types of plans cannot be denied to someone on the basis of a pre-existing condition
  • Supplemental insurance that can be purchased to pay costs not covered by Medicare
State high-risk pools
  • Largely made obsolete by the ACA, covered state residents who are uninsurable due to a pre-existing condition
  • Most states have closed their pools to new enrollees or shut down the program altogether since the ACA mandates that pre-existing conditions be covered by insurance5
  • Temporary extension of coverage for people who lose employment-group health coverage through loss of employment, divorce, retirement, death of spouse, disability, or Medicare enrollment of spouse
  • COBRA refers to the health benefit provisions from the Consolidated Omnibus Budget Reconciliation Act of 1985.

Cystic fibrosis and the Affordable Care Act

The Patient Protection and Affordable Care Act (also referred to as the Affordable Care Act [ACA]) became federal law in 2010. Over a period of 10 years as the law is phased in, it has made a series of reforms to the health insurance system and the federal and state laws and regulations that affect that system. It is uncertain whether the federal government will dismantle the ACA or dramatically change it.

How does the Affordable Care Act affect people with cystic fibrosis?

If you have cystic fibrosis it is important to get the facts about what the ACA means to you now and what it may mean to you in the future. The US Centers for Medicare & Medicaid offers a website with the latest information on how the ACA may apply to you at the ACA website. It offers several useful tools for finding coverage, how to use your coverage, and suggestions for finding health insurance outside open enrollment dates.5

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