Where to Find Health Insurance Coverage for Cystic Fibrosis

Where to Find the Coverage You’ll Need

Receptionist taking patients insurance card in dentists office
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If you or your child have cystic fibrosis (CF), you need to have health insurance. There’s just no way around it. Medical expenses for someone with CF can easily add up to thousands of dollars per month. Without some kind of health insurance coverage, your resources will quickly be depleted and you will not be able to access treatment. Don’t let that happen to you. It can be difficult to find insurance when you have a life-shortening illness, but hopeless as it may seem, there are some options available to you.

Private Health Insurance - Your First Line of Defense

If you or your child were covered under a private health insurance policy before being diagnosed with cystic fibrosis, do everything in your power to keep it. Otherwise, you may run into problems with pre-existing condition exclusions when you get a new policy.

Federal law offers some protection for those who are changing jobs or otherwise have a break in insurance coverage by allowing a 63 grace period for securing new coverage. If you find new coverage within the 63 day time period, your new insurer cannot exclude pre-existing conditions as long as you can produce a certificate of credible coverage from your previous insurer. However, if you have a gap in coverage greater than 63 days, your new insurer can exclude coverage for up to a year for any condition that you received treatment for in the previous 6-months.

If you don’t already have private health insurance at the time CF is diagnosed, you will probably have problems finding private coverage.

If you are able to find a policy, you are likely to find that expenses related to CF treatment will not be covered for the first year.

Government Assisted Health Insurance

For those who cannot get private health insurance, there are several government programs that may be available. Options and requirements will vary from state to state, but each state has a program for families whose income falls below certain guidelines, which may be as much as 200% of the Federal poverty level.

If you don’t have access to private health insurance or your insurance does not adequately cover the cost of your CF treatment, apply for these programs even if you think your income is too high. Many of the programs allow those with chronic medical conditions to offset their income by deducting medical expenses or use other formulas that may reduce the amount of countable income.

  1. Medicaid

    Medicaid is a government-funded health insurance program that is available to those in the low-income bracket who are unable to afford private health insurance. The federal government requires all states to offer Medicaid, but each state runs the program differently. There are often many different types and levels of coverage. Contact your state Medicaid office for more information and application instructions.​​

  2. Social Security

    Adults and children with cystic fibrosis may be able to qualify for social security disability benefits including cash assistance, health insurance, or both. For children and adults who have never worked, eligibility is based on income and medical condition. Adults who have worked and earned social security credits can qualify for cash benefits regardless of their income as long as they meet the medical condition requirements.

    Medicaid provides the health insurance coverage for people with disability benefits. In most states, people who are eligible to receive disability cash assistance are automatically eligible to receive Medicaid, but some states require a separate application for Medicaid. Visit the Social Security Administration website to learn more or apply for benefits online.

    A word about appeals: If you apply for social security disability benefits, do not be discouraged if your application is denied. It is common for applications to be denied the first time they are submitted, and it does not necessarily mean that you do not qualify for benefits. Sometimes, the Social Security Administration just needs more information to be able to approve the application. If you receive a denial letter, it will include instructions on filing an appeal. You will have 60 days to file your appeal before the denial becomes official. Be sure to follow the instructions carefully and submit your appeal within the 60-day period.

  1. SCHIP

    Every state is required to have a State Children’s Health Insurance Program (SCHIP) that offers low-cost state-sponsored insurance to uninsured children. Eligibility requirements vary from state to state, but the program is designed to fill in the gap and provide coverage for children whose parents make too much money for Medicaid but cannot afford private insurance. Call the federal hotline at 877-543-7669 or visit Insure Kids Now to learn more about your state’s SCHIP program.