Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
Medicare can be difficult to navigate, especially when you have cystic fibrosis. By understanding the basics, you can take the proper steps toward getting the disability benefits and coverage you need.
Medicare is a federally-facilitated health insurance program for people over 65 who are receiving benefits from the Social Security Administration or the Railroad Retirement Board (RRB), people under 65 who are receiving Social Security Disability Insurance
(SSDI), or people receiving certain disability benefits from the RRB.
Medicare is an important coverage option for people with cystic fibrosis, especially adults with the disease who are receiving SSDI. If you are no longer able to work due to treatment burdens or other health-related issues, SSDI might be an option for
After two years of receiving SSDI benefits, you will be eligible for Medicare.
For more information about Medicare and disability, visit Medicare.gov.
Medicare offers five primary plan choices:
By learning how each of these parts work and what services they cover, you can ultimately understand how to choose the right Medicare plan for you.
The first component of Original Medicare, known as Medicare Part A, focuses on inpatient care. Services typically covered under Medicare Part A include:
To see the full list of services covered under Medicare Part A, visit Medicare.gov.
Each type of care may come with its own set of out-of-pocket expenses, such as
copayments or a
deductible. To understand more about the specific costs involved in Medicare Part A, call Cystic Fibrosis Foundation
Compass at 844-COMPASS (844-266-7277), Monday through Friday, 9 a.m. until 7 p.m. ET, or email
Medicare Part B, or the second component of Original Medicare, focuses on medical services provided outside of hospitals and medical facilities. This includes doctors' visits, outpatient services, some preventative care, and other medically necessary
services. Medicare Part B typically covers:
To see the full list of services covered under Medicare Part B, visit
To receive Medicare Part B, you are required to pay a monthly insurance
premium. This means that you must pay a certain amount of money each month in order to get and maintain Part B medical insurance coverage. Most people pay the standard premium
amount ($134 per month in 2017), which is automatically deducted from their Social Security check each month.
Medicare also requires you to meet an annual deductible. Until this pre-determined amount ($183 in 2017) is satisfied, Part B will not begin to pay a percentage of any medical
insurance-related costs. Once you have met the deductible, you will then generally be responsible for 20 percent of the bill, while Part B will pay 80 percent of the Medicare-approved amount for the covered service. However, the deductible does not
apply to all services, so you may want to discuss the exact benefits and financial implications of this with a CF Foundation Compass case manager.
Medicare Part C, also known as Medicare Advantage Plan, is provided by Medicare-approved private companies. Medicare Advantage Plans combine all benefits and services listed under Parts A and B, and usually include Part D (prescription drug coverage).
Plans may also include additional benefits and services such as dental, vision, hearing, and wellness programs.
Although Medicare Advantage Plans are required to follow Medicare guidelines, insurance companies can charge different out-of-pocket costs or have their own rules for how services are provided, such as an
out-of-pocket maximum, a referral requirement to see a specialist, or a limited
provider network. These rules can change each year. The plan must notify the enrollee about any changes before the start of the next enrollment year. For
this reason, it is important to find out how each Medicare Advantage plan works by
conducting a benefits assessment each year or talking to a CF Foundation Compass case manager.
To learn more about Medicare Advantage Plans, including some of the reasons why Medicare Part C might be a good option for you, check out the following resources:
Medicare Part D, or the Medicare Prescription Drug Plan (PDP), is administered by Medicare-approved private insurance companies to help cover the cost of prescription medications. Medicare Part D is an optional benefit. Those who wish to add Part D coverage
to Medicare Parts A and/or B are usually required to pay a monthly insurance premium, which will vary by plan, income, insurance provider, and state. However, most Medicare Advantage Plans include Part D.
If you decide to enroll in a Medicare PDP, you will receive a Medicare Part D card that looks like this example.
Medicare Extra Help is a program offered through the Social Security Administration that helps with prescription drug costs through Medicare Part D. To qualify for
Extra Help, you must have an income under 150 percent of the federal poverty level (FPL), meet the resource limit, and live in the United States. Medicare Extra Help is not available in Puerto Rico, the U.S. Virgin Islands, Guam, the Northern Mariana
Islands, or American Samoa.
If you have not already enrolled in a Medicare Drug Plan (Part D), you must join one to use Medicare Extra Help. If you do not select a Part D plan, Medicare may automatically enroll you in a plan that may or may not cover all your medications.
In addition, some people will automatically qualify for Medicare Extra Help if they have Medicare and they:
If you qualify for Medicare Extra Help and join a Medicare drug plan, you may:
* For Alaska and Hawaii, see
the U.S. Federal Poverty Guidelines, U.S. Department of Health & Human Services.
If you are insured under Medicare Part A and Part B, you are always expected to share the cost for health care services such as copayments, coinsurance, and deductibles. Because Medicare Parts A and B do not cover all services in full, Medicare Supplement
Insurance (Medigap) policies are available to help you pay for some of these costs. Medigap plans, which are offered by Medicare-approved private insurance companies, require that you already have Part A and Part B to enroll, and pay a separate premium
in addition to your monthly Part B and Part D premium. You will need to purchase a separate Part D plan to cover prescription charges, as the Medigap plans that became effective after June 1, 2010, no longer include prescription coverage.
Medigap plans will follow Medicare guidelines, which means they will not cover the charges that are not covered by Medicare Part A or Part B, nor prescription charges covered through Part D. If you already have a Medicare Advantage Plan (Part C), you
will not be able to purchase a Medigap plan unless you are switching back to Original Medicare.
To purchase a Medigap plan, you can go to any insurance company or a broker that is licensed to sell one in your state. In some states, however, Medigap policies may not be available to individuals under 65 years of age.
To learn more about Medigap plans, visit Medicare.gov.
The chart below shows basic information about the different benefits that Medigap plans cover.
The chart below shows two main options for how you get your Medicare coverage.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails