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 people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
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 challenging to navigate. By understanding the basics, you can take the proper steps toward getting the benefits and health coverage you need. Cystic Fibrosis Foundation Compass can help you understand Medicare and your options.
Medicare, a federally facilitated health insurance program, is an important coverage option for people with cystic fibrosis, especially adults who are receiving Social Security Disability Insurance (SSDI) payments. If you are no longer able to work due
to treatment burdens or other health-related issues, SSDI might be an option for you.
After two years of receiving SSDI benefits, you will be eligible for Medicare. Most people who receive SSDI do not have to pay for Medicare Part A (sometimes called “premium-free Part A”).
In addition, Medicare could be an option for:
Medicare is broken down into four “parts” that help cover specific services:
Learning how each of these parts works and what services they cover can help you choose the right Medicare plan for you.
The first component of Original Medicare (Medicare Part A) focuses on inpatient care. Each type of Part A services comes with its own set of out-of-pocket expenses and may require you to pay various deductibles, coinsurance, and copayments . Services typically covered
under Medicare Part A include:
To see the full list of services covered under Medicare Part A, visit Medicare.gov.
Medicare Part B, the second component of Original Medicare, focuses on medical services provided outside of hospitals and medical facilities. This includes doctor visits, outpatient services, some preventive care, and other medically necessary services.
Medicare Part B typically covers:
To see the full list of services covered under Medicare Part B, visit Medicare.gov.
To receive Medicare Part B, you are required to pay a monthly insurance premium. Most people pay the standard premium amount ($135.50 per month in 2019) if you sign up for Part
B when you are first eligible, which is automatically deducted from your Social Security check each month.
Out-of-pocket costs for Medicare Part B services vary. Generally, you will pay a deductible annually ($185 in 2019 and then 20 percent of the Medicare-approved amount for covered services, if you use providers who accept Medicare assignment. The Medicare
Part B deductible and coinsurance do not apply to some screening and preventive services.
Medicare Part C, also known as Medicare Advantage, is provided by Medicare-approved private insurance companies. Medicare Advantage plans:
While Medicare Advantage Plans are required to follow Medicare guidelines, the amount paid for deductibles, copayments, and/or coinsurance varies by plan. Medicare Advantage plans have an out-of-pocket maximum for Parts A and B. These plans usually have
network restrictions, limiting which doctors and hospitals you can use. These rules can change each year, and the Medicare Advantage plan must notify the enrollee about any changes before the start of the next enrollment year.
Medicare Part D, or the Medicare Prescription Drug Plan, is an optional benefit administered by Medicare-approved private insurance companies to help cover prescription drug costs. Those who wish to add Part D coverage to Medicare Parts A or B are usually
required to pay a monthly premium, which varies by the plan, household income, and the geographical area (zip code and state) of residence. 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 offered through the Social Security Administration to help people with limited income and resources with costs related to a Medicare prescription
drug plan. You are automatically eligible for Medicare Extra Help if you:
Medigap is insurance to cover Medicare deductibles and coinsurance. Medigap plans are offered by Medicare-approved private insurance companies and have several requirements:
Medigap plans cover only one person. Your spouse must have a separate individual policy.
Because there is no annual enrollment period for these plans, you can drop your supplement at any time.
Medigap plans strictly follow Medicare guidelines, which means they will cover your Medicare costs for Medicare Part A- and B-covered services only. These plans pay after Medicare pays.
Medigap plans are identified by letters A-N. Medigap Plan F is currently the plan with the highest level of coverage. It pays for all Medicare costs for covered services. Medigap Plan F is also offered as a high-deductible plan by some insurance companies
in some states. If you choose the high-deductible option, it means you must pay for Medicare costs up to the deductible amount before your policy will pay anything.
To look for specific Medicare Advantage plans or Medicare prescription drug plans available in your area, visit the Medicare Plan Finder. For more information about Medicare, download
the Medicare & You official handbook.
A Cystic Fibrosis Foundation Compass case manager can also help you find a plan that best suits your medical needs. Connect with Compass today at 844-COMPASS (844-266-7277), Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET, or email firstname.lastname@example.org.
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