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.
A number of factors determine your eligibility for Medicare. Understanding the basics of enrolling in Medicare is the first step toward getting high-quality coverage and care for your cystic fibrosis needs.
Medicare is federally funded health insurance for individuals age 65 or older and for individuals under age 65 who have certain disabilities or conditions like cystic fibrosis. In order to get Medicare, you must be a U.S. citizen or permanent legal resident for at least five years, and fall into one of three basic groups:
In addition, each component of Medicare has its own enrollment and eligibility rules. By understanding these rules and how they work, you can ultimately learn more about how Medicare could apply to you.
Original Medicare (Parts A and B) Eligibility
Medicare Parts A and B, also known as Original Medicare, is intended to cover health care costs related to hospital and medical care. Some people will be automatically enrolled in Part A and/or Part B for the following reasons:
If you fall into one of these categories but have another form of insurance, it is possible to wait to get Part B if you waive your existing coverage by contacting Medicare. Otherwise, Part B benefits will start automatically and the premium will be deducted from your Social Security check each month.
In most cases, you will automatically be enrolled in Medicare Part A and receive Part A coverage for free if you or your spouse have paid Medicare taxes while working. However, those who have never worked or do not qualify for premium-free coverage may purchase Part A with a premium of up to $411 a month if they are:
Although they are not automatically enrolled, other people are still eligible to receive Medicare Parts A and B when they sign up for it themselves. To be eligible to sign up for Parts A and B, you must meet one of the following requirements:
To be eligible for a Medicare Advantage plan and/or Medicare Prescription Drug Plan, you will generally need to meet the following requirements:
To be eligible to purchase a Medigap plan, you:
However, it is important to note that in some states Medigap policies may not be available to individuals under 65 years of age.
Every year from October 15 through December 7, people with Medicare have the opportunity to change their health plans and prescription coverage. For people who wish to improve key elements of their Medicare Advantage and/or Part D plans, such as costs, provider network or prescription coverage, open enrollment is a time to make these changes without penalty.
During the open enrollment period, people can join a Medicare Advantage or Part D prescription plan for the first time or switch plans to better meet their needs and standards of care. In addition, open enrollment marks the time when you can go back to Original Medicare if you are not satisfied with your current plan.
For Original Medicare (Parts A and B), there are two main periods in which you can enroll: the initial enrollment period and the general enrollment period.
In some cases, the Center for Medicare and Medicaid Services (CMS) will allow for a special enrollment period in which you can change your plan or get coverage outside of open enrollment without having to pay a late enrollment penalty. For example, if you recently moved, lost your existing coverage or experienced other hardships, you may be able to qualify for special enrollment. However, each special enrollment period will have a different set of rules, so you should call Cystic Fibrosis Foundation Compass to learn more information.
However, each special enrollment period will have a different set of rules, so you should call Cystic Fibrosis Foundation Compass to learn more information. To contact Compass, call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email firstname.lastname@example.org.
In addition, it is important to note that if you qualify for Medicare Extra Help, open enrollment rules do not apply and you can sign up or change your Medicare Part D or Advantage Plan at any time throughout the year.
If an individual does not enroll in Medicare on first becoming eligible, he or she may be subject to a late enrollment penalty. For Part A, the late enrollment penalty is 10 percent of your monthly premium. This higher premium will apply for twice the number of years that you could have had Part A coverage but did not enroll. For Part B, the premium will go up by 10 percent for each 12-month period that you were eligible but did not sign up for Part B coverage. In other words, someone who did not enroll in Part A for two years would pay the 10 percent higher monthly premiums for four years. For someone who waited two years to sign up for Part B, the penalty would be 20 percent of the monthly premium for as long as that person is active on Part B.
For Medicare Part D, the late enrollment penalty is calculated by multiplying 1 percent of the “national base beneficiary premium” by the number of full, uncovered months during which the individual did not have Part D or creditable coverage. The monthly premium is then rounded to the nearest 10 cents and added to the Part D premium each month.
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