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.
Navigating insurance for the first time can be difficult, especially if you have cystic fibrosis. Luckily, there are resources out there that can help.
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Transitioning to a new insurance company or coverage plan with cystic fibrosis can be an overwhelming experience. There are new policies, different co-pays, different deductible rules and people who need new information from you. And to make matters worse, the different parties involved rarely communicate with each other. You are the middleman who needs to make sure that everyone has the information they need and that things are running smoothly. Your health depends on it. This task is even more difficult if you are working with insurance companies and pharmacies for the first time, as I did at 21 years old. While starting out may be challenging, I will share four tips that should help make things seem a bit simpler and run more smoothly.
1) Figure out the basic rules about your deductibles and co-pays:
Let's start with some helpful definitions for newbies to insurance policies, courtesy of the online dictionary:
Now, here is an example to help you understand how changes in these two things can make a big difference: Previously my deductible was $2,500 per year, but the cost of my co-pays on prescriptions did not count toward this deductible. Now my deductible is $5,000 per year, but the cost of my prescriptions and copays DO count toward the deductible, which is quite easy to reach when you take Orkambi!
Co-pays differ drastically by insurance company. For example, I looked into my new insurance company and found charts online at www.needymeds.org to help me figure out how much each prescription would cost me.
This information tells me that I will have to pay $100 each time I order my enzymes if I have not yet reached my deductible.
Once you know the details about your deductible and co-pays, it is much easier to talk to pharmacies and the insurance companies, as well as decide if it is worth applying to assistance programs through the drug companies.
2) It is incredibly important to establish contacts at every pharmacy you work with, as well as with your insurance company.
If you have these contacts, it is much easier to get your questions answered without having to fumble through phone numbers and dial codes every time you need help. These contacts also help with getting the pharmacies and insurance company to work together to make sure that payments and shipments go down smoothly.
3) A great resource that I used while I was figuring these things out, especially since it was my first time trying to do this on my own, was CF Foundation Compass (formerly known as the Patient Assistant Resource Center, or PARC).
They are incredibly easy to contact over the phone, Monday through Friday 8:30-5:30 ET at 844-COMPASS (844-266-7277), or by email at firstname.lastname@example.org. Bruce, the super nice case manager, helped me by:
But the greatest thing about CF Foundation Compass was that they called me to follow up and make sure that their assistance actually did help me and if not, how they could work on finding other options for me. It felt like someone was finally on my side and understood how much trouble it is to figure this all out on your own. I thank them immensely.
4) The biggest tip that I can give you may be the hardest one … Don't be afraid to call or ask for help!
You need to remember to be persistent, because in the end you are the one looking out for yourself. Understanding and managing insurance can be a difficult task, but it is nothing you can't handle and it can be done without wanting to pull your hair out!
Adult with CF
Sarina is a recent graduate of North Dakota State University with degrees in public history and history. She hopes to use her love of writing and community engagement to share her story and experiences with other people with CF. Her goal is to answer questions and inspire 20-somethings to pursue their dreams, regardless of the obstacles.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
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