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.
Hearing your pharmacist say that a prescription isn't covered under your insurance plan is stressful, worrisome and frustrating. Fortunately, there are some steps you can take.
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As a lead case manager for Cystic Fibrosis Foundation Compass, I often get calls from people with cystic fibrosis and their families saying, “My pharmacy told me that my medication isn't covered.” It makes you anxious, it makes you worried and it makes you wonder how you are going to pay for the medication that you absolutely need. Rightly so! With a chronic condition such as CF, we all know how important it is to have timely access to prescription CF treatments and therapies.
Don't panic! There are steps you can take to help you understand insurance coverage.
The first thing to do is to call your insurance company and find out why the medication is not covered. Here are a few key questions you should ask:
Often a health plan requires a prior authorization both to ensure that certain medications are being prescribed for an appropriate use, and as a cost-saving measure. Although your doctor may simply call in the prior authorization over the phone, some health plans require the doctor to submit a prior authorization form. This process can take up to 72 hours for standard requests. Ask your doctor if he or she can submit an urgent request, which will be reviewed by the health plan within 24 hours. Keep in mind that even if the medication is approved, the approval may be valid for only a limited time, so it is important to plan your refills accordingly, giving that extra time for obtaining a prior authorization. You may be able to ask your pharmacist if your health plan will allow for an emergency fill, usually 10-15 days of supply, while you wait for your medication to be approved.
Another thing to consider is that your plan may impose quantity restrictions, which means that it will only cover certain amounts of a prescription. If your doctor is prescribing at doses higher than normal, the prescription may be denied. You will find that the quantity limits are common with pancreatic enzymes, as people with CF are often prescribed higher doses to maintain adequate weight and growth. Finally, your plan may also require a step therapy. This means that your doctor must clinically show that you have tried and failed taking a less expensive or preferred medication on the formulary before your plan will cover the prescribed medication.
If your plan is denying your medication because of coverage restrictions, first work with your doctor to see if an unrestricted covered medication will work for you. If it is medically necessary for you to take the prescribed medication, your doctor will need to make a formal request to override the coverage restriction by submitting a supporting statement to your insurance provider that the standard dosage or medication has been or is likely to be less effective than the one being prescribed.
A formulary is your health plan's list of covered medications. If your medication is not on the plan formulary, your doctor may ask for a formulary exception to cover the medication that is medically necessary for you. Your health plan may have a form for requesting a non-formulary medication or may require your doctor to submit a supporting statement that the non-formulary medication is necessary for treating your medical condition.
Your plan may only cover the generic and not the brand-name medication, as generic medications usually cost less. Don't be afraid to ask your doctor if the generic may be substituted for a brand medication. However, this may not be an option for some CF medications, such as pancreatic enzymes, for which a specific brand is medically necessary.
Quite a few people with CF and their families have called us with concerns about compounded medications not being covered under their plan's pharmacy benefits. Although insurance coverage for off-label use may vary from plan to plan, we have found that these compounded medications may be submitted for coverage under the plan's medical benefits.
So, we talked about some limitations imposed by your health plan that may delay insurance coverage for your prescribed therapies. If you are like many people with CF and their families who dislike trying to find insurance coverage, CF Foundation Compass case managers can take the burden off you. So talk to us about your specific situation and let us help you navigate through some of these coverage issues. You can reach us by calling Compass at 844-COMPASS (844-266-7277) or emailing us at firstname.lastname@example.org. We are here for you!
Senior Case Manager, Cystic Fibrosis Foundation
Yamini is a senior case manager for Cystic Fibrosis Foundation Compass, and has been with the Foundation since 2009. Yamini is a graduate of the George Washington University School of Public Health and has a master's degree in health services administration. She lives in the main line suburbs of Philadelphia with her husband and two children. A native of India, she enjoys cooking family meals with lots of Indian spices and herbs. Yamini can be reached at email@example.com or 844-266-7277.
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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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