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.
Receiving a denial for a service or treatment from your insurance company can leave you with many questions. Fortunately, every insurer has a process, called an appeal, by which you can ask them to reconsider their decision to deny coverage.
There may be times when your health plan denies a treatment or service. While the denial may cause confusion or frustration, there is a process in place with every health plan to file an appeal if you feel the service was wrongly denied.
Denials are issued if your plan does not cover the service or treatment you or your health care provider requested or if your plan determines that the care is not medically necessary.
By law, the health plan must provide written notification:
Understanding what can and cannot be denied can make the process of filing a claim easier. Generally, coverage may be denied for the following reasons:
When appealing a denial of coverage, you need to work closely with your cystic fibrosis care team to ensure all required documentation is submitted. Here are some basic steps you and your care team may take when coverage is denied.
If a health plan denies payment for a service, the health plan is required to provide:
If an insurer denies a preservice claim, predetermination, or prior authorization, it will communicate the decision verbally to the health care provider and follow up with letters to both you and your provider. If the insurer denies a post-service claim, you will be notified by mail with an Explanation of Benefits (EOB).
An internal appeal is the formal process of requesting that the health plan reconsider, in a full and fair review, a decision to deny coverage of payment for a service.
It's important to note that you must file an appeal within 180 days of receipt of the denial letter. Once an internal appeal is filed, the health plan may:
In most cases, you can request a second-level appeal, or request for reconsideration. For individual and fully insured plans, the next level is often an external review. For self-funded group plans, the next level might be an additional internal review.
An external appeal is a reconsideration of an insurer's decision to deny coverage by an outside, independent organization. The external review is conducted by an impartial expert who is not a direct employee of, or who has no business relationship with, the health plan. If the case is urgent, it is recommended that you file an external review request at the same time as the internal appeal.
In most states, a written request for an external review must be filed within 60 days of the date the health plan sent a decision. Be sure to include all documentation required for the external review, such as:
The external review may:
External reviews are typically decided no later than 60 days after the request is received.
When you are considering an appeal, the first step is to ask your physician or CF care team if the denied service or medication is critical to your health. Anything that your physician feels is medically necessary should be considered for an appeal, particularly if there are any records showing that you need the treatment or if there are data showing that the treatment will help your health improve.
Sometimes a claim may be denied because you need prior authorization. This is a different issue that will require you and your physician to follow a separate process.
To increase your chances of winning an appeal, include as much medical data as possible in a letter of appeal. If you have taken the denied treatment or therapy before and already have medical data showing that the therapy is working or previously worked, it is important that you include this information in the appeal as well. To help make your case even stronger, you may want to have your letter of medical necessity come directly from a physician at your CF care center.
To learn more about claims and appeals, or to discuss if an appeal is appropriate, call CF Foundation Compass at 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email email@example.com.
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