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.
As the health insurance industry continues evolving, many in the CF community have noticed the addition of copay accumulator programs as part of their coverage. What are copay accumulators and what is the best way to approach and understand this new coverage caveat?
May 23, 2019
Doing Better By Doing Less
Finding a Place in the CF Community
There is a new phrase in insurance vernacular. Maybe you've heard it. Or, you've seen it in action when you went to get your last prescription filled. The phrase is copay accumulator; and it can mean big changes to the real-life, out-of-your-pocket costs for care.
What is a copay accumulator?
To help explain what a copay accumulator is, and what its financial impact might be, you need to understand two details of your current health insurance plan:
The manufacturers of many CF medications have copay assistance programs in place to offset the amount you owe for those medications, also known as the patient responsibility. In the past, some health insurance plans allowed members to count the total assistance received from these programs toward their annual deductible and out-of-pocket maximum. With copay accumulator programs, that's no longer the case.
Here's an example:
In 2018, you filled one of your more expensive prescriptions the first week of January. The copay assistance you received from the manufacturer helped you reach your deductible right away, and even got you to your out-of-pocket maximum. With your deductible and out-of-pocket maximum met for 2018, your plan picked up 100 percent of the cost whether you were filling other prescriptions, going in for a check-up, or getting some other covered service.
In 2019, your coverage stayed the same, but your plan's policy on copay assistance changed. Because of a copay accumulator program, you are no longer able to have the copay assistance you receive count (or accumulate) toward your deductible and out-of-pocket maximum.
To be clear, you can still use the copay assistance you receive. But without the dollar value of that assistance “accumulating,” you may not hit your deductible or reach your out-of-pocket maximum for the year as quickly, if at all.
Bottom line: Your responsibility, the amount that comes out of your wallet for care, may be more. The impact of this change may be felt especially by those with high-deductible plans, high coinsurance or cost sharing, or high out-of-pocket maximums.
Does your plan have a copay accumulator program?
To find out if your plan has a copay accumulator program (sometimes referred to as coupon adjustment, benefit plan protection, or even out-of-pocket protection), start with the plan's Member Handbook or Policy Service Agreement, or contact CF Foundation Compass. A case manager will help you research the details of your current plan, identify any accumulator programs, and identify ways to help pay for unexpected medical costs incurred because of a copay accumulator. Compass cannot provide direct financial assistance, but we can try to connect you to local or national resources that may be able to help free up other financial responsibilities and ease the burden left by a copay accumulator.
What if I want to change my plan?
Everyone, regardless of their plan, will have an opportunity to assess their insurance options during their annual open enrollment period. Compass case managers are here to help you review your plan options and get the information you need to make an informed decision. Otherwise, you are unable to switch plans unless you have a qualifying event such as marriage or a new job.
We know that many people with cystic fibrosis and their families face complicated issues related to getting the care they need. The way copay accumulators are changing the current insurance environment can certainly add to those complications. Compass is here to make sure no one has to navigate these changes alone. Contact a Compass case manager today. A dedicated, knowledgeable CF Foundation case manager is ready to work with you, one-on-one. This expert guidance is free and confidential. Call us at 844-COMPASS (844-266-7277) or email us at firstname.lastname@example.org.
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Compass Case Manager, CF Foundation
Karen Carey is a Compass case manager. She has worked for the CF Foundation since spring 2015 and is based out of the Rocky Mountain Chapter. She was instantly inspired by the resolve of the CF community to find a cure and feels privileged to share that purpose. Karen received her bachelor’s degree in sociology and law, politics, and society from Drake University.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site 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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