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.
It is important to understand that having a lung transplant can be expensive before, during, and after the transplant. Your health insurance may cover many of the costs, but not all of them.
Lung transplant requires payments be made by insurance and patients and their families. Some examples of costs for which you may be fully or partially responsible include:1
Members of the transplant team, such as the center's financial coordinator and social worker, can help you develop a plan to pay for all of the transplant-related expenses, including and especially those not covered by your insurance. Here is a list of questions to ask your center's financial coordinator.
Cystic Fibrosis Foundation Compass is a personalized service that can help you with insurance, financial, legal, and other issues. You can contact Compass at any point to learn more about financial assistance programs to help you afford a transplant. You can contact Compass at:
Monday - Friday, 9 a.m. - 7 p.m. ETcompass@cff.org
Insurance coverage, and the amount of money you have to pay, varies by type of insurance. Most health insurance and government programs, including Medicaid, will pay for a lung transplant, although it may not cover all of the costs. Medicaid, however, will only cover transplants in the state from which you receive it. For example, if you receive Medicaid in Ohio, your transplant would need to be done at a center in Ohio.
If you have Medicare or Medicaid, contact your insurance representative to find out what your policy will cover. More information about Medicare and transplant coverage is available on the Medicare website. Medicaid coverage differs by state. For more information about your policy, see the Medicaid website. CF Foundation Compass can help you understand what is covered and what the costs are regardless of what type of insurance you have.
If you have private insurance, such as one through your job or a family member's job, contact the company to find out if there are any limitations to your coverage or specific requirements related to transplant. Review a list of important questions to ask your insurance company.
You also may be eligible for Social Security Disability, which provides a monthly income. The Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs provide assistance to people with disabilities. Although they are different programs, they are both managed by the Social Security Administration. SSDI and SSI allow people who are deemed disabled to access Medicare and Medicaid, but there are several things you should keep in mind, including:
It is also important to realize that SSDI may stop about one year after transplant if you are no longer considered disabled.
Ask a Compass case manager, the financial coordinator at the transplant center, or your social worker for more information about applying for Social Security Disability.
Your financial coordinator or social worker may be able to put you in touch with nonprofit groups that provide financial assistance to transplant recipients. Many such organizations are listed in this Financial Resources Directory available from the United Network for Organ Sharing (UNOS).
Most insurance companies will cover the cost of the transplant itself. Other hidden expenses, however, such as transportation to and from your transplant center or relocation costs, can quickly add up and make it difficult for many with CF and their families to afford a transplant on their own. Organizations such as Children's Organ Transplant Association (COTA), which also helps adults, can help you or your loved ones deal with these extensive costs by organizing fundraisers, reaching out to local communities, and generating support to help cover transplant-related expenses. This can help eliminate many of the financial barriers standing between you and the lifesaving transplant you need.
Another option is to raise funds yourself to help pay for transplant-related expenses. There are organizations that help transplant patients establish personal websites to raise funds. Your financial coordinator or social worker can help you identify an organization that is appropriate for you. A list of important questions to ask when choosing a fundraising organization is available from UNOS. However, this kind of fundraising can affect your eligibility for income-based programs, such as Medicaid.
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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
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800-344-4823 (toll free)
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