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.
Medicaid plays an important role in helping one-third of adults with cystic fibrosis in the U.S. afford the specialized care and treatments they need to stay healthy.
The Cystic Fibrosis Foundation opposes any policy that prevents access to a critical source of health care coverage, such as Medicaid. Proposals that create barriers to Medicaid eligibility could lead to interruptions and delays in treatments and care for people with cystic fibrosis.
In 2017, the Trump administration issued a memo encouraging states to submit waiver proposals to pursue new Medicaid policies. The proposals -- including work requirements, lockout periods, lifetime limits on coverage, and premium payments -- could create barriers to Medicaid eligibility and access to critical coverage for people with CF.
Generally, the work requirements make Medicaid recipients verify their participation in community engagement or employment activities. Although many people who rely on Medicaid work, some people with CF may be unable to work because of the amount of time they need to spend on treatments and other activities to maintain or improve their health.
Many of the proposed work requirements include potential exemptions; however, the exemption requirements and application process are often unclear. People who qualify for an exemption may not understand how to apply or have the expertise to submit an exemption application, putting them at risk of being denied Medicaid coverage.
Some of the waiver proposals require Medicaid members to make a monthly premium payment. In some cases, people who do not pay the mandatory premiums within a certain grace period or do not renew Medicaid eligibility on time are subjected to coverage lockout periods. Some of the proposals limit the length of time an individual can receive Medicaid coverage by implementing lifetime limits.
In addition to the administrative burden on individuals with CF, these proposals would create additional administrative complexity and costs for states as they will have to devote more of their staff and resources to verify and document compliance and exemptions with these policies. For instance, Kentucky, Tennessee, and Virginia have estimated that adding a work mandate will cost tens of millions of dollars. These types of administrative costs will divert resources from the intent of the Medicaid program -- providing access to care to the state's most vulnerable citizens.
Medicaid is a vital resource for approximately one-third of adults with CF in the U.S. Without comprehensive health insurance, people with CF are more likely to have interruptions and delays in treatment and care, which can have serious short-term and long-term impacts on overall health. Any loss or gap in coverage may put people with CF at risk of declining health.
Implementing a coverage limit or lockout period for people with a life-threatening condition, like CF, because they were unable to satisfy work requirements, obtain an exemption, or meet premium payments, is excessively punitive. It also prioritizes spending cuts to Medicaid over people's health and well-being. Although we applaud state efforts to expand Medicaid, we oppose tying expansion policies to work requirements.
The Foundation is closely monitoring the implementation of these waivers and engaging with state policymakers to help ensure that people with CF who rely on Medicaid have access to the care and treatments they need. To stay informed about our advocacy work and to get involved, text “FIGHTCF” to 52886, or sign up online for the Foundation's Advocacy Alerts.
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