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.
How We Advocate for the CF Community
Alongside the cystic fibrosis community, we advocate for access to highly specialized CF care, programs, agencies, and policies that help advance research and drug development. We also raise awareness about the disease.
The Cystic Fibrosis Foundation's policy and advocacy work is grounded in five principles that drive our decision-making process and prioritization efforts.
Whether by passing health care legislation or determining budgets, federal and state governments play an important role in CF research, drug development, and access to care. At all levels of government, we empower the CF community to engage with their representatives on issues affecting their health.
The Foundation is a leading patient advocacy voice on Capitol Hill. We carefully monitor and analyze federal legislation and administrative proposals to help shape policy decisions that benefit people with cystic fibrosis.
In 2019, Chad Riedy, an adult with cystic fibrosis, testified at a U.S. House of Representatives Education and Labor Committee hearing about threats to insurance coverage that workers with pre-existing conditions face. The hearing focused on the impact of the Affordable Care Act (ACA) on insurance provided by employers. Riedy advocated to keep critical health care protections included in the act such as a ban on annual and lifetime coverage caps, limits on out-of-pocket expenses, and the option for young people to stay on their parents' insurance plan until age 26. His testimony also provided insight into the robust drug pipeline supported by the research and development championed by the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
“I am here today with hope for the future -- a future where I grow old with my wife and see my kids grow up, graduate college, get married, and start families of their own. This is all because of the access that I have had to adequate and affordable coverage and the protections that the ACA has provided,” Riedy said. “I am not asking you to take care of me, as I am already doing that myself. I understand that the law is not perfect, but the protections it contains are critical to me and millions of other Americans with pre-existing conditions.”
We also work closely with the Congressional CF Caucus to garner support of elected officials to fulfill our mission to find a cure and help all people with cystic fibrosis lead fuller, healthier lives. The caucus includes more than 130 bipartisan members who raise awareness of cystic fibrosis; support CF research, drug discovery, and development; encourage collaboration between the public sector and private organizations; and support access to quality, affordable cystic fibrosis care.
We help ensure states fund programs critical to people with CF. The Foundation also engages with insurers, such as Medicaid, to promote coverage decisions that support access to high-quality, specialized care.
Along with community members in Ohio, we have consistently advocated for funding for the Children With Medical Handicaps (CMH) program, which covers critical CF treatments and care that may not be covered by private insurance. Around 40,000 Ohio families rely on CMH to supplement their insurance and enable access to the lifesaving care they need. As a result of our advocacy, programs like CMH remain a meaningful resource for people with CF despite unpredictable state budgets.
“[CMH] helps families whose children are fighting life-limiting genetic diseases receive comprehensive support in navigating insurance markets and coverage plans … [CMH] keeps families working and keeps them out of medical bankruptcy.” -- Kim Mathews, spouse of an adult with CF, during her testimony on April 10, 2019 before the Ohio House Finance Subcommittee on Health and Human Services
We partner with the NIH on research that builds the foundation for critical new therapies for CF and other diseases. Working with the FDA, we have supported the modernization of clinical trial design to make it work for patients with rare diseases, provided expert advice during drug evaluations, and encouraged efforts to streamline the process for approving safe and effective therapies.
We also work with the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services, and their state regulatory counterparts to ensure that regulatory policies support access to health coverage for people with cystic fibrosis.
Each year, we encourage CF community members to ask their members of Congress to continue robust funding for the NIH and FDA. Thanks to advocates in the CF community and beyond, we have seen significant increases in funding for both the NIH and FDA in recent years. The Foundation also advocated for the passage of the Expanding and Promoting Expertise in Review of Rare Treatments (EXPERRT) Act, which was signed into law in 2012. This legislation included measures to increase participation by patients and external experts in the FDA's review of new drugs for rare diseases such as CF. In 2015, the Foundation successfully advocated for the passage of the Ensuring Access to Clinical Trials Act, which allows people living with rare diseases to participate in clinical trials without fear that the additional compensation may make them ineligible for government benefits.
As the health care landscape rapidly evolves, courts play an important role in reviewing policy changes. When appropriate, the Foundation weighs in on health care-related court cases to explain their impact on patients.
For example, in 2018 a federal judge in Texas ruled in Texas v. United States that the ACA was unconstitutional because of the repeal of the individual mandate in December 2017. In the week after the decision, the Foundation mobilized more than 2,000 CF community members to ask their members of Congress to act swiftly to restore protections for people with pre-existing conditions. The CF Foundation also filed an amicus curiae (friend-of-the-court) brief in this case, as in others, to advocate for people with CF.
Through CF Foundation Compass, the Foundation provides a free, personalized service that helps people with CF handle insurance, financial, legal, or other issues. It is through Compass that the Foundation truly understands the personal impact and prevalence of issues in the health care system. The Compass and policy teams work closely together to examine health care trends, identify widespread access issues, and elevate them to the attention of state and federal policymakers.
As an example of this collaboration, Compass case managers alerted the policy team to several challenges people with CF and care center teams were experiencing with California's Genetically Handicapped Persons Program (GHPP), a program that provides health coverage to adults with specific genetic diseases, including cystic fibrosis. The policy team reached out to program officials at GHPP to discuss the experience of the CF community. Now, Compass case managers, the policy team, and GHPP program administrators are discussing how to manage these issues and find solutions for the future.
We frequently partner with other patient advocacy organizations to educate policymakers about the impact of health care proposals on the millions of Americans living with rare and chronic diseases.
In 2018, we partnered with the American Heart Association, the Leukemia & Lymphoma Society, the American Lung Association, March of Dimes, and other patient advocacy organizations to host a congressional briefing on the proposed short-term health insurance rule, which would likely drive up health care costs for people with cystic fibrosis. When the rule was finalized later that year, the CF Foundation joined 26 patient groups to express disappointment over the administration's decision to extend the availability of these plans. We continue to monitor this issue in the states and seek opportunities to support legislation that limits short-term health insurance plans so people with CF have adequate and affordable health care options.
Volunteer advocates lead the charge in helping federal and state policymakers understand the needs of the cystic fibrosis community. Members of Congress want to hear from their constituents and understand how their decisions will impact people in their communities. To be an advocate, all you need is a passion for helping people with CF and the willingness to make your voice heard. CF advocates are active across all 50 states and Washington, D.C., and include people with CF and their family members, friends, and clinicians.
In 2017, health care reform became a hotly debated issue as the White House and Congress focused on repealing and replacing the ACA. Although the ACA is not perfect, it includes many critical protections for people with CF, including coverage for people with pre-existing conditions, prohibitions on lifetime and annual caps, and options for young people to stay on their parents' insurance plan until age 26.
For a rare disease, the CF community had an outsized voice in the debate. We partnered with other leading patient advocacy groups to call attention to the potential negative impact of the proposed legislation on people with CF and the millions of other Americans living with chronic conditions. CF advocates shared their stories during in-person visits with members of Congress and also through phone calls, email, social media posts, and local opinion pieces in newspapers.
Because of the mobilization of patient advocates across the country, we were successful in staving off harmful legislative changes and preserving important patient protections in the Affordable Care Act.
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Cystic Fibrosis Foundation
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