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.
Principles and Standards for Pharmaceutical Industry Interactions
Engaging with biotechnology and pharmaceutical companies is essential to reaching our goal of a cure for all people with cystic fibrosis. These principles and standards for Industry interactions safeguard our independence, objectivity, and ability to make decisions that are in the best interest of people with CF.
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead long, healthy lives. Engaging with biotechnology and pharmaceutical companies that are advancing CF-related research, therapies, and devices (referred to here as “Industry”) is essential to reaching our goal of a cure for all people with CF, as they develop and manufacture FDA-approved CF therapies and lead efforts to advance the next generation of treatments for CF.
We are committed to ensuring that the CF Foundation is free from undue Industry influence, and avoiding potential conflicts of interest.
We regularly evaluate our potential and ongoing interactions with Industry to ensure they comply with regulatory guidelines as well as our own internal standards for integrity and ethical behavior. In 2017, we implemented an enhanced set of principles and standards for Industry interactions to further safeguard our independence, objectivity, and ability to make decisions that are in the best interest of people with CF -- and to ensure that these interactions are transparent to the CF community and the public.
The CF Foundation, including our employees, officers, and trustees, are committed to the highest standards of conduct, integrity, ethical behavior, and compliance in all that we do. Our interactions with Industry are guided by the following principles to ensure consistent and clear application of these standards across our operations and to safeguard our independence:
Below is a summary of the ways we interact with Industry and for what purpose. We have extensive policies and procedures in place that govern all interactions with Industry to avoid and manage potential conflicts of interest.
The CF Foundation interacts with Industry to find new therapies and a cure for CF in the following ways:
The Foundation also participates in the following activities that are relevant to Industry, but free from Industry influence and do not encompass specific agreements or involve the exchange of funds:
To date, the CF Foundation has invested more than $3 billion in our fight against CF, resulting in groundbreaking treatments and a care model that is widely recognized as the gold standard for a complex, chronic disease. Achieving our goal of a cure for all people with CF will require continued fundraising, and we accept donations from Industry under the following circumstances:
We do not solicit or accept Industry support for advocacy and access efforts (including Compass), clinical trial development, guidelines development, educational materials, our network of accredited care centers, volunteer conferences, medical/scientific grants, or internal research.
In keeping with our mission, we provide support for people with CF and their families to access the high-quality care they need, including FDA-approved therapies. The CF Foundation plays no role in directing people with CF to specific treatments and we do not accept funds from Industry for any of the following activities:
Like many diseases that impact a small population, CF was ignored by the pharmaceutical industry for many years, despite decades of advances in basic science driven by the CF Foundation. In response to this unmet need, the CF Foundation pioneered our venture philanthropy model. Our approach is to provide upfront research funding, as well as scientific and clinical expertise, to reduce the technical and financial risk for pharmaceutical companies developing innovative CF therapies and encourage them to invest in treatments and cures for CF. Nearly every CF drug available today was made possible because of our model.
In some cases, the CF Foundation is eligible to receive funds from the sales of approved therapies or from potential therapies that were financially supported through our venture philanthropy, which enables us to fund new research to discover and develop drugs that will help more people with CF. In cases where these funds are, or are likely to be, significant, our approach is to sell our royalty rights when possible.
The most well-known and significant of these transactions resulted from a series of therapeutic discovery and development awards to Aurora Biosciences/Vertex Pharmaceuticals Inc. over a period of 12 years beginning in 2000. This contracted research resulted in the development of ivacaftor, the first therapy to address the underlying cause of CF, as well as other important disease-modifying treatments. In this case, the CF Foundation sold its royalty rights to CF treatments developed by Vertex Pharmaceuticals Inc. to Royalty Pharma for $3.3 billion in 2014. Under terms of the agreement with Royalty Pharma, it is possible the Foundation may receive additional funds in future years.
The proceeds from the monetization have provided the CF Foundation a tremendous opportunity to accelerate our mission as never before and expand our investments in research, care, and patient programs. In fact, our funding of research and medical activities has more than doubled since 2014, vastly increasing our potential to have a positive impact on the CF community.
We are concerned about the current approach to pricing drugs and the impact of cost on access for people with CF. As the price of treatments for CF continues to rise, we are increasingly seeing access restricted by payers.
Drug pricing is a complex issue that will require multiple stakeholders to address. Though we do not have a role in setting or negotiating the prices of individual therapies, our goal is to represent the needs of people with CF in ongoing discussions to define and implement an approach to pricing that will allow patients to have continued access to innovative treatments and support a health care system that achieves:
We are bringing data to the table to help define value in clinical practice and evaluate the impact of new therapies. We welcome the opportunity to bring the perspective of the CF community to this discussion and look forward to playing a role in finding solutions that support our goal of providing all people with CF with access to a cure and helping them live longer, healthier lives.
The needs of people with CF are at the heart of all that we do. In addition to ensuring we comply with applicable laws and regulations, our Policy on Industry Interactions governs the way we engage with Industry to ensure our commitment to our community and our high ethical standards remain uncompromised.
Revenue from Industry comprised approximately 9 percent of
the CF Foundation's total revenue for the year ended Dec. 31, 2018. Total
revenue for the CF Foundation during that period was $150.5 million.
*Industry includes biotechnology and pharmaceutical companies that are advancing CF-related research and therapies
**Other industry revenue includes revenue resulting from the other arm’s length transactions listed within the CF Foundation’s Principles and Standards for Pharmaceutical Industry Interactions
***Additional detail on 2018 sources of revenue is available in the CF Foundation’s public financial statements
****To achieve compliance with Nevada Senate Bill 539, and to provide increased transparency into our contributions from Industry for the year ended December 31, 2018, please see the following disclosure.
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