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.
If you have cystic fibrosis like I do, then you know how important it is to protect our health care. That's why we must advocate for three key policy principles that are critical to allowing people with CF to access the high-quality, specialized care we need.
April 9, 2018
How My Poem Monster Describes My Journey With CF
Stuff Our Care Teams Say
For the past eight years, the Affordable Care Act (ACA), while not perfect, has provided protections for those of us with pre-existing conditions. These protections have included not being denied insurance because of having cystic fibrosis and not having annual or lifetime limits. While the ACA remains the law of the land, recent actions by the Trump administration aim to undercut these protections.
When I was born in 1981, my parents were told they should not expect me to live to see my 12th birthday. We did not have therapies like hypertonic saline, inhaled antibiotics,
or the vest, and CF transmembrane conductance regulator (CFTR) modulators were a pipe dream -- if they were a dream at all. Today, 36 years later, I have graduated from college,
married the love of my life, and am a father to two incredible boys.
Roughly three months ago, I started taking tezacaftor/ivacaftor (Symdeko™) through an early access program; within one month, I saw my lung function increase by 5 percent. This may not seem like a lot to some, but when your lung function is at 28 percent,
that 5 percent is the difference between being able to carry your kids up the stairs to bed at night or carrying them around when they are tired, and not being able to do all of the normal “dad duties.”
Access to drugs like tezacaftor/ivacaftor -- coupled with the highly specialized care I receive from my CF care team -- has given me and my family hope: hope that I will grow old with my
wife, hope that I will see my boys graduate from high school, go to college, find love, and maybe even start families of their own. Being denied or given restricted access to the drugs and care I need would be denying me and my family this hope. It
would be denying all of us the hope of living long, full lives.
This begs a very important question to be asked, answered, and acted upon: What does the CF community need from Congress, and why are these needs critical for our security and wellbeing?
As one of the Foundation's newly appointed national advocacy chairs, I explain our policy priorities below and why they are critical to allowing many people, like me, to live longer, fuller lives.
Like me, you may be on private insurance through your parents, your employer, or your spouse or significant other and wonder why Medicaid is important to you. In addition to the fact
that 50 percent of children and roughly one-third of adults with CF rely on Medicaid, many of the accredited CF care centers around the country rely on Medicaid funding as well.
CF care centers, such as the clinic I attend at Johns Hopkins Hospital, are located in regional hospitals or universities and rely on Medicaid funding to provide services and care. I would not be the healthy, successful CF patient I am without my care
team, which includes my doctor, my physical therapist (who makes sure my airway clearance techniques are on point), and the mental health specialist (who
helps me through the anxiety and depression).
I also meet with a pharmacist, who helps ensure I have the right medicines, and a social worker, who helps with any other issues I may have. All of these people are an integral part of my care team and help me stay as healthy as possible.
The administration has proposed expanding the use of short-term insurance plans from 90 to 364 days. While the higher out-of-pocket costs and limited coverage do not make these plans ideal for many of us with CF, the expansion of these plans is likely
to divide the individual insurance market into two categories: one for the healthy and another for the old or chronically ill.
The result is likely to be higher medical costs for those that rely on the individual markets for their insurance and, in some cases, cause insurers to leave the marketplace altogether due to these high costs.
Lastly, a slightly brighter spot in all of this is the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Many members of Congress agree that both the NIH and FDA are vital pieces in the discovery, development, and delivery
of research and drugs that not only impact our community, but the country as a whole.
Although I knew they were valuable, I did not truly understand the important role the NIH and FDA have played in the progression of the treatment of cystic fibrosis. If it wasn't for the NIH, the discovery of the molecule that led to the creation of CFTR
modulators may not have happened. The benefits that I, and many others, have experienced would be merely a dream. The FDA has been a crucial partner in making sure the CF community gets access to these drugs in a timely manner.
Together, the FDA and the Foundation have found unique and creative ways to broaden access to these drugs. It is important that both the FDA and NIH remain funded so that we can continue to make enormous strides to cure and fight cystic fibrosis.
What can our community do to protect ourselves and loved ones?
Health care for cystic fibrosis patients must be protected. Right now, the best thing you can do is contact the administration and tell them to withdraw the short-term insurance rule. You can do this easily and quickly through the Foundation's Phone2Action page -- it will take less than three minutes but will make a big difference in our fight for adequate, affordable care.
Together our voices are strong, and we will make them heard.
Adult with CF
Chad is an award-winning grill master and amateur Lego builder who was born in 1981. He lives in Alexandria, Va., with his wife and two sons. Chad graduated from Wittenberg University, where he tended bar, traveled to Africa, and earned degrees in both history and African studies. In addition to being chair of Tomorrow's Leaders for the Cystic Fibrosis Foundation Metropolitan Washington, D.C. Chapter, he is a member of the Adult Advisory Council and National Advocacy co-chair for the CF Foundation. In addition he participates in the weekly vlog Staying Salty. You can find him playing baseball with his kids, doing CF treatments in his basement, and on social media. Follow @cjriedy on Twitter or Instagram.
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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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