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.
Food insecurity is a widespread problem that also touches the cystic fibrosis community. I should know -- I have experienced it myself and had to accept government assistance to buy food.
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Food insecurity is a long-standing problem in America. According to the U.S. Department of Agriculture (USDA), food-insecure households are those with “limited or uncertain access to adequate food.” This means someone is not eating enough nutritious food or possibly is going to bed hungry. Although food insecurity has been on the decline in recent years -- nearly 14 million households in 2019 -- it has surged due to the pandemic. Now, videos of long lines of cars waiting at food banks have finally brought national attention to the issue, as many families face worse food insecurity or lack the means to purchase adequate food for the first time.
Those of us in the cystic fibrosis community know that food is medicine. Proper diets are part of our treatment regimen, from tube feedings to a specialized meal plan. And we see a dietitian at least once a year at clinic to discuss our eating habits.
But did you know that as much as one-third of our community faces food insecurity?
To combat this issue, the Cystic Fibrosis Foundation has organized a Food Insecurity Committee to promote food security within the CF community by researching the incidence of food insecurity, raising awareness about food insecurity, and advocating for those experiencing this hardship.
The Supplemental Nutrition Assistance Program (SNAP -- formerly food stamps) provides a monthly allotment for the purchase of food. Many think that SNAP solves the problem of hunger; however, it does not. According to National Public Radio, over 35 million Americans faced food insecurity at some point last year. Feeding America reports, though, that nearly one-third of all food-insecure families earn too much to qualify for SNAP.
In the CF community, high medical expenses for people with CF, low disability incomes, and reduced employment could mean choosing between food, housing, or medicine.
I have participated in the SNAP program, so I would like to share my personal experience. First, SNAP paperwork is complex, and it is easy to make a mistake, like I did. I had to redo the paperwork and stressed for days waiting to hear back from the state agency on how to make it right. Second, the income limits are very low. For a single-member household, the gross monthly income limit is $1,383. Rent can consume about half of that before adding utility, transportation, and medical expenses, leaving very little for buying nutritious food. Third, the maximum benefit for a single person is $204, which includes an additional $10 offered during the pandemic. When a household earns more money, the maximum allotment is reduced. Fourth, every 6-12 months, applicants must prove their poverty. Records are scoured, forms are signed, and complex formulas are applied to ensure continued eligibility.
Although the numbers vary by state, one thing is common: legislators feel that the average cost for a low-cost nutritious diet is $1.30 per meal. However, Feeding America estimated the actual cost of a nutritious meal is $3.09 in their 2020 “Map the Meal Gap” report, which relied on figures from 2018. As a result of low benefit amounts, food-insecure households are less likely to be able to afford the protein, fruits, and vegetables to meet their nutritional needs.
Simply look at the price of making a salad versus a box of macaroni and cheese. I have had to curb my intake according to what was on sale, such as buying a package of hot dogs and hoping it would last me a week.
I certainly wonder how this impacts others who participate in the SNAP program as caloric intake and healthy food options are crucial to maintaining good CF health. The cost of buying healthy food can make that hard to achieve. In addition, the program expects recipients to prepare their meals at home. Planning, purchasing, and preparing a meal takes time and energy -- something many people with CF do not have after completing treatment regimens.
Because of this, I have developed a strategy to stretch my dollar. First, I take stock of items that I need. Second, I scour the sales at my local stores. Third, I typically shop on one day, and if I go to more than one store, I strategically plan to limit the distance because gas for my car is an added expense. This means monitoring the dates when sales are active -- some stores change their ads on Sundays, others on Wednesdays -- so I know to shop when my benefits become available. Finally, I search for coupons. I do my best to buy only items that have a coupon or are on sale. If I have a good day of shopping, I can save $20.
Grocery shopping exhausts me. Time at the store involves scouring discounted items, reading nutrition labels, and checking off items on my list, which means I can spend an hour or more at the store. Then factor in the physicality (walking, lifting, carrying).
Many times, after I shop, I need a nap from the stress of trying to get what I need with the limited physical and monetary resources I have.
Grocery pick-up was the perfect option for high-risk populations during quarantine, although not for those of us on SNAP. Local stores lacked the ability to process SNAP payments for contactless pick-up. During this time, if I did not go into the store, I could not use my benefits to purchase food. It took months for local stores to provide this option and even then, not all personnel were trained on using the program, so there were still problems using my electronic benefit transfer (EBT) card. Plus, it is harder to use coupons, purchase clearance items, and ensure proper pricing of sale items only using the pick-up option. So, my limited resources do not go as far when trying to do contactless pick-up.
Being on food stamps is embarrassing. Societal views of food stamps are so negative that people do not appreciate the assistance this program offers its recipients.
It is looked at as a handout for “lazy” people, not as a method to try to prevent food insecurity. Actually, the program helps those with disabilities, the elderly, and children, who make up 80% of SNAP recipients, according to the USDA. And even then, the program is not sufficient to prevent hunger in our country.
Typically, the only person who knows I am using my EBT card is the cashier; but, that does not mean that I do not get looks. Instead, from the minute other shoppers recognize the card, I feel judged. Before I leave the store, I review my receipt to ensure that I paid the advertised price. If I find an error, I immediately go to the customer service desk for a refund or price adjustment. I explain myself by saying, “Every bit helps!”, but that just covers my embarrassment because I really need that 40-cent discount. During these transactions, I feel guilty because I am not the hard-working person contributing to society; instead, I am someone who lives on entitlements. Funny thing is, I don't feel entitled. I feel shame.
Being on SNAP is fraught with emotions: embarrassment, anxiety, fear, shame, and depression. SNAP is the last resort for many who struggle with food insecurity. And if the pandemic has shown us anything, it has exposed the real numbers of food-insecure individuals and families in our nation.
If you or your family need to be connected to resources related to food insecurity, contact Cystic Fibrosis Foundation
Compass. Compass case managers can be reached by calling 844-COMPASS (844-266-7277) Monday through Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 3 p.m. ET, or email us at email@example.com.
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Adult with CF
Miss Brown is a 50 year old with CF who lives in Ohio and is part of the food-insecure CF community. She serves on the CF Foundation Food Insecurity Committee. She has long been an advocate for food insecurity screening to ensure those with CF have access to a healthy and nutritious diet.
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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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