People with Cystic Fibrosis at Higher Risk for Food Insecurity
Proper nutrition is crucial for everyone. Healthy foods fuel our bodies and minds, help us grow and thrive, and can even play a role in warding off disease. Unfortunately, millions of Americans don’t get proper nutrition because they are food insecure, meaning they can’t access or afford sufficient nutritious food.
Food insecurity is a particular problem among people with cystic fibrosis because their nutritional requirements are more challenging than the general population’s. Many with CF need to take in double the amount of food and calories as others due to an increased metabolic rate and pancreatic insufficiency, which hinders the absorption of essential nutrients. Spending on food is higher as a result.
Kim Reno, Cystic Fibrosis Foundation
“People with CF produce a thick, sticky mucus throughout the body,” explained Kim Reno, senior manager of Health Systems Innovation and Navigation, Cystic Fibrosis Foundation (CF Foundation). “That mucus keeps the digestive tract from absorbing the nutrients needed to maintain and gain weight. As a result, patients may be at risk for poorer health outcomes and decreased survival.”
Affording Care and Affording Food
Reno joined CF Foundation five years ago after spending 23 years as a clinical social worker in a CF care center. She was tasked with helping the organization tackle the issue of food insecurity and learned that food insecurity is a challenge for a number of reasons.
A 2019 study supported by CF Foundation and conducted by researchers from the Milken Institute School of Public Health at George Washington University found up to 33 percent of CF patients faced food insecurity and 20 percent were unable to afford the balanced meals recommended by their CF care team. While food insecurity was found to be most common among lower-income, non-working individuals with CF, it was also seen at higher income levels and among people working in paid employment.
“Even before the COVID-19 pandemic, when fresh fruits and vegetables started to become more expensive for everyone, we heard from CF clinicians that access to food was a problem for people with CF across all income levels,” Reno said. “Between out-of-pocket costs associated with frequent doctor appointments, and expensive medications and treatments, people with CF are often forced to make tradeoffs between their medical care and basic needs like food, rent and utilities.”
Screening for Food Insecurity
One of CF Foundation’s first initiatives to help reduce food insecurity among the CF population focused on increasing awareness of the issue among CF care providers. CF Foundation created a Food Security Committee comprised of doctors, dietitians, nurses, social workers, CF patients and family caregivers from around the country and began to collect data about how patients are screened for food insecurity.
They found that only about half of CF care centers were screening patients for food insecurity and that there were no formal or standard screening tools being used. The committee therefore focused their initial efforts on educating clinicians about the importance of food security and how to have probing, yet compassionate conversations with their patients about the issue. The goal was to have every CF patient asked about food security at every visit, using an evidence-based tool like the Hunger Vital Sign.
“Screening tools like the Hunger Vital Sign often ask patients to rate changes in their food security ‘in the last year’,” Reno elaborated. “But food insecurity can change on a dime. Food that is affordable and accessible one month may not be the next month. That’s why these conversations are so essential at every quarterly appointment, and why we need to collectively erase the stigma associated with food insecurity, because it can happen to anyone at any time. The clinic should be a safe space where patients feel comfortable answering questions honestly.”
As a result of its education efforts, CF Foundation has seen an increase in food security screening, with over 90 percent of care centers now conducting regular screening.
Pilot Program Gets Nutritious Food to Those in Need
As CF Foundation continues to conduct additional food insecurity research, it also is tackling the issue on the ground. In 2021, CF Foundation partnered with Food & Friends, a Washington, D.C.-area non-profit that provides home-delivered, medically tailored meals and nutrition therapy, as well as groceries and nutrition counseling, to people living with life-challenging illnesses.
Registered dietitians on the Food & Friends staff work in partnership with registered dietitians at CF Care Centers to design a diet high in calories, especially protein and fat, to address the complex nutritional needs for people with CF. The partnership focused on serving three targeted groups of CF patients, including pediatric patients, patients discharged from the hospital, and patients who are awaiting a lung transplant and are unable to shop and prepare food.
According to Reno, since the partnership started, referring CF care centers have reported a decrease in food insecurity and family stress among participants. CF Foundation is currently working to expand the program to other states.
“We also are compiling some out-of-the-box ideas from CF care centers to share with the provider community,” she said. “For example, one center helps its patients obtain hunting and fishing licenses. Others are creating food pantries in their centers and participating in ‘food gleaning’ programs that make imperfect produce – so-called ‘ugly’ fruits and vegetables that are considered not pretty enough for retail sale – available to patients at no cost.”
One-On-One Help
In addition to its work educating the provider community, CF Foundation provides one-on-one help to patients and their families through its Compass program. Accredited case managers – available by calling 844-COMPASS (844-266-7277), emailing compass@cff.org or submitting an online request form – help with complex challenges, including food insecurity; understanding insurance basics; troubleshooting insurance coverage issues; seeking financial assistance for medical care and other living expenses; finding answers to legal questions related to work, school, and disability/government benefits; and more.
“Health insurance can be particularly complex and challenging,” Reno said. “We help to make sure that patients are maximizing their benefits, so they don’t pay more than needed for their health care. This, in turn, frees money to use for food and other necessities.”
While the CF Foundation does not provide direct financial support to patients, it does refer patients to outside organizations that have support programs in place. One example of such an organization is the HealthWell Foundation, which provides financial grants to eligible patients to assist with out-of-pocket costs associated with CF treatments and CF vitamins and supplements.
“Many CF patients turn to liquid supplements to boost their caloric intake,” Reno said. “These products can be very expensive. In fact, during my days as a clinical social worker, it was not uncommon for me to see patients ‘hoard’ the shakes they received in the hospital to take home for later.”
Reno said she is proud of the work the CF Foundation has done to address food insecurity among its patient population, but that their work is just beginning and there’s a lot left to do.
“We’re in the process of expanding the initial focus of our Food Security Committee to other social determinants of health such as access to affordable transportation, housing and internet broadband,” she said. “We plan to launch a new committee this summer and will include people with CF and their families.”