by Rosie Garvey
Food insecurity is a pressing issue that affects people across the United States, in rural and urban communities alike. According to the most recent national data, in 2024, 13.4% of households in the US experienced food insecurity. This means that at some point throughout that year, 13.4% of US households were unsure where their next meal would come from due to lack of money or other resources. In that same year, 5.4% of households reported severe food insecurity, meaning they found themselves consistently reducing food intake as a result of lack of access to food.
The most recent widespread data for the CF community collected in 2019 found that 33% of families with someone with CF experience food insecurity, this is almost triple the national average. This is indicative of CF families needing to make tough decisions weighing the costs of nutritious food against transportation to doctor’s appointments, medical expenses, prescriptions, and all the other daily costs of living with CF, on top of general costs like housing and utilities. Additionally, CF can cause patients or their caregivers to be unemployed or underemployed, making the financial strain even larger.
In addition to the causes of food insecurity being exacerbated, so is the impact. Nutrition has been a cornerstone of CF care for decades. Maintaining adequate weight and nutritional status helps support healthy lung function, immune health, growth, and overall quality of life. Research has long demonstrated that achieving a healthy weight early in childhood is associated with improved pulmonary outcomes, slower disease progression, and increased survival among people with CF. As a result, nutritional management has long been considered one of the most important components of comprehensive CF care. Food-insecure CF patients also report higher levels of depression and anxiety than those who are food secure, which can also have a negative impact on overall health outcomes.
It is also worth noting that despite the prevalence of CFTR modulators improving rates of CF patients being underweight, it is as important as ever to keep food security in the conversation. Food insecurity is not just not enough food, it can be not enough food for a healthful, balanced diet. Often, food choices with less nutritional value are cheaper and more accessible to food-insecure families. Even with the shifting tide of the relationship between CF and malnutrition, access to healthful food still remains just as important as ever.
Studies have found that the act of screening patients for food insecurity itself can have a positive impact on food insecurity levels, and that screening people verbally as opposed to in writing has an even stronger positive impact. It helps open the dialogue with patients and potentially decreases any stigma they might be feeling. Some patients report shame around their food insecurity status or needing to receive financial assistance, and the conversation alone can help target that. There are also increased nutritional needs for people with CF, specifically those with pancreatic insufficiency or reliant on tube feeding, that might mean someone who would otherwise have the resources to maintain their diet cannot.
Bringing awareness to the issue of food insecurity in the CF community allows CF Clinics and organizations to combat the food insecurity issue through different channels. Clinics are being equipped with resources on SNAP benefits and other grant programs that support people with the financial burden of nutritious food. Even the awareness that someone is not the only one experiencing an issue can lighten the burden.
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