Girl with a nebulizer inhaling aerosolized medicine

By G. Brown

In 2019, researchers from the Milken Institute School of Public Health at George Washington University administered the “Cystic Fibrosis Health Insurance Survey.” This survey is conducted periodically to assess health status, access to medical care, and insurance plans for those in the CF community. The most recent survey included nine new questions to assess medical cost burdens, food intake changes and the usage of programs designed to provide support. The additional questions were included in part to study the incidence of “Food Insecurity” (FI) in the CF community. It is important to note that the survey was conducted with support from the Cystic Fibrosis Foundation prior to the release of Trikafta™ and before the COVID-19 pandemic. 

In reviewing the results, the staggering find is that about 10,000 people with CF – or 1 out of 3 – experienced FI within the 12 months preceding the survey. This is three times the national average! The survey results show that FI does not discriminate. For example, income is not a determinant of FI because 7% of those earning over $150,000 experienced FI. Even 9% of those who self reported as “living comfortably” experienced FI.

While those dependent on governmental insurance programs faced FI at higher rates, nearly 20% of those on private insurance did as well. High treatment burden can lead to medical debt and those with medical debt experienced higher rates of FI. About one-third of respondents under the age of 17 and over the age of 36 faced FI; as did nearly 40% of those between the ages of 18 and 35. Employment status does have an impact: nearly 60% of those on disability faced FI. However, of those working over 30 hours per week, 22% still faced FI. There are numerous startling numbers in the survey results and it is important to fully understand what food insecurity in the CF community looks like. 

Imagine this: one out of every 5 respondents of this survey had trouble paying for food. About 20% lacked the funds to purchase the foods to adhere to the diet prescribed by their care team. Others ran out of food and lacked resources to purchase more. Many cut the size or even skipped meals because there was not enough food to meet their nutritional needs. Sadly, some parents went hungry to ensure their child with CF did not. Yet, the rates for those who obtained help were relatively low compared to the indicated need.

What can we do? We can reduce the stigma of getting help. It would be surprising if the incidence of FI in the CF community did not increase in the wake of COVID-19. The pandemic shed light on the increasing need for improving national support programs, and expanding the number of food banks and other resources to eliminate hunger in our country. We need to ensure that those in the CF community who face FI have information on and access to the resources near their homes.