Financial Burden of Medically Necessary Foods and Special Diets: A Better System Is Needed
- John Holahan
- Jul 17
- 9 min read
There is a simple way we could improve a lot of people’s lives and save our medical system a lot of money. We should provide more support for medically necessary foods and special diets. Our current system has a problem. We don't provide financial support for simple dietary changes. These changes help manage certain diseases. They also prevent costlier interventions later on. Our current system results in poor compliance, increased complications, higher healthcare costs, and lost productivity. Not to mention the emotional toll on the families involved.
To understand the point I’m trying to make, we are going to have to jump into some very specific and very technical discussion about some current regulations. Please humor me for a moment. Right now the difference between ordinary food and “medical food” is defined in the Orphan Drug Act. This is where we will find the definition of foods termed “medical foods”. The term “medical food” is “a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation”.
That’s a mouthful! And I could spend a lot of time explaining what it means in its entirety, however, the key phrase for our purposes today is “for which distinctive nutritional requirements … are established”. When products or diseases have distinctive nutritional requirements, then our system helps cover the costs associated with these products. However, when a disease or the foods required to maintain people’s health do not have a distinctive nutritional requirement, they are considered normal food that becomes the financial responsibility of the patient or their family and will not be covered by insurance..
The requirement for a distinctive nutritional requirement is short-sighted and in the end very costly to both families and our healthcare system.
For example, people with swallowing disorders or dysphagia, instant food thickeners like SimplyThick® EasyMix® are very important to their health. Without a thickener, many people with dysphagia can not control their food and drink and swallow it safely. Thickeners help make regular foods and drinks into foods and drinks that are safe to eat. Thickeners help keep people safe and healthy. They prevent expensive complications. However, because there is no distinctive nutritional requirement for dysphagia, instant food thickener is considered a food and not a medical food.
The British have a term for products like thickeners: borderline substances. They understand that some products fall between being a food and a drug. An intervention can work well, even if it doesn't meet certain nutritional needs. These kinds of items aren’t about lifestyle choices. They’re about survival. We need a better way to support people with manageable diseases. Simple and low-cost dietary changes can help.
Insurance coverage for dysphagia supplies in the U.S. is inconsistent and generally poor. Most insurance companies won’t pay for dysphagia-related items. This creates a heavy financial burden for patients.
Dysphagia products are not the only areas where we aren’t taking the bigger picture view. Take people with Celiac disease. They don’t choose to eat gluten-free food. They have to eat gluten-free food. And most gluten-free food is more expensive. They have no choice about whether to spend the extra money for their quality of life. For Celiacs, Gluten-free food can prevent a lot of gastric discomfort and even hospitalization. In our system, this cost burden falls solely on the family. Some countries, like Italy, see this as a disease. They offer financial support or tax credits to help Celiac patients with the extra costs.
Another example is people with phenylketonuria (PKU) who are experiencing similar financial issues. PKU is a genetic disorder that needs lifelong care. This involves a strict low-protein diet, daily meds, and regular blood tests to check amino acid levels. These measures are required to prevent brain damage. The incidence of PKU in the United States is 1 in 25,000 newborns or 275 newborns per year.
Patients with PKU and their families often struggle with the high costs of special foods. They also need a lot of time to prepare meals to manage the condition.
The gap in coverage for needed non-food items, like thickeners, GF food, and PKU foods, adds more financial stress for families with special diets.
When people do the right thing and stay healthy, we don’t help them. But when they do the wrong thing and get sicker and get hospitalized, we help them. This doesn’t make sense.
Economic Impacts of Disease
Families with a relative who has dysphagia face economic strain. This includes higher healthcare costs from longer hospital stays. They may also need post-acute care. Additionally, caregivers might lose income due to time spent managing the patient's needs. This all places a substantial burden on the family unit and healthcare system.
The economic burdens of celiac disease and PKU are often underestimated as well.
Many believe that Celiac patients only face high costs for gluten-free food. But, the economic effects are more complex, spanning the entire healthcare system. These impacts include:
Increased healthcare utilization due to complications and underlying conditions
Reduced productivity at work and school
Direct and indirect impacts on patients, caregivers, and society
Potential for acute and long-term complications
Celiac patients face direct costs when using a gluten-free diet for treatment. It’s something that’s absolutely necessary. Yet, it's also associated with lower quality of life. Direct financial costs to the patients increase.
Some patients with lower socio-economic status are negatively affected. They often are unable to afford continuing the diet. Many families struggle to afford healthy fruits and vegetables in today’s economy. Add to that, patients with dysphagia, celiac, or PKU are up against additional costs of managing their disease.
What people don't understand is how there is a burden on the healthcare system as well. These patients often have underlying health issues. There are direct costs related to healthcare services and medications. This strains the medical system.
Celiac patients often have other health issues, even after diagnosis. This results in increased health visits for psychiatric care and musculoskeletal symptoms. Many patients need a dietician's help. Gluten-free food often lacks the nutrients found in wheat-based options.
Gluten-Free Diet Costs and Reimbursement
In the United States, staple gluten-free foods cost much more than wheat-based ones. Gluten-free cereals, pastas, and snacks cost about 139% more than regular wheat products.
Celiac sufferers in the UK say they pay 35% more for groceries. They often need to visit multiple stores to find what they need, which takes a lot of time.
Food is much more expensive which makes adhering to a special diet more difficult. In the UK, from March 2022 to March 2024, gluten-free bread cost four times more. Some bread items were three times more expensive. Plain flour pastas and cereals were twice as expensive.
Some countries offer reimbursement for gluten-free food.
Some patients in the UK with gluten-free food prescriptions often visit several supermarkets. This is because they can't always find all the items they need in one place.
In Canada, Norway, and Sweden, Celiac patients can get refunds for gluten-free food. The refund varies by payment type, amount, and eligible products. In Canada, you can claim the price difference between gluten-free and regular wheat products as a medical expense on your taxes.
Prescriptions for gluten-free foods have been recognized in the UK since 1960. But in 2018, changes were rolled out, allowing prescriptions only for bread and mixes for breads and rolls.
The United States? Currently, you can deduct extra costs for gluten-free foods. But this only works if the deduction is more than 7.5% of your adjusted gross income.
Impact of Food Prices on Celiac patients
Rising prices for fresh fruits, veggies, and gluten-free foods put a strain on those with celiac disease.
Studies show that families in the U.S. spend more on healthy foods. This includes fruits, vegetables, nuts, whole grains, and lean proteins. In contrast, processed meats and refined grains cost less. Households with a celiac patient spend an even larger portion of their income on food.
Many people with lower incomes spend more on food. This makes them sensitive to high food prices. They often face a tough choice between affordability and nutrition. They might eat more foods with fat, sugar, and salt. This means they often miss important nutrients, especially in many gluten-free products.
Dieticians recommend choosing naturally gluten-free foods instead of processed foods. This can help improve the health of celiac patients. However, following this advice can be hard due to the cost of these natural foods. Relying on processed foods can cause health issues. These problems then add strain to the healthcare system.
Economic Impacts of PKU
Shopping for and making special PKU diets can stress families. Data on low-protein medical foods and access to the drug Kuvan are the driving issues.
Some families in the US found that the annual cost of the low-protein diet was $4,000 for special formula for babies. In a 2020 survey, parents reported that annual costs for special formulas were over $7000. The cost of low-protein foods was over $1200, annually.
PKU takes an emotional toll on a family and can limit the time parents are able to spend at work. Parents report missing three to five workdays a year. Some parents even reported leaving the workforce to take care of their children. So many other things are affecting these families.
Other Conditions That Need Special Diets
People with celiac disease, swallowing disorders, and PKU aren’t alone. Many need special diets, which can raise their food and healthcare costs.
Several other medical conditions require specific dietary requirements, leading to similar financial burdens. Some people with diabetes, food allergies, inflammatory bowel disease (IBS), or autism spectrum disorder (ASD) may find a special diet helps manage their symptoms.
These needs can raise food costs. They might also increase healthcare costs. Some may need advice on nutrition and support for health problems linked to their diet.
You might say some of these conditions shouldn’t even be part of this discussion. Changes in diet for someone with diabetes or with hypertension, for example, aren’t life-or-death situations. Or at least not as urgent a danger to life as someone who needs to stick to diet rules for safe swallowing or someone on the celiac diet.
But tell that to those who deal with ASD, IBS, and other diseases mentioned above.
Still, perhaps we’re more likely to affect change in our legislature for insurance coverage or a tax credit for conditions like dysphagia, celiac, and PKU because of the life-or-death nature of their needs.
It would be a great start.
How Can We Advocate for Change?
Patients with dysphagia who have trouble paying for food thickeners can find help. Organizations like the Dysphagia Outreach Project offer support. This organization offers help for low-income individuals with dysphagia by providing thickeners, pre-modified foods, therapy tools, oral care products, and adaptive equipment.
Celiac advocacy groups such as the Celiac Disease Foundation (https://celiac.org/) and the National Celiac Association provide support for those with celiac.
The National PKU Alliance (NPKUA) and the Children’s PKU Network provide resources, support, and advocacy for PKU research and care.
We need a better process and standards here in the U.S. to recognize and support these nutritional needs. The current system is failing sensitive individuals. We need to rethink how we classify non-therapeutic foods. We also need to find ways to help people afford them.
We need to rethink or expand the definition of “medical food.” Special food needs are important for health, longevity, and our society.
Want to express your concerns about necessary non-foods and special diet foods not being covered by insurance? Try using the 5 Calls app to contact your legislature about these issues. See notations in the resources below on where to find out more about this app and how to use it to get your voice heard. You can find 5 Calls in your Google Play or Apple Store app stores.
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Resources
Harwell, D. (2025, February 11). This app helps you call your representatives—fast. The Washington Post. Retrieved from https://www.washingtonpost.com/technology/2025/02/11/5-calls-app-call-representative/
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