Analysis: The Formula Shortage Is Also A Disability Rights Issue

Photo by Lyosha_Nazarenko/iStock.

The baby formula shortage wreaking havoc across the United States is terrifying for any parent who relies on infant formula to feed their child. It’s especially calamitous for babies and children with special health care needs who rely on special prescription formulas that have also been impacted by the supply shortage. 

The shortage highlights an ongoing, systemic failure to ensure vulnerable children have secure access to medically necessary, life supporting products and equipment. Families with healthy infants who had previously never experienced this level of stress over finding a product that should be readily available are now facing a situation that is sadly the status quo for families of children with disabilities.

This shortage — precipitated by a major recall of infant and pediatric formula produced by manufacturer Abbott Nutrition in February — has received major media attention, most of it focused on families who can’t find the over-the-counter Similac baby formula brand. Less attention has been given to the supply crisis in specialty prescription formulas like Elecare and hypoallergenic formulas like Alimentum (both also part of the Abbott recall). These specialized, medically necessary formulas are designed for children with gastrointestinal disabilities who can’t tolerate traditional formula. The shortage of these products affects not only babies, but also children and teens with complex digestive problems and allergies. This includes children fed through a jejunal tube (a feeding tube that bypasses the stomach and feeds the child directly in the small intestine), children with serious allergic conditions like eosinophilic esophagitis or gastroenteritis, and children with intestinal malformations and malabsorption disorders. 

Jennifer McLelland’s son, James, at 6 months old with his grandfather, Gary Campbell. James was fully tube fed using a special formula as a baby due to a disability. Photo courtesy of Jennifer McLelland.

Very few companies make these specialty formulas. The Elecare recall has led to shortages across all available brands. What’s the alternative for these kids? There really isn’t one. If children transition to a standard formula, they risk further damaging their already fragile digestive system, serious illness or death. They can be admitted to the hospital for feeding through a central IV line, but this is a major, invasive intervention that dramatically increases children’s risk of infection and serious medical complications. On top of that, the nutritional products that hospitals use for this procedure are also in short supply. 

Because specialty formula is only available by prescription, there is no easy way for families to seek out an alternative supplier. If the local grocery store is out of regular baby formula, you can drive to another store. With prescription-only formulas, many families are required by insurance to use only one supplier. If that supplier can’t provide the product, parents and their kids are out of luck. Even if families could buy specialty formula without a prescription, the cost would be hundreds of dollars for just a few day’s supply.

Low-income families are disproportionately impacted.  The Women, Infants and Children program (WIC), the federal nutrition aid for low-income parents, issues coupons to families that need to purchase prescription hypoallergenic formulas such as Alimentum. These families are required to buy a specific brand and size of product, and any changes require a physician’s signature. California — and now the federal government – has relaxed these requirements and now allows families in the WIC program to purchase different sizes and brands without a prescription, and for stores to exchange recalled formula these families already possess. However, this requires every clerk at every store in the state to have read and understood the latest policy memo. From what I’m hearing in my discussions with parents, many clerks have no idea the policy has changed. This means children may be going hungry or parents may be risking their children’s health by switching to over-the-counter formulas with ingredients that could cause them to have painful diarrhea, skin rashes and difficulty breathing.

Families with limited financial resources face numerous other disadvantages in the search for formula: They’re less able to pay inflated prices for specialty formula, drive to multiple locations to check stock and make online purchases. In desperation, some families are trying to stretch the formula they can find by diluting it with more water. This is dangerous. Infants can have seizures due to electrolyte and water imbalances from diluted formula, and they can become malnourished. 

At this point in the supply crisis, finding formula is a zero-sum game. For every family that secures a scarce can of formula for their child, another child will go hungry. I participate in several online support groups for parents of children with disabilities, where parents will often help each other out by sharing supplies. But as the shortage grinds on and the posts from families desperate for specialty formula multiply, offers to help have essentially dried up. 

Much of the media coverage has focused on what families should do to manage this problem as individuals. This is deeply flawed. The formula shortage is a result of systemic failure, and there are no individual solutions. Children with disabilities and medical complexities simply cannot survive in a country where the supply chain for critical, life sustaining products like specialty formula isn’t stable. President Biden has done the right things in the short term — activating the Defense Production Act to speed production and streamlining WIC rules for alternate purchases. 

But families of children with special health care needs are weathering this formula shortage at the same time that they are weathering shortages in other critical, life sustaining equipment. American sprang into action to fix the formula shortage when it started impacting healthy infants. We need the same energy and policy response to resolve the shortage of specialty formulas and other supplies for children with disabilities.

Jennifer McLelland has a bachelor’s degree in public policy and management from the University of Southern California and a master’s degree in criminology from California State University, Fresno. She worked for the Fresno Police Department in patrol for eight years. She is currently a stay-at-home mother and paid caregiver through the In Home Supportive Services program.  She is active in advocating for disability rights and home- and community-based services.

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