Formula shortage is also a disability rights issue – California Health Report

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Photo by Lyocha_Nazarenko/iStock.

The shortage of infant formula that is ravaging the United States is terrifying for any parent who relies on infant formula to feed their child. This is particularly dire for babies and children with special healthcare needs who rely on special prescription formulas which have also been affected by the supply shortage.

The shortage highlights an ongoing systemic failure to ensure vulnerable children have safe access to medically necessary and life-saving products and equipment. Families with healthy infants who had never before experienced this level of stress to find a product that should be readily available are now faced with a situation that is unfortunately 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, primarily focused on families who cannot find the Similac brand of infant formula over the counter. Less attention has been paid to the supply crisis in specialty prescription formulas like Elecare and hypoallergenic formulas like Alimentum (both also part of Abbott’s recall). These specialized, medically necessary formulas are designed for children with gastrointestinal disorders who cannot tolerate traditional formulas. The shortage of these products affects not only babies, but also children and adolescents 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 into the small intestine), children with serious allergic conditions such as eosinophilic esophagitis or gastrointestinal -enteritis, and children with intestinal malformations and malabsorption disorders.

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

Very few companies manufacture these specialized formulas. The Elecare recall has resulted in shortages across all available brands. What is the alternative for these children? There really isn’t. If children switch to a standard formula, they risk further damage to their already fragile digestive system, contracting a serious illness or dying. They may be admitted to hospital for central intravenous feeding, but this is a major invasive procedure that greatly increases the risk of infection and serious medical complications in children. In addition to this, the nutritional products that hospitals use for this procedure are also scarce.

Since specialty formulas are only available by prescription, there is no easy way for families to find another provider. If the local grocery store is out of regular formula, you can drive to another store. With prescription-only formulas, many families are required by insurance to use only one provider. If that supplier can’t provide the product, parents and their children are out of luck. Even if families could buy specialty formula without a prescription, the cost would be several hundred dollars for just a few days supply.

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

Families with limited financial resources face many other disadvantages in finding formula: they are less able to pay inflated prices for specialty formula, travel to multiple locations to check inventory and make online shopping. In desperation, some families try to stretch whatever formula they can find by diluting it with more water. It’s dangerous. Infants may have seizures due to electrolyte and fluid imbalances from diluted formula, and they may be malnourished.

At this point in the supply crisis, finding a formula is a zero-sum game. For every family that secures a small box 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 often help each other by sharing supplies. But as the shortage continues and messages from families desperate for specialized formulas mount, offers of help have essentially dried up.

Much of the media coverage has focused on what families should do to deal with this issue as individuals. This is deeply flawed. The shortage of formulas is the result of a 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 essential life-saving products like specialty formulas is not stable. President Biden did the right thing in the short term — activating the Defense Production Act to ramp up production and streamlining WIC rules for alternative procurement.

But families of children with special health care needs face this shortage of formula at the same time as they face shortages of other essential life-saving equipment. American sprang into action to address the formula shortage when it began to affect healthy infants. We need the same energy and the same political response to solve the shortage of specialized formulas and other supplies for children with disabilities.

Jennifer McLelland holds 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 on patrol for eight years. She is currently a stay-at-home mom and paid caregiver through the Home Support Services program. She is active in disability rights advocacy and home and community services.

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