Formula Gap Forces Special Needs Families to Grow Supply Network

Kristina Kimani, whose daughter was born prematurely and requires a higher calorie diet, scours pharmacies in Massachusetts, endlessly refreshes websites, and solicits help from family and friends to get the specific formula she needs.

“It’s been very stressful trying to find my daughter’s specialty hypoallergenic formula,” she said. “Part of the issue, for example, if you want to have a salad and you want to use romaine lettuce and there’s none in the store, you can buy a different kind of green to make your salad. But when it comes to baby formula, that’s literally the only form of nutrition for your child.”

Families whose children have disabilities or specific nutritional needs have been hit particularly hard by the ongoing formula shortage that resulted from an Abbott Laboratories plant being closed over bacterial contamination earlier this year. Specialty formulas such as EleCare and Similac’s Alimentum are especially hard to find. In response, parents and doctors have created ad hoc networks to try to connect families with the nutrition vital for their children, even if it means cross-state road trips.

Abbott Laboratories manufactures both EleCare and Alimentum, and its Sturgis, Mich., plant remained closed in June due to a severe thunderstorm that caused power outages and flood damage.

‘We Just Need More’

Physicians said the emotional and financial toll on families with children who need the specialty formula has been daunting. Many doctors are working to connect their patients to formula exchange websites and nonprofit organizations. Others provided tools to help transition to other formula alternatives, but that is difficult since these children have a harder time digesting their food, said Alexa Mieses Malchuk, a board-certified family physician.

“With the way the shortage is going, sometimes families don’t have the luxury of transitioning slowly, which is another thing that we’re seeing is families are being forced to switch formula, formulations, or brands abruptly and, of course, that can cause stomach upset and some other side effects in their children.”

Clinics are also offering sample sizes of specialty formula on a first-come, first-served basis, according to Reed Dimmitt, director of the Division of Pediatric Gastroenterology, Hepatology, and Nutrition at the University of Alabama at Birmingham.

“We’ve known about the health disparities from a socioeconomic standpoint, but it’s especially highlighted now. We know about families who have driven across town or to another state, and I guess there’s something like a black market for this specialty formula too, but for families, especially the single moms, that don’t have them the means to do that, it’s harder for them,” Dimmitt said.

“It’s getting better, and hopefully this has peaked, but for now, it’s still a problem. This is more of an economic thing, than medicine, but we just need more. Bottom line.”

Kimani located some sample cans from her daughter’s clinic and pediatricians.

“I’ve been able to get several cans. So I don’t have to look this week or next week,” she said.

Moves From the Top

Advocacy groups like Little Lobbyists, which advocates for children with disabilities, have reached out to the White House and other federal agencies for better communication and updates, executive director and co-founder Elena Hung said.

“There’s not enough being said that doesn’t just impact infants and babies, but also children up to young adults. And this is about specialty formula that’s prescribed and is often accessed by durable medical equipment companies, who typically deliver it to our homes,” said Hung, whose daughter uses a feeding tube.

The Biden administration has taken steps to address the shortage. The Senate passed legislation July 21 intended to pause tariffs as much as 17.5% on some infant formula imports through December in hopes that makers in other countries will be more likely to export to the US and ease the supply crisis.

The federal government also invoked defense powers in May to fly in formula from overseas, importing more than 61 million bottles as of July 24.

The shortage also highlighted problems within the formula-making infrastructure, Malchuk said.

“Are the American people over-reliant upon a very small number formula manufacturers, if anything, that’s what this shortage of formula maybe highlighted,” she said.

“Yes, there are independent and new and upcoming formula companies, but again, they too can’t produce on the scale that is necessary to feed American children. And because a lot of these companies are smaller operations, there’s potential for their formula to also be just as expensive, if not more than the traditional formula.”

Only four companies are responsible for all of the baby formula in the US—Abbott, Perrigo Co., Nestle USA, and Mead Johnson Nutrition.

Abbott has been working with health-care professionals and releasing limited quantities of its amino acid-based and metabolic formulas to consumers in need free of charge, according to a spokesperson. The company said it also resumed production in Michigan July 1, starting with EleCare, which is slated for release in the coming weeks after it is thoroughly tested. Alimentum production is being prioritized at other manufacturing facilities.

“We are confident that we are producing safe, high-quality infant formula at all of our facilities as we have been doing for millions of babies around the world for decades,” an Abbott spokesperson told Bloomberg Law in an email.

“Additionally, as we’ve said, we’re making significant investments to ensure this never happens again. We plan to expand capacity and redundancy and we’ll invest in upgrading our processes and equipment.”

Until then, parents and caregivers like Kimani are left scrambling to find the nutrition their kids need, worrying about having enough while battling guilt over hoarding.

“If parents and caregivers happen to find something just by sheer luck, we then have to ask ourselves, ‘Do I buy it all up and not let some other baby have it because you’re afraid and you don’t know when you’re going to find it again, or do you leave some, so you’re not a part of the problem, but then have to continue to worry about feeding your own child?’”