Baby food shortages life-threatening for some older children and adults

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Eight years ago, after a routine pinprick on her newborn daughter’s heel revealed a rare feeding disorder, Sarah Chamberlin was concerned about the costs and the insurance dispute that would ensue. But she never dreamed that the nationwide supply of metabolic formula that keeps her daughter alive would fall short.

That changed after Abbott Nutrition recalled the formula and closed a factory. Now Chamberlin, whose daughter is on a low-protein diet, knows how to count cans, experiment with small amounts of potential substitutes and reassure eight-year-old Izzy. “We’re going to be able to get my milk, aren’t we?” Izzy sometimes asks. “And I say yes,” Chamberlin said. “Because it’s pretty much all I can say right now.”

The nationwide shortage of formulas has focused on the fate of infants. But some older children and adults depend on specially formulated powders, many of which are made by Abbott, to compensate for a variety of ailments, from malformed gut and allergies to problems processing nutrients such as protein. While most healthy babies can easily switch from brand to brand, a poorly chosen replacement for these people can either taste unbearable or lead to dehydration, seizures, and even death.

“It’s a cautionary tale about allowing a company to monopolize the market while serving a very sensitive population of customers,” said Tiffani Hays, the director of pediatric clinical nutrition education and practice at Johns Hopkins Hospital. The shortage started in February after revelations of bacterial contamination at the Abbott plant in Sturgis, Michigan, which the company closed. Four children became ill and two died.

The shutdown halted production of specialty products like the ones Izzy relies on. Izzy, who has the rare hereditary condition Phenylketonuria, or PKU, is an energetic tree climber when boosted with Abbott’s Phenex. Without it, her mood changes quickly and she loses focus. If she were denied it for any length of time, she would likely develop an intellectual disability and other serious health problems. Amino acid modified formula remains crucial into adulthood, especially for anyone considering conceiving, when uncontrolled PKU can harm a baby’s development.

Abbott announced on April 29 that it would begin releasing limited amounts of its metabolic formulas on hold, including Phenex. Last week, the company said it would release another widely used product, EleCare. The Sturgis factory will reopen on Saturday, with priority being given to the production of these and other specialty products, but it will take six to eight weeks for them to reach the people who depend on them. “Our number one priority is to provide babies and families with the high-quality formulas they need,” said an Abbott spokesperson.

How has the nationwide baby food shortage affected you?

For Hannah Dolins, 26, who was diagnosed with maple syrup urine disease, or MSUD, shortly after birth, the lack of formulas has brought into sharp focus the long-term systemic problems. Another rare, inherited disease diagnosed through baby screening, MSUD prevents the body from breaking down proteins in foods such as meat and fish, resulting in a build-up of toxins in blood and urine.

The mix of foods that Dolins takes, including Abbott’s Ketonex, an amino acid-modified formula, is administered under the care of a physician, making it difficult to stock up in preparation for emergencies. “I don’t know why we can’t have a small supply in case something like that ever happens again,” she said. “Just to make sure we can survive.”

Dolins said she wasn’t too concerned when the Abbott plant closed. She had already received her month’s supply and she didn’t think the closure would last long. But gradually, as the plant remained closed, she began to become more and more afraid.

“I was terrified. If this doesn’t open and I run out of formula, I would die. I would literally die,” said Dolins, who said 85 percent of her daily nutrients come from formula. She has rationed the powder and supplemented it with a Nestlé cooler that she can tolerate in small amounts. She also plays in the head through worst-case scenarios. “I may be hospitalized for a while. IV feeding will sustain me for a while,” Dolins said. “But eventually I’ll need my formula.”

Mark Corkins, a pediatric gastroenterologist at Le Bonheur Children’s Hospital in Memphis and chairman of the nutrition committee of the American Academy of Pediatrics, said four children suffering from medical complications due to the formula shortage have been temporarily hospitalized at Le Bonheur.

The closure of the Abbott plant isn’t the first time patients have worried about shortages, according to Chester Brown and Joel Mroczkowski, clinical geneticists at the same hospital. Tornadoes and other natural disasters have disrupted the supply chain. And just like during natural disasters, resupplying patients has been a “community effort,” Brown said, relying on health care providers and dietitians to coordinate with insurance companies to facilitate replacements in times of crisis.

Most of the patients he and Mroczkowski see are children, often spared from what used to be fatal illnesses through routine infant screening. Some patients with PKU stop taking the formula once they pass the critical point of brain development. But those who are thinking about conceiving should cut high-protein foods from their diet, monitor their intake of fruits, vegetables, and pasta, and return to drinking a medical formula. If not, the baby may be developmentally delayed or have heart and other birth defects. “We’re concerned about that,” Brown said.

Parents are faced with long journeys and empty baby food shelves

The reasons older children need formulas range from genetic diseases to structural problems like short bowel syndrome. Cecilia Perkins, of Collierville, Tennessee, took care of her son, Adonis, when he was 7 months old and adopted him last summer. A complex combination of medical conditions, including cerebral palsy and a traumatic brain injury as a baby, means he needs a special hypoallergenic formula, which is delivered into his stomach through a gastrostomy tube four times a day because he can’t swallow.

Adonis, now almost 4, relied on Abbott’s EleCare Junior. After that became unavailable, Perkins switched to Neocate Junior, made by Nutricia, not realizing that the sudden high demand for that product would soon put it on back order.

Then things got even trickier, as Perkins said her insurance only pays for formulas that come directly from the company. “I was frantically trying to find it online,” Perkins said, but found that the powder, which usually costs about $30 a can, had surged to about $80. Adonis now gets 40 grams of formula per day, in four separate feedings. A week’s supply would suddenly cost over $300.

The Perkins family came up with a strategy and switched to an unpopular flavor, fruit punch, of another Neocate product. “Nobody wanted it,” Perkins said. “But since it goes through a tube, Adonis doesn’t taste it.” At one point, Perkins said, they only had a day or two of formula. She felt her fears build as she wondered how she was going to feed her child and what would happen if she switched to a brand that Adonis couldn’t tolerate, and possibly sent him to the hospital for IV feeding support.

People who heard the story took to social media and offered unused cans and even financial support. “We’ve got three weeks,” Perkins said. “After that we don’t know anymore. Nobody wants their child to starve.”

The predicament resonated far beyond Collierville, Perkins said, revealing how many people have been affected by the shortage. “Everyone thinks about babies,” Perkins said. “But there’s a whole community from kids with special needs to teens and adults who need formula.”

The crisis, Chamberlin and other proponents say, has focused on broader issues of affordability and access for people with metabolic and digestive disorders. They are pushing for the passage of the Medical Nutrition Equity Act, which would broaden coverage of both public and private health insurance programs for specialized nutrition. Right now, proponents say, insurance companies can deny coverage for medical foods like Izzy’s low-protein pasta and limit reimbursement for formulas depending on state policy, which Chamberlin likens to denying insulin to diabetic patients.

“I know of families who have left relatives and jobs to move to a state with better coverage,” said Alison Reynolds, a resident of the district whose 19-year-old daughter has PKU.

Recognizing that many specialty products were manufactured only at Abbott’s Sturgis plant, the Food and Drug Administration called for a case-by-case release from the Food and Drug Administration a month ago, arguing that “the benefit of allowing health care providers, in consultation with their health care providers, access to these products may outweigh the potential risk of bacterial infection.” The Biden administration is working to obtain formulas from other countries, giving priority to special formulas for people with rare metabolic disorders.

Chamberlin said she and other parents have pinned their hopes on other brands increasing production. That process, in turn, has been complicated by pandemic supply chain shortages as companies seek truck drivers, cans and pouches to scale up.

Still, she sees some hope, noting that the pandemic and shortage have opened people’s eyes to how life can be changed by disease. “As frightening as this is, it brought awareness to this situation that many people live with,” said Chamberlin, who lives in Brooklyn.

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