Lack of infant formula threatens the lives of some older children and adults

Placeholder while loading article actions

Eight years ago, after routine twitching on her newborn daughter’s heel revealed a rare eating disorder, Sarah Chamberlain worried about the costs and insurance hassles that might lie ahead. But she never dreamed that the national supply of the metabolic formula, which helps keep her daughter alive, might run out.

That changed after Abbott Nutrition Remember formula The factory was closed. Now Chamberlain, whose daughter needs a low-protein diet, found herself counting cans, trying small amounts of potential alternatives and reassuring eight-year-old Izzie. “We’ll be able to have my milk, right?” He asks Izzy sometimes. And I say yes, Chamberlain said. “Because it’s kind of all I can say right now.”

A nationwide shortage of formula has focused on the plight of infants. But some children and older adults rely on specially formulated powders, mostly made by Abbott, to offset a variety of ailments, from distorted gut and allergies to problems processing nutrients like protein. While most healthy children can easily switch from one brand to another, a poorly chosen substitute can taste unbearable or lead to dehydration, seizures, and even death.

“It’s a cautionary tale to allow a company to monopolize the market when a group of clients is very sensitive,” said Tiffany Hayes, director of pediatric clinical nutrition education and practice at Johns Hopkins Hospital. The The shortage has begun In February after detection of bacterial contamination at the Abbott plant in Sturgis, Michigan, which the company closed. Four children were injured and two died.

The shutdown has stopped production of niche products like the ones Izzy relies on. Eazy, who has the rare genetic disorder phenylketonuria, or phenylketonuria, is an active tree climber when vaccinated with Abbott’s Phoenix. Without it, her mood quickly changes and she loses focus. If you are deprived of it for longer periods, you are likely to develop intellectual disabilities and other major health problems. The modified amino acid composition remains crucial in adulthood, especially for anyone considering pregnancy, when uncontrolled PKU can wreak havoc on a child’s development.

Abbott announced on April 29 that it would begin releasing limited amounts of the metabolic formulas that were on hold, including Phoenix. The company said last week you will release Another commonly used product, Elicare. The Sturgis plant is set to reopen on Saturday, with production of these and other specialty products prioritized, but it will take six to eight weeks before they reach the people they depend on. “Our number one priority is to provide children and families with the high-quality formulas they need,” said a spokesperson for Abbott.

How did the national shortage of infant formula affect you?

For 26-year-old Hannah Dollins, who was diagnosed shortly after her birth with maple syrup urine disease, or MSUD, a lack of the formula put long-term systemic problems in stark focus. Another rare genetic disease diagnosed through screening children, MSUD prevents the body from breaking down protein in foods such as meat and fish, which leads to a buildup of toxins in the blood and urine.

Dolins’ nutrition blends, including Abbott’s Ketonex, a modified amino acid formula, are administered under a physician’s care, making it difficult to stockpile supplies in preparation for emergencies. “I don’t know why we can’t have a little inventory in case something like this happens again,” she said. “Just to make sure we can survive.”

Dollins said she wasn’t too concerned when the Abbott plant closed. She had already received her month’s supply, not imagining that the lockdown would last so long. But gradually, as the factory shutdown continued, she began to get more and more afraid.

“I was terrified. If this wasn’t opened and I ran out of formula, I would die. I would literally die,” said Dollins, who said 85 percent of her daily nutrients come from formula milk. She was rationing the powder, supplementing it with a Nestlé cooler she could afford. In small amounts. It also plays through worst-case scenarios in the head.” I could be hospitalized for a while. Dollins said parenteral nutrition will support me for some time. “But in the end I need my formula.”

Four children with medical complications resulting from a formula deficiency were temporarily admitted to Le Bonheur, said Mark Corkins, a pediatric gastroenterologist at Le Bonheur Children’s Hospital in Memphis who chairs the Nutrition Committee of the American Academy of Pediatrics.

The Abbott plant closure isn’t the first time patients have worried about a shortage, according to clinical geneticists Chester Brown and Joel Morozkowski at the same hospital. Hurricanes and other natural disasters have disrupted the supply chain. Just as during natural disasters, providing supplies to patients was a “community effort,” Brown said, relying on providers and dieticians to coordinate with insurance companies to allow for alternatives in a time of crisis.

Most of the patients he and Morozzkowski see are children, often spared what were considered fatal illnesses by routine checkups of infants. Some PKU patients stop taking the formula once they pass a critical point in brain development. But those considering pregnancy need to eliminate high-protein foods from their diets, monitor their intake of fruits, vegetables and pasta, and return to drinking prescription formula. If not, the baby may have a developmental delay or have heart defects and other birth defects. “That’s what we worry about,” Brown said.

Parents face long drives and empty shelves for baby formula

The reasons why older children need formula range from genetics to structural problems such as 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 of medical conditions, including cerebral palsy and traumatic brain injury he sustained as an infant, mean he needs a special hypoallergenic formula, which is delivered four times a day to his stomach through a gastronomy tube because he can’t swallow.

Adonis, now almost 4 years old, was dependent on Abbott’s EleCare Junior. After it was no longer available, Perkins switched to Neocate Junior, made by Nutricia, not realizing that the surprisingly high demand for this product would quickly put him in a tailspin.

That was when things got more complicated, Perkins said her insurance only pays for formula that comes directly from the company. “I was frantically trying to find it online,” Perkins said, only to discover that the powder, which typically costs about $30 a pack, came in at about $80. Adonis now gets 40 ounces of formula milk a day, in four separate meals. A week’s show would suddenly cost over $300.

The Perkins family strategized together, switching to an unpopular flavor, the fruit flavor, from another Neocate product. “Nobody wants that,” Perkins said. “But because it goes through a tube, Adonis doesn’t taste it.” At one point, Perkins said, they relied on a day or two of formula. She felt her fears grow as she wondered how she would feed her baby and what might happen if she switched to a brand that Adonis couldn’t stand, which could send him to the hospital for intravenous nutritional support.

People who heard the story linked on social media, offering unused cans and even financial support. “We have three weeks,” Perkins said. We don’t know then. Nobody wants their child to starve to death.”

Perkins said this predicament resonated far beyond Collierville, revealing how many people were affected by the shortage. “Everyone thinks of children,” Perkins said. “But there is a whole community of children with special needs, teens and adults who need formula.”

Chamberlain and other advocates say the crisis has focused on broader issues of affordability and access for people with metabolic and digestive disorders. They are pushing to pass the Medicinal Nutrition Equality Act, which would expand coverage under public and private health insurance programs for specialty nutrition. For now, advocates say, insurance companies can refuse to cover medical foods like Izzy’s low-protein pasta and limit reimbursement for milk depending on state policy, which Chamberlain likens to denying insulin for diabetics.

“I’ve known families who left relatives and jobs to go to a state with better coverage,” said Alison Reynolds, a local who has a 19-year-old daughter with phenylketonuria.

Recognizing that many specialty products were manufactured only at Abbott’s Sturgis plant, the Food and Drug Administration a month ago called for a combination of . is released on a case-by-case basis, arguing that “the benefit of allowing providers, in consultation with healthcare providers, to have access to these products may outweigh the potential risks of bacterial infection.” The Biden administration is working to secure a formula from other countries, prioritizing Specialization formula For people with rare metabolic disorders.

Chamberlain said she and other parents have pinned their hopes on other brands increasing production. This process, in turn, has been complicated by the supply chain shortages associated with the pandemic, as companies seek truckers, packers and suitcases to scale.

However, she does see some hope, noting that the pandemic and shortages have opened people’s eyes to how life is changing because of the disease. “Although scary, it led to this situation that a lot of people live with,” said Chamberlain, who lives in Brooklyn.