The nationwide formula shortage has focused on the plight of infants. But some older children and adults depend on specially formulated powders, much of it made by Abbott, to compensate for a variety of ailments, from malformed bowls and allergies to problems processing nutrients like protein. While most healthy babies can switch easily from brand to brand, for these people, a poorly chosen substitute can either taste intolerable or prompt dehydration, seizures and even death.
“It’s a cautionary tale of allowing a company to monopolize the marketplace when it’s a very sensitive population of clients,” said Tiffani Hays, the director of pediatric clinical nutrition education and practice at Johns Hopkins Hospital. The shortage began in February after revelations of bacterial contamination at the Abbott plant in Sturgis, Mich., which the company closed. Four children were sickened, and two died.
The shutdown stopped production of specialized products like the one that Izzy relies on. Izzy, who has the rare inherited disorder phenylketonuria, or PKU, is an energetic tree climber when fortified with Abbott’s Phenex. Without it, her mood quickly changes, and she loses focus. If she were deprived of it for longer periods, she would likely develop intellectual disabilities and other major health problems. Amino acid-modified formula remains crucial into adulthood, particularly for anyone considering becoming pregnant, when uncontrolled PKU can wreak havoc with a baby’s development.
Abbott announced on April 29 that it would begin releasing limited quantities of the metabolic formulas that had been on hold, including Phenex. Last week, the company said it would release another commonly used product, EleCare. The Sturgis plant is scheduled to reopen Saturday, prioritizing the production of these and other specialty products, but it will take six to eight weeks before they get to the people who depend on them. “Our number one priority is getting infants and families the high-quality formulas they need,” an Abbott spokesperson said.
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For Hannah Dolins, 26, who was diagnosed shortly after birth with maple syrup urine disease, or MSUD, the formula shortage has brought long-term systemic problems into stark focus. Another rare, inherited disease diagnosed through infant screening, MSUD prevents the body from breaking down protein in foods such as meat and fish, resulting in a build up of toxins in blood and urine.
The mix of nutrition Dolins takes, including Abbott’s Ketonex, an amino acid-modified formula, is administered under the care of a physician, making it hard to stock up on supplies in preparation for emergencies. “I don’t know why we can’t have a little stockpile just in case something like this ever happened again,” she said. “Just to make sure we can survive.”
Dolins said she wasn’t too worried when the Abbott factory closed. She had already received her month’s supply, and she didn’t imagine the shutdown would last long. But gradually, as the plant remained shuttered, she began getting more and more scared.
“I was terrified. If this doesn’t open up 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 been rationing the powder, supplementing it with a cooler made by Nestlé that she can tolerate in small quantities. She also plays through worst-case scenarios in head. “I can be hospitalized for a little while. IV nutrition will sustain me for a little while,” Dolins said. “But ultimately I need my formula.”
Mark Corkins, a pediatric gastroenterologist at Le Bonheur Children’s Hospital in Memphis who chairs the American Academy of Pediatrics nutrition committee, said that four children suffering from medical complications resulting from the formula shortage have been temporarily admitted to Le Bonheur.
The Abbott plant closing is not 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 interrupted the supply chain. And just as during natural disasters, keeping patients supplied has been a “community effort,” Brown said, relying on providers and dietitians to coordinate with insurance companies to allow for substitutions in a time of crisis.
Most of the patients he and Mroczkowski see are children, often spared from what used to be fatal diseases by routine infant screenings. Some patients with PKU stop taking formula once they have passed the critical point of brain development. But those who are thinking about becoming pregnant need to eliminate high-protein food from their diets, monitor their intake of fruits, vegetables and pasta, and revert to drinking a medical formula. If not, the baby may suffer developmental delays or have heart and other birth defects. “That is what we worry about,” Brown said.
Parents face long drives and empty shelves for baby formula
The reasons older children need formula ranges beyond genetic diseases to structural problems such as short bowel syndrome. Cecilia Perkins, of Collierville, Tenn., fostered 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 sustained as an infant, means he needs special hypoallergenic formula, which is delivered four times a day to his stomach through a gastronomy tube because he cannot swallow.
Adonis, now almost 4, was relying on Abbott’s EleCare Junior. After that was no longer available, Perkins switched to Neocate Junior, made by Nutricia, not realizing that the sudden high demand for that product would quickly put it on backorder.
That was when things got trickier still, as Perkins said her insurance pays only 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 usually costs about $30 a can, had shot up to about $80. Adonis now gets 40 ounces of formula a day, in four separate feedings. A week’s supply would suddenly cost more than $300.
The Perkins family cobbled a strategy together, switching 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 were down to a day or two of formula. She felt her fears rise as she wondered how she was going to feed her child and what might happen if she switched to a brand Adonis could not tolerate, potentially sending him into hospital for IV nutritional support.
People who heard the story connected on social media, offering unused cans and even financial support. “We have three weeks worth,” Perkins said. “We don’t know after that. Nobody wants their child to starve.”
The predicament has resonated far beyond Collierville, Perkins said, revealing how many people have been affected by the shortage. “Everyone is thinking babies,” Perkins said. “But there is a whole community of special needs kids to teens and adults that require formula.”
The crisis, Chamberlin and other advocates say, has put a focus on broader issues of affordability and access for people with metabolic and digestive disorders. They are pushing to pass the Medical Nutrition Equity Act, which would broaden coverage under both public and private health insurance programs for specialized nutrition. Right now, advocates say, insurance companies can deny coverage for medical foods like Izzy’s low-protein pasta and limit reimbursement for formula depending on state policy, which Chamberlin likens to denying a diabetic their insulin.
“I have known families who have left relatives and jobs to go to a state with better coverage,” said Alison Reynolds, a District resident whose 19-year-old daughter has PKU.
Recognizing that many specialized products were manufactured only at Abbott’s Sturgis plant, the Food and Drug Administration a month ago called for formula to be released on a case-by-case basis, arguing that “the benefit of allowing caregivers, in consultation with their health care providers, to access these products may outweigh the potential risk of bacterial infection.” The Biden administration is working to secure formula from other countries, prioritizing specialty formula 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-related 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 opened people’s eyes to how life can be changed by illness. “As frightening as this is, it brought this situation that a lot of people are living with to consciousness,” said Chamberlin, who lives in Brooklyn.