You are using an older browser version. Please use a supported version for the best MSN experience.

The baby-formula shortage is worse for families of kids with metabolic issues. Without the special formula, these children could suffer brain damage.

INSIDER logo INSIDER 20/05/2022 insider@insider.com (Heather Marcoux)
Courtesy of Sarah Chamberlin © Provided by INSIDER Courtesy of Sarah Chamberlin
  • Sarah Chamberlin's 8-year-old needs a medical formula to prevent brain damage.
  • Alexa Beichler's two young sons also require a specialized formula.
  • All three children have a rare disorder called phenylketonuria, or PKU.

The baby-formula shortage is putting pressure on parents and infants at risk, but the Abbott Nutrition recall also affects older kids who need formula because of disabilities and health conditions

Sarah Chamberlin's 8-year-old daughter, Izzy Bradford, needs a metabolic formula, such as Abbott's Phenex-2, to live. It makes up 70% of her nutrition, Chamberlin said. Izzy goes through one can of formula every three days, Montclair Local previously reported

Without the medical formula, Izzy could suffer brain damage. Izzy has phenylketonuria, or PKU, a metabolic disorder where a buildup of amino acids can form in the brain.

Parents wonder why the shortage isn't being taken seriously

For kids such as Izzy, the formula is key to their nutrition and growth.

"She gets about 5 grams of protein from food per day, and then the medical formula makes up the rest of her protein minus the one amino acid that would cause toxicity in her brain," Chamberlin said. 

PKU affects about 17,000 people in the United States. All of those people — and children with other conditions — need the formula for life.  

"Izzy's 8, but there are people who are 30, 40, or 50 on this formula," Chamberlin said. 

She's concerned that the needs of these people are being ignored because those who use specialized medical formulas don't make up a large consumer base, so their needs aren't seen as profitable. 

"If insulin were contaminated, it wouldn't have taken this long to figure out the supply line, but there are only 20,000 people affected in the US, and we have this months-long problem," Chamberlin said. 

Alexa Beichler relates to Chamberlin. The two moms know each other because two of Beichler's three sons also have PKU. Like Izzy, they need the formula to live. 

Beichler is struggling to find enough formula for 20-month-old Taylor and 5-month-old Jax. They're both on different formulas for their age and medical needs. If Beichler fed them something different, they could be in medical and psychological distress within days, she said, because of a buildup of animo acids that their bodies can't handle. 

"I'm not okay," Beichler wrote on Facebook. "Taylor and Jax's formula is not found at stores and cannot be bought online," she added in another Facebook post.  

The formulas the Beichler family needs don't come from Abbott, but the family has still been affected by the recall that was issued in February after four babies were hospitalized for a rare bacterial infection after drinking formula made in Abbott's plant in Sturgis, Michigan. 

Some want insurance to cover medical formulas

Because Abbott is one of just a few companies that make formula for the United States, the recall affected the entire formula supply, which made every kind of formula in the nation scarcer. 

The baby-formula crisis highlights how society is failing not only parents but also disabled Americans, some of whom need expensive medical formulas to live and were already struggling to access them before the shortage. 

"This crisis won't end for us when supply resumes because thousands don't have access to formula because of poor insurance coverage," Chamberlin said. 

Like many PKU parents, she's urging Congress to pass the Medical Nutrition Equity Act, which would require health-insurance companies to cover medical formulas for people like Izzy.

Right now, some states cover it until kids are 5. Others cover it until a child is 18. Chamberlin wants people to understand that folks with PKU and other disorders need this formula for their entire lives, and if they can't get it, their health will decline. 

Read the original article on Insider
AdChoices
AdChoices
image beaconimage beaconimage beacon