June 25, 2022

Scrambling for Solutions

Families with metabolic disorders feel unheard as formula shortage continues

In 2005, there were five babies born with Phenylketonuria (PKU). One of these five was the daughter of Creston’s Mary Watkin. This metabolic disorder cause a buildup of the amino acid phenylalanine due to the liver’s inability to create the enzyme that breaks it down.

This very rare disorder, if left untreated, leads to severe, irreversible brain damage. One of the primary sources of treatment is a metabolic formula that contains the body’s necessary nutrients. Watkin’s daughter has been drinking this for the past 16 years as she is unable to consume any high-protein foods.

“It poisons them.” Watkin said. “She can eat some normal food, but she drinks formula every day.”

In February, the family received life-changing news. Watkin received a call from the University of Iowa clinics saying they couldn’t get her formula because it had been recalled. “They told us to try a different formula, but that’s easier said than done,” she said.

That’s when Watkin took matters into her own hands. “I decided to look into it,” she said. The metabolic formula they use comes from Abbott Nutrition in Sturgis, Michigan. The company had a hotline specifically for customers with metabolic disorders. “I called them nonstop. I spent hours calling and leaving voicemails.”

In February, the FDA issued a warning to parents using certain powdered baby formula products manufactured in the Abbott Nutrition facility when four infants were hospitalized after consumption of formula from the plant. This lead Abbott to recall all products that could potentially be impacted - including the metabolic formulas Watkin’s daughter uses.

“Here it is, sitting in warehouses, and they can’t give it to you,” she said. This formula isn’t for sale at your local grocery store. It’s a specially ordered product that requires a prescription from a doctor. Watkin started looking everywhere - contacting every provider on the internet. “I thought if they can’t help me, I’ll help myself.”

She found a company that was selling the formula - for triple the price. “I bought it,” she said. “If she didn’t have formula, she would develop brain damage.” The purchase - a month’s supply - cost the family thousands of dollars, but because she purchased from a non-supplier, she was forced to pay out of pocket. “I couldn’t get anything covered or put toward my deductible.”

The state of Iowa does not mandate insurance companies to cover the cost of medical foods or formulas. Every year, they pay out of pocket for their daughter’s main source of nutrition until their deductible is met and the expense is finally covered.

Watkin is a passionate advocate for the PKU community as well as other metabolic disorders. She has gone herself to Washington D.C. to lobby for the Medical Nutrition Equity Act - a bill that would mandate all insurance companies to cover medical foods and formula. That trip occurred several years ago. “It just shows how long it’s taking,” she said.

The month of May is PKU awareness month, and it couldn’t come at a more necessary time. “We don’t have a voice,” she said. “Because we are so rare, we don’t get the funding we need.” The family still doesn’t have a good stock of formula, but Watkin is thankful for the support she has received from Abbott Nutrition throughout the process.

Just this week, the FDA announced they would allow Abbott Nutrition to release some of this old stock on a “case-by-case” basis. It’s only being released two cases at a time - about a two week’s supply for Watkin’s daughter.

“How can we protect them from this happening?” Watkins wonders. She compares it to if they suddenly shut down facilities making insulin. What would they do?

Since finding out that her daughter was born with PKU, this has been the most concerning time for her as a mother. “We want our children to grow up healthy and normal,” she said. “It’s a necessity.”

Cheyenne Roche


Originally from Wisconsin, Cheyenne has a journalism and political science degree from UW-Eau Claire and a passion for reading and learning. She lives in Creston with her husband and their two little dogs.