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Shortage of formula impacting people with metabolic disorders

DULUTH, MN. (KBJR 6) — The national formula shortage is affecting more than babies.

Across the country, people with certain genetic conditions need their own formulas.

For a future UMD pharmacy student, Alexa Breske, a formula supplement in her diet, is an integral part of life.

“My formula is definitely something that makes it kind of like a function versus not working in a day,” Breske said.

She was born with a genetic condition called phenylketonuria, or PKU, diagnosed shortly after birth.

The PKU prevents her body from properly metabolizing proteins.

“Most people know, like those little school milk cartons their kids get at the lunch line, usually have about 8 grams of protein,” Breske said. “My daily limit is less than this amount.”

An amino acid called ‘phenylalanine’ builds up in her body if she doesn’t follow a very strict diet.

So, Breske has been using a specially prescribed formula supplement since she was young.

At first, she didn’t think the shortage would make a big difference in her life.

“When I was told in March that there would potentially be a formula shortage, I was like okay, maybe it will be a few weeks or a month, I have enough to get through until there, everything will be fine,” Breske said.

But as the weeks turned into months, Breske began to worry.

“When they kept pushing the deadline and finally there was no date, that’s when it was like oh my god, it’s life or death for me, it needs to be understood, and I don’t know what to do at this point,” Breske said.

A box of the prescribed formula usually only lasts between two and four days. Breske and others with genetic disorders must get their formula directly from suppliers like Abbott, they can’t just find it at a grocery store.

“Our PKU patients and our other patients are very concerned about this because they know formula is their lifeline,” said Dr. Barbara Burton, a clinical geneticist at Northwestern University in Chicago.

Burton has worked with PKU and other genetic disorders for more than two decades.

“PKU affects approximately 1 in 15,000 babies born,” Burton said. “So it’s a rare disease, but nonetheless, for patients who have it, it’s extremely important that we have newborn screening, and luckily we have it.”

The difficulties that PKU has presented in Breske’s life and learning to manage his health truly inspires him.

“That’s kind of what influenced my career to go to pharmacy school, so it’s definitely something that inspired me on my career path,” Breske said.

She said the best thing people can do to help is provide support.

“There are thousands of other people with genetic disorders who are in the same situation as me, and if you’re not in the rare disease community, you probably don’t know much about it,” said said Breske.

In the meantime, she has mixed other formulas into her diet, but not having the specially prescribed formula can leave her feeling exhausted and lethargic.

If PKU is not properly treated, it can lead to brain damage and seizures.

But, hope is on the horizon.

Production recently restarted at the Abbott Nutrition factory in Michigan on Sunday.

The factory closed in February and reopened in June, but only two weeks later had to close again due to flooding caused by severe storms.

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