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Formula shortage impacting people with metabolic disorders


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

People all over the nation with certain genetic disorders need their own formulas.

For soon-to-be pharmacy student at UMD, Alexa Breske, a formula supplement in her diet, is a necessary part of life.

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

She was born with a genetic disorder called Phenylketonuria, or PKU, diagnosed shortly after birth.

PKU causes her body to not properly metabolize proteins.

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

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

So, Breske has used 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 back in March that there was going to be a formula shortage potentially, I was like okay maybe it’ll be a couple of weeks or a month, I’ve got enough to get me through until then, everything will be fine,” Breske said.

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

“When they kept pushing the deadline back and there was eventually no expected date, that’s when it was like oh my goodness this is life or death for me, this needs to get figured out, and I don’t know what to do at this point,” Breske said.

One can of the prescribed formula usually only lasts between two and four days. Breske and other people with genetic disorders have to get their formula directly from suppliers like Abbott, they can’t just find it in a grocery store.

“Both our PKU patients and our other patients are very concerned about this because they know the 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 about 1 in every 15,000 babies born,” Burton said. “So it’s a rare disorder, but nonetheless, for the patients who have the condition, it’s critically important that we have newborn screening, and thankfully, we do have it.”

The difficulties PKU has presented in Breske’s life and learning how to manage her health are actually inspiring her.

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

She said the best thing people can do to help, provides support.

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

She has been mixing-in other formulas into her diet in the meantime, but not having the specially prescribed one can leave her feeling drained and lethargic.

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

But, hope is on the horizon.

Production recently started back up at Abbott Nutrition’s factory in Michigan Sunday.

The factory shut down in February and opened back up in June, but just two weeks later had to shut down again due to flooding from severe storms.

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