Formula shortages affecting individuals with allergies, autoimmune disorders

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The sudden formula shortage has affected parents of infants across the nation, but for individuals and families with certain medical needs, the shortage of specialty formulas like Elecare has made an already difficult issue even harder. (Graphic made by Abigail Jane Gunderson using Canva)

The baby formula shortage crisis in the U.S. is affecting people with allergies and autoimmune disorders, creating new challenges for these individuals.

In February, formula manufacturer Abbott Nutrition voluntarily recalled Similac, Alimentum, Elecare and other formulas after complaints from four customers of bacterial infections and salmonella caused by the formula.

The sudden formula shortage has affected parents of infants across the nation, but for individuals and families with certain medical needs, the shortage of specialty formulas like Elecare has made an already difficult issue even harder.

Pyper Lucero from Herriman, Utah, has struggled with formula shortages but not because of a baby. Lucero’s 12-year-old son, Ryker, has eosinophilic esophagitis, an autoimmune disease that causes certain white blood cells to accumulate in the esophagus and attack proteins, causing inflammation and tissue damage.

Since his body can’t process protein strands, Ryker relies on Elecare, a specialty amino-based formula which provides him with the nutrients and calories he needs. Lucero said he goes through one $60 can per day. Along with other formula shortages, a huge factory recall has left them and other families in their situation without access to their child’s primary source of nutrition.

The Abbott recall hasn’t affected all formulas, but it did take a several types off the shelves. Government agencies like the Department of Health & Human Services and Women, Infants and Children are helping people find baby formula. Specialty formulas like Similac, Elecare and Alimentum are considered medical formulas and require a prescription, making them more difficult to find with shortages.

Ryker can eat rice and sweet potatoes without a reaction, but neither food provides all the nutrients and energy he needs to function daily. Elecare fills in the gaps in his diet.

“Thank goodness with the formula he gets all the calories that he needs,” Lucero said.

Because of the recall, Lucero said they have been supplementing with similar hypoallergenic formulas to Alfamino and Neocate, but she doesn’t expect that supply to last. On their website, Neocate said demand for their formula has nearly tripled since the Abbott recall.

Supplements from new formulas aren’t the best option either, Lucero said. After a recent doctor’s visit, she said she is concerned Ryker has been reacting poorly to a new formula.

“There’s damage to his esophagus and that potentially could be caused from the formula,” she explained.

Lucero said the uncertainty from the shortages has created a stressful situation for her as a mom.

“They’re going to starve to death or they’re going to be in the hospital because we can’t feed them,” she said.

Lucero said she understands the baby formula shortage is also stressful for mothers, but is frustrated at the lack of conversation and media coverage around the shortages for specialty medical formulas.

“For children like mine it’s essential to life; I mean we’re talking about starving children and no way to feed them,” she said referring to the fact that there aren’t as many options for supplementing as there are for babies.

“I think we’re not really being informed of what’s happening in general,” she said. “The only way I found out about the formula stuff was because of our home health representative.”

Alicia Wilson from Clearfield, Utah, said she agrees the medical formula shortages haven’t been getting as much coverage, since the problem doesn’t affect as many people.

 “I’m not sure that a lot of people are even are aware of it if they’re not having to deal with it,” she said.

Wilson is an adult with eosinophilic esophagitis, eosinophilic gastroenteritis and mast cell disease. White blood cells in her esophagus and small intestine attack proteins and cause inflammation and tissue damage. For her, Neocate formula was the solution to months of doctor’s visits and trying to eliminate different foods.

“I knew probably about three-and-a-half, four weeks into it, that formula was the answer because it was the first treatment that finally took the pain away and the nausea,” Wilson said.

Similar to Ryker, she can’t switch formulas without repercussions.

“I already had been through a lot of formulas before coming to Neocate,” she said. “It was the first one that didn’t cause abdominal pain and consequences of using it.”

When the shortages first started Wilson said she called to order her formula and was told they only had one kind available, but it wasn’t her typical prescription.

“I can’t have the formula with the pre- and the probiotics in it and they said, ‘Well, that’s all we have,'” she said. “It was a miserable couple of weeks until they got the unflavored in.”

Abby Haines from Orem said she has been able to find hypoallergenic formula for her 7-month-old daughter through Women, Infants and Children in Orem. When the shortages first started, she said she didn’t expect her hypoallergenic formula to be affected as much, but soon found there was a much higher demand for allergy-friendly formula than she expected.

“At first I was like, ‘Oh, not a lot of people use that so I’ll be okay with a shortage,'” she said. “But it turns out that those specialty formulas are the most impacted.”

Jillian Porto, the director of Provo’s Women, Infants and Children program said new legislation has made it easier for parents with Women, Infants and Children benefits to adjust their plan so they can get whatever formula is available. She said specialty prescription formulas are covered by Women, Infants and Children benefits in most cases.

“Typically we can provide a variety of formulas,” she said. If a certain formula is not available, “at this time we are directing (customers) to talk to their doctor to see what is a good alternative.”

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