PLYMOUTH, Minn. — It’s snack time at the Vachuska household, but every morsel little Rowan consumes must be weighed, tracked and calculated because her body can’t break down proteins normally.
It’s a rare genetic condition called Phenylketonuria, or PKU. Doctors found it during a routine blood test when she was just one week old. There’s no cure, but it can be managed with weekly blood tests and a strict diet.
“We’re so thankful for the early detection,” Melissa Vachuska said. “It means a low protein diet for life. And most of that comes from medical foods and formula, or specially designed meals or recipes for low protein.”
But the food she relies on to thrive come with a hefty price tag.
“This is $14.99 for this loaf of bread. This will last us…Not long,” Melissa Vachuska said.
Her specialized medical formula rings in at $75.
“Not all of those foods are readily available in grocery stores,” said Sara Elsbecker, a pediatric nurse practitioner.
It’s one of several roadblocks Elsbecker and the rest of Rowan’s medical team at M Health Fairview Children’s help the family navigate.
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“That often time can be out-of-pocket costs or it may be covered by insurance,” Elsbecker said.
Elsbecker says much like individualized care, coverage varies from patient to patient.
“I think one of the things that’s challenging is that there’s so much variability from patient to patient,” Elsbecker said.
But from a medical standpoint, it’s necessary nutrition.
“Even foods that might contain 2-3 grams of protein could possibly be too much for them,” Elsbecker said. “That can cause problems with toxicity in the brain and can lead to cognitive impairments and developmental problems.”
Right now, insurance companies aren’t required to cover medical foods or formula, but a bill on Capitol Hill could change that.
“Medical food and formula should be covered. It is no different than other medicals that are covered. It should be covered in its entirety,” Melissa Vachuska said.
It’s a mission this family won’t stop pushing for.
“It’s not just Rowan. It’s an entire rare disease community that we are fighting for,” Melissa Vachuska said.
The Medical Nutrition Equity Act would ensure that both public and private insurance cover medically necessary foods as a treatment option. It’s in the process of being introduced in the Senate.