P.K.U. | St. Louis Public Radio

P.K.U.

Amanda Moller prepares her formula in her home in University City. The formula is vital to treat a rare condition, but her insurer doesn't cover it.
Sarah Fentem | St. Louis Public Radio

Every day, Amanda Moller scoops powdered formula out of a can and shakes it up with water from her kitchen sink. It's like mixing a cocktail, she said, "but not that much fun."

The formula doesn’t taste great – like watery pudding with a biting, cheesy aftertaste. But it’s something Amanda needs to treat a rare metabolic condition she’s had since she was born. After 30 years, she’s gotten used to it.

Amanda’s employer-based insurance plan (through her husband’s employer) doesn’t cover it. Like many treatments for rare diseases, the lack of well-funded research and the tendency of insurers to focus on the bottom line mean sometimes patients can’t afford necessary medical supplies. Many of the 16,000 people in the United States who need the formula spend close to $1,000 a month to buy it.