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Its extremely high price tag means that a lifesaving medication to treat young children with spinal muscular atrophy is simply too expensive for most families.
A single dose of Zolgensma costs $2.1 million, the highest per-dose price ever, NBC News reported.
That puts the drug -- approved by the U.S. Food and Drug Administration in May -- out of reach for many parents of infants with spinal muscular atrophy, a rare and fatal progressive disease.
Sarah Stanger's son Duke has the illness.
"I was pretty shocked" by the price, Stanger told NBC News. "You know, as a teacher we definitely don't have $2.1 million, and I don't know anybody who does."
Her family's insurance company refused to pay for the drug, which doctors said was the best option for Duke.
"With no treatment, most children will pass away by age 2," Stanger, of Monroe, Ohio, told NBC News.
When Zolgensma was approved, maker Novartis said it expected insurance companies would cover the cost of the treatment.
The company told NBC News that a "wide range of patients" have had the drug covered by insurance, and added that it's not uncommon for patients to have to go through an appeals process for any new drug.
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