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With an off-label drug discontinued, families' other option costs thousands more

MARY LOUISE KELLY, HOST:

An update now on the story of an 8-year-old who needed a drug that came in two nearly identical versions. The pediatric drug was eight times more expensive than the one for adults. Well, now the cheaper option, which some doctors were prescribing to save families money, it is no longer available. We first heard about this through Kaiser Health News and NPR's Bill of the Month series. Here's NPR pharmaceuticals correspondent Sydney Lupkin with more.

SYDNEY LUPKIN, BYLINE: The Taksali family thought their battle to avoid a steep drug bill was over. In early 2020, their 8-year-old daughter needed a hormone blocker. We're not naming her, but she'd been diagnosed with a rare condition called central precocious puberty. It would cause her to go through puberty years earlier than her peers. I talked with her dad, Sudeep Taksali, at his Oregon home last year.

SUDEEP TAKSALI: We just didn't feel like she was equipped to deal with a lot of the changes that come with a girl going through puberty. And so that's where we had to make some decisions as to what the right treatment was.

LUPKIN: He learned that there were two nearly identical drugs, both of which were implanted in the upper arm. Both were made by a company called Endo Pharmaceuticals. And both contained 50 milligrams of the same hormone blocker. But only one version, called Supprelin, was FDA approved to treat the little girl's condition. Today it has a list price of $43,000. The cheaper one was called Vantas and cost about $4,800.

Even though Vantas was only approved to treat prostate cancer, doctors could prescribe it off label, meaning the drug could be used for other conditions. Although his insurance company initially refused to cover Vantas, Taksali, who happens to be an orthopedic surgeon, got the decision reversed. And Taksali thought that was the happy ending. Then this summer, it was time to replace the drug implant.

TAKSALI: In my mind, I was like, well, she got it the first time, and we've already kind of fought the battle with the insurance company and, you know, got it approved. I would think that it would be more seamless the second time around.

LUPKIN: But the doctor told him that his daughter couldn't get the Vantas implant this time. No one could. There was a Vantas shortage. Endo Pharmaceuticals told NPR it was a manufacturing issue. And even though both drugs are made in the same factory, there was no problem making the expensive drug. In fact, the company's CEO told investors that there had been a sizable increase in revenue for the more expensive drug. Endo told NPR this was mostly due to things getting back to normal this past spring as the pandemic eased in the U.S. Taksali is skeptical.

TAKSALI: On the surface, it's all very, like, curious. Like, you know, when this particular option went away and your profits went up nearly 80% from the more expensive drug.

LUPKIN: Then in September, Endo discontinued Vantas for good. It says it was never able to fix the Vantas manufacturing problem and decided to stop making it. Erin Fox is a nationally recognized expert on drug shortages. She says the discontinuation sounds like business as usual for the drug industry.

ERIN FOX: The FDA has very little leverage because there's no requirement for any company to make any drug, no matter how lifesaving.

LUPKIN: It's a business decision. It's hard to know exactly how many children will be affected. Dr. Erika Eugster is a professor of pediatrics at the Indiana University School of Medicine.

ERIKA EUGSTER: I immediately thought about our transgender population. They're the ones that are really going to suffer from this.

LUPKIN: As for Taksali, he can't help but wonder whether Endo Pharmaceuticals was seeing more off-label Vantas prescriptions after his Bill of the Month segment on NPR last year.

TAKSALI: Now, when it came my turn to have my daughter get treated again, the cheaper drug option was pulled off the market. And it almost feels like that was my fault, you know?

LUPKIN: This time around, his daughter had no choice except the expensive drug.

Sydney Lupkin, NPR News.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.