When an off-label drug is stopped, the other option costs families thousands more: NPR

When an off-label drug is stopped, the other option costs families thousands more: NPR

Children who need a hormone-blocking drug to prevent premature puberty have lost an off-label option. The company that makes the drug, which is 1/8 the cost of the FDA-cleared version, has withdrawn it.


An update on the story of an 8 year old who needed a drug that came in two almost identical versions. The pediatric drug was eight times more expensive than the adult one. Well, now the cheaper option some doctors have prescribed to save families money is no longer available. We first heard about it through Kaiser Health News and MediaFrolic’s Bill of the Month series. Here is MediaFrolic pharmacy correspondent Sydney Lupkin with more.

SYDNEY LUPKIN, BYLINE: The Taksali family thought their struggle to avoid a high drug bill was over. In early 2020, her 8-year-old daughter needed a hormone blocker. We don’t call her by name, but she has been diagnosed with a rare condition called central premature puberty. It would result in her going through puberty years earlier than her peers. I spoke to her father, Sudeep Taksali, at his home in Oregon last year.

SUDEEP TAKSALI: We just didn’t feel that she was ready for many of the changes that come with a girl going through puberty. And so we had to make some decisions about what the right treatment was.

LUPKIN: He learned that there are two almost identical drugs that were both 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 has been approved by the FDA for treating the little girl’s condition. Today it has a list price of $ 43,000. The cheaper one was called Vantas and cost around $ 4,800.

Although Vantas was only approved for the treatment of 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, the decision was reversed by Taksali, who happens to be an orthopedic surgeon. And Taksali thought that was the happy ending. That summer it was time to replace the drug implant.

TAKSALI: In my mind I thought, well, she got it the first time, and we already fought the insurance company and got it approved. I would think 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. Nobody could. There was a lack of Vantas. Endo Pharmaceuticals told MediaFrolic it was a manufacturing issue. And although both drugs are made in the same factory, making the expensive drug wasn’t a problem. In fact, the company’s CEO told investors that revenues for the more expensive drug had increased significantly. Endo told MediaFrolic that this was mainly due to the fact that things got back to normal last spring as the U.S. pandemic subsided. Taksali is skeptical.

TAKSALI: On the surface everything is very strange. You know, when that particular option was dropped and your profits increased by almost 80% from the more expensive drug.

LUPKIN: Endo Vantas finally stopped in September. They say it was never able to fix Vantas’ production problem and decided to stop manufacturing. Erin Fox is a nationally recognized expert on drug scarcity. She says the setting sounds like business as usual for the pharmaceutical industry.

ERIN FOX: The FDA has very little leverage because no company is required to make a drug, no matter how life-saving it is.

LUPKIN: It’s a business decision. How many children will be affected is difficult to say. Dr. Erika Eugster is Professor of Pediatrics at Indiana University School of Medicine.

ERIKA EUGSTER: I immediately thought of our transgender population. It is you who will really suffer.

LUPKIN: As for Taksali, he can’t help but wonder if Endo Pharmaceuticals saw more off-label Vantas prescriptions last year after his Bill of the Month segment on MediaFrolic.

TAKSALI: When it was my turn to have my daughter treated again, the cheaper drug option was withdrawn from the market. And it almost feels like it’s my fault, you know

LUPKIN: This time his daughter had no choice but the expensive drug.

Sydney Lupkin, MediaFrolic News.


Copyright © 2021 MediaFrolic. All rights reserved. For more information, see the Terms of Use and Permissions pages on our website at www.npr.org.

MediaFrolic transcripts are created by Verb8tm, Inc., an MediaFrolic contractor, on a deadline basis and created using a proprietary transcription process developed with MediaFrolic. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of MediaFrolic programming is the audio recording.

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Rachel Meadows

Rachel Meadows

Trending topics news writer who enjoys cooking, walking her dog and travel.

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