The World’s Most Expensive Medicine Is a Bust

The most expensive drug in history is a money loser that’s not reaching patients. In fact, it’s only been paid for and used commercially once since being approved in 2012.

The medication in question is alipogene tiparvovec, better known as Glybera, a medicine widely heralded as the “first gene therapy” in the Western world and whose approval helped ignite an explosion of investment and excitement around treatments that correct DNA. 

But when the Berlin physician Elisabeth Steinhagen-Thiessen wanted to give a patient Glybera last fall, it wasn't so easy. She says she had to prepare a submission as thick as “a thesis” for German regulators and then personally call the CEO of DAK, one of Germany’s large sickness funds, or insurers, to ask him to pay the $1 million price tag.

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