What if clinical trial volunteers made drug pricing demands?

Kaylene Sheran has Gorlin syndrome, a disease that leads to scores of skin tumors requiring frequent surgeries. Because the disease is rare, patients like Sheran are enthusiastically recruited by companies trying to develop treatments for Gorlin. But Sheran, presented with the opportunity to join a clinical trial that might improve her condition, wasn’t interested.

In the second part of "The Medicine Hunters," STAT’s Eric Boodman explains Sheran’s position: Unless a drug company can guarantee that its medicine will be affordable once it’s approved, she’s not interested in donating her time or her body.

Sheran’s experience is one facet in the fascinating story of the molecule that might treat Gorlin, a saga that involves a Utah forest, a biotech bubble, and decades of winding research.

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