Discovered in the valley of the one-eyed lambs, a toxic weed fuels a cancer-drug gold rush — and a quandary
PHILADELPHIA — The search began immediately after breakfast. It was Sunday, the last morning of a conference for patients with Gorlin syndrome, and as Kaylene Sheran finished up her bacon and eggs, Sara Ann Conkling turned the conversation to an experimental drug called patidegib. In this crowd, the medicine was something of a celebrity. Everyone was talking about it: a gel that could potentially shrink existing skin tumors and prevent the growth of new ones without causing the side effects of taking this kind of chemo in pill form. For Gorlin patients — who, in the most extreme cases, needed basal cell carcinomas surgically removed once every few weeks — that sounded too good to pass up.
So, Conkling asked between bites, what did Sheran think? Would she volunteer as a test subject?
The response came as a surprise. Sheran was already so firm, so unmovable in her decision. “I was like, ‘No, and here’s why,’” Sheran recalled: Representatives for the drug company PellePharm had been pleading with patients like her to come forward, but to her, it didn’t seem right to lend them her time and body if they couldn’t say how affordable their medication might eventually be. Yesterday, she’d asked, and they’d given her no details, no guarantees. If they had no answer to her most pressing question, then they could look elsewhere for the 150 recruits they needed; Sheran wasn’t interested.
“I was encouraging her to ask that question,” Conkling said. But she didn’t want her friend to give up prematurely on getting the stuff, either. “I’m concerned about her,” Conkling said. “I’m more concerned about her than about me. I’m older. I’ve lived a lot of life already. It’s more important for her to have treatment.”
They’d met a few years earlier, through a Gorlin support group online. That was how Sheran came to know most of her closest friends. She was bullied in school, and though she liked the other teens with whom she did community radio — on air, she was DJ Diamond — rare illnesses can come with a unique sort of loneliness, a void that can only be filled by people
