DIY Clinical Trials

By AnthonyLast updated: Monday, February 6, 2012 • Save & ShareLeave a Comment

I’ve recently finished Jon Ronson’s The Psychopath Test, which is an absolutely brilliant quirky journalistic journey through Broadmoor, Scientology and DSM IV. He had an interesting Guardian article on DIY science published on Friday. He interviewed the guy who attempted to split the atom in his house, but more interestingly (at least to me) was the section on Yvonne Pambakian’s attempts at drug development in her cottage:

Five years ago, on 20 June 2007, she made an emergency call from the cottage. Her 22-year-old sister, Yolanda Cox, had gone into anaphylactic shock. When the paramedics arrived, they asked Pambakian what had happened.

“I gave her a drug for her asthma,” she told them.

Yolanda was rushed to the Royal Free hospital where a doctor, Alexander Mackay, asked her and her mother to explain exactly what they’d injected into her.

“They wouldn’t say,” he later told the coroner. “They said I didn’t need to know anything and the drug was extremely safe.” It seemed they were trying to protect some secret ingredient they’d been developing. “Some time later,” Mackay told the coroner, “they brought in paper information in two files.” The family were, in fact, injecting each other in their kitchen with an experimental drug of their invention, which they’d called B71.

Yolanda died a week later, on 27 June 2007.

Pambakian and her mother, she tells the hearing, began their experiments back in the mid-90s, pooling their areas of expertise (she’s a GP, her mother an immunologist). One day, they had a kind of eureka moment. To summarise it: some diabetes sufferers have an autoantibody that’s responsible for their resistance to insulin, and the Pambakians supposed that, as insulin resistance is so uniquely destructive, if they could derive a peptide from the autoantibody, it would be uniquely curative. So they did, and they called it B71. They began posting patent applications. B71 would treat – and this is just a small sample – asthma, diabetes, psoriasis, eczema, Alzheimer’s, schizophrenia, depression, Parkinson’s, migraines, multiple sclerosis, premature baldness in men, obesity, inflammatory bowel disease, asthma, cystic fibrosis, insomnia, cancer and HIV.

This sort of thing is far more common than you’d think, particularly in the US where quack autism and cancer treatments are peddled in the name of “research”. Sometimes defended by the use of litigation.

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