Local look at dichloroacetate (DCA) hysteria

I hope Orac won't mind but with him in a surgical conference in DC right now, he may not have seen Matt the Heathen post in the comment thread at Respectful Insolence about a superb article that appeared in today's Edmonton Journal, "Possibly fatal at $2 a pop," by Jodie Sinnema.

Jodie's interview with the University of Alberta investigator and author of the original DCA anticancer paper illustrates the level of interest in this public-domain chemical:

Dr. Evangelos Michelakis, the cardiologist and researcher whose academic paper sparked the worldwide fervour surrounding DCA, said people shouldn't take the compound until clinical trials prove the drug is safe for humans and actually shrinks tumours, as it did in rats.

"We are concerned," said Michelakis, who set up a website with the U of A saying he doesn't condone or advise the use of DCA in humans. The site has received more than 141,000 hits and Michelakis has received more than 10,000 e-mails from people eager to become involved in clinical trials.

"We absolutely do not support the use of this drug to patients with cancer any way out of a clinical trial. There are a number of risks associated with it, and unfortunately patients and physicians are exposing each other to these risks."

Perhaps more interestingly is that Jodie scored an interview with a California biologist named Jim Tassano, the apparent "Heather Nordstrom" who started thedcasite.org and buydca.com.

Yet Jim Tassano, a biologist in Sonora, Calif., said he created the DCA website in early February because he doesn't want his ballroom dance instructor to die of cancer. The website, www.thedcasite.com, is a direct result of Michelakis's research, Tassano said.

Tassano and a chemist from the University of California have begun making DCA and selling it over the Internet. The buydca.com site says the compound is for experimental treatment for pets with terminal cancer, but Tassano said he knows people are buying it for themselves or family members as well.

Well, so much for the disclaimers on the website that the compound is only to be used in pets.

Tassano is also fueling sales of DCA by asking readers of his website for testimonials on their use of his product. Fortunately, Michelakis comes down hard on this practice:

"It's a public health threat if you start using on your own and acting out of your own desperate situation," he said, noting that people taking DCA have no mechanism to formally report side-effects and complications. Nor can they know if the compound is pure.

"That's the worst nightmare in medicine, to start making judgments on whether a drug is good or bad based on what any patient will post on a blog. This is the death of medicine and organized research as we know it."

And, finally, Michelakis again, this time on his angst over the misguided practices of those exploiting the work of his laboratory:

"You produce your science and you let the world know that there is a potential new way of treating cancer and you do the right thing," he said. "You move right away to clinical trial and you try to prove that your claims or your hopes were right. Unfortunately, we cannot prevent people taking advantage of people and trying to distribute this drug for other reasons. We can only be careful what we say and what we do."

A very well-written and well-researched article by Jodie Sinnema.

(Hat tip: Matt the Heathen)

Links to my previous posts on dichloroacetate:
The dichloroacetate (DCA) cancer kerfuffle
Where to buy dichloroacetate...

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This whole DCA thing to me is an interesting example of how a badly chosen phrase can be amplified into an anti-authority cry and then hyped to desperate people. I think DCA would have nothing like this craze if whoever (wrongly) said that it would be hard to get research funds because drug companies couldn't make money from DCA had just not said that. Aside from the fact that it isn't true, that remark is why the story was picked up so much. It to me is also why people went from - possible not funding -> coverup by drug companies -> we have cure for cancer -> I have advanced cancer and nothing is working so I am going to buy this stuff -> I don't like chemo, lets try this...

The fact that drug companies are acting totally amorally with things $40K pricing on drugs that cost much less than $10K to make while spending as much on policy and ads as on research don't help matters, of course.