Charlatans, crowdfunding, and the ethics of it all.

The University of Alberta’s Prof. Timothy Caulfield, everyone’s favourite scientific belabourer of ignorant celebrities, is in the latest number of Lancet Oncology with an interesting piece of correspondence. His co-author is Simon Fraser University medical ethics specialist Jeremy Snyder, and the pair have made a quickie study of crowdfunding campaigns for alternative cancer treatments on the Gofundme online platform, which is the dominant service of its kind. Gofundme is often used to raise money that is destined to go into the pockets of purveyors of medicine that is useless at best. We have here an ostensible social problem, and the first step to solving it must be to gather data.

Their technique, in trying to take measurements of snake-oil pathology, was to create a sample of crowdfunding campaigns that mention both cancer and homeopathy. They chose homeopathy because, although they do not put it in these words, homeopathy is especially stupid. It would be hard to judge, if one had to, between the bogusness of homeopathy’s theoretical basis and the vacuity of the empirical evidence in its favour. Searching for the word “homeopathy” and its variants should yield a group of the firmest, most determined dissenters from accepted medical advice. Looking at and sorting these people might help us understand others who go in for less ridiculous or more plausible divergences from mainstream treatment.

That’s the idea, anyway. Snyder and Caulfield offer three key findings after extracting and examining a sample of a couple hundred crowdfunding appeals:

1. The people who wanted money to pay for home op at hi c cancer treatment were also, considered as a group, into every other form of quackery you can imagine. Of the 220 campaigners surveyed, 85 mentioned pursuing some kind of dietary anti-cancer magic. Sixty-eight were gobbling nutritional or herbal supplements. Thirty were megadosing with vitamin C. The list goes on, at astonishing length, past acupuncture all the way to magnets. It seems that if you believe in homeopathy, it is possible for you to believe in anything.

2. When crowdfunding appeals included personal names, Snyder and Caulfield looked for matching obituaries — and found a lot of them: at least 62 of the campaigners died after asking for cash. It was, as the authors say, “a very ill group.” (They do not add “and obviously a fairly sincere one.”)

3. The campaigners, as Snyder and Caulfield see it, fell into three main categories, and these categories were roughly equal in size within the larger sample. There was a group that was still accepting conventional therapy along with the expensive flim-flam; its members were simply determined to try everything, and imagined that homeopathic remedies might somehow strengthen or “enhance” their ordinary medication. There was a group of explicit rejectors, ultra-skeptical patients who refused “synthetic” treatments outright. And there was a despondent group whose members had exhausted their finances, their insurance, the standard pharmacopoeia, or all three.

This all gives physicians and policymakers a lot to think about. The purveyor of homeopathic remedies, or of any alternative-medicine ideology that has failed formal scrutiny, can charge an extremely vulnerable customer just about whatever he likes. If homeopaths and their fellow travellers have any defence for their existence at all, it ought to be that homeopathy is affordable. Indeed, this defence is always offered: I am sure that of Snyder and Caulfield’s 220 beggars, more than 200 could and would give you a prolonged off-the-cuff lecture about Big Pharma’s economic predation.

The mere fact of a GoFundme sub-industry devoted to homeopathy, some of it in places where homeopaths are meant to be regulated by statute, is horrendous in itself. I am less sure about the prescription for this ill. I am an admirer of Tim Caulfield for his energy and creativity in battling disgraceful,

THEY CHOSE HOMEOPATHY BECAUSE (IT) IS ESPECIALLY STUPID.

expensive forms of “alternative” medicine that wouldn’t be alternatives if they were really medicine. Moreover, the Lancet letter he has cosigned is the sort of laborious fundamental taxonomy that always stand sat the beginning of useful inquiry.

But in the text of the letter, Snyder and Caulfield suggest gently that “partnerships” with websites such as GoFundme “should be sought to combat the worst forms of harm and misinformation” to which cancer patients are exposed. The hint is that Gofundme is ethically responsible for any inadvisable uses to which its technology is put. (Or perhaps it is just that assigning responsibility to Gofundme is the most expedient avenue of attack on the underlying problem.) The obnoxious charlatans charging innocent, ill dunderheads for scented cancerfighting potions are not on the site, but it is tempting to subvert them by holding the site hostage and forcing its managers to police fundraising campaigns.

Set aside the likely effectiveness of such a policing scheme, which is zero: I just wonder if we are still in the realm of ethics rather than economics. Snyder and Caulfield propose that “crowdfunding is enabling individuals to forgo proven cancer treatment by financing unproven alternatives.” The technology may also be enabling terminally sick people to raise money for a longshot by accumulating small donations no one will miss, rather than destroying their own families’ inheritance. Nothing in their inquiry actually tells us, or can do so.