Medical crowdfunding has become a billion-dollar industry practically overnight, led by sites like GoFundMe. But yet another new study shows a dark side of the trend: Millions of dollars funneled to ludicrous, unscientific treatments for life-threatening diseases like cancer. Tragically, the study also found that many of the desperate people at the center of these campaigns died despite whatever treatments they sought.
The authors of the study, published Thursday in The Lancet, searched for a particular kind of medical crowdfunding campaign on GoFundMe: campaigns for cancer treatments that involved the use of homeopathy. Homeopathy might easily be considered the lowest-hanging fruit of medical quackery. The theory behind how it works is nonsensical (in short, its proponents claim water can be programmed with the “memory” of toxic substances that will then treat the symptoms they normally cause); there are no good studies that show it works; and its practitioners are some of the most brazen cranks this side of P.T. Barnum still kicking.
“These treatments are the bunkiest of the bunk, just complete garbage,” lead author Jeremy Snyder, a bioethicist at Simon Fraser University in Canada, told Gizmodo.
Snyder and his co-author found that over 200 GoFundMe campaigns, as of June 2018, had been created to help fund homeopathic cancer treatments. The majority of these campaigns were based in the U.S. (85 per cent) or Canada (10 per cent), and were shared on Facebook more than 100,000 times in total. They collectively asked for more than $US5 ($7) million in funding, and raised $US1.4 ($2) million from over 13,000 donors.
Many of the campaigns made a point to stress that these treatments were a last resort for the ill person. Sometimes, they noted that the person would still be using conventional cancer care alongside the alternative treatment. But a third of campaigns explicitly stated they would use the money to pay for treatments for people who chose to avoid doctors. An example of a typical refrain in those cases was that the person had chosen natural alternatives over “synthetic medicines.”
Snyder and his co-author also tried to find out what ultimately happened to the people behind all these campaigns. Sometimes, the campaigns would have final updates reporting the person had died; other times, they were able to track down obituaries. In total, they found that 28 per cent of the people had died by the time of their search. But even that might be an underestimate, considering the few indirect sources of data available to the pair.
Given the poor prognosis many of these cancer patients must have had, that number might not seem so surprising. But seeing as how many people chose to forgo standard care, it’s worth wondering if their deaths could have prevented. At the very least, that money could have instead been used to make their final days more comfortable with palliative care. Other research has shown that cancer patients who reach for alternative medicine over conventional medicine are more likely to die.
“I have a huge amount of sympathy for these people. They’re very sick and desperate,” Snyder said. “But it’s concerning to see them be taken in by these claims.”
That’s to say nothing of the kind people who are being roped into donating their money to medical charlatans. Other researchers studying the topic have argued these sites are essentially jumpstarting a new era of snake oil medicine, a sentiment Snyder agreed with. Yet despite repeated criticisms from scientists and other journalists, sites like GoFundMe have stayed mostly silent in the matter.
“I’ve talked to them a little bit, and I know they’re aware of these studies,” Snyder said. “But I haven’t gotten very far with them personally.”
A spokesperson for GoFundMe provided this statement to Gizmodo: “Our role is to provide users with social fundraising tools to raise money for their cause or need. While we hope to be a helpful resource for personal fundraising, we believe it is not our place to tell them what decision to make. That said, GoFundMe is an open platform and ultimately it is up to the GoFundMe community to decide which campaigns to donate to. We always encourage people to fully research whatever it is they are raising money for and to be absolutely transparent on their GoFundMe page, so donors can make an informed decision on what they’re donating to.”
There’s likely to be some argument over what criteria could be used to regulate crowdfunding campaigns. Stem cell therapy, for instance, is genuinely an exciting, promising field for regenerative medicine. But there are also clinics that are offering untested, potentially dangerous treatments to patients—and some are even explicitly telling customers to use crowdfunding to afford them.
All that nuance should go out of the window when talking about homeopathy, though. Just last year, a homeopath got in trouble for selling audio recordings he claimed would protect the listener from Ebola. It’s not unreasonable to think, Snyder said, that crowdfunding sites could develop ways or hire staff to screen out campaigns for the very worst bunk out there, like homeopathy. And it’s beyond time they should, he added.
“There are ways to solve this—and I’m not saying it’s not a difficult problem. But they’ve not wanted to go down that path so far,” Snyder said.