Another study has found that when well-meaning people donate to crowdfunding campaigns raising money for medical treatments, that cash sometimes ends up in the pockets of people offering useless or even dangerous therapies.
Last month, a report found that online crowdfunding campaigns based in the UK frequently give money to medical quacks who claim they can cure otherwise untreatable cancer cases. But the U.S. isn’t immune to these scams either, according to a new study published Tuesday in JAMA. Crowdfunding sites here are also allowing people to donate millions of dollars to bankroll ineffective treatments like homeopathy for serious illnesses.
The research was led by Ford Vox, an ethicist and doctor at the Shepherd Center, an Atlanta-based clinic that specializes in spinal cord and brain injuries. Vox and his colleagues had become well-acquainted with crowdfunding sites like GoFundMe in recent years, since many patients are often forced to supplement their expensive medical care with donations. But while Vox has appreciated the value of these sites, he’s also noticed brain injury patients and their families using crowdfunding to pay for dubious treatments like hyperbaric oxygen therapy (HBOT).
HBOT exposes people to bursts of 100 percent oxygen at high pressure levels. And while HBOT is used to help people recover faster from skin wounds that are hard to heal, like those suffered by diabetics, there’s no good evidence that it can significantly help treat serious brain injuries.
“We thought it was really unfortunate to see people raising for that treatment when there’s so many other things that money could have gone towards,” Vox told Gizmodo. “It just occurred to me, boy, I wonder how much of this is going on.”
After a brief sweep of crowdfunding sites, the team decided to search for campaigns based in the U.S. and Canada raising money for five suspected crank treatments: HBOT for brain injury, stem cell treatments for spinal cord and brain injury, homeopathy or naturopathy for cancer, and long-term antibiotic therapy for chronic Lyme disease. They then looked for campaigns in four major crowdfunding sites: GoFundMe, YouCaring, CrowdRise, and FundRazr.
From 2015 to the end of 2017, they found, users had asked for over $27 million in funding for these treatments. And they ultimately received $6.77 million. Because some of the campaigns were still active by the end of the study period, though, it’s possible more money could have poured in later. The majority of this money ($3.46 million) was spent on homeopathic and naturopathic cancer treatments, while another large chunk ($1.2 million) went to people seeking stem cell therapy for brain injuries. And nearly all of this money (98 percent) was raised through GoFundMe.
Homeopathic remedies typically don’t contain any active ingredients at all, since their supposed healing power comes from the heavy dilution of a substance in water that leaves behind a “memory” of the substance’s otherwise toxic effects. In other words, it’s a glorified placebo. So they aren’t necessarily dangerous on their own.
But the other therapies certainly can be harmful. Stem cell treatments, especially those performed at shady clinics that promise they can treat virtually any condition, have caused blindness, paralysis, and death in some users. And though there is still debate over the nature of chronic Lyme infection, research has generally shown that long-term antibiotic therapy doesn’t seem to help people claiming to suffer from chronic Lyme symptoms, and that it can come with serious, even life-shortening side effects.
Even without any side-effects, Vox also points out that patients can still be harmed by homeopathy and other alternative treatments if they are relying on them in place of conventional medical care. And indeed, a study earlier this year found that people who use alternative medicine in their cancer care die sooner than people who avoid it.
Leaving aside the health risk, what’s especially concerning to Vox and his team is the impact these websites could be having in keeping medical scams alive and well. Already, he points out, stem cell clinics often suggest crowdfunding as a way for prospective patients to afford their services.
“Quack medicine has always existed. But it’s been somewhat restrained by the fact that people had to use their money for it,” he said. “We’re talking about a level of dollars here that could be a game changer for the field.”
GoFundMe alone is thought to have raised billions in medical crowdfunding since its arrival eight years ago—more than any other type of funding available on the site. And while quack funding might only represent a sliver of that pie, Vox is just the latest doctor to call for reforms in how these platforms operate.
“They’ve got to accept some responsibility here, and do what they can to mitigate that harm,” he said. “When you talk about healthcare, you’re talking about something that’s deadly serious.”
Some solutions proposed by Vox and others include algorithms that would flag crowdfunding for fishy treatments, coupled with human employees who could review these cases.