When her sister was diagnosed with stage 4 breast cancer, Sarah Thorp turned to crowdfunding platform GoFundMe, launching a campaign to pay for her sister to attend the Integrative Whole Health Clinic, an alternative therapy center in Mexico that offers treatments such as coffee and flax seed enemas.
While such treatments don’t have any evidence indicating their efficacy, a lead physician at the clinic claimed a 75 percent success rate since 2000 in patients with cancers like Thorp’s. So, the two spent three weeks at the clinic to the tune of $21,000. Although Thorp says the center gave her sister a sense of hope where there was none, she died just over a year after returning.
Her story is one of many illustrating the extent of these fundraisers for disproven treatments, yet little oversight exists to hold crowdfunding platforms accountable for hosting them, reports an investigation published in BMJ.
In the UK alone, crowdfunding sites for cancer health raised at least £8 million ($10 million) since 2012, much of which was spent overseas, according to data compiled by Good Thinking Society, a charity that promotes scientific thinking.
When people are very ill, project director Michael Marshall says they are at their most vulnerable to someone “offering them disproven treatments that offer little but false hope.” He says crowdfunding sites need to vet campaigns citing alternative therapies that include discredited drugs, extreme dietary regimes, intravenous vitamin C, alkaline treatments, and others with no scientific backing to their efficacy.
“It’s entirely understandable that people when in a health crisis might turn to clinics that make big promises and might find it hard to doubt their miraculous claims,” Marshall told IFLScience.
Perhaps more important, Marshall argues, is the huge role the media plays in “inadvertently promoting and proliferating these false claims.” Many of these treatments are administered by clinics overseas where regulations may be laxer. These treatment centers don’t typically publish data on how effective their therapies are, and instead rely on testimonials of former patients who may not be fully informed.
“Those testimonials – along with the positive media coverage they generate – serve as an advertising tool, but there is seldom any follow-up,” explained Marshall. “Our investigation, in part, performs that follow-up, and we found that more than a third of the patients who seek alternative cancer cures via fundraising appeals subsequently died – usually with a fraction of the attention and coverage that their miracle cure story was afforded.”
Marshall says a good rule of thumb is to follow the advice of qualified medical experts and look for consensus.
“If a treatment is fringe or is rejected by the majority of doctors, there’s usually a very good reason for that. If a treatment makes big promises that mainstream medical professionals do not agree with, then it is probably wise to approach it with extreme caution,” he said.
According to the investigation, GoFundMe says it is “taking proactive steps” in the US to make sure its users are better informed. However, JustGiving says it doesn’t believe the platform has “the expertise to make a judgment.”