Over two years, more than 1,000 medical crowdfunding campaigns raised nearly $7 million for scientifically unsupported or potentially dangerous treatments, according to a new research letter in the Journal of the American Medical Association.
Medical crowdfunding is part of a growing phenomenon in which individuals rely on the expansive reach of the Internet to make appeals to raise money for a specific goal. Think Kickstarter for creative projects, Experiment for scientific research and Indiegogo for tech entrepreneurs and their gadgets. In medical crowdfunding, people usually are raising money to pay for their own or a loved one’s medical bills.
According to the research in JAMA, GoFundMe is the largest medical crowdfunding platform. By 2016, all campaigns (both medical and otherwise) on the platform raised $3 billion.
The rise of medical crowdfunding is “kind of a symptom of our failing health insurance system in this country,” said Ford Vox, lead author of the paper and a rehabilitation medicine physician at the Shepherd Center in Atlanta, in a recent phone call with Journalist’s Resource. Oftentimes, people turn to the social platforms because of gaps in their insurance coverage, in an attempt to fill those gaps.
But medical crowdfunding has introduced a different kind of failure into the system — opening up access to potentially dangerous experimental therapies that might have been prohibitively expensive without the assistance offered by outside funds.
“A lot of these direct campaigns do represent going outside that [health care] system that is designed for your safety,” Vox said.
He suggested that two groups who might seek out these treatments are those who don’t like the options offered by traditional medicine or people who have otherwise exhausted their options.
To get what Vox called a “snapshot” of the extent to which medical crowdfunding supports scientifically dubious or potentially dangerous treatments, Vox and his team searched for five of them on four crowdfunding platforms: GoFundMe, YouCaring, Crowdrise and FundRazr. The treatments included:
- Homeopathy or naturopathy for cancer: A review published in the Journal of Oncological Sciences describes homeopathy as using dilute versions of substances that would, in a healthy person, cause the symptoms a patient is experiencing to treat those same symptoms. The authors of the review write, “The studies carried out up to date have provided no strong evidence supporting the use of homeopathy in any clinical condition.”
- Hyperbaric oxygen therapy (HBOT) for brain injury: Vox said that this treatment, which involves inhaling 100 percent oxygen in an enclosed chamber, “has not reached a threshold where standard rehabilitation providers recommend it.” It costs between $200 and $400 per session, according to a Washington Post article on the treatment.
- Stem cell therapy for brain injury and spinal cord injury: Research published in Future Medicine highlights how businesses market ‘pay-to-participate’ stem cell therapies that have not received FDA approval directly to consumers. “When you look at a lot of these listings, and look at study design, I think it’s fair to say what we are looking at here, for the most part, is a marketing exercise,” the study author, Leigh Turner, said in an interview with IRB Advisor. He noted that these treatments can cost “$20,000 a pop.”
- And long-term antibiotic therapy for chronic Lyme disease: A randomized trial of this treatment, the results of which were published in the New England Journal of Medicine in 2016, found no benefit as compared with shorter-term treatment.
The researchers identified all the campaigns for these five treatments posted in the U.S. and Canada over a two-year period, between November 2015 and December 2017. They identified the locations of the clinics where campaigners intended to seek treatment and added up the amount of money sought by these campaigns, which they compared with how much the campaigns actually raised. The study makes the assumption that campaigners used funds on the treatments specified, however, this may not have been the case.
Here’s what the researchers found:
- There were 1,059 campaigns to fund the scientifically unsupported treatments in question. The vast majority of these campaigns (98 percent) were on GoFundMe.
- These campaigns aimed to raise over $27 million in total. In actuality, they raised $6.8 million.
- Campaigns for homeopathic or naturopathic cancer treatments raised the most money – nearly $3.5 million for 474 campaigns.
- Campaigners sought treatment at clinics in Germany, Mexico, Panama, Thailand, India, China and the United States.
The study does not address what portion of medical crowdfunding goes to unproven or potentially dangerous treatments, as compared with expenses for scientifically proven medical treatments. However, Vox said that the study “did not give me the general impression that the majority of medical crowdfunding is for bad stuff.”
He also wasn’t able to quantify whether and how patients are being harmed by these campaigns, though he said, “I would wager that some real harm is occurring given the numbers involved.”
He added that as medical crowdfunding grows exponentially each year, “We’re talking about something that’s on the order of magnitude that it could actually start to change the nature of medicine in the United States.”
Beyond concerns about supporting fraudsters and harming patients, Vox noted an “inherent unfairness” to the crowdfunding model, with respect to who is successful and who isn’t in reaching funding goals for a campaign.
Vox and his colleagues published a commentary in Health Affairs that further outlines ethical concerns about the practice as a companion to the research letter.