Crowdfunding campaigns have raked in millions of dollars for scientifically unproven — and potentially dangerous — medical treatments since 2015, according to a new analysis.
The study, published Tuesday in the Journal of the American Medical Association, turned up 1,059 campaigns that raised money for five unproven or possibly risky treatments: homeopathy or naturopathy for cancer, hyperbaric oxygen for brain injury, experimental stem cell therapy for brain or spinal cord injuries, and long-term antibiotics for chronic Lyme disease. Almost all of the campaigns were on GoFundMe, the largest crowdfunding platform of its kind.
All told, the campaigns hoped to collect more than $27 million. The grand total raised: $6,779,700.01, or one-quarter of the fundraising goals.
Medical crowdfunding “is a huge new economy,” said Dr. Ford Vox, a rehabilitation physician, a professor at Emory University, and an author of the new study.
In some cases, that can be a boon for patients who otherwise might not be able to afford needed medical care. But the new study highlights how the crowdfunding economy allows clinics to promote, and profit from, unproven therapies that could pose risks to patients — and offer false hope.
“People can be desperate in these situations [and] can be taken advantage of,” Vox said. And while that’s long been the case, the practice is “on full display on these crowdfunding campaigns,” he noted.
Vox and his colleagues combed through campaigns posted from Nov. 2015 to Dec. 2017 that contained key words like “homeopathy” and “cancer” and were set up to specifically fund a treatment. The 474 campaigns to pay for homeopathic or naturopathic care for cancer collected the most, totaling nearly $3.5 million. The 190 campaigns looking for funding for hyperbaric oxygen for brain injury raised more than $785,000.
Campaigns to cover the cost of unproven stem cell therapies for brain and spinal injuries raised more than $1.2 million. And the 114 campaigns to pay for long-term antibiotic therapy for chronic Lyme disease raised nearly $690,000.
Scholars who research such campaigns also worry that they elevate treatments not backed by science further into the public view.
“Medical crowdfunding is facilitating the normalization of experimental therapies,” said Valorie Crooks, a health geographer at Simon Fraser University who has studied crowdfunding for health care.
The report identified eight countries that campaigners intended to visit for for experimental care, including clinics in Mexico and Germany for homeopathic or naturopathic treatments and stem cell clinics from Panama to China.
“That takes individuals out of the legal and regulatory environment that exists to protect their health and well-being,” said Crooks, who was not involved in the new study.
The study has its limitations. It only looked at five treatments across four platforms, which also included YouCaring, CrowdRise, and FundRazr, though 98 percent of the campaigns were on GoFundMe. And there’s no way of knowing how people ended up using the money they raised.
Experts say the findings raise two critical questions: Should crowdfunding sites restrict what kinds of care people can raise money for, and should people running a campaign be required to disclose to potential funders that a treatment is unproven?
“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,” GoFundMe spokesperson Heidi Hagberg told STAT, adding that “ultimately it is up to the GoFundMe community to decide which campaigns to donate to.”
Crooks said the question of responsibility is tricky to grapple with — but is increasingly important as the number of medical crowdfunding campaigns continues to rise.
“We’re at a point where there are enough campaigns out there that we’re starting to address the big questions,” she said.
I would note that there is plenty of positive evidence for the efficacy of hyperbaric oxygen treatments and brain injury. It is standard of care in most of the developed world with plenty of scientific studies to back it up. For you to imply otherwise lumping it into a category of “unproven therapies” means you have not done your own homework to understand what this simple delivery of oxygen via basic laws of gas physics will do at the mitochondrial and at the gene level. It is 400 year old technology with reams of research… just because brain injury treatment is not an “approved FDA indication” does not mean it doesn’t work and work well. Google “Dr. Paul Harch”.
Just one more loophole with no regulations at all. It is wide open for thieves, con artists and deceptive marketing. They can “Study”” everything from mindfulness to marijuana, with no actual science. Academia is full of this kind of marketing tied to funding. These biased misleading studies don’t even have to show a benefit, they can all be advertised as if they do. Welcome to post science America!
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