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Medical crowdfunding steers millions in donations to dangerous snake oil

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Kevin Lomangino is the managing editor of HealthNewsReview.org. He tweets as @KLomangino.

We’ve written extensively about the dark side of medical crowdfunding — how donations meant to help desperate patients may perversely promote useless and dangerous interventions.

We’ve also looked at the news industry’s complicity with these misguided campaigns — how the crowdfunding stories journalists latch onto often aren’t appropriately vetted and can perpetuate harmful health disparities.

But we don’t have much hard data about these trends, and most of what we have relates to unproven stem cell approaches. That’s why a new study published in the Journal of the American Medical Association on Tuesday is important; it clarifies and extends our knowledge about crowdfunding for five categories of dubious treatments that are commonly on the wish lists of fundraisers. The analysis covered a brief window during the fall of 2017 where the researchers looked at campaigns on popular crowdfunding sites such as GoFundMe. The authors, led by New York University ethicist Arthur Caplan, PhD, summarized their findings in a blog post at Health Affairs:

In our snapshot of this widely varied array of treatments, we found a total of $6.77 million raised for the five treatment categories we targeted, most of it ($3.46 million) going to homeopathic and naturopathic quack cancer cures. Donors chipped in $1.2 million toward helping expose 188 people to stems cells for brain injury, which is highly concerning, given that the consequences can be devastating: strokes, infections, or death. While there are a number of real medical trials underway (for which subjects needn’t raise funds to participate), there are no legitimate, safe stem cell treatments for brain injury on the market.

Leigh Turner, PhD, an ethicist at the University of Minnesota who’s studied stem cell crowdfunding and wasn’t involved with the new research, says it’s especially concerning to see millions of dollars flowing to businesses selling dubious treatments for cancer. “Likewise,” he said, “the research team found $785,421 spent on hyperbaric oxygen for brain injury and $689,363 for long-term antibiotics reportedly intended to treat Lyme disease. That’s a lot of money being funneled to clinics that at best are marketing useless medical interventions and at worst are exposing patients to risky unproven medical interventions.”

How do we deal with this?

In their Health Affairs commentary, Caplan and colleagues note that the power of social networks can be harnessed for beneficial or nefarious purposes. They say that the onus increasingly falls on these platforms to protect their users from misinformation.

In a complicated information ecosystem, GoFundMe and its competitors must allocate appropriate resources to monitor, flag, and downplay problematic campaigns, and users need to remain vigilant about where they donate and why.

There’s no single right way to accomplish this task, which we expect can be augmented through artificial intelligence algorithms loaded with target keywords and phrases, in the same way that Facebook is attempting to augment its detection of fake news. A distillation of such results could then be bumped up for human review and decision making. To balance inequities, a percentage of medical crowdfunding campaigns could be donated automatically to related nonprofit research.

Turner, however, takes a harder line. He says GoFundMe has shirked its moral and legal responsibility to review the content of crowdfunding campaigns and has allowed itself to be exploited to spread health-related misinformation. He says it needs to take immediate steps to address abuses and offers several practical remedies that can be implemented.

  • Take the terms of use seriously: GoFundMe claims to prohibit campaigns for products that haven’t been approved by national regulatory agencies, Turner says, but in reality does nothing to stop campaigns for stem cell interventions which haven’t received such approval. This should stop.
  • Clear up ambiguity:  Despite offering cautionary notes about “stem cell therapies,” GoFundMe also offers practical tips for creating campaigns intended to solicit donations for unproven stem cell interventions and other purported treatment for which evidence of safety and efficacy is lacking. This inconsistency needs to be addressed.
  • Provide tools to educate users:  Prospective crowdfunding campaigners and donors need effective tools for distinguishing evidence-based medical interventions from bogus health claims. At present it’s mostly “an echo chamber and signal booster for businesses selling 21st century snake oil,” Turner says.

One must wonder, of course, whether financial considerations impact GoFundMe’s reluctance to act decisively — and how much those millions spent on misguided campaigns help boost the company bottom line.

Whatever the reason, there’s a fundamental hypocrisy in GoFundMe’s approach to medical fundraising that needs to be tackled head on, Turner believes.

“They need to stop claiming that their websites serve only to help people obtain access to needed medical interventions,” he said. “Instead, they must acknowledge that their platforms often help patients access medical procedures or products that are useless and in some cases even dangerous. Better screening tools and information guides would put some online guardrails in place and help steer crowd funders and donors toward more evidence-based forms of medical care.”

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Scott Dunaway

October 29, 2018 at 11:18 am

Hemopoietic stem cell transplant is more of a treatment using chemotherapy than stem cells and has been extremely successful in clinical trials for multiple sclerosis and other auto immune disorders for more than two decades. Extremely successful is almost an understatement when looking at the documented results. Yet they still can’t figure out if it works? Even the safety of less than 1 percent chance of death is almost a secret. Because of the profitability of regimental multiple sclerosis drugs is there no incentive to approve this one time treatment that remarkably is many times more affective for multiple sclerosis than current overpriced lifetime regimental drugs. So, like myself, and I am one of more than 3000 others, I had no choice but to fund raise and do the treatment abroad. This article breaks my heart for those with multiple sclerosis who can see the results of more than 20 years of clinical trials to only be denied acces because of the huge amounts of money made from converting Rituxan into Ocrilizumab. Then realizing they were denied Rituxan for a decade while pharmaceuticals waiting for a patent. Then on top of that they have to wade through negative media being that it is called a stem cell treatment though the stem cells or only used to replace a compromised immune system from the chemo. It is the chemo doing the work. For your average person crowdfunding for what is unfortunately called, a stem cell treatment, is the only path around these selfish bastards. And thank God at least there is a path.

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