Crowdfunding’s dark side: When patients seek help paying for stem cell treatments, misinformation rules

Should you donate to a friend’s or family member’s crowdfunding campaign to help pay for medical costs?

It may seem like an easy answer, but a new study indicates how thorny that decision can be — particularly when people seek money for unproven stem cell treatments that are not covered by health insurance.

By parroting the marketing messages of the clinics they want to utilize, patients’ crowdfunding campaigns often exaggerate the effectiveness of such treatments, according to a research letter published yesterday in JAMA. They also tend to downplay the risks.

HealthNewsReview.org has written about how news stories about crowdfunding campaigns often don’t examine whether there is evidence that the procedures actually work. This new study emphasizes why that matters.

“The exaggerated claims that you find on the stem cell companies’ web sites are basically baked into the crowdfunding campaigns,” said University of Minnesota bioethicist Leigh Turner, PhD, one of the authors.

Turner said while the paper suggests a need for physicians to discuss the evidence around unproven treatments with patients, the findings also bolster the evidence that unproven stem cell clinics are a “predatory marketplace that often exploits people who have quite limited financial means.”

Yet patients and their families may be unaware that they’re falling prey.

“These are people who are highly motivated to think this is something that might work for them,” said co-author Jeremy Snyder, PhD, an associate professor in health sciences at Simon Fraser University. “They’ve bought into the hype.”

In some cases, crowdfunding campaigns examined in the study even went beyond the claims made by the stem cell clinics themselves, Snyder said, with messages claiming a treatment would “cure my cancer,” “make me walk again, or “cure my MS,” referring to multiple sclerosis.

Nearly 90% of campaigns made unfounded claims

Researchers looked at campaigns that appeared on crowdfunding web sites GoFundMe or YouCaring between August and December of 2017, which sought donations for stem cell interventions advertised by 50 different companies. Nearly 90% of the campaigns made optimistic or definitive claims that the procedures would work.

The study found that 44% of campaign pages made statements that were “definitive or certain about the intervention’s ability to work,” and another 30% made statements that were “optimistic or hopeful that the intervention would work.” Fifteen percent made statements of both kinds. Only 11% did not make effectiveness claims.

It also found 36 mentions of risks, all of which claimed the intervention had low or no risks compared with alternative treatments.

The campaigns sought more than $7.4 million and received pledges of about $1.4 million from 13,050 donors. The authors said the study likely underestimated the number of crowdfunding campaigns for stem cell interventions, since it looked at only two funding platforms and did not track campaigns for procedures at non-U.S. stem cell clinics or for U.S. providers established after February 2016.

The new findings suggest that crowdfunding campaigns also might have a wider impact than previously appreciated. The 408 campaigns that were studied were shared 111,044 times on social media such as Twitter and Facebook, researchers found.

Need for improving access to good information

The list of conditions for which stem cells offer a proven benefit is small; consumers can find current, evidence-based information about stem cell treatments in this report from the International Society for Stem Cell Research.

University of Wisconsin law professor Alta Charo, who works with the society, said crowdfunding “is certainly capable of exacerbating the problem” of public confusion over the effectiveness of stem cell treatments.

While not speaking for ISSCR, she said via email it is “almost impossible to eliminate bad information in this era of internet erasure of national boundaries,” and there’s a need to increase public access to reliable data.

It can be helped by voluntary cooperation from search engine companies, on-line product purchasing companies, and social media platform companies if they agree to respond promptly to reports of false or misleading items that pose a risk to patients. This can be difficult, of course, as we are learning from observing Facebook’s recent efforts to respond to false news items being planted and disseminated through its service.  But that doesn’t mean it isn’t worth trying.

Journalists may also have a role.

While it’s understandable that reporters with local newspapers and TV stations cover crowdfunding campaigns because of the sad stories involved, Turner said, “the problem is they don’t take the step of looking at the businesses themselves. Local reporters will basically take the campaigns at face value. They will basically treat this as an established therapy.”

Are clinics pushing patients to create campaigns?

The researchers said they are working on a longer paper that will describe their findings in detail, including examples of messaging in crowdfunding campaigns.

They also noticed that most crowdfunding campaigns involved treatments at just a handful of clinics, raising further ethical concerns.

“Is that because those clinics are pushing their patients to create crowdfunding campaigns? Future research is going to try to take a close look at that question,” Turner said.