Nearly half of the crowdfunding campaigns that aim to raise funds for stem cell–based treatments claimed efficacy would be “definitive or certain,” according to findings published online today in a letter in JAMA.
Patients seeking unapproved stem cell–based interventions that are not covered by insurance often turn to social media and crowdfunding campaigns to raise the funds needed for the treatments.
To better understand the expectations patients have when seeking such treatments, Jeremy Snyder, PhD, an associate professor of health sciences at Simon Fraser University in Burnaby, British Columbia, Canada, and colleagues investigated the language used in crowdfunding campaigns.
They searched campaigns on GoFundMe and YouCaring for names of companies listed in a 2016 report from coauthor Leigh Turner, PhD, from the Center for Bioethics, University of Minnesota, Minneapolis, with Paul Knoepfler, PhD, from the University of California Davis, that identified 351 businesses based in the United States that market stem cell treatments to consumers. A separate search engine verified the candidates and identified other campaigns.
For each identified campaign, the researchers considered the goal amount of funding, the total amount pledged, the number of donors, and the number of shares on Facebook and Twitter. They also identified all statements concerning perceived efficacy and risks of the treatments.
For metrics, the researchers evaluated risk statements as “medium/high” or “low/no risks” compared with alternative treatments and classified efficacy statements as “definitive or certain,” optimistic or hopeful about efficacy, definitive and optimistic, or no efficacy statements.
The researchers identified 408 campaigns (358 on GoFundMe and 50 on YouCaring) asking for funds to support interventions provided by 50 companies. The campaigns requested $7,439,308 in total, received pledges for $1,450,011 from 13,050 donors, and were shared 111,044 times on social media. (Two of the campaigns were posted on both GoFundMe and YouCaring but were presented on social media as separate requests.)
Of those, 178 (43.6%) made statements considered “definitive or certain” about the procedure’s efficacy, 124 (30.4%) were “optimistic or hopeful” about efficacy, 63 (15.4%) made both statements, and 43 (10.5%) had no claims of efficacy.
Only 36 of the campaigns mentioned risks, and these stated that the planned treatment had low/no risks compared to alternative treatments.
“Crowdfunding campaigns for unproven stem cell–based interventions underemphasize risks and exaggerate the efficacy of these interventions,” the researchers conclude. They also warn about the power of the “compelling personal narratives” that are part of crowdfunding pleas.
“The situation parallels that of DTC [direct-to-consumer] marketing of unproven stem cell–based interventions, which has been shown to make hyperbolic claims about efficacy and minimize risks associated with their use,” they continue.
The parallel in language used by the companies and the patients seeking crowdfunding support suggests patients believe the company advertising and indicate the patients further propagate those claims through their own social media postings.
Stem cell crowdfunding requests are a minority, however. The researchers found that YouCaring listed 62,739 campaigns for medical expenses on February 26, 2018. Only 50 for the entire scrutiny period were from YouCaring. GoFundMe doesn’t provide data on the number of health-related campaigns.
A limitation of the study was that it did not cover all crowdfunding platforms or all companies that market stem cell treatments DTC, and so the findings are likely an underestimate. In addition, the authors do not list specific examples of the language used to elicit donations in the crowdfunding campaigns or provide a link to such data.
The researchers conclude by urging physicians to pay attention to these campaigns for unproven stem cells interventions. “The interests of both patients and the public suggest a role for clinicians in actively combating this misinformation by challenging problematic DTC marketing messages,” they write.
The investigators have disclosed no relevant financial relationships.
JAMA. 2018;319:1935-1936. Abstract
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