(Tumisu, Pixabay)
9 May 2018. More people now use crowdfunding campaigns to raise money to cover families’ medical costs, but the technique is also used to support treatments from stem cell clinics that exaggerate their outcomes and minimize their risks. A review of these campaigns on 2 crowdfunding platforms appears in yesterday’s issue of JAMA – Journal of the American Medical Association.
As reported by Science & Enterprise in July 2016, University of Minnesota bioethicist Leigh Turner and stem cell researcher Paul Knoepfler at University of California in Davis found nearly 600 clinics in the U.S. claiming to offer stem cell treatments, many having dubious scientific or medical validity. Their analysis shows the clinics often provide treatments for orthopedic and pain disorders, but also for anti-aging and cosmetic applications, including face lifts and breast augmentation, as well as more serious conditions such as spinal cord injuries, and immunological, cardiac, pulmonary, vision, and urological diseases.
In this study, a team led by health science and ethics professor Jeremy Snyder at Simon Fraser University in Burnaby, British Columbia, Canada with Turner and geographer Valorie Crooks at Simon Fraser, investigated the use of crowdfunding campaigns to support treatments at these clinics. The authors note most insurance companies do not cover treatments from these clinics, leaving their patients to pay out-of-pocket for their services. As a result, many of their patients turn to crowdfunding campaigns.
Snyder and colleagues reviewed campaigns on the two leading charitable crowdfunding sites in terms of money raised: GoFundMe and YouCaring. (In April 2018, GoFundMe acquired YouCaring.) The team searched the sites for references in campaigns online between August and December 2017, to 315 stem cell clinics in the U.S. marketing directly to consumers that Turner and Knoepfler identified in their 2016 report. For each hit returned, the researchers documented the statements made about the treatments’ efficacy, risks to patients, and funding requested and received. The team also reviewed associated shares on social media that amplified the campaigns.
The results show more than 400 crowdfunding campaigns on the 2 sites raised nearly $9 million for direct-to-consumer stem cell treatments in that 5 month period. The researchers found the vast majority of those campaigns, 358, on GoFundMe, with the remaining 50 appeals on YouCaring. In addition, the campaigns were shared on social media more than 111,000 times. These campaigns raised $7.4 million directly with another $1.5 million pledged for payment later.
Nearly all of the campaigns made definitive or optimistic claims about the efficacy of stem cell treatments, while few mentioned the risks. Nearly half of the appeals (44%) made definitive claims about the effectiveness the treatments, while another 30 percent expressed optimism or hope for efficacy, with still another 15 percent made both definitive and optimistic claims. But in only 36 of the 408 campaigns, 9 percent, did requesters mention risks of any kind, and according to the authors, those statements indicated risks were minimal or non-existent compared to alternatives.
The authors point out that their investigation reviewed campaigns on only the 2 crowdfunding sites, thus the real number of fundraising campaigns likely is higher. But the researchers add that the use of crowdfunding, combined with compelling personal narratives, could very well amplify the messages of direct-to-consumer stem cell clinics, despite their dubious claims of efficacy and risks to patients. The authors offer no immediate solutions, but suggest physicians may need to intervene if they find their patients use unlicensed stem cell clinics and raise funds from crowdfunding sites to pay for them.
More from Science & Enterprise:
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- FDA Clears Consumer Genetic Breast Cancer Risk Tests
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- Agencies Send Warnings to Halt Opioid Cessation Scams
- FDA Sets Genetic Health Test Review Process
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