Bottom Line: Crowdfunding campaigns by patients to raise money to pay for unproven stem cell treatments not covered by insurance often underemphasize risks and exaggerate the effectiveness of these treatments.
Why The Research Is Interesting: Insurers typically won't pay for unproven stem cell treatments so patients must pay out-of-pocket or fundraise to get the money, often turning to online social networks to solicit donations in crowdfunding. Crowdfunding raises questions about how benefits and risks of the treatment are depicted in solicitations for money.
What and When: 408 crowdfunding campaigns for stem cell interventions as of December 2017 on two charitable crowdfunding platforms
Study Measures: Amount of funding, donors, share on social media and statements about the perceived risks and effectiveness of these interventions.
Authors: Jeremy Snyder, Ph.D., Simon Fraser University, Burnaby, British Columbia, Canada and coauthors
Results: The 408 crowdfunding campaigns sought more than $7.4 million and received pledges of about $1.4 million from 13,050 donors.
Of the 408 campaigns:
- 44% made statements that were definitive or certain about the intervention's ability to work
- 30% made statements optimistic or hopeful that the intervention would work
- 36 mentions of risks claimed the intervention had low/no risks compared with alternative treatments
Study Limitations: The study likely underestimated the number of crowdfunding campaigns for stem cell interventions
Study Conclusions: These findings suggest that medical crowdfunding campaigns convey potentially misleading messages about stem cell-based interventions.These claims may be especially powerful when embedded within compelling personal narratives.
For more details and to read the full study, please visit the For The Media website.
(doi:10.1001/jama.2018.3057)
Editor's Note: Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.
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Journal
JAMA