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1.
Snyder  J, Mathers  A, Crooks  VA.  Fund my treatment!  Soc Sci Med. 2016;169:27-30.PubMedGoogle ScholarCrossref
2.
Turner  L, Knoepfler  P.  Selling stem cells in the USA.  Cell Stem Cell. 2016;19(2):154-157.PubMedGoogle ScholarCrossref
3.
Sipp  D, Caulfield  T, Kaye  J,  et al.  Marketing of unproven stem cell–based interventions.  Sci Transl Med. 2017;9(397):eaag0426. PubMedGoogle ScholarCrossref
4.
Ogbogu  U, Rachul  C, Caulfield  T.  Reassessing direct-to-consumer portrayals of unproven stem cell therapies.  Regen Med. 2013;8(3):361-369.PubMedGoogle ScholarCrossref
5.
Lysaght  T, Lipworth  W, Hendl  T,  et al.  The deadly business of an unregulated global stem cell industry.  J Med Ethics. 2017;43(11):744-746.PubMedGoogle ScholarCrossref
6.
Young  MJ, Scheinberg  E.  The rise of crowdfunding for medical care: promises and perils.  JAMA. 2017;317(16):1623-1624.PubMedGoogle ScholarCrossref
Research Letter
May 8, 2018

Crowdfunding for Unproven Stem Cell–Based Interventions

Author Affiliations
  • 1Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
  • 2Center for Bioethics, University of Minnesota, Minneapolis
  • 3Department of Geography, Simon Fraser University, Burnaby, British Columbia, Canada
JAMA. 2018;319(18):1935-1936. doi:10.1001/jama.2018.3057

Because insurers typically will not pay for unproven stem cell interventions, patients seeking these services must purchase them out-of-pocket or use alternative funding mechanisms such as crowdfunding (ie, using online social networks to solicit donations).1 Crowdfunding for stem cell interventions raises questions concerning how their benefits and risks are depicted in crowdfunding campaigns. Given the increasing visibility and prevalence of health-related crowdfunding, it is important to understand how such interventions are described by campaigners to potential donors.

Methods

From September 2015 to February 2016, Turner and Knoepfler2 identified 351 US-based businesses engaging in direct-to-consumer (DTC) marketing of stem cell interventions. After receiving an exemption from ethics review from Simon Fraser University’s research ethics board, we searched from August 2017 to December 2017 for mentions of each of these businesses on the crowdfunding platforms GoFundMe and YouCaring. These websites are the 2 largest charitable crowdfunding platforms by money raised as measured by crowdfunding.com. An external search engine was used to verify results and identify additional campaigns on these platforms. For each campaign, we extracted data on the amount of funding requested and pledged, number of donors, and shares on Facebook and Twitter. We identified all statements about the perceived risks and efficacy of these interventions. Risk statements were evaluated as claiming medium/high or low/no risks compared with alternative treatments. Efficacy statements were classified as (1) definitive or certain about efficacy; (2) optimistic or hopeful about efficacy; (3) definitive and optimistic; or (4) no efficacy statements. Two authors (J.S. and L.T.) independently classified these statements, with the third author resolving disagreements.

Results

As of December 3, 2017, our search identified 408 campaigns (GoFundMe = 358; YouCaring = 50) seeking donations for stem cell interventions advertised by 50 individual businesses. These campaigns requested $7 439 308 and received pledges for $1 450 011 from 13 050 donors. The campaigns were shared 111 044 times on social media. Two campaigns were duplicated across platforms but shared separately on social media. Of the 408 campaigns, 178 (43.6%) made statements that were definitive or certain about the intervention’s efficacy, 124 (30.4%) made statements optimistic or hopeful about efficacy, 63 (15.4%) made statements of both kinds, and 43 (10.5%) did not make efficacy claims. All mentions of risks (n = 36) claimed the intervention had low/no risks compared with alternative treatments.

Discussion

Crowdfunding campaigns for unproven stem cell–based interventions underemphasize risks and exaggerate the efficacy of these interventions. 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. The situation parallels that of DTC marketing of unproven stem cell–based interventions, which has been shown to make hyperbolic claims about efficacy and minimize risks associated with their use.3-5

Although many publications examine DTC marketing by stem cell clinics, there is little research examining how individuals make sense of and act on such advertising claims. These findings suggest that individuals interested in purchasing unproven stem cell interventions may reflect DTC marketing messages in crowdfunding campaigns, thus potentially helping propagate them.

Although GoFundMe does not publish its total number of health-related campaigns, YouCaring reported (https://www.youcaring.com/fundraisers/medical-expenses) 62 739 campaigns on February 26, 2018; thus, campaigns for stem cell therapies represent a small percentage of their overall campaigns.

A limitation of the study is that only campaigns referencing 1 of the 351 businesses and on 2 crowdfunding platforms were included. Thus, these results likely underestimate the total number of crowdfunding campaigns for stem cell interventions advertised by these businesses.

Physicians providing care to patients crowdfunding for unproven stem cell–based interventions face difficult questions concerning how best to interact with these individuals.6 They should be aware of the potential for crowdfunding campaigns to help spread inaccurate information. The interests of both patients and the public suggest a role for clinicians in actively combating this misinformation by challenging problematic DTC marketing messages.

Section Editor: Jody W. Zylke, MD, Deputy Editor.
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Article Information

Accepted for Publication: March 1, 2018.

Corresponding Author: Jeremy Snyder, PhD, Faculty of Health Sciences, Simon Fraser University, 8888 University Dr, Burnaby, British Columbia V5A 1S6, Canada (jcs12@sfu.ca).

Author Contributions: Dr Snyder had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Snyder, Turner.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Snyder, Turner.

Critical revision of the manuscript for important intellectual content: All authors.

Obtained funding: Snyder.

Administrative, technical, or material support: Snyder.

Supervision: Snyder.

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.

Funding/Support: This research was supported through a Planning Grant from the Canadian Institutes of Health Research.

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: We thank Anika Vassell, BA (Simon Fraser University), for her assistance with data acquisition. She received compensation for her contribution.

References
1.
Snyder  J, Mathers  A, Crooks  VA.  Fund my treatment!  Soc Sci Med. 2016;169:27-30.PubMedGoogle ScholarCrossref
2.
Turner  L, Knoepfler  P.  Selling stem cells in the USA.  Cell Stem Cell. 2016;19(2):154-157.PubMedGoogle ScholarCrossref
3.
Sipp  D, Caulfield  T, Kaye  J,  et al.  Marketing of unproven stem cell–based interventions.  Sci Transl Med. 2017;9(397):eaag0426. PubMedGoogle ScholarCrossref
4.
Ogbogu  U, Rachul  C, Caulfield  T.  Reassessing direct-to-consumer portrayals of unproven stem cell therapies.  Regen Med. 2013;8(3):361-369.PubMedGoogle ScholarCrossref
5.
Lysaght  T, Lipworth  W, Hendl  T,  et al.  The deadly business of an unregulated global stem cell industry.  J Med Ethics. 2017;43(11):744-746.PubMedGoogle ScholarCrossref
6.
Young  MJ, Scheinberg  E.  The rise of crowdfunding for medical care: promises and perils.  JAMA. 2017;317(16):1623-1624.PubMedGoogle ScholarCrossref
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