Selling Stem Cell ‘Treatments’ as Research: Prospective Customer Perspectives from Crowdfunding Campaigns

Snyder, Jeremy; Turner, Leigh

doi:10.2217/rme-2018-0007

Cited by 24 publications

(27 citation statements)

References 35 publications

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“…Previous analyses of these campaigns have flagged the Burzynski clinic in Texas, the Hallwang Private Oncology Clinic in Germany, and providers selling the Gerson therapy as a cancer treatment as engaging in misleading marketing or selling products that may put patients at risk [15]. Moreover, studies of crowdfunding campaigns for alternative or unproven interventions have found that these campaigners often repeat and exaggerate misinformation about the safety and efficacy of these interventions, use markers of scientific legitimacy to support their campaigns, and are used to fund ineffective and potentially dangerous interventions [18][19][20][21]. This is not surprising given that these campaigns must reassure potential donors of the value of these interventions and that their money will be well spent.…”

Section: Introductionmentioning

confidence: 99%

Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

2020

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Background Complementary and alternative medicine (CAM) is increasingly being integrated into conventional medical care for cancer, used to counter the side effects of conventional cancer treatment, and offered as an alternative to conventional cancer care. Our aim is to gain a broader understanding of trends in CAM interventions for cancer and crowdfunding campaigns for these interventions. Methods GoFundMe campaigns fundraising for CAM were retrieved through a database of crowdfunding campaign data. Search terms were drawn from two National Institutes of Health lists of CAM cancer interventions and a previous study. Campaigns were excluded that did not match these or related search terms or were initiated outside of June 4th, 2018 to June 4th, 2019. Results 1,396 campaigns were identified from the US (n = 1,037, 73.9%), Canada (n = 165, 11.8%), and the UK (n = 107, 7.7%). Most common cancer types were breast (n = 344, 24.6%), colorectal (n = 131, 9.4%), and brain (n = 98, 7.0%). CAM interventions sought included supplements (n = 422, 30.2%), better nutrition (n = 293, 21.0%), high dose vitamin C (n = 276, 19.8%), naturopathy (n = 226, 16.2%), and cannabis products (n = 211, 15.1%). Mexico (n = 198, 41.9%), and the US (n = 169, 35.7%) were the most common treatment destinations. Conclusions These findings confirm active and ongoing interest in using crowdfunding platforms to finance CAM cancer interventions. They confirm previous findings that CAM users with cancer tend to have late stage cancers, cancers with high mortality rates, and specific diseases such as breast cancer. These findings can inform targeted responses where facilities engage in misleading marketing practices and the efficacy of interventions is unproven.

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Section: Introductionmentioning

confidence: 99%

Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

2020

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“…Similarly, a study of campaigns for unproven stem cell interventions found that 43.6 percent made definitive statements about the efficacy of these interventions, and none stated concerns with their potential risks . These campaigns also often falsely presented these interventions as part of clinical trials, as having support from the National Institutes of Health, and as having U.S. Food and Drug Administration (FDA) approval . Extremely optimistic and unsupported claims about the efficacy of stem cell interventions have been found elsewhere as well .…”

Section: The Case For Prohibitionmentioning

confidence: 99%

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Snyder¹,

Cohen²

2019

Hastings Center Report

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Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they “promote misinformation about vaccines” and for treatment at a German clinic offering unproven cancer treatments due to “the need to make sure people are equipped to make well‐informed decisions.” GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms.

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“…Patients are financially exploited and charged from around $3500 to a whopping $400,000, excluding travel expenses (Matthews & Iltis, 2015). Insurance companies mostly do not cover these and the costs from the subsequent side effects, therefore the money often comes from communities and crowd-funding campaigns with emotional narratives (Turner, 2010;Abou-El-Enein et al, 2016;Snyder & Turner, 2018;Snyder et al, 2018).…”

Section: The Growing Phenomenon Of Stem Cell Tourism Financial Explomentioning

confidence: 99%

An Overview of the Journey of Stem Cell Based Interventions from Bench to Bedside and the Growing Challenge of Unproven Interventions

Ghori¹,

Wahid²

2018

RHS

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Background: Current researches on Stem Cell Interventions (SCI) are mostly at various stages of clinical translation, and not ripe for immediate marketing. However, there is a global rise in patients opting for unproven SCI from dubious stem cell clinics.Objectives: To describes the usual stages of SCI’s clinical translation, factors fuelling the increase in unproven SCI and possible strategies for tackling the situation that have been mentioned in research articles and patient information sources. Conclusion: Stem cell tourism is on the rise. Direct to customer marketing of SCI through websites and social media using emotional narratives, patient testimonials and false claims of benefits, and unrealistically positive portrayal on social media are contributing factors. The situation may be addressed by treating stem cells as medical innovation and speeding up their clinical translation using modifications like expedited, conditional marketing approval. Medical societies can generate meta-analyses and updates for keeping clinicians informed about the latest therapies so they can guide patients. These along with organisations like ALSuntangled, can generate patient information booklets to help patients make informed decisions. Also, Patient Information Campaigns on social media and media’s coverage of increasing SCI related lawsuits can possibly help raise public awareness about unproven SCI.

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Selling Stem Cell ‘Treatments’ as Research: Prospective Customer Perspectives from Crowdfunding Campaigns

Abstract: The NIH, US FDA and others should be concerned about being co-opted to misrepresent the nature of these businesses' activities. Efforts are also needed to better inform those considering purchasing unproven stem cell interventions about their relationship to legitimate research.

Cited by 24 publications

References 35 publications

Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

An Overview of the Journey of Stem Cell Based Interventions from Bench to Bedside and the Growing Challenge of Unproven Interventions

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