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Table 1.  
Search Terms Used on Each Crowdfunding Site for Each Treatment Area Investigated
Search Terms Used on Each Crowdfunding Site for Each Treatment Area Investigated
Table 2.  
Funding Sought and Received for Medical Crowdfunding Campaigns for 5 Scientifically Unsupported Treatments in the United States and Canada
Funding Sought and Received for Medical Crowdfunding Campaigns for 5 Scientifically Unsupported Treatments in the United States and Canada
1.
Woolley  S. American health care tragedies are taking over crowdfunding. Bloomberg News. June 12, 2017. https://www.bloomberg.com/news/articles/2017-06-12/america-s-health-care-crisis-is-a-gold-mine-for-crowdfunding. Accessed April 4, 2018.
2.
Federspil  G, Presotto  F, Vettor  R.  A critical overview of homeopathy.  Ann Intern Med. 2003;139(8):W75. doi:10.7326/0003-4819-139-8-200310210-00026-w3PubMedGoogle ScholarCrossref
3.
Crawford  C, Teo  L, Yang  E, Isbister  C, Berry  K.  Is hyperbaric oxygen therapy effective for traumatic brain injury? a rapid evidence assessment of the literature and recommendations for the field.  J Head Trauma Rehabil. 2017;32(3):E27-E37. doi:10.1097/HTR.0000000000000256PubMedGoogle ScholarCrossref
4.
Turner  L.  ClinicalTrials.gov, stem cells and “pay-to-participate” clinical studies.  Regen Med. 2017;12(6):705-719. doi:10.2217/rme-2017-0015PubMedGoogle ScholarCrossref
5.
Berende  A, ter Hofstede  HJM, Vos  FJ,  et al.  Randomized trial of longer-term therapy for symptoms attributed to lyme disease.  N Engl J Med. 2016;374(13):1209-1220. doi:10.1056/NEJMoa1505425PubMedGoogle ScholarCrossref
6.
Snyder  J, Turner  L, Crooks  VA.  Crowdfunding for unproven stem cell-based interventions.  JAMA. 2018;319(18):1935-1936. doi:10.1001/jama.2018.3057PubMedGoogle ScholarCrossref
Research Letter
October 23/30, 2018

Medical Crowdfunding for Scientifically Unsupported or Potentially Dangerous Treatments

Author Affiliations
  • 1Brain Injury Rehabilitation, Shepherd Center, Atlanta, Georgia
  • 2Division of Medical Ethics, New York University School of Medicine, New York
JAMA. 2018;320(16):1705-1706. doi:10.1001/jama.2018.10264

Medical crowdfunding involves using social media platforms to appeal for help in paying for medical care. The largest medical crowdfunding platform, GoFundMe, reported that all campaigns raised $3 billion by 2016, an increase from $1 billion in 2015.1 Although medical crowdfunding campaigns can fill insurance gaps, they can also raise money for scientifically unsupported, ineffective, or potentially dangerous treatments. We quantified crowdfunding activity for 5 such treatments.

Methods

No rankings of medical crowdfunding sites exist. We selected the largest crowdfunding platform (GoFundMe) and 3 other well-trafficked sites that permitted medical crowdfunding (YouCaring, CrowdRise, and FundRazr). We chose 5 treatments that yielded numerous results during preliminary searches of a list of poorly supported or potentially dangerous treatments. Using the native search engines, we systematically searched for a set of terms related to the 5 treatments: homeopathy or naturopathy for cancer, hyperbaric oxygen therapy (HBOT) for brain injury, stem cell therapy for brain injury and spinal cord injury, and long-term antibiotic therapy for “chronic Lyme disease” (Table 1). Homeopathic treatments for cancer2 and HBOT3 for brain injury are ineffective. Stem cell therapy for central nervous system injury4 and long-term antibiotic therapy for chronic Lyme disease can result in serious adverse events.5

From November 14 to December 11, 2017, we identified all existing campaigns posted since November 1, 2015, in the United States and Canada by searching for terms related to each treatment. Only campaigns with evidence that the fundraisers intended to direct all or some of the raised funds to the targeted treatment for an individual were included. The number of campaigns and the funds sought and raised for each treatment were tabulated. We collected any specific practitioner names and treatment destinations to contextualize our analysis.

Results

Of the 1636 campaigns identified, 1059 mentioned intention to direct funds to 1 of the 5 treatments, seeking a total of $27 249 487.99 (Table 2). No campaigns that met our inclusion criteria were found on CrowdRise or FundRazr; 1038 (98%) were found on GoFundMe. Included campaigns raised a total of $6 779 700.01 (24.9% of funds sought) by the end of data collection. The most money was raised by the 474 campaigns collecting funds for homeopathic or naturopathic cancer treatments at $3 464 871. The 190 campaigns seeking funding to access HBOT for brain injury raised $785 421.92 of $4 012 408.33 sought. Stem cell therapies for brain and spinal cord injury generated 188 and 93 campaigns, respectively, raising $1 249 597.42 of $5 913 905.33 sought for brain injuries and $590 446 of $2 578 990 for spinal cord injuries. One hundred fourteen campaigns raised $689 363.67 of a desired $2 162 221.33 to fund long-term antibiotic therapy for chronic Lyme Disease.

We identified 9 named practitioners and 8 countries that campaigners intended to visit, including clinics in Germany and Mexico for homeopathic or naturopathic cancer treatments, a New Orleans clinic offering HBOT for brain injury, and clinics in the United States, Panama, Thailand, India, China, and Mexico for stem cell therapies.

Discussion

More than 1000 medical crowdfunding campaigns for 5 treatments that are unsupported by evidence or potentially unsafe raised more than $6.7 million. Another study found that 408 campaigns raised more than $1 million for unproven stem cell interventions.6 The present study included a broader set of treatments and suggests that medical crowdfunding is being used for multiple problematic treatments. These results reveal that a wide scope of campaigns for unsupported, ineffective, or potentially dangerous treatments are moderately successful in obtaining funding. Assuming that the funds raised are spent to pay for these treatments, donors indirectly contributed millions of dollars to practitioners to deliver dubious, possibly unsafe care.

This study has limitations. Only 5 treatments and 4 platforms were analyzed. These were selected because of clinical experience and visibility. Whether the results generalize is unknown. Native search engines vary in quality; an external search engine may have yielded more results. Despite expressed intent, campaigners may not have used funds on specified treatments.

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

Accepted for Publication: June 26, 2018.

Corresponding Author: Ford Vox, MD, Brain Injury Rehabilitation, Shepherd Center, 2020 Peachtree Rd NW, Atlanta, GA 30309 (ford.vox@shepherd.org).

Author Contributions: Dr Vox 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: Vox, Folkers, Caplan.

Acquisition, analysis, or interpretation of data: Vox, Folkers, Turi.

Drafting of the manuscript: All authors.

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

Statistical analysis: Vox, Folkers, Turi.

Administrative, technical, or material support: Folkers.

Supervision: Vox, Caplan.

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

References
1.
Woolley  S. American health care tragedies are taking over crowdfunding. Bloomberg News. June 12, 2017. https://www.bloomberg.com/news/articles/2017-06-12/america-s-health-care-crisis-is-a-gold-mine-for-crowdfunding. Accessed April 4, 2018.
2.
Federspil  G, Presotto  F, Vettor  R.  A critical overview of homeopathy.  Ann Intern Med. 2003;139(8):W75. doi:10.7326/0003-4819-139-8-200310210-00026-w3PubMedGoogle ScholarCrossref
3.
Crawford  C, Teo  L, Yang  E, Isbister  C, Berry  K.  Is hyperbaric oxygen therapy effective for traumatic brain injury? a rapid evidence assessment of the literature and recommendations for the field.  J Head Trauma Rehabil. 2017;32(3):E27-E37. doi:10.1097/HTR.0000000000000256PubMedGoogle ScholarCrossref
4.
Turner  L.  ClinicalTrials.gov, stem cells and “pay-to-participate” clinical studies.  Regen Med. 2017;12(6):705-719. doi:10.2217/rme-2017-0015PubMedGoogle ScholarCrossref
5.
Berende  A, ter Hofstede  HJM, Vos  FJ,  et al.  Randomized trial of longer-term therapy for symptoms attributed to lyme disease.  N Engl J Med. 2016;374(13):1209-1220. doi:10.1056/NEJMoa1505425PubMedGoogle ScholarCrossref
6.
Snyder  J, Turner  L, Crooks  VA.  Crowdfunding for unproven stem cell-based interventions.  JAMA. 2018;319(18):1935-1936. doi:10.1001/jama.2018.3057PubMedGoogle ScholarCrossref
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