Disturbing news that it appears the market for dubious or outright fraudulent cures is now in friends asking friends to fund those treatments.
Two recent reports add to the literature on the use of crowdfunding platforms to support the pursuit of unproven treatments for serious health problems:
- One research team looked at the largest crowdfunding platform (GoFundMe) and three other well-trafficked sites that permit medical crowdfunding (YouCaring, CrowdRise, and Fund Razr). The search terms they used were related to (a) homeopathy or naturopathy for cancer, (b) hyperbaric oxygen therapy (HBOT) for brain injury, (c) stem cell therapy for brain injury, and (d) spinal cord injury, and (e) long-term antibiotic therapy for “chronic Lyme disease”—all of which the researchers considered poorly supported and/or potentially dangerous. The study found that from Nov 1, 2015 through December 11, 2017, 1,059 campaigns had sought a total of $27.25 million and raised nearly $6.8 million. GoFundMe hosted 98% of the campaigns, YouCaring had 2%, and the others had none that met the researchers’ inclusion criteria. [Vox F and others. Medical crowdfunding for scientifically unsupported or potentially dangerous treatments. JAMA 320:1705-1706, 2018]
- Another research team searched GoFundMe in June 2018 for campaigns that included the words “cancer” and variations on the word “homeopathy.” They found 220 unique campaigns with all but eight located in the United States and Canada. The campaigns, which mentioned 26 unproven interventions, requested nearly US $5.8 million and garnered pledges of more than $1.4 million. In addition to homeopathy, the most common methods were dietary changes such as juicing and organic foods (39% of campaigns). The other methods for which funding was sought by at least 10% of the campaigns were: (a) dietary supplements and herbal remedies, (b) vitamin C infusions, and (c) oxygen, ozone, and hyperbaric treatments. Unsubstantiated claims for the treatments sought were made in 29% of the campaigns. Among those seeking the treatments: (a) 38% wanted to try every available treatment and use it in addition to standard treatment; (b) 29% chose to forgo standard treatment because of fear of adverse effects or doubts about effectiveness, and (c) 31% could not pursue standard treatment for financial or medical reasons. At least 28% had died after their campaign began. [Snyder J, Caulfield T. Patients’ crowdfunding campaigns for alternative cancer treatments. Lancet Oncology. DOI:https://doi.org/10.1016/S1470-2045(18)30950-1, 2019]
Past issues of Consumer Health Digest have summarized the findings of studies of crowdfunding that involved cancer patients in the UK, claims that stem cell treatments were being offered through research studies, and claims that stem cell treatments had been proven effective.