Perspectives

Digital Patients’ crowdfunding campaigns for alternative treatments

Faculty of Health Sciences, It is estimated that approximately half of all patients recipient had died. For campaigns that had not recorded Simon Fraser University, with cancer use complementary and the recipient’s death, we searched obituary records and Burnaby, BC, Canada (JS); Faculty of Law, University of Alberta, (CAM), and its popularity is on the rise. Patients with recorded when there was adequate personal information Edmonton, Alberta, Canada (TC) cancer seek these alternative therapies for a variety of for the recipient. [email protected] reasons including providing a sense of control, helping We found three categories of rationales for seeking The authors declare no with pain, and coping with treatment. But there are CAM cancer treatments: individuals who want to try every competing interests clear risks associated with this trend, including concerns available treatment and who are using it to complement For more on how many cancer that desperate patients can be exploited or that the patients use CAM see traditional treatment; individuals who chose to forgo Integr Cancer Ther 2012; CAM treatment could be harmful, or result in an adverse traditional treatment because of fear of its effects or 11: 187–203 interaction with conventional therapy. Indeed, a 2018 skepticism about its activity; and individuals who cannot For more on why cancer study found that use of CAM by patients with cancer was pursue traditional treatment for financial or medical patients use CAM see associated with a reduced chance of survival. reasons but do not wish to forgo treatment. https://www.cancerresearchuk. org/about-cancer/cancer-in- Although the activity of various CAM therapies 186 (85%) of 220 campaigners were located in the general/treatment/ continues to be debated in the academic literature, there USA, 23 (10%) in Canada, eight (4%) in the UK, and one complementary-alternative- is a broad consensus in the scientific community that each in Germany, Ireland, and Spain. They requested therapies/about/why-used therapies such as homeopathy are ineffective. Research US$5 795 602, and were pledged $1 413 482 (24% of the For more on the impact of CAM on patients’ survival see has consistently shown that CAM therapies perform no total requested) by 13 621 donors. These campaigns were J Natl Cancer Inst 2018; 1: 110 better than placebo. shared on Facebook 112 353 times. Campaign recipients For more on the evidence on the For patients who are unable to pay for alternative were a very ill group, as evidenced by the fact that at least effectiveness of homeopathy cancer treatments out of pocket, medical crowdfunding 62 (28%) had died following the start of their campaigns. for treating health conditions see https://www.nhmrc.gov.au/_ enables campaigners to harness social networks to pool In addition to self-described homeopathic treatments, files_nhmrc/publications/ resources for health-related care. This rapidly growing campaigners sought a range of other unproven cancer attachments/cam02a_ practice is dominated by the online platform GoFundMe, treatments, including dietary changes such as juicing and information_paper.pdf which hosts more than 80% of the global market for organic foods (n=85), supplements, vitamins, and herbal For more the role of crowdfunding to fund CAM in personal crowdfunding and has raised more than remedies (n=68), vitamin C infusions (n=30), oxygen, cancer see Lancet Oncol 2017; US$5 billion from more than 50 million donors. There ozone, and hyperbaric treatments (n=24), acupuncture 18: 269 is evidence that crowdfunding is used to fund unproven (n=20), cannabis-based treatments including cannabidiol For more on GoFundMe market stem-cell treatments, but the funding of alternative (n=18), naturopathy (n=18), immunotherapy for share see https://www. treatments, including those for cancer, has not been fastcompany.com/40554199/ unapproved settings (n=17), cleanses and detoxification gofundme-keeps-gobbling-up- examined. As a result, we sought to understand how and (n=16), energy healing (n=13), hyperthermic treatments competitors-says-its-very-good- why crowdfunding is used to fund unproven CAM cancer (n=10), traditional Chinese medicine (n=9), pH balancing for-the-market treatments. and alkaline water treatments (n=9), mistletoe (n=8), For more on Unproven Stem On June 8, 2018, we searched the crowdfunding Ayurveda, yoga, and meditation (n=8), light, ultraviolet, Cell–Based Interventions see JAMA 2018; 8; 319: 1935–6 platform GoFundMe for medical crowdfunding and infrared treatments (n=8), chiropractic treatments For more on palliative care at campaigns that included the words “cancer” and (n=6), lymphatic massage and drainage (n=6), massage the end of life see “homeopathic”, “homeopath”, or “homeopathy” using (n=6), magnets (n=5), chelation therapy (n=5), essential Health (London) 2015; the platform’s search engine. We used variations of oils (n=4), auto­hemotherapy (n=3), indigenous medi­ 19: 263–79 “homeopathy” to identify campaigns for clearly unproven cines (n=3), low-dose chemotherapy (n=3), osteo­pathy cancer treatments. This process identified 220 unique (n=3), and hypothermic treatments (n=2). campaigns. 83 (38%) individuals used alternative treatments as For each campaign, we recorded information about complementary to traditional treatment. They wanted the amount of money requested and pledged, number to try “every treatment method available”, often of donors, number of Facebook shares, location of seeing homeopathic treatments as something that the campaign host, date the campaign was initiated, would “enhance” traditional treatments. 63 (29%) of recipient’s underlying medical condition, rationale for 220 campaigns were for individuals who chose to forgo seeking CAM cancer treatment, alternative treatments traditional treatment because of a fear of its effects or (including those other than homeopathy) sought, skepticism about activity. They often felt alternative activity claims made, and information about whether the treatments were a more natural alternative to “synthetic

28 www.thelancet.com/oncology Vol 20 January 2019 Perspectives

medicines”. Individuals who could not pursue traditional treatment for financial or medical reasons comprised 69 (31%) of the campaigns. A characteristic example of one of these campaigns included one recipient who saw alternative treatment as their “last and only hope”. Four (2%) of campaigns included two rationales and nine (4%) gave no rationale. 63 (29%) campaigns made unsubstantiated, positive claims about the activity of these treatments. These included personal anecdotes (“Thus far, he’s been immersed in cancer-fighting foods, supplements, herbs, etc... we believe this is why the tumour growth has slowed, and not spread”) and sweeping activity statements (“Homeopathic/naturopathic medicine has been proven to have outstanding healing results and a lot of patients are still able to live their lives because of it.”). Only two (1%) campaigns acknowledged the uncertain activity of these treatments. These findings show that crowdfunding cam­ paigners seek funding for alterative cancer treatments to complement proven treatments, as an alternative to proven treatments, and because proven treatments Magictorch/Getty Images are not available. Campaigns driven by any of these rationales have the potential to exacerbate problems treatments, these statements might be particularly associated with the use of alternative cancer treatments, compelling because they come in the form of personal including wasting resources and raising false hopes for narratives and often from trusted, familiar sources. This better health. Importantly, through crowdfunding and is a concern that has been seen in crowdfunding for the power of social networks, these problems are spread unproven stem-cell treatments, for which the need to to larger communities. This funding source also gives convince potential donors that their money will be well patients who have been told that continued care with spent might encourage exaggerated claims of activity. traditional methods is futile the opportunity to preserve Even if activity is not explicitly addressed, the fact that the hopes of themselves and their social networks that patients are seeking funds might be interpreted as some unproven method of treatment will reverse their an implicit endorsement of the value and desirability cancer. As such, crowdfunding might make it more of these treatments, and these campaigns serve to difficult to acknowledge a terminal diagnosis and accept normalise CAM treatment of cancer in the public. palliative care options insofar as palliative care is viewed Because our search was limited to crowdfunding by many patients as giving up on treatment. campaigns for self-described homeopathic treatment Crowdfunding for alternative cancer treatments raises of cancer, these results only reveal a sample of the full distinct ethical concerns as well. The second rationale range of campaigns for unproven, alternative cancer for seeking alternative treatments raises the specific treatments. In light of these findings, there should concern that crowdfunding is enabling individuals be concern that crowdfunding has the potential to to forgo proven cancer treatments by financing exacerbate existing and create new problems within the unproven alternatives. Whereas individuals might prefer market for alternative cancer treatments. Oncologists alternatives to proven treatments even without the and other medical practitioners should be prepared availability of crowdfunding, limits on insurance coverage to discuss these concerns with their patients. Cancer have made seeking alternative treatments prohibitively research agencies and patient support groups could expensive for some; by crowdfunding these treatments, raise the profile of these issues with public statements of abandoning traditional treatments becomes more concern around the role of crowdfunding in encouraging feasible. As noted, this can have a substantial negative the use of unproven cancer treatments. Partnerships with effect on survival rates. crowdfunding platforms should also be sought to combat Crowdfunding can also enable the spread of mis­ the worst forms of harm and misinformation transmitted information about the activity of CAM cancer treatments. via these campaigns. Although only 63 (29%) of campaigns made positive statements about the activity of alternative cancer Jeremy Snyder, Timothy Caulfield

www.thelancet.com/oncology Vol 20 January 2019 29