Several studies have recently looked at how patients are using crowdfunding platforms to raise money for unproven, unscientific and sometimes dangerous treatments for serious illnesses.
The most recent of these studies, published earlier this month in The Lancet Oncology, focused on a particular type of crowdfunding campaign: ones raising money for cancer treatments involving the use of homeopathy.
The study’s Canada-based authors — Timothy Caulfield, a professor of health law and science policy at the University of Alberta, and Jeremy Snyder, a bioethicist at Simon Fraser University — say they focused on homeopathy because it’s “pure bunk.”
“When people are using crowdfunding campaigns to raise money for homeopathy, they are asking people to pay for pseudoscience,” they explain in an article they wrote about their findings for the digital magazine Policy Options.
Forgoing standard care
For the study, Caulfield and Snyder searched the crowdfunding site GoFundMe on June 8, 2018, for campaigns that included the words “cancer” and “homeopathy” or “homeopath.” They identified 220 such campaigns. Most (186) were in the United States, while the rest were in Canada (23), the United Kingdom (eight) and German, Ireland and Spain (one each).
The campaigns asked for $5.7 million and had been pledged $1.4 million, or about 24 percent of the total requested. More than 13,000 individuals had given to the campaigns.
Many of the patients were pursuing unproven cancer treatments in addition to homeopathy, including dietary changes, supplements, herbal remedies, vitamin C infusions, hyperbaric treatments, acupuncture, marijuana-based treatments, naturopathy, detoxification, traditional Chinese medicine and chelation therapy.
Thirty-eight percent of the cancer patients said on their GoFundMe page that they were using homeopathy to supplement or enhance conventional medical treatment, while another 31 percent said they could not afford — or were to ill to be given — conventional care. But a substantial proportion — 29 percent — said they were intentionally forgoing conventional care, primarily because of a fear of its effects.
“It is worth pausing here to consider how problematic this trend is,” write Caulfield and Snyder. “People are leveraging the good will of others to raise funds for an ineffective treatment that may cause cancer patients to avoid more effective and science-informed approaches or seek out palliative care. The money raised will be paid to practitioners who are — we would argue — making unethical and potentially illegal claims regarding the effectiveness of homeopathy.”
The researchers say they don’t blame the patients, who are undoubtedly frightened and wanting to try any treatment that might help. And, as Leigh Turner, a University of Minnesota bioethicist who has researched this topic, told MinnPost last year, clinics and practitioners offering bogus alternative treatments often encourage patients short of funds to pay for them through crowdfunding.
Spreading misinformation
Another problem with these crowdfunding campaigns is that they serve as megaphones for spreading medical misinformation.
“The existence of these crowdfunding campaigns seems likely to further entrench unproven and harmful alternative therapies in public discourse in addition to simply creating platforms that serve to spread awareness about these unproven therapies,” write Caulfield and Snyder.
“And this kind of messaging undoubtedly contributes to public misperceptions about the value of alternative cancer treatments,” they add.
As the researchers point out, a recent Harris Poll found that four in 10 Americans mistakenly believe alternative therapies can treat and cure cancer.
Unfortunately, research indicates otherwise. A study published last October reported that cancer patients who forgo conventional treatment for alternative therapies have poorer survival rates.
A need for disclaimers
Caulfield and Snyder say GoFundMe and other crowdfunding platforms need to take action to address the problems identified in their study.
“At the very least, there is a role for these platforms in countering misinformation spread through these campaigns,” they write. “While regulating this industry would be challenging (how would assessments of treatment efficacy be made, for example?), we should at least start considering ways forward, including the inclusion of disclaimers or the restriction of campaigns for unproven treatments where research like ours shows that they are actually causing harm.”
“Failure to take action makes these platforms complicit in these harms, including magnifying the spread of misinformation and serving as a financial conduit for those peddling bunk medical treatments,” they add.
FMI: You’ll find an abstract of the study on The Lancet Oncology’s website, but the full paper is behind a paywall. You can read Caulfield and Snyder’s commentary about the study on Policy Options’ website.
Among tragic deaths this one tugs at my heart. The photographer Garry Winogrand died of gallbladder cancer in a Gerson Clinic in Mexico, about a month and a half after diagnosis.
Oblivious to this fact, I attended a meeting once in space provided by Gerson Institute. Ms. Perry is correct to point out the dangers of alternative therapies. Thank you.