The 47-year-old mother from Tennessee had chosen to forgo traditional cancer treatments for her late stage breast cancer and rely on natural therapies instead.
“I am a cancer patient, NOT a chemo patient,” she posted on the online fundraising site GoFundMe. “Chemo is a serious poison” that destroys bones, kidneys and livers, and “decimates” the immune system, she said. So she is trying to raise money for homeopathic and other natural therapies, including juicing organic carrots.
It’s an example of the rapidly growing practice of people using crowdfunding for alternative cancer treatments — a phenomenon that’s helping finance and promote scientifically baseless therapies while raising false hopes for desperate people, according to the authors of a study appearing in this week’s issue of The Lancet.
Bioethicist Jeremy Snyder of Simon Fraser University and the University of Alberta’s Timothy Caulfield searched GoFundMe for medical crowdfunding campaigns that included the words “cancer” and various versions of “homeopathy.” As of June 2018, they identified 220 campaigns, the bulk of them in the U.S., but also 23 in Canada.
For each campaign, they recorded information about the amount of money requested and pledged, the number of donors, the number of Facebook shares, the person’s rationale for seeking alternative treatment and, to the best of their ability, whether the person had died. (They also searched obituary records).
In all, 13,621 donors pledged US$1,413,482 (24 per cent of the US$5.8 million requested.)
The campaigns were shared on Facebook 112,353 times.
“Campaign recipients were a very ill group,” Snyder and Caulfield wrote in The Lancet, “as evidenced by the fact that at least 62 (28 percent) had died following the start of their campaigns.”
In addition to homeopathic treatments, which involve massively diluted substances — so super-diluted scientists say the “remedies” are virtually water — “campaigners sought a range of other unproven cancer treatments,” the authors said, including vitamin C infusions, oxygen, ozone and hyperbaric treatments, cleanses and detoxification, energy healing, alkaline water treatments, mistletoe, massage, magnets and chelation therapy.
Roughly a third of campaigns made unsubstantiated claims about the effects of treatments, such as, “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.”
“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,” read another.
“Campaigns driven by any of these rationales have the potential to exacerbate problems associated with the use of alternative cancer treatments, including wasting resources and raising false hopes for better results,” Snyder and Caulfield wrote.
“Each of these GoFundMe campaigns is a little human interest story. So they can be very persuasive, particularly if you are a cancer patient looking for answers,” said Caulfield, a professor of health law and policy at the University of Alberta.
“It really is a worse case scenario. These are often desperate people leveraging the good will of others to raise money for something that doesn’t work, which, in turn, helps to support a harmful industry based on pseudoscience.”
The results likely underestimate the scope of the problem, because their search was limited to campaigns for homeopathic treatments of cancer — “the low-hanging fruit,” Snyder said, the worst of the worst alternative treatments for a very serious medical condition.
“These are completely unproven treatments,” he said. “There’s no physical explanation for how (homeopathy) could possibly work. It’s a placeholder for clearly garbage treatments.”
Among the 220 campaigners, 38 per cent were seeking alternative treatments as a complementary therapy to traditional chemotherapy, radiation or surgery.
“The typical rationale was, ‘I want to try everything,’ ” Snyder said. ” ‘I want to make sure I’ve attempted everything I can possibly do to try to cure it.’ ”
While they may be wasting their money, as an ethicist those aren’t the people who concern him most.
Most concerning were the 29 per cent who were eschewing traditional treatments entirely. “You get language like, ‘chemotherapy is poison. I had an uncle who was fine and then he went to the hospital and suffered and died soon after.’ ”
“Crowdfunding was enabling them to buy all these bunk treatments instead.”
A 2017 study of U.S. cancer patients found that patients opting solely for alternative medicines were more likely to die.
In the GoFundMe study, others had been told there was nothing more that proven medicine could do for them. They had a terminal diagnosis but didn’t want to “give up.”
“These were the sickest people in a lot of cases — they were going to keep trying various alternative treatments in the hope that might prove a miracle,” Snyder said.
He sympathizes. “But these are people who might have been better served by palliative care, or coming to grips with their diagnosis.”
Without crowdfunding platforms like GoFundMe, money for bogus therapies not covered by health insurance couldn’t be raised, Snyder said.
“These are very desperate people, these are very sick people. What really needs to happen is GoFundMe needs to get involved. They know this is happening.” Snyder published a paper earlier this year on crowdfunding for unproven stem cell therapies.
“They (GoFundMe) can’t continue to take the position that it is up to people to decide how they spend their money, because they are the ones who are enabling this to happen.”
In a statement sent to the Post, GoFundMe said its goal is to “provide the most effective, supportive and safest place for people to fundraise for causes and needs that are important to them.
“That said, GoFundMe is an open platform and ultimately it is up to the GoFundMe community to decide which campaigns to donate to,” the company said. “We always encourage people to fully research whatever it is they are raising money for and to be absolutely transparent on their GoFundMe page, so donors can make an informed decision on what they’re donating to.”
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