Sometimes those treatments, although experimental and therefore not covered by insurance, are supported by some scientific evidence that they might prove beneficial.
That means that patients end up spending the money they raised through crowdfunding — amounts that can total in the tens or even hundreds of thousands of dollars — on dubious and sometimes dangerous treatments promoted by “cranks, charlatans, and conmen who prey on the vulnerable,” writes the author of the BMJ article, freelance journalist Melanie Newman.
In the article, Newman reports on the findings of a recent investigation by the Good Thinking Society, a British nonprofit that promotes evidence-based science. Its researchers identified 540-plus crowdfunding appeals from January 2012 through June 2018 that were aimed at raising money to send British patients to clinics that offer unproven or disproven alternative cancer therapies.
The therapies included such sham alternative cancer treatments as antineoplastons (substances originally extracted from urine) and Gerson therapy (which requires drinking massive amounts of juice drinks and undergoing coffee enemas).
Michael Marshall, the Good Thinking Society’s project director, told Newman that crowdfunding websites need to vet cancer appeals and “reject outright proposals that refer to specific drugs that have been discredited, extreme dietary regimes, intravenous vitamin C, alkaline therapy and other alternative treatments.”
“If a fundraiser is for treatment for a serious or life threatening condition such as cancer, it ought to be reviewed before it is sent live, especially if it contains terminology that raises red flags for quackery,” he added.
According to a GoFundMe spokesperson, the website is already “taking proactive steps” in the United States to figure out how to deal with the problem, Newman reports. “Ultimately, we’ll be monitoring content of this kind more closely in order to provide tailored advice,” the spokesperson told her.
JustGiving, however, is apparently taking no action. “We don’t believe we have the expertise to make a judgment on this,” its spokesperson told Newman.
A widespread phenomenon
University of Minnesota bioethicist Leigh Turner, who has published his own research on how crowdfunding campaigns are being used to fund unproven and potentially dangerous stem-cell therapies, was not surprised by any of the details in the BMJ article.
“Although I’ve looked at stem-cell treatments, it doesn’t take very much digging around to realize that people create GoFundMe and other crowdfunding pages for a whole variety” of questionable treatments, he said in an interview with MinnPost.
“It happens widely and in many countries,” he added.
The BMJ article did not emphasize, however, one of the more troubling aspects of this issue that Turner’s work has uncovered.
“Sometimes the companies themselves are quite involved in pushing the idea of creating the crowdfunding sites,” he explained. “It’s not always something that patients come up with on their own.”
It can be quite difficult for patients and their families and friends to distinguish between legitimate clinics that are offering experimental treatments with scientific-based promise and bogus clinics that that are peddling medical scams.
The confusion is understandable, for bogus clinics often mimic the language of legitimate researchers to make their treatments sound rooted in science. They may claim, for example, that the patient will be part of a “clinical trial.”
“If it’s being advertised as a clinical study, people should ask if the study has been reviewed by [an institutional] review board,” Turner stressed.
“There are a lot of other questions people can ask,” he added. “What exactly is the evidence, the science behind what is being promoted? Is it a reputable facility?”
If a doctor is involved, people can check to see if any professional disciplinary action has been taken against him or her.
Another important check is to make sure any data provided by the clinic on the treatment’s efficacy has been published in a peer-reviewed journal.
As Newman points out in her BMJ article, “alternative centres do not usually publish data on treatment efficacy but instead provide testimonials, in which patients often describe being given a short time to live before starting the treatment that ‘saved’ them.”
“What’s ultimately never conveyed is that the person died around the time you would have expected them to die, and there’s no reason to think that their lives were extended,” said Turner.
A need for hope
Turner understands why people donate to crowdfunding appeals for experimental treatments. “They want to be good family members, good friends,” he said.
And for some seriously ill patients — and their family and friends — “it seems that the most important thing that they need and want is a sense of hope,” he added.
But disreputable doctors and others prey on that need for hope, taking financial advantage of people when they are most vulnerable.
In the BMJ article, one man acknowledges that his wife’s alternative treatment for advanced colon cancer at a questionable clinic cost more than $500,000, much of which the family raised through crowdfunding appeals.
The man believes the treatment bought his wife “four or five months,” although, as Newman points out, those extra months may just have reflected the challenge of accurately predicting how long a terminally ill cancer patient has to live.
After his wife died, the treatments left the husband more than $90,000 in debt — money that he is trying to raise through an additional crowdfunding appeal.
He now wishes, he told Newman, that he had asked the clinic many more questions before going ahead.
FMI: You can read Newman’s article on the BMJ website.