It’s become a heartbreakingly common sight on the internet: People using crowdfunding sites to raise money for their expensive health care, including cancer treatment. But a new report published this week in the BMJ suggests that desperate people are often using this money to pursue dubious, possibly dangerous treatments from unscrupulous charlatans.
The report, written by freelance UK journalist Melanie Newman, details an analysis conducted by the Good Thinking Society, a nonprofit in the UK that advocates for scientific scepticism. And the analysis itself is based on data from two major crowdfunding sites used by UK residents, GoFundMe and JustGiving.
According to the analysis, around £8 million ($14.6 million) has been raised for alternative cancer treatments, meaning those not covered by the country’s public health system, since 2012.
The majority of this money was used for treatments provided outside of the UK, via privately funded clinics in countries including the US, Mexico and Thailand. Many of these clinics, as well as the doctors leading them, have been criticised and even officially punished for their medical claims and activities.
In Texas, for example, Polish-trained doctor Stanislaw Burzynski has run the Burzynski Clinic for decades, claiming that his experimental antineoplastons can treat even the most terminal of cancer cases.
But antineoplastons have never been approved by the US Food and Drug Administration, nor has any randomised clinical trial ever shown them to be effective. And both the FDA as well as the Texas Medical Board have tried to censure Burzynski for making misleading claims about his clinic’s success rate.
Last March, the Texas Medical Board sanctioned Burzynski for lying to his patients about the risks of his treatments, as well as for allowing non-licensed staff members to pose as doctors.
But despite being placed on five years probation, Burzynski is still allowed to practice medicine, and the heavy fines originally proposed — $US380,000 ($535,064) — were eventually lowered to only $US60,000 ($84,484).
According to the report, hundreds of thousands of pounds have been raised for people to visit the Burzynski Clinic. Elsewhere, others have detailed the many patients (and their families) who went to Burzynski seeking a miracle, but came home with empty wallets and died soon after.
“We are concerned that so many UK patients are raising huge sums for treatments which are not evidence based and which in some cases may even do them harm,” Michael Mitchell, the project director of Good Thinking Society, told the BMJ.
It isn’t just a problem in the UK, either. Other research based in the US and Canada has found that crowdfunding sites are raising money for people to receive care from unregulated stem cell clinics in the US.
GoFundMe told the BMJ it would be “taking proactive steps” to better inform its users about these clinics, first in the US and eventually globally over the next few months. But JustGiving declined to take action.
“We don’t believe we have the expertise to make a judgement on this,” the company told the BMJ.
It’s understandable, of course, why people dealing with terminal cancer might be willing to pursue any unorthodox treatment that purports to help them when other treatments can’t.
But crowdfunding sites, Mitchell said, have an obligation to protect their users and the donating public from quacks who take advantage of this desperation. As do media outlets that have promoted these crowdfunding drives as feel-good human interest stories in the past.
“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,” Mitchell told the BMJ.
Examples of these snake oil therapies include intravenous vitamin C therapy, antineoplastons, extreme diets and coffee enemas.