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It has become a heartbreaking sight on the Internet: people using crowdfunding sites to raise money for their expensive health care, including cancer treatment. But a new report released Wednesday in the BMJ suggests that desperate people often use this money to pursue dubious, even dangerous, treatment by unscrupulous charlatans.
The report, written by British freelance journalist Melanie Newman, details an analysis by the Good Thinking Society, a British non-profit organization that advocates for scientific skepticism. And the analysis itself relies on data from two leading crowdfunding sites used by UK residents, GoFundMe and JustGiving. According to the analysis, approximately £ 8 million ($ 10.4 million) was collected for alternative cancer treatments, that is, those not covered by the public health system of the United States. country since 2012.
Most of this money has been used for treatment outside the UK, through privately funded clinics in countries such as the United States, Mexico and Thailand. Many of these clinics, as well as the physicians who lead them, have been criticized and even officially sanctioned for their medical activities and claims.
In Texas, for example, a Polish-trained physician, Stanislaw Burzynski, has been running the Burzynski Clinic for decades, claiming that his experimental antineoplastons can treat even the most terminal cancer cases. But antineoplastons have never been approved by the Food and Drug Administration, and no randomized clinical trial has ever shown them to be effective. Both the FDA and the Texas Medical Board have tried to censor Burzynski for making misleading statements about his clinic's success rate.
Last March, the Texas Medical Commission fined Burzynski for lying to his patients about the risks of his treatment, as well as for allowing unlicensed staff to report as doctors. But despite a five-year probationary period, Burzynski is still allowed to practice medicine, and the hefty fines originally proposed – $ 380,000 – have finally been lowered to just $ 60,000.
According to the report, hundreds of thousands of books have been collected for people to visit the Burzynski clinic. Elsewhere, others detailed the many patients (and their families) who went to Burzynski in search of a miracle, but returned home with empty wallets and died shortly thereafter.
"We are concerned that so many UK patients are raising huge sums of money for treatments that are not evidence-based and in some cases even harmful," said Michael Mitchell, Good Thinking Society project director. .
It's not just a problem in the UK. In the United States and Canada, other research has found that crowdfunding sites raise money for people to receive care from unregulated stem cell clinics in the United States.
In the United States, GoFundMe said it would "take proactive steps" to better inform its users about these clinics, first in the United States and possibly worldwide in the coming months. But JustGiving refused to take action.
"We do not think we have the expertise to make a judgment on this," the company told BMJ.
Of course, it is understandable that people with terminal cancer are willing to follow an unorthodox treatment that would help them when other treatments can not. But crowdfunding sites, said Mitchell, have an obligation to protect their users and the public from donors against quacks who profit from this desperation. Just like the media that promoted these crowdfunding campaigns as stories of human interest.
"If a fundraising event is to treat a serious or life-threatening illness such as cancer, it must be reviewed before it is sent live, especially if it contains terminology that triggers a quack signal," said Mitchell. BMJ.
Intravenous vitamin C treatments, antineoplastons, extreme diets and coffee enemas are examples.
[The BMJ]Source link
