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Figures published by BMJ show today how crowdfunding for alternative therapies for patients with terminal cancer has exploded in recent years. But there are fears that huge sums will be collected for treatments that are unsupported by evidence and, in some cases, even harmful.
As a journalist, independent journalist Melanie Newman is now calling for crowdfunding sites to ensure that patients and their donors are not exploited.
The figures collected by the Good Thinking Society, a charitable organization that encourages scientific reflection, show that since 2012, calls to UK crowdfunding sites for cancer treatment with an alternative health element have raised 8 million people. pounds (9 million euros). Most of it was for treatment abroad.
JustGiving figures show that more than 2,300 cancer-related calls in the UK were launched on its site in 2016, seven times more than in 2015.
While the phenomenon has allowed less-well-off patients to gain access to expensive, non-NHS-funded, but cost-effective treatment, many fear it will open up a new source of revenue for cranks, quacks and crooks. . who take on the vulnerable.
The company's project director, Michael Marshall, said: "We are concerned that so many British patients are raising huge sums of money for treatments that are not evidence-based and in some cases may even harm them. . "
Good Thinking now wants crowdfunding sites to review cancer appeals and "reject proposals for discredited specific drugs, extreme diets, intravenous vitamin C, alkaline therapy, and other alternative treatments." ".
"If these platforms want to continue to benefit from the goodwill of their users and, in fact, benefit from the fees charged at each of their fundraisers, they have the responsibility to ensure that they do not facilitate exploitation of vulnerable people ". said Marshall.
Edzard Ernst, professor of complementary medicine at Exeter University, supports this initiative, noting that crowdfunding organizations are already rejecting appeals involving violence or illegal activities, such as terrorist attacks.
GoFundMe, the platform that figures prominently in the Good Thinking data set, said it was already taking proactive steps in the US to ensure that users of its site are better informed and will do the same in the coming months.
JustGiving says BMJ"We do not think we have the expertise to judge that."
On the other hand, some argue that the very process of seeking alternative therapies can have a positive effect. Sarah Thorp, who created a GoFundMe account to pay for her sister Andrea Kelly's treatment at Integrative Whole Health Clinic in Tijuana, Mexico, believes that Andrea has been helped as much by the feeling of control as by treatments that she has received.
Andrea spent three weeks at the clinic costing $ 21,000 (£ 16,000, £ 18,000) and died a little over a year after her return.
The largest sums in the Good Thinking dataset, representing approximately 4.7 million books out of the 8 million pounds identified, were raised for trips to the private Hallwang Oncology Clinic, in the UK. Black Forest south of Germany.
However, the clinic claims that some people used Hallwang's name to fundraise, but did not proceed with treatment and in some cases did so without ever contacting the clinic.
Some health professionals, including Professor Christian Ottensmeier of the University of Southampton, do not think that patients should be banned from visiting these clinics, but they feel that it is essential to discuss with the patient's chances, risks and costs.
Others, however, like Patricia Peat, a former oncology nurse who advised people to go to Hallwang after visiting the clinic herself, say that she has now stopped recommending it to her patients. customers.
Hallwang argues that it never gives guarantees to patients and still provides detailed information on its alternative treatment strategies, which it says are at the forefront of technology.
Finally, Michael Marshall also highlights the role of the media, whose reporting on people with cancer often drives donors to crowdfunding sites and encourages others to seek the same treatment.
"These reports may look like stories of human interest, but they rarely highlight the dubious and pseudoscientific character of some of the treatments at stake or the number of successful cases that resulted in a tragedy," he says. . "If the media wants to report stories of medical fundraising, they should seek advice from qualified medical experts."
Explore more:
According to a study, crowdfund of patients discouraged for false medical care
More information:
Feature: Does cancer fundraising fuel charlatanism? BMJ (2018). www.bmj.com/content/362/bmj.k3829
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