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Crowdfunding sites may help fuel pseudoscience and bogus cancer cures, investigation finds

Patients fundraising for clinics offering coffee enemas and vitamin infusions through platforms which should “have a responsibility to ensure that they do not facilitate the exploitation”, charity says

Alex Matthews-King
Health Correspondent
Wednesday 12 September 2018 23:33 BST
Patients with out other treatment options are fundraising for placebos and drugs with unproven benefits
Patients with out other treatment options are fundraising for placebos and drugs with unproven benefits (Rex)

Crowdfunding websites could be helping to fund pseudoscience and drive patients to “quack” alternative medicine practitioners peddling cancer cures which aren’t backed up by evidence, according to an investigation in the British Medical Journal (BMJ).

Cancer patients fundraising for treatment with alternative therapies through UK websites have raised at least £8m since 2012, much of it spent at clinics based overseas.

The data was compiled by the Good Thinking Society, a scientific charity which wants the websites to do more to vet fundraisers for these sorts of treatment to prevent patients being exploited.

Crowdfunding has allowed people who couldn’t afford treatment on their own to access private treatments not available through the NHS, or join clinical trials for experimental drugs.

But it has also given a new avenue for clinics to sell treatments which make grand promises and the Good Thinking Society has proposed sites “reject outright proposals that refer to specific drugs that have been discredited, extreme dietary regimes, intravenous vitamin C, alkaline therapy and other alternative treatments”.

Michael Marshall, the charity’s project director, says: “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.”

“If these platforms want to continue to benefit from the goodwill of their users – and, indeed, to profit from the fees they charge each of their fundraisers – they have a responsibility to ensure that they do not facilitate the exploitation of vulnerable people.”

Some sites are already looking at how they can put protections in place and GoFundMe told the BMJ it is already “taking proactive steps” in the US to warn people fundraising for treatment and will roll this out globally soon.

But UK based crowdfunding group JustGiving, which reports more than 2,300 cancer-related appeals were set up in 2016, a seven fold increase on the year before, said: “We don’t believe we have the expertise to make this judgement.”

Patients who have used these sites to access alternative treatments say they can provide a sense of control to people, particularly if they have a terminal diagnosis and no other options.

Sarah Thorp, who set up a GoFundMe account to pay for her sister Andrea Kelly’s treatment at the Integrative Whole Health Clinic in Tijuana, Mexico, believes Andrea was helped as much by this sense control as by the treatments she received.

The clinic offers various alternative therapies, including coffee and flax seed enemas, vitamin and mineral infusions, and cryotherapy and the BMJ reports it claims up to 75 per cent success rates.

Andrea spent three weeks at the clinic at a cost of $21,000 (£16,000) and she died just over a year after she returned, but Ms Thorp told the BMJ: “It gave her hope at a point when we had none.”

The Good Thinking Society’s data shows that £4.7m of the £8m it identified was raised for treatment at the Hallwang Private Oncology Clinic, based in the Black Forest, Germany.

The clinics’s website shows that it offers “integrative medicine” which combines modern, evidence backed treatments, including chemotherapy and experimental immunotherapy alongside vitamin infusions into the patients’ blood and other treatments of less certain benefit.

While costs are high the clinic says this is because they are offering private treatment with cutting edge medicines and that for patients with terminal conditions even an improvement in quality of life can be valuable.

Professor of experimental cancer treatment at the University of Southampton, Christian Ottensmeier, said that he does not think Hallwang patients should be barred from fundraising for the clinic.

However the success rates and limitations of experimental treatments need to be carefully explained to patients, something the clinic said it does in all cases.

He also said patients could access the evidence backed portion of their treatment in the UK, telling the BMJ: “For a much smaller sum you can buy the same immunotherapy drugs and have them administered in the UK.”

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