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The hidden side of clinical trials

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'The Ugly Truth'

by Tracey Brown, director of Sense About Science

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Steer clear of false cancer cures

Caroline Finucane is Editor of new content at NHS Choices

A couple of weeks ago I was asked to write a piece for NHS Choices on a subject that, unbeknownst to me, was creating quite a stir among the medical community.

I set out to write a straight piece on the benefits of photodynamic therapy (PDT), but soon realised it would have to be more of a warning to the public.
The warning was about unproven, unlicensed cancer treatments – so-called ‘advanced versions’ of PDT – that were being marketed as a cure for cancer and particularly late-stage cancer. A group of scientists had been tirelessly campaigning against them for years, desperate to inform the public about clinics they believed were being run by misguided or fraudulent people. 
At the forefront of the campaign was David Longman, Director of the charity Killing Cancer, whose determination and frustration couldn’t be ignored. He was seeing too many gravely ill patients being persuaded to invest everything in these false "miracle cures", and his attempts to dissuade them were falling on deaf ears. His warnings came partly from personal experience, as one of these alternative therapies had failed to help his daughter eight years ago (whose tumour actually grew during the course of the treatments), just as a similar therapy did nothing to help Olivia Downie earlier this year, and actually caused more suffering.  
The therapies I’m talking about – "next-generation PDT" (NGPDT) and "sonodynamic therapy" (SDT) – are being marketed as new-and-improved versions of PDT. As it stands, conventional PDT is an approved, effective treatment for certain cancers, with potential to do lots more – but it cannot perform miracles. Sadly, there’s no evidence that any form of PDT – not even these supposedly cutting-edge versions – can cure cancers that have spread beyond being a single, solid mass. 
We don’t just need to consider the outcomes of tragic stories like Olivia Downie’s to be suspicious of SDT and NGPDT. If they really do treat late-stage cancer, why don’t the medics promoting them present their findings for medical scrutiny? The data is nowhere to be found on the company websites - it’s just scientific-sounding gobbledegook, patient testimonials and promises that seem too good to be true (read more about the claims for SDT & NGPDT). 
I hope this warning will reach those tempted to try NGPDT or SDT because they feel there’s "nothing to lose"; a misconception that Sense About Science has tackled ‘I’ve got nothing to lose by trying it’. The truth is, even if unproven therapies are not dangerous, they can lead to wasted time, emotion, energy and money. For SDT expect to part with about £10,000.
In the meantime, while the campaign continues, here’s a plea to the media and to cancer charities: no more gushing about unproven therapies, and no more campaigns to raise money to fund them – it could be doing so much more harm than good.

Tags: Health