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International Clinical Trials Day

Posted by Sile Lane on 20 May 2013

It’s International Clinical Trials Day and just over four months since the AllTrials campaign started. A lot has happened – 300 organisations and 52,000 people have joined; AllTrials was launched in America; patients who took part in clinical trials wrote to the European medicines regulator; and regulators, publishers and researchers have started discussions on practical issues on trial transparency.

Carl Heneghan from the Centre for Evidence-based Medicine told us that “We have seen GSK become the first pharmaceutical company to commit to publish the results of all its drug trials and provide clinical study reports. And Roche has publicly confirmed it will make clinical study reports for all 74 Tamiflu trials available. Three years this has taken and it couldn’t have happened without the support of the AllTrials campaign. It’s hard to envisage the impact publication in full will have on health, but it will be immense.”

However, those who don’t want transparency are making their arguments heard too. The head of pharmaceutical company Lilly UK said last week that patients don’t want companies like his to spend their money sharing “old data.” These “old data” are of course the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.

There are 350 lobbyists from the pharmaceutical industry at the European Parliament so MEPs are hearing arguments against transparency every day. We have until 29^th May – when MEPs vote on new proposals that could increase clinical trial transparency – to make sure they hear our arguments too. Many of you have written to your MEP already – thank you especially to those of you who have kindly allowed us to share your letters in case they are useful for others. If you haven’t already please write to your MEP, let us know if you do and if you get a response.

There are lots of discussions about transparency going on this International Clinical Trials Day …

… the Cochrane Collaboration has put up some short podcasts on international efforts

… there’s an interview with Ben Goldacre about AllTrials and our future plans at BioMed Central

…here’s a blog on why the open science community should sign up and support AllTrials

… but this has to be the last International Clinical Trials Day of the era when trial results are withheld. Please ask 5 people you know to add their name at www.alltrials.net today. Ask your organisation to join if they haven’t already and please write to your organisation’s European and International umbrella groups. Help us get enough resources to continue the campaign by donating at https://www.justgiving.com/alltrials

And write to your MEP today if you haven’t already.

Dr Juliet Stevens responds to misleading article on National Cervical Screening programme

Posted by Volunteer on 14 May 2013

This letter written by Dr Juliet Stevens was sent to the Observer on 2nd April

Dear Editor

Barbara Ellen's article, Denying young women smear tests is a disgrace (28th April) was poorly informed and dangerously misleading.

She confuses the tragic death of Becky Ryder from cervical cancer aged 26, with an argument concerning the age at which the National Cervical Screening programme should commence.

The Screening Programme is only for asymptomatic patients, and is offered in England to women from 25 years of age because studies show that starting screening earlier causes anxiety and unnecessary investigation and treatment, which outweigh the health benefits. The age cut off is not, as the article states, related to a judgement as to the sexual promiscuity of young versus older women.

Crucially, Ms Ryder would have qualified for NHS investigation for cervical cancer when she presented to her GP aged 24 with vaginal bleeding on the basis of her symptoms alone, irrelevant of her age.

The article continues, implying that the HPV vaccine, now offered to all teenage girls, offers substandard protection from cervical cancer as it does not protect against all HPV strains. What she does not mention however, is that the majority of HPV strains are not associated with cervical cancer.

The vaccine (Gardasil) offers extremely reliable protection against both HPV strains which lead to the development of cervical cancer, and two others which cause benign genital warts.

Articles such as these only contribute to misinformation and decreased vaccine uptake, putting more women at risk,

Yours faithfully

Dr Juliet Stevens 

Keel libel laws out of science

Posted by Tracey Brown on 14 May 2013

This is an article for the Index on Censorship magazine and you can read the full piece here.

Tracey Brown looks at one of the UK’s most challenging and important free expression campaigns

As 2013 began, advocates for libel reform looked forward to the final stages of the Defamation Bill passing through UK parliament and greater protection for free speech and the public interest. But on 6 February, members of the House of Lords introduced an amendment to the bill, adding a ‘Leveson clause’ on press regulation. This brought with it the perverse possibility that the bill would introduce serious curtailment of free speech alongside its improvements, and that the government might drop the bill altogether to avoid the amendment becoming law. What will come out of the Leveson Inquiry and its ensuing report is still being contested. The bill, by contrast, has been through three public consultations and seven debates in Parliament. We know that current libel laws in Britain stifle debate and damage the public interest.

We cannot allow political tactics to destroy the work of so many people over so many years. There’s too much at stake

Hepatitis C detector promises hope and nothing more

Posted by Sile Lane on 02 May 2013

This is an article published by the Guardian on 28th February. You can read the full piece here.

Wherever people are confronted with serious threats and a lack of solutions there is a potential market in false hope.

A new device that supposedly detects diseases remotely is being promoted. According to an excited report earlier this week in the Guardian, about a demonstration of the device in an Egyptian hospital, its developers hope it will first be used to detect swine flu and hepatitis C, and later other diseases.

What is being plugged here is hope and nothing more. The device looks like a car radio aerial attached to a handle. It is said to work by detecting a specific frequency emitted by infected liver cells. It is claimed it can detect the disease in a patient from across a room, has never failed to pick up the disease in any patient who has it, and wrongly detects hepatitis where there is none (a "false positive") only 2% of the time.

Dr Juliet Stevens responds to Metro article

Posted by Volunteer on 02 May 2013

This letter written by Dr Juliet Stevens was published in the Metro on 30th April.

Dear Editor
 
In today's Metro there was a short piece on a young woman who very sadly died from cervical cancer, having presented to her GP aged 24, with vaginal bleeding.
 
The article states that her GP refused her a smear because she was too young for the national screening programme (which starts at 25 in England), and implies this contributed to her death.
 
The article goes on to ask why the English National Screening programme starts at 25, when it is offered to women from 20 years of age elsewhere in the UK.
 
This is a tragic case of a woman losing her life at a very young age, but it is not the fault of the National Screening programme,
 
If a patient attends their GP with symptoms, such as bleeding, that might suggest cervical (neck of womb) disease, then she can have a smear and other investigations at any age. The National Screening Programme is only for asymptomatic patients, and the reason the English screening programme is offered to women from 25 years of age, is that studies show that starting screening earlier causes anxiety and unnecessary investigation and treatment, which outweighs the health benefits.
 
http://www.cancerscreening.nhs.uk/cervical/about-cervical-screening.html#invited
 
Yours faithfully
 
Dr Juliet Stevens