Wednesday, July 24, 2013

Patient groups commit to transparency after leaked memo

After a leaked memo emerged which suggested that pharma trade associations in Europe and the USA plan to put pressure on patient groups to speak up against publishing raw data, charities have reiterated their support for campaigns to increase transparency.

The memo was leaked to The Guardian by an employee at an unnamed drugmaker and was drawn up by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the European Federation of Pharmaceutical Industries and Associations (EFPIA). The newspaper, which has seen the memo, says it comes from Richard Bergstrom, director general of EFPIA, and has been sent to the association's members, calling for a  campaign that starts with "mobilising patient groups to express concern about the risk to public health by non-scientific re-use of data".

How far that campaign has advanced is unclear but Lynsey Roberts, press officer at the Alzheimer's Society in the UK, toldPharmaTimes World News that "we have not been approached by these companies as far as I am aware". However, she noted that the charity has signed up to the AllTrials campaign "as we are fully supportive of the idea of all trial data being published".

Meantime the Brussels-based European Patients’ Forum responded to The Guardian’s article by saying that "we denounce the accusation that 'an army of patients groups are being mobilised by pharma to lobby against plans to force companies to publish secret documents on drugs trials'." It adds that "on the contrary, EPF and our members, representing the interests of over 150 million patients with chronic diseases, have consistently called for the publication of all results of all clinical trials, be they industry or publicly funded, in a timely manner, regardless of the outcomes".

The EPF adds that "our engagement in the AllTrials campaign indicates also our unequivocal commitment to disclosure and transparency. We are not aware of any bona fide patient group that would advocate another stance and would be interested to know which patient groups make up the ‘army’ being referred to in the article".

However, concerns about the relationship between pharma and patient groups persist. Tim Reed, executive director of Health Action International, told PharmaTimes World News that "we now have irrefutable evidence that the pharmaceutical industry is ready to use patient organisations to fight their corner to maintain opacity and to deny European citizens information on the medicines they take".
He added that "it underlines the fact that there are patient groups with such a close relationship with the pharmaceutical industry they will go into battle for them". Mr Reed concluded by saying that "patient groups get traction because they are assumed to represent the voice of the suffering…but industry is willing to use them to promote the interests of commerce over the interests of public disclosure and public health".

EFPIA has yet to respond to PharmaTimes World News' request for comment and clarification about the memo.

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