Patient groups respond to EFPIA and PhRMA leaked memo

23rd July 2013

Two of the largest pharmaceutical industry trade bodies plan to mobilise patient groups in the debate on clinical trial transparency, the Guardian reported. A leaked memo from the European Federation of Pharmaceutical Industry Associations (EFPIA) and the Pharmaceutical Research and Manufacturers of America (PhMRA) sets out their strategy, which begins with “mobilising patient groups to express concern about the risk to public health by non-scientific re-use of data.”

European Patients Forum: “The 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. Our engagement in the AllTrials campaign  indicates also our unequivocal commitment to disclosure and transparency.” You can read the full EPF statement here (PDF).

European Aids Treatment Group: “We believe that patients do a great service, willingly participating in clinical trials for the benefit of medical science and the greater good. (Sometimes of course for their own good too!) It is a travesty of justice that this data is then considered to be ‘private.’ It should be in the public arena for all to see – easy to access and free for all.” You can read the full EATG statement here.

European Cancer Patient Coalition: “We condemn the generalized and unsubstantiated 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”.

ECPC is funded, among others, by the pharmaceutical industry as well as several of its more than 300 members across 42 countries in Europe and beyond. However, ECPC supports the publication of all results, positive or negative, of all clinical trials, irrespective of how they are funded. Patients by their enrolment in clinical trials contribute to research and societal good and therefore, they should have equal access to all results of all trials, as these results concern their own health and life.” You can read the full ECPC statement here.

Broad Coalition of HIV/AIDS Advocates and Advocacy Organizations: “…it is extremely disturbing and regrettable that, according to a report in the Guardian newspaper published on July 21, the two major pharmaceutical trade groups—the Pharmaceutical Research and Manufacturers of America (PhRMA) and the European Federation of Pharmaceutical Industries and Associations (EFPIA)—have launched an effort to try to enlist patient groups in a campaign to oppose AllTrials. This effort must be vociferously opposed, and pharmaceutical companies that belong to these trade groups should publicly reject it.” You can read the full statement here.