Before the summer break Danish MEP Margrete Auken asked the Commission who the patients’ organisations that it consults with represented. The question was sparked by revelations from the Danish daily Information that some of the biggest pan-European patient organisations are almost entirely dependent on funding from pharmaceutical giants such as Pfizer, GlaxoSmithKline, Novartis and Merck. The Danish newspaper revealed that the International Alliance of Patients Organizations (IAPO) gets roughly 97% of its revenue from the industry, while the European Patient's Forum (EPF) receives 88% of its overall income from corporate sponsors. MEP Auken urged the Commission to ensure that the groups it consults with genuinely represent European patients, rather than big pharmaceutical corporations.
What does the Commission's voluntary lobby transparency register reveal about the lobbying and funding sources of EU-focused patients groups? Very little.
Just seven of the 27 patient groups surveyed by Corporate Europe Observatory have registered. This means almost 75% of patients groups are boycotting the Commission's register, including the International Alliance of Patients Organizations mentioned above. The European Patients’ Forum is registered, but like the other registered patient groups, it has not disclosed its corporate sponsors. The Commission currently does not require reporting on specific funders, only broad categories of public or private sources. The Commission's register was launched with the intention to secure visibility around who lobbies to influence EU decision-making, on whose behalf and with what funding. In its current form, the register simply does not answer these key questions, as the example of the patients’ groups shows. If the register is to become a truly representative and a reliable source of information for media, citizens and decision makers, it not only has to become (de facto) mandatory but the disclosure requirements must be significantly tightened. Lobby groups should be obliged to disclose their funders and sponsors. Otherwise, the Commission will continue to allow corporate-funded patient organisations to operate in the shadows, pretending to represent European patients.