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In whose interest?

2005

Evidence presented to the Health Select Committee’s inquiry into the influence of the pharmaceutical industry in the UK expressed concerns about links between patients groups and pharmaceutical companies, which was later reflected in the Committee’s final report. Now the spotlight falls on activity in Europe.

A report by a pressure group, Health Action International Europe (HAI), lifts the lid on patients’ organisations working at a European level. The report reveals a worrying lack of transparency and accountability of groups claiming to represent patients across Europe. Some of these groups work closely with the European Medicines Agency (EMEA), the European equivalent of the UK’s Medicines and Healthcare Products Agency, and enjoy a privileged position in relation to European institutions like the European Commission. The EMEA makes recommendations to the European Commission about which medicines should receive a licence.

The full report ‘Does the European Patients’ Forum represent patient or industry interests?’ can be downloaded from this link http://www.haiweb.org/

Patient groups at a European level came to prominence when the European Union was considering the relaxation of laws governing the marketing of prescription medicines to consumers in 2001. The ban on direct-to-consumer advertising remains in place, but the groups have maintained their foothold.

On the surface, there may be nothing wrong with the voice of patients being heard on issues that directly affect them, but it is a different story altogether if the groups purporting to represent patients are not very representative and accountable. There is a danger that they are vehicles for pushing the agenda for pharmaceutical companies, not patients.

‘Model of secrecy and conflict of interest’

The report highlights one such group, the European Patient’s Forum (EPF). It was formally established in 2003, although there were several precursors to it. The EPF was quickly ‘elevated into a position of presumed legitimacy as a representative of European patients’ according to the report. This includes occupying two places on the management board of the EMEA. Crucially it fails to declare it funding sources. This lack of formal information means it is impossible to know whether it receives funds from pharmaceutical companies and what influence they may have.

HAI reveal that the EPF does receive some support for its activities from pharmaceutical companies. The onus on a group in its position should be to declare who funds it. The EPF and other similar groups are umbrella organisations of patient groups based in many EU member states. On its website, the EPF lists 13 members, 6 of which, according HAI’s research, do not publish their funding sources. Aside from the concerns about funding sources, can a group with only 13 members really be representative of patients’ views?

IAPO

The EPF is not alone. The International Alliance of Patient Organisations (IAPO) http://www.patientsorganizations.org/index.pl?n=980 has a larger, international membership. It was created in 1999 with funding from a consortium of pharmaceutical companies. IAPO has been consulted by the EMEA.

Since 2003, it has established an Industry Partner Framework. Industry Partners can provide different levels of support and receive different benefits depending on how much money they put in. IAPO is very open about who these partners are, but they are all pharmaceutical companies. GlaxoSmithKline, Merck & Co, Novartis and Pfizer. While there is transparency, questions still remain about how much influence these companies expect to have or have and whether the best interests of patients across Europe are being served.

Research into a number of other groups is now underway and this issue will be brought to the attention of the Council of Europe’s Social, Health and Family Affairs Committee when it meets next.