The Pharmaceutical Journal
Vol 277 No 7425 p538
4 November 2006

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Patient groups should disclose financial support

A survey of patient groups based in the US has revealed that seven of 29 groups received at least 20 per cent of their funding from pharmaceutical and medical device companies. Four of the seven groups were associated with conditions thought to be susceptible to disease mongering. The survey was featured as part of a special report on patient groups in the New Scientist last week (28 October, p18).

“ In general,” says New Scientist, “groups in our survey that received more than 20 per cent of their funding from industry did seem to be associated with conditions that affect a significant number of people, for which a specific therapy exists and which require long-term treatment, therefore creating the potential for substantial profit.”

It names the Restless Legs Syndrome Foundation as an example. In contrast, groups that received no industry funding seemed to be for diseases that drug companies have little opportunity to profit by, such as Faces: The National Craniofacial Association, it adds.

A recent study co-authored by Andrew Herxheimer, of the Cochrane Centre in Oxford, is cited in the feature. Dr Herxheimer says: “Basically, it is a muddle, which these organisations haven’t thought about clearly.” The study examined the websites of 69 national and international patient groups — based in the UK, US, Australia, Canada and South Africa — for advertising and disclosure of financial support by pharmaceutical companies (BMC Public Health 2006;6:201).

The study authors conclude that patient group websites do not provide enough information for visitors to assess whether a conflict of interest with industry exists.

They also note that the Association of the British Pharmaceutical Industry’s revised code of practice now requires all members to disclose any involvement a company has with a patient organisation. However, they say that since companies are not required to state the level or nature of that support, that disclosure is thin. The authors highlight that the Government’s response to disclosure by patient groups was to leave them to self-regulate.

Greater guidance and disclosure is required if patient organisations are to remain independent and truly represent the views of patients, they conclude.