Patients’ organizations: independent voices or not?

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Another less well known conflict of interest exists in the relationship between patients’ organizations and the pharmaceutical industry.

Most patients’ organizations have very little money, rely on volunteers, and get little independent funding. Grants from and joint projects with pharmaceutical companies can help them grow and be more influential, but can also distort and misrepresent patients’ agendas, including their  research agendas.

The scale of this problem is difficult to gauge but a fascinating insight comes from a survey done to assess the level of corporate sponsorship of patient and consumer organizations working with the European Medicines Agency.

This Agency coordinates the evaluation and monitoring of new drugs throughout Europe and, to its credit, has actively involved patient and consumer groups in its regulatory activities. However, when 23 such groups were surveyed between 2006 and 2008, 15 were shown to receive partial or significant funding from medicines manufacturers or pharmaceutical industry associations. Moreover, fewer than half of the groups accurately identified to the Agency the source or amount of funding that they received. [17]

In some cases patient organizations have been set up by drug companies to lobby on behalf of their products. For instance, one of the companies that makes interferon formed a new patient group ‘Action for Access’ in an attempt to get the UK National Health Service to provide interferons for multiple sclerosis (see above). [18, 19] The message heard by patient groups from all of this publicity was that interferons were effective but too expensive, when the real issue was whether the drugs had any useful effects.