Forty Years Later

Forty years later, there are tens of thousands of patient associations[1], which all use information and communication technologies to ensure their promotion, to exchange knowledge and to educate people. These associations not only help patients to get practical information about their disease and the most appropriate treatments, but they act as lobbies and stakeholders in the health domain. For instance, they press public authorities to fund specific treatments and research; they urge pharmaceutical industries to develop new drugs; they force regulators to speed up evaluation procedures to facilitate the adoption of new medications; they analyze research protocols; they expose side effects of treatments etc. The case of AIDS was particularly illustrative: very strong associations of patients forced medical, industrial and public authorities to boost research and to accelerate administrative procedures, to provide new treatments that have totally changed the outcome of the disease.

More generally, patients' organizations take part in the negotiations between state authorities, research organizations and pharmaceutical industries. They are considered as official actors, which gives them power and recognition. In this regard, the proposition of Ivan Illich, which was to promote groups of patient to impose public control over the organization of medicine, has been granted. We could conclude from this that the spirit of May 1968 won. And, undoubtedly, things have considerably changed due, in part, to the use of modern information and communication technologies, which greatly facilitates the retroaction of patient's associations in public debates and the mobilization through the network of disseminated patients, who can now exert a strong pressure in case of need.

However, recently, many people (Colombo et al. 2012; Mosconi and Colombo 2010; Rothman et al. 2011), have denounced the opacity of patient association funding, which comes partly from industries. To clarify this point, let us recall that, when a patients' organization grows up and augments its influence, it needs to employ full time administrators, who quickly establish a kind of bureaucracy, whose aims are a long way away from patients' interests: quite naturally, these administrators become mainly occupied with the influence of their organization, which justifies their employment and satisfies their personal ambitions. As a consequence, their prior concern is that their organization be considered as an essential stakeholder, and then that it be involved in the main decisions, even if this activity has no direct relationship with patients' interests and care. For instance, they want to be involved in new clinical trials and in the discussion with health care organizations about reimbursement of treatments. It may then happen that industries would secretly negotiate with patient's organizations to constitute coalitions of interests against state organizations or against physician organizations. In such cases, the patients' organizations no longer represent the interests of patients, but their own interests, which may coincide to the interests of pharmaceutical industries, because they give them funds. It follows that the current situation looks to be far away from the spirit of May 1968, even if the patients' associations oppose to the body of physicians and its domination.

  • [1] For instance, the French HAS (“Haute Autorité de la Santéǀ”) has counted more than 14,000 associations of patients for the only France
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