Contenu du sommaire : Les associations de malades : entre le marché, la science et la médecine

Who makes shift the pledge meter of the French Telethon. A televisual construction of solidarity Since December of 1987, the Association française de lutte contre les myopathies (AFM) (the French Muscular Distrophy Association), organizes the French Telethon, in order to support scientific research and to help the victims of muscular diseases. Unlike most télévision programs, the Telethon is a unique apparatus which aim is to provoke solidarity, and as such is quite exemplary of the transformations that affect the televisual public sphère, the forms of the solidarity and the research public policies. This article deals with the role played by the pledge meter of the French Telethon, and analyses the conditions of emergence, during the show, of a bound up community. It tackles successively the television show, the reception of the program and the local events organized during the television program. The final figure of the meter can not be surely linked to the evolution, measured in real time, of the solidarity events; nor to the strategies of the producers of the program. That is by the variations of the figure, translating in accelerations and decelerations the different deals (monetary and human), which ties every one and ail to the courage of the sick persons and to the efforts of the scientists, that the meter device manage to corne into sight ail together the monetary value of the pledges and the solidarity between the people who make common cause in the Telethon community.

The participation of patients in the process of production of knowledge: the case of the french muscular distrophies association This article presents work in progress on support given by the French muscular dystrophies association (Association française contre les myopathies) to clinical and biological research related to neuromuscular illnesses since the beginning of the 1980s. Our preliminary findings show that people with these diseases and their families participate actively in the production of knowledge. They also have a remarkable capacity for negotiating with specialists about the orientations of research and practice. This original form of relationships between patients, clinicians and researchers suggests a model of mutual learning which is embodied in what the authors term a «reflexive organization».

Science, market and compassion. How associations fighting against AIDS are involved in helping to put new molecules into circulation This article looks how associations fighting against AIDS are working to gain acceptance for a compassionate approach to patients in urgent need of therapy. Compassion means giving such patients access to biomedical innovations which have not yet been fully assessed or approved. The article shows how pressure from associations has allowed compassion to be gradually formalised within legal and administrative Systems, thus becoming a new method of making molecules available, outside of the controlled clinical trial and standard marketing circuits. It compares a series of cases in order to analyse how, within a framework of compassion, associations have shaped both the offer and the demand for molecules. Using a specific case study — ritonavir being made available before receiving authorisation to be marketed in early 1996 — it analyses the complex situations which require that the compassionate relationship with patients, medicine marketing regulations and scientific research methods ail be considered at the same time. It thus highlights the existence of different configurations used by the associations to define the relationships between science, market and compassion.

This article deals with the involvement in research of the French patient association on cystic fibrosis and distinguishes two phases. In a first phase, the adoption of a classical approach to the management of public research was successful in creating a dedicated scientific community. It also drove to a progressive diversification of types of research activities. Four types have been identified which require, in order to progress towards thérapies, différent forms of support by the Association. This diversification entails new requirements for the management of its research effort by the association, for weighing the relative importance given to each type, for the definition of the forms adapted to each action and for their real time monitoring. This has driven the Association to rethink its organisation, thus defining a new approach which departs from both the public and industrial models of research management.

Race, biology and illness: the difficulty for patients suffering from sickle cell disease to organize themselves in the US Sickle cell anemia, the first disease located at the molecular level in 1949, has long been understood as particular to african-americans. By examining the history of sickle cell disease in the US, this paper demonstrates the scientific and social production of sickle cell as a « black person's disease ». The multiple processes of group construction and identification which take race and disease into account will be examined. The interplay of race, biology, and disease in the case of individual african-americans who are not part of larger patient organizations can help to explain the experience of sickle cell as an element of a « minority's » reality in a society where differences made visible have resulted in discrimination of various forms.