War on Diseases. Patient Organizations' Problematization and Exploration of Market Issues
Résumé
Why and how do patient organizations intervene into debates on the pricing of drugs? This chapter refreshes our understanding of these two questions by situating patient organizations’ participation in drug pricing discussions into the broader dynamics of patient activism. That patient organizations look for a “fair price” is undisputable. From their point of view, though, a “fair price” is not necessarily a “low price.” Patient organizations reflect on whether or not the prices of drugs account for individual and collective concerns they deem important to count. That patient organizations are eager to defend patients’ interests is equally out of doubt. However, patient organizations are not mere lobbies but play a vital epistemic role: they intervene into therapeutic development, tackle its economic impediments, and explore solutions they feel desirable or “fair” for patients and society at large.