Paper short abstract:

This paper explores the public controversy surrounding an Alzheimer’s drug approval. Moving beyond narratives of corruption vs. bureaucratic indifference, I argue that the conflict is indicative of a larger collision between “degeneration time” and “data time” in biomedical research.

Paper long abstract:

When aducanumab (Aduhelm​​®) was approved by the FDA to slow cognitive decline in Alzheimer’s disease in June 2021, there was an immediate public uproar. Researchers publicly decried it as the "worst approval decision in recent history" while, simultaneously, patients activists and advocacy organizations celebrated. This controversy is usually cast as either a victory over bureaucratic indifference to suffering or as evidence of government/pharma corruption in which an ineffective drug was approved to bolster profit. However, based on archival research with public-facing documents produced by both the pro- and anti-approval sides (op-eds, open letters, etc), I argue that the core of this conflict is a collision of two forms of time – and the relations and imaginaries they constitute. The pro-approval side’s logic is driven by "degeneration time" – a term I offer to describe a crisis temporality, structured by urgency, action and individuality, that comes to dominate lives lived around degenerative illness. In contrast, the anti-approval arguments are structured by the grid of intelligibility that follows from "data time" – a distributed, slow form of time that works in an expanded historical moment and prioritizes collective scientific knowledge. By reframing this conflict, I situate it within a long history of drug approval controversies and attempt to think the logics of patients, researchers and regulators together. In doing so, I move beyond the traditional, intractable narrative and ask how we might reconcile these two forms of, seemingly incommensurable, time that continuously collide across and within biomedical publics.