The social construction of Aduhelm in the context of pharmaceutical ambiguity: exploring narratives from informal caregivers, medical professionals, and redditors on r/Alzheimers.

Résumé

INTRODUCTION: In 2021, the Food and Drug Administration approved Aduhelm (Aducanumab), a pharmaceutical developed to treat Alzheimer's disease. At first, many in the advocacy and caregiving community responded with jubilation as there are currently few effective treatments to reduce or eliminate the symptoms of Alzheimer's disease. However, suspicions about the approval process quickly arose as well as concern from the medical community, which led to controversy about the drug. With this context in mind, our study aims to analyze the viewpoints of caregivers, medical professionals, and Redditors on a popular subreddit for caregivers, as the controversy unfolded. Understanding caregivers' perspectives is vital, as they play an important role in medical compliance and Aduhelm's reception may impact adherence to future treatments. We aim to address two research questions: (a) What are the attitudes towards Aduhelm of caregivers, medical professionals, and members of an online forum associated with caregiving for Alzheimer's patients (r/Alzheimers) and (b) How does the controversy surrounding Aduhelm influence attitudes about the health system and medical practice?METHODS: We conducted a grounded theory analysis of 23 semi-structured interviews with caregivers and five medical professionals, alongside an online discourse analysis of r/Alzheimers.RESULTS: Our findings reveal various concerns about Aduhelm involving efficacy, safety, and affordability. Most notably, we find these narratives increased a sense of medical mistrust from participants, which may be problematic for adherence and the doctor/patient interaction.DISCUSSION: Drawing on sociological literature, we introduce the concept of pharmaceutical ambiguity, a theoretical framework for understanding these social phenomena. This study highlights how controversies like that surrounding Aduhelm can deeply erode trust in medical systems.