Legitimate suffering: a case of belonging and sickle cell trait in Brazil

Patient activism organizations are formed around and seek legitimacy via both biological and biographical identities (Fassin, in: Theory Cult Soc 26(5):44–60, 2009). In the case of sickle cell disease (SCD) in Brazil, two different modes of suffering authenticate the lived experience—one is based on the disease state, the other is based on the ways in which racial inequalities and disadvantage contribute to its own suffering while also entangled with disease-based suffering. SCD is a rare genetic disorder that affects red blood cells and whose hallmark symptom is pain. This paper places an ethnographic focus on the failed mobilization of suffering by an organization leader in attempts to make claims for inclusion. The leader’s social and biological identities of mother, sickle cell trait carrier, middle class, and mulata disrupted biosocial cohesion. This disruption reveals a hierarchy of suffering, where some indices of suffering are delegitimized. This hierarchy illuminates how exclusion and representation work within a patient organization whose membership embody both physical and social distress.

Patient-made Long Covid changed COVID-19 (and the production of science, too)

Background: Significant knowledge about long-term symptoms following SARS-CoV-2 infection has been produced by patients, which made Long Covid. Objective: To document and analyse such knowledge, outline how it changed understanding of COVID-19, and specify ethical and socio-political challenges associated with its development.Methods: Analysis of publicly available materials on Long Covid by people with Long Covid, largely in English and Italian, and across media and genre. Results: Those with Long Covid have made epistemic contributions across multiple media, including: oral, written and visual narratives, testimonies and arguments; quantitative and qualitative research; grey literature, essays, opinion pieces and commentaries; and advocacy and policy interventions. Discussion: Patient knowledge contributed to shifting assumptions concerning COVID-19 symptoms and disease pathways; phasing and duration; classification and naming of illness; disease morbidity; and who is affected. Patients’ use of a wide range of media challenged the conventional scientific production of epistemic claims. Many ethical and political challenges lie ahead, including exploitation of patients, their knowledge, and their data.Conclusions: Long Covid patient activism and research have been instrumental to key epistemic shifts that have changed understandings of COVID-19. They have also changed – possibly permanently – how science and medical knowledge are produced. Patient expertise must be routinely integrated into medicine beyond the current pandemic. We also need to ensure the ethical use of patient-led expertise and patient-produced data in Long Covid. Patient contribution: Both authors are patients and researchers with Long Covid, who have contributed to making ‘Long Covid', and to advocacy around its definition and recognition.

Knowledge, evidence, expertise? The epistemics of experience in contemporary healthcare

This paper explores how personal experience acquires the status of knowledge and/or evidence in contemporary healthcare contexts that emphasise being both patient-centred and evidence-based. Drawing on a comparative analysis of three case studies ‐ self-help and mutual aid groups; online patient activism; and patient feedback in healthcare service delivery ‐ we foreground: a) the role that different technologies and temporalities play in how experience is turned (or fails to be turned) into knowledge or evidence; b) the role that experts-of-experience, in addition to the more frequently referenced experts-by-experience, play in mediating how, when and why experience is turned into an epistemic resource; and finally, c) how the need to be ‘evidence-based’ remains a persistent, yet at times productive, challenge to how patient and user experiences are incorporated in contemporary healthcare policy and practice. Throughout the paper, we argue that it is necessary to look at both democratic and epistemic imperatives for including patient and service users in healthcare services and policymaking based on their experience.

The will of Congress? Permissive regulation and the strategic use of labeling for the anti-influenza drug Relenza

Through an analysis of the FDA’s approval of the controversial anti-influenza drug Relenza (zanamivir), we interrogate distinct social scientific theories of pharmaceutical regulation. We investigate why, despite internal negative opinions and an Advisory Committee’s non-approval recommendation, the FDA approved Relenza in the late 1990s. Based on a close reading of FDA documents, we show how agency officials guided the manufacturer’s analyses and participated in constructing a tenuous argument for approval. We show how regulators may strategically design drug labels that can justify their permissive regulation. We consider the explanatory power of official accounts and alternative, partially overlapping, theories of pharmaceutical regulation in the Relenza case, and develop new insights into the institutional dynamics of regulator-industry relations. We find little or no evidence that the FDA was primarily driven by public health concerns, pressure from disease-based patient activism, or a consumerist and neoliberal regulatory logic, although some of these explanations provided managers with convenient rhetoric to rationalize their actions. Rather, we argue that the Relenza case highlights contradictions between a scientific culture at FDA, conducive to rigorous product evaluations, and the agency’s attempts to accommodate higher-level political (i.e. Congress) and industry demands conducive of permissive regulation – consistent with some aspects of reputational and capture theories, as well as with corporate bias theory.

The Politics of Self-Medication

Patients can advocate for rights of self-medication in several ways. First, patients should be included in the process of drug development and should not be prohibited from developing and testing treatments on their own or privately funding medical research. Second, patients can use social media to advocate for access to new drugs and drug approval. Third, patients have a moral right to engage in civil disobedience and to illegally access and distribute pharmaceuticals. Fourth, citizens should support large-scale patient activism, such as the ACT UP and right to try movement. Fifth, officials should advocate for political reforms to protect patients’ rights of self-medication, even if such reforms lack democratic support.

Biomedical Odysseys

Thousands of people from more than eighty countries have traveled to China since 2001 to undergo fetal cell transplantation. Galvanized by the potential of stem and fetal cells to regenerate damaged neurons and restore lost bodily functions, people grappling with paralysis and neurodegenerative disorders have ignored the warnings of doctors and scientists back home in order to stake their futures on a Chinese experiment. This book looks at why and how these individuals have entrusted their lives to Chinese neurosurgeons operating at the forefront of experimental medicine, in a world where technologies and risks move faster than laws can keep pace. The book shows how cutting-edge medicine is not just about the latest advances in biomedical science but also encompasses transformations in online patient activism, surgical intervention, and borderline experiments in health care bureaucracy. The book opens up important theoretical and methodological horizons in the anthropology of science, technology, and medicine. It illuminates how poignant journeys in search of fetal cell cures become tangled in complex webs of digital mediation, the entrepreneurial logics of postsocialist medicine, and fraught debates about the ethics of clinical experimentation. Using innovative methods to track the border-crossing quests of Chinese clinicians and their patients from around the world, the book maps the transnational life of fetal cell therapies.