TY - JOUR
T1 - Between the constitution and the clinic
T2 - Formal and de facto rights to healthcare
AU - Heimer, Carol A.
AU - Tolman, Arielle W.
N1 - Funding Information:
American Bar Foundation; National Science Foundation, Grant/Award Number: NSF SES ‐ 0319560 Funding information
Funding Information:
The data for the article were collected as part of a larger research project, “Clinic‐Level Law: The ‘Legalization’ of Medicine in AIDS Treatment and Research” (principal investigator, Carol Heimer), supported by the National Science Foundation (NSF SES – 0319560) and the American Bar Foundation. This research was also supported by Northwestern University Department of Sociology's MacArthur Summer Research Grants. The fieldwork and associated interviews were conducted by Carol Heimer, JuLeigh Petty, Rebecca Culyba, Lynn Gazley, Enid Wamani, and Dusita Pheungsamran. An early version of this article was presented at the 2019 meetings of the Eastern Sociological Society and the Law and Society Association. We are grateful for suggestions received on those occasions as well as for the thoughtful comments of the Law and Society Review editors and anonymous reviewers.
Funding Information:
The data for the article were collected as part of a larger research project, ?Clinic-Level Law: The ?Legalization? of Medicine in AIDS Treatment and Research? (principal investigator, Carol Heimer), supported by the National Science Foundation (NSF SES ? 0319560) and the American Bar Foundation. This research was also supported by Northwestern University Department of Sociology's MacArthur Summer Research Grants. The fieldwork and associated interviews were conducted by Carol Heimer, JuLeigh Petty, Rebecca Culyba, Lynn Gazley, Enid Wamani, and Dusita Pheungsamran. An early version of this article was presented at the 2019 meetings of the Eastern Sociological Society and the Law and Society Association. We are grateful for suggestions received on those occasions as well as for the thoughtful comments of the Law and Society Review editors and anonymous reviewers.
Publisher Copyright:
© 2021 Law and Society Association.
PY - 2021/12
Y1 - 2021/12
N2 - In no domain of global health has there been more talk of rights than in HIV/AIDS, yet little is known about how the right to HIV/AIDS care is mobilized at the clinic level. Drawing on interviews and field observations in the United States, South Africa, Thailand, and Uganda, we analyze the legal consciousness of caregivers in five HIV clinics. We identify three organizational factors—clinics' focus on the distribution rather than the adequacy of existing resources, the duties for caregivers that patients' rights create, and the dominant norms of exchange in healthcare—that help to explain the low penetration of formal rights talk into clinics despite its prevalence outside them. However, we also observe that within clinics, rights may accrue differently than public discourse about rights might lead us to expect. We find that patients often benefit from highly localized, tacit de facto rights that develop gradually over time with the support of state health infrastructure, clinic resources, and professional norms and commitments. These rights would be unlikely to stand up in a court of law but nevertheless have substantial impact on patients' access to care.
AB - In no domain of global health has there been more talk of rights than in HIV/AIDS, yet little is known about how the right to HIV/AIDS care is mobilized at the clinic level. Drawing on interviews and field observations in the United States, South Africa, Thailand, and Uganda, we analyze the legal consciousness of caregivers in five HIV clinics. We identify three organizational factors—clinics' focus on the distribution rather than the adequacy of existing resources, the duties for caregivers that patients' rights create, and the dominant norms of exchange in healthcare—that help to explain the low penetration of formal rights talk into clinics despite its prevalence outside them. However, we also observe that within clinics, rights may accrue differently than public discourse about rights might lead us to expect. We find that patients often benefit from highly localized, tacit de facto rights that develop gradually over time with the support of state health infrastructure, clinic resources, and professional norms and commitments. These rights would be unlikely to stand up in a court of law but nevertheless have substantial impact on patients' access to care.
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U2 - 10.1111/lasr.12577
DO - 10.1111/lasr.12577
M3 - Article
AN - SCOPUS:85120481949
SN - 0023-9216
VL - 55
SP - 563
EP - 586
JO - Law and Society Review
JF - Law and Society Review
IS - 4
ER -