HIV/AIDS

In 1990, Congress established the Ryan White HIV/AIDS Program (RWHP). The program has since expanded to cover numerous treatments and support services. It’s hard to overstate how transformative RWHP has been, but hundreds of thousands of other people had died from the same condition White had, so why did politicians wait to enact serious AIDS healthcare? Bluntly, White’s AIDS education activism was sympathetic because he embodied a “moral innocence,” a quality the public did not usually extend to gay men, intravenous (...) drug users, or others who suffered from HIV/AIDS. I ask two questions about this delayed political support. First, are there any moral problems with appealing to moral innocence, even if it secures public support and medical care, by hierarchically ranking lives as more or less sympathetic? Second, can we reduce or eliminate these problems, or are they a necessary cost to getting the public to care about marginalized communities? (shrink)

In Cinemas of Bisexual Transgression, Jacob Engelberg makes the case for radically recalibrating queer film studies, taking as a starting point those cinematic figures who resist categorization within the gay-straight binary. Engelberg’s engagement with bisexual transgression on film illuminates the mutability and instability of sexuality, and of sociocultural structures more broadly by resisting the censure of images as politically harmful as well as the celebration of transgression as inherently subversive. Instead, Engelberg understands bisexual transgression as a process whereby sociocultural rules (...) are made knowable by being contested. From 1970s vampire films to 1990s erotic thrillers, from lesbian imaginings of female bisexuality to European art cinema’s reckonings with HIV/AIDS, bisexual figures on film embody anxieties around the precarity of binary sexuality while revealing the contingencies of sexuality’s cinematic signification. Revivifying the underexploited contributions of bisexual theory, Cinemas of Bisexual Transgression proposes a new mode of film theorization and analysis that examines the rich space between and beyond dominant categories of sexual organization, where sexual unpredictability, the allure of the forbidden, and the precarity of sexual signification are illuminated. (shrink)

The Erased Generation: The Account Is Open and History Is Waiting develops a general theory of how institutions process, close, and misrecognise the aftermath of large-scale crises, using the HIV epidemic as its primary historical case. While biomedical advances transformed HIV into a manageable condition, institutional systems simultaneously reverted to frameworks structured around linear recovery, measurable stability, and uninterrupted biographical development. This transition produced a structural misalignment between lived survival and institutional recognition. The book identifies a specific phenomenon it defines (...) as the “erased generation”: populations whose identities, cognitive adaptations, and life trajectories were formed under conditions of sustained crisis, yet whose experiences become illegible once institutions declare the crisis resolved. The analysis introduces three core concepts, temporal abandonment, narrative violence, and the unbalanced ledger of recognition, as tools for understanding how institutional systems convert historically grounded survival strategies into apparent individual deficiency. It further develops the concept of ontological disruption, demonstrating how crisis conditions reshape temporal consciousness, identity formation, and the capacity for long-term projection. Grounded in a detailed reconstruction of the HIV mortality era, particularly the period between 1987 and 1996, the work examines how stigma, anticipated death, systemic discrimination, and informal care infrastructures produced forms of adaptive intelligence, including hypervigilance, dual identity structures, and complex social navigation. These adaptations, rational within crisis conditions, are subsequently misinterpreted within post-crisis institutional frameworks. Drawing on sociology, disability studies, governance theory, and neurodivergence research, the book integrates the Equilibrium Ledger as a broader explanatory model for how institutions recognise value and legitimacy through measurable categories while excluding forms of knowledge produced under conditions of extreme uncertainty. Through historically grounded analysis and theoretical synthesis, the work demonstrates how procedural neutrality can generate structural exclusion, particularly when institutional time fails to align with lived time. While grounded in the historical case of HIV, the framework developed here is not disease-specific. It provides a general model for analysing how institutions convert crisis into closure, and how that closure produces systematic forms of misrecognition across domains including health, education, labour, and governance. The book argues that post-crisis justice requires not only recognition of survival, but a recalibration of the frameworks through which institutions evaluate competence, legitimacy, and contribution. (shrink)

South African writer Phaswane Mpe (1970—2004) is often canonized and memorialized as a brave truth-teller who broke the silence on HIV/AIDS in the context of government silence and denial. And yet Mpe’s writings—including poetry, short stories, a novel, and scholarly criticism—contemplate illness as a problem for truth and representation in works that linger in silence and ambiguity. This article analyses the tension between silence and speech in Mpe’s creative writing in response to HIV/AIDS. Using Mpe’s works as an illustrative example, (...) I trouble the desire to read illness narratives as forms of truth-telling and silence-breaking. The desire for the transparency of speech in a global archive of illness narratives also informs a colonial politics of representation that instrumentalizes literature as ethnographic evidence. Mpe’s writing on HIV/AIDS refuses a demand for authenticity by holding the embodied experience of disease at a slight remove from the reader in order to register the forms of spiritual and epistemological crisis that epidemic and social loss produce. My contention is that the political stakes of this writing lie not in Mpe’s ability to render a public health crisis with verisimilitude, but in the capacity for writing to provide solace and sublimity faced with death. Through an analysis of Mpe’s fiction and poetry, this article proposes a methodology for reading the politics of illness narratives across globalized space which attends to the world-building potential of creative expression as a radical practice that resists incorporative models of aesthetic intelligibility. (shrink)

Research involving vulnerable populations of people living with HIV (PLWH), such as children, adolescents, older adults, pregnant and lactating women, hospitalized patients, and key populations, presents complex bioethical challenges. We assessed bioethics training needs for trainees engaged in HIV research from the School of Medicine (SoM) of Makerere University and the Infectious Disease Institute (IDI) to inform the development of a comprehensive bioethics training program for trainees. A cross-sectional quantitative study was conducted from March to May 2024 using an online (...) structured questionnaire distributed via Google Forms. Participants included former and current trainees who have conducted research with PLWH within the past five years. Data collected included self-rated bioethics knowledge, frequency of encountering bioethical challenges, confidence in addressing challenges across vulnerable populations, and preferred training topics and delivery formats. Descriptive data analysis was performed using STATA Version 17. We attained a response rate of 67.5% (108/160). While 75.9% reported formal bioethics training, 58.3% rated their knowledge moderate. Frequently encountered challenges included maintaining confidentiality and privacy (61.1%), conducting informed consent processes (56.1%), applying bioethical principles, engaging with communities (54.6%), and selecting appropriate research participants (51.4%). Confidence in addressing bioethical challenges was notably lower for vulnerable populations than for general HIV research. Confidence of the trainees was higher in research involving older PLWH and pregnant/lactating women, moderate with children/adolescents and hospitalized individuals, and very low with key populations. Trainees expressed limited confidence in addressing cultural sensitivity, stigma, coercion, community engagement, harm monitoring, and compensation for research-related harm across all the populations. Top training priorities included ethical issues with research involving vulnerable populations (97.2%), reporting ethical concerns (94.4%), community engagement (93.6%), research on stored samples/data (94.5%), and stigma/discrimination (92.6%). Preferred formats were in-person workshops, interactive case-based scenarios, and online courses. Trainees faced diverse bioethical challenges and exhibited varying confidence levels in addressing these issues across different vulnerable populations. These findings underscore the need for targeted, context-specific bioethics training tailored to conducting research with vulnerable PLWH. This study has informed the development of a comprehensive training program to improve the ethical conduct of HIV research in Uganda. Not applicable. (shrink)

Human immunodeficiency virus (HIV) vaccine trials are needed in efforts to prevent infection and acquired immunodeficiency syndrome (AIDS). Like other types of research, HIV vaccine trials present benefits and risks that may or may not be anticipated by participants. Perceptions of risks and benefits often vary with contextual factors, such as sociocultural and economic variables, which are important in low- and middle-income countries (LMICs). This integrative review aimed to determine the risks and benefits of HIV vaccine trial participation reported in (...) the LMICs from 1995 to 2024. The risks and benefits were reported by participants and potential participants during trial preparations, recruitment, actual trial participation or after trial participation. In this review we assessed on how the risks and benefits were described by the authors of the reviewed studies. We also sought to categorize these risks and benefits, consider ethical implications, identify gaps for further research, and recommend actions for policy improvement. The integrative review screened studies from four databases (CINAHL, Embase, MEDLINE and Web of Science). Studies were eligible if they involved interactions with human subjects and were written in English. Covidence software was used to organize the search outcomes. Twenty-five studies met inclusion criteria. Identified benefits included a sense of altruism, free healthcare, financial incentives and HIV education. Risks included stigma and discrimination associated with vaccine-induced seropositivity, perceived racism and fear of delayed harms. Important descriptions of risks and benefits (e.g., magnitude and likelihood) were missing. Free healthcare and financial incentives may render participants too influenced to enter consent, which is an important ethical concern in LMICs. The literature was scant, highlighting a need for research on how participants in LMICs are informed about weighing risks and benefits of HIV vaccine trial participation. More in-depth description of risks and benefits is warranted. Standardized risk/benefit assessment frameworks tailored to the context of these trials in LMICs are needed. (shrink)

Illness narratives invite practitioners to understand how biomedical and traditional health information is incorporated, integrated, or otherwise internalized into a patient’s own sense of self and social identity. Such narratives also reveal cultural values, underlying patterns in society, and the overall life context of the narrator. Most illness narratives have been examined from the perspective of European-derived genres and literary theory, even though theorists from other parts of the globe have developed locally relevant literary theories. Further, illness narratives typically examine (...) only the experience of illness through acute or chronic suffering (and potential recovery). The advent of biomedical disease prevention methods like post- and pre-exposure prophylaxis (PEP and PrEP) for HIV, which require daily pill consumption or regular injections, complicates the notion of an illness narrative by including illness prevention in narrative accounts. This paper has two aims. First, we aim to rectify the Eurocentrism of existing illness narrative theory by incorporating insights from African literary theorists; second, we complicate the category by examining prevention narratives as a subset of illness narratives. We do this by investigating several narratives of HIV prevention from informants enrolled in an HIV prevention trial in Kenya and Uganda in 2022. (shrink)

Mathematical modelling has played an increasingly prominent role in public health responses, for example by offering estimates of how infectious disease incidence over time may be affected by the adoption of certain policies and interventions. In this paper, we call for greater research and reflection into the ethics of mathematical modeling in public health. First, we present some promising ways of framing the ethics of mathematical modeling that have been offered in the very few publications specifically devoted to this subject. (...) Second, to draw out some issues that have not yet been sufficiently considered, we bring in the case of mathematical modeling in voluntary medical male circumcision (VMMC) initiatives for HIV prevention in Africa. We argue that greater attention should be paid to ethical considerations in mathematical modeling, particularly as its use is becoming more widespread and its potential impacts are becoming greater in the ‘big data’ era, as witnessed during the COVID-19 pandemic. (shrink)

The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant (...) condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the EOL. Multiple ethical and logistical challenges have been revealed during this time; here, we share our lessons learnt and ethical analysis. Issues relevant to healthcare research include surrogate informed consent, personal and professional boundaries, challenges posed conducting research in a pandemic, and clinician burnout and emotional support. Issues more specific to EOL and postmortem research include dual roles of clinical care and research teams, communication between research personnel and clinical teams, legally required versus rapid research autopsy, identification of next of kin/loved ones and issues of inclusion. Issues specific to the Last Gift include logistics of body donation and rapid research autopsy, and disposition of the body as a study benefit. We recommend EOL research teams to have clear provisions around surrogate informed consent, rotate personnel to maintain boundaries, limit direct contact with staff associated with clinical care and have a clear plan for legally required versus research autopsies, among other recommendations. (shrink)

In this paper, I consider how trust affects the decisions of men who have sex with men (MSM) around using pre-exposure prophylaxis (PrEP) as HIV prevention in their sexual and romantic relationships, and how the use of PrEP affects their relationships with healthcare providers. MSM have to trust their sexual and romantic partners as well as their healthcare providers for PrEP to be successful as a relatively new HIV prevention strategy. This trust includes both interpersonal trust and institutional trust and (...) it is complicated by different kinds of relationship dynamics and the history of prejudice against MSM in healthcare institutions. (shrink)

Contemporary debates about sexual ethics are dominated by a consent-oriented approach—consensualism. This position well explains the immorality of such acts as rape, pedophilia, bestiality and necrophilia. However, consensualism faces difficulties when it comes to adultery or HIV transmission. This article analyzes such unacquired moral obligations not to engage in consensual sex. A new natural law approach is proposed to explain and justify these obligations. This position places central importance in the evaluation of sexual acts on whether they are aimed at (...) achieving some common good and whether they harm some other good. As will be shown, the new natural law overcomes the difficulties of consensualism and grounds unacquired obligations in sexual ethics. And if this approach is combined with a pluralistic view of the goods that are realized in sex, then the new natural law does not allow the conservative conclusions about sexual morality inherent in the old natural law theory. (shrink)

Life among most African families and communities revolves around women. In both African religion and culture, women’s lives oscillate between two opposite extremes of being at the centre and periphery at the same time. Women are both the healers and the often wounded by the system that respects them when there are problems and displaces them whenever there are opportunities. Their central role is expressed by a Shona proverb musha mukadzi (the home is a woman). This proverb expresses how women (...) endure the pain of both religion and culture to create a decent society. Women also endure the pain of pandemics such as human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) and COVID-19 and at times succumb to the same while taking care of some family members who would have fallen victim to the epidemic. Countless married women have been made susceptible to HIV and AIDS as they try to live according to the African cultural dictates of mothering and/or motherhood. Other women and girls also contract the disease because of how religion and culture exert them to some unbearable circumstances. For example, women and girls nurse their ill relatives without protective equipment and clothing. At times they are abused by men because of some cultural beliefs that unprotected sex is a remedy for HIV and AIDS. In addition, most women and girls were also victims of COVID-19 while serving their family members. In doing all the good work to serve families, women are driven by the proverb musha mukadzi. Using desk research methodology, this paper argues that musha mukadzi is both a toolkit for women’s resilience to endure pandemics and at the same time a subtly oppressive statement often used to manipulate and abuse women to stand in places that are too difficult for their capabilities. Contribution: African women bear the brunt of pandemic burdens such as HIV, AIDS and COVID-19. Sometimes they become susceptible to the same while taking care of their family members affected by pandemics in the name of fulfilling the Shona proverb, musha mukadzi. The topic has contributed to the scope of the journal as it advocates to inculcate a peaceful society. The article also challenges African societies not to use musha mukadzi to ill-treat women as objects of African religio-cultural patriarchal ideology. (shrink)

In this case study, I address the procedural ethics of conversation analysis (CA) and the collection of naturally occurring mundane interactions. I draw from the challenges that emerged from the institutional ethics review of the HIV, health and interaction study (the H2I Study), a CA project that sought to identify the practices through which normative assumptions of HIV and other health conditions are produced in conversations. Consistent with CA’s preference for naturally occurring interactions, the H2I Study collected and analysed everyday (...) telephone calls involving people living with HIV. This article offers practical strategies CA researchers might use to navigate two ethical concerns raised about the collection of naturally occurring mundane interactions. The first questions the merits of collecting naturally occurring mundane interactions. For those unfamiliar with CA, the specific advantages of analysing naturally occurring mundane interactions may not be self-evident. This places an evidentiary burden on CA researchers to warrant the collection of this type of data. To address this concern, I suggest demonstrating in ethics applications the analytic value of CA using publicly available interactions. The second concern questions the use of verbal consent necessary for the collection of naturally occurring mundane interactions. Like most CA research, the H2I Study required flexible informed consent protocols appropriate for spontaneous and unpredictable interactions. Drawing from within and outside the CA literature, I offer three rationales for the use of verbal consent. This article is written as a practical resource for conversation analysts seeking approval from their research ethics board (REB) and for REBs who might be unfamiliar with CA research. This article contributes to a small but growing body of literature that documents not only the kinds of challenges CA researchers encounter from institutional ethics review, but the specific procedural ethics they may employ to secure ethics approval. (shrink)

Through a rhetorical analysis of fragments of language used by United States public health experts, victims, and advocates during the early periods of polio, HIV and COVID-19, this project shows how constitutive rhetoric within infectious disease discourse articulates the subject position of potential victim for different publics. The author finds that the analyzed discourse simultaneously calls forth a negative identity that asks people to not become something and also asks for actions to prevent disease spread – and, in doing so, (...) the awakening of potential victim reveals hegemonic assumptions about whose bodies are valued and whose are not. (shrink)

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/AIDS research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar as the scientific (...) opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting. (shrink)

Politikwissenschaftler und Sozialphilosoph Karsten Schubert beleuchtet den Zusammenhang von Sexualität und schwuler Politik und fragt, welche Art von Politik in welcher Situation der HIV-Pandemie begünstigt beziehungsweise verhindert wurde. Dazu erläutert er zwei Thesen.

Gay men have been severely affected by the AIDS crisis, and gay subjectivity, sexual ethics, and politics continue to be deeply influenced by HIV to this day. PrEP (Pre-Exposure Prophylaxis) is a new, drug-based HIV prevention technique, that allows disentangling gay sex from its widespread, 40 yearlong association with illness and death. This article explores PrEP's fundamental impact on gay subjectivity, sexual ethics, and politics. It traces the genealogy of gay politics regarding homophobia and HIV stigma, suggesting a new biopolitical (...) and body political framework that accounts for the agency of activists as well as pharmapower, and proposing that PrEP is an example of democratic biopolitics. Highlighting the entanglement of medical technology, sexual ethics, and politics, the article shows how conservative and homonormative gay politics developed as a reaction to HIV stigma and how, by overcoming this stigma, PrEP enables a new era of intersectional queer politics and solidarities. It thereby develops a Foucauldian account of sexual liberation beyond the repression hypothesis that accounts for the ambivalence of sexual subjectification and the political potential of sexuality. (shrink)

Images of Health and Disease: the Example of HIV/AIDS. There are two phases in the history of HIV/AIDS in the 1980s and 1990s. In the first of them, which lasted until the mid-1980s, HIV/AIDS was constructed as a disease of the (sexual) other. The second phase began around 1985 when the focus of AIDS prevention programs gradually shifted from „risk groups“ to „risk behavior“. This transformation came along with a reframing of the sexually active individual as self-reliant and socially responsible. (...) Furthermore, the emergence of the risk discourse was accompanied by an iconography of a healthy and athletic „prevention body“. In the 1990s it increasingly replaced the emaciated „AIDS body“ that had dominated in the early years. (shrink)

In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students were recruited from (...) KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013–14) and, prompted (...) by these earlier findings, an interview study in HIV services (2014–15). We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach. (shrink)

BackgroundLittle is known about volunteers from Northern research settings who participate in vaccine trials of highly infectious diseases with no approved treatments. This article explores the motivations of HIV immunocompromised study participants in Canada who volunteered in a Phase II clinical trial that evaluated the safety and immunogenicity of an Ebola vaccine candidate.MethodsObservation at the clinical study site and semi-structured interviews employing situational and discursive analysis were conducted with clinical trial participants and staff over one year. Interviews were recorded, transcribed (...) and analysed using critical qualitative interpretivist thematic analytical techniques. Patterns were identified, clustered and sorted to generate distinct and comprehensive themes. We then reassembled events and contexts from the study participants’ stories to develop two ideal portraits based on "composite characters" based on study participants features. These provide ethnographically rich details of participants’ meaningful social worlds while protecting individual identities.ResultsTen of the 14 clinical trial participants, and 3 study staff were interviewed. Participant demographics and socio-economic profiles expressed limited contextual diversity. Half were men who have sex with men, half were former injection drug users experiencing homelessness, one was female, none were racialized minorities and there were no people from HIV endemic countries. Fully 90% had previous involvement in other clinical studies. Their stories point to particular socio-economic situations that motivated their participation as clinical labor through trial participation.ConclusionsOur findings support Fisher’s argument of “structural coercion” in clinical trial recruitment of vulnerable individuals experiencing precarious living conditions. Clinical trials should provide more detail of the structural socio-economic conditions and healthcare needs which lie “under consent” of study participants. Going well beyond an overly convenient narrative of altruism, ethical deliberation frameworks need to sufficiently address the structural conditions of clinical trials. We offer concrete possibilities for this and acknowledge that further research and clinical data should be made available underlying study participant contexts with regards to recruitment and participation in resource poor settings, in both the South and the North. (shrink)

This paper describes maslahah, a fundamental concept in Islam and its application in deliberating permissibility of human germline gene editing from an Islamic perspective. This paper refers to He Jiankui’s research that led to the birth of the world’s first gene edited babies, who were edited to be protected from HIV. The objective, procedure, and output of the research were assessed against the conditions of maslahah. It can be concluded that the experiment did not meet the conditions; it is inconsistent (...) with the objectives of shariah and some fundamental Islamic teachings that it did not preserve greater benefit, hence it could be considered impermissible. (shrink)

Despite several research on HIV/aids, it is still incumbent to investigate more effective control measures to mitigate its infection level. Therefore, we introduce an HIV/aids-resistant model with behavior change and study its basic properties. In order to determine the most sensitive parameters that are responsible for disease transmission with respect to the basic reproduction number and those responsible for disease prevalence with respect to the endemic equilibrium, the sensitivity analysis was established and it was confirmed that the influx rate of (...) people into the infected population and total abstinence from all risk practices and endemic areas are some of the most sensitive parameters for disease spread and disease eradication, respectively. Furthermore, by considering controls u1\documentclass[12pt]{minimal} \usepackage{amsmath} \usepackage{wasysym} \usepackage{amsfonts} \usepackage{amssymb} \usepackage{amsbsy} \usepackage{mathrsfs} \usepackage{upgreek} \setlength{\oddsidemargin}{-69pt} \begin{document}$$u_1$$\end{document} denoting the government’s intervention in promoting and encouraging behavior change, u2\documentclass[12pt]{minimal} \usepackage{amsmath} \usepackage{wasysym} \usepackage{amsfonts} \usepackage{amssymb} \usepackage{amsbsy} \usepackage{mathrsfs} \usepackage{upgreek} \setlength{\oddsidemargin}{-69pt} \begin{document}$$u_2$$\end{document} representing intake of balanced nutritional supplementation, and u3\documentclass[12pt]{minimal} \usepackage{amsmath} \usepackage{wasysym} \usepackage{amsfonts} \usepackage{amssymb} \usepackage{amsbsy} \usepackage{mathrsfs} \usepackage{upgreek} \setlength{\oddsidemargin}{-69pt} \begin{document}$$u_3$$\end{document} connoting antiretroviral therapy (ART), an optimal control problem was developed and analyzed. Before the establishment of the necessary conditions of the optimal control using Pontryagin’s Maximum Principle, we proved the existence of the optimal control triplet (u1(t),u2(t),u3(t)∈Φ,\documentclass[12pt]{minimal} \usepackage{amsmath} \usepackage{wasysym} \usepackage{amsfonts} \usepackage{amssymb} \usepackage{amsbsy} \usepackage{mathrsfs} \usepackage{upgreek} \setlength{\oddsidemargin}{-69pt} \begin{document}$$(u_1(t),u_2(t),u_3(t)\in \Phi,$$\end{document} where Φ\documentclass[12pt]{minimal} \usepackage{amsmath} \usepackage{wasysym} \usepackage{amsfonts} \usepackage{amssymb} \usepackage{amsbsy} \usepackage{mathrsfs} \usepackage{upgreek} \setlength{\oddsidemargin}{-69pt} \begin{document}$$\Phi$$\end{document} is the control set at time t,) which has been neglected by many researchers in recent years. Using the Runge–Kutta scheme, the optimal control problem was solved to understand the best combination of control strategies. Using the demographic and epidemiological data for South Africa on HIV/aids, a numerical simulation was carried out and results are presented on 3D surface plots. The obtained results suggested that the combination of all the considered control measures is the best method to ensure disease eradication. (shrink)

A nonlinear differential equation model is proposed to study the dynamics of HIV/AIDS and its effects on workforce productivity. The disease-free equilibrium point of the model is shown to be locally asymptotically stable when the associated basic reproduction number $$\mathcal{{R}}_{0}$$ is less than unity. The model is also shown to exhibit multiple endemic states for some parameter values when $$\mathcal{{R}}_{0} 1$$. Global asymptotic stability of the disease-free equilibrium is guaranteed only when the fractions of the Susceptible subclass populations are within (...) some bounds. Optimal control analysis of the model revealed that the most cost effective strategy that should be adopted in the fight against HIV/AIDS spread within the workforce is one that seeks to prevent infections and the treatment of infected individuals. (shrink)

BackgroundCritical public health measures implemented to mitigate the spread of the novel coronavirus disease (COVID-19) pandemic have disrupted health research worldwide, including HIV prevention research. While general guidance has been issued for the responsible conduct of research in these challenging circumstances, the contours of the dueling COVID-19 and HIV/aids pandemics raise some critical ethical issues for HIV prevention research. In this paper, we use the recently updated HIV Prevention Trials Network (HPTN) Ethics Guidance Document (EGD) to situate and analyze key (...) ethical challenges related to the conduct of HIV prevention research during the COVID-19 pandemic as well as identify potential areas for refinement of the guidance document based on this unprecedented state of affairs.Main bodyNecessary actions taken for HIV prevention research studies due to the COVID-19 pandemic involve an array of ethical issues including those related to: (1) risk mitigation; (2) behavior change; (3) compounding vulnerability; (4) community engagement; (5) trial reopening; and 6) shifting research priorities.ConclusionsIn the context of the dueling HIV and COVID-19 global pandemics, research teams and sponsors must be nimble in responding to the rapidly changing environment by being sensitive to the associated ethical issues. The HTPN EGD provides a rich set of tools to help identify, analyze and address many of these issues. At the same time, future refinements of the HPTN EGD and other research ethics guidance could be strengthened by providing explicit advice regarding the ethical issues associated with disrupted research and the reopening of studies. In addition, additional consideration should be given to appropriately balancing domains of risk (e.g., physical versus social), addressing the vulnerability of research staff and community partners, and responding to un-anticipatable ancillary care needs of participants and communities. Appropriately addressing these issues will necessitate conceptual work, which would benefit from the careful documentation of the actual ethical issues encountered in research, the strategies implemented to overcome them, and their success in doing so. Throughout all of these efforts, it is critical to remember that the HIV pandemic not be forgotten in the rush to deal with the COVID-19 pandemic. (shrink)

AIDS is acquired immune deficiency syndrome. It is the result of infection with human immunodeficiency virus (HIV). It is the last stage of HIV infection and will lead to death if not treated. After infection it can take 2–15 years to develop. The infection destroys the immune system. When AIDS occurs, the immune system has already been severely damaged. Patients develop opportunistic infections or cancers.

In this paper, I utilise the tools of analytic philosophy to amalgamate mono-causal and multi-causal theories of disease. My aim is to better integrate viral and socio-economic explanations of AIDS in particular, and to consider how the perceived divide between mono-causal and multi-causal theories played a role in the tragedy of AIDS denialism in South Africa in the early 2000s. Currently, there is conceptual ambiguity surrounding the relationship between mono-causal and multi-causal theories in biomedicine and epidemiology. Mono-causal theories focus on (...) single, typically microbial, sources of illness and are most concerned with infectious diseases. By contrast, multi-causal theories allow for multiple factors to underpin a disease’s aetiology, including socio-economic and behavioural factors, and they usually focus on chronic non-communicable diseases. However, if these theories are taken to be strictly distinct, this prevents the inclusion of both microbial and socio-economic factors in a single explanation of any particular disease. This strict distinction became a problem when trying to explain the disproportionate prevalence of AIDS in southern Africa and ultimately contributed to the tragedy of AIDS denialism in South Africa. In tandem with viewing how the perceived divide between multi-causal and mono-causal theories underpinned AIDS denialism, I examine Thabo Mbeki’s specific role, while acknowledging that AIDS is being deprioritised on a broader international level. Overall, I will demonstrate that any long-term plan to eliminate AIDS will require viral and socio-economic factors to be considered simultaneously and that such a theoretical approach requires a clearer understanding of the underlying concepts of disease aetiology. (shrink)

The author reviews various conceptions of autonomy to show that humans are actually not autonomous, strictly speaking. He argues for a need to rethink the personal autonomy approaches to HIV testing in sub-Saharan Africa (SSA) countries. HIV/AIDS has remained a leading cause of disease burden in SSA. It is important to bring this disease burden under control, especially given the availability of current effective antiretroviral regimens in low- and middle-income countries. In most SSA countries the ethic or value of personal (...) autonomy or self-determination is promoted as primary in HIV testing decision-making. SSA policymakers have an ontological and moral duty to adopt HIV testing policies that reflect human and medical realities, relationships, local contexts, and respect human rights for both individuals and others who are affected by HIV in society. Without rethinking the value of autonomy in HIV testing decision-making, the article cautions that attainment of the Sustainable Development Goal (SDG) 3 and the UNAIDS fast-track strategy that explicitly call to end the epidemic by 2030 will not be feasible for SSA. (shrink)

In this article I read textual metaphors of ‘untouchability’ in ‘post-AIDS’ representation as an erasure of structures that condition HIV stigmatization in India. Throughout, my discussion is contextualised by the political economy of HIV and AIDS, which has been productive of particular modern sexual subjects. In the film My Brother…Nikhil, the stigmatization of Nikhil, a gay Indian man living with HIV, is constituted through visual and verbal caste metaphors, which draw on existing subject positions that are elided as ‘traditional’, residual, (...) and receding. This stigma is resolved textually through parental acceptance of the gay protagonist and his partner, projecting stigma as traditional and modernity as the resolution. Such metaphors of ‘untouchability’ prevent the representation of queer Dalit subjects in contexts of HIV and AIDS. Yet if addressing shame and social stigma are key to HIV treatment and prevention programmes, caste cannot be set aside simply as a metaphor. Expanding to include textual representations of queer Dalit subjectivity, the article reads a novel, The Boyfriend, and a poem, “Gandu Bagicha,” to show ways in which caste stigma and homophobia intersect in contexts of seroconversion risk. (shrink)

In order to demedicalize the ethics of pre-exposure prophylaxis as HIV prevention, I consider the social effects on men who have sex with men. The Centers for Disease Control and Prevention considers MSM to be the highest risk group for contracting HIV in the USA. The ethics of using PrEP as HIV prevention among MSM, however, has both a medical dimension and a social dimension. While the medical dimension of the ethics of PrEP includes concerns about side effects, drug resistance (...) and distribution, the social dimension of the ethics of PrEP includes concerns about stigmatization, sexual and romantic relationships and sexual freedom. The medical concerns of the ethics of PrEP may take precedence over the social concerns, but there is a growing body of literature that already addresses the medical concerns. Much less attention has been given to the social concerns of the ethics of PrEP, and in this article, I aim to fill this gap in the literature. Therefore, I focus on the often-overlooked social dimension of the ethics of PrEP to help understand the connection between the risks, relationships and communities of MSM using PrEP as HIV prevention. (shrink)

Die Einführung der HIV-Prophylaxe PrEP ist ein Beispiel für demokratische Biopolitik und macht Hoffnung auf eine Beendigung von Sexnegativität und Stigmatisierung, findet Dr. Karsten Schubert.

PrEP (Präexpositionsprophylaxe) ist ein relativ neues Mittel zur Prävention von HIV-Infektionen. HIV-negative Menschen nehmen antivirale Medikamente ein, die verhindern, dass der Kontakt mit dem Virus zu einer Infektion führt. Im Gegensatz zum Kondomgebrauch basiert dieses Präventionsverfahren auf Medikamenten und nicht auf einer Verhaltensänderung. Aus der Perspektive der Biopolitik fügt sie sich in einen größeren Trend in Richtung Medikalisierung, des Anstiegs der Macht der Pharmaindustrie und der Reglementierung des Risikos ein. Sexuelles Verhalten ist das Ergebnis der Subjektivierung, des Prozesses, durch den (...) soziale Normen Subjekte und ihre Wünsche bilden. Die Medikalisierung von schwulem Sex durch PrEP verändert die sexuelle Subjektivierung und geht daher mit einer Veränderung der Praktiken von schwulem Sex einher. Nach einer kurzen Erläuterung der medizinischen Besonderheiten und der Geschichte von PrEP (1) vereint dieser Artikel eine Rekonstruktion zeitgenössischer theoretischer Ansätze zur Biopolitik im Zusammenhang mit PrEP (2) mit einer Darstellung aktueller politischer Debatten um PrEP (3). Die Untersuchung zeigt, dass sich Gouvernementalitätsstudien und die Italienische Theorie auf repressive Machtverhältnisse konzentrieren und daher die Komplexität der Debatte nicht berücksichtigen können, die sich aus der Subjektivität und Handlungsfähigkeit verschiedener beteiligter Akteure, insbesondere schwuler PrEP-Aktivisten, ergibt. Dennoch werden Interpretationen von PrEP als repressiver Macht auch von einigen Akteuren in der politischen Debatte um PrEP genutzt, meist ohne ausdrücklichen Bezug zur biopolitischen Theorie. Nikolas Roses und Paul Rabinows differenziertes Konzept der Biopolitik bietet einige Ansätze wie diejenigen der biopolitischen Bürgerschaft und der somatischen Ethik, um die Debatte um PrEP und die damit verbundenen komplexen Verhandlungen über Sexualität zu beschreiben. Ausgehend von diesen Ideen entwickle ich ein neues Konzept der ‚demokratischen Biopolitik‘ von PrEP, die eine weitere Demokratisierung der Sexualität im biopolitischen Zeitalter ermöglicht. (shrink)

BackgroundFew studies have examined factors associated with willingness of people living with HIV to participate in HIV treatment clinical trials in Sub-Saharan Africa. We assessed the factors associated with participation of PLHIV in HIV treatment clinical trials research at a large urban clinical and research facility in Uganda.MethodsA mixed methods study was conducted at the Infectious Diseases Institute, adult HIV clinic between July 2016 and January 2017. Data were collected using structured questionnaires, focused group discussions with respondents categorised as either (...) participated or never participated in clinical trials and key informant interviews with IDI staff. A generalized linear model with a logit link function was used for multivariate analyses while the qualitative data were summarized using a thematic approach.ResultsWe enrolled a total of 202 and analysed 151 participants, 77 of whom were male with mean age of 41 years. The majority 127 expressed willingness to participate in treatment clinical trials if given an opportunity. At bivariate analysis, willingness to participate was significantly associated with respondents’ perception of a satisfactory compensation package, special status accorded and belief that their health status would improve while on the clinical trial. At multivariate analysis, a satisfactory compensation package and special status accorded in clinical trials remained significant. The qualitative data analysis confirmed these findings as participants valued the privilege of jumping the clinic waiting queues and spending less time in clinic, the wide range of free tests offered to trial participants, unrestricted access to senior physicians and regular communication from study team. Additionally, free meals offered during clinic visits meant that participants were not in a hurry to go back home. Barriers to participation included the perception that new drugs were being tested on them, fear of side effects like treatment failure and the uncertainty about privacy of their data.ConclusionWe found overwhelming willingness to participate in HIV treatment clinical trials. This was largely extrinsically influenced by the perceived material and health-related benefits. Investigators should pay attention to participants’ concerns for benefits which may override the need to understand study procedures and risks. (shrink)

This article uses the African communal concept of ubuntu to reflect on the ministry of Mashoko Christian Hospital, Zimbabwe, to people living with the human immunodeficiency virus and AIDS during the early days since the discovery of the disease. The main question this article seeks to answer is: from a perspective of the African philosophy of ubuntu, how did the ministry of MCH to PLWHA challenge the fear and judgemental attitudes towards the disease within the Churches of Christ in Zimbabwe? (...) This leads to another question: what should the churches learn from MCH’s response to HIV and AIDS? This article only focusses on trends in conduct and not on a detailed history of engaging HIV and AIDS. The significance of this article is to demonstrate the important role played by faith-based organisations in complementing the compassion and care often lacking in the official churches’ response to HIV and AIDS. (shrink)

The world’s first living donor liver transplant from an HIV-positive mother to her HIV-negative child, performed by our team in Johannesburg, South Africa (SA) in 2017, was necessitated by disease profile and health system challenges. In our country, we have a major shortage of donor organs, which compels us to consider innovative solutions to save lives. Simultaneously, the transition of the HIV pandemic, from a death sentence to a chronic illness with excellent survival on treatment required us to rethink our (...) policies regarding HIV infection and living donor liver transplantation. Although HIV infection in the donor is internationally considered an absolute contraindication for transplant to an HIV-negative recipient, there have been a very small number of unintentional transplants from HIV-positive deceased donors to HIV-negative recipients. These transplant recipients do well on antiretroviral medication and their graft survival is not compromised. We have had a number of HIV-positive parents in our setting express a desire to be living liver donors for their critically ill children. Declining these parents as living donors has become increasingly unjustifiable given the very small deceased donor pool in SA; and because many of these parents are virally suppressed and would otherwise fulfil our eligibility criteria as living donors. This paper discusses the evolution of HIV and transplantation in SA, highlights some of the primary ethical considerations for us when embarking on this case and considers the new ethical issues that have arisen since we undertook this transplant. (shrink)

Analyzing two harm reduction comics campaigns—one early in the AIDS crisis and one more recent, I explore tensions between queer safer sexual erotics and national discourses of sexual norms/deviation raised by Cindy Patton and William Haver at the height of AIDS discourse theory in 1996, approximately halfway between the comics. Using these theorists’ reflections on the history of AIDS activism/representation as a hinge, I explore the manifestation/transformation a decade later of the ethical, educational, and erotic issues they raise. Both foreground (...) the ways that HIV, safer sex, and/or eroticism pose difficulties for systems of linguistic and visual representation. Combining text and image, comics—a common harm reduction medium—epitomize this representational issue. While the GMHC addresses an immediate need for information about safer sex, Alex attempts to tackle the unrepresentability/unthinkability of safer and/or seropositive sex. Safer Sex Comix, while largely prioritizing directness above formal experimentation, employ strategies of transgressing the borders of the comics panel to emphasize a plethora of lower-risk sexual acts. The most visually inventive moments in Alex represent Alex’s feelings of unintelligbility post-diagnosis, but the comic restricts its representation of sex only to anal intercourse, and it proves unable to visualize alternative formulations of the erotic, turning to more normative narratives and images as earlier, visually explicit unsafe sexual encounters are replaced with more a/illusive representations post-conversion, literalizing the unrepresentability of seropositive erotic life. (shrink)

To help eliminate perinatal HIV transmission, the US Department of Health and Human Services recommends against breastfeeding for women living with HIV, regardless of viral load or combined antiretroviral therapy status. However, cART radically improves HIV prognosis and virtually eliminates perinatal transmission, and breastfeeding's health benefits are well-established. In this setting, pregnancy is increasing among American women with HIV, and a harm reduction approach to those who breastfeed despite extensive counseling is suggested. We assess the evidence and ethical justification for (...) current policy, with attention to pertinent racial and health disparities. We first review perinatal transmission and breastfeeding data relevant to US infants. We compare hypothetical risk of HIV transmission from breastmilk to increased mortality from sudden infant death syndrome, necrotizing enterocolitis and sepsis from avoiding breastfeeding, finding that benefits may outweigh risks if mothers maintain undetectable viral load on cART. We then review maternal health considerations. We conclude that avoidance of breastfeeding by women living with HIV may not maximize health outcomes and discuss our recommendation for revising national guidelines in light of autonomy, harm reduction and health inequities. (shrink)

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families’ experiences with HIV disclosure to children under 13 years old. Eight family members who have disclosed HIV to seropositive children were interviewed in‐depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members’ discourse highlighted two ways of knowing their own condition and (...) disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self‐care with autonomy. (shrink)

HIV stigma and fears surrounding the disease pose a challenge for public health interventions, particularly those that target pregnant women. In order to reduce stigma and improve the lives of vulnerable populations, researchers have recognized a need to integrate different types of support at various levels. To better inform HIV interventions, the current study draws on social-ecological and evolutionary theories of reproduction to predict stigma and fear of contracting HIV among pregnant women in South India. The aims of this study (...) were twofold: compare the social-ecological model to a modified maternal-fetal protection model and test a combined model that included strong predictors from each model. The study took place in 2008–2011 in Mysore District, Karnataka, India. Using data from a cross-sectional survey and biological indicators of health, we statistically modeled social-ecological variables representing individual, interpersonal, and community/institutional levels. Participants were 645 pregnant women. The social-ecological and combined models were the best-fitting models for HIV-related stigma, and the combined model was the best fit for HIV-related fear. Our findings suggest that combining reproductive life history factors along with individual, interpersonal, and community/institutional factors are significant indicators of HIV-related stigma and fear. Results of this study support a multifaceted approach to intervention development for HIV-related stigma and fear. The combined model in this study can be used as a predictive model for future research focused on HIV stigma and fear, with the intent that dual consideration of social-ecological and evolutionary theories will improve public health communication efforts. (shrink)

Despite abundant evidence associating CD38 overexpression and CD4 T cell depletion in HIV infection, no causal relation has been investigated. To address this issue, a series of mechanisms are proposed, supported by evidence from different fields, by which CD38 overexpression can facilitate CD4 T cell depletion in HIV infection. According to this model, increased catalytic activity of CD38 may reduce CD4 T cells’ cytoplasmic nicotin‐amide adenine dinucleotide (NAD), leading to a chronic Warburg effect. This will reduce mitochondrial function. Simultaneously, CD38's (...) catalytic products ADPR and cADPR may be transported to the cytoplasm, where they can activate calcium channels and increase cytoplasmic Ca2+ concentrations, further altering mitochondrial integrity. These mechanisms will decrease the viability and regenerative capacity of CD4 T cells. These hypotheses can be tested experimentally, and might reveal novel therapeutic targets. (shrink)

PrEP (Pre-Exposure Prophylaxis) is a relatively new drug-based HIV prevention technique and an important means to lower the HIV risk of gay men who are especially vulnerable to HIV. From the perspective of biopolitics, PrEP inscribes itself in a larger trend of medicalization and the rise of pharmapower. This article reconstructs and evaluates contemporary literature on biopolitical theory as it applies to PrEP, by bringing it in a dialogue with a mapping of the political debate on PrEP. As PrEP changes (...) sexual norms and subjectification, for example condom use and its meaning for gay subjectivity, it is highly contested. The article shows that the debate on PrEP can be best described with the concepts ‘sexual-somatic ethics’ and ‘democratic biopolitics’, which I develop based on the biopolitical approach of Nikolas Rose and Paul Rabinow. In contrast, interpretations of PrEP which are following governmentality studies or Italian Theory amount to either farfetched or trivial positions on PrEP, when seen in light of the political debate. Furthermore, the article is a contribution to the scholarship on gay subjectivity, highlighting how homophobia and homonormativity haunts gay sex even in liberal environments, and how PrEP can serve as an entry point for the destigmatization of gay sexuality and transformation of gay subjectivity. ‘Biopolitical democratization’ entails making explicit how medical technology and health care relates to sexual subjectification and ethics, to strengthen the voice of (potential) PrEP users in health politics, and to renegotiate the profit and power of Big Pharma. (shrink)

Client-provider relationships have significant effects on how individuals comprehend their life situation during chronic disease and illness. Yet, little is known about how frontline health care providers (HCPs) influence client’s identity formation through meaning-making with clients such as HIV-positive women living in poverty. This requires ethical consideration of the meanings made between clients and providers about client’s health and well-being, both individually and in the larger society. Health care providers (N = 15) and married women living with HIV (N = (...) 33) in north-central India engaged in separate intensive interviews providing narrative data which were analysed using a conceptual framework crossing Lipsky’s street-level bureaucracy theory (Lipsky 2010) with meaning-making processes. HCPs and women construct meanings of women’s role as caregivers that impact women’s sense of identity, health, and well-being. Findings indicate that despite being well-intentioned, HCPs inadvertently reinforce rigid gender norms and convey that women’s worth is tied to their familial caregiving role. HCPs’ discretionary advocacy may also reinforce societal images of women as incapable and needy, thereby harming them more generally. Attention to the gender-sensitive training of HIV health care providers may assure that discretion is ethically interrogated to promote gender equity and enhance women’s access to social welfare services. (shrink)

This article works across multiple disciplinary boundaries, especially queer theory, to examine critically the controversial, and often socially controlling, role of biomedical knowledge and interventions in the realm of human sexuality. It will attempt to situate scientific/medical discourses on sexuality historically, socially, and culturally in order to expose the ways in which “proper” sexual health in medical research and clinical practice has been conflated with prevailing social norms at particular historical junctures in the 20th and 21st centuries. How might the (...) relationship between clinical and cultural spheres be better engaged in biomedical knowledge and clinical practice in understanding sexual health, given the impact of homophobic and transphobic assumptions in the diagnostic histories of homosexuality and Gender Identity Disorder in Childhood, a new diagnostic category introduced into the DSM following the removal of homosexuality from the DSM-III? The article will argue further that biomedical knowledge is always already mediated through culture by analyzing normative racial, gender, class, and sexual ideologies that regulated early understandings of the epidemiology of the HIV/AIDS pandemic in the West and in the postcolonial world while informing global health policy on HIV/AIDS. The article concludes by examining the implications of medical education for both LGBTQI patients and medical professionals, for understanding gender and sexual rights as human rights, and for thinking about new kinds of interventions, contestations, and struggles to resist continued homophobic and transphobic assumptions in biomedical practice today and their ongoing effects in the everyday world. (shrink)

In 2015, the FDA revised its indefinite deferral policy towards MSM blood donors. I develop an empirical case for the revised policy and show why rights-based objections fail. I introduce and defend a distinction between “ordinary” and “exact” justification that accounts for the worries in the empirical case. I conclude that the FDA is committed to further revising the policy to let MSM donors with exact justification donate.

The ethics of safe sex in the gay community has, for many years, been focused on debates surrounding the responsibility (or lack thereof) regarding the use of condoms to prevent HIV transmission, once the only tool available. With the development of Truvada as a pre-exposure prophylaxis (PrEP) for HIV, for the first time in the history of the HIV/AIDS epidemic there is the potential to significantly reduce the risk of HIV transmission during sex without the use of condoms (without taking (...) into consideration ‘treatment as prevention’ with HIV-positive people). The introduction of PrEP necessitates a renewed discussion about the politics and ethics of safe sex for men who have sex with men (MSM). We present the arguments of authors who hold radically opposite positions with regard to the ethics of condom use by gay men, but who currently both criticize the use of PrEP. We offer a critique of their arguments and advance the position that the use of PrEP, even without condoms, can be acceptable and part of a safe sex ethics framework for MSM. (shrink)

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...) examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)

In 1987, Harry Reasoner of 60 Minutes questioned Dr. Selma Dritz about her search in the early 1980s for the origins of the deadly outbreak of AIDS in the United States. “It was the whodunit of the century, and I was born nosy,” she tells him. The title of the 60 Minutes piece was “Patient Zero” who Mr. Reasoner explains “was a man – a central victim and victimizer” in the spread of AIDS. Dr. Dritz, who had been the head (...) of infectious diseases in the San Francisco branch of the Centers for Disease Control and Prevention (CDC), recalled warning Patient Zero of the danger he posed to others. In her retelling, Mr. Dugas callously rebuffed her concerns, showed little remorse for infecting others, and concluded their interaction with “screw you.” Also interviewed was Randy Shilts whose book, And the Band Played On, identified Patient Zero as Gaëtan Dugas, a Canadian flight attendant. Mr. Shilts explained that Mr. Dugas constituted what epidemiologists today call a superspreader – someone with unlimited ability to infect others and “speed this disease into every corner of America.” The narrative of a villainous foreigner maliciously spreading a deadly epidemic culminated in an infamous New York Post headline condemning Mr. Dugas as “THE MAN WHO GAVE US AIDS.” The story unraveled upon closer inspection. In 1984, the CDC had indeed identified a “Patient O” who had sexual connections with other AIDS patients, but the “O” stood for “Outside” California. Nowhere in the study is “Patient O” identified as “Patient Zero” -- i.e., the person who introduced the virus in America. In 2007, an article in the Proceedings of the National Academy of Sciences concluded that HIV traveled from Africa to Haiti and then on to the US sometime in 1969, many years before Mr. Dugas became infected. On October 26th of this year, the story was conclusively debunked in a study published in Nature. The authors “recovered the HIV-1 genome from the individual known as ‘Patient O’ and found neither biological nor historical evidence that he was the primary case in the US….” The mainstream media rediscovered the story with the New York Times writing that “the alleged ‘Patient Zero’ of the American AIDS epidemic – a French Canadian flight attendant named Gaëtan Dugas, who died of AIDS in 1984 – was exonerated last week.” Dr. Dritz’s description of the epidemic’s origins as a “whodunit,” as well as Mr. Reasoner’s characterization of Mr. Dugas as a “victimizer,” embody culpable language, reflecting the difficulties of balancing the need to identify “index cases” as they are known in epidemiology with the ethical considerations of patient privacy and justice. As discussed by Ronald Bayer and Amy Fairchild in The Genesis of Public Health Ethics, the AIDS epidemic triggered a rethinking of ethics in public health. Hard fought battles for privacy and civil liberties had been won by the gay community, and the traditional epidemiological methods of mandatory case reporting by name, contact investigation and quarantine were perceived as threats to those gains. Consequently, public health measures emphasized education to change cultural behavior, the protection of individual privacy, and a rejection of coercive measures in favor of voluntary testing and counselling of those infected and at risk. Richard McKay, a co-author of the Nature study, has questioned whether the notion of a “patient zero” is itself a fallacy that overshadows structural factors that contribute to the spread of disease such as cultural inequalities and barriers to health care and education. Containing an epidemic is far more complex than hunting down the person who may have spread the disease initially. David Heymann, an infectious disease epidemiologist at the London School of Hygiene and Tropical Medicine, confirms that locating a patient zero is only useful if they are still alive and infecting others: “And more often than not, especially in large disease outbreaks, they’re not.” The modern healthcare response to epidemics aims to respectfully and ethically limit exposure and, when necessary, alter societal behaviors that may spread disease, but the Gaëtan Dugas case demonstrates that the media and the public may focus unduly on blaming the behavior of individuals. The overwhelming media attention on Dr. Craig Spencer and nurse Kaci Hickox during the Ebola crisis are more recent examples. Many also believe that policymakers have over-reacted to the public’s fears of the individual, malicious AIDS infector: 32 states have criminalized the spread of HIV. The search and public identification of a “patient zero” risks stigmatizing and traumatizing individuals, and alienating those who may be infected from coming forward. The exoneration of Patient O is a reminder that the management of an epidemic must be met with a determination to protect the privacy, liberty and just treatment of individual patients. References 1) Dritz, Selma. “Patient Zero.” Interview with Harry Reasoner. 60 Minutes. CBS. November 15, 1987. 2) Rothman, Kenneth J., et al. Modern Epidemiology, 3rd Edition. (Philadelphia: Lippincott, Williams & Wilkins) 2008, 561. 3) Shilts, Randy. “Patient Zero.” Interview with Harry Reasoner. 60 Minutes. CBS. November 15, 1987. 4) McKay, Ricard A., “Patient Zero”:The Absence of a Patient’s View of the Early North American AIDS Epidemic,” Bull Hist Med. 2014 Spring : 161-194. doi: 10.1353/bhm.2014.0005 5) Auerbach, David M., et al., “Cluster of Cases of the Acquired Immune Deficiency Syndrome: Patients Linked by Sexual Contact.” The American Journal of Medicine 76, (March 1984) 487-92. 6) Thomas, M. et al. “Evolution The emergence of HIV/AIDS in the Americas and beyond“ Proc Natl Acad Sci 2007 Nov 20; 104(47): 18566–18570. Published online 2007 Oct 31. 7) Worobey, Michael, et al. “1970s and ‘Patient O’ HIV-1 Genomes Illuminate Early HIV/AIDS History in North America.” Nature 539, 98-101. 26 October 2016. 8) McNeil, Donald G., “H.I.V. Arrived in the U.S. Long Before ‘Patient Zero’”. New York Times, October 26, 2016. Mr. McNeil wrote a second article addressing the ethical issues. “The Ethics of Hunting Down ‘Patient Zero’” New York Times, October 29, 2016. 9) Bayer R1, Fairchild AL. “The Genesis of Public Health Ethics.” Bioethics. 2004 Nov;18(6):473-92.xi Ibid, 478 10) Bayer R1, Fairchild AL. “The Genesis of Public Health Ethics.” Bioethics. 2004 Nov;18(6):473-92.xi Ibid, 478 11) CDC MMWR Ebola Transmission Linked to a Single Traditional Funeral Ceremony April 17, 2015/64 (14); 386-388) 12)Mohammadi, Dara. “Finding Patient Zero.” The Pharmaceutical Journal. 17 Jan 2015, Vol 294, No 7845, online DOI: 10/1211/PJ.2015.200067543. 13)"Prosecutions for HIV Exposure in the United States, 2008–2013". The Center for HIV Law & Policy, Positive Justice Project. Retrieved. (shrink)

The aim of the study was to determine how the health of people living with Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) is affected by social and structural factors conducive to non-adherence to antiretroviral treatment. In a qualitative study conducted at Victoria Hospital in Alice, a town in the Eastern Cape, South Africa, 23 isiXhosa-speaking participants (including both men and women) between the ages of 18 and 60 years were interviewed. Guided by the social-ecological framework of Bronfenbrenner (1979), (...) which is based on the notion that the health-seeking behaviour of people living with HIV/AIDS (PLWHA) is influenced by their social, institutional and physical environments, the analysis of the data identified the following themes conducive to non-adherence to antiretroviral treatment: food insecurity, financial constraints, poor service from health workers, unfair dismissal, fear of the consequences of disclosure, and rejection by church members. Based on these findings, and given that there is no single model of best practice that can appropriately address the various social and structural factors complicating the treatment of HIV/AIDS and hence the containing of the pandemic, the study suggests the need for not only supportive community initiatives, but a collaborative approach at both local and national level, and particularly in impoverished communities, by the appropriate departments of state to promote adherence to anti-retroviral treatment by making treatment and counselling facilities more accessible to PLWHA and educating communities about the implications and prevention of the disease. (shrink)