Review of Living With HIV in Post‐Crisis Times: Beyond the Endgame By David A. B. Murray, ed., Lanham: Lexington Books. 2021. 243 pp.

Corliss D. Heath

Shaping A Vision Through Empowerment (SAVE), Inc.

Living with HIV in Post-Crisis Times critiques the global discourses of “end of HIV/AIDS” paradigms and the re-classification of its medical status while assessing models of care to promote positive living among people with HIV. The nine essays and conclusion examine how people within various communities and organizations are positioned differently to advocate for quality health and well-being. With a focus on management of treatment and care among people living with HIV (PLWH), the change in the biomedical status of HIV from terminal to chronic illness, normalizing HIV as an everyday way of living, and challenging assumptions of standardizing care for positive living, the volume’s broader three interrelated themes are: questioning the economic, political, and social responses to “end of crisis” narratives; considering the meaning and overall impact of renaming HIV as a chronic illness; and assessing “positive living” standards of care or practices for maintaining one’s health over the course of time.

The book is divided into two parts. Part I: Fantastic Conceits and How to Mind Them: Managing PLHIV in “Post-Crisis” Times focuses on the management of care for people within what authors call a “post-crisis time” (i.e., the time existing after the HIV crisis) at various levels, including organizational, system, and individual or client levels. Additionally, chapters in this section assess the reframing of HIV’s biomedical status based on the availability and effectiveness of medication and other interventions, the impact and how it’s been addressed and managed socially, politically, and economically for PLWH.

Chapter 1 by Vaibhav Saria looks at how poverty, gender, and sexuality intersect to influence outcomes of poor and migrant PLWH in India. Saria contends that HIV in India is a continuous cycle governed by the same failures and mismanagement of previous and ongoing epidemics like famine and tuberculosis and consequently, there is no end game. Likewise, inequality, poverty and difficulties finding work, stigma, and discrimination in clinics, to name a few, interfere with hijras (translated as Indian transgender people) and PLWH accessing antiretroviral treatments (ARTs) and other care. The political impacts of “end of crisis” narratives are addressed through Wesam Hassan’s analysis of the Egyptian government’s claim and marketing of a “so-called” HIV cure device after the 2011 Egyptian revolution in Chapter 2. An additional concern for Hassan is how Egyptian PLWH responded to the use of the device. This chapter reveals the importance of power and authority in negotiating and governing one’s health care realities. Walsh Lang’s Chapter 3 provides observations of reinforced HIV stigma in rehabilitative treatments for children with HIV accessing care in Ugandan clinics, particularly in what is identified as a “post-crisis” HIV era. Here, Lang talks about the importance of disclosure, including children as active agents living with HIV, and having responsible caregivers for children with HIV. It is evident that when the aforementioned are not in place, the system fails. In Chapter 4, Claudia Ordóñez examines the South African Public Health System struggling to manage HIV from the perspective of a Western medical framework and barriers to acquiring support for coordination of a medical plural health system between biomedicine and Traditional African Medicine (TAM). The recognition and credence of the cultural relevance and inclusion of this medical plural system will create and sustain effective HIV interventions among South African patients. Oumy Thiongane and Janice Graham in Chapter 5 explore the management of living with HIV in relation to other epidemics. Specifically, they assess the impact of the Ebola epidemic for PLWH and the implications of employing randomized clinical trials (CATEbola) for Ebola vaccines for immunocompromised PLWH in Canada and West Africa. Here it is important to ask: are the overall health aspects as well as social, political, biological, gender, economic, and geographic effects considered when enrolling individuals in an intervention of what the authors call “dueling viruses” (12)?

In Part II: Always Never Normal: Positive Living in “Post-Crisis” Times authors examine the power, control, and life experiences of those living with HIV. This is done to construct a wholistic assessment and understanding of the varied challenges, barriers, successes, and lessons of “differently positioned individuals, organizations, and communities” (7) to evaluate how PLWH from various backgrounds and social locations, navigate everyday life.

Some chapters focus on normalizing life and explain how for many PLWH “life is anything but normal” (9). Pamela Runestad (Chapter 6) assesses the meaning of normal through her examination of Japanese men with HIV striving to become productive citizens in the face of discrimination and negative beliefs about HIV as they challenge prescriptive definitions of gendered Japanese people. David Murray (Chapter 7) evaluates the perception of the “end of crisis” discourse through highlights of conversations with older gay white men with HIV in Toronto, Canada. All considered long-term survivors of HIV (e.g., living with HIV more than 20 years and over age 55), he explores their attitudes towards long-term HIV care and treatment as they reflect on their experiences of managing their now “chronic illness,” which includes several challenges associated with age-onset conditions to not receiving any support from HIV service organizations in Toronto. Jallicia Jolly’s ethnography in Chapter 8 on Jamaican women with HIV highlights the women’s intimate and political experiences living in Kingston, Jamaica. In it, she describes how the women organize to develop, advocate, and foster the growth and support of HIV care strategies “through women-centered networks” (120). This kind of mobilization is something I would like to see more of among Black women with HIV in the United States. Stephen Schensul (Chapter 9) concentrates on ongoing perceptions of contributing stress and stigma associated with alcoholism among working class men living with HIV in Mumbai, India. He contends that ARTs often meet the physical need associated with HIV. However, substance use, mental health, and other social needs remain unmet among the men.

Across the volume, the authors addressed multiple issues within the political, economic, social, biomedical, and cultural spheres to present insights on global discourse of “end of HIV” narratives among people with HIV. They tackle race (Jolly and Ordóñez), gender (Runestad, Schensul, and Jolly), income and poverty (Schensul, Saria, Hassan, Thiongane. and Graham), age (Murray and Walsh), and sexuality (Saria and Murray) as interconnected factors that impact one’s HIV status and living positive. Likewise cultural dynamics, stigma, and interpretations about HIV continue to influence both the “end of crisis” discourse and treatment for many of the most vulnerable populations. Moreover, it is apparent from the book that having a normal life ceases to exist for many PLWH. This makes me question how does one define normal and who is defining it?

Robert Lorway concludes the book by arguing that over the course of a 40-year era of HIV not much has changed in global efforts to confront discrimination and stigma, dismantle inequality and poverty, and provide equitable and quality HIV care and treatment. He raises the question about HIV optimism of an “AIDS free future” and notions of eradication as he reflects on the chapters’ critical analysis of global biomedical health interventions that are sometimes used for political gain. Additionally, Lorway speaks about the importance of understanding HIV chronicity that undergirds much of the “end of crisis” discourse. His notions echo that of Sangararamoorthy (2018) who suggests reorienting “the logic of HIV chronicity to one that regards HIV as a continual crisis as it is lived and experienced for many around the world” (3).

Overall, Living with HIV in Post-Crisis Times approaches the end of HIV epidemic from a critical social science perspective (7) and challenges one to rethink how to manage HIV as a continuing epidemic or chronic disease on local, national, and global levels. However, as we engage in this “end of HIV/AIDS” conversation, we must include epidemiologic and biomedical data to inform interpretations and conclusions to obtain contextualized and complete understandings of the “end of crisis” narratives. It is important to note that “end of HIV/AIDS” does not mean or equate to the eradication or elimination of HIV and AIDS. It refers to ending the HIV epidemic in epidemiological terms where the number of new HIV cases is less than the number of AIDS-related deaths (Eisenger & Fauci, 2018). Moreover, HIV elimination cannot be a one-size-fit all model among social groups and populations, because the virus is not distributed equally among social groups and populations. The “end of HIV crisis” will require an implementation of combined and comprehensive biomedical, social, and behavioral interventions within a broader social, economic, cultural, geographic, and political context at various levels. As stated in many of the chapters, inequalities such as race, gender, sex, age, sexuality, geography, and class impact PLWH in various ways. Therefore, we must continue to move beyond naming and documenting said inequalities to operationalizing, measuring, and analyzing how the inequalities clearly influence outcomes and quality of life of PLWH to eliminate disparities (Auerbach & Dube, 2022). HIV care and treatment is more than CD4 counts and viral loads. Interventions must focus on social, mental, political, economic, cultural, and geographic aspects to address inequalities. Additionally, like in Jolly’s chapter, it is important to include people with lived experience in the programmatic and policy funding decision making, and actions that impact their quality of life, care, and treatment.

If one could ask for an additional contribution to this volume, it would be a piece focusing on Black women with HIV living in the United States. As a Black female medical anthropologist and public health practitioner, I could not help but notice the absence of US Black women from the conversation. Black women in the United States have an incidence rate 11 times that of White women and four times that of Hispanic/Latina women (CDC, 2021). Black women with HIV in the United States have worse health-related outcomes than women of other racial and ethnic backgrounds and face significant barriers to accessing, engaging, and staying in medical care. Murray acknowledges that the book does not cover many locations and populations impacted by HIV during the span of four decades (10). However, Black women in the United States have been over-looked, under supported and their voices are commonly absent from the HIV discourse.

The volume focuses on important aspects of HIV treatment research that undergraduate and graduate medical anthropology students as well as public health and medical students can learn from. It is necessary for health disparities and health care access course curriculum and for teaching development of equitable, inclusive and culturally responsive interventions for people with HIV.

From a theoretical standpoint, “the end of crisis” is achievable. There are effective and innovative interventions focusing on aging people with HIV, stigma reduction, adapting care to include cancer screenings, providers partnering with community organizations to provide social services (e.g., housing, employment, Intimate partner violence), and mental health support just to name a few. However, it requires work, committed partnerships, additional and sustainable resources to make available the already existing advances on local, regional, national, and global levels.

References

Auerbach, Judith D., and Karine Dubé. 2022. “Critical Social and Behavioral Sciences Perspectives on Ending the HIV Epidemic.” Current Opinion in HIV and AIDS 17(2): 37–39.

Centers for Disease Control and Prevention. HIV Diagnoses. 2021. Accessed October 2, 2023 Published August 18, 2022.

Eisinger, Robert W., and Anthony S. Fauci. 2018. “Ending the HIV/AIDS Pandemic.” Emerging Infectious Diseases 24(3): 413.

Sangaramoorthy, Thurka. 2018. “Chronicity, Crisis, and The ‘End of AIDS’.” Global Public Health 13(8): 982–996.