Courtenay Sprague
The “HIV/AIDS pandemic has marked all of our lives, and I suspect we share a sense that it has led us and the world forward in some way,” wrote the late Dr Jonathan Mann, health and human rights luminary, field-builder, and founder of the Health and Human Rights Journal.[1] In 1996, he posed the question, “What are the transformative possibilities of the AIDS pandemic?”[2] Every year December 1 invites us to pause to consider opportunities to further advance the health and human rights of those living with or at risk of acquiring HIV. What has the HIV epidemic taught us that we need to keep at the center as we move into 2021 and beyond? At this juncture, when all of our lives have been upended by a different pandemic, COVID-19, it seems appropriate to reflect on this question anew. Can we harness what we have already learned, including lessons that may also be relevant for COVID-19, to further transform the HIV response?
Embracing health as a right, public good, and normative social goal
The latest available global data from UNAIDS (2019) continue to tell the ‘big’ story of global health: that opportunities to be healthy are highly unequal.[3] In 2019, 690,000 people died of AIDS-related illnesses, bringing the total global AIDS-related deaths to an astonishing 32.7 million.[4] HIV continues to be the leading cause of death for women and adolescent girls aged 15–49 years, worldwide.[5] Yet HIV is fully preventable and treatable, demonstrating the need to shift the paradigm to recognise health as a human right and public good, not a market-based commodity. This shift fully aligns with the global commitment to achieve universal health coverage (UHC), one of the sustainable development goals, and it debunks myths that UHC is more expensive than allowing people to bear catastrophic financial burdens to pay for health care.[6] This is equally relevant for COVID-19. Achieving this paradigm shift requires education, political will, leadership, and changes in policy. As policy is a reflection of social values, can new leadership in the United States and other countries shift ideology, policies, and actions to embrace rights-based approaches, to protect and advance public health?
Unequal vulnerability to HIV is shaped by social-structural determinants
In 2019, 1.7 million people were newly infected with HIV, contributing to a total of 38 million people living with HIV, worldwide.[7] Two-thirds of new infections occurred in sub-Saharan Africa; one-third among young people aged 15 to 24 years.[8] Key populations and vulnerable groups—the socially marginalized and criminalized, detained and incarcerated, the excluded, including transgender and poorer populations—continue to bear a disproportionate burden and risk of HIV across settings. Notably, the same is true for COVID-19. At the global level, women and girls accounted for roughly 48% of all new HIV infections in 2019, and 59% of all new HIV infections in sub-Saharan Africa, with one in four new infections occurring in adolescent girls and young women.[9] To advance the HIV response, the structural inequalities that result in unequal risk of HIV acquisition must be addressed.
Social determinants of health (SDH) are “the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life,” including political and economic structures. [10] This includes structural racism, defined as “the ways in which societies foster discrimination through mutually reinforcing inequitable systems,” which also determines resource distributions that affect people’s opportunities to be healthy.[11] Racism is a political determinant of health, where laws and policies, such as police abuse and criminalization of substance use and mental health, generate vulnerability to HIV, serve as barriers to prevention, treatment and support, and contribute to health inequities. In the United States, African Americans and Hispanic/Latino populations account for an estimated 69% of new HIV diagnoses.[12] Centers for Disease Control stated in 2016: “If current HIV diagnoses rates persist, about 1 in 2 black men who have sex with men (MSM) and 1 in 4 Latino MSM in the United States will be diagnosed with HIV during their lifetime.”[13] The US South (comprising 17 states) has the highest HIV-related mortality, poorer health infrastructure, a lower tax base, low rates of health spending, higher numbers of uninsured, fewer numbers of HIV providers, high rates of incarceration and HIV stigma.[14] These are all SDH that are increasingly apparent in relation to COVID-19.[15]
In sub-Saharan Africa, a robust evidence base has demonstrated over decades that gender inequalities encompassing women’s lower social position, adverse social-cultural gender norms and practices, low socio-economic status and low participation in the economy combine with risk environments—age-disparate sexual partnerships, early sexual debut—and with exposure to gender-based violence and sexual abuse, to undergird their HIV acquisition.[16] These complexities are predicated on social structures that enforce women’s inequality, undermine their opportunities to be healthy, and limit their capabilities and rights fulfillments.
SDH, in settings like the United States, sub-Saharan Africa, and elsewhere, are responsible for most health inequities and poor outcomes.[17] Because they have a social basis, by definition, health inequities are unfair, unjust, and modifiable.[18] Yet, the HIV community has continued to over-emphasize HIV testing and treatment—a largely biomedical response to an epidemic fueled by social factors, including discrimination and stigma. In the United States, in response to the Trump Administration’s announcement of ending HIV by 2030, the National Institute of Allergy and Infectious Diseases released a four-point plan predicated on testing and treatment.[19] Testing and treatment are necessary but not sufficient. Can the global community put evidence into action, using appropriate, culturally-tailored policies and interventions that overturn health inequities? Can responses engage with social institutions, structures, and policies, from fair housing and employment to stigma-reduction and gender-transformative interventions?
The HIV response has always been grounded in social justice movements
A crucial lesson to recall in any stocktaking is that social justice movements galvanized effective action to underpin the global health and human rights response on HIV—not a pill or vaccine. While medical advances are important, the power of the global HIV response rests on a rights-based, social justice foundation. Treatment would not have become accessible without civil society action.
The urgent need for a robust response to the HIV crisis in the face of mounting deaths and government neglect forged the connections between human rights and public health. From the beginning, contexts of deep stigma and discrimination against gay, lesbian, bisexual, transgender, and criminalized communities (sex workers, persons who used drugs, and incarcerated populations) were the norm around the world. The marginalization of poorer populations with HIV, government delays and inaction jeopardized the rights, dignity, and survival of those living with the virus. In concert with other actors like health and medical professionals, civil society campaigns led by ACT UP (US), the Treatment Action Campaign (South Africa), The AIDS Support Organization (Uganda), to name only a few, marshalled support at the grassroots, while calling on government officials and international stakeholders to advance lifesaving treatment, funding and greater health and social protection in different settings.[20] The later global health strategy to engage with human rights concerns, first led by WHO, was in part prompted by the discrimination leveled against those with HIV that undermined HIV prevention and treatment.[21]
As civil society spaces are shrinking, this lesson serves as a timely reminder. The role of civil society in shared health governance remains important as we consider the possibility of other social movements, including the Black Lives Matter movement, to address pervasive, structural racism that undermines health and rights.
Jonathan Mann believed that HIV calls us to “transcend our inherited patterns of thought or response to others.”[22] Epidemics, including HIV and COVID-19, as well as structural racism embedded in our global societies, force us to the mirror. They press us to come to terms with our own mortality, our shared humanity, and responsibility. They invite us to look inward and ask ourselves, “how are we to live?” Can we leverage our own roles and possibilities to create social-structural change in the power structure, in research and policy networks, in organizations and institutions in which we take part, to transform, not only our epidemic responses, but our societies, and even ourselves?
Courtenay Sprague, MA, PhD, is an Associate Professor of Global Health in the Department of Conflict Resolution, Human Security and Global Governance at the McCormack Graduate School of Policy and Global Studies; the Department of Nursing, College of Nursing and Health Sciences, University of Massachusetts Boston, USA; and the Wits Reproductive Health and HIV Institute, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
References
[1] J. Mann, “The transformative potential of the HIV/AIDS Pandemic,” Reproductive Health Matters, 7/14 (1999), p. 164.
[2] Ibid, p. 171.
[3] UNAIDS, UNAIDS data 2020. (New York: UNAIDS, 2020), available at: https://www.unaids.org/en/resources/documents/2020/unaids-data
[4] Ibid.
[5] UNAIDS, “Women and HIV—A spotlight on adolescent girls and young women,” available at: https://www.unaids.org/sites/default/files/media_asset/2019_women-and-hiv_en.pdf.
[6] Lancet editorial, “The struggle for universal health coverage,” 380 (2012), p. 859.
[7] UNAIDS (see note 3).
[8] UNAIDS (see note 3).
[9] UNAIDS (see note 3).
[10] WHO, “Social determinants of health,” https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1.
[11] L. E. Egede and R. J. Walker, “Structural Racism, Social Risk Factors, and Covid-19: A Dangerous Convergence for Black Americans,” New England Journal of Medicine 383/17 (2020), p. e77.
[12] White House Office of National AIDS Policy, National HIV/AIDS strategy for the United States updated to 2020 (Washington, DC: White House Office of National AIDS Policy).
[13] US Centers for Disease Control and Prevention. “Half of black gay men and a quarter of Latino gay men projected to be diagnosed within their lifetime” [press release], February 23, 2016, p. 1.
[14] C. Sprague, S. M. Brown, S. Simon, L. M. McMahan, I. Kassiel, and D. Konkle-Parker, “Towards ending the US HIV epidemic by 2030: Understanding social determinants of health and HIV in Mississippi, Global Public Health 15/1 (2020): 31-51.
[15] L.E. Egede and R.J. Walker (see note 11).
[16] C. Sprague, Gender and HIV in South Africa: Advancing women’s health and capabilities. (London: Palgrave Macmillan, 2018), pp. 35-84.
[17] O. Solar and A. Irwin, A conceptual framework for action on the social determinants of health: Discussion Paper for the Commission on Social Determinants of Health No. 2 (Geneva: WHO, 2007).
[18] P. Braveman, and S. Gruskin, ‘Defining equity in health,” Journal of Epidemiology and Community Health,” 57/4 (2003), 254–258.
[19] A.S. Fauci, R.R. Redfield, G. Sigounas, M.D. Weahkee, and B.P. Giroir, B. P. “Ending the HIV epidemic: A plan for the United States,” Journal of American Medical Association, 321(9) (2019), pp. 844–845.
[20] HIV.gov, “A Timeline of HIV and AIDS,” https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline.
[21] S. Gruskin, E. J. Mills, and D. Tarantola, “History, Principles and Practice of Human Rights,” Lancet 370 (2007), pp. 449-455.
[22] J. Mann (see note 1), p. 171.