Just as there are key populations particularly vulnerable to HIV/AIDS, weighed down by inequality and stigma, so too are there key populations vulnerable to COVID-19 and the inevitable pandemics to come. A foreign policy to address ongoing and future pandemics must focus on putting the marginalized at the center, and prioritize building societal trust.
Any pandemic preparedness and response (PPR) policy that favors the privileged over the socially dispossessed is not just unjust but doomed to fail. Any US policy or new multilateral public health architecture will be judged in history by this standard.
THE MOST VULNERABLE
Key populations for HIV/AIDS include sex workers, men who have sex with men, transgender people, people who inject drugs, and people in prisons and other enclosed settings. While these populations are also key populations for COVID-19 and likely for future pandemics, all people who are disadvantaged by social systems are key populations in pandemics.
Socially vulnerable groups can be identified across the following dimensions: poverty, class, race, ethnicity, nationality, immigration status, religion, gender, language, literacy, household composition, housing access and quality, age, disability, and health and nutritional status. Groups within these categories are socially vulnerable due to societal stigma and marginalization. The barriers to care for people in these groups may be compounded by religio-cultural attitudes about health, which may conflict with dominant systems of thought. These aspects of marginalization limit these populations’ access to health and healthcare services.
In comparison to people who are privileged in our current social systems, the burden of COVID-19 morbidity and mortality in socially vulnerable groups has been and continues to be disproportionately high. Within the US, higher social vulnerability is associated with significantly higher COVID-19 morbidity and mortality. According to the CDC, areas with a higher percentage of socially vulnerable people were at higher risk of becoming COVID-19 hotspots. COVID-19 did not create these inequities; it exacerbated existing inequities in access to healthcare. The fact that many of the groups in low- and middle-income countries that are most vulnerable to HIV are also those most susceptible to COVID-19 is further evidence of the social inequities embedded and embodied in health care and crises. Future pandemics will similarly deepen social fissures and inequalities unless PPR incorporates measures to combat them.
Stigma and discrimination against socially vulnerable populations have worsened health outcomes throughout the COVID-19 pandemic. Pre-existing stigmas have been exacerbated by new stigmas and discrimination created by COVID-19 myths and disinformation, leading to increased reports of violence and poverty among sex workers and increased reports of police harassment and community violence towards transgender women. The effects of additive stigma and discrimination were worsened by the fact that health services and social protections in COVID-19 became less accessible for the most marginalized, resulting in increased fear and experiences of violence with few repercussions for perpetrators.
Lockdowns led to the loss of livelihoods and access to healthcare, which increased existing vulnerabilities. The secondary effects of COVID-19 on health can be seen beyond HIV/AIDS key populations. For example, domestic violence has spiked across the globe. Advocates fear, “The knock-on impact of the pandemic could result in a vicious cycle that will…stall progress toward gender equality and perpetuate intergenerational cycles of poverty,” as Grace Ngulube, a 24-year-old from Malawi, and Global Fund Youth Council member described.
PREPARING FOR THE NEXT PANDEMIC
We must reduce stigma and discrimination before the next pandemic and create measures to prevent and respond to stigma and discrimination during the next pandemic. “Governmental social protection mechanisms…in the developing world of Africa, Latin America, and Asia…have often rarely gone beyond immediate poverty relief, to build longer-term resilience to shocks and crises,” according to Becca Asaki and Shannon Hayes, advocates from the Huairou Commission, a coalition of women’s empowerment organizations, in an article on how grassroots women’s groups transform social protection. Such short-sighted strategies are flawed, and policies and new multilateral architectures that continue in this tradition will lead to repetition of the same poor outcomes we have seen previously. Going forward, robust social measures that build on lessons learned in previous epidemics and pandemics must be incorporated into PPR policies.
The implementation of social protections has had marked impacts on HIV prevention and treatment. Stigmas and discrimination against HIV/AIDS key populations and people living with HIV have hampered efforts to stop the epidemic. According to James Hargreaves and Calum Davey, in a study highlighting key lessons from the HIV pandemic for the COVID-19 crisis, what was needed to prevent similar difficulties in controlling the pandemic was an innovative, “multidisciplinary effort…to design, characterize, and evaluate interventions that can shape behavior. Innovative elements of the HIV response include structured community mobilization, targeted social protection, and differentiated health-care delivery.” These strategies can and should be adapted for global PPR.
HIV/AIDS and COVID-19 expose longstanding shortcomings in access to health and illuminate lessons for a foreign policy to better prepare for and respond to future pandemics.
The experience of the Global Fund to Fight AIDS, Tuberculosis and Malaria is instructive. The Global Fund has documented its carefully tailored programs to address the needs of the most vulnerable or potentially stigmatized groups. Love Yourself, an NGO in the Philippines, and Competent Clinics in South Africa provide specialized prevention and care services for HIV to men who have sex with men. These programs address issues of inequitable access to healthcare and stigma. In Madagascar and Kenya, community members play an instrumental role in designing more effective interventions. With the help of the Global Fund, both countries have established working groups to bring together community leaders, government officials, NGOs, and key population representatives to make health program decisions. In the Dominican Republic, Peru, and Indonesia, members of key populations accompany medical professionals to provide targeted counseling services and ensure respectful care at HIV testing centers in Global Fund supported programs.
Elevating the voices of those affected in decision-making is a key step. As a study of effective social protection for women in poverty in Kenya, Brazil, and Peru found, “The first step in this is for governments and development agencies to recognize grassroots organizations and networks as equal stakeholders in the social protection development process, by bringing them into the agenda-setting and policymaking process.” People who are stigmatized often cannot access government-established protections and resources, even though often they need them most. Informal mechanisms and those who provide them are essential partners in reducing the harm caused by social vulnerability to pandemics.
In El Salvador, the Global Fund supported clinics that have provided literacy lessons, as well as HIV treatment and prevention resources, to sex workers. With the massive global challenge of undetected tuberculosis cases, the Global Fund has worked to increase detection of cases by cultivating relationships with community health workers in Kenya, such as in the underserved Kibera neighborhood in Nairobi. Such programs aim to reduce disease transmission in potentially vulnerable populations while simultaneously combating social exclusion, stigma, and discrimination to empower marginalized communities to advocate for their own health.
LESSONS ON EQUITY FOR PANDEMIC PREPAREDNESS
Laws, policies, and norms must ensure that they do not perpetuate or create new forms of stigma. The fact that criminalization contributes to stigma has been well established– for example, the criminalization of HIV has been shown to be tied to the worsening of stigma. Thus, to avoid the creation of additional stigma during COVID-19, UNAIDS recommended that breaking pandemic restrictions should not be enforced through punitive measures. However, policy changes such as these must be supported by the wider social environment — if these policies are not culturally accepted, they will not be enforced as intended: laws may be changed, but without wider changes in norms, attitudes, and social structures which keep marginalized people vulnerable, overturned discriminatory laws will continue to be enforced in practice. Most critically to all of these processes, socially vulnerable communities themselves should be central in the planning of PPR to ensure that all potential dimensions of stigma are addressed. In addition, including marginalized communities in policy-making contributes to their agency and overall inclusion in the political sphere. This will “build trust, ensure suitability and effectiveness, and to avoid indirect or unintended harms and ensure the frequent sharing of information,” according to UNAIDS.
HIV/AIDS and COVID-19 expose longstanding shortcomings in access to health and illuminate lessons for a foreign policy to better prepare for and respond to future variants of COVID-19 and other pandemics. Putting socially vulnerable groups at the center of any PPR policy and architecture, and building on the elements of HIV response which have proven to help earn the trust of communities will be a key measure of success. The community engagement, adaptability, resilience, and innovation of HIV response systems (such as those supported by the President’s Emergency Plan for AIDS Relief) can be leveraged for stronger health systems and pandemic preparedness.
Only by prioritizing equity and by PPR architectures building upon best practices of existing institutions (e.g., in Global Fund investments prioritizing community-level agency) can we be prepared to protect ourselves against the next pandemic. Until policymaking related to preparing for and responding to new pandemics learns from the experiences of the socially vulnerable in past and present pandemics, historical inequities in pandemic morbidity and mortality will persist and worsen. It is long overdue for policy mechanisms to massively scale up proven community-empowering methods in order to break away from the cycle of violence and willful neglect of society’s most dispossessed.
Mark P. Lagon is Chief Policy Officer at Friends of the Global Fight Against AIDS, Tuberculosis and Malaria and former U.S. Ambassador-At-Large to Combat Human Trafficking and President of Freedom House, and Chloe Nickel is a recent graduate with a Master of Public Health in Global Health Policy from The George Washington University Milken Institute School of Public Health.