HIV-Related Stigma and Discrimination: New Insights for Effective Interventions From AIDS 2018

Stefan Baral, M.D., at AIDS 2018 in Amsterdam, the Netherlands.
International AIDS Society/Matthijs Immink

After more than 30 years, stigma and discrimination remain a significant HIV risk factor for key populations around the world and, for those already living with the virus, stigma directly and negatively impacts health outcomes. At AIDS 2018, the session "Antifragile: Strengthening the HIV Response Through Addressing Stigma and Discrimination" reviewed new developments in the effort to combat stigma and discrimination, including comparing the severity of stigma and discrimination among several key populations and reporting results from meta-analyses of interventions and effective anti-stigma programs. The implications of these studies were discussed as they relate to the development of ongoing efforts to reduce HIV-related stigma and discrimination around the globe.

Despite progress, the effects of HIV-related stigma continue to be felt across high-, middle-, and lower-income countries. Greater recognition exists of the complex relationships among stigma, human rights violations, and HIV risks, and the particularly severe impact of stigma on ethnic, racial, and sexual minorities, as well as sex workers. The criminalization of homosexuality and drug use compounds anti-stigma efforts and, in more rural parts of the globe, examples of stigma as old as the earliest days of the epidemic, such as stigmatization by health care providers, continue to be an issue.

Despite the rhetoric, according to the panelists, stigma remains an understudied social determinant of health in HIV. It is quantifiably measurable and is an actionable risk factor in HIV acquisition and transmission, impacting both the provision and uptake of services. There appear to be more similarities than differences in the prevalence of stigma among key populations around the world. And while there is a large amount of data on stigma for certain parts of the globe, a data paradox exists: the least data on stigma exists on the most stigmatized settings. In areas where the strength of the epidemic is strong, and where stigma is prominent, good data are lacking.

Measurement of stigma remains a vital concern. A review of validated and partly validated stigma metrics for key, at-risk populations was presented. In this analysis, 226 tools were validated; 29 were partly validated; and 294 were not validated (for a total of 549). Globally, this group of studies on key populations focused nearly exclusively on men who have sex with men (MSM). A very small portion (16) focused on MSM who were also sex workers, and 26 focused on sex workers alone. Ironically, given that drug use (especially injection drug use) is a major factor in HIV transmission, there were virtually no studies of stigma and its effects among this key population.

The construction of stigma is complex, and anti-stigma interventions must take this into account. Stefan Baral, M.D., with Johns Hopkins University, presented a cross-country analysis of intersectional stigma among MSM, including perceived stigma, enacted stigma, and anticipated stigma related to family, community, and the health system. Intersectional stigma draws on both intersectionality (i.e., dynamic intersection among social identities) and stigma (i.e., the process of othering a group of people in society). The data showed that HIV predicted stigma 18.9% of the time, but additional factors were critical and often overlooked as causes of HIV-related stigma. These included "ever used substance" (predicted 23.8%) and "was ever depressed" (19.1%).

Expressions of stigma in this analysis included a broad range of behaviors, such as family exclusion, rejection by friends, family gossip, verbal harassment, being afraid in public, being afraid to seek care, avoiding seeking care, poor treatment by health care workers, health care worker gossip, police not providing protection, blackmail, and even physical harm. Harassment and gossip were noted as important forms of enacted stigma that must be addressed, and intersecting identities were found to raise the risk of experiencing high stigma. MSM with depression, for example, had a higher risk of being stigmatized. These intersecting identities represent a critical target for all types of stigma reduction, particularly anticipated health care stigma.

A conceptual model for the construction of stigma experienced by gay, bisexual, and MSM based on data from Lesotho was presented, which documented many complex interactions. For example, the experience of stigma itself indirectly led to high-risk practices such as multiple partners, partner concurrency, and low rates of condom and lubricant use, by fueling both depression and the use of alcohol. Those, in turn, led to high-risk practices. Of course, stigma also had a direct effect on high-risk practices.

Related: Bias Is Everywhere: Uncovering HIV Prejudice to Improve Service Delivery

Another study was presented with data on how discrimination is experienced differently by MSM and transgender individuals. Examples of such stigma included being excluded from family gatherings; overhearing discriminatory remarks; feeling rejected by friends; being arrested, jailed, or beaten up; having ever been raped; feeling depressed in the last two weeks; or having recent unprotected receptive anal intercourse. Predictably, in every category, transgender individuals experienced greater stigma, and nearly 60% stated they had felt depressed in the last two weeks.

Panelists agreed that HIV-related stigma mitigation interventions integrating these multiple dimensions had the most impact. An analysis of 48 studies showed that the most effective interventions included multiple intervention strategies, multiple stigma domains, and multiple socioeconomic levels. For example, interventions can occur in the community with peer-based approaches, in clinical settings with the training of health care workers, and in post-clinical settings with peer-to-peer anonymous referrals. These interventions mitigate anticipated, perceived, and enacted stigma, which increases uptake of HIV services, adherence to antiretroviral treatment, condom use, and viral suppression.

Stigma by health care providers continues to be a problem in many parts of the world. An example of a facility-based staff training in Ghana was presented in which medical students participated in two days of workshops to create awareness of stigma in concrete terms, to understand and address fears of workplace HIV transmission, to provide sexual diversity education, and to build empathy and improve contact strategies. A five-day training of trainers was provided for health facility staff and clients, followed by a roll out of a two-day training for all levels of facility staff, with teams mixed by department and level of training. Finally, champion teams were formed in the facility to develop and implement stigma-reduction activities. This intervention produced a statistically significant improvement in stigma mitigation. Facility staff reported not only much-improved behavior towards clients (relative to prior years) but also a greater sense of collegiality among all levels of facility staff.

Any discussion of stigma must include the law. The panel focused on the significance of the law both in compounding stigma and in mitigating it. On the one hand, the law can reinforce inequalities; discourage people from getting tested or treated; waste financial resources; be selectively, unfairly and ineffectively applied; and create a climate of impunity that fuels violence and harassment. On the other hand, it can be utilized to promote recognition, protection, and fulfillment of human rights; obligate the establishment of programs and services; shape community standards; and play a role in HIV prevention, particularly for key populations.

Progress is evident. Around the world, 89 countries have advanced recommendations of the Global Commission on HIV and the Law, and HIV-specific laws in many countries have been repealed, while the interpretation of others has been reviewed, including laws that criminalize homosexuality and drug possession. Panelists agreed there is a greater appreciation of scientific advancements in relation to the role of HIV-related law and in the creation of laws that protect women and girls from violence, along with those that recognize the right to comprehensive sexuality education.

Despite these advances, much remains to be done in terms of HIV and the law. Travel restrictions remain in place and criminalization of HIV continues to be a great concern, despite scientific understanding. Coercive HIV testing remains an issue, along with limited laws that promote access to justice. Finally, the criminalization of sex work, drug use, and homosexuality is not only stoking stigma and causing great human harm; it is fueling the global expansion of the HIV epidemic itself.

While progress has been made, HIV-related stigma remains firmly entrenched around the world. Only with a better understanding of its complexities and the ongoing development of effective programs will we begin to see a reduction in stigma and an improvement in HIV-related outcomes.