NEWS & VIEWS
Stigma and Discrimination at the 6th IAS Conference on HIV Pathogenesis, Treatment, and Prevention
Posted by Laura Nyblade and Zoya Aleem
September 27, 2011
ROME, Italy—Every two years, the International AIDS Society (IAS) organizes the Conference on HIV Pathogenesis, Treatment, and Prevention, which focuses on the biomedical aspects of HIV and AIDS. During the off-years of the much larger, International AIDS Conferences, the IAS conferences provide an opportunity to bring together experts and organizations to focus on HIV clinical and prevention issues. It is described as the world’s largest “open scientific conference” on HIV.
Stigma and discrimination are consistently recognized as a major barrier to effective HIV programs. Thus, it is essential that stigma and discrimination research and best practices inform clinical and prevention planning, implementation, and monitoring. This year, at the 6th IAS Conference held in Rome, Italy, in July, the Health Policy Project (HPP) and its implementing partner, Research Triangle Institute (RTI) International, organized a professional development workshop on Strengthening Client and Patient Care: How to Reduce Stigma and Discrimination in Health Settings. The workshop asked participants to “name” examples of stigma and discrimination in healthcare settings. It also shared principles, approaches, and tools for stigma reduction and included a presentation on the impact of stigma and discrimination in health facilities in the host country, Italy. The workshop was filled to capacity, highlighting strong interest in the topic. Among the participants was a Kenyan doctor who remarked, “This workshop was extremely useful to me as it has made me better at handling stigma and discrimination at the workplace.”
Yet, despite the importance of addressing stigma and discrimination for improving treatment and prevention outcomes, there was no plenary talk or oral panel devoted to the topic and only one oral presentation focused specifically on stigma and discrimination (Kerrigan, et al., MOAC0102), presented in a panel on structural risks and interventions. Out of more than 2,600 abstracts, 170 mentioned stigma and, of those, only about one-third focused on the issue in substantive manner. These abstracts can be divided into the following themes:
- Prevalence of stigma and discrimination among adults and adolescents living with HIV (CDC276; CDC418; CDD251; MOPE397; MOPE406), health providers (CDD006), general population (CDC231; CDC381; CDC438) and children and adolescents (CDC116; CDC428)—demonstrating the continued presence of high levels of stigma and discrimination across diverse countries, settings, and populations.
- Internalized stigma experienced by PLHIV and its relationship to depression, risk behavior, and well-being of the individual (CDB231; CDB316; CDC365; CDC467; CDC437).
- The detrimental effect of stigma and discrimination on use of services and on health. For example, the Kerrigan, et al., study from Brazil found that “HIV stigma and discrimination have a significant impact on the overall health and HIV protective behaviors of [PLHIV] including those linked to ongoing HIV transmission dynamics.” Two posters from a prospective study in Kenya (TUPE334 and TUPE335) documented the effect of stigma on women’s willingness to give birth in a health facility (an important part of preventing mother-to-child transmission) and the effect of anticipated stigma on disclosure of HIV status to a partner, which in turn influences delivery in a health facility.
- The role of religion and communities of faith. On the one hand, religion and communities of faith can create, entrench, and deepen stigma and, on the other, they can be powerful allies in combating stigmatizing attitudes and practices (CDC184; CDC205; CDC422; MOPE401).
- Programs or tools to reduce stigma and discrimination (though few presented evaluation data). A pilot study in Puerto Rico working with medical students (CDC426) designed and implemented a stigma-reduction intervention emphasizing the role of socio-structural factors increase vulnerability to HIV infection, such as poverty and marginalization. The authors note that this is a challenge because the training of health professionals tends to focus on individual-level factors, such as behaviors and decision making. At the one-year follow-up, qualitative data demonstrated a deepened understanding among participants of the role of socio-structural factors in HIV infection.
In about two-thirds of the abstracts, stigma is mentioned briefly, without being substantively integrated into research or program design from the outset. For example, within abstracts regarding project/program evaluation, authors often cited stigma reduction as a general aim of the project or as an outcome of the project without reference to how stigma is defined, addressed, or measured within the study. At times, stigma appeared exclusively in conclusions in the form of a future goal or recommendation for further research. References to the stigma and discrimination sometimes appeared in discussions as a probable cause or one determinant of poor utilization of healthcare services, without any data presented to substantiate this claim.
The studies and workshop presented at the 6th IAS Conference have helped further our understanding of the continuing presence of stigma and discrimination and their detrimental effects on people’s lives and on prevention and treatment services. However, several gaps in evidence remain, especially regarding:
- Standardized measures for stigma and discrimination;
- High-quality evaluation data on stigma and discrimination-reduction programs (both stand-alone and as part of combined programs) and their relationship to health outcomes;
- Models on how to institutionalize stigma and discrimination-reduction (e.g., in training of health workers);
- Data on the costs and cost-effectiveness of programs that work; and
- Attention to multiple, layered stigmas that compound HIV-related stigma (e.g., towards men who have sex with men, sex workers, and people who inject drugs).
The Health Policy Project is working at the global and country levels to help fill some of these gaps. This past week, the project hosted a meeting of researchers, program implementers, and other key stakeholders to build consensus on indicators for measuring stigma and discrimination in healthcare settings. Once finalized, these indicators will help to inform the design of stigma-reduction programs, monitor their effectiveness, and enhance accountability for eliminating stigma and discrimination in healthcare settings—which should be safe spaces for seeking HIV prevention, treatment, and care.
To learn more about what you can do to combat stigma and discrimination, please visit the Stigma Action Network.
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