Why a Conference on HIV-Related Stigma and a Center for Stigma? [pdf[
Sohail Rana, M.D., Howard University
Rebecca Vargas-Jackson, M.D., George Washington University
Introduction to HIV Stigma [pdf]
Laurie Bauman, Ph.D., Albert Einstein College of Medicine
AIDS stigma sabotages public health efforts to treat those infected with HIV and to prevent transmission. It affects the behavior of individuals, some of whom would rather die than be labeled as HIV positive. It tears families apart, resulting in secrecy and fear of abandonment. It affects whole communities that, through weakness and denial, accept open discrimination against those with HIV, and collaborate in withholding economic opportunity, needed medical care and the gift of friendship. In this presentation, we will explore HIV/AIDS stigma, the worldwide irrational rejection of those with HIV. We will define stigma, distinguish between societal stigma and internalized stigma, differentiate perceived and enacted stigma, and describe the many consequences of stigma as they manifest differently at the individual, community and national/international policy levels. We will explore the roots of AIDS stigma and confront it for what it is, a first cousin to racism, gender inequality and repression of the LGBT community. Although HIV/AIDS stigma continues to be a major reason for the persistence of HIV pandemic, there is hope. We now know that it is possible to address, confront and reduce HIV/AIDS stigma, and that the time has come for an international agenda to eliminate it.
The Layering of HIV-related Stigma Within a Community [pdf]
Leickness Simbayi, D. Phil., Human Sciences Research Council, Cape Town, South Africa
HIV/AIDS-related stigma is frequently layered over other forms of social inequalities (e.g., race, gender, class, sex work, homosexuality, religion, xenophobia, transgender, drug use, mental and/or physical disability, caste, disease, etc.). This accentuates both the exclusion and devaluation of PLWHA resulting in them experiencing double/multiple stigma or super-stigmatization. Examples of some layered stigma from South Africa, India and the USA to illustrate the concept will be presented. It is concluded that there is a need for group-focused interventions to sensitize the general public to the problem of super-stigmatization and its complex social dynamics. In addition, there is a need to emphasize that everyone is at risk of HIV infection in a generalized epidemic like that in South Africa and in concentrated epidemics found in parts of both India and USA irrespective of their perceived safe social space.
How Stigma and Lack of Disclosure Fuel this Cruel Disease [pdf]
Suniti Solomon, M.D., YRG Care, Chennai, India
HIV infection was first detected in India among Female Sex Workers in 1986. Until this point, the official government position was that there was no HIV disease in India. The resultant stigma following the documented first cases was tremendous and People Living with HIV/AIDS (PLWHA) were discriminated to the extent that they were thrown out of homes and villages, and isolated, much like people with leprosy for the past 2000 years. Today, after 25 years since detection of HIV in India the levels of stigma have reduced, but are still present; this makes life difficult for those with the infection. For the first 10 years following detection of HIV in India, when people walked in for Voluntary Counseling and Testing (VCT) and were found HIV positive they broke down and cried and so did I, with my hands on their shoulders saying “prayers will help”. Today with HAART, treating AIDS is like treating a chronic disease. I don’t cry anymore but most of the patients still do and want total confidentiality, and do not even disclose to their partners/spouses due to fear of the resultant stigma. In my talk, I shall discuss issues such as my patients’ lack of disclosure of their HIV status to their partner, family, health care workers, co-workers, children etc. which fuel the epidemic –and how YRGCARE (my organization) has helped to solve few of these issues.
HIV-related Stigma in Health Care and its Impact on Families [pdf]
Li Li, Ph.D, University of California, Los Angeles
HIV-related stigma and discrimination in health care settings are significant barriers that impede effective response for HIV/AIDS treatment and care. In the past seven years, we have conducted a series of studies on HIV-related stigma among service providers and the impact of HIV-related stigma on people living with HIV (PLH) and their families in China. We have learned that HIV-related stigma in health care is significantly associated with both individual providers’ prejudicial attitudes and their perceived institutional support for protection and care. Insufficient universal precaution knowledge and supplies add to the service providers’ avoidance attitudes toward PLH in medical practice. Many providers limit their interaction with PLH and endorse coercive policies for their own safety. The negative impacts on families are manifested through HIV disclosure process, as many providers believe that family members should first be informed of a PLH’s HIV status. Social norms in health care settings need to move toward acceptance of PLH and their families. Currently, intervention programs that integrate both individual behavioral changes and structural components are in the field to address these challenges.
Double Stigma: Being Both Gay and at Risk for HIV [pdf]
Chris Beyrer, M.D., Ph.D, Johns Hopkins University
The epidemic of HIV in the USA has long been marked by health disparities, with the highest rates of HIV infection among African Americans. The greatest proportion of US infections is among men who have sex with men (MSM) now accounting for some 2/3 of all Americans living with HIV according to the CDC. The subset of African American MSM are doubly impacted, by race and sexual activity risks, and are by far the highest prevalence subset of US citizens. In Baltimore in 2009, for example, HIV rates among white MSM were 12%, but in African American MSM 52%. Strikingly, data consistently show that they have lower rates of individual level risks than MSM of other races: fewer numbers of sex partners, lower rates of substance use, and AA MSM do not have greater numbers of opposite sex partners. What has been shown to be different for African American MSM are lower rates of HIV testing, lower rates of knowing HIV status, and higher rates of untreated syphilis, all of which suggested health care access disparities. Social and community factors may play large roles in the limited access and intake of Black MSM for HIV services. These barriers may in turn play important roles in HIV risks. Stigma and discrimination against Black MSM, may also play underappreciated roles in limiting these men’s self-efficacy, self-esteem, and willingness to be tested and seek treatment for HIV infection. We will explore the role that stigma may be playing in this epidemic among MSM in the US.
Lessons Learned in the Global Effort to Reduce HIV Stigma [pdf]
Laura Nyblade, Ph.D., International Center for Research on Women
This presentation focuses on key principles, strategies and tools for stigma-reduction programming based on lessons learned from stigma-reduction work by ICRW and partners in 12 countries in Africa and Asia. For the past 10 years, ICRW and partners have developed evidence-based programming and tools to facilitate action to reduce stigma across diverse settings. Common to all successful programs is addressing three immediately actionable drivers of stigma: lack of awareness and understanding of stigma; fear of contracting HIV through casual contact; and the linking of people living with HIV to behaviors considered socially improper or immoral. Key elements of successful programs include: building understanding and ownership among community gatekeepers; involving a range of change agents in stigma reduction activities; utilizing a combination of participatory approaches and ensuring that programs are led by or continuously engage the communities experiencing stigma. The presentation highlights several evaluated projects and features tools and resources people can use to advance stigma reduction in their own communities.
Moving Forward: Center for Stigma and Cultural Competency: Closing Remarks [pdf]
Sohail Rana, M.D.