Living on the Outside: Key Findings and Recommendations on the Nature and Impact of HIV/AIDS-related Stigma

"Stigma and discrimination against people living with - or perceived to be living with - HIV or AIDS continues to drive this pandemic. If we do not seriously tackle this dimension, the gains made by scientists and researchers may be in vain. The benefit of treatment for a person afraid to access it for fear of discrimination from their insurance carrier is wasted..."

This joint publication of Health & Development Networks (HDN) and the AIDS-Care-Watch Campaign emerges from the contributions of over 2000 people to the Stigma-AIDS eForum, which was first established in 2001 as part of a larger project on stigma and HIV/AIDS. The purpose of the eForum, which was managed and moderated by HDN, was to provide a space for interested people and communities to share their views and experiences, collectively moving towards a better and shared understanding of HIV/AIDS-related stigma, as well as learning about practical approaches to reduce it. (The eForum focused initially on Southern and Eastern Africa and then expanded in 2003 to a global reach.

This document provides a brief overview of the series of structured discussions, which addressed 3 broad areas:

1. HIV stigma and place - including the workplace, health care settings and the religious sector
2. HIV stigma and the person living with HIV/AIDS - including self-stigma, injection
   drug users (IDUs), and disclosure
3. HIV stigma and society - especially the role of the media

Within each sub-category of the above 3 areas, key themes/findings gleaned from the online discussions are included - e.g., one "contributor noted the 'vulture journalism' we see around HIV and AIDS. For many affected people who experience HIV stigma, skewed public understanding about HIV is partly to blame and may be caused by flawed information, or media coverage reflecting political and social agendas. Another described how HIV positive individuals were 'outed' without their consent..."

Advocacy and participation are two of the many strategies detailed within lists of recommendations which are provided in bullet-point lists detailing how, based on the evidence from the eForum, HIV stigma can be tackled. For instance, to address stigma within the workplace, participants in the discussion suggested that appropriate policies be put in place to protect the livelihood, security and support of affected people. They urged that models of good practice - such as those recommended by the International Labour Organisation (ILO) - be used to inform all initiatives. They stressed the importance of providing information to - and involving fully - people who are affected by HIV/AIDS in the development, implementation and monitoring of workplace policies. They also described as "paramount" the need for a human-rights based approach that is embedded in robust employment and anti-discrimination legislation.

In short, this piece stresses that people living with HIV/AIDS, policy-makers, religious leaders, media representatives, employers, and many others must join together in an "endeavour to shape prevalent discourses in order to inform a populace of non-stigmatising approaches to HIV, and the necessity of social responsibility."