It’s hurtful to those of us living with HIV, it’s unfair and it contributes to the spread of HIV. These are three good reasons why we need to understand HIV stigma’s role, how we stop or at least reduce it and track our progress in doing so.
In the video below, Muluba Habanyama and Francisco Ibanez-Carrasco, both working on a current HIV stigma study, explain the basics. It’s a good primer; we all talk about stigma (a LOT) but don’t always stop to pare it down, to think about its various forms, their impact and why they need to be challenged.
“Stigma has real world impact“ says Francisco in the video. “It creates barriers for individuals and groups to health care, immigration, employment, volunteering and even for relationships. It hurts all those who discriminate…. We often extend our prejudice against one individual “- Francisco sites an injection drug user as an example - “to an entire group”.
“The thing about stigma” says Muluba “is that if you hold prejudices and discriminate against someone you are taking value and agency away from them… Stigma can be expressed in small actions, such as verbal abuse or micro-aggression – little jabs we say to someone about how they should take care of their health because they are HIV-positive. Stigma can be active or it can sometimes be silent – avoiding someone because they are HIV-positive, for example.”
Many people living with HIV in Ontario, in fact, feel that stigma is the most important challenge they face, according to research.
Release of the video is concurrent with the gathering speed of the Canadian HIV Stigma Project, a collaboration between Reach, CIHR and the OHTN. The project has received funding of $1.5 million over five years, contributed in part by CIHR and in part by Public Health Agency of Canada (PHAC).
The OHTN’s Sean Rourke says this: “we were fortunate to just get funding from PHAC (over 5 years) and CIHR (3 years) to support our Ontario and National stigma intervention work – which includes: (1) implementing the HIV Stigma Index across Canada (which is done by peers), (2) building novel “contact-based” interventions to capture narratives about stigma and discrimination experiences - but also, and more importantly, what can be done through novel interventions to influence/change the attitudes, beliefs and behaviors that created those situations and experiences in the first place; and (3) working with health care providers within the health care system to address stigma and discrimination issues in HIV.”
The stigma index is a tool developed by GNP+ to measure the impact of both self–stigma and externalized stigma. It incorporates a questionnaire intended to be administered by peer research assistants – people living with HIV already trained in community-based research techniques.
A full day meeting in Toronto last week saw CATIE’s John McCullagh, The Prevention Access Campaign’s Bruce Richman and myself present on the Undetectable = Untransmittable (U =-U) campaign to the Stigma Steering Committee and others involved peripherally. The feeling is that the U = U campaign represents a unique opportunity, a structural intervention to reduce HIV stigma in Canada, with the Stigma Project capturing its impact. With New York City-based Richman fielding questions via skype, the meeting received useful feedback on how marginalized populations react to U=U and the challenges to the campaign this represents.
Stay tuned for more on the stigma project. To learn more go here.