Tackling HIV stigma: Why it’s important and what needs to be done

Experiences of HIV-related stigma are still incredibly high in Canada – about 75 per cent of people living with HIV are careful telling others because of the associated stigma, according to a recent survey. However, given the continued lack of understanding about how stigma makes people feel unwell, it is a challenge to design solutions to reduce its impact.

The People Living with HIV Stigma Index is a global survey tool that has been implemented in more than 100 countries and aims to document lived experiences of stigma and discrimination. The team at Reach Nexus, a national research group working on ways to address HIV and other sexually transmitted and blood-borne infections and ending the associated stigma, along with its community partners, are implementing the study in Canada; in its first publication, the study team examined how different types of stigma influence each other and intersect with other health risks to impact health and wellbeing.

What’s stigma?

Stigma revolves around the labelling of differences and negative stereotyping of people, leading to an “us” versus “them” separation and often resulting in prejudice and discrimination. Stigma can be broken down into different dimensions based on how they affect each person:

• Enacted stigma: actual experiences of discrimination, prejudice, or stereotyping
• Internalized stigma: shame and guilt associated with having HIV
• Anticipated stigma: expecting others will treat you negatively because of your HIV status.

The survey revealed high rates of stigma and subsequent struggles with health. For example, of the 724 participants living with HIV in Ontario:

• 45 per cent said people have physically backed away from them after learning they have HIV (enacted stigma)
• 57 per cent said they feel ashamed of having HIV (internalized stigma)
• 75 per cent said they are careful who they tell they have HIV (anticipated stigma)

• 38 per cent had significant levels of depression
• 16 per cent said they had poor/fair overall health

The study found that enacted stigma can lead to increased internalized stigma and depression. Understanding how these factors affect health may provide insights into developing solutions. While there are effective interventions for depression that can improve people’s health, internalized stigma interventions so far have shown limited value due to a lack of understanding around social and structural drivers of stigma. Thus, there’s a need for the development and evaluation of interventions that not only support people living with HIV who are struggling with stigma, but also to challenge the negative societal attitudes that perpetuate HIV stigma. As such, it is essential that researchers, policymakers and community members commit to developing actionable solutions designed for the people and communities who need them most.

Standing up to stigma

The stigma problem won’t be solved in a day, but there are still things we can do now.

Educate yourself. Spread accurate knowledge.

Talking about HIV with your friends, family and community can reduce fear and shine a light on the debilitating effects of stigma. Staying informed about available resources can also help to support people living with HIV who may be struggling with stigma.

Community-based agencies and online platforms are available to help you or a loved one who needs support with HIV care, mental health or stigma. Sharing your personal story or reading others’ stories can be an effective way to bring attention to experiences of stigma.

Lastly, check out this animation from the HIV Stigma Index Project devised to pummel stigma. We need to reach the people who aren’t being reached – who are still feeling this stigma – and sharing stories may be one way to begin to ease the burden.

We would like to acknowledge the peer researchers who worked on this study and a special thank you to Arthur Dave Miller, George Da Silva and Michael Murphy for contributing to the writing of this article and lending their lived expertise – without them, this work would not have been possible. We would also like to thank the study participants for sharing their stories and allowing us to document their personal experiences with HIV stigma.