Edam Ehm, Living Positive Victoria President (left) with Dr Darren Russell, Clinical Associate Professor, The University of Melbourne and James Cook University, and Director of Sexual Health, Cairns Sexual Health Service, Cairns, Queensland at Mexico City’s International AIDS Society (IAS) Conference on HIV Science.
Living Positive Victoria President, Adam Ehm, is currently in Mexico City attending the International AIDS Society (IAS) Conference on HIV Science. Here, Adam reports back on one of the workshops he attended.
“Stigma is one of the greatest barriers to having optimal health and wellbeing for people living with HIV today. We know stigma is experienced in different forms, is associated with a multitude of intersectional identities, and in many ways, is an intrinsic part of how society operates”.
“During the conference I attended a community workshop titled, “Getting to the #HeartOfStigma: New innovations to measure stigma”. The workshop was aimed at healthcare providers, researchers, key populations and community advocates, providing an opportunity to discuss issues around stigma, explore the science of stigma and best practice examples from healthcare providers about providing stigma free services”.
Chairs for the workshop included: Lucy Stackpool-Moore (International AIDS Society), Asa Radix (Callen-Lorde Community Health Centre), Carlos Fernando Caceres (Universidad Peruana Cayetano Heredia), and Kate Thomson (The Global Fund).
“I was very interested in participating in deep discussions about stigma with a wide variety of individuals from around the globe attending this key scientific conference. The first thing discussed was a definition of stigma and the types that exist (ie. anticipated, perceived, enacted). Stigma is a Greek word and there was general consensus amongst workshop participants that it referred to a ‘mark’ or ‘blemish’. One thing that was made very clear was that stigma and discrimination are not the same thing, and the facilitator actually explained that a long-term activist who they had met recently stopped using the terms together in the work they were doing. It was fascinating to see that some individuals in the room did not believe that they had ever stigmatised someone else, and this provided further opportunity to discuss how pervasive stigma is to a variety of settings and key populations”.
The IAS recently launched a campaign to consolidate and amplify some of their action in relation to stigma #HeartofStigma. Personal narratives, slogans and graphics that can be used to share on social media were part of the campaign, with images and sample tweets and posts available via a digital tool kit.
“It’s worth nothing that NAPWHA recently published a framework titled NAPWHA Stigma & Resilience Framework – National Framework to Address HIV Stigma and Build Resilience Capacity for People Living with HIV which will be a pivotal document as Australia works towards eliminating stigma and discrimination for people living with HIV, whereas the UNAIDS and WHO’s Global Health Workforce Alliance launched the Agenda for Zero Discrimination in Healthcare in 2016, with its vision for a world where all people in all locations are able to receive adequate healthcare with no discrimination in line with The UN Political Declaration on Ending AIDS”.
Workshop participants discussed the following key questions:
1) Healthcare providers – what does it take to “do the right thing” despite prevailing social and cultural norms?
2) Recognising stigma – how do you know or document when stigma occurs? And how can you track if things are changing over time?
3) Innovations – what works and what are the gaps remaining in being effective in reducing stigma?
The group included HIV clinicians, clinical nurses, medical students, policy advisors, and those working in NFPs from around the world. At the end of the intense discussion, we had developed a list of 14 key things that are critical when addressing stigma and discrimination:
1) Community-driven content;
2) Quality data collection measures so that everyone is on the same page;
3) Avoidance of making assumptions;
4) Being courageous and standing up for what’s right;
5) Person-centred care;
6) Taking time to build trust with patients;
7) Open and supportive environments for teams to discuss what’s important to them;
8) Looking in/looking out perspective;
9) Advocating for educational and structural changes;
11) Normalising that there are no norms;
12) Peer-delivered services in multidisciplinary teams;
13) Respect and thankfulness.
“In order to combat stigma and discrimination in Australia, organisations must continue to form solid partnerships, undertake multi-pronged evidence-based approaches, and must advocate for structural change to drivers of stigma and other forms of health inequities. Living Positive Victoria is committed to leading the fight against stigma and discrimination and the organisation’s current strategic plan outlines a range of ways that this can be achieved”.