On Monday October 23rd an impressive group of politicians and civil society gathered for a panel discussion on HIV and openness at the Rosengård Library. The event was an important meeting point to highlight the challenges and progress in the field of HIV.
The panel consisted of regional politicians (Carina Svensson), municipal politicians (Sedat Arif, Isabel Enström) and representatives from non-profit organizations – Noaks Ark Mosaik (Povi Foly Lawson) and Positiva Gruppen Syd (Anton Yashin), who shared their perspectives and experiences. The moderator of the evening was Joost Nussy from Positiva Gruppen Syd.
The event started with a contextualization of the topic. Today, HIV is a disease that is more about the social than the medical aspect and in addition, HIV as a disease is more stigmatized than other diseases, which means that many people living with HIV do not dare to talk openly about their HIV status and live in silence with their diagnosis. The Swedish Public Health Agency has concluded that less than half (39%) of young people with HIV are not as open about their HIV status as they would like to be. This should be problematized because the degree of openness about one’s diagnosis is linked to a better quality of life.
After the contextualization, we listened to a story where the social aspect of living with HIV was highlighted: it talked about fear of health care, of being treated differently and about an inner journey of self-esteem, shame and how it is connected to how open a person is with their diagnosis. The story was not only dark, but also about personal progress.
The panel discussion revolved around three main themes:
- Challenges of HIV and openness: The panel emphasized that stigma and discrimination still affect people living with HIV. Panelists discussed intersectional stigma and how some people find it easier to be open than others. People’s privileges were raised and the fact that we have different conditions that lead to inequalities that affect the individual. Lack of language skills is an example of such a barrier.
- HIV and quality of life: The panel discussed the undetectable equals untransmittable (U=U) message. The fact that today HIV is not transmitted is currently not clear to all health care workers. It is important that people understand how HIV is spread and not spread, and that they have access to accurate information on how to prevent and treat HIV. Education can help break down myths and misconceptions about HIV. This is crucial to reduce the spread of HIV and improve the quality of life of those living with the virus.
- The importance of systematized peer support: We talked about the motion from 2021 for systematized peer support on a regional level which was answered. Currently, there is no systematized peer support, i.e. peer support is not offered at the infection clinics in the Skåne region. All people living with HIV have regular contact with an infection clinic and it is therefore important that they are offered peer support through them. If peer support is offered at the clinics, everyone can be offered equal access to peer support that has a positive effect on the individual. The UK-based methodology, which Positiva Gruppen Syd has adapted to Swedish society, is an effective tool that ensures people’s well-being, prevents the risk of possible sequelae and can thus relieve the burden on the health care system in the long term.
The panel came to several important conclusions, including the need to continue breaking down barriers and the stigma surrounding HIV, but the question remains of how we can work together to move forward in a supportive way. Therefore, we will continue the dialog on how to fight together for a good life for people living with HIV!