We have now officially entered National HIV Testing Week . The campaign is in full swing, and I have seen posters in all parts of London promoting it . Obviously testing can potentially be an important tool in ‘normalizing’ HIV, however what is its role in relation to stigma? Can HIV testing reduce stigma?
I would like to share a presentation I did for Guy’s and St Thomas NHS Trust event for testing week.
When one is lost for ideas preparing for a presentation there is only a place to go:: Wikipedia
There is no doubt that HIV stigma has been increased by the fact that people most vulnerable to HIV often belong to groups that have been looked upon in a negative way and are already stigmatized by society.
There is also an aspect of stigma that is more internal, and is associated with the shame of living with HIV. Self stigma deeply affects our self-esteem and self-love. The slide below speaks loudly of those feelings. I have borrowed it from a presentation by Nadine Ferris Francis at EACS 2012 , which also showed how interventions such as mindfulness mediation, can be really successful in addressing this aspect of stigma
Most evidence around the relationship between stigma and testing, points to stigma as a barrier to accessing testing. People do not want to test because they do not want to associate in any way with HIV. HIV stigma also often acts as a barrier to accessing other services, including healthcare services..
This drive towards HIV testing is very much in line with UNAIDS 90 – 90 – 90 targets. As always the Local and the Global are strictly connected. Obviously targets are very important to reach our goals, but can also be a blunt instrument.
This slide by Public Health England shows that the UK is still pretty far from reaching those targets. Even if the UK is one of the most successful countries in retaining people in care and keeping them with a suppressed viral load. However we are clearly not too good at testing with still about a quarter of people living with HIV unaware of their status.
In this slide we can see the treatment cascade in the US . It is clear that even when there is a lot of testing, this is only the beginning, What happens after testing is even more important. The failure in the US of keeping people in care and managing their health so that they can have an undetectable viral load speaks volumes of what happens when there is not free access to healthcare. In theory people with HIV have access to free ARVs in the US , but the reality is that people have negative experiences of accessing healthcare, as they are often refused it if they cannot afford it because they are poor and without insurance. This creates a culture in which health care is inaccessible – even when it is there.
Also there is more to care for people living with HIV if we want to achieve good health, including having an undetectable viral load. Below you can see my ideal cascade of care, which includes, housing, access to peer support and treatment literacy. Within this cascade people living with HIV who feel well supported can be open about their status ( I am very conservative only 60%!). When people can be open stigma and ignorance around HIV immediately diminish .
There is not a simple solution to ending HIV stigma, but I strongly believe that empowering those who are stigmatized to speak for themselves, and live without shame is crucial. Positively UK is launching a social media campaign on World AIDS Day with a film in which people living with HIV and their friends speak out about the myths and reality of living with HIV. The hashtag for the campaign will be #wearepositive.
Lastly an important part of overcoming stigma is the use of positive and empowering language. When we use positive words our brain produces hormones like Oxycontin which promotes happy feelings, and connection to others, while negative, or violent words are connected to cortisone and other stress hormones which encourage a fight or flight reaction. So when we use verbal images of fighting, war , ending stigma, at some level we reinforce it.
It is important to spell out clearly what we want to replace stigma with using positive words.