Ignorance and stigma still surrounds the virus, says Andrew Dalton

I REMEMBER a conversation with a close friend several years ago who told me in quiet tones that he was HIV positive. I knew practically nothing about the virus and what I did know was patchy at best - a mix of myth and stereotypes pulled from the media.

I had no way of being able to relate to him or talk to him about what he was going through. Therefore I made it my mission to learn about what HIV really is. I became a volunteer for Body Positive North East (BPNE), a regional HIV/AIDS charity, and I am now a social sciences lecturer at the University of Sunderland, researching the life histories of people living with HIV.

I have come a long way since those early days. On my journey I learnt some eye opening facts and the most surprising thing of all is that HIV is rarely talked about any more. This contributes to the stigma around living with it and the belief held by many people that the virus can be cured or managed by taking a few pills every day.

While it is certainly true that HIV is much more manageable than it was in years gone by, there is no cure as yet, and once infected people have it for life. It causes periods of sickness, severe discomfort and ill health. People living with HIV in the North-East still suffer stigma in the workplace and an above average chance of developing mental health issues. They have a fear of telling loved ones about their condition and, in some cases, people have lost entire friendship groups through being ostracised.

I worked with BPNE to commission their first ever North-East ‘Public Knowledge and Attitudes Survey’, to gauge what the public thought and knew about HIV/AIDS. The results showed that one in five of all respondents felt that they did not know enough about how to prevent HIV transmission during sex and that kissing is a route of transference - it is not.

HIV-related stigma is still worryingly prevalent. One in ten of all respondents did not feel comfortable using a toilet cubicle after a person who is living with HIV, despite there being no route of transmission. The survey also found that only two out of ten people believed that people in their neighbourhood or community are understanding towards those living with the virus.

Education, or a lack of it, can result in a breeding ground for stigma which young people take into adulthood. Perhaps this is not surprising to some extent as there has been no real investment in educating the public about HIV on a wider level since the ‘falling tombstones and icebergs’ campaign of the Conservative Government in 1987. Recent sexual health campaigns, especially those aimed at young people, have made no mention of it at all.

According to Department of Health figures, an estimated 107,800 people are living with HIV in the United Kingdom and about 26,100 of those - roughly 25 per cent - are not aware of their status and remain a risk group for passing it onto others if condoms are not used during sex.

Locally, HIV transmission rates in the North-East are worrying, particularly in terms of those living with the disease in later life. In 2013 the number of people living with HIV in later life was highest in London, followed by the Midlands, with the North of England ranking third overall.

People diagnosed with HIV late continue to have a ten-fold increased risk of death in the year following diagnosis, compared to those diagnosed promptly. In 2013, 530 people with HIV infection were reported to have died, most of whom were diagnosed late - a significant proportion of those people diagnosed late are people over 50 years of age. Not only is HIV growing and spreading in the North-East, so is the ignorance and stigma around it.

HIV has fallen off the radar in terms of people talking, seeing and knowing about it, however the actual virus has not disappeared. There are now more people living with HIV worldwide than there were at the height of the HIV/AIDS crisis of the 1980s and early 1990s and it is important to show solidarity with those living with HIV in the North-East.

The Centre for Applied Social Sciences are holding a free event at St. Peter’s Campus at the University of Sunderland tonight (December 2) from 7-10pm in the David Puttnam Media Centre in order to screen a documentary about HIV. There will also be a panel discussion. All members of the community are welcome to attend and you can find out more by emailing me for further details: andrew.dalton@sunderland.ac.uk.

If you would like to know more about the work of Body Positive North East, or if you need HIV support, please visit: www.bpne.org