I remember a conversation with a close friend several years ago, near to this time, who told me in quiet tones that he was HIV positive. I remember thinking that 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 be able to comfort him or talk to him about what he was going through – I made it my mission to learn about what HIV really is and how it works. I became a volunteer for Body Positive North East (BPNE), a regional HIV/AIDS charity, and I am now a Lecturer at the University of Sunderland, researching the life histories of people living with HIV.

HIV Feature by Andrew Dalton

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 anymore. This silencing of HIV 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 previous years, there is no cure as yet, and once infected people have it for life. It causes periods of sickness, severe discomfort and ill health. On top of this I learned, through interviews for my own research, that people living with HIV in the North East suffer stigma in the workplace, an above average chance of developing mental health issues, a fear of telling loved ones 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, while very positive in some places, highlighted a much more negative picture of HIV-related stigma in the region. They 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 (there is no route of transmission here). The survey also found that only two out of ten respondents believed that people in their neighbourhood or community are understanding towards those living with the virus.

Education can be a foundation for a lack of awareness about HIV, and can be 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.

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According to the Department of Health’s latest 2014 figures, an estimated 107,800 people are living with HIV in the United Kingdom, and about 26,100 people – that’s a quarter of the amount of people living with HIV – 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. In 2013, in terms of the highest UK rates amongst later-life HIV diagnosis, the number of people living with HIV 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 indeed 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 on World AIDS Day.

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