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We survive - but AIDS is not over - a BANG BUS special

AIDS is not over – not for the millions still being infected both at home and globally, nor for those of us still living with the consequences of infection, survival and harsh early treatments. We need both actions and memorial.

Image: Bang Bus tour, 25th November 2017, by Holly Buckle.

Last weekend the BANG BUS - World AIDS Day Special bought together a group of creatives, medical staff and HIV activists in a theatrical bus-tour of London’s fight against HIV/AIDS.

As well as remembering the struggle, the past actions and slogans and our key turning points – and demanding a memorial as so many other countries have built – we also reminded onlookers that AIDS is Not Over, and warned the government “Don’t F*** with our NHS”.  

AIDS is Not Over

The majority of the 104,000 plus people living with HIV in the U.K. now live near normal lives. Yet AIDS is Not Over.  

Last year’s figures are startling: Over 1 million people died of AIDS worldwide, according to the Bloomsbury Clinic HIV unit/UCL. Five thousand people died in the USA alone (where only 30% of positive people access medications). There were over a million new infections, taking the number living with HIV worldwide to over 38 million people - a staggering 53% of whom cannot access life-saving treatment.

AIDS remains a political choice, a syndrome that kills the poor and women worldwide (51% of all cases are in women). Some gay men in the Western world speak of the end of AIDS and a post-AIDS world. It seems to be a rather ‘I’m okay Jack’ attitude: “We have our meds; we will survive Gloria and so it’s business as usual”. Figures from other London clinics such as 56 Dean Street show that new infections in the U.K. for white gay men have fallen dramatically over the last couple of years. But in the UK, they are not falling dramatically amongst black and ethnic minority men (both gay and straight) or the trans community, and amongst women the figures rose.

Forgotten too are us long-term survivors. Many of us live without savings or pensions. Our disability benefits – our lifeline - are being stolen in the government’s inhumane ‘austerity’ drive. We suffer from the inadequacies of the early medications – before the 1996 medical miracle of combination therapy - and their long-term side effects such as exhaustion, depression, lipodystrophy (muscle wasting and localised loss of fat tissue) and now cancers. And we are developing age-related new conditions - the majority of people living with HIV in the UK are now over 50.  

We were meant to die, many of us were on the verge of death and we survived only to be now attacked, once more by an indifferent Britain of 2017.  

Then there is the PTSD and other mental health issues caused by being told at a young age there was little hope.  We cared for so many loved and still remembered friends, rehearsing our fates as they died terrible deaths. Then against all odds, we survived. We are scarred not just by the plague and its early treatments, but by guilt - ‘how did I survive when my friends are dead?’. And shame remains an issue.  The morality police, mimicking the grotesque newspaper headlines of the 1980s and 1990s, remain a constant added pressure.

Stigma

Prejudice is the overriding blindness of HIV/AIDS, a dark smog over the world. Guilt relates to others (our dead friends), whilst shame completely invades the self, stemming from an ever present sultry stigma.  It has shown the failings of us as human beings and of our huge collective fear of death. It has led to the destruction of love and loving relationships and to an unbearable loneliness of HIV positive people, a huge killer in itself.  Stigma is especially bad from the same communities which bore the brunt of AIDS. Just ask any positive gay man in the UK or those from the black and minority ethnic communities.  Of course there are many enlightened soldiers who fought and continue to fight with us, but it still feels like a continuous civil war.

Over 30 years since the effective/shocking 1986 Don’t Die of Ignorance Campaign, its fearmongering message still prevails and its evocations are remembered: a volcano erupting (in Britain!); a tombstone being chiselled sounding like a pressing death knell (on display now at the Wellcome Collection, London). Above all the immortal voice of John Hurt’s warning “a danger that has become a threat to us all.”

I produced a short film in 1987 which John starred in not long after he did the advert. It won many awards and we remained friends, often meeting for drinks in the infamous Coach and Horses in Soho, London. Overt homophobia and racism were ever present in those days, living in ‘sin’ was not the norm and underage sex was ignored. A mutual drinking buddy, an actor, had suddenly died of AIDS in 1988 and it all became very real to us. John Hurt declared, for all to hear, “I wish I’d never done that bloody ad”. Showbiz was being hit hard, and the media-fuelled cruelty shown by our fellow Britons towards the severely ill was soul-destroying.

In September 1993 I disclosed to John I had been diagnosed after having been raped (not that it matters how one acquires HIV, but male-male rape is an issue we still barely recognise). I was too scared to report it; I was young, drunk and looking for love in very hostile times, and carried the additional burden of coming from a community that was pushing me to marry for the sake of the family name. John bought me a drink. He told me that it will make me look at who are important in my life, what I value and it will focus me on what matters. He always knew what to say. I reminded him of what he had said about the tombs and volcano advert. “Did I say that!” he answered in his well recognised voice.

Two years later, in 1995, my partner died and an ex-lover soon after and too many close friends; death was all around. I was not even 30; in retrospect life became more urgent, dancing beside death and his gloomy game with life. We danced a lot in those days - often at Trade after funeral after funeral.  

Turning Points

Today with the availability of PREP (a pill taken prior to sex to stop the transmission of HIV) and PEP (a combination of pills to stop HIV taking hold after unsafe sex or rape), we now have the tools to stop the spread of HIV. Also it is now generally accepted that U=U – i.e. that Undetectable equals Untransmittable/Uninfective. In other words, anyone who is on treatment for HIV and has reached an undetectable viral load status in their blood, cannot pass on HIV. Undetectable is the new negative.

Between September 2010 and May 2014, the PARTNER study monitored 1166 sero-different couples at 75 clinical sites in 14 European countries. Entry criteria included the positive partner having an undetectable viral load on treatment and that the couples were not always using condoms when they had sex. After at least 58,000 distinct times when couples had penetrative sex without condoms there were zero transmissions of HIV from the undetectable partner to the negative partner. It is a turning point.

Fast-Track - Ending the AIDS epidemic by 2030

The Executive Director of UNAIDS, Michel Sidibé gave a stark warning only one year ago “The progress we have made is remarkable, particularly around treatment, but it is also incredibly fragile. New threats are emerging and if we do not act now we risk resurgence and resistance. We have seen this with TB. We must not make the same mistakes again.” There is an international fast-track strategy in place to end the spread of the AIDS pandemic by 2030 set by UNAIDS. But none of the UK political parties are doing enough about it – as has long been the case.

Save the NHS

So what are these new threats?

Another BANG BUS theme was Don’t F*** with the NHS. Each year in the UK too many people needlessly die of AIDS as they test too late. NHS HIV specialist services are vital to ensure that treatment is adhered to and new infections are caught early.

A pilot scheme at London’s King’s College Hospital A&E, where routine HIV tests were taken, found 32 people unknowingly carrying the virus. They are lucky that they were caught early. This scheme must be expanded throughout the UK.

The growing threat of drug-resistance needs to be taken far more seriously. Other challenges are the mental health issues connected to contracting a once life-threatening virus, which can lead to suicide, drug taking and alcoholism and poor medicine adherence. Chemsex (when people take drugs that enhance sex and make them feel uninhibited) is a huge issue for gay men in metropolitan areas in the Western World and needs to be treated without prejudice. There is also the growing threat of co-morbidity factors, as the HIV population ages, and a resultant medical interaction situation.

#AidsMemoryUK Campaign

The final theme of the Bang Bus was the need of a National AIDS Tribute in London - the city which was home to the most people who died of AIDS in the UK and from where the early response against the battle was directed from. Having won many battles, a lot of us need closure and a place to focus our memories and our bereavements.

AIDS was, and continues to be, the major health issue of the latter 20th and early 21st centuries, killing 35 million people worldwide, so far. Many countries have national memorials including the USA, most EU countries, South Africa, Brazil, Russia, Belarus and the Ukraine. But the UK lags behind. AIDS is part of the UK’s history, it changed how we looked at ourselves as a nation. It is a triumphant example of how people came together often with contradictory value systems and overcame their own prejudices to fight together. It is an important message to remember.

On the BANG BUS, different communities of all ages, classes, sexualities, genders, races, politics, religions, positive, undetectable and negative shouted AIDS is Not Over, Don’t F*** with the NHS and Support the AidsMemoryUK Campaign. We demanded that our memories and pain are memorialised. We demand that 38 million people have access to HIV medications.

Activists from ACT UP London carried their own wounds, their memories, and their gallantry awards on foot, in heels, in wheelchairs, with walking sticks and leg braces to say we are still here, we survived, we must never forget.

About the author

Ash Kotak is leading the #AIDSMemoryUK Campaign to establish a memorial to HIV/AIDS in central London.  He is a playwright, film maker and spoken word poet.


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