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Guardian Weekend – HIV in Britain

Striking posters are appearing across the country. Celebrities including LL Cool J, Christina Aguilera and Ashley Judd are photographed with their hands clasped over their ears or with their mouths sealed with masking tape. Below, the relevant bit of the age-old adage is spelt out – Hear no evil, See no evil, Speak no evil – and a reminder about Aids.

The message is clear: when it comes to sex and HIV, we are not listening. It is the first sally in what will become the most high-profile sex education campaign seen in Britain for many years, including a £50m advertising blitz reminiscent of the memorable tombstone adverts of 1987 that exhorted the British public: “AIDS – don’t die of ignorance”.

The government has warned that Britain’s sexual health is now so poor that a campaign to “frighten and make people aware” is long overdue. Earlier this year, Melanie Johnson, then health minister, told us that she was even considering the idea of a sexual MOT.

“Every time you change your partner you should get a test. We must warn people about the risks they run in not practising safe sex,” Johnson said. HIV diagnoses in the UK have rocketed, increasing by 265% over the past 10 years to 52,385 people. Before 1996, only around 50 cases of heterosexual infection were diagnosed in Britain a year – most HIV cases were among gay men. But for the past five years, according to government figures published this summer, more heterosexuals have been diagnosed in the UK with HIV than gay or bisexual men. Only 28% of last year’s record 7,000 new HIV cases originated in the gay population.

And yet for many of us in Britain, HIV appears to be still a distant threat. The Aids apocalypse predicted in the 1980s has failed to materialise in the UK and, thanks to recent medical advances, those who are infected live long and fulfilled lives. The funerals have stopped. Instead, we lend our patrician support to HIV crises in other countries. If the government warning – that we are all at risk of being infected with HIV – feels at odds with reality that is because it is.

According to Ford Hickson, a fellow at Sigma Research who has helped chart the course of British HIV for the Department of Health: “Doctors, the government and Aids organisations have helped create a fantasy epidemic which gets everyone’s juices flowing, while ignoring the real one.”

UK statisticians, he says, have consistently failed to emphasise where people living with HIV in this country actually contracted the virus: if you take that factor into account, the picture of HIV in Britain is radically transformed.

In truth, more than 75% of the heterosexuals diagnosed with HIV in the UK last year were infected abroad or by partners who were infected abroad, with 68% of them having been exposed to HIV in Africa. Although black Africans living in Britain represent barely 1% of the population, last year they accounted for 42% of new HIV diagnoses. If you are black, African and living here, you are 50 times more likely to be HIV positive than any other ethnic group. A close look at the figures reveals another disheartening fact. Last year more than 84% of those diagnosed with HIV in the UK, who had been infected in the UK, were still gay or bisexual men. Although they constitute 1% of the UK population, gay men account for 43% of those with HIV.

A “gay epidemic” that everyone thought had been thwarted by the late 80s is back with a vengeance. What, then, of the so-called heterosexual epidemic that has led the government to commit millions to a health campaign? Incredibly, there are probably only 184 white, British, heterosexual men and women who have contracted HIV in the UK through having sex with someone from the same demographic group in the last 20 years. Professor Brian Gazzard, one of Britain’s most senior HIV specialists and head of HIV research at Chelsea and Westminster hospital, London, says:

“The chances of a white woman and a white man getting together on a Saturday night and infecting each other with HIV is tiny.” Our own calculations reveal that that risk is approximately one in 300,000. HIV in the UK is black and it is gay.

Dr Barry Evans, Britain’s leading HIV epidemiologist at the government’s Communicable Disease Surveillance Centre, tells us:

“The presentation of HIV figures has often been misleading. We have shied away from telling the explicit truth about those at greatest risk from the virus for fear of how it will be manipulated by racists and homophobes. I believe that this decision is wrong but I am not sure the government can handle or wants to handle a genuine debate about HIV in Britain.”

Black and gay HIV activists have conceded that presenting the real, and extremely delicate, story of HIV in the UK presents challenges to politicians and doctors. But they argue that by burying the true figures and mislabelling the crisis, the government and its HIV experts have unnecessarily exacerbated the epidemic.

Rhon Reynolds, of the African HIV Policy Network, believes that thousands of British Africans have needlessly been infected.

“Africa and the African Commission is way up there on Labour’s foreign agenda,” Reynolds says. “At the same time, the government has suppressed controversial reports into the scale of the black African epidemic in the UK, as well as introducing vindictive legislation that has set the fight against Aids back 10 years.”

The un-gaying of HIV, portraying the virus as predominately straight, has similarly enraged gay activists. Painfully honest HIV surveys compiled by the gay community have revealed that a quarter of HIV positive gay men have become weary of safe sex messages and anti-HIV medication and are increasingly engaging in high-risk, unprotected sex.

If the government’s aim in concealing the true story of HIV has been to protect sections of British society from stigma, what a dreadful mess it has made of it. Those who have already contracted the virus have had a cloak of invisibility thrown around them, while new HIV diagnoses are escalating. Unravelling the real story of the British epidemic shows that, alongside a patrician desire to protect gay and black Britons, New Labour has an equally strong impulse to back away from policies that are all-out vote losers.

The HIV crisis in black African Britain was visible as far back as 1995. That was the year statisticians began recording the ethnicity of people diagnosed with HIV in the UK: figures immediately demonstrated that the virus was disproportionately affecting heterosexual black Africans. Migrants from the African continent had been coming to Britain since the 50s. Ghanaians and Nigerians were among the first. Wars drove a second wave to the UK in the 70s and mid-80s, from Somalia, Ethiopia, Zaire (now the Democratic Republic of Congo) and Angola. A third wave arrived in the 90s – from Uganda, Zimbabwe, Zambia and South Africa.

Unsure of the public health implications of HIV positive people settling in Britain, the government left it to Pentecostal churches and African lay pastors to deal with the problem. Their response was often to prohibit the use of condoms and rely on prayer. Leading community activists warned the government in 1998:

“Marathon prayer sessions of up to seven hours take place with the laying on of hands. The [infected] fast for 40 days and 40 nights. They abandon medication, trusting absolutely the power of the gospel and mercy of Jesus. Many collapse and are admitted to hospital. Many have died.”

In 1999, for the first time, the number of black Africans diagnosed with HIV outstripped those among gay and bisexual men. Epidemiologists were shocked to find that one in 18 African women and one in 28 African men attending Sexually Transmitted Infections (STI) clinics were testing HIV positive.

“Many more Africans were getting sick and dying without even knowing they were HIV positive,” says Rhon Reynolds. “There were funerals every week, hundreds of coffins being flown back to Uganda, Zimbabwe, Zambia and South Africa. HIV was passing through the communities like fire.”

But, of the Department of Health’s annual HIV prevention budget of £53.4m for 1999, only £75,000 was allocated to African groups. By 2001, when prevalence of HIV in sub-Saharan Africa reached 8.4% of the entire population, Britain recorded the largest number of HIV diagnoses since the start of the epidemic.

The government now responded vigorously, publishing a National Strategy for Sexual Health and HIV backed by £47.5m funding. It acknowledged that the number of new infections acquired through heterosexual sex outnumbered those acquired through sex between men. However, although black African communities accounted for 60% of these heterosexual diagnoses, they were referred to only five brief times in a 53-page report that made them appear incidental rather than central.

Ministers claimed they wanted the communities themselves to design tailor-made HIV prevention strategies. The black African communities responded, submitting a framework for prevention to the health ministry in October 2001; it offered numerous proposals for education in conservative and introspective communities.

The Department of Health put the report on hold. It was still in limbo 14 months later when Dr Evans of the disease surveillance centre warned of an alarming new development: the virus was now spreading within permanent, long-established British African communities.

Cecilia was born in a small town in Acholiland, a region in northern Uganda that in the mid-80s was ravaged by a genocidal war and HIV – but it was not in Africa that she contracted the virus. Today she lives alone, in a first-floor flat in north-west London, surrounded by pot-palms and photographs of Ugandan friends and relatives, many of whom have died of Aids – or acquired immunity deficiency syndrome, the collection of illnesses such as TB and pneumonia that can kill when the body’s immune system has been damaged by HIV. She talks hesitantly of her world of pills, blood tests and counselling – aspects of her life she keeps from even her closest friends and family.

When the HIV epidemic first came to Uganda most people blamed the deaths on witchcraft. But Cecilia (not her real name) came from an educated family and knew what the virus was. When her first boyfriend proposed to her in 1986 she insisted they both be tested for the virus.

“We both travelled to Kampala, the capital,” she recalls. “We waited three months for the results and were ecstatic when we were both negative. I still have the paper today.”

In December 1987, Cecilia’s husband vanished, joining a rebel army. “One day a rebel soldier serving with my husband came and told me I had to flee.” Cecilia and her four-year-old son were granted asylum in the UK in 1991:

“I knew nobody when I arrived and turned to a local African church for company. During the first years it seemed that all we did was attend funerals, sometimes once a week, but no one in the African community would talk about the reason for so many deaths.”

She took a job as a packer in a cosmetics factory and, in 1993, fell in love with a Ugandan refugee. “Life goes on. I knew I would never see my husband again. But I was careful. Before we had relations I showed my boyfriend my HIV test and he told me that he was negative too.” One year later, Cecilia’s boyfriend fell ill and was admitted to hospital where doctors discovered he was HIV positive.

“He had lied to me,” she says. “He had been infected in Uganda. I had no idea what to do. Once the community knows you are positive they will tear you apart like a fox. I had to confide in someone and so I told my best friend, another Ugandan woman. We went to the clinic together for the test. I said to her, ‘You are so understanding.’ And she said to me, ‘I am HIV positive, too.’ ”

Three days later, Cecilia found out she was positive. “I thought that was the end of me but my friend helped me through it – until she died of Aids in London in 1998. She had been so afraid that she began her treatment too late. HIV is still seen as a ‘sin disease’. Ugandan refugees should be one community but we are divided. We are in fear of being sick – and of the British law, immigration officers and doctors. All of us are waiting in silence for a cure to arrive. Do you think it will come?”

By January 2003, three quarters of all heterosexual infections diagnosed in the UK were in black African communities. Rather than deal with the growing internal crisis, the government began to externalise the problem with a series of get-tough measures that aimed to stop all HIV positive people coming to Britain. Mandatory HIV testing for immigrants was mooted, sparking a furious, xenophobic debate.

On January 25 2003, the Spectator accused “foreigners [of] bringing death to our land”, and the Sun followed on January 27, warning that immigrants were “polluting us with disease”.

Subsequently a survey of black Africans living in the UK – Project Nasah, carried out by Aids charities and research organisations – found that the furore about closing borders and mandatory screening had heightened fears and so worsened the epidemic.

Since relatively few African men and women had ever sought an HIV test, for fear of attracting attention, a third of those who were HIV positive were not aware of their infection. Almost a quarter of those who had been diagnosed failed to attend clinics for treatment, even though many of them were desperately ill, in the belief they were not entitled to it, would be deported or shamed by their community.

In 2004, the government dropped its plans for mandatory HIV screening, and instead suggested excluding so-called HIV tourists, those from Africa and Asia who came to Britain solely to obtain free treatment on the NHS. From then on illegal immigrants who were HIV positive would be charged £14,000 a year for their anti-HIV drugs.

John Hutton, then health minister, said: “The NHS is a national institution to provide free treatment for those who live here and not for those who do not. There is a significant amount of abuse going on.”

Professor Gazzard, of Chelsea and Westminster hospital, warned ministers: “The net effect of charging HIV positive illegal immigrants will be to send them underground.” The claim that charging was a cost-saving measure was ludicrous, he argued. The Department of Health had calculated in 2001 that to withdraw treatment from any patient with HIV would result in them becoming chronically ill, infecting others and being admitted to hospital as an emergency, costing the NHS up to £1m. The real cost of annual medication was only £7,000 a year.

Winnie Ssanyu-Sseruma was born in Sheffield to Ugandan parents but when she was three the family returned to Africa, setting up home on the shores of Lake Victoria. By her teens, HIV had begun killing people in Uganda but no one was really sure what the virus was.

“I never thought it would touch me or my family. And by the time I was 19 I had left Africa for the United States,” she says. Winnie had won a scholarship to a university in Kansas and only returned to Africa in 1987 to see her family. “On that trip I met somebody and we started dating,” she says. “Then my studies resumed in the US and I had to leave my new boyfriend and family behind.”

To subsidise her college fees Winnie applied for a job as a careworker for which she attended a routine blood test. “I was perfectly healthy and young. I had nothing to fear.” Winnie was called back two weeks later and told she was HIV positive.

“I heard the words but my brain refused to take them in. Later, alone in my bedroom, I sat and stared at the wall trying to come to terms with the enormity of what I had been told. It wasn’t hard to figure out who I had contracted the virus from, but I also had to shoulder responsibility for consenting to unprotected sex.”

Winnie kept her HIV status to herself. She returned to Africa in 1994 for two years, and then in September 1996 visited one of her brothers who lived in London.

She said: “I needed to regroup and find a new direction in my life. While I was in London I went to an HIV clinic for a check-up. As a British citizen I was well within my rights. The doctor told me I was in a terrible state and prescribed a new combination of drugs. I didn’t want to move back to the UK but being with people who could talk openly about their HIV status convinced me to stay.”

However, in the past eight years Winnie, who is now chairwoman of the African HIV Policy Network, has become enraged and disappointed by the changing mood of the country:

“We should be shouting from the rooftops that our communities are being ravaged. We should have awareness campaigns. We should be tested and treated. Instead black Africans are marginalised. The virus thrives on powerlessness, poverty and social exclusion. In the past few years all three factors have been exacerbated. Now the British blame Africans for stealing treatment and infecting them. We live in a time of fear. It feels as if we are going back in time.”

The regulation requiring “HIV tourists” to pay for their treatment came into force and shortly afterwards, in February this year, Melanie Johnson, then health minister, was asked to substantiate the “myth” of HIV tourism by the the House of Commons health select committee. Put on the spot, she was forced to admit her department had no knowledge, not even guesstimates of how many people might be involved.

So there was no detectable defrauding of the NHS by HIV tourists, no estimate of savings to the health service by keeping them out, no examination of how charging would impact on the British HIV epidemic. However, charging made sense, in an election year, to a government that saw its immigration policy under sustained attack from the opposition.

Earlier this year, more than three years after it was first submitted, the Department of Health finally published the framework it commissioned in 2001 for treating and preventing HIV among black Africans living in the UK.

“By the time this report came out it was four years out of date, had been completely watered down and 7,000 more Africans had been diagnosed with HIV in the UK,” its authors told us. They argue that the virus has been driven underground, a fact testified to by a medical charity that is normally associated with crisis management in sub- Saharan Africa but that has decided to open a clinic in Tower Hamlets, east London. GPs there are so overwhelmed by the number of black African HIV patients and so uncertain about what treatment is now permissible that they have closed their lists.

In July, Médecins du Monde quietly opened Project: London in an office donated by the architect Richard Rodgers that offers treatment to African HIV positive people the government has scared away.

Although Britain’s gay and black African communities are similarly affected by HIV (16,200 HIV positive Africans and 19,329 HIV positive gay men), the two groups have had completely different experiences.

HIV positive gay British men appear to be one of the great success stories of the last decade. Millions of pounds have been raised for hospices and treatment centres; Elton John’s Aids Foundation alone has raised £16m. Every year gay Britain’s Community HIV and Aids Prevention Strategy receives more than £1.2m in government funding, while the National African HIV Prevention Programme receives only £400,000.

Gay campaigners have ushered in an era of the expert-patient and ensured that HIV has become the most organised life-threatening illness in the history of medicine. All the same, despite three decades of fundraising, research and advocacy, a record number of gay men are now being diagnosed with HIV. Dr Martin Fisher, an HIV consultant at the Elton John Centre at Brighton and Sussex University Hospitals, a county with the highest proportion of positive gay men in the country, says: “Ten years ago I had 300 patients and now I have 1,300.”

At a time when the government, for reasons of political expediency and paternalism, is presenting the virus in the UK as a predominately heterosexual one, gay men are 90 times more likely to be positive.

Paradoxically, massive advances in HIV medication have contributed to the resurgent crisis. Since 1996, combination therapy, a cocktail of three anti-HIV drugs that interrupt the virus’s ability to replicate, has drastically reduced the number of HIV positive gay men who have gone on to develop Aids. Deaths are now so rare – declining from a peak of 1,230 in 1994 to only 108 last year – that between 1996 and 2002 the number of gay men living with the virus almost doubled to 17,100.

Dr Fisher says: “Back in 1995 I would say to many patients,’Sort out your house and pension as we might not meet again.’ Now, 10 years later, they are still alive and I was wrong.” As the ever-growing gay HIV positive population of Britain feels more vigorous, it is able to resume an active sex life. All of which makes it statistically more likely that an HIV negative man will have sex with an HIV positive man.oe

Seeing Edwin Bernard stride down St James’s Street in Brighton it would be impossible to guess that he has been HIV positive for 23 years. The 42-year-old writer, who works for the National Aids Manual, an encyclopaedic web portal for HIV positive people, says: “I am a walking experiment and I am by no means unique. I am not relishing being 65 but I plan to get there and I will be celebrating.”

Edwin contracted HIV in 1982, nine months after he came out, and in 1988 was given five years to live.

“The only drug available then was AZT. It was incredibly toxic and only given to people in the final stages of Aids,” Edwin says. “There was such a bleakness about HIV in the UK back then. To be gay and HIV positive in 1988 meant you were completely on the margins of society.” At the first opportunity he moved to California, the centre of HIV treatment and research. The following year he was forced to take his first anti-HIV drug after doctors warned that his immune system was depleting.

“I lasted three months before having to move to a different regime and then another.” By 1995, having exceeded his doctor’s expectations by two years, Edwin felt healthy enough to begin a new relationship and moved to live with his boyfriend in Canada. The following year HIV researchers honed the science of combination therapy.

Edwin says: “It was a bittersweet moment for me as I was already resistant to virtually all of the drugs.”

Eventually, in spite of major setbacks, doctors found a way of juggling his anti-HIV pills. “Salvage case” is what doctors without bedside manners call HIV patients who have become resistant to all existing anti-HIV treatments and who struggle to keep alive long enough for a new drug to be developed. Edwin’s options were so medically limited that he considered himself “post-salvage” and yet even he found a combination of drugs that have kept him going for four years. Every day he pops 20 to 30 pills. Every two weeks he replaces his testosterone with an injection. Every three months his blood is tested to keep a check on his immune system and viral load – the measure of infectivity.

“It is all a balancing act,” Edwin says. “I have just taken out a pension and fallen in love again. He’s gorgeous and 10 years younger.”

However, the resurgence of HIV in the UK is not just a question of HIV positive men living longer and more fulfilled lives. There are thousands of men, unlike Edwin, who are now taking more sexual risks than ever before.

HIV has a hierarchy, with doctors calculating the relative risk carried by every conceivable activity when it comes to passing on the virus. Oral sex is at the low end with only a one in 4,000 risk. Sharing a needle with an HIV positive drug-user carries a one in 149 chance of becoming infected.

But at the apex is bare-backing, or unprotected anal sex, where the active partner is HIV positive and the other partner is negative, a practice that carries a one in 33 chance of passing on the virus. According to the Gay Men’s Sex Survey, one of the most candid and comprehensive analyses of who does what to whom and how, in the past year more than half of HIV positive men had had unprotected anal sex with at least one man, 17% had had unsafe sex with up to four partners and 22% had had unprotected anal sex with five men or more.

Some of those questioned bare-backed with other HIV positive men, which itself presents serious medical problems as someone with HIV can be reinfected by a different strain of the virus. But one in five were bare-backing in the knowledge that their passive partner was HIV negative, cold figures that are difficult to explain.

The survey’s authors concluded: “These data suggest that the first priority for most HIV prevention programmes should be men with HIV and men in relationships with them.” Confusion, malice, ignorance, euphoria, alcohol, cocaine, crystal meth and ecstasy may play their part, but the rise in high-risk nihilistic sex among a section of HIV positive men is also, according to Prof Gazzard, a question of complacency and fatigue over two decades of safe sex messages.

“We asked a group of men who had regular, unprotected anal sex why they didn’t use condoms. Half said they were HIV positive and assumed everyone else was,” he says. “And the other half said everyone was surely HIV negative as people who knew they were positive would not have unprotected anal sex.”

There are other indicators of the trend, including data from a series of recent syphilis outbreaks in London, Brighton, south Wales, Walsall, Manchester, Glasgow, Edinburgh and Newcastle. A disease that had virtually died out as a result of the safe sex messages of the 80s, has increased 25-fold in the past five years.

Writing in the Eurosurveillance Monthly, researchers warned that 53% of those diagnosed with syphilis also had HIV. It also now appears that many younger gay men have not heard the safe sex messages. According to recent surveys, most had never come into contact with anyone who had HIV and were too young to remember the tombstone and iceberg ads. More than half had had receptive, unprotected anal sex in the past year, with 32% of them saying that they did not know it carried the highest risk of HIV transmission.

Many also wrongly believed that a positive person was not infectious if he was taking anti-HIV medication. Even more perplexing for safe sex campaigners, the recent surveys revealed that 20% of young gay men said they had problems getting hold of condoms and more than 30% said they did not know that lubricant prevented condoms from breaking. The survey concluded: “Younger men did not know the most basics facts about HIV and its transmission … They were much more likely to experience sexual force and had a lack of confidence about their HIV status.” In fact more than 13% of them said they had been forced into sex at least once in the past year.

In the UK, as in the US, HIV campaigners have concentrated less on the uninfected and promoting medically safe sex, than on advancing positive gay lifestyles.

Edwin Bernard says: “Even in Brighton, where I wear a red ribbon every day and take my pills in public, there is a lack of visibility about HIV. Talking about one’s status in a bar is very unusual. Many people still find it difficult to negotiate safe sex, which I find remarkable considering the marketing that has gone on.”

Activists have begun a root-and-branch reform of HIV prevention work as part of a campaign to re-gay Aids, one that aims to talk up the gay component in the HIV crisis while the government is talking it down, anatomising why large sections of gay Britain are once again susceptible to the virus.

We do not know what will happen with HIV in the UK. The virus is tricky. It bucks trends. Forms new strains. Becomes resistant to the old drugs. And the government has pushed sexual health so far down the agenda that HIV treatment and prevention services were removed from the list of NHS core priorities in 1997 and are not now assessed. In 2001 the ring-fencing of HIV funding was also removed leaving STI clinics on the verge of collapse.

Professor George Kinghorn, clinical director for communicable diseases at Sheffield teaching hospitals, says: “Our sexual health services are in meltdown and 50% of our annual budget had disappeared. Imagine the scandal if I worked in children’s leukaemia and half of the funding was spent elsewhere.”

Consultants across the country echoed his complaints, leading a recent House of Commons health select committee to warn of “a dramatic and spiralling decline in the nation’s sexual health”.

Of course, it would help if the government acknowledge the real nature of the HIV epidemic in the UK. Researcher Ford Hickson says: “The majority of people with HIV in Britain are gay or African or both. The majority of people who will have sex with them will be gay or African or both. Unless we focus our efforts on the needs of gay men and Africans in Britain we have little hope of reducing this national crisis.”

And yet what are the chances that any of this will be spelled out on the billboards going up all over Britain now?

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