HIV: Thirty years after the first diagnosis, Britain heads for 100,000 cases

While Aids experts say prevention campaigns are not altering sexual behaviour, medical progress means the disease need not be fatal

(jason alden)

The number of people living with HIV in Britain will top 100,000 for the first time next year, The Independent on Sunday has learnt. The toll of those infected, to be announced this week by the Health Protection Agency (HPA), is revealed as the world marks 30 years since the first cases of the disease were diagnosed.

The growing number of British HIV patients is due to the spread of the disease within the UK, as opposed to infections acquired abroad. The amount of people contracting the disease in Britain each year has doubled in the past decade, with some 3,800 diagnosed last year.

Epidemiologists at the HPA now predict that there will be more than 100,000 HIV-positive people – diagnosed and undiagnosed – in Britain by the end of 2012.

Health professionals said yesterday that Britain's progress towards this figure is more of a cause for optimism than it might first appear. They argued that the high numbers illustrate that in three decades, HIV has moved from something akin to a death sentence to a condition that – if managed – can allow sufferers a normal life expectancy.

Dr Valerie Delpech, the HPA's head of national HIV surveillance, said: "It's remarkable to be heading towards 100,000 people alive with HIV. In the early days, when we were diagnosing we were also counting as many deaths. That's changed dramatically. It's an extraordinary leap in medicine, that means we've gone from a fatal disease to a manageable chronic disease with a normal life expectancy – if you catch it early."

Since the first cases were discovered in Los Angeles 30 years ago, 115,000 people have been diagnosed in the UK. Of these, 27,000 have developed full-blown Aids and 20,000 have died.

But prevention is still a cause for concern as the doubling of cases suggests that safe sex campaigns are not hitting home.

Despite the increase in the number of diagnoses, the budget for HIV services in London has been cut by 20 per cent: the chief executives of London primary care trusts slashed spending for 2011-12 by £516,000, prompting protests from public health experts.

Diane Abbott, Labour's spokeswoman on public health, said: "The situation is very worrying. We're cutting services and we could go backwards. We need more outreach and more services, and to work with community groups."

The majority of new infections are diagnosed in gay men or in people who contracted the disease while abroad, although the number of heterosexuals diagnosed is also increasing. If all the UK-acquired infections were prevented, some £1.2bn could be saved in lifetime treatment costs.

Sir Nick Partridge, chief executive of the Terrence Higgins Trust, said: "Clearly, we want to do better in HIV prevention in the UK, particularly among gay men. The numbers would be much higher if we hadn't had the prevention campaigns of the past 25 years, and nine out of 10 gay men now use condoms.

"But in the past 10 years there's been a year-on-year decrease in local funding of HIV prevention work. The national programme has been sustained, but cutting local services adds to the invisibility of HIV."

Although the condition is now manageable if retroviral drugs are available and there is an early diagnosis, a cure is still a long way off, and patients in many countries do not have access to any treatment.

On Wednesday, world leaders will gather in New York for the biggest global meeting to tackle the pandemic for a decade. The UN's High Level Meeting on Aids will chart progress since a world assembly on the issue 10 years ago and will lay out future plans for eliminating the disease. The global sum given to tackling the disease fell last year for the first time since it was founded.

Hopes that Britain might lead the way have been dampened by a position paper published ahead of the meeting by the Department for International Development: the paper does not set any targets for global treatment nor pledge any sums of money.

Diarmaid McDonald, co-ordinator of the Stop Aids Campaign, said: "The paper is indicative of the fact that there's been a change of focus within this government. That's something we're concerned about: no government should feel the war against Aids is won yet.

"In the past, UK governments have played a significant role in driving forward the response to HIV, but we need to see some urgency from this government," he added.

Stephen O'Brien, Minister for International Development, said: "This government is absolutely committed to tackling the devastating scourge of HIV and Aids in developing countries.

"This week, at the UN meeting, I will be working closely with partners to ensure the fight against HIV and Aids remains high on the international development agenda."

Case studies...

Rupert Whitaker, 48

Was the partner of Terrence Higgins, one of the first Britons to die of Aids, and helped set up the trust in his name

"I was sick before I met Terry. After Terry died I got worse; I was expected to die within the year. I was just 19 and I thought that was it. But I'm still here. There's a huge backlog of grief from so many deaths, but it's not something I live with every day.

Nowadays, if people avoid getting tested it's because they don't want to be discriminated against; then, it was because you didn't want to know if you were going to die.

I've been on antiretroviral drugs since the 1990s, which was when you had the Lazarus syndrome: people literally getting up off their death beds.

Now my health is stable; I run two or three times a week. It is quite possible to have long-term relationships when one person has HIV. I've had two relationships since Terry and both were with people who were negative. It was beyond my imagination 25 years ago that I could be like this now."

Matt Gregory, 42

Discovered he was HIV positive in 1985

"As a haemophiliac, I knew I was high risk. When I went for the test, the nurses and doctors seemed frightened; I think a lot of them felt they killed us. There was no counselling, they just said I had about three years to live. Being a straight man with what was being described as the 'gay plague' was difficult. I was just 16 and the nurses told me never to have sex. Of the 1,200 haemophiliacs diagnosed that year only about 340 of us are alive."

Kampamba Chomba, 37

Was diagnosed in 1995

"White people feel HIV is not their problem, but I caught it from a white guy. I've lived in Britain since 2006. It's harder here, people are much more judgemental. In Zambia, there was so much awareness, it was in your face. Here, people pretend it's not happening. I'm on antiretrovirals now and my 14-month-old son, Mikey, is HIV negative."

Amanda Nicolson, 31

Learned she was HIV positive last year

"I just went for a routine sexual health screening and it came back positive. It was completely out of the blue. I've always been quite careful, but I had an ex-boyfriend who had persuaded me to have unprotected sex when we'd been together three months. He told me he'd been tested, but he can't have been. I knew it could happen to anyone, I just didn't think it would be me."

Garry Brough, 44

Discovered he was HIV positive in 1991

"I went for a regular check-up and expected it to be negative. I can barely remember how the clinic told me, I just knew it meant death. I'd had protected sex the vast majority of the time but there was someone I was seeing who wanted not to use condoms. It turned out he was positive and he'd lied to me. He died in an Aids ward two years later, still denying he had HIV. The drugs breakthrough came just in time for me."