Positive thinking: Living with the Aids virus

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More Britons than ever have HIV – but their life expectancy after diagnosis has never been higher

Julian Hows is one of the lucky ones. When he was diagnosed with HIV in 1990, the disease was a death sentence. Now infection with the virus that causes Aids has become a way of life for almost 100,000 people in Britain. Improvements in drug treatment over the past decade have dramatically extended life expectancy for patients with HIV by an average of 16 years, according to research published today.

Julian survived those early years without treatment – the drugs available such as AZT were toxic with unpleasant side-effects and he didn't trust them. "I left my job, went round the world, did some serious damage to my credit card and came home. Then I realised: 'I am not dead yet'."

By 2000, when he was seriously ill with pneumonia and shingles, new combination therapy involving a cocktail of drugs was starting to show dramatic improvements. "There was great suspicion of antiretroviral drugs at first – we didn't know their toxicity or the dosing regime. I was fortunate because just as my health began to deteriorate and I needed treatment they started to get it right."

More than a decade later, Julian, 56, a programme officer with the Global Network of People Living with HIV in the Netherlands, is living proof of the power of the new drugs. But the advance has brought a crisis in its wake. The numbers in treatment have trebled since 2000 at a cost of almost £1bn a year. Efforts to prevent the disease, condemned as "woefully inadequate" by a Lords committee last month, are failing to curb the increase and there are warnings that complacency among young people about the risks has grown, fuelled by the success of treatment.

New diagnoses of HIV acquired in the UK have almost doubled from 1,950 in 2001 to 3,780 in 2010, according to the Health Protection Agency (HPA). More than a quarter of those infected have not been tested and are unaware of their condition, increasing the danger to themselves and the risk that they will pass on the infection. Research published in the British Medical Journal today shows that the average 20-year-old diagnosed with HIV can now expect to live to their mid-60s. The same person diagnosed in the mid-1990s had a life expectancy to age 50. That improvement is down to modern combination drugs that keep the virus in check.

From a killer infection that cut down millions of young men and women in their prime, HIV/Aids has been transformed into a chronic disease that people live with, rather than die from.

Last month's report by the House of Lords HIV and Aids Select Committee noted that just £2.9m was spent on HIV prevention in the UK in the last year compared with £762m on treatment. Avoiding one infection saves treatment costs estimated at £280,000-£360,000. The HPA said the NHS could have saved £1.2 bn if all 3,780 cases infected in the UK in 2010 had been prevented.

The committee was chaired by Lord Norman Fowler who, as Health Secretary in 1986, launched the "Don't die of ignorance" campaign, the first to warn of the Aids pandemic. Lord Fowler said: "In the last 25 years the development of new drugs has dramatically reduced the death toll but that should not encourage a false sense of security. Prevention must be the key policy."

His words were echoed by the authors of today's BMJ study, based on more than 17,000 patients with HIV, of whom 1,248 died between 1996 and 2008. It showed that the earlier patients were diagnosed and the sooner they started treatment the better their outlook.

Doctors assess how far HIV infection has advanced by counting the number of CD4 cells in the blood, a measure of the strength of their immune systems.

The researchers from the University of Bristol, found that patients who were tested and treated early in the course of the infection – when their immune systems, as measured by their CD4 cell counts, were still relatively robust – had the longest life expectancy into their 70s (for those diagnosed at age 20). Those who delayed testing and did not start treatment until the disease was advanced had a life expectancy on average only until their 50s.

Mark Gompels, co-author of the study and director of HIV and Aids Services, North Bristol NHS Trust, said: "These results are very reassuring news for current patients. People are frightened of getting tested because they think they are going to die. But the message of these results is that they should get tested."

"Of those who delay and present to us with late-stage HIV infection, 20 per cent die within six months. Had they been tested and treated early they would have looked forward to a life expectancy of the kind we report."

But Dr Gompels admitted "one worry" about the success of treatment was that it could make people complacent. "We must not let that happen," he said.

Men who have sex with men are at highest risk of contracting the disease in the UK, with new diagnoses up 70 per cent in the past 10 years. An expansion of HIV-testing in the 38 primary care trusts with the highest HIV prevalence was recommended in guidance from the National Institute for Clinical Excellence last March.

For Julian, the future remains bright, though he now faces a new challenge – how to support himself in a retirement he never thought he would see.

"I don't have a pension and I will probably have to work to my late 60s. But I would rather be facing the poverty trap than a six-foot box underground."

Sir Nick Partridge, chief executive of Terrence Higgins Trust, yesterday hailed the advance revealed in the latest research. "It demonstrates why it's so much better to know if you have HIV. Late diagnosis and late treatment mean an earlier grave, so if you've been at risk for HIV, get tested now."

The UK's relationship with HIV has come a long way in 30 years

1981

Reports of pneumonia clusters among gay men in California and New York bring the condition – initially known as Gay Related Immune Deficiency (Grid) – to public attention.

1982

First use of the term Acquired Immune Deficiency Syndrome (Aids).

1983

Terrence Higgins Trust formally established, in memory of the late Terry Higgins, an early Aids victim. UK Aids cases: 17.

1984

Human Immunodeficiency Virus (HIV) isolated in France and US (initially as LAV and HTLV-III).

1985

Body Positive, a self-help group for virus-carriers, established. Royal College of Nursing warns of one million infections by 1991 if trends continue.

1987

"Don't die of ignorance" campaign launched in the UK, along with nationwide HIV testing and pilot needle exchange schemes. AZT, the first anti-retroviral drug, is approved in the US.

Diana, Princess of Wales, defies convention by publicly shaking hands with an Aids patient.

1988

World Aids Day established. London Lighthouse (a residential centre for people with Aids) opens.

1989

Red Ribbon introduced as HIV symbol. AZT found to slow progress of Aids.

1990

John Major announces £42m compensation for haemophiliacs infected with HIV through blood transfusions.

1991

Freddie Mercury dies of Aids.

1993

Aids education becomes mandatory in schools. Kenny Everett and Holly Johnson announce they are HIV-positive. UK Aids cases: 7,045.

1995

Highly Active Antiretroviral Therapy (HAART), the first combination therapy, is approved in the US. In the UK, 25,689 are HIV-positive, 11,872 have Aids, and 1,715 die of Aids.

1996

Protease inhibitors found to be effective in the treatment of HIV.

1997

UK Aids deaths: 737.

1998

First trials of a putative HIV vaccine.

2000

More than 3,000 new diagnoses of HIV infection in the UK – a record.

2001

Major pharmaceutical companies stop opposing the production of generic antiretrovirals.

2002

5,854 new HIV infections diagnosed in the UK (more than twice the figure for 1996).

2003

Many drug companies lower their prices for antiretrovirals in poorer countries. In the UK, 49,500 people are HIV-positive.

2004

Globally, nearly 8,000 people a day are dying from Aids.

2005

G8 leaders pledge universal access to antiretroviral treatment by 2010.

2006

Annual cost of managing the condition in the UK is £500m.

2007

7,734 new HIV diagnoses in the UK – the most ever.

2009

85,600 people in the UK have HIV, of whom about a quarter are unaware of it.

2010

Annual cost of managing HIV in the UK reaches £760m

2011

Number of HIV-positive people in the UK passes 100,000 – but a 20-year-old just diagnosed with the virus has a life expectancy of another 46 years.

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