Lucky to be living with HIV

"Apart from the medication, it doesn't have any effect on my life at all," he says. "It is not something I think about really."

It's a very different situation from when HIV first came to public attention. Twenty years ago, an HIV diagnosis was seen as a death sentence. The virus attacks the body's immune system, making it vulnerable to otherwise innocuous infections. At most, sufferers were given ten years before the virus led to Aids, which almost invariably proved fatal.

Now, HIV is a manageable illness. Former Culture Secretary Chris Smith last month confirmed he had been diagnosed HIV positive in 1987, and still managed to perform the arduous duties of a Cabinet minister. Andy Bell, singer with Erasure, and Holly Johnson, former frontman of Frankie Goes to Hollywood, are among those in the world of showbusiness who have been living with HIV in the long-term.

But if HIV is no longer the killer it once was, it has not lost its power to frighten.

Tony had resigned himself to being diagnosed with HIV even before he took the test. The 39-year-old, originally from Bishop Auckland and now living in Gateshead, had been in a relationship for nine years, but in 1998 his partner fell ill. But even then there was no reason to suspect HIV.

His partner was taken to hospital with kidney failure, but before he was put on a dialysis machine, he was told he would have to take an HIV test. It came back positive.

"Neither of us had been ill before that, and there was nothing to flag up there might be anything wrong, but when he was told he was HIV positive we both automatically assumed that was it.

"After that, he just gave up. Whatever fight he had in him, he just gave up. It was a downward spiral from then on," Tony says.

His partner's pancreas burst and he died of blood poisoning, unrelated to being HIV positive, on July 29, 1998. It was November before Tony went for a test himself.

"There was so much other stuff going on, and the worst thing that could ever happen was my partner passing away; nothing could be as bad as losing him. I had other things on my mind than thinking I was only going to live a few years.

"I was sure that I was going to be positive, so it was not a shock when the result came back. The nurse said she was quite concerned I had taken it so well, but I had three months to get used to it. My first thoughts were that I was going to die," he says.

Tests revealed he had a CD4 count of 283 and a viral load of 280,000. CD4 cells are the white blood cells which fight infection: a healthy person can have up to 1,200; under 200 you are susceptible to Aids-related illnesses. Viral load measures the amount of copies of the HIV virus per pin head of blood. Without treatment, Tony was told he would be dead within five years.

He went straight on to combination therapy, a still relatively new treatment which uses a combination of drugs to fight the virus. Every day he had to take eight tablets - three in the morning, two in the afternoon and three before he went to bed. It was a strict regime: the pills had to be taken at the same time each day and missing a single dose meant there was a chance the virus could build up a resistance to the treatment.

Compared with a five year life expectancy, he was told he could hope for life between ten and 20 years on combination therapy. An improvement, but still an uncomfortable prospect for the then 33-year-old. "It was a scary thought," he admits.

He was warned there would be side effects, although he was unprepared for quite how brutal they would be.

"I was very ill for a couple of months. It was a horrible, horrible period of my life. The only way to describe it is just having a really bad hangover 24 hours a day," he says.

He was nauseous, weak and suffered terrible headaches. Most of the time he stayed in bed. It was the end of January before he started to feel better.

He had been given time off from his job as a supermarket manager when his partner was ill, but decided to leave work. He enrolled on a counselling course at college, with the aim of helping people who had lost their partners, and started volunteer work for a health project in Gateshead. A year later, he got a job as a community worker in Newcastle for Mesmac, an organisation which works with gay and bisexual men.

Six months after starting combination therapy, his viral load had fallen from 280,000 to under 40, which makes it undetectable, and where it has stayed ever since. His CD4 count is around the 1,000 mark, healthier than most people.

Even though the drugs were working well, Tony has since moved onto a new type of combination therapy, this one involving just three tablets, one in the afternoon and two at night. With fewer tablets, it was easier to stick to, and had fewer side effects: he no longer felt sick every morning, although he does have vivid dreams now.

Anti-HIV treatments have come a long way since the early days when AZT was the only weapon against the virus, says James Woods, development worker for Teesside Positive Action, which works with people who are HIV positive. Now, HIV is classed as a chronic and manageable illness, a similar category to diabetes.

"We used to be going to six, seven, eight funerals a year. The highest was 13. The last person we had who died from an HIV-related illness was a couple of years ago," he says.

"Providing they look after themselves and stick to their drug regime, their prognosis is pretty much the same as yours or mine. There is no reason why HIV should get the better of them, if the drugs keep working and they don't develop a resistance."

But, as has been the case throughout the short history of HIV, public image hasn't always kept up with the facts. It was only two years ago that EastEnders' Mark Fowler, who had long been HIV positive, suddenly developed full-blown Aids, or what is now generally called advanced HIV.

"We had so many calls from people saying, 'When is this going to happen to me?'," says James.

But there are worries among groups working in this sector that if HIV is no longer seen as a killer, the changes in behaviour which helped prevent the most pessimistic predictions of the 1980s coming true may be reversed. It is 17 years since the last safer sex campaign, Don't Die of Ignorance, and HIV workers fear the message is being forgotten.

Around 50,000 people are estimated to be living with HIV in the UK, but almost 6,000 of those were diagnosed in 2003, the latest year for which there are accurate figures, representing a 20 per cent increase on the previous year. The largest increase is among heterosexual women. Just as worryingly, around 16 per cent of new infections are resistant to existing drugs, and just last weekend a new strain of HIV, also resistant to known drugs, was identified in New York.

Tony picks up the odd cold, but otherwise has remained healthy since his original diagnosis. He went through a period of not looking for new partners, mainly because he didn't know how to approach telling them he was HIV positive, but for the last three years has been in a relationship with a man who is HIV negative.

"I didn't tell him straight away because I didn't know how he would react and I didn't want to scare him off. When I did tell him, a couple of months into the relationship, it was not an issue for him. The only issue was the fact I hadn't told him before," he says.

He may be HIV positive, but Tony feels lucky. Lucky that the drugs have worked for him, lucky that he has stayed healthy, and lucky that he was not diagnosed in the days before drugs proved effective. Strange as it may have seemed 20 years ago, HIV does not play a big part in his life.

"It is not something I worry about because I know my immune system is working very well at the moment. At one point, I might have had only five or ten years left. Now, I have got as long as anybody else. That is quite a nice thought. I think I'm one of the lucky ones."