Positive reaction: Fighting the HIV virus

DOMINIC remembers only too well how he first learned about HIV. It was the mid-1980s and the impact of the virus hit home hard. “I lost a lot of very close and very dear friends,” he says. “At that time, people were dying within weeks or months of being diagnosed and it was a very painful death.”

He decided to become a counsellor, to help people cope with an incurable virus that was still barely understood. “I knew the gay community had to stand up and fight,” he says. “It was a feeling of we’ve got to do something ourselves if the government isn’t prepared to do it. We’re not going to let our friends die, we’ll do what ever we can to support them.”

It’s 30 years since the first symptoms of HIV infection emerged. Back in 1981 clusters of pneumonia were reported among gay men in California and New York. Inexplicable red splotches (later identified as Karposi’s sarcoma) were appearing on some men’s skin, others lost huge amounts of weight, becoming emaciated and weakened by a virus that, at that time, didn’t even have a name.

In San Francisco, the gay community united and fought back. Their aim was to raise awareness, to care for those who were sick and to highlight government inaction around the virus. Their struggle is the story of We Were Here, a moving documentary to be shown in Scottish cinemas later this month, which through first person testimony shows how people in California coped with an epidemic that ravaged their community.

But what about in Scotland? What was happening here? And more than that, what’s changed in the three decades since?

Speak to people who were around at the time, many of whom still work in the sector, and they can recall only too clearly the fear and paranoia that accompanied the emergence of HIV. There was ignorance about the causes of the virus and prejudice about who was affected. Terms such as “gay plague” were common, fear was rife. The stigma that surrounded the virus was a key reason for many people to become involved in the fight against it. Both Ali Lord, now centre manager and welfare rights officer at Terrence Higgins Trust (THT) in Glasgow and Martha Baillie, senior manager of community projects at Waverley Care in Edinburgh, started out as volunteer buddies for people who were HIV positive, motivated to get involved because they saw the impact of HIV on their gay friends. More than two decades later, they’re still involved.

It’s easy to forget that in Scotland there was a time when people believed that we were facing an epidemic that was going to be severe. The high numbers of intravenous drug users affected in Edinburgh – leading to the label “HIV capital of Europe” being slapped on the city – skewed the picture. But what is also clear is that in Scotland, as in San Francisco, the response to HIV/Aids which originated in and around the gay community – activism and awareness-raising and the fight for specialist care and government action – helped to avert the worst of what had been set to unfold.

Today, though, among the frontline workers who support people living with HIV, what you find is a mixed picture in which excitement about huge improvements in testing and treatment for HIV is tempered by a palpable disappointment that the social stigma that surrounds the virus has hardly abated while infection rates are rising.

Between 2004 and 2010, 400 people were diagnosed HIV positive each year in Scotland. More than ever before. In the UK as a whole, new diagnoses of HIV in the UK have almost doubled from 1,950 in 2001 to 3,780 in 2010. It’s certainly true that there has been good news in recent years for those living with HIV in terms of drug treatments and life expectancy, which has risen by 15 years in the last decade. But the fact remains – there is still no cure.

Ali Lord remembers in 1994 when she trained to become a buddy for Scottish Aids Monitor, that the task of volunteers was largely about helping people prepare for death. Now, it’s very different. THT volunteers may accompany people to appointments or support them through specific tasks, but the emphasis is on living. But Lord is concerned that in some ways, history is repeating.

“People no longer think that becoming HIV is a death sentence, which has led to increased risk-taking behaviours,” she says, “and for some people, they just don’t think HIV is an issue any more.

“I met a guy about 18 months ago. He’s 21, straight, he’s never done drugs, never had sex other than with women. He was very, very poorly for a long time. After about a year somebody thought of testing him for HIV. He was HIV positive. He just didn’t know what it was. He thought HIV was a gay disease, he didn’t realise it could impact on him.”

Men who have sex with men are still at highest risk of contracting HIV, but new diagnoses of the virus contracted from sex between women and men continue to be a concern and, according to those in the field, this is particularly true among the African community. HIV can affect anyone and the earlier it is diagnosed, the better the treatment options and the longer life expectancy so raising awareness and promoting testing remains absolutely vital.

For Roy Kilpatrick, who last month retired as the chief executive of HIV Scotland, the national HIV policy charity, looking back to when the virus emerged, he says it’s easy to forget how bad things were.

“People do forget though that so many people affected by HIV at the time were young, talented, productive people. I know one man who has a photograph of himself with his pals sitting on a sofa. They’re all gone, he’s the only one left. He’s HIV positive but he’s been lucky. He’s still here.”

He says that although it was clear that there was a real crisis, the community response was “ordered and dignified”, people recognised what was happening and took action. Kilpatrick singles out people such as Derek Ogg QC, who set up Scottish Aids Monitor in 1983 and Dr Sandy MacMillan, consultant in genito-urinary medicine and HIV medicine for Lothian Health, as being among the key figures who were both brave enough to stand up and be counted when it came to HIV and far-sighted and creative about tackling the virus as a public health matter.

“The work done in Scotland was pioneering in terms of public health,” Kilpatrick says. “They really did set things in motion not only in Scotland but in the whole of the UK.”

For Dominic, 2005 marked the year that his own contact with HIV took another twist. Nearly 20 years after he first counselled people living with the virus, he tested positive. Working in Australia at the time, he suffered a fall while out walking with friends that left him with a broken back and a shattered left kneecap. Airlifted to hospital, it was while in intensive care that he developed a high fever, prompting doctors to search for the cause. Eventually they found it was HIV.

The accident meant that Dominic was unsure whether he’d walk again. His HIV diagnosis on top of this was a devastating blow. After four months in hospital, Dominic returned to the UK by air ambulance. He spent a month in a UK hospital before needing to go into a nursing home to learn how to walk again.

“The nursing home kept on cancelling when I was due to go in,” says Dominic, now 62. “It finally transpired that they were frightened because I was HIV positive. They had to have three visits from the senior HIV nursing officer to reassure them that they had nothing to worry about.”

Dominic says that when he arrived the apprehension of the staff was written all over their faces. He was given his own cutlery and crockery so that it didn’t get mixed in with the other patients.

“I was shocked,” he says. “I was there for three months and gradually the staff became friendlier. They relaxed and realised that it was OK to drink out of the same cup as me. But this was in 2005. Not a long time ago.”

Lord says it’s not uncommon to still come across people who are concerned about sharing cups of tea or using the same toilets as those who are HIV positive. And Martha Baillie too, is acutely aware of the prejudice that still surrounds HIV.

“Inevitably, an awful lot of the stigma is about ignorance,” she says. “Often what shifts people from thinking that somehow they’re at risk from just sitting next to someone is when they actually meet someone who is HIV positive.”

But she acknowledges that disclosure remains tricky. “People who live with HIV are terrified of that kind of rejection. Quite rightly because once you put that information out there it stops being yours and you have no control over it.”

For Kilpatrick it’s another instance in which history appears to be repeating. Specialist care available for people living with HIV in Scotland is, he says, “top class” and support services such as THT and Waverley Care do vital work, but in terms of a general awareness of what HIV is and what risks it poses, there’s still work to be done.

Kilpatrick refers to research he did in the late 1980s when the virus was first emerging which showed that the one factor which determined whether people would take measures to protect themselves and their partners from HIV was proximity to the epidemic.

“If people felt close to it the more likely they were to protect themselves,” he says. “Now, people don’t feel close to it, HIV is not visible any more. In some ways we might be thankful for that, but it means that people are more complacent.”

For Dominic, living with HIV has been difficult. Rejected by his family because of his sexuality, he decided to move to Edinburgh, away from his friends, because he couldn’t face revealing his HIV status. It’s taken time for him to find the combination of drugs to live with being HIV positive. Once again, it’s support that has made his life bearable.

“Without places like Waverley Care I don’t know what we would do,” he says. “I don’t know what I would have done.”

Looking back over decades it makes sense that people involved in the fight against HIV/Aids feel a range of emotions. Of course there’s joy about the improvements in treatment and care, but there’s also disappointment that stigma still surrounds HIV, impacting on those who live with the virus but also frustrating efforts to raise awareness of what remains an incurable disease. Back in the 1980s there were badges with the slogan “silence = death”. Drug therapies have solved half of that equation, the other remains a challenge.

• We Were Here will be in cinemas from 25 November.