Dying of ignorance

Published on 29/11/2003 00:00

Pauline is the widow of an African diplomat.

Pauline, 47, and her family had lived a privileged life. Her husband’s next posting was to be as an ambassador for their country. She was also well paid, working in investment. But her husband’s social standing could not save his life. When the money ran out, the drugs stopped and he died.

Following his death, Pauline came to the UK to visit her sister in London. She arrived on a six-month visitor’s visa and planned to return home after a month or so. However, within a matter of weeks she began to feel unwell: nothing specific, but the symptoms made her wonder whether she should be tested for HIV. "I knew what had killed my husband, even if no one wanted to discuss it. In my country there is such shame and stigma to this. I did wonder if I could be at risk, but when I raised the possibility with my sister she went mad and said I should never discuss such a thing."

But Pauline then experienced a bad incidence of herpes. Knowing her sister’s attitude, she came to Edinburgh to visit friends and made an appointment to see a doctor there. "I was in such pain, but I didn’t know what to do. I have never been sick and was embarrassed by what was happening," she explains between sobs. "I kept thinking, ‘I’m not going to die the way my husband died.’ I was so frightened."

A nephew was training to be a doctor and persuaded Pauline to go for an HIV test. Pauline was told that not only was she HIV-positive, but that the high levels in her blood meant she was susceptible to opportunistic infections - hence the herpes and her nagging cold. She was given less than two years to live. Pauline now faces a terrible dilemma: does she stay in Edinburgh, separated from her three children in Africa and under the constant threat of deportation so she can get combination drug therapy and live long enough to fund them through school, or does she go home to be with them and face a certain death?

Pauline is just one of the victims of the Aids epidemic that is tearing its way through Africa. In the west, Aids has all but become a non-story. Anti-retrovirals and drug combination therapies have made the disease a chronic but treatable condition. World Aids Day (1 December) may now come and go as little more than an annual ritual and an excuse to pin a ribbon on your lapel. For the first time this year there will be no candle-lit vigil in Edinburgh, once dubbed the European Aids capital, to remember the dead.

But far from retreating, the plague we prepared for in this country has instead advanced somewhere else. Aids in Africa is a catastrophe without end. It has killed 18.8 million people worldwide since the early 1980s, but the majority of deaths - 16 million - have been in Africa. Drugs now exist to treat people with HIV, but in Africa they are not readily available.

The United Nations estimates there are now 34.3 million living with the virus - 24.5 million of those live in sub-Saharan Africa. Millions more, possibly hundreds of millions more, will become infected. In Malawi, one of the poorest African countries, the official HIV prevalence rate is 16 per cent among the 15 to 49 age group. It is higher elsewhere: Botswana (35 per cent), Zimbabwe (25 per cent), Lesotho (23 per cent) and Zambia (20 per cent). In South Africa, half of all teenagers are estimated to be HIV-positive.

By contrast, Britain has a 0.11 per cent prevalence rate. The fact that Africans living in the UK may also be at risk and that they may take that rate higher ought to be clear, but how we tackle the problem is less obvious. HIV experts in Scotland know how easily particular groups become scapegoats for the virus. A task force of Lothian medical professionals is in Africa now, hoping to offer lessons from our past. The visit could prove to be a two-way street: on Monday, at a conference in Peebles, new figures will reveal that there has been a significant rise in the numbers of HIV-positive people living in Scotland and that this can be largely attributed to Africans living here. "People have always been frightened of infection," says Dr Gordon Scott, a consultant and head of the Genito Urinary Clinic at Edinburgh Royal Infirmary. "Chuck in sex and race, and that fear is multiplied by another factor."

Dr Scott remembers well how moralising attached itself to HIV. The sudden appearance of the Kaposi’s sarcoma cancer in large numbers of gay men in New York City in the early 1980s led doctors to recognise what is now called Aids. Until then, Kaposi’s sarcoma had been rare, and few experts suspected it was related to a virus. It was 1983 when the first patients, a group of gay men with unusual symptoms including pneumonia and rare cancers resulting from suppression of their immune systems, turned up at Dr Scott’s clinic.

Across the city, the first cases of drug-related HIV were also emerging. Infectious diseases specialist Dr Ray Brettle had been in the US for a year in 1982, when he first heard about Aids. "People were talking about this new condition and trying to work out how it was spread and what it was. The common link seemed to be sex, but no one really knew. Just before I was due to come back to Edinburgh, someone from the Blood Transfusion Service phoned and asked me to bring anything back that might help them work out what was going on."

Dr Brettle packed some clinical slides in his bag that he hoped would help. It was lab staff for the BTS who were becoming most interested in the possibility of a blood-born virus. They believed they had a unique population in the haemophiliacs in Scotland, because they had only ever been given Scottish blood. They decided to test samples of their blood for this mystery virus alongside a control group of donor blood samples, some of which were from drug users.

The results were startling: one in three haemophiliacs was infected, as was one in two drug users. The year was 1985. Over the next six months, plans were put in place to screen all blood donated to the BTS. "We were going to start looking for an infection in people that weren’t yet sick and that we could offer no treatment for," says Brettle.

Pursuing the virus occupied most of Brettle’s time. He and his colleagues looked for ways to minimise the risks to the wider population. Hysteria grew and there were calls for infected people to be shipped to isolated islands. Brettle, along with people such as Dr Roy Robertson, a GP in Edinburgh’s Muirhouse, became more interested in the link between HIV and intravenous drug use. Brettle can now map out what factors combined in Edinburgh to produce the explosion of Aids among drug users.

First, heroin became widely and cheaply available. Simultaneously, the supply of cannabis disappeared and people started injecting heroin for the first time. The police responded by confiscating drug addicts’ syringes, and clean needles became scarce as chemists stopped selling them to addicts. This combination had explosive results. In the early 1980s, one needle was being used by perhaps 30 or 40 addicts. As soon as HIV was introduced to the city, reportedly by a drug addict who had spent time in Spain, it spread rapidly. By 1989, there were 1,700 people in Scotland who had been diagnosed HIV-positive - 1,000 of them in Edinburgh.

In October 1985, Brettle established a counselling clinic where drug users could be tested anonymously for HIV. If positive, they were asked back for the result and counselling and offered medical clinics. The inducement was they would be given free, clean needles, health advice and help with applying for state benefits. It worked well, but in 1986 the possibility that it was the act of injecting that made HIV more likely to progress to Aids was raised. Brettle’s response was to work out how to offer addicts a drug they did not need to inject. His solution was methadone. "You look at the ways you can make a community safe, and you don’t simply tell them to stop having sex or taking drugs, because that isn’t realistic," he says. "What we were able to do was offer condoms to make sex safe and methadone so people didn’t need to inject."

It made sense, and it avoided the devastating result of Aids that had been predicted in Edinburgh. There were many deaths in those early days, and today we are no nearer a cure, but people with Aids - their lives now extended by new drug therapies - are confronted not by imminent death but by a "chronic manageable disease". Far from opening the planned four hospices for HIV patients, Milestone House, Scotland’s only Aids hospice, is now to be a respite care establishment.

The HIV epidemic is now in its third decade. Much has been learned, not least by the medical profession. Generations have had to understand the importance of personal responsibility. Society’s mindset about sex and drugs has shifted. HIV has exposed social mores and bigotry. The stigma of HIV and Aids has become almost as difficult to deal with as the virus itself, and the problems posed by the pandemic in Africa - and HIV prevalence among Africans living in the UK - may be no easier to handle.

Waverley Care Solas in Edinburgh has been one of the first HIV groups to recognise and respond to this problem. It already had Zimbabwean Kapula Simonde working for it as a support worker, providing an invaluable insight into the African community living in Scotland. Waverley has now employed two more Africans, Eunice Sinyemu and Senanu Sedzro, to work with the African population in Lothian and raise awareness about testing for HIV.

Sinyemu is from Zimbabwe, and not only is her country badly affected but a cousin has also died of the virus in Africa. She says there are many cultural hurdles to overcome before Africans will come forward for testing. "Traditionally, Africans only go to hospital if they are too ill to work, so often they are presenting quite late on in their illness. There is also a huge stigma about HIV among our people. It is seen as a curse. People also assume that a positive HIV result could end up with them being sent home to die. Stigma, fear and prejudice could result in this group disappearing, and if you consider that if you are African you should presume you are HIV-positive until shown otherwise, then this is not a good situation."

Walking to work last week, Sinyemu was confronted by a white woman with a pushchair, who told her she should go back where she came from. "Some people hate you already because of the colour of your skin," she says. "They don’t see you as anything other than a stereotype. What will happen when the issue of HIV is added in to that?"

Monday: Gethin Chamberlain tells a heartbreaking story from the African crossroads where truck-drivers and teenage prostitutes help Aids continue its devastating spread across the continent