Change in Waverley Centre's work shows HIV is no longer a death sentence

It might sound like a horrendously unsympathetic way to deal with the prospect of an impending death, and something that pre-dates the era of grief counselling, but the scenario David Johnson is referring to goes back just 15 years.

It may be difficult to comprehend, but as recently as the last decade, a diagnosis of HIV was the equivalent of being handed a death sentence.

There was no cure, no treatment and no hope for many.

All anyone could do was help those infected with the killer illness get through their last months, weeks and days as painlessly as possible.

And, of course, help them to prepare for their deaths and for the futures of the family members they were leaving behind.

David, who is the director of Scotland's leading HIV charity Waverley Care, which is based in Edinburgh, carries with him the haunting memories of the dozens of people who planned their own funerals and the families who said goodbye to their loved ones for the last time.

"We had mums who were working with staff members on memory boxes," he recalls. "These boxes were mums leaving mementos and letters to their children.

A mum who was not expecting to see her daughter get married would leave her a pair of earrings saying, 'I got married in these, I hope you can too'."

As chilling as it sounds, it was all parents infected with HIV could do to be a part of their children's futures as the illness ate away at their immune systems.

This unfamiliar, unknown virus was sweeping the world, claiming tens of thousands of lives, and the UK and Edinburgh did not escape its devastating impact.Britain's response was a massive public awareness campaign which injected fear into those who watched the adverts bearing terrifying tombstones and received stark government information leaflets through their doors.

In Edinburgh, the virus was spreading quickly, mainly among intravenous drug users who were sharing needles, and health professionals began preparing for the worst.

The result was the creation of Waverley Care in 1989 and its first challenge was to build a hospice.

David explains: "It was very much seen that HIV was here, there was no treatment, it was a death sentence and it was really urgent and imperative that a hospice was built.

"Testing in the drug-using community showed high levels of HIV and there was real concern that given these high levels, there could be high levels in other communities as well.

"It was a concern that this could become an uncontrollable epidemic.

"In the early days it was thought that Edinburgh might need four hospices."

Milestone House, in Oxgangs, opened in February 1991 as an 18-bed unit and was the first purpose-built hospice in the UK.

"In the very early days at Milestone I can think of two families where three adult brothers died there, and they all had families," David recalls.

"We had a very strong policy of working with the whole family and

working with children and preparing them for that loss.

"People either went into Milestone for respite or to die.

"There were no drugs in relation to HIV back then."

The introduction of HIV medicines known as antiretrovirals (ARVs) - which slow the progression of the virus and prolong life - came in the mid-1990s.

From this point on, HIV did not have to mean certain death.

"It very quickly became apparent that for most people they were very successful in holding HIV infection at bay," David explains.

"People were able to survive and as time went on and more drugs were developed, it became clear that ARVs were making a huge difference.

"For most people there is no reason why they shouldn't be able to live a fairly straightforward life."

ARVs changed the focus of Waverley Care from preparation for death to preparation for the future.

The charity became - and still is to this day - an essential tool for people living with HIV, offering them everything from counselling to help them deal with their diagnosis to advice about medication, employability and relationships. It also now does a lot of prevention work with at-risk communities as well as going into schools to educate youngsters.

"Where we started from was very much caring for people with HIV and we still do that but we are also now much more conscious of our role in prevention and how we work both with people living with HIV and people at risk of HIV," David says.

"We have had some very large events with the African community, working with them to raise awareness of HIV prevention and the importance of early testing so we are kind of joining up the dots in a way.

"In Edinburgh, in the beginning, HIV was seen primarily about intravenous drug use and gay men.

"One of the great success stories is that you see very few new infections amongst drug users because of the introduction of needle exchange schemes.

"The remainder are sexual infections and that's really split between gay and bisexual men and the heterosexual community.

"Within the heterosexual community are probably people who acquired the infection abroad, in sub-Saharan Africa.

"There's been a big profile change in that sense.

"When I started I don't think we saw any people from sub-Saharan Africa, whereas we now have dedicated workers working with that community."

David adds that the Pope's recent comments about condom usage are a great weapon to have in the war against HIV.

"There's no doubt about it, if people could sustain 100 per cent condom use it would dramatically reduce the number of HIV infections," he says.

"I think it's really interesting that the Pope has said there may be health reasons where in some instances using condoms is OK and that has to be hugely welcomed. For Catholic communities and particularly Catholic communities in developing parts of the world, the fact that the comments have been made that condom use is acceptable will have a huge impact."

Despite all the considerable progress that has been made within Waverley Care's 21-year lifetime, the issue of stigma is one which has still not improved.

The illness is still viewed as something which is the "fault" of the infected, forcing those who are HIV positive - and their families - to keep it a secret.

Waverley Care plays a huge role in helping adults and children deal with living with such a massive secret.

"We do still have people saying in relation to people with HIV, 'well it's their own fault, they knew how to prevent it, they shouldn't have got themselves in that position'," says David.

"One of the unfortunate things about that is that people are very wary about coming out and talking about their status, people are very concerned about being stigmatised.

"We still hear about cases where people experience a neighbour putting graffiti on their door, we still hear about people saying they are HIV positive in their work place and then a month or two later their post being made redundant. In that sense it remains a rather shameful secret."

He adds that a change in attitude will not come about until the correct information finds its way into the mainstream.

A good place to start, he believes, is with the adults of the future.

"We did some schools training recently and were really quite alarmed about some of the misconceptions people have," he says.

"Some people think that you can get it from kissing. It's a long time now since the '80s and those adverts on TV and there hasn't been a big public prevention campaign since then.

"I think it would be good to have a public campaign that gets the balance right between prevention and the fact it's not a death sentence any more."

In the meantime, Waverley Care will continue the work it has been doing for 21 years and continue to educate people and fight for the rights of those living with HIV and Hepatitis C.

"I feel very proud of what Waverley Care has achieved," says David. "We have worked very hard not to make it some kind of ghetto-ised condition."

But he adds: "We still have a long way to go in terms of attitude. I look forward to the day when asking how people caught HIV is a complete non-issue."