Complacency the 'number one enemy' in reaching zero HIV targets

“There is now a danger that has become a threat to us all. It is a deadly disease and there is no known cure.”

This was the terrifying warning blaring out from TV screens in households across Britain in the mid-1980s.

“The virus can be passed during sexual intercourse with an infected person. Anyone can get it, man or woman. So far, it’s been confined to small groups but it’s spreading,” the message continued.

Coupled with the haunting image of a tombstone and eerie horror film music, this was the first time most people had heard the word AIDS – and it sparked fear in everyone.

The now infamous tombstone campaign, which also saw leaflets delivered to every household in the country, was the government’s bold response to a crisis that the health secretary of the day, Norman Fowler, later described as a “life and death situation”.

Speaking to The Guardian in 2017, Fowler said: “I was reading a note the other day from the chief medical officer at the time and some of the predictions as to what could happen were terrifying – we were talking millions and millions of people becoming infected.

“That’s why we launched what is still the biggest public health campaign there’s ever been in this country with leaflets sent out to every home.”

There’s no doubt the campaign was a success – according to Fowler, follow-up research revealed that 90 per cent of the public recognised the advert and a “vast number” changed their behaviour because if it.

But there is also the view that the shock factor of the campaign – which anyone who experienced the advert in the 80s can still testify to – has led to the lasting stigma associated with HIV and AIDS. And it is this stigma that remains one of the the biggest barriers to ending the epidemic once and for all.

“I think you could probably rightly criticise them now for the campaign that has led to the systematic stigmatisation of people living with HIV,” says Nathan Sparling, chief executive of HIV Scotland. “But if you were there at the time, you didn’t really know what you were dealing with and it was spreading quite fast and you needed to stop it, so I think it did its job.”

Sparling says that the main problem has been what has happened since that public information film – or, to be more accurate, what hasn’t happened.

“I would say that it’s not the fault of what was done at the time, it’s more that we’ve not done anything since,” he explains. “We’ve done a lot of really targeted campaigns to gay and bisexual men, drug users or the migrant population coming in from high prevalent countries and we target them specifically around testing and treatment, but we’ve never said to the public in any systematic way that people live long and healthy lives, that you can’t transmit it if you’re on treatment and I think that’s the failure in the stigmatisation of people living with HIV.

“We’ve never had a public awareness campaign in Scotland since the tombstone campaign which basically told people to be scared of it,” continues Sparling. “We’ve never updated the public’s knowledge of that.”

This is one of the reasons behind HIV Scotland’s new campaign, called ZEROHIV, which aims to eradicate new HIV infections, as well as HIV-related stigma and HIV-related deaths, by 2030.

The awareness-raising drive will see a poster campaign launched throughout sexual health services, GP surgeries and hospitals, giving clear messages on how you can’t become infected – 45 per cent of students surveyed by HIV Scotland think it can be transmitted through spitting – information about testing, advice on Prep, and information about people living with HIV into old age.

“These four clear messages we think will at least start to challenge that stigma,” says Sparling. “We think it’s achievable by 2030. In Scotland we’ve perhaps got into a mindset where we are kind of happy with how we are dealing with HIV, so I think it needs to essentially be reinvigorated as a response for us to get there by 2030.”

by Tom Freeman

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It is almost inconceivable to think that this target is within our grasp when the future looked so bleak in the 80s and early 90s.

Just 36 years ago, in 1983, the first outbreak of HIV was recorded in Edinburgh among injecting drug users. Within six months, more than 60 per cent of this drug-using community was infected, and the city quickly became known as the ‘AIDS capital of Europe’.

Ten years later, the publication of a novel written by former heroin user Irvine Welsh introduced a broader knowledge and understanding of HIV and the issues surrounding the virus to the wider public.

And when Trainspotting was released as a film, it brought the death of heroin addict Tommy from AIDS-related toxoplasmosis to the living rooms of the unwitting masses.

“I think [Trainspotting] challenged people’s assertions that it was the gay disease,” explains Sparling. “It was called GRIDS [gay-related immune deficiency] when it was first found in America. So, having something like Trainspotting that was actually looking at a real issue in Edinburgh, it started to open up people’s eyes to the scale of the problem we faced.

“It probably allowed people to be having a bit more conversations about HIV and not be as fearful of it but to this day, we still have massive problems with stigma and misinformation and myths around it.”

Before the advent of antiretroviral drugs (ARVs) – which stop the virus replicating in the body, allowing the immune system to repair itself – being diagnosed with HIV was a death sentence.

But the development of effective treatment means that people with HIV can now live into old age and in the majority of cases, the drugs are so effective they lead to the virus being undetectable in the body and therefore untransmittable.

“Back then it was anywhere from weeks to a year depending on when they were diagnosed,” explains Sparling. “When ARVs came in, you had a longer life expectancy. One of the major flaws of our response in Scotland was we never actually told people living with HIV that they would stay alive at that point, so you’ve got a group of people who always expected to die but now are living and ageing well, so there’s a bit of survivor’s guilt among some people living with HIV. A lot of them saw their friends die and they were healthy enough to make it through to a time when ARVs came into being and now they’re in their 50s and 60s.”

One of the biggest medical breakthroughs in the battle against HIV has been the introduction of Prep, a drug which dramatically reduces the risk of being infected.

Last July, Scotland became the first country in the UK to offer Prep to eligible patients. Predominantly used by gay and bisexual men, in the first year there were 1,872 people using it.

“One of the things I would say is for nearly 30 years, gay and bisexual men have been told that they will get HIV if they have sex. Having something like Prep, where we’re now telling people that HIV is no longer inevitable, you can actually stop HIV, is a groundbreaking piece of work. It’s cheaper to prescribe a drug that’s less than £30 per person per month for a short period than it is to pay average lifetime costs of £360,000 per person for people living with HIV.”

In Scotland, there are around 5,200 people living with HIV and around 350 new infections every year. On top of that, it is estimated there are between 500 and 800 people living with undiagnosed HIV.

Sparling warns that “complacency is the number one enemy” in terms of Scotland reaching its zero HIV targets by 2030, and identifying the undiagnosed people living with HIV is paramount to preventing new HIV infections.

“We are very close to ending the epidemic in Scotland. But we’ve seen it with syphilis – we stopped testing for syphilis because it was no longer an issue. Syphilis rates in Scotland are now higher than they’ve ever been.

“I think that the concern for me is that we’re doing all this good work and there’s now approximately 500 people that are undiagnosed with HIV in Scotland so there’s a lot more work needed to find these people. But when you’ve got GPs or secondary care physicians who aren’t testing for HIV despite there being quite clear guidelines about when and where you should test for HIV, then I think complacency is a big issue.

“There’s a realisation that we can get there but it just takes a bit of extra effort. Even ten years ago, I don’t think it would have been imaginable.”

While Scotland’s response to the HIV epidemic has been monumental, it is not the only public health issue that has been tackled in a way that also would have been unimaginable in the not too distant past.

Many people would have smoked their last cigarette in their local pub just 13 years ago this month, but it seems like almost a lifetime ago in terms of today’s public attitude towards smoking.

“In the years ahead, people will look back on today as the day that Scotland took the largest single step to improve its health for generations,” the then first minister Jack McConnell declared on the first day of the smoking ban.

Since then, tobacco products in supermarkets and shops have been moved out of sight, the number of children exposed to second-hand smoke at home has been cut and smoke-free NHS grounds policies have been introduced.

But while introducing laws to force people into change is undoubtedly effective – the success of minimum unit pricing and the sugar tax will be measured by their ability to reduce alcohol-related illnesses and obesity – it cannot be the only method employed to tackle the complexity of public health issues.

One public health expert tells Holyrood that striking the balance between legislation and changing attitudes is key when it comes to addressing the biggest threats to Scotland’s population.

“Do you have to legislate to make public health initiatives work?” he asks. “The evidence is, when you do, it does actually make a difference, but you don’t want to become the nanny state where you legislate for everything.

“How do you get that balance between legislation and persuasion changing community norms? That’s one of the things that has been given a lot of thought to in Scotland.

“It’s about finding and using the right legislative levers, not assuming legislation is the right answer to everything.”

That’s why Scotland’s response to public health is based on a more holistic approach, which is evident in the fact it has become one of the first countries in the world to develop a national strategy to deal with the problem of social isolation and loneliness.

And knife crime, while obviously illegal, is dealt with on a number of different levels, looking at the environment and relationships which can lead to people getting involved in gangs and violent crime in the first place, and working on the basis that violence is preventable.

Scotland’s Violence Reduction Unit, which was set up in 2005, has been so successful it has been used as a model to tackle the rising levels of knife crime south of the border.

“Regarding knife crime, you can legislate all you like – it is illegal – but that’s not solving the problem,” the public health expert adds. “You form relationships at a very early age. If families are chaotic, attachments don’t form. There are no strong role models. This matters especially for boys in an area where there’s a prevalence of violence or drug taking. We need to understand and deal with the reason behind the cycle of violence.”

Education plays a key part in addressing all public health issues from drug abuse to obesity, and Sparling is quick to point out that the same applies when dealing with HIV.

“Two young people every month are diagnosed with HIV in Scotland,” says Sparling. “There was a case where a young person was diagnosed with HIV and asked the clinician what it was because they’d never heard of it.

“There’s been new guidance sent to schools around relationships, sexual health and parenthood education, which is useful, but without a commitment that young people learn a set amount about sexual health and HIV then I think we’re failing young people.

“It’s problematic if we don’t think that young people are having sex. If we’re not talking about it and they’re doing it anyway, they’re probably doing it in an unsafe

way.”