This article is part of Telescope: The New AIDS Epidemic, a deep-dive investigation into the modern face of a disease that transformed the world.
Britain’s iconic HIV tombstone advert of the 1980s had a simple, yet effective, message: “AIDS — Don’t die of ignorance.”
Thirty-odd years after the spot sent shock waves through the U.K., HIV is no longer a death sentence. Antiretroviral medication allows those infected with the virus to live a long, healthy life — and also ensure they won’t transmit it to their sexual partners.
But that progress has also generated new risks — and made it more difficult to craft a message that will break through to those who need to hear it.
“It’s a contradiction,” says Alex Causton-Ronaldson, a campaign mentor at Youth Stop AIDS. “The message is: Don't be complacent and don’t get it, but if you do get it, it’s not that bad.”
Syphilis rates have also reached an all-time high in Europe, with cases increasing by 70 percent since 2010.
Causton-Ronaldson was diagnosed in 2014. Since then, there has been a seismic shift in how HIV is prevented and treated.
The use of pre-exposure prophylaxis (PrEP) — using antiretrovirals to prevent the virus from taking hold — has beefed up the ever-growing prevention arsenal. And seminal studies proving that “undetectable” truly means “untransmittable” have changed the game for people living with HIV.
But at the same time, sex has also changed, with the rise of the hookup culture, spurred on by dating apps, chemsex and ubiquitous social media. Casual, anonymous sex is now safer (and easier) than ever.
For young people,“HIV is not the terrifying thing it was, even when I was diagnosed in 2014,” says Causton-Ronaldson. “They have an almost detached and removed view. Because to them, they’ve got PrEP if they want to, and they don’t necessarily worry about contracting HIV.”
Recent advances in prevention — including the global "undetectable equals untransmittable" movement or “U=U" — has changed sexual behaviors | Joe Klamar/AFP via Getty Images
The result, when it comes to public health, is a mixed blessing. In the EU, rates of new HIV cases are dropping, with AIDS diagnoses in free fall. But rates of many other STIs, such as gonorrhea and syphilis, are on the rise.
The latest figures from the European Centre for Disease Prevention and Control show that rates of gonorrhea were up by 17 percent in 2017, compared with 2016. Syphilis rates have also reached an all-time high in Europe, with cases increasing by 70 percent since 2010.
A study released in December indicated that three-quarters of PrEP users have also been diagnosed with other STIs, and a systematic review of dozens of studies revealed a “high burden” of STIs among people taking PrEP.
The authors frame the findings as highlighting the opportunity for testing and treating other STIs.
But they're also fuel for the debate about whether treatments like PrEP encourage risky behavior, or whether they result in more detection of other diseases because more at-risk people get tested.
Risky business
Rosalie Hayes, senior policy and campaigns officer at the National AIDS Trust, rejects the “moral hazard” argument and points to higher testing rates as the reason behind the spike in recorded cases.
“Once you start accessing PrEP, you’re actually getting tested more regularly for STIs, so you will see an increase in diagnoses,” she said. “So actually that’s a real benefit.”
Either way, there’s no doubt that for some people, recent advances in prevention — including the global "undetectable equals untransmittable" movement or “U=U" — has changed sexual behaviors.
Basic messages around safe sex, particularly for young men who have sex with men, can be missing from the dialogue.
A recent Australian study on gay men’s relationship agreements found a large increase in relationships that allowed condomless sex with casual partners. Almost 40 percent of PrEP users in relationships had such agreements.
Michael Evangeli, a reader in clinical psychology at Royal Holloway, University of London, says that for some people living with HIV, being virally suppressed has meant that they are able to “engage in a whole variety of sexual behaviors that they wouldn’t necessarily be engaging in.”
Among communities where U=U is well-understood and where there is high PrEP use, such as men who have sex with men (MSM) in London, “lots of the anxieties and concerns around HIV transmission, and also about HIV disclosure, are massively reduced,” he said.
An installation by the Dutch AIDS foundation in Amsterdam | Robin van Lonkhuijsen/AFP via Getty Images
But has this actually changed the anxiety around disclosure? Evangeli isn’t so sure.
“Even [for] people living with HIV who accept, understand and are aware of the U=U message, it doesn’t necessarily result in a reduction in anxiety about telling other people they are living with HIV,” he said.
Those left behind
For some, however, the advent of U=U in some parts of the world has had no effect on their sexual relationships.
“Everybody who’s not in the position to become undetectable is left behind,” says Tamás Bereczky, the communications lead of the European Patients’ Academy and a member of the European AIDS Treatment Group.
He points to areas in Central and Eastern Europe, where access to testing and treatment is dismal. Treatment and routine testing are essential for U=U to be effective — but the ECDC reports that late diagnosis sits at just under 50 percent for these regions, compared with about 35 percent for people from Western Europe.
Starting this September, sex and relationship education will be compulsory in English schools.
“How are [people living there] supposed to become undetectable? It’s not that they don’t get the message, it’s that they don’t have access,” he said.
Those who argue for the message to be brought to individuals living in these communities are “completely ignorant of the political realities of these people,” he added.
A UNAIDS report in 2018 found that a “broadly threatening treatment environment” for key populations “discourages HIV testing and treatment” in Eastern Europe and Central Asia.
The kids aren’t all right
Even in countries such as the U.K., which have robust infrastructure for prevention, testing and treatment, basic messages around safe sex, particularly for young men who have sex with men, can be missing from the dialogue.
Hayes points to the National AIDS Trust’s 2015 Boys Who Like Boys study, which showed that a third of respondents hadn’t received any information on HIV transmission and safer sex in their school sex education.
Things haven’t gotten much better since then. In a November poll commissioned by the Sex Education Forum, nearly 30 percent of students said they hadn’t learned all they needed to about LGBTQ issues, and 1 in 6 said that the sex education at school was bad or very bad.
A member of Aides Association in Paris in 2019 | AFP via Getty Images
“I think that’s quite demonstrative of the state of English sex education,” she says.
Change is coming. Starting this September, sex and relationship education will be compulsory in English schools. And last year, the government issued the first new guidance on the topic in 20 years.
But for now, with schools falling short, young people get their information about safe sex elsewhere. And that’s not on TV or billboards, or even Facebook, for that matter. They’re on Instagram, YouTube and Snapchat.
“I don’t think we’ve got the messaging, or the channels, right when it comes to communicating with young people around HIV,” said Causton-Ronaldson, whose day job is in marketing, with a particular focus on young people. “You see a lot of billboard ads out there and that’s not necessarily where they are engaging.”
“Don’t die of ignorance” may have shocked the British public, but it “did the job it needed to do,” Causton-Ronaldson said. “The problem is, there has been nothing of that level of mass-market awareness that has happened since then.”
UPDATE: This article has been updated to clarify that Alex Causton-Ronaldson was diagnosed in 2014.
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