It was a photograph that went around the world.
The image of Britain’s Princess Diana shaking hands with AIDS patients at a London hospital in 1987 was hailed as a milestone in the battle against the stigma surrounding people with the virus.
Yet more than three decades later, despite recent moves by television star, Jonathan Van Ness, and former rugby international, Gareth Thomas, to come out as HIV-positive, HIV/AIDS campaigners and medical experts say the fight is far from won.
“In the past decades, we have come a long way to challenge those stereotypes that stigmatise and discriminate against people living with HIV,” said Luisa Cabal, a director at UNAIDS.
“Unfortunately, it is still pervasive, and those patterns of stigma and discrimination are reinforced through laws, policies and practices (around the world),” she told the Thomson Reuters Foundation.
The announcements by Van Ness, star of the Netflix series, Queer Eye, and former Wales rugby captain Thomas spurred news stories around the world, garnering support from fellow celebrities as well as members of the British royal family.
Yet behind the headlines, the estimated 37 million people who live with HIV risk losing their jobs, partners, and even their lives if they disclose their status, campaigners say.
Knock-backs on dating apps are common, many users report, and occasionally disclosure can tip into violence.
Over the past decade, there have been reports of HIV-positive people in Uganda, Australia, and the United States, being murdered after admitting their status to their partners.
Thomas said he had decided to go public in the face of possible blackmail threats.
According to the World Health Organization, since the epidemic took root in the 1980s, more than 75 million people have been infected with HIV. Thirty-two million have died of AIDS-related illnesses.
However, in the West, the death toll and HIV transmission rates have fallen dramatically, thanks to early testing, the introduction of effective medication, and a daily pill called PrEP, that cuts the risk of infection by as much as 99%.
In September, Britain recorded its lowest rates of HIV diagnoses in nearly 20 years, having dropped by almost a third since 2015, according to Public Health England (PHE).
The Australian state of New South Wales saw a 25% fall in new reported infections 12 months after the roll-out of PrEP.
And in the US city of San Francisco, once the epicentre of the epidemic, the number of new cases has fallen by almost 60% over the past decade.
Yet the public perception of HIV as a deadly virus remains, said Matthew Hodson, executive director of NAM, a British HIV/AIDS information charity.
This is precisely why the impact of celebrities disclosing their HIV status should not be underestimated, he added.
“What’s really exciting about the way that Gareth Thomas and Jonathan Van Ness have used their public platforms is that the way they talk about HIV has changed.
“Gareth Thomas competed in an Ironman (triathlon) the day after his announcement, so he is far from the standard image of someone wasting away in a hospital bed,” Hodson added.
Failing to tell a sexual partner you are HIV-positive is a crime in more than 70 countries, a law cited by campaigners as a gateway to official discrimination.
According to the Centers for Disease Control and Prevention, 19 US states have similar statutes.
“Societies worldwide will only change if we firstly make it clear that people with HIV are not infectious if on medications,” said Ash Kotak, leader of #AIDSMemoryUK, which aims to establish a memorial to HIV/AIDS in Britain.
UNAIDS lists 48 countries and territories worldwide that have HIV-related travel restrictions. Australia, for example, requires an HIV test before granting permanent residency.
Nineteen countries deport non-nationals who are HIV-positive, including Saudi Arabia and Egypt.
“These are laws and regulations that continue to reinforce those stigmatising attitudes,” said UNAIDS’ Cabal.
“It sends a message, unfortunately, to many people around the world who are fearful of testing.”
In Britain, the approximately 100,000 people living with HIV are protected by the Equality Act 2010 from discrimination.
Yet pushback and rejection persist, including for job applicants, said Rosalie Hayes, senior policy and campaigns officer for HIV/AIDS charity, the National AIDS Trust (NAT).
“We have heard of many instances of people being turned down for jobs when they said they had HIV,” she told the Thomson Reuters Foundation.
Coping with a diagnosis and its fallout can lead to higher rates of mental health issues.
A 2014 survey – from PHE, NAT and British charity Positively UK – found that 40% of the more than 4,000 people living with HIV questioned said they had been diagnosed with a mental health condition. One in four said they were anxious or depressed.
NAM said suicide accounts for 2% of all deaths of people with HIV in England and Wales – twice the rate of the general population.
“Self-stigma” – people unwilling to disclose their status to others – can also prove fatal, said Ralf Jurgens, a senior co-ordinator at The Global Fund to fight AIDS, TB and Malaria.
“This is the stigma and discrimination that ultimately prevents people from accessing the services they need most,” he said.
This is why any attempt to change the perception of what is now a treatable condition is crucial, said Alex Sparrowhawk, a programme officer at HIV and sexual health charity, Terrence Higgins Trust.
“Having role models like Gareth Thomas is fantastic,” he said, in terms of showing that HIV affects all types of people.
“It is stigma that puts people off from getting tested in the first place,” Sparrowhawk added. “And until we’re testing the people that have HIV, but are unaware of it, we are not going to end the transmission of HIV.”
-Hugo Greenhalgh – Thomson Reuters Foundation