Despite progress, HIV stigma 'biggest roadblock' to eradication

People with HIV now have near-average life expectancy, due to scientific advances. Numbers of those who can transmit the condition are declining. Yet, fear and stigma endure, stunting further progress in combating the disease and its wider effects.

When 33-year-old Alex Sparrowhawk from Manchester was first diagnosed with HIV, he kept quiet about it, telling only his closest friends. It was a “big secret,” he said. But after realizing how many misconceptions and negative connotations there were surrounding his status, three years later he decided he’d had enough. He would be more open about having HIV.

It was hard at first. “There’s a lot of fear surrounding HIV. People think you can get it from kissing,” he told WikiTribune. Now, almost 11 years after he was diagnosed, Sparrowhawk is nonchalant. Every day after dinner he takes a pill out of a pot on his key chain and pops it in his mouth to treat the virus. “It’s as simple as that.”

Globally, as many as 36.9 million people were living with HIV at the end of 2017, with east and southern Africa most affected. In the UK, an estimated 101,200 people are living with the virus, while in the United States the figure is 1.1 million.

HIV as an epidemic first became apparent in 1981 after the deaths of 121 previously healthy gay men in the United States; then, fear about the virus was intense. This was enhanced by international headlines about its fatal consequences and misinformation about how it was transmitted. Since the beginning of the epidemic, about 35 million people have died of HIV according to the World Health Organization.

But being diagnosed with HIV is no longer akin to a death sentence.

In 2018, people with a HIV-positive status can live just as long as those without the infection. Newly developed treatments make HIV undetectable and untransmittable. Anti-retroviral medications taken by those with HIV – like Sparrowhawk – are used to treat the virus, while pre-exposure prophylaxis (PrEP) drugs to prevent transmission are taken by those who might be at risk of contracting it.

Annual figures published by Public Health England on September 4 showed a 17 percent drop in HIV cases across the UK in 2017, and a drop of 28 percent in the past two years. New cases were at their lowest level since 2000.

PrEP is currently being offered in several countries including the UK and United States to high-risk groups and people in communities in which HIV is more common. While men who have sex with men (MSM) and those of black African ethnicity are disproportionately affected by HIV, it can affect anyone. In 2016, 19 percent and 22 percent of diagnoses reported were among heterosexual men and women respectively.

But widespread and relentless stigma surrounding HIV is the “last roadblock” to eradicating new cases, said Professor Jane Anderson, director of the centre for the study of sexual health and HIV at Homerton University Hospital in London.

The “stigma kills” and is “as dangerous as ever,” Anderson said during an event at London’s BFI Imax on August 21 celebrating 70 years of Britain’s national health service, TEDxNHS.

Dating scene ‘minefield’ for the HIV-positive

The most recent survey by the Stigma Index UK, a study project that tracks HIV stigma, found that half of people living with HIV in the UK reported feeling shame, guilt or self-blame in relation to their HIV status. One in five said they felt suicidal.

The stigma is most evident on the dating scene in Britain, which is a “minefield”, said Sparrowhawk.

“Sometimes guys just completely go silent and that’s the last you hear of them. And you just think, ‘Did you not want to find out?’”

Men on effective HIV treatment won’t spread the virus, according to a new study

He said that the aversion some feel to starting relationships with HIV positive partners is actually putting people at further risk of becoming exposed to the virus.

“What worries me is that there’s people out there who are happy to have sex without condoms without even thinking about it with guys who don’t know their status… That’s somehow less of a concern to them than having sex with guys who’ve got HIV but who aren’t detectable, who we know can’t transmit it.”

Men on effective HIV treatment won’t spread the virus, according to a new landmark study by University College London and the University of Copenhagen. Antiretroviral medicines reduce the virus to levels that can’t be detected or transmitted. This advancement colloquially shortened to the phrase “U = U” (undetectable = untransmittable).

According to a recent YouGov poll, more than one-third (35 percent) of people living in the UK would reject somebody on a dating app who was HIV positive. A further third (31 percent) said they “didn’t know.”

“If you’re worried about HIV then the safest kind of people that you have sex with are people who already have got it who are undetectable because they know their status and they’re keeping it under control,” said Sparrowhawk. “And getting that kind of idea around into people’s minds is probably the hardest thing.”

A photo of Alex Sparrowhawk
Alex Sparrowhawk, 33, was diagnosed with HIV in 2009. He is now HIV Prevention England’s program officer and campaigns to prevent new transmissions of the virus and end the stigma associated with it. Photo courtesy Alex Sparrowhawk

An ‘extra pair of gloves’

But the stigma stretches far beyond the dating scene. Those with HIV are even being treated unfairly by health service staff, said HIV specialist Jane Anderson.

Instances such as doctors putting on an extra pair of gloves during examinations and underlying assumptions about HIV are resulting in an “insidious” stigma, according to Anderson.

She tells the story of one of her patients, Michael, who was upset after the doctor testing him for illness unrelated to his HIV status put on an extra pair of gloves before examining him.

For some, HIV stigma endures in the form of outdated beliefs and misconceptions.

Thirty years on from the beginning of the HIV/AIDS epidemic, there is still reduced awareness and knowledge surrounding HIV.

Only 45 percent of the UK population could correctly identify the ways in which HIV is and isn’t transmitted, according to a 2014 report by the National AIDS Trust.

The label of danger has also been connected to sustaining homophobic attitudes.

Sparrowhawk cited friends who were denied tattoos, and others who were turned away from piercing shops.

Only 45 percent of the UK population could correctly identify the ways in which HIV is and isn’t transmitted, according to a 2014 report by the National AIDS Trust.

Sparrowhawk said the lack of effective medicines to treat HIV and AIDS in the 1980s has driven much of the fear and misinformation about HIV around today.

While men who have sex with men, and black African communities are disproportionately affected by HIV, 19 percent and 22 percent of diagnoses reported in 2016 in the UK were among heterosexual men and women respectively. Photo by: Project-128 via Flickr

“When we think about HIV people automatically reverse back to the Eighties when there wasn’t effective medication, when people were dying and when people didn’t just have HIV, they had AIDS and they were dying as a result of that.”

He added: “It’s important to update people, make them realize that actually today people can live well, they can have normal life and people don’t need to be afraid of people with HIV because there’s nothing to be afraid of.”

The stigma has also been connected to enduring homophobic attitudes towards LGBT people.

British laws enhance the stigma, said Cham Abebe Kifetew, project manager of HIV Prevention England (HPE), the national HIV prevention program at the Terrence Higgins Trust, an HIV awareness advocacy charity.

The number of HIV diagnoses in gay and bisexual men fell in 2017 – Public Health England

In England and Wales, the Offences Against the Person Act 1861 can be used to prosecute people for reckless or intentional HIV transmission. “Non-disclosure” laws are also in place in the United States to prosecute those who do not disclose their HIV status, or put unknowing sexual partners at risk.

Given that antiretroviral medicines like PrEP have “revolutionised” treatment, HIV stigma now has “more impact than the virus itself,” said Abebe Kifetew.

Pre-exposure prophylaxis is the process of people at very high risk of being exposed to HIV taking HIV medicines daily to lower their chances of infection.

Currently, PrEP is only in trial phase in England and is not readily available to patients, although NHS Scotland provides PrEP there. Wales has started a PrEPARED trial, providing the medicine from sexual health clinics to those who are at high risk of coming into contact with HIV. The trial will run for three years.

A sign in Zambia reads "Know your HIV status"
HIV is most common in East and Southern Africa. Here, a sign warns people in Zambia to get tested for HIV. Photo by: Jon Rawlinson via Flickr

Positive progress stunted

The number of those diagnosed with HIV has fallen drastically since 1981, the beginning of a global, decades-long HIV/AIDS crisis that prompted public fear and prejudice.

For the first time since the beginning of the UK epidemic, the number of HIV diagnoses in gay and bisexual men fell in 2017, according to a Public Health England report. High levels of condom use, earlier testing, increasing availability of PrEP and earlier initiation of ART have led to such progress, the report said.

Progress has been drastic, but stigma is stopping further progress, according to advocates WikiTribune consulted.

Due to not getting tested soon enough, many are being diagnosed too late, a key issue in the UK according to Avert, an international HIV and AIDS charity based in Brighton, England. Late diagnosis resulted in 442 people dying from AIDS-related illnesses in the UK in 2016.

Now the program officer for HIV Prevention England, the arm of the Terrence Higgins Trust that coordinates HIV prevention programs across the country, Sparrowhawk is putting his experiences of prejudice into action. The charity launched the “It Starts With Me” campaign to raise awareness of preventative measures, treatment and diagnosis and to reduce stigma associated with HIV.

In the United States, the Centers for Disease Control and Prevention also launched a campaign against HIV stigma that included a guide to talking about HIV.

In 2016, the United Nations pledged to reduce the number of people infected with HIV to fewer than 500,000 by 2020. The organization also committed to end the stigma associated with HIV by 2020.

But getting HIV cases to zero will require eliminating the stigma that is still widespread in health services in the UK and abroad, said Jane Anderson. If the stigma persists, she says, so will the infection.

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