Humanity, community and condoms for prisoners: The early HIV epidemic through a Covid-19 lens

What the origin story of the Terrence Higgins Trust can teach charities about formulating a human-rights based response to Covid-19. Emily Burt reports

(Photograph: Gordon Rainsford Archive, Bishopsgate Institute)
(Photograph: Gordon Rainsford Archive, Bishopsgate Institute)

Rupert Whitaker can still remember the very first time he saw his former partner, Terry, dancing, a recollection that leaves him unable to contain his laughter nearly four decades later.

“It was a very strange mix between a Slinky [the popular helical spring toy] and a belly dancer,” he says. “I wasn’t judgemental at the time, but even I thought ‘what the hell is going on’.”

Terry was a rare person, he says. Welsh, with a broad sense of humour tempered by a pronounced cynical streak, he worked as a Commons reporter for Hansard and moonlighted as a nightclub DJ after dark. He was kind and he loved to cook. He was also one of the first people in the UK to die from an Aids-related illness, aged just 37, on 4 July 1982.

Amid the fear and stigma that swirled around what was then known as “Gay-Related Immune Deficiency”, or Grid, Whitaker (left) and a group of Terry’s friends founded an organisation in his name in an effort to humanise attitudes towards the virus. The Terrence Higgins Trust would become Europe’s first HIV/Aids support charity, providing grass-roots community support and education to the hardest-hit communities and lobbying an unsympathetic government to raise awareness of the health crisis.

Today, Whitaker is a patron of the trust, a respected British psychiatrist and immunologist, founder of the Tuke Institute and one of Europe’s longest-surviving people living with HIV. In conversation with Third Sector, he reflects on his memories of the charity’s first years on the London front line of the early HIV epidemic and the lessons they might contain for charities responding to Covid-19 today.

“Act according to the greatest need”

Fear of the profound consequences that HIV would have for the gay community was the key driver for setting up the Terry Higgins Trust (renamed the Terrence Higgins Trust upon gaining charitable status in 1984), Whitaker says.

Just a year before Terry’s death, the first cases had been reported in the US, when the Centers for Disease Control and Prevention identified an unusual strain of pneumonia in a group of five gay men based in Los Angeles. By 1983, the US had experienced at least 1,000 fatalities and 3,000 reported cases of the virus.

“The first thing we knew was that we needed to do something because of the impact HIV was going to have on the community,” he says.

“It was Martyn [Butler, a friend of Terry’s and a co-founder of the trust] who suggested an organisation to try to limit its impact, because it was starting to spread and none of us had any idea why.”

There was still minimal understanding of the virus in the early 1980s and little support from the medical sector, according to Whitaker. “At the time [of Terry’s death] I suggested to his consultant, who was a nasty piece of work, that it might have been this American disease,” he says. “I was quickly dismissed and ignored.”

When he later wrote to the consultant seeking a diagnosis, his enquiries were rebuffed a second time: “He said I wasn’t family, even though I was the person who had to clean his body and pay for his funeral.”

Supporting the needs of the gay community in the absence of adequate government support and medical care profoundly influenced the trust’s direction and mission from the beginning, he explains. The founders had initially agreed to focus on research and awareness as their core aims, but as the virus spread among members of the gay community the demand for direct services and education very quickly overtook it.

“One of the most interesting parallels between then and now was the organising and empowerment of groups of volunteers to help take care of each other,” Whitaker says. Among the first services launched by the charity was a buddying and home-help system for people who had contracted HIV.

“We organised everything, from helping people to get food when they could not get it themselves and cleaning their flats because they could not clean for themselves, to protecting them from infections. We trained volunteers to clean a vulnerable person’s flat properly and how to use 10 per cent bleach solution judiciously.”

As the epidemic advanced, there were a number of even more complex needs that volunteers would step up to fulfil. “How to do basic end-of-life care and even advanced nursing, especially in America,” Whitaker says (he lived in the US for several years in the 1980s).

“You would end up wiping the bums of guys who could not even go to the loo themselves any more. Changing nappies or diapers, administering medication, if the nurse could not get there, through lines that went straight into the chest.”

The incredible kindness of volunteers and mutual-aid groups that have organised across the UK to help the most vulnerable in their communities over the lockdown weeks has been very reminiscent of that time, Whitaker says. It could also be an opportunity for charities to support and facilitate the energy of galvanised people to its fullest capacity and engage them in their cause areas in the process.

“It helps to raise your charitable profile and get people engaged with your work if you have the means to say ‘you want to know how to do this? We can help you do it the most efficient way’,” he says. “Of course, that’s assuming they have any funding left now.”

“Fight discrimination at every turn”

Besides the health crisis triggered by the spreading epidemic, the first 10 years of HIV and Aids would provoke an international panic, amplified by politics and the media, that led to the widespread suspicion and shunning of those who belonged to high-risk groups, including gay people.

Aids was formally referred to as “Gay-Related Immune Deficiency”, or Grid, until 1982, when the same immune deficiency syndrome was found in Haitian communities and heterosexual women, and colloquially described as everything from “homosexual cancer” to “the gay plague” (as in the picture).

“There was a lot of argument about whether HIV was down to lifestyle factors,” Whitaker says. “It was rife with homophobia. When I lecture students today, I ask them to try to picture ascribing genetic diseases to particular minority groups. Most believe you’d never get away with it.”

And yet, Covid-19 has evoked a rash of discriminatory behaviours and attitudes towards east Asian communities around the world. US President Donald Trump repeatedly referred to Covid-19 as “the Chinese virus” during press briefings in March this year (while denying it promoted xenophobic views) and has speculated that the virus was created in a Chinese laboratory. National media outlets have reported incidents of harassment and assault against Asian students living in the UK. The charity Stop Hate UK has reported a sharp spike in the number of helpline calls from people experiencing racism, discrimination and verbal abuse, arising from perceptions that they are members of the Chinese community and therefore likely to be carriers of the coronavirus.

Taking a human-rights based approach to any major health crisis, Whitaker says, demands that charities be aware of any actions on their part that might fuel the stigmatisation of, or discrimination against, specific groups or communities, and clearly challenge it whenever it is seen from others. “Even if this is not affecting your communities directly, you should always call out discriminatory behaviours,” he says. “I would hope that, given the history of HIV and stigmatisation, any individual or organisation with a history in that cause area would speak up to say ‘it’s totally unacceptable to use phrases like “Chinese virus”’. But really, anyone in the sector who has experienced discrimination and those who have not, need to unify and hit back.”

“Seize attention”

Alongside galvanising their local communities to assist people affected by HIV, the trust worked closely with both local newspapers and the LGBT media to distribute relevant and factual information about the virus and fight the spread of misinformation and what we’d now call “fake news”.

At the same time, a growing movement of activists was harnessing dramatic techniques to hold governments, mainstream media and other key players to account for their lack of compassion and inhumanity in responding to the epidemic.

“In America, people would take the bodies of their deceased partners, place them in coffins outside the White House and say ‘this is due to government neglect’,” Whitaker says.

Known as “political funerals”, these were one tactic of the Aids Coalition to Unleash Power (Act Up), an international grass-roots political group working to end the epidemic, which played a prominent role in activism through the 1980s and the 1990s.

The group’s London branch, Whitaker says, was responsible for some equally “idiosyncratic and memorable street protests”. When prisons became a major point of concern in 1989, because unprotected sex was rife and inmates were not allowed access to contraceptives, activists gathered outside Pentonville prison and catapulted condoms over the walls. In the same year activists hosted a mass “die-in” outside the offices of The Sunday Telegraph to protest homophobic reporting and misrepresentation of the HIV/Aids crisis.

“Shaming, unfortunately, is sometimes necessary,” Whitaker says. “Just remember that it’s a shaming of inhumanity and neglect.” He pauses. “There are actors within the Covid-19 pandemic who need to be shamed.”

 What are the best ways for the sector to inflict pressure on those with the power to change it? Whitaker says it helps to be “creative and targeted in the approach taken”. Combining analysis and policy with visible action is one of the best ways to create a “pincer movement”, he adds.

“If, for example, you were a charity supporting care workers in nursing homes who can’t get personal protective equipment and are then contracting Covid-19 and transmitting it to the inhabitants of the care homes, there could be some very impactful ways of making that crisis seen, visible and not easily forgettable,” he says.

The first thing we knew was that we needed to do something because of the impact HIV was going to have on the community

Rupert Whitaker, co-founder, Terrence Higgins Trust

Thirty-five years after the trust was founded, effective drug treatments enable most people with HIV to enjoy long and healthy lives, and few people in the UK now develop serious HIV-related illnesses. The longer-term health and societal consequences of Covid-19 are far less clear.

But for charities looking to spearhead human rights-led responses to any health crises, whether acute or evolving, Whitaker stresses that actions must be rooted in understanding people’s behaviour. Despite HIV and Covid-19 being fundamentally different epidemics, the social drivers that influence how people react to them are the same. “You have to factor in identity, fear and a loss of self-determination,” he says.

And the best way to solidify a human-led response? Bring the people you are supporting along from the beginning. “Fold in your volunteers and service users, and make them feel a part of that process,” Whitaker advises. “Be collaborative and intersectional in realising solutions. Use your allies well, look for commonalities in your causes and push together to create the greatest possible effect.”


The Terrence Higgins Trust and Covid-19

In the first weeks of the Covid-19 pandemic, the government erroneously sent a text to thousands of people living with HIV, informing them that they were in a high-risk group and needed to shield and completely self-isolate for three months, despite no evidence or guidance that the measure was necessary. The mistake is a classic example of the lack of understanding that persists around HIV, says the executive director of digital and communications at the Terrence Higgins Trust, Dominic Edwardes.

“A lot of people called our helpline,” he says. “Obviously it’s an alarming text to receive, but if you are living with HIV and your immune system is not compromised you don’t need to shelter.”

The charity has seen an increased number of calls to its support helpline, and requests for its counselling service, which has been moved online in response to social-distancing measures, have almost doubled since early March. The organisation is also considering a reinvention of its original buddying service to support vulnerable members of the HIV-positive community who are having to shelter or require extra support.

“We’re in discussions with our service users about whether they want that,” Edwardes says. “If the demand is there it will throw a line right back to the beginning of the charity.”

Today the organisation is the largest voluntary sector provider of HIV and sexual health services in the country, continuing its work supporting the estimated 103,800 people living with HIV in the UK. The trust still has strong connections with HIV-positive people who were diagnosed in the 1980s and 1990s, as well as those who have been more recently diagnosed. “They are a key constituent,” Edwardes says. “We have an online group of people called Before ’96 [the year combination anti-retroviral therapies became widely available], whose lives were significantly affected by HIV.” Many suffered ill-health and financial hardship, and many were told they would die, he says: “Some people now refer to themselves as ‘long-term survivors’.”

And peer-to-peer and community support remain bedrocks for the charity. “As soon as you hear the word ‘HIV’, a lot of the time you stop listening to your consultant,” Edwardes says. “You want to speak to someone else with HIV who can listen to your story.”

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