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We still have a long way to go to end HIV stigma

4 min read

This week marks 40 years since Terry Higgins died of an Aids-related illness and his partner Rupert Whitaker and I set about founding an organisation in his honour to prevent what happened to him and is happening to untold others.

His story is retold in the BBC’s Aids: The Unheard Tapes, which aired its first episode last week. I hope it gives viewers a sense of the man we lost – not just the virus we were up against.

The documentary is no It’s A Sin – the smash hit Channel 4 drama from Russell T Davies that was as much about the laughs and gay love we enjoyed in the 80s as the subsequent loss. While my notebook with the names of the first 50 Aids funerals and the very physical way I was ejected from gay bars – because early Terrence Higgins Trust leaflets were “bad for business” – are the inspiration for at least a few lines of the character Karl Benning, mine and Rupert’s story is more stark. We lived Jill’s loss and trauma of the drama’s final episode (set in 1991) back in 1982 and it played on constant repeat in the years that followed, until effective treatment became available in the late 90s.

Only 37 per cent of those in the UK would kiss someone living with HIV – even less would go on a first date

The opening episode of Aids: The Unheard Tapes takes the story from 1982 to 1986. The absence of government is stark. This is not done for effect; it is all too reflective of that time. It took half a decade before the government got involved. In half that time, a government of the same political persuasion facing Covid found a vaccine and administered it for every citizen – not two, but three times. 

It is no exaggeration to say Margaret Thatcher’s government was missing in action. The consequences were – and are to this day – huge. A generation of gay men missing or traumatised. Many people died in their prime. Homophobia, transphobia and racism acted as a super-spreader and starved funding and research. The country was deprived of great performers, scientists, teachers, doctors, nurses and more. Imagine what they could have achieved had their potential been realised.

The marginalisation of HIV and sexual transmitted infections (STIs) has led to preventative and testing services being poorly funded. The stigma attached to people with the virus too-often face prejudice and discrimination. Polling released by Terrence Higgins Trust this week finds only 37 per cent of those in the UK would kiss someone living with HIV – even less would go on a first date. People living with HIV are twice as likely than the general public to be in poverty and three times more like to experience poor mental health. 

This week the second episode aired on BBC2 and finally Norman Fowler steps up. His public advertisement campaign saved lives – that is in no doubt. They encouraged thousands to call LGBT Switchboard and the Terrence Higgins Trust helpline too – so much so the Kings Cross phone exchange overheated. But, they also left a long shadow of stigma.

The same polling for Terrence Higgins Trust reveals 48 per cent of the British public still remembers those tombstone/iceberg adverts, rising to 76 per cent in 45–55-year-olds. These ads still inform their understanding of HIV, but HIV has changed so much. They maintain the stigma in the minds of many. As Ian Green, chief executive of the Terrence Higgins Trust, said on the Pride in London stage on Saturday, “every one of us must pledge ourselves to allies against HIV stigma”.

This government is involved in the HIV response in unrecognisable ways these days. Thank God. They have a plan to end new HIV transmissions by 2030. They did listen to Terrence Higgins Trust on ending the ban on people living with HIV serving in the military and the scientific community on blood donation rules. 

However, it could still be better. There was a massive 20 per cent jump in HIV patients being lost to the care of a HIV clinic in 2020, with Covid a significant factor in that. In the six months since the HIV Action Plan was published there been little progress and opt-out testing has only been funded in London, Brighton and small parts of Manchester, despite its own guidance saying that it should be custom and practice in another 30 cities where HIV prevalence is high. 

Rupert and I were very generously both awarded an OBE in the recent Queen’s birthday honours. I was keen to dedicate it to all those lost to the Aids epidemic. It is in their memory, and Terry’s, that no one – politicians, healthcare workers, nor HIV campaigners – can be found missing in action if we are to end new cases of HIV before this decade is out. 


Martyn Butler OBE is co-founder of Terrence Higgins Trust.

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