Couple speak out against stigma of HIV, following report

Tom Hayes and Jimmy Isaacs

A couple has spoken about living with HIV in the wake of a survey which found over HALF of millennials would shun a friend if they learned they had the virus.

Tom Hayes, 34, and Jimmy Isaacs, 30, were diagnosed with HIV from previous relationships after their respective partners at the time cheated on them.

And Tom, the editor in chief of Beyond Positive, the lifestyle magazine for people living with HIV, said he still gets offensive messages through social media.

Tom Hayes and Jimmy Isaacs

His comments come in the wake of research which found as many as 22 per cent of people aged 24 to 34 would no longer be friends with someone with HIV – and a further 32 per cent would distance themselves.

And 40 per cent of those questioned thought people got HIV through irresponsible behaviour or a promiscuous sex life.

Tom, also known as UKPositiveLad, said: “People with HIV still face stigma on a daily basis. There’s still a lack of education and until I was diagnosed, I’d never heard of HIV.”

Roland Chesters, from disability development consultancy Luminate, commissioned a survey of over 2,000 people in the UK to gauge current perceptions around the disease.

The report also revealed this age group was also least worried about catching HIV – and campaigners fear a lack of awareness is putting young people at risk of infection.

Roland Chesters of Luminate

Roland, who had been given two weeks to live following a late diagnosis of HIV in 2006, said: “I am both shocked and dismayed by the results – discrimination against people living with the condition should be a thing of the past.

“We have made huge strides with the diagnosis and treatment of HIV/AIDS since the 1980s and it’s time the public perception caught up.”

Undetectable and uninfectious

Tom and Jimmy Isaacs met through Twitter and regularly share their experiences on social media to tackle the stigma surrounding the condition.

Tom, who was diagnosed eight years ago, is a HIV activist and advocate, is working to reduce the number of new diagnoses and improve life for those living with the virus.

Early diagnosis and treatment means people living with HIV can expect to live as long as the general population – as well as reducing the risk of passing it on.

Tom, who is also an ambassador for the charity Saving Lives, said life goes on with HIV. He said: “I’m happy, I’m undetectable and uninfectious.”


But the government’s annual report on the disease has found nearly half of those diagnosed in the UK are at the late stage of infection. This may be linked to the associated stigma.

Roland said: “Most people aren’t as judgemental of other illnesses, such as cancer or diabetes, even if a person’s lifestyle was a contributing factor.”

Jimmy added: “I had been living in ignorance of HIV until a friend was diagnosed. Some of his friends vanished overnight when they found out he had HIV because they thought it was somehow his fault. This seems to be commonplace.

“A lot of people are scared to disclose their status because they fear being cut off from friends.

“When I learned I had HIV I was told ‘once you tell someone, you can’t un-tell them’. But I knew almost immediately that I wanted something good to come from it and to dispel the stigma.”

Tombstone adverts

The Luminate report found nearly 60 per cent of the millennial respondents said they were not personally worried about catching HIV – whereas the majority of people over the age of 45 were still concerned about the risks.

But almost three-quarters of gay men who were newly diagnosed in 2017 were aged between 25 and 49 years. This has remained the same for the past 10 years.

Roland puts it down to the fear instilled in the older generations with the 1980s “tombstone” public health campaign, which showed HIV/AIDS as a death sentence.

Roland, who previously chaired the disabled staff network at the Foreign and Commonwealth Office, said: “Millennials were not exposed to the stark ‘life or death’ adverts, which started to raise awareness of HIV and educate us about how it could be contracted.

“There are too many young people who don’t fully understand the situation. We need to bridge the gap between assumptions and reality.”


Roland is urging schools to include information about HIV as part of their sex education.

Jimmy, who shares his story in the book, Ripples- From the Edge of Life about the impact of HIV on people’s lives, said: “When I was growing up, we weren’t taught about the risks of catching HIV.

“The last national campaign was around 30 years ago and there has been no public information follow-up since then.

“I’ve basically educated myself but wish I’d have known about it earlier. I think it should be on the curriculum at school as ignorance kills.”

Jimmy is encouraging people to get tested regularly as early diagnosis improves the odds of living a long and healthy life and stopping the infection being passed on.


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Angela Belassie runs PR The Write Way to help small to medium sized organisations get coverage and raise their profile.