Woman diagnosed with HIV at 22 urges public to get tested
As Keir Starmer undertakes a test for HIV Testing Week - the second part of our special report into the UK's pledge to end the transmission of new cases of HIV by 2030
“When I was diagnosed it wasn't like it is now. I was just preparing to die. I bought my coffin and was planning my funeral in my 20s. Back then, I was going to a support group and every week there was one person no longer there.”
Emma Cole was 22 when she received the HIV diagnosis that would change the course of her life forever. It was 1991 and the height of the AIDS epidemic. The virus had been spreading across the globe for well over a decade, taking the lives of the majority of those who were diagnosed and igniting fear among ‘at risk’ communities.
Emma was speaking as The Lead revealed the UK was unlikely to hit its government-set target to eradicate new transmissions of HIV by 2030 as new transmissions continue to increase according to the latest figures.
Her diagnosis came on September 11, just weeks before the news of Freddie Mercury’s death which would rock the showbiz world, bringing a new focus on the virus. It was at this very time the media committed a frenzied assault on his Kensington home in a bid to eke out the gory details of his deterioration.
For Emma, it was almost three months since she discovered her boyfriend Ian was HIV positive, a diagnosis that at the time signalled a long descent into serious illness marred with opportunistic infections and almost always death.
“I had met Ian at a concert and we started dating,” she said. “When it became clear that it was going to be physical, I said that we needed to use condoms. He was fine with it and I thought ‘I’ve hit the jackpot’, because not all men are comfortable with that.
“On one occasion the condom failed, it was at that point he told me he was HIV positive. He was a white, middle-class man from the posh part of London. HIV was something I never thought would come close to my life. I wouldn’t have ever considered that to be a risk to me.”
After receiving the news, Emma called an HIV helpline and was told that the virus could be transmitted through heterosexual sex, a fact not commonly accepted or understood among the wider population. The support worker advised Emma to test in three months. She made it 11 weeks.
Attending a same-day testing service in Central London, Emma’s blood was drawn and hours later she was given the diagnosis.
“I was never angry with him,” she said. “For me, it was never a deliberate act. The safe sex message at the time was to use condoms and we did. I have to be honest, had he shared (his status) with me beforehand, I would have run a mile down the street to get away from him.”
Emma and Ian remained together for another year. Around this time, the HIV would cross the brain barrier, leaving Ian with AIDS-related dementia from which he never recovered.
The diagnosis was earth shattering for Emma, who was consigned to navigate her way through a period of intense stigma, limited information and a lack of treatment. But it was also an opportunity to change the rhetoric.
In 1992, Emma began talking on behalf of activism group Positive Youth on a voluntary basis, eventually launching her own company Positive Voice in 2002, delivering HIV education to high schools.
In the 22 years since, Emma, now 55, has informed countless young people about HIV transmission, prevention and advancements in treatment and now attends between 80 to 100 schools a year to inform the next generation.
Her messages are clear. Despite the major advancements in treatment - the virus has not gone away. It does not discriminate and it can affect anyone regardless of background, socioeconomic status, sexuality, race or gender.
“People need to ask themselves, have they had unprotected sex with someone five or 10 years ago?” she said. “A lot of people don’t make that connection to HIV. It took me 12 years to get sick but I knew my status.
“A lot of people won’t necessarily remember that they might have slept with someone unprotected maybe five, ten years ago or maybe at university,” she said. “They may go on to meet someone and have a family and not be aware that they are positive.
“It could even have been a casual pick up. I used to be horrified by those 18 to 30 holidays, everyone’s out drinking and having sex and not really considering the consequences.
“Then there are those who are maybe divorced or widowed and starting their lives again. They don’t need to think about pregnancy and they don’t use condoms.
“Everyone should have at least one HIV test regardless of risk, then you can either make informed choices in the future or get the care and support you need.”
Emma was speaking out as Prime Minister Keir Starmer undertook a HIV test, alongside soul singer Beverley Knight, for HIV Testing Week.
The Terrence Higgins Trust say when a live HIV test was taken by Prince Harry in 2016 there was a 500 per cent increase in requesting for testing kits via its website.
What is HIV?
HIV is a virus which attacks the immune system, evading elimination by the body’s own defences and damaging its ability to fight off infections.
With early treatment, those diagnosed can live healthy lives, with life expectancy falling at around the same for those without HIV. But left to progress the virus will destroy CD4 cells, which are vital in maintaining immune function. Eventually, this results in AIDS-related illnesses.
Those on treatment now and who have achieved an undetectable viral load, where copies of the virus are very low in the blood, cannot transmit the disease to others. This is known as U=U or Undetectable equals Untransmittable.
In the UK, HIV is most commonly transmitted through vaginal or anal sex without a condom but it can also be spread by sharing needles or injecting equipment, vertically (mother to baby at birth), through breastfeeding and via contaminated blood products - although the latter has been eliminated in the UK since the screening of blood products began in 1985.
About the author: Rachel is an experienced journalist and editor who has worked for titles across the North West, and written on a freelance basis for several national titles. She is also a journalism lecturer at The University of Salford.
To start the year we ran a survey of readers asking which topics you wanted to see The Lead cover more of. Health came through very strongly within this. As well as this two-part deep-dive into the growing cases of HIV in the UK we’ll have more reporting in the coming months covering physical and mental health. You can support us in this by considering a paid subscription by tapping below.
We hope you enjoy the week ahead and we’ll be back in your inbox again on Thursday morning.
Ed, Zoe, Luke, Sophie, Natalie and The Lead team