‘I was told I had seven years to live after being diagnosed with HIV - 25 years later I am thriving’

“It just didn’t cross my mind for a moment that an HIV test would come back positive,” she told The Independent.

Still reeling from the diagnosis, her doctor went on to deliver Ms Cole another round of devastating news - that she only had seven years left to live.

“He knew very little about HIV and said ‘the good news is you don't have syphilis’, and then ‘the bad news is you're HIV positive’.”

Now, more than 25 years on, Ms Cole has defied the doctor’s prediction. She has spent the last two decades campaigning for people with HIV and has also set up a non-for-profit organisation that addresses health inequalities affecting Black women.

Isolated from her family in the UK, Ms Cole was careful about who she told and only went to her closest friends and family for support. But the one thing that helped her process her HIV diagnosis was research.

“My way of coping with my diagnosis was to find out everything I could about HIV, and I soon realised the doctor was wrong and that I could live as long as anyone else,” she said. “I think knowledge has been the most empowering thing for me.”

According to the NHS, HIV is spread through infected bodily fluids entering someone’s bloodstream, such as through birth, sex or sharing needles. Soon after infection there may be no symptoms, but if left untreated, it damages the immune system and may eventually cause more serious illnesses, such as tuberculosis, pneumonia or cancer. This is known as AIDS.

There is currently no cure for HIV, but there are antiretroviral treatments in the form of tablets taken every day, which can bring the virus down to an undetectable level in the blood. This means the infection can no longer be passed on and the person can live a long and healthy life.

Ms Cole, who runs the Phoenix Health Movement, asked her GP for an HIV test before she moved to the US.

“Not that I felt I was at any particular risk, but I heard there were tests. But the doctor said, ‘Oh no dear, HIV doesn’t affect ladies like you.’ I think often people, including healthcare professionals, have an idea that HIV isn’t something that affects them,” she said.

The government aims to end HIV transmissions by 2030 through increased testing, improving awareness of prevention and addressing the stigma that many people living with the virus continue to face.

The latest HIV surveillance data for 2024 shows new diagnoses are falling by 4 per cent across the UK, from 3,169 in 2023 to 3,043 in 2024.

Pre-exposure prophylaxis (PrEP), a daily antiretroviral medicine taken by HIV-negative people which stops its transmission during unprotected sex, became routinely available on the NHS in England in 2020.

But around 24 per cent of people who are more likely to acquire HIV need better access to PrEP. This includes heterosexual women, who are less likely to be recognised as people who require HIV prevention compared with gay and bisexual men.

An injection, called Apretude (cabotegravir), is also set to be made available on the NHS in England and Wales – offering an alternative to daily pills.

“There is so much stigma around HIV and people don’t want to be seen taking tablets. So having an injection might be expensive, but ultimately it's saving the NHS money because fewer people are getting HIV,” said Ms Cole, who now lives in London.

“Very often lots of women don't feel comfortable going into sexual health clinics, for instance, but if we had this widely available from pharmacists and the GPs, that would just make it so much better.”

ViiV Healthcare, the global specialist HIV company, warned the government’s target to eliminate new HIV transmissions by 2030 will not be met without tailored interventions that reach women and other underserved groups.

The company launched its “Risk to Reasons” initiative to empower both women and healthcare professionals to have open and honest conversations about HIV prevention options without fear.

“It’s systemic racism in healthcare settings. Black women are more likely to die in childbirth, and often when we go to the doctors, we're not believed about our pain. We need to tackle these issues because if women don't feel that they're being listened to, they're not going to feel comfortable about having conversations about HIV,” Ms Cole said.

There are many stereotypes and myths surrounding women and HIV, Ms Cole warned. One myth is that women with HIV will pass HIV on to their children, but Ms Cole explains this is not true, and she has four children – two before her diagnosis and two after – who were born free of HIV. Those on treatment with an undetectable load have a 0.1 per cent chance of passing on the virus.

She added people on effective treatment can’t pass HIV on to sexual partners and can live as long as anyone else. Some 25 years later, Ms Cole is thriving.

“I think we need to look at the language around HIV because there can be a focus on talking about risks which can increase the stigma. We need to shift the language to have a much more empowering sex positive conversation,” she said.

A Department of Health and Social Care spokesperson said: "HIV treatment has been transformed. Today, people living with HIV can enjoy full, healthy lives - and can't pass the virus on to others, which is remarkable progress.

"Ending new HIV transmissions by 2030 is ambitious - but this government is determined to make it happen through our new HIV Action Plan.

"The plan is backed by £170 million and sets out how we will address stigma, improve access to testing and prevention, and ensure services reach all communities who need them. It will also fund formula milk and sterilising equipment to reduce mother-to-baby transmission.”