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

Susan Cole, a young newlywed mother, was stunned when she was diagnosed with HIV.

Ms Cole, 30, was tested for the virus following a routine immigration test in the US in 1999 but never believed she was at risk.

“It never crossed my mind that I would test positive for HIV,” he said. Independent.

Still reeling from the diagnosis, her doctor delivered devastating news to Ms. Cole once again; His prediction was that he only had seven years left in his life.

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

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Now, more than 25 years later, Ms. Cole has defied the doctor’s prediction. She has spent the last two decades campaigning for people with HIV and also founded a nonprofit organization that addresses health disparities affecting Black women.

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

“The way I coped with my diagnosis was to learn everything I could about HIV, and I soon realized that the doctor was wrong and that I could live as long as anyone,” he said. “I think knowledge is the most empowering thing for me.”

According to NHSHIV is spread through infected body fluids entering someone’s bloodstream, such as through birth, sexual intercourse, or sharing needles. There may be no symptoms immediately after infection, but if left untreated it damages the immune system and can eventually cause more serious diseases 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 that can reduce the virus to an undetectable level in the blood. This means that the infection can no longer be transmitted to others 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 moving to the US.

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“It’s not that I felt I was at any particular risk, but I heard they were being tested. But the doctor said, ‘No dear, HIV doesn’t affect women like you.’ “I think most people, including health professionals, have the idea that HIV is not something that affects them,” he said.

The government aims to stop HIV transmission by 2030 by increasing testing, raising awareness of prevention and addressing the stigma faced by many people living with the virus.

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

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

But about 24 percent of people more likely to have HIV need better access to PrEP. This includes heterosexual women, who are less likely to be recognized as needing HIV prevention compared to gay and bisexual men.

An injection called Apretude (cabotegravir) is also planned to be made available on the NHS in England and Wales; This offers an alternative to daily pills.

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“There’s a lot of stigma around HIV and people don’t want to be seen taking tablets. So the injection can be expensive, but ultimately it saves the NHS money because fewer people get HIV,” said Ms Cole, who now lives in London.

“For example, many women are hesitant to go to sexual health clinics, but if we could make this widely available from pharmacists and GPs, that would be so much better.”

Global specialist HIV company ViiV Healthcare has warned that the government’s target of eliminating new HIV transmissions by 2030 cannot be met without specific interventions for women and other underserved groups.

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

“There is systemic racism in healthcare. Black women are more likely to die in childbirth, and often when we go to doctors our pain is not believed. We need to address these issues because women will not feel comfortable talking about HIV if they do not feel they are being listened to,” Ms. Cole said.

Ms Cole warned that there were many stereotypes and myths about women and HIV. One myth is that women with HIV will transmit HIV to their children, but Ms Cole explains that this is not true and that she has four children born without HIV (two before diagnosis, two after diagnosis). Those treated with an undetectable load have a 0.1 percent chance of transmitting the virus.

He added that people who receive effective treatment cannot pass HIV to their sexual partners and can live as long as anyone else. Nearly 25 years later, Ms. Cole is thriving.

“I think we need to look at the language around HIV because it can focus on talking about risks that can increase stigma. We need to change the language so we can 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 live full, healthy lives and not transmit the virus to others, which is a remarkable advance.

“Ending new HIV transmissions by 2030 is ambitious, but this government is committed to delivering this 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 that need them. It will also fund formula milk and sterilization equipment to reduce mother-to-baby transmission.”