When Susan Cole received a positive HIV test result in 1999, her doctor delivered a devastating prognosis: she had just seven years left to live. More than a quarter of a century later, the now 57-year-old is not only living a full and healthy life but is a leading campaigner tackling the stigma and systemic barriers that still surround the virus.
From a shocking diagnosis to a life of advocacy
Aged 30 and newly married, Ms Cole was tested for HIV during a routine immigration process in the United States, never believing she was at risk. "It just didn't cross my mind for a moment that an HIV test would come back positive," she told The Independent. The doctor's bleak prediction left her reeling, but it also sparked a journey of self-education and empowerment.
"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 explained. That knowledge became her power. Isolated from family in the UK, she carefully confided in close friends and family, and eventually channelled her experience into activism.
She has spent the last two decades campaigning and founded the Phoenix Health Movement, a non-profit organisation dedicated to addressing the health inequalities disproportionately affecting Black women.
The critical gap in HIV prevention access
Ms Cole's story of resilience comes as campaigners highlight a significant shortfall in access to preventative medicine. While new HIV diagnoses in the UK fell by 4% between 2023 and 2024, around 24 per cent of people who are more likely to acquire HIV need better access to Pre-Exposure Prophylaxis (PrEP). This daily pill, which became routinely available on the NHS in England in 2020, stops HIV transmission during unprotected sex.
Experts warn that groups like heterosexual women are far less likely to be recognised as needing HIV prevention compared to gay and bisexual men. ViiV Healthcare, a specialist HIV company, states that the government's ambitious target to end new HIV transmissions by 2030 will not be met without tailored interventions for women and other underserved groups.
An injectable form of prevention, called Apretude (cabotegravir), is set to be made available on the NHS in England and Wales, offering a discreet alternative to daily pills. "There is so much stigma around HIV and people don't want to be seen taking tablets," Ms Cole noted, endorsing the potential of the injection to improve uptake.
Tackling stigma and systemic barriers in healthcare
Ms Cole's experience underscores deep-seated issues within the healthcare system. Before her diagnosis, she asked her GP for an HIV test ahead of her move to the US, only to be told, "Oh no dear, HIV doesn't affect ladies like you." This misconception, she argues, is part of a wider pattern of not being listened to.
"It's systemic racism in healthcare settings," she said. "Black women are more likely to die in childbirth, and often when we go to the doctors, we're not believed about our pain." She stresses that if women do not feel heard, they will not feel comfortable discussing HIV prevention.
She is also determined to shatter myths, including the false belief that women with HIV will inevitably pass it to their children. Ms Cole has four children, two born before her diagnosis and two after, all born free of HIV. Modern treatment means those with an undetectable viral load have a less than 0.1 per cent chance of passing on the virus and cannot transmit it to sexual partners.
"I think we need to look at the language around HIV," she concluded. "We need to shift the language to have a much more empowering, sex-positive conversation." A Department of Health and Social Care spokesperson said the government's £170 million HIV Action Plan is committed to ending new transmissions by 2030 by tackling stigma and improving access to testing and prevention for all communities.
