BBCLeasuwanna Griffith says she was destined to be a “menace to society” before she was diagnosed with HIV while she was pregnant in 2003.
“Getting HIV calmed me down. It made me more aware of other people and their feelings. It humbled me in a good way,” says the east Londoner.
Despite her positive outlook, she says life was tough at the beginning because there was little support for her as a black woman.
“The options were for gay men or African communities. There was nothing revolving around my culture as a Caribbean woman, so we just chugged along,” she says.
“At the time I was given an expiry date on my life, so I lived everyday like it was my last, and that’s not good, especially if you have children.”
She now works with the London-based charity Phoenix Health Movement that supports black women living with HIV.
Its co-founder Susan Cole is calling for more testing in places women traditionally visit, such as nail bars, cafes and libraries.
“We need to make sure testing is in places where woman go,” says Ms Cole.
She is concerned the messaging around HIV is not targeted enough and that progress is being “stalled” as a result.
In London there has been a 17% rise in the total number of new diagnoses of HIV between 2022 and 2021, according to the UK Health Security Agency (UKHSA).
The UKHSA found black Africans represented 20% of all newly diagnosed people in London in 2022.
There has been a rise in the number of black women being diagnosed.
Ms Cole says: “Services aren’t targeted for black women.
“Information is not targeted and lots of women don’t feel comfortable going to sexual health clinics.”
There is also other barriers to testing including stigma and discrimination, she says.
A report commissioned by the London HIV Prevention Programme (LHPP) found that despite progress in testing and awareness, black African, Caribbean, and other black heritage communities continue to face higher rates of new HIV diagnoses in the capital.
Marc Thompson, lead commissioner for LHPP, says “HIV hasn’t gone away”.
“A quarter of all new diagnoses last year were in women and we are seeing more and more late diagnoses in older people,” he says.
“We need to address HIV stigma, improve access and let those communities know there is something they can do to prevent HIV so we can start making an impact.”
The charity Spectra runs dozens of outreach clinics across London and says taking HIV services into communities is “vital”.
Its chief executive Joel Robinson says: “Being in a library, cafe or barbers shop, we hope builds trust and confidence in our outreach workers, because we are approaching people in places where they feel safe.”
Mr Robinson says HIV is on the rise among lots of different communities and people including heterosexual and older individuals.
“We do a lot of work with asylum seekers, refugees and people who don’t have English as a first language, so often they don’t know where to go which is why we go to them,” he adds.
Ms Griffith now helps others as the Caribbean community outreach leader with the Caribbean and African Health Network and says being diagnosed has been a “positive experience”.
She says she can understand why there is still a rise in new cases of HIV among black women, because many believe it does not affect them.
Since being diagnosed, Ms Griffith says she has lived a normal life, given birth to two babies who are negative and trained as a nurse.
Her message to others is that you can live “fabulously with HIV” and that knowing your status is important.