Susan Cole discusses why its important for black women to take control of their sexual health
This World AIDS Day there’s a lot to celebrate for many in the UK. We’re now seeing a significant drop in new HIV infections, particularly in gay men in London. It’s finally acknowledged that people with HIV on effective treatment can’t pass the virus on and can expect to live as long as anyone else. There’s a new remarkable once a day pill that can prevent HIV. Time for ebullient complacency? Afraid not. Black women aren’t even close to white gay men in reaping the benefits of the latest advances.
Matthew Hodson, Chief Executive of Nam Aidsmap, the HIV information charity, highlighted the issue of HIV related inequality between different groups “This year has seen astonishing progress in our efforts to prevent new cases of HIV. However, our successes cannot be triumphs until no groups are left behind. Women, trans women and BAME communities are not benefitting at the same levels from recent advances. The new data is no cause for complacency, rather it’s proof that the tools we have can work. This is not a time for us to falter or hesitate in the fight against AIDS – this is the time for us to conquer it.”
Black women are dramatically more likely to be affected by HIV than white women. Nearly 80% of women accessing care in the UK are from black communities, yet are significantly more likely to be diagnosed late. A late diagnosis can have a harrowing impact on health and life expectancy, so it’s crucial HIV awareness and testing is improved. We are often lazily dismissed as “hard to reach” so it’s essential we seize control of our sexual health, ensuring we’re sufficiently knowledgeable and our voices are heard.
I spoke to Angelina Namiba, a trustee of the National AIDS Trust (NAT), who has been living with HIV for over twenty years. She emphasised the importance of HIV awareness and testing:
“It is critical to raise awareness of and to encourage women to understand the progress that has been made in addressing HIV globally. That HIV is now a manageable long-term condition. It is also important for women to have information about how easy it is to test. And that once tested, if HIV positive, they can access treatment, care and support. This will, in turn, enable them to continue leading healthy and meaningful lives: to continue working, to study, to have relationships and to start families, if that is what they wish.
A word of advice for a woman who tests HIV positive today is: you are not alone. There are many of us women living with HIV in the UK today. Please ensure that you engage with your healthcare providers and access peer support as soon as you are able to. Accessing peer support very early on in my own diagnosis saved my life.”
As emphasised by Angelina peer support is crucial to many women living with HIV, however, we are seeing unprecedented cuts to support services with many being completely decimated. Similarly, sexual health services are experiencing monumental funding cuts. Dr Rageshri Dhairyawan, Consultant in Sexual Health and HIV, Barts Health NHS Trust, wrote about the impact of sexual health cuts on black communities showing that yet again we will be disproportionately affected, with inevitably worsening sexual health.
The vast majority of Dr Dhairyawan’s female HIV patients come from black communities. I asked her about her concerns for women living with HIV. Insufficient involvement in clinical trials was a big problem: “One of the main clinical issues affecting women living with HIV is their under-representation in drug trials. A recent review of 387 antiretroviral studies since 1994 showed that only 23% of participants were women. As there can be gender differences in how drugs are absorbed and metabolised, important differences in efficacy, side-effects and toxicities may be missed. Researchers need to plan recruitment in ways that encourage women to take part and provide support such as transport costs and childcare.”
The unprecedented recent drop in new HIV infections in gay men in London can be attributed to a number of factors. Increased HIV testing and when testing positive starting HIV treatment straight away have had a significant impact. Effective HIV treatment reduces the level of the virus in the blood to undetectable levels so it can’t be passed on – it’s people who are unaware of their HIV status who are much more likely to transmit it. Another factor was that a significant number of gay men had been accessing PrEP (pre-exposure prophylaxis), the once a day pill that can prevent catching HIV. PrEP isn’t yet fully available on the NHS in England, but it is available to some most at risk of catching HIV as part of a trial. This includes many black women, however, efforts to let us know are shamefully inadequate.
I spoke to Memory Sachikonye, Co-chair of the Sophia Forum, the Women’s HIV charity, about the need for black women to find out about PrEP. She emphasised that places on the PrEP Impact trial in England for people at high risk of HIV are filling up quickly, so black women at risk need to act fast – the link to the trial includes information on how you can take part.
Memory has been living with HIV since 2002. Like Angelina she highlights the importance of peer support and the fact that HIV is not a barrier to living a full and fabulous life:
“The day of my diagnosis was the first day of my new life. After the shock and accessing peer support services, I look back from that day and realise I made the best decision: Live, love and be happy.”
During the run-up to World AIDS Day, as we see a handful of celebs wearing red ribbons, it’s possible HIV may flitter into our consciousness. As black women, we cannot afford to be complacent about HIV throughout the year. Know your HIV status. Know the facts about HIV. Knowledge is empowering and ultimately can keep us alive.
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