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World Aids Day: Why women's lives matter

PLEA: Marion Wadibia says that the black experience in the UK is partly to blame for an increase in women declining HIV tests

THIS WORLD AIDS Day, there will be a lot of discussion about disclosure and how important it is that those living with HIV feel safe, supported and secure in disclosing their status.

For the black community, the discrimination and stigma that people living with HIV face in the UK, and around the world, is as virulent and damaging as it was during the height of epidemic. People still think that one only gets HIV because they’ve done something naughty, to be ashamed of.

As with almost everything, black women have been erased from the dominant HIV narrative.

SERVICES

Cuts to government spending on sexual health services are leaving black women in the UK particularly vulnerable to HIV and other STIs. Black, Asian and minority ethnic (BAME) women already carry a significant burden of the sexual health inequalities affecting the BAME population, and this is largely due to entrenched structural and gender inequalities, as well as the cultural barriers that prevent our communities from seeking the help they may need.

Juliet Reid, below, CEO of Centre for All Families Positive Health (or CAFPH) a black African woman living with HIV, agrees that disclosure can be empowering for some, but says the reality for many others simply doesn’t allow it.

“I don’t agree with the business of pushing people to disclose. Everyone has complexities. You might not be in a position to be strong enough to continually challenge people when you tell them you’re HIV positive.

“People choose not disclose because it will have an impact on their partner or children or work or neighbourhood. Choosing not to disclose outside of those who need to know can be an act of protection.”

Reid’s goal at the helm of CAFPH and as a woman and mother, is to provide the skills, support and strength black women need to “make peace” with an HIV diagnosis.

“‘Make peace’ might not even be the right phrase. We should be helping people develop the skills to disclose, if they want to, and we need to support people to be strong and to be comfortable living with HIV.

"If someone is strong and comfortable living with their diagnosis, then they start developing the skills to challenge stigma and to say, ‘I’m living with HIV’.

“But we haven’t yet created an environment of support that gets the black community to a disclosure narrative.”

Indeed, there is a great deal of work to be done in encouraging black women in the UK to get an HIV test in the rst place because of stigma. Far from being a “gay disease”, it is estimated that, in 2014, one million women globally died from HIV-related illnesses.

In the UK in 2016, 79 per cent of all women accessing HIV care in the UK were BAME. On a global and local scale, black women bear the brunt of societal and systemic erasure.

Despite these outrageous numbers, messaging, prevention and care services are not being funded for black women at the rate of other communities at risk.

Perhaps this all work together to explain the 52 per cent increase in black women declining HIV tests when offered since 2012. Marion Wadibia, CEO of BAME sexual health charity NAZ, says the complexities of the black experience in the UK, coupled with entrenched gender disparities make it dif cult for black women to come for- ward to get tested.

“For many reasons, black women might feel they are not at risk. They may have in their heads that HIV is something gay people get or that if they do test positive, they won’t be supported.

“Everything we’re doing works to reverse these damag- ing perceptions of HIV. The fact of the matter is, we, as black women, are disproportionately affected by HIV in every objective sense.”

OPPRESSIONS

She continues: “From a lack of funding to the compounded intersectional oppressions that leave us vulnerable, it is important that we take charge of our sexual health and that we demand the support our lives deserve. It really does start with us.”

The biomedical strides made in HIV over the past 30 years are nothing short of remarkable. Over 30 years, HIV has moved from a terminal to chronic condition, much like diabetes.

If detected early enough, the medication for HIV is now so advanced that one can live a long, ful lling life and cannot pass the virus on. The road to living well with HIV, with or without disclosure, begins with regular testing.

Both Reid and Wadibia are also calling on the government to recognise that the intersectional experience of black women needs to be invested in. “We’ve reached a point where we are making a U-turn in support services,” says Reid, “and this has been detrimental for black women who face a lot of complex issues, including racism, misogyny, domestic violence and stigma.

“We’ve been underinvested in for a very long time and we know that HIV disproportionately affects black women. We need to lobby the government to invest in services for black women. Our lives matter.”

Josh Rivers is director of communications at sexual health charity NAZ.

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