To help women with HIV, we need a women-specific approach

9th November 2017

By Monica Karpinski

XXL London is a place where bears go to encounter other bears. Bears — in a nod to their animal kingdom counterparts — is a name that refers to gay men who are hairier and of a bigger build. They represent an identity-based culture within the wider world of gay male culture, and XXL is a club specifically for them.

But at an earlier point in the evening, a bear in XXL might also encounter campaigners from a Do it London outreach session, who are educating and providing resources to the club’s clientele about HIV.

Do it London is a successful HIV prevention and awareness campaign that has drastically reduced the rate of HIV diagnoses in London. While programme lead Paul Steinberg explains that the campaign is not specifically targeted at men who have sex with men (MSM), it has accounted for a steep decline in HIV diagnoses primarily in that group.

This trend has been reflected in Sarah Mulindwa’s work at clinic 56 Dean Street, where she is is a specialist sexual health nurse. “We started PrEP last year, and within a year we’ve seen an 80% drop in gay men diagnoses,” she says. “But that number is actually rising in BAME groups, and specifically women. So there is obviously still quite a lot of work to do.”

PrEP — pre-exposure prophylaxis — is an exciting new trial of preventative HIV medicine that for gay men can be taken before they have sex; women need to take the drug daily. There have been challenges presenting the drug as “not just a gay thing,” explains Paul, especially when considering that the bulk of places in the trial have been reserved by clinicians for MSM. This is because men account for over half to two thirds of HIV diagnoses, he says.

Public Health England reports that from 2015-2016, there was an 18% decline in all HIV diagnoses in the UK, with gay men mostly affected by the drop. While women enjoyed an overall more consistent decline in diagnoses from 2007-2016 than gay men, the rate of decline in gay men from 2015-2016 was higher than for the entire period of 2007-2016.

Yet the effects of HIV — including stigma, isolation, and access to services — are disproportionate for women. Sexual health charity NAZ reports that there are 31,600 women living with HIV in the UK, and of this 80% of those accessing care are Black Asian and minority ethnic (BAME). Just over half of women are diagnosed late, which means that by the time they are able to access care, the virus has already caused considerable damage to their immune system.

Why has the success enjoyed by MSM not been replicated for these women?

“Social and cultural issues are probably the main reasons BAME women don’t tend to access services,” explains Sarah. “Things like poverty and domestic abuse are factors that contribute to why women are at a higher risk, because they are less likely to access services if there are problems at home.

“There could also be cultural reasons for feelings that there are certain things that as a woman, you shouldn’t do. So coming to a sexual health clinic would be a massive taboo.”

Community-specific taboos can cause certain groups to isolate themselves or be unaware of services available to them. “In a lot of communities, in particular Asian communities, doctors tend to be a family doctor. There are a lot of issues in these communities where their GP is a relative or known within their community, so there is a fear of going to see someone you know,” Sarah says.

For women who are immigrants, there is the additional fear that by accessing a sexual health clinic, their information will be accessed and they may be at risk of deportation.

Above all, Sarah adds, the access barriers to HIV services BAME women face are largely down to social inequalities tied to race.

Both Sarah and Paul agree that reaching these women requires a community-specific approach.

When trying to reach gay men, Sarah and her team physically go to places where they might be, especially for those who are less likely to access services. “We might go to gay saunas, and we know a lot of men that go there aren’t necessarily gay, but go there because they’re unlikely to run into anyone they know. There is a fear of coming to the clinic because they will see somebody they know, so we go to them.

“In women, I think we could do a similar sort of approach. Go to places where we could access minority groups and go to them, instead of waiting for them to come to us.”

Engaging with local groups and communities is essential for there to be a trickle-down effect from campaigns such as Do it London. “That’s what we can’t do at a whole London level,” says Paul. “Which is why we commission local services and charities to go into these communities, whether that’s faith or community groups. We have to rely on the local services.”

Representing at-risk groups in relation to HIV in large-scale campaigns can also present a tricky catch-22. On the one hand, it could work to add to the stigma that group experiences. “If you put a gay person in the ad then people think, ‘Oh, it’s a gay disease’. So we have tried to target Londoners,” says Paul.

However, a lack of representation in advertising could also work to further alienate already isolated communities, adds Sarah. “A lot of these communities tend to stay within themselves, so a lot of patients don’t even know where to go for clinic services. And part of that could be a lack of advertising on our part, from the NHS.”

It is impossible to deny that BAME women have received less effort, energy, and attention in HIV prevention and education campaigns. But there is brilliant work being done by individuals, charities, and programmes in the UK to reverse this trend.

NAZ’s annual black tie event, the nOSCARS, celebrates achievements and advances in work done to equalise sexual health outcomes of minority groups. Many of the nominees to make it to the 2017 shortlist championed a community-based approach, with an entire award category dedicated to recognising the profound impact faith leaders and congregations have in BAME groups.

The clear and defining thread in nominees’ work is working hard to really understand their community’s needs, wants, culture, and experiences, and tailoring their action specifically to them.

“The same work hasn’t gone into accessing these types of people, more than anything,” says Sarah. “At Dean Street we really are at the forefront of HIV in London and we focus mainly on gay man, only because gay men are more likely to be tested positive. There is a lot in place for gay men. For women in terms of sexual health it’s still not as great.”

The Femedic is proud to be working with NAZ, supporting the nOSCARS by producing educational content and raising awareness of BAME sexual health issues.

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Monica Karpinski

Founder & Editor, The Femedic

Monica is Director & Head of Content at Curated, and founded The Femedic as the first site of Curated’s publishing arm. Against a journalism background and after years of leading content projects in the healthcare space, it became clear that health information out there for women simply wasn’t good enough. No-one had bothered to look deeper into the ways women were searching for information, or consider the depth of what they actually needed to know. Instead of waiting for the perfect publication to approach her, she created The Femedic.

Monica has been nominated for The Guardian’s Rising Star Award 2015-2016, and hosted a healthcare event at Google HQ in early 2017.