Why Are Women Still Being Left Behind In The Fight Against HIV?

Across five London GUM clinics there has been a recent, startling drop of around 40% in the number of new cases of HIV infection; this has been described as remarkable, with Public Health England rightly stating that this is the first major downturn in the HIV epidemic among gay men in England.

And it is remarkable – it has taken around 30 years but finally, we have an effective method of reducing the numbers of people contracting HIV. The multi-pronged approach works; frequent testing, good adherence to medication, being undetectable, PEP and PrEP.

The only jarring thing about this drop is that, principally, it is being seen in young (25 to 34-year-old), white, gay men. Not jarring because young, white, gay men shouldn't get all the support that they are, and that they need – we know from all the data available that HIV has disproportionately impacted the gay community more than any other in this country – but jarring because rates of infection have remained static in all other groups, including women and heterosexual men.

On many levels it feels sacrilegious not to focus simply on celebrating the lives being saved. I do celebrate those saved lives, but the success doesn't feel connected to the intersectional space in which I, and many others, exist. I took my risks in many different spaces, including casual sex and the foolish innocence of love. Twenty-five years on I understand my risk-taking and feel confident enough not to be ashamed of it or shamed by it.

We live in a society that is structurally and systemically sexist and racist, so young white men are without doubt at the front of every queue that exists, be that in FTSE companies, wages, political structures...the list goes on. Thus reading that young white men have been the first to benefit from our improved HIV strategy won't surprise anyone. Privilege works by birth so it isn't anything that this group of young white men are actively doing, and it's really tough to highlight because there is no privilege that comes with an HIV diagnosis. Young, white, gay men are certainly not to blame – I doubt anyone is – but we cannot ignore the lack of improvement in the rates of women being diagnosed with HIV.

Why and how are women being so ignored in this fight? Look at the number of places reserved for all others (including women) on the PrEP Impact Trial: 2,000 out of 10,000. If 25% of all new HIV infections last year were women, why would there not be 2,500 places reserved on the trial specifically for women? Why has there been very little promotion of the PrEP trial among women, to increase identification of PrEP as a really effective way of preventing HIV transmission? Women, we are starting to find, have seldom even heard of PrEP; they have no concept that it exists.

I recently gave a talk at Oxford University's Wadham College around risk and historically marginalised groups, and we started to talk about prevention and then PrEP. I asked the room for a show of hands as to who knew about PrEP – the only hands that went up were those of the gay men present. It's great that they knew, but no woman put her hand up and when questioned, not a single woman had heard about PrEP, or PEP. Only sexism can explain why women who say they know they take risks – which is their right – do not know that there is a simple way to protect themselves from HIV.

Why does the notion still swirl around that women don't take risks when it comes to sex and love? Love, the space in which we all throw caution to the wind and say yes, I trust you.

Why do we still act as if this 'risk space' only houses men, specifically young gay men? How dare we still label gay men as inherent risk-takers and label women as only victims of sex if they test positive for HIV?

I asked Dr. Shema Tariq why she felt the numbers of women still contracting HIV had remained almost static for years.

"Poor research and an assumption that women don't know about their risks or how to protect themselves, sexism and misogyny still drives so much of what we do. Women have seldom been the principal targets of prevention campaigns. Women have really only been focused on in relation to HIV through pregnancy and then they are not the focus, the wellbeing of the baby is. We understand how that happens but the mother is often placed outside of the equation with hardly any time to come to terms with their own diagnosis. Historically most women find out they are positive through pregnancy screening."

This is backed up when I have the opportunity to speak with a young British-born Muslim woman who is of Caribbean parentage, who told me in almost hushed tones that whenever people talk about 'at-risk groups' they talk only of Africans. She feels silenced by her absence from the debate. She has been isolated and often alone since being diagnosed through her pregnancy screening.

"They told me the baby was the only thing to worry about, they treated me terribly throughout my pregnancy, made me feel guilty and because I was British born made me feel that somehow I should have known better. I felt blamed and shamed and it's taken me years to build up my confidence around my HIV status."

Jacqui Stevenson, who is currently researching ageing women living with HIV, agreed with Shema that poor research is often the gateway to women being left out of new interventions, and the myths surrounding women as poor research subjects have become structural and systemic through the years and this has resulted in an invisibility. Stevenson is one of the co-leads on the Invisible No Longer study, which looks at the experiences of women living with and at risk of HIV, and seeks to provide qualitative information about the lives and experiences of these frequently ignored groups.

Stevenson feels that often women in the sexual care setting have to prove their risk and entitlement and that this is purely misogynistic and an outcome of the ludicrous notion that only men have pleasure and therefore deserve protection, and only 'at risk' women (sex workers are frequently mentioned here despite seemingly showing little interest in PrEP) need prevention.

Dr. Andy Williams and Dr. Rageshri Dhairyawan, both sexual health and HIV specialists based at the London Hospital, expressed real worries that some groups are already being left behind and that as the cuts really sink in, perhaps driven by the effectiveness of our new interventions (PrEP etc), these groups will get left further and further behind.

"I had a patient who was so scared to continue with HIV care because of the punitive immigration atmosphere that they stopped treatment; a few months later they died." Dr. Rageshri is visibly upset recounting this story.

I asked them both what it was like working in an environment where you know the 'hard to reach' are becoming more isolated.

"Sometimes,” said Andy, “young clinicians starting out on their careers come here and meet patients, often from the south Asian community with a completely different view of sex and risk, already in a catastrophic situation, and the young doctors after a short time cannot cope; finding easy success here is tough. We know we have many more community links to build through the mosques etc and we know while we are doing this, real lives are suffering. Women, often women who may not speak the language, are often most at risk."

I got the sense talking to them that although they absolutely celebrated the brilliant work being done in reducing the number of new HIV infections, those improvements felt a million miles away from the bleak corridors of the old London Hospital.

On this World AIDS Day, let's try and remember that women have and enjoy sex, which means they sometimes encounter risk. And, secondly, that not all transmission is through sex; some people – admittedly few, but some – are born with HIV. Let's think about their beautiful bravery this year: those living with HIV, those at risk of HIV, and those working in some of the toughest environments, right here in our big sprawling city.

Note: A few days after the Wadham talk I was contacted by the Women's SU lead to say how appalled they were at the lack of sexual health promotion directed at women, so they have decided to 'skill up' so that they can effectively campaign and lobby for inclusion in the story of PrEP.