Why We Need To Talk About The Needs Of Women Living With HIV

Today, the 1st of December, is World AIDS Day – a dedicated date in the calendar when activists, media organisations and charities come together to raise awareness about HIV and AIDS. For HIV educators however, every day is World AIDS Day. With approximately 6,000 people diagnosed in the UK each year, spreading information about the virus is a job that applies all year round. There are some excellent groups taking responsibility for this – ACT UP, PositivelyUK and Terrence Higgins Trust, to name just a few. If you are diagnosed with HIV in the UK today, the good news is that the virus doesn’t have to be a death sentence. The NHS offers free medication, and providing you begin treatment before your CD4 count falls too low (in simple terms: before your immune system becomes too weak), you can expect to live as long as if you didn’t have HIV. The bad news is: There is a lack of safe sex education that would help to prevent the virus being passed on; sexual health services will suffer from government spending cuts; and people who are diagnosed with HIV still experience high levels of discrimination and social stigma. There are HIV preventing PrEP drugs that could stop high risk-groups contracting the virus, but they are not reaching those who need them because they are not available on the NHS. These problems become increasingly worrying when placed alongside statistics that suggest 1 in 20 gay men in Britain have HIV, with the figure rising to 1 in 10 in London and 1 in 8 in Brighton. Thankfully, conversations are being had about this in the public domain: This week,VICE are releasing a documentary about how chemsex enhances the risk of HIV transmission. What we arguably hear about less, are the issues specifically facing women living with HIV in Britain. “There are around 35,000 women living with HIV in the UK and yet no national strategy to specifically empower these women” says Mary, an HIV activist who currently lives in the UK. “There’s also a serious lack of recognition of the gender-dimensions of HIV at national level,” she adds.

Mary works with groups like Sophia Forum – the only UK charity to focus specifically on women and HIV – and she is also one of the organisers of WISE UP, who provide advocacy training for women living with HIV). She also works with Positively UK and is a part of ACT UP (see all the campaigns here including ACT UP women's self-determination), her work focusing on helping other women who are positive. “Social inequalities, poverty and low or no income affects women disproportionately, which also makes HIV affect women differently,” says Mary. She believes there needs to be provision of equal opportunities in HIV management services to provide equal rights, resources, opportunities and protection for men and women in the UK. Mary was diagnosed with HIV in 2012. She was in a relationship with one person, with whom she had unprotected sex, but she didn’t think she was at risk. It wasn’t until she started having symptoms, like extreme tiredness, that she went to the doctor. At first, there was a mix up with her results and she was told they were negative. “In my experience, regular testing is the only way you would know your HIV status," she says. It wasn’t until Mary fell ill with pneumonia about two to three years after her initial negative result, and was hospitalised, that a test came up as positive. “My CD4 [white blood cell] count was 42 at that point,” she recalls, “The average is usually between 500 – 1500.”

After her diagnosis, Mary says she suffered a period of disbelief. “I think for a while I just kind of blanked it. I thought I would be okay.... but once I was discharged I experienced hallucinations, anxiety, and I just wasn’t myself. My mental health was really suffering, and I later found out that when your CD4 count is so low you can have mental health issues. That’s on a biological level – but of course, it happens on an emotional level too." Mary elaborates: “You feel isolated, you stop doing, you stop living.” She sighs deeply over the phone. “People think they can’t go back to work, because they are afraid. It’s difficult to have relationships. I felt like I had lost my rights as a human being. You feel like you’re no longer worthy." Mary’s GP prescribed her anti-depressants to help cope with these feelings. She had counselling from a charity for a while, but after the sessions ended, she had a relapse, “I was put on the list for counselling again a few months ago and I still haven’t seen anyone,” she says. It’s this lack of institutional support that moved Mary to start attending peer support groups. While she did not feel that she could talk to her family about her HIV status (she is originally from West Africa, where she says HIV comes with the stigma of promiscuity), she did feel able to talk to other women who are positive.

“Women only peer support spaces are needed,” she says. “I find when women meet in their own space it’s easier to find the confidence to talk… and then when they go out into a wider group, they feel better speaking and making contributions.” Trouble is, these spaces are few and far between. “Women with HIV need a place to come together,” says Mary, “But who provides the funding?” She tells me that Sophia Forum could only afford to support 21 women with HIV on their advocacy training this year, despite their best efforts. That’s 21 out of about 35,000 women living with HIV in the UK. Part of the problem, says Mary, is that service providers don’t think women need the service. But they do. “Women have got carer roles… I’m trying to run a support group now and I’m finding that because women have got children to look after they cannot find the time to participate… they don’t show up, and because they don’t show up, we don’t know about them.”

Research suggests that, as a woman living with HIV, you are also more at risk of domestic violence and emotional abuse. Mary has had personal experience of this, recalling a relationship where a man tried to manipulate her to stay with him, because he said that "nobody else would have her." Gender-based violence is both a cause and consequence of HIV in the UK and beyond. “But do healthcare professionals know about or offer support around the links between the two?” asks Mary. “No.” We need to ask why, when there are more women living with HIV than men in the world, it so often seems like women are less of a priority. Women are present within an average of about 20% of clinical trials; they’re missing from the spaces in which decisions about healthcare are made, and they’re also absent from a lot of the discussions about HIV taking place in the mainstream media. We also need to ask why there's such a serious lack of awareness about HIV prevention among heterosexual female communities compared, for example, with homosexual male communities – with a rising number of gay (and straight) men accessing testing in the UK, and a falling number of women. “It’s a cycle of invisibility and a lack of information,” says Mary. “Women are left behind... and we’re not okay.” @MillyAbraham *Names have been changed Make a donation to HIV Aware here