HIV was in the news last month, as Public Health England published new data showing a steep decline in HIV diagnoses in gay men, down 21% in 2016, compared to 2015. This is a huge, significant achievement, and should be celebrated. But what the headlines didn't focus on is who is being left behind. 1226 women were diagnosed with HIV in 2016, 24% of all diagnoses. 47% of women were diagnosed late, which means greater risks to their health.
Looking beyond prevention and diagnosis, there are 31,600 women living with HIV in the UK, 31% of the total. Accessing the right support can be critical to living well with HIV.
Yet there is little focus on HIV prevention for women, and few services or sources of support for women living with HIV.
Often, when people think about HIV, they don't think about women. For women living with HIV, who often fear or experience stigma and discrimination, this can make it even more challenging to feel seen and heard.
Women's experiences, priorities, and needs around HIV prevention, care or support may be very different to those of men, but there is little research to tell us about this.
In my PhD research, looking at women's experiences of ageing with HIV, I have heard many women describe feeling invisible, as there is so little focus on women in HIV policy and programmes. One researcher I interviewed described this:
Conceptually I think it is partly to do with the fact that there is just so little out there in terms of our understanding, so I think women quite often aren't as represented in research, they aren't as represented in a lot of just considerations around HIV policy. There was definitely a sense in the women I spoke to, they felt that they were invisible, that nobody consulted them, that people didn't understand living with HIV from their point of view. So there was definitely a sense of them being like the forgotten people or the invisible people. (HIV social researcher)
It's time this changed.
Invisible no Longer is a joint project by Sophia Forum and THT, two national HIV charities who have come together to address the invisibility of women in HIV policy and programmes in the UK.
Today, we are launching two surveys, which will be critical in giving greater insight into women's priorities, experiences and preferences around HIV, and help to inform an advocacy and policy agenda to make positive change.
These surveys are for all women, regardless of immigration status, sexuality, gender identity or other factors, to share their experiences and priorities around HIV. Currently, we don't have the evidence, data or commitment needed to ensure that HIV prevention, testing, and services are open to and meet the needs of all women. Help us to change that.
One survey is for women living with HIV, and the other is for women who are concerned about getting HIV.
1. Invisible no longer: Experiences. This survey is for women living with HIV to share their views.
2. Invisible no longer: Prevention. This survey is for women who may be concerned about getting HIV to share their views on HIV prevention.
If you fall into either group, please take the survey that is right for you and make your views heard and your priorities visible.
Making women visible is vital to reducing HIV transmission, and to upholding the rights of women regardless of their HIV status. Support us by sharing these surveys, and taking part if you can, and be part of making the change happen.