Despite some progress, the voices of women with HIV are still not being heard, says activist Philip Baldwin


World AIDS Day falls annually on 1 December. But it is only recently that women have been included in the debate around HIV in the UK. For a long time gay, bi, pan and trans women living with HIV were completely erased. 

Partly due to progressive news outlets such as DIVA, the situation in the UK is moving on. With intersectionality increasingly championed, a few clinicians, academics and most activists are acknowledging that women living with HIV are not all heterosexual. 

Some of the most marginalised queer women in the LGBTQ community are those living with HIV. In July, I wrote a piece for DIVA which discussed a number of studies; for example, that carried out by Positively UK in 2015 which found that 23% of women living with HIV identified as bi.

Author and activist Philip Baldwin at Pride In London 2019

I am pleased to say that at the end of October 2019, Public Health England released its first report specifically focusing on women and HIV. Having a stand-alone report looking at this topic is a big step forward and there is really useful data in there surrounding the ethnicity and age of women living with and testing for HIV.  

Unfortunately, the report has significant gaps when it comes to LGBTQI women. A problem, which the authors of the report acknowledge, is that: “labelling women who acquired HIV via heterosexual sex as ‘heterosexual women’ oversimplifies female sexuality and alienates women who do not identify as heterosexual”.

The report contains headings referencing women from the LGBTQI community, at least acknowledging their existence, but data for bi and straight women continues to be grouped together. 

The most glaring example of LGBTQI erasure was the the brief section on trans women testing for HIV. Of the 578,881 women who took an HIV test in 2017 in England, the report found that only seven of these women were trans. 

I know more than seven trans women myself who took an HIV test in 2017, so it is a huge understatement when the report notes that these statistics are “likely to be an underestimate”. 

Despite the introduction of a new data sampling code for trans women in 2017, again admittedly a step forward, clinicians are still grouping trans women with gay and bi men for the purposes of data collection. This potentially has a devastating impact for the provision of services. Without accurate data, it makes it far harder to meet the needs of trans women.

This lack of data is reflected across Europe. At this year’s Autumn BIVA conference, I was fascinated to learn that the proportion of women impacted by HIV differs dramatically across Europe.

In France, approximately 39% of people living with HIV are women, in the the UK this figure is 29%, Portugal and Italy follow at 27%, Austria, Denmark and Switzerland are lower at 25%, while Spain and Germany have the lowest at 20%. 

These variations may reflect patterns of migration, access to HIV services or the way in which public health campaigns are targeted. I asked one of the European clinicians presenting on HIV about gay, bi, pan and trans women living with HIV. She said that, as far as she was aware, little or no work had been done on this in her country.

With a few exceptions, the voices of queer women living with HIV are still simply not being heard. Trans women, in particular, cannot continue to be marginalised by healthcare professionals in the discussion around HIV. I want to reiterate that World AIDS Day is important for the entire LGBTQ community (including women). 

World AIDS Day takes place 1 December. Find out more at

Philip Baldwin is a LGBT, HIV and Hep C Awareness Activist. For more information and to follow his journey head to or

Photo by Chelsi Peter from Pexels.

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