The UK government recently held a Call for Evidence to inform the new Women’s Health Strategy and Sophia Forum committed to ensuring that the voices of women living with HIV were heard.
We worked with National AIDS Trust to survey women living with HIV to inform our response. The survey went live in May 2021 and was shared via social media and through contacting the wider HIV sector in the UK. We received 96 responses, which provided insights into access to healthcare, education and information, and the impact of COVID-19, among other topics.
The majority of survey respondents identified as women (both cis and trans women), while 5% were non-binary/gender queer, 1% intersex and 7% something else. Half of respondents were from a Black, Asian and Minority Ethnic (BAME) background, with 43% identifying as white British.
The responses highlighted a variety of areas which could be improved in the new Women’s Health Strategy. For example, 30% of respondents said that they had avoided accessing healthcare due to their HIV status and 27% believed that opportunities were missed for them to test for HIV.
Many respondents also described problems with fragmentation of services and a lack of specialist support for potentially vulnerable groups including transwomen, mothers and women ageing with HIV. Care for those experiencing mental health problems and gender-based violence was also reported to be inaccessible. 41% of those who had been diagnosed with a mental health condition and 16% of those who reported experiencing domestic abuse in the last year had been unable to get specialist care.
A dearth of women-focused messaging was recognised as an issue too, with respondents wanting more information about an array of women-specific topics, written directly for them. For example, 59% of respondents wanted more information about ageing with HIV and 47% wanted more information about HIV and the menopause.
We used the experiences and views that were shared in our survey to inform a set of clear recommendations for the new government strategy. These align with the advocacy asks in our on-going We are still here campaign and focus on:
- raising the visibility of women,
- developing a holistic approach to HIV care across the life course and
- improving coordination within the health system.
Our full report, which explains the survey and gives detailed recommendations is available here.
The UK government want the Women’s Health Strategy to be an ambitious and positive new agenda on women’s health, with women’s voices at the centre. To achieve this, it is vital that experiences of women living with HIV are placed at the forefront.