Sophia Forum campaigns for women’s needs and experiences to be recognised and addressed in HIV policy. Recent data from the the UK Health Security Agency (UKHSA) looking at HIV testing, PrEP, new HIV diagnoses and care outcomes for people accessing HIV services, shows inequalities in testing, access to PrEP and new and late HIV diagnoses for women. This data is the latest evidence in a long history of inequalities for women in HIV. It underscores the need for action to addressed widening gaps in outcomes as we work towards the 2030 goal of eliminating new HIV transmissions in England.
In order to inform the development of a new HIV Action Plan for England, that will guide HIV policy through to 2030, Sophia Forum partnered with Gilead to undertake a review of the landscape of women and HIV in the UK, and to understand the priorities and experiences of women living with HIV and professionals providing HIV services. Based on interviews with six professionals and 15 women with lived experience of HIV and/or experience of HIV prevention, we identified the following themes:
- Women’s experiences, needs and priorities are not recognised or prioritised
- The role and impact of gender is not sufficiently integrated or addressed in the UK HIV response
- Women do not feel heard, and services are not designed around women’s needs
Using the findings of our discussions with professionals and women with lived experience, along with a literature review, we developed policy recommendations that seek to inform and influence the development of the next HIV Action Plan and the provision of evolving HIV services. Initial findings and draft recommendations were shared and discussed at an in-person workshop with a range of stakeholders including: women affected by HIV; community organisation representatives; NHS and local authority commissioners; clinical leads; public health experts and HIV policy professionals. The feedback received was used to adapt and refine the recommendations. The final recommendations were validated in an online workshop with the women living with HIV who had been interviewed to ensure they resonated with the experiences that they had shared.
The aim of the resulting report, ‘Systematically excluded and ignored: addressing inequalities for women in the HIV response’, is to secure urgent action to address the inequalities women experience in relation to HIV at every level, through adopting a gender transformative approach to support achieving gender equity in HIV prevention, testing, diagnosis, care and support, and promote gender parity in HIV research and data. To achieve this aim, the recommendations of our report centre around the following five objectives:
- Prioritise women in national and local HIV strategies and structures
- Address the systemic evidence and knowledge gaps around HIV and women
- Apply a gender transformative approach to eliminate the inequalities in access to HIV prevention and testing faced by women and address the intersecting inequalities driving late diagnosis
- Ensure that women living with HIV have access to comprehensive and appropriate HIV treatment, care and support services
- Increase knowledge and awareness of HIV among all women
Find out more about this project by reading the report below and check out the campaign website at https://www.womenandhiv.co.uk/