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HIV and the invisible women in the UK


Sophia Forum, Terrence Higgins Trust, HIV, women in UK with HIV, research, report, Women are not seen as a “key target” for HIV interventions.

Around a third of the around 90,000 people living with HIV in the UK are women, and a quarter of all new HIV diagnoses are in women, yet women living with and affected by HIV have been mainly invisible in the narrative and response to HIV in the UK.

We know little about what it means to be a woman in the UK living with or at risk of HIV and we do not know enough about what women’s needs are or what interventions are in place to meet these needs.

But the Terrence Higgins Trust has now launched a new report with the Sophia Forum that shines a spotlight on the needs of women affected by HIV.

The Terrence Higgins Trust fights against HIV and to improve the nation’s sexual health, while the Sophia Forum promotes and advocates for the rights, health, welfare and dignity of women living with HIV through research, raising awareness and influencing policy.

‘Women and HIV: Invisible No Longer’ was a one-year project led by the two charities.

It aims to set out clear recommendations for policy and service development to ensure that greater focus is given to women affected by HIV.

The project was co-produced with women living with and affected by HIV, and used existing evidence and generated new data with over 340 women involved in the project’s surveys and workshops and aimed to provide a comprehensive overview of the situation for women in the UK living with or vulnerable to acquiring HIV.

It focused on all women; women of any sexuality, any ethnicity, whether they have or do not have children or are pregnant, and included trans women.

The full report details a range of recommendations for action.

Its key findings were that:

Women make up one third of people living with HIV in the UK, yet are left out of research, decision-making and service design and delivery;

Women’s experiences of living with HIV, and the impact it has on their lives, vary widely. Almost half (45 per cent) of women living with HIV in the UK live below the poverty line;

Over half of women living with HIV in the UK have experienced violence because of their HIV status;

Nearly one third (31 per cent) have avoided or delayed attending healthcare in the past year due to fear of discrimination;

Two thirds (67 per cent) are not satisfied with their sex lives;

Two in five (42 per cent) said that HIV impacted their decisions on whether to have children;

Despite this, half of women living with HIV (49 per cent) described their quality of life as ‘good’ or ‘very good’, while a further 38 per cent called it ‘acceptable’; and

On HIV prevention, little effort has been made to define who women at risk of HIV are. Nearly half the respondents (42 per cent) felt that barriers prevent them from testing for HIV, and no woman the researchers spoke to had yet chosen to access PrEP.

And its five key asks summarise the changes the charities need and want to see to ensure that women are Invisible No Longer in HIV prevention, care, support, research and data in the UK.

1 – Achieve gender parity in the UK HIV response, ensuring equitable investment, priority and attention to women in HIV prevention, research, data and services.

2 – Ensure that HIV research addresses specific knowledge gaps around HIV and women and supports the full participation and meaningful involvement of women.

3 – Prioritise reducing late diagnosis of HIV among women, better explore the use of innovative HIV testing approaches, and improve rates of HIV test offers and uptake in different settings.

4 – Improve data collection and disaggregation on HIV and women, ensure local level data is available, and include sexuality data for women in national reporting.

5 – Invest in HIV support services that meet women’s needs holistically and enable women to not just live well but to thrive, including peer support and support for mental health and gender-based violence.

Women are not seen as a “key target” for HIV interventions.

This must change.

Will you pledge to make sure women are Invisible No Longer when it comes to HIV?

Please join the call for a far greater focus on women living with and affected by HIV on Twitter, Facebook and Instagram by sharing the #InvisibleNoLonger pledge – and pledge to make sure women are #InvisibleNoLonger when it comes to HIV.

To read the full report, click here.

And please write to your MP to draw their attention to this; and to Jeremy Hunt MP, Secretary of State for Health and Social Care, to ask him to read the report and sign the pledge.

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