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UK women with HIV report: action needed


HIV, women in the UK, report, Public Health England, Sophia Forum, Terence Higgins Trust, testing, older women, poverty, stigma,We need to design evidence-based interventions and services to prevent inequalities in the care of women with HIV.

In the UK 1 in 3 people living with HIV are women, and women make up one quarter of all new HIV diagnoses.

A third of women living with diagnosed infection are aged 50 years and over – and some have complex health needs.

And the HIV services that exist are rarely designed with women in mind, or include and consult with women, in all their diversity, on their priorities and needs – so women are often expected to use services designed and dominated by groups that they are unable to relate to.

Women living with and affected by HIV are not a homogenous group and to treat them as such results in services that do not fit their needs and, worse, do not reach those for whom the safety net already has massive holes.

And a decade of government disinvestment has meant many of women in the UK with HIV have lost their HIV support services and local authority support for housing, and their women-only spaces, advice centres, counselling and mental health services, disability support, their domestic violence support services… That list goes on.

In early 2017, the Sophia Forum partnered with the Terrence Higgins Trust to carry out the first ever UK-based national HIV study focusing exclusively on the experiences and opinions of women living with or vulnerable to acquiring HIV. The resulting report, Invisible No Longer, was the first of its kind, co-produced with women living with HIV.

Public Health England has now addressed two key recommendations in the Invisible No Longer report. Firstly, by publishing women-specific data in the annual HIV data tables, and now for producing this thorough and detailed epidemiological report ‘Women and HIV in the United Kingdom: Data to end of December 2017’.

HIV transmission is continuing in the UK.

In 2017, 57 per cent of all women newly diagnosed probably acquired HIV in the UK. Among women born abroad and diagnosed with HIV in 2017, 42 per cent probably acquired HIV after arrival in the UK.

In 2017, women made up one-third (31 per cent, or 28,669 of the 93,385) of people living with diagnosed HIV infection and a quarter (1,106/4,334) of new HIV diagnoses.

In 2018, 29,712 women seen for HIV care in the UK.

The report considers that women are defined as adults aged 15 years and over who self-identify as female, so muddles its own figures, but nonetheless:

Among women in 2018: there were 1,185 new HIV diagnoses, 57 AIDS at diagnosis and 131 deaths. HIV is human immunodeficiency viruses, AIDS: acquired immune deficiency syndrome.

Among women newly diagnosed in 2018:

2 per cent (21) were aged below 15, 10 per cent (115) were aged 15-24, 27 per cent (322) were aged 25-34, 39 per cent (466) were aged 35 to 49, 18 per cent (215) were aged 50-64 and 4 per cent (46) were aged 65 and over;

93 per cent (826) acquired HIV through heterosexual contact, 2 per cent (19) through injecting drug use, 4 per cent (32) through vertical transmission and 1 per cent (13) through other transmission routes;

31 per cent (297) were white, 48 per cent (466) were black African, 4 per cent (37) were black Caribbean, 4 per cent (36) were black other, 4 per cent (43) were Asian and 9 per cent (92) were other/mixed;

25 per cent (242) were born in the UK, 14 per cent (137) were born elsewhere in Europe, 51 per cent (492) were born in Africa, 5 per cent (44) were born in Asia, and 4 per cent (42) were born elsewhere;

29 per cent (347) lived in London, 63 per cent (745) lived elsewhere in England, 2 per cent (23) lived in Wales, 2 per cent (21) lived in Northern Ireland and 4 per cent (43) lived in Scotland; and

47 per cent (398 out of 846) were diagnosed at a late stage of HIV infection. Late HIV diagnosis is an HIV diagnosis made with a CD4 cell count  greater than 350 cells/mm within 91 days of diagnosis.

The report means we now have more information than before on how the HIV epidemic impacts women in the UK.

The key findings, including that women receive fewer HIV tests, and that women with HIV are still very like to be diagnosed late and experience a worrying level of poverty, stigma and unmet health and social needs, must now be taken forward and used in work with women living with HIV to design evidence-based interventions and services to prevent inequalities in their care.

Action is also needed on other issues this report highlights, including the fact that that young women are not currently meeting the UNAIDS 2020 targets in terms of either diagnosis or viral suppression. This is unacceptable given the aim of meeting the 2030 target of zero HIV transmissions or preventable deaths.

To read the full report, click here.

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