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| Rachel is composed, confident – and unable to tell anyone she is HIV-positive | Rachel is composed, confident – and unable to tell anyone she is HIV-positive |
| (34 minutes later) | |
| Rachel* is 32. Born in Uganda, she has lived in the UK for more than a decade. She works in administration, is impeccably dressed and with a smile walks in to my clinic room. This seemingly composed, self-sufficient woman is HIV-positive. Nobody except Rachel, me and the rest of her medical team know. Since acquiring the virus from her former partner she has been unable to confide in a single person about one of the biggest things that has and will ever happen to her. | |
| Anthony* was 55 when I met him. Originally from Sierra Leone, he had two children and tested HIV positive at our walk-in sexual health clinic. He then failed to attend his follow-up appointment. I met him again six months later in A&E with a severe headache. He was diagnosed with a HIV-related brain tumour and died shortly after. | Anthony* was 55 when I met him. Originally from Sierra Leone, he had two children and tested HIV positive at our walk-in sexual health clinic. He then failed to attend his follow-up appointment. I met him again six months later in A&E with a severe headache. He was diagnosed with a HIV-related brain tumour and died shortly after. |
| I work as an HIV specialist in south-east London, an area with the highest prevalence of HIV in the UK, and the accounts above are from patients who demonstrate the ongoing misconceptions, stigma and fear that can accompany a HIV diagnosis in the black minority and ethnic (BME) community. | I work as an HIV specialist in south-east London, an area with the highest prevalence of HIV in the UK, and the accounts above are from patients who demonstrate the ongoing misconceptions, stigma and fear that can accompany a HIV diagnosis in the black minority and ethnic (BME) community. |
| Of the approximate 110,000 people diagnosed with HIV in the UK in 2013, an estimated 59,500 acquired their infection through heterosexual contact. Black Africans constituted two-thirds of this group and while progress is being made in increasing public HIV awareness and support for HIV-positive people, needs remain unmet for the BME community. | Of the approximate 110,000 people diagnosed with HIV in the UK in 2013, an estimated 59,500 acquired their infection through heterosexual contact. Black Africans constituted two-thirds of this group and while progress is being made in increasing public HIV awareness and support for HIV-positive people, needs remain unmet for the BME community. |
| In July 2014 the National Aids trust issued a report stating that insufficient resources are going into HIV prevention and testing in BME groups. Currently, an estimated 25,000 people are living in the UK with undiagnosed HIV, many from BME communities, who are unwittingly passing on the infection to others. They are also more likely to be diagnosed later, with already advanced HIV disease that requires intensive and expensive medical management for survival. | In July 2014 the National Aids trust issued a report stating that insufficient resources are going into HIV prevention and testing in BME groups. Currently, an estimated 25,000 people are living in the UK with undiagnosed HIV, many from BME communities, who are unwittingly passing on the infection to others. They are also more likely to be diagnosed later, with already advanced HIV disease that requires intensive and expensive medical management for survival. |
| The report also highlights the stigma felt by BME people which creates a huge barrier to engaging patients in HIV care. Significant numbers of BME patients report feeling discriminated against because of their ethnicity and HIV status, even within the health system, and endure social isolation. Of added concern is the growing number of gay men from BME communities, some of whom have fled their homes because of anti-gay legislation and ostricisation, with no emotional support or formal education about HIV risk. | The report also highlights the stigma felt by BME people which creates a huge barrier to engaging patients in HIV care. Significant numbers of BME patients report feeling discriminated against because of their ethnicity and HIV status, even within the health system, and endure social isolation. Of added concern is the growing number of gay men from BME communities, some of whom have fled their homes because of anti-gay legislation and ostricisation, with no emotional support or formal education about HIV risk. |
| Wider issues of immigration remain, with significant, uncalculated numbers of BME people living in the UK with uncertain residency status, unable to work or access a GP. Many live in poverty and isolation, factors intrinsically linked with HIV acquisition and reduced testing uptake. Initial accommodation centres and detention centres are also missing a trick by not offering HIV testing, a scheme which has already been shown to flag up compelling numbers of positive tests and prompt referral of HIV-positive people into appropriate care. | Wider issues of immigration remain, with significant, uncalculated numbers of BME people living in the UK with uncertain residency status, unable to work or access a GP. Many live in poverty and isolation, factors intrinsically linked with HIV acquisition and reduced testing uptake. Initial accommodation centres and detention centres are also missing a trick by not offering HIV testing, a scheme which has already been shown to flag up compelling numbers of positive tests and prompt referral of HIV-positive people into appropriate care. |
| The task is challenging. Budget cuts are moving money away from preventative strategies and sexual health education. The opt-out HIV testing scheme recommended in high-prevalence areas (where every patient registering with a GP or attending a hospital is tested unless they refuse) is not affordable for many hospital trusts, including my own. The staffing and time required to integrate BME groups in an appropriate and culturally acceptable way cannot currently be provided. | The task is challenging. Budget cuts are moving money away from preventative strategies and sexual health education. The opt-out HIV testing scheme recommended in high-prevalence areas (where every patient registering with a GP or attending a hospital is tested unless they refuse) is not affordable for many hospital trusts, including my own. The staffing and time required to integrate BME groups in an appropriate and culturally acceptable way cannot currently be provided. |
| Paul Clift is an HIV patient representative in our unit and has worked for decades to promote understanding around HIV. “I’m a person with HIV who is currently employed to offer peer support to people with HIV,” he says. “However, the person I’m supporting is often very different from me in various social and cultural ways. It can take many years to establish oneself as a trustworthy person in the different communities that we work with in London and for this reputation to be maintained”. | Paul Clift is an HIV patient representative in our unit and has worked for decades to promote understanding around HIV. “I’m a person with HIV who is currently employed to offer peer support to people with HIV,” he says. “However, the person I’m supporting is often very different from me in various social and cultural ways. It can take many years to establish oneself as a trustworthy person in the different communities that we work with in London and for this reputation to be maintained”. |
| One charity he works with is the African Advocacy Foundation (AAF) in south-east London. AAF aims to raise awareness of HIV, reduce stigma and provide support to people affected by the infection. Part of this involves working specifically with faith and religious groups, a sector where misconceptions and stigma around HIV remain problematic. A patient recently explained to me that he stopped taking his tablets as his pastor told him they were unnecessary, rendering the drugs useless and leaving him open to severe illness. | One charity he works with is the African Advocacy Foundation (AAF) in south-east London. AAF aims to raise awareness of HIV, reduce stigma and provide support to people affected by the infection. Part of this involves working specifically with faith and religious groups, a sector where misconceptions and stigma around HIV remain problematic. A patient recently explained to me that he stopped taking his tablets as his pastor told him they were unnecessary, rendering the drugs useless and leaving him open to severe illness. |
| Related: Black and minority ethnic people are shortchanged by mental health services | Related: Black and minority ethnic people are shortchanged by mental health services |
| The topic of HIV stigma requires further work, specifically within these less accessible groups. The challenge is huge and can seem insurmountable. But to limit HIV transmission, reduce preventable hospital admissions, improve patient support and overall outcomes, it is a topic that must be addressed. | The topic of HIV stigma requires further work, specifically within these less accessible groups. The challenge is huge and can seem insurmountable. But to limit HIV transmission, reduce preventable hospital admissions, improve patient support and overall outcomes, it is a topic that must be addressed. |
| * Names have been changed | * Names have been changed |
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