HIV testing and late diagnosis rates in the UK African community will not improve unless we look at the wider reasons people don’t test, a community meeting on the subject concluded last month.

Dr Ade Fakoya of the Greenway Clinic, Newham, told the UK Community Advisory Board (UK-CAB), the nation’s forum for HIV peer advocates: “We need to diversify where people are tested: but we also need to address the stigma and criminalisation that stop people being tested.”

He was joined by four peer advocates from the community who spoke about issues specific to men in general, gay men, women and young people.

Dr Fakoya said that the proportion of heterosexuals diagnosed late, with a CD4 count under 200 cells/mm³, has scarcely changed in the last ten years, and remains at 40 to 45% in men and non-pregnant women. As a result, more than twice as many heterosexual men (14%) as gay men (6%) have AIDS when they test HIV-positive.

Opportunities were still being missed for diagnosis, he added. Data from SONHIA (Study of newly diagnosed HIV infection amongst Africans in London)¹ showed that 84% of a sample of London Africans with HIV had registered with a GP, for a median time of three years, and that three-quarters had seen their doctor in the two years prior to diagnosis – most more than once.

Dr Fakoya said in many countries in Africa people do not test for HIV until they are quite ill. Getting an HIV test was usually the last in a sequence of healthcare conversations that started off with relatives and might also involve neighbours and traditional healers. Even people who do test early may then decide they don’t need to come back until they are ill and so are lost to care (see Lost to Care in HTU 191). Reasons for not accessing HIV testing in the UK may in part be due to traditional attitudes to health and health services.

Jabulani Chwaula of the National African HIV Prevention Programme (NAHIP) talked about men. The Bass Line 2009 survey² of African people in England found no sexual risk behaviour or unmet HIV prevention need that was more common in women than men. Men had more partners, more casual partners and more serodiscordant unprotected sex, and were more ignorant and less bothered about HIV (9% of men versus 4% of women disagreed with the statement “I want to avoid catching HIV”).

We need to diversify where people are tested: but we also need to address the stigma and criminalisation that stop people being tested. Dr Ade Fakoya, Greenway Clinic

Bass Line recommended more interventions for men but Chwaula said he knew of few programmes that sought exclusively to meet the HIV prevention needs of African men.

Bass Line found one third of the men with HIV exclusively had sex with other men (MSM). Bisi Alimi of the NAZ Project, which runs England’s only support group for African MSM, said that a culture of secrecy may mean official figures drastically underestimate the number of African men who are gay. Estimates had varied from 1.3% to 5% in Bass Line to 10% in a survey conducted by King’s College, London.

He turned on its head the idea that African men are basically heterosexual, with some having occasional gay liaisons, by pointing out that it was more credible that “In many countries, social stigma and discrimination means that many MSM who would otherwise be exclusively homosexual have sex with women too.”

Beatrice Osoro of Positively Women commented that for women, the biggest problems usually occurred after testing. Male partners were often opposed to women taking HIV treatment and were also reluctant to test themselves, partly due to a belief that “If one half of a couple has an HIV test, that is sufficient for both”.

Stigma related to not breastfeeding was still as strong as ever in the community, with bottle feeding immediately arousing suspicion of HIV. Beatrice said she knew a number of women who pretended to breastfeed.

Finally, Munya Mudarikiri, a first-year student at Manchester Metropolitan University, spoke up for young Africans with HIV.

He said that HIV is problematic for young people because “We don’t want to be under scrutiny, and try to be as similar to our peers as possible”. Doctors needed to help with concealing status: his clinic, for instance, gave him a keychain that doubled as a pill container.

“Initially secrecy offers you the opportunity to accept yourself,” he said. “But maintaining it adds weight to the claim that we have something to be ashamed of. How can the world accept us if we don’t?”

He had recently disclosed to a group of 19 friends, with positive results, he said. He was passionate about enabling peers to access services in time. “My father died of an opportunistic infection after 16 years of living with HIV. He wouldn’t take treatment. I don’t want it to defeat me the same way.”

• For information about the UK Community Advisory Board forum and meetings, see www.ukcab.net
• NAHIP – see www.nahip.org.uk