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
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”).
need to diversify where people are tested: but we also need to address
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
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, 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.”