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Challenging HIV stigma in Ireland’s African communities

By Mindo - 04th Dec 2018

The HIV in Ireland, 2016 report from the Health Protection Surveillance Centre (HPSC) highlighted that people from sub-Saharan Africa presented later in the course of their HIV infection than all other groups. It said additional strategies were “urgently needed” to reduce the proportion presenting with late diagnosis and advanced disease.

Of the people from sub-Saharan Africa diagnosed with HIV in 2016, some 36 per cent presented late (compared with 20 per cent from Europe and 23 per cent from Latin America). In terms of new diagnoses (excluding those previously HIV positive) some 56.5 per cent presented late, compared with 37.9 per cent from Europe and 46.9 per cent from Latin America.

Overall, 25 per cent (n=129) of new diagnoses related to people born in Ireland, 61 per cent (n=311) were born abroad and 13 per cent (n=68) did not have information on country of birth. Of those born abroad, 36 per cent (n=113) were born in sub-Saharan Africa and 33 per cent (n=103) in Latin America.

 Data on CD4 count at diagnosis were available for less than two-thirds of the new diagnoses in 2016, which made “the analysis of data on stage of infection difficult”. According to the report, thirty-seven per cent of all people diagnosed in 2016 presented late and among those without a history of previously being diagnosed with HIV abroad, 44 per cent presented late.

“Groups where additional efforts are needed to detect HIV infection earlier are those from sub-Saharan Africa and those aged over 40 years,” the HPSC report stated.

The report for 2017, released by the HPSC in November, shows that late and advanced presentation by people from sub-Saharan Africa, and other groups, remains of significant concern.

“The proportion of people diagnosed at a late stage of infection remains high overall and is particularly high in older age groups, in PWID [People Who Inject Drugs] and in those from Central and Eastern Europe and Sub-Saharan Africa. This is of concern as late diagnosis is associated with a 10-fold increased risk of short-term mortality (within a year of diagnosis) and an increased risk of onward transmission.”

According to the report, there were 492 diagnoses of HIV notified in Ireland in 2017 (compared with 508 in 2016). People from sub-Saharan Africa represented 60.7 per cent of diagnoses among heterosexuals.

In 2017, some 26 per cent (n=130) of people diagnosed with HIV were born in Ireland, 63 per cent (n=308) born outside Ireland and 11 per cent (n=54) did not have information on country of birth. Twenty-three per cent originated from countries in sub-Saharan Africa, 20 per cent from countries in Latin America, 8 per cent from countries in Central and Eastern Europe and 7 per cent from countries in Western Europe.

In respect of all diagnoses, some 45.4 per cent of people from sub-Saharan Africa presented late and 24.7 per cent at an advanced stage (compared with 49.1 per cent and 31.8 per cent for people from Ireland; 23.3 per cent and 13.3 per cent for people from western Europe; 61.3 per cent and 29.0 per cent for people from Central and Eastern Europe; and 23.3 per cent and 8.9 per cent for people from Latin America).

In respect of new diagnoses, some 60.5 per cent of people from sub-Saharan Africa presented late (surpassed only by people from Central and Eastern Europe at 66.7 per cent). Some 32.6 per cent of presentations by people from sub-Saharan Africa were at an advanced stage (surpassed by people from Central and Eastern Europe at 38.1 per cent and people from Ireland at 34.8 per cent).

Barriers

For several years, the non-governmental organisation AIDS Care Education and Training (ACET) has worked with migrant-led faith communities to promote awareness of HIV and encourage testing. This has involved training of faith leaders on HIV and support for people diagnosed with the infection.

On behalf of ACET, researcher Ms Ifedinma Dimbo has been examining the barriers to HIV testing experienced by African communities in Ireland.

Ms Dimbo reviewed existing HIV testing protocols and community testing centres and interviewed professionals and volunteers working in these centres. She also spoke to pastors of faith-led migrant communities and then randomly selected 15 black immigrants from sub-Saharan Africa for their views on HIV testing.

A key finding was that some Africans feared a visit to a sexual health clinic would become knowledge among their kin in Ireland, she told the Medical Independent (MI).

“The diaspora Africans actually create villages – where the people in the church becomes the village, where the people in the ethnic association and the people from the same town living here become the village – these are the different diaspora villages that these people fall back to for support, friendship, relationships.

“So if anything happens to it – that is, the stigma of being exposed to have HIV, they may be divorced from that group and they haven’t yet integrated into the wider Irish society… They are very, very careful about revealing what they are doing.”

Moreover, some Africans doubt the existence of HIV in Ireland. In African countries with significant prevalence, people will have grown up with posters on HIV at every street corner and in every school.

“But when they came here, they have never seen anything about HIV, so they assume it’s not here, so they don’t even know they should go and test.”

Others believe HIV is untreatable and prefer not to know their status. Some are also sceptical that a HIV-positive person with an undetectable viral load cannot pass on the virus.

“There is a whole lot of information missing out there and you can begin to see why, as they say in my place [in Nigeria] ‘do you need to go and poke a lion that is sleeping?’ We need to develop a model that will suit them.”

She said Africans are “always in a hurry”; they wanted to know the results yesterday.

“One pastor said, the two weeks it took for the results to come out, he nearly died three times – that was the excruciating pain of waiting to know whether you are ‘going to die’.”

Ms Dimbo believes rapid testing and a venue that offers optimum privacy would greatly appeal to Africans. There was also significant interest in the concept of home-tests (the first over-the-counter home HIV test licensed in Ireland became available in recent months in pharmacies).

Testing model

According to ACET’s CEO Mr Richard Carson, the organisation is exploring how it would provide rapid HIV testing in migrant-led churches or other appropriate venues. He said this would complement its existing work with faith-led communities on HIV awareness and integration.

Mr Carson said that until recent years the HIV testing model in Ireland was largely based on encouraging people to get tested in a clinic.

“In the last few years what has happened, led by the HSE and funded through some projects like the KnowNow project, is bringing testing to people,” he explained, noting advances in rapid testing technology.

He believes addressing the specific health needs of ethnic minority communities, as well as issues of integration, have fallen victim to the economic crash. Now the country must play catch-up.

“We need to count the cost of the last decade,” he told MI. “In 2008, Conor Lenihan was the Minister for Integration, he was about to launch [the document] Migration Nation and literally within weeks the crash happened. We stopped doing the next chapter.

“The first decade it was all new, ‘what will we do?’ The second decade you have really got to get going. We really did nothing – that section in the Department of Justice just closed down for nearly a decade. We lost a decade and it was a crucial decade, which is why you’ve all these gaps all over the place, of language, of knowing what to do, of moving beyond uni-directional integration to truly being multicultural; all of these we are playing catch-up on now.”

Meanwhile, a spokesperson for the HSE said the forthcoming National Intercultural Health Strategy is expected to contain actions relevant to the issue of HIV and STIs among migrants.

They continued: “HSE Social Inclusion and HSE Sexual Health and Crisis Pregnancy Programme (SHCPP) have developed a multi-faceted approach to help promote good sexual health among the direct provision community (DPC), which includes migrants from sub-Saharan African communities.

“Work includes an integrated communications and educational plan in partnership with AkiDwA, Balseskin reception centre and sexual health NGOs from around Ireland, to help facilitate positive sexual health messaging, HIV and STI testing among high-risk groups including migrants and educational outreach workshops in DPC. The workshops will further support, complement and expand the provision of the National Condom Distribution Service (NCDS), providing condoms and lubricants for men and women in DPC.

“SHCPP provides funding to sexual health NGOs (currently within the KnowNow project) for community HIV testing among at-risk populations, which includes migrants.”

 Posters are currently being developed in conjunction with migrant NGOs to raise awareness around the benefits of HIV treatment in relation to staying healthy and preventing onward transmission of HIV, and to promote HIV testing.

“Following consultation with migrant NGOs, the patient information leaflet ‘A guide to sexually transmitted infections (STIs)’ was translated into French, Spanish, Portuguese, Russian and Arabic. Patient information on PrEP [pre-exposure prophylaxis] was translated into Portuguese and patient information on HIV treatment was translated into French, Spanish and Portuguese, for the relevant migrant populations,” concluded the spokesperson.

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