1. The London VCT Project Adapting an HIV voluntary counselling and testing intervention from Kenya to the UK 14 th September 2007 MRC Social & Public Health Sciences Unit & Centre for Sexual Health & HIV Research (UCL)

2. Outline HIV among UK African communities – an overview The London VCT Project – Methods & Findings Future research

3. HIV Diagnoses by Ethnic Group (England, Wales, and N. Ireland) Numbers will rise, for recent years, as further reports are received. Clinician reports of new HIV/AIDS diagnosis HPA Annual Report – A complex picture 2006

4. Late HIV diagnosis among black Africans Reports of HIV/AIDS diagnosis and CD4 Surveillance n=2356 n=156 n=2571 n=1478 n=7450 HPA Annual Report – A complex picture 2006

5. Pattern of diagnosis and associated short-term mortality rate among BME adults Late diagnosis CD4 count <200 cells/mm 3 ; prompt diagnosis ≥200 cells/mm 3. Short-term mortality rate: percent of patients known to have died within a year of diagnosis. Reports of HIV diagnosis, deaths and CD4 cell counts Number diagnosedShort-term mortality rate Diagnosed promptlyDiagnosed late HPA Annual Report – A complex picture 2006

6. HIV testing rates are higher among people of African origin than they are in the general UK population NATSAL 2000: 36% of black African men and 44% of black African women reported ever having an HIV test (n=385) compared to 12-13% in general population An estimated 30% of Africans living with HIV in the UK remain undiagnosed Burns et al. Sexually Transmitted Infections 2005 HIV testing among UK African communities

7. Options for HIV testing in the UK Sexual health clinics Primary care Acute medical units (A&E) Community-based centres using staff from GUM (Fastest by Terrence Higgins Trust) for African migrants ? Few attendees but good uptake Well attended but few tests offered No data Less than 25% of attendees are black African

8. Barriers to testing Low self-perceived risk for HIV Lack of information about entitlement to care & unfamiliarity with NHS services Concerns linked to immigration – health is not a priority HIV related stigma – fear of consequences of positive diagnosis Mayisha II Report Prost et al. AIDS & Behavior 2007

9. Time to learn from Africa… … and its successful programmes: Primary & secondary HIV prevention interventions Voluntary Counselling and Testing (VCT) AMREF – Seeds for the Future, 2006

10. Our Partner: Liverpool VCT, Care & Treatment (LVCT) Kenyan NGO set up in 1998 with Liverpool School of Tropical Medicine LVCT aimed at asymptomatic persons wishing to know their status Based either in healthcare settings or in community centres Community centres run by non-healthcare workers Slide provided by Annrita Ikahu, Liverpool VCT Kenya

11. Decision to attend for testing Pre-test counseling The test process The implication of testing Risk assessment Risk prevention Coping strategies Liverpool VCT counseling process Decision to test No Yes Post-test counseling HIV -negative News given Risk reduction reinforced Discussion about Disclosure of HIV status HIV- positive News given Emotional support Discussion about sharing Discussion about onward referral HIV prevention Follow-up counseling and support as required Development of community awareness Slide provided by Annrita Ikahu, Liverpool VCT

12. The counsellor’s view I wake up in the morning and want to know my status. If I test negative how will I stay negative? If I test positive how will I live positively? It is only me who can change my life. If I have decided something for myself I am more likely to take action. LVCT Counsellor Nairobi, Kenya AHRF news, October 2004 (2) Photo by M.Taegtmeyer

13. Liverpool VCT Successes HIV Community mobilisation Successful scale-up of VCT in Kenya  from 3 VCT sites in 2000 to 680 sites in 2005 Trained 41 community organisations and 17 faith-based organisations to open 125 sites Marum, Taegtmeyer & Chebet, JAMA 2006

14. The London VCT Project AIM:To determine the feasibility and acceptability of translating a successful Kenyan VCT model for a UK context RATIONALE: High levels of undiagnosed HIV infection among UK African communities  Need for quality community-based testing services  Models of successful community VCT exist in Africa and can potentially be adapted for the UK Marum et al. JAMA 2006

15. The London VCT Project Methods: Five qualitative focus group discussions with 42 participants 16 interviews with key NHS & community stakeholders A stakeholder translation workshop (Liverpool VCT, NHS, CBOs) Objectives: Identify barriers to acceptability & facilitators (Framework approach) Identify ‘core elements’ of the VCT model and determine if/how they can be adapted in the UK

16. FGDs - Participants & Recruitment 42 participants from 14 African countries Invited to join the study through African community- based organisations and community venues Purposive sampling of young people, people living with HIV and women At least 15 participants were involved in the HIV sector either through employment or volunteering activities

17. Barrier 1 – HIV Stigma in African communities When I was starting [this relationship], I happened to mention to this friend of mine ‘oh, I’m going for an HIV test’… and she said ‘well why do you want to know?’. You know, as if I was stupid to talk about having an HIV test. Well you know, it’s not about you, but actually I’m stigmatised with HIV. I ought to be free to talk about having an HIV test and not made to feel stupid because I’m going… I shouldn’t feel like I have to hide from my own friends or from anyone. I agree with everything you say, but you know there’s still some stigma there. Female participant (South Africa), women’s group You know when you say African communities here, it’s completely different. In Kenya it’s [VCT] for the general population where […] 30%, 25% of the population are HIV positive, and even if there is still a lot of stigma, almost everyone knows somebody who is HIV positive. And when you just transfer that here, African communities, you know it’s nice but there is something that says we’re being targeted, it almost brings back that whole thing of ‘we’re the one’s that have the virus’. Why not make it community, but community to everyone? Female participant (Zambia), mixed group

18. VCT for Africans and by Africans? If you target Africans only, they just feel targeted. Maybe they say, they think I am carrying it. But if it is targeting everyone, then that is better. Female participant (Burundi), mixed group African communities need support, not patronising. We don’t need to be patronised. If we get the support and the training, we can do it even better than [in Kenya]… Male participant (Uganda), positive group

19. I am an African, and I still go back to Africa, and the fear of someone back home knowing what my status is… Male participant (Uganda), positive group I think going to the GUM clinic one can feel quite anonymous whereas if you go to a community-based service someone from the community might recognise you and there is always the danger that they might tell someone else. And because the stigma is so high people might stay away from the community- based service. Male participant (Sierra Leone), young people’s group Barrier 2 – Fears about the loss of anonymity

20. P: That is a lay person I am talking to as a counsellor? AP: Yes… P: Supposing I come out positive AP: Yes… P: And then I start crying, will he be able to handle me? (…) I am still trying to get around the fact that the counsellor is going to do all this and then refer me on. What is the time period from being counselled to accessing the medication? Female participant (Zimbabwe), young people’s group I think a major challenge will be the follow-up. Supposing the test comes out positive… Because the trauma suffered when you are HIV positive, what will happen? After you have tested in a community setting, what kind of follow-up will be there? Male respondent (Uganda), positive group Barrier 3 – Concerns about professional standards

21. Facilitators Community mobilisation It is not out there in my college, you know, that you could see signs, that there is counselling over there or that kind of stuff. They do not know anything about it. If you can get the counsellors out of their offices to go around and talk about the work, it would help. (…) Female participant (Zimbabwe), young people’s group Involving People Living with HIV In a way I would say you [as a person living with HIV] could become counsellors, because you have the experience, you are now the living example. You have more experience than anybody who comes in! Most of the HIV positive people who are living here are struggling. They are struggling to work. And this is work that we can do! Male & female participant (Uganda & Zambia), positive group

22. Positive aspects of VCT service 1. Fast results My friends have told me that the reason that they haven’t gone for a test is because the test results takes too long. I think the advantage with this service is that in 15 minutes you know your results. I do not think it matters where the service is, people will use it. Female participant (UK/Ghana), young people’s group 2. Community-based services as normalising 3. Quality counselling 4. Community ownership I wasn’t sure when we started [the discussion], but now I think this would be a great, especially if it is owned by Africans and positive people can be employed through it and share their knowledge. Female participant (South Africa), women’s group

23. Summary - acceptability Three main barriers to acceptability: HIV-related stigma in UK African communities Fears about loss of anonymity in community-based services Concerns about ability of non-medical VCT staff to maintain professional standards & support the newly diagnosed Several facilitators: Community sensitisation through African CBOs, churches and social venues Employing African people living with HIV as counsellors Having a ‘link’ person from sexual health services within the VCT centre to f acilitate referrals for treatment & care

24. Summary - feasibility: 1 rapid HIV test only – confirmatory test in sexual health clinic Staffing problem: no UK guidance on training non- medical staff for VCT Training: Concerns about non-medically trained staff running the service and lack of linkage to GUM for newly diagnosed Settings: CBOs, African business centres CBOs need to partner up with sexual health clinic to ensure fast-track referrals and set up Quality Assurance systems

25. “Regardless of the testing venue, 2 policy elements of Kenya's successful approach, if replicated elsewhere, may help increase access to testing: (1) the use of counsellors who are not clinical health care workers, and (2) allowing these counsellors to conduct in- room [rapid] testing.” Lessons from Kenya Marum, Taegtmeyer & Chebet, JAMA 2006

26. Next steps & implications (1) Pilot and evaluate community- based VCT with African communities in the UK Two ongoing pilots (Brent) Compare efficacy of VCT offered by organisations like THT and those specifically targeting Africans Reconsider existing restrictions on the use of rapid HIV tests for non- healthcare professionals

27. Next steps & implications (2) Need for a multi-level approach guided by local characteristics of HIV epidemic: Ongoing work on introduction of rapid HIV testing in primary care surgeries in East London with large migrant population New work on routine HIV testing using rapid tests in acute hospital settings situated in high prevalence areas (e.g. UCL ID ward & Trop. Med clinic)

28. The final word… So this scheme started all the way in Africa rather than here, that is where it started… I am actually surprised you know because you wouldn’t really expect this, not that I am undermining Africa. But there is actually something going on, something like this, I actually feel good about Africa. Male participant (Zambia), young people’s group

29. Acknowledgements Thank you to all participants in the focus group discussions & workshop. Additional thanks to Danny Wight (MRC SPHSU) & Caroline Yandell (Bristol University) The London VCT group: Graham Hart (UCL) Winnie Ssanyu Sseruma (UCL) Ibidun Fakoya (UCL) Annrita Ikahu (Liverpool VCT) Nduku Kilonzo (Liverpool VCT) Fiona Burns (UCL) Gilly Arthur (UCL) Ade Fakoya (AIDS Alliance) Miriam Taegtmeyer (Liverpool STM) John Imrie (Uni. New South Wales) Project funded by a grant from the UCL Clinical Research & Development Committee

30. Routine testing study Aims To study, in acute medical settings: (i)The acceptability to patients & staff of routine opt-out HIV testing (ii)The feasibility of incorporating opt-out HIV testing into the routine care of patients in these settings Design: an intervention development study (18 months) Phase I: Formative phase –Focus on determining the acceptability of routine opt-out HIV testing to patients & staff in acute medical settings Phase II: Pilot study –Focus on feasibility issues relating to routine opt-out HIV testing

31. Phase I: Formative Phase Aims: –To determine the acceptability of routine opt-out HIV testing to patients & staff in acute medical settings –To identify potential barriers and facilitators to uptake –To model the testing intervention for each acute setting (including templates for pre-test discussion/informed consent) Methods: –Qualitative focus group discussions with patients and staff in each of the three clinical sites Cross-sectional questionnaire survey among patients 18-60 attending acute medical settings Data to include: HIV knowledge; HIV testing behaviour; acceptability of different HIV testing strategies.

32. Phase II: Pilot study Aims: - To evaluate service-related barriers & facilitators to the provision of routine testing - To explore patients’ experiences of routine HIV testing in the context of standard NHS service. Methods: –Pilot of routine opt-out HIV testing in UCLH T8 (EIA); HTD Walk-in emergency clinic (POCT); Homerton AMAU (EIA) –Patient satisfaction evaluation questionnaire –In-depth interviews with patients offered a test during the pilot (n=10)

33. Primary outcomes: –The proportion of patients completing the questionnaire who report that ‘opt-out’ HIV testing would be acceptable to them –Qualitative information on barriers & facilitators to opt-out HIV testing for patients and staff in acute medical settings Secondary outcomes: –The proportion of patients who accept to be tested, for each of the testing strategies –The proportion of patients who receive their test result before hospital discharge –Factors linked to the acceptance of routine HIV testing as measured by the questionnaire –Barriers and facilitators to the implementation of routine HIV testing as documented through process evaluation and interviews with key staff conducted during the pilot