HIV/AIDS DEPARTMENT Rachel Baggaley Eyerusalem Negussie Andrew Ball

1. HIV/AIDS DEPARTMENT Rachel Baggaley Eyerusalem Negussie Andrew Ball

2. Starting and staying the course: HIV linkage and retention in care Improving retention at all points along the cascade: the WHO perspective

3. Retention in HIV care – the leaky cascade Only 40% know Testing Lifelong retention on treatment From testing to treatment initiation HIV+ population Tested Assessed Not tested The leakiestleak ART eligible Not assessed Who knows! Limited data for ART for treatment. No data for TasP or PMTCT B+ Initiate ART Not yet ART eligible Lost before ART initiation Retained through first year Retained through ≈5 years Pre-ART care until ART eligible Lost in first year Retained 5-30+ years Up to 95% patients lost in pre-ART period Lost by 5 years Lost before ART eligible Lost after 5 years

4. Delivery Retention in PMTCT programmes – even more complex Postnatal MCH visits – FP, immunisation, etc. ANC booking ANC visits 18m check Retention in MCH 6/52 check Initiate ART HIV test Monitor ART CD4 Retention on ART 0M 12M 18M

5. Why the leaks?Findings from a WHO e-survey of 20+ countries: • Step 0 – testing • Psychological – lack of perceived benefits, stigma, discrimination, fears, denial • Health service– lack of easy access/opportunity for men, adolescents, and key populations • Step 1– testing to enrolment in care • Psychosocial – stigma, denial of +ve status, "not ready to accept diagnosis/embark on life long care" • Health service – poor links/referrals from testing to services, no/limited/poor/ counselling post diagnosis • Step 2 – enrolment in care to eligibility testing • Health service– delays in receiving CD4/lack of CD4 testing, crowded clinics, distances to clinics • Psychosocial– lack of understanding/information – especially among those feeling well • Step 3 – eligibility to initiation on ART • Death– technically not LFU… • Psychosocial– lack of support, non-disclosure, fear of ART side effects, disbelieve in effectiveness of ART • Health service– same as above, stock outs • Step 4 – ART start to life-long ART • Treatment-related– stopping ART because of feeling better, pill burden, and treatment fatigue • Death– especially in first year following initiation • Health Service – high # appointments → transportation costs, missed work and home responsibilities, stock outs • Migration – Mobile populations, economic and job opportunities • Undocumented transfers (‘silent transfers’)– to other ART service providers • Continuation of care problematic for incarcerated patients • Alternative/spiritual healers – alternative health beliefs and influences Adolescent, pregnant women, men, >50s, low CD4→ worse retention

6. How to plug the leaks • Better linkages from testing to care • Accompaniers • eHealth referrals and follow up • Doing "something" (effective and acceptable) in the pre-ART period • Define a pre-ART package • Provide a service • Better assessment for eligibility • PoC CD4 • SMS return of results • Making services nicer, better, easier, quicker, cheaper (for patient and health system) • Closer to home – decentralization • Easier for patients – less visits • Integrated with other health services • Task shifting and peer support

7. WHO – Improving retention Retention on treatment – how are we doing on reporting? Based on the published evidence • Good data up to 36M after ART initiation • Retention at 24M ≈ 70-80% • Variation among facilities, programmes, and populations • Up to 40% of attrition – unreported deaths • Up to 40% informal transfers • ≈ 20% withdrawals and reported deaths • Little known about retention at different CD4 levels, esp >350 • But…low CD4 poorer 'retention' • Little known about long-term retention • Few studies report > 3 years’ median follow up • Almost no studies report > 5 years’ median follow up • Guideline changes (new ARV regimens, earlier ART initiation, decentralization) will likely affect retention in first year and over lifetime

8. WHO retention in care meeting Sept 2011 Retention in HIV programmes: Defining the challenges and identifying solutions Meeting report (13-15 September 2011, Geneva, Switzerland) http://www.who.int/hiv/pub/meetingreports/retention_programmes/en/index.html • Retention meeting summary & next steps • Failure to link to and retain patients in care →important adverse individual & public health consequences • The first step is getting people with HIV diagnosed, as currently the majority remain unaware of their infection • The weakest link is from testing to care – many current models fail to adequately link people to care following HTC • Promotion of earlier HIV diagnosis and better linkage to care is a key aim of the new WHO strategic HTC framework • Patient loss to follow up is often significant in the pre-ART period • A minimum package of pre-ART care and prevention services is required to provide effective interventions and retain people at this stage • Adapting services that are appropriate to context and acceptable to patients, using community support structures and organizations, mobile technology and point of care diagnostics can all support patient retention • Monitoring patient retention in care is currently inadequate – 3 tier reporting systems, unique patient identifiers • Consensus on indicators, definition of terms and time periods would aid programme comparisons. Ezcollab retention in care site http://ezcollab.who.int/Community.aspx?c=056fa8f5-bcfcaresite

9. Extra slide

10. Retention rates for antiretroviral therapy at 12, 24 and 60 months for selected countries, reported to WHO (2011) 84% 78% 72%