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

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

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. Retention on treatment – how are we doing on reporting?
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)
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

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%
To add the values of the medians , bigger fonts