HIV/AIDS DEPARTMENT Rachel Baggaley Eyerusalem Negussie Andrew Ball.

H I V / A I D SDEPARTMENT

Rachel BaggaleyEyerusalem Negussie

Andrew Ball

Starting and staying the course: HIV linkage and retention in care

Improving retention at all points along the cascade: the WHO perspective

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 5-30+ 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

kno

ws!

Lim

ited

data

for A

RT fo

r

trea

tmen

t. N

o da

ta fo

r Tas

P or

PM

TCT

B

+

Onl

y 40

% k

now

Lost before ART eligible

AntenatalPostnatal/

BreastfeedingLonger 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

Retention in PMTCT programmes – even more complex

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

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

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

WHO retention in care meeting Sept 2011Retention in HIV programmes: Defining the challenges and identifying solutionsMeeting report (13-15 September 2011, Geneva, Switzerland)http://www.who.int/hiv/pub/meetingreports/retention_programmes/en/index.html

Ezcollab retention in care site http://ezcollab.who.int/Community.aspx?c=056fa8f5-bcfcaresite

Retention meeting summary & next steps

1. 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

2. 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

3. 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 4. Monitoring patient retention in care is currently inadequate – 3 tier reporting

systems, unique patient identifiers

5. Consensus on indicators, definition of terms and time periods would aid programme comparisons.

Extra slide

Retention rates for antiretroviral therapy at 12, 24 and 60 months for selected countries, reported to WHO (2011)

12 months 24 months 60 months 0

10

20

30

40

50

60

70

80

90

100Botswana

Brazil

Cambodia

Burundi

China

Guatemala

Namibia

Malawi

Central African Rep.

Kenya

DR Congo

Indonesia

Median

%84% 78%

72%