Understanding time needed to link to care and start ART IAS Paris July 2017 Janet Seeley

Background HPTN-052 – after the release of interim results ART was offered to all participants in the delayed-ART arm, regardless of CD4+ count 17% of participants in these participants had not taken up the offer after one year because believed CD4+ count too high too healthy to start treatment fear of side effects (Cohen et al. 2016)

Sisonke Home-Based Counselling and Testing RCT team found that linkage to care influenced by a complex interplay of emotions motivational factors living situation relationship dynamics responsibilities and personal resources (Naik et al. 2017)

Testing and Linkage to ART in HPTN 071 Tests conducted in households by Community HIV-care Providers (CHiPs) CHiPs support linkage to government health facilities CHiPs return to household to check if linkage has been made ART provided through routine government health facilities

Qualitative Cohort: Methods Zambia: Cohort of 62 individuals South Africa: Cohort of 88 ‘families’ Key interest groups recruited Data collection: Jul 2016 – Nov 2017 Ethnographic/participatory research methods Data collection focused on Household composition; place and space; how they get by; love, sex and romance; relationships of power; hopes, ambitions, fears

Qualitative Cohort: PLHIV Total Zambia 31 South Africa 50 81 Gender Cisgender women Cisgender men Transgender women 18 13 34 3 52 26 Age 12 - 24 25+ 11 20 16 34 27 54 Treatment On ART Not on ART 17 (2*) 14 35 (7*) 15 52 (9*) 29 * early treatment outside guidelines

Time from CHiP referral to ART initiation – Zambia and South Africa, overall Round 2, Arm A

Time from CHiP referral to ART initiation – by gender Round 2, Arm A In Zambia, time to initiate ART after referral to care in Round 2 was faster for men than women In South Africa, time to initiate ART after referral to care in Round 2 was faster for women than men

Time from CHiP referral to ART initiation – Zambia and South Africa, by community Round 2, Arm A In both Zambia and South Africa, there were differences among communities for the time to initiate ART after referral to HIV care

The difference that makes a difference (Bond, Chiti et al. 2016) Slower uptake Zambia Cross-border trade High levels of transience Several options for ART Distinctive client flow for PLHIV South Africa Overburdened health system Negative reputation of clinic Administrative challenges (clinic) ‘Gateway’ community Faster uptake Zambia Educated and middle class more dominant More stable Historically fewer HIV programmes Organised/less congested clinic South Africa Strong NGO support Smaller community Fewer new ART initiations – smaller clinic Clients relatively close to clinic

When it makes sense to individuals to start promptly In sero-discordant couples When pregnant When feeling ill Family history of HIV (and death) Co-morbidity (e.g. TB) Adolescents (guardian initiated, sometimes without knowledge of adolescent) – this may make sense for the guardian… but not to the adolescent.

Why some people need time Putting things in place (disclosure, support) Practicalities (livelihood demands) Acceptance/readiness (denial/anger) Navigating relationships Alcohol/drug use Food security Feeling fine, managing without treatment Using alternative treatment and/or strategies

Challenges in the health system Staff readiness, stress and attitude Waiting times/congestion Worries over risks of being seen at a clinic (stigma) Change in guidelines legacy of CD4, low knowledge of TasP/UTT Occasional discrepant HIV result Challenges in restarting after defaulting

Conclusion Sometimes it makes sense to a person to start treatment promptly, but not always One-size does not fit all Take into account social realities Clients have concerns and fears about the scaling up of treatment and the burden on the health system