Health systems barriers to adherence in antiretroviral treatment programmes in rural South Africa Dr Brian van Wyk School of Public Health University of the Western Cape Dr Fiona Larkan Centre for Global Health Trinity College Dublin

BACKGROUND South Africa has the largest number of people with HIV: 5.38 million (mid-year estimate Statssa 2011) Largest public ART programme worldwide: 1.4 million National HIV counselling and testing campaign aim to test 15 million people by 2011 This will further increase the number of people needing HIV treatment, care and support.

CHALLENGES Human resources for health shortages Late initiation of treatment Sustaining large numbers of people on treatment and in care Adherence to treatment in ART programmes

POOR ADHERENCE Patient factors Treatment factors Health services factors Socio- political factors Psychosocial Knowledge of treatment Social support Disclosure Attitudes & Beliefs Substance Use Travel Work Pill burden Side effects Formulation of Drugs Opportunistic Infections Patient Provider relationship Availability of Drugs Quality of Care Waiting Times Stigma Discrimination Unemployment Structural violence

METHODOLOGY 3 year ethnographic study in 3 sites in peri-urban and rural Western Cape funded by a Global Health Research Award (GHRA 2007/8) Aim: to explore barriers to access and adherence to HIV treatment Methods: qualitative interviews, participant observations Sample: patients on pre-ART and ART, identified at health facilities and in the community Key informants: nurses, doctors, pharmacists, home-based carers and community health workers

MAIN FINDINGS: PATTERNS OF ADHERENCE 1.Unplanned treatment holiday 6 months on/off; 9 months on/ 3 months off 2.Non-compliant Chaotic adherence 3.Partying 6 days on/ one day off 4.Playing 10 weeks on/ 2 weeks off 5.Secretive skips two or three doses of medication per week

TYPE OF PATIENTINTERVENTION REQUIRED POLICYPOLICY/ IMPLEMENTATION GAP (Unplanned) Treatment holiday Plan for treatment holidays; “Positive living” Entry to HIV treatment only via testing No support No sharing of records between facilities Need for social capital, work opportunities ChaoticTreatment literacy Food/living support Counselling in pre- ART Social disability grant Integrated case management that includes welfare of patient PartyingEducation about alcohol use Mixed messages about alcohol and medication in TB and HIV programmes Training for lay counsellors on substance use and nutrition PlayingEducation about CD4 count and health status Temporary disability grant for 6 months Disability grant = de facto poverty alleviation grant SecretiveSupport to disclose status Identify treatment buddy in pre-ART Stigma and discrimination in community.

“Sick clinics” System fails the patient by not providing the necessary support for health service delivery Moreover, in one case we found the clinic itself to be dysfunctional and hence the primary cause of non-adherence for its patients Designated district level ART clinic for a large catchment area Funding ring-fenced for ART clinic which was based on the grounds of regional hospital Competition for financial resources (and consequent lack of co- operation) between two ‘separate’ facilities Inability to retain doctors to work in rural environment (5 doctors in 6 months) Disruption of service to patients – patients sent away and told to ‘come back another day’.

Acknowledgements Team members: Fiona Larkan, A Jamie Saris, Thato Ramela and Paschaline Stevens Supported by CDPC Funded by GHRA 2007/8 (Irish Aid and HRB)