Role of the community/volunteers in the delivery of the TB/HIV package:

1. School of Public Health and Family Medicine, University of Cape Town and Provincial Department of Health Role of the community/volunteers in the delivery of the TB/HIV package: David Coetzee February 2005 UNIVERSITY OF CAPE TOWN

4. TB in South Africa TB HIV • South Africa 481/100 000 • Western Cape 917/100 000 • Townships 1200/100 000 29% antenatal

5. Western Cape • HIV and TB highest in Townships in Cape Town • High unemployment, mostly informal housing

6. Perspective • Clinician who works in TB and HIV services • Public Health • Consulted with others working in both TB and HIV, and especially volunteers and PWAs • Not comprehensive • Stimulate discussion

7. TB/HIV services and volunteers Each programmes/services can learn a lot from the other especially with regard to volunteers The political nature of the issues HIV has had a political agenda

8. Where has the HIV/ART programme come from? • Driven by activists and PLWAs • Based on the individual • Grown through development of the needs of patients and showing that it can be done • Less formalised and standardised, open to change • There has always been an activist agenda

9. Where has the TB programme come from? • Driven by infectious disease and public health experts • Basic Public Health principles • Excellent technical programme • Cure 85% of smear positives • Never had a political agenda

10. HIV ART programme • Because of the activism and pressure on government to provide ARVs, the first patients have demanded that they be informed of the disease and treatment and they have taken responsibility for ensuring good results • At 6 months many patients will inform the clinician that their VL must be ascertained • Side effects: Patients are warned about, they are discussed and solutions found together usually in support groups • To do this you need volunteers, activist type of volunteer

11. Community/volunteers in HIV services • Driven by Treatment Action Campaign (TAC), an NGO campaigning for HIV-infected persons - need to show ARV programme works • Mobilisation of volunteers infected and affected – because community has many other issues of more importance – how to get employment – they used other issues to mobilise as well – basic income grants • Treatment Action Campaign – grassroots = urban poor • Campaign is broader than HIV • Access to all medicines • TB – now on TAC agenda – activism improve quality and make more user friendly

12. TB service • Programme purely within the health domain • No activism • Patient has little knowledge of the disease and takes no responsibility for ensuring cured • The end point or outcome is a public health outcome - the sputum result – how many negative at 6 months • Most do not know of the need for sputum specimens • Side effects: Patients usually never warned about and told those are “normal”

13. TB service • CHWs paid supervise 40% of TB patients – get the meds to the patient and watch them take their meds • It has been difficult to get volunteers to do this

14. How are volunteers involved in HIV service? • Treatment assistant – buddy system (who lives with the patient – usually family member) assists and supports patient taking ARVs (one centre gone for well paid treatment supporters) many buddies on ART themselves • Counsellors support patients with all aspects of HIV – dealing with diagnosis to support with taking ARVs • Support groups run by patients themselves with facilitation of counsellor prepare pts for going on ART and maintaining on ART • Volunteer involvement – waiting room informing patients about HIV and ARVs • Volunteers usually HIV-infected (often on ARVs) • System arose from the needs of patients – developed as pts went on ART – activism the need to show it works

15. Activists in TB? • Only activists in TB are health workers trying to get things to work • Judy Dick’s work shown a “buddy” system works • Farms for TB • Excellent results • Providing a support environment for TB patients • Work presented at IUATLD Paris Oct 2004 • Awaiting acceptance for publication

16. NGO activism and support • Activists role – at national level antagonistic relationship between TAC and government relates to commitment and policies • Supportive role – good relationship between TAC and local health services

18. Thailand • Government funds PWAs to play important role in community education, reduce discrimination and in peer support • Grass roots - movement of the rural poor • PHA peer counsellors role in informing community about treatment, basic information on HIV, discussing treatment plans and disclosure, problem solving relating to adherence, visiting etc • But within – group with activist role – access to meds

19. How do we get volunteers in this situation? • “Volunteers driven by political agenda” Zackie Achmat • Community – many other issues of equal, if not more importance – how to get employment • Volunteers without a political agenda want to be paid?

20. Trials directly observed therapy vs not • Difficult to find persons to act community DOTs supporters • How do we get volunteers to work as community DOTs supporters? • How do you motivate them? (?pay them) • How do they support patients? • How do you give them a political agenda?

21. Mobilisation? • Who? • How? • Why has HIV been able to mobilize volunteers? • Political commitment? • How do you get political commitment to TB? • Activists say – you have to put it on the agenda.

22. Where and how can volunteers be involved? HIV Promoting attendance at services (stigma) Providing information on TB, HIV and ARVs Providing support in general (stigma) Providing adherence assistance and support TB Preventing HIV Promoting VCT Promoting health seeking behaviour Providing information on TB and HIV Providing support in general Providing adherence assistance and support

23. Research issues? • Activist How do you get TB on the political agenda? How do NGOs mobilise volunteers around health issues? • Health systems NGOs – activists but also support and work with services? • Technical operational issues (previous slide) How do we use volunteers to promote adherence? Will support groups driven by TB patients themselves improve adherence? Do we need community-based treatment supporters - “troubleshooting” role? • Rather than volunteers should we look at lower paid levels of workers such as counsellors and peers educators? Lack of operational research in these areas?

24. Discussion • How do we stimulate people to be involved? Do we need NGOs and CBOs with agendas to mobilise them • Technical and operational How best to use volunteers? Case finding? Adherence? What are the best models?