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

TB in South Africa TBHIV South Africa481/ Western Cape917/ Townships1200/ % antenatal

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

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

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

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

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

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

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

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”

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

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

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

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

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

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?

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?

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.

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

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?

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?