HIV positive men as responsible citizens and patients

South Africa's national anti-retroviral therapy programme and the Treatment Action Campaign (TAC) have been at the forefront in fighting HIV/AIDS. Rolling out anti-retrovirals nationally and ensuring treatment adherence is far from easy, however. HIV positive people can help themselves and others by being responsible citizens.

By 2005 in South Africa, 150,000 people were on anti-retroviral therapy (ART): of these 70,000 got it through the public sector. Although up to 700,000 people are estimated to need ART, only 18 percent of those who need it from the public sector are accessing it. Access to treatment is also uneven between rural and urban areas and across provinces.

Of equal, if not greater, concern is whether a patient follows the prescribed treatment routine closely (treatment adherence) which is vital. Expanding and accelerating ART at the expense of ensuring that patients know how to take the drug properly has compromised adherence and increased the likelihood of drug resistance. 'Second line' drugs needed to cope with ART resistance are very expensive.

Creating empowered patients

South African public health professionals are calling for 'empowered patients' who understand HIV/AIDS issues well and who can help in dealing with the current situation. This demand for a 'new contract' between health care providers and patients is similar to the Medicins Sans Frontières and TAC treatment literacy approaches that seek to produce knowledgeable and 'responsible citizen-patients'.

HIV positive people can fulfil their role as responsible patients as well as citizens by demonstrating treatment adherence, disclosing their HIV status, using condoms, abstaining from alcohol abuse and smoking and so on. The aim of this is to promote health rights and responsibilities and create non-hierarchical relations between providers and patients. Support from the community promoting the rights of people living with HIV and AIDS is essential to achieve this.

However, most public health settings are hierarchical and often authoritarian. Since support groups do not exist everywhere, how can we produce these empowered and knowledgeable citizen-patients? Several questions arise:

• Are health care workers willing and able to initiate processes of 'patient empowerment'?
• How can HIV/AIDS programmes reach out to men, given that clinics in South Africa, and elsewhere, are usually 'women's spaces' and men tend to attend clinics only when they are seriously ill?
• How can men be persuaded to be tested, and if HIV positive to commit themselves to treatment adherence, lead responsible and healthy lifestyles, and practice 'safe sex'?
• How to involve men more actively in HIV/AIDS community mobilisation?

The Khululeka Men's Support Group in Gugulethu, Cape Town is a good example of how men can to change their lifestyles and become involved with community-based HIV/AIDS work. Strong and charismatic leadership from Phumzile Nywagi, a former TAC activist, inspired these men to get involved.

The group does AIDS awareness work in bars, railway stations and prisons. They also tackle problems relating to substance abuse amongst themselves and others.

This group of 20 men living with HIV and AIDS made innovative attempts to develop new ways of thinking about themselves and living out their roles as men. Combined with ART and community-based activism (such as participating in the TAC and men's support groups) they were able to mutually support themselves, promote long-term treatment adherence and adopt 'responsible' lifestyles.

Experience from the Khululeka Men's Support Group shows:

• Community-based support that promotes community health mobilisation, specifically targeting men living with HIV and AIDS, needs to be developed and supported.
• Programmes should stress health rights and responsibilities.
• Men's groups can help men and women, to recognise the significance of rights in relation to sex, gender and health, while also emphasising responsibility and vulnerability.

Steven Robins
Department of Sociology & Social Anthropology, University of Stellenbosch, Private Bag X1, 7602 Matieland, South Africa
T +27 21 808 2090
F +27 21 808 2143
robins@netactive.co.za

See also

'From Rights to 'Ritual': AIDS activism and treatment testimonies in South Africa', American Anthropologist 108 (2): 312-323, by Steven Robins, June 2006

Sexual Rights and Sexual Cultures: Reflections on the 'Zuma Affair' and new masculinities in South Africa, Journal for Southern African Studies, by Steven Robins, forthcoming 2006

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