Track 5 - Community Exchange Encounters
by Ingrid Meintjes-Moakes and Sipho Mthathi
Ingrid Meintjes-Moakes
Ingrid Meintjes-Moakes is an HIV/AIDS and women's rights activist. She has worked for the Treatment Action Campaign and currently writes and researches on the intersection between women's rights and the HIV/AIDS epidemic with an emphasis on community interventions. She served as Rapporteur for Track 5 at the South African AIDS Conference 2007.
Siphokazi Mthathi (Sipho)
Siphokazi Mthathi (Sipho) was, until recently, the General Secretary of the Treatment Action Campaign. She has been with TAC since 1998 and developed the internationally renowned Treatment Literacy Programme at TAC, which has been recognised by UNAIDS as a best practice. She is currently continuing her work with communities and pursuing her writing career.
Track 5 at the South African AIDS Conference 2007, entitled Community Exchange Encounters, provided a unique and timely focus on the HIV/AIDS epidemic from the perspective of South African communities.
Over the past 25 years, HIV/AIDS has brought a great deal of suffering to individuals, families and communities, but they have also brought new opportunities for transforming relations with, between and within communities. Community advocacy has contributed much to the progress which has been made in the arena of human rights, access to treatment, technological interventions for treatment and prevention and best practices for care and support.
In this track, communities were broadly defined to include people living with HIV/AIDS, impacted by HIV/AIDS, people vulnerable to HIV infection, and those who interact with communities on issues relating to HIV/AIDS. The Track had three main threads:
- Taking stock - Thinking futures: This thread looked at what HIV is doing to our communities, the specific points of vulnerability and how to deal with the realities brought by HIV/AIDS.
- Where communities lead: Community-led interventions and best practices were identified in areas such as prevention, treatment, care and support; human rights, stigma and discrimination; community participation in policy-making processes and health systems; advocacy and community mobilisation and building community HIV/AIDS literacy.
- Communities in dialogue: This section of the track explored how best to ensure community participation in policy making, research and priority identification processes.
Communities - Where the battle will be won or lost
Community Exchange Encounters highlighted where the substantive work to curb the epidemic must be done. The voices, experiences, knowledge and realities of those at the coalface of this epidemic have, for too long, been ignored in medical, behavioural and policy interventions. As the public health system buckles under the pressures of the epidemic, the sick are being sent home to be cared for by family and community members. In this way, the burden of the epidemic is being shifted onto communities, usually those least able to afford it. Volunteer home-based carers and community health workers, grandmothers, wives and children are unpaid, unsupported and unprotected as they try to save lives. The poor are taking care of the poor. It is imperative to understand what is happening to our communities if we are to make inroads into curbing this epidemic.
Academics, medical professionals, HIV/AIDS experts and politicians have, to a large extent, developed theories, strategies and programmes in isolation of the realities evidenced at the community and grassroots level. We are increasingly aware that structural factors, including socio-economic and gendered power relations, are barriers to effectively curbing the epidemic. But each community has its own mix of social, economic, cultural, political and gendered norms, which creates a multi-faceted contextual reality which must be understood in each instance for HIV/AIDS interventions to be successful.
As South Africa begins to grapple with the implementation of the new National Strategic Plan for HIV and AIDS & STIs 2007 - 2011 (NSP), communities cannot be an afterthought. Intensive mobilisation across communities and sectors is fundamental in our approach to implementation; mobilisation to raise awareness of the NSP, of the rights and duties it places on us all - from state organs to community members, and of the barriers and challenges to achieving full implementation in our communities.
Most importantly, this Track highlighted the experiences of communities which show that the country is failing to deal with the socio-economic impact of this epidemic. As we move toward implementing the NSP, it is critical that this failure not be repeated.
Another revelation was that while programmes have been developed in isolation of the realities experienced in our communities, communities have developed their own responses.
A community response - Sihlenga Izimpilo Zama Zimela Home-Based Carers
One such example was the moving and eye-opening presentation delivered by Sihlenga Izimpilo Zama Zimela, a community home-based care organisation from the rural village of Zimela, KwaZulu-Natal.
Sihlenga Izimpilo Zama Zimela is a community-led intervention borne of the horrors and devastation brought upon their rural community by the HIV/AIDS epidemic. In Zimela, with a population of 80 000, tucked away in the mountains deep in Northern KwaZulu-Natal, 120 people die of AIDS each month - mostly youth.
The nearest town, with a clinic and services, is 50km away and transport costs are exorbitant for the mostly unemployed villagers. There is no electricity and water is collected from a stream, shared with cattle, goats and donkeys.
In 2000, the extreme drought - which still plagues the region - caused a cholera outbreak. The community thus formed a small collective of home-based carers (HBCs) to care for the sick and dying. But it was not long before these volunteers saw that HIV/AIDS and TB posed the real danger to their survival. Seventeen carers thus formed the community organisation Sihlenga Izimpilo Zama Zimela. They have grown to 80 carers, who visit those sick with AIDS and TB in their homes, providing care, information and as much assistance as possible. From carrying water and fire wood, to feeding, bathing and providing treatment information, these volunteers - mostly women - are trying to save their village. They do so without basic resources; without gloves, the carers only have plastic bags with which to protect themselves.
With little more than initiative, this organisation has networked, built alliances, received training and developed a community programme to meet the unique needs of their community. Yet these volunteer HBCs receive no stipend or support from the government, despite protocol that makes provision for community health workers.
The care and support responsibilities of the HIV/AIDS epidemic are turning the conceptions of "health work" upside down. Home based care is health work and should be remunerated as such.
The NSP must be informed by work being done in communities by communities. Implementation strategies, rather than reinventing the wheel, must evaluate and understand what is already happening in our communities and recognise, strengthen and support these initiatives. Such interventions are invaluable as they understand the nature of the epidemic in the community - the context, the culture, the language, the challenges, what works and what does not. Imposing "pre-packaged" programmes or programme employees from outside the community are no match for the commitment and local knowledge of community members dedicated to their own community.
Sihlenga Izimpilo Zama Zimela has shown the success achievable through collaboration with community members, NGOs, CBOs and FBOs. It is particularly noteworthy that the village Chief is integral to the organisation, working actively with and supporting volunteer HBCs to save the lives of his people.
An audience member summarised this presentation succinctly: This presentation sheds light on the 'positive spin' we hear at these conferences. Communities are being forgotten, therefore we must be cautious when told about the gains being made in the fight against HIV/AIDS. Huge challenges remain in our communities, especially in rural areas. This is the real face of the epidemic, and this is where we will either win or lose the battle.
The story of the Zimela group is just one example of how communities are taking on the challenge of HIV/AIDS and in some instances overtaking the state in responding to the epidemic. Many such examples of initiative and leadership can be seen when travelling in different parts of the country.
The role of employers and business
Every employer and business owner can have an immediate and far-reaching impact on the community in which they conduct their business or where their employees live. In addition, the sustainability of their enterprises and productivity of their workforce can be significantly improved by investing in these communities. More so than organisations and institutions alien to the community, community-led interventions have proven hugely successful in fighting the epidemic.
For example, a community outreach intervention in Madwaleni, Eastern Cape, which provides voluntary counselling and testing services, was reaching HIV-positive community members with higher CD4 counts (338 on average) than those presenting at the Madwaleni Hospital (184 on average). This is enormously significant. Not only can huge inroads be made into HIV prevention, but earlier testing allows for earlier treatment, ensuring that community members stay healthy and productive.
Healthy communities ensure healthy employees. Employers can do much for their employees by understanding the additional pressures posed by the epidemic in their personal lives. Ensuring the health of breadwinners also ensures that communities are protected from the additional vulnerabilities to HIV/AIDS posed by poverty. Most importantly, healthy communities build a healthy nation. Investing in and supporting community-led interventions through donations, skills-sharing, training, providing food security measures or service delivery can have an immediate, tangible, valuable and life-saving impact.
At the launch of the NSP in April 2007, every sector of the South African National AIDS Council (SANAC) pledged to do all they can to achieve the ambitious goals of halving the rate of new infections and providing treatment, care and support packages to 80% of those who need them. If we locate the response in and support, enable, resource and mobilise every community to respond to the needs of the epidemic, we can succeed.
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