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(2003; 20 pages) [French] [Spanish]
NGO toolkit for improving access to HIV/AIDS treatment
Developed in 2002, the Handbook on Access to HIV/AIDS Treatment is a resource for the various groups involved in providing treatment for HIV-related conditions. It is also intended to be a concrete acknowledgement that, without the work of nongovernmental organizations (NGOs), the global response to AIDS would have been much smaller and less effective than it is today.
While the International HIV/AIDS Alliance, WHO and UNAIDS Secretariat will provide the finished product, the essential "raw material" was provided by dozens of individuals and groups in Africa and Asia. Their participation during design and field-testing gave the handbook the benefit of their experience and expertise, and kept it focused on the practical needs and challenges of providing treatment to people living with HIV/AIDS.
Groups of persons living with HIV/AIDS, NGOs and community based organizations (CBOs) have been at the forefront of prevention and care since the world first became aware of the epidemic two decades ago. Instead of leaving these tasks to the medical profession or public health authorities, they became partners in providing HIV-related commodities and services - in some places, they have been the only providers. They have also built roles for themselves as advocates and teachers, changing the way the world thinks about HIV/AIDS and responds to the people who live with it. In so doing, they have built hope, spread important skills and ensured better delivery of HIV/AIDS-related services and commodities.
The handbook aims to widen the participation of these groups yet further by providing a collection of information and tools for understanding, planning and undertaking work on HIV/AIDS-related treatment.
Initial feedback suggests that the handbook is serving its purposes well:
Dr Chhim Sarat, Senior Project Officer Care and Support, Khmer HIV/AIDS NGO Alliance (KHANA), Cambodia: We use the handbook in all of our care and support workshops, taking some parts of it to develop the curriculum and to discuss the issues related to access to treatment, etc.
Chanda Fikansa, former Assistant Programme Manager of the Inter-grated AIDS Programme of the Catholic Diocese of Ndola, Zambia: We used the handbook in a workshop setting involving home-based care programme staff... [It] has also been used with specific target groups of community volunteers. We used the handbook to look at ways of improving the quality of the care delivery that the home-based care programmes were providing. By looking at the barriers to treatment we could look at what things we could do to improve care and support. The handbook was particularly useful for facilitating the discussion and flow of ideas. It's also useful for those who are not experienced in care and support, but familiar with some of the issues. It is a useful tool to show what information you need to provide good care and support and to think through the issues involved.
David Musendo, Deputy Director, Family AIDS Caring Trust (FACT), Zimbabwe: So far, we've used the handbook in two regional workshops and at one national workshop. FACT staff have also adopted some of the sections from the toolkit for local training workshops in their different projects. The toolkit is user-friendly and easy to adapt for local use. The language is simple and relates to what people can realistically do at the grass-roots level. There is little medical jargon.
Boithumelo Huma, Vukuzenzele Project Co-ordinator, AIDS Consortium, South Africa: We used the handbook at a workshop for community volunteer facilitators from CBOs in the Gauteng and Mphulumalanga Provinces, NGO workers from Swaziland and Lesotho, and lecturers from WITTS University. After the workshop, the community facilitators shared information in the handbook with caregivers in their communities, most of whom are illiterate. This was important in helping families know what is available to them and to encourage them to demand that it becomes accessible. The handbook also helped facilitators to improve relationships with other care providers - they've reached out to social workers and priests, and visited clinics to discuss access issues with nurses. The handbook has shown caregivers the importance of different service providers working together to cover all aspects of care for people living with HIV/AIDS. This has resulted in more respect between service providers and more cross-referrals. The WITTS University lecturers now include access to treatment in their curricula and have developed a programme with the AIDS Law Project.
The pre-publication version of the handbook can be accessed at: http://www.unaids.org/publications/documents/health/access/NGOtoolkit/index.html.