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Improving Access - Section 1: Setting the Scene
   Last updated: 28.06.02
Early discussions on access to HIV/AIDS-related treatment
PLHA groups, NGOs and CBOs have been at the forefront of prevention and care since the world first became aware of the HIV/AIDS epidemic. The mobilisation of NGOs, CBOs and PLHA groups has catalysed hope, developed skills and ensured better delivery of HIV/AIDS-related commodities and services. In some places they have been the only providers of these commodities and services. They have also courageously built roles for themselves as advocates and teachers, changing the way the world thinks about HIV/AIDS and responds to people living with the virus.

The early discourse around treatment in the developing world focused primarily on medical technologies and treatment delivery through existing health services. The critical role of NGOs, CBOs, PLHA groups and faith-based organisations was often overlooked, despite some clear examples of their good practice in care and treatment, and their unique ability to use local resources and keep costs down.

At the same time, even though the HIV/AIDS epidemic continued to spread aggressively and a climate of concern evolved around medical treatment for HIV and related health problems, many NGOs, CBOs and PLHA groups were reluctant to take up work on HIV/AIDS-related treatment. This was because they perceived it to be too technical, too complex and too costly.

During early discussions on improving access to HIV/AIDS-related treatment a number of key points emerged.

  • Drugs, meaning both antiretrovirals (ARVs) and other essential medicines, are unavailable to people in many parts of the world. Even when they are available, many factors such as affordability, discrimination against people with HIV and lack of effective health infrastructures combine to prevent individuals gaining access to the health care that they need. This also affects other basic health supplies such as gloves, condoms, syringes, laboratory tests etc.

  • The inability to fulfil the right to health means that most people with HIV, their families and communities, especially in resource-poor settings, have limited choices about HIV/AIDS-related treatment, if any.

  • ARV treatment in well-resourced situations makes a radical difference to the survival and life quality of people with HIV. Ethical considerations then arise. Should poor people with limited health choices have any right to these new and expensive treatments? If so, how can they be made affordable and accessible? Should general levels of health care be improved before adding in costly and complicated new technologies?

  • The broader contexts outside of ARVs were more difficult to think about, with the result that people in developing countries were excluded to a large extent from the debate. Their views, especially about the need to integrate HIV/AIDS-related treatment with the contexts in which it might be delivered, took a long time to be heard. Specifically, health needs relating to tuberculosis (TB), malaria and other infectious diseases posed huge problems. Acute community needs for food, shelter, clean water and education also had to be considered.

  • Medicalised assumptions that treatment was not an activity for ‘lay’ people got in the way of learning lessons from communities and providing support for local services. Experience showed that care and treatment through community approaches could be demystified, that ‘lay’ people could understand the uses and limitations of treatment and that they could make a significant difference to the health of people with HIV, whether or not ARVs were available and accessible.


1.1 The Alliance and its partners: learning from experience
Since 1994 much of the Alliance’s support to NGOs and CBOs has focused on work to prevent the spread of HIV and to provide care and support for people with HIV. In recent years access to treatment has emerged as an important issue requiring specific attention.

The approach of the Alliance and its partners to support for community action on HIV/AIDS has always focused on learning by doing. Work on improving access to HIV/AIDS-related treatment is no exception. The Alliance has learned lessons from community-based work in a number of countries: from home care, voluntary counselling and testing (VCT), vulnerable children and from the involvement of people with HIV. The Alliance and its partners continue to build on these experiences in their work on improving access to treatment.

Examples of the Alliance’s learning about access to HIV/AIDS-related treatment

In Cambodia, the experiences of solidarity groups, supported by the Alliance linking organisation (LO) in Cambodia, the Khmer HIV/AIDS NGO Alliance (KHANA), showed that discrimination is a key barrier preventing access to treatment, and that material needs and support are often a priority for people with HIV and their families. Initially, groups helped with small amounts of household supplies such as soap and sugar, but it soon became clear that more was needed. People required treatment as part of their care, and medicines were expensive and hard to obtain. Home care teams developed a home care kit containing basic medicines for minor infections and symptoms, and hygiene supplies such as bleach, dressings and condoms.

VCT has been a central element of NGO and CBO support and care for people in Zambia from the beginning. As a member of the Zambia VCT partnership, the Alliance – through its Zambia country office – learned that a key obstacle to the uptake of VCT was that people believed HIV treatment was not available, and that the appearance of symptoms (often the first point at which people consider being tested) guaranteed an early death. VCT projects that allied themselves to home care programmes found that with the availability of basic treatments and consequent longer survival, people became more hopeful and more willing to have an HIV test and act on advice about healthy living and prevention.

In Burkina Faso and India, community-based care and support focusing on orphans and vulnerable children (OVC) is supported by the Alliance’s LO in Burkina Faso, Initiative Privée et Communautaire contre le SIDA au Burkina Faso (IPC), and by the India HIV/AIDS Alliance. This work showed that infected children are not receiving the care and support they need. Treatment services for children are very limited due to lack of understanding of their needs and of clinical expertise.

The Horizons [see note, below] diagnostic study on the involvement of PLHA in the delivery of community-based prevention, care and support services in Burkina Faso, Ecuador, India and Zambia showed that people with HIV are not only passive recipients of services, but also that they have a valuable contribution to make in terms of planning and implementing these services. Although access to treatment is a prime concern for people with HIV, the study also found that this has to be accompanied by psycho-social support, provision of accurate information and training on such issues as positive living, support group formation and opportunities for involvement within NGOs and CBOs.

NOTE: Horizons is a global operations research programme designed to identify solutions to improve prevention, care and support programmes, and service delivery. Horizons is implemented by the Population Council under a co-operative agreement with the US Agency for International Development (USAID). Horizons partners are the Alliance (which co-ordinated the current study as part of this partnership), the International Centre for Research on Women (ICRW), the Programme for Appropriate Technology in Health (Path), Tulane University, Family Health International (FHI), and Johns Hopkins University.

1.2 Sharing experiences with others: developing a handbook
Assessing the needs

Mobilising NGOs, CBOs and PLHA Groups for Improving Access to HIV/AIDSRelated Treatment – A Handbook of Information, Tools and other Resources (the Handbook) was developed as a collaborative project of the World Health Organization – Department of Essential Drugs and Medicines Policy (WHO – EDM), the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Alliance. Building on its extensive experience with community-based participatory approaches and working with NGOs, CBOs and PLHA groups, the Alliance led the development of the Handbook with the support of WHO – EDM and UNAIDS.

As background research to developing this resource, the Alliance carried out needs assessments on access to HIV/AIDS-related treatment in India, Zambia and Côte d’Ivoire. These included participatory activities, questionnaires and interviews covering topics such as attitudes to treatment and availability of drugs, and involved a broad range of local stakeholders, including NGO staff and health care workers, as well as national leaders and international agencies.

The assessments were a challenge, requiring a blend of various appraisal techniques to find out what people knew about HIV/AIDS-related treatments, what they wanted from treatment services, what they thought constituted good practice in treatment, what role NGOs, CBOs and PLHA groups thought they should have and what their priorities were for getting involved with and sustaining treatment. The tools used in the assessments were published by the Alliance as a Facilitator’s Guide for Needs Assessment on Access to HIV/AIDS-Related Treatment.

Field testing the Handbook

The draft Handbook was field tested with NGOs, CBOs and PLHA groups through workshops in India, Zambia, Cambodia and the Philippines. The Alliance’s experience with these workshops showed that a participatory approach worked well by allowing people to share their knowledge and build on it through training inputs.

Through the process of field testing, what had been conceived originally as a simple toolkit on access to treatment evolved into a more comprehensive handbook designed to help NGOs, CBOs and PLHA groups make better decisions about improving access to treatment and address gaps. NGOs, CBOs and PLHA groups who had been delivering prevention and support services often became involved in treatment simply in response to demand – they saw a need and tried to meet it. Although some of the personnel involved had medical skills, they were faced with unfamiliar tasks when it came to sourcing and providing supplies of medicines. Communities and people with HIV also needed to improve their ‘treatment literacy’, developing a clearer understanding about medicines, what they can do and how they should be used, as well as how to improve access to them.

1.3 Summary of lessons learned on improving access to HIV/AIDS-related treatment
The experience of the Alliance and its partners has shown that improving access to treatment is about ensuring that treatment responses:
  • aim to reduce the stigma and discrimination that still persists around HIV/AIDS

  • occur within approaches of comprehensive care, linking to other HIV/AIDS efforts such as HIV prevention and psycho-social support. Responses should also be situated within a continuum of care, involving effective communication of information, support and resources between a range of sectors and people, including people with HIV, communities and government

  • are based upon appropriate attitudes, skills and behaviours of those providing and receiving treatment, and ensure an ethical approach to treatment

  • ensure the provision of accurate, up-to-date and accessible information

  • ensure available and accessible treatment and prevention services, and commodities; wherever possible integrating existing services so as to make the best use of scarce resources

  • actively involve people with HIV, their families, community members and leaders

  • are, where appropriate, adapted to the needs of specific populations, particularly those who are marginalised by society

  • have their foundations in the assessed needs of the community, organisation and policy environment

  • are based upon strong, strategic decisions by organisations, followed by careful monitoring and adaptation of their work.

The experience of the Alliance and its partners has shown that improving access to treatment also requires ensuring that treatment and prevention services, and commodities are better managed at all levels. This will mean:
  • guidance for choosing treatment and prevention strategies that are evidence-based and relevant to the people and communities who will take part, keeping patients, medical workers, families, and local communities central to the strategies and supporting them with sound policies and action from governments, nongovernmental or civil society groups and international organisations.

  • building and maintaining skills for managing procurement and supply of medicines and other commodities so that availability, accessibility and costeffectiveness are sustained.

  • building and maintaining skills for the networks of helping relationships that both support access to treatment and encourage its success, by keeping those who need treatment central to assessing, planning, implementing and evaluating the work that needs to be done. If this is achieved, good management is accepted as worthwhile and treatment or prevention planning focuses on realistic and achievable interventions.


Source: Improving access to HIV/AIDS-related treatment
This is an extract from Improving access to HIV/AIDS-related treatment, a report published by the International HIV/AIDS Alliance in June 2002.

To view the whole report follow this link.

To download the full report, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size 725kb).