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People living with HIV/AIDS need medical treatment as the infection progresses, but too often find that access to treatment is impeded by practical and attitudinal barriers. The Alliance is developing a toolkit to help NGOs and others understand and find ways to overcome these obstacles. As a first step, the Alliance has carried out assessments of the issues around access to treatment in Côte d’Ivoire, India and Zambia.

Many NGOs and community organisations have been caring for people living with HIV for some time. Although most Alliance partner organisations have initially focused on prevention, education and advocacy, many also help people with their social and psychological problems, and some also provide material help with food and other basic necessities. Comparatively few groups, however, have set up formal care services which include treatment, and many other groups are now seeing a need to do something in this area.

The Alliance and its linking organisations realise that complex issues arise for NGOs getting involved in care and treatment. It is often unclear what is possible, what works, and what is sustainable. Available resources are difficult to adapt for small groups without medical expertise.

In collaboration with WHO and UNAIDS, the Alliance is developing a toolkit to assist NGOs in addressing these questions. Many common themes emerged from the assessments of access to treatment issues, which the Alliance carried out in three countries. These included:

• ‘Treatment’ is more than medication: it includes access to food and other basics; basic care and healthy living at home; accessible health facilities; good attitudes from health workers; psychological, social and spiritual support.

• Barriers to treatment access can be practical: poor health services, lack of transport, lack of money.

• Stigma and discrimination resulting in the need for secrecy can also mean that services are denied or that people are afraid to ask for help for fear of being discriminated against.

• The high cost of many drugs used for HIV-related treatment puts them out of reach of anyone without sufficient income. In countries with high prevalence and poor economies, public health systems often cannot offer low-cost or free treatment to all who need it.

• However, much can be done to prevent illness and control symptoms using low-cost essential drugs and other remedies.

The need for groups new to this area of work to address issues of planning and management also emerged strongly from the assessments. For example, groups should learn how to assess the needs of a person living with HIV by taking into account their personal and social situation, how to identify and work with other organisations offering similar services, and how to respond to an increased demand for services.

The “Access to Treatment” toolkit is intended to address these issues in order to help groups considering whether and how to get involved in treatment and care, as well as groups newly involved in this area of work. It will also be useful for experienced groups, particularly for evaluating their work, and as a resource for training and skills-building with others. The toolkit will discuss what is required for the most basic treatment and care at home and in the community, what is needed to provide low-cost, low-tech clinical and other support and, finally, what is needed for high-tech treatment and monitoring of HIV infection and the treatment of other serious illnesses.

It will take a non-technical approach to exploring these issues and be written in jargon-free language. Case studies, work activities, practical tools and guidance will be provided and participatory methods will be suggested for such things as needs assessments, making links to other health services, and decision-making processes. Following several field tests, the toolkit will be available in 2001.

Home Care Project in Cambodia
Viewpoint: Khmer HIV/AIDS NGO Alliance (KHANA)

Home care is an essential part of the continuum of care and support. In resource poor settings, home care for people living with HIV and AIDS (PLHA) can contribute significantly to improving access to treatment. In 1999, KHANA, the Alliance’s linking organisation in Cambodia, started to provide technical and financial support to local NGOs in Phnom Penh that were involved in a pilot home care project for PLHA. Home Care Teams, which include both government nurses and NGO AIDS workers, provide home care to families living in the catchment areas of ten Health Centres. Together they form a Home Care Network, co-ordinated through the National Centre for HIV/AIDS, Dermatology and STDs (NCHADS). In the past year, KHANA has helped build the capacity of both the teams and the network, which now has a caseload of over 800 families. Cambodia's rapidly increasing HIV prevalence (approximately 3% to 5% of adults now have HIV) and the apparent success of this model has resulted in Home Care expansion becoming a National Strategic Plan priority. To help with this process and to assist KHANA in defining their role, the Alliance supported an evaluation of the two year service, which focused on impact, cost and key components for success.

Responses from the Community
Almost three quarters of PLHA reported that home care visits had improved their general well-being and physical health. Sixty-three percent felt that they had helped change their outlook on the future.

“Before the Home Care Team came, I spent too much money on medicines and hospital visits. Home care has changed my life: I can now look after myself and my child”, man, age 30.

It also increased community understanding of HIV/AIDS and made links between prevention and care. Forty-two percent of family members reported reduced discrimination as a result of home care visits. Community Leaders are the major source of referral and cases of family rejection have decreased dramatically.

“The neighbours, and even my own family, used to be afraid of my disease, but since education by the home care workers they are now more sympathetic with me. Some even come to visit me and bring me food”, woman, aged 34.

“People didn’t believe we had AIDS here. Now they are more brave in talking about condoms and using them. Before, their knowledge about AIDS was just from television. The Home Care Team have brought them the reality”, Village Headman.

Other benefits include savings in time and money, primarily from better use of health services, both traditional and modern.

“The Home Care Team help me to continue with my business of selling food; before they started visiting, I couldn’t even get out of bed. Without them my children would have to leave school to look after me”, widow, age 36.

The cost of the programme itself compares very favourably with other countries, and with other forms of health care in Cambodia. Sharing the scarce resources of both government and NGOs has enabled it to remain cost-effective despite increasing caseloads. One key component of the programme identified by the evaluation was the partnership between the various stakeholders. Copies of the evaluation report are available in English from KHANA and the Alliance secretariat.

Key findings from the access to treatment needs assessments
The needs assessents in three countries revealed the different barriers to access in different countries. Attempts to bridge the gaps also need to be different. This influenced recommendations on topics for the toolkits.

Côte d’Ivoire

• public health provision is available but seriously fragmented;

• health worker attitudes discourage people from returning for follow-up;

• many people cannot afford fees for using public health facilities;

• NGO and community groups are severely limited by poverty;

• donors refuse to support care activities because they involve recurring costs.

India

• misunderstanding and fear of HIV infection, in the medical community and generally;

• people feel they have to keep HIV infection secret so they don’t go for treatment;

• discriminatory attitudes of health workers are discouraging;

• drugs for all levels of treatment are available but people generally cannot afford them;

• people believe that if anti-retroviral drugs were accessible, HIV would not be a 'killer' disease and stigma would cease to be a problem.

Zambia

• general poverty and lack of money, food and transport;

• erosion of kinship structures, the growing numbers of orphans, continuing discrimination and denial associated with the high AIDS death rate;

• failure of the public health system and a long history of inadequate essential drug supplies.

Attempts to bridge the gaps
Côte d’Ivoire

• providing ‘user friendly’ services;

• funding and providing treatment through generating income by producing goods;

• funding and providing treatment by selling knowledge to research programmes;

• provision of referral networks and assistance with transportation.

India

• assisting people with access to diagnosis and treatment when their HIV status bars them from use of health facilities;

• acting as advocates and providing assistance with medical care, shelter and rehabilitation;

• some NGOs provide their own care services for easier access, lower cost and avoidance of unlicensed ‘quacks’.

Zambia

• assisting people to meet their basic needs by providing food from the World Food Programme and by distributing blankets, clothes, shoes, soap, etc.;

• developing NGO care systems, including home-based care, education and hospice or palliative care, supported by churches and other NGOs;

• producing and using effective local remedies for symptom control;

• organising bulk purchase schemes to obtain drugs at lower prices.

Outline of the toolkit

1. What are treatment, treatment access, the different types of treatment and care. Why would NGOs/CBOs start working in treatment and care?
2. Laying foundations for treatment and care: assessing needs, deciding what to do, managing money and people, dealing with change.
3. First steps in treatment and care: what are the basic elements, how are they delivered, how can NGOs/CBOs be involved?
4. Next steps in treatment and care: primary clinical diagnosis and care, how are they delivered, how can NGOs/CBOs be involved?
5. Full access to treatment and care: high-tech interventions, how are they delivered, how can NGOs/CBOs be involved?
6. Information and resources to support work in treatment and care.

News Update

Ecuador
Corporación Kimirina, the Alliance’s linking organisation in Ecuador, was officially launched as an independent NGO in early 2000. Kimirina, which takes over from the Initiatives Against AIDS Programme (previously based within COMUNIDEC) will provide NGO support on sexual health and HIV/AIDS. Margarita Quevedo has been appointed Executive Director of Kimirina.

Sri Lanka
After five years of successful partnership, the Board of Trustees of the International HIV/AIDS Alliance has taken the decision to end its support to Alliance Lanka, the Linking Organisation in Sri Lanka. Alliance Lanka has played a key role in responding to HIV/AIDS, but differences in views on strategy and operations between Alliance Lanka and the International Alliance have recently become evident. This, coupled with a number of staff resignations from Alliance Lanka, led to the decision to end support. We recognise the many accomplishments of Alliance Lanka and the contributions they have made to the response to HIV/AIDS in Sri Lanka and wish them well for the future.

Africa Regional Project
The Alliance is expanding its regional activities in Africa over the next two years. In partnership with other NGO support organisations working on AIDS in Africa, the Alliance hopes to work with NGOs in six highly-affected countries, focusing on the theme of reaching more people with quality activities on AIDS. New tools and resources are planned, such as a toolkit on support to NGOs.

Policy, Research and Good Practice Team
Over the last few months there have been structural and staff changes at the International Secretariat in London including the establishment of a new team on Policy, Research and Good Practice (PRGP). The team will consolidate and expand the Alliance’s work in areas including operations research, development of training tools and influencing the policy environment. PRGP is also responsible for tracking and promoting good practice in prevention, care and organisational development. The work will be carried out with a broad range of actors from within and outside the Alliance. The team, which is now complete, comprises: Sue Lucas (Co-ordinator); three programme officers, Nicky Davies (Organisational Development) Mandeep Dhaliwal (Care and Support) and Helen Parry (Prevention); Chris Castle (Horizons Project seconded from the International HIV/AIDS Alliance), Christophe Cornu (Project Officer, PLHA Operations Research), and Pam Decho (Project Assistant, PLHA Operations Research); James Togut, (Communications Officer), and Elaine Ireland, (Programme Assistant).

Supporters:

• Alliance Secretariat

USAID is funding a new Alliance programme in Ukraine to support NGOs and develop an information centre on STDs and HIV/AIDS; USAID, through the LIFE Initiative, has provided funding to support community level promotion of voluntary counselling and testing (VCT) in selected districts of Zambia; UNAIDS is funding the Asia Regional Programme to develop a training manual for men who have sex with men (MSM) and to implement other regional initiatives; the European Union is funding a project to enhance the delivery of care and support for PLHA in three states of southern India; Merck & Co., Inc. has committed funding for the development of a series of organisational development good practice tools; Comic Relief has granted money for an evaluation of the ANCS, Senegal, programme.

• Linking Organisations

ANCS, Senegal, acting as subcontractor to Family Health International, has secured five years of USAID funding; Grupo Pela Vidda/Rio de Janeiro and Grupo de Incentivo a Vida/São Paulo, the Alliance linking organisations in Brazil, recently secured additional funding for ongoing programme activities from DKT.

Publications and Resources

• “Building Partnerships: Sustaining and expanding community action on HIV/AIDS” A policy report synthesising the Alliance’s learning of partnership work is available in English from the Secretariat.

• “Care, Involvement and Action: Mobilising and Supporting Community Responses to HIV/AIDS Care and Support in Developing Countries” A report of lessons learned in care and support from the second year of the ‘Community Lessons, Global Learning’ project is available in English from the Secretariat.

• “Facilitators’ Guide for Needs Assessments on Access to HIV/AIDS Related Treatment” A practical resource used in the development of a toolkit on access to treatment is available in English from the secretariat.

The Alliance works with over 700 NGOs in 13 countries including Mongolia, Ukraine, Mexico and Brazil.

Alliance News

Volume 4 No 3, June 2000 (no 9)

• Access to Treatment