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3. Responding to HIV/AIDS: Prevention, care and people living with HIV
   Last updated: 29.06.02
 
As many individuals and institutions have learned during the past decade, HIV/AIDS prevention and care can, and should, inform each other. Indeed at community level, it is often hard to imagine continuing with prevention work without responding to care needs, or providing care which does not address the sexuality of people living with HIV and AIDS. Complementing this emphasis on linking prevention and care, there has been a broad political consensus since the 1994 Paris AIDS Summit that all HIV/AIDS programmes are strengthened through the greater involvement of people living with HIV/AIDS.

The country seminars of “Community Lessons, Global Learning” provided an opportunity for many groups to share their own experiences of strengthening their prevention work by addressing care needs and/or by involving people living with HIV. The success of FAES and its HIV prevention project with transvestites in Quevedo, Ecuador [described in more detail in section 7] springs from its own staff’s direct experience of the epidemic, and of living with HIV. For FAES, HIV is not an external threat or mystery virus; it is a lived reality, a daily challenge, an everyday emotion. The humanity of HIV and AIDS is an essential part of what FAES is and how it works. This humanity has enabled FAES to work from within its own community, a highly marginalised and oppressed group of transvestites, to reach a point where they “felt treated like human beings,” where HIV prevention meant something to them, where they were able to care about themselves as individuals and as a community.

A trainer from COMUNIDEC, the Alliance linking organisation in Ecuador, described the FAES project when she participated in the March 1998 country seminar in Bangladesh. COMUNIDEC has come to believe that the involvement of people living with HIV and AIDS has been a crucial component of their success at helping NGOs involved in prevention to move beyond awareness raising. As they say: “The care and support projects are the ones that have shown us the face of AIDS, the ones that have sensitised the prevention projects - and even COMUNIDEC. [These projects] have become the catalysts that place us in touch with the reality of the epidemic.”

However, the Alliance, like many others, is acutely aware that the experiences, expertise and example of people living with HIV and AIDS are usually absent from not only prevention, but also care programmes. Indeed, the continuing social exclusion and discrimination faced by those people living with the virus is one of the most disturbing aspects of the global epidemic, both hastening their illness and fuelling the silent spread of the epidemic.

In this context, the Alliance recognises the importance of creating safe spaces and supportive environments for people living with HIV and AIDS. In the Philippines, PHANSuP, the Alliance linking organisation, has supported Pinoy Plus, based in Metro Manila, to become the first Filipino self-help group for people living with HIV and AIDS, offering counselling, recreation facilities and income generation. An important focus of this work is secondary prevention - enabling the Pinoy Plus members to avoid behaviours which would risk transmitting the virus. This not only protects the health of others, but also reduces members’ own exposure to other infections including possible re-infection with HIV.

From this supportive foundation, Pinoy Plus members have become involved in HIV prevention activities in the wider community, advocacy with policy makers on the rights of people living with HIV and AIDS, networking with AIDS service organisations and welfare services as well as reaching out to other people living with HIV and AIDS, including those in other parts of the country. The importance of relieving isolation, building supportive networks and initiating collective action has also been recognised in Ecuador, where COMUNIDEC has supported the nascent Red Nacional de Personas Viviendo con el VIH/SIDA (National Network of People Living with HIV/AIDS) to build their skills in organisational development and strategic planning.

The country seminar in Senegal drew attention to another approach to working with people living with HIV/AIDS - involvement in the institutional processes of prevention planning and policy-making. ANCS, the linking organisation, has, from its inception, included people living with HIV and AIDS in its decision and policy-making structures - with three out of eleven seats on its Board reserved for them. ANCS has also stimulated a wider dialogue between those infected and directly affected by HIV and AIDS and others - by organising national fora and meetings to discuss policy and strategy. The National Forum on Care in November 1996 brought together for the first time people living with HIV/AIDS from all ten regions of Senegal with care-givers, community groups, public sector policy makers and health personnel, as well as national and international stakeholders. As Baba Goumbala, of ANCS, says: “ANCS has enabled people with HIV/AIDS ... to sit for the very first time on action committees alongside members of the government and leading NGOs .... facilitating a transfer of knowledge and encouraging collaboration.”

However, such dialogues, whether at local or national level, remain relatively rare. People living with HIV and AIDS continue to face stigma, discrimination and exclusion from the community, their sero-status often only compounding their existing marginalisation as a varying result of their poverty, sexuality or behaviour. In many, if not most, of the countries in which the Alliance works, people infected with HIV lack the protection of basic human rights. Some groups, like the Centre for Policy Alternatives supported by Alliance Lanka in Sri Lanka, are responding to this by sensitising opinion formers and policy makers to the ethical and human rights dimensions of the epidemic.

Case Study: Ensuring community care for people living with HIV and AIDS, L’AMMIE, Burkina Faso
Association pour l’Appui Moral, Matériel et Intellectuel à l’Enfant (AMMIE) was founded five years ago when health workers at the regional hospital in Ouahigouya, in the northwest part of Burkina Faso, grew frustrated with the growing number of preventable illnesses and emergency health visits among the local community. AMMIE decided to work in 10 of the 14 sectors surrounding Ouahigouya to provide primary health care including basic health promotion. Each sector contains approximately 5,000 people, and each was invited to elect a male and female ‘community agent’ (CA) to be trained, supported, and paid a small monthly honorarium to act as health visitors in villages. In 1994, the Alliance through the linking organisation IPC supported AMMIE to train their CAs to begin providing HIV/AIDS education as part of their visits.

At the December 1997 Burkina Faso country seminar, AMMIE described how it had received support from IPC to move beyond their initial HIV education activities into care, and the impact of this on their work. It was decided that the CAs should be trained in providing basic home care, conduct home visits, facilitate referral and transport to the doctor and/or local hospital when necessary, and otherwise providing immediate basic care. They now carry medical kits containing basic supplies including soap, alcohol, cotton, gloves, as well as some essential drugs like immodium for diarrhoea. The main problems they described were the high cost of basic drugs, transport for the CAs within the sectors, and poor HIV testing practices in the region.

“The volunteers at AMMIE were very eager to get involved with HIV care, because they encountered many people living with AIDS, and felt inadequate when all they could do was to provide information about how the virus is and isn’t spread”, explained Guiadoma Moré, IPC Programme Officer. “Adding HIV care both helped to respond to an immediate need, and increased the status and legitimacy of the health visitors”.

Discussion at the IPC country seminar and afterwards drew attention to the fact that while AMMIE had successfully shifted into a care role, it had not maximised all opportunities for prevention. For example, while CAs were including some syndromic STI diagnosis and treatment among their services, they were not carrying and promoting condoms nor offering family planning advice. These are now priorities for improvement.

Comment
“With this disease, the people who suffer most are the poorest. The majority of people with HIV have died because of their economic situation. NGOs are the ones based in the community. They know about HIV because many have learned through the experience of living with HIV. We mustn’t lose this experience. This country is very poor. If we don’t get together in groups and find help and medicines, we don’t stand a chance.”
Eduardo, a person living with HIV and a member of EUDES, an NGO supported by COMUNIDEC, Ecuador

Lessons learned and challenges for the future
Integrating HIV prevention programmes with strategies which address the exclusion experienced by people living with HIV and AIDS and attend to their care and support needs is a continuing challenge for the Alliance. Placing people at the centre of discussion of the epidemic makes it real, human, close.

Some of the most important insights to emerge from “Community Lessons, Global Learning” include:

  • Raising the voices of those with direct experience of the epidemic - especially people living with HIV - is both possible and valuable. Effective strategies include the creation of structures and processes which actively promote the involvement of people living with HIV and AIDS, as in the case of ANCS’ National Forum, and working with people living with HIV and AIDS to create safe spaces within which they can organise and from which they can articulate their voices, as in the Philippines and Ecuador.


  • Mixed or unclear objectives can lead to difficulties in relation to people living with HIV and AIDS organising and / or being involved. Solidarity, support, a desire to protect others from HIV, a need for income or access to care may all be important to people living with HIV and AIDS getting involved in AIDS organising. NGOs, NGO support programmes and donors may be seeking to improve the quality of care or prevention services, influence policy and public perceptions, or respond to political pressure. Open discussion of objectives and clear definitions of beneficiaries are essential.


  • We are not yet successfully measuring the contribution of people living with HIV and AIDS involvement to improved services. We need to improve our abilities in this area if we are to justify this strategy, as well as to learn which methods of people living with HIV and AIDS involvement make the most sense in particular circumstances.


  • In addition to creating safe spaces, we must continue efforts to counter the stigma and discrimination faced by people living with HIV and AIDS, and their carers. Promotion and defence of basic human rights must not only address the issue of HIV status, as in Sri Lanka, but must also attend to the correlated marginalisation and oppression experienced by many people living with HIV and AIDS, whether as a result of sexuality, gender, ethnicity, religious faith and/or socio-economic class.


  • Implied within this human rights work is a recognition of the commonality and diversity of issues faced by people living with HIV and AIDS, their unity and their heterogeneity. Acknowledging that there are many faces of HIV means working with people living with HIV and AIDS as people and not as embodiments of a hidden virus; people whose unique experience, and not simply their HIV status, will inform their work in HIV prevention. We also must learn much more about people living with HIV and AIDS who do not get involved, or who do not access services. How do we respect people’s choices while ensuring that they have access to what they need?


  • Expanding voluntary HIV testing and counselling services is not just a prevention intervention for the individuals involved. It may help to engender a dialogue within communities about how they can live with the epidemic. The emergence of people living with HIV and AIDS groups and the involvement of people living with HIV and AIDS in other NGOs is consistently linked to the availability of testing, but this also creates many demands for increased NGO capacity, especially in relation to counselling and the personal ability of staff to cope with the multiple issues faced by many people living with HIV and AIDS.


Source: Beyond Awareness Raising
This is an extract from Beyond Awareness Raising: Community lessons about improving responses to HIV/AIDS, published by the International HIV/AIDS
Alliance in 1998.

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