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close this bookVoices from Africa - Issue No. 10 - NGO Responses to HIV/AIDS (NGLS, 2001, 121 p.)
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UN NON-GOVERNMENTAL LIAISON SERVICE

NGLS

The financial contribution of the Joint United Nations Programme on HIV/AIDS (UNAIDS) toward this publication is gratefully acknowledged.

The findings, interpretations and views expressed in this publication are entirely those of the authors and do not necessarily reflect official policy or positions of their organizations, the United Nations Non-Governmental Liaison Service (NGLS), UNAIDS or any other part of the United Nations system.

The designations used do not imply the expression of any opinion whatsoever on the part of NGLS, UNAIDS or any part of the United Nations system concerning the legal status of any country, area or territory or its authorities, or concerning the delimitation of its frontiers.

UNCTAD/NGLS/185

Co-editors: Jo-Anne Velin and Adrienne Cruz
Cover design: Andrea Marconi
(kindly supplied by North-South Media Encounter, Geneva)
Layout: Suroor Alikhan

Published in May 2001 by:
United Nations Non-Governmental Liaison Service (NGLS)
Palais des Nations, CH-1211 Geneva 10, Switzerland
United Nations, Room DC1-1106, New York NY 10017, United States

Introduction

AIDS has become a global crisis that threatens to reverse a generation of accomplishments in human development. And AIDS has fundamentally threatened human security. More than exclusively a health crisis, today AIDS is an emergency that affects many areas at once: health, development, the economy, education and humanitarian work.

Reducing HIV transmission, achieving good care standards, and helping to alleviate the impact of the epidemic have become possible and affordable.

But for every success story, there are far too many countries where urgently needed prevention and care have been blunted by denial, social stigma, insufficient resources, and a lack of political will. Pushing back the epidemic’s spread continues to require inspired leadership.

That leadership has come from government officials, religious leaders and international celebrities, as well as from the courageous battles of everyday people: the workers, students, activists and elders whose leadership is essential if change is to be achieved.

Yet leadership efforts will only succeed if sufficient resources are set aside to guarantee basic survival and future development. It is difficult for leaders to lead when economies are being devastated, if people are being forced to compromise their health and well-being to survive, or if government offices, education systems and organizations of civil society lose staff to the disease as quickly as they are trained. For leadership to work, the proper conditions must be created.

This presupposes collaboration at a new, more intense level, notably through mechanisms such as the International Partnership against AIDS in Africa. This coalition was born of the understanding that, in isolation, none of its constituencies - neither governments, nor civil society, nor the various national and international organizations working against AIDS in Africa - will succeed in turning the epidemic around. Instead, a coalition or partnership approach promises to magnify the contribution of all partners, while giving a clear leadership role to African governments.

Civil society in Africa plays a pivotal role in this partnership and in the broader response to AIDS. For years and in many countries on the continent, governments’ inability to tackle HIV - whether through lack of resources or commitment - has prompted NGOs to step in and take up the provision of HIV and AIDS services. This edition of Voices From Africa is replete with such examples. They range from the experiences of small local groups to the programmes and projects of international networks, made up of Africans from all regions who work on a daily basis with those infected or affected by HIV. They paint with their testimonies a poignant picture of the harsh battles they wage in everyday life - whether fighting ignorance and stigma, searching for scarce resources, or seeking support and commitment beyond their own. Without these and thousands of similar groups, the battle against AIDS would surely be a losing one.

NGLS has been publishing its Voices From Africa series for the best part of a decade now. Written entirely by African activists, practitioners and professionals, the series is designed to provide an opportunity for Africans to share their work, concerns, ideas and views with an international readership and help shape a more positive and balanced picture of African realities. This, the tenth in the series, focuses on the theme of HIV/AIDS in Africa and has been prepared to be made available for the Special Session of the UN General Assembly on AIDS in New York in June 2001. In providing an opportunity for African AIDS activists to share their experience, we very much hope that this edition of Voices From Africa, brought to life by close collaboration between the Joint United Nations Programme on HIV/AIDS (UNAIDS) and NGLS, will provide inspiration and hope, and contribute to strengthening the response to the HIV/AIDS epidemic in Africa and elsewhere.

Peter Piot
Executive Director
UNAIDS

Tony Hill
Coordinator
NGLS

May 2001

Authors

Ang Zo Angono is a social worker with SIDA Service in Senegal.

Catherine Campbell is a Reader in Social Psychology at the London School of Economics, and Co-Investigator of the Carletonville-Mothusimpilo Project in South Africa.

Thebisa Chaava is with the Salvation Army in Zambia.

Moses Chingono is with the National Employment Council for the Transport Operating Industry (NECTOI) in Zimbabwe.

Patricia Diam is a social worker at Centre de Promotion de la Santn Senegal.

Daouda Diouf works at Environnement, Dloppement et Action (ENDA) in Senegal.

Anne Fiedler is with the Straight Talk Foundation, based in Uganda.

Janet Frohlich is Project Director for the Vaccine Preparedness Study at the Medical Research Council based in South Africa.

Keith Goddard is Programmes Manager of the organization Gays and Lesbians of Zimbabwe (GALZ).

Eleanor Gouws is Principal Investigator for the Vaccine Preparedness Study, and Senior Statistician at the Medical Research Council based in South Africa.

Moustapha Gueye is Director of the African Council of AIDS Service Organizations (AfriCASO) in Senegal.

Milly Katana is Project Manager of the Network of People Living with HIV/AIDS (NAP+) in Uganda, and Board Member of the Global Network of People Living with HIV (GNP+).

Catherine MacPhail is a Social Scientist at the Centre for Scientific and Industrial Research, and is associated with the Carletonville-Mothusimpilo Project in South Africa.

Adriano Rostino Matsinhe is President of Kindlimuka, an association of people living with AIDS in Mozambique,

Sophia Mukasa Monico is Chief Executive Officer of The AIDS Support Organisation (TASO) in Uganda.

Salimata Niang is with the Society for Women and AIDS in Africa, based in Senegal.

Sam L.J. Page is with African Farmers’ Organic Research and Training, based in Zimbabwe.

Marie Rose Sawadogo is Executive Director of the Private and Community-based HIV/AIDS Control Initiative in Burkina Faso.

Brian Williams is Principal Investigator of the Carletonville-Mothusimpilo Project, and Divisional Fellow at the Centre for Scientific and Industrial Research based in South Africa.

Other contributors include:

Regina Clement Akpan is Project Manager of the Life Link Organisation, based in Nigeria.

Esther Guzha is Chief Counsellor at The Centre, a Zimbabwean AIDS Service Organisation.

Samuel Lijalem Hassan is Information Management Officer at the Christian Development Relief Association (CRDA) in Ethiopia.

Aristide Kacou is Project Coordinator of Lumi Action, based in Cd’Ivoire.

Victor Kamanga is National Coordinator of the Malawi Network of People Living with HIV/AIDS (MANET+).

Leiliane M’Boa is General Secretary of Lumi Action in Cd’Ivoire, and Secretary of the West African Section of the Rau Africain de Personnes vivant avec le VIH (RAP+).

Dora Ofobrukweta is Project Manager of the Life Link Organisation in Nigeria.

Mariette Wandandi is founder of the People Affected by HIV/AIDS Organization (PAHO), based in the Democratic Republic of Congo.

Private and Community-Based HIV/AIDS Approaches in Burkina Faso, by Marie Rose Sawadogo

The first recognized cases of AIDS were declared in 1986 in Burkina Faso, and since then the virus has continued to spread. The country’s population is vulnerable to HIV/AIDS because of poverty, high internal and external migration, weak health services, low levels of school enrolment, and certain traditional practices and beliefs regarding women. Burkina Faso is the third most affected country in West Africa with an adult prevalence rate of 6.5%, and there is no sign the epidemic has stopped its spread. The impact of HIV/AIDS is increasingly visible in all sectors of society and in the daily life of each citizen.

Initial response to HIV/AIDS in the country came essentially from the government, which set up a national control programme to tackle the epidemic in 1987, with development partners readily providing assistance. Civil society was slower in responding, and the first AIDS control associations came into being only in the early 1990s.

One of these earlier groups is the Private and Community-based HIV/AIDS Control Initiative (IPC), set up in December 1994 under the legal responsibility of Plan International as a liaison agency for the London-based International Alliance Against HIV/AIDS. The IPC is now an autonomous NGO in Burkina Faso.

A cornerstone of its work was a campaign in 1996 to raise public awareness about HIV/AIDS. Early awareness efforts in the country had centred on information, education and communications (IEC) campaigns. While providing those involved with practical experience about the impact of AIDS campaigns on the general public, this approach was considered inadequate in bringing about changes in attitudes and behaviour.

Experiences and data collected to date in the country show that more men (94%) than women (84%) have heard of HIV/AIDS. The level of knowledge - whether accurate or not - is high but varies with socio-economic status, and especially location and education. Given this information and the fact that levels of behaviour change have been low, the IPC adopted an approach to prevention based on gradually changing behaviour through participative, peer-directed discussion groups in communities.

Constraints and Lessons Learned

Although it is difficult to evaluate the actual impact of associations working on HIV/AIDS issues in Burkina Faso, a number of lessons have been learned. Sustained investment in associations and additional financial resources are needed to consolidate them and broaden responses to the disease. New approaches have helped improve participation in activities and boost capacity building and self-confidence, although a new strategy for providing technical support in the field is required. Other needs include developing “relay associations” to increase responses to HIV/AIDS; building the training capacity of NGOs; improving administrative procedures; instigating leadership training sessions; intensifying resource mobilization efforts; improving impact evaluations; increasing the profile of AIDS and of people living with the disease; and better sharing of experiences among community-based associations and organizations to improve skills and involve a community’s leading actors.

Partnerships Against AIDS

In Burkina Faso attitudes toward HIV/AIDS seem to be marked by greater acceptance and openness; an increasing number of initiatives to fight the disease have also been launched.

HIV/AIDS must be fought by a broad front, and everyone in society has a stake in halting its spread. It is the role of the government to design and implement AIDS control programmes, coordinate all actors engaged in HIV/AIDS control and mobilize the forces required, disseminate information, and to facilitate access to drugs. In Burkina Faso, a decentralized multi-sector response in the Gaoua district has proved so successful that it is being extended to the rest of the country.

Given the scale of the challenge posed by coordination of the national response, and in the interests of an appropriate community response, NGOs are important actors in this national effort to strengthen the partnership for AIDS control. Consequently, mobilization and deep community involvement are essential if society is to prove capable of tackling the disease. NGOs are legally recognized in Burkina Faso and all have signed an agreement with the government. IPC believes that the closer the link between association members and the communities they target, the greater their ability will be to identify needs and appropriate responses. Since NGOs are far less cumbersome administrative structures than the state, they can act swiftly and produce immediate results, which enhances their credibility and effectiveness.

People living with HIV/AIDS (PWAs) are crucial to prevention efforts. Their visible presence and participation are important factors in providing care and changing attitudes toward the disease. One IPC-funded group, REVS+ (Responsibility-Hope-Solidarity with Seropositive People), is managed by PWAs who provide support in a number of areas. These include psychosocial services, home or hospital visits to patients, self-help initiatives, counselling, and advocacy for rights.

In Burkina Faso there is a tradition of communal action to combat a variety of afflictions such as desertification or drought, and the community sector has developed enormously in recent years. This may be attributed to the numerous training programmes and local technical support available, as well as to increased participation and mobilization by women. Being a woman is frequently synonymous with a low level of education, weak purchasing power, a dependent position within the couple, and a limited ability to impose herself. Through increased participation in HIV/AIDS prevention activities, women in the country have been successful in designing and preparing projects, as well as in trying innovative methods of community leadership. New approaches, such as group discussions, have been received with enthusiasm and have helped enhance the status of women in their communities. Thanks to peer group discussions, many women have been able to discuss issues about sexuality with their partners. For the first time, in these groups they have had the opportunity to handle condoms for men, and to voice their apprehension about using condoms during sexual relations with their husbands. Currently women make up about 60% of the membership of most associations in the country and contribute to both theory and decision making. And whether in women’s associations or mixed groups, they often occupy positions of responsibility.

Finally, the high media profile adopted by IPC and other associations has helped sensitize communities to the importance of HIV/AIDS through numerous television, radio and press interviews.

The main hurdle to active participation by association members is the voluntary nature of the work. Few people have the financial means to undertake such work, and most members are unemployed. In addition, the failure of donors to provide institutional support to community-based organizations and the lack of access to funds, materials, and technical and human resources poses many problems. IPC is calling for institutional support to such associations and for a re-examination of the notion of “volunteer” in poor countries, where most of the population is destitute.

Preventing HIV/AIDS in Morocco, by Issam Moussaoui

It is hard to describe or to analyze the situation of the HIV/AIDS epidemic in Morocco. Certainly experience helps us to provide a better description, but the more one becomes involved in this epidemic, the more one realizes how complex it is. We shall endeavour to provide a chronological description in order to illustrate what the response has been in Morocco, before reaching some conclusions and observations on key issues regarding the epidemic’s evolution in the country.

The HIV/AIDS Situation in Morocco

According to the classification established by UNAIDS, prevalence of the disease in Morocco is low, but the risk is unfortunately high. A total of 834 AIDS cases were declared by 30 September 2000. There are not yet any official figures for seroprevalence, although the introduction of sentinel surveillance has made it possible to extrapolate information from target populations. HIV prevalence is 0.16% among carriers of sexually transmitted infections (STI), 0.15% among pregnant women, 0.14% among tuberculosis patients, and 0.02% among blood donors.

Why is Morocco considered to be a high-risk country? Factors include the high level of STIs among the general population. While the official declared figure is 214,000 new cases of STIs each year, the actual figure may be closer to 600,000 cases. This discrepancy is attributable to, among other things, under-reporting and use of traditional treatments and self-medication. Other factors include trends in prostitution and migration, both rural-urban within Morocco and to other countries such as France, Spain and Italy.

The first case of AIDS in Morocco was registered in 1985. One year later, the National AIDS Control Programme (PNLS) was established. Initial actions were limited to providing information by organizing lectures on World AIDS Day and distributing leaflets and posters.

Civil society at large in Morocco was not long in reacting, and an association specialized in AIDS control - the Moroccan AIDS Control Association (ALCS) - was founded in 1988. This was the first initiative of its kind in North Africa and indeed in the Arab world. ALCS now has some ten sections throughout Morocco. In the wake of this initiative other associations came into being, particularly after the International Conference on AIDS in Africa held in Marrakech in 1993. These groups focus on specific interventions, with priority given to populations such as prisoners and commercial sex workers.

Given the close links between STIs and AIDS, in 1995 the National AIDS Control Programme launched an anthropological study into sexually transmitted infections. The study led to the adoption and implementation of syndromic case management of STIs. This approach, adapted to suit the situation in Morocco, was implemented throughout the country by the end of 2000. In late 2001, an in-depth analysis of both the situation and the response will culminate with the elaboration of a national strategy on STI and AIDS.

Findings

Epidemiological Data

Analysis of figures shows that 90% of HIV cases in the country are found in urban areas and major towns and targetted interventions are possible. This information, while important, must be put into context. Screening is not systematic in Morocco and not everyone has access to it, especially in rural areas where inhabitants must travel to towns for facilities when they can afford to.

In view of the Moroccan context as an Arab and Muslim country, many issues connected with the epidemic and sexuality in general are taboo. As a result these subjects cannot be openly discussed in schools or within the family. This limits the use of media, especially audiovisual resources, in raising public awareness about HIV/AIDS. Teaching aids are restricted to posters, leaflets and brochures; their impact is confirmed to those who can read, but the literacy rate in Morocco is only 40%. In addition, regional differences such as language have not been taken into account in the production of support materials.

Characteristics of the Epidemic in Morocco

About 70% of HIV cases are spread through heterosexual transmission, a high percentage when compared to the 600,000 new STI cases believed to occur in Morocco each year. Clearly, this figure requires a close look at the cultural and social environment surrounding AIDS if issues relating to sexuality and STIs are to be discussed.

The epidemic in Morocco increasingly tends to affect women; the proportion of women with HIV/AIDS compared to men rose from 16% in 1990 to 38% in 2000. This will worsen the situation of many women, given their already limited decision-making ability and lack of access to services and care.

In 1990, foreigners - tourists and immigrants - accounted for a significant number of HIV and AIDS cases in Morocco. By 2000, all declared cases were indigenous.

Social Factors and Phenomena

Because a thorough analysis of the impact of AIDS is difficult, we shall limit ourselves to examining a number of key indicators. Migration has played both a positive and a negative role in the spread of HIV. The economic impact of AIDS has fuelled external migration, and has contributed to changing lifestyles and social norms.

Prostitution in the country has become more widespread; in many cases this has been due to economic factors, although in others it may be attributable to changes in lifestyle. A change in lifestyle is particularly evident in major cities such as Casablanca, Agadir and Marrakech, where most female prostitutes are compelled to take up prostitution because of poverty. According to one sex worker interviewed in a bar in Mekn “If I had an alternative, I would give this up because there’s no respect for me.”

Sexual relations between men have always existed in Moroccan society, but are never discussed openly because they are banned by Islam and the national Constitution. Such practices are now becoming more open, especially in major cities.

The Role of NGOs

As mentioned earlier, civil society mobilized rapidly to join the fight against AIDS. In addition to their many activities on the ground, associations have played a significant role in both advocacy and in behavioural change. Two examples of this are triple therapy drugs and the preventive approach.

Morocco is considered a low-prevalence country and is hence not a priority for donors. As a result, most AIDS activity until 1997 was limited to prevention. In 1998, ALCS successfully advocated for the introduction of antiretroviral drug therapy in Morocco. As a result, costs were reduced by 40%. Mobilization of the private sector also led to contributions by health insurance companies to lower drug costs.

In terms of prevention, the early AIDS response focused on providing information and considered AIDS strictly a health issue. To move the fight against AIDS forward, the Association Marocaine de Solidaritt de Dloppement (AMSED) shifted the battle from raising awareness to promoting behavioural change, while positioning the response into a wider socio-economic context. AMSED’s approach has now been adopted by others and is reflected in projects elaborated by the Ministry of National Education to integrate sexual education into the national school curriculum and into literacy courses. Peer education has now been adopted in Morocco.

As NGOs develop their know-how, they will take on an increasingly important role in developing effective interventions. Non-governmental organizations are active in Morocco’s United Nations Theme Group on HIV/AIDS, and with the PNLS in the committee directing situation analysis and response. However, it should be stressed that greater efforts are required to coordinate the work of different associations, which should become possible as they develop and reach maturity.

The AMSED Approach

The Association Marocaine de Solidaritt de Dloppement is a non-profit group whose aim is to assist poor people through support and self-development projects in the fields of literacy and basic education, health and environment, and microcredit.

A major programme was developed to assist the associative sector with STI/AIDS control, in partnership with the London-based International Alliance against HIV/AIDS. The programme is designed to control AIDS by providing support for groups active in the field of HIV/AIDS control. It has two objectives:

· to provide Moroccan associations with technical assistance that will help them strengthen their organizational capacity and with financial support to identify needs and implement AIDS projects that have a development dimension; and

· to promote communications and the exchange of experiences among the programme’s member associations regarding the various approaches for AIDS control.

To address the social and economic dimensions of the disease, the Programme d’Appui du Secteur Associatif (PASA) pour la Lutte contre les IST/SIDA plans to integrate prevention into development projects for vulnerable populations. Initially, groups involved in AIDS control have been invited to establish contacts with the target population in order to identify their main needs and potential.

Mobilizing and involving the population facilitates the work of associations that focus on changing attitudes and behaviour. Since 1996 when the programme began, AMSED has supported some 30 associations and funded some 60 six-month projects throughout Morocco. PASA has also developed training modules to promote interventions by associations on such topics as techniques for data collection, and data analysis, participative prevention, building partnerships in the area of AIDS, peer education, and participative evaluation.

Clearly NGOs working on the issue of AIDS in Morocco are still in their infancy, but they are quickly gaining strength and influence. In all spheres of HIV/AIDS work in the country, their presence is visible and their impact is felt. Working hand in hand with the government, these groups can help broaden the response to the disease and make sure that prevention measures help keep HIV/AIDS figures low in the country.

Human Rights: Living with AIDS in Mozambique, by Adriano Rostino Matsinhe

“When I left the place I felt I had nothing to live for. For me it was the end of everything. I could not just walk back home. I wandered around and slept on the streets unable to believe that I was still alive.”

This was the reaction of one young Mozambican woman after learning that she was HIV-positive. Her testimony is one of the stories that Kindlimuka, a Mozambican association of people living with HIV/AIDS (PWA) and their sympathizers, has compiled into an upcoming book entitled Human Rights and People Living with HIV/AIDS in Mozambique.

Kindlimuka, the first group of its kind in the country, was founded in 1996 and officially recognized in 1998. Today it has some 150 members, of whom the great majority are HIV-positive. The association strives to reduce the stigmatization of people living with HIV/AIDS by breaking the silence and speaking openly of the illness. It encourages other groups of PWAs to seek official status for their associations with the aim of establishing at least one association for each province in the country.

Kindlimuka’s initiative of publishing a book of this kind is a major step toward the elaboration of a national policy for the protection of the rights of PWAs. Mozambican society has not yet come to terms with the epidemic’s presence. Employment, social relations, friends, and first and foremost human dignity, are all at stake once the name of the illness has been pronounced aloud: “AIDS.” Despite numerous awareness campaigns, no person living with HIV/AIDS can avoid the stigma associated with the disease. The book draws heavily on the Universal Declaration of Human Rights, and Kindlimuka wants its voice to be heard among those of political leaders, members of civil society, and last but not least people living with HIV/AIDS.

Following are some excerpts of individual testimonies presented in Human Rights and People Living with HIV/AIDS in Mozambique.

Employment

This is the experience of Ana Maria, a 29-year old single mother. Ana Maria completed the ninth grade under the old education system and used to work in a firm that we prefer not to identify.

“I used to be a secretary at [name withheld],” she said. “Then in 1997 I caught tuberculosis and was admitted to Machava General Hospital. When I was discharged, the firm told me to wait because I couldn‘t work on account of my critical state. About four months later I caught cerebral malaria. I went back to the hospital where they gave me a certificate stating that I could start work. In 1999,1 had a relapse, and it was then that the firm found out that I was HIV-positive. My relations with my work mates weren‘t good. It‘s all the personnel manager’s fault.... When I took my social security certificates to the board for reimbursement he refused to give me the money, so here I am, living from hand to mouth.”

However, the insensitivity of some employers is not reflected only in their indifference and laziness. Ana Maria continues her story.

“At work they had given me only Mt 50,000, which wasn’t even enough to pay for everything on the prescriptions. It was my family that helped me to pay for the drugs.”

She was lucky because her colleagues didn’t discriminate against her.

“My work mates were unaware of the situation, they were just suspicious. The only ones to know were the firm’s general manager, the personnel manager and the head of administration.”

As is probably the case in many firms, it was the most educated and highest ranking people who discriminated most.

“Yes, the personnel manager discriminated against me most because he found out about my illness when I was in hospital in Mavalane. I got my certificates from the board and took them to work, but he didn’t pass them on to the social security. When I found out, I went to the social security myself, and they began paying benefits to my employer; however, when my employers received the benefit they stuck on the receipts with-out paying me the money. They never told me anything. The last time I chased them up about it, they just paid me Mt 50,000, which is about six days’ benefit.”

* * * * *

Augusto is a young man who found out that he was HIV-positive before he started work.

“I started work in 1999. They asked me what my level of education was, and said that the job was for people who had some skill or who had completed at least one year’s schooling. I provided the personnel department with certificates, which they accepted, and I started work. I worked from September to November. In December I started to feel very ill. When I went to explain why I was absent from work, with the prescriptions and certificates from the hospital where I was treated, they said that my absences weren’t justified. They asked me what was really the matter with me, and I said I had malaria and persistent diarrhoea”

Augusto’s supervisor had no hesitation in declaring that he was unfit for work, even though he had no idea about what was the matter with him.

“I was like that for the whole of December. In January the pain continued, I went to work for two or three days, then I felt ill again so my supervisor sent a note to personnel telling them that I was unfit for work.”

So Augusto had no choice but to reveal what was the matter with him; however, instead of getting help, he was fired.

“Finally, personnel called to find out what was really the matter with me. I told them straight, I hid nothing and said that I had been found HIV-positive. They told me to stay at home, that I couldn‘t go on working until my health problem had been solved. I was worried. Didn‘t they realize that there is no way to change the results of the analysis? I got in touch with other unions. OTM [the Mozambican Workers Union] told me to stay at home too, so here I am, without a job.”

Diagnosing HIV

Holinda, a woman from Manjacaze, recounts her experience.

“I felt very poorly for a whole year in 1997. I really was ill. I was in the internal medicine department for ten days. Then they gave me a certificate for the outpatients’ department at the hospital. That was in December 1998. I left the department and went home. I still wasn’t feeling well. I stayed at home for a few days and then went back to the hospital in January 1999. When I showed them the note, the nurse gave me some advice on the HIV virus and then they gave me my test results. For three days I felt really terrible thinking about it, but then someone took me to the Kindlimuka association where I met other people with the same problem who supported me; I felt normal, just like other people.”

In this case the patient was neither counselled, nor was her consent obtained for the test.

* * * * *

Take the case of this young 22-year old who prefers to remain anonymous. When we asked her how she found out that she was seropositive, here’s what she said.

“It was in September 1999. I was in Maputo Central Hospital. I had malaria. The nurse sent me to the outpatient clinic. She asked me if I knew what I was in hospital for. I said I had no idea. She sent me back to the Central Hospital to get the results of my malaria test. The nurse gave me the results on a folded sheet of paper, telling me to take it to the day clinic. I handed the piece of paper to the nurse. She opened it and asked me: Do you know what the result is? When I said I didn‘t, she said: Well, you’ve got AIDS.”

Access to Treatment

Another experience is that of a 32-year old mother of three, Maria Luisa Macuacua from Maputo.

“I had a problem with a constant discharge that wouldn‘t stop. It took me a lot of effort to solve the problem, but fortunately after six months I managed. It’s not easy to get to see a doctor, because of the nurses. When they find out that you’re seropositive, [it is as though you are] worthless [and] different from someone with tuberculosis for example, who can get to see a doctor. We seropositives don‘t have that right, I don‘t know how to explain it. Perhaps someone else could explain, but I was at my wits’ end. However, when you do get to see the doctor, you‘re properly treated. For example, I went to his clinic today, and I was well treated. I was given cotrimoxazole, aluminum dioxide, vitamins and other medicines.”

When she was asked if she took the full treatment, she said:

“Not always; I had financial problems that prevented me from buying the drugs.”

Women

Women’s inferior status to men puts them in a vulnerable position. Not only are they unable to persuade their partner to use a condom, but they cannot even ask about his other relationships. This puts women at higher risk of being exposed to sexually transmitted infections. The next case is typical of this kind of situation. The narrator is a widow, Cristina, who has five children. Her husband died from AIDS. When we asked how long she had known she was seropositive, she said:

“I hadn’t taken a test, but I agreed to after my husband had been ill in hospital for a long time, and they told me he had HIV/AIDS. So I agreed to take the test because he had spent almost all his life with me. I had never been with another man, all my children have the same father. I had no idea my husband died from the disease. Of course, now I’ve got it because my husband [and I] had never thought to use a condom because we had nothing to worry about; we were together for many years and had all our children, some of whom are now married, and we never suspected each other. Besides, we had never heard of it. We never went to the STI [sexually transmitted infections] clinic at the hospital. We realized that the disease is there, but you don‘t only catch it through sex, there are other ways of picking it up, so I’m not criticizing my late husband; he may have caught it in some other way, without going with other women. Anyway now I’ve got it too, because we slept together and had our children.”

Community

The experience of Ana Carlota Mendoza tells us about discrimination in the community.

“I think the community found out about it from my neighbour, who worked in the same firm. I suppose the personnel manager was careless, he let the workers find out, and as one of my neighbours worked there he went and told the other neighbours.”

Naturally, Ana Carlota was very upset when she found out.

“I was shocked because when I found out I began to realize that my neighbours, my friends, those closest to me when I was in hospital scorned me. When I passed by, people who were selling things would spit or turn away when they saw me coming. I felt alone, because even when they came to visit me at home they always said they had heard that I had AIDS, and asked if it was true. They would ask how my family could live with me in such circumstances. Fortunately, my mother quickly came to terms with the problem and I stayed with her. I greeted those who returned my greeting, and ignored those who didn‘t, and carried on taking my treatment.”

Ana Carlota says she did receive visits from her neighbours.

“They came out of curiosity, they asked me whether I really had AIDS, how I was able to eat and to walk. Only my friends were truly supportive; they encouraged me, nourished my hope and kept up my morale.”

* * * * *

Ana da Lutia Sia is a widow. She too told us her story describing the situation in her family and the way she was treated by her community.

“I had a husband, but we couldn‘t live together. We fell in love, but he fled to South Africa, leaving me with two children. He lived in his house and I lived in my aunt’s house. We had our two children while we were in love, before he went away. Now I work in a woman’s house as a domestic helper so that I can bring up my children, although it is hard to find the money for everything, but at least they more or less eat.”

She tells us how her family found out about her situation.

“They found out, but I didn‘t tell them. I was ill, and I went to the hospital with my son. It was the doctor who told my family that I was very ill. When I felt better I went home and my family started saying nasty things about me. They said that I had asked for it because I had been messing around; they even said that I was lucky that they had put up with me until I came out of hospital. I don‘t even visit my aunts; the others say that if want to go to their house I’ve got to wash my spoon, my plate and my mat if I don’t want to give them the disease. Now I’ve rented a house where I live with my children. I can’t live with anyone now because they say nasty things about me. I couldn’t even eat or sleep because I could hear my family talking about me. As my mother doesn‘t live here, but in Gaza, I was living with my aunt. But then my uncle stopped liking me so I rented a house where I live with my children. My neighbours don‘t know about me, only my aunt‘s neighbours do. They even said nasty things to my aunt. I don‘t ever go there any more, I just stay here in my house.”

Ana da Lutia has the following message for families in which someone has HIV/AIDS.

“My message for families in which there is someone in my situation is that they mustn‘t treat them badly because they didn’t want to fall ill and no one even knows how or when they caught it. They just caught it, like any other illness, and people should think about how they treat them because one day they could fall ill themselves, so if they treat them badly it hurts them as it hurts me. They might not even have the barest minimum to live, like me, although at least I’ve managed to rent a house where I live with my children. How would anyone like to be treated like that in the same circumstances? Where would they be able to live? Wouldn‘t they have to live in the street? It’s not right. I’d just like to go to Kindlimuka, and perhaps to live with other people in my situation and forget everything else. I can’t sleep at night. When I go home I can’t stand this life, not because I don‘t have anything to eat - it’s life itself I can’t stand.”

Income-Generating Activities: An Experiment in Senegal, by Patricia Diam and Angèle Zo Angono

In Senegal when the first cases of AIDS appeared, the social and cultural context made it taboo to mention the disease. Infected women and men were singled out, judged and even rejected because it was immediately assumed they led promiscuous sex lives. Infected persons were seen as a burden for their families because they were frequently ill. Caring for them meant buying expensive drugs and feeding them, which meant providing a special diet. Faced with low wages and a high cost of living, it often became impossible for heads of household to cope. When com-pounded by ignorance, this meant the person living with HIV/AIDS was often rejected.

According to SIDA Service, an agency of the Catholic Church in Senegal, people living with HIV/AIDS are entitled, like all sick persons, to proper support from the community and to respect and understanding based on a sense of generosity. SIDA Service offers a permanent structure for consultation, training and action. It is the result of a common desire among officials of the Association of Private Catholic Health Posts in Senegal (APSPCS) and Catholic schools of the church to offer a response to the desires expressed by young people. The rapid spread of AIDS represents a dual challenge to all, and the church desires to shoulder its part of the burden: prevention of the disease and assistance to those affected by it.

When people announce that they are seropositive, many are rejected by their family, while others lose the will to live and may sink into alcoholism or drug use. Providing support and assistance for people living with HIV/AIDS means receiving and interviewing them, listening attentively, visiting them at home and in hospital, and providing medical care (for opportunistic infections) and food.

SIDA Service has been involved in AIDS support and care activities since 1994. Living conditions for people with AIDS are often very poor, and their social and financial situation precarious. For this reason SIDA Service has developed a series of income-generating activities in Dakar to help people become financially independent for food and medicines, and to help support their families by paying for such things as their children’s education.

Activities for support are selected by a team made up of a physician, a social worker and a nun. They are chosen on the basis of clearly defined criteria. The applicant must be a person living with HIV, the project must be feasible, and the person’s clinical condition must be satisfactory. Certain social criteria also apply, including whether the person is destitute or able to reimburse.

Successful applicants receive three days’ management training because most have no idea how to manage funds. The training is designed to enable beneficiaries to better manage income-generating activities. It also provides some management tools including registering and replacing stock, maintaining cash book and weekly sales records, understanding the concept of minimum stock level, and conducting inventory. It also introduces the notion of profit to help recipients calculate their potential earnings and handle accounts. After the training course activities begin, a social worker is assigned to supervise a project all the way from purchase activities to final sale.

After two months of operation, each recipient is required to reimburse half the funds he or she borrowed, with a 10% levy on profits, until the amount has been reimbursed in full.

The range of income-generating activities (IGAs) is broad and growing. Between 1996 and 2001, SIDA Service received about 50 requests to finance IGAs. A total of 24 applications covering 30 beneficiaries were funded including four drinks stalls, four textile businesses, one local food store, one fish product concern, three tailors, one cosmetics shop, one pearls and incense trader, and one handmade doll shop.

With the funds they earn from these activities, some people living with AIDS manage to support their family, while others can afford to pay for antiretroviral drugs. Some who had been cast out by their families have been able to return. We have even seen instances in which the family itself became involved in the IGA with a brother, sister or spouse running the shop or business if the beneficiary has a medical appointment. This is a positive spin-off.

All is not always simple, however, and while 16 activities may be meeting with success, another four are facing problems due to poor management and illness. Those running them are no longer reimbursing their loans, although the activity is still operating. They are able to renew their working capital, but are unable to save. The activity has to cover all their families’ expenditures, which is a heavy burden.

Funding remains inadequate for most IGAs, and as a result stock levels are too low and it takes a long time to begin operating at a profit. When the IGAs find themselves in dire straits, their operators come back to us. When SIDA Service carries out an evaluation, it may inject fresh capital into a project to give the activity new life.

There have been three deaths among the beneficiaries, and in one other case the activity was run by two drug addicts who took a free course of withdrawal treatment offered by SIDA Service. Their activity did not get off the ground because they lacked experience in the poultry business, and the death rate among their chicks was high. In addition, one of their drug-dealer acquaintances continued to provide them with drugs.

A number of other challenges have been faced by the beneficiaries. For example, some have experienced problems with bookkeeping because many are illiterate. For others, health problems may affect the way they run their activities. They may also lack sales experience, such as knowledge of how to change the products on sale depending on the season. They may siphon off profits for day-to-day family expenditures. In addition, supervisors may face difficulties in obtaining documents to justify some of the purchases they make, as well as difficulties justifying items of expenditure, such as phone calls.

Because of the increased vulnerability of women, more funds have been provided to them (66.7%) than to men (33.3%). It is women who go to hospital to care for either their husband or child. If their husband dies, women are responsible for children; but they also have to look after themselves if they are shunned by society. In fact, many of them may have been infected by their husband. In Dakar, children infected with or affected by HIV/AIDS form another vulnerable group because they lack adequate schooling, nutrition or medical treatment.

Providing people with the means to earn a living has been a positive experience, evaluations show. People living with HIV or AIDS have found renewed hope and have been welcomed back into their families. They have started to become financially independent and to look after themselves. However, in order to achieve satisfactory results, the activities have to be carefully chosen and a sound programme of follow-up and evaluation established. Ensuring the sustainability of these IGAs is an important factor in improving autonomy.

The Media in Senegal: A Decisive Role, by Daouda Diouf

In order to describe the relationship between the media, NGOs and AIDS, it is worthwhile to describe the socio-cultural environment in Senegal. In the country there is a deep associative tradition that has given birth to several groups and associations (for young people, community development, sporting and cultural associations, women’s groups, religious associations, and so on). They pursue a number of activities to improve social and living conditions among various population groups. In the different districts, villages and towns, sports and cultural associations offer young men and women opportunities for leisure and competitive activities. Community development associations also engage in environmental conservation activities such as sanitation, reforestation, or the development of groups with a common economic interest to help young people cope with under-employment. This can be through trade, handicrafts, education, fishing and other activities. Alongside these women’s organizations, also known as groups for the advancement of women, have taken initiatives to organize the development of firms run by women in sectors such as trade, agriculture, vocational training, literacy and processing locally-produced cereals. Such organizations also exist in the religious and social spheres, with the emergence of dahiras. These are grassroots organizations of the various Muslim fellowships in Senegal, which are also active in building community facilities such as hospitals, dispensaries and social centres.

Frontline Communities

HIV/AIDS is present in households and communities in the form of an epidemic that spreads by way of society’s economic, political and interpersonal malfunctions. Its impact exacerbates deprivation and problems, when it is not directly responsible for them, and has rapidly led to a vigorous response from local communities and their organizations.

Home-Grown Responses Rooted in Local Culture

Alongside the strategies of politicians and physicians, a multifaceted and multidimensional response has come into being and is developing through the efforts of the different elements of civil society (NGOs, young peoples’ associations, Muslim or Christian fellowships). As a result, NGOs that operate with associations and grassroots community groups such as Environnement, Dloppement et Action (ENDA) have adopted information and mobilization programmes for prevention and advocacy in an effort to influence policies and decisions, assist and sup-port affected individuals and families, and build up community capacity (training and equipping grassroots leaders and actors) at both local and national levels. Muslim associations and NGOs such as JAMRA, or Catholic ones such as SIDA Services, were quick to commit themselves to the effort. The only free anonymous HIV screening service in Dakar was set up by SIDA Services, which like JAMRA runs HIV/AIDS information and prevention programmes.

The Role of the Media

In order to put the prevention message across, broaden the scope of programmes and reach a wider population, the community sector rapidly made use of the media. It used both traditional channels of communication as well as modern ones including the press, radio and television. One example is the multimedia campaign entitled Paths to Prevention, a programme run by ENDA and its associative partners in various countries in West Africa. The vehicle for this campaign was a lorry-mounted studio/stage for presenting concerts, community plays and a variety of artistic events on dimensions of HIV/AIDS. These were also relayed as live radio broadcasts to a wider audience in villages, towns and neighbouring countries, helping to improve knowledge of HIV/AIDS among rural and poor urban populations. The activities of the studio/stage lorry and the radio broadcasts involved primary and secondary schools and is rightly considered to be one of the factors responsible for the introduction of the subject of preventing sexually transmitted infections (STI) and AIDS into Senegal’s school curriculum. ENDA was also responsible for coordination and the technical content of 12 broadcasts in Africa on AIDS, in partnership with Radio France Internationale (RFI). Each broadcast was subsequently reproduced on a videocassette, and hundreds of copies were then distributed to grassroots groups as tools to promote prevention.

In collaboration with Senegalese Radio and Television, private radio stations and local newspapers, several broadcasts and reports have been produced about community prevention campaigns. The reports have provided infected or affected persons with an opportunity to express them-selves and testify about their situation. This exercise generated enormous media interest about issues related to the epidemic. Social mobilization efforts against AIDS (World AIDS Day, National Women and AIDS Day and Youth Against AIDS Week) and the different workshops, symposiums and forums organized by NGOs and the government have all been given broad coverage by the media.

Two years ago a private radio station entitled FM Santspecializing in broadcasting health information, was launched. The AIDS pandemic occupies an important place in its programme schedule.

The availability of video footage and stocks on HIV/AIDS from ENDA has enabled media professionals to produce well-researched programmes for better impact. The media have also played a decisive role in providing support for advocacy to bring about policy changes and lobby decision makers. Two examples include the European tour by the Mur des Communaut which was an opportunity for associations to show the wealth and diversity of responses to the epidemic in the South. Its purpose was to correct the distorted impression in the North that people in developing countries are passively accepting spread of the disease. Another example was a joint action by NGOs and the media in Senegal to persuade government authorities to provide and promote access to antiretroviral treatment. Partly as a result of this effort, for the last three years the government of Senegal has included in its budget approximately CFAF 300 million for antiretroviral treatments. In addition, efforts have been made to persuade medical services to become more specialized in order to provide better case management for people living with HIV/AIDS.

Constraints and Challenges

Unfortunately, the passion aroused by AIDS has prompted some media specialists to treat the issue with sensationalism and factual distortion. This has undermined the integrity and dignity of affected individuals and communities. A report broadcast by national television a few years ago in Senegal portrayed a person living with HIV as living proof of the disease’s existence, rather than emphasizing his courage and the exemplary value of his testimony. The person’s identity was not concealed in the programme, and he later suffered as a result.

In addition, a poor understanding and a superficial interpretation of the facts and figures related to the epidemic in the country (such as the relatively low prevalence rate in Senegal) have encouraged a false sense of security among the population. This has resulted in a relaxation of preventive behaviour. In addition people tend to underestimate their own vulnerability to the disease. For this reason we need to re-examine the kind of relationship that is desirable between the media and NGOs concerning this issue. This relationship should be based on partnership, information exchange and mutual understanding of interests and concerns.

Naturally the commitment of the press and audiovisual media to airing the views of community organizations and NGOs, together with the professional support of specialized journalists who are continually informed of new developments affecting the pandemic, are vital to successfully pass on our message about HIV/AIDS prevention. This is also important for channeling the community sector’s support to political decision makers, donors, pharmaceutical firms and influencing public opinion.

However, it needs to be recognized that NGOs and other associations in Senegal have not yet developed an operational media strategy such as internal communications, media relations, and development of an NGO-media network in order to make available up-to-date information that will interest not only journalists but their readers, listeners and viewers.

Conclusion

Whenever it has managed to operate, the alliance between NGOs and the media in this country has served as a watchtower against the epidemic’s progression and has had a positive influence on decision making, helping to promote more suitable response mechanisms. Thanks to their training and awareness, media professionals are able to appreciate their catalytic role in bringing about the changes in individual, collective and political behaviour that are required to address challenges such as AIDS.

Lessons From the Front: NGOs and the Fight Against HIV/AIDS in South Africa, by Brian Williams, Eleanor Gouws, Janet Frohlich, Catherine Campbell and Catherine MacPhail

More than a decade after HIV became established in South Africa’s general population, the unity of purpose and commitment needed to limit and reverse the spread of infection is still lacking. Social leaders and “celebrities” are, with some notable exceptions such as Judge Edwin Cameron, unwilling to admit they are infected with HIV. The government argues for the importance of taking a broad view of the social contexts of the epidemic by embracing poverty, inequality and the legacy of Apartheid. Some large corporations are considering the consequences of the epidemic, but their attitude to it remains ambivalent. Echoing the history of the struggle against Apartheid, responsibility for dealing with HIV/AIDS is falling increasingly on society’s NGO sector.

South Africa has experienced successive epidemic waves of HIV/AIDS. The first was among gay men in the early 1980s, followed by infection among haemophiliacs through contaminated imported blood,1 then among the heterosexual population, and now in babies of infected mothers.2 Today about five million people are infected in the country. As the epidemic matures, up to one million people a year may die. By 2010 one million children will probably be orphaned by AIDS, and many of them will become feral children.

South Africa during the 1990s provided fertile ground for the spread of HIV. The epidemic became firmly entrenched as the social unrest and civil disorder that marked the dying years of Apartheid came to an end and Nelson Mandela was released from prison. Sexually transmitted infections (STIs) were barely managed in the black population, and the migrant labour system was still firmly in place. The advent of freedom of movement after the collapse of Apartheid meant that people, and so also diseases, could move about as never before. Given infection rates in neighbouring countries, it was inevitable that South Africa would be badly affected by the epidemic.

In 1994 there were an estimated 55,000 registered NGOs in South Africa.3 Foreign donors were needed to provide support for education, health and other social services not provided by the Apartheid government. NGOs specifically concerned with HIV/AIDS began to emerge in the late 1980s, and by 1997 more than 600 organizations were directly involved in HIV/AIDS. They developed educational programmes, provided care and counselling services, and created lobby groups calling for changes in legislation and arguing for the rights of people living with AIDS. To coordinate these efforts the National AIDS Convention of South Africa (NACOSA) was formed in 1990 to bring together government, the private sector, trade unions, political groups, AIDS activists and NGOs. They would work together to define principles and determine strategies for intervention.4 NACOSA was also given a mandate to develop a National AIDS Plan.

NGOs generally support a community-based approach to the epidemic that acknowledges the social determinants and broader implications of HIV in prevention, care and support interventions. The Treatment Action Campaign has vigorously campaigned for access to treatment, including interventions to prevent vertical transmission of HIV. NGOs generally work with disadvantaged communities that are particularly vulnerable and susceptible to HIV, and are able to bring a sense of community ownership to a programme. They do this by employing community-based educators and carers and by establishing local reference groups or committees. They can create partnerships with the community, which can then determine the direction and nature of the project and influence the allocation and distribution of resources.

The NGO sector has achieved impressive results in many areas. By providing education and prevention programmes, community care and support, and advocacy and lobbying, they have helped inject a vision of non-discrimination, human rights and community participation into the national planning process.5 This work has been complemented by many community-based organizations (CBOs) including workplace groups and churches. Two community-based projects are examined below. One is in Hlabisa, a rural district in northern KwaZulu-Natal, which is the largest of South Africa’s nine provinces. The other is in Carletonville, a major industrial centre in Gauteng. It is about 700 kilometers from Hlabisa, but linked to it by men who live in Hlabisa and migrate to Carletonville to work in the mines.

The Hlabisa Project

Hlabisa covers about 3,000 square kilometres and is home to some 215,000 predominantly Zulu-speaking people. Homesteads are widely scattered and people depend on subsistence farming, migrant labour and pensions. Hlabisa has a well-developed health service including a 430-bed hospital, 13 fixed primary health care clinics and a mobile clinic service. The South African Medical Research Council (MRC) has conducted research in the area since the early 1990s, and this has led to substantial improvements in community health care. In 1991 community-based, directly observed therapy (DOTS) was introduced6 using volunteers and community health workers who now manage 90% of tuberculosis patients.

The community of Hlabisa has benefited from research into community-based health care provision, but the epidemic continues unabated. Among women attending antenatal clinics in Hlabisa for the first time, HIV prevalence increased from 4.2% in 1992 to 14% in 19957 and 34% in 1999.8 Over the same period, incidence among these women increased from 2.3% to 10% a year.9 Hlabisa has been identified as a potential site for prevention and vaccine trials, which should bring further benefits to the community.

There are many problems associated with working in rural areas such as Hlabisa. The homesteads in rural Zulu communities are widely scattered, and few people live in towns or villages. The hilly topography makes access very difficult, and roads are often poor or non-existent. The economy of South Africa is intimately bound up with what has come to be called circular migration, in which rural men and some women seek work in urban and industrial areas but retain the rural home to which they will eventually retire. At any one time more than 50% of adult men and up to 20% of adult women may be working outside the district in places as far away as Carletonville.10 A recent study of migration between Hlabisa and Carletonville11 shows that HIV prevalence is higher among migrant men (28%) than non-migrant men (14%) but that in HIV-discordant couples the woman is as likely as the man to be the single infected partner. While migration increases the likelihood that men will be infected when away from their wives, it also increases the likelihood that wives will be infected while their husbands are away.

Rural society is highly complex and involves a range of cultural norms including attitudes toward polygamy, the importance of traditional forms of governance, and low levels of education. As a result of this diversity, scientists working on HIV/AIDS and related health issues in Hlabisa have developed good communications with the community. A community meeting was eventually hosted by the Inkosi (Chief) and his Izinduna (Counsellors) in Hlabisa in 1997. A Community Advisory Board (CAB) was also elected by the community to promote partnership among researchers, research participants and community members.12 Community educators, appointed by the CAB, were employed to raise awareness of HIV/AIDS among young people, encourage appropriate STI treatment-seeking behaviour, provide support for people living with HIV, prepare the community for participation in vaccine trials, and inform the community of research findings. Programmes for home-based and paediatric AIDS care were also introduced. In this way it has been possible to bridge the gap between the community and research workers and ensure that the rights and dignity of the community are protected.

The Carletonville Project

This project has been given the name Mothusimpilo, or “working-together-for-health.”13 It was set up to develop a sustainable community-based intervention and evaluate the impact on behaviour, sexually transmitted diseases and HIV in Carletonville, the biggest gold mining complex in the world. About 70,000 migrant mine workers, drawn from rural areas in South Africa and neighbouring countries, live in single sex hostels without their wives or families. In addition about 200,000 people live in the historically white town of Carletonville, the historically black township of Khutsong, and several smaller settlements in the area. The intervention was initially targeted at mine workers and sex workers since it was felt that they were at highest risk.

The intervention has two main aims: first, to ensure that all health services in the area - public, private and mine-based - provide state-of-the-art syndromic management of STIs while working closely with traditional healers; second, to develop effective and sustainable community-based peer education and condom distribution. Periodic presumptive treatment for women at high risk was subsequently added.

Efforts were also made to ensure that the main stakeholders were involved in the design, management and implementation of the project. In addition to the locally-based Carletonville AIDS Committee, these included the national and provincial departments of health, mine management and unions, various research organizations, and the principal donors. In this case these were the UK Department for International Development and the United States Agency for International Development.

A detailed series of evaluations was undertaken. Annual surveys are carried out in which blood and urine is tested for syphilis, gonorrhoea, chlamydia, HSV-2 and HIV. A detailed questionnaire covering a wide range of social, demographic, economic, biomedical and social issues is also administered.14

Unexpectedly, the first survey found extraordinarily high levels of HIV among young people, especially women, in the general population of Carletonville; about 50% of 24-year-old women were infected with HIV in 1998. The number is now closer to 70%. This dramatic and depressing finding led to a substantial change in the direction of the project, with much greater emphasis being placed on adolescents.

In many areas the project has been very successful. Women at high risk in what are locally known as hotspots (informal settlements close to mine shafts where alcohol and sex may be obtained) have developed an active and very effective programme of peer education. This has been extended to women at high risk living in Khutsong. Peer education among mine workers has been less successful, partly because the industry is unwilling to allow men time off work to be trained. Some of the schools in the area are developing their own AIDS programmes with the support of project staff. There is also an effective home-based care project running in Khutsong, but it remains short of funds and support.

HIV/AIDS in South Africa remains stigmatized, and many of the associated risk factors and problems including curable STIs, migration, poverty and gender violence are not adequately addressed. In spite of the evidence many senior political, business and other leaders either refuse to acknowledge the impact that HIV/AIDS will have on society, or if they do, believe that their particular sector will weather the storm. At the same time extensive donor funding is available for HIV/AIDS programmes, interventions and research, International foundations, governments and drug companies have already committed up to one billion US dollars.

Many NGOs have achieved striking results with limited resources, but an epidemic of this scale cannot be effectively managed by NGOs. Rather, their role should be to provide links among communities, scientists, finding agencies and government. NGOs can explore and develop new ideas and new ways of dealing with the epidemic, and they will inevitably form a key component of a successful national strategy. However, without the support of others the good work that NGOs are doing will not be sufficient to turn the tide of the epidemic.

Notes

1. Sher, R. (1986). “Acquired immunodeficiency syndrome (AIDS) in the RSA” in South African Medical Journal [supplement] 70: 23-26.

2. Taylor, V. (1998). HIV/AIDS and Human Development: South Africa. United Nations Development Programme: Geneva.

3. Schaay, N. (1997). “The History and Development of NGO-Based HIV/AIDS Work in South Africa” in The South African STD/HIV/AIDS Review: Situational Analysis, Volume 4, Appendix 21, compiled by Janet Frohlich. Medical Research Council: Durban.

4. Crewe, M. (1996). “The National AIDS Plan, Research and Collaboration” in HIV/AIDS Management in South Africa: Priorities for the Mining Industry, editors Brian Williams and Catherine Campbell. ERU: Johannesburg.

5. Schneider, H. and Stein, S. (1997). “Contextual Issues Affecting Implementation of the NACOSA/National AIDS Plan” in The South African STD/HIV/AIDS Review: Contextual Analysis, Volume 3, Appendix 17, compiled by Janet Frohlich. Medical Research Council: Durban.

6. Wilkinson, D. (1999). “Eight Years of Tuberculosis Research in Hlabisa - What Have We Learned?” in South African Medical Journal, 89:155-159.

7. Coleman, R.L. and Wilkinson, D. (1997). “Increasing HIV Prevalence in a Rural District of South Africa” in Journal of Acquired Immune Deficiency Syndrome Retrovirology, 16:50-53.

8. Gouws, E., Frohlich, J., Abdool Karim, Q. and Abdool Karim, S.S. (2000). “Preparing for Phase III HIV Vaccine Trials: Experiences From Rural South Africa,” presented at the 13th International AIDS Conference in Durban in 2000. UNAIDS: Geneva.

9. Williams, B.G., Gouws, E., Wilkinson, D. and Abdool Karim, S.S. (2001). “Estimating HIV Incidence Rates From Age-Specific Prevalence Data In Epidemic Situations” in Statistics in Medicine, Volume 20 (in press).

10. Medical Research Council Household Survey, 1997.

11. Lurie, M., Williams, B., Sturm, A.W., Garnett, G., Mkaya, D. and Abdool Karim, S.S. (2000). “HIV Discordance Among Migrant And Non-Migrant Couples in South Africa,” presented at the 13th International AIDS Conference in Durban in 2000. UNAIDS: Geneva.

12. Frohlich, J. (2000). “Mobilising Communities for Participation in Vaccine Research and Development,” presented at the 13th International AIDS Conference in Durban in 2000. UNAIDS: Geneva.

13. Further information from website (www.csir.co.za/aidsproject).

14. Williams, B.G., Gilgen, D., Campbell, C.M., Taljaard, D. and MacPhail, C. (2000). The Natural History of HIV/AIDS in South Africa: A Biomedical and Social Survey in Carletonville. Centre for Scientific and Industrial Research: Johannesburg.

Further Stigmatization, Discrimination and Denial in Uganda, by Sophia Mukasa Monico

In 1997-1998, the AIDS Support Organisation (TASO) carried out a six-month study to establish the forms and determinants of stigmatization, discrimination and denial with reference to HIV/AIDS. The study took place in two districts of Uganda: urban Kampala and rural Mbarara, where TASO had been active for some time. While the findings are not a comprehensive representation of the situation in the country as a whole, there are some conclusions that can be drawn from this rapid assessment. These should help influence policy makers and highlight the need to carry out a more in-depth study into what is known as discrimination, stigmatization and denial (DSD). The findings of the study, which relied more on anecdotal representation rather than statistics, are summarized below.

TASO is one of the first community responses to the HIV/AIDS epidemic in Uganda. It was launched in 1986 as a self-interest driven initiative of 16 people infected or directly affected by HIV/AIDS. It has grown into one of the biggest internationally-recognized organizations in the provision of prevention and care to people living with the disease and their immediate families. It does this by forming partnerships with people living with HIV/AIDS (PWAs) and by empowering communities to handle their own HIV/AIDS issues.

The epidemic in Uganda is not new, and a Demographic Health Survey in 1997 determined that 97% of Ugandans knew about it. In spite of this high recognition, there remain significant pockets of DSD, making DSD an epidemic in its own right, contained within the HIV/AIDS epidemic.

There are many definitions of DSD but it is generally determined by the social dynamics of each community and influenced by, among other things, the stage of the epidemic; the level of knowledge about HIV/AIDS; accessibility to HIV/AIDS care and prevention services; cultural dynamics such as women’s vulnerability to sexual abuse and infringement of their rights; and the response to the epidemic. DSD is also influenced by levels of education, which in turn often influence income. In fact, people with less education often appear more supportive and accepting of PWAs than people belonging to highly educated, white-collar upper income groups. Finally, standards of care are a factor. Often, patients falling ill can no longer take care of themselves and must be cared for by children, in many cases of the opposite sex.

In both regions it was observed that the highest form of stigma was self-stigma rather than community stigma. Whereas community stigma was very high at the beginning of the epidemic, this gradually decreased, especially in circles affected directly by HIV/AIDS. In the late 1980s, some people living with the disease who were registered with TASO testified that parents and especially in-laws aware of their HIV status had evicted them from home. Often this was due to ignorance, with people fearing such things as witchcraft and infection.

By the time the study was carried out, those initially shunned had been accepted again and welcomed into their families. Families were more supportive, especially where additional resources were forthcoming. Community members at large were no longer awed or even overly surprised to hear or see someone with AIDS-related symptoms. Employers, though still lacking understanding, became more tolerant of sick employees. In some cases, strong positive reactions from the government and communities intervened to curtail discriminatory practices such as mandatory testing for employment.

The Roots of Stigma

The stigma surrounding HIV/AIDS is brought about by a number of factors, particularly shame. Until recently, in most cases HIV/AIDS was predominantly associated with sex. Early prevention messages connected the disease to promiscuity. Even though promiscuity was most often not at the root of infection, people were ashamed of being associated with the disease, both individually and at the family level. Likewise AIDS has been associated with marginalized groups or groups looked down upon by society.

Fear is another factor influencing stigma and has often been fueled by ignorance. For many, witchcraft - the unknown malevolent superpower thought to cause the terrible unexplained disease that eats away at the person - lay behind the epidemic. HIV/AIDS in Uganda is called “slim” and for many, the very appearance of this symptom was enough to send people scurrying in shame.

Fear of losing employment has also been a factor. Due to the long and intermittent nature of the disease, companies have not been willing to support people living with HIV/AIDS. This is rapidly changing, as it has been widely demonstrated - especially by AIDS service organizations such as TASO - that a person can live a purposeful life for a significant period with HIV/AIDS.

Women in particular have faced the fear of being thrown out of their homes. In most cases their partners found out about the existence of the disease in the family through their children, when babies fell ill and died. Again, because of the misinformation circulating about AIDS, the woman was considered the culprit.

Culturally, promiscuity is accepted on the part of the male partner but not for women. Therefore, a woman who shows signs of infection first or through an ill baby is believed to have brought HIV/AIDS into the family. This is tantamount to a social crime.

People have also feared that by closely associating with a PWA they would also get infected. This fear is decreasing as communities in Uganda begin to realize that this is not true. Stigma, for one reason or another, was noted in the study as one of the major determinants of discrimination.

It is strongly believed and empirically supported that Uganda’s enormous response to the HIV/AIDS epidemic, characterized by the country’s openness and strong community responses, has played a significant role in demystifying HIV/AIDS. This has consequently led to diminished denial and has contributed to the decrease in levels of stigmatization, and hence of shame and fear. This in turn has led to less discrimination.

Evidence of the above is embedded in the fact that people now openly seek HIV/AIDS services in specialized organizations such as TASO. Having said this, it has to be recognized that despite the unique comprehensive and quality services provided by AIDS service organizations, only the most economically desperate seek them out. This is because such organizations do not offer confidentiality in the strictest sense. Since these organizations provide services only to HIV-positive people, the simple act of walking through the door is tantamount to declaring one’s seropositive status to all and sundry. Therefore services of these organizations are only sought by those ready to compromise, or to share, their confidentiality.

Those who can afford services elsewhere, in most cases through medical treatment, often do not take advantage of specialized HIV/AIDS facilities such as counseling, which are not often available through regular health facilities. If they can afford medical care, wealthier people prefer to keep their HIV status confidential for fear of shame, stigma or discrimination. Hence while the poor community of Uganda is facing a decrease in denial, stigma and discrimination and is seeking support concerning HIV/AIDS, the same cannot be said of the country’s elite.

This brings imbalances in the response and reactions from both the service provider and recipient’s point of view. From a care point of view, failure to seek services by the country’s wealthier population has led to a high level of denial. This in turn has resulted in a poorer quality of life, especially psychologically. From a prevention point of view, Uganda’s wealthy have failed to access available information, or if they do their level of denial inhibits them from transforming their knowledge into action that might help them avoid contracting or transmitting HIV.

It has been suggested that one of the reasons DSD still exists despite human and financial investments in the response to AIDS is that this response has been driven largely by a highly committed community that has already made a significant difference. However, members of this community do not have enough power to influence issues that affect the root causes of the epidemic’s spread. Hence the impact has been superficial and individually-based rather than deep-seated and structurally based.

With timely and continued care and support - a combination of medical treatment, counseling and social support - most people can cope with the burden of the disease. They also manage to share their HIV status relatively easily, which helps them feel their burden is lightened. They have told us that they believe the sharing of confidentiality with those closest to them has improved their quality of life. Some have used this new self-confidence to support others in seeking appropriate care, as well as to sensitize their communities through their own testimonies. For example, they have formed drama groups to creatively raise care and prevention awareness in different communities. This has gone a long way to “lifting the veil” of silence from people who are infected and from the epidemic itself. It has also greatly contributed to restoring hope and improving the lives of persons and communities infected and affected by HIV/AIDS.

The AIDS epidemic in Uganda has changed over the years. A Ministry of Health surveillance report for 2000 reported that infection rates had fallen from an estimated 24% in 1990 to 8.5%-9% by the end of 2000. Antenatal clinics, the major surveillance points, reported a halving of the percentage of pregnant women found to be HIV-positive. The biggest age group reporting a significant decline in HIV infection were those aged between 15 and 24. Much of this is attributed to abstinence and faithfulness, but intensive social marketing of condoms and wide-spread distribution suggest that condoms are also frequently used.

It is believed that support services for people living with HIV have contributed to demystifying the epidemic, which has led to more people seeking services. This could not have been achieved if the government had not created an enabling environment for NGOs, who are the main providers of AIDS services.

The government’s openness to the epidemic broadened avenues for communities to address AIDS. The high community response - result-oriented, target-specific, very direct and reaching the grassroots, and in close collaboration with the government’s decentralized system - has turned HIV/AIDS into a common topic of conversation. Widespread and constructive advertisements by the government and NGOs contain highly practical guidelines and have helped transform a judgmental attitude into a more supportive one. Church groups also are making a significant contribution to fighting the epidemic. The enormity of AIDS cannot be handled by governments alone. The need for broad partnerships and the inclusion of even more partners is crucial.

Congregational Breakdown and HIV/AIDS Among Rural Zambia’s Salvation Army, by Thebisa Chaava

In 1994 a young girl in my church in Zambia went to a church counsellor for help about a relationship with a young man in the same church. The boy was treating her like his wife, she said. The counsellor casually asked the boy to stop this behaviour, but a few months later the tearful girl returned and told the counsellor that she was pregnant.

The counsellor was well-placed to be consulted about issues of personal choice, and as in many other cases the opportunity was not utilized. The problem centres around assumptions and discomfort of discussing sexual matters with young people.

In September 1999 at a church leaders’ consultation in Gaborone, facilitated by Cafod, Norwegian Church Aid and the Salvation Army, African church leaders admitted there was much more the church could do to contribute to preventing HIV/AIDS and caring for those living with the virus.

Many church leaders at the consultation acknowledged that they had been reserved in their response and had treated HIV/AIDS primarily as a health issue. They only became involved during funerals, at which point HIV/AIDS was not even mentioned. They agreed that the way church meetings were being conducted did not reflect the impact of the epidemic. Neither did youth meetings and women’s meetings. Most church responses to HIV/AIDS have come from church hospitals and other social institutions, with little or no response from local congregations made up of ordinary men and women.

Congregations themselves have only rarely responded to the epidemic. Women in congregations have continued to organize bridal showers that prepare women for marriage without reference to HIV/AIDS. When someone is sick and misses church services, the church leader and church members are expected to visit but without making any reference to HIV/AIDS. When death occurs, church members are often required to prepare the bodies of fellow church members for burial, as funeral parlours are uncommon in the rural areas. Church members carry the coffin on their shoulders to the burial site and keep night vigils to comfort bereaved families, often without acknowledging the epidemic that lies behind the increasing sickness and death in communities.

In rural Zambia the church represents a strong community structure for decision making and problem solving. Nearly everyone is associated with a church or has been to a church at least once in their lifetime for a wedding, Christmas or Easter celebration, or the funeral of a loved one. In many rural communities there are only two communal buildings: a school and a church. Church leaders themselves are often also community leaders, and all churches have weekly meetings on Saturdays or Sundays, with membership ranging from 50 to 500 people. It is in these congregations that the impact of the epidemic is felt the most.

Deep reflections on the meaning of the epidemic for congregations are now taking place at all levels of church organization. The Salvation Army, a church with both social institutions and congregations, was one of the first to respond to the epidemic in Zambia by setting up home-based care for people living with HIV/AIDS and community counselling, initially from its hospital in rural Zambia. These strategies have since spread to many other communities around the world.

In Africa, the Salvation Army has set up regional and national teams in 12 countries to mobilize an effective response both from its institutions and congregations. In Uganda every Salvation Army congregation has an income-generating activity to support widows and orphans. These activities include selling charcoal and dried fish. The profits are used to provide sick church members with hospital transport; they also go toward school fees for orphans. This lead has been followed by Salvation Army congregations in other African countries. Today, home visiting teams for counselling and other types of support to HIV/AIDS-affected families are becoming part of church life.

Salvation Army congregations have not been spared the impact of HIV/AIDS. The number of sick people who need visiting has increased, as have funerals. In rural Zambia funerals have become weekly events, disrupting the rhythm of rural congregation life. The number of orphaned children is on the rise, and the challenge for congregations is enormous. In the western part of Kenya, a Salvation Army officer in the community of Agi Sondo told of the ordeal of burying 60 church members within a single year out of a congregation of about 500. Each one required a church service before burial. For now, access to treatment for those living with HIV/AIDS in communities like Agi Sondo remains beyond reach.

In addition to shrinking congregations, the church faces the challenge of keeping hope alive within the church and the wider community. In both, sickness and death are on the increase while a cure or even access to antiretroviral treatment remains impossible. There are signs of hope, however, as church leadership and congregations awaken to the problem and begin to take ownership of it.

Throughout Africa’s Christian churches, a response to HIV/AIDS is emerging. In Kenya, Zambia, South Africa and as far as the Sudan, congregation-based responses are spreading. In Zambia the Pentecostal Assemblies of God church has gone into partnership with donor agencies and the national government to implement a programme of care of orphans and street children. They have also trained church members in HIV/AIDS voluntary counselling and testing.

Not long ago, church congregations were in complete denial of HIV/AIDS. Today, more and more people are accepting that it exists, and fighting HIV/AIDS is becoming the subject of creative engagement by church congregations. As one church leader said at the Gaborone meeting, “The latent potential of the church is yet to be wakened....The resources of the church through its congregations are yet to be harnessed and utilized in the control of this epidemic.”

Congregations are only now learning to apply their culture of compassionate care and voluntarism to dealing with this epidemic. They need training in home-based care as well as in counselling for affected and infected individuals. National resources should be made available to community caregivers who volunteer their time to provide support to the thousands being nursed in homes away from the relative comforts of institutional care. This awakening of congregational potential is worth the investment; the congregations are not only bearing the brunt of this epidemic but are also strategically placed to provide care, support and prevention services in our communities, especially rural ones.

AIDS Education and Prevention in Zimbabwe’s Transport Sector, by Moses Chingono

The National Employment Council for the Operating Transport Industry (NECTOI) is a non-profit statutory body in Zimbabwe established in 1985. NECTOI represents the interests of 2,500 employers through the Transport Operators Association and the Zimbabwe Rural Transport Organisation, and between 70,000-100,000 employees through the Transport and General Workers Union. The Council has equal representation from employers and employees. NECTOI incorporated an AIDS education and prevention programme in its activities in 1992 as a result of the heavy toll exerted upon the industry by the AIDS epidemic, which threatens to cripple the country’s entire transportation workforce.

The majority of employees within the transport industry are mobile personnel who spend most of their working time away from their families. This fact places them among high-risk groups for sexually transmitted infections (STIs) and HIV/AIDS. Many long distance drivers have acknowledged the presence of commercial sex workers along their routes and have acknowledged indulging in casual sex relationships with them, resulting in the transmission of HIV/AIDS.

As in any other employment sector, most employees in the transport industry are among sexually active age groups. The industry also happens to be one of the country’s largest employers. Faced with the challenge of HIV/AIDS, the industry had little choice but to embark on an awareness campaign aimed at forestalling the impact of the epidemic.

All the following factors were considered before the AIDS education and prevention programme was launched.

Phase I

The programme, designed to promote behaviour change and responsible behaviour, is divided into three phases. Phase I began in 1992 to promote and design specific programmes for individual transport operators. It involved the following activities:

· inform senior managers in specific companies of the HIV/AIDS situation and its implications;

· carry out awareness and prevention programmes within specific transport companies;

· recruit and train company-based peer educators to carry out AIDS education activities within their companies; and

· establish a materials distribution network within the transport operating industry.

NECTOI recruited, selected and trained company-based health facilitators whose task was to coordinate AIDS education activities in their workplaces. The employees themselves selected the peer educators. A number of qualifications were laid out for peer educators:

· responsible and capable of teaching other people;

· willing to work as volunteers;

· motivated, interested and capable of carrying consultative and educational roles outside normal working hours (e.g. lunchtime);

· respected by their colleagues; and

· as close as possible to the majority of employees in terms of age, gender and status.

This phase was fully funded by NECTOI, with additional technical and material support from the Swedish International Development Authorities (SIDA).

Phase II

The outreach phase began in 1995 when it was realized that the more mobile employees of the transport industry were difficult to reach. This phase, funded by AIDSCAP through Family Health International, ran from 1995 to July 1998.

The project covered three major transport routes through Zimbabwe linking the capital city Harare to border posts leading to Mozambique, Zambia, South Africa and Botswana. Along these routes, 21 truckstop sites were identified for the outreach programme. Its objectives were to:

· reduce the prevalence of STIs among truck drivers and their sexual partners;

· reduce HIV transmission in high-risk sexual behaviour among truck drivers;

· promote reduction of sexual partners among the primary and secondary target audience; and

· promote self-diagnosis and early treatment of sexually transmitted infection.

Phase III

This phase, funded by the Norwegian Agency for Development Cooperation (NORAD), has been running since January 1999 and has as its objectives to:

· strengthen NECTOI’s capacity to sustain workplace-based interventions throughout the transport sector;

· facilitate adoption and implementation of the Labour Relations Regulations on HIV/AIDS (Statutory Instrument 202 of 1998);

· provide technical support to companies in setting up care and counselling services for employees;

· build capacity for companies to provide facilities or referral systems for STD treatment; and

· help companies promote risk reduction among highly mobile employees through policy review of customs and immigration practices.

In Zimbabwe truck drivers are often left stranded at border posts when they await clearing of their goods. Their trucks, which are fully equipped with adequate bedding facilities, are not allowed outside customs premises and the drivers have to seek alternative accommodation.

NECTOI Programmes

NECTOI programmes include the following.

· A basic training course that runs for three days and is followed by a two-day refresher course. The main topics covered include basic facts about HIV/AIDS; prevention of HIV/AIDS; implications of AIDS in the home, workplace and community; alcohol and drug abuse; sexually transmitted diseases; and communication skills using participatory methodologies.

· intensive communication skills course

· community theatre skills course

· basic counselling course

· programme planning and management course

· capacity building course

In addition to 70,000-100,000 transport company employees, the programme also benefits their spouses, family members and social contacts, as well as their communities. It offers a range of services including peer education training in which workers’ representatives learn to offer ongoing informal education to coworkers; condom distribution; short presentations of factual information about HIV/AIDS; development, production and distribution of literature and posters; STI diagnosis and treatment at existing company-based clinics; counselling services; and voluntary HIV testing.

NECTOI develops, produces and distributes sector-specific information, education and communication (IEC) materials for use by transport companies. Materials include posters, charts, booklets in three local languages, t-shirts, caps, bags, newsletters, licence disk holders, peer education carrier bags, and weekly radio programmes on popular channels.

Successes and Constraints

NECTOI has managed to reach commercial sex workers and gain their confidence and trust. This has been very difficult given the reluctance of this group to provide information to outsiders. As a result of its activities, however, NECTOI has noted significant successes in its efforts. These include:

· an increase in demand for condoms;

· significant sexual behaviour change;

· establishment of an open communication channel between commercial sex workers and health authorities;

· more willingness by people to discuss issues related to sex;

· requests for training of more peer educators;

· insatiable demand for IEC materials;

· high attendance at IEC drama performances presented by NECTOI-trained peer educators; and

· policies initiated by transport companies that promote HIV prevention and education activities, such as offering bedding and condoms to their drivers.

The NECTOI programme’s success has been brought about by good and effective planning, professional implementation, and strong networking with local health programmes. The adult education principles employed by project staff also promoted community participation and yielded good results.

At the same time, the programme faces significant constraints. There continues to be unmet demand for condoms and IEC materials, as well as a lack of incentives for peer educators, which results in low morale. It is also difficult to carry out regular follow-up visits because of the distance between project sites.

There have been a number of lessons learned as a result of the programme. They include the following.

· Commercial sex workers are a highly mobile group who tend to congregate where they can earn a living.

· Some commercial sex workers are not keen to engage in other more acceptable income-generating projects than commercial sex.

· Didactic approaches are not effective in community programmes.

· Community theatre is highly acceptable for educating masses and breaking down barriers.

· Behaviour change for high-risk groups is a long process that only takes place after a lengthy period of time.

· Truck drivers are not very keen to discuss HIV/AIDS issues with strangers; they are happier discussing them with commercial sex workers.

· Long distance truck drivers are a reliable source of income for commercial sex workers.

· At border posts as many as 100 vehicles can be parked overnight, with local women providing entertainment and sex.

· At border towns, school-age females sometimes provide sex for money to support themselves and their families.

At present, NECTOI is undertaking a number of activities as part of its programme, including the following:

· recruiting and training peer health educators at major stopping places (project sites) and transport companies;

· carrying out awareness and prevention programmes at project sites and specific transport companies;

· networking with other AIDS service organizations;

· regular follow-up visits to project sites;

· literature related to HIV/AIDS prevention distributed to beneficiaries;

· promoting condom use through distribution of condoms at transport companies and project sites;

· motivating target audiences to change undesirable high-risk behaviour in order to reduce the risk of HIV infection; and

· carrying out an evaluation of the peer education programme to sustain its impact.

Evaluation and monitoring take place through follow-up visits that assess progress and identify constraints faced by peer educators. The visits result in re-supplying condoms and IEC materials. Evaluation is also done through reports sent by different transport companies and projects sites. In addition, comments from the general public help to evaluate the programme.

Being Positive About AIDS in Zimbabwe, by Keith Goddard

The Gays and Lesbians of Zimbabwe (GALZ) began in 1990 with two major objectives: to provide social services to the lesbian and gay community in the country, as well as counselling around HIV/AIDS. It was one of the first groups in Zimbabwe to acknowledge the threat of AIDS at a time when there was almost total denial in official circles.

Today GALZ has a fully-fledged health programme run from its new Health Centre. The centre coordinates counselling services in Bulawayo and Harare and provides safer-sex workshops and information on HIV/AIDS to members and their friends. GALZ Positive, which was launched in 1997, provides for around 20 people living with HIV/AIDS, as well as those affected by the virus through infected relatives and close friends.

All of us wish for a world free of AIDS, but in strange ways the disease has helped GALZ in its efforts to “normalize” the position of sexual minorities in society. For example, GALZ was working during 1999 to include a sexual orientation clause in a proposed new national constitution for Zimbabwe. The government asked a 400-member commission to collect testimony from citizens regarding all constitutional issues. Although GALZ lobbied for inclusion of a sexual orientation clause, the commission avoided the issue by incorporating the catch-all phrase “natural status or condition” in its proposed bill of rights, which was promoted as covering people living with HIV/AIDS.

The GALZ Safer-Sex Programme began as a way of providing raw facts about the use of condoms, dental dams and water-based lubricants, and the relative risk factors of sexual behaviours. After some time, the programme became a forum for people to begin discussing how to negotiate sex within relationships. Meeting to learn about HIV/AIDS provided gay men in particular with the means to open up sexually about themselves to others and to learn about sexual responsibility in general. One of the most discussed topics has been the problem of one partner wanting to dispense with condoms within a relationship.

Recently, the GALZ gardener complained about finding used condoms on GALZ premises after parties. Naturally the administration took action but as Romeo Tshuma, the GALZ Health Officer pointed out, “People may be careless and unthinking but at least we have got the message through that condoms are necessary.” GALZ is about to install a condom machine and a waste bin for used products on its premises.

Despite the popular belief in Africa that AIDS is a heterosexual disease, it is widespread in the gay and lesbian community as well. The care and support that GALZ Positive and the GALZ Chengetanai Queens Club have provided to sick members and their families have often resulted in affected families becoming more accepting of sexual differences. The following story tells how HIV can often bring out the best in us.

A few years ago Noah, a member of GALZ Positive, died. Before his death, Noah’s family had accused GALZ of turning their son into a homosexual and giving him the HIV virus. At times, they refused to let visitors from GALZ Positive see and care for him. Undaunted, GALZ Positive provided a wheelchair and access to a doctor while he was alive. When Noah died, GALZ paid for the coffin. At his funeral, GALZ members fulfilled most of the domestic duties generally assigned to women in this country, including all the cooking, cleaning and serving food.

During the funeral Noah’s father, near tears, publicly acknowledged the contributions of Noah’s gay friends. He said this had made him realize just how caring gay people could be. Even the church pastor, known for his disapproval of homosexuals, could not help but be impressed by the efforts of GALZ Positive. At the close of the funeral, Noah’s clothes were distributed to members of his family: some of the clothes were also given to Noah’s “gay family,” a profound symbol of acceptance and recognition within Shona culture.

In a completely different scenario, the Zimbabwe National Network of People Living with HIV and AIDS (ZNNP+) refused to allow GALZ to join the network on the grounds that homosexuality was an “evil” that was contrary to “traditional culture and values.” In addition, GALZ was told that its members had AIDS because they were gay.

After a long struggle, GALZ Positive was eventually admitted to ZNNP+ in 1999. Even on the day of the first meeting it attended, GALZ received an anonymous phone call asking it to “stay away.”

Not only did the GALZ representative, Peter, attend the meeting but he was voted youth leader for the network. In a few short hours, Peter had put a face on gay issues and had dispelled fears that GALZ would monopolize the organization and divert funding. Peter proved to be not only a reasonable and patient person but a great asset to the group, especially when it came to matters of disclosure. He had already “come out” as a gay man and was now out to his family as a man living positively with HIV. GALZ makes a point of joining all protests and actions that are in solidarity with people living with HIV/AIDS. This sense of concern for others, regardless of their sexuality, has not gone unnoticed.

GALZ also organized the Skills Clinic in Cape Town (South Africa), which involved seven African countries. The manual from the meeting broke new ground by moving beyond issues of sexual identity, concentrating instead on sexual behaviours. The module cuts across labels of “heterosexual” and “homosexual,” and will be useful to all sexually active people regardless of their sexual orientation. The module is to be distributed throughout the Southern African region, and will do much to educate people about the nature of human sexuality and problems of disclosure.

There are three full-time volunteers at the GALZ Health Centre, who follow the regime of healthy and positive living with HIV. They have become role models for others in the community in their bravery and determination to survive. The virus has altered their lives and their attitudes to life.

In September 2000 the GALZ Health Officer, Romeo Tshuma, took the proactive approach of passing on to local health clinics and police stations HIV/AIDS posters sent to us by well-wishers. Many of the posters are colourful with suitably positive messages. The posters have been put up - and have remained - on many clinic and police station walls.

Since 1994, GALZ has found it difficult to keep in touch with its community by using public media. In 1994, the state-controlled Herald newspaper refused to run an advertisement for the GALZ counselling service on the grounds that it was a contact advertisement for sex. In March 1999, with the advent of the popular independent The Daily News, GALZ finally managed to advertise regularly in a daily newspaper. Since then, an average of one person every weekday has been joining the organization.

During September 2000 in a surprise move, the Herald contacted GALZ and asked if the organization would consider running an advert. Although GALZ declined, the incident showed how far GALZ had come in its struggle to convince the state that its existence in society was genuine and useful.

GALZ has done much to break down the prevailing attitude of Africa, as a dark continent of disaster with one mainstream sexual orientation. GALZ represents cultural diversity and is responsible for the appearance in public of black lesbian and gay men, who are also open about their HIV status. This stance has been commended by many. The organization is now moving beyond the single track of fighting for lesbian and gay rights. The former GALZ slogan of “Gay Rights are Human Rights” has now been replaced by “Sexual Rights Are Human Rights,” and this message is reflected in all GALZ advertising.

HIV/AIDS has dramatized problems of poverty and access to health care, but nowhere has this drama been more obvious than in the area of sexuality. HIV/AIDS has helped us reflect upon ourselves and our use of the terms “lesbian” and “gay” in Africa. Within the context of the disease, GALZ now believes much more in the right to sexual autonomy regardless of one’s sexual identity. There are few differences between heterosexuals and homosexuals when it comes to the enjoyment of sex, and these old divisions seem less and less important as we continue the battle against HIV/AIDS.

In a recent cultural exchange programme between GALZ and organizations from other parts of Africa, the common language was not “sexual identity” as one might have expected, but that of HIV/AIDS.

As for the future, GALZ intends to take the lead regarding the sexuality of young people. This is an area that in the past would have been considered dangerous for the gay and lesbian lobby, given the prevailing attitude that all homosexuals are child molesters. GALZ is promoting the production of a manual on sexuality and young people, which would move beyond the limited sex education approach that concentrates on danger, disease, predatory uncles, sugar daddies and mummies, pregnancy and death.

GALZ will be collaborating with organizations working to stop sexual abuse of children. That GALZ is one of the first to raise this issue, and has the power to stimulate nation-wide discussion because of its reputation for controversy, is neither here nor there. HIV/AIDS has given GALZ the opportunity to put forth the issue of sexuality, which will go a long way toward helping young people in Africa protect themselves and come to a better understanding of themselves as sexual beings.

Lesbians and gay men in the United States and Europe showed their capacity to reinvent themselves in light of the AIDS epidemic. The services and support that the gay and lesbian communities set up for themselves have served as models throughout the world even though, as in Zimbabwe, this is not widely recognized or acknowledged. This pioneering spirit and capacity for invention in the face of crisis is no different when it comes to Africa. The gay community in the United States did not give up when the HIV virus first appeared, despite official accusations that this community had brought the “gay plague” upon itself. In Africa, 25 years later, the offshoots of the original revolution show the same fighting spirit and the same facility to adapt and take on the challenge.

(introduction...)

Since HIV/AIDS became a part of Africans’ lives two decades ago, thousands of non-governmental and community groups have embraced the response to the epidemic in an effort to support and assist their relatives, neighbours and friends whose needs were being left unmet. Often, their plight was the result of lack of funds and staff or the product of fear, stigma or discrimination. Africa’s long tradition of community mobilization and solidarity mechanisms had served the continent well in its earlier battles against devastation or injustice. Now, these same structures are coming to the help of people affected by the devastating AIDS epidemic. Groups are mobilizing around a single goal: stopping the spread of HIV/AIDS. Following are the testimonies of people whose struggle as AIDS activists and care givers forces them to come face to face with the disease on a daily basis. These accounts describe their work in large and small NGOs and community groups. They are based on their own words and experiences, not as academics or officials, but as front-line fighters in the battle against AIDS.

Côte d’Ivoire: Caring for Orphans

Lumi Action was founded in Abidjan in 1994 by three young HIV-positive people. It launched its efforts to care for AIDS orphans and support their families in response to both the growing number of people dying from AIDS and to the epidemic’s social and economic consequences. In 1997-1998, the organization began with 25 children; today it is involved in caring for several hundred. Its primary objective is to make life easier for the children in their foster families. The problem in Cd’Ivoire is acute: at the end of 1999, some 420,000 children had been orphaned by AIDS since the start of the epidemic and had lost either their mother or both parents to the disease.

Many foster families are overcrowded and eat one meal a day. Parents only take children to hospital if their illness gets worse, because they are unable to bear the combined cost of transport, medical examinations and prescriptions. At school, the huge size of classes prevents teachers from teaching all pupils effectively. Finally, it is difficult for coordinators to travel to visit the families because of transport costs and the remoteness of some families.

AIDS orphans carry a heavier burden than other orphans. They fear that their neighbours might find out that their parents died from AIDS (if they themselves are even aware of it). Lumi Action tries as often as possible to place a child with a relative, but sometimes this cannot be done. In the worst cases, an orphan is placed with an acquaintance.

There is also occasional tension between orphans and their foster family. This may be because the foster family and child do not know one another and need to adapt. The foster family may already be large, and its limited resources may be stretched. One of the spouses in the foster family may object to a new burden, or the child may be wrongly accused of bringing misfortune. Foster parents may fear that even if there is no proof that the child is infected, he or she may still pass on the infection. To help, Lumi Action is assisted by a psychologist who counsels the children and, if necessary, their guardians.

More and more households are headed by women, indeed by young adolescent girls. Conversely, the elderly and mothers in distress are virtually without support and may end up completely dispossessed. Activities such as Lumi Action have enabled many children to receive an education, and have helped families to pay medical bills and keep a roof over their heads.

Democratic Republic of the Congo: Bearing Witness

In the Democratic Republic of the Congo, about one million adults and children are infected with HIV/AIDS. In July 1994 a non-governmental group, the People Affected by HIV/AIDS Organization (PAHO), was launched to provide assistance to infected and affected persons, help them come to terms with the disease, and lead valued lives.

People living with HIV/AIDS usually feel frustrated and occasionally rejected by those around them. PAHO has come into contact with women with AIDS who have been either widowed or abandoned by their husbands, or cast out with their children by their families.

The first stage of PAHO’s work is to gain these people’s confidence and help them understand that they are full human beings with rights and duties. This groundwork is tactfully performed by fieldworkers who visit beneficiaries in their homes.

The second stage involves the organization of information sessions at which people living with HIV/AIDS describe their experiences to groups of 30 to 50 people with whom they feel secure and accepted. This encourages them to speak frankly and openly about their seropositivity. The groups are made up both of people with HIV/AIDS and people presumed to be healthy. People with HIV/AIDS describe the experience of taking tests and learning the results, and describe the different emotions they feel during these difficult moments. They also describe the frequently negative response of their friends and acquaintances who disdain, exclude or stigmatize them with such remarks such as, “Imagine being in direct contact with an infected person!”

They learn about the dangers of infection, its potential impact on health, as well as their risk of rapidly and silently spreading HIV infection through irresponsible behaviour. After a few people with HIV/AIDS describe their experience, group leaders summarize the different channels of infection and methods of prevention. The meeting ends with a question-and-answer session open to the audience. By the end, participants are no longer as keen to leave as they might have been when they arrived.

At one information session on HIV/AIDS in 1997 for young leaders from 15 secondary schools in five Kinshasa communes, young people were eager to learn more about the AIDS epidemic and recalled their own high-risk behaviour. Each year, young men and women attend the awareness sessions and educational talks on AIDS organized for them by NGOs. Some are inspired to undertake similar AIDS control activities in their own schools or districts. Others even apply to become active members of the NGOs.

The testimonies given by people living with HIV/AIDS at such information sessions demonstrate their awareness of the risks. This process of realization helps ensure that people living with HIV/AIDS will adopt more responsible behaviour and reduce the spread of AIDS. It also awakens caution in others by warning people about the AIDS epidemic through personal experience and example. Organizations that help form groups to bear witness, and lead to the constitution of focus groups to spread information and education on HIV/AIDS to a broad sector of the population, can be especially effective in fighting the spread of the disease.

In its work PAHO draws on the skills available in local institutions such as the Society for Women and AIDS in Africa (SWAA/Congo), National AIDS Control Programme (PNCS), National AIDS Coordination Office (BCC/SIDA) and the World Health Organization’s then Global Programme on AIDS. PAHO has a total of 35 active members, with 250 beneficiaries including 75 women living with HIV, 20 HIV-positive men and 25 children, and 130 AIDS orphans.

Ethiopia: Letter From an HIV/AIDS Counsellor

One of the major tasks for NGOs engaged in HIV/AIDS prevention and control activities in Ethiopia is to provide psychosocial support for per-sons living with HIV/AIDS (PWAs) through counselling services.

My relatively long experience as an AIDS counsellor has taught me that persons with HIV/AIDS, more than other patients, are under attack mentally and physically and their illnesses aggravated because they imagine the worst.

Patients faced with fear and who live under the continuous stress that it causes usually feel symptoms of other diseases. They may also develop an imaginary pain in a particular part of their body only because they are scared. Such people begin to experience symptoms they have heard of or read about, while their bodies may be healthy.

Healthy HIV-infected individuals, especially those who discover by complete surprise that they are seropositive as a result of blood tests for visa applications or jobs, are among those who start to decline quickly because of fear.

These persons are often tested before receiving adequate pretest counselling services and perhaps even without any kind of accompaniment or support. It seems to me that they die much faster than those who have come to terms with their sero-status more gradually and have had time to adjust through counselling. Fear of stigma and death, lack of courage sometimes, and misconceptions and poor understanding of the nature of AIDS overwhelm them.

There is also a fear of rejection: stigma that comes from being HIV-positive has its source in the common belief that one becomes infected only through sexual intercourse. During both post-test and ongoing counselling sessions, I and other health workers and AIDS counsellors tell our clients there are other ways to become infected. We also try to put AIDS in perspective, comparing it to other illnesses one can acquire without being seropositive, such as cancer or hepatitis B.

Our clients often feel that contracting HIV is the worst fate any human being can face. During our post-test and ongoing counselling services, we try to remind them that AIDS is not the only special disease: we talk about how we are all vulnerable to things such as car accidents, electric shock, drought, flood, armed conflict, earthquakes and other things that can kill us unexpectedly or more brutally than AIDS.

We also inform PWAs that the most important attributes of long-term survivors are their strength, capacity and courage to develop a positive attitude toward life and their great determination to cope with the disease. Much of their ability to survive comes from their mental strength and their will to live. We tell our clients that the one thing that gives PWAs power over HIV/AIDS is moral preparedness to live positively with their sickness. We advise them that one of the ways to overcome both the anxiety and the stress is sharing their burdens with God, relatives and friends.

If people suspect they are developing a disease, as counsellors we try to motivate them to visit their doctors and live as healthily as possible by adopting a proper diet and exercise, and avoiding alcohol and tobacco. We also encourage them to assume a positive and less bitter outlook on life. We tell them that even though there is still no cure, AIDS researchers have not been completely without success. And we refer often to our faith and remind clients that we do not know what God has in store for us.

Malawi: Access to Treatment

Malawi is one of the world’s poorest countries, and the sub-Saharan African region is home to almost 80% of the world’s 36.1 million people living with HIV/AIDS. The situation in Malawi is grim, with high rates of HIV infection. One of the major concerns is access to treatment for the disease.

The number of illnesses and deaths in Malawi is growing - from 17 AIDS cases in 1985 to 53,000 by 1999. With the sexually and economically productive 15-49 age group at highest risk, the country has begun to register declines in economic productivity. Although AIDS is under-reported, the National AIDS Control Programme (NACP) estimates a total of 265,000 cases in the country between 1985-1998, as well as some 400,000 AIDS orphans.

Founded in 1997, the Malawi Network of People Living with HIV/AIDS (MANET+) is an umbrella group for people living with AIDS (PWAs) and HIV/AIDS community-based organizations. It has 30 HIV and AIDS support groups across the country. The network is based on the declaration of 42 governments at the Paris Summit on AIDS in December 1994, in which governments recognized that the principle of Greater Involvement of People Living with HIV/AIDS (GIPA) is a critical component to ethical and effective national responses to the epidemic. GIPA emphasizes recognition of the important contribution people infected with or affected by the disease can make in the response to the epidemic. Creating space within society for their involvement and active participation in all aspects of the response is therefore a critical element of an effective HIV/AIDS intervention.

Access to treatment continues to be a key issue surrounding the epidemic. Most citizens in Malawi, faced with low income and a hand-to-mouth existence, have no access to treatment. This must also be viewed against a background of inadequate health facilities, drug supplies and medical personnel in public hospitals. Growing demand for health services due to increased illness is also exerting further pressure on an over-burdened infrastructure.

Access to treatment covers both the medical infrastructure and HIV drug management. Additional factors include political commitment to creating an enabling environment and getting issues resolved. Access to treatment is a poor-country issue. In wealthier nations, treatment is both available and accessible. This raises crucial questions: Should people in poor countries be left to die because they are poor? Will drug companies interested in profiting from an epidemic feel rewarded in the long run?

When people fall ill, they may go to hospital. But due to the length of their illness, they often end up in home-care. Antiretroviral drugs are out of the question for most Malawians due to cost, and even drugs for opportunistic ailments are not available in adequate quantities.

MANET+ has been working to improve access to treatment in Malawi by advocating for a stronger medical infrastructure, training of medical personnel and health care workers in the use of antiretrovirals, negotiations for subsidies from suppliers or reduced prices of antiretroviral drugs, legislation enabling parallel importing and compulsory licensing, and a national drug policy and management programme.

But who would benefit from access to treatment, and would the treatment management strategy ensure compliance to medication? Obviously in the face of a life-threatening epidemic, all persons infected and affected by HIV/AIDS would wish to participate and benefit from any increased access to treatment. Clearly, a comprehensive treatment management strategy will be required to help determine when possible benefits from access to treatment would be made available.

The issue of mother-to-child transmission of HIV before and during birth, and through breastfeeding, is also central to Malawi’s epidemic. Preventive measures involving providing expectant mothers with the drug AZT to prevent HIV transmission are being examined. There have also been deliberations on the various modes of feeding. In Malawi, it would appear very strange for a mother to choose not to breastfeed. This would provoke negative social responses and raise suspicions about the mother’s HIV status, leading to potential stigma and discrimination. The other issue is cost: very few mothers could afford not to breastfeed since alternative feeding methods would be too expensive. In the case of breastfeeding, NGOs and government would be required to put in place programmes to cushion the possible impact of changes in feeding through education and provision of support to HIV-positive mothers.

Nigeria: Working with Prison Communities

Life Link Organisation (LLO) is a non-governmental, non-profit group founded in Nigeria in May 1994. It works in selected prisons in five states - Lagos, Kano, Abuja, Edo and Oyo - on reproductive health issues related to the prevention of sexually transmitted infections (STIs) and HIV/AIDS. Life Link’s mission is to provide health and psycho-social services by disseminating information, and providing education and counselling by well-trained personnel. Its activities target four groups: prisoners, prison staff, their wives, and youth. So far Life Link has reached more than 8,200 people with its HIV/AIDS education programmes.

Since the beginning of the AIDS epidemic little has been done in prison communities in Nigeria. Life Link is the only group in Nigeria that has targeted prison communities with HIV/AIDS prevention and control programmes.

Initially, certain authorities could not understand why HIV/AIDS education was needed in prisons. Reactions such as these could be heard: “The problem of prisoners is not AIDS, but food.” Life Link had to be persuasive with cogent reasons and facts. It also had to be tolerant, persistent and patient in order to convince those who were antagonistic.

Prison communities are vulnerable to HIV/AIDS for several reasons. Homosexual practices exist among certain inmates; blood-contaminated instruments such as razor blades can be shared; and some prison guards can be exposed to high-risk behaviours because they are regularly transferred from one post to another but are unable to take their wives.

In 1990 a pilot study was undertaken in Lagos by the Prison Officers Wives Association. Its findings on sexual practices and awareness of AIDS among inmates revealed the following: 10% of the 400 respondents said they knew at least one person involved in homosexual practices. Yet most prisoners were not aware of AIDS. Many did not even know about STIs other than gonorrhoea, and few knew how to prevent these infections.

Before the education programme, knowledge of HIV/AIDS and STIs was low. Today Life Link can count the following positive changes: a good number of prison community members are well-informed about HIV/AIDS and STIs, and unsafe homosexual practices have been reduced in prisons where HIV/AIDS prevention activities have been carried out. Negative attitudes toward people living with AIDS have changed, and there is now a greater readiness to help those who are infected or ill with the disease.

After continuous advocacy by Life Link, infected inmates have started to benefit from dietary supplements, as well as palliative drugs and ointments for treatment of rashes and other skin infections. Clean shaving instruments, needles and syringes have been provided to the prisons’ medical units for inmates and guards, as part of the effort to curb further spread of infection within the prison system.

The prisons now carry out HIV/AIDS prevention programmes in collaboration with the National Action Committee on AIDS (NACA) and the State Action Committee on AIDS (SACA). Activities include organizing seminars and training workshops for prison officials, providing drugs for infected members of the prison communities, and offering care and support services for people living with HIV/AIDS.

To ensure the programmes continue, trained peer health educators at each location have formed Anti-AIDS Clubs. Their membership is open to anyone interested in joining. There are now 16 clubs in the prison communities with whom Life Link works, and each has a minimum of 25 members.

In conclusion advocacy, information, education and communication, monitoring, evaluation and continuous counselling are important for success. However, in order to break down barriers of the prison world, government involvement is equally necessary.

Uganda: Educating Youth about HIV/AIDS

The vision of the Straight Talk Foundation (STF), based in Uganda, is that every adolescent in the country should be well-informed on issues related to HIV/AIDS, sexuality and reproductive health, and be equipped with the life skills necessary to make the right decisions.

The Foundation originated from a monthly HIV/AIDS awareness newsletter, Straight Talk, launched in late 1993. The newsletter soon evolved into the leading sexual and reproductive health information medium for adolescents in Uganda. Straight Talk messages promote education about body changes, life skills, HIV and the prevention of sexually transmitted infections (STI), education, and safer sex practices.

Because of the growing demand for information from younger adolescents, another newsletter entitled Young Talk was launched in early 1998. Young Talk messages promote abstinence, life skills, perseverance in school especially for girls, children’s rights, and HIV/AIDS prevention.

In April 1999, the Foundation also began a weekly radio programme targeting out-of-school adolescents. After a year of operation, surveys revealed that 42% of secondary school-aged adolescents - predominantly male - listened to the Straight Talk radio show.

The Foundation also challenges teachers to seek ways to provide their schools with more adolescent-friendly environments. It provides counselling on HIV/AIDS, relationships, sex and love, as well as effective referral for treatment of sexually transmitted infections and other health problems. Straight Talk Clubs, which have mushroomed on their own in many schools, are encouraged to become school-owned. They are becoming a place where sexuality is freely discussed in a social, family-based and personal context.

Today, the Foundation reaches an audience of about 4.5 million. According to the newsletter’s growing reader response, about one-fourth say that Straight Talk has influenced them to consider abstinence, while a further 20% have learned about and considered condom use.

In Uganda from 20% to 52% of sexually active adolescents use condoms. Research shows that sexual activity is greater among students in less-advantaged schools or from poorer backgrounds. These students also receive less exposure to appropriate sexual and reproductive health information and support.

To remain credible and up-to-date, the Foundation’s programming is driven by its adolescent audience. Most of the information published and issues discussed come from adolescents themselves through letters or dialogue during school visits.

The Foundation’s effective networking relies on 500 NGOs, community-based organizations, local institutions and churches. The latter have been surprisingly effective. The Foundation has also lobbied the government and partners in civil society for appropriate HIV/AIDS education and related activities. It publishes a monthly supplement that appears in the leading daily newspaper and has allied with the Ministry of Education and Sports, and the Ministry of Health. The Ministry of Education helps the Foundation access schools and deal with any unsupportive school administrations. The Foundation’s interventions have never faced serious opposition from the government or from parents.

In addition to information, young people need supportive structures as well as adolescent-friendly health units, school health clinics, readily available condoms and other contraceptives, and a supportive community. Uganda has few adolescent-friendly centres at the moment, but the Foundation and NGO partners plan to help set up comprehensive adolescent health services within existing health facilities to offer STI treatment and voluntary HIV counselling and testing.

HIV/AIDS prevention messages in Uganda are relatively straight forward when in English. However, translating these messages into local languages is difficult because many terms about HIV/AIDS or sexuality do not exist. In addition there is a risk of sounding culturally insensitive, crude or frankly obscene. This is being slowly overcome by involving community leaders or locally-based NGOs in developing the messages.

Parents and community leaders need to be sensitized about the meaning of children’s rights, which are currently viewed with scepticism and suspicion. This is not surprising in a society where adults make all the decisions. Freedom of expression for young people is not easily accepted.

Adolescents may also find the concepts of rights and life skills difficult to grasp. A girl who has been forced to drop out of school to get married may know she has a right to education. She may also know she can take her parents to family court but would find this very difficult to do because she may lack self-confidence, and her family and community might reject her. In the same way, an incestuous uncle might easily get off the legal hook in the name of “family honour.”

Today’s Ugandan adult population does not have a tradition of speaking frankly and openly about sex education issues, and is therefore not very comfortable discussing these and reproductive health with adolescents. Homosexuality, for example, remains a controversial subject. In schools, teachers uncomfortable with their own sexuality cannot be expected to help adolescents understand theirs. Fortunately, more parents than ever say they are passing the Straight Talk newsletter to their teenagers.

Traditions, which can also stand in the way of today’s sexual health needs, are difficult to challenge. Some, including early marriage and wife inheritance, evolved from economic needs. A schoolboy may know he would be expected to “inherit” his dead brother’s wife, but if his brother dies of AIDS, what should he do? His decision will depend on whether he has a supportive and enlightened community or family. Polygamy remains wide-spread and is fuelled by economic hardship. A number of adolescent girls depend on older working males - “sugar daddies” - for money for school fees and personal needs. In exchange for monetary gifts, girls are expected to offer sexual favours. In these sexual encounters the male usually sets the rules and can insist that no condom be used.

Zimbabwe: Providing Home-Based Care

With the high rate of HIV infection in African countries and hospitals unable to accommodate the resulting large number of sick people, discharging patients for home care has become one way to cope. Many people in Africa believe that a person discharged for home-based care has been sent home to die. But that is not true. Individuals can actually be helped to reclaim their lives and return to work.

The Centre is a Zimbabwean AIDS service organization that focuses on long-term survival for people living with AIDS. It provides counselling, nutritional guidance, advocacy and lobbying for the rights of people living with AIDS (PWAs), carries out information gathering and dissemination, and conducts training.

In African countries the home-based care approach was developed mainly because of AIDS. The Centre, along with other NGOs, under-stood that AIDS is more than an illness. Because women are usually more vulnerable, NGOs dealing with HIV and women’s rights were among the first to develop. When women are rejected by their families because they have been widowed or have HIV and feel helpless, The Centre helps by supporting them psychologically. It also refers them to other organizations for legal assistance, such as the Zimbabwe Women Lawyers Association and the Widows’ Association, whose services are free of charge to the poor.

Home-based care is the best kind of care an individual can hope for. At home, patients and their relatives spend as much time together as they want. Patients are free to come and go, and they can take on responsibilities and not feel helpless. Their diet can be monitored easily, home-cooked food is usually better for their health, and home-based care is much cheaper for the family.

Across Africa, caring for a sick person is usually the responsibility of women. It is a challenging task, and often the caregiver feels tremendous stress because of the nature of the illness and attitude of the patient toward both the illness and the caregiver. The caregiver may also feel isolated when relatives refuse to help, and may become angry at the sick person, especially if he or she is a spouse. The care-giver may also lack the necessary resources including gloves, essential drugs and food. In some cases the high death rate associated with AIDS has forced the sick to care for the sick. The Centre provides caregivers with basic counselling skills and information on HIV and stress management, since knowledge about HIV has been shown to help allay fears.

Mother-to-child transmission of HIV poses a significant problem because traditionally in Zimbabwe women breastfeed. Since children can be infected through breast milk, what does one feed the child?

A key issue in home-based care is that of the gender of the caregiver. Research by the United Nation’s Development Fund for Women (UNIFEM) on gender-related socio-economic impacts of HIV/AIDS in Zimbabwe has revealed that men receive better care at home than women. When women fall sick first, they tend to be abandoned by their partners; men rarely become caregivers. When the husband falls sick first, the wife is expected to stay home and care for him. Moreover, girl children are often deprived of opportunities for education early in life, a situation exacerbated by HIV/AIDS. When girl children are pulled out of school to care for a sick relative, they also lose other opportunities to learn income-generating skills.

NGOs play a pivotal role in helping where the government fails. Unfortunately most NGOs are funded by foreign donors, and this has created a dependency syndrome. In Zimbabwe an AIDS levy was initiated in order to help pay for things such as home-based care and orphan care, but not everyone has access to the funds, especially in rural areas. Moreover, most NGOs involved in home-based care are located in towns, while the majority of people needing home-based care are in rural areas. The challenge of providing home-based care in urban areas includes the fact that landlords may evict a tenant thought to be HIV-positive. And in rural areas, lack of resources makes provision of home-based care especially difficult.

Poverty: At the Root of Southern Africa’s AIDS Epidemic, by Sam L.J. Page

Poverty is the driving force of the AIDS pandemic in Africa: in poor communities men are forced to migrate to urban areas in search of work, which means that husbands may be away from their wives for a year or more and may seek extramarital relations. This is particularly true when they frequent bars, usually the only form of entertainment provided by their employers. At the same time, poor women are being forced into prostitution as the only means of earning an income to feed their children. As a result southern Africa has become the global epicentre of the AIDS epidemic. One of the most high-risk groups is married women, who are often powerless in matters of sexual relations. In some communities, up to 48% of routinely-tested pregnant women are HIV-positive.

Destitution in Rural Areas

While African smallholder farmers have always been poor, those infected or affected by HIV/AIDS become destitute. This is because of additional expenditures on medical fees, funeral expenses and the care of orphans. The loss of adult family members means less farm labour is available. As a result fewer crops are planted. These are also planted later, weeding is neglected, and harvests are reduced. There is also a shift away from high-risk, high input and labour-intensive crops (such as cotton) to low-risk, low input and labour-intensive crops (such as cassava).

When husbands die their families lose remittances from his employment. When women (who are responsible for securing the family’s food supply, caring for the sick and bringing up relatives’ orphans) are widowed they often loose their right to land. And their children are severely traumatized and face an uncertain future, either living with relatives or fending for themselves.

Despite decades of development in rural Africa most people still do not have access to clean water, hygienic sanitation, electricity, affordable health care, education and food security. As a result of the AIDS crisis on already-weakened African economies, even the most modest development gains are being lost. People living with HIV urgently need all these things. Yet this situation is likely to worsen. With access to clean water, timely treatment for opportunistic infections and a nutritious diet, people living with HIV can live healthy and productive lives for ten to 15 years. In southern Africa, people are dying of AIDS within five years because they are poor and do not have the most basic food security.

In fact the commercialization of agriculture in the face of the epidemic has put countries such as Zimbabwe at risk of famine. The need to export agricultural commodities in order to raise foreign exchange has influenced local extension policies in favour of exotic crops that require high input technologies. These have displaced indigenous crops on which household food security depends. This means that farmers who cannot afford to buy hybrid seeds, fertilizers and pesticides no longer have any low input-requiring food crops to fall back on. Non-seed producing, vegetatively propagated crops such as cassava, taro and sweet potato and nutritious intercrops such as finger millet, cowpea, bambara groundnuts and pumpkin are almost extinct in some areas.

Donors as a Cause of Poverty in Africa

For most Africans, the implementation of structural adjustment programmes heralded the beginning of their descent into abject poverty. In Zimbabwe for example, job cuts in the government sector and the sudden influx of cheap foreign products undermined the fledgling industrial sector and led to massive unemployment (now more than 60%). The introduction of school fees and prohibitive medical charges also coincided with the beginning of the epidemic. International institutions were fully aware of the impending disaster: by 1986, representatives from the United States Agency for International Development (USAID) were already predicting that within ten years every family in Zimbabwe would lose at least one relative to AIDS.

In the meantime, international donors have been promoting the need for poverty alleviation (and in some cases poverty elimination) while mainly addressing its most obvious symptoms rather than underlying causes. Those of us working in development are all familiar with the need to include “buzz” words in our proposals such as women, gender, sustainable, food security and now HIV/AIDS. But where is the substance to these ideals when the underlying causes of women’s (and men’s) oppression - such as lack of land rights and access to education, employment and micro-credit - are not tackled? How can agriculture be sustainable when indigenous food crops have been obliterated by high input-requiring hybrids? What is the meaning of food security when you have to sell your harvest to pay for the inputs and exotic vegetables you have been told to plant, with such serious pest problems that you have to smother them in pesticides? And how can we address the problem of HIV/AIDS while people are getting poorer? The biggest problem now facing development workers in poor communities in southern Africa is that of sheer hopelessness: people cannot plan for the future while they fear that their communities are disintegrating and their loved ones are dying.

Both local governments and the international community have singularly failed to avert the AIDS catastrophe in Africa. In many countries the future looks to hold famine, national insecurity, exodus of the educated middle-class, and complete social breakdown. The beginnings of this scenario are already evident in Zimbabwe.

Donors as a Constraint to AIDS Groups

While many government departments are abdicating their responsibility for reducing the HIV/AIDS epidemic, local non-government organizations and community-based organizations (CBOs) are most active in the struggle to halt its spread. These local organizations are dependent on funding from external donors, however, and these funds are extremely difficult to get. The staff of the African Farmers’ Organic Research and Training Group (AfFOResT) normally spends up to 50% of its time on fundraising, including writing proposals and progress reports. However, this has recently risen to more than 90% because of the political troubles in Zimbabwe, which has caused many donors to pull out of the country. As a result many local NGOs and CBOs are under-resourced, and lack the necessary information or skills to deal with the crisis effectively. They are also reeling from the effects of HIV/AIDS on their own staff.

Furthermore, many international multilateral and bilateral donors refuse to fund NGOs on the grounds that the small amounts of money they require cannot be justified in terms of administering costs. Some of the donors that do fund NGOs saddle their so-called partners with so much administrative work, proposals, and narrative and financial report-writing that there is barely time to implement the project. Narrow political interests or even the personal interests of the desk officer often determine the kinds of projects donors support. As a result many projects are donor-led, and if local workers try to promote their own ideas then funds may not be forthcoming. Even when agreements have been made and contracts signed, funds may come late or not at all. This causes insecurity and throws the whole programme into jeopardy. It is not uncommon for local workers to have to reduce their salaries in order ensure the work is completed.

AIDS widows in an AfFOResT project in Chinamhora 30 kilometres north of Harare are unable to turn their organic food producing and processing activity into an income-generating enterprise because they cannot get access to micro-credit. They need just UK£500 for materials to build their solar dryers and food processing shed.

The Way Forward

Donors and development agencies need to revisit their policies. Considering the scale of the disaster being caused by HIV/AIDS, they cannot simply offer more of the same failed policies. “Mainstreaming” HIV/AIDS into existing policies is not enough. There is an urgent need for dialogue between all stakeholders to create new and effective policies and partnerships that will reduce the need for male migration and female prostitution and thereby slow down the spread of HIV. There is also need for effective policies that will promote longevity in people living with HIV, and ensure that AIDS orphans stay in school while receiving due care and emotional support.

Donors should become aware of the underlying causes of the HIV/AIDS epidemic in Africa and campaign more vigorously for the alleviation of poverty in all international fora. They should also recognize the shortcomings of local governments in dealing with this crisis, and increase their support to NGOs and CBOs that are committed to fighting the epidemic at grassroots level. This means promoting sustainable (zero-input) agriculture for the production of food and cash crops, community empowerment, and human rights in terms of health and education. Many NGOs and CBOs will need to build their capacity in terms of the most appropriate responses to the suffering caused by the epidemic, and donors should be prepared to fund this process.

One solution to the administrative problem caused by small-scale funding could be the creation of in-country administrators who could disburse block grants, provide suitable spreadsheets to the grantees, and provide follow-up support to their respective bookkeepers. This would ensure that the donors’ funds are properly accounted for, and prevent the NGOs and CBOs from getting bogged down in endless financial reporting. The establishment of an ombudsman would lead to a fairer outcome to disputes between donors and their partner organizations. Donors also need to be more responsive to the urgency of the situation and be able to approve funds within a few weeks or months rather than years. Finally, there is a need to recognize that rural people work according to the seasons and not according to the financial year.

More funds need to be made available for fighting the epidemic at all levels. Donors must provide assistance now and not wait for governments to change - poor and oppressed people can neither change governments nor win the war against AIDS.

Community Organizations and the AIDS Response, by Moustapha Gueye

Since time immemorial people have reacted to new phenomena, particularly when their physical and social integrity or health were at stake, by adopting a variety of strategies. These have included seeking comfort and reassurance from friends, other members of the close community or relatives; self-medication; and treatment by traditional healers or medicine men, depending on the beliefs and practices that hold sway within a particular community. These strategies for finding solutions existed well before AIDS, and were used for illnesses that in most cases were curable.

AIDS spreads as a result of social, economic and interpersonal dysfunctions, and its impact exacerbates deprivation and problems when it does not simply create them. The AIDS epidemic has upset all our individual and collective human certainties. It has also called into question not only the nature of our relations with our environment, but also the nature of the bonds of solidarity between individuals. At the same time, the epidemic has laid bare the shortcomings of human relations: power relations and the sharing of responsibility between men and women, rich and poor, and between present and future generations.

However, it has also reminded us of the value of virtues such as humility, compassion, love, sharing, mutual help, respect for others, dignity, and the protection of human rights.

In response to this threat to people’s personal and professional lives, individuals and their families reacted. Conventional reactions soon proved inadequate, however, and an unprecedented mobilization of the whole community and of its diverse forms of organization became necessary. In this way, community-based organizations (CBOs), NGOs and women’s groups that used to concern themselves with development began to turn their attention to information and assistance activities before developing more coherent response programmes. As a result, the community response has found itself in the forefront of the various efforts to provide a response. It has also acted as a catalyst for politicians and continues to inspire and complement their efforts.

We were familiar with community organizations involved in activities to develop health services and education. These organizations have been compelled to adapt their programmes and practices to the threat posed by AIDS. Depending on their area of activity, they have innovated new forms of participative research and have set up new partnerships. Against a background of ever-increasing government penury and insufficient services, they have taken the lead in responding. In an ideal world social services should be the responsibility of governments, but in the context of AIDS so great is the urgency that communities and community organizations have taken fate into their own hands by initiating activities themselves.

Education and Information Campaigns

Community organizations continue to operate education and information programmes with a focus on young people, women, workers, schools, prisoners, organized bodies and the population at large. The challenge they have to face is the lack of correlation between increased knowledge and changes in behaviour. This makes it all the more necessary to innovate and implement strategies based on people’s actual experiences.

Capacity Building

Community organizations are also involved in training volunteers, health workers, peer counsellors, home carers and project managers. Frequently, their training programmes develop skills for caring for patients in the terminal phase, project management and income generation.

Condom Promotion and Distribution

Condoms are distributed either free of charge or under a cost-recovery system to sex workers, young people, people living with HIV/AIDS (PWAs) and to other interested persons.

Advice and Support

Advisory services are available for individuals, their families, children and the community to enable them to overcome the psychological, emotional, social, financial and medical consequences of infection. Counselling is also provided to families that have lost one of their members, and to the community to strengthen attitudes that generate changes in behaviour and foster greater willingness to discuss issues relating to sex and AIDS. Advice is also given on voluntary screening; this often enables couples to take a decision before marrying, before having children, or on a whole range of matters that vary from one person to another.

Home Care

This is an extension of primary health care and an integral part of the continuity of care. CBOs and families evaluate the needs of PWAs and provide patients with supplements of food and drugs, and with spiritual and moral support to the best of their ability.

Support for Orphans

Community organizations support children who have been orphaned by AIDS. Existing programmes encourage the maintenance of orphans in their families and community. Various types of support are provided, including food, clothing, and payment of school fees, medical and legal expenses. Organizations encourage families and the community to share the support and care provided for children.

Advocacy

Community organizations are involved in advocacy on behalf of the interests of PWAs in the community. Here are some examples of advocacy goals and activities:

· firmer and deeper commitment by governments;

· greater mobilization and better distribution of human, financial and material resources;

· development of a favourable environment free from discrimination, stigmatization and denial;

· improved access to care, treatment, and to free and anonymous screening services;

· measures to protect the rights of children, support for orphans, and the need for legislation to protect children’s rights;

· measures to protect the rights of women, and in particular to foster greater independence for women and the right to make choices about their sexuality; and

· a greater research effort to produce an effective and accessible vaccine.

Networking and Information Sharing: The Example of AfriCASO

AfriCASO is a network of African non-governmental organizations, community-based organizations, associations of people living with HIV/AIDS, and local communities engaged in efforts to control HIV/AIDS in Africa. Through information exchange, advocacy and representation, the network seeks to enhance the efforts of these groups to reduce HIV/AIDS transmission, provide PWAs with care and support, and minimize the impact of HIV/AIDS on individuals, families and the community.

The flexibility and adaptability of community-based organizations, as well as their ability to form and maintain partnerships and influence politicians and government decisions, have facilitated their action. Where states are weak, community organizations are at the forefront of efforts to mobilize the different actors and advocacy.

The efforts of community organizations will be complete and durable only if they are supported by governments, international organizations and agencies, religious organizations and the private sector.

NAP+: The People’s Own Voice, by Milly Katana

“The voices are crying out in the wilderness of mother Africa.”

- P.B. Lutaaya, musician and the first Ugandan
to go public about his seropositive status in 1989

Every day someone insists, “We are not statistics, we are human beings despite the abstract numbers that are attached to our lives.” It was statements like these that prompted 50 representatives from 13 African countries to meet in December 1994 at the Paris AIDS Summit and chart a plan to unify the response of people living with the disease in Africa. Their mission: to improve their quality of life by forming and strengthening networks and associations of people living with HIV/AIDS (PWAs).

Since 1994, PWAs have taken up the challenge of living in communities where they face varying degrees of hostility. Under the framework of NAP+, the Network of PWA, a few open campaigners around the region have laboured to support persons in other countries to form associations and networks, which work as a stepping-stone for achieving a unified voice. NAP+ works through the four sub-regional groupings in Southern, Eastern, Western and Central Africa. These sub-regional groups support the central secretariat based in Nairobi (Kenya) in coordinating efforts of the network. However the strongest links are still the country networks or associations, and individuals in countries where no networks or associations have yet been established. The country networks and associations maintain autonomy to implement activities that respond to the needs of the local membership and communities.

People living with HIV/AIDS who come together in networks share their confidentiality about a common and highly stigmatized disease. They also share the instinct of survival against this human tragedy. The binding force across the region has been a common cause, vision, mission, objective and strategy. Once confidentiality has been shared to a significant degree, a strong PWA movement can begin to sweep across countries and focus the attention of communities and policy makers on their need for improved quality life.

NAP+ has encouraged its members to live as role models and to give HIV/AIDS a human face. This has a far-reaching impact on prevention. In the first place, PWAs themselves appreciate the need for self-preservation, thus preventing any further spread of HIV in communities. Secondly, PWAs working together gives hope to other community members who may be infected with HIV but are not sure of steps to take in order to stay alive. Similarly, other members of the community who may not see themselves as vulnerable may reconsider their position, and are encouraged to adopt positive behaviours. Role modeling is done at both country and regional level. In countries where PWAs have publicly been on the frontline of prevention, efforts are now paying off. For example, Uganda is registering a downward trend in new infections. This is particularly attributed to, among other factors, the efforts of PWAs who have engaged in country-wide mobilization efforts.

On a regional level, NAP+ has sent out seropositive persons to other countries since 1997 to raise the profile of PWAs and of AIDS in general. The objective of the missions is to help set up support groups and strengthen PWA networks, as well as build the capacity of PWAs to participate in national efforts against the disease. During the missions, HIV-positive “ambassadors” address a cross-section of people including PWAs themselves, the media, health workers, students, community groups, the armed forces and other uniformed services, and policy makers. We have seen the formation of associations of PWAs in countries such as Nigeria, where in early 1997 when the first mission was sent there, no person living with HIV/AIDS could be “seen.” At that time members of the mission were barred from entering a television studio in Lagos for fear of “leaving” HIV in the station’s equipment. Similarly, today there are support groups - in Ghana, Botswana and Ethiopia - where none existed before the ambassadors were dispatched there. Today we have a network of PWAs in Kenya, after a visit of the ambassadors. A number of other countries have networks as well.

People living with HIV/AIDS across Africa have benefited from the efforts of NAP+ in different ways. First, through supporting the formation and strengthening of support groups and networks, PWAs realize that there is still something they can control. In many instances people living with HIV were portrayed, and may continue to be portrayed, as a helpless lot only awaiting their fate. When support groups or networks are created, members share their experiences of living with the disease, discuss their challenges and set priorities to enhance their survival. It is not until one finds a similar “species” that he or she can realize there is hope for tomorrow, and he or she needs to take some action concerning their life.

PWAs, through their networks and associations, have formed strong lobbying and advocacy groups to improve their quality of life. Such a movement is sweeping across sub-Saharan Africa, from South Africa to Mali, from Cameroon to Ethiopia. The issues under consideration range from family stigma and discrimination to access to care and treatment. There are considerable achievements in this area, although a lot of work still needs to be done. It is common to hear of cases of widowed wives being thrown out of their homes by in-laws for the “crime” of infecting their son or brother with the dreaded disease. As we fight community stigma, a new wave of institutionalized stigma and discrimination is unfolding. This is true even in countries such as Uganda, which was thought to be well on the road to overcoming AIDS-related stigma and discrimination.

Many community organizations have sprung up to answer the pleas of PWAs in improving care and treatment. Groups of health workers are also working hard to break down some of the obstacles that have hindered the improvement of quality of care. Today some countries have access to generic drugs, which are being dispensed to patients at much lower cost than patented drugs but remain priced beyond the reach of many PWAs. As a result, a few lives can now be saved. Such achievements have been possible because of pressure exerted by associations and networks of PWAs.

Long before the Greater Involvement of People Living with HIV/AIDS (GIPA) Principle was launched, people living with the disease, mobilized under the framework of NAP+, saw the importance of including PWAs in national efforts to fight it. At the Paris AIDS Summit 42 heads of state launched a global effort to “protect and promote the rights of individuals, in particular those living and vulnerable to HIV/AIDS, and involve them in the formulation and implementation of public policies, ensure equal protection under the law for persons living with HIV/AIDS with regard to the access to health care, employment, travel, housing and social welfare.”1 NAP+ fully embraced this effort and has attempted to operationalize it at various levels.

Protection and promotion of the rights of individuals living with HIV/AIDS and affected families is high on the regional agenda of NAP+ and of country networks. NAP+ and its affiliates go to great lengths to give AIDS a human face and remind people both within Africa and out-side that “we are the people; people living with HIV need and deserve all the rights accorded to other citizens, as there is no crime in being infected with HIV/AIDS.”

It is the normal process of living that exposes an individual or their family to AIDS. Fighting the disease in Africa has been challenging given its history. It was first known in Africa, and especially in the Great Lakes region, as a disease associated with witchcraft and therefore not everybody’s business. Later, people on the continent were made to believe that it was a homosexually transmitted disease; since homosexuality is not a widespread practice in many African countries, it was indeed not “our” business. When the disease fully solidified its grip on African communities as a heterosexually transmitted disease, denial caused us to believe that it was a problem for commercial sex workers and not wives, husbands, daughters, sons, grandchildren, fathers, mothers, sisters, brothers and neighbours.

In a bid to raise the profile of PWAs as responsible citizens who can make a positive contribution to their national development, NAP+ supports the formation of networks or associations that often act as sanctuaries to give hope and “rejuvenate” life among PWAs. Within these networks, members inform and train each other on issues including information sharing, developments about the disease, access to care and treatment, nutrition, legal and human rights issues, media relations, communication skills, networking, economic sustainability and small-scale business management, and children’s issues. This rejuvenation process helps individual members regain their self-esteem as a people with a mission and “a role to play.” They are propelled into involvement in the community and into the national response against HIV as people who want and need to help. They are also ready to reach out to others who are infected and share with them the burden of living with HIV/AIDS.

Over the years members of networks who feel confident enough to go public about their seropositive status have been effective catalysts in campaigns for prevention and behaviour change. They have also taken upon themselves the challenge of reminding policy makers of the need to accord PWAs equal support and to improve their health care.

In an effort to meaningfully involve PWAs in all issues affecting their lives, NAP+ and its affiliate national networks and associations have encouraged their members to train as AIDS and family counsellors, clinical officers, organizational development experts, professional social workers, journalists, managers, teachers and nurses.

Networks also encourage members who are professionals to excel in their own professions in order to help reduce the level of marginalization of PWAs in communities. This has been a particularly difficult issue for NAP+ because of a number of historical and conceptual problems. AIDS was first considered a disease of the marginalized, not of professionals and experts. It is indeed low-level cadres who first spoke out about their HIV status. However, some reasonable success has been attained, with many PWAs now working as counsellors, nurses and social workers in community establishments across Africa.

Seven years after its establishment, NAP+ continues to call for the involvement of PWAs in shaping and implementing the policies that affect them. After the early years of denial, the disease moved into the academic arena. Elaborate papers and documents written in a wonderful scholarly style lacked one detail: the faces and voices of the vulnerable. Policies are elaborated and perfected at the expense of people’s lives. Drug prices are “intellectualized” while the sons and daughters of Africa are being wiped out by a disease that could be contained. Only a person directly affected and who is given the opportunity to be part of the decision-making process can help reverse these trends.

This has been one of the most difficult tasks for seropositive people in Africa. Some parts of the community and many policy makers are still convinced that PWAs only need to receive services and have no business deciding on who receives them and when, where, how or why. This, coupled with the inferiority complex instilled in many PWAs, makes the situation even more complex. Often, PWAs find it difficult to be assertive. However some success is being registered today, with PWAs incorporated into National AIDS Control Programmes in countries such as Kenya, Zimbabwe and Cameroon. Elsewhere, they are involved in designing access to care programmes and in managing community initiatives that respond to AIDS. One major issue that needs to be addressed today is how to overcome token involvement.

Because networking is a new phenomenon of social development and largely depends on communication, it contains a significant cost-saving component. Much of the work of NAP+ at regional level is carried out through e-mail, fax and post and performed by teams of dedicated volunteers who only need minimum facilitation do the bulk of the work in countries. Members across the sub-Saharan region also have support from community-based organizations affiliated with the African Council of AIDS Service Organizations (AfriCASO). Together, these factors have enabled NAP+ to survive in what would have been a very difficult and resource-strapped environment. Volunteers are driven by a common desire to improve the quality of life of people living with HIV/AIDS all over the world.

The volunteer nature of the work has taken its toll on the lives of members. We have lost a number of gallant fighters who dedicated their lives to the service of others. This is because the work itself is enormous, and given declining immunity over the years, even the strongest life wanes. Secondly, the stress of seeing one’s own group shrink and die raises fears among survivors. However, one of the most taxing issues has been the negative reaction that continues to exist in communities despite everyone’s best efforts. Our children are the first targets of community discrimination and harassment. In schools, they are labelled as children of the dying. It is also difficult for spouses and particularly for ageing parents of public members of NAP+. Each day they are reminded that we are about to die! At every funeral, signals are sent to them that their own is next in the queue.

We spent years informing, educating and lobbying communities and policy makers to tell them that we are not victims, deserve the same human rights accorded to all citizens, and have a contribution to make in fighting the disease. Then one day an African head of state told the world that PWAs have a self-inflicted disease, so countries should not victimize the rest of their citizens in the name of state subsidies to drugs! After mourning and burying our friends, after raising voices, shouting, screaming and marching in streets and villages, another head of state questioned whether HIV causes AIDS. Today, only a handful of the original fighters are left in active combat. They have had enough. But as all other armies with a target to hit, they have recruited more able-bodied men and women to carry on the battle.

Over the next three years, NAP+ aims to become self-sustaining by enhancing the capacity of its regional board members to plan and man-age their affairs. Strengthening existing networks also remains high on the agenda of NAP+; some country networks need to be revitalized. Some members need to be reminded that occasionally battles are lost, but soon the war will be won. Others need support to form a unified voice for PWAs in their countries since many are still scattered in small support groups, or have none at all.

Notes

1. UNAIDS (1999). From Principle to Practice: Greater Involvement of People Living With or Affected by HIV/AIDS (GIPA). UNAIDS: Geneva.

Reducing African Women’s Vulnerability to HIV/AIDS, by Salimata Niang

Every country in Africa is faced with HIV/AIDS, and the situation is all the more cause for concern because the main transmission route is heterosexual. The measures adopted to control the epidemic have not prevented its rapid spread.

The extreme vulnerability of women, particularly African women, to sexually transmitted infections (STI) and HIV/AIDS is well-known. In Senegal, as in other African countries, the ratio of the number of women infected to the number of men has changed rapidly: in 1986, one woman was infected for every six men (a ratio of six to one); in 1990, one woman was infected for every three men (three to one); in 1997, one woman was infected for every two men (two to one); and in 1999, between 12 and 13 women were infected for every ten men.

Also, the number of HIV-infected women is often underestimated. Although the virus reduces women’s fecundity by approximately 20%, pregnant women have always been used as a reference to measure the prevalence rate. So while the rate may be accurate for pregnant women, it does not reflect the situation of women in general.

For biological, socio-cultural and economic reasons, African women are most vulnerable to the disease. Biological vulnerability is common to all women; they carry a double handicap because they are the receptive sexual partner and have a large area of mucous membrane that is exposed during sexual relations. These factors put them at a considerable disadvantage, since the sperm of infected males has a far higher concentration of HIV than vaginal fluid. In addition, STIs such as trichomonosis and gonorrhoea may develop unnoticed or be poorly treated (or simply ignored). However, it has been demonstrated that the presence of STIs in women is responsible for a four-fold increase in the risk of HIV infection. Women’s biological vulnerability is exacerbated in adolescent girls, whose immature vaginal mucous membrane is damaged by sexual rites, and practices and violence such as rape, infibulation or forced marriage at a young age.

In the same connection African women frequently suffer from haemorrhagic complications during childbirth and require blood transfusions. In a situation of poverty where budgetary restrictions severely affect health and other social services, it is impossible to guarantee the screening of blood transfusions.

However, the decisive factor in the vulnerability of women is their social, cultural and economic condition. Rates of heterosexual HIV transmission in Africa are increased dramatically by the practice, lawful or otherwise, of taking several sexual partners. Some African women play an active role in this through official, clandestine or disguised prostitution, according to several researchers.

Associations aimed at mobilizing women in the response to AIDS have been set up across the continent. One example is the Society for Women and AIDS in Africa (SWAA), established in 1988 in Senegal by a group of African women concerned about the specific problems they faced as a result of the epidemic. SWAA is a pan-African organization with 30 national branches and provides a rallying point where women can be heard and address their own concerns about the disease. Besides education and care for women and children infected or affected by HIV/AIDS, the society focuses on access to antiretroviral drugs, especially as a means of preventing mother-to-child transmission. It also attempts to persuade African decision makers to become more involved and improve women’s access to education, condoms, antimicrobial drugs, and care and support.

It is well-known that women are the victims of gender inequality including lowered access to education and paid work, as well as to social and health facilities. African men’s relative access to social and economic resources keeps them in a dominant social position and gives them the opportunity to impose their views and determine women’s behaviour, particularly sexual.

Analysis of the African social and cultural context shows that women as a rule are victims. According to some researchers, women at risk of HIV/AIDS in Africa share one thing: their lack of “empowerment.” Researchers describe married women as passive victims because they risk contracting STIs or HIV from their husbands. Epidemiological studies in Senegal and Rwanda undertaken in 1991 show that women became infected after sexual contact with their immigrant husbands. When questioned, husbands admitted to several sexual partners while wives stated they had been monogamous. Women living alone or away from their husbands are at greatest risk: often, men treat them as casual sexual partners while they themselves frequently change sexual partners.

The same social, cultural and economic environment is responsible for adolescent girls and young women marrying at an early age or having sexual relations with older men, who are more likely to carry the virus. An epidemiological study has confirmed that older men are the primary cause of infection among adolescent girls and young women.

To sum up, men exercise authentic power over women who are usually in no position to exert control over their sexuality or fecundity. They may be helpless to protect their health, whether by persuading men to use a condom or by insisting they be faithful.

The Consequences of Infection for Women

One of the main consequences facing infected women of childbearing age is the transmission of HIV to their children, which occurs in 20% to 35% of cases. In addition, infection of African women at an early age and inadequate treatment are often responsible for premature deaths and an increase in the orphan population. According to the Joint United Nations Programme on HIV/AIDS (UNAIDS), some 13.2 million children worldwide - 90% of whom live in Africa - have lost their mother and sometimes their father because of AIDS.

HIV/AIDS also undermines women’s traditional role as caregivers. Women are frequently responsible for young children or for their partner, who may also be infected. Even when they reach old age, women continue to care for children and ill relatives. With AIDS in Africa primarily affecting the 15-49 age group, grandmothers often find themselves caring for their grandchildren once their own children have died.

At the same time, the benefits of science have been slow in coming to Africa. For example, on the continent 90% people living with HIV or AIDS are not even aware they are infected. As a result, they take no precautions to prevent spreading HIV. Moreover, many countries lack a systematic referral system to provide HIV carriers with psychological and emotional support, and equally few have access to antiretroviral drugs. With lack of drugs and proper care, morbidity and mortality remain high among African patients. In contrast, in developed countries mortality has fallen by two-thirds due to new drugs, and care and support mechanisms.

In addition to the male condom, one form of protection that is available though not widespread is the female condom. It is a first step toward emancipating women and enabling them to protect themselves against both unwanted pregnancy and sexually transmitted infections. It is also suitable for HIV-negative women who are pregnant or breastfeeding but want protection against HIV infection and eventual mother-to-child transmission of the virus. Not only does the female condom strengthen protection against infection, it empowers women. As one user has said, “I showed the female condom to my husband and talked to him at length to persuade him to accept it...in any case, I would have used it without his knowledge.”

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