NGO and Community Responses to HIV/AIDS

Contributions by Leiliane M’Boa, Aristide Kacou, Mariette Wandandi, Samuel Lijalem Hassan, Victor Kamanga, Dora Ofobrukweta, Regina Clement Akpan, Anne Fiedler and Esther Guzha

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

Lumière 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 Côte d’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). Lumière 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, Lumière 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 Lumière 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 persons 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 pre-test 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 overburdened 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 straightforward 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 widespread 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, understood 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 caregiver 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. 

Voices from Africa no. 10