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 outside 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 manage 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. 

Voices from Africa no. 10