HIV and AIDS: The Global Inter-Connection

I CAN SEE A LIGHT AT THE END OF THE TUNNEL

By Noerine Kaleeba

My personal involvement with HIV began that June day in 1986 when the virus entered my front door. One year later the disease took my husband, leaving my four daughters and I to struggle with the social ills of this epidemic. Since founding TASO (The AIDS Support Organization) after the death of my husband, I have been exposed to the numerous questions HIV and AIDS force our world to confront. I have also experienced the joy and satisfaction of watching the Ugandan people in particular, and Africans in general, move away from paralytic shock to organized positive response to the disease.

My first encounter with a person living with AIDS was very brief and promptly dismissed. Today the experience is very vivid in my mind. I was at Mulago Hospital demonstrating the practical techniques for transferring a paraplegic from a bed to a wheelchair. A young man who could not have been more than thirty years old gave permission for my students to learn from him. His medical notes indicated that he had paraplegia due to Immunosuppression Syndrome, but I was unfamiliar with the diagnosis. I later spoke with the ward nurse regarding the scheduling of the demonstration. She then warned me saying "I wouldn't touch him if I were you. He has AIDS. We don't touch him, we only show his mother what to do." I cancelled the class and arranged for another patient volunteer without ever giving him an explanation. I did not think of him again until my husband was diagnosed with AIDS. To this day I continue to wonder what ever happened to him. I wonder if he and his mother had anyone to support them and help to carry their burden. I suppose I will never know.

TASO began as an organization which would provide counselling and support facilities for people with HIV infection, and preventive counselling for families and communities. Our aim was to impress upon people in the community, especially at the grassroots level, that the person who is HIV positive or diagnosed with AIDS is not dangerous. At the time that TASO became active, HIV was becoming a reality throughout the world. People were beginning to react and to initiate responses to the epidemic. Many of these initiatives were focused on prevention which we at TASO believe is a good approach to an incurable disease.

Unfortunately the public health messages at the time were very negative, associating HIV and AIDS to death and low morals. Nothing positive was being offered to those who had already been diagnosed with HIV and thus these messages only served to further stigmatize and torment them. This is why TASO adopted the slogan "Living Positively with AIDS." We called on everyone in our society to be compassionate and supportive towards those of us who are living with HIV, and to join us in a collective fight against the disease.

Today TASO is an NGO that offers counselling services, outpatient clinical care, and homecare for people with HIV infection and AIDS. We also offer awareness and sensitization programmes for a cross-section of the community, from medical personnel and political leaders to village community workers.

For four years we have intensified our efforts to educate people to the fact that HIV is an infection and it is a new dimension to our lives. Increasingly, people are having personal experiences with HIV and AIDS through an affected family member or friend. And they are beginning to realize that you do not catch HIV by sitting next to someone who has it. In areas where we started TASO community programmes, villagers are beginning to accept that HIV is within their midst.

In Uganda, when someone is ill in the village, all the villagers come to express their sympathy. With HIV people stopped doing this because of fear and because they did not wish to offend by saying the wrong thing. The villagers now ask, "How do I visit my neighbor and begin to discuss HIV?" I also believe there is a feeling similar to what the late Philly Bongoley Lutaaya expressed in his song: "Today it's me, tomorrow it's someone else." People are saying, "If I am not kind, if I do not sympathize and get involved with my neighbor, what will happen to me when my turn comes?" So increasingly, people living with HIV and AIDS are being supported and cared for; many more are coming out and saying, "I have HIV."

In TASO there is a group of about thirty people living with AIDS who are willing to discuss their problems openly on the radio and television. Whenever I speak publicly, two or three of them accompany me because people will not relate to what you are saying until they have actually seen a person who is living with the disease. In the beginning, people with HIV and AIDS were seen as dying, but we emphasize life rather than death. It is the quality rather than the quantity of life that is important.

In many countries the level of HIV infection is high and we cannot ignore people who are HIV infected anymore, the way we did when we were first exposed to this virus. The Uganda government's approach to this disease has had to change as well. For example, in 1986 and 1987 there were discussions about mandatory testing and isolation of people who are HIV positive. Eventually that talk stopped because the reality of our situation is worse than was previously thought. If one tested every employee at a major institution like the Central Bank and found that three quarters of them were infected, would you close the bank? It became quite clear that strategies such as mandatory testing would be ineffective and expensive, and would provide little in the form of alternatives or improvements.

Only a comprehensive prevention programme of care, support, and counselling will work in our society. This is even more evident if you examine the nature of HIV. People do not know they are positive until long after they have become infected. I believe that communities are fed up with HIV prevention messages that do not offer concrete follow-up. When you give a person in the village counselling and support, you are beginning to sensitize the community to the fact that a person who has contracted HIV is not guilty of any offense. HIV is a disease that thrives on secrecy and the only way we can fight it is to do so in public, enlisting as many members of our communities as possible.

The combined strategy we are employing here in Uganda is potentially useful for other countries as well. First we started with awareness. There are still areas of our country where people are unaware of many aspects of the virus. They have heard the HIV drum warnings on the radio and the slogans like "Love carefully." However, the awareness that they need begins with much needed question-and-answer sessions that encourage a person to understand what HIV and AIDS are about. After you have accomplished that, then you offer counselling, testing, care, and support. A combination of all these approaches is what is needed.

This strategy does work. Villages surrounding Kampala and as far away as Kumi, in the eastern region, are recognizing the need for a collective effort. Recently, a delegation of elders from Kumi asked us to start a community programme for them. Almost every week we receive teams from other countries, for example, Botswana and Zambia, who are trying to understand what we are doing. These are some of the many areas TASO is involved in that have arisen as the organization has grown and adapted to the needs of our communities. One of the advantages that NGOs have, unlike the Uganda AIDS Commission, is that we can plan as we go along and we are not afraid of making mistakes. If we had planned everything in advance, TASO would never have been started.

HIV is only caught in specific ways. The fact that TASO teams go into the homes of people who are living with HIV and come out intact sensitizes the community to concentrate on the most important mode of HIV transmission: sexual contact.

We offer counselling about behavioural change, especially for those of us who are infected, but we also keep in mind that this process does not happen overnight. We do know that this counselling is producing positive outcomes when we look at the group of people living with HIV and AIDS in TASO. Even if they do not tell me they have changed their behaviour, the fact that they have spoken publicly on radio and television about their HIV infection is proof of change, because now no one who is not HIV positive is going to have sex with them. So people are making important and responsible decisions about their lives.

We are also seeing a dramatic reduction in pregnancies among young infected women. This is because our counselling is targeted toward assisting people in making conscious decisions about their lives. In Africa, it is a real behavioural change for a young woman of twenty-four-plus to decide not to have a child.

In my experience the people we support at TASO have generally not indulged in very risky behaviour. What they have done is find a partner who is also HIV positive. They are not having multiple sex partners. A person with HIV has the right to have sex. But it is important to impress upon people that they are responsible for not passing their infection on to someone else. Some of the questions we address are: "When you are with your husband, what do you do?" And, "What do you do when you do not have a partner?"

Our counselling also emphasizes the rights and responsibilities of people who are living with HIV. Simply stated: "If I have a right to live, then I also have the responsibility to let others live." In order to live with HIV you must first treat opportunistic infections, and second, you must try to boost your immunity. We aim first to reassure them that they are not dying and that they can live with HIV and AIDS. After just the first counselling session they feel much better.

It is very important that those of us who are infected understand that people care for them. Otherwise, if they feel they are being scorned and are considered dangerous, their sense of responsibility towards others erodes, and they become angry. This is why we encourage a more caring attitude in public.

There are indications that behaviour is also beginning to change among those who are not infected, though this information is mostly self-reported, people are saying, "I know HIV is out there and I am being careful." In 1990 we opened up the first voluntary and anonymous HIV testing and counselling centre in sub-Saharan Africa. We were unsure that anyone would utilize the facility but today we are overwhelmed. The turn-out is very high, especially of young people.

I was exposed to HIV because my husband was infected. My first test was negative and I was encouraged to be tested again after six months. I have not yet gathered the courage to take a second test. Whether the results of an HIV test are positive or negative we must conduct ourselves in a manner that avoids becoming infected or spreading infection. For people to have the fortitude to walk through the door and get tested and counseled, they must have made a decision to change their lives. One thing you do know is that once you walk out of that door after being tested, you will never, ever again have unprotected sex.

The responsibility of saving lives is an individual one. The best TASO can do as an organization is to give as much information and counselling as we can through various channels including discussion, radio, and television. Now we are providing information through the mouth of the person living with HIV. But it is up to the individual; you are the only person who can save yourself. Sex is an activity that takes place behind closed doors.

For many of us, changing behaviour is a gradual process. Yes, we are hearing about behaviour change among men. Polygamy is a trait in our society and it will take intensive programmes to help men to adapt. There are many traditional practices that are in direct confrontation with the messages we are giving. We must educate people to understand that what they lose by ceasing a traditional practice is less devastating than the risk they run of contracting HIV infection. This process will take time to implement.

Changing behaviour is not very difficult; keeping it changed is. We should motivate people rather than threaten them. We must constantly strive to develop positive messages. As people get tired of one message, throw in something new, something different, to keep up their morale.

When addressing women, I ask them to reward men with love rather than threatening them. Besides, how many women in our culture can afford to be that assertive. Women, like myself, who have an income can pick and choose. But then there are those like my sister in the village who live at the other end of the spectrum. I have discussed HIV with my sister and given her condoms. She has never been able to show them to her husband because she is afraid she will be thrown out of the home. In our culture, once a woman is married she must have sex with her husband whenever he demands it. She cannot negotiate for safer sex without risking her very existence.

I am also very concerned about the vulnerability of my daughters and other young women. Older men are pursuing sexual relations with girls and young women, more than ever before, as a means to prevent contracting HIV. I worry for these young girls who are increasingly becoming victims of rape and sexual abuse, and who cannot protect themselves from HIV and other sexually transmitted infections (STIs) in these circumstances.

I have become involved in empowering women to defend themselves against HIV. Women are beginning to demand new laws that protect their rights against abusive husbands and traditional practices that relegate them to an inferior social status. But passing laws is not enough, women must be taught how to use these laws to defend themselves. Family members, elders, and the community must also support these laws.

There are many ways to organize different members of our society. Official programmes, like educating a gathering of one hundred people at the local elected councils, have their role, but by themselves do not create awareness. What is useful is to train one person from their midst and send that person back with some incentive to spread the relevant information. It would be cheaper than organizing rallies and paying the allowances of ministry of health personnel. These educators would be willing to work for 2,000 to 3,000 shillings per month, compared with the monthly government salary of 12,000 shillings.

In every African village there is a storyteller, a person to whom the villagers can relate. Train that person, supply them with a uniform or some form of identity, and you will see a change. You may also train groups of people who are already employed in community programmes or local committees, and give them some incentive to continue the work. Eventually this type of programme could be employed throughout the country.

When I think of the impact that HIV is going to have on the coming generations I become very emotional. I truly do not have a vision of what will happen. In Uganda death and dying are issues that affect children directly. There are many children who are parentless. This is the result of our political situation as well as the epidemic. Though we lost our home when my husband died, my own children have not suffered as much materially, but emotionally they are devastated. They not only lost a father to HIV but they carry the stigma of the circumstances of his death. My daughters are not like other children who are parentless due to HIV; the others do not have a mother who goes around talking about HIV every day!

Most parentless children lose both parents to HIV within a very short period of time. They cannot go to school or get enough to eat. They are going to be emotionally and socially different from other children of their age groups. Recently eighteen children came to TASO from Mbale (in the eastern region) where they were living in foster care. They had already lost so much time from their lives. All the plans World Vision, TASO, and other organizations are making to support them are being implemented too slowly. These children are growing older and they cannot switch off their growth until we finish planning.

One of the early discussions that we have with people living with HIV is about what will happen to their children. We impress upon them that they have a fatal illness, and that they must begin planning for the future to ensure their children's survival.

At TASO we recently began a pilot project to create income-generating activities for our patients. This programme involves relatives who sign a contract obligating them to be responsible for one's interests after death. We are conducting this on a small scale because these activities can be complicated; many people use the money to meet their immediate needs rather than save it for the future. We must investigate more efficient types of income-generating to assist surviving relatives who are burdened with unplanned HIV-related responsibilities.

In Africa the HIV epidemic appears insurmountable because it is compounded by so many other issues. The north/south imbalance is highlighted by HIV. Today our hospitals still lack medicine for preventable diseases. We know that one of the cofactors of HIV transmission is sexually transmitted infections but we still do not have a comprehensive STI control programme in Uganda. Another area of exposure to HIV that is controllable is the blood supply. Our blood bank is inadequately screened, and this too can be accomplished with adequate funding.

Despite all the problems we face, when I look at the future of HIV in Uganda through the eyes of someone who works with people who are living with HIV and AIDS, I see a ray of light at the end of the tunnel. The initial fear of rejection that kept so many of us in hiding, and therefore made it possible to infect others, is now disappearing. We no longer have to fight this virus in isolation. Each one of us can join together to ensure that our hopes for a world without HIV become a reality.

Biographical note

Noerine Kaleeba is the director of The AIDS Support Organization (TASO), the first organized community response to the HIV epidemic in Uganda. TASO now provides over 6,000 people living with HIV or AIDS, and their families, with counselling, information, medical and nursing care, and material assistance.