Testimonies From HIV/AIDS Treatment Patients in Arua, Uganda

In Arua, MSF now provides medical care for nearly 3,000 people living with HIV/AIDS. In July 2004, MSF collected testimonies from patients undergoing treatment about their experiences living with HIV/AIDS before and since receiving treatment.

Rose Atibuni

On antiretroviral (ARV) treatment for 27 months
Chairperson and Founder of the National Community of Women Living with HIV/AIDS (NACWOLA) in Arua

I am a secondary school teacher and so was my husband. Sometime in 1990, he started to fall sick and by 1991 his health was really deteriorating, but we didn't understand why. He moved to Arua from Koboko where we were both teaching but it didn't help. He started getting rashes, like people who have leprosy here, and he got much sicker. I had been away on a course and I knew the signs and symptoms of AIDS. I said that he should get tested but he was very hurt. He said, "You are my wife, why do you come to me with such suspicion." But in his heart he knew he had AIDS.

In 1991, he went and got tested alone but he didn't know how to tell me. So he stayed quiet for months. In 1991, I also went alone and got tested by myself, and I found out I was positive. I had a baby that wasn't even 2 years old, so I asked if he could be tested and he was negative.

I told my husband, "Now we have to make a new beginning." He was already bedridden and doctors said he didn't have long to live. I gave myself six months so I thought I should tell my parents.

At that time the medical superintendent was a family friend and he said that he would do everything possible to take care of me so I calmed down a bit, and I thought that I still had my job and my husband was still getting paid. But everyone was talking about us.

Stigma was quite high at that time and I felt very insecure in my job. As a teacher I realized I had to do something. I thought my job was not safe because children were skipping my classes and other teachers were not as close to me as they were before. I was sidelined and isolated. So I went to see the headmaster of the school and I told him that my job is the only thing I am holding onto. I became very aggressive to protect myself and my job. And the headmaster did what I asked - he gave me classes that were comfortable with me, and I got stronger knowing the headmaster supported me. I started telling the female teachers about my experience. The other teachers said that they admired me and took courage from me, and I realized that this was an ace in my hand.

I started going to the hospital a lot and talking to the medical superintendent. He would tell me who he thought might be having problems and I would go and see them. With my skills as a teacher I could get through and talk to them.

By 1992, my husband had died and I had more time to work and organize. I worked with a group of care providers, families, and people living with HIV/AIDS to form WAFSA (People with AIDS Family Support Association). But there was still a gap and we heard about the National Community of Women Living with HIV/AIDS (NACWOLA) in Kampala and decided to open a branch here in Arua. We went to each other's homes to help the women who were isolated by their families. We talked to the families about HIV/AIDS and tried to educate them.

The most important things were the home visits and advocacy for better care. We got through to the district and they supported us - for home visits and going to areas where there was little information to tell people about HIV/AIDS. But we were stepping on the toes of men because many women were joining but their husbands were also exposed and they weren't disclosing their status.

In this country there is a lot of inequity in services especially between the North and South. But we have gained a lot. We thank MSF very much for coming to this rural area in the North with free treatment because most services are concentrated in Kampala and the South. It has boosted us a lot.

If it weren't for ARVs so that people could see the benefit of being open, we would not have come this far. Now people form their own support groups, which is really due to free treatment because otherwise what is the benefit of being open.

Testimony taken on July 14, 2004

Donna Aseni

On antiretrovirals (ARVs) for 20 months
General Secretary of NACWOLA (National Community of Women Living with HIV/AIDS)

I started guessing that I had HIV from the signs and symptoms. My husband was a magistrate in another district. He was laid off and he just thought it was too much for him. He was used to a lot of money and he didn't know how to do anything else. He came home to Arua and tried to dig some but he couldn't. I told him, let's go for treatment. Counselors came to talk to him, but he just couldn't admit it and get tested.

I wanted to go to school because my salary was too low and he wasn't working now, but school was residential so I had to leave him. It hurt me to do it, but I would come home and check on him. He was in the hospital and I was supposed to enter exams so I wanted his sister to come and stay with him, but he said, "Don't worry you will go home tomorrow." He knew he was going to die that day. I brought the children to greet him. Once he saw them, he started talking about wanting to have courage and I told him he did and he died. I wanted to take the test then, but the counselor told me, "No, go back to school and relax."

My husband was clinically diagnosed with AIDS and people at school knew about his death. I knew they were pointing at me and talking about me, so even though I hadn't had a test, I decided to come out publicly and tell people that I was HIV positive. After I finished my exams, I came back to get tested and even though I was just confirming my status it still hurt to see, yes, I am positive.

Already there was a local support group for families and NACWOLA was on the ground. We met together and visited each one another in our home. We got some exposure and we got some support. At first our office was in the hospital, but we were a growing family and so we bought land and laid bricks with our children for our home. We continued meeting and we had the memory project to prepare us to tell our children about everything. This was one of the major eye openers that made us start our center to help the mothers communicate with the children and tell them what was in their hearts. The project was started to help our children cope with the loss of their parents because we all thought that we would die quickly, but we are still alive many years later.

Now we have a daycare so that mothers can come and share their experiences and make crafts so that there is some income in their home and they learn business skills. We focus on the children so that there is time for them to just play.

When the ARVs came in, a committee was set up to select people for therapy. There were 20 people a month added based on CD4 count. We were coping well.

Then I went from 60 kilos to 55 kilos and I told the doctor I was feeling very weak. He told me to get another CD4 count done and I only had 67 cells. They started me on ARVs right away. I felt even worse though and I thought the medicine was killing me. Rose came and helped me and supported me, and when I refused the medicine, the nurse told Rose and she came to see me. They realized that I had severe anemia and then I got pneumonia from lying down to recover. I kept getting worse and they realized that I had TB that wasn't diagnosed earlier, and once I started getting TB treatment I started to feel better. I got better because I was near the hospital and they were always checking on me. But if I hadn't been nearby or wasn't someone that speaks out, I would have died.

When I started treatment I had 3 big pills and every time I took them I would throw them up. Now I just have to take one pill and it is much better. I don't have side effects and I feel better.

I decided I had to leave my home, so I came to the office and the hospital and coming out helped me get better. I was talking to people so that I could get energy from them. Now I've started teaching again and feel much better.

Testimony taken on July 14, 2004

Jack Kokole

On antiretroviral (ARV) treatment for 2 years; one of the first 7 patients enrolled in the Arua Hospital AIDS Project

I am 55 years old, employed as a town agent with Arua Municipality. I live positively with HIV/AIDS and I have taken ARVs for 2 years.

In 1999, I developed a cough. I listened to the radio and heard the signs and symptoms of AIDS and I knew that I had them. I went to the hospital and said I wanted to be tested.

They checked my sputum, it was negative. They checked again - 3 times - all negative. After going to several hospitals, there was a doctor at Arua hospital who put me on TB drugs, which I took for 8 months, never missing a pill. I started feeling better but then pneumonia caught me rough all of the time - every time it was cold out. Then the woman I was living with, she got sick. I was too weak to go see her at the hospital, but I said this is what they are talking about - AIDS.

At this time I was a big organizer of Arua Makoteca - macoteca is a local drink - and at that time I was its best member. Eventually, I went to the church and confessed and I got brave. I went to get tested. This was 2001. I was found to be positive. I said who do I tell? I told my older sister. I found if I didn't disclose my status I would be discriminated against. So I told my employees and everyone I knew so they would know why I was sick and missing work. Then they started giving me love.

I thought I was going to die - I was arranging all of my things and giving them away. I had totally lost hope with my life as my general health deteriorated. My weight dropped to 59 kilos from 73 kilos and my CD4 dropped to 33. None of my trousers fit me. I used my ties for tying the trousers to my waist.

In July 2002, I was given the ARV drugs. I experienced side-effects at first, but after a few weeks of taking ARVs without missing a dose, I was able to begin walking using a stick and to come out of the house and back. I've regained my weight and my strength. I don't miss work as used to be the case. ARV drugs greatly improved my quality of positive living and prolonged my life span. I vow to take ARVs until when they are no longer available or when God retires me from the wonderful world - peacefully.

When I was found positive, I saw these women with NACWOLA [the National Community of Women Living with HIV/AIDS]. They were giving testimony and I thought these are my people. We joined Nacwola and we got this experience of staying together and helping each other. But like when a baby gets older, it was time to develop on our own. So we said, what do we need to do? The men are not coming. We asked where are the civil servants, where are the leaders, where are the workers, is this just for lay people? No.

At that time an activist came to select representatives for the 11th international conference of people living with AIDS (PLWAs) and I went. I came back with all of these ideas, so we started a project with men. Now more men are coming out, but we haven't been supported and we are still lagging behind. If we are empowered we could do something. The government leaders do this without us - we are seeing drugs but they are not including PLWAs. We are not a problem but a solution.

ARVs have reduced the death toll here and even improved the environment. We were losing our trees to make coffins but now it is better. More people are coming out for tests today. But if the government cannot bring more clinics than it is a big problem. There need to be more drugs so that people get tested and get better.

Testimony taken on July 21, 2004

Grace Ndazo

Client of Prevention of Mother-To-Child-Transmission
On antiretroviral (ARV) treatment for 9 months

I was supposed to be tested back when I had my first baby. But I said, no sister, this I cannot do because I didn't have that strong a heart. When I was pregnant with my third baby, I came for the clinic; they counseled me and they asked me if I could test my blood and at first I had fear to come and get my results, then after weeks - I waited three weeks - I checked and I was positive. They were trying to counsel me and tell me not to have fear, but in fact I had no fear. They were asking me what I would do and I told them that I wasn't afraid - it is a fact of life. So I was not afraid of being HIV positive.

I will make sure that I get the treatment and that at least my baby, they will save it. They told me about infant feeding and asked me if I could put my child on formula. I told them it was okay and they started following me every week until I started labor and then I rushed to the hospital. In fact, my child was premature, only seven months. They gave me nevirapine earlier and I was moving all over the place with my tablets. So once I confirmed that this was really labor I took the tablets. They attended me and I delivered a baby boy - 1 kilo! You could still see internal things. They gave me my baby and drugs for it and vitamins for me. Then I took the child home. He is now eight months and each month when I bring him for milk, he gains 1 kilo. Now he is 8.8 kilos - he's very heavy. He's called Desire.

Later, they checked on my CD4 and they found it was 130 and they put me on ARVs but I reacted badly. The first one did me good but then the next one did me very bad and so then I didn't want to take them again. I told the doctor that I won't take it again. Then they gave me another one and but it was throwing me again this way and there. And I went back to the doctor and said I told you I'm not taking this again and they changed me to another one and this one is okay. ARVs have helped me a lot. When I was not on ARVs I was falling sick a lot and it would get me in bed. I was so weak. But right now, each time I go my body weight is going higher. I have a slight problem in my eye during the night but I don't mind. Now I don't ever say that I will refuse them. I will continue taking them.

We make sure all of the women in PMTCT stay busy and counsel each other. These women, when you declare your status to your husband, these men tend to run away from you. They abandon you with your children; there are very few who stay with their wives and there is a lot of abuse. So women fear to declare themselves to their husbands and their relatives. I told my husband and he was the one that brought me back to the clinic to collect my results and he told me I should not be worried and even if I have HIV I should not be mad because it is God's plan. But at times he can scare me so much and it hurts me so much but when I feel like I am so much hurt, I leave him and come out and get counseled from my friends and I come back and tell him this is the path that we are living. I've tried to counsel him to come and get tested. There was a time I brought him up here. The nurse took him to get blood taken but he ran away. He's been here three times now and he's getting closer but he still has fear.

The other women and I come together usually on Fridays for meetings and HIV education, dramas and songs. We even go to clinic to educate the women at the mother and child health clinic and get on the radio - we educate people.

The group has helped me so that now I can solve my problems myself. It makes me free to tell people my status and I feel no stigma and I am able to bring some people to the PMTCT group. I tell them what we are doing and what we are trying. When we started, we were 21 and now we are 50 something. Some of the women still have this fear, but when we go as examples and say things are like this, things happen like this and things are going like this for me. They can pick that courage from us. So this is what we are doing now.

Testimony taken on July 16, 2004

Charles Ecegeri

On antiretroviral (ARV) treatment for 23 months; the 13th patient on ARVs at Arua Hospital

First of all, I lost my wife in 1996. From that time I lived without a woman and I didn't know she died of HIV/AIDS. But changes started occurring in me - pneumonia had never attacked me, but it hit me one day.

I was sent to Koboko with the distillery I worked for, but I had to come back to Arua. It would be extremely hot but my body would experience an extreme cold. I had a cough that they said was bronchitis. My health was dilapidated and I went back to Arua.

I thought I could still work. I was constructing a small home. Then I realized I was finished - carrying a brick would take two hands and I would be completely breathless. From time to time food would disorganize my stomach and I got weaker. I was 16 kilometers away in Maracha. No one cared for me there. They think you're dying so no one helps you.

One morning, I sent off at dawn - 5 am - I reached Arua at 8 pm. I would take a few steps then sit down and rest, take a few more steps and sit down and rest. The person to which I came was my niece and a NACWOLA [National Community of Women Living with HIV/AIDS] member. So she sensed I had HIV. She said why don't we go and have this cough tested My sputum was tested and I had TB. This left me in bed for months. This lady never left. She pushed me to the HIV clinic. I had rashes all over and everyone could see I had HIV but I didn't have he heart to see it. I went to the clinic and got tested and was found positive. That was 2000. I was still in the hospital wards, and I would see Nacwola organizing women and my niece would go so I joined. I was the only man.

I asked the coordinator Rose, I am a man and this is the National Community of Women Living with AIDS, and she said you are most welcome. It built my esteem. We would go out to the radio and sensitize people, we went to big occasions. I was no longer worried about AIDS until my CD4 dropped to 151 and my kilos to 48. I had to fight for ARVs.

Now slowly but slowly, I exceed 60 kilos. My life before was ever disturbed. I would fall sick with rashes, diarrhea, fever, but these other sicknesses stopped and now I don't fall sick.

One other queer thing is I found I was lonely. The community around me was not happy. They knew me as a dead person, so I stayed with NACWOLA. I asked my doctor, I need a companion, is it possible? I was advised to be adherent to medical advice and then its well and good. So I chose a partner - not for sex necessarily, but as a companion. We declared our togetherness openly, which is why I have a ring on my left hand. We are both on ARVs in the Arua Hospital AIDS Program and we are really encouraging each other.

Testimony taken on July 21, 2004