Accept responsibility for AIDS, not fear

I have had some problems in my community. Towards the end of 2001, my neighbours started insulting me about my status when they got drunk. One time, it got so bad that we fought and they wanted to burn my house. One of them wanted to stab me but I defended myself. The police were called and instead of arresting the people for insulting me in public, I was jailed for defending myself. I spent a weekend in jail.

My name is Zoleka Lobi. I live in Khayelitsha. In 1999 I lost my brother to HIV. In May 2000 my cousin also died from AIDS. In October the same year, I lost a second brother to AIDS.

By the time my brothers died, I already knew that I was also living with HIV.

My partner had come from Jo'burg with a company in 1997. We decided to get married. In 1999 I fell pregnant and went to St Monica's clinic. It is there that I found out that I was living with HIV. When I told my partner I had tested positive for HIV, he said I should not have done the test. He said had done a test in Jo'burg and had tested HIV positive.

When I asked him why he did not tell me, he said he thought I would not want him if he had HIV. He reminded me that when we met he did not want to sleep with me. He asked me to marry him because he knew he loved me and wanted to be with me.

We fought for weeks and I decided to move out and live on my own. I felt lonely I thought about my brothers that had died. I was angry with myself for not learning. I thought that if I was faithful and was married I was safe. My husband was not sick, he was a handsome man and was good to me so it never occurred that he could be HIV positive.

I felt that I had failed my family because they would have to bury another one of their children. After some time I went back to my husband, I was angry but I still loved him. I would rather be with him than go back to be a burden to my family. Besides, I could not raise a child on my own.

After my maternity was over, I went back to work, my baby was three months by now. I was not happy at work, I was always scared that someone would find out and that I would be kicked out of my job anyway. My fear became so bad I decided to leave my job even though I was not fired.

I decided to go to a clinic to find out if there were social workers that could help me. It is then that I learned more about HIV. I was counseled on how to live with HIV and they explained to me that having HIV was not the end of my life.

I went back home and told my husband about the information I had received at the clinic and encouraged him to also go. He told me I was curious and asked what I went to a clinic for because I was not sick. I told him I would go back because even if I was not sick I needed to get information and help to accept my status.

When I went back to the clinic, they told me about a support group.

It was at the support group that I met people from Treatment Action Campaign.

I was surprised to meet people who are so open and who know so much about HIV. The HIV positive T-shirts they wore just changed the way I thought about HIV. Many of them were healthy and did not feel sorry for themselves. They told me about a branch meeting coming on Saturday in Khayelitsha and I went. The meeting was big. Many people from the community came.

Then this young woman stood up in her HIV positive T-shirt and started talking about treatments as if she was a nurse and she told us she was living with HIV. She told us about the constitution, that is the law of this country and that communities must treat HIV positive people as equals and not discriminate against them. That encouraged me to go to many workshops. Now I can talk in front of a group of people about my HIV status and about treatments.

In TAC there are mainly volunteers. We are encouraged to use the information we get to help other people. I also go home to the Eastern Cape to do education. I work in the Khayelitsha branch and we do workshops on Saturdays to train new people and to educate the community.

I joined TAC's Project Ulwazi as a volunteer educator. We go to clinics and support groups to talk about the importance of testing and that there are treatments that can help if someone is sick with HIV. We also educate pregnant women about the MTCT program that can protect their baby and encourage mothers to test for HIV. Other volunteers go to schools and workplaces to do education there. We also do talks for Radio. This is very good to give me confidence.

I have had some problems in my community. Towards the end of 2001, my neighbours started insulting me about my status when they got drunk. One time, it got so bad that we fought and they wanted to burn my house. One of them wanted to stab me but I defended myself. The police were called and instead of arresting the people for insulting me in public, I was jailed for defending myself. I spent a weekend in jail.

On Monday, TAC people came and asked the police why they did not arrest the neighbours. The police did not take the issue seriously and told them I would be released. The TAC people explained to the station manager that the law says no person can insult another person for having HIV and demanded that they do something about it.

After some meetings with the police and with the people who insulted me, the people were arrested. They came out the next day and started insulting me again. TAC people came to educate them about the law and about HIV. It took some time to sort this out. TAC worked with the Khayelitsha Development Forum and organized a demonstration to hand over a memorandum to the police saying that they must treat cases of discrimination with seriousness to send the message to the community that it is not acceptable. From the police station we went through the streets handing out pamphlets and carried our banner.

Now there are so many people in Khayelitsha who wear their HIV positive T-shirts all the time and no one insults you. This helped my neighbours to see that I am strong and that I am not alone and they cannot victimize me anymore. We are now good friends with my neighbours and some of them have also joined TAC and educate about stigma and discrimination.

Many people say TAC fights the government. TAC challenges the government if its policies are not catering for us, people living with HIV. This does not mean we fight government. In the same way we fight pharmaceutical companies for denying people the right to treatment by asking high prices for medicines, TAC will challenge policies of government that do not fulfill people's rights.

TAC took the government to court when it did not want to provide medicines that can protect babies against HIV. After a lot of community mobilization TAC won this issue. Now the government is obliged by the constitution, the highest law of the country, to provide this service at clinics and hospitals in all provinces. This will help protect at least 35 000 babies from getting HIV a year.

Now TAC is asking the government to implement an HIV Treatment and Prevention Plan. Many other organizations, like Cosatu, the South African Council of Churches, Women's organizations and many more, support this Treatment Plan. This Plan requires government and business to provide more nurses and doctors, medicines for all people living with HIV and antiretrovirals for those of us who need them. With antiretrovirals, people living with HIV can lead a long and healthier life.

The Health Minister must push for this plan to be accepted by all of government. If she fails, the 600 AIDS deaths that occur in South Africa every day become her responsibility. Although everyone must be involved, she has to give the leadership. A Treatment and Prevention Plan will help save many of these people's and reduce the number of people getting infected with the virus.

A big part of TAC's work is to make sure that medicines are affordable. For this, TAC has campaigned against companies that produce medicines and sell them expensively. This has helped to make medicines cheaper. One company called Pfizer was even forced to give its medicine Fluconazole (also called Diflucan) to government for free. In this way our government can treat us better and spend less money.

In 2001, TAC helped the government to win a case against the Pharmaceutical companies. Government wanted to make a law that would make it easy for people to get cheaper medicines, for all illnesses and the companies wanted to prevent this to guard their unjust profits. Government won this case and it has helped many African countries gain confidence to not let the drug companies bully them. This law must still be passed in parliament.

The education we do helps with the services at the government clinics. We also regularly hold clean-up campaigns at clinics. This shows our willingness to help government to make our health service better for all.

It does not affect me if people talk badly about TAC because I know how TAC has changed my life. TAC is changing the lives of many people. Many TAC volunteers visit people at home and educate families about that many illnesses people living with HIV get can be treated. Many people I know would be dead if it wasn't for TAC volunteers who went to their homes and took them to a clinic to get treatment. Many people still do not know HIV can be treated. TAC helps these people.

I have been luckier than my brothers. I live a healthy life. I have been on antiretroviral treatments funded by MSF at Khayelitsha clinic. It helped to be in TAC because by the time I started with my treatment I was already educated about how the drugs work. I knew about side effects and how they can be managed and I have not had any since I started. I am sad when I think about my brothers and wish they could have lived a few more years so that they could also get treatments like me. But the fact that I am on treatment has helped my family to have hope. It has taken away the fear that I will die soon.
Sometimes they forget I have HIV. At first they have been very scared by President Mbeki saying ARVs are toxic and my mother did not want me to take them. Now she is the one who reminds me first to take my medication.

You can see how my life has returned to normal even though I am living with HIV. I invite you to join TAC. If you cannot join TAC immediately, please join a support group and learn about treatments. It is a good way to learn to deal with HIV. In TAC you learn a lot about being a leader, taking responsibility. It also enriches your live if you are doing something for the community.