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Q2 2018

posted Jun 25, 2018, 2:28 AM by Elsabe Ros

This year we can commemorate that the work of Khothatsong, albeit initially under other names, has been going on for 20 years. In 1998, when my family came to South Africa the HIV/AIDS epidemic was killing thousands of people. The government was doing very little to help and NGO’s were scrambling to fill the gap. My mother, Nellie Kleijn, together with a team of fellow-Christians heeded God’s call to “preach the good news to the poor” and to “bind up the brokenhearted” (Isaiah 61:1).

Initially, they started the process by forming an AIDS subcommittee of the Evangelism Committee of the Free Reformed Churches of Pretoria. The first work of this committee was to develop an awareness pamphlet and poster. The pamphlet and poster boldly proclaimed the gospel news that there was hope and forgiveness, even in the face of AIDS-related death.

Through networking with various other concerned people, the AIDS Committee soon grew into an organisation that was given the name Kagisong. The organisation provided both home-based and hospice care.

In the meantime, South Africa’s second democratically elected president, President Mbeki, led his government on the road of AIDS denialism. He and his minister of Health, Dr Tshabalala-Msimang, claimed that AIDS was not caused by HIV, but was rather a socio-economic issue. They refused to provide anti-retroviral treatment (ARV’s), desite the numerous court cases brought against them.

When the government was finally forced to relent in 2003, it continued to drag its feet and failed to meet its roll-out targets. Dr Tshabalala-Msimang even went so far as to warn people against using ARV, claiming that they were poison. She instead recommended a variety of remedies such as garlic and beetroot, earning her the nickname “Dr Beetroot.”

The government’s attitude resulted in at least 300,000 deaths. It also resulted in a highly stigmatised illness. Myths about AIDS abounded, including that it could be cured by raping a virgin. People who had AIDS were rejected by their families and communities.

In 2008, I experienced the horrors of AIDS and its stigmatisation. At the time I was working as social worker for another organisation. My work was focused on the townships around Pretoria. I had a team of social auxiliary workers working with me. One of them, let’s call her Jane, was constantly sick. She, however, did not want to discuss the matter with me.

By that time, Kagisong had ceased to exist and had been replaced with Khothatsong. The organisation had started another hospice and continued to provide home-based care. Since my work was in the same community, I regularly passed that hospice and told my colleagues about Khothatsong and my mother’s role in that organisation.

One day Jane told me that she wanted to meet my mother to tell her something. By then she was actually quite ill and was struggling to work. During a private conversation with my mother, she admitted that she had AIDS and begged my mother to help her. That same day my mother dropped her off at the hospice.

However, rather than this being the beginning of her recovery, it was the beginning of what would become a tough six months. After about a week Jane decided to walk home from the hospice because she was worried that her family would steal her salary out of her account. I managed to have her readmitted. She developed a form of AIDS-related dementia and was a real handful for the hospice. She ran away a few times and eventually the hospice no longer wanted to take her back.

She then stayed at her parents’ house. I regularly visited her there and got to know her family quite well. Her parents had quite a number of children. However, by 2008 they had already lost a few of them, one or two to AIDS and another to gunshot wounds. As soon as Jane had started to become ill, her mother began to emotionally detach herself from her. Although she allowed her to stay at her house, she did little to support her. Due to the stigmas, Jane was not allowed into the kitchen for fear that she would make everyone else ill. Her 13-year-old son did his best to care for his mother – at times preparing her some food.

Whenever she had to go to the hospital or clinic, she would phone me to ask me to take her, as her family did not really want to do so. By the end of the year she seemed to be feeling a bit better, although she was still painfully thin. In December she said that she would love to attend a Christmas party that my other colleagues and I had organised for some of our clients. When I, however, arrived at her parents’ home to fetch her she was crying from pain. She begged me to take her to the hospital. Her mother was rather dismissive and suggested that she was just putting it on. I ended up taking her to the hospital and she was admitted. I stayed to see her settled in her bed. She then asked me to please fetch her phone and purse and drop it off at the hospital. When I returned to the hospital about two hours later, the nurse would not let me go to her room and instead took me to the nurses’ room. She asked me to sit. She then told me Jane had passed away. She said that normally she would not be telling me this, but due to the fact that she could see that I cared and the fact that her family were dismissive of requests that they come to the hospital, she felt compelled to tell me. She asked me to contact the family and urge them to come to the hospital.

Thus Jane passed away alone in the hospital, without any loving support of her family. This happened at a time when ARV’s were available. She had not had the support she needed to consistently take her medication. It broke my heart…

This happened ten years ago. What is the situation like now? Khothatsong no longer has a hospice. We now have a team of home-based carers as well as two foster homes and an awareness programme. The government has improved its ARV programme, and access to this vital medication has changed many people’s lives. However, the stigma often remains. People often still do not want to disclose their HIV status for fear of being rejected. Although ARV’s are now more readily available, government policy does dictate that the patient’s immune system needs to have been compromised before they qualify for treatment. In addition, there are people who stop using their medication and become seriously ill as a result. The infection rate, especially among young people remains high. In the last couple of years drug use has also contributed to this infection rate. The latest trend is the “blue-tooth” drug use, where one person injects the drug and others then withdraw blood from that person and inject themselves with that blood. Khothatsong’s work is far from over; although AIDS is no longer the death sentence it was in 1998. Please continue to pray for and support our work.

Willemien Kleijn

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