Wednesday, November 9, 2011

ARVs: too scared to save my life

Alone, Desmond Diko* sits at his kitchen table in Joza, shifting his anxious gaze from the glass of water in front of him, to the wall where the clock stubbornly hangs. Next to the water, he places a yellow and white capsule next to two white tablets to form a neat row. To pass the time, Desmond imagines his friends out celebrating the opening of the National Arts Festival. He feels a pang of jealousy as he glares at the pills. He blames them. He blames himself for them. The more he stares, the slower time seems to move. Finally, the alarm rings: it’s 8 o’ clock. Desmond has already gulped down his tablets and raced out the door. Desmond is living with HIV and these three tablets are what keeps him alive. These antiretrovirals (ARVs) fight the HIV virus in his body. They will never cure Desmond but they have offered him the chance to live a long and healthy life. “In 2011 nobody, nobody, should die from AIDS related illnesses,” says Dr Sindisiwe Van Zyl, who works for the Anova Health Institute, an NGO distributing ARVs, in Johannesburg. But people are still dying because they either refuse to take these drugs or start treatment when it is too late. “Patients don’t want to take ARVs,” explains Van Zyl. “It’s a traumatic experience for people. It’s like marriage: it’s forever.” Desmond admits he became troubled when his doctor told him to start taking ARVs. He had worked as an HIV and ARV counsellor for many years for the Treatment Action Campaign (TAC), educating and encouraging others, and still he struggled to start treatment. “It wasn’t a decision I made overnight.” Antiretroviral therapy (ART), a combination of three or more different ARVs, is “all or nothing” according to Van Zyl. This lifetime commitment can be daunting. “I felt like it was an extra burden,” says Desmond. He had just started to accept his HIV status and share that ‘burden’ with his family, when he was told to start ART. It was difficult to agree to “taking ARVs every single night for the rest of my life”. “Luckily, I was used to being around people who are HIV positive who were taking ARVs and living a happy healthy life,” he says. This knowledge, and the support from his family and friends, allowed Desmond to fight his fear of ARVs and begin treatment three months ago. ARVs have been described as a miracle drug and are trusted by health care providers. “AIDS is the end of the road,” claims Van Zyl. With a sigh of relief, she adds, “We no longer have to go there.” ARVs stop HIV from developing into AIDS. They have saved countless lives. However, fear often forces people to turn to traditional or alternative medicine first. “Patients are entering the system when they’re already on death’s door,” Van Zyl says. She blames this on the “horror stories” people often hear about the side-effects of ARVs. “Patients become so petrified they don’t take their medication.” There have been great improvements since the early days of ARVs. Also, people react differently to treatment. “Side-effects don’t happen to everyone,” insists Van Zyl. Before Desmond started treatment he was afraid he would develop severe and noticeable side-effects. He warned his family about this so they would not be shocked. “I only experienced dizziness and bad dreams for two weeks,” Desmond explains, relieved at how manageable and short-lived his side effects were. Desmond is fortunate: his family supports him which has helped him get through this difficult time. This is not the case for everyone. Siya Dlomo* fears discrimination, and has kept his status secret since he found out he was HIV infected in 2001. Desmond calls this “self-discrimination” and explains that when someone is afraid to disclose their status they prevent themselves from receiving support. They have to fight the battle alone. Siya cannot share his burden with his family, like Desmond. Because of this he has suffered. After two failed attempts to kill himself he was admitted to Fort England Psychiatric Hospital. He spent four months in the facility last year before the doctors told him he could go home. “I was shocked to see home,” he recalls the day he was released. “I went inside and sat on the bed and listened to the radio. That’s when I realised I’m nothing in life.” The only thing that helped Siya out of this depression was finding out he was going to be a father. “I have a responsibility to Siya Junior,” he says as a rare smile brightens his face, briefly disguising the usual grave expression. His girlfriend only found out about his HIV status when she realised she was pregnant. She was shocked to learn she was also infected with the virus. Siya did not tell her because he feared she would be hurt and blame him. Her reaction came as a surprise. “She said this is our problem now: let’s stick together.” Support from family or friends can help a person begin treatment and take their ARVs every day at the same time. But Desmond soon learnt that he also had to find strength in himself. It is the last night of the Arts Festival and Desmond is out with his friends. It is almost 8 o’ clock. He gets up from the table where his friends are drinking, joking, laughing, smoking. His friend looks at him, “Stay, we’re just starting to have fun. You can skip your pills just for one night”. Desmond still feels guilty for skipping his medication that evening. He knows he risked compromising his treatment, and his life. ART is saving Desmond’s life but he still has to try and fully accept them. “I trust them, but I’m still watching them.” *Names have been changed Grey Box ARVs can be accessed for free at any primary health care centre in Grahamstown: • Settlers Day Hospital 046 622 3033 • Anglo African clinic 046 603 6144 • Middle Terrace clinic 046 603 6102 • V Shumane clinic 046 603 6077 • Raglan Road clinic 046 603 6084 • Joza clinic 046 603 6026 • Extension 7 clinic

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