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Refilwe’s story – understanding the facts of HIV
Refilwe is 15 years old, in Grade 9. She lives with her mother, her auntie and her two younger brothers in Diepsloot, near Johannesburg. Her friends call her Refi. Her dad is a long-distance truck driver and he comes home once a month. Refi has no sisters but her best friend Naledi is like a sister to her. Naledi lives next door with her aunt, uncle and her cousins. Refi and Naledi are the same age, they were even born the same month, in September, and they have been like sisters since crèche.
“Hi, I’m Refilwe, but please call me Refi. I would like to tell you about my best friend, Naledi. We are like sisters. We live next door to each other, we spend a lot of time together, we braid each other’s hair and know each other’s secrets. We are in Grade 9. Every day we walk together to school with other girls from the street. We sing in the same Gospel Choir, both soprano, we are both big fans of Ntokozo Mbambo, and we share the same dream – to sing and travel with Joyous Celebration.
I am feeling bad right now because Naledi tested HIV positive and she is my closest friend. It was such a shock when she told me. I know millions of people in South Africa are HIV positive but I never thought it would happen to her. Monde is her first boyfriend. She was a virgin when they started having sex, and she has never had sex with anyone else. Shame, Naledi was faithful to Monde and she thought he was faithful to her. That is why she never asked him to use condoms. She went to the clinic to get the contraceptive injection so she was safe from pregnancy but she never thought about HIV. I am telling you, no-one would guess that Monde is HIV positive. He is such a good looking guy, fit, he runs the half marathon and plays soccer and looks super healthy! Maybe he has never tested – maybe he doesn’t even know his status …”
Can you tell by looking at someone if he or she is HIV positive? [Key points – you can look healthy, you can be healthy, while living with HIV. Some people carry on looking and feeling fine for years. Maybe they do not even know their status – but they can still infect their sexual partners]
“When the nurse told Naledi that she was HIV positive, she ran away from the clinic before the nurse could explain. I can see she really needs support. That’s why I went to the clinic with her the same week. We had to wait a long time in the queue, but the nurse was nice. She just said: “Hey Naledi, I’m glad you came back so we can make a plan to keep you healthy.” She checked Naledi’s CD4 count to see how much the virus has damaged her immune system. Her CD4 count is 475, and that is not bad – but there is a new rule that if you test positive, don’t wait until your CD4 count goes down, start ARV treatment immediatelty. If you stick to the treatment 100%, even when you feel well, you can expect to live more or less as long as an HIV-negative person. That’s amazing, don’t you think? I am going to keep reminding my friend. We had to wait in another queue to get her ARV pills, and while we were waiting, we saw a video about HIV. That’s why I know about CD4 counts now! I learnt a lot from the video that I want to share with you, but let’s see how much you know already.”
What is HIV and what does it do to the body? [Key points – HIV is short for the Human Immuno-Deficiency Virus. The body has a special system to defend itself against infection and illness, the immune system. HIV keeps making new viruses every day and these attack the immune system. If your immune system is weak, your body can’t fight infections and that’s why you get sick easily. That’s why many HIV positive people get TB.]
What is the treatment for HIV and how does it work? [Key points – the drugs that treat HIV are called anti-retrovirals (or ARVs). ARVs make your immune system stronger – that’s why you have to take your ARVs every day, even when you feel well. You also need a healthy lifestyle – eat healthy food (not junk), exercise, sleep, avoid smoking and alcohol and use a condom every time you have sex.]
“The next time Naledi went to the clinic she got ARVs free. She started taking them the next day. She set an alarm on her cell phone to remind her to take the pills at the same time every day. Yesterday on the taxi she heard people saying ARVs are dangerous and they can even kill you. I am worried about what to say to Naledi. I need to know more about HIV treatment to keep supporting her to take her ARVs.”
Are ARVs dangerous? [Key points – in the past lots of powerful people used to believe and say that ARVs are dangerous, even ex President Thabo Mbeki and his Minister of Health, Dr Manto Tshabalala Msimang. They were wrong, but lots of people believed them and did not take the ARVs. Thousands of people died because they didn’t get ARVs. It was a long struggle to get free ARVs at clinics for people living with HIV.]
What about side effects? [Key points – strong drugs often have side effects. If you suffer side effects when you start taking ARVs, these usually get less as your body gets used to the treatment. If the side effects are too serious, the clinic may have to change you to different ARVs.]
What do you have to take? [Key point – in the past many people had to take lots of ARV pills, but today most pills can give you one pill to take every day at the same time.]
Is there a cure for HIV and AIDS? [Key points – there is no cure for HIV and AIDS yet. Don’t be confused by false promises – some churches and traditional healers promise to cure HIV and AIDS, but often they want your money. ARVs do not cure HIV and AIDS, but they help you stay healthy and they are free from the public health service.]
What is the window period? [Key point – there is a window period of about six weeks or longer after you get infected. If you test for HIV during this time, you may test negative even though you have been infected, and you can easily pass HIV on to someone else.]
“Thanks! I feel better now that I know more about HIV and AIDS, and about how ARVs help. Thanks for helping me to understand, so that I can help my friend. Naledi blames herself for trusting Monde too much, but she is back in our Choir and one day we will sing together in Joyous Celebration! By the way, I went for an HIV test so that I would know my status, even though I have never had sex. I tested negative. I think I will wait until I finish my matric. I might change my mind if Mr Right comes along, but he will have to condomize. No condom, no sex!”
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