Radio Miraya
2809: Working Together: Young People Living Positively
Welcome to yet another edition of Working Together on Radio Mira. This is a weekly program focusing on work of UN agencies, international and non-governmental organizations including humanitarian actors in South Sudan. We explore how they they collaborate with the local people in providing services to the community. The program helps us to understand the issues affecting communities and offer solutions to those issues and the way forward. Don't forget to subscribe to our Facebook page at Facebook's last Radio Mira and you can also follow us on Twitter. At Radio Mira, I am Regina Corley. [MUSIC PLAYING] Backing together. [MUSIC PLAYING] Backing together. Mira's weekly program on humanitarian work. Backing together. Mexico better. [MUSIC PLAYING] Welcome back listener. Working together program right now. And today we are discussing about the activities of the UN positive South Sudan. We'd like to share their experiences and activities. The group also endeavor to provide an exciting opportunity to raise awareness about the challenges faced by young people living positive with the virus, HIV or other virus and to highlight on the efforts being done by government and partners like the joined UN United Nations program on HIV and AIDS to support them. And this group, I'm having them here. They are the one advocating or getting to the communities about cutting awareness and how people who are living with the virus can live positively and also avoid the stigma. You know, this is a virus that anyone can get at any time. So they get to the communities and sensitize the people. So in the studio I have Patricia Madam, a program officer, a young positive South Sudan. And we also have Grace Obba, program assistant, a young positive South Sudan. They are the officers working there and they get to the communities. So my guests, you're very most welcome to the studio. Thank you so much. Thank you so much. I can start with Patricia, you are the program officer for this group or this organization. So open for us about the young positive South Sudan, what is it and when was it formed? Thank you Regina. So young positive South Sudan was first started in 2019 and its main objective was to reach out to young people living with HIV, both those who are living with HIV and those who are affected by HIV. And our goal for the organization was to bring these people together to connect, to empower them, to be able to advocate for them. We know that in South Sudan we have issue where young people are always left out. We know there's much done regarding HIV in general in South Sudan. But young people as a category have been left out. And so this organization was formed to see that young people who are affected and living with the virus are hard in both the state level and national level and they are advocated for so that they can get the services that they need. Yes, sure. Thank you so much exactly. And this is what is needed because people really in the community, all of us, we need to know or hear or been since ties or been told they do and not to do this. You can do this and also so that you may be aware of those negative things. So thank you so much for that. And we can still continue with our discussion, we want to see about, you already mentioned the vision and the objectives. So how much have you reached the community about this sensitization? Yes, so we know that these people, the young people living with HIV are having challenges. For instance, they have stigma, they face a lot of stigma and discrimination. And because of that, they are unable to reach health services that they require. And they are also going through a lot mentally because HIV is seen as sort of like a death sentence in South Sudan. So you find somebody has an issue of self acceptance, people living with HIV, they have that. And so it makes it even worse for young people because of generally how in our context, how they are perceived. Normally when somebody reach out and say, okay, I got the virus, the first thing somebody thinks for as a young person is it's through sex. Yeah, they forget the other, yes, as you said. And there are so many ways where somebody can contract this disease. And so it makes it even harder for a young person to accept that I do have it. And how do I begin to interact with others and join? So some of the activities we do are psychosocial support. We gather them in one place and they talk about their stories, they talk about their experiences, no, there's power in storytelling. The moment you find out that you are not alone, going through something, live for more than years, even years. So then you become empowered. The second thing is involving them in outreach activities. We know that there's a slogan that is said, you know, by these organizations that are working with HIV, there's nothing for us without us. So by encouraging them to take lead, we give them positions to take lead and be able to reach out to their fellow peers. It makes it even a lot easier for them to reach to those where we could not reach, because they understand the struggle. So before we go further, I would want to ask you, when you gather people, maybe you know that the people, you are bringing some of the positive, what is the first reaction that they give you when you come to them and you said, you know what, we are come here to send status, but they personally say that, yes, you're coming to sense as us, but you don't know how I feel, how does it, yeah. Yes, it is a challenge because, as I said, nothing for us without us, you know, and to be honest, somebody who in this field, if you're negative to pass a, you know, it's not easy for you to really understand what somebody who's positive is going through. You cannot even be in their shoes, but it makes it a lot easier if you involve people like them to reach out to them, because you're talking, yes, because what you see is that they will open up more, but then also, we do not say that we are completely excluding negative, that you cannot reach them, you can, the way and the how is what is important. You know how you present yourself without stigma, without, I feel like with our interactions as young, positive in the community, we haven't really gotten a challenge, you have somebody start telling you, oh, you're reaching out to me, are you positive, yes, because they're also afraid and you need to interact, yes, and the mission of young positive is to ensure that they are interact, you know, let's talk, we also have negative people, the goal is negative and positive in terms, yeah, and remove that air of like isolation, you can connect and nothing will happen, yes, yes, okay, thank you so much, you have explained this, let me get to Grace with the program assistant, you also work with her and you go together to the community, so Grace, how does this program aims to promote and enhance the support to these people living with the virus in the communities? Yes, the program always they support like those who are living with HIV, true like giving them empowerment, they are supposed to be empowered because they are those who really have nothing, but when they are given that courage, then they come out, they come out and they can manage to support themselves, so also the other thing is they also has to be like given the ways how they can change life, like awareness and also education, that's very important, yes, they are supposed to be given awareness that this, you are not the only person who is that, what, having the virus, but there are many, there are thousands that are living with what, with the virus, you are still having life, you still have hope you can study and also you become somebody in the future. So how do you approach, sometimes you are all young and you are approaching maybe some parents or people who are older than you and already carrying the virus, so when they talk they start saying maybe they can say you are still young, you don't know what I'm doing or I'm being in my family right now, you know I don't have any business so that I can support myself and my family, how do you go about it Patricia, you can add them later and just can add. Yes, so how do we reach them? So yes, we understand because we are reaching young people, we have to go through the parents at times and so with the guidance it's just to be open and transparent, we ensure we tell you we are here and we want to help your child and for the guidance we don't leave them, sometimes we are in situations where you go to a family for example and you find maybe the guardian is also having issues, maybe she is not also getting the medication, she is positive and she is not also having access, we don't leave it there, we ensure to refer. So we collect the statistics and go and refer to those who are dealing with adults because the goal here is you know the mother, I also also leave out the father but mostly like when we are looking at these young children babies who are under mother care, if you want these kids to be on treatment you have to go through the mother, if the mother is adhering to the treatment well then definitely she will follow up for her child. So if you leave the guardian out then how do you expect the child to be on treatment? So we don't leave them out, we ensure to refer them, they are organizations like Nepu who are dealing with HIV and they are dealing with general population, so those people if they are linked they can know better to assist the adults but we are dealing with young people from the ages so you know from 0 to around 25. Thank you, so I wanted to say you have explained very well, so let us look at this situation where maybe the parents is the one who was having the virus and then you find that when the mother was having maybe pregnant with the kids she did not follow the right procedure so that this child could be born negative. So such people, have you ever gone to the community and found out maybe what percentage or any research whether there are many people who are born when the parents are doing having or there are many of them found themselves with it. Thank you and that is a very good question Regina. You see actually statistics say in Saasudan the majority of why children are getting this virus is because of lack of adherence from the mother. What we are seeing is most parents, let us say the mothers, they are not giving birth in hospital, that's the first thing. And you know in hospital we have all these services, if they go to ANC, anti-natal care they can be able to be tested and they are known and then they are put on treatment so that the child is not, yes it's not affected but if you're in that community, if you give part to the community then it become hard so this is one of the reasons that actually why children are having this kind of situation. The second thing is our context. We have the culture where women are afraid to speak and the thing is you know we are a patriarchal society in nature and when you look at that is that you know when you are like for example I put myself as an example I am married for instance and I go to ANC and I'm tested and I'm found out I'm positive. Then I have to go back and tell you my husband. So the first one to break up the news is that you never know who he was having right? And you go and the person automatically what will happen Regina, they will say you brought it. Because he had done for me. Yes and the man is not willing to go in his test test test so that both of them could be tested. Exactly. And sometimes this man might end up getting married to another woman and this is how the soccer continues well for me here as she gets put it. Then I'm left and thrown out of the house with my children. I'm left with nothing to fend for myself and at the end of it all then what happens you see. And he moves ahead without even testing. Exactly. This person has brought the message but has is he a carrier or he did not test. Those men have poor health-seeking behavior. That's what is in the rest of the day. Can we be able to speak a little Arabic or we can go into English? Oh, I heard of it that you brought the message to me. It's very simple. It's very simple. It's very simple. And it's very good. It's very easy. And I think that it's very easy to speak. And I think that it's very easy to speak. I think that when I speak English, I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak, and I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak, and I think that it's very easy to speak. 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I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. I think that it's very easy to speak. Welcome, buddy. Listen, you are trained to working together with me, Regina Corley, and with my guestly here in the studio taking us through this discussion of young positive sounds to them. These are group of young people who are working directly with the young people who are living positively with the virus and they get to the communities, sensitizing them how they can be positive and even educating, even if the mothers that they found around who are the guardians of these children, they should go and also go and take their medicines or those who are not tested should go and be tested. So, in the studio, I have Grace Obba, a program assistant, young positive sounds to them, and we have Patricia Modern, a program officer, young positive sounds to them. These are the people who go to the communities as they work directly with that group of young people who are living positive. So, if you have any question you would want to ask them, I can see someone online. Hello. Hello. Welcome. Oh, yeah. Yeah. When you are calling from, we are not getting you clearly. As if you are calling from fuck. Verifier, your sound comes very fine. I think you have a problem with your network because we could hear you from far distance. Yes. And if you have any question you would want to ask my guest about these young people who are working in the communities directly with the people who are living positively with the HIV virus or other viruses, and they also tell them how they can be able to, you know, live positively in Tara. It's normal. Do business. Do everything. You are normal like any other person in the communities. Nowadays, even HIV people are not fearing. You see that many people are dying with the cancer, hepatitis, plus other sicknesses. So why fear about HIV? And some of them as they say statistics show many are born with the parents who are doing, having the virus and they mean their tests. They were born with the virus. So is it their fault? No. And they have to move on and do businesses. Let me see someone online. Hello. Hi. Hello. Welcome. Hi. Hello. Hi. Yeah. Welcome to the program. Isn't that going to work again? He still has the problem with the network. Please. Our numbers, let me remind our call us, because we have many numbers. Maybe this number has been approved when it took. So 092-968-6297. And 091-206-2950. And 091-206-2079. You can ask my guest if you have any questions. Let me pick this other line. Hello, Redimra. Hello. Hello. Welcome. Hi. I have questions. So how can we recognize the person who has HIV for persecution? You are named fast. Okay. Yeah. My name is Boi. I'm from -- Ben. From Juba. Ben. Yeah. From Juba. So you're asking them how can they recognize somebody having the virus? Yeah. That's your question. Yeah. Yeah. Okay. That is my question. Okay. Thank you so much. Thank you for that question. Uh. Hello. Hello, Redimra. Okay. I wanted to pick another call so that they can answer together because your question is saying how can they recognize somebody with the virus. Hello, Redimra. Hello. Welcome. Yeah. This is what they're in question from western bar and present. Thank you. Thank you. Thank you. Yeah. In the first place I would like to celebrate this day because it's the first time to meet Rich Mariah. Oh, thank you. Welcome. Yeah. Very much. Yeah. My question is to the guest in the studio. Yeah. The program is actually very excited, but my question is just like this. I don't know for those who are far course. Uh, it is seems like it is now the program is in Juba. What about other states? Okay. They will answer you whether they're in the states or they studied Juba or they have branches, they will answer you. Thank you so much. Thank you. So you can answer quotes and then you can answer the other person who was asking about how do you recognize someone who's in the virus? Yeah. Thank you, Regina. So I'll start with the quote, the question about how far are we? So, um, we as, as I had put earlier, we are network. Okay. So in terms of the network, we are currently in four states. We have a networking year. We have networking Juba. We have networking to read. And I think we have network in Malachal. Okay. And Yambio. Okay. So you have those networks. Those are the networks. Okay. But as any other organization, okay. Uh, previously we were really strong. In all those days we had activities. But you know, of course, we are having challenge with all organizations as done where the funding that is given is not long term. You get short term funding. And so with that, that means what you had started. You know, at the end of it, all you cannot finish or see the impact. And this is what most organizations are currently lobbying with the donors. Like, why can't you give us more money so that we can see the impact, give us funding for five years, four years. So that is at that. But we also, our dream as young, positive students are so done because we acknowledge that young people are not only in Juba. And not only in those days of mention, we have a lot of states in Juba that people might benefit from this. And so this is what we are working on. And hopefully soon we'll be able to reach everywhere. And then as of how you can tell someone has the virus, I cannot look at you. And say that, yeah, this one, you know, a long time ago people would be like, those thin ones, you're so thin. So you must look at it. Yeah, this one has it, you know. But the thing is, the only way for you to know you have the virus is going to the hospital. And I'll tell you why. You see, people feel HIV because there used to be a lot of association with it because of how you look. You know, the pictures people used to see somebody's eyes are out. But not people are growing because they take the virus. Yeah, the medication, yeah. Well, you cannot tell. You cannot tell. And the virus itself, which I feel even in our sensitization, this is what we tell people. The virus goes to yourselves, okay, in our body. What it does is weaken your immune system. For those who might not really know this biology, immune system are the soldiers in your body. I'll give an example. Sometimes when we have flu, eh, this common call. Sometimes you will not take medicine, but after four days, five days, you feel better. There is this soldier in your body that fights it out. So what this HIV virus is, it goes and weakens this soldier in your body. And when it weakens, you do not die of HIV. What comes to your body is malaria, the TB. We define your body weak. They enter in your body and there is no soldier to fight it. So now there are a lot, and you end up, you know, getting affected and becoming smaller and whatever. And then, you know, people are necessarily fearing something that is really not... But any other things can make you smaller. Yeah, that is the point. When you see somebody they're rearing, and it's like she has the virus. Everybody wants to relate it to HIV, but what HIV has done is actually weakened the body so that all these other infections can enter and there's nothing to fight it. Yeah. Thank you so much here and she has explained to you. You cannot just see someone and you can be able to point to that. This person has. Unless maybe he's tested and he showed you the certificate or you interacted with him and said, "You know what? I'm living positively with the virus." That's when the person knows. It will be done to tell you, but looking with your naked eye, they have told you. And we have all known that you cannot point to somebody because right now some people who have accepted themselves and they're living positively with the virus and they're taking the medication, they're even just as healthy as any other person. Let me take another corner. Hello. Hello. Hello. Welcome. Hey, how are you? Good and you? I'm fine, thanks. Yes. Yes, we are listening to you. Your name and where you're calling from? Marconi. Marconi. Marconi. Marconi. Marconi. Yeah. Oh, Marconi, welcome. Yeah. Thank you. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. I'm happy to do that. My phone, I'll give you the seat. So, you guys. You got straight to your question. It seems like your network is not good and soon we are going to be off the device. Okay. Yes, ask you a question. No, no, no, no question. You have no question. You appreciate the program. I have no question. Okay. Thank you. Thank you. Yes, thank you. Hello. Hello. Hello. Welcome. How are you? I'm fine. Thank you. Only the walk away from us. Welcome. Welcome. Yes. Yes, I would like to welcome the guest in this studio. Thank you. Yeah. And I would like to ask a question. I'll go down to the question, right? Yes. Go ahead. Yeah. Now that HID is deadly disease, the whole world and it's almost affecting the immune system. And we have what we call CDP for what does CDP mean and what is it function in the body. Number one, number two, I got another question. Yeah. Number two, can I want to a mother of HID for CDP for CDP or that's the question I would like. Thank you. Thank you so much. Thank you so much. Thank you. Thank you. Good luck. Yeah. So to the first question you're asking about CDP for. So the sense is this. CDP for, we have T cells called CDP for cells in the body. These CDP for cells are part of the white blood cells that are responsible for protecting the body against infections. They fight any virus, any bacteria. And if that fails, this is where medication come in. When you take malaria tablets, they go to help these CDP for cells to fight the virus out. So now what happens is when this CDP for cells, when the virus comes in, the HIV virus into the body, they attach themselves into the CDP for cells and they replicate, meaning they multiply too much. So when they attach and multiply too much, yes, at first, initially your body will try to fight it. But you know that when you are many soldiers in the power, so it other powers. And why are we saying people should go for medication? So when you have HIV and this is happening in your body, the medication that you're given, the ARVs to say, they are supposed to go in the body and reduce the multiplication of this virus to the extent where now your body can even fight. And when you go for tests, the PCR, where they test everything, when you go to tests in the hospital, the level can go up to zero, where you find these people are tested and their card is negative. This is the goal. Because when somebody is at that level, they cannot give to their partner. And this is why medication is important, but with the medication, you have to take it as the doctor prescribed. If it is every day at eight, you have to take it every day at eight. So is that what sometimes doctors or other people say, no, the person ended up as a carrier? No. Or this different? It's different. For a carrier, there are people who are special. Me and Grace, we are different in body, sent to your region. Now we are all different our bodies. And there are people who are special in the sense that when they're infected, there'll be a carrier of the disease. What happens is maybe they sleep with someone who is HIV, or how they got it, maybe more resublet, or whatever. The HIV virus enters their system, but it will not affect them. They will carry the virus. You know how mosquito has that parasite that gives us malaria? Well, I'll just get it. You don't get it. Yes. Well, I'll just get it. So they carry it. And with this carrier, they can still transmit, but nothing affects them. Okay. Good. Thank you so much. Okay. The other question he was saying, when a child is born from a mother, who was the virus, can this child be positive or negative? This is what the other... No. You want to say something? No, you can. Okay. I mean this. Yeah. Thank you so much. This one, the one from mother to child. If the mother was HIV positive, and then she was not taking drugs, she will produce the child positive because she was not taking the drugs. So there, the virus will just go to the child, yeah, to the child. But when the mother is positive, by taking the therapies, following the environmental care, taking the therapies on time, when the doctor prescribes at eight, you're supposed to take the drug, don't take like two, nine, another day, two, ten, yes, no, that one cannot come. When the doctor said at eight, at eight, when it's at nine, you're supposed to take at nine. So that when the time for delivery comes, the child will be what? Negative. Though the mother is first in, but the... No, not have got to the virus. Yeah. Let's take another color. Hello. Hello. Hello, Redhamira. Hello. Yes, welcome. Hello, Redhamira. Hello. Yes, how are you? Good afternoon. How are you doing? I'm okay. That's the answer from Morgan. I'm turning welcome. Yeah. Actually, this disease has started quite a long time ago. There are rumors that the Western world, now they have a medicine which can cure. I'm just wondering, is it true? I wanted to, I will guess, to clarify this, but... This one, they can clarify, but remember, they're just a community rich youth, so they cannot be able to tell you if at all that medicine is there. Let them answer what they have been interacting in the communities, or maybe with the officials or doctors who may have told them some information, so you wanted to ask another question? Yeah. Another question is that sometimes when you are taking this medicine, the HIV/AIDS will go and hide in the brain, but when you stop the medicine, then it will come back. I don't know where that is. It hides in the brain? In the brain, yes. Okay. You hear from someone? You hear from someone. Yeah, this is the... Yeah, from somebody. Okay. Then you answer. So I wanted to... What it is? Oh, yeah. Let them answer. Yeah. If the training is good, whether that information is like that, also, thank you so much. Thank you. Antony. Yeah. Go ahead. Okay. Let's answer the first question of him asking about, is there treatment that can take the virus out? Unfortunately, there isn't any treatment as of now, because scientists are still working on it. If there was a treatment, many people now would already have gotten, but you know there have been progress, and by progress I mean this currently, it's even Africa, South Africa now. Okay. South Africa, they have reached a point where people are not taking tablets. You see, like ERVs, they are not taking troubles, there's an option for injecting, okay? You get an injection once, and then after six months, you get another injection. So to avoid the issue of, you know, stick my side in Africa, more than other countries, people don't really, whatever. So there's that. The next step. So and then for the HIV goes to the brain, well, these are the myths and misconceptions in the committee that we get, and it's not only-- I also had it. I had it, and many more, you know, but the thing is, the HIV, as I explained, doesn't go to the brain. What happens is if you don't take medication, it continues to replicate in your body. So when you take medication, the level reduces, and this way there is this what you call viral load, where they go and look at the levels of the virus in the body, yes. So it doesn't go to your brain. In one minute, what could be a final remark, our time is up, so that we get to grace, no. Do you have any final remark, or we can go to grace? Sorry, grace. Okay. And your final remark as well, yeah, time is run. Okay. I just want to have some-- is it one addition? Yeah. This-- In one minute. Yeah. This before we say that the HIV, when it is suppressed, it goes to the brain or testicles. That one is misconceptions, but sometimes the doctor says that when you pull your drugs on, sometimes it will just go to the joints, yeah. It will not be in the blood, but in the joints. But when you left-- you left the drug, then it will start also coming out. But suppose when you are taking the drug, it is suppressed, it should be like that. Continue taking like that. Even though you marry a negative person, you can stay because you are taking the drug. Thank you. Thank you so much. For coming to explain to us about your activities, the young positive South Sudan activities, and getting to the community. And I hope our listeners have been following us, and they have benefited from this program, and hope to have you another time where these people are asking you a lot of questions so that you can also send stays at them here. So in the studio, I had Patricia Modem, program officer, a young positive South Sudan, and he also had Grace Oba, program assistant, young positive South Sudan. Thank you so much ladies for coming to our studios.