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HIV-STIGMA WEBINAR
Lombe
To 
everyone and Bruce, perhaps we can stop the recording for now, until we Lyndsey has gone through the recording thing. I am delighted to welcome you all to this webinar on HIV stigma. And during the past several months, our research team has engaged in effort to learn about HIV stigma within the context of Sub Saharan Africa. The first phase of our research, which is currently underway, has focused on understanding factors associated with HIV, stigma, its manifestation, and effects on the well being of people living with AIDS, as well as their community, we've also paid attention to understanding interventions or strategies for mitigating these effects. The second phase of our research involves consultations with academic and practitioner experts, and this is the phase that we are at now. Today we have a group of experts who will help us learn about the current status of knowledge with regards to HIV stigma in Sub Saharan Africa, as well as other low and middle income settings, we appreciate your being here with us this morning or afternoon, wherever you're coming to us from, and we are delighted to learn from the group of experts that we have assembled. We're also excited to learn from each other. Going forward in phase three, we intend to hold listening sessions with community partners from different facets of community life, including health care practitioners, heads of schools, community leaders and community based agencies. At this point, we'll also conduct interviews with key informants, and this is going to lead to a knowledge sharing platform, which will bring together the key stakeholders that I've just alluded to. And again, I want to share my excitement for the opportunity that we have today to learn from the experts that we've assembled this morning this afternoon, and our hope is to have a fruitful conversation on HIV stigma. And we hope this is one of the steps that is going to guide development of effective interventions to end HIV stigma in Sub Saharan Africa, as well as hopefully globally, we look forward to an inspiring conversation. And again, I want to say a hearty welcome to all of you. Thank you for being here this morning, this afternoon, thank you. Thank you, and I'll turn the floor over to my colleague and dear friend, Lyndsey.
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everyone and Bruce, perhaps we can stop the recording for now, until we Lyndsey has gone through the recording thing. I am delighted to welcome you all to this webinar on HIV stigma. And during the past several months, our research team has engaged in effort to learn about HIV stigma within the context of Sub Saharan Africa. The first phase of our research, which is currently underway, has focused on understanding factors associated with HIV, stigma, its manifestation, and effects on the well being of people living with AIDS, as well as their community, we've also paid attention to understanding interventions or strategies for mitigating these effects. The second phase of our research involves consultations with academic and practitioner experts, and this is the phase that we are at now. Today we have a group of experts who will help us learn about the current status of knowledge with regards to HIV stigma in Sub Saharan Africa, as well as other low and middle income settings, we appreciate your being here with us this morning or afternoon, wherever you're coming to us from, and we are delighted to learn from the group of experts that we have assembled. We're also excited to learn from each other. Going forward in phase three, we intend to hold listening sessions with community partners from different facets of community life, including health care practitioners, heads of schools, community leaders and community based agencies. At this point, we'll also conduct interviews with key informants, and this is going to lead to a knowledge sharing platform, which will bring together the key stakeholders that I've just alluded to. And again, I want to share my excitement for the opportunity that we have today to learn from the experts that we've assembled this morning this afternoon, and our hope is to have a fruitful conversation on HIV stigma. And we hope this is one of the steps that is going to guide development of effective interventions to end HIV stigma in Sub Saharan Africa, as well as hopefully globally, we look forward to an inspiring conversation. And again, I want to say a hearty welcome to all of you. Thank you for being here this morning, this afternoon, thank you. Thank you, and I'll turn the floor over to my colleague and dear friend, Lyndsey. Lyndsey McMahan
Thank you, Margaret. And as Margaret said, Thank you, Hello everyone, and thank you for joining us today. I do want to let you know that we will be recording today's webinar. And a quick note, if you could keep yourself on mute if you're not speaking, that would be fantastic. So I'm Lyndsey McMahan. I'm the assistant dean of teaching and Innovation at Boston University School of Social Work, and I will be our moderator for today. And so, on behalf of the research team, we are delighted to welcome you to our webinar and panel of experts on HIV stigma. So speaking of the research team, please allow me to introduce them. We have Bruce mugaba, who's a lead investigator and lecturer at North rise University in Zambia. We have Lamech Mugala, and who is a lead researcher and senior lecturer at North rise University in Zambia. We have Gladys APPIAH, and who is a research associate currently working on pursuing her doctoral studies. All all the all the best on that one. Gladys, we have adoa Sarah, who is a research associate currently working on purchasing her doctoral studies. Same same Lux on that one. We have Miss Shari so vambe, who is a research assistant on the HIV Stigma Project, currently working towards a master's in social work. We have Dorcas shambi mwadembo, who is a research associate and a doctoral student at the University of Massachusetts in Boston, which is where I did my PhD, and we have Margaret Lombe, who is an associate professor at the Boston University School of Social Work. So thank you to our research team for bringing us all together today. So today, our opening remarks will be provided by Professor nkandi Luo. Professor Luo is a versatile, internationally acclaimed and well respected leader, Academician and researcher, publisher, states and states, person with sort of extensive experience engaging with world leaders and opinion drivers in health research and the development sectors. She has over 40 years of high level, practical involvement in academic, political and public service in Zambia, within Africa and beyond. Professor Luo has had regular professional engagement with international communities, primarily around health, HIV AIDS, infectious diseases, research and gender as an HIV AIDS researcher and activist, Professor Luo has been a pioneer of often topical and sensitive programs in HIV and AIDS, such as setting up National Blood Transfusion services in Africa, especially in SADC countries, mobilizing around male circumcision, voluntary counseling and testing, prevention of mother to child transmission and other things. And her pioneering work dates back to the early 80s, so please join me in welcoming Professor Luo for her opening remarks. You
Nkandu Luo
I thank you very much. I am not able to project my slides because the technology failed me, but I will try my best to be very thorough and audible. I want to thank you so much for giving me this privilege and rare opportunity to be the one to do the opening remarks as we talk about HIV stigma in Sub Saharan Africa, and I must say, it's a very complex issue, which in Sub Saharan Africa is influenced by cultural, society, norms and economic factors. And it is a significant barrier to ending HIV AIDS, so it must be handled with all the importance that it deserves, and it is very important for us to understand certain issues, like the complexity and that it's also manifested by nature. And that stigma is not just one word, it's it's complex in nature, but also manifests at various levels. For example, there is stigma that you is just affects individuals. There is family stigma, community stigma. You
Nkandu Luo
a stigma that exists. We have, for example, social stigma. Social stigma is a situation where a person starts feeling isolated from everybody else, local communities, or even their social circles, because of being living with HIV, we saw we also have verbal stigma in cases where people learn that somebody is living with HIV, there is A lot of gossip around that person, there's taunting, and sometimes within a family circle, they scold you because of
Nkandu Luo
HIV, physical stigma, is the situation where it's a situation where it's a situation where you start experiencing or being shunned or even being abandoned by your your circles, um, then you have stigma, which is self stigma. Where are you? Yourself? Start feeling depressed, emotional, and you have this feeling of shame. And when you see people, you feel embarrassed, and then you start developing low self esteem because of living with HIV. There's also what is called anticipated stigma, where you yourself just fear of being stigmatized or discriminated against because of the fact that you know your HIV status, and once we understand these different types of stigma, then it's easy to, for example, deal with stigma, because then you'll be addressing it at different levels. Now, the factors that contribute to stigma, like I said earlier, some of it is social, cultural. So because of the patriarchal societies that we live in, they do perpetuate stigma. Then you have also just limited knowledge. People don't know much. People don't know much about HIV. Although HIV has been with us for such a long time, we do have situations where the majority of people know very little about HIV, and this has contributed a lot to misconceptions that lead to stigma within our healthcare settings. You know, there's always new knowledge with HIV, and unfortunately, the healthcare workers are not really receiving a lot of exposure to the new knowledge, the new even the treatment schedules, so they are scared to handle patients. And this can lead to stigma, stigmatizing behaviors, where you find the behavior of healthcare staff now start spilling over to the patients within workplaces. We have a lot of stigma. You have people even refusing to share a cup with a person living with HIV, and obviously the person starts feeling it, then internalized stigma is where people just lose motivation, and because they lose motivation, then they don't want even to take treatment for fear that people are watching them, or even going to line up to receive their medication. So what has happened is exactly what you're doing, where certain studies are now being put in place, so that we start learning more about some of these causes of stigma and what interventions we can put in place. There's been a lot of studies which have explored experiences of people living with HIV. It's very important to actually speak to the people that are living with HIV, so that they share the experiences and the kind of things they go through. And because of this, you are able to identify some of these factors that contribute to stigma and the impact that it's having, not only on the lives of those living with HIV, but on the issues of treatment and so on and so on. For example, a study in Ethiopia showed that culture and society norms are the lead cause of stigma, and they did actually identify the patriarchal systems and also the traditional practices as being at the center of this. And because of that, there is a lot of discrimination for people living with HIV. In fact, if you follow the the HIV response in Ethiopia, they've done very well, but because of the stigma, it has actually not made meaningful impact, because the people are very slow in getting to the clinics, getting tested and also being put on treatment. In South Africa, there was a study that found that myths and misconceptions about HIV AIDS, where they're contributing factors of stigma and discrimination for people living with HIV in Nigeria, for example, versus HIV face stigma discrimination, and This has led to a lot of them losing employment. They also attributed stigma to society norms, especially being isolated by their peers and also by family members. And of course, this has a lot of a lot of implications for accessing health and also just the well being within society. And there was a quantitative study that was looking at gender dimensions in terms of stigma. And there was a metasystem study, which found that men living with HIV from Saharan Africa, experience personal shame, silence and society, isolation. And for women, they are disproportionately affected. And unfortunately for them, a lot of them suffer gender based violence because of their HIV status and they they also experience a blame game and rejection by their families, by their peers, as well as by communities. Therefore, as we look at addressing stigma colleagues, we need to look at a comprehensive approach that not only deals with the health aspect of HIV, but this approach must involve individuals. It should involve families, communities, as well as governments. And center for this must be the education and the awareness raising on issues of HIV and AIDS. And I think that working together can help us promote a lot of promote a lot of what I call call to action and which is inclusive. And this call to action which is inclusive will challenge discriminatory attitudes and support persons that are living with HIV, and when we take that kind of trajectory, it will reduce stigma and contribute to overall HIV prevention and care.
Nkandu Luo
Overall, we know from our research, which has been conducted, and I'm sure the experts that are going to share their research will show that if we take also, not only a collective action, but when we have a community based approach, where there is a lot of peer support networks, even with technology now digital technologies, we can reduce stigma and improve HIV, prevention and care. And I think that amongst the peers that should be included in this support should be those that are working in healthcare settings and providing guidance to patients. For example, here in Zambia, we had an approach where we had volunteers working within health settings. They get trained, and they are the ones who were working with people living with HIV, and the majority of them were people living with HIV themselves, so that they are able to share their own experiences with their colleagues who are living with HIV, and this really contributed to reduction in stigma here in Zambia. In conclusion, ultimately, we need a continent where everyone can live with dignity and without fear or favor of of being stigmatized and being discriminated because HIV is with us here for a very long time, and we need to address stigma with the importance that it deserves. The collective action can get us closer to ending the HIV AIDS epidemic, because persons will feel free to test and know their HIV status. This way, once they know their HIV status, they will be able to participate and access prevention programs treatment and care so colleagues, I want to conclude and end by saying, what is critical right now is, one, understanding stigma and the different types of stigma that exist. Two, being able to do intervention research, which actually, as you are researching, you are also intervening. And finally, a call to collective action. Thank you very much.
Lyndsey McMahan
Thank you. Thank you, Professor Luo, so much for those wonderful opening remarks. I really love how you frame stigma as this complex and multi dimensional experience. And you know, as a social worker myself, I really appreciate your argument that understanding the different types of stigma and factors that contribute to stigma really helps us better address it kind of comprehensively at different levels. So thank you again for for welcoming, welcoming us here, and kind of setting the tone for today. And so before I introduce our four presenters, I would like to offer kind of a brief overview of the structure for today's webinar. So each presenter, we have four will present. Will speak for about 15 minutes. After all four of them have spoken, we will have about 10 or 15 minutes of, you know, sort of a review of highlights and kind of a question and answer space. After the after the Q, amp a, we will take about a five minute break before inviting everyone to join, before inviting everyone back to the webinar to join breakout rooms for some small group discussions. The breakout rooms will be facilitated by members of the research team, and after about 20 minutes, we will bring everybody back to the main Zoom Room and ask that groups report back on their breakout room discussions. We will then close out the session with our research team. So I would like to remind everyone to please keep your cameras off, have yourself have yourself muted unless you're speaking, and to remember that all thoughts expressed are valued and respected. So now please allow me to introduce our four presenters. So our first presenter is Dr kanyanga Toto. Dr kanyanga is a medical doctor with over 18 years experience in implementation of HIV and AIDS community programs and providing comprehensive services to people living with HIV AIDS. Dr kanyanga was the community director of USAID safe in copper belt, the clinical director and regional director there as well, when winding up the project. He also held a position of provincial regional lead under USA, ID, CIDR Z, TV, L O N in muchinga province. And in addition to those already mentioned, Dr kanyanga worked in various hospitals and organizations including Monza mission, nchanga North General Hospital and Zambia Flying Doctors. He is currently working as a consultant. Dr kanyanga earned his medical degree from University of Luo Bashi and his mph with Taxila American University, School of Public Health. He also has certificates in leadership and management, monitoring and evaluation, HIV, AIDS and project management from Washington University. So Dr kanyanga todo is fully registered with the health professional Council of DR Congo and the Health Professions Council of Zambia, where he is currently operating. Our second presenter is Dr Charles hakoma. Dr hakoma is an HIV stigma reduction champion and an expert in empowerment policy and systems. He is a seasoned specialist with over 25 years of experience leading HIV, AIDS, stigma reduction and social inclusion efforts in Zambia across Africa and globally. He holds a PhD in gender studies and a master's in education, both of which are from the University of Zambia. He also holds advanced training in dermato venerology, clinical medicine and public health. Dr hakoma offers a unique blend of academic depth and hands on leadership. He has worked extensively with the Zambian government, National AIDS Council, USAID and PEPFAR UN agencies, civil society organizations and faith based institutions to design and implement evidence based strategies that reduce stigma, empower people living with HIV, and strengthen inclusive health systems. Dr Charles is passionate about human rights and equity, and is committed to building stigma free environments where all individuals can access services with dignity, confidence, confidence and without fear. So our third presenter is Dr Morgan kabata. Dr kabata is a medical doctor with 20 years of experience, and is currently the medical director at African Medicare Hospital in copper belt and the HIV AIDS and TB coordinator. Dr Morgan has worked in various hospitals in Zambia and DR Congo, including Ronald Ross as senior medical officer in charge of obstetric and gynecology at ndoula Teaching Hospital in Zambia, at SNCC teaching hospital in obstetrics and gynecology department in Lubumbashi, Flora Hospital in Luo Bashi and Kolwezi Medical Center as medical director in Kolwezi, DR Congo. Dr Morgan obtained his Master of Science and Public Health with the University of Suffolk in the UK. He has a certificate in leadership and management, as well as comprehensive abortion care. He earned his medical degree from the University of Lubumbashi. Dr kabata is fully registered with the health professional Council in Zambia and DR Congo. And our fourth presenter is madam sitzi dumba. Madam dumba is a social scientist, public health, counselor and educationist, with 13 years of work experience gained through supporting, implementing and coordinating community projects and programs in both local and international Non Governmental Organizations, she's worked with adults, children and adolescents in various communities of need. She has served in reputable organizations in various capacities, including data Associate Program, assistant coordinator, professional counselor district HIV testing coordinator, provincial, HIV testing program coordinator and community clinical integration coordinator for HIV services. Madam dumba has demonstrated success in leading working teams at provincial district facility and community levels. So in the above mentioned capacities, she has worked with the Catholic Diocese of Ngola, integrated AIDS program, USA ID zpct 11 B project, the USAID safe project, and currently with the USAID Zambia integrated health project, she holds a diploma in Social Work from University of Zambia, diploma in public health counseling from Bolton Health Institute, a Bachelor of Arts with education from Zambia Catholic University, a master's In development studies from Cavendish University, and certificates in social work, project management, monitoring and evaluation, leadership management, all from the University of Washington. So with our introductions completed, I would now like to invite Dr Kanyanga Toto to give his presentation and
Speaker 1
thank you so much. Lyndsey, thank you. Good morning, good afternoon to everyone. Dr Kanyanga Toto, just allow me to share my presentation.
Speaker 1
Okay? Kindly confirm, if you're able to see
Lyndsey McMahan
we can, yes, we see the references slide.
Speaker 1
Okay, 
I've let me put it on slides. Not. Okay. Um, great. Okay, so are you able to hear me? Yes, sir. Okay. Thank you so much. So I'm going to take you through HIV stigma in Zambia. I'll just, you know, run you through heading number one, which says stigma. You know what stigma is all about? So this is the presentation outline. We'll look at four headings. So the first one is HIV, stigma, what stigma is all about? Heading. Number two, experiences on how stigma manifests in communities. Our main focus should be in Zambia heading number three, how is HIV stigma addressed in Zambia? Heading number four, are interventions against stigma. HIV stigma effective in Zambia. So HIV, stigma? What stigma is all about? HIV. Stigma is not just a word, it's not just a word. It's a powerful force that hurts more than the virus itself. It's the fear, judgment, blame and silent that people living with HIV face simply because of their status. It shows up in whispers at clinics, hurtful labels at school, in lost job opportunities, and even published messages that condemn instead of healing. HIV. Stigma creates fear. It really creates fear. And that fear to get tested, the fear to disclose, fear to take the treatment, and fear to be seen. And this has contributed a lot in the loss to follow up, a lot in viral load suppression rate, which is extremely low in people who have got stigma because they don't even go to the clinic to get tested and they're not even taking ARBs. So but here's the truth, HIV is a virus. Stigma is a choice, a choice we make when we shame, isolate or look away. Understanding stigma means recognizing that it has many, many faces. We have internalized stigma. I heard Professor nkandulo was talking about it internalized stigma when a person feels ashamed of their status. We have perceived stigma when people fear what others might say or do, so the first two internalized stigma and perceived stigma, these are just self stigma, and we have enacted stigma when people are openly discriminated against, and we have institutional stigma when systems so here we talk about health system, legal, education or any other system reinforce fear of exclusion. So the last two basically social stigma or community stigma. Ending HIV, stigma is not just 
a medical issue. It's a moral and social responsibility, because when we break stigma, we open the door to one early testing. Because when there's no stigma, people be free. They won't be ashamed. They can go to any clinic and get tested lifelong treatment. They will stick on treatment. Their adherence will be very good, because they are no longer fearing anything. There is no stigma. So they will actually adhere to the treatment. And we are going to have a very honest conversations and lives full of dignity and hope. So what is HIV stigma all about? It's about changing the narrative from fear to facts, from blame to compassion to empathy to you know, that fellow feeling and to humanity and from silence to solidarity. HIV. Stigma is not just a feeling. It's a powerful force that shames, blames, isolates, silences. It turns a medical condition into a moral sentence, a psychological trauma, it causes people to hide, to suffer in silence and avoid testing or treatment out of fear of judgment, not just from strangers, but often from those closest to them. In Zambia, stigma shows up in hospitals, homes, churches, classrooms and markets. It's in the nurse who whispers about a patient's status, the uncle who tells a child born with HIV to eat separately, because the uncle believes that that child can actually transmit the virus because the child is HIV positive, cannot share the meal with other children in the house. The employer will find out and never goes back. You attend an interview, then they find out that you're HIV positive, off. We are not going to call that person because that person is HIV positive. So there's stigma there, the pastor who says HIV is a punishment for for the sin 
that we commit, and the young woman who hide her medication because her family still believes the myths I
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I've let me put it on slides. Not. Okay. Um, great. Okay, so are you able to hear me? Yes, sir. Okay. Thank you so much. So I'm going to take you through HIV stigma in Zambia. I'll just, you know, run you through heading number one, which says stigma. You know what stigma is all about? So this is the presentation outline. We'll look at four headings. So the first one is HIV, stigma, what stigma is all about? Heading. Number two, experiences on how stigma manifests in communities. Our main focus should be in Zambia heading number three, how is HIV stigma addressed in Zambia? Heading number four, are interventions against stigma. HIV stigma effective in Zambia. So HIV, stigma? What stigma is all about? HIV. Stigma is not just a word, it's not just a word. It's a powerful force that hurts more than the virus itself. It's the fear, judgment, blame and silent that people living with HIV face simply because of their status. It shows up in whispers at clinics, hurtful labels at school, in lost job opportunities, and even published messages that condemn instead of healing. HIV. Stigma creates fear. It really creates fear. And that fear to get tested, the fear to disclose, fear to take the treatment, and fear to be seen. And this has contributed a lot in the loss to follow up, a lot in viral load suppression rate, which is extremely low in people who have got stigma because they don't even go to the clinic to get tested and they're not even taking ARBs. So but here's the truth, HIV is a virus. Stigma is a choice, a choice we make when we shame, isolate or look away. Understanding stigma means recognizing that it has many, many faces. We have internalized stigma. I heard Professor nkandulo was talking about it internalized stigma when a person feels ashamed of their status. We have perceived stigma when people fear what others might say or do, so the first two internalized stigma and perceived stigma, these are just self stigma, and we have enacted stigma when people are openly discriminated against, and we have institutional stigma when systems so here we talk about health system, legal, education or any other system reinforce fear of exclusion. So the last two basically social stigma or community stigma. Ending HIV, stigma is not just 
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a medical issue. It's a moral and social responsibility, because when we break stigma, we open the door to one early testing. Because when there's no stigma, people be free. They won't be ashamed. They can go to any clinic and get tested lifelong treatment. They will stick on treatment. Their adherence will be very good, because they are no longer fearing anything. There is no stigma. So they will actually adhere to the treatment. And we are going to have a very honest conversations and lives full of dignity and hope. So what is HIV stigma all about? It's about changing the narrative from fear to facts, from blame to compassion to empathy to you know, that fellow feeling and to humanity and from silence to solidarity. HIV. Stigma is not just a feeling. It's a powerful force that shames, blames, isolates, silences. It turns a medical condition into a moral sentence, a psychological trauma, it causes people to hide, to suffer in silence and avoid testing or treatment out of fear of judgment, not just from strangers, but often from those closest to them. In Zambia, stigma shows up in hospitals, homes, churches, classrooms and markets. It's in the nurse who whispers about a patient's status, the uncle who tells a child born with HIV to eat separately, because the uncle believes that that child can actually transmit the virus because the child is HIV positive, cannot share the meal with other children in the house. The employer will find out and never goes back. You attend an interview, then they find out that you're HIV positive, off. We are not going to call that person because that person is HIV positive. So there's stigma there, the pastor who says HIV is a punishment for for the sin +21
that we commit, and the young woman who hide her medication because her family still believes the myths I 
