Hello listeners, I'm Dr. Kim Ozano and this is Connecting Citizens to Science, a podcast where we discuss how researchers across the world try to connect with communities and people to... Solve global challenges together. This is a second part of a two part mini series where we have been really focusing on health system strengthening. And today's episode, we get to hear from two advocates who have been acting within health diplomacy spaces and as researchers. We hear from Emmanuel Zaizay, who is affected by Neglected Tropical Disease Buruli Ulcer, as he talks about his experience of growing skills and capacity to communicate the needs of people he is representing. We also hear from Maurine Murenga, who is a TB advocate and has been present in high level UN meetings to represent her community. She is open and honest about both the strengths and opportunities of being an advocate, but also what this means to her on a personal level and what she's experienced. Her open reflections are really critical to how researchers function when engaging with communities. Enjoy the episode This episode follows on from the first episode and both are from the Centre for Health System Strengthening at the Liverpool School of Tropical Medicine, or CHESS for short. In the first episode, we focused on something called health diplomacy and how researchers can advocate for health system strengthening approaches and community voices in these health diplomacy spaces. So if you haven't had a chance to listen to that as yet, please do go back. It's really quite enlightening. One of the guests from that first episode was Dr. Kerry Millington, and she's joining us today as a co host as we speak with Mr. Emmanuel Zaizay and Ms. Maurine Murenga, who are both experts by experience. They both have lived experience of navigating complex health systems in different contexts, and they are advocates for strengthening health systems and care pathways. They are going to help us add depth of understanding about how best to embed community knowledge and lived experience into these health diplomacy spaces. Maurine Murenga is a TB HIV survivor and coordinator of TB Women. She is also on the steering committee of The Union's working group on gender equity in TB and very impressively, closed the UN multi stakeholder hearing on the fight against tuberculosis. We will also be hearing from Emmanuel Zaizay from Lofa County in Liberia. Emmanuel is a person affected by the neglective tropical disease Buruli Ulcer, and he will be speaking about community engagement from his perspective as a person affected. We have heard from Emmanuel before on season eight, episode three. So if you want to hear more from Emmanuel, check that out. So, for this episode, let's hear from Dr. Kerry Millington. Kerry, welcome to the podcast, this time as a co-host. Tell us a bit about yourself and then set us up by outlining how the existing political processes around health system strengthening are trying to include the voices of people with lived experience.

Hi everyone, I've been working in academia for over 20 years on global health and most recently I've been working with a range of stakeholders to ensure health research informs policy and practice to improve health and sustainable development. I'm privileged to work with affected communities and advocates whose voice should always be up front and heard. For example, I work on tuberculosis, the world's leading infectious disease killer. It was wonderful to hear the voice of the TB community so energised and loud at both the United Nations multi stakeholder hearing on TB and the United Nations high level meeting on TB, which was warmly welcome. So on that note, let us hear the voice of our first guest today. Maurine, tell us the story of how you became an advocate.

Hi, my name is Maurine Murenga. I'm from Kenya. I'm a mother of two. I became an advocate when I was diagnosed with HIV. During that time, there was no treatment, and therefore HIV was like a process. You, you are diagnosed when you're in stage one or two, and slowly the disease progress, and then you reach stage four, and then after stage four, people would die. And what I saw was that our health systems were not strong enough to handle the number of people who went to hospital during stage four in their final stages of the AIDS disease, and therefore they asked people to stay at home and die from home. It is then that as, communities of people living with the disease, we decided to, we were trained on home based care because of the stigma related to HIV. I learned that, most of the people who are actually in stage four had TB. Most of the people who die of TB actually die of preventable disease, of a treatable disease, and therefore it should not happen. Everyone, regardless of where they are, needs services. So that strengthened my urge to join advocacy very seriously, HIV and TB advocacy, to ensure that the generation that comes after us do not fight the same battles we fought. They don't lose lives that can be prevented.

Thanks so much. Emmanuel, tell us the story of how you became an advocate.

So I began to advocate on the REDRESS project when I was diagnosed with Buruli Ulcer, from the health facility in Lofa County, precisely, Kpakamai Health Facility. With REDRESS I went to all of the activities and from the interventions meeting where I served as observer the meeting, where they were training health workers in different areas or teaching them how to part diagnose NTD conditions and how to see if, if what is Buruli Ulcer and what is leprosy. From my actions, I was chosen to serve as co-researchers in the process of, uh, doing patient survey, new patient survey, and also doing a follow up and also from the baseline aspect, where we went to do health workers interview to know how many cases can surface a month or a day within the facility. I serve as peer advocate and also where other people call me, other persons affected, call me. 'Oh, please, please come for me. I'm in this condition. Please come and talk to me', and I go and share my stories. And that is what I do.

And how do you think speaking out breaks down stigma?

I think speaking out breaks stigma because uh, I have the life experience, where I almost got crippled, I no longer wear short trousers, but when I go talking to persons affected, I show them my conditions. So from the real pictures of my condition, you see, you get convinced that I can make it because this man with the kind of condition he got okay, and today he's serving as an ambassador for our project and he's serving as a peer advocate for, for our community and our persons affected. So I think I can hear by his advices and go by what our treatment he took to get to this level. That alone can help them, it can change, it can change the community. It will help the Ministry of Health and also to the health facilities because new patients will be pulled in because I have gone to the community with my experience with showing my wound marks, showing the mark to the community. As I was speaking now, we got more than 15 persons, 20 persons that have, because of my influence or because of my story sharing with them, they are coming for treatment. So those are things that I do. And that is what I need. I need support from other partners to, to make me a ambassador for persons affected in my country, so that I can help to eliminate NTDs globally.

You are so positive and a wonderful role model. Thank you so much for sharing that journey of how you became an advocate.. Maurine, What have you found worked well in communicating what you need and the needs of others?

For us to communicate our needs and the needs of others. It took a lot of different interventions. It depended on the context. There are times when dialogue helped. There are times when we needed to really demonstrate and fight back. Um, what we call resistance because when our health systems cannot manage the number of people that need services, they tend to go into a motion of burying the head in the sand or being very defensive. And so it takes a lot of pushback, a lot of fighting, for us to be able to really communicate the needs of the people and the importance of ensuring that we are saving lives. So we had, um, we had moments where we demonstrated. We had moments where we got into trouble with authorities. We also had moments where we were able to just have dialogue with decision makers and get our voices heard. So what I would say it was a mixture of interventions, um, that worked, but we always started with an opportunity for dialogue. If that didn't work, then we would take it to the next level.

Okay, and Emmanuel, over the last year, you've been speaking with ministers and lots of important people. Were you nervous at first and what helped you to become more confident?

So I was, I was nervous at first, my first time meeting with deputy ministers, uh, meeting with former ministers, that was at the Murex Plaza, where REDRESS had a intervention meeting, where we met with those, those hierarchies. I found it difficult, but the second time meeting where we were able to meet with, with the NTD director, Karsor Kollie, things became easier because it was not my first time and I overcome it. I imitated what people were doing and I did the same thing. While it's true, I have now been out of school for more than nine years because of my condition. So, speaking in front of a group has been a challenge. But later, after some time, I overcome it. And I came, I came to get used to it. And after that, I'm getting flexible with them.

I just wonder from a personal perspective, being an advocate is obviously a very personal, very emotional, um, role to have. How have you balanced this yourself with your desire to make change and your own personal needs?

As an advocate, internally, sometimes I give up many times, but then I reflect and I say, well, giving up will not take me to where we want to go. And so you put yourself out there. The life of an advocate is met with a lot of, like I said, resistance, and some of our health systems are structured to look at advocates like people who are critics, who mean to criticise and bring down the efforts that have been made. Um, I can also say that, uh, because of some of the things we faced, especially dealing with the HIV and stigma and people dying, there was a lot of, uh, violent moments, or there was a lot of times when advocates became very violent, and we took to the streets many times than we took to the boardrooms to have discussions. So I think there's lots of lessons that we have learned in terms of balancing between pushing, negotiating, um, influencing. And so there's always a need for a balance, but I would say that as an advocate, I have created as many enemies as I've created friends, and it takes a lot of thick skin to survive some of the backlashes we get as advocates. I have been cyberbullied. My kids have been cyberbullied. Um, some wrong information about me has been put out there, and all this is because of my engagement in advocacy. So I would say that real, real advocacy is not for the faint hearted, but if you you need to get where you need to get, then you have to do what it takes. So, real advocates are never compromised. We are very dedicated and we always look at the positive side from our minds we always see the light at the end of the tunnel. So we work so hard to get through this tunnel, regardless of the many challenges that we get. It is a very thankless space, but again, it's very satisfying. When you see people's lives getting better, when your own life gets better, then you, you see the fruits of the advocacy and you enjoy them.

I think that really helps us to understand the context you're working in and also the challenges of being an advocate. Do you think that researchers, decision makers and implementers need to consider safeguarding and making safe spaces for participation of people like yourself?

I definitely think, um, researchers, programmers, need to have spaces for people like me. A story is told of, um, it's not a story. It's actually an experience of when we were developing the post exposure, prophylaxis prep, oral prep. And there was a study, in Kenya, to roll out oral prep among the sex workers. So because they were not engaged in the research, they were not engaged in designing the programme, we just saw the final commodity that had been brought and we had mobilised them for enrolling. A lot of work went to prepare the project for enrollment of the sex workers. Everything was put in place. All the procedures and processes were followed and then the day of the launch came. And they were very excited about oral prep, so they came in big numbers. But when they came, the only challenge they had with the whole process was the color of the pill. The pill was blue, and they had a problem with the color of the pill because there was some drugs that were used to drug people that were also blue in color. And when sex workers were found with these blue pills, they would be beaten, because it was assumed that they were going to drug their clients and steal from them. So the color of the pill alone aborted the whole process. So we could not continue with the enrollment. They told us, well, if you change the color to white or pink or any other, please let us know, we will come and enroll. So, engagement is very, very critical. It helps us shape, it helps us design programmes that are people centered, that will work for the people. So the voice people like I bring to the table is just to guide the process. We are a very critical component of the design, the research, the programming, um, it is very, very critical that our voice is there so that we are shaping the process to succeed, because we know what works.

Maurine thank you so much for these insights. I think you've raised some very important issues that, you know, there are challenges, but the rewards are strong. We need to think about safeguarding. We need to think about spaces for people to participate. So, if you were to give advice, Emmanuel, to someone who is like yourself, affected by an NTD, but wanted to become an advocate, what advice would you give them?

My advice is is to be strong. If you got means to go to school, we could share with you to sustain yourself, to learn, to come back and help persons affected. And to help your community and to work along with a health system in a country or in your community.

Maurine, what advice do you have for both people who want to become advocates to make changes in health diplomacy spaces, and also for researchers and programmers so that they can make sure people like you have the space they need to make change.

My advice to advocates and activists is that they should be informed. Um, knowledge is power and one of the things that makes it successful in this field is that when you have your knowledge and your facts right. Collaboration and networking is also very key. There's, there's power in more. We are stronger together than we are apart. So collaboration is important, and we need resources to ensure that these networks are strengthened. There's also the component of being strategic which I talked about, to know when to have a dialogue to know when to get a bit more action, especially when you want to do demonstrations to know when to be persuasive, to know when to have trade offs. So you really need to be strategic in how you approach advocacy. And then the most powerful thing we have as advocates is our voice. So we always say that, use your voice with every opportunity you get, whether it is a meeting talking about male circumcision and your interest is preventing mother to child transmission. Just find a way of getting it in there! That's one of the strategies that we have found very successful using our voice and ensuring that we are getting into those spaces where those decisions are being made and participating meaningfully.

I don't think it's just researchers that are able to provide those opportunities, it's all the stakeholders, and it's forming those connections, trusted relationships with the stakeholders. So when those opportunities arise to engage with policymakers or to engage with politicians, you can bring the voices of the community to them for them to understand through pictures, through words, through discussions, the challenges that people affected by these diseases face.

Another one thing that I found very satisfactory is about empowering others, because advocacy is not just about one's voice, it is about empowering others to find their voices too. So encouraging people affected by the issues to advocate and share their stories and experiences amplifies what we are doing. So that is another critical, uh, thing. And then it's about celebrating victories. We get a lot of challenges sometimes and we forget to share our victories. One day someone told me that every time they give us a document to review, we always find the negative things. We never comment on the positives in that document. Uh, so I think celebrating victories, big or small, um, is, is, is really important. And recognising each other, the little progress or the, the, whatever, or the milestones we have made, fuels that motivation to continue in fighting for change. So... Always remember to celebrate the milestones. Another one is about self care. I say, I shared some of the challenges that we experience as advocates. So the self care is really, really critical. It can be very emotionally draining this space and, and mentally draining as well. So taking care of ourselves, prioritising self care is very critical. I learned that later, but it has really been helpful because nowadays I find time for self care and also having an ability or a network that can support fellow activists to support fellow advocates, um, so that we are not having burnouts. And then, um, the issue around resilience. It's never, like, a walk in the park. Um, it's not always gonna be easy. But resilience is very, uh, important. Setbacks are inevitable, but that shouldn't really kill the spirit of advocating for what we really believe in. So, we have learned to learn from failures. To adapt to new strategies, keep pushing forward and remembering that change takes time. Our perseverance is important in ensuring that we make a difference in the long run. Um, so, for scientists and programmers, we may not have the same skill set, but simplicity goes a long way when we attend your meetings and your forums and your, uh, spaces, making it simpler for us to be able to understand helps us to contribute more meaningfully. So sometimes the science, science is too much and, and we find ourselves lost in the process and then, uh, you don't get a lot from us. So I think, uh, for that is about simplicity. It's about trusting us, trusting our data, trusting what we tell you about what works and what doesn't work.

I think it's really key to maintain that energy, both through the good and bad times. And you talk, Maurine, about finding the opportunity, every opportunity you can to give your voice, but I think we also have to find the opportunity to make sure that voice is heard as well. You know, we're very much trying to work towards that with the researchers to have that exchange of ideas that can be understood from both perspectives to ensure we work effectively together. Because, as you said, we all have the same common goal, which is to end TB. And if we can do that better, then we will achieve this quicker for everybody.

Thank you so much to our guests. I've learned so much today and it's really clear that we as researchers have a lot to consider. We need to understand that it's our responsibility to provide opportunities for advocates to develop soft and hard skills so that they feel confident and comfortable communicating the needs of the communities they are representing in different spaces. Don't forget to check out the previous episode, which is all about health diplomacy spaces from the Center for Health System Strengthening. And hit that subscribe button now so you can get our next episode as soon as it's available. Thank you for now and have a good day. Bye bye