Lima, Peru — Research has shown that social behavior change is a cost-effective tool in HIV prevention, particularly when combined with robust advocacy efforts. When young people are equipped with accurate knowledge and empowered to make informed decisions, they are more likely to engage in preventative behaviours, contributing to the broader goal of reducing HIV transmission affordably and sustainably. This approach also highlights the value of integrating community voices into research, ensuring that prevention methods are not only scientifically sound but also culturally relevant and widely accepted.
AllAfrica's Sethi Ncube is in Lima, Peru, for the 5th HIV Research for Prevention Conference, HIVR4P 2024, and spoke with registered nurse Idah Mulala, who extended her passion far beyond the hospital and became a strong advocate for HIV prevention, particularly among adolescents and young people. Through her work with the Coalition to Accelerate and Support Prevention Research (CASPR) and her involvement in medical HIV prevention research, she wants to ensure that youth participation in HIV prevention interventions is not only encouraged but also innovative.
Her abstract Revitalizing Innovation in Youth Participation for HIV Prevention Interventions in Zambia at the Good Participatory Practice Symposium at Wits RHI Research Institute saw her qualify to attend and present at the 5th HIV Research for Prevention Conference, better known as HIVR4P 2024, in Lima.
What inspired you to dive into HIV advocacy, especially from such a young age?
Well, my career started as a registered nurse. While I was training, I would see a lot in the hospital, especially among people living with HIV. I'd see the outcomes of poor quality care and also lack of support and care, but also beyond that, challenges for adolescents and young people to access HIV prevention interventions, unavailability of integrated and comprehensive HIV prevention interventions for adolescents and young people. I would test a lot of them HIV positive, pregnant, with STIs, I'd nurse those that are living with HIV and they'd have defaulted, they have opportunistic infections, it was a mess.
what really inspired me was mainly just to provide solutions to people
Looking at the hospitals, there'd be doctors, nurses, a health system, I would wonder why all these things are happening. So one of the key things we were taught in nursing school is that one of our roles is were advocates. We were taught as an advocate, you are to act and make decisions on behalf of other people, but also you have to act in the benefit of other people that you are serving.
And for me, that really informed my advocacy. I took interest in being an advocate, although I did not understand what being an advocate really meant in Zambia and in Africa, and even the world at large. And I started getting into spaces of mentorship, and that's when my career then began in advocacy. But to say what really inspired me was mainly just to provide solutions to people. I felt like I could be someone that would bring a solution to somebody.
What's been your most exciting moment so far at the HIVR4P conference?
My most exciting moment has been all the HIV vaccine research findings and updates. I believe vaccines in general have done a tremendous job in eliminating and eradicating diseases all over the world, from polio, meningitis, in babies and in adults, and seeing that despite the complexity of the HIV virus, scientists are not going to give up. They're still going to keep pushing with the research, and they're going to find an HIV vaccine. I believe an HIV vaccine will help us to control HIV infection, but also, ultimately end it, for me, those who were exciting moments, but also the results from PURPOSE 1 and PURPOSE 2 studies on the lenacapavir long-acting injection, how effective it is, how safe it is for men and women, pregnant and lactating women, babies, adolescent girls and young women involved in the clinical trial. Those were really exciting moments for me. Lenacapavir results are likely to inform even future trials on what product developers should include in terms of conducting clinical trials.
If you could dream up the perfect HIV prevention tool, what would it look like?
For me, the perfect HIV prevention tool would be very attractive in terms of color and size, but also it would inform pleasure in terms of sexuality. So if I'm gonna use a product to protect myself in terms of HIV or STIs, it shouldn't just be about risks and fear, but it should also contribute to pleasure. For example, it should be colorful, smell nice, and should be able to turn me on when I'm using it. For me, that's what the future looks like. And I believe if young people can get those kinds of products that turn them on, they smell so good, they're playful, that could be the perfect product.
What are some of the biggest misconceptions young people have about HIV research and prevention, and how do you tackle them?
The biggest, I think I've noticed with young people, is that research is for big people, for people with degrees, with Masters and PhDs, people going to big universities. Anybody can understand research, take part in research. You can take part in research as an advisor, advising researchers on what they can do, how to do it, how can they develop a product, how it should look like. You can take part in research as a trial participant because there's a misconception that taking part in trial research as a trial participant, it means that you are being used, that's a misconception. No, you are not being used, you are contributing to the future of a world free of a certain disease that researchers are trying to eradicate. You are helping to add value to the community.
In research, there's what we call non-human primates, and this is where they use rats, mice or a monkey to test the drug for safety first and to elicit some certain immunological response. Then when they see it safe, that's when they move it to human beings. There's a misconception that you are not supposed to take part in that, they are using you but they did the same for paracetamol, which is a painkiller. They did the same for things that we're using for diarrhoea. I'd want young people to understand that those are normal parts of research. They're supposed to be done for us to come up with good interventions.
No, you are not being used, you are contributing to the future of a world free of a certain disease that researchers are trying to eradicate
In Zambia, we have a cohort of adolescents and young people who are our mentees, and we are teaching them research, good participatory practice, good clinical practice, research considerations, consent, phases of research, the types of research, such as randomized research, counterfactuals, we are teaching them all those sorts of things. So that when a researcher comes saying they want to do research, they already have background information, they know this is what's supposed to be done. That is how we've been dealing with the misconception, and for us, that is a guarantee that those young people are going to spread the word because most of them are healthcare providers. If there's a trial that has to be done in Zambia, it will be easy for us to choose our participants, because they understand what exactly is happening.
You've had a chance to see firsthand the development of new biomedical HIV prevention tools. What excites you the most about these innovations?
What excites me most about these innovations is that now we're having innovations that are coming out because of the voices of the community. Before, what was meant to be prevention tools were just scientists sitting alone in isolation in a room, and they'd say, "We're going come up with a pill for oral prep. It's going to be this size, we're going to put it in this bottle, and people are going to be taking it every day". Now the community knows their rights, they know what they want, and they're telling researchers what they want. "If you're going to study on a pill, we want it this size, we want it in this color, we don't want those bottles that make noise, we don't want a pill we have to take every day". That is all coming out of the community voice, and that is what excites me. People are coming out with their own agendas, we now have what we call the Choice Manifesto, which highlights choice in HIV prevention for adolescent girls and young women in Africa. We now have what we're calling the People's Research Agenda which highlights what researchers should look at when coming up with products. It gives them recommendations, how products should look like, how long, on demand, event-driven, so that researchers have a reference. They're not thinking out of their illusions, they are referencing from what the community is saying.
With everything going digital, how do you use social media or other digital platforms to engage and educate your peers about HIV prevention?
Because of Covid, we've now really gone digital. A lot of young people are on social media, and so we have a social media page on Facebook. We chose Facebook because it is really easy to use and it is used by loads of young people. What we do is we conduct weekly talk shows with young people, we just ask them, "What would you like us to talk about? Should we handle this topic?". Then they tell us what they want us to talk about. Then we even invite them to be panelists. Then we just give them data bundles, because young people want to feel important, asking them what we want to talk about is us promoting youth participation and leadership in decision-making. We ask them, "What do you want to talk about?" they'll tell us, we don't just come up and say we're going to talk about oral PrEP. We have posters through our social media page, it's called Ascent Features Foundation page.
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When the researcher updates the community on the stages of the research it opens a relationship between the researcher and the community
We have posters all through that social media page, and we just do very small infographics, because young people like catchy things, not too many writings. We're trying to explore different methodologies we can use, but we have a chat icon because we understand that not all young people are extroverted and want to be seen out there. We have those that just want to consult privately, and we allow that for them.
We have a number where there's a WhatsApp icon, and they click and ask, "Where can I get this service? I saw on your page you are talking about this, is this available? Where can I get it? Where can I get it from? What does it look like?". Then we ask, where are you? Which health facility would you go to? What kind of healthcare provider would you like? Would you like to go to a youth-friendly space, or would you like to go to the main health facility or the main ART point? Then they choose because for us choice really matters.
In your opinion, what's one thing that could make the relationship between researchers and the community more dynamic and productive?
There has to be, first of all, a deliberate intervention from the researcher to openly communicate what they're trying to do. Don't come into our community when you've sat down in your labs and you've done everything, then you come and say, "We're doing this research", come to the community and say, "Can you tell us, what problems do you have?" The researcher should come up with a research problem, together with the community and that will inform trust because the community will feel part of the whole process. When the researcher updates the community on the stages of the research it opens a relationship between the researcher and the community. The researcher would have adhered to good participatory practice in terms of community engagement, they would have been transparent to good clinical practices in terms of ensuring that they are communicating everything they're doing to the community that they are targeting, and the researcher will even be able to identify the right target population.
