Put people first

This special episode of HIV unmuted, the award-winning IAS podcast, marks World AIDS Day, which has taken place on 1 December every year since 1988. On this day, we remember the people we have lost, reflect on how far we have come, and rally together to strengthen our resolve in the HIV response.  

The latest UNAIDS data from 2021 shows our approach must change: 70% of new HIV acquisitions globally occur among key populations (gay men and other men who have sex with men, people who inject drugs, sex workers and their clients, and trans people) and their sexual partners.  

If we are to ever really tackle the persisting inequalities that fuel the HIV pandemic, we must put people first.  

In this episode, we expand upon the UNAIDS theme, Equalize, by looking closely at addressing the continuing inequities in the HIV response in a context of limited resources. At a time when we have colliding pandemics, the climate crisis, and rising fuel and food prices, our guests share what takes to put people first. 

Meet our guests: 

• Yvette Raphael is the Executive Director of Advocates for the Prevention of HIV in Africa. She tells us how important World AIDS Day is to her personally and calls upon the scientific community to put people first in HIV research.  
• Peter Sands is the Executive Director of the Global Fund to Fight AIDS, Tuberculosis and Malaria, one of the largest funding mechanisms in global health. He talks about the ‘pandemics of the poor' and explains how putting people first must be an approach, starting with what is being funded.  
• Gastón Devisich & Romina Mauas are a client and healthcare provider from the IAS Me and My Healthcare Provider campaign. Gastón nominated Romina for being a healthcare champion who made a tangible difference in his life by putting him first in the face of discriminatory practices and belief systems. 

Transcript

Femi Oke:

Welcome to HIV unmuted, the IAS International AIDS Society's podcast. I'm your host, Femi Oke. This special episode marks World AIDS Day, which takes place on December the first, every year since 1988. It is a day when we remember all those we have lost reflect on how far we have come and rally together to strengthen our resolve in the HIV response.

News Story:

This is World AIDS Day and it has been marked by special events to draw more attention to aids

News Story:

The World Health Organization set aside this day to focus on what is being done to fight this disease. And the problem.

Femi Oke:

If we are to ever really address the persisting inequalities in the HIV response inequalities that drive the HIV pandemic inequalities that affect the most marginalized and the most vulnerable, we must put people first. The latest UN aids data from 2021 shows our approach must change with 70% of new HIV acquisitions globally occurring among key populations and their sexual partners. These are gay men and other men who have sex with men, people who inject drugs, sex workers, and their clients and trans people. At a time when we have colliding pandemics, a climate crisis, rising costs of fuel and food prices globally, how do we put people first in the face of these competing priorities? We speak to Peter Sands, executive director of the Global Fund to fight aids, tuberculosis and malaria. It tells us why we can't afford not to put people first in response to pandemics now and pandemics of the future. We also speak to Gaston Devisich and his healthcare provider, Romina Mauas, who are living proof that you can put people first in the healthcare system and in the face of stigma and discrimination. But first we speak to Yvette Raphael from South Africa. Yvette is executive director of advocates for the Prevention of HIV in Africa, who calls on the scientific community to put people first in HIV research. Yvette shares with us how important World AIDS Day is to her personally.

Yvette Raphael:

In 2001, when I was diagnosed with HIV, uh, I just found that I couldn't find anybody like myself around me who can, who I can talk to, who is openly living with HIV. Doing work on world AIDS stays very, very important for me because my own disclosure or advocacy journey started when I stood up in front of my colleagues 80 in a boardroom supposed to be celebrating World AIDS Day. It was also kind and tongue in cheek because at the time there was a lot of denialism. There was an almost no help for people living with HIV and our president didn't believe in it. And I, I, I needed to express myself. I just had a baby the previous year, so I needed to be sure that I'm not going to lose my job.

Femi Oke:

Yvette has come a long way since then and now works on person-centered care. We asked what that means to her.

Yvette Raphael:

For me, it's more about an approach where the person is supported and also when you lead your own, how your treatment is going and how you want to be treated. At the time, the doctor really, really looked at my situation. He also advised me around the best treatment. He also spoke to me about how I should let the medication fit into my lifestyle. I was 25 at the time, so I was very young and he actually asked me how this would fit what this every 12 hours would mean for me. Would I be awake? Would I be out partying? Would I be at home? Would I be working? And we made that decision together.

Femi Oke:

Yvette now advocates for practical ways to put people first to improve research trials.

Yvette Raphael:

We don't look around the, the structural issues that affects this person. Putting a person first is asking what works for them and actually taking them through the journey as you start conceptualization of any study and including them at any process. If a trial participant tells you, you making us come to the trial site to get an injection at five o'clock, but meantime, my taxes only starts at four o'clock or at four o'clock and it's a long drive, how do we listen as researchers?

Femi Oke:

It goes beyond getting good data. Putting people first requires a much more holistic approach.

Yvette Raphael:

We all know what community engagement is about. It's more than just a tick box or a nice to have, or it has to stem from a mutual respect and acknowledgement of the other person. I think most of the time the researchers are from the north and they work very little with researchers in the communities. And that is where the problem lies. So when the communities express themselves, their inputs are not really acknowledged.

Femi Oke:

Yvette has a solution for how we address this issue.

Yvette Raphael:

We need to start looking at how do we ensure that researchers look like the trial participants, right? The same color, same background from Africa.

Femi Oke:

But we also need to be mindful of the reality of why people participate in research trials.

Yvette Raphael:

We must get over the, this notion that people participate in trials because they want to change the world. That is cannot be the reality where there's so much unemployment, so much poverty in South Africa. We need to be fair and say people are looking at times looking at this research as a way of making a living.

Femi Oke:

Putting people first needs to be an approach, not just a tick box exercise.

Yvette Raphael:

Obviously the design with the ultimate aim in mind should be, it should be people centered. We need to consider from the beginning the programmatic hurdles that will need to be overcome. When we do studies, especially around global access, pricing, manufacturing and the role of lower and middle income countries, we cannot start only start worrying about Christ. When you've already done the research on Africans, now you're sitting with an injection that costs my whole year's groceries for me to prevent HIV and you sitting with that injection,

Femi Oke:

And it's not just scientific research where we need to put people first. It needs to be across the whole HIV response, starting with what is funded and where that money goes. Who better to speak to than Peter Sanz, executive director of one of the largest funding mechanisms in public health, the global fund to fight aids, tuberculosis and malaria. Peter, this World AIDS Day is all about putting people first. Could you tell us what it means to put people first at the Global Fund?

Peter Sands:

Well, I think the ultimate metric of any health intervention is what it means for people. I'll use one country as an example. Malawi, if we go back to 2000, life expectancy in Malawi was 46, roll the clock forward 2019 and life expectancy is in Malawi was 65. So in a 19 year period, life expectancy increased by 19 years. Now at one level, that simply means a lot of lives have been saved. But actually it's more fundamental than that. A society where people can expect to live to 65 is a very different society from one in which you can only expect to live to 46. For one thing, you have grandparents and two thirds that extraordinary increase in life expectancy in Malawi was due to the reduction in mortality of hiv, TB and malaria. So what we are doing is transformational. We're saving lives, but we're also changing the very nature of the societies that people live in. That is an extraordinarily exciting thing.

Femi Oke:

These are impressive achievements. Could you tell us a little more about how people and communities are put at the center of the Global Fund strategy,

Peter Sands:

The commitment to putting people at the center? Our, the strategy has a number of different dimensions. I think the first is, is around people centered services. We need to deliver healthcare services in the way that it makes sense for individuals at the time. It makes sense. A second aspect of putting people in communities at the center revolves around ensuring that key populations most affected by HIV/AIDShave a stronger role and a stronger voice that they shape design and deliver the services to protect and support them. And then a third aspect that I think is also really critical is around addressing the inequities, the human rights barriers, the gender inequalities that actually get in the way of fighting all three of the diseases, aids, TB, and malaria. If turning up at a clinic is likely to get you arrested, you're not gonna turn up at a clinic. Unless we go beyond the purely biomedical and address the structural issues that make people and communities more vulnerable to disease, we're not gonna win.

Femi Oke:

You talk about aids, TB and malaria, the global fund has been responding to all three for some years and also pivoted to working on the COVID 19 response In light of competing priorities and limited resources, what does an equal person-centered response to HIV and other pandemics look like?

Peter Sands:

But there's also a deeper question about the equity with which we respond to pandemics. We use the language of pandemic COVID 19. We actually don't tend to use the language of pandemic so much for aids, TB or malaria. We tend to talk about ending the epidemics of HIV, TB and malaria. And what is going on there frankly, is that we use the language of pandemic when the people living in rich countries are at risk and when they become less at risk, we tend to start talking about endemic or epidemic disease. It's just a pandemic of the poor.

Femi Oke:

You've talked about the inequities that drive pandemics. What is the global fund doing to address these inequities and what you call pandemics of the poor?

Peter Sands:

The whole point of the global fund was to ensure places which couldn't afford the newest tools, the newest drugs ever access. And that spirit still drives the way we approach car allocation model. So we give most money to places with the highest burden of disease and the least ability to fund the response themselves.

Femi Oke:

So what do you want to see for the future of the HIV response?

Peter Sands:

I want to be in a position where we actually don't really need a global fund, becasue that would be an extraordinary place to have got to.

Femi Oke:

We speak to our next guests, Gaston and Romina from Argentina, who show us how to put people first and deliver quality healthcare. Romina received the IAS Me and My Healthcare Provider Award created to recognize all those healthcare providers around the world who deliver quality care to key populations in the face of stigma and discrimination gas on nominated Romina for the award gas on. Can you tell us about the first time you and Romina met?

Gaston Devisich:

We didn't have a great start when we met, I was in complete denial about my diagnosis and I was attempting to have a third, perhaps fourth confirmation test because I was surgeon that something else had been wrong with me and was causing my HIV test to come out possibly.

Femi Oke:

What made you go back? What did she do that was different from your previous experiences?

Gaston Devisich:

I progressively transitioned to find an ally in her rather than an enemy. I cannot really pinpoint a moment in time in which we became friendly, but appointments started to last longer. Decision making started to get more horizontal and advocacy became a welcome topic in conversation. If there's something that she wants to perhaps propose to me, she doesn't just like impose it.

Femi Oke:

What did it feel like to have someone center treatment and care around your needs?

Gaston Devisich:

Well, it made me feel seen and taken into consideration. People want to feel understood, especially when they're dealing with something like HIV. We rightfully have a lot of questions and we end up receiving care that can be often dehumanizing. Finding adapter that responds to what you need is truly a breath of fresh air is like finally someone's on your side.

Femi Oke:

Romina. When you give care, how do you put people first? Despite stigma and discrimination?

Romina Mauas:

First, I acknowledge that sigma and discrimination, it harm their health. And uh, also it's a barrier from using health and other essential services. The stigma, discrimination people and co clinics, uh, and hospitals sometimes, uh, tend to reflect general attitudes, uh, in society. So when I give care, I try to have an empathic listening during the interview. Uh, using a person centered counseling style that includes collaboration, a patient autonomy and shared decision making.

Femi Oke:

Does the healthcare system you work in support your efforts?

Romina Mauas:

In my country it's difficult. Physicians rarely receive training on patient centered communication techniques after medical school. Um, typically we must develop communication skills on our own in the healthcare system. Um, we have less and less time to devote to our training and the medical interview sometimes with many administrative requirements and with poor salaries. And so doctors run with between two or three jobs to obtain a living wage. So nowadays I think it's, uh, difficult to have this approach

Femi Oke:

Gaston. Why is it so important for healthcare systems to put people first?

Gaston Devisich:

In reality, our health outcomes are not defined by our willpower alone, but with the chance of overcoming stigma and equalities and health and development as well. Science has generated a lot of innovation in the last four years. However, these are not truth that apply equally to everyone. And the best science in the world cannot compete with the debilitating effects of poor healthcare systems and poor service provision.

Femi Oke:

Romina, what advice would you give to other healthcare providers who would like to put people first? Like you did?

Romina Mauas:

Learn how to ask open ended questions, supporting optimism, listening, reflectively, and also to unlearn behaviors and strategies such as persuading or directing or confronting, we must open our mind. And a stigma discrimination is intersectional you. They, they don't receive stigma discrimination only because the HIV titles, because, uh, their age, their gender, their sexual identity. We must work together and I have so much to learn from my patients.

Femi Oke:

As you've heard from our guests. If people don't start coming first in every aspect of the HIV response, the inequalities driving the HIV pandemic will only intensify v healthcare's. Work with communities most affected, strives to put people first in the HIV response.

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We won't stop until ambition becomes success. And the impossible becomes achievable until our research offers more ways to treat, prevent, and hopefully one day cure HIV. Because we are healthcare here until HIV and AIDS are not

Femi Oke:

This World AIDS Day, we ask you to examine how well your strategies and programs put people living with and affected by HIV first at all stages of your work.

Yvette Raphael:

You cannot do research without putting the people that you're going to say you're doing research on first.

Femi Oke:

In policies in healthcare, in scientific research, in language, in engaging communities, it's clear we must put people first if we are to ever really address the persisting inequalities in the HIV response. I'm Femi Oke for the IAS, International AIDS Society's podcast, HIV unmuted… and you can't keep us quiet.