Scientific Activism & the Future of Global Health

A Conversation with Dr. Alex Coutinho

When I met Dr. Alex Coutinho it was his first day at Inshuti Mu Buzima, the Rwandan office of Partners in Health, and he began his tenure by inviting questions from every member of the staff. The amount of work left to achieve global health equity led him to leave retirement and accept the role of Executive Director of Inshuti Mu Buzima in September of 2015. Recipient of the Second Hideo Noguchi Africa Prize, former head of the Ugandan NGO The AIDS Support Organization (TASO) and former Executive Director of the Infectious Diseases Institute (IDI) at Makere University in Uganda, Dr. Coutinho has spent his career influencing the direction of health care and treatment in East Africa.

Throughout that time, Dr. Coutinho has never stopped looking for answers to the key questions of global health. As a Global Health Corps fellow, Dr. Coutinho has taught me not only to face the most difficult questions about my work but also to truly understand what constitutes a satisfactory answer. He sat down with me in December to give answers to my most pressing questions and graciously shared his insight on the role of evidence in global health, the struggle for equity in activism, and his best advice for young leaders in global health.

Jillian Dunning: I’ve often heard you use the term “scientific activism” to describe the approach here at Inshuti Mu Buzima (IMB). Could you explain how you define that term and what it means for you in your work?

Alex Coutinho: Well global health is about change, essentially. You’re trying to make a change to ensure that at a global level there is a movement towards better health — both preventing disease and managing disease. Global health mainly came about because of global inequity, part of the world had diseases that the other part of the world did not have, and global security, or the potential threat that diseases can have through pandemics. Global health started with the recognition that we could not continue on a pathway where parts of the world have very poor health and parts of the world have excellent health. But we also have to recognize that inequities exist even within countries like the United States itself. There is a whole agenda for global health but there are many health issues within developed countries.

“Global health started with the recognition that we could not continue on a pathway where parts of the world have very poor health and parts of the world have excellent health. But we also have to recognize that inequities exist even within countries like the United States itself.”

So, back to scientific activism. How do you change these inequities? Well, you bring about change through evidence. Evidence is powerful and it’s difficult to argue if the evidence is genuine and has been tested and repeated. PIH is about science; we’re a research and academic organization with our roots in Harvard. Everything we do we try to measure it and see the impact. So that’s the science piece, but science alone does not change things. With HIV for instance, we knew that there were medications that would save lives in America or in Europe, but the same medicines were not available in Africa because of price, and lack of access to laboratories and lab tests. So the second piece of change is to say the technology that is available elsewhere should also be available to the poor. This change happens only through activism, driving change by bringing the problem to the attention of the media, politicians, and policy makers. And that’s why HIV was such a powerful example because HIV-positive people took it upon themselves to learn the science. They were not scientists, most of them, and they took it upon themselves to learn the evidence behind HIV. And then they used that science to advocate for saving their own lives. I was a part of that scientific activism, and that’s how we were able to bring about change in the way HIV is managed. The same principles can be used for a wide range of other diseases.

You can take any area, and you could just be an activist or a scientist and people will listen to you. But if you can combine the two, people will listen to you and change should be easier. The question is how do you get activists to understand science better so that they don’t stumble when people ask them for evidence? And how do you get scientists to learn how to be activists so that they leverage the power of mobilization and speech? The power of advocacy comes from numbers, a just cause, and evidence. That’s my take on scientific activism.

JD: When we talk about evidence, especially in a sector like health systems strengthening, there is a great deal of nuance, while a field like activism prizes a simplified message that can be used for mass communication. How do you find a balance between sending a clear message that can be easily understood without compromising details that make an issue truly representative?

You don’t have to publish advocacy in the New England Journal of Medicine, it’s not intended that way. You are trying to distill complicated science into a couple of lines, but even those two lines need to be defensible. So, “AIDS kills”. That’s a simplistic message, but all the science tells us that AIDS kills. AIDS kills without antiretrovirals is a simple message and most people will get it, but there is science behind it to prove it. Sometimes we’re trying to be too scientifically correct and then our message becomes preaching to the converted and we’re just speaking among ourselves. So you’re not trying to give people false information, but instead to give a message that’s understandable and whichever way you look at it is generally defensible by scientific evidence.

JD: As someone acclaimed for transforming HIV care in Africa, what strategies have you used to redirect the global discourse away from stigma, discrimination, and misperceptions of HIV towards a discussion based on fact and evidence? How were you able to change that conversation?

AC: Well, with HIV the foundation of all of that was engaging with HIV-positive people themselves. I think simple things — hugging HIV-positive people, being seen in public with them, eating with them — first helps to provide an imagery, but once HIV positive people themselves were empowered to speak about their lives and what HIV has done, and for those whose lives have been saved by antiretrovirals, their stories can show the before and after. It’s a very powerful message for change and de-stigmatization. Most of the stigma around HIV is actually around the fact that people are dying, and that was the problem for anyone who said they were HIV-positive — we saw them as death in progress before ARVs.

There is still stigma around how people perceive HIV, particularly in key populations, around men who have sex with men (MSM) and around sex workers, so there is a moral judgment about people’s lifestyles that also causes stigma. That’s another layer that you have to work hard to destigmatize and make sure there is change. We try to use science, but sometimes science on its own is not enough. We’re starting to see a movement towards scientific activism to ensure that more research is carried out and that research is translated into better technologies and better medications, and that they are made available to people who need them. But more of this approach is needed.

JD: How can you tell when you’re speaking louder than the people you’re representing? A lot of people struggle with this problem of how to be an ally to a group they don’t belong to without appropriating their narrative? How do you navigate that challenge?

AC: Scientific activism works best when you can speak with the people you are advocating for, but there are cases where the people you are speaking for are so disempowered that they can’t use their voices. Let me give you the example of mental health. They may not always be able to speak for themselves about what is afflicting them, or they may not wish to speak for themselves because the stigma is too much. And in that case, you may have to initially speak for them until you get a critical mass of people that you may speak with. The other aspect of this is you need to truly understand what the people you are speaking with want. What are their aspirations? What’s fair?

In the early days of HIV, we gave antiretrovirals to prevent mother-to-child transmission and once six weeks had gone past we stopped giving them treatment. So the baby would survive, but often the mother deteriorated. An understanding that this was not right needed to be part of that community in order to truly understand what was required. We have to be careful of what we are saying on behalf of someone else, that it’s not what the community doesn’t want, but there are exceptions to that statement.

JD: Thinking about global health now, what are the areas that suffer most from a lack of scientific activism? Where do you believe are areas where we need more evidence in our discussions and interventions?

AC: Nutrition. Mental health. The link between environment and disease. Sadly, still maternal health. And there are still a lot of neglected tropical diseases that belong to that word neglected. That’s the top of my list.

JD: How can young leaders in global health best use their voices and their time to promote this approach of activism with evidence? How can they best lend themselves to being champions of the poor?

AC: They need to study what worked, and how science, evidence, advocacy, and mass mobilization work. They need to see how that can be utilized in new settings, and to work with new forms of media. And they need to be curious, not just accept things as they are. They should not see this as a “their” problem and an “our” problem. As I said, there are significant global health problems even within a developed nation such as the United States. And I think spending time like you have here in Rwanda [as a Global Health Corps fellow] is an eye-opener. You can read all these things but it’s very, very different when it’s a part of your life and you see this as a daily reality. So more global exposure and immersion in another culture.

“They need to study what worked, and how science, evidence, advocacy, and mass mobilization work. They need to see how that can be utilized in new settings, and to work with new forms of media. And they need to be curious, not just accept things as they are.”

JD: What advice do you have for professionals in the global health space? What advice would you have liked to be given when you were just starting in your career?

AC: Be curious about what’s going on in the rest of the world. Take time to understand beyond the headline why certain things have occurred, and try to figure out what kind of solutions would really make a difference. The historical and geographic determinants of diseases are very complex. And when you study global health or public health, you understand that improvements in health started long before antibiotics and vaccines merely by changing how society lived. That tells you a lot about some of the starting points for a country like Rwanda. Perhaps I should have known that. When I became a doctor I thought I could save the world just by treating patients, and so that broader perspective is useful.

This interview has been condensed and edited.

Jillian Dunning is a 2015–2016 Global Health Corps fellow at Partners in Health in Rwanda. All GHC fellows, partners and supporters are united in a common belief: health is a human right. There is a role for everyone in the movement for health equity. Join the movement today.

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