Health and Human Rights: A Conversation with Dr. Laura Ferguson

https://doi.org/10.56927/337782

Interview by Ella Wesson

Laura Ferguson is an assistant professor of preventive medicine at the University of Southern California, the director of the Program on Global Health & Human Rights and the director of research at the USC Institute on Inequalities in Global Health. Her research focuses on understanding and addressing health system and societal factors affecting health and the uptake of health services as well as developing the evidence base of how attention to human rights can improve health outcomes.

EW: Would you mind introducing yourself and telling us a little bit about what you study and teach?

LF: Sure. My name is Laura Ferguson and I'm the Director of the Program on Global Health and Human Rights and the Director of Research at the Institute on Inequalities in Global Health at the University of Southern California.

In terms of my research, I really look at how large scale forces—things like laws, policies, structures, systems—how they affect people's access to healthcare and people's health outcomes. Then, of course, once you identify what the issues are, how do you try and improve them? So how do you improve laws, policies, and systems to then try and improve people's health. I focus on hard-to-reach, marginalized, often criminalized populations.

In terms of my teaching, I teach an undergrad course on an introduction to global health. At the graduate level I co-teach a class on global health governance in action where I take a group of students to Geneva every year and we spend a week visiting organizations like the World Health Organization, Doctors Without Borders, and the Global Fund. Then we spend a week participating in the World Health Assembly, which is the annual forum where all the governments in the world come together and set global health priorities for the year ahead.

EW: Can you offer some insight into the connection between HIV and human rights?

LF: Absolutely. It’s a complex relationship. One of the first and maybe most obvious things to say is that people living with HIV disproportionately have experienced human rights violations. So, if you take, for example the workplace, certainly historically we've seen people losing their jobs or not getting jobs on account of their HIV status. I think there's a risk that, because of discrimination, we see a lot of rights violations among people living with or assumed to be living with HIV.

But there's also the flip side, which is that rights violations can make people more vulnerable to HIV. We learned really early on in the global response that the HIV response has to be human rights based. If you think about HIV testing, there was a time when sex workers would be rounded up off the street and forcibly tested for HIV, and that was considered a public health measure. But if you start doing that to sex workers, they lose all trust in the public health system, so they're never going to come back. They're never going to seek the kinds of services you'd want them to seek, whether that's for health in general or if they were to test positive for HIV to access care or treatment. That's a lifelong treatment regimen, but if you've been put through those kinds of rights violations, it's unlikely that you're going to keep coming.

So there are these two things. We know that if an HIV response is rights based, if it's based on issues like counseling, confidentiality, quality of care, and accountability, we know that that's much more acceptable to clients and is more likely to promote a good HIV response.

EW: You recently worked with the United Nations Development Program in sub-Saharan Africa on a project about HIV, human rights, and the law in the region. Could you give a brief overview of your work there?

LF: With pleasure. I was leading an evaluation of work that had been implemented by UNDP—the United Nations Development Program—that was focused on improving HIV-related legal environments in 20 countries across the region. It's amazing, they had worked with a range of partners—governments, civil society organizations, affected populations—to really try and strengthen laws and policies around HIV. This had gone on for years, and so my job was to assess not only how well this had worked, but what had worked and why or why not with the hope that by understanding processes of change and common challenges and success factors, we could help inform other work to improve legal environments.

For me it involved a lot of working with my team and again with in-country partners. We did a lot of legal and policy analysis to see what had changed over the years and a lot of qualitative work to understand those processes of change from what the trigger points of change had been, what the challenges were, and how those were overcome. Then we try to extrapolate lessons across the 20 countries to see how we could try and make those lessons useful for other places, and by the way, the project was amazing in terms of what it managed to achieve. It's very fun to evaluate projects when they've had a lot of positive impact.

EW: One of the proposed plans of action when you're looking at these laws was to repeal discriminatory laws. You've mentioned inheritance laws, laws affecting access to HIV-related services, and laws criminalizing consensual sex between adults and sex work, among others. What are some examples of these laws that you've seen in these countries and how do those impact human rights?

LF: We can start by looking at sex between men which is criminalized in many countries around the world, not just in sub-Saharan Africa. That's a real barrier to people accessing services. If you have men engaging in anal sex and they have an anal STI but they know in going to the health facility either the health worker is going to just kick them out because they disapprove of the behavior or, even worse, they could call the police and ask the police to come and arrest this person. There’s a real barrier there in terms of accessing any type of health service.

We see the same for transgender populations. In many places, cross-dressing is illegal, so for trans people, even going out on the street they are at risk of violence, of harassment, and of arbitrary arrest. And again, you could put that also into a health context that they might not be particularly comfortable going into healthcare settings. Especially if you think about trans men going in for a gynecological checkup, there can be some really uncomfortable situations there.

If you think about people who use drugs, drug use is criminalized in a lot of places, but we know that if people have access to clean needles and syringes, it's a much safer way of using drugs. But if you're afraid you're going to be arrested if you turn up to get your clean needle and syringe, then you might not go so there's a higher risk of HIV transmission. None of these are health specific laws, but they are laws that criminalize the behavior or identity of certain populations that then make it really difficult for them to access health services that could be a real benefit to them.

EW: How do justice systems which vary from country to country play a role in HIV-related human rights, and what do you believe are the best courses of action to address those issues within the systems?

LF: Law has a huge role to play in the HIV response and we've seen that when you have good laws in place, laws that protect people from discrimination, laws that promote equal access to services, they can be really supportive of an HIV response, and it can help with HIV prevention efforts. It can help with rolling out treatment efforts and then, when you have these laws that create barriers in place, it can be a real impediment to the HIV response.

And as you've noted, legal systems vary by country. If you think of sub-Saharan Africa, most of the English speaking countries have similar legal systems as a result of being colonized by the Brits. In most of the French speaking countries, the legal system is shaped by having been colonized by the French. But those two systems are very different from one another, so it is really important to understand that going into this work.

I think even more important than that is to recognize that, whatever the shape of the justice system, it's made up of people. It's really important to understand who all the different people involved here are and what their roles are because it may be that there's a problem with the law and that the law needs to change, in which case it's important to work with parliamentarians because they're the ones who make laws It may be that there are issues with how the law is interpreted, in which case you want to talk to the judiciary and interact with the judges. It may be that the issue is with how the laws are being implemented, in which case it's the police you need to work with.

Likely there's issues across all of those and you need to work with them all in different ways. It's very easy to see law and a justice system as this monolith that's up there in the ether somewhere, whereas if you can reduce it to the people who make it up, I think it becomes a much easier entry point for action.

EW: You state that an important first step to ignite change in environments where HIV-related human rights are in jeopardy is through government-led comprehensive dialogue. How have these discussions held in the past helped to start a conversation about legal change?

LF: There are two really important things that you said in your sentence. One is government-led. It's really important that governments are on board with this. Laws are made by governments, so ultimately you need them on board to make any sort of legal change happen. The other thing that you said is comprehensive. There's so many people who have to be involved in this kind of large-scale change. In the UNDP work that we talked about a little bit earlier, there was a huge effort made in terms of bringing together government officials—that would include parliamentarians, Ministry of Health Officials, police, judges, health workers—with people most affected by bad HIV laws. That would be people like men who have sex with men, sex workers, people who use drugs, and transgender people.

If you can create a safe space and get all of these people to really see each other as people, not just as the authority figure who does nothing but harass or not just the person who engages in a behavior that I don't approve of, but if you can get them to see their respective humanity and understand how people's dignity is shaped by the law, it becomes a very powerful tool for change.

One very concrete example of that was when a few of these were held in the Democratic Republic of the Congo. It was really the first time for many of these affected populations to be in the same room as government officials and so there was some capacity building to help them speak up in that situation which can be pretty intimidating. By the end of the meeting, they were talking about the importance of lubricants for gay sex and although this had never been on the agenda before, the men who have sex with men were very explicit about it and why this was so important for them, for their pleasure for their safety. By the end, condoms and lubricants were put on the essential medicines list for the Democratic Republic of the Congo, which is huge.

That kind of dialogue where you can just see people as real people and learn how law really does affect people's day-to-day existence, I think that that can be very, very powerful.

EW: This work that you did in sub-Saharan Africa can certainly serve as a model for change around the globe. What is the best way to scale these techniques that you used with the UNDP to this larger platform?

LF: I think a lot of it is about documentation and dissemination. People have to know what was done, why it worked, and what happened as a result. That's partly why I'm so interested in doing this kind of real-world evaluation work, because you can then think through some of these issues of how do you scale this up and make it real. For that, well we've actually already seen some of the pieces of the work being replicated organically in other regions.

The regional judges forum, that's already being replicated in Eastern Europe and Central Asia, and in the Caribbean. We've also seen it being picked up by people working on human rights-based drug policy around the world and how some of the same methodologies that we used can be implemented to improve HIV-related legal environments and drug-related legal environments.

So, I do think there's a lot just about getting the word out there. Part of that is academic publications, but that can't be all of it; it's got to be reaching decision-makers, policymakers, and affected communities who might be advocating for change. Then, it is important to figure out what the pieces of this are that are transferable and what do you have to tailor for local context and culture, different legal systems and epidemiology, and all of those things. It's definitely a process, but I think there's a lot of very exciting potential.

EW: Are you involved in any of this work as a continuation of this program or anything similar.

LF: I am. I'm advising on the drug policy work that's happening. Last year just before the COVID pandemic there was a regional consultation in Mexico City for the Latin America region which was fantastic. We got all these different stakeholders from around the region who wanted to discuss how we respect the human rights of drug growers, drug users, and drug suppliers and protect the public health of people around the continent. It is just an amazing discussion to be having with all these constituents in the room, these high level drug policy makers. We did the same thing virtually in Southeast Asia a couple of months ago, and it's great to see traction around these issues and to see people really trying to figure out how we can make rights-based policies that can help protect public health.

EW: Is there anything else you would like to add?

LF: People often think of health as what happens in the health system and medicine, but our lives are shaped by so much more than that, and unless we get the laws right, the policies right, the systems right, unless we reach all of these different stakeholders in a real human way, I don't think we can shape the environment that we need to get health right. I think you know, even with the best medicine in the world, the best technology in the world, unless the laws and policies and structures are in place to translate that into reality, we can't get where we want to be.