There but for the Grace of God: An Interview with Epidemiologist Lisa Johnston

In the West, HIV has become a quiet epidemic – one which we vaguely know is ongoing, but because it’s no longer the headline-grabbing horrific threat that it once was, the current state is commonly unknown. Yet, it still impacts humanity on a worldwide scale, resulting in sickness as well as death. Lisa Johnston is an independent consultant and technical expert on conducting surveys on HIV prevalence among hidden populations. We spoke together about the present snapshot of HIV, how you access groups that are shrouded in stigma, and the people that she meets worldwide through the course of her work.

Listen to our recorded interview as a podcast, or read below.

You are an epidemiologist who studies HIV, and while the pop culture representation of an epidemiologist is a scientist in a white lab coat, running around with maybe a face mask or something, on the contrary when I met you the first time, you were talking about meeting with prostitutes and people who inject drugs in a really personal way. What is your job like for you, in the first person?

Hmm. Interesting. Well, I’m definitely not your typical, or stereotypical let’s say, epidemiologist, which does contact investigation, and gets a lot of press, with ebola and all. But I’m a methodological epidemiologist, and so I go out and do surveys, to help understand HIV prevalence and sexual risks of these populations. It’s a really important job, and I get to come into contact with absolutely amazing people. I work mostly with people who inject drugs, sex workers, and men who have sex with men, and also now migrants, mobile populations, and there’s differences in all of them. I particularly like working with transgender people and men who have sex with men, and I have a more difficult time working with people who inject drugs.

Why is that?

Yeah, it’s a good question. I mean, I have so much empathy for someone who is addicted to something. I mean, I can’t even imagine that level of obsession that goes into that. I just heard a story about, from the woman I’m working with in Palestine, that one of the people that injects drugs that came into the survey was talking about how he’s getting married, and the woman he’s marrying is going to serve as a sex worker for him to get money for his drugs. I mean, incredibly creative thinking, but diabolical as well. Really selfish, really obsessive. It’s a horrible disease, and when we don’t have treatment for these people, which is part of what I’m working on, we have this situation. My heart goes out to these people, but I also find them very difficult to understand.

I think that anyone who has been alive during a certain period, like in the late ‘80s, grew up with this idea of HIV/AIDS as a really deadly threat, and it really imbued people’s sex lives with paranoia. That paranoia has kind of calmed down, and now we don’t even see it as something that will necessarily kill you, but it’s not that we hear that much news about it anymore. Where is it now as an epidemic? What is its current snapshot?

Well, it was a really popular epidemic for a while, because people were so terrified of it. We’re on the cusp of a cure, or potential cures are coming out, but those aren’t fully proven. Now that we have the antiretrovirals, and especially in countries where they’re available to everybody, like the United States, people are less concerned about catching it, because they know they can live out their lives. However, if you do start getting sick from it, you get horrible side effects from these drugs. So, it’s less of an immediate threat to a lot of people.

Plus funding is decreasing. It kills fewer people than TB or malaria, so there’s a lot of complaints about that: “Hey, why are you putting so much money into HIV, when TB — which is curable — is killing so many more people, and causing so much more morbidity and mortality?” I’ve seen that too. But we still have certain programs that are important to focus on. And the targets keep changing, like: What we need to measure? What do we need to do? What do we need to focus on? So, it’s kind of been going out of prevention and into treatment. That keeps changing, too. Prevention is more interesting than treatment anyway.

But people are still dying in high numbers, especially in countries where there isn’t access to antiretrovirals and HIV counseling and testing.

Is it at all a factor that people may see HIV as a result fundamentally of vice, given that the greatest at-risk behaviors are sex and intravenous drug use?

Yeah, I’ve gotten that in many countries, including the United States. I remember going into Houston, and the passport control said, “What are you doing here?” I said, “I’m here doing research on HIV and AIDS.” And he said, “Isn’t that a disease spread by gay people?” I said, “No, it’s mostly a disease spread by heterosexual men who are unwilling to use condoms. And as a result of our stigma towards men who really want to be with a man, but have to be with a woman, because there’s people like you judging them.”

Anyway…  I do have my standard responses. I do enjoy those questions. Those stupid questions. But that’s built so much on stigma and discrimination. In fact, my work is dealing a lot now with stigma and discrimination. How do we measure it, and how do we respond to it? Because that is one of the biggest things driving this epidemic. Our stigma and discrimination towards these people. And they’re not the ones spreading it.

Every sex worker, or just about every sex worker, wants to use a condom. Come on. It’s the clients. And if you’re in a desperate situation, you’re willing to take more money to not use a condom. It’s the clients that do this. These are vulnerable populations.

If we don’t have the programs — which is kind of part of my work as well, to figure out which programs we need — If we don’t have harm reduction, which means, saying we know people are going to practice these behaviors and until we have the perfect system where we can mitigate or eliminate these behaviors, we can at least work on them through harm reduction: clean needles and syringes, free HIV counseling and testing, free condoms, and the education campaigns. All this stuff around acknowledging: “Ok this exists.”

We also need programs to help educate those who work with vulnerable populations. For example, if I’m a sex worker, and I go to a doctor to get a regular STI (sexually transmitted infection) exam, and the doctor asks me how many people I’ve had sex with in the last week, and I tell him 97, and he looks at me like I’m some piece of crap on the floor… I wouldn’t go to a doctor ever again! So these people don’t have access to adequate health-care. Non-judgmental.

Tell us more about how you do your work, in terms of your interactions. You developed a specific survey methodology to get more accurate information on these populations, right?

Well, the methodology was developed, I’ve just carried it forward. I was lucky enough to be around when we were really starting to do what’s called “integrative biological behavioral surveillance surveys,” which is what I do, my main thing. So, I go to to countries on behalf of UNAIDS, Global Fund, WHO, and different organizations, and I’m the technical expert to help these countries obtain data that they need to report back to those organizations, in order to plan programs and to prove that there’s a problem, and to monitor HIV prevalence, and other sexually transmitted infection prevalence, and sexual risk behaviors.

I go to the country and work with my counterparts, who are usually government officials or NGOs (non-governmental organizations) if they have them, working on behalf of these populations. To actually implement the survey, we try to use people who are part of the population, because there is a whole screening part. How do you really know a sex worker is a sex worker? I mean, sometimes you know by looking at them, but a lot of times, sex workers look like you or me. Sometimes you don’t know. Or, men who have sex with men… how do you know? A lot of people have stereotypes about a gay person having affect and acting in a certain way, but a lot of them do not.

I want to mention now that you specifically refer to them as “men who have sex with men”, not as gay people. That’s for a reason, right?

Yeah, the LBGTQ population is very fluid, and there’s a lot of identities. So what was happening was, we were doing these surveys in the United States, back before my time, and we realized that using terms like “gay” or “homosexual” ended up missing this whole group of men who didn’t see themselves as gay or homosexual… they were married, they had children, or no one knew that they were having sex with men. And we needed to capture them, because they are the highest risk. Because they’re hiding it so much. And they often meet their partners at cruising sites and more high-risk sites.

Your work is based on surveys of hidden populations. How do you find them?

It’s a good question. I’ll get a little epidemiological on you. There’s a way of sampling a population so that the data you get from them are representative of that whole population, and this is very important. What happens is, the only way you can really get representative data is to do something called ‘simple random sampling’, but you need a ‘sampling frame’, which means you need a list of all the names. Like we could do this neighborhood sample here, and we’d have a list of every household here, and we’d do a random selection of the households, and then in the end, although the population is 15,000, we sampled 150, we’re able to say something about the whole 15,000. Ok? This is because of the way you sample.

These populations, we don’t have lists. So, we have to do something creative. The methodology I use is a network-based methodology. Because people have connections with each other in these populations, and they know each other, we rely on them to recruit each other. But there are some methodological components to it that need to be included. So, for instance, a simple snowball sample would be like this: if we were doing a survey of lesbians, and we’re two lesbians, I select you, and then you would select somebody, and then that somebody would select someone. That’s kind of a snowball sample. The method I use takes into account a snowball sample, but gets rid of all these biases in a snowball sample, so that in the end, even though we don’t have a sampling frame of these people, we’re able to get something that is representative of the network of the population we sampled.

This is not your first career though, so I’m curious how you arrived at an interest in this?

Oh god, it took a long time. I had no idea epidemiology existed. Or public health. Now every time I see a student thinking about what to do, and they want to travel and do something international, they want to do something ‘good,’ they’re a little bit idealistic like me, I say, “public health.” Because there’s great jobs in public health, and really interesting jobs.

I got a Master’s degree in international relations, and I got out of that, and couldn’t find a job. Literally, I had a Master’s degree, and I had to babysit. That was the only job that I could find. I was so depressed. And one of the reasons is, I did international relations because I wanted to do something that was international, but I didn’t speak a foreign language.  So then I joined the Peace Corps, and it was in there that I learned that this field called ‘public health’ existed. Then when I came back from the Peace Corps, I went and got a Master’s in public health. And then when I was getting the Master’s, I realized there was this really cool part of public health called epidemiology, but I didn’t really start doing a lot of that until I did my PhD. So, it took a while to get there.

When you think of your work now, which is embedded in science and sex workers, is this what you thought it would be?

I’m probably one of the luckiest people in the world to have a job that is absolutely fulfilling. It’s super exhausting, it’s very demanding, but it’s extremely rewarding. Oh my god, I get to travel all over the world, meet amazing people, and actually do something that’s making a difference, which is great. I never ever thought I’d be doing this. Not in my wildest dreams did I ever think I’d have a job like this. No, I couldn’t even imagine it.

What is the most challenging part of your work?

Saying no to clients. Saying no to certain jobs that I want to do, but I just don’t have the capacity. I mean I think last year I was coming close to killing myself with all the travel I did. Literally almost 50% travel.

You are a freelancer, you’re an independent researcher, and you’re brought in primarily by government organizations, right?

Yeah, and I’m really lucky because I have an expertise, and it took a while to build, but now I have a real niche so I’ve never had to really look for jobs. They’ve been coming to me for the last fifteen years that I’ve been doing this. As we’ve talked about before, if you say no to one job, it may eliminate other jobs that you would have gotten out of that job. But now I’m at the point where I can choose not to take a job, like there was a job in Sudan that just came up, and I didn’t think I had it in me to go to Sudan, so I said no to that, and then the job in Indonesia comes up, and I do have the energy for that. That’s the hard thing.

It’s sad, and every couple of months I break down and cry about people I meet, or how people have to live with the disease plus stigma plus living in a country that doesn’t treat them very well or provide for them. But what I do also appreciate is that I’m exposed to how most of the world lives, and they don’t live like I do. Not that I live the best way. I don’t want to judge people’s outsides with my insides, in the sense that, because they live in a much smaller house, and it wouldn’t be where I would want to live, and they don’t have a lot of basic needs met, it doesn’t mean they aren’t happy or enjoying life.  But I am exposed to that a lot and I do appreciate it.

Given that you’ve met so many different kinds of people, from so many different parts of the world, what have you learned about people, or their condition?

Oh my god, we are so resilient. Human beings are so resilient. And so adaptive. We can adapt so well to situations. People are really resilient. And I’ve learned that there’s so many of us that go around the world and judge how other people live, like “Oh, isn’t that awful,” or “Oh that’s terrible,” but I’ve had dinner with those people, I’ve been with those people, I’ve been to their homes. And they’re quite emotionally fit, and happy, and have things that bring pleasure to them, and have struggles but somehow are able to overcome a lot of the struggles.

Now, when you’re sick and you don’t have access to medical treatment, and you don’t have enough food to eat, that’s a whole other level.

Is there any unifying feature that you’ve found among happy people?

Yeah, connections. Family. I mean, in Western culture we’re kind of removed from our families, maybe because we have so many other things to fulfill us and occupy us, but when you’re in the day-to-day with a job that you probably don’t like so much and you eat rice every single day, and you don’t have a lot of things that are pulling you in different directions, family seems to be really, really important. I’m not saying it’s not important to Western culture, and I don’t know if my theory that we have different distractions is accurate, since I don’t have a big extended family yet I’m very happy, but for the people that I encounter, it seems like the unifying thing is family and connections.

Are there regional differences that you find as you go to these different places, with regards to how HIV spreads?

Oh yeah, and we have terms for it in epidemiology. WHO has terms like “generalized epidemic”, which means that more than 5% of the general population has HIV. I work with the level where 5% of “key populations” (which are these populations that I work with) have HIV, and 1% or less of the general population has HIV – that’s a “concentrated epidemic”.

There are different ways that it’s spread. In Africa, in many countries they have a generalized epidemic, where a large proportion of the adult population is living with HIV, and in the middle-income countries where I work it’s definitely concentrated, in lower-income countries, some of them in Asia, it’s concentrated. In Africa, it’s generally spread heterosexually, so it’s increasing among sex workers. Africa really — I’m not saying all of Africa, but parts of Africa, mostly east Africa — really pushed back for years against us doing surveys of men who have sex with men, because “They don’t exist!” Yeah… They. Don’t. Exist. So finally we had to convince them that they do, and we know there are about 2-5% of the adult male population are having sex with men, and that’s pretty much a known fact.

Now in Eastern Europe, a lot of it is spread by people who share used needles and syringes, and paraphernalia for injecting.  It’s changing quite a bit in different areas, and it’s a mix. In Vietnam, it’s a mix of people who inject drugs, sex workers and men who have sex with men — all three groups are pretty equally transmitting the disease. So yes, it does definitely differ by regions or countries.

For a better background understanding of how these different pieces of research fit together, you’re in a branch called surveillance, right? How does that fit into the bigger picture?

Basically, the country gets funding from Global Fund or some other entity, and in order to keep getting funding, they need to report on their progress. This integrative biological behavioral surveillance that I do are studies that we conduct and repeat every three years to monitor change over time. It’s expected that you have a rigorous sampling methodology (mine is respondent-driven sampling) and that you repeat these surveys using the same protocol and same sampling methodology, and from that we can see trends: Are we increasing or decreasing HIV? Are we increasing our program coverage? Are we increasing our HIV counseling and testing? Plus we try to do estimations of the size of the population, which is really hard to do, because there’s no sampling frame.

So, the countries get funding, and then they need to produce these data to report to WHO, UNAIDS and Global Fund or whomever, and the country normally owns the data and it’s a matter of analyzing it and getting it back to these organizations to keep the funding going or to change programmatic direction. They need to determine what to do with the information. So they also use it internally to get funding to develop programs, like: we need to have programs that are sensitive to sex workers, or we need to have needle exchange programs for people who inject drugs, or things like that.

Are there still shortcomings for this type of research?

Oh god, there are so many shortcomings. It’s really, really difficult to sample hidden populations. There’s a lot of biases. I work with a team and — we do this on our own time — to help improve the methodology, we built a whole analysis program that’s user-friendly and open source, so it’s free to people.

I mean, my whole thing is I’m trying to work myself out of a job. I’ll never do it, I’ll never be able to do it unfortunately, but we have something called “build capacity,” and I like to build capacity to the point where they don’t need an outside international consultant to come in and do it. But there are major flaws with doing that, because the people I work with change jobs, new people get hired, and people in some cultures aren’t really rigorous, that is, some cultures don’t pay attention to detail the way you need to, for this type of methodology to work. They don’t know the analysis. There’s all these gaps that make it impossible for me to work myself out of a job, but some countries have improved, and they’ve taken it on themselves. I also wrote a manual, a really user-friendly 300-page manual that gave step-by-step instructions of the methodology, and I think that’s helping a lot of people.

Since you’re studying an epidemic, if it were cured, would you fundamentally be out of a job? Would that be your goal?

Even when there are cures — like TB has a cure — people still get it. Let’s think about TB as an example. You have to take a lot of medication for a long time. I used to work in TB quite a bit, and what happens with that is that the people who get active TB are usually really poor, in vulnerable populations like migrants or people who use drugs in close proximity to each other, and people who live in horrible housing situations, like homeless people. So, people who have low immunity. These are people that have a really hard time sticking to a 6-9 month regimen of medication. And so they never get cured. What this means is that just because there’s a cure doesn’t mean that it’s going to be practicable. That people are going to be able to do it, and that we’re going to be able to reach everybody. People who are in a situation to be very responsible aren’t usually those people who have active TB.

People like that might have HIV. There’s a lot of people who have HIV that are not vulnerable populations, and they might be do well on some kind of cure regimen, if it were similar to the TB regimen.

What do you wish that people knew in general about HIV and the way it’s spread and carried?

It’s not easy to get HIV, but it’s easier for some people to get HIV. I’m not a religious person, but I sure do like this quote of, “There but for the grace of God go I,” and that’s something that I’ve really learned in this work. If people could practice that more, in thinking about people living with HIV, instead of being like, “Oh you have HIV? You slut!” or “What did you do to get that?” And you do have to do something to get it, but just the lack of compassion by so many people and the ignorance… I wish people would just try to understand that some people aren’t as lucky. It’s usually the people coming from religion, looking down on others because they don’t follow their religion, or people who live comfortable lives and have everything they need. It’s all kinds of people judging others but they don’t understand the whole story, they’re just reacting based on what they know, and what they think is right. Human beings are very, very complex, and unpredictable. But walk a mile in someone else’s shoes and then say something.

To learn more about Lisa Johnston and her consultancy and teaching work, visit her website.