Igniting passion for the long haul

Linda-Gail Bekker talks about how she came to work on HIV and shares her thoughts on an evolving field.

By Kristen Jill Kresge

The story of HIV/AIDS is still being written, but it is already a page turner. “I have a 16-year-old son, and I am constantly telling him that his generation will marvel at what has been done and what has been learned. It has been a historic story,” says Linda-Gail Bekker, deputy director of the Desmond Tutu HIV Centre at the University of Cape Town in South Africa.

A significant part of that historic story has played out in Bekker’s home country. South Africa remains the epicenter of the HIV/AIDS pandemic. It is where 19 percent of the globe’s HIV-infected individuals live and where 15 percent of the new HIV infections occur on an annual basis, according to data from the Joint United Nations Programme on HIV/AIDS or UNAIDS. It is also home to the world’s largest HIV treatment program, 80 percent of which is funded by the South African government.

This was not always the case. The picture in South Africa was much more dire before the 13th International AIDS Conference took place in Durban, South Africa, in 2000. This conference marked a turning point in the global response to HIV, and particularly changed the landscape for treating and preventing HIV in South Africa. This also happens to be the year Bekker returned to Cape Town after finishing her PhD studies.

From that momentous time point on, she used her training both as a physician and as a researcher to confront the country’s epidemic. She helped fight for, and then was able to witness firsthand, the life-saving benefits of antiretroviral treatment as it reached more and more of the nation’s HIV-infected individuals.

In 2004, Bekker and her then husband Robin Wood joined their efforts and created the Desmond Tutu HIV Centre, of which he is now the director. They have worked side by side since then in diverse communities, in HIV prevention and treatment, as well as in other infectious diseases, including tuberculosis (TB). 

Bekker remains a steadfast advocate for the need for an HIV vaccine. She has chaired vaccine trial protocols and recently joined IAVI’s Board of Directors. Since 2017, Bekker has also served as the President of the International AIDS Society, the first African woman to hold the post. 

As she prepares to open the upcoming AIDS conference in Amsterdam this July, she reflects on how important it is that a new generation of young doctors and researchers pick up the fight that she and countless others have engaged in for decades. “We are here for the long haul,” she says. “We need a new generation to engage, not only as activists and as clinicians, but also as researchers.” She hopes that the upcoming conference will help ignite some enthusiasm and excitement among younger generations of scientists to pursue new and better ways to prevent HIV infection and also to help find a cure for HIV/AIDS. Perhaps most importantly, she hopes the conference will help dispel the misperception that AIDS is over, which she says threatens to undo the hard-won progress she and so many others have fought for. It is hard to imagine anyone could deliver a more impassioned plea for these changes than Bekker.

Below is an edited version of our recent conversation.

How did you first become involved in HIV/AIDS?

It goes back to me being posted to Northern KwaZulu-Natal as a very young doctor. I went off to do my internship and then my first medical officer job just as the AIDS epidemic was really breaking. This was in the late 1980s, and a few things about this experience struck me very hard. The first was that young people were dying, and I seemed to be incapable of helping, despite the fact that I had just finished seven years of medical school. That was the first very humbling experience. The second was that I felt like I needed to know more. So I went back to medical school four years later to specialize, in the hope that I could learn something more and try and stop this. The other thing that I recognized was that I wanted to be a researcher—I had this insatiable curiosity—so I finished my specialization training at the University of Cape Town and then, even before I completely qualified, I managed to get myself into a PhD program because I realized I really wanted to be able to answer the questions, not only ask them.

When I finished my PhD in 2000, which I did partially at the Rockefeller University in New York City, I came back to Cape Town ready to start a career. By then I also had met and fallen in love with Robin Wood, who was running a research organization here. I started to set up my own research, and then Robin and I realized we were aligned in more ways than one, so we decided to join the two research organizations together. That’s when the Desmond Tutu HIV Foundation was born. Since then we’ve been very blessed and lucky to go from strength to strength.

What is the focus of your work at the foundation?

Well, we have a prevention center, a youth center, and a treatment center. We also have a couple of clinical trial sites and a mobile unit, so we have footprints in a number of different communities and are working on a variety of different projects. One of my other quirks, which may or may not be a strength, is that I have an inability to focus on one thing.

That’s called multitasking, right?

Well that’s the nice way of putting it! But it does mean we literally do work in TB, HIV, HPV [human papilloma virus], and are working with men who have sex with men, young women and girls, pregnant women, and straight men. We go wherever there is a question that seems to need a solution. That’s how we like to operate.

It must have been an amazing experience to return to South Africa in 2000 and to witness the turning point in the government’s response to HIV/AIDS that took place after that.

Absolutely. I think it was a huge privilege and wonderful opportunity to be here at that time, but obviously hard as well. It was just an amazing thing to see things shift from a point where everybody was dying to a place where everybody is actually surviving, and living healthfully into adulthood and beyond. That has been extraordinary.

The fantastic thing at that time was that you were a clinician, a scientist, and an activist all at the same time. Robin and I both were working for the Treatment Action Campaign in their early efforts to bring ARVs to the fore. We were also very involved in the initial mother-to-child prevention programs. We were able to really be out-and-out activists as well, which I think in many ways shaped our passion for the future. I recall often thinking we were fighting forces way beyond the virus, which seemed such a shame because it kind of forced us to waste energy on things that shouldn’t have been taking our energy. But at the same time, we were driven by this incredible sense that you had to do something. It didn’t matter even if a politician was in the way; you had to work around it. You had to move beyond the obstruction.

I think that is a great lesson. You have to have passion, and then you can usually work around difficulties to get to where you need to go. That has been our mantra from the get-go. Very rarely do I talk myself out of something that I want to do on the basis that it’s too hard or there just seem to be too many obstructions.

Despite the sense of optimism around treatment and that more and more people are able to access it, there is still an alarmingly high number of people who are becoming HIV infected every year, particularly in sub-Saharan Africa. What more can be done to really reverse that trend?

I think prevention has been more challenging in many ways. I don’t think we’ve completely figured out what is necessary. But we are definitely getting some very clear indications of what the key ingredients are, and it is obviously not to hand out condoms or hand out PrEP [pre-exposure prophylaxis]. For most young people, it’s about providing them with hope for the future, making sure that they actually do have a way to accomplish their goals, and then opening a discussion about how they can keep themselves free of infection.

I think one thing that we need to continue to shine a very strong light on is the fact that we will not treat our way out of this epidemic. Treatment will definitely reduce morbidity and mortality, and there’s no doubt we have to do it to the best of our ability, but we also have to promote prevention. 

I also think we need targets for prevention, and we have to be very explicit about what those are. Those targets should be regionally focused and take into consideration key populations. 

Then, we need to look at getting more resources for prevention. Obviously, countries have to put money into treatment first of all. You must treat those who are already infected. But if you don’t prevent new infections, your pool of people who need treatment is going to get bigger and bigger and, ultimately, you’re going to lose the war. It’s very important that we also find ways to either bring in new money or help countries, either through donor funding or whatever, to be able to actually have a prevention budget. I think that is really key. 

I also think we need a very tailored and strategic approach to prevention so we can use resources wisely. We need to get quite granular in how we approach prevention as a one-approach-fits-all is certainly not the best strategy. 

It also behooves us to keep working on other prevention options, including a vaccine.

How are things going with the use of oral PrEP in South Africa?

A little bit slow. On the other hand, one could argue, it is going safely and wisely because obviously it is a new intervention. I think there is great interest in PrEP, but I do think we have to face the fact that for some people, a daily intervention is very hard. Some people take it on easily, while others really struggle. Clearly, having other options down the pike is going to be very good for those individuals. 

What has the experience of serving as President of IAS been like?

It has been a wonderful, wonderful opportunity. There is something very special about HIV stakeholders, whether they’re doctors, researchers, community workers, or activists. They exude passion. It doesn’t matter who you speak to or where you are—they are there because they believe in it. To be constantly engaged with this community has been such an amazing adventure and really a privilege.

In this role, I have also learned a lot. We are a community that speaks its mind and there are often many personalities and opinions, but I think that’s our strength as well. It moves the field forward in ways that would take 100 years in other areas. Being in a position where I’ve been able to watch all this from sort of a birds-eye view, but also get very involved, and to a certain extent to influence the field, has been just amazing.

The AIDS 2018 meeting will open in a few weeks in Amsterdam. What themes do you expect to emerge there?

We set out wanting to really shine a spotlight on the Eastern Europe/Central Asia region and the worsening situation there. I think this is a region that urgently needs the world’s focus and attention, as it is lacking resources and political leadership all while the region is seeing an alarming increase in infections. That’s the first point.

Then, I think everybody has been a little bit concerned about the notion—particularly in Europe—that AIDS is done. That has implications on two fronts. One is that we then take our foot off the gas pedal. Secondly, it puts funding, much of which comes from Europe and North America, in jeopardy. We absolutely must subvert the misperception that the AIDS problem is solved. I would go so far as to say that given recent anxieties about funding, this misperception has put the HIV response in more jeopardy than it ever has been before. Not only should we not be complacent, I think we have reason to be quite concerned and anxious. We need to redouble our efforts in terms of passion and enthusiasm. Yes, we have come an amazing distance—we’ve got half the world’s population who need treatment on treatment—but we have to keep that half on treatment, and we have to find the other half. Then we also have to make headway in prevention. 

We need to change the narrative and figure out how to sustain the response going forward. We also need to integrate HIV/AIDS into the broader healthcare agenda. I think that is an important conversation to start. I don’t think we can resolve it in four days in Amsterdam, but it is the beginning of a conversation that must happen.

And as if you didn’t have enough to do, you joined IAVI’s Board of Directors this past January. How you would characterize the importance of HIV vaccine research and the energy and optimism about some of the current research approaches?

Truly getting on top of this epidemic is going to mean we need a vaccine. I have always been a believer, even through the dark days following the results of the STEP and Phambili studies, but I am feeling a real sense of optimism now. Thirty years into the epidemic, I think we are beginning to make amazing inroads. I am so privileged to be in this country where at least three major trials are underway, including two vaccine efficacy trials (HVTN 702 and HVTN 705), and then also the antibody-mediated prevention, or AMP, study that is testing monoclonal antibodies for HIV prevention. In addition to these candidates, there is also very exquisite and incredibly innovative work going on to strengthen both the passive and the active immunization components.

All of this makes me unbelievably optimistic.