Dr. Wafaa El-Sadr: This would be the epidemic of our generation

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Wafaa El-Sadr, MD, MPH, is one of the world’s leading experts in HIV and tuberculosis care and treatment. An infectious disease specialist, she directs the International Center for AIDS Care and Treatment Programs (ICAP) and the Center for Infectious Disease Epidemiologic Research at the Columbia University Mailman School of Public Health, and is former chief of the Division of Infectious Diseases at Harlem Hospital Center. Dr. El-Sadr has led early trials studying antimicrobial gels that aim to inhibit HIV transmission, and is known internationally for her leadership in preventing mother-to-child transmission of HIV. She is a 2008 MacArthur Foundation fellow and has held several leadership posts at the Infectious Diseases Society of America and the HIV Medicine Association.

Dr. Wafaa El-Sadr (left) in Kenya in 2003.

Thirty years ago this past Sunday, the Centers for Disease Control and Prevention (CDC) reported the first cases of what would become HIV in its publication Morbidity and Mortality Weekly Report.  Science Speaks interviewed Dr. El-Sadr as part of its special series commemorating 30 years of AIDS, and she discusses the parallels in treating populations in the U.S. and in Africa, the greatest achievements in the epidemic’s 30 years, and what drew her to the cause. 

What were you doing in 1981?
I was at Case Western in Cleveland doing a research fellowship in geographic medicine and I remember the day distinctly. I was working in the lab and my mentor then, Dr. Bruce Greene, came into the lab I was working in, and very quietly placed the MMWR issue on my desk. At that time he knew I was going back to New York. And he said, “Maybe you should read this – I think this might be important, something you have to tackle.” And it was the first report of those five cases of Pneumocystis pneumonia in Los Angeles. That’s when HIV came into my consciousness.

I went back to New York June of ‘82 and started working as an infectious disease physician  at the VA Medical Center at New York University. This was just the beginning of the onslaught of gay men coming to the hospital, often deathly ill with complications of HIV. In retrospect it was kind of remarkable; it was absolutely terrifying and so troubling to have these very young, recently healthy individuals coming in with relentless, severe complications, one after the other. We just had no idea why this was happening, and we were just discovering how to cope, learning as we went along, what this was all about and what it meant. In many ways it was a very frightening time, but also invigorating because you felt you were in the eye of the storm.

Do you remember treating your first HIV/AIDS cases?
Very vividly, I remember a very young man who came in who was very ill who had severe Pneumocystis. In those days you had to go to the airport to pick up the specific treatment that would arrive from the Centers for Disease Control and Prevention (CDC) in Atlanta. I remember treating him for his pneumonia, fortunately did respond and eventually was able to go home. A few months later he came back to the hospital very, very ill this time, his blood cultures grew, at that time MAC (microbacterium avium complex – a serious illness caused by common bacteria). This was unheard of.  I was looking through a microscope at a biopsy of a lymph node packed with an organism that had never been seen in a lymph node before.

You didn’t know what to do, or what to expect. It felt like you were on a treadmill, always playing catch-up.  There was a great fear of what was going to come next.

It was incredibly exciting in a way, too, yet so troubling. I don’t remember being personally frightened at all. It’s almost like you had to do what you had to do and to be there at the frontline, to do what needed to be done, It was discovery after discovery, on a very personal level.

When did you start at the Harlem Hospital?
I went to Harlem in 1988, and that was at the beginning of the bridging of the epidemic from gay men to other populations. The HIV epidemic was now beginning to affect injection drug users (IDUs) and women and soon enough children. So it was kind of a transformation that was happening right in front of our eyes.

At the beginning we naively thought that maybe it was caused by an environmental exposure – we didn’t know it was a virus. So early on we did epidemiologic research where we asked extensive questions about exposures for example to amyl nitrate (a drug used to get high). We asked multiple questions about sexual behaviors, hoping to figure out the cause of this terrible illness we were witnessing.  And we thought that we would be able to pinpoint exactly what it was and do away with it. And everything would go back to the way it was before the onslaught.  By the time I got to Harlem, we knew that AIDS was caused by a virus, HIV.   It had also sunk in that this would be the epidemic of our generation and that it was not going to go away anytime soon. So we had to get ready for the long haul.  

How did you decide to dedicate your life to HIV?
It sort of happened slowly, because taking care of people with HIV is such a unique experience. You become engrossed in their lives, their suffering, their relationships they have with other people, their challenges, their triumphs.  This opened my eyes to humanity like never before. I realized that taking care of persons and families with HIV was so much more profound than anything that I had ever encountered in medicine – incredibly engrossing but also enormously satisfying.

What were some of the challenges in getting access to treatment and care for HIV-infected persons in Harlem early on in the epidemic?
When I first started there, at that time some people still thought that this was a disease that only happened to gay men – lots of common misconceptions about the disease itself and who is vulnerable. That was a big challenge in the community. There was a huge amount of stigma in the community at that time in relation to HIV, not dissimilar from that encountered by the population I came across at the VA. Yet, the impact of the illness in the even more disenfranchised populations in Harlem was even more harrowing.

Many of the gay men that I took care of at the VA had strong support systems, mostly from within their own community. But the patients I saw in Harlem were often just alone, struggling to confront this catastrophic illness with a very fragile support system. They were often very poor, they were unemployed, didn’t have insurance, disconnected from the halls of power, simply on their own.  While the courageous gay men that were affected by the epidemic in the early years rallied to support each other and to demand action to confront this epidemic, for the patients in Harlem, it was a very different situation early on. As providers we had to play the role of advocate as well as care provider. We had to stand behind them and with them and work ferociously to get them what they couldn’t get on their own. It was the awareness of the many profound needs of our patients and their families that drove me to strive to shape programs at Harlem that were responsive to their unique needs, whether it be social support, substance use treatment, outreach into the community beyond the health facility. It was a very different kind of a challenge but it very much shaped the programs we established and consolidated the principles that have guided me in my work thereafter.  

Did you see the same challenges in other parts of the world?
People say to me in Africa, “Oh things must be very different in New York.” But in many ways I think there are so many more similarities than differences between the experiences of people in Harlem and those in sub-Saharan Africa, except of course for the resources available.  The way people try to cope with HIV as individuals, families or communities is universal. A woman in Harlem will often ask the same questions that a woman in Africa asks, and the challenges and needs are so very similar.

I feel, honestly, in a lot of ways the lessons I’ve learned in Harlem have been vital to shaping the programs we have been privileged to support in Africa. And the work in Africa has helped us rethink the way we do things in the U.S.  In Harlem early on we developed the family-focused approach – recognizing that whether one is talking about HIV and TB, both are family diseases. Whether infected or affected, these two conditions will affect the whole family. So the programs we needed to build had to be shaped to respond to the family needs and not just to the individual patient’s needs.  We created a family environment in the TB clinic—calling it the surrogate family model—where the staff established a welcoming environment that enabled patients to complete their TB treatment. In terms of the HIV program we developed a mom/baby clinic – because we recognized that often mothers would bring their babies and children to the pediatric HIV clinic, but forget about their own health care. So we decided, let’s see them together in the same clinic on the same day.

Using the same principles, our initial work through ICAP in Africa, the Mother-to-Child-Transmission (MTCT) Plus Initiative was built on the same principle-family-focused approach.  For me and for our group, this approach really emanated from our experience at Harlem.

What have been some of the key moments in the AIDS pandemic?
First, the discovery that it was a virus was unbelievable and incredibly important. It opened up the potential for a vaccine and potentially an effective antiviral drug.  

The next step was obviously the discovery of effective treatment. That changed HIV care forever.  The emptying of the hospital of the tens of very ill patients with AIDS was just amazing. We used to have 30, 40 or 50 HIV patients at the hospital at any one time, desperately ill people. It was remarkable how quickly, the numbers dwindled. Now we could keep our patients healthy, largely avoiding the need for prolonged and repeated hospitalizations.

In terms of key moments for me in the global arena, it was when we first started the MTCT-Plus Initiative, which we began conceptualizing in 2000 and got off the ground in 2002. At that point in time, most people had simply given up on even trying to bring treatment to HIV infected patients in poor countries—the millions already HIV infected would simply be a lost generation. When we started working on supporting comprehensive HIV treatment programs through MTCT-Plus, we were told that this was a misguided effort and that all efforts should focus on prevention.  MTCT Plus demonstrated that it was feasible to provide high-quality treatment and care to these people, disproving the naysayers. It was a very, very important milestone. It was also so important to have a program that married prevention, that is PMTCT, with treatment.

What do you think the biggest challenges are at this point with AIDS and the developing world?
Keeping the momentum, not slowing down, building on success to garner more success.  Another challenge is to continue the momentum while at the same time to confront other health threats by learning from HIV and building on the platform it has established. Let us not recreate the wheel.

What do you make of the results of HPTN 052, which showed that antiretroviral treatment HIV-infected heterosexuals not only maintains their health but prevents HIV transmission to their negative partners? Do they show us a way forward?
Remarkable, isn’t it? We’ve long suspected that this might be the case, that there would be this “collateral benefit,” as I call it, from treatment scale up.  The findings should inspire the world to keep the momentum in terms of scale up of HIV programs. If you think back to our MTCT-Plus work, the idea was to marry prevention of transmission of HIV from mother to baby with treatment for the mother to preserve her health and wellbeing.   The findings from HPTN 052 offer a similar opportunity to marry treatment and prevention. I’ve personally thought for a long time that this dichotomy between prevention and treatment was a false dichotomy.  There is no divide and there should be no divide between treatment and prevention. It’s short sighted and counterproductive, it won’t get us what we all seek—which is to stem this epidemic.   We have to embrace every new victory and build the bridges and coalitions to reach this goal.

Moving forward in the global scale up of HIV programming, we must continue to learn new lessons. One of the exciting things that I have been privileged to witness through our work in Africa is the innovation on the ground.  People in the countries themselves, whether they be providers, patients or communities, are innovating in exciting ways. This is a source of great optimism for the future.

What about the way forward in terms of HIV/tuberculosis (TB) co-infection?
It sort of goes back to our experience in Harlem where HIV and TB were so closely linked during the 1990 TB outbreak in the U.S.  HIV and TB are infinitely connected and need to be approached largely in the most severely affected countries almost as a unit.

The promise of the scale up of HIV treatment is that this will lead to a decrease of TB cases in the most severely affected countries. From the perspective of patients with both TB and HIV, integration of the services they receive for both conditions is fundamental. The challenge ahead is to think creatively about how to bring closer programs and services for the benefit of the patients themselves. In a way, the efforts to date in the integration of TB and HIV provide important lessons that can transform health systems in a manner that serves the benefits of the ultimate beneficiaries—the patients themselves.

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