'We are at a watershed moment in the response to HIV': interview with Dr Wafaa El-Sadr
At NCHIV2019, Dr El-Sadr will give a plenary talk entitled ‘Bringing precision to the global HIV response’. Here, Dr El-Sadr discusses her work in the US and sub-Saharan Africa and her passion for working with the community of people living with HIV.
How did you first become interested in HIV?
I became interested in HIV at the very beginning of the epidemic more than 30 years ago. I was doing a fellowship in infectious disease when the first five cases of AIDS were reported in the United States. At that time, nobody knew what caused it and many of us working in infectious disease felt compelled to become engaged in the response to this mysterious illness. In those early years, we were so involved in our patients’ daily crises, that we barely stopped to consider the future implications of HIV. In retrospect, we could not have imagined the speed with which HIV would spread around the world and the eventual magnitude of the epidemic.
After my training, I continued my work in New York City, at the height of the explosion of new cases of AIDS, particularly among gay men. The suffering and losses that this community faced were relentless and devastating. It was also very difficult for many of us involved in caring for patients with HIV, as we had nothing to offer them except support, care, and symptomatic treatment.
In the late 1980s I took the position of chief of the division of infectious diseases at Harlem Hospital in New York, an institution situated in a community with a large number of disenfranchised people. HIV was just one more trauma to this community. This was also where we started to see the first women affected by HIV, followed by the onslaught of babies born with HIV. This was a community with many historic reasons to mistrust the health system and so one of the challenges we faced was how to overcome this. Therefore, we knew that we had to engage the community to succeed in shaping an HIV programme that responded to the many needs of our patients and their families,.
What was special about this programme?
It was the very beginning of what we have since called a ‘family-focused’ approach, aiming to meet not just the individual patient’s clinical needs, but also their psychosocial and other needs, as well as those of their family and loved ones. It was quite evident that HIV was often just one of the challenges our patients faced and so we tried to put together the mix of services and resources they needed. For example, we started the family clinic, where women were seen with their children and where a multidisciplinary team provided comprehensive services to the whole family, as women had previously often neglected their own care and prioritized the care of their children. We also worked hard to reach beyond the walls of the clinic, providing the support where it was needed, engaging the community and utilizing its resources.
As the epidemic evolved, we felt the need to bring research to our patients since, at that time, access to research studies meant access to new promising drugs. Many thought this couldn’t be done, due to perception that individuals from communities like the one we served would not engage in research or that research could not be done in such settings. But I’m glad to say that we proved the naysayers wrong and we successfully established one of the first community-based HIV research sites in the US.
When did your work move beyond New York?
Having been born and raised in Egypt, I have always been interested in public health and global health. In the early 2000s, I became very disturbed by a glaring inequity. We had the tools in our hands, we had life-saving treatment, we had a model of care that worked, yet at the same time millions of people living with HIV in sub-Saharan Africa were dying without access to any care or treatment. It was ethically untenable to have this world of ‘haves’ and ‘have-nots’.
As in Harlem, I repeatedly heard that it would not work, that it wasn’t possible to bring treatment to people living with HIV in Africa: there was too much stigma and poverty, healthcare workers wouldn’t know how to treat HIV, medicines would be sold on the streets, people living with HIV wouldn’t be able to take their medicines as recommended and rampant resistance would develop. Again, these doubts made us more determined than ever to prove these naysayers wrong and drove us to act.
By adapting what we had learned in Harlem, such as working with the community, supporting multidisciplinary teams of providers and applying a family focused approach, we were able to quickly build the first large-scale multi-country HIV treatment programme in sub-Saharan Africa. This programme, the MTCT-Plus Initiative, was the first proof of concept that showed that treatment at scale was feasible and can be successful in Africa. It was then that I founded ICAP at Columbia University, a large global health centre at the Columbia School of Public Health that currently supports HIV and other global health work in more than 30 countries around the world.
What lessons have you taken from sub-Saharan Africa back to the US setting?
We’ve taken some of the innovations from our work in sub-Saharan Africa and brought them back to our continued work here in the US. For example, an important lesson is the value of peer educators in supporting patients and in extending the work of traditional health workers in the delivery of services at a community level. This ‘power of peers’ is something that I have very much advocated as one element that needs to be embraced in the HIV response in the US.
I also feel that the work around the world, and particularly in Africa, has highlighted an important principle, namely that it’s critical to rapidly move innovations to implementation and scale-up. Examples include how quickly rapid HIV testing was adopted globally and the rapid incorporation of HIV self-testing into programmes.
Another critical lesson learnt from the global response is the dynamic use of data to shape the response. It is really exciting to note how close monitoring of programmes, careful evaluation of what’s working and not working, and the readiness to rapidly make adjustment in the response can yield enormous benefits. These are just a few of the many lessons we have learnt.
What are the main barriers that still need to be overcome?
We are at a watershed moment in the response to HIV. Collectively we have accomplished so much, but more remains to be done. One of the great barriers globally is HIV-related stigma and discrimination. We cannot underestimate how this limits the potential to gain control of the epidemic. It influences how people perceive their risk, whether they get tested, whether they reach out for prevention or treatment, whether they decide to disclose to others and many other critical actions. So, we must work on how to address stigma, and how to reach stigmatised populations and engage them in a respectful manner through organisations and people they trust.
Other challenges include the need for health systems to evolve to provide more tailored services to people. For example, we must provide the services and support that a woman living with HIV needs to enable her to take care of herself and her family, the harm reduction services that a person who uses drugs needs, or the peer support that a sex worker needs to protect herself from HIV and from abusive relationships. Such ‘wrap-around services’ are fundamental to reaping the benefits of all our research discoveries.
Are you optimistic about the future?
Yes, absolutely. We’re fortunate that HIV has generated strong advocacy and commitment, whether it be among researchers, organisations, or communities. It’s a very compelling cause, so I’m optimistic that these alliances of groups and individuals will endure and continue the fight. And this is important now more than ever. There are people who erroneously believe that HIV is a thing of the past. We have to keep reminding people, whether they be political leaders or researchers or funders, that HIV is still spreading to millions of people and still kills close to a million people every year. We have to continue to pursue new discoveries and innovations, while at the same time seeking to take them to the people that need them. We are not done with this epidemic.
You are clearly passionate about your work. What is it that gives you the most satisfaction and has driven you to continue working in this field for decades?
Firstly, I believe that it is a privilege to be able to be engaged in confronting this epidemic. Seeing the progress achieved over the years gives me hope for the future. Seeing how people around the world have come together to respond to HIV is so encouraging. Seeing the courage and determination with which people affected by HIV have dealt with HIV is inspiring.
Secondly, I feel honoured to be part of a community of people involved in the HIV response. It’s a global family of people who are passionate about the cause; there’s something that binds us all together.
Third, HIV is evolving. There’s always a new challenge, a new discovery, something new that needs to be incorporated into one’s work, there’s always another research question that needs an answer. Being part of this dynamic effort is stimulating and exciting.
Lastly, I enjoy working with people from different backgrounds and who bring different perspectives. I try to listen carefully and to learn from others. That’s what I enjoy doing, day in, day out.