Faculty Q&A: Epidemiologist Wafaa El-Sadr Has Changed the Way the World Treats HIV
As a recent medical school graduate of Cairo University, Wafaa El-Sadr arrived in the U.S. in 1976 confident that more training in medicine would help her meet the challenges of curing infectious diseases in poor countries around the world, like her native Egypt.
“Many of us in the infectious disease field believed we could have almost an immediate impact—we could treat people who were sick with an infection and get them well rapidly,” she said. “HIV changed that notion completely.”
El-Sadr’s training and work here in the U.S. coincided with the beginning of the AIDS epidemic, and she found herself among a host of doctors struggling to treat an incurable and deadly disease. “We were confronting something that we had never, ever in our wildest dreams imagined.”
Working at Harlem Hospital, where she was chief of infectious diseases for two decades, and later based at the Mailman School of Public Health, El-Sadr pioneered programs for poor and immigrant patients with HIV/AIDS and tuberculosis (the diseases frequently strike in tandem).
Her approach proved successful in engaging patients and their families in comprehensive programs. Building on lessons learned in Harlem, she then confronted the HIV epidemic in sub-Saharan Africa and Central Asia under the aegis of ICAP at the Mailman School, the center she founded and heads.
In 2008, El-Sadr was named a MacArthur Fellow, often referred to as the genius award, for her ground-breaking work in responding to the HIV and tuberculosis epidemics in the U.S. and abroad. And in May, President Lee C. Bollinger named her a University Professor, the highest academic rank at Columbia, awarded to recognize exceptional scholarly merit and distinguished service to the University.
With characteristic modesty, El-Sadr said she is honored and thrilled by her new title. “In many ways I feel it’s a recognition and appreciation of a lot of the work not just that I do but that my whole team does in New York and the countries where ICAP works, and not just the current team that I work with now but all the people I’ve worked with for so many years in Harlem and around the world,” she said.
Q. What did you know about HIV when you first encountered it?
We had no inkling that HIV would spread to rapidly affect millions and millions of people around the world, up to this point in time where there are at present an estimated 34 million people living with HIV. Those early years were permeated with dread and frustration as we watched helplessly the relentless suffering and loss of life. At the same time, HIV was intriguing from a scientific perspective—an infection that resulted in a complete collapse of the immune system, making people susceptible to infections and cancers that had been hitherto rarely observed. HIV was also unique in terms of its profound effects on society. It targeted populations that already were facing so many other threats: gay men, drug users and poor people largely from minority communities. Beyond the physical suffering, people with HIV faced enormous personal pain due to the stigma and discrimination that they encountered from their communities, health care professionals and in some cases, members of their own families. There was something about the confluence of these characteristics that compelled me to work in this field.
Q. How did the discovery of antiretroviral treatments in 1996 change how HIV patients were cared for?
Overnight, the discovery of effective treatments for HIV seemed to transform the disease from a death sentence to a chronic, manageable illness like diabetes or high blood pressure. People who had been on the brink of death were almost miraculously revived, able to get up from their sick bed, go back to work and lead productive lives. This transformation radically changed how we thought about HIV and how people viewed those with HIV infection. At Harlem Hospital we worked hard to make sure that everyone with HIV had access to these treatments. We were able to develop a model, unique at that time, which provided for the needs of the whole family, whether they were infected or not. This model also made sure that this population had the opportunity to influence the design of research studies and to participate in them.
Unfortunately, while those in developed countries were garnering enormous benefits from scientific advances in treating HIV, these treatments were not within the reach of the millions living with HIV in poor countries. The prevailing view then was that HIV prevention was the only thing that should be focused on, that people who already had HIV in poor countries were a lost generation. The reservations expressed were that it would be too difficult, too expensive, that there were no health facilities, that people with HIV were not going to take their medicines correctly, and that this would result in the generation of resistant virus strains that would not only threaten those in poor countries but spread far beyond.
Q.Is that when you founded ICAP?
Yes. Making treatment available to the millions who needed such life-saving medicines became the rallying cry behind establishing ICAP in 2003. I recall many times being told that we were misguided, yet we were determined to prove that it could be done and done well. Advocacy groups also played a critical role in saying that ignoring those with HIV in poor countries was untenable and unethical. Working hand-in-hand with many ministries of health and with many committed people on the ground, great progress was made. Today, 7 million persons with HIV living in Africa have access to HIV treatment. ICAP has been able to reach more than 1.5 million HIV-infected individuals and provide treatment to more than 850,000 of them. This global accomplishment will remain a major victory in the history of public health.
Q. Now that treatments are available in poor countries, can you discuss the relationship between treatment and prevention?
What’s been interesting to observe over the years is that A.now that treatments are available, prevention efforts appear to be much more successful. The data from UNAIDS show that there has been substantial progress in many countries. In sub-Saharan Africa, the numbers of new HIV infections are decreasing in several countries. And there are many reasons for this. One is that treatment has brought hope to communities—people have a future to look forward to as they see a revival of their communities based on access to HIV treatment. With the enormous magnitude of death and suffering, nobody wanted to hear the prevention messages. In addition, recent research has shown that treatment also works as prevention. By treating people with HIV, you can decrease the amount of virus that’s in their bloodstream as well as in their genital secretions, and therefore decrease their ability to transmit HIV to somebody else. No more is there a divide between those who advocate for prevention and those who advocate for treatment.
Q. How has your work, whether in research or programs, affected teaching and learning at Columbia?
The work we have has convinced me of the need for A.universities to expand their role beyond the traditional mission of teaching students and creating knowledge. Universities have a critical role to play in translating knowledge into action, exploring the science and art of implementation and scale-up, in order to make an impact at societal level and on the public’s health. I find it incredibly exciting to envision the creation of a new generation of scholars who are motivated by this potential. Columbia is leading the path in this new frontier.
Q. How do you think your experience with HIV has changed you as a medical professional?
I was a naive young doctor at the advent of the HIV epidemic—with a certain sense of confidence and power. HIV really just took that whole notion and threw it up in the air. I quickly realized my limits as an individual, a physician, to provide for the many clinical and psychosocial needs of my patients and their families. I realized the importance of a team in the broadest sense because diagnosing something and giving someone a prescription is just one little piece of what this individual and this family needs. I realized that ultimately it would take diverse disciplines and skills to make a difference. I learned the importance of other team members—the nurse, the social worker, the outreach worker, the importance of research, the value of the affected persons themselves, and that ultimately what happens outside clinic or hospital walls is just as important as what happens in that exam or hospital room in terms of the health and well-being of patients and communities.
Q. You’re saying, then, that HIV had a transformative effect on the entire profession by spurring the development of multidisciplinary teams?
The health profession is traditionally hierarchical. Often physicians are perceived to be at the very top of the hierarchy, with everybody else largely there to follow the directions of the doctor. Globally, thanks to HIV, this framework has been re-examined. In a very concrete way, we as a team needed to sit around the table and discuss each individual patient in terms of their health and more broadly in terms of their overall life. And I think it’s this kind of team approach that offers important lessons to the healthcare system and the public health response.
Q. How does the approach to HIV apply to other illnesses, and more generally, to how medicine is practiced?
HIV will have a huge legacy on how we think of health and disease, how we configure health services and respond to global health threats from a public health perspective. In many poor countries around the world, health care is episodic—you feel unwell, you seek care through a clinic where you are likely to get pills or a shot, and hopefully you feel better. And this scenario repeats itself again and again. HIV was the first chronic condition that forced a transformation of health systems and health service delivery. It also highlighted the importance of providing broad access to prevention and care to all in need whether they lived in urban or rural areas, whether they were rich or poor. Health can only be achieved by focusing on not only healthcare services but also on prevention, community engagement among many other elements. This has huge implications as many of the countries where HIV is having such a profound effect now face other challenges for maternal-child health and will face new threats, such as the looming crisis of non-communicable diseases—diabetes, heart disease, high blood pressure, lung disease, cancers and mental illness.
We trust that many of the countries in the global south will be able to prevent and tackle these other conditions effectively through adaptation of the innovative and successful models that they have established for HIV. Research we have done has shown that if you take some of the methods and tools that were developed to address HIV and adapt them to diabetes, you will see substantial improvements in the quality of care for diabetes patients. This is the smart approach—there is no need to reinvent the wheel again and again.
What lessons does this team approach have for the American health system or the health systems for developed countries?
It is heartening that the U.S. health system has also evolved to use a team approach. The best programs for managing childhood asthma or diabetes, just to give two examples, are multidisciplinary and include a strong education/prevention component, a strong family support component, integrated research efforts and most importantly, continuity of care and engagement of the target population.
Q. Are there other ways in which HIV has transformed the health care system?
HIV has demonstrated the power of the voice of the affected people themselves. People with HIV demanded access, they demanded high quality programs, they demanded responsive research programs. It is impossible for me to imagine that any programs designed in isolation from the people affected would be successful. That is a lasting legacy of the HIV response.
—Interview by Bridget O'Brian
—Video by Columbia News Video Team
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