Wafaa El-Sadr



Wafaa El-SadrDo not take no for an answerThank you, Dr. Brown, for the invitation to speak today. Thank you all for the warm welcome. Since I was asked to speak to you, I have been thinking about similar experiences that I have had, occasions when I was in the audience, in your shoes. My thoughts return to a day many years ago at Cairo University in Egypt, sitting in a stiflingly hot auditorium, waiting to receive my medical school diploma. I don’t remember if there were any speeches. I don’t remember who was sitting next to me. I do remember one thing – I could not wait for that ceremony to end! I was sitting on the edge of my seat, a sprinter poised for the start of the race. Little did I know that memories of those wonderful student times would stay with me for years and years. Little did I know how those formative years in Egypt would shape my approach to the challenges to come. And little did I know that this would not be a sprint, but a marathon. It is a convention, almost a cliché, to tell graduating students to follow their dreams. And so it is quite easy to dismiss this as verbiage, dusted off for the occasion, not to be taken seriously. But the essence, the core, of the message holds. Do you have dreams, ideas, already? Will you have those dreams later? And when you do, will you listen to them, embrace them? Will you have the fortitude to pursue them? Because fortitude you will need. Great ideas often seem impossible. Smart colleagues will provide a thousand apparently cogent reasons why your ideas are infeasible, maybe even reckless. Rather than encountering a world that encourages you to dream big, you may find yourself mired in a “culture of no” – one where fear of failure means that great ideas don’t even get a try. You will have to decide, sometimes on a daily basis, whether to listen to the naysayers, from whom you may learn much, and when instead to believe in your own vision, and have the fortitude to push forward. I will tell you a little about my own story and how I have used my background to guide me as I pursued my own path. Looking back, I can definitively say that the HIV/AIDS epidemic has defined my professional life. The numbers are simply numbing. Currently about 33 million people live with HIV/AIDS in the world, two thirds of them in Africa, a million here in the US, a hidden and forgotten epidemic. To put this in perspective, the number in the US is about twice the population of the City of Boston. Just this past year, there were 2 million deaths globally due to HIV. About 15 million children have lost of one or both of their parents to HIV/AIDS. Just this past year, almost 3 million persons got newly infected, including almost half a million children. Every single day there are more than 7000 persons around the world who get HIV infected. Every single day. These numbers are overwhelming. What can one possibly do?In the early years of this past decade, I remember walking down the hall in a rambling public hospital in South Africa. Bed after bed was occupied by desperately ill young people with sunken faces, ashen skin and glistening eyes that stared silently at me, a visitor. Between the beds, others lay on mattresses on the floor, in very similar shape – women, men and children. On that visit, the deathly silence of the wards affected me strongly. How could this silence be in Africa, a continent that to me always buzzed with the cadence of melodious languages and vibrant music. All I could think of then was that this did not have to be so. It did not have to be so.We in wealthy countries, by the mid 1990s, already knew how to prevent transmission of HIV from a pregnant woman to her baby. We knew how to treat people with HIV/AIDS. We had the “cocktails” of effective medicines that could save lives. Unfortunately these medicines were not available to millions and millions who desperately needed them. I became determined that something must be done to remedy this situation. But it was not easy. Again and again, we heard the word No. No, the medicines were too expensive and had too many side effects. No, poor people in Africa would never take the medicines on a regular basis, and so resistant strains of the virus would arise and course across the world. No, it would not be possible to implement because health care workers are scarce. No, even available health care workers could not possibly learn how to care for a complicated condition like HIV. No, there were no laboratories, no roads, and only weak health systems. No, there was rampant corruption. No, I was told, no one would show up due to high levels of stigma in these societies. The word “misguided” was often used to describe the plans that I and my colleagues began to propose and work on. Yet, it was simply wrong to deprive people of something that could prevent or alleviate their suffering. Over the past few years, with support from colleagues and in partnership with many people around the world, we have brought life-saving treatment to close to a million individuals in 13 countries in sub-Saharan Africa. The global effort dramatically increased access to life-saving HIV treatments in Africa. In 2002, only 100,000 people in Africa had this access. By the end of last year, that number rose to 3 million. How was this accomplished in such a short period of time? The momentum came from a sense of urgency and passion. I think back to a visit to a rural clinic. A proud and eager nurse feverishly showed me copies of training certificates that she had accumulated. This, she asserted, was evidence of her readiness to treat HIV. She had written down pages and pages of names of people from her community that she knew needed treatment urgently. She kept saying, again and again: “We are ready, we are ready.” People like this nurse were not waiting for fancy buildings or beautiful furniture, they understood deeply that this was an emergency. HIV was killing their families, their friends, and their communities. They passionately wanted to do something about it.It was the people on the ground, whether leaders in a ministry of health or a lone health worker in a one-room health post, who were most eager for success. Today, if you drive down a bumpy road in a remote rural district in Mozambique or Rwanda, you might come across a crowd of people outside a health center. Some are sitting on benches with babies strapped around their bellies, others are scattered in the yard sitting on the grass waiting their turn to be seen. Inside there is a welcome din, with more people standing and sitting, some crowding around nurses as they weigh babies, others speaking quietly with counselors regarding their newly prescribed medicines. At the other end of the clinic, there are clerks pulling patient charts from neatly organized shelves. Bustling between all are peer workers, themselves HIV-infected, but working to help others like themselves. You may want to stop a peer worker to ask them about their story and their work. That story often begins in a hospital bed, a situation not dissimilar from the one I described earlier. You may hear a tale of abandonment by family, then a precious chance offered for treatment, followed by recovery, and an opportunity provided to become a peer educator. You are likely to witness deep knowledge, great pride, leadership, wisdom, and a commitment to serve others. That peer worker may share with you how she takes a newly HIV-diagnosed pregnant woman by the hand, providing her with comfort, information and hope, how she escorts such a woman to where she can get care for herself and protection for her baby. You might even find yourself trekking up a narrow dirt path in the hills with a peer worker as he makes a home visit to check on someone who missed a clinic visit. In the voices and the stories of the peer workers, you will hear the sound of triumph over adversity, of determination, and of commitment. For all the ‘no’s’ we heard in the past, all you have to do is meet one of these individuals to realize what is possible. It is in these settings that people I meet in Africa say, Ahh, things must be so different in New York. I smile and tell them that there are more similarities than differences. In fact, in the early years of the epidemic in Harlem, I distinctly remember hearing again and again the word “no”. No, poor people were not worthy of services. No, gay men deserved to get HIV infection and do not deserve services or resources. No, drug users are irresponsible and will sell their medicines on the streets. No, poor women with HIV should not keep their babies. No, one would never be able to conduct research in these settings. But, despite the naysayers, we carefully listened to our patients as they shared with us their struggles and needs. Step by step we put together the mosaic of services that shaped our comprehensive HIV program at Harlem Hospital, one that included the same principles that guided our work in Africa. It was in Harlem that the power of persons with HIV became evident to me. I clearly remember the day a young woman that I was taking care of shocked me. She told me that HIV was the best thing that ever happened to her. She could see both shock and surprise on my face. How could that possibly be, I wondered. She went on to tell me how HIV brought purpose to her life, helped her overcome years of addiction and despair, gave her the strength to find her long-lost children, to re-create her family again. HIV motivated her to get her GED and go to college. It was that moment that spurred me to establish the first peer program in Harlem, years before the efforts to support peer programs in Africa.Our work is far from done. There is a misconception that the emergency is over, the epidemic vanquished. In addition, the impetus to move on to other issues threatens to destroy the achievements to date and to doom millions to a terrible fate. We can’t rest on our laurels; the struggle must continue; the work must go on. We cannot take no for an answer.It has been years since those early days in Egypt where I started my story. Looking back, maybe it was the indelible mark of growing up in a poor country that motivated my journeys in Harlem and Africa. Maybe, it was witnessing the multitude of misfortunes that befell people, the fragility of life, the many diseases that prevailed that we so rarely see today, friends with polio, cousins with tuberculosis, my friend next door who developed meningitis and died. People who had so little but somehow overcame adversity every day, despite all odds. You each have your own unique experiences that you will build on. Look back and seek your motivations and your sources of strength. Then stride ahead. And be ready to move mountains. Along the way, be humble, be kind, be generous. That will be a lasting legacy. Listen carefully before you act, reflect, do not judge unjustly. Be patient, let others find the answers. Inform and guide, but step back and let others lead. Remember, whether your path takes you to Harlem or Harare, Zimbabwe, or even if you stay right here in Boston, never succumb to the “culture of no”. Believe in your own wisdom and have the personal strength to push forward with your own ideas. You will make a difference! Congratulations ................
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