Miracles We Have Seen

by Harley Rotbart

  Most of the villagers were indigenous peoples; the men spoke Spanish, albeit haltingly, but most of the women spoke only their native Mayan languages. It was a tremendous logistical hurdle to capture the information we sought. We had to design our survey questions well to be sure we posed the kinds of questions that would give us the answers we needed to design the best health educational approach to accompany the mass treatment program.

  As the sun was setting one evening, casting an angular orange glow on the small plantation where we were conducting the survey, I sat with the interviewer working with me in a hut with a thatched roof, interviewing a family. I was trying to be inconspicuous, sitting in a corner on an old chair, letting the interviewer do all the work. A mangy dog lay by my side. Kids were running around with almost no clothing, malnourished, with obvious deep skin sores from scabies (another parasitic disease), dodging the chickens that roamed freely around the room nipping at insects on the dirt floor of the hut. This was my seventh or eighth interview on this project, and I was growing accustomed to hearing, in response to our “major health problems” question, diarrhea, worms, pneumonia, and other typical scourges of the developing world. Only a couple of the prior interviewees included river blindness on their priority lists, which made us realize education about the disease would be critical for gaining acceptance of our treatment program.

  Sitting in another corner of this tiny hut was an old man. He was tanned, had a white stubble beard, and was dressed in rags like the others. Yet he had subtle nobility about him; he seemed to observe the event distantly. He hadn’t said a word as my interviewer questioned others in the family, but I noticed him staring at me from time to time throughout our visit. Whenever I looked back at him, we briefly met eyes. Glaring is not the right word, since I did not think he was hostile toward me, more curious. Finally, after the others had spoken, I returned his gaze and asked in a soft respectful voice, in Spanish, “Señor, what do you believe is the major health problem here?”

  He met my gaze and his reply came after a short pause, “Fijese esta pobreza que no se escapa.” Translation: “Fix yourself on this poverty that cannot be escaped.” Then his face softened and, nodding, he almost seemed to smile at me, as if to say “Here endeth the lesson. Education complete, my son.”

  It struck me as a lightning bolt, straight between the eyes. Of course I knew that. Lessons are miraculous when you know them already, when it only takes someone to articulate for you what you know. I was so fixated on this one disease, this one effort, that I was lost. Now I was enlightened, and ashamed and humbled by the obviousness of his statement; how could I be so blind to it? My teacher knew I had asked a shallow, stupid question; it was his concise and profound answer that mattered. Speechless, I averted my gaze, nodded and bowed my head. When the interview was over I shook his hand, met his eyes, thanked him, and left, never to see him again.

  His face and his answer still haunt me today, and I can call upon the memory of that experience at will, reliving the full emotions, visions, sensations of that very moment.

  We international health experts, well-intentioned and highly motivated, wade deep in our weeds of infectious diseases theory and infection control strategy, studying patterns and trend lines of illnesses and deaths in isolated villages. Yet this wizened man had found a perch above it all from which he could see the big picture and teach us doctors a lesson.

  As I have often reflected on this wonderful event, the lines of an Eagles song always come to mind:

  “An old man told me

  Tryin’ to scold me . . .”

  I guess he was softly scolding me, as a good teacher might, to get that tension to pass that message to the obtuse student. Of course river blindness was a major health concern in Guatemala and on this coffee plantation—as were diarrhea, pneumonia, typhoid, malaria, and hepatitis. But the major health problem, above all else, was inescapable poverty. Imagine: poverty so great and powerful, so all-encompassing and ever-present, the root cause of all infection and perhaps all illness. A downward spiral generated a spiritual hopelessness; utter despair for a future that can be no more than that hut, and all that it encompassed. Cure my poverty, and you will cure me.

  As I write this essay, I am also completing my report for a medical journal on the successful elimination of river blindness from Guatemala. One hundred years after a Guatemalan was the first to discover river blindness, that nation has requested verification of elimination of the disease from the World Health Organization. The juxtaposition of these two writing projects, the eradication report and this essay on “the real major medical problem,” is powerful. On the one hand, I’m excited to have reached this stage of our river blindness mission, to have achieved the goal we set out to achieve nearly three decades years ago. On the other hand, when seen from the perch of that old man so many years ago, our accomplishments are only a small piece of the dilemma. That old man, if he is living, doesn’t have river blindness to worry about any more. But so what? The job is yet undone; so much more to do. Sweet—yet bitter—success. As a father he warned me of the height of the mountain that I was daring to climb. Keep heart and keep sanity.

  “Whoa, son, don’t wade too deep in Bitter Creek.”

  How miraculous his single sentence was for me, and how much it taught me! I am a different person and different physician because of my visit to the old man’s hut in 1988.

  I encourage my public health students to expose themselves to similar uncomfortable situations, to be attentive and learn from the most humble of those we have the opportunity to meet and interact with in our profession. What we will find will be unexpected insight and wisdom. What they tell us will miraculously reenergize our commitments and renew our strengths. It will plant a seed that will sprout as motivation for the next difficult step in our mission to help leave a better world.

  Step back from the statistics and data to find a perch, and try to see the big picture. That old man did just that by scolding me and warning me, all at the same time.

  The results of our 1991 survey where I met the old sage can be found at:

  F. Richards, R. Klein, C. Gonzales Peralta, R. Zea Flores, G. Zea Flores, and J. Castro Ramírez. Knowledge, attitudes, and perceptions (KAP) of onchocerciasis: A survey among residents in an endemic area in Guatemala targeted for mass chemotherapy with ivermectin. Social Science and Medicine 1991; 32: 1275–1281.

  The results of our declaration of river blindness elimination in the Central Endemic Zone:

  Frank Richards Jr, Nidia Rizzo, Carlos Enrique Diaz Espinoza, Zoraida Morales Monroy, Carol Guillermina Crovella Valdez, Renata Mendizabal de Cabrera, Oscar de Leon, Guillermo Zea-Flores, Mauricio Sauerbrey, Alba Lucia Morales, Dalila Rios, Thomas R. Unnasch, Hassan K. Hassan, Robert Klein, Mark Eberhard, Ed Cupp, and Alfredo Domínguez. One hundred years after its discovery in Guatemala by Rodolfo Robles, Onchocerca volvulus transmission has been eliminated from the Central Endemic Zone. American Journal of Tropical Medicine and Hygiene 2015 Dec; 93(6): 1295–1304.

  For more information on river blindness and our efforts to eradicate this disease: http://www.cartercenter.org/health/river_blindness/index.html

  Date of event: 2001

  The Miracle in

  the Middle

  Mark F. Cotton, M Med (Paed), PhD

  For a child born almost anywhere in Africa in 2001, and for that matter in many parts of Africa still today, the phrase “medical miracle” is an oxymoron. The cumulative devastations of famine, disease, and dire poverty conspire to make good outcomes a rarity. This is all the more so for children born with AIDS, the rate of which was still growing alarmingly in 2001 before it finally peaked in 2002. That’s what makes this baby’s story so miraculous.

  Little “Anna” was born in 2001 to a mother living in one of the poorest “informal settlements” (dense clusters of thrown-together, ramshackle huts and shacks where the destitute live) in South Africa. Ea
rly in life she devel-

  oped chronic lung disease, a common manifestation of congenital (acquired at birth) AIDS. She was dependent for survival on receiving supplemental oxygen through a tube in her nose attached to an oxygen tank. She could not possibly receive such therapy in her home, a shack without plumbing and electricity. She lived in our hospital for more than three months with no sign that her lungs would ever heal enough to be able to return home. Such is the nature of the AIDS lung disease in babies.

  In the hospital, she spent almost every minute of her life lying flat on her back, receiving oxygen. Trying to breathe was her main job—there wasn’t energy left for rolling over, or smiling, or playing with a rattle. There also wasn’t enough energy left to grow, and she was failing to put on weight. We all loved this little baby—the doctors, nurses, and aides. We took her for walks, along with her oxygen, whenever anyone had a free moment. But the hospital was always understaffed, and there were few free moments. So mostly she just lay there, alert, aware of everyone around her, desperate to develop as a baby, but simply too debilitated by her lung disease and her inability to eat.

  We now know that using “triple therapy”—three powerful drugs that treat HIV, the virus that causes AIDS—is the most successful approach to treating patients, including young infants. The first clinical trial of triple therapy for children in South Africa began in 1998 and was funded by a pharmaceutical company. Early results looked very promising, and we began trying to raise independent funds to pay for kids’ triple therapy once the clinical trial was over and the pharmaceutical money gone. Thanks to private fundraising efforts led by my wife, Reena, and others, especially HOPE Cape Town, we were able to buy triple therapy for little Anna and a number of other babies that year. The pharmaceutical company gave us a limited grant to buy anti-HIV drugs for the ongoing treatment of the 1998 study patients, of which Anna was not one (she was born in 2001, too late to be included in the study). By a combination of private donations and that grant money, we patched together enough stocks of medicines to treat Anna and the others. But for how long could we continue to afford to treat these babies? We knew that once the money ran out and their therapy ended, their HIV infection would flare, their AIDS would relapse, and they would die.

  The results in Anna were nothing short of amazing. True to the impressions we were getting from the 1998 study and from similar research else-where about the benefits of triple therapy, Anna dramatically improved. Her lung disease was cured by the anti-HIV drugs—cured! She no longer needed oxygen, she gained weight, and she caught up on her developmental mile-stones. Assessments of the living situation of her biological mother, who was never able to visit her child in the hospital, were bleak. Anna’s biological father had deserted the family when he heard his wife and daughter had AIDS. Anna’s biological mother found a new partner, but didn’t disclose her HIV infection to him, and was now pregnant again. It was clear that a foster home would be needed to provide adequate medical care for Anna, and we found an excellent placement for her. We didn’t know how, or for how long, we could afford to pay for her triple therapy, which was lifesaving.

  We managed to beg, borrow, and stretch our funding for Anna’s and the others’ treatments from 2001 to 2004. Then, just as we were confronting the reality that the grant funding was ending and we had run out of private donations, a miracle arrived from the unlikeliest of sources: the government of South Africa announced it would provide free access to triple therapy for all AIDS patients in public clinics. Because of our experience with anti-AIDS drugs for children, our clinic was one of the first to obtain these life-saving medicines for children, with just days to spare before Anna’s therapy would have ended.

  Anna continued to thrive in every way, receiving her triple therapy in her foster home without interruption, never knowing how close we came to failing her. Sandwiched exactly in the middle between the first clinical trial for children in 1998 (three years before Anna was born), and 2004, the year effective therapy finally became available to all babies born with AIDS in South Africa (but three years after she needed to begin treatment), it wouldn’t have seemed as if Anna had much of a chance of survival. Without the anti-HIV medicines, she would have wasted away in the hospital and died of her lung disease.

  Instead, thanks to the highly improbable confluence of Good Samaritans’ generosity, a grant from a pharmaceutical company, and the government’s timely policy change, Anna is a survivor of AIDS in Africa.

  Miraculous.

  For more about HOPE Cape Town: http://www.hopecapetown.com

  Date of event: Early 1990s

  When the Student Is Ready, the Teacher Appears

  David Addiss, MD, MPH

  On a granite wall in the lobby of the World Health Organization (WHO) headquarters in Geneva, an aspirational vision is inscribed in several languages: “The attainment by all peoples of the highest possible level of health.” Within this building, and in medical centers, public health agencies, and clinics around the world, an estimated 59 million people in the global health workforce labor to improve the health of all people—including some of the most marginalized and neglected populations on earth. The people who benefit from their dedicated efforts may never know—or even be aware of—the millions of global health workers who serve on their behalf. Yet, over the course of time, the results of those efforts are nothing short of miraculous.

  At its best, global health represents a massive effort to alleviate and prevent human suffering, without regard to race, religion, nationality, or creed. Those who work in global health aim to improve the health of entire populations. They deal with numbers, graphs, and statistics. They may work in sprawling government agencies or in small volunteer organizations. What motivates this outpouring of compassionate action? What is it that makes this work so deeply meaningful? What is it that sustains the spirits of these workers in the face of overwhelming challenges of disease, poverty, bureaucratic frustrations, political inaction and, at times, insecurity and conflict?

  Often it is a personal encounter with a particular individual that has provided the most powerful inspiration. The stories of these encounters, which may have lasted only moments, can sustain an entire career. The content of these stories varies. Community health workers may remember a neighbor or community member who endured a devastating illness with dignity and courage, or they may have borne witness to the life-saving power of a simple intervention, such as oral rehydration. Physicians may recall particular patients whose lives touched theirs, perhaps with a sense of gratitude in having accompanied and been of service to someone who overcame a serious illness. Some of the most poignant stories are “wake-up calls,” in which assumptions were challenged and the limitations of the health worker’s knowledge or efforts were starkly revealed. My colleague, Frank Richards, beautifully describes such an encounter in another essay in this book (“The Miracle of a Single Sentence”). My story was also a “wake-up call.”

  During the early 1990s, I was part of a scientific team at the Centers for Disease Control and Prevention (CDC) studying new drug treatments for lymphatic filariasis (LF), a disfiguring tropical disease caused by parasitic worms that are spread by mosquitoes. In humans, the adult worms live in the lymphatic vessels, channels that drain excess fluid and waste from body tissues. The damage to these vessels caused by the worms results in swelling of the leg, known as lymphedema, in an estimated 14 million people worldwide. As lymphedema progresses to its advanced form, elephantiasis, the skin becomes rough, thick, and hard—elephant-like. These changes in the tissue reduce the movement of the affected limbs and the ability of its victims to work. Episodes of pain, inflammation, and high fever, called acute attacks, occur, further damaging the skin and underlying tissue.

  The prevailing hypothesis at the time I began in this work was that those horribly painful and debilitating acute attacks were triggered by the body’s own reaction to the adult worm, that the progression of lymphe
dema was due to that abnormal immune response, and that nothing could be done to alter the course of the disease. In many communities where LF is prevalent, lymph-

  edema is considered a mark of shame, a sign of having been cursed; those who develop lymphedema are to be avoided for fear of contagion. People with LF sometimes consider the social, psychological, and emotional suffering of stigmatization to be worse than the physical suffering it causes.

  As I joined the CDC team and began traveling with them to Ste. Croix Hospital in Leogane, Haiti, I was struck by how little we understood about this ancient disease. We began to investigate some of the most perplexing questions about LF by correlating clinical and laboratory findings on individual patients. My role, as the clinician on the team, was to examine patients after my colleagues, laboratory scientists, had tested their blood for the LF parasite. To those who were infected, I gave a standard dose of the recommended medicine, diethylcarbamazine (DEC). A very brief encounter with one of these patients changed the course of my life.

  It was a hot, humid August night in the outpatient clinic of Ste. Croix Hospital. Toward the end of the evening, a thin young woman, seventeen years old, approached the airless, stifling examination room where I was working. I greeted her and invited her in, noticing that one of her legs was already swollen and the skin was starting to thicken. I learned through a translator that the swelling had begun two to three years earlier and it was getting progressively worse. I was tired. It had been a long day. In a rather perfunctory way, I took measurements of her leg, did a cursory examination of her heart, lungs, and limbs, and checked the laboratory sheet, which told me that, indeed, she was infected with the LF parasite. According to protocol, I measured out the proper number of DEC tablets for her weight, placed them in her open hand, provided a cup of water, and asked her to swallow the pills. I will never forget what happened next.