SEPTEMBER 16, 2018
DANIEL BAXTER is a front-line physician and HIV specialist at the William F. Ryan Community Health Center in New York City and the author of The Least of These My Brethren: A Doctor’s Story of Hope and Miracles on an Inner-City AIDS Ward (1997) and the recently published memoir One Life at a Time: An American Doctor’s Memoir of AIDS in Botswana. A board-certified internist, he worked for three years at the Spellman Center for HIV-Related Diseases in New York before spending more than six years in Botswana providing direct patient care, teaching health-care workers, and mentoring physicians under the aegis of the African Comprehensive HIV/AIDS Partnerships. In 2013, he returned to Botswana for another two years to work at the country’s new medical school, heading up teams of residents and medical students at the country’s largest hospital, caring for patients with end-stage AIDS. This conversation took place over email in May and June of this year.
WILLIAM GIRALDI: One Life at a Time opens with your decision, in 2002, to leave your high-profile job as the medical director of a large community health center in New York City and move to Botswana in order to help with its new National HIV/AIDS Treatment Programme. You’d been helping AIDS patients since 1992, at St. Clare’s in Manhattan. St. Clare’s, you say, was the first time you “came up against the full horror of AIDS,” and yet that horror was diminutive compared to what you’d soon witness in Botswana, where a staggering 24 percent of the population was infected with HIV the year you arrived. You describe Botswana as “the size of France, landlocked, and mostly desert — the Kalahari comprises 70 percent of it — and it’s one the most sparsely populated countries in the world,” with a million fewer people than live in Brooklyn. What fueled your decision to move there?
DANIEL BAXTER: My decision to move at age 52 to an African country I knew next to nothing about was the culmination of a medical career which had evolved over many years, from initial ignorance of who I was, to a greater understanding of both myself and our common suffering. As with most things in life, it was a process. My medical career has spanned the trajectory of the HIV/AIDS epidemic — from the first disquieting reports in the 1980s of previously rare infections and cancers in young gay men, to the terror in the gay community, to the so-called “new face of AIDS” in drug users, women, and people of color, to the advent of life-saving treatments in the mid-1990s, to the devastation in sub-Saharan Africa, and finally to the introduction of HIV treatments there. My 43 years in medicine have been a journey of self-discovery and self-creation as I moved beyond the cluelessness of my early years of being a doctor to a greater appreciation of how my patients can teach me how to live with integrity and love, eventually — I hope — to face my own death without fear.
It is amazing how many important life decisions, e.g., choosing a professional career, can be made without any serious introspection. Such was the case with my going to medical school. I was finishing undergraduate work at Ohio State University, with a degree in chemistry, but the option of pursuing a PhD in some aspect of that discipline sounded boring. Talking more out of my ass than really speaking my heart — I didn’t know my heart very well at the time — I told people that I didn’t want to relate to just test tubes, chemical reagents, and the occasional PhD student down the hallway, and that I wanted more human interaction, thus choosing medicine. Although I also mouthed the bit about wanting to help sick people, I really had no idea about human suffering, especially my own. Plus, my low draft number and the deferment for medical school heightened my commitment to medicine and to helping others.
Doctors, like soldiers, typically enact the necessity of emotional suppression in order to get the job done. Remember Milton’s line from his great masque Comus: “Those budge doctors of the Stoic fur,” in which “budge” means “burly” or “strong.” But what’s clear from your book, and from what you say here, is that you wanted no part of that: you came to see that your commitment as healer required your deep emotional engagement and even the acknowledgment of your own weaknesses.
Yes, during the decades after Ohio State I learned and then practiced the mechanics of medicine, but not the art of caring, of understanding the suffering of my patients and applying it to my own life. I assiduously avoided emotional involvement in my patients’ suffering, cultivating a studied detachment, which, sadly, even stifled my emotional response to the terminal cancer afflicting my closest friend from Ohio State: I remember visiting John Rock in the hospital — he was the first of my many unrequited loves — and having no reaction to his profound wasting and imminent mortality. To my eventual shame and regret, I didn’t even tell him that I loved him during that last visit, a few weeks before he died in 1977. If I couldn’t be moved by John’s suffering, how could I be expected to empathize with my patients?
But the terrifying advent of HIV/AIDS in the early 1980s shattered my detachment, since, as a sexually active gay man, my own complacent life was now directly threatened. As reports of strange and fatal infections percolated down to my private practice in Iowa, I tried to learn as much as possible about this new virus, especially its modes of transmission, primarily to protect myself from what back then was certain death. Geography probably saved me: had I lived in one of the major urban areas, I most surely would have perished with so many others.
But over these early years of the epidemic, my ongoing interest in HIV medicine gradually evolved into more than just a self-protective stance. Although the science of HIV was intriguing — a beyond-microscopic virus infects the body’s important immune cells, causing devastating infections — it was the philosophical and ethical aspects of this new disease which seized my attention. I reacted with horror at how HIV-infected people were treated as lepers, or worse. Maybe because I was still in the closet and had always felt an outsider in the macho medical group I worked at in Iowa, I somehow identified with the shame and guilt which had been infused into this anonymous virus. HIV had become associated with hatred and intolerance toward “the other,” people who were different and judged to be not “normal” or even worthy of love and caring. I suppose it was the stubbornness I had inherited from my mother, but I was outraged at how HIV-infected people were regarded as untouchables.
You did eventually relocate to the city, first DC and then New York, a move you discuss in One Life at a Time but also in your first book, The Least of These My Brethren. This strikes me as an intensely courageous move since you knew that the work there would be terrifying and that you yourself might be at risk. But moving to those cities was also an essential prelude to your decision to go to Botswana.
Yes, I moved from Iowa to Washington, DC, in 1989, primarily to learn more about HIV, and there I saw firsthand how the gay community, which, to be sure, had suffered immensely from the plague, too often looked on HIV as their own special Calvary. The smug, politically correct posturing of many of the leaders of the gay community was very off-putting, especially since by then it was known that the major targets of HIV were IV drug users, women, and people of color. Thus, in 1992 I leapt at the opportunity to move to New York City, to work in a decrepit, hole-in-the-wall AIDS ward at St. Clare’s Hospital, where I cared for the so-called “new face of AIDS” among the so-called lowest of the low: the drug addicts, the homeless, the prisoners and ex-prisoners. Somehow, even though there were no effective treatments, my work at St. Clare’s seemed more real, more vital, since these were people who had been outcasts even before HIV had struck them down. At St. Clare’s I realized that we are all HIV-positive in this weary sojourn of life, regardless of whether our HIV tests return positive or negative. This seemingly trite but crucial insight — that we are all on the downward spiral to the grave, some of us rapidly and others more leisurely — this insight should mitigate the shame and discrimination so rampant back then.
After moving on to work at the Ryan Community Health Center, where many of our HIV patients were among the dispossessed and marginalized, I eventually sensed that with the new effective therapies and the generous social services for our HIV patients, HIV care in the United States was largely on track, that the emergency was passing. After attending the 2000 International AIDS Conference in Durban, South Africa — the first such meeting in a non-Western county — I learned of the full scope of the catastrophe facing sub-Saharan Africa and felt a moral imperative to help. Just as when I accepted the job at St. Clare’s, I had no idea what I was getting myself into when I accepted the job in Botswana, but I felt that my experience in caring for AIDS patients and witnessing death and suffering at St. Clare’s would prepare me for the onslaught in Africa. But as my book chronicles, I was wrong.
I also took to Botswana my growing animus toward what I felt were the spoiled, demanding, and entitled patients in America, who, I maintained, had no clue about the real suffering I knew I would find in Botswana. I thought that my prior AIDS work had given me a perfect understanding of life, suffering, and my own heart. Little did I know at the time how my arrogance would pull me down into the maelstrom of AIDS in Africa — soon after I arrived, I had two patient catastrophes, largely due to my hubris and rank ignorance of how things were in Africa. But after deconstructing me, Africa’s infinite time and space allowed me to soldier on, to save myself. I came to understand that the only person I can ever “save” was myself — if I was lucky — and that all I could do for my patients was give them precious extra time to save themselves, if that was indeed even necessary. As I soon learned, most of my patients in Botswana had a deep spirituality that gave them strength to confront AIDS. Legion were the times an AIDS patient would recount to me her unfathomable woes but then conclude with the resolute assertion, “But God is good.” This optimism in the face of profound adversity also buoyed me up whenever I found myself nearly drowning in the sea of need there.
To save yourself spiritually by saving others, yes. I’m thinking of Allan Gurganus’s show-stopping novel Plays Well with Others, about the scourge of HIV and AIDS in Manhattan in the early 1980s, and how those brigades of loyal and courageous gay men rushed in to nurse their stricken when the health-care apparatus and our government was pitiably, unforgivably slow in giving support or even acknowledging the scourge. Tens of thousands went to the grave before President Reagan could even utter the word “AIDS,” and so the gay men were mostly on their own to nurse one another. Gurganus’s novel is a lovely, lasting homage to those many Whitmans among the wounded. Did you see a similar breed of care and camaraderie during the AIDS pandemic in Botswana?
That’s a very interesting question, and one that highlights the different approaches people in Botswana took in addressing the AIDS crisis. It’s probably best to look at it from the standpoint of first the patients and then the local health-care workers and outsiders like myself involved in implementing the National HIV/AIDS Treatment Programme. This Programme was the first such comprehensive initiative in Africa and, in a way, was a massive public health “experiment” to see if Africans could really do it, that is, rescue people from AIDS on a massive scale.
First the patients: For countless generations, the Batswana had shared a deeply held sense of community, with the family and the village taking center place. In fact, in Botswana, AIDS really was “a family affair,” with multiple members of a family stricken with the disease and the remaining healthy ones looking after their sick relatives. The combinations and permutations of such family dynamics were many: an elderly aunt could be caring for her young niece, or vice versa; a younger sister could be looking after her much older brother or, if the brother had already succumbed to the disease, his wife and their children, and so on. Many times, HIV-infected children orphaned when their parents died from AIDS would be taken in by distant relatives. There were really no social services for families to draw upon — the only government-provided “entitlement” AIDS patients got was a monthly food basket consisting of flower, some canned goods, rice, and vegetables. Family members were also enlisted to help their infected relatives with taking their HIV drugs — the National Programme strongly encouraged every patient to have an “adherence partner,” to be sure the patient took the medicines regularly and without fail. Indeed, many times the patient would be so far gone, wasted away and suffering from HIV dementia, that they could never be counted on to remember to take their medicines, and a devoted adherence partner, usually a family member, would be their only salvation, ensuring that they took their drugs and eventually recovered.
I’d say no place better illustrates the Batswana’s sense of community in combating AIDS than the cramped waiting rooms in the HIV clinics throughout the country. There wasn’t the sepulchral silence of waiting rooms of HIV clinics in New York City, where patients studiously isolated themselves from the others. Rather, in Botswana the clinic waiting rooms, always jammed beyond belief with patients, friends, and family members, rang out with what seemed like hundreds of voices competing for attention, as people shared the latest village gossip, or attested to the healing powers of the new HIV treatments, or traded tips on how to counteract their side effects. Although shame and stigma about HIV was rampant throughout the country, somehow, in the clinics, these negative feelings were largely left at the door, as everyone struggled against the plague, seemingly in unison. In fact, the loud scenes in the HIV clinics reminded me of the noisy bantering I would always hear in the locker room of my gym, where the guys would playfully chat about sports and girls, all at the top of their lungs.
In addition to their innate sociability, the Batswana lived in the moment, and their zest for living leavened many of the sad stories I encountered there. This was a country where the application for a driver’s license asked me: “Are you, or have you ever been an imbecile?” and where the daily tabloids were replete with stories such as “City Police Arrest Serial Donkey Rapist.” Indeed, my book is far from doom and gloom — far, far from it — and even the most pathetic situations were often, ironically, tinged with humor and levity.
There are similarities there to what one sees enacted so beautifully in Gurganus’s novel: all those loyal dear ones at the sides of their dying. In your book, though, you express regret that the benevolence of the Batswana toward their own was not always replicated at other levels, especially among those Western hawkers and hoodwinks who’d showed up to get rich.
Yes, unfortunately, the sense of camaraderie and shared community that the Batswana relied upon to get through their AIDS crisis didn’t always carry over to the people who were treating them and implementing the Treatment Programme, especially among outsiders like myself. By the time I arrived in Botswana, approximately six months after the first patients started treatment, the country was awash with Westerners who were ostensibly there to help its fledgling Treatment Programme. In addition to the worthy goal of trying to help people with AIDS, there were three other major enticements for us Westerners to come there: trips to the game reserves up north to see wild animals — you haven’t lived until you’ve seen an infinity of elephants, their young in tow, meandering down to the river at sunset, kicking up a golden scrim of dust — plus, the irresistible lures of profitable consultancies and cutting-edge medical data to publish and add to your CV. Although very little aid from the West ended up in people’s pockets there — Botswana is pretty graft-free, at least for Africa — the millions of dollars from the West, primarily the United States, spawned all sorts of consultancies, which, of course, paid generous fees to their directors. As I wrote, a colleague of mine, an internist from India, once loudly proclaimed, “There’s money to be made from AIDS, and I intend to have some of it!”
But in all fairness, there were also good people from the West. If it weren’t for several young doctors from Harvard, who were in the country to start up an important clinical research project, the Treatment Programme wouldn’t have started when it did in early 2002. Frustrated with the red tape typical of such a monumental public health project — one of the legacies of the British was a bureaucracy that gave new meaning to the word “Byzantine” — the Harvard doctors, with crucial help from their Batswana nursing staff, just started treating patients, thus bringing into being Marina Hospital’s HIV clinic, the first in the nation.
How did the Batswana doctors and nurses react to the epidemic? Your book has loving portraits of some pretty impressive and merciful people.
Yes, the Batswana health-care workers — the doctors, social workers, and, above all, the nurses — more often than not emulated the shared sense of community of their patients and were empathetic and understanding of their patients’ needs. The nurses were teachers and mentors for their patients, who, after all, were often friends, neighbors, and even relatives. The nurses were helpful in assessing whether or not a patient was ready to start HIV treatment — more often than not, they knew all sorts of personal details about my patients — and I almost always followed their advice in this regard. The nurses were also responsible for adherence education, which was given both one-on-one and in group sessions, which usually included hymns, Bible readings, and prayers by one of the local pastors. Imagine something like that here in New York! Like worried and scolding mothers, nurses in Botswana’s AIDS clinics would beat into their patients two cardinal precepts: HIV therapy was lifelong, and it had to be taken one hundred percent of the time, usually interspersed with loud exhortations to “condomize, condomize, condomize!” It was as if the honor of your family, your village, even the entire nation was on your shoulders as an HIV patient. During my stay in Botswana, there were many nurses whose compassion and dedication to their patients were truly impressive. In particular, I remember Rachael, a clinic nurse in an out-of-the-way dilapidated hospital in the remote Kalahari Desert, who knew so much about the personal lives of the patients I saw with her, and whose love for her fellow sufferers — she was HIV-infected but, “Thanks be to God,” doing well on treatment — humbled me. As I wrote in my book, she probably had helped many more patients than I ever did.
At one point early in the book you speak about the South African president Thabo Mbeki, who as late as 2000 was still putting forth the belief that HIV didn’t cause AIDS. Mbeki’s Minister of Health, Dr. Tshabalala-Msimang, was known as “Dr. Beetroot” because she distrusted Western medical science and somehow convinced herself that beets, garlic, and herbs would cure HIV. This ignorance, according to a study done several years ago, probably caused the deaths of 300,000 South Africans. You also say at one point that in Botswana, AIDS “was sometimes regarded as a curse” inflicted by “a powerful witch doctor.” We in the West might have a hard time understanding the cultural realities that spawn such thinking. How do you understand them?
Well, remember that many of us in the West are also enamored of unproven treatments such as crystals, aroma therapy, megavitamins, and a host of herbal “medicines,” probiotics, and anti-oxidants. And many people in the States put great stock in Zodiac signs and horoscopes. Likewise, for countless generations the Batswana had looked to the heavens for answers, and many believed that, as part of an unforgiving Mother Nature, the behemoth of AIDS had to be placated with their own versions of crystals, anti-oxidants, and aroma therapy, often provided by a witch doctor or “traditional healer.” At the KITSO course, the “HIV 101” training for the country’s health-care workers I headed up for many years, I would joke that in Botswana these unproven treatments — “muti” — were called “traditional medicines,” whereas in America we called them “alternative medicines,” neither of which had FDA approval and both of which relied entirely on “the placebo effect.” Yet, the miracles of the HIV medicines introduced into Botswana from the West gradually chipped away at the seeming invincibility of AIDS, and with it, the invincibility of the old gods and ancient beliefs of its people.
The cultural and spiritual consequences of the major perturbations wrought by the West’s intervention in Botswana’s HIV crisis are yet to be fully reckoned. Every so often during the first couple of years of my stay there, various journalists and freelance writers from the states would interview me about the country’s HIV/AIDS Treatment Programme, hoping to write a definitive account of the great public health initiative unfolding there. I would always be courteous — usually they paid for our lunch or dinner — but I couldn’t give them the scoop, the juicy news, or, in some cases, the scandals they were looking for. Indeed, even 16 years after the Treatment Programme began, I don’t think the final story can yet be written. Before the AIDS crisis hit Botswana, it was really a quiet, sleepy country — in my book I described it as the African version of Switzerland — and in a matter of a few short years it was overwhelmed by both skyrocketing deaths from AIDS and us crazy people from the West with our frantic efforts to force the country into the West’s medical mold of regular doctor visits. It’s not that the Batswana didn’t care about their people dying from AIDS, but they felt that much of the solution was in God’s hands, not ours. My book tries to describe the seismic changes that have shaken this tiny country as it confronted both the horror of AIDS and the onslaught of us Westerners with our HIV drugs and our own cultural values.
Tell me your prognosis for the AIDS situation in Botswana. Things there today are different from what they were when you first went there in 2002, thanks in large part to the National HIV/AIDS Treatment Programme to which you contributed so much. Does your hope remain buoyed?
The prognosis is very good! Yet, there still are people falling through the cracks, not getting HIV tested for whatever reason — shame and stigma still are problems there — or testing positive and not following through and getting treatment. When I returned in 2013 to work in the medical school there, I had thought that the success of the HIV/AIDS Treatment Programme — over 95 percent of Batswana eligible for treatment were receiving it — meant that there would be only rare patients with end-stage AIDS, but I was wrong: at Marina Hospital, the country’s major referral center where I headed up teams of residents and students, there were too many patients with all sorts of terrible complications of AIDS. It’s the old question, “Is the glass seven-eighths full or one-eighth empty?” Even in neighboring South Africa, which has the largest HIV treatment program in the world, the statistics are heartening: over 60 percent of the HIV-infected population is on treatment. Of course, there would be even more, if it hadn’t been for President Mbeki’s willful ignorance at the turn of this century.
Indeed, Botswana’s HIV/AIDS Treatment Programme has progressed over the past 16 years to the point that its “first-line” treatment regimen is identical to that here in the West. The challenge now facing the country is addressing the many non-HIV medical conditions there, which have largely been neglected over the years because of the country’s mobilization to save people from AIDS. When I was there, I saw many patients with strokes and heart attacks that were complications of untreated high blood pressure, or end-stage kidney disease from out-of-control diabetes. And screening for colon, cervical, and breast cancers was nonexistent. Now that HIV is largely under control, the country will hopefully devote more resources to these problems, which affect far more Batswana than HIV does. As a sort of silver lining to the turmoil of the past two decades, the health-care infrastructure and training the AIDS crisis created should give the country a leg up in addressing these non-HIV medical conditions.
Over the past several years, all of the major international AIDS conferences have been devoting more and more of their scientific sessions toward searching for a cure, late-breaking research into either eradicating HIV from the body or, perhaps more realistically, finding a “functional cure,” where HIV is still in the body but remains quiescent without the patient having to take any HIV medicines. Sixteen years ago, when I first arrived in Botswana, such talk would have been regarded as pie-in-the-sky, even delusional. But let’s remember how only 18 years ago, at the Durban AIDS Conference in 2000, talk about just getting large numbers of Africans on HIV drugs was regarded by many of us in the West as an unattainable goal. So such a cure, when it is found, might someday come even to Botswana. One of the many lessons from Botswana’s successful HIV/AIDS Treatment Programme is that we must never underestimate the resiliency and indomitability of the human spirit. My book is a “one life at a time” testimony to this human spirit, and, I hope, a tribute to both the doomed and the spared I had the privilege of caring for.
William Giraldi is the author of the novels Busy Monsters and Hold the Dark (soon to be a feature film from Netflix), the memoir The Hero’s Body, and a collection of literary essays, American Audacity.