I happened to stumble upon a preview chapter of the soon-to-be-published book Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. The selection piqued my interest in what was to come. Being impatient, I reached out to author and Rutgers University researcher Julie Livingston to chat about the book, her research, cancer in Botswana and the narrative style of the book.
It is well timed as one year ago noncommunicable diseases were at the top of the agenda at the UN General Assembly. As global leaders gather once again, questions have been raised concerning the state of NCDs one year later.
According to the WHO, an estimated 70% of cancer deaths take place in low and middle income countries. Furthermore, the WHO also says that 30% of cancer deaths can be prevented. With the majority of deaths taking place in resource-strapped countries, it is also where the most improvement can take place. I am happy to share with you the conversation.
AVFTC: You set out to tell one story, but ended up with something very different. What happened?
Julie Livingston: I think this sort of evolution of the research question often happens to historians and anthropologists. One of the many strengths of ethnography (the method at the heart of this book) is that is enables us to flexible in the face of unfolding research. As we carefully listen and watch, and experience, new questions necessarily emerge, which in turn are folded into the research process. In this way careful ethnography can also operate as an "early warning" system of sorts. And this is what happened to me. I arrived in Botswana preparing to study questions of pain and laughter, historically and ethnographically. I entered Botswana's cancer ward as one potential research site among many I intended to visit, and instead of moving on to the other sites, I stayed in the cancer ward. What I found there were important answers to some of my questions about pain and laughter, but also a host of other questions about the emerging cancer epidemic in Africa and its attendant politics of causation and care.
AVFTC: Almost immediately, you reference Binyavanga Wainana's essay "How to Write About Africa." How has that essay shaped your writing about stories from Africa? How did it impact this book directly?
JL: I like Wainana's essay. It's so astute, and totally hilarious. But I am using it in the preface mainly as a rhetorical device. The problems of representation he describes are already well-known among Africanist scholars (and of course equally so among Africans more broadly). So reading it was not revelatory to me, but I completely appreciate his aesthetic. I think he is a fantastic writer.
AVFTC: NCDs made some buzz at the UN General Assembly last fall, but have returned to relative obscurity in the terms of their impact on low and middle income countries. What can get NCDs back onto the public agenda and forum?
JL: I am not sure I am the best person to answer this question, since I do not have the difficult job of shifting or shaping global health agendas. I will say, however, as a careful and long-term observer, I would like to see NCDs back on the agenda as part of a comprehensive push to strengthen public health systems on the ground (as opposed to research enclaves, and/or vertical programs). But also that I would hope that part of the necessary politics of putting NCDs on the UN Political agenda will be addressing questions of causation at the population level and not merely at the level of individual behavior. As toxic capital -- be it tobacco, cheap sugars, fats and processed foods, nuclear and toxic waste -- are increasingly opening markets in lower and middle income countries, and as extractive industries (like the uranium mining the Gabrielle Hecht writes about in her recent book) continue to put workers at risk -- we need tighter rules and stronger scrutiny and policing for those who seek to subvert the rules to protect people from long-term harm. People with diabetes, cancer, hypertension, asthma etc. in low and middle income countries urgently need and deserve meaningful care -- but we also need to prevent creating the distorted infrastructures that underlie this kind of bodily vulnerability in the first place, and often the profit motives that animate these relationships are based in the global north.
AVFTC: You have done research in Botswana for quite some time and witnessed significant changes in the country. What changes in terms of health have stood out to you?
JL: A great deal has changed in Botswana since I first went there in the early 1990s. There has been a significant development of infrastructure (roads, telecommunications, clinics, schools etc), and a rise in conspicuous consumption. The end of apartheid across the southern border in South Africa, the collapse of Zimbabwe to the east, have shifted the regional economic and political dynamics significantly. And of course the HIV/AIDS epidemic has had a profound impact on people by causing deep moral and existential questioning and debate among people in philosophical, political, theological, and social terms. The AIDS epidemic has, of course, also brought the AIDS industry - and the presence of AIDS capital and personnel is palpable (especially in Gaborone, the capital).
One of the things I most admire about the Botswana government's approach to the HIV/AIDS epidemic, has been their refusal to allow those who come in from the outside to rework the national public health agenda by creating parallel structures, regardless of what sort of capital and expertise they bring. The Ministry of Health and the government more broadly holds the long-term vision, and while they may not always act as quickly as their foreign partners would wish, instead they act with great determination and direction. Global health workers who are on contract in Botswana have often complained to me about the pace of meetings and decisions, the bureaucratic hoops etc, and yet they also seemed to write off Botswana's economic, political, and developmental successes as some sort of accident of history. Yet the presence of diamonds in other places has been a source of violence rather than development in many places, Botswana's geopolitical location couldn't have been worse for the first few decades of its independence, and its supposed lack of ethnic diversity/conflict is a purposeful historical product. Perhaps that very same stubbornly paced, decision-making apparatus in the civil service that global health workers criticize is in fact, a very good strategy for maintaining a steady and peaceful development trajectory amid the unpredictable problems, interests, and set-backs that continually arise.
AVFTC: What challenges stand out to you in terms of patients having access to high quality cancer treatment?
JL: There are so many challenges that cancer patients face in lower and middle income countries as they seek high quality care, many of which are described and analyzed in detail in my book. But I will just mention two of them (leaving aside very important questions about human resources, access to radiation and imaging technologies, the screening programs etc).
The cost of newer cancer drugs is prohibitive and this means that many potential therapies are simply not available. But even effective cheaper, off-patent regimens are out of reach for people in lower and middle income countries where health care has been privatized. Most places (including the USA where I live) do not offer the universal care that Botswana or Rwanda do. For patients and relatives in these places to pay out of pocket for cancer care is a grave ethical crisis and a clinical impossibility. For example, during a visit to Zimbabwe I saw patients who could buy one or two of the drugs they needed for a chemo cycle. So if the doctor is treating their Non-Hodgkins lymphoma with CHOP (a regimen of all off-patent drugs), they should have cyclophosphamide, doxorubicin, vincristine, and prednisolone all given together; but the patient and his/her relatives who must purchase their drugs in the private pharmacy and then bring them to the hospital, finds that they lack money for the full regimen so they purchase say vincristine and prednisolone only.
Another serious problem that I hope can be remedied by the global health establishment is the problem of access to opioid analgesics and strong anti-emetics. As Human Rights Watch and others have established, we will need changes at the legal level, as well as in training and infrastructure to make pain relief an achievable goal in cancer care in lower and middle income countries. With anti-emetics, cost will need to come down for the more effective drugs, and they will need to be directly bundled into cancer care programs as they are developed. We need to acknowledge that profound nausea and vomiting of this type is unnecessary and unacceptable, and that in many cases it is aversive enough to prevent patients from completing their treatment cycle.
AVFTC: How would you characterize discussions about cancer in the area you studied? What is the general understanding about cancer and how to people react upon learning that they have cancer?
JL: Awareness of cancer is growing rapidly in Botswana, and southern and east Africa more broadly as the incidence is rising and as a number of public programs around HPV and cervical cancer, Kaposi's Sarcoma, tobacco, breast cancer etc begin to take hold of the public imagination. Many patients in the region are quite savvy about biomedicine, given the extensive experience they now have with HIV, tuberculosis, hypertension etc. But cancer still presents novel challenges, because of course it is really a family of hundreds of different diseases, and experience or knowledge from one doesn't always extrapolate to another type of cancer.
AVFTC: What do you hope that other people can learn from reading the story about a hospital in Botswana?
JL: First, I hope that people from other parts of the world reading about this one cancer ward, can understand and embrace these patients (and African patients more broadly) as part of a larger community of suffering. There is a tendency for people in the global north to see Africans or patients elsewhere in the global south as inherently different, and as in need of salvation, rather than as fellow human beings with shared concerns, capable of meaningful insights, and imbricated in a larger politics of knowledge and practice. I also think that Botswana have thought quite deeply about death, about the ethics of care, about rationing, about our responsibilities to one another, and there is a tremendous amount that patients, policy makers, and clinical staff can learn from Botswana nurses, patients, relatives, and policy makers that we can bring to our own experiences and practices of cancer and politics of care.
AVFTC: Why share the first chapter of the book publicly?
JL: Good question - making the first chapter publicly accessible is the idea and policy of the marketing department at my press (Duke University Press). I had nothing to do with it - but am happy they did it.
AVFTC: A focal point of the book is on a foreign doctor. What role can foreigners, whether it be NGOs, governments or donors, play in supporting the growth of health systems in Botswana.
What about researchers?
JL: Foreigners (not only North American and European ones) can play an important role in supporting the health system in Botswana, and across the region more broadly. They bring in expertise, labor, resources, all of which can be enormously useful. BUT -- and this is an important but -- foreigners need to do a few things in order to be effective, I think. First -- foreigners need to acknowledge that they do not have a monopoly on knowledge and ability. This means they need to check their salvation complexes at the door and recognize that local actors (be they nurses, doctors, pharmacists, policy makers, technicians) have all sorts of knowledge that they lack. Foreigners need to remember that institutions are complex sites, each with their own internal logic. The procedures, forms of clinical communication, and improvisation that hold in hospital in say, Botswana, are not random, and are often there for a good reason. One cannot enter an institution and presume to change it or push against it without first learning about how and why it works in the way it does. Foreigner health workers need to acknowledge that they come to Africa with their own career-making or personal interests, and so they can be grateful for the opportunity to learn, to further their own careers, and often to enjoy some nice travel and lifestyle benefits as part of their work. They need to acknowledge that despite the rhetoric about partnerships, local staff do not necessarily get to share in these benefits. Global health is a multi-billion dollar industry -- one that needs places like Botswana (and its patients) as much as Botswana need it. The salvation rhetoric often obscures the mutual nature of the interests at stake.
AVFTC: Research and writing like this can easily head in the direction of doom and gloom. It seems that you try to avoid that. What makes you hopeful or optimistic about treating cancer in Botswana.
JL: A cancer ward is indeed a depressing place. People are very sick, they are in pain, many are dying. But at least in Botswana, it is also a place where people are trying to care for one another. Where pain is eased, where lives are extended, and where deaths are taken seriously. And where cure or at least long-term remission is possible, several things make me optimistic about treating cancer in Botswana. We have seen in places like Botswana and Rwanda how relatively low cost, effective treatment for some cancers like Kaposi's Sarcoma, can be scaled up to great effect, preventing long-term debility and death. My colleague Doreen Ramagola-Masire is pioneering new see-and-treat approaches to cervical cancer (as part of her comprehensive women's health care initiative) in Botswana under the Botswana-University of Pennsylvania partnership, which has the potential to prevent widespread suffering and loss of life. Within the course of a decade Botswana went from essentially lacking oncology services at all, to developing a network of diagnostic and therapeutic services all within a system of universal care.