A Medical Detective Story
A review of Piecing the Puzzle: The Genesis of AIDS Research in Africa, by Larry Krotz
Death, disease and the power of research. That is the lens through which Larry Krotz tells the story in Piecing the Puzzle: The Genesis of AIDS Research in Africa about the journey of Canadian researchers to uncover the link between sexually transmitted infections and the spread of the human immunodeficiency virus, which causes acquired immunodeficiency syndrome, commonly known as HIV/AIDS. From Manitoba to Kenya and back, one discovery leads to another, resulting in a compelling story told through the eyes of Krotz, who worked with the main characters in the book over the span of 17 years. As he states, “I paid numerous visits to Nairobi, Mombassa, and Kisumu and felt both overawed and privileged to have such ready access to both an extraordinary venture of medical science and one of the defining catastrophes of history.”
Piecing the Puzzle begins with Ronald Arnold, head of the department of medical microbiology at the University of Manitoba, arriving in Nairobi in 1980 and working with the University of Nairobi to set up a lab linked to what was known at the time as the “Casino Clinic.” This clinic cared for 600–800 men per day suffering from a variety of sexually transmitted infections. These patients also became the source of data collection. Soon young researchers arrived from around the world, including Peter Piot, a now-famous academic and former executive director of UNAIDS. Over the course of five years, Arnold also sought Canadian talent: Margaret Fast, Frank Plummer, Joanne Embree and Stephen Moses. They and others from the University of Nairobi, working from a cramped and (at least initially) incomplete set-up of labs and equipment, began to track patients from the Casino Clinic to an area known for prostitution. From this research some key links were identified between STIs and HIV susceptibility, the risks associated with concurrent and multiple partners and the importance of condoms in the prevention of AIDS. Plummer released some of the evidence at the 1987 Third International AIDS Conference in Washington and “all hell broke loose.” First, the reality of the existence of HIV in Kenya was difficult for the Kenyan government to contend with. Second, Plummer also revealed that oral contraceptives increased the risk of HIV infection. This raised fury among the family planning establishment that had huge population control investments in Africa.
Woven into the research process is the story Krotz narrates of the challenges associated with raising research funds, cross-border transportation of human samples, securing government support and mitigating government interference. Although the author does not highlight it (and I wish he had), the sheer effort of negotiating these challenges reinforces the widely held view that HIV/AIDS is not just a disease but also a political and social phenomenon.
Other research findings are revealed as one turns the pages, demonstrating the tenacity of Canadian researchers. One researcher, Joanne Embree, discovers the link between long-term breastfeeding and the transmission of HIV to children. Then there is the story of Stephen Moses with Bob Bailey (from Chicago) and their drive to implement the “definitive study, the clinical trial that would link circumcision and HIV prevention.” Their efforts were halted by an independent scientific review body, but with what results they had, in 2007 the researchers published an article in The Lancet conclusively demonstrating the link.
Halfway into the book, Krotz starts to raise some questions and introduces key Kenyan contributions in one chapter called “The Kenyan Side: Squaring the Collaboration.” By highlighting the work of another Canadian, Stephanie Nolen, an internationally renowned journalist, the bigger development question is raised about what obligations researchers from high-income countries have to both the subjects of research and the communities in which they live. Nolen wrote, for example, about the research findings from the cohort of sex workers in the Majengo shantytown that paradoxically revealed that women who take breaks from sex work temporarily stop their exposure to HIV and rapidly lose their immune status. In her article featuring one of these sex workers, Agnes, Nolen raised the critical question of Agnes’s 20-year contribution to research with no concomitant researchers’ obligation to Agnes. It is disappointing that Krotz does not delve more deeply into Nolen’s reporting to further explore some of the “missing puzzles” about the cross-continental AIDS research challenges, but he does at least acknowledge the pervasive “power imbalances” of the North-South collaboration. Near the end of the book, Krotz questions the use and sustainability of the high level of financial investment in the battle against AIDS. UNAIDS reported the global investment for HIV/AIDS totalled $16.8 billion in 2011. Krotz highlights the challenge by quoting Peter Piot: “against AIDS we should be doing better with the same amount of money.”
There are two biases from which I read this book—one as a lover of a good story and the other as a social scientist who has had the privilege to work with a multidisciplinary team of low- and middle-income scientists doing community-based epidemiological studies in Africa on health and social issues. From a story point of view, the pieces in Krotz’s narrative are sometimes difficult to follow due to disjointed chronology. From a social scientist perspective and as a development agent, there is discomfort. There are missed opportunities here to discuss the dilemmas, incentives and disincentives of doing clinical research in the context of glaring inequities, suffering and hope. While this is a story of a 30-year research collaboration, the voices of the victims of HIV/AIDS are silent and the analysis of the political, social and cultural context in which this epidemic continues is absent. Not that there are no hints. There is even a reference to a nagging thought by one of the main characters/researchers but left unexplored by the author: “What if the lower HIV rates among those subjects were in fact a result of changes in behaviour and not a result of circumcision at all?”
Krotz contends that this book is a story of “one front in the battle against HIV/AIDS.” The Canadian researchers make the case for the importance of circumcision, treating sexually transmitted infections with drugs and using condoms. However, given the title of the book, Piecing the Puzzle, the pieces that are presented make up only a few pieces of the bigger puzzle of the AIDS epidemic where in 2011 there were 34.2 million people living with the disease, and another 2.5 million newly infected individuals. While clinical research has benefits, it assumes a technical fix for a disease that has strong social and cultural dimensions. To get to the roots of the AIDS epidemic, we need to address the challenges of stigma and gender equity, and to enable dialogue and respect in relationships. While this is not the storyline of Piecing the Puzzle, it is a crucial storyline to preventing AIDS. Nevertheless, Larry Krotz’s book provides useful insights into researchers trying to make a difference with one piece of the AIDS puzzle.