Previous books about haemophilia (or haemophiliacs) have focused on the dramatic fate of haemophiliac patients contaminated by AIDS at the beginning of the 1980s. For example, Blood Saga published by the anthropologist Susan Resnik at the end of the 1990s explored the story of mobilization of patients’ associations around questions of treatment access and safety, the way young men were emancipated from parents and physicians, and lastly the consequences of AIDS. In The Bleeding Disease, Pemberton describes haemophilia and how the story of this disease has changed the conception of chronic diseases in contemporary America. Pemberton is interested in the relationships between physicians, medical knowledge, patients and their expectancies, and follows the very fertile approaches initiated by Chris Feudtner in his study of infantile diabetes, focusing on the relationships between patients, their disease and their whole environment. Such analyses offer a social and medical history of the disease, which is very stimulating for the reader and mainly social scientists.
Pemberton began his study of blood disease in the 1990s, after he met Kenneth Brinkhous; he then analysed the experimental laboratory with historical and anthropological tools. He not only provides a history of haemophilia, but also focuses on the way the disease was explained by physicians, the work of scientists, the different hypotheses about the origins of haemophilia and the way it influenced therapeutic issues, and patients’ expectations and behaviour. These different approaches help one understand how haemophilia was changed into a ‘manageable’ disease.
The first chapter analyses how the concept of haemophilia was developed. As the disease was considered early on to be a hereditary disease, it influenced the science of hereditary as it developed in the second part of the nineteenth century. However, the concept of haemophilia also changed the social and cultural experiences of race and gender, as haemophilia was mainly perceived as a disease of white men in the first part of the twentieth century. The second chapter focuses on the medical research on haemophilia: the laboratory work that was central to the understanding of the disease and which was able to characterise it as a treatable blood disease. Pemberton describes the emergence of the ‘science of clotting’, which is exemplary of the first steps of a standardisation of the work in the laboratories. He also recalls the most general context of innovations in blood transfusion. He gives us several portraits of physicians and scientists such as Brinkhous, of course, but also Addis and Lewisohn, and some patients who played their part in haemophilia research. The third chapter explores the transformation of haemophilia into a treatable disease in relation to its definition as a sex-related disease (and particularly as a male disease). Pemberton stresses here all the obstacles against the recognition of cases of female haemophilia. He offers a very engaging portrait of Carroll Birch, who was one of the first American physicians (and a female one) to specialise in the problem of haemophilia and receive international recognition. At the same time, since haemophilia was understood as a clotting disease (as opposed to simply a blood disease), hematologists began to refer to themselves as ‘coagulationists’ or ‘clotters’. Patients and their families also begin to look to hematologists with the hope of a treatment, as the discovery of the deficiency of clotting factors was widely publicised.
Chapter four analyses how ‘normality’ or ‘normalcy’ became the aim of haemophilia management in the 1950s and the 1960s. During these years, patients and their families formed haemophilia communities reliant on models of patient associations in which physicians were especially influential. Such a transformation was possible with the availability of safe and reliable transfusion services offering blood products to haemophiliacs. Chapter five describes the turning point in the treatment of haemophilia provoked by the introduction of factor VIII concentrates at the end of the 1960s. The concentrates offered patients the autonomy and a ‘passport to freedom’. This new therapeutic issue improved the management of blood transfusion in the US. At the same time, as patients grew up and began to speak for themselves instead of through their parents and families, these young boys experienced themselves to be ‘normal’ in a different way. In chapter seven, Pemberton focuses on the economic aspects of the consumption of expensive concentrated factors: in the process, the National Haemophilia Foundation (NHF) became to be seen more and more as a consumer association and haemophiliacs became understood as health consumers. While NHF struggled for a national blood policy and obtained from the US Food and Drug Administration a labelling of blood donors, the plasma industry refused this labelling policy and argued that it would prevent the production of clotting factors. Finally, in chapter seven, Pemberton exposes how the AIDS catastrophe revealed the limits to what biomedicine can do to deliver health. He shows that the haemophilis/AIDS tragedy must be analysed in a long-term perspective: considering patients’ aspirations to normalcy, and the belief that the management of the disease may offer a normal life.
Relying on a wide variety of sources (medical press, testimonies, etc.), The Bleeding Disease makes an important contribution to the history of American biomedicine in the twentieth century. It offers a stimulating analysis of the change of haemophilia into a manageable disease, taking into consideration the social and cultural dimensions of the disease. It gives us a new focus on the AIDS transfusion epidemic as an example of the limits of biomedicine. Lastly, this book encourages historians of biomedicine and broadly social scientists to consider the contrasts and ambiguities of the progress in biomedicine.
