Book reviews
de Mallac, M. J. A Fresh Look at Hansen's Disease. New York: Vantage Press, 1992. Hard cover, 161 pp., US$25. Available from Vantage Press, Inc., 516 West 34th Street, New York, New York 10001, U.S.A.
Dr. de Mallac is a physician with many years of experience with leprosy programs in a number of countries in Africa and India. This book reflects that experience, and is an effort to introduce some new thinking into-the field of leprosy with regard to terminology, the stigma, and the impediments to elimination of the disease.
The initial chapters deal with the origins and reasons for the deep-rooted stigma associated with leprosy, including discussions regarding the need for changes in terminology as a means of reducing stigma. The author strongly advocates the use of the term "Hansen's disease" instead of "leprosy," and discusses the arguments for this in considerable detail. He also proposes some unique ideas for new terminology and uses the new terms throughout the book. Some of the terms he suggests are polar multibacillary (PM) for lepromatous (LL) disease, polar paucibacillary (PP) for tuberculoid (TT) disease, borderline paucibacillary (BP) for borderline tuberculoid (BT), and borderline multibacillary (BM) for borderline lepromatous (BL) disease. A leprosy patient is a hansenian, and erythema nodosum leprosum (ENL) is called erythema nodosum hansenicum (ENH). These suggestions, with the arguments for changes in terminology, are probably the most important message of the book.
Several chapters are devoted to discussions of immunology, bacteriology, and pathology. Much of this material is quoted from other sources, is rather brief, somewhat dated, and would be of interest mainly to readers who have little or no prior knowledge of the disease. There are also extensive clinical descriptions of leprosy with many quotations from other authors which are referenced in some detail.
The author rightly places considerable emphasis on the importance of disability caused by leprosy and notes that "the occurrence of disability and/or deformity in a given endemic area might prove a more reliable index of control of the disease than its very incidence."
Dr. de Mallac's ideas are intriguing. The discussions of stigma and terminology are of special note and make the book worthwhile reading for those interested in some rather novel ideas on this subject. -Leo J. Yoder, M.D.
Mehta, J. M., Dandare, M. P. and Jogaikar, D. G. An Epidemiological Review of Pane Urban Leprosy Investigation Centre. Pune, India: Poona District Leprosy Committee, 1992. Softbound, 88 pages, graphs/charts. Available from: Poona District Leprosy Committee, Pune, 35 Manisha, 2A Moledina Road, Pune 411001, India.
Leprosy is a complex subject and more so its epidemiology. The Pune Urban Leprosy Investigation Centre (PULIC) was undertaken with financial support from the German Leprosy Relief Association, with preliminary enumeration of the slum population in 1974 and actual implementation in the year 1975. It was started with the idea of investigating the leprosy problem and endemicity in the city of Pune using initially the well-tried survey, education, treatment (S.E.T.) pattern.
After several years its methodology was modified, laying greater stress on health education, treatment centers, and voluntary reporting which placed the desired responsibility on the patients themselves to come forward for medical attention, health care, and continuation of treatment.
After 17 years of PULIC, which is presently ongoing, it was thought necessary to compile the data in meaningful and readable book form, resulting in the publication of this volume. We have given the data in a meaningful form, culling it from the voluminous records accumulated over the years. With the advent of MDT, considerable changes have taken place as described in the book. - From Preface by Dr. Jal Mehta
Srinivasan, H., ed. Social Sciences Research and Social Action for Better Leprosy Control. Papers and other documents presented at IAL National Workshop at Karigiri, 14-15 March 1991. Madras: Indian Association of Leprologists, 1991. Softbound, 168 pp., some black and white illustrations. Available from: Dr. H. Srinivasan, President, Indian Association of Leprologists, 245 T.T.K. Road, Madras 600018, India.
This book is a record of an attempt made in India to help leprologists and social scientists work together to solve extra-medical problems in Hansen's disease. Sponsored by the Indian Association of Leprologists, this workshop of 30 Indian leprologists and social scientists from different disciplines took place during two days in Mareh of 1991 at Karigiri, India.
While some leprologists think social science Research "a waste of time from a practical viewpoint," Dr. Srinivasan in his introduction felt that cooperation between leprologists and social scientists can and must be established if we are to deal effectively with the leprosy problem in all of its dimensions.
Papers presented included subjects like "Problems of leprosy and leprosy control," "Social sciences and social action for leprosy control," "Self concept and coping with illness," "Patient-health service contact in the context of NLEP," and "Towards developing social action for comprehensive leprosy work in local community systems." The report also includes background information on leprosy, a short introduction to the Research methods and concerns of social scientists and a bibliography on social science Research between 1979 and 1990 taken from three of the main leprosy journals.
Participants at the meeting concluded that many of the problems confronted by the National Leprosy Eradication Program (NLEP) in India are due to the fact that it operates on a "biomedical" perception of leprosy while society and patients have a "biosocial" view of the disease. For these reasons health education, imposed from the top down on passive recipients, has not been successful in changing society's and patients' negative views of leprosy and getting them to cooperate with professional staff in leprosy control programs.
On the other hand, experiences in several Indian districts have shown that when patients and community members are involved by leprosy workers as equal participants in the process of identifying and solving leprosy-related problems, their views of the disease and their level of cooperation with the program change for the better.
Because of this positive experience in "social action," the participants in the meeting urged that NLEP staff be trained to promote such community and patient involvement elsewhere in order to eradicate fear and a sense of despair, and to encourage voluntary reporting, prevention of deformities, rehabilitation and integration. Likewise, social scientists were encouraged to become involved in more practical "action research-action" schemes. Together with medical scientists, they would jointly define problems, design Research programs and carry them out as partners.
This report on the workshop is a timely one and helps to bring to the forefront a number of issues which are being thought about and acted on in many parts of the world. One, that leprosy is the cause of at least as many psycho-social problems as physical ones. Two, these nonmedical problems are often more important to patients and to members of their communities than their medical problems and certainly affect the success or failure of medical treatment. Three, in order to solve these nonmedical problems in a systematic way, we need the input, cooperation and leadership of others outside the medical field who are affected by or have experience in dealing with the problems we are facing. These are not only the wide array of persons covered by the term "social scientists" but also patients, family members, leaders of medical and socioeconomic institutions whose support we need to solve our problems.
Perhaps the time has come to put as much effort into planning and implanting practical, efficient and effective programs on the social side of Hansen's disease as on the medical side. The Indian workshop is certainly a sign that concern is growing that we need to do much more than we are now doing. It also provides some practical proposals for action. - Thomas F. Frist