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NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.
Support for this project was provided by Centers for Disease Control and Prevention, Global Forum for Health Research, National Institute for Child Health and Human Development, National Institute for Mental Health, National Institute for Neurological Disorders and Stroke, and the Fogarty International Center of the National Institutes of Health. The views presented in this report are those of the Institute of Medicine Committee on Nervous System Disorders in Developing Countries and are not necessarily those of the funding agencies.
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Cover: Mbangu mask, Central Pende, Bandundu, Zaire, registered in 1959. One of the great masterworks of Pende art in Western collections, this Mbangu mask represents the bewitched him. It dances to the song, “We look on (unable to help), the sorcerers have bewitched him.” The masker wears a humpback from which an arrow extends. The arrow refers to the popular image of sorcerers “shooting” their prey with invisible arrows when they cast their spell. The metaphor communicates the perception of sudden onslaught in illness or misfortune, just as we might say, “It came out of the blue.”
Mbangu is “bewitched”; however, since the Pende worldview attributes almost all illness and personal misfortune to the malice of others, what is really at issue is chronic illness or disability and our response to it. If he does not carry a bow and arrows, the dancer usually avails himself of a cane to indicate his physical weakness. The black-and-white division of his face refers to the scars of someone who fell into the fire due to epilepsy or some other medical condition. This sculptor has also depicted traces of smallpox on the black eyelid, and the face is pulled down on one side due to a paralysis of the facial nerve. Sculptor and performer collaborate to make Mbangu a composite sign of illness and disability, of all the misfortunes that can befall someone.
What then is to be our response to Mbangu? Some sculptors render the mask comedic, but this work conveys an extraordinary delicacy and sympathy by contrasting the gentle perfection of the features on one side with the systematic distortion on the other. This sculptor responds to the widespread version of Mbangu's song: “Do not mock your neighbor, do not laugh at your brother, the sorcerers have bewitched him.” In other words, anyone can fall prey to misfortune; it could happen to you. Our brother, our neighbor, deserves our support.
Permission to use this image was kindly granted by the Royal Museum of Central Africa. ©AFRICA-MUSEUM TERVUREN(BELGIUM)
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
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COMMITTEE ON NERVOUS SYSTEM DISORDERS IN DEVELOPING COUNTRIES
ASSEN JABLENSKY (Co-chair), Professor,
Department of Psychiatry, University of Western Australia, Perth
RICHARD JOHNSON (Co-chair), Professor,
Department of Neurology,
Co-Chair of Department of Microbiology and Neurosciences,
John Hopkins University School of Medicine, Baltimore, Maryland
WILLIAM BUNNEY, JR., Professor and Della Martin Chair,
Department of Psychiatry and Human Behavior, University of California at Irvine
MARCELO CRUZ, Professor,
Neurosciences Institute, Central University of Ecuador, Quito
MAUREEN DURKIN, Professor,
Sergievsky Center, Joseph L. Mailman School of Public Health, Columbia University, New York, New York
JULIUS FAMILUSI, Professor,
Department of Pediatrics, University College Hospital, Ibadan, Nigeria
M. GOURIE-DEVI, Director-Vice Chancellor, and Professor of Neurology,
National Institute of Mental Health and Neurosciences, Bangalore, India
DEAN JAMISON, (Board on Global Health Liaison), Director,
Program on International Health, Education, and Environment, University of California at Los Angeles
RACHEL JENKINS, Director,
World Health Organization Collaborating Centre, Institute of Psychiatry, London, United Kingdom
SYLVIA KAAYA, Professor,
Department of Psychiatry, Muhimbili University College of Health Science, Dar es Salaam, Tanzania
ARTHUR KLEINMAN, Presley Professor of Anthropology and Psychiatry,
Departments of Anthropology and Social Medicine, Harvard University, Boston, Massachusetts
THOMAS MCGUIRE, Professor,
Department of Economics, Boston University, Massachusetts
R. SRINIVASA MURTHY, Dean, and Professor of Psychiatry,
National Institute of Mental Health and Neurosciences, Bangalore, India
DONALD SILBERBERG, Professor of Neurology, Director of International Medical Programs,
University of Pennsylvania School of Medicine, Philadelphia
BEDIRHAN ÜSTÜN, Group Leader of Assessment, Classification, and Epidemiology Group,
World Health Organization, Geneva, Switzerland
STACEY KNOBLER, Study Director (from February 2000 to May 2001)
JUDITH BALE, Director, Board on Global Health and Study Director
PAMELA MANGU, Study Director (from September 1999 to February 2000)
CHRISTINE COUSSENS, Research Associate
ALISON MACK, Consultant Writer
LAURIE SPINELLI, Project Assistant
The National Academies Christine Mirzayan Internship Program
The National Academies Christine Mirzayan Internship Program
BOARD ON GLOBAL HEALTH
DEAN JAMISON, (Chair), Director,
Program on International Health, Education, and Environment, University of California at Los Angeles
YVES BERGEVIN, Senior Health Specialist,
Canadian International Development Agency
HARVEY FINEBERG, Provost,
Harvard University, Boston, Massachusetts
EILEEN KENNEDY, Deputy Under Secretary for Research, Education, and Economics,
U. S. Department of Agriculture, Washington, D.C.
ARTHUR KLEINMAN, Presley Professor of Medical Anthropology and Psychiatry,
Harvard Medical School, Boston, Massachusetts
PATRICIA DANZON, Professor of Health Care Systems Development,
Wharton School, University of Pennsylvania, Philadelphia
NOREEN GOLDMAN, Professor,
Woodrow Wilson School of Public and International Affairs, Princeton University, Princeton, New Jersey
ALLAN ROSENFIELD, Dean,
Mailman School of Public Health, Columbia University, New York, New York
ADEL MAHMOUD, President,
Merck Vaccines, Whitehouse Station, New Jersey
SUSAN SCRIMSHAW, Dean,
School of Public Health, University of Illinois at Chicago
JOHN WYN OWEN, Secretary,
Nuffield Trust, London, United Kingdom
GERALD KEUSCH, (Liaison), Director,
Fogarty International Center, National Institutes of Health, Bethesda, Maryland
DAVID CHALLONER, (IOM Foreign Secretary), Vice President for Health Affairs,
University of Florida, Gainesville
JUDITH BALE, Director
JONATHAN DAVIS, Study Director
STACEY KNOBLER, Study Director
KATHERINE OBERHOLTZER, Project Assistant
LAURIE SPINELLI, Project Assistant
This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and the draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:
Naomar Almeida-Filho, Campus Universitario-Canela, Salvador-Bahia, Brazil
Nancy Andreasen, University of Iowa Hospitals and Clinics, Iowa City
Gretchen Birbeck, Michigan State University, East Lansing
Daniel Chisholm, World Health Organization, Geneva, Switzerland
Sir David Goldberg, King's College, United Kingdom, London
Nora Groce, Yale University, New Haven, Connecticut
Vladimir Hachinski, University of Western Ontario, Canada
William Harlan, National Institutes of Health, Bethesda, Maryland
Guy Mckhann, John Hopkins University School of Medicine, Baltimore, Maryland
Alberto Minoletti, Ministry of Health, Santiago, Chile
Malik Mubbashar, WHO Collaborating Centre for Research Training in Mental Health, Rawalpindi, Pakistan
Elena Nightingale, Institute of Medicine, Washington, D.C.
Nimal Senanayake, University of Peradeniya, Sri Lanka
Rune Simeonsson, University of North Carolina, Chapel Hill
R. Thara, Schizophrenia Research Foundation, Chennai, India
Myrna Weissman, Columbia University College of Physicians and Surgeons, New York
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Arthur Asbury, University of Pennsylvania School of Medicine, Philadelphia, and Floyd Bloom, The Scripps Research Institute, La Jolla, California, who were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
The continuing existence of gross disparities in health between affluent and poorer countries is becoming a major challenge for policy makers in the new millennium. While the link between poverty and disease is well established and has been recognized by public health leaders and social reformers for a century and a half, the complexity of this relationship has become apparent only in the last several decades as national governments and international organizations have accorded health increasing priority in development programs. It is now widely accepted that socioeconomic development and population health must advance together to be sustainable in the long term. Improvements in population health are not merely or even necessarily a by-product of economic growth. They are a prerequisite and a driving force of economic and social productivity. Reductions in maternal and infant mortality, improvements in nutrition and environmental sanitation, and control of communicable diseases have made important contributions to economic growth. Conversely, high levels of preventable morbidity and mortality, survival with chronic disability, reduced quality of life, and widespread demoralization are a drain on society's resources and impede overall development.
For several decades, investments in health in the context of national and international development strategies have targeted primarily the major communicable diseases, malnutrition, and poor sanitation in low-income countries. A number of such programs have successfully lowered infant mortality rates and, as a result, increased life expectancy at birth. However, the net effect of such gains has been largely offset by the epidemiological transition from a
morbidity and mortality pattern dominated by acute and often fatal communicable diseases to one characterized by a rapid rise in chronic and potentially disabling diseases such as cardiovascular disorders, diabetes, and neoplasms. As a consequence, middle- and low-income countries are increasingly facing an epidemic of chronic diseases along with the unfinished agenda of infectious disease and malnutrition.
This complex epidemiological situation is further complicated by the widespread incidence of neurological, psychiatric, and developmental disorders, all involving a congenital or acquired brain dysfunction and affecting the behavior and quality of life of some 250 million people in the developing world. Their global importance was highlighted in the Global Burden of Disease study published in 1996 by the World Health Organization (WHO), the World Bank, and the Harvard School of Public Health. Although brain disorders account for only 12 percent of all deaths in these estimates, they are responsible for at least 27 percent of all years of life lived with disability, and this combined share of the total global burden of disease was estimated at nearly 15 percent in 1990 and projected to rise significantly by 2020. Negative attitudes, prejudice, and stigma are associated with many of the neurological, psychiatric, and developmental conditions. As a result, the majority of people affected by these disorders in developing countries remain virtually untreated, while for many others the conditions remain undiagnosed. Since many of these disorders run a continuous or recurrent course that is often lifelong, they profoundly affect an individual's capacity to relate to others and perform culturally expected roles, and result in significant distress and dysfunction among family members and the community. Therefore, their socioeconomic impact is likely to be greater than their prevalence would suggest.
Despite negative attitudes, prejudice, and neglect, many brain disorders can be successfully addressed: some can be prevented from occurring, and all the disabling sequelae of others can be mitigated. Treatment, prevention, and reduction of disability for this group of disorders could therefore have a major impact on the total burden of disease and disability in developing countries.
Indeed, the timeliness of initiatives to raise global public awareness of brain disorders in developing countries is underscored by major advances in scientific understanding of the neurobiology of brain development and function, epitomized by the Decade of the Brain, 1990–2000. Echoing the farsighted aphorism of one of the founders of modern psychiatry that “mental diseases are brain diseases” (Griesinger, 1845), current neuroscience research now recognizes mental disorders as arising from brain dysfunctions that interact with environmental triggers at different stages of neurodevelopment. The mapping and cloning of specific genes that contribute to vulnerability to psychiatric disorders will be greatly accelerated by the complete sequencing of the human genome and by powerful new technologies for gene tracking and functional
analysis. Such knowledge will inevitably provide new insights into the pathophysiology of these disorders and lead to novel treatments. Similarly, the diagnosis and treatment of many neurological disorders are likely to be revolutionized as a result of advances in molecular neuroscience. An increasing number of such disorders may become preventable in the not-too-distant future.
It is important at the same time to recognize that, regardless of the promise of future developments, many of the brain disorders accounting for a major share of the burden of disease and disability in the developing world can be treated effectively with means that are currently available and, in principle, affordable. To highlight these opportunities and the prerequisites for implementing appropriate interventions, was the principal task of the Committee on Nervous System Disorders in Developing Countries, convened by the U.S. Institute of Medicine.
This study was sponsored and supported by the U.S. Centers for Disease Control and Prevention, the Fogarty International Center of the National Institutes of Health, the Global Forum for Health Research, the National Institute of Child Health and Human Development, the National Institute of Mental Health, and the National Institute of Neurological Disease and Stroke.
The charge to the committee was first to address the broad burden of neurological, psychiatric, and developmental disorders and then to focus on six groups of conditions: developmental disabilities affecting the central nervous system in early life, epilepsy, unipolar depression, bipolar disorder, schizophrenia, and stroke. These conditions share the following characteristics:
often subject to stigma and neglect; and
amenable to interventions that are effective and relatively low cost.
The specific focus on six groups of disorders does not imply future exclusion from consideration of other conditions that meet the same criteria, fully or in part. Peripheral neuropathies, alcohol and drug dependence, dementia, and disorders resulting from trauma and interpersonal violence are examples of conditions that merit commensurate attention and it is hoped that they will be the subject of future studies.
The membership of the committee reflects both the multidisciplinary nature of the problems to be addressed and the need for first-hand familiarity with and expertise in their socioeconomic and cultural context in various regions of the world. Thus, the committee comprised 15 members with expertise in fields as diverse as clinical neurology and psychiatry, developmental neuroscience, epidemiology, cultural anthropology, and health economics. In addition, the committee had the benefit of access to consultants and advisers with expertise in primary health care, health statistics, and public policy. A complete list of contributors is included in Appendix A. Invaluable technical and administrative
support throughout the study, including compilation of an extensive bibliography, literature research, technical writing, and editing, was provided by the staff of the Institute of Medicine. We thank each of these individuals and organizations for their assistance and support over the course of this study.
Assen Jablensky, M.D. Richard Johnson, M.D.
The breadth and scope of the issues considered within this report are extensive. The committee is grateful for the many individuals who contributed their time and expertise toward the committee's understanding of these complex issues and the development of the report. Particular thanks are in order to the authors of the background papers, whose efforts provided important information bearing on the topic of this report and the development of draft chapters: Eduardo Castilla, Eclamc/Genetica, Fiocruz, Brazil; Oyewusi Gureje, University College Hospital, Nigeria; Nalia Khan, Bangladesh Institute of Child Health; Kwame McKenzie, Institute of Psychiatry, University College, London; Vikram Patel, London School of Tropical Hygiene and Sangath Centre, Goa, India; Gregory Powell, University of Zimbabwe; and Marigold (Molly) Thorburn, 3D Projects of Jamaica and the Jamaica Coalition on Disabilities.
The committee thanks Marcelo Cruz, Maureen Durkin, Assen Jablensky, Rachel Jenkins, Tom McGuire, and Donald Silberberg for their chapter drafts; and William Bunney, Julius Familusi, M. Gourie-Devi, Dean Jamison, Dick Johnson, Sylvia Kaaya, Arthur Kleinman, Srinivasa Murthy, and Bedirhan Üstün for their substantive contributions to the committee deliberations and draft chapter reviews.
Special thanks is expressed to the following workshop participants for advising and informing the committee's efforts: Alex Cohen, Harvard Medical School; Beugre Kouassi, University of Abidjan-Cocody, Ivory Coast; Thomas Langfitt, University of Pennsylvania; Jessie Mbwambo, Muhimbili University College of Health Science, Tanzania; Norman Sartorius, University of Geneva,
Switzerland; Peter Schantz, Centers for Disease Control and Prevention; and Harvey Whiteford, the World Bank.
The committee is particularly grateful for those who provided technical review of and substantive contributions to draft chapters: Gretchen Birbeck of Michigan State University, East Lansing; Jose Biller of Indiana University School of Medicine; Ellis D'Arrigo Busnello of the Universidade Federal do Rio Grande do Sul, Brazil; Robert Edgerton and Jerome Engel of University of California, Los Angeles; Joop T. V. M. de Jong of the Transcultural Psychosocial Organisation, Amsterdam; Matthew Menken of the World Federation of Neurology Research Group on Medical Education; Pierre-Marie Preux and Michel Dumas of the Institut de Neurologic Tropicale, Limoges, France; Leonid Prilipko of the Department of Mental Health and Substance Dependence, World Health Organization; Niphon Poungvarin of Mahidol University, Thailand; Ralph Sacco of Columbia University; Josemir W. A. S. Sander and Robert Scott of the Institute of Neurology, University College, London; and Rune Simeonsson of the University of North Carolina, Chapel Hill.
The committee gratefully acknowledges those who provided data, information, and guidance critical to the committee's deliberations: Gallo Diop of the Centre Hospitalier Universitaire De Fam, Dakar, Senegal; Ronald Kessler of Harvard Medical School; Robert Kohn of Brown University; Itzhak Levav, Charles Godue, and Felix Rigoli of the Pan American Health Organization; Beverly Long of the World Federation for Mental Health; Ronald Manderscheid of the Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services; Benedetto Saraceno of the World Health Organization; Hisao Sato of the Japan College of Social Work; Koon Sik Min of the Sam Yook Rehabilitation Center, Korea; B.S. Singhal of the Bombay Hospital Institute of Medical Sciences, India; James Toole of the Wake Forest University School of Medicine and the World Federation of Neurology; and the African Medical and Research Foundation.
Finally, and in particular, the committee would like to express its deep appreciation of the Institute of Medicine (IOM) staff who facilitated the work of this committee. We especially thank Judith Bale, Stacey Knobler, and Alison Mack for translating and transforming the discussions and draft chapters of the committee and technical review comments into final prose; Laurie Spinelli for her tireless efforts in research verification and preparation of the manuscript for publication; and Christine Coussens, Stephanie Baxter-Parrott, Kevin Crosby, Carla Hanash, Amber Johnson, Witney McKiernan, Katherine Oberholtzer, and Tara Rao for their valuable research and logistical support of the committee's efforts. The committee is grateful for the contributions of Pamela Mangu during the initial stages of the project. Others within the IOM and the National Academies who were instrumental in seeing the project to completion were Paige Baldwin, Clyde Behney, Andrea Cohen, Mike Edington, Janice Mehler,
Jennifer Otten, Sarah Schlosser, and Curt Taylor. Thanks are also due to editorial consultants Rona Briere, Phillip Sawicki, and Beth Gyorgy.
This project was funded by the Centers for Disease Control and Prevention (CDC), Global Forum for Health Research (GFHR), Fogarty International Center of the National Institutes of Health (FIC), National Institute of Child Health and Human Development (NICHD), National Institute of Mental Health (NIMH), and the National Institute of Neurological Disorders and Stroke (NINDS). The committee is appreciative of their support and of the commitment and productive efforts of Duane Alexander (NICHD), Coleen Boyle (CDC), Robert Eiss (FIC), Gerald Fischbach (NINDS), Walter Gulbinat (GFHR), Gray Handley (NICHD), Steven Hyman (NIMH), Gerald Keusch (FIC), Grayson Norquist (NIMH), Mary Lou Oster-Granite (NICHD), Darrel Regier (NIMH), Joana Rosario (NINDS), and Agnes Rupp (NIMH).