MENTAL, NEUROLOGICAL, AND SUBSTANCE USE DISORDERS IN SUB-SAHARAN AFRICA

Reducing the Treatment Gap, Improving Quality of Care

SUMMARY OF A JOINT WORKSHOP

BY THE INSTITUTE OF MEDICINE AND THE UGANDA NATIONAL ACADEMY OF SCIENCES

Bruce M. Altevogt, Sarah L. Hanson, Zaam Namuli Ssali, and Patricia Cuff, Rapporteurs

Forum on Neuroscience and Nervous System Disorders

Board on Health Sciences Policy

Forum on Health and Nutrition Uganda National Academy of Sciences

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

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Bruce M. Altevogt, Sarah L. Hanson, Zaam Namuli Ssali, and Patricia Cuff, Rapporteurs Forum on Neuroscience and Nervous System Disorders Board on Health Sciences Policy Forum on Health and Nutrition Uganda National Academy of Sciences

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THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, N.W. • Washington, DC 20001 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. It was also approved by the Uganda National Academy of Sciences Executive Council. This project was supported by contracts between the National Academy of Sciences and the Alzheimer’s Association; AstraZeneca Pharmaceuticals, Inc.; CeNeRx Biopharma; the Department of Health and Human Services’ National Institutes of Health (NIH, Contract Nos. N01-OD-4-213, N01-OD-4-2139) through the National Institute on Aging, the National Institute on Alcohol Abuse and Alcoholism, the National Institute on Drug Abuse, the National Eye Institute, the NIH Blueprint for Neuroscience Research, the National Institute of Mental Health, and the National Institute of Neurological Disorders and Stroke; Eli Lilly and Company; GE Healthcare, Inc.; GlaxoSmithKline, Inc.; Johnson & Johnson Pharmaceutical Research and Development, LLC; Merck Research Laboratories; the National Multiple Sclerosis Society; the National Science Foundation (Contract No. OIA- 0753701); the Society for Neuroscience; and Wyeth Research, Inc. The views presented in this publication are those of the editors and attributing authors and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number-13: 978-0-309-14880-1 International Standard Book Number-10: 0-309-14880-4 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2010 by the National Academy of Sciences. All rights reserved. Printed in the United States of America 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. Suggested citation: IOM (Institute of Medicine). 2010. Mental, Neurological, and Substance Use Disorders in Sub-Saharan Africa: Reducing the Treatment Gap, Improving Quality of Care: Summary of a Joint Workshop. Washington, DC: The National Academies Press.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Uganda National Academy of Sciences Website: www.ugandanationalacademy.org E-mail: info@unas.or.ug or unas@infocom.co.ug The Uganda National Academy of Sciences (UNAS) is an autonomous body that brings together a diverse group of scientists from the physical, biological, social, and behavioral sciences to work together in an interdisciplinary and transdisciplinary manner. The main goal of UNAS is to promote excellence in science by offering independent evidence- based advice for the prosperity of Uganda. UNAS was granted a charter to operate as the National Academy of Uganda by H. E. Yoweri Kaguta Museveni, the President of the Republic of Uganda, in January 2009.

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WORKSHOP ON QUALITY OF CARE ISSUES FOR MENTAL HEALTH AND NEUROLOGICAL DISORDERS IN SUB-SAHARAN AFRICA PLANNING COMMITTEE* STEVEN E. HYMAN (Co-chair), Harvard University EDWARD K. KIRUMIRA (Co-chair), Makerere University FLORENCE BAINGANA, Makerere University TIMOTHY COETZEE, National Multiple Sclerosis Society WILSON COMPTON, National Institute on Drug Abuse JUDY ILLES, University of British Columbia ANGELINA KAKOOZA-MWESIGE, Makerere University WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke ALAN I. LESHNER, American Association for the Advancement of Science MICHELLE MCMURRY, Aspen Institute CHARLES NEWTON, KEMRI-Wellcome Research Programme DONALD SILBERBERG, University of Pennsylvania School of Medicine Study Staff BRUCE M. ALTEVOGT, Project Director, IOM PATRICIA CUFF, Project Director, IOM CHRISTIAN ACEMAH, Senior Program Associate, IOM SARAH L. HANSON, Associate Program Officer, IOM (until June 2010) ZAAM NAMULI SSALI, Program Officer, UNAS LORA K. TAYLOR, Senior Project Assistant, IOM ___________________________ ∗ IOM planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii

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INSTITUTE OF MEDICINE FORUM ON NEUROSCIENCE AND NERVOUS SYSTEM DISORDERS* ALAN I. LESHNER (Chair), American Association for the Advancement of Science HUDA AKIL, University of Michigan MARC BARLOW, GE Healthcare, Inc. MARK BEAR, Massachusetts Institute of Technology DANIEL BURCH, CeNeRx Biopharma DENNIS CHOI, Emory University TIMOTHY COETZEE, National Multiple Sclerosis Society DAVID COHEN, Columbia University EMMELINE EDWARDS, NIH Neuroscience Blueprint (since February 2010) RICHARD FRANK, GE Healthcare, Inc. JOHN GRIFFIN, Johns Hopkins University School of Medicine RICHARD HODES, National Institute on Aging KATIE HOOD, Michael J. Fox Foundation for Parkinson’s Research STEVEN E. HYMAN, Harvard University THOMAS INSEL, National Institute of Mental Health STORY LANDIS, National Institute of Neurological Disorders and Stroke HUSSEINI MANJI, Johnson & Johnson Pharmaceutical Research and Development, LLC EVE MARDER, Brandeis University JONATHAN MORENO, University of Pennsylvania School of Medicine MICHAEL OBERDORFER, NIH Neuroscience Blueprint (until January 2010) KATHIE OLSEN, National Science Foundation (until May 2010) ATUL PANDE, GlaxoSmithKline, Inc. MENELAS PANGALOS, Pfizer, Inc. STEVEN PAUL, Eli Lilly and Company WILLIAM POTTER, Merck Research Laboratories ___________________________ * IOM forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. viii

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PAUL SIEVING, National Eye Institute RAE SILVER, Columbia University WILLIAM THIES, Alzheimer’s Association NORA VOLKOW, National Institute on Drug Abuse KENNETH WARREN, National Institute on Alcohol Abuse and Alcoholism FRANK YOCCA, AstraZeneca Pharmaceuticals STEVIN ZORN, Lundbeck USA CHARLES ZORUMSKI, Washington University School of Medicine IOM Staff BRUCE M. ALTEVOGT, Forum Director SARAH L. HANSON, Associate Program Officer (until June 2010) LORA K. TAYLOR, Senior Project Assistant ANDREW POPE, Director, Board on Health Sciences Policy ix

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UGANDA NATIONAL ACADEMY OF SCIENCES FORUM ON HEALTH AND NUTRITION* EDWARD K. KIRUMIRA (Chair), Faculty of Social Sciences, Makerere University THOMAS G. EGWANG, Medi-Biotech Labs, Kampala; Executive Secretary, AAS, Nairobi JOHN TUHE KAKITAHI, Institute of Public Health, College of Health Sciences, Makerere University FIB KAYANJA, Vice Chancellor, Mbarara University of S&T GERALD T. KEUSCH, Director, Global Health Initiative, Boston University JAMES MAKUMBI, Director of Medical Services, Uganda People's Defense Force KEITH MCADAM, Infectious Diseases Institute, Medical School, Makerere University PETER NDIMBIRE MUGYENYI, Executive Director, Joint Clinical Research Centre, Kampala SPECIOSA K. NAIGAGA, Wandira, Concave International, Kampala VINCENT OKETCHO, Country Director, AMREF Uganda LINDA QUICK, Centers for Disease Control, Entebbe, Uganda NELSON SEWANKAMBO, College of Health Sciences, Makerere University Study Staff PAUL NAMPALA, Executive Secretary ZAAM NAMULI SSALI, Forum Director HARRIET NANFUMA, Financial Officer ___________________________ * UNAS forums do not issue, review, or approve individual documents. The responsi- bility for the published workshop summary rests with the workshop rapporteurs and the institution. x

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UGANDA NATIONAL ACADEMY OF SCIENCES COUNCIL* PAUL E. MUGAMBI, President WILLIAM BANAGE, Fellow SAIMO KAHWA, Member A. M. S. KATAHOIRE, Treasurer EDWARD K. KIRUMIRA, Fellow and Chair, Forum on Health and Nutrition HAM-MUKASA MULIRA, Fellow FINA OPIO, Fellow PATRICK R. RUBAIHAYO, Fellow E. N. SABIITI, Vice President Council Staff PAUL NAMPALA, Executive Secretary ZAAM NAMULI SSALI, Program Officer FRANKLIN MUYONJO, Program Officer HARRIET NANFUMA, Financial Officer PATRICK OCHAPET, Office Clerk ___________________________ * The UNAS Council does not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. xi

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Reviewers 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 its pub- lished report as sound as possible and to ensure that the report meets in- stitutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confi- dential to protect the integrity of the process. We wish to thank the fol- lowing individuals for their review of this report: Albert Akpalu, University of Ghana–Medical School Marcelo Cruz, Global Network for Research on Mental and Neurological Health, Ecuador Oye Gureje, University of Ibadan, Nigeria Seggane Musisi, Makerere Medical School, Mulago Hospital, Uganda Although the reviewers listed above have provided many construc- tive comments and suggestions, they did not see the final draft of the re- port before its release. The review of this report was overseen by Richard T. Johnson, Johns Hopkins University School of Medicine. Appointed by the Institute of Medicine, he was 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. xiii

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Preface According to the World Health Organization, disorders of the nervous system—mental, neurological, and substance use disorders— produce substantial disease burden in the developing world. The longstanding focus on infectious disease has obscured their high prevalence and toll on societies, but these disorders, in aggregate, are significant causes of disability in adults and impede human capital formation by their effects on children. Caring for these patients poses a formidable challenge for individuals, families, governments, and societies around the world. Given the existence of cost-effective treatments for many of these disorders, improving both access to care and quality of care could go far to alleviate disease burden. However, resource constraints, disorder stigmatization, shortages of trained personnel, and a lack of understanding of the causes of the disorders limit the amount and quality of care that many individuals receive. Despite the high prevalence and disease burden of these disorders, most countries in sub-Saharan Africa have less than one psychiatrist per million people. The situation is also grim for psychiatric nurses, psychologists, and trained social workers. The total number of neurologists in the region may be even smaller. The formularies are extremely limited, often containing only older medications with a high side-effect burden; even for these drugs, supply chains often break down, making patient adherence to often complicated medication regimens nearly impossible. These and other deficits in treatment systems result not only in needless suffering, but also in chronic disability for patients and limitations on the ability of caregivers to function outside the home. xv

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xvi PREFACE At a national level, these consequences seriously interfere with economic development. Despite research showing the disability and premature mortality resulting from disorders of the nervous system, systematic epidemiological data are lacking in most countries of sub-Saharan Africa. Most experts agree that the scope of unrecognized illness is far greater than the documented cases, and data on children and elderly are particularly sparse. Researchers face further challenges because often patients are hidden from the community out of fear, which makes obtaining accurate data difficult. Without more complete information about the scope of the problem, the countries’ leaders are not addressing the needs of persons with these disorders. The needs include improved access to training for healthcare providers and access to better equipment, more personnel, appropriate medicines, and other needed resources. Improved quality of care for individuals suffering from mental, neurological, and substance use disorders must be a high priority for governments and societies so appropriate investments are made to provide proper care and treatment for these individuals. Addressing the need to advance these important discussions, the U.S. Institute of Medicine’s Forum on Neuroscience and Nervous System Disorders, in collaboration with the Forum on Health and Nutrition of the Uganda National Academy of Sciences, convened an international workshop on quality of care issues for nervous system disorders in sub- Saharan Africa on August 4 and 5, 2009, in Kampala, Uganda. Recognizing both the importance of providing high-quality care for disorders of the nervous system and the resource limitations of most sub- Saharan African countries in diagnosing and treating these disorders, the workshop participants explored strategies to improve care for the countless individuals suffering from nervous system disorders. Other aims of the workshop were to discuss opportunities that can be used to improve continuity of care and sustainability within a country’s healthcare system, and to identify resources that are currently available or could be made available to aid in implementation of treatments and prevention projects. Many key stakeholders attended, including more than 30 speakers, 120 audience members, and representatives from 16 countries. Stakeholders included government policy makers from African countries and the World Health Organization, clinicians, researchers, individuals representing non-governmental organizations, and patient advocates. The workshop represented a true collaboration between the U.S. Institute of Medicine of the National Academies and the Uganda

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PREFACE xvii National Academy of Sciences. Staff from each organization worked closely with an extremely dedicated planning committee that brought together an international cohort with expertise in neuroscience, ethics, pediatrics, drug abuse, international public health, mental health, and neurological disorders. Important and energetic discussions followed well into the evening reception hour, which reinforced a goal of the meeting—to facilitate networking and open discussion between various stakeholders. Some of the major areas of emphasis and recurring themes that were discussed and presented at the workshop include • exploring the need to consider all disorders of the nervous system, including addictive disorders; • sharing the benefit of leveraging skills, expertise, and networks of other health fields (e.g., HIV/AIDS, malaria); • maintaining a focus on treatment and prevention; • improving the available medication formulary for nervous system disorders; • supporting demonstration projects examining o mechanisms to improve availability of medications and care in rural settings and the o role of information technology in improving awareness, training, and treatment, especially in rural settings; • expanding the use of high-quality, community-based care, and the training of community health workers; • collecting further data on effectiveness; and • supporting the need for champions who will relay these, and future, needs and concerns to resource providers. The areas of emphasis suggest the need for more action and investment by all stakeholders, national and international. Real progress in the region will depend on forging partnerships that draw on a broad range of resources and skill sets. Most important is a commitment from stakeholders to make changes and improvements to the current system. The workshop demonstrated that there is great enthusiasm and desire to improve what is currently in place, but partners are needed. This workshop presented a timely and unique opportunity to capitalize on the rich ideas, networks, and momentum that came from participants. Clearly there is a need to improve care for individuals with mental, neurological, and substance use disorders in sub-Saharan Africa, and we hope that this

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xviii PREFACE workshop and summary will help lay the foundation for continued progress. Steven E. Hyman, Co-chair Edward K. Kirumira, Co-chair

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Contents INTRODUCTION 1 About the Workshop and Forums, 3 1 BACKGROUND 5 Establishing a Common Terminology, 5 The MNS Disease Burden, 6 Stigma and Human Rights, 17 2 SYSTEMS OF CARE FOR MNS IN SUB-SAHARAN AFRICA 21 The MNS Treatment Gap, 21 Healthcare System Challenges, 23 Overcoming Healthcare System Challenges, 28 3 MNS HEALTHCARE POLICY 43 Case Study: Uganda Mental Health Policy, 44 Case Study: South Africa, 47 4 NEEDS, OPPORTUNITIES, AND NEXT STEPS 51 Need for Sustainable, Feasible Strategies, 51 Collaboration, 52 Next Steps, 58 xix

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xx CONTENTS APPENDIXES A Putting into Context MNS Disorders in Sub-Saharan Africa 61 B References 67 C Agenda 73 D Registered Attendees 89 E Speaker Biographies 95