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WHO Global Campaign against Epilepsy: Bringing Epilepsy “Out of the Shadows”
Epilepsy & Behavior 1, S3–S8 (2000) doi:10.1006/ebeh.2000.0104, available online at http://www.idealibrary.com on
The ILAE/IBE/WHO 1 Global Campaign against Epilepsy: Bringing Epilepsy “Out of the Shadows” Edward H. Reynolds, M.D., FRCP, FRCPsych Epilepsy affects at least 100 million people worldwide at some time in their lives, especially in childhood and adolescence. It is a universal problem involving all ages, races, social classes, and nations. Nevertheless, it has been misunderstood, feared, and stigmatized for more than 3000 years. The psychosocial and economic consequences of epilepsy are considerable in developed nations but are even greater in developing nations, where the treatment gap may vary from 60 to 98%. To address the long-standing worldwide neglect of this disease, a campaign titled Epilepsy: Out of the Shadows has been launched by an alliance of three global organizations: the International League against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), and the World Health Organization (WHO). Global, regional, and national initiatives are currently underway. © 2000 Academic Press Key Words: epilepsy; global campaign; burden; stigma; treatment gap; World Health Organization; International League against Epilepsy; International Bureau for Epilepsy; “Out of the Shadows.”
INTRODUCTION
largely because of negative public attitudes and political neglect of a hidden, misunderstood, and stigmatized disorder (5, 7). A major global initiative (8) to address epilepsy as a universal disorder has been launched by an alliance of three global organizations: the International League against Epilepsy (ILAE), the professional body of which the American Epilepsy Society (AES) is a chapter; the International Bureau for Epilepsy (IBE), the lay organization of which the Epilepsy Foundation is a chapter; and the World Health Organization (WHO). The combination of these three organizations is a powerful one, and it is the first such collaboration of its kind in the field of neuroscience. The ILAE, IBE, and WHO jointly launched the initiative Epilepsy: Out of the Shadows in the summer of 1997, simultaneously from Geneva, Switzerland, and Dublin, Ireland, during the International Epilepsy Congress (8). The campaign is gradually gathering momentum at global, regional, and national levels.
Epilepsy has been recognized since the earliest medical writings in Babylon more than 3000 years ago (1). The term epilepsy is derived from the Greek word epilepsia, meaning to “take hold of” or “to seize.” In ancient times, it was believed that those affected were being seized or possessed by gods or evil spirits. Hippocrates’ view that “the sacred disease” was not sacred but a disease of the brain was largely ignored until the late 19th century (2).
EPILEPSY: A GLOBAL INITIATIVE FOR A UNIVERSAL DISORDER Epilepsy is the single most common serious brain disorder in every country of the world. It may be the most universal of all medical disorders, affecting all ages, races, social classes, and nations (3–5). In the last century, considerable progress has been made in our understanding of the nature and treatment of epilepsy (6). Regrettably, however, much of this knowledge has not been applied in the developed world, and even less so in the developing world,
WHY A GLOBAL INITIATIVE AGAINST EPILEPSY? The scale of the problem of epilepsy throughout the world is sufficient to suggest the need for an effort of this magnitude; the personal, family, social, and economic consequences of epilepsy compel it further.
1
ILAE, International League against Epilepsy; IBE, International Bureau for Epilepsy; WHO, World Health Organization. 1525-5050/00 $35.00 Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
S3
S4 Worldwide, at least 40 million people, or 7 of every 1000 individuals, currently suffer from epilepsy (3, 4). Over the course of a lifetime, more than 100 million people will have epilepsy. The lifetime risk of experiencing a single seizure is 5%. The annual incidence of epilepsy in developed countries is high, at 50 per 100,000 of the general population, but it is at least doubled in developing countries, where younger overall populations and higher rates of certain predisposing factors, such as acute communicable diseases and perinatal trauma, combine to raise the risk (4, 5). Global Neglect The social stigma surrounding epilepsy contributes to the neglect of this disease by governments, departments of health, and the general public (5, 7). This is not confined to the developing world. In Europe, for example, unemployment rates among individuals with epilepsy are two to three times higher than those in the general population, due primarily to ignorance on the part of employers (9). In the United Kingdom, where the Charities Aid Foundation releases an annual report detailing the amount of money raised for medical charities, £290 million sterling was raised for cancer in 1998, and more than £9 million was raised for leprosy. By contrast, £1.2 million was raised for epilepsy (10). This is in spite of the fact that there are more than 400,000 individuals with epilepsy in the United Kingdom and no new cases of leprosy. This astonishing statistic reflects public ignorance, prejudice, and lack of awareness of epilepsy and its burden, which is no longer the case, as it used to be, for cancer and leprosy. Global Disease Burden Until recently, WHO has focused most of its efforts on disorders with a high mortality rate, particularly communicable diseases. Since the reorganization of WHO in 1998, however, greater emphasis is being placed on diseases that cause prolonged disability without necessarily being accompanied by high mortality. One measure of the global burden of disease is the disability-adjusted life year (DALY) recently adopted by WHO as a method for quantifying the impact of disability-associated diseases such as epilepsy. The DALY is an indicator of the time lived with a disability and the time lost due to premature mortality. It has been used in public health studies conducted by WHO, the World Bank, and the Harvard Medical School to measure the combined impact of the Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
Edward H. Reynolds TABLE 1 Disability-Adjusted Life Years (DALYs) Associated with Epilepsy a DALYs Epilepsy total 5–9 years of age 10–14 years of age 15–19 years of age a
1% 1% 1.6% 0.7%
Reference (11).
disability that occurs with chronic illness due to loss of productivity and earnings and the reduced life span that may also accompany such illnesses (11). This is a potentially important measure of disease burden because some conditions, including neuropsychiatric disease, that appear to have a relatively small economic impact when only mortality is considered, are revealed as a heavy burden when DALYs are calculated. Indeed, using DALY measurements, it has been estimated that 34% of the global burden of disease is due to disability. Neuropsychiatric disorders amount to approximately 15% of the global disease burden (11). Epilepsy accounts for approximately 1% of the total disease burden and is fourth on the list of neuropsychiatric disorders, following depression, alcoholism, and cerebrovascular disease, and similar to the burden of breast and lung cancer. The DALYs associated with epilepsy vary with age, with the greatest toll in children between the ages of 10 and 14 years (Table 1). DALY calculations for epilepsy are likely to be underestimated, because data from epidemiologic studies in developing countries are confined mainly to convulsive forms of epilepsy and may exclude the more difficult-to-diagnose nonconvulsive forms of seizure disorder. Furthermore, the mortality of epilepsy is also often underestimated. Nevertheless, the increasing attention being focused on DALY calculations should raise awareness of the scale of the socioeconomic burden of epilepsy.
CLOSING THE EPILEPSY TREATMENT GAP: A KEY GOAL OF THE GLOBAL CAMPAIGN Underestimation of the socioeconomic impact of epilepsy and the stigmas that surround the disease contribute to an immense treatment gap in developing countries. At a recent commission meeting of the ILAE
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Global Campaign Against Epilepsy TABLE 2 The Treatment Gap in Developing Countries, 1988 –1996 a Country
Treatment gap
Ecuador Ethiopia Guatemala India Pakistan Rural Urban Philippines Sudan
88% 98% 69% 75% 94% 98% 73% 85% 60%
a
Reference (12).
in North Africa, consensus was reached on the following definition of the treatment gap: “The treatment gap is the difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point in time, expressed as a percentage” (12). Studies conducted between 1988 and 1996 in various developing countries revealed that the treatment gap is, in general, more of a gulf than a gap; it varies between 60% at its lowest point, in Sudan, and 98% in rural Pakistan and Ethiopia (Table 2). Understandably, the treatment gap is invariably greater in rural communities than in urban areas. In rural Pakistan, for example, the treatment gap is 98%, while in urban Pakistan, it is 73% (12). The treatment gap exists in developed countries on a somewhat smaller scale of between 10 and 40%. In certain parts of Eastern Europe, for example, the treatment gap may be between 30 and 40%. The treatment gap in the developing world is illustrated by the global financial market for antiepileptic drugs (AEDs). Currently available data show that 82% of the global financial market for AEDs is concentrated on approximately 15% of the world’s population with epilepsy: 51% in North America, 22% in Western Europe, and 9% in Japan (D. Milton, oral communication, 1997). By contrast, approximately 85% of the people in the world represent 18% of the financial market, with 7% in Latin America, 5% in the Asian Pacific regions, and 6% in the rest of the world. Reasons for the Treatment Gap Studies in both the developed and the developing world demonstrate that epilepsy can be successfully controlled with AEDs in approximately 70% of pa-
tients (3, 5). Yet about three-quarters of individuals with epilepsy throughout the world are not receiving adequate treatment. What are the reasons for this rather scandalous situation? The causes of the treatment gap are complex. An important factor in most developing countries is the poor healthcare delivery infrastructure, including staff, resources, and services, especially in the field of neurological disorders (12). In sub-Saharan Africa, for example, there is one neurologist for every 10 million people. Adding to these problems are difficulties in transportation, compounded by vast distances between sources of medical care and patients. Experience in minimally served areas of developed countries has demonstrated that efforts to increase the provision of healthcare to underserved populations are generally more successful when the healthcare source goes to the patient rather than the other way around. A second cause of the treatment gap is the low priority that so many governments place on epilepsy (8, 12). This is quite frequent in the developed world, and it is almost always the case in developing countries, where the magnitude of high-mortality medical problems, especially communicable diseases, tends to overshadow other diseases. A third reason for the treatment gap is the lack of sustainability of medical treatment in the developing world (12). This is, in part, a cultural issue, in that many individuals in developing countries have no concept of the need to continue medical treatment on a long-term basis for certain conditions; instead, they will seek and adhere to only short-term “cures” for acute conditions. This health-seeking behavior has deep social and cultural roots that can be overcome only with major educational initiatives. Lastly, the treatment gap is related to issues of drug cost, delivery, and availability in developing nations (12). Although this is a major issue, it is far from being the most important one. Experience in developing nations with other major public health problems, particularly communicable diseases, has amply demonstrated that simply delivering drugs to developing countries will not necessarily narrow the treatment gap.
ANATOMY OF A GLOBAL CAMPAIGN: THE MISSION AND THE METHODS The mission of the ILAE/IBE/WHO Global Campaign against Epilepsy is to improve the acceptability, treatment, services, and prevention of epilepsy worldCopyright © 2000 by Academic Press All rights of reproduction in any form reserved.
S6 wide (8). The campaign is aimed primarily at developing countries. However, when it comes to epilepsy, as the previous discussion has illustrated, every country is a developing country. The objectives of the campaign are as follows: • to increase public and professional awareness of epilepsy as a universal, treatable brain disorder; • to raise epilepsy to a new plane of acceptability in the public domain; • to promote public and professional education about epilepsy; • to identify the needs of people with epilepsy on a national and regional basis; • to encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services, and prevention. The campaign has a political dimension; politicians are in the position to most effectively address the problems associated with epilepsy. It is for this reason that the involvement of WHO is so important. The initiative involves interrelated activities on three levels: global, regional, and national.
Global Programs At the global level, the initiative is seeking (1) to persuade the WHO General Assembly to recognize epilepsy as an international health priority and to designate a global epilepsy awareness day and (2) to educate governments and departments of health about the needs and neglect of people with epilepsy. The General Assembly of the World Health Organization is the highest decision-making body of that organization, and it is composed of individual delegates— often the minister of health or a close associate— of all of the world’s countries. Further, WHO does not respond primarily to nongovernmental organizations like the ILAE or the IBE, but to the wishes of national governments as reflected by their delegates. Thus, the ILAE and the IBE will work through their national chapters with the national delegates to influence them in turn to persuade WHO that epilepsy is a critical issue. For this and other reasons, it is the national activities under the global campaign that will ultimately be most important. The campaign has already achieved a major success. In December 1999, the Director-General and Cabinet of the newly reorganized WHO endorsed the campaign, raising it to a new high-level cabinet priority Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
Edward H. Reynolds
within the organization, thus paving the way for a major boost to the campaign from 2000 through 2005. Regional Programs WHO has six regional offices, serving North and South America (the Pan-American Health Organization, or PAHO, located in Washington, DC), Europe, Africa, the Middle East, Southeast Asia, and the Western Pacific. The ILAE and IBE are developing a structure of regional commissions. Through collaboration between regional WHO offices and ILAE/IBE commissions and regional congresses, the campaign is developing a number of regional initiatives, including Demonstration Projects, which study the delivery of cost-effective treatment, services, and care, usually in a small nation, as models for the region (13). The first WHO regional office to initiate activities for the global campaign was PAHO, which in 1997 adopted Resolution CD40-R19, making epilepsy a health priority and urging the organization’s member states to develop appropriate programs. PAHO has since surveyed the poor services and resources for people with epilepsy within its region and confirmed the need for the campaign (14). It is helping to set up initial Demonstration Projects in one or possibly two countries. Europe, which has many league and bureau chapters, has also been very active. One of its first initiatives was to hold a meeting of all European chapter delegates, sponsored by the German government, in Heidelberg in 1998. The product of this meeting was the European Declaration on Epilepsy, a document that highlights for the European Parliament and other European governmental agencies the major problems relating to epilepsy in Europe and specifies the actions recommended to correct them. The declaration is currently being translated into several European languages and is being used by many European chapters to lobby their governments on behalf of individuals with epilepsy. Regional campaigns in Africa were launched in May 2000, with a major conference in Senegal that generated an African declaration on epilepsy (15). In addition, Demonstration Projects are planned in one or two countries. Similarly, a Latin American declaration on epilepsy will be generated from a regional meeting in Chile to be held in September 2000, and an Asian declaration from a regional meeting in New Delhi in November 2000. Finally, a Demonstration Project is planned for another region, China, which is a major supporter of the campaign. Following the WHO Cabinet decision in December 1999, all the WHO regional
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Global Campaign Against Epilepsy
offices are now integrated into and supporting the campaign.
APPENDIX: CONTACT ADDRESSES Further information on the Global Campaign against Epilepsy can be obtained from:
National Programs As previously noted, the main thrust of the campaign is at the national level, where local needs and solutions for people with epilepsy are best known. Already more than 40 countries are undertaking local initiatives through chapter or other epilepsy organizations, collaborating with their ministries of health or local WHO offices. The number of national initiatives is growing rapidly. Rather than suggesting solutions for each country, the ILAE/IBE/WHO campaign respects the capability and right of each nation to determine these answers for themselves. Thus, the campaign provides support, addressing the problems and needs that each country identifies for itself. Several kinds of support for national campaigns are available through the global and regional structures, including public awareness information and educational materials, as well as information about political contacts, not only through WHO, but also through other partners, including UNICEF. In addition, methods of local needs assessment for people with epilepsy, as well as models of epilepsy service provision at primary, secondary, and tertiary levels, are available. Also available is information on conducting research and on working within the legal system to change laws that discriminate against individuals with epilepsy. Finally, the campaign can provide support to individual countries for local fundraising.
CONCLUSION The universal problem of epilepsy has been known to mankind for more than 3000 years, and since that time, it has been the subject of misunderstanding, ignorance, and stigma, adding to the burden of those who suffer from the disorder. This has largely prevented the new knowledge about epilepsy that has accumulated in the last century from being applied in most of the world. It is the goal of the ILAE/IBE/ WHO campaign to address this neglect and injustice by raising awareness, increasing education, and improving services to reduce the treatment gap and bring epilepsy out of the shadows throughout the world.
The International League against Epilepsy Office: Epilepsie Zentrum Bethel Mara 1—Maraweg 21 Bethel—33617 Bielefeld Germany Key Contact: Dr. E. H. Reynolds Institute of Epileptology King’s College Denmark Hill Campus Cutcombe Road London SE5 9PJ, United Kingdom Telephone: ⫹44 1 737 360 867 Fax: ⫹44 1 737 363 415 E-mail: [email protected] The International Bureau for Epilepsy Office: Stichting Epilepsie Instellingen Nederland Key contact: Hanneke M. de Boer PO Box 21 2100 AA Heemstede The Netherlands Telephone: ⫹31 23 5 237 418 Fax: ⫹31 23 5 470 119 E-mail: [email protected] The World Health Organization (WHO) Team for Neurosciences Key Contact: Dr. L. L. Prilipko Department of Mental Health World Health Organization 1211 Geneva 27 Switzerland Telephone: ⫹41 22 791 3627 Fax: ⫹41 22 791 4160 E-mail: [email protected] Regional Offices of WHO WHO Regional Office for Africa (AFRO) Parirenyatwa Hospital PO Box BE 773 Harare, Zimbabwe Telephone: ⫹263 407 733 9244 Fax: ⫹263 407 726 5062 E-mail: [email protected] WHO Regional Office for the Americas (PAHO) 525 23rd Street, NW Washington, DC 20037 Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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Edward H. Reynolds
Telephone: ⫹1 202 974 3000 Fax: ⫹1 202 974 3663 WHO Regional Office for the Eastern Mediterranean (EMRO) PO Box 1517 Alexandria—21511, Egypt Telephone: ⫹203 48 202 23/24, ⫹48 300 90 Fax: ⫹203 48 300 96/97 WHO Regional Office for Europe (EURO) 8, Scherfigswej DK-2100 Copenhagen Ø, Denmark Telephone: ⫹45 39 17 17 17 Fax: ⫹45 39 17 18 18 WHO Regional Office for Southeast Asia (SEARO) World Health House, Indraprastha Estate Mahatma Gandhi Road New Delhi 110002, India Telephone: ⫹91 11 331 7804, ⫹91 11 331 7823 Fax: ⫹91 11 332 7972 WHO Regional Office for the Western Pacific (WPRO) PO Box 2932 1099 Manila, Philippines Telephone: ⫹632 52 88 001 Fax: ⫹632 52 11 036, ⫹ 632 53 60 279
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Kinnier Wilson JV, Reynolds EH. Translation and analysis of a cuneiform text forming part of a Babylonian treatise on epilepsy. Med Hist 1990;34:185–98.
Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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World Health Organization (WHO). Epilepsy: historical overview, Fact Sheet 168. Geneva: WHO, June 1997. World Health Organization (WHO). Epilepsy: aetiology, epidemiology and prognosis, Fact Sheet 165. Geneva: WHO, June 1997. Sander JWAS, Shorvon SD. Epidemiology of the epilepsies. J Neurol Neurosurg Psychiatry 1996;61:433– 43. Jallon P. Epilepsy in developing countries: ILAE workshop report. Epilepsia 1997;38:1143–51. World Health Organization (WHO). Epilepsy: scientific and medical advances, Fact Sheet 167. Geneva: WHO, June 1997. World Health Organization (WHO). Epilepsy: social consequences and economic aspects, Fact Sheet 166. Geneva: WHO, June 1997. World Health Organization (WHO). Bringing epilepsy out of the shadows: a global campaign is launched, Press Release 48. Geneva: WHO, June 1997. International Bureau for Epilepsy (IBE), World Health Organization (WHO), International League against Epilepsy (ILAE). European Declaration on Epilepsy, October 25, 1998, Heidelberg, Germany. Pharoah C, Smerdon M. Dimensions of the voluntary sector. Kent: Charities Aid Foundation, 1998. Murray CJL, Lopez AD, editors. The global burden of disease. Geneva: Harvard School of Public Health on behalf of WHO and the World Bank, 1996. Epigraph: the newsletter of ILAE. 1999; No. 1. P. 5–7. Consultative meeting on epilepsy project, WHO Report MNH/ NND/99.3. Geneva: WHO, 1999. Levav I, Stephenson C, Theodore W. Epilepsy in Latin America and the Caribbean: a survey on needs and resources. Pan Am J Public Health 1999;6:342–5. World Health Organization (WHO). Out of the shadows: a global campaign against epilepsy. Bringing epilepsy out of the shadows in Africa: ill-informed attitudes prevent up to 80% of Africans suffering from epilepsy from being treated, says WHO, Press Release 30. Geneva: WHO, May 2000.
The ILAE/IBE/WHO 1 Global Campaign against Epilepsy: Bringing Epilepsy “Out of the Shadows” Edward H. Reynolds, M.D., FRCP, FRCPsych Epilepsy affects at least 100 million people worldwide at some time in their lives, especially in childhood and adolescence. It is a universal problem involving all ages, races, social classes, and nations. Nevertheless, it has been misunderstood, feared, and stigmatized for more than 3000 years. The psychosocial and economic consequences of epilepsy are considerable in developed nations but are even greater in developing nations, where the treatment gap may vary from 60 to 98%. To address the long-standing worldwide neglect of this disease, a campaign titled Epilepsy: Out of the Shadows has been launched by an alliance of three global organizations: the International League against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), and the World Health Organization (WHO). Global, regional, and national initiatives are currently underway. © 2000 Academic Press Key Words: epilepsy; global campaign; burden; stigma; treatment gap; World Health Organization; International League against Epilepsy; International Bureau for Epilepsy; “Out of the Shadows.”
INTRODUCTION
largely because of negative public attitudes and political neglect of a hidden, misunderstood, and stigmatized disorder (5, 7). A major global initiative (8) to address epilepsy as a universal disorder has been launched by an alliance of three global organizations: the International League against Epilepsy (ILAE), the professional body of which the American Epilepsy Society (AES) is a chapter; the International Bureau for Epilepsy (IBE), the lay organization of which the Epilepsy Foundation is a chapter; and the World Health Organization (WHO). The combination of these three organizations is a powerful one, and it is the first such collaboration of its kind in the field of neuroscience. The ILAE, IBE, and WHO jointly launched the initiative Epilepsy: Out of the Shadows in the summer of 1997, simultaneously from Geneva, Switzerland, and Dublin, Ireland, during the International Epilepsy Congress (8). The campaign is gradually gathering momentum at global, regional, and national levels.
Epilepsy has been recognized since the earliest medical writings in Babylon more than 3000 years ago (1). The term epilepsy is derived from the Greek word epilepsia, meaning to “take hold of” or “to seize.” In ancient times, it was believed that those affected were being seized or possessed by gods or evil spirits. Hippocrates’ view that “the sacred disease” was not sacred but a disease of the brain was largely ignored until the late 19th century (2).
EPILEPSY: A GLOBAL INITIATIVE FOR A UNIVERSAL DISORDER Epilepsy is the single most common serious brain disorder in every country of the world. It may be the most universal of all medical disorders, affecting all ages, races, social classes, and nations (3–5). In the last century, considerable progress has been made in our understanding of the nature and treatment of epilepsy (6). Regrettably, however, much of this knowledge has not been applied in the developed world, and even less so in the developing world,
WHY A GLOBAL INITIATIVE AGAINST EPILEPSY? The scale of the problem of epilepsy throughout the world is sufficient to suggest the need for an effort of this magnitude; the personal, family, social, and economic consequences of epilepsy compel it further.
1
ILAE, International League against Epilepsy; IBE, International Bureau for Epilepsy; WHO, World Health Organization. 1525-5050/00 $35.00 Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
S3
S4 Worldwide, at least 40 million people, or 7 of every 1000 individuals, currently suffer from epilepsy (3, 4). Over the course of a lifetime, more than 100 million people will have epilepsy. The lifetime risk of experiencing a single seizure is 5%. The annual incidence of epilepsy in developed countries is high, at 50 per 100,000 of the general population, but it is at least doubled in developing countries, where younger overall populations and higher rates of certain predisposing factors, such as acute communicable diseases and perinatal trauma, combine to raise the risk (4, 5). Global Neglect The social stigma surrounding epilepsy contributes to the neglect of this disease by governments, departments of health, and the general public (5, 7). This is not confined to the developing world. In Europe, for example, unemployment rates among individuals with epilepsy are two to three times higher than those in the general population, due primarily to ignorance on the part of employers (9). In the United Kingdom, where the Charities Aid Foundation releases an annual report detailing the amount of money raised for medical charities, £290 million sterling was raised for cancer in 1998, and more than £9 million was raised for leprosy. By contrast, £1.2 million was raised for epilepsy (10). This is in spite of the fact that there are more than 400,000 individuals with epilepsy in the United Kingdom and no new cases of leprosy. This astonishing statistic reflects public ignorance, prejudice, and lack of awareness of epilepsy and its burden, which is no longer the case, as it used to be, for cancer and leprosy. Global Disease Burden Until recently, WHO has focused most of its efforts on disorders with a high mortality rate, particularly communicable diseases. Since the reorganization of WHO in 1998, however, greater emphasis is being placed on diseases that cause prolonged disability without necessarily being accompanied by high mortality. One measure of the global burden of disease is the disability-adjusted life year (DALY) recently adopted by WHO as a method for quantifying the impact of disability-associated diseases such as epilepsy. The DALY is an indicator of the time lived with a disability and the time lost due to premature mortality. It has been used in public health studies conducted by WHO, the World Bank, and the Harvard Medical School to measure the combined impact of the Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
Edward H. Reynolds TABLE 1 Disability-Adjusted Life Years (DALYs) Associated with Epilepsy a DALYs Epilepsy total 5–9 years of age 10–14 years of age 15–19 years of age a
1% 1% 1.6% 0.7%
Reference (11).
disability that occurs with chronic illness due to loss of productivity and earnings and the reduced life span that may also accompany such illnesses (11). This is a potentially important measure of disease burden because some conditions, including neuropsychiatric disease, that appear to have a relatively small economic impact when only mortality is considered, are revealed as a heavy burden when DALYs are calculated. Indeed, using DALY measurements, it has been estimated that 34% of the global burden of disease is due to disability. Neuropsychiatric disorders amount to approximately 15% of the global disease burden (11). Epilepsy accounts for approximately 1% of the total disease burden and is fourth on the list of neuropsychiatric disorders, following depression, alcoholism, and cerebrovascular disease, and similar to the burden of breast and lung cancer. The DALYs associated with epilepsy vary with age, with the greatest toll in children between the ages of 10 and 14 years (Table 1). DALY calculations for epilepsy are likely to be underestimated, because data from epidemiologic studies in developing countries are confined mainly to convulsive forms of epilepsy and may exclude the more difficult-to-diagnose nonconvulsive forms of seizure disorder. Furthermore, the mortality of epilepsy is also often underestimated. Nevertheless, the increasing attention being focused on DALY calculations should raise awareness of the scale of the socioeconomic burden of epilepsy.
CLOSING THE EPILEPSY TREATMENT GAP: A KEY GOAL OF THE GLOBAL CAMPAIGN Underestimation of the socioeconomic impact of epilepsy and the stigmas that surround the disease contribute to an immense treatment gap in developing countries. At a recent commission meeting of the ILAE
S5
Global Campaign Against Epilepsy TABLE 2 The Treatment Gap in Developing Countries, 1988 –1996 a Country
Treatment gap
Ecuador Ethiopia Guatemala India Pakistan Rural Urban Philippines Sudan
88% 98% 69% 75% 94% 98% 73% 85% 60%
a
Reference (12).
in North Africa, consensus was reached on the following definition of the treatment gap: “The treatment gap is the difference between the number of people with active epilepsy and the number whose seizures are being appropriately treated in a given population at a given point in time, expressed as a percentage” (12). Studies conducted between 1988 and 1996 in various developing countries revealed that the treatment gap is, in general, more of a gulf than a gap; it varies between 60% at its lowest point, in Sudan, and 98% in rural Pakistan and Ethiopia (Table 2). Understandably, the treatment gap is invariably greater in rural communities than in urban areas. In rural Pakistan, for example, the treatment gap is 98%, while in urban Pakistan, it is 73% (12). The treatment gap exists in developed countries on a somewhat smaller scale of between 10 and 40%. In certain parts of Eastern Europe, for example, the treatment gap may be between 30 and 40%. The treatment gap in the developing world is illustrated by the global financial market for antiepileptic drugs (AEDs). Currently available data show that 82% of the global financial market for AEDs is concentrated on approximately 15% of the world’s population with epilepsy: 51% in North America, 22% in Western Europe, and 9% in Japan (D. Milton, oral communication, 1997). By contrast, approximately 85% of the people in the world represent 18% of the financial market, with 7% in Latin America, 5% in the Asian Pacific regions, and 6% in the rest of the world. Reasons for the Treatment Gap Studies in both the developed and the developing world demonstrate that epilepsy can be successfully controlled with AEDs in approximately 70% of pa-
tients (3, 5). Yet about three-quarters of individuals with epilepsy throughout the world are not receiving adequate treatment. What are the reasons for this rather scandalous situation? The causes of the treatment gap are complex. An important factor in most developing countries is the poor healthcare delivery infrastructure, including staff, resources, and services, especially in the field of neurological disorders (12). In sub-Saharan Africa, for example, there is one neurologist for every 10 million people. Adding to these problems are difficulties in transportation, compounded by vast distances between sources of medical care and patients. Experience in minimally served areas of developed countries has demonstrated that efforts to increase the provision of healthcare to underserved populations are generally more successful when the healthcare source goes to the patient rather than the other way around. A second cause of the treatment gap is the low priority that so many governments place on epilepsy (8, 12). This is quite frequent in the developed world, and it is almost always the case in developing countries, where the magnitude of high-mortality medical problems, especially communicable diseases, tends to overshadow other diseases. A third reason for the treatment gap is the lack of sustainability of medical treatment in the developing world (12). This is, in part, a cultural issue, in that many individuals in developing countries have no concept of the need to continue medical treatment on a long-term basis for certain conditions; instead, they will seek and adhere to only short-term “cures” for acute conditions. This health-seeking behavior has deep social and cultural roots that can be overcome only with major educational initiatives. Lastly, the treatment gap is related to issues of drug cost, delivery, and availability in developing nations (12). Although this is a major issue, it is far from being the most important one. Experience in developing nations with other major public health problems, particularly communicable diseases, has amply demonstrated that simply delivering drugs to developing countries will not necessarily narrow the treatment gap.
ANATOMY OF A GLOBAL CAMPAIGN: THE MISSION AND THE METHODS The mission of the ILAE/IBE/WHO Global Campaign against Epilepsy is to improve the acceptability, treatment, services, and prevention of epilepsy worldCopyright © 2000 by Academic Press All rights of reproduction in any form reserved.
S6 wide (8). The campaign is aimed primarily at developing countries. However, when it comes to epilepsy, as the previous discussion has illustrated, every country is a developing country. The objectives of the campaign are as follows: • to increase public and professional awareness of epilepsy as a universal, treatable brain disorder; • to raise epilepsy to a new plane of acceptability in the public domain; • to promote public and professional education about epilepsy; • to identify the needs of people with epilepsy on a national and regional basis; • to encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services, and prevention. The campaign has a political dimension; politicians are in the position to most effectively address the problems associated with epilepsy. It is for this reason that the involvement of WHO is so important. The initiative involves interrelated activities on three levels: global, regional, and national.
Global Programs At the global level, the initiative is seeking (1) to persuade the WHO General Assembly to recognize epilepsy as an international health priority and to designate a global epilepsy awareness day and (2) to educate governments and departments of health about the needs and neglect of people with epilepsy. The General Assembly of the World Health Organization is the highest decision-making body of that organization, and it is composed of individual delegates— often the minister of health or a close associate— of all of the world’s countries. Further, WHO does not respond primarily to nongovernmental organizations like the ILAE or the IBE, but to the wishes of national governments as reflected by their delegates. Thus, the ILAE and the IBE will work through their national chapters with the national delegates to influence them in turn to persuade WHO that epilepsy is a critical issue. For this and other reasons, it is the national activities under the global campaign that will ultimately be most important. The campaign has already achieved a major success. In December 1999, the Director-General and Cabinet of the newly reorganized WHO endorsed the campaign, raising it to a new high-level cabinet priority Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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within the organization, thus paving the way for a major boost to the campaign from 2000 through 2005. Regional Programs WHO has six regional offices, serving North and South America (the Pan-American Health Organization, or PAHO, located in Washington, DC), Europe, Africa, the Middle East, Southeast Asia, and the Western Pacific. The ILAE and IBE are developing a structure of regional commissions. Through collaboration between regional WHO offices and ILAE/IBE commissions and regional congresses, the campaign is developing a number of regional initiatives, including Demonstration Projects, which study the delivery of cost-effective treatment, services, and care, usually in a small nation, as models for the region (13). The first WHO regional office to initiate activities for the global campaign was PAHO, which in 1997 adopted Resolution CD40-R19, making epilepsy a health priority and urging the organization’s member states to develop appropriate programs. PAHO has since surveyed the poor services and resources for people with epilepsy within its region and confirmed the need for the campaign (14). It is helping to set up initial Demonstration Projects in one or possibly two countries. Europe, which has many league and bureau chapters, has also been very active. One of its first initiatives was to hold a meeting of all European chapter delegates, sponsored by the German government, in Heidelberg in 1998. The product of this meeting was the European Declaration on Epilepsy, a document that highlights for the European Parliament and other European governmental agencies the major problems relating to epilepsy in Europe and specifies the actions recommended to correct them. The declaration is currently being translated into several European languages and is being used by many European chapters to lobby their governments on behalf of individuals with epilepsy. Regional campaigns in Africa were launched in May 2000, with a major conference in Senegal that generated an African declaration on epilepsy (15). In addition, Demonstration Projects are planned in one or two countries. Similarly, a Latin American declaration on epilepsy will be generated from a regional meeting in Chile to be held in September 2000, and an Asian declaration from a regional meeting in New Delhi in November 2000. Finally, a Demonstration Project is planned for another region, China, which is a major supporter of the campaign. Following the WHO Cabinet decision in December 1999, all the WHO regional
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offices are now integrated into and supporting the campaign.
APPENDIX: CONTACT ADDRESSES Further information on the Global Campaign against Epilepsy can be obtained from:
National Programs As previously noted, the main thrust of the campaign is at the national level, where local needs and solutions for people with epilepsy are best known. Already more than 40 countries are undertaking local initiatives through chapter or other epilepsy organizations, collaborating with their ministries of health or local WHO offices. The number of national initiatives is growing rapidly. Rather than suggesting solutions for each country, the ILAE/IBE/WHO campaign respects the capability and right of each nation to determine these answers for themselves. Thus, the campaign provides support, addressing the problems and needs that each country identifies for itself. Several kinds of support for national campaigns are available through the global and regional structures, including public awareness information and educational materials, as well as information about political contacts, not only through WHO, but also through other partners, including UNICEF. In addition, methods of local needs assessment for people with epilepsy, as well as models of epilepsy service provision at primary, secondary, and tertiary levels, are available. Also available is information on conducting research and on working within the legal system to change laws that discriminate against individuals with epilepsy. Finally, the campaign can provide support to individual countries for local fundraising.
CONCLUSION The universal problem of epilepsy has been known to mankind for more than 3000 years, and since that time, it has been the subject of misunderstanding, ignorance, and stigma, adding to the burden of those who suffer from the disorder. This has largely prevented the new knowledge about epilepsy that has accumulated in the last century from being applied in most of the world. It is the goal of the ILAE/IBE/ WHO campaign to address this neglect and injustice by raising awareness, increasing education, and improving services to reduce the treatment gap and bring epilepsy out of the shadows throughout the world.
The International League against Epilepsy Office: Epilepsie Zentrum Bethel Mara 1—Maraweg 21 Bethel—33617 Bielefeld Germany Key Contact: Dr. E. H. Reynolds Institute of Epileptology King’s College Denmark Hill Campus Cutcombe Road London SE5 9PJ, United Kingdom Telephone: ⫹44 1 737 360 867 Fax: ⫹44 1 737 363 415 E-mail: [email protected] The International Bureau for Epilepsy Office: Stichting Epilepsie Instellingen Nederland Key contact: Hanneke M. de Boer PO Box 21 2100 AA Heemstede The Netherlands Telephone: ⫹31 23 5 237 418 Fax: ⫹31 23 5 470 119 E-mail: [email protected] The World Health Organization (WHO) Team for Neurosciences Key Contact: Dr. L. L. Prilipko Department of Mental Health World Health Organization 1211 Geneva 27 Switzerland Telephone: ⫹41 22 791 3627 Fax: ⫹41 22 791 4160 E-mail: [email protected] Regional Offices of WHO WHO Regional Office for Africa (AFRO) Parirenyatwa Hospital PO Box BE 773 Harare, Zimbabwe Telephone: ⫹263 407 733 9244 Fax: ⫹263 407 726 5062 E-mail: [email protected] WHO Regional Office for the Americas (PAHO) 525 23rd Street, NW Washington, DC 20037 Copyright © 2000 by Academic Press All rights of reproduction in any form reserved.
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Telephone: ⫹1 202 974 3000 Fax: ⫹1 202 974 3663 WHO Regional Office for the Eastern Mediterranean (EMRO) PO Box 1517 Alexandria—21511, Egypt Telephone: ⫹203 48 202 23/24, ⫹48 300 90 Fax: ⫹203 48 300 96/97 WHO Regional Office for Europe (EURO) 8, Scherfigswej DK-2100 Copenhagen Ø, Denmark Telephone: ⫹45 39 17 17 17 Fax: ⫹45 39 17 18 18 WHO Regional Office for Southeast Asia (SEARO) World Health House, Indraprastha Estate Mahatma Gandhi Road New Delhi 110002, India Telephone: ⫹91 11 331 7804, ⫹91 11 331 7823 Fax: ⫹91 11 332 7972 WHO Regional Office for the Western Pacific (WPRO) PO Box 2932 1099 Manila, Philippines Telephone: ⫹632 52 88 001 Fax: ⫹632 52 11 036, ⫹ 632 53 60 279
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