Artigo Revisado por pares

ILAE/IBE/WHO Global Campaign “Out of the Shadows”: Global and Regional Developments

2001; Wiley; Volume: 42; Issue: 8 Linguagem: Inglês

10.1046/j.1528-1157.2001.0420081094.x

ISSN

1528-1167

Autores

E. H. Reynolds,

Tópico(s)

Epilepsy research and treatment

Resumo

The spring of 2001 has seen two major events in the International League Against Epilepsy (ILAE)/International Bureau for Epilepsy (IBE)/World Health Organization (WHO) Global Campaign to bring epilepsy "out of the shadows." On February 12, the second-phase launch of the Campaign took place at WHO headquarters, Geneva, led by the Director General, Dr. Gro Harlem Brundtland, with the participation of senior WHO staff from the "clusters" and departments responsible for or related to the Campaign, the Regional Mental Health officers from all six WHO Regional offices, John Bowis, MEP, representing national governments and the European Parliament, the Executive Committees of ILAE and IBE, the Executive Board of the Campaign, many representatives from national Chapters of the League and the Bureau, and invited guests including several national ambassadors to WHO 1(Figure 1). Dr. Gro Harlem Brundtland, Director General of WHO, addressing the second-phase launch, Geneva, February 12, 2001. Left to right: Professor Pete Engel, President ILAE; Ms. Hanneke de Boer, Chairman, Global Campaign, Past President IBE; Dr. Derek Yach, Executive Director Non Communicable Diseases and Mental Health WHO; Dr. Gro Harlem Brundtland; Dr. Bernadetto Saraceno, Head, Department of Mental Health WHO; Dr. Leonid Prilipko, Head, Neuroscience WHO; Dr. Ted Reynolds, Past Chairman Global Campaign, Past President ILAE; Mr. Philip Lee, President IBE. On March 22, the European "White Paper" on Epilepsy was launched at the European Parliament by John Bowis in the presence of politicians, professionals, patients, and public from all over Europe, the event being generously sponsored by the pharmaceutical firm, UCB 2. These global and regional events are the latest milestones in the ILAE/IBE/WHO Global Campaign to bring Epilepsy "out of the shadows," which was launched in 1997 3. They also mark a new phase, intensification, and status of the Campaign, which is designed ultimately to assist national governments and epilepsy organisations to develop their own "out of the shadows" plans and initiatives. Epilepsy is the most common serious brain disorder and a global problem affecting all ages, races, social classes, and countries. It imposes enormous physical, psychological, social, and economic burdens on individuals, families, and countries, especially because of misunderstanding, fear, and stigma. These problems are universal but are greatest in the developing world, where 85% of the 50 million people with epilepsy live, and as many as three quarters receive no diagnosis or treatment 4-6. Until recently, WHO has focused most of its efforts on disorders with a high mortality rate, particularly communicable diseases. Since the reorganisation 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 of quantifying the impact of disability-associated diseases such as epilepsy. Epilepsy accounts for ∼1% of the total disease burden, similar to the burden of breast and lung cancer 5, 7. Prior to the launch of the Campaign in 1997, several studies over the previous decade had shown that the "treatment gap" in developing countries varied between 60 and 98%(Table 1) (4,6). It also was recognised that despite availability of treatment in developed countries, the social problems relating to lack of public understanding and negative attitudes were again very great, the quality of services was poor, and fewer than a handful of governments had any plans for people with epilepsy in their country. In the last century, considerable progress has been made in our understanding of the nature and treatment of epilepsy. Regrettably, however, much of this knowledge has not been applied in the developed world, and even less so in the developing world, largely because of negative public attitudes and political neglect of a hidden disorder. By 1996 the League and the Bureau had both grown to truly global organisations and had established a good working relationship. Both were nongovernmental organizations (NGOs) formally affiliated to WHO. The relationship with WHO, however, amounted to little more than an annual exchange of information. The proposal was developed of a much more active and effective relationship by a partnership between the professional (ILAE), the public/patients (IBE), and the political (WHO) as a potentially powerful way of addressing the needs of people with a common, universal, and stigmatized brain disorder. In June 1996 the League's Commission on Developing Countries arranged a 2-day Workshop in Geneva with experts from the League, the Bureau, and the WHO, and representatives from every continent. The more general and the more specific needs of people with epilepsy in developing regions were discussed and identified in more detail as a prelude and platform on which to build the Campaign 4. This was followed by the launch of the "out of the shadows" ILAE/IBE/WHO Global Campaign Against Epilepsy on June 19, 1997, in Geneva and 2 weeks later on July 3 in Dublin at the 22nd ILAE/IBE International Congress 3. The mission of the Campaign is to improve acceptability, treatment, services, and prevention of epilepsy worldwide. It is postulated that 70 to 80% of people with epilepsy could lead normal lives if properly treated. The strategy of the Campaign includes two parallel and simultaneous tracks: (a) raising of public and political awareness and understanding of epilepsy, and (b) supporting Departments of Health in identifying needs and promoting education, training, treatment, services, research, and prevention nationally. The Campaign includes international, regional, and national dimensions, which are interrelated. To increase public and professional awareness of epilepsy as a universal, treatable brain disorder. To promote public and professional education about epilepsy. To change attitudes, dispel myths, and raise epilepsy on to a new plane of acceptability in the public domain. To identify the needs of people with epilepsy on a national, regional, and global basis. To encourage governments and departments of health to develop their own national campaigns to improve prevention, diagnosis, treatment, care, services, and public attitudes. A key concept of the Campaign is that it includes interrelated global, regional, and national components. The WHO has six regional offices that are closely integrated with the Geneva headquarters. In recent years, the League and the Bureau have developed their own regional structures and activities that can interact with WHO at regional level. Ultimately, the global and regional activities of the Campaign are designed to stimulate, encourage, and assist national governments and epilepsy organisations to develop their own "out of the shadows" Campaigns, based on their own local knowledge of the problems and solutions for people with epilepsy. As the highest decision-making body of the WHO, the General Assembly, is made up of a national representative from each country, the more countries that get involved in the Campaign, the greater the impact this will have at the global level. As emphasized by Dr. Brundtland in her speech of February 12 (Appendix 2), the first phase of the Campaign has focused on the first three objectives: increasing awareness, creating acceptance, and improving education. The success of this phase is reflected in the milestones summarised in Table 2, and in the fact of the second-stage launch and plans, and also in the higher priority given to the Campaign by WHO. At the global level, the most important achievement has been the development and acceptance in December 1999 of the Cabinet Paper on the Global Campaign, which raises the status of the Campaign to the highest level within the new priorities of the reorganized WHO. Epilepsy is the first neurological disorder to be accorded this status. This has paved the way for the second-phase launch and a new 4-year plan. As emphasized by Dr. Brundtland, the Campaign against Epilepsy is at the forefront of this year's World Health Day and Report on mental and brain disorders. The first Regional Declaration on Epilepsy was in Europe in October 1998, following a Conference of more than 100 professionals, patients/public, and politicians from all areas of Europe in Heidelberg, sponsored by the German Government. In the year 2000, similar Regional Declarations based on the European format have been developed in Africa in Senegal (May), Latin America in Chile (September), Asia and Oceania in India (November), and North America in the United States (December). In all, more than 1,200 experts from more than 100 countries have participated in these Regional Conferences and Declarations. The European Declaration called for and led to much work in the preparation for the "White Paper" for Europe, which was launched at the European Parliament by John Bowis, MEP for London, on March 22. Most encouraging of all in the last 3 years is that more than 50 countries in all continents have joined the Campaign in their own "out of the shadows" initiatives. With global and regional support, the main thrust of the Campaign is to encourage and assist local national programmes and plans for epilepsy where the country's needs and solutions are best understood and implemented. The launch of the second phase of the Campaign marks a new intensification, direction, and four-year plan: and a higher WHO priority, reflected in Cabinet status. As part of the overall objective of supporting national departments of health to identify needs and promote education, training, treatment, services, and prevention, a major theme of the second phase are Demonstration Projects in selected countries in different regions. A major longer term goal of such Projects is to evaluate models of epilepsy care which could be applied to other developing countries in that region within existing healthcare systems. The criteria for country selection and the principles and methods of Demonstration Projects, which include case ascertainment, an intervention to improve treatment, and professional education, have been carefully discussed, agreed and documented 8, 9. The objectives of the Demonstration Projects are: to reduce the treatment gap and the physical and social burden of people with epilepsy by intervention at a community level. to train and educate health professionals. to dispel stigma and to promote a positive attitude to people with epilepsy in the community. to identify and assess the potential for prevention of epilepsy. to develop models for promotion of epilepsy control worldwide and for its integration in the health systems of participating countries. At the second-phase launch Demonstration Projects were announced in four countries: Argentina, China, Senegal, and Zimbabwe. Other countries in different regions/continents are being considered. Other activities designed to assist Demonstration Projects and national plans are so-called Technical Consultations (i.e., workshops/Symposia) with international experts on the following topics: The burden of epilepsy and cost-effective interventions Guidelines for treatment with essential drugs for epilepsy The diagnosis and treatment of childhood and adolescent epilepsy The emphasis for all three consultations will be on developing countries. Another dimension to the second phase is to complete the Regional Conferences/Declarations in the Eastern Mediterranean/Middle East (EMRO) and Western Pacific (WPRO) regions. Finally, a continuing major aspect of Phase Two will be to encourage, stimulate, and support as many countries as possible to develop their own national plans and "out of the shadows" initiatives through Regional Declarations, "White Papers," Demonstration Projects, and any other awareness-raising and political avenues. Europe, for example, has a relatively new opportunity as the European Parliament now has a remit for health promotion. As John Bowis emphasised, this is the ideal time to raise the profile of epilepsy within the European Community and to work for changes in budgeting and policy making relating to people with epilepsy. Other political groupings, structures, and policy-making avenues will need to be approached in other regions. It remains the case that ultimately national governments working with local epilepsy and other neuroscience organisations are responsible for and know best the needs and solutions for their own people with epilepsy. In addition to the awareness, encouragement, and support generated by the Global Campaign and its regional activities, the Campaign Secretariat can assist national chapters, epilepsy organisations, or individuals wishing to promote the aims of the Campaign in their own countries in several ways by providing: public awareness information and educational materials; information about political contacts, not only through WHO but also through other partners, including UNICEF; methods of local needs assessment for people with epilepsy, as well as models of epilepsy service provision at primary, secondary, and tertiary levels; information on research methods and results; advice 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. In her speech at the second-phase launch, Dr. Brundtland concluded, "We have come a long way since the Campaign started 3 years ago. We can now enter the second stage reassured that we are making real improvements to the lives of hundreds of thousands of people, and we are laying the foundations for lasting improvements for millions more." Key Contact: Dr E H Reynolds Institute of Epileptology King's College Denmark Hill Campus Weston Education Centre Cutcombe Road London SE5 9PJ, UK Tel: 44 1737 360 867 FAX: 44 1737 363 415 e-mail:reynolds@buckles.u-net.com Key Contact: Hanneke de Boer PO Box 21 2100 AA Heemstede The Netherlands Tel: 31 23 523 74 18 FAX: 31 23 547 01 19 e-mail:ibe@xs4all.nl Key Contact: Dr Leonid Prilipko Section on Neuroscience Department of Mental Health World Health Organisation CH-1211 Geneva 27 Switzerland Tel: 41 22 791 3621 FAX: 41 22 791 4160 e-mail: prilipko@who.ch WHO Regional Office for Africa (AFRO) Parirenyatwa Hospital PO Box BE 773 Harare, Zimbabwe Tel: 263 407 733 9244 FAX: 263 404 726 5062 e-mail: mandlhate@whoafr.org 525 23rd Street, NW Washington, DC 20037, USA Tel: 1 202 974 3000 FAX: 1 202 974 3663 e-mail: mirandac@paho.org PO Box 1517 Alexandria 21511, Egypt Tel: 203 48 202 23/24 E-mail:ahmadmohit@hotmail.com 8 Scherfigswej DK-2100 Copenhagen, Denmark Tel: 45 39 171717 FAX: 45 39 171818 e-mail: wru@who.dk World Health House Indraprastha Estate Mahatma Gandhi Road New Delhi 110002, India Tel: 91 11 331 7804/7823 FAX: 91 11 332 7972 e-mail: chandrav@whosea.org PO Box 2932 1099 Manila, Philippines Tel: 632 52 88 001 FAX: 632 52 11 036 e-mail: MILANL@who.org.ph Ladies and Gentlemen I welcome you all to this launch of the second phase of the Global Campaign Against Epilepsy. I am especially pleased that this event today marks the beginning of a year in which mental health and brain disorders will be the global focus of attention. As you all know, the theme for this year's World Health Day is mental health and brain disorders, and so is the subject of this year's World Health Report. Our advocacy effort will concentrate on reducing stigma associated with mental illness and neurological disorders and on raising awareness about the many effective, affordable treatments that are available but underused, in both developing and industrialized countries. I will mark the World Health Day twice this year; first in Nairobi on April 4, where the Kenyan health authorities for the first time will arrange an "Open Day" at the country's main mental hospital. Then we will celebrate again here in this room on April 6 in what we hope will be a warm and forceful celebration of the benefits of inclusion and care. The World Health Report will give a comprehensive review of what we know about the current and future global burden of mental ill health and neurological disorders, about the effectiveness of prevention and the availability and restraints to treatment, and about the policies needed to ensure that stigma and discrimination is broken down and effective prevention and treatment are put in place and funded. I am confident that our efforts this year will take mental health a large step forward toward equal priority and respect with physical aspects of health. This past century has seen spectacular changes in the way we live and think. Human brilliance and technology have come together to propose solutions we dared not imagine 40 years ago. We have conquered diseases that once seemed insurmountable. We have saved millions of people from premature death and disability. Our search for better solutions to heath is, as it should be, ceaseless. Mental health is a central part of overall health. When I took office, two and a half years ago, I was convinced that the WHO should devote considerable energies to addressing the challenges posed by mental disorders. Since then, my resolve has only been strengthened. There is also increasingly strong evidence confirming the close relationship between health and development. Ill health taxes the economy of whole nations as well as placing terrible burdens on families. By reducing the burden of disease, we also improve the conditions for reducing poverty. When we talk about reducing the toll from diseases that cause and perpetuate poverty, we often focus on malaria, HIV/AIDS, tuberculosis, early childhood diseases, and problems linked to pregnancy and birth, but we could also include mental and neurological disorders. An estimated 400 million people alive today have mental or neurological disorders or psychological problems such as those related to alcohol and drug abuse. Around 50 million of them have epilepsy. Many of them suffer silently. Many of them suffer alone. Beyond the suffering and beyond the absence of care lie the frontiers of stigma, shame, exclusion, and, more often than we care to know, death. Of those who have epilepsy, around 85% live in developing countries. Two million new cases occur in the world every year. What neurological disorders have in common with mental ill health is that these conditions are victims of stigma, ignorance, and fear. As a result, these diseases receive low priority by authorities and health personnel in many countries. Stigma and discrimination have several consequences: they limit the degree to which patients attend treatment; they limit the degree to which health workers are being trained adequately to identify, assess, and treat disorders; and they may even limit the willingness of mental health care providers to intervene. They also reduce the abilities of the patients to live normal lives in their communities and workplaces and, in some circumstances, prevent them from earning a living altogether. Up to 80% of persons with epilepsy could lead normal lives if properly treated, but the overwhelming majority of patients do not get any treatment at all. The WHO Regional Office for the Americas estimates that of 5 million people with epilepsy in the region, 3.5 million are believed to be untreated. A recent survey of 30 Latin American countries revealed that none of them had national policies for epilepsy. In sub-Saharan Africa, there is one neurologist for 4 million people. So we are facing the two challenges of reducing stigma and of building up capacity to diagnose and treat epilepsy patients world-wide. It can be done. Epilepsy is not difficult to diagnose if health personnel have received a minimal level of training, and it can be effectively treated with safe and inexpensive medication. The main antiepileptic drug, phenobarbitone, can be produced and sold for as little as $5 per person per year. The difference can be between total disability and fully normal life. Research from the United Kingdom shows that around 70% of the estimated costs of epilepsy are caused by premature mortality and disability, leading to need for care and lost productivity. As health workers, we know that few opportunities are as gratifying as being able to restore someone from despair to a normal life. The Global Campaign Against Epilepsy, which was so aptly named "Out of the Shadows," is based on that inspiration. The collaboration between the International Bureau for Epilepsy, the International League Against Epilepsy, and WHO has shown that when people with different backgrounds and roles come together with a shared purpose, creativity is released, and expertise is used in innovative and constructive ways. The original objectives of this campaign were to increase awareness, among both health professionals and the general public, of epilepsy as a universal and treatable disorder; to raise epilepsy to a new plane of acceptability in the public domain; to improve education about epilepsy; to identify the needs of people with epilepsy; and to encourage governments to address the needs of people with epilepsy. The first 3 years have focused on the first three objectives: increasing awareness, creating acceptance, and improving education. Much work has gone into the campaign, and special care has been taken to involve a broad spectrum of experts and professionals. Activities to improve awareness have been held in more than 50 countries world-wide. More than 1,200 health professionals from more than 100 countries have participated in consultations to shape the work in countries and to formulate regional declarations against epilepsy. In doing so, the campaign has built the foundations for achieving the last two objectives. How well we have succeeded in creating awareness and reducing stigma—at least among decision makers in countries around the world—will determine to what extent we will succeed in convincing governments to address the needs of those living with epilepsy. We are here to launch the second phase of the global campaign, and I am pleased to say that judging from the momentum the campaign has created, the considerable efforts from all who are involved have been a success. We today announce demonstration projects against epilepsy in four countries: Argentina, China, Senegal, and Zimbabwe. These four demonstration projects will assess the number of people with epilepsy in each project area and train primary health care workers within the existing primary health service how best to diagnose and treat epilepsy patients. In China, the project will focus on a population of nearly 3 million people. The projects will run for 4 to 5 years. The experiences they yield will form the basis for developing national programmes in the four countries and assisting other countries in designing their own programmes. We have come a long way since the campaign started 3 years ago. We can now enter the second stage reassured that we are making real improvements in the lives of hundreds of thousands of people, and that we are laying the foundations for lasting improvements for millions more. With that inspiration in mind, let us all to do our best to make this second phase of the global campaign a success so that we can truly bring epilepsy out of the shadows. Thank you.

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