In 1997, three international organizations, the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) joined forces to initiate a Global Campaign Against Epilepsy (GCAE). The mission statement of the Campaign is: To improve the acceptability, treatment, services and prevention of epilepsy world wide.
The objectives of the Campaign are:
- To increase the 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.
Since September 2005, the GCAE has been chaired by Philip Lee on behalf of IBE and Giuliano Avanzini on behalf of ILAE. The secretariat is established in Heemstede under the responsibility of Hanneke de Boer.
I would like to express, also on behalf of my co-chair, our great appreciation for the outstanding work carried out by the previous GCAE chairpersons Jerome Engel Jr. on behalf of ILAE and Hanneke de Boer on behalf of IBE. A special recognition is due to Leonid Prilipko, Program Leader of Neurology with a special emphasis on epilepsy at WHO from 1986 until his retirement in 2005. His work has greatly contributed to implementing GCAE initiatives in the context of WHO agenda. We are committed to continue their work and, in addition, to develop some new lines of activity that I will comment upon shortly.
The strategy of the GCAE has been to follow two parallel and simultaneous tracks: 1) raising of general awareness and understanding of epilepsy, and 2) supporting departments of health in identifying needs and promoting education, training, treatment, services, research and prevention nationally.
The first two phases were mainly devoted to provide a platform for general awareness on epilepsy. The Campaign was intensified and boosted in 2000 by the participation of the Director-General of WHO, WHO Regional Directors and Presidents of relevant NGOs. Actions included the announcement of a Global Awareness Day for Epilepsy and the organization of regional conferences on public health aspects of epilepsy in the six WHO Regions, including a Declaration on Epilepsy, based on the European model. Information and support were provided for national initiatives under the GCAE and Demonstration Projects (DP) started. These illustrated good practice in providing services to people with epilepsy and could be used as models of what can be achieved. The ultimate goal of the DPs is the development of models of epilepsy control that can be integrated into the health care systems of the participating countries and regions and, finally, applied on a global level.
The third phase of the GCAE was launched this year, during which the ongoing actions (namely the DP on the treatment gap) will be complemented by other initiatives aimed at getting a direct impact on the burden of epilepsy across the world. The following actions are planned:
- To complete the ongoing and planned DP (Argentina, Brazil, Congo, Kenya, Georgia, China, Djibouti, DPR Korea, India, Indonesia, Maldives, Moldova, Mongolia, Myanmar, Rumania, Sudan, Timot-l’Este, Yemen).
- To develop regional atlases of epilepsy resources available in individual countries.
- To review the existing legislations relevant to epilepsy and to develop recommendations adequate to promote and protect human rights of people with epilepsy.
- To develop projects on surgery and stigma.
- To develop research plans for multi-center collaborative studies involving developed and developing countries.
The newly appointed ILAE Commission on Epilepsy Care will be involved in the further development of the third phase of the Campaign, taking into account the inputs that will be provided by ILAE and IBE Chapter members.
I would like to mention some points that seem to me rather innovative.
The right to equal treatment is clearly described in law (UN and Treaty of Amsterdam) and deserves the protection of enforceable legal remedies. However, laws impacting the lives of people with epilepsy are outdated and fail to adequately promote and protect human rights or even actively violate rights due to being based on centuries of stigmatization. Furthermore, in many countries legislation is totally absent. Well crafted legislation that is based on internationally accepted human rights standards can prevent violations and discrimination; promote and protect human rights; enhance the autonomy and liberty of people with epilepsy; and improve equity in access to healthcare services and community integration. Legislation can serve to legally enforce the goals and objectives of policies and programs related to epilepsy. Within the framework of the GCAE, a project on ”epilepsy and legislation” is being planned with the aim of collecting information on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate healthcare from countries all over the world. This information will be collated in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy.
Projects on Surgery and Stigma
Epilepsy surgery is a safe and effective alternative treatment for a wide variety of epileptic conditions that cannot adequately be treated with antiepileptic drugs. Investment in epilepsy surgery centers, even in the poorest regions, could greatly reduce the economic and human burden of epilepsy. Yet there is a marked treatment gap with respect to epilepsy surgery even in industrialized countries.
- 80% of the cost of epilepsy is due to patients whose seizures are not controlled with drugs.
- 80% of the burden of epilepsy is in the developing world.
- Most patients with surgically remediable epilepsy can now be diagnosed non-invasively with EEG and MRI.
- The major investment for epilepsy surgery is in appropriately trained personnel.
- Surgical treatment should, and can, be made available to people who live in developing countries.
In view of the above, the WHO initiated contact with the president of the World Federation of Neurosurgical Societies in order to investigate whether a project on surgery may be feasible, possibly in collaboration with this NGO.
The project on stigma is a continuation of a study started in 2004 thanks to the NIH Fogarty foundation preparatory grant (TW-03-007) for a pilot project to develop culturally appropriate approaches to reduce stigma and discrimination within the framework of the Campaign. The results of the literature search will guide further developments of the project that will start with ethnographic studies exploring the prevailing beliefs and attitudes to epilepsy in China and Vietnam. Using in-depth interviews and focus groups, data will be gathered from people with epilepsy, their family members, their local communities and their general and specialized healthcare workers. It is anticipated that study findings will provide insights into the dimensions of epilepsy stigma identifiable in these two countries and highlight the similarities and differences in order to gain an understanding of:
- Ideas held about epilepsy (explanatory models of causation, treatment, prevention).
- The impact of these ideas on attitudes toward having epilepsy.
- Ideas and practices relating to its management as a health condition.
- Ideas and practices relating to its management as a potential source of stigma.
- Research plan for multicenter collaborative studies involving developed and developing countries.
- A number of important aspects of epilepsy research need collaborative studies that involve countries belonging to different parts of the world. Typical examples are epidemiological and genetic studies and clinical trials.
Aims of this activity are:
- To collect the needs of research from the Regional Commissions and individual regions.
- To stimulate collaborative studies involving countries with different economic situations.
- To develop guidelines and recommendations to facilitate interactions between participants.
- To develop an action plan in the context of the activities of the Commission on Developing Care in consultation with the IBE/ILAE Regional Commissions, Resource and Problem Oriented Commissions, WHO Regional Offices and the Campaign itself.
In developing all GCAE actions, particular attention will be given to the special needs of the different world regions and the Campaign will take advice on these matters from the ILAE, IBE and WHO Regional Commissions and organizations. In addition, we would greatly welcome input from chapters or individuals that may help us in improving our activity to the final aim of alleviating the burden of epilepsy all over the world. .
Note: On 5 and 6 May in Campinas, Brazil, Dr Li Li Min and representatives of ILAE, IBE and WHO presented the final results of the Demonstration Project carried out in Brazil from 2003 to 2006 in the frame of the GCAE. The results were so favorable that the Brazilian Health Minister in an official document in Campinas adopted it as a nationwide design for the Brazilian Epilepsy National Plan.
Past President, GCAE Co-chair