Jerome Engel, Jr.

Provide Platform for General Awareness

Regional Conferences

As part of general awareness-raising, regional conferences on public health aspects of epilepsy have been organised. Such regional conferences took place in all six WHO regions. The last region to have its Regional Conference was EMRO, where a conference was held in Cairo, Egypt in March 2003 and as in the other regions a Regional Declaration was developed and adopted.

Development of Regional Reports

Status reports on the implementation of the GCAE are being prepared in a number of WHO regions (AFRO, SEARO, WPRO, AMRO/PAHO), which will include the data collected through the questionnaires. These documents are intended to be tools for advocacy and instruments for dialogue with governments, health care providers, donors and other partners. The reports are working papers and provide basic knowledge on epilepsy and basic facts about the epidemiological burden, as well as proposals for the next steps to be taken.

Sessions, Lectures, Meetings and Symposia

Sessions were organised in Beijing, China, at the International Child Neurology Congress (21-25 September 2002), in Nagano, Japan at the 4th Asian and Oceanian Epilepsy Congress (12-14 September 2002) and during the Eastern Mediterranean Congress in Athens, Greece (22-24 November 2001).

A lecture was delivered in Sao Paulo, Brazil at the 3rd meeting of the Brazilian Epilepsy Association (2 June 2002) and finally a progress report was delivered at the annual meeting during the meeting of Non-Governmental Organisations in neurology, neuroscience and psychiatry, which is convened by WHO (16 December 2002).

A preparatory strategic planning meeting was organised in Basel following the meetings of the Joint Executive Committees earlier this year, with the aims to:

• discuss the progress and the prospects of the ongoing activities under the Global Campaign
• start the thinking process for the next phase of the Global Campaign
• initiate the organisation of a strategic planning meeting to be held in 2004/2005
• discuss fundraising activities

On 26 April 2003 EPICADEC (Epilepsy Care in Developing Countries) funds were transferred to IBE and ILAE. On the occasion of this transfer a symposium was organised.

Information and Public Relations

• The existing brochure about the Global Campaign was expanded and updated and has now been reprinted.
• Quarterly Global Campaign Newsletters were produced and disseminated.
• Numerous articles on the Global Campaign were published in national newsletters of IBE/ILAE chapters, and brochures and leaflets were developed in many countries.

Two publications need to be mentioned especially: A supplement of Epilepsia was published in October 2002, reporting on the launch of the Global Campaign and a Manual for Medical and Clinical Officers in Africa (August 2002) was published, based on a manual written by the late Nelly Dekker, a Dutch expatriate doctor who had worked in Ethiopia and Kenya for many years. She was co-founder of the Kenyan IBE chapter.

Assist Departments of Health in the Development of a National Epilepsy Strategy

Country Resources for Epilepsy Questionnaire

These questionnaires were sent to all 196 WHO member states and all IBE or ILAE chapters with the aim to map the needs and resources for epilepsy world-wide.

In addition they have been translated into French and Spanish for use in the French speaking countries of Africa and for Latin America. The questionnaires are now being collected in all six WHO Regions.

The collection of completed questionnaires is ongoing with the assistance of some of the WHO Regional Advisors on Mental Health as well as some members of IBE and ILAE.

To date questionnaires have been returned from over 100 countries.

Demonstration Projects

China : In China, 55,616 people were screened in five provinces. A paper based on the outcomes of the first phase was published in the journal Neurology in May 2003. The outcomes of the epidemiological phase are illuminating.

Previously the lifetime prevalence of epilepsy was thought to be approximately 4 in 1,000. From such figures it was also estimated that there would be around 5 million people with epilepsy in the country. Now the estimate is found to be 7 in 1,000. Therefore the estimated number of people with epilepsy in China is almost 9 million.

There is a possibility to extend the project nation-wide; fundraising efforts are being made through WHO channels.

Zimbabwe: The epidemiological survey has been completed, and the next phase is about to begin.

Senegal: The Senegalese Project is completed and the results are being analysed.

Argentina: The protocol for the Project has been finalised. An updated budget and a plan for fundraising are being developed.

Brazil: A Meeting of Principal Investigators was held concerning the initiation and implementation of a Demonstration Project in Brazil.

Pakistan : Through a local initiative a Comprehensive Epilepsy Control Programme (CECP) was launched in Karachi in March 2001 and is now extending services all over Pakistan.

Technical Consultative Meetings

Technical consultative meetings were organised by the WHO Regional Advisors for Mental Health in collaboration with the Global Campaign Secretariat with the aim to:

• review the present state of epilepsy in the regions;
• discuss regional reports on epilepsy;
• review the implementation of the GCAE in the region, including the progress of Demonstration Projects;
• develop a framework of action for countries.

Such meetings took place in Togo (March 2002) and Zimbabwe (4-5 June 2001 and 22-24 October 2002) in AFRO, in Thailand (19-22 November 2001) and Myanmar (23-25 September 2002) in SEARO, in the Philippines (14-15 November 2001) in WPRO and in Argentina (6-7 July 2001) and Brazil (08-10 August 2002 and 13-14 June 2003) in AMRO/PAHO.

Other Activities
Development of Evidence-based Guidelines

Guidelines on the treatment of epilepsy in childhood and adolescence are being developed in collaboration with the WHO Department of Child and Adolescent Health and Development (CAH) and with the support of the WHO collaborative centre, OASI, Sicily, Italy. These guidelines will hopefully be finalised by the Lisbon congress, ready for field-testing.

WHO Regional Advisers on Mental Health

The annual meeting of the Regional Advisers for Mental Health was held in WHO Headquarters in Geneva in March 2002. For the second year "epilepsy" appeared on the agenda and representatives of IBE and ILAE were invited to participate in the discussions on this topic.

Global Campaign Secretariat:
Hanneke M. de Boer (IBE)
Jerome Engel, Jr. (ILAE)
Leonid Prilipko (WHO)