The Global Campaign Against Epilepsy was established by IBE, ILAE and WHO in 1997 in response to a perceived global ‘treatment gap’ whereby the vast majority of people with epilepsy in the world do not receive adequate care and treatment for their condition. The campaign’s mission is to bring epilepsy “out of the shadows” by improving the acceptability, treatment, services and prevention of epilepsy worldwide and thereby close the treatment gap. The campaign has progressed through three distinct phases.
Phase I, 1997-2001: Raising public, professional and political awareness – conferences, declarations, reports, etc.
Phase II, 2001-2005: Public and professional education; identification of needs – demonstration projects, needs assessments, evidence gathering, etc.
Phase III, 2005-2009: Special projects, moving from demonstration to adoption and common practice, greater regional involvement
Phase III — Future Focus
We are currently in Phase III of the campaign. During this time the focus of activity is to enhance the involvement of the IBE and ILAE regions by encouraging the participation of the IBE Regional Committees, the ILAE Regional Commissions and the WHO Regional Offices and Advisors. This is being facilitated by establishing regional steering committees for the campaign and by surveying campaign activities at local levels.
Main Activities 2005 – 2009
- Demonstration projects
• Completion of projects underway
Â • Consideration of new projects
- Review of legislation worldwide and its impact on the lives of people with epilepsy
- CREST Project – studying stigma in China and Vietnam
- Regional reports on the status of epilepsy
- Survey of Campaign activities at local level
- Development of the Global Campaign on the internet
- Regional Epilepsy Atlases
- Promotion of multicentric collaborative studies linking centres in developing and developed countries
- Completion of treatment guidelines for children and adolescents
- Development of a fundraising strategy
Summary of Key Developments
Dr Leonid Prilipko
Sadly, we have to report that Dr Leonid Prilipko passed away on 23 April 2007. Dr Prilipko was instrumental in helping to secure the WHO’s support for the Global Campaign in the first instance and then maintaining that support. His personal commitment and practical contribution to the success of the Campaign from its inception in 1997 cannot be underestimated.
- Congo – Integration of epilepsy management at primary care level. A project paid for and initiated by the WHO regional office using protocols developed by or in collaboration with the Global Campaign
- Kenya – Protocol being developed to evaluate an intervention promoting integrated epilepsy care within existing community based health services at two sites in Kenya
- Eastern Mediterranean
An interest in some sort of project has been indicated by each of the following countries. However, specific proposals await the further development of IBE/ILAE Eastern Mediterranean Regional Committee/Commission to provide regional guidance.
- Georgia – Proposal is to test the feasibility of diagnosing and treating convulsive forms of epilepsy at primary care level, using phenobarbital, carbamazepine or sodium valproate as the first option. Thereafter to integrate epilepsy management into the existing primary health delivery system in rural and semi-rural areas of Georgia in a sustainable manner
- Moldova – Proposal in preparation
- Romania – Proposal in preparation
- Latin America
- Brazil – A project to generate procedures that will improve the identification and management of people with epilepsy in urban areas within the existing primary health care system and with community participation and to develop a model of epilepsy treatment at primary health level that can be applied nationwide. Final report completed; papers published in peer reviewed journals; adoption of the project by Brazilian government within a national epilepsy program
- South East Asia The following projects have been initiated by the WHO regional office using protocols developed by or in collaboration with the Global Campaign.
- India – Epilepsy training for physicians, researchers and community health volunteers in four districts of India
- DP Korea – Epilepsy training for neurologists and physicians
- Maldives – Epilepsy training for community health workers and volunteers; data collection on epilepsy patients
- Myanmar – Epilepsy training for health care workers; data collection on epilepsy patients
- Indonesia – Epilepsy training for health care workers
- Timor l’Este – Nurse training in epilepsy identification and management
- Western Pacific
- China – The original demonstration project has now been completed. However, the work it demonstrated has now been extended into 10 provinces covering 15 million people. Depending on the outcome of this development, the Chinese Government is considering extending the project to the whole of rural China.
- Mongolia – Interest indicated; Proposal in preparation
- Contacts have been established with the World Federation of Neurological Societies (WFNS) to investigate the feasibility of a joint project.
- Contact has been established with two groups from the European Commission and Commission on Therapeutic Strategies that are working on guidelines for epilepsy surgery in developing countries.
Epilepsy and Legislation
A methodology has been drafted, a questionnaire has been prepared and is now ready for use in the pilot stage. Pilot countries are being selected with the assistance of the IBE/ILAE regional bodies.
An application to the US National Institutes of Health (NIH) to extend the grant of the CREST project has been so far unsuccessful. The project requires an estimated US$165,150 to develop structured outcome measures of epilepsy-related stigma. IBE and ILAE are considering a request from the project team to provide a bridging grant in order for the measures to be developed and for the project to proceed to an intervention study stage. The team plan to re-apply to NIH to fund the intervention study.
- The Global Campaign Co-Chairs have met with IBE and ILAE regional representatives in Latin America and Asia/Oceania to update them about Global Campaign activities and encourage their future participation and involvement. Regional steering committees have been formed for the campaign. Activities highlighted for the regions include:
- Identifying regional priorities and proposing regional projects
- Co-ordinating with WHO Regional Advisors and IBE/ILAE regional bodies
- Providing guidance via steering committees for demonstration projects
- Providing feedback on existing projects from members/chapters in the region
- Identifying resources within the region – people, money, material, etc.
- Responding to Global Campaign initiatives – like surveys
- IBE and ILAE have been developing regional bodies in the African and Eastern Mediterranean region during 2006. Some preliminary contact has been established with the regional leadership.
- A review of campaign activities at the local level is being carried out by regional representatives through the ILAE Epilepsy Care Commission.
- European regional representatives are now included on the Georgian demonstration project steering committee.
- South East Asia and Western Pacific regional representatives are now included on the CREST project Advisory Group.
Regional reports have been published for Africa, South East Asia and Western Pacific. Regional reports are in progress for AMRO (Latin America/North America), EMRO (Eastern Mediterranean) and Europe.
Following a review of Global Campaign material already on the internet, the old Global Campaign Web site has been closed down and links have been established between the Web sites of ILAE and WHO and IBE and WHO to best display Global Campaign material. Some new Global Campaign content has been drafted for the IBE and ILAE Web sites and an audit and review of Global Campaign publications and written documentation is underway as part of an internet content plan.
- Presentations/Sessions about the Global Campaign were made at the following congresses in 2006/07:
- Helsinki – 7th European Congress on Epileptology
- Guatemala – 4th Latin American Epilepsy Congress
- Kuala Lumpur – 6th Asia Oceania Epilepsy Congress
- Luxor – 1st Eastern Mediterranean Epilepsy Congress
- Thessaloniki – 2nd Pan Hellenic Epilepsy Congress
- Brasov, Romania – 2nd Romanian Epilepsy Congress
- At the 27th International Epilepsy Congress in Singapore, the Global Campaign was incorporated into the main and post main session on “Issues in Developing Countries” on Monday, 9 July focusing on the three gaps — Treatment, Knowledge and Research.
Past President, GCAE Co-chair