1. Epilepsy and WHO | 17 Oct 2008 1 |1 | Demonstration Projects General Objectives –Reduce treatment gap and social and physical burden –Educate health personnel –Dispel stigma –Develop models for promotion of epilepsy control world wide –Integration of epilepsy care in health systems

2. Epilepsy and WHO | 17 Oct 2008 2 |2 | Coordination of Demonstration Projects AFROSenegal, Zimbabwe, Congo, Cameroon, Rwanda AMROBrazil, Honduras EMROPakistan, Afghanistan, Djibouti, Sudan Somalia, Yemen EUROGeorgia, ? SEAROD.P. Korea, India, Indonesia, Myanmar Nepal WPROChina, Mongolia

3. Epilepsy and WHO | 17 Oct 2008 3 |3 | Demonstration Project: China Prior to demonstration project Prevalence: 5.000.000 Treatment Gap: 30% After demonstration project Prevalence: 9 - 12.000.000 Treatment Gap: 65% Prevalence + treatment gap: grossly underestimated

4. Epilepsy and WHO | 17 Oct 2008 4 |4 | Demonstration Project: China Approval by Ministry of Health Expansion: 6 16 provinces 2.5 40 million inhabitants Epilepsy care to be included in primary care in rural China Funding: administrative + financial support through local governments Project Sustainable

5. Epilepsy and WHO | 17 Oct 2008 5 |5 | Demonstration Project: Brazil Situation assessment  Life-time prevalence of epilepsy9.2/1000  Prevalence of active epilepsy5.4/1000  Treatment gap38% Outcome assessment: Model of epilepsy treatment at primary health level based on the existing health system is effective providng important reductions in seizure frquency and general well being Epilepsy has been officially adopted as a theme to be considered in elementary education by the Ministry of Education A National Epilepsy Programme is under review at the Ministry of Health

6. Epilepsy and WHO | 17 Oct 2008 6 |6 | Demonstration Projects Ultimate Goal Development of a variety of successful 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

7. Epilepsy and WHO | 17 Oct 2008 7 |7 | Development of Guidelines Within GCAE framework guidelines to be developed on:  treatment in childhood and adolescence  burden of epilepsy  treatment with essential drugs Ongoing:  Evidence based guidelines for diagnosis and treatment of neonatal seizures in developing countries  Facilitator: WHO Collaborating Centre: Oasi Centre, Italy  Involvement: ILAE/IBE/WHO experts

8. Epilepsy and WHO | 17 Oct 2008 8 |8 | Epilepsy and Legislation Project Background Laws impacting people with epilepsy’s lives outdated Laws fail to adequately promote and protect human rights Laws sometimes actively violating rights In many countries total absence of legislation Examples of legislation based on centuries of stigmatisation in many countries

9. Epilepsy and WHO | 17 Oct 2008 9 |9 | Epilepsy and Legislation Project Objective: Collect information related to existing legislation and regulations in connection with epilepsy in order to review comprehensiveness and adequacy of these legal measures in promoting and protecting rights of people with epilepsy Coordinated by SEIN, Netherlands

10. Epilepsy and legislation | 12 December 2005 10 | Countries who have completed the survey WPREMREURSEARAMRAFR AustraliaIranArmeniaEast TimorBrazilAlgeria ChinaLebanonBelarusIndiaChileEthiopia FijiMoroccoFranceIndonesiaColombiaGambia JapanPakistanGeorgiaNepalCubaGhana Republic of KoreaSaudi ArabiaItalyThailandGuatemalaKenya MalaysiaTunisiaKazakhstanHondurasMozambique MongoliaNetherlandsJamaicaSenegal PhilippinesNorwayMexicoSouth Africa VietnamPolandUSA Romania UK

11. Epilepsy and WHO | 17 Oct 2008 11 | Anti-Stigma Project Background Stigma and exclusion common features of epilepsy in both the developed and developing countries Stigma: major contributor to burden associated with epilepsy Reducing stigma of epilepsy key to reducing impact and improving quality of life Effective health policy initiatives to reduce stigma of epilepsy to be developed and implemented

12. Epilepsy and WHO | 17 Oct 2008 12 | Collaborative Research on Epilepsy and Stigma (CREST) project Phase 1: Pilot projects on development of culturally appropriate approaches to reducing stigma and discrimination associated with epilepsy have been carried out in China and Vietnam Phase 2: A targeted multi-strategy intervention to reduce epilepsy-related stigma in China being developed for funding by the investigators

14. Epilepsy and WHO | 17 Oct 2008 14 | In collaboration with: Alzheimer's Disease International European Parkinson's Disease Association International Association for Study of Pain International Bureau for Epilepsy International Headache Society International League Against Epilepsy Multiple Sclerosis International Federation World Federation of Neurology World Federation of Neurosurgical Societies World Headache Alliance

15. Epilepsy and WHO | 17 Oct 2008 15 | Evidence for public health framework for neurological disorders The burden is already high and increasing further Many neurological disorders can be prevented and treated Cost-effective interventions are available Resources are available, however, inadequate and inequitably distributed Stigma and discrimination are associated with most of these disorders

16. Epilepsy and WHO | 17 Oct 2008 16 | Recommendations for action Gain commitment from decision-makers Increase public and professional awareness Integrate neurological care within the primary health care Incorporate rehabilitation into the key strategies Minimise stigma and eradicate discrimination Develop national capacity and international collaboration Establish links with other sectors Define priorities for research

17. The way forward