Demonstration Projects

Epilepsy and WHO | 17 Oct 20081 |

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


Coordination of Demonstration Projects

AFRO Senegal, Zimbabwe, Congo, Cameroon, Rwanda

AMRO Brazil, Honduras

EMRO Pakistan, Afghanistan, Djibouti, Sudan Somalia, Yemen

EURO Georgia, ?

SEARO D.P. Korea, India, Indonesia, Myanmar Nepal

WPRO China, Mongolia


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


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


Demonstration Project: Brazil

Situation assessment Life-time prevalence of epilepsy 9.2/1000 Prevalence of active epilepsy 5.4/1000 Treatment gap 38%

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


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


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


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Laws impacting people with epilepsy’s lives outdated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


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

Epilepsy and legislation | 12 December 200510 |

Countries who have completed the survey

AFRAMRSEAREUREMRWPRAlgeriaBrazilEast TimorArmeniaIranAustralia

EthiopiaChileIndiaBelarusLebanonChina

GambiaColombiaIndonesiaFranceMoroccoFiji

GhanaCubaNepalGeorgiaPakistanJapan

KenyaGuatemalaThailandItalySaudi ArabiaRepublic of Korea

MozambiqueHondurasKazakhstanTunisiaMalaysia

SenegalJamaicaNetherlandsMongolia

South AfricaMexicoNorwayPhilippines

USAPolandVietnam

Romania

UK


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


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


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


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


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

The way forward

Documents

Demonstration Projects