Global Campaign 2000 A5 bin - who.int · epilambanein which means to seize or attack, and it is...

G l o b a l C a m p a i g na g a i n s t E p i l e p s y

An Introduction to The Global Campaign

and its Demonstration Projects

International Bureau for Epilepsy World Health Organisation International League Against Epilepsy

Bringing Epilepsy out of the Shadows

The Global Campaign against Epilepsy is a joint initiative of theWorld Health Organisation (WHO), the International League

Against Epilepsy (ILAE), and the International Bureau for Epilepsy(IBE) to bring epilepsy “Out of the Shadows” by improving thediagnosis, treatment, prevention and social acceptability of the

disorder world-wide.

Printed by: Paswerk Bedrijven Cruquius, the NetherlandsA sheltered workshop employing people with epilepsy

Copyright: ILAE/IBE/WHO Global Campaign against EpilepsyFebruary 2001

The ILAE/IBE/WHO Global Campaign Against Epilepsy The ILAE/IBE/WHO Global Campaign Against Epilepsy

The ILAE/IBE/WHO Global Campaign Against Epilepsy 1

Why have a Global Campaign? page 2· Introduction· The Burden of Epilepsy

The Global Campaign Against Epilepsy page 4· The Campaign’s Objectives· Raising Awareness

Reasoning Behind the Demonstration Projects page 6· Supporting Departments of Health· The Treatment Gap

The Demonstration Projects’ Management Structure page 9· Overview· The Project’s Objectives

The Project’s Design and Activities page 10· Case Ascertainment· Intervention to Improve Treatment· Education· Outcome Measures

Glossary of Terms page 12

Reference List page 14

Contact Information page 15

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The ILAE/IBE/WHO Global Campaign Against Epilepsy2

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Epilepsy is the most common seriousneurological disorder. It is also oneof the world’s most prevalent non-communicable diseases. The wordepilepsy comes from a Greek wordepilambanein which means to seizeor attack, and it is these seizureswhich have come to characterise thecondition.

Ancient documents from the MiddleEast and Far East show that epilepsyis not a new phenomenon. It is,however, alarming that many peoplewith epilepsy in developing countriesstill die from the condition in amanner not dissimilar to thatrecorded centuries ago. It is also thecase that these countries have ahigher incidence of epilepsy thandeveloped countries.

The higher incidence suggests that adifferent spectrum of causes ofepilepsy may exist there. Parasitic andinfectious diseases such as malaria,neurocysticercosis or meningitis, areimportant risk factors for epilepsy.Birth complications and malnutritionmay also be factors. High levels ofthese different diseases andconditions have been found in peoplewith epilepsy in developing countries.

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The use of Disability Adjusted LifeYears has revealed the large globalburden of neurological andpsychiatric disorders, of whichepilepsy is a part. These disordershave been estimated to cause 11%of all the days lost to health problemsacross the world. Epilepsy itself isthought to contribute around 1% ofthe total days lost1. It is alsoestimated that there are up to 50million people with epilepsyworldwide – with 40 million living indeveloping countries2.Whilst these figures may show theextent of epilepsy, they do not revealits full burden as experienced bypeople with epilepsy.

Seizures themselves obviously have aphysical effect on people. They canalso have a further physical impact,such as injuries sustained during aseizure. In parts of Africa, for

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Fig. 1 Millions of People with Epilepsy


example, epilepsy is known as theburns disease because peopleexperiencing a seizure often fall intotheir open fire used for cooking3.This type of naming is taken onestage further in Indonesiancommunities living on or near riversand where epilepsy is known as thedrowning disease.

Epilepsy will also often have apsychological or an emotionalimpact. It is increasingly recognisedthat people with epilepsy may beaffected far more by such social andpsychological aspects than by theseizures themselves. Uncontrolledseizures can be very unsettling.People with epilepsy may fear goingoutside their homes unaccompanied.

They may also fear what peoplemight think of them if they are seenhaving a seizure.

Throughout the world’s historyepilepsy has been a culturallydevalued condition4. Such devaluingoften leads to people with epilepsybeing stigmatised and causes apsychosocial burden on thoseaffected. Many studies from aroundthe world have shown people withepilepsy as having a lower annualincome, a lower quality of life, lowerschool performance, low self esteem,worse chances of marriage and begenerally excluded from social life.Fig.2 below contains specificinstances of these psychosocialeffects

Fig. 2 Specific Examples of the Psychosocial Impact of Epilepsy

Canada5 - Lower annual income and quality of life than other people withchronic illnesses.

China6 - Difficulties finding a spouse; families of people with epilepsy feeldisgrace.

Ecuador7 - Social exclusion; altered relationships with spouses/ parents;housing difficulties; employment problems.

Ethiopia8 - Treated as outcasts or “lepers” (showing leprosy to be equallystigmatised).

Kenya9 - Difficulties finding a marriage partner.

Netherlands10- Children have lower school attendance & performance.


Since the 1990s, members of theInternational League Against Epilepsy(ILAE), the International Bureau forEpilepsy (IBE) and representatives ofthe World Health Organisation (WHO)have increasingly recognised theseneeds. In asking themselves how thissituation could be improved, they wereled to working together. This resultedin the collaborative programme of theGlobal Campaign Against Epilepsy,with its aim of bringing epilepsy out ofthe shadows.

The long-term goal of the GlobalCampaign is:

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This goal is worked out in five keyobjectives:

1.To increase public and professionalawareness of epilepsy as auniversal and treatable braindisorder.

Epilepsy can, in many cases, besuccessfully treated by antiepilepticdrugs (AEDs). Despite this, the greatmajority of people with epilepsy indeveloping countries are not receivingappropriate treatment. In fact, manypeople do not know that AEDs exist,and those that do know are oftenunable to obtain them. In developingcountries the “treatment gap” (thedifference between the total number ofpeople with active epilepsy and thenumber of people whose epilepsy isbeing treated, expressed as apercentage) has been recorded at 60-90%9;11.

Much recent knowledge aboutepilepsy is also not being applied forthe benefit of patients Since it isunlikely that there will be enoughspecialist neurologists to providetreatment in most countries, otherhealth professionals will need to betrained to do so.

Awareness about epilepsy isgenerally very low right across theworld. This will often be the case forboth local communities and healthprofessionals. This can often lead topublic discrimination and exclusionof people with epilepsy, as well asinappropriate treatment.

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2.To raise epilepsy to a new plane ofacceptability in the public domain.

3.To promote public and professional education about epilepsy.

4.To identify the needs of peoplewith epilepsy at national andregional levels.

5.To encourage governments anddepartments of health to addressthe needs of people with epilepsyincluding awareness, education,diagnosis, treatment, care, servicesand prevention.

In order to pursue the achievement ofthese five objectives, the GlobalCampaign has adopted a strategy oftwo parallel tracks.These tracks are:· Raising general awareness and

understanding of epilepsy.

· Supporting Departments of Healthin identifying needs and promotingeducation, training, treatment,services, research and preventionnationally.

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In June 1997 the three collaborativepartners (ILAE, IBE and WHO)launched the Global CampaignAgainst Epilepsy. Since 1997 theCampaign’s objectives have beenpursued at national and internationallevels.

Internationally, this has led toconferences in WHO Regions atwhich member states have signed upto improve the treatment of peoplewith epilepsy. Since 1998 fiveDeclarations have been signed inEurope, Africa, Latin America, Asiaand North America.Further conferences and Declarationshave been planned for 2001.

These Declarations, and thecollaborative nature of the GlobalCampaign itself, show thatpartnership is a key aspect of raisingawareness. The Global Campaign isa good working example of apartnership between WHO, ILAE,IBE, governments, agencies from theUnited Nations and other non-governmental organisations, as wellas their national chapters in variouscountries all over the world.


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The Global Campaign is not,however, simply about awareness-raising. Whilst almost every country’sepilepsy services could be improved,the greatest need would appear to bein developing countries. It was,therefore, suggested that in order topractically help and supportDepartments of Health, the GlobalCampaign should developdemonstration projects. These projectsshould help to illustrate good practicein providing epilepsy care.

These projects are being developedalongside Health Departments andwithin the Global Campaign. TheCampaign’s demonstration projectofficers provide advice, validate theprojects’ proposals and monitor theirprogress. If these projects aresuccessful their approach will then bedisseminated to other countries andadopted, where appropriate.Countries are selected fordemonstration projects on the basisof their willingness to participate,availability of a WHO Centre orWHO Country Representative, anILAE and an IBE chapter, as well asan adequate supply of AEDs. Thosecountries currently involved are

Argentina, China, Senegal andZimbabwe. These begin theirimplementation in 2001 and arebeing publicly launched at WHOHeadquarters in Geneva in February2001. Some countries in othergeographical regions are also underconsideration.

External funds will be used to initiatethe demonstration projects, but willnot be used to provide services ordrugs in the long term. This isbecause the provision of anythingbut minimal outside funding is likelyto mean that a project is not locallysustainable.

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The mainstay of epilepsy treatment isAEDs. AEDs try to prevent furtherseizures or to reduce their frequencyand severity. Studies from aroundthe world have shown that up to80% of people developing epilepsymay become free of seizures throughAEDs12. Many of these people mayeventually have their medicationwithdrawn. Other people, however,may have to take AEDs for the rest oftheir lives.

Some people with forms of epilepsy

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which do not respond to AEDs maybe suitable for surgery. However, aswith many of the newer AEDs, thissurgery is often not available indeveloping countries.

Whilst epilepsy affects around 50million people worldwide andtreatment is generally successful, alarge proportion of people remainuntreated in developing countries. InIndia, for example, it is estimatedthat approximately 5 million of the10 million people with epilepsy donot receive any appropriatetreatment. Fig.3 below shows thistreatment gap for various countries.These gaps result from people withepilepsy not being correctly

diagnosed and/or not receivingappropriate treatment11.

In addition to the treatment gap, awide gap exists between the need forAEDs and their availability. Whilstonly 20% of the potential market forAEDs is in developed countries, theyreceive over 80% of the total globalsupply of AEDs. This means thatdeveloping countries receive only 10-20% of AEDs, yet they have agreater need for them.

Whilst the treatment gap isconnected with national andinternational income inequalities andpoverty, the gap is also the result ofa number of other factors andconstraints2. Some of these factorsare listed on the next page:

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Fig.3 Percentage of People withEpilepsy Not Receiving AppropriateTreatment


·Different perceptions aboutepilepsy, which influence people’shealth seeking strategies. Forexample, if epilepsy is not seen asa treatable medical conditionpeople will not seek AEDs fromhealth professionals.

· Lack of prioritisation in healthbudgets. Where governments havelow health budgets, resources areprioritised for conditions perceivedto be more important, such asinfectious diseases.

· Lack of training for healthprofessionals.

· Lack of infrastructure ANDGovernments are often unlikely tobe able to afford to supply thecheapest AEDs.

· Limited supply of AEDs. Themajority of AEDs are used indeveloped countries, despite themajority of people with epilepsyliving in developing countries.

· Limited choice of AEDs.Very few of the newer AEDs aregenerally available. This is partlydue to their cost.

It is these constraints and the veryfact that a treatment gap exists whichhas spurred on the construction ofdemonstration projects. As describedon pages 9-11, identifying andclosing the treatment gap inindividual countries will be the keyobjective and activity for eachproject.


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The Campaign’s Secretariat overseesthe day-to-day running of theCampaign. This involves raisingawareness and ensuring adequatefunding. Management duties for thedemonstration projects have beendelegated to the Scientific ProjectLeader supported by an AssistantScientific Project Leader.

The Project Leader liaises with localILAE and IBE chapters in order to fosterlocal ownership and communityparticipation. his liaison also involvesthe relevant WHO Offices andDepartments of Health. The ProjectLeader is then responsible for helpingto design and evaluate the projects’protocol. An important aspect of theevaluation is ensuring that each projecthas sustainability built into its design.The Project Leader is also responsiblefor monitoring the projects to see howthey are performing, and for writing upthis performance for scientific journals.

Each project will be led locally byPrincipal Investigators. They areresponsible for constructing theproject’s protocol and ensuring that itsimplementation keeps to its budget andtimescales. They are the focal points ofthe Campaign’s relationship with the

project and the people through whominformation will flow. Crucial to theirwork is ensuring that the project meetsits outcome measures. RegionalFacilitators will support them in theirproject’s implementation.

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To support Departments of Health inidentifying needs and promotingeducation, training, treatment,services, research and preventionnationally, the following objectiveshave been set for each demonstrationproject:

1.To reduce the treatment gapand the physical and socialburdenof people with epilepsy byintervention at a community level.

2.To train and educate healthprofessionals.

3.To dispel stigma and promote apositive attitude to people withepilepsy in the community.

4.To identify and assess the potentialfor prevention of epilepsy.

5.To develop models for promotion ofepilepsy control worldwide and forits integration in the health systemsof participating countries.

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In China, village doctors will use adiagnostic questionnaire with thosepeople identified as possibly havingepilepsy. Senior primary health carephysicians will confirm theirdiagnoses. People who areconfirmed to have epilepsy and whoare not receiving regular treatmentwill then be considered for inclusionin the project. Those peopleincluded will receive the AEDphenobarbitone in accordance witha checklist of technical norms.Patients will be educated about theircondition, and possible side-effects,in order to encourage compliancewith their treatment.

3. EducationIncorrect perceptions about epilepsyoften lead to people with epilepsybeing stigmatised. Epilepsy is alsooften neglected in medical training.Therefore, communities’ and healthprofessionals’ awareness aboutepilepsy needs to be raised.

The project in China will ensure thatall physicians and a number ofvillage doctors receive basic epilepsytraining. This will cover:epidemiology, causes, diagnosis andmanagement of epilepsy. Activitiesaimed at decreasing stigma will betargeted at school teachers. Attitudes

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The protocol for the project in China(published by WHO under thereference WHO /MSD/MBD/00.11)was developed in conjunction withthe Ministry of Health of the People’sRepublic of China, the WHORepresentative in Beijing and theBeijing Neurological Institute. Theprotocols for Argentina, Senegal andZimbabwe are developed in similarways. In general terms, each projectwill have three aspects:

1. Case AscertainmentCorrectly identifying people withepilepsy is crucial to establishing theextent of a country’s treatment gapand to ensure that appropriatetreatment is offered to those whoneed it.

In China, for example, around 2.5million people in five selectedprovinces will be part of such astudy. It is estimated that over the fiveyears of the project more than 7,000people with untreated epilepsy willbe identified.

2. An Intervention to ImproveTreatmentIn order to provide appropriatetreatment, activities which ensure thesupply of AEDs and facilitate theiruse in treatment are necessary.


regarding causes of epilepsy andshame associated with the conditionwill be covered. Local advocacyand support groups for people withepilepsy and their families will alsobe encouraged to develop.

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It is expected that the projects will besuccessful and provide suitableapproaches for other countries toadopt. Their success will be seen interms of the following outcomes:

Diminishing the treatment gap.

Reduction in the economic burden ofepilepsy.

Reduction in the individual burden ofepilepsy.

In order to discern whether a projectis meeting these outcomes, itsperformance will be more specificallymeasured using the followingvariables:

1.Population and treatmentcharacteristics (age of onset, sex,education and ethnicity)

2.The treatment (who provided thetreatment, what services wereoffered, etc.)

3.Immediate effects of treatment(such as, on seizures, side-effectsetc.)

4.Functional impact of treatment (onhours of work, training, travelcapability, social activities, etc.)

5.Perceived impact (on relationships,employment, living standards,future plans, etc.)


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Anti-epileptic drugs (AEDs) – medicines used to treat the seizures of people withepilepsy. Phenobarbitone, phenytoin, carbamazepine and sodium valproateare some of the common types of AEDs. The cheapest across the world tends tobe phenobarbitone.

Burden of epilepsy – the extent to which epilepsy impacts people whoexperience the condition. This impact can be felt physically, emotionally,socially, economically, educationally and so on.

Disability Adjusted Life Years (DALYs) – this is a measure which helps to quantifythe burden of particular illnesses. It combines the potential number of life yearslost due to premature death from the illness with the number of years ofproductive life lost due to disability produced by the illness.

Epidemiology – this is the study of the incidence, distribution and determinantsof illnesses with the aim of identifying their causes and working towards theirprevention.

Epilepsy – a malfunction in the brain leading to a temporary change in theelectrical activity of the brain which in turn leads to a seizure. For a diagnosisof epilepsy to be confirmed, seizures need to be unprovoked and recurrent (i.e.not just a single instance).

International Bureau for Epilepsy (IBE) – established in 1961 by members of theILAE, the Bureau aims to improve the quality of life of people with epilepsy. Itdoes so through raising public awareness about epilepsy and the needs ofpeople with epilepsy (particularly relating to the social aspects of epilepsy). Ithas many affiliated chapters (national based IBE organisations) in manycountries.


International League Against Epilepsy (ILAE) – established in 1909, the Leagueis mainly for health professionals. It works to advance scientific and medicalknowledge about epilepsy. It also has many chapters across the world.

Principal Investigator – person responsible for the activities of the demonstrationprojects in each of their countries.

Psychosocial effects of epilepsy – the impact which epilepsy has on peoplewhich goes beyond the experience of the seizures themselves. This includes theway people feel about themselves or problems with education, relationships ormaintaining employment.

Regional Facilitator – the person responsible for helping to establish andmonitor demonstration projects in particular regions. They are required inregions where there is more than one project.

Scientific Project Leader – the person with the overall duties of establishing,advising, monitoring, overseeing and writing-up the demonstration projects.

Seizure – a change in perception or behaviour resulting from abnormalelectrical activity in the brain.

Treatment gap – the difference between the number of people with activeepilepsy (i.e. two or more unprovoked seizures on a different day in theprevious year) and the number of people whose seizures are beingappropriately treated in a given population at a given point in time, expressedas a percentage.


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1.World Health Organisation. Fact sheet 217: The global burden of mental andneurological problems. 1999. Geneva, WHO. 99.

2.Scott RA, Lhatoo SD, Sander JWAS. The treatment of epilepsy in developingcountries and its problems: where do we go from here? Bull World HealthOrgan 2001; In press

3.Watts AE. A model for managing epilepsy in a rural community in Africa.BMJ 1989; 298: 805-807.

4.Temkin O. The Falling Sickness: a history of epilepsy from the Greeks to theBeginnings of Modern Neurology. Baltimore: John Hopkins University Press,1994;

5.Wiebe S, Bellhouse DR, Fallahay C, Eliasziw M. Burden of epilepsy: theOntario health survey. Can J Neurol Sc 1999; 26: 263-270.

6.Kleinman A, Wang WZ, Li SC, et al. The social course of epilepsy: chronicillness as social experience in interior China. Soc Sci Med 1995; 40: 1319-1330.

7.Farmer PJ, Placencia M, Jumbo L, Sander JWAS, Shorvon SD. Effects ofepilepsy on daily functioning in northern Ecuador: summary of findings of apopulation-based research project. Neuroepidemiology 1992; 11: 180-189.

8.Tekle-Haimanot R, Adebe M, Forsgren L, et al. Attitudes of rural people incentral Ethiopia towards epilepsy. Soc Sci Med 1991; 32: 203

9.Shorvon SD, Farmer PJ. Epilepsy in developing countries: a review ofepidemiological, sociocultural and treatment aspects. Epilepsia 1988; 29:S36-S45

10. Boekaerts M, Roder I. Stress, coping and adjustment in children withchronic disease: a review of the literature. Disabil Rehabil 1999; 21: 311-337.

11. Meinardi H, Scott RA, Reis R, Sander JWAS. The treatment gap in epilepsy.Epilepsia 2001; In press

12. Duncan JS. Modern treatment strategies for patients with epilepsy: a review.J Roy Soc Med 1991; 84: 159-162.


InterInterInterInterInternational League Against Epilepsy (ILAE)national League Against Epilepsy (ILAE)national League Against Epilepsy (ILAE)national League Against Epilepsy (ILAE)national League Against Epilepsy (ILAE)Contact for the Global Campaign:E H Reynolds, Centre for Epilepsy, Kings College Hospital, Denmark Hill,London, SE5 9RS, UK, tel: +44 20 7848 5756, fax: +44 20 7848 5530,email: [email protected].

InterInterInterInterInternational Burnational Burnational Burnational Burnational Bureau for Epilepsy (IBE)eau for Epilepsy (IBE)eau for Epilepsy (IBE)eau for Epilepsy (IBE)eau for Epilepsy (IBE)Contact for the Global Campaign:H M de Boer, Stichting Epilepsie Instellingen Nederland, Achterweg 5, 2103SW Heemstede, The Netherlands, tel: +31 23 5 237 418, fax: +31 23 5 470119, email: [email protected].

WWWWWorld Health Ororld Health Ororld Health Ororld Health Ororld Health Organisation (WHO)ganisation (WHO)ganisation (WHO)ganisation (WHO)ganisation (WHO)Contact for the Global Campaign:L L Prilipko, Team for Neurosciences, Department of Mental Health, WorldHealth Organisation, 1211 Geneva 27, Switzerland, tel: +41 22 791 3627,fax: +1 22 791 4160, email: [email protected].

WHO Regional Office for Africa (AFRO), Parirenyatwa Hospital, PO Box BE773, Harare, Zimbabwe, tel: +263 407 733 9244, fax: +263 407 7265062, email: [email protected]

WHO Regional Office for the Americas (PAHO), 525 23rd Street, NWWashington, DC 20037, USA, tel: +1 202 974 3000, fax: +1 202 974 3663

WHO Regional Office for Eastern Mediterranean (EMRO), PO Box 1517,Alexandria – 21511, Egypt, tel: +203 48 202 23/24, fax: +203 48 300 96/97

WHO Regional Office for Europe (EURO), 8 Scherfigswei, DK-2100Copenhagen Æ, Denmark, tel: +45 39 17 17 17, fax: +45 49 17 18 18

WHO Regional Office for South-East Asia (SEARO), World Health House,Indraprastha Estate, Mahatma Gandhi Road, New Delhi 110002, India, tel:+91 11 331 7804/7823, fax: +91 11 332 7972

WHO Regional Office for the Western Pacific (WPRO), PO Box 2932, 1099Manila, Philippines, tel: +632 52 88 001, fax: +632 52 11 036

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