Regional Declarations and White Papers

Peter Wolf

International League Against Epilepsy

The Regional Declarations on epilepsy are the resultsof a series of regional health political conferences thatmark the transition from the first to the second phase ofthe Global Campaign against Epilepsy. In its earliestphase, the Global Campaign was not well understood bymany of the workers in the field. We were frequentlyasked “What really is the Global Campaign?”, “Whathappens in the Campaign?”, and “What can we expect?”Some people expected that money would be dealt out tothem. My standard answer to these questions, “TheGlobal Campaign is what you do with it,” often helpedvery much to clarify the issue. However, there was thedanger that people who had developed some hopesaround the Campaign could be disappointed by the facts.The Campaign was too distant from people’s lives; itremained too much of an abstraction.

THE EUROPEAN DECLARATION, 1998

The regional health political conferences “Epilepsy asa Public Health Problem,” the first of which for Europewas held in Heidelberg in October 1998, immediatelywere very helpful in this respect. People concerned aboutepilepsy in Heidelberg began to talk with each otherabout the Campaign; there were some theme-centredworking groups, and a goal was set to accept a regionalEpilepsy Declaration.

The Declaration (Appendix 1) followed the exampleof similar papers in other fields of health care (e.g., dia-betes), in which it had been shown that such experthealth political statements could influence politiciansand other relevant people to take a positive attitude to-ward the problem at stake. The Declaration highlightedfive aspects (Table 1).

Action was requested from governments, the Euro-pean Union, and all health care providers, with ninemajor target areas (Table 2). The Declaration is accom-panied by a background note of one page with condensedbasic information (Table 3).

Much enthusiasm was created by the conference andthe Declaration, especially in the countries of EasternEurope, where the need is greatest in Europe and wherecolleagues have taken the Declaration to their govern-ments and never failed to have some positive response.Assisting local professionals, I have personally shownand discussed the Declaration with the Health Ministersof two former Soviet Union countries with the effect thatepilepsy was included in their national health plans.

The momentum created by the European Declaration,together with the support of the pharmaceutical industry,has resulted as planned in the development of a WhitePaper on Epilepsy for Europe (1). On March 22, 2001, itwas launched in the European Parliament in Brussels.With that document, we possess a detailed assessment ofthe problems of epilepsy in our continent and an exten-sion of the Declaration that provides more facts, figures,and goals for those who are working to overcome thepresent neglect of this common disorder.

At least as important, the Heidelberg Conference wasattended by representatives of other regions who all tookthe idea of such health political activity to their part ofthe world and followed it up by organizing similar ac-

Address correspondence and reprint requests to Dr. P. Wolf atEpilepsie-Zentrum Bethel, Klinik fur Anfallskranke, Maraweg 21,4800 Bielefeld, Germany. E-mail: pow@mara.de

TABLE 1. Themes of declaration

The size of the problemThe consequences of epilepsyThe high rate of affliction of children, adolescents, and elderly

personsThe good therapeutic and rehabilitative possibilitiesThe cost of epilepsy and possible savings

TABLE 2. Target areas of declaration

Public understanding and stigmaDiscrimination at the workplacePatient education and empowermentExpertise of healthcare professionalsStandards of diagnosis and treatmentResearchCooperation between governments and nongovernmental

organizationsWhite PaperAssistance for developing countries

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tivities in their own continents. The year 2000 becamethe “Year of the Declarations” when regional confer-ences were organized and Epilepsy Declarations ac-cepted in an additional four regions.

OTHER DECLARATIONS, 2000

By using the model and principles of the EuropeanDeclaration, four other Regional Declarations (Table 4)were launched in 2000 for Africa, Latin America, Asiaand Oceania, and North America, each with its own spe-cific aspects.

Dakar (Senegal)The “African Declaration on Epilepsy” was discussed

in the presence of the Senegalese Minister of Health.Fighting frequent superstitions on the African continent,it highlights that epilepsy is not contagious and notcaused by supernatural influences; it also points to pre-ventable causes such as infectious diseases, head trauma,insufficient perinatal care, and consanguinity, which aremore frequent in Africa. Like all its successors, it ex-pressly requests the establishment of national plans forepilepsy, as we had learned from our experiences withthe European Declaration that in terms of concrete healthpolitics, this is a particularly meaningful and effectiverequest.

Santiago (Chile)The Latin American conference was combined with

the celebration of the 1st “Latin American Epilepsy Day”(September 6), and it was particularly well prepared.Assessments of the problems of epilepsy in 17 LatinAmerican countries were undertaken for the occasion

and included in the Congress publication (2). The “Dec-laration of Santiago on Epilepsy in Latin America”was supported by the regional WHO office, by UNICEFfor Latin America, and the regional office of UNESCO,in addition to the regional commissions of ILAE, IBE,and PAHO. The Declaration was read to the public bythe Chilean Minister of Health in person (3). At thesame time, a Chilean Public Health assessment waspublished as the first step in the development of a Na-tional Plan for Epilepsy in the host country of the Con-ference (4).

New Delhi (India)The “Asian-Oceanian Declaration on Epilepsy” pays

special attention to the quality standard of antiepilepticdrugs (AEDs), which is a specific problem in that part ofthe world. It emphasizes that epilepsy affects individualsand their families irrespective of race, religion, gender,age, or socioeconomic status. The discussions aroundthis Declaration also pointed out that it covers a region solarge that generalizations are more problematic than inother parts of the world. It may be that this Declarationneeds to be followed by “daughter declarations” for thevarious subregions involved.

Los Angeles (United States)The “North American Declaration on Epilepsy,” al-

though finalized in December, has not yet officially beenpublished and launched, but during its preparation, carewas taken to include the non–Spanish-speaking Caribbe-an, which is often forgotten, and other underserved popu-lations like the indigenous Americans.

Thus, the Epilepsy Declarations have much in com-mon, as would be expected, but each one also has itsparticular flavor and pays attention to the particular prob-lems of each region. It has been well understood that theDeclarations are extremely important steps to bring themission of the Global Campaign from the global visionof our Executives to the people working in the field atregional and national levels. However, they will remainpieces of paper that do nothing by themselves unlesspeople grasp them and work with them. We hope they

TABLE 3. Background information

Basic epidemiologic factsSocial consequences, treatment gap, mortalityAppropriate standards of epilepsy care across EuropeLack of national plans for epilepsyDetails of consequences of epilepsyInadequate schoolingHigh rate of unemploymentPeople hide their condition; isolation, helplessness, and

depressionPatients’ ignorance about their condition, (e.g., pregnancy

issues)Consequences of unrecognized epilepsy in elderly peopleProblems with independent mobilityObjectives of the Global Campaign Against Epilepsy

TABLE 4. Regional Declarations

Heidleberg, October 20, 1998“European Declaration on Epilepsy”

Dakar (Senegal), May 6, 2000“African Declaration on Epilepsy”

Santiago (Chile), September 6, 2000“Declaration of Santiago on Epilepsy in Latin America”

New Delhi (India), November 13, 2000“Asian-Oceanian Declaration on Epilepsy”

Los Angeles (U.S.A.), December 1, 2000“North American Declaration on Epilepsy”

APPENDIX 1.

1. European Declaration2. African Declaration3. Latin-American Declaration4. Asian/Oceanian Declaration

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will be followed by White Papers or similar detailedpublic health assessments like those that have been de-veloped in Europe and in Chile and are under way inother places. These again are more developed instru-ments, but still instruments to be used.

Along with the demonstration projects, they are themajor products of phase 1 of the Global Campaign. Itwill be the task of phase 2 to encourage and promote theactions for which these instruments have been devel-oped.

REFERENCES

1. European White Paper on Epilepsy, EUCARE, Brussels, 2001.

2. Devilat M, ed. La epilepsia in Latinoamerica. Epilepsia 2000–Primer Congreso Latinoamericano de Epilepsia. Santiago deChile: Editorial iku, 2000.

3. Bachelet M. Discurso con motivo de la Declaration de Santiagopara la Epilepsia en Latinoamerica. Revista Chilena de Epilepsia2000;1(Suplemento Extraordinario):7–8.

4. Ministerio de Salud, Republica de Chile. Politica y Plan Nacionalpara Epilepsia en Chile. Santiago 2000.

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