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Epigraph Volume 8 Issue 3, Summer 2006

 

FROM THE INFORMATION OFFICER

“ To improve the acceptability, treatment, services and prevention of epilepsy world wide”. That is the mission of the Global Campaign Against Epilepsy, which is perhaps the most important international public campaign ever undertaken by the ILAE. The first article in this issue of Epigraph is a summary of the campaign and its progress from its new ILAE chair Professor Guiliano Avanzini. The campaign has made great strides since its launch, and the article unveils its plans in this its third phase, initiated this year. 

The second article features the ILAE financial management – by the new ILAE Treasurer, Professor Martin Brodie. Sound finances are the bedrock of any international organization, and the current management of ILAE financial affairs is impressive. Over the years, the ILAE has grown. As a historical aside, it is interesting to compare the current position with that in 1937 (when the last ILAE accounts were published in Epilepsia – then Treasurer Tylor Fox reported assets of £28 and a turnover of £36 (About US$3000 at current values)!

Episcope this month features an early paper on Epilepsy and Motoring (what a pity we have lost that elegant phrase which conjures up pictures of open top Bugattis with men in tweeds and goggles). Monrad-Krohn makes recommendations (including the assertion that ‘an epileptic may never be allowed to work as a professional chauffeur’). The article provides an interesting window on epileptology in Norway in the pre-war years.

Other articles include details of the ILAE Regional Congresses and other meetings, a note about the availability of sodium amytal and details of a new staff member at ILAE.

As ever, comments or feedback from any ILAE member would be welcomed by Epigraph, as would news or items of interest on any aspect of epilepsy. Epigraph relies on its readers for information and will consider articles on scientific, clinical or social, human rights and ethical topics.

Simon Shorvon
Editor, Epigraph

 

ILAE-IBE-WHO GLOBAL CAMPAIGN AGAINST EPILEPSY

In 1997, three international organisations, the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) joined forces to initiate a Global Campaign Against Epilepsy (GCAE).  The mission statement of the Campaign is:  “To improve the acceptability, treatment, services and prevention of epilepsy world wide”.

The objectives of the Campaign are:

  • To increase the public and professional awareness of epilepsy as a universal treatable brain disorder
  • To raise epilepsy to a new plane of acceptability in the public domain
  • To promote public and professional education about epilepsy
  • To identify the needs of people with epilepsy on a national and regional basis
  • To encourage governments and departments of health to address the needs of people with epilepsy, including awareness, education, diagnosis, treatment, care, services and prevention

Since September 2005 the GCAE has been chaired by Philip Lee on behalf of IBE and Giuliano Avanzini on behalf of ILAE. The secretariat is established in Heemstede under the responsibility of Hanneke de Boer; the newly appointed Commission on Epilepsy Care will be involved in the further development of the third phase of the Campaign taking into account the inputs that will be provided by ILAE and IBE Chapter members.

I would like to express, also on behalf of my co-chair, our great appreciation for the outstanding work carried out by the previous GCAE chairpersons Jerome Engel Jr. on behalf of ILAE and Hanneke de Boer on behalf of IBE. A special recognition is due to Leonid Prilipko, Programme Leader of Neurology with a special emphasis on epilepsy at WHO from 1986 until his retirement in 2005. His work has greatly contributed to implementing GCAE initiatives in the context of WHO agenda. We are committed to continue their work and, in addition, to develop some new lines of activity that I will comment upon shortly.

The strategy of the GCAE has been to follow two parallel and simultaneous tracks: 1) raising of general awareness and understanding of epilepsy, and 2) supporting Departments of Health in identifying needs and promoting education, training, treatment, services, research and prevention nationally.

The first two phases were mainly devoted to provide a platform for general awareness on epilepsy.  The Campaign was intensified and boosted in the year 2000 by the participation of the Director-General of WHO, WHO Regional Directors and Presidents of relevant NGOs. Actions included the announcement of a Global Awareness Day for Epilepsy; and the organization of regional conferences on public health aspects of epilepsy in the six WHO Regions, including a Declaration on Epilepsy, based on the European model. Information and support was provided for national initiatives under the GCAE and Demonstration Projects (DP) was started. These illustrated good practice in providing services to people with epilepsy and could be used as models of what can be achieved. The ultimate goal of the DPs is the development of 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.

The third phase of the GCAE was launched this year, during which the ongoing actions (namely the demonstration projects on the treatment gap) will be complemented by other initiatives aimed at getting a direct impact on the burden of epilepsy across the world. The following actions are planned:

  • To complete the ongoing and planned DP (Argentina, Brazil, Congo, Kenya, Georgia, China, Djibouti, DPR Korea, India, Indonesia, Maldives, Moldova, Mongolia, Myanmar, Rumania, Sudan, Timot-l’Este, Yemen).
  • To develop regional atlases of epilepsy resources available in individual countries
  • To review the existing legislations relevant to epilepsy and to develop recommendations adequate to promote and protect human rights of people with epilepsy
  • To develop projects on surgery and stigma
  • To develop research plans for multi-centre collaborative studies involving developed and developing countries

The newly appointed ILAE Commission on Epilepsy Care will be involved in the further development of the third phase of the Campaign taking into account the inputs that will be provided by ILAE and IBE Chapter members.

I would like to mention some points that seem to me rather innovative.

Legislation
The right to equal treatment is clearly described in law (UN and Treaty of Amsterdam) and deserves the protection of enforceable legal remedies. However laws impacting the lives of people with epilepsy are outdated and fail to adequately promote and protect human rights or even actively violate rights being based on centuries of stigmatization. Furthermore In many countries legislation is totally absent.   Well crafted legislation which is based on internationally accepted human rights standards can prevent violations and discrimination; promote and protect human rights; enhance the autonomy and liberty of people with epilepsy; and improve equity in access to health care services and community integration. Legislation can serve to legally enforce the goals and objectives of policies and programs related to epilepsy. Within the framework of the GCAE, a project on "epilepsy and legislation" is being planned with the aim of collecting information on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate health care from countries all over the world. This information will be collated in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy.

Projects on Surgery and Stigma
Epilepsy surgery is a safe and effective alternative treatment for a wide variety of epileptic conditions which cannot adequately be treated with antiepileptic drugs. Investment in epilepsy surgery centres, even in the poorest regions, could greatly reduce the economic and human burden of epilepsy. Yet there is a marked treatment gap with respect to epilepsy surgery even in industrialized countries.

80% of the cost of epilepsy is due to patients whose seizures are not controlled with drugs.

80% of the burden of epilepsy is in the developing world.

Most patients with surgically remediable epilepsy can now be diagnosed non-invasively with EEG and MRI.

The major investment for epilepsy surgery is in appropriately trained personnel.

Surgical treatment should, and can, be made available to people who live in developing countries.

In view of the above, the WHO initiated contact with the president of the World Federation of Neurosurgical Societies in order to investigate whether a project on surgery may be feasible, possibly in collaboration with this NGO.

The project on stigma is a continuation of a study started in 2004 thanks to the NIH Fogarty foundation preparatory grant ( TW-03-007) for a pilot project to develop culturally appropriate approaches to reduce stigma and discrimination within the framework of the Campaign. The results of the literature search will guide further developments of the project that will start with ethnographic studies exploring the prevailing beliefs and attitudes to epilepsy in China and Vietnam. Using in-depth interviews and focus groups, data will be gathered from people with epilepsy, their family members, their local communities and their general and specialised health care workers. It is anticipated that study findings will provide insights into the dimensions of epilepsy stigma identifiable in these two countries and highlight the similarities and differences in order to gain an understanding of:

  • Ideas held about epilepsy (explanatory models of causation, treatment, prevention)
  • The impact of these ideas on attitudes towards having epilepsy
  • Ideas and practices relating to its management as a health condition
  • Ideas and practices relating to its management as a potential source of stigma.
  • Research plan For multicentric collaborative ztudies involving developed and developing countries.
  • A number of important aspects of epilepsy research need collaborative studies that involve countries belonging to different parts of the world. Typical examples are epidemiological and genetic studies and clinical trials.

Aims of this activity are:

  • To collect the needs of research from the Regional Commissions and individual regions
  • To stimulate collaborative studies involving countries with different economic situations
  • To develop guidelines and recommendations to facilitate interactions between participants
  • To develop an action plan in the context of the activities of the Commission on Developing Care in consultation with the IBE/ILAE Regional Commissions, Resource and Problem Oriented Commissions, WHO Regional Offices and the Campaign itself.

In developing all GCAE actions, particular attention will be given to the special needs of the different world regions and the Campaign will take advice on these matters from the ILAE, IBE and WHO Regional Commissions and organizations. In addition, we would greatly welcome the input from Chapters or individuals that may help us in improving our activity to the final aim of alleviating the burden of epilepsy all over the world. .

Giuliano Avanzini
ILAE Past President
GCAE Co-chair 

NOTE: On May 5th and 6th in Campinas, Brazil, Dr. Li Li Min and representatives of ILAE, IBE and WHO presented the final results of the Demonstration Project carried out in Brazil from 2003 to 2006 in the frame of the GCAE. The results were so favorable that the Brazilian Health Minister in an official document in Campinas adopted it as a nationwide design for the Brazilian Epilepsy National Plan.

AN UPDATE FROM THE TREASURER

I took over the job of Treasurer of the International League against Epilepsy (ILAE) in August 2005. The Information Officer, Simon Shorvon, thought that this would be a good time for me to summarise our financial structure and update our current situation for chapter members.

ILAE is a non-profit, publicly supported organization incorporated in the United States. As such, the League’s revenue is exempt from federal income tax according to US law. We are required to file an annual tax return that is prepared by Mike Ziebka, a partner in Budwitz & Meyerjack, P.C., Certified Public Accountants, who are based in Farmington, Connecticut. This firm is responsible for conducting an annual audit of our records in accordance with US accounting standards. Mike also works with the Treasurer in an advisory capacity in relation to all financial issues that may arise throughout the year.

The League adopted a new investment policy in 2004 with the assistance of Gary Rooth, Vice President and Senior Investment Management Consultant with Smith Barney Investments in Raleigh, North Carolina. The objective is to maintain a balanced and diversified portfolio that will minimize risk and maximize returns for the League. Our goal is to ensure that the annual income from these investments covers our operating expenses from year to year should the surpluses from Epilepsia and our international congresses dry up. Given the twin threats of open access publishing and shrinkage of the pharmaceutical industry’s commitment to epilepsy, this is not an impossible scenario. Our annual running costs now substantially exceed $1 million. In addition, the work of our Commissions and their funded projects usually extend across the complete 4 year term of each Executive Committee. It would be prudent, therefore, to identify other potential sources of income for the League and tentative plans in this regard are underway. 

ILAE’s Financial Manager, Donna Cunard, works closely with Budwitz & Meyerjack and with the Treasurer. Donna is based at the Financial Office in Hartford, Connecticut, US. She is responsible for maintaining all financial records in preparation for the League’s annual audit. She also assists the Treasurer with budget development and assumes responsibility for the day-to-day management of our operating account. In the past few months Grant Thornton, an Irish accounting firm, has been contracted to be financial administrator for the congress accounts.

Also based in the Hartford office is the League’s Administrative Director, Peter J Berry, CAE, who, in addition to supervising all work undertaken there, oversees the management of the Headquarters staff in Brussels. Peter has over 25 years of experience in association management. He is the liaison for the ILAE officers and organises the agenda for all Management and Executive Committee meetings wherever they take place around the world.

The financial status of the League is sound and, despite the caveats outlined earlier, we are in a good position to pursue an active epilepsy programme. With this in mind, the Executive Committee has identified two areas of particular interest - new projects and regional development. A total of 3% of the total investment portfolio of the League will be dedicated annually over the 2005-2009 term to underwrite these initiatives. Particular emphasis will be placed on proposals relating to education, epilepsy care and translational research.

Given that we have chapters in 96 countries with the expectation of more, it is imperative that we divide the global epilepsy agenda into more manageable groups with similar regional challenges. This process of setting up and developing the work of the Regional Commissions is a priority of this administration. One goal will be to coordinate their activities with the next phase of the Global Campaign against Epilepsy, our successful partnership with the World Health Organisation (WHO) and International Bureau for Epilepsy (IBE). There is a particular need to push forward with the establishment of the African Commission and to assist further with the development of the Latin American and Eastern Mediterranean programmes. A final objective is to define an active agenda for the North American Commission working in partnership with the American Epilepsy Society

I’d like to mention just one more initiative – the solidarity fund. This is composed of contributions donated exclusively for the use of chapters in the developing world requesting assistance with the payment of their annual dues. My personal thanks, therefore, go to the US, German, Swiss, Canadian, Taiwanese and Italian (twice!) chapters for their generous financial support in 2005 and 2006. 

It just remains for me to remind you that I am available to advise on any financial matters relevant to League business (mjb2k@clinmed.gla.ac.uk). As a Scotsman, I can never promise to be generous, but I’ll do my best to support all appropriate projects geared at improving the lives of people with epilepsy. I hope that many of you will contribute some time toward helping the League achieve its objectives.

Martin J Brodie
Treasurer, ILAE  
Glasgow, Scotland

ILAE Launches On-Line Discussion Group

In February, the ILAE launched an on-line Discussion Group for the exclusive use of its members. This internet-based Discussion Group is a communication forum for the exchange of ideas among ILAE members in the field of epilepsy. Participants can post new questions and/or respond to the posts of others, and we encourage discussion topics on any epilepsy related topic (patient care, research, professional issues, job postings etc.).

To use the Discussion Group for the first time, members should log onto the ILAE home page (www.ILAE.org). There is a simple registration process, and the mechanics of the Group are expressly designed so that even those with modest e-mail/internet facilities will have complete and easy access. Instructions for use are found here. Feedback from those who try the site is welcomed. Please direct any comments or questions to Cheryl-Ann Tubby at .

We hope the ILAE Discussion Group becomes an important and widely-used service for the ILAE. It can be informative and fun. Please try and enjoy it!

Log on now

EPISCOPE, A HISTORICAL NOTE

GH Monrad-Krohn.  Epilepsy and Motoring Epilepsia 1939 1: 192-95

This is, to my knowledge, the first published article concerned with the problem of ‘driving and epilepsy’. It fascinated me on two particular counts.

First, is the modernity of Monrad-Krohn’s observations on this topic.  Sixty-seven years later, the issues he raised are still central issues, and the recommendations he made (3 years seizure-freedom, continued medication, declaration from an authorised neurologist etc.) are still very similar to those in place in many countries today.

Second is the light the article throws on social attitude – the doctor as policeman and instrument of social control; issues of patient confidentiality (Monrad-Krohn refers to ‘professional secrecy’); authoritarianism in medicine; the emphasis on lifestyle issues in the control of epilepsy.

The paper is a short and interesting insight into societal control of epilepsy in Europe in the pre-war years.  Click here to access the paper.

AMYTAL

The American Epilepsy Society and the Epilepsy Foundation have learned that Amytal Sodium Injection, an essential drug for administering the WADA test in lateralizing language function prior to brain surgery, is now available to health care professionals. Ranbaxy Pharmaceuticals, the product’s exclusive worldwide manufacturer, has obtained regulatory clearance from the U.S. Food and Drug Administration (FDA) and the U.S. Drug Enforcement Administration (DEA) to begin distribution abroad. Health care professionals needing this product can obtain information by contacting Ranbaxy’s U.S. headquarters via e-mail to the following address: lisa.wilmoth@ranbaxy.com.

ILAE WELCOMES NEW STAFF MEMBER TO BRUSSELS OFFICE

Yael Fattal Lariccia, aged 30 is an Israeli, and lives in Brussels. She fluently speaks Hebrew, French, Italian and English and has a good knowledge of Dutch. Yael holds a master's degree in cultural management from the Université Libre de Bruxelles and a B.A. Mus. Degree in Baroque Flute from The Hight Rubin Academy for Music and Dance in Jerusalem.

She has experience in two Brussels-based associations as an administrative assistant, where she gained experience in accounting, conference organization, database management and meeting organization. Previously, she worked in Rome as a Conference Coordinator for the Association Musica Europa where she was the contact person for daily member requests and international relations.

She started her career in Jerusalem as head of the classical music department at Tower Records, where she was responsible for sales and customer relations.

1ST NORTH AMERICAN REGIONAL EPILEPSY CONGRESS

The International League Against Epilepsy (ILAE) announces the 1st North American Regional Epilepsy Congress.

The Congress is a joint meeting of the American Epilepsy Society (AES) and the Canadian League Against Epilepsy (CLAE) and will replace the AES Annual Meeting for 2006.

The 1st North American Regional Epilepsy Congress is the premiere congress for epilepsy and other seizure disorders. ILAE Regional Congresses are international forums for the exchange of current findings in epilepsy research and treatment. Information is communicated and disseminated through symposia, lectures, scientific exhibitions, poster and platform presentations.

The North American Regional Epilepsy Congress attracts attendees from all over the world and provides educational and networking opportunities for the academic and practicing neurologist, epileptologist, neurophysiologist, neuroscientist, neurosurgeon, internist, pediatrician, pharmacist, nurse, social worker and other professionals.

Information about the 1st North American Regional Epilepsy Congress can be found at www.aesnet.org.

4TH LATIN AMERICAN CONGRESS ON EPILEPSY 6-9 SEPTEMBER 2006

Mayan ruins, a rich colonial history, live volcanoes, wild tropical rainforests and Caribbean tranquillity – Guatemala is a country of stark contrasts and immense beauty. Its capital, Guatemala City, is a lively, bustling metropolis and a melting pot of cultures, customs, traditions and religious beliefs reflecting the multi-ethnic makeup of the country.

Plans are now well underway for the 4th Latin American Congress on Epilepsy, which will take place in Guatemala City from 6-9 September 2006. Jane Whelan has been project managing this event for the past year in cooperation with the Scientific Advisory Committee, and registrations will open in the coming weeks. All logistical planning, programme handling and promotion for the meeting have been the responsibility of the IDM office.

Message from Carlos Acevedo and Juvenal Gutiérrez Moctezuma, Co-Chairs of the Scientific Advisory Committee:

The 4th Latin American Congress on Epilepsy co-organised by the regional committees of the ILAE and IBE, will take place from 6th to the 9th of September 2006 in the Guatemala City. The congress will begin with a pre-congress day of activities on the 6th September, during which a programme will be dedicated to people with epilepsy and their families (with no registration fee) including participants from throughout Latin America. There will also be a morning workshop on 'Basic Aspects of the Epilepsies supported by the ILAE Commission on Education and on Neurobiology', which will be organised by Esper Cavalheiro and Solomon Moshé.

For more information, visit: www.epilepsiaguatemala2006.org or contact guatemala@epilepsycongress.org

6th Asian & Oceanian Epilepsy Congress - 16-19 November, 2006

We are happy to provide details of the exciting scientific program in this announcement. More than 70 regional and international speakers will discuss a range of scientific and clinical topics that are highly relevant to epilepsy practice in the Asian and Oceanian region. The conference will be held in the recently completed Kuala Lumpur Convention Centre. The venue is part of Kuala Lumpur City Centre, which also houses the KLCC Park and the spectacular Petronas Twin Towers. The convention centre has excellent facilities, with the monorail station and many hotels within walking distance. The registration fees will be kept at the previously agreed affordable rates.

For more information, visit: www.epilepsykualalumpur2006.org

EUREPA

Distance learning course on Genetics of epilepsy (III.) - Announcement

EEG in the Diagnosis and Management of Epilepsy - Announcement

www.epilepsy-academy.org

5th International Course on Epilepsy: Surgically Remediable Epilepsies

28 July – 8 August 2006
5th International Course on Epilepsy: Surgically Remediable Epilepsies
Venice International University
San Servolo, Venice, Italy

Announcement
      Information

1st London Colloquium on Status Epilepticus 12-14 April 2007

This is the first of a series of two international colloquia in the area of status epilepticus (the second meeting is scheduled to take place in Innsbruck in 2009). The purpose of the London colloquium is to summarise current knowledge in key research areas and to define future research areas. The important developments in therapy will be highlighted. There is an impressive international faculty of speakers and a comprehensive innovative programme that should appeal to clinicians and scientists interested in epilepsy.  

The meeting is planned will be held at the Institute of Child Health, University College London, under the auspices of the ILAE, University College London (Institutes of Neurology and Child Health) and the Medical University Innsbruck. The meeting will be open to registrants and the poster sessions will be chosen after submission after open advertising.

Poster presentations are also invited from any delegate.

Further details including the programme, faculty, poster-abstract and registration forms and registration details are to be found on:  http://www.conference2k.com/statusconf.asp   

The meeting is supported financially by the ILAE and an unrestricted educational grant from UCB Pharma PLC.

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