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Commission On North American Affairs

Commission Members

Amza Ali, Jamaica
Warren Blume, Canada
Edna Kane Williams, USA
Denise Crepin, Canada
Serge Pierre-Louis, Haiti / USA
Karen Parko, USA

Mission

To advise the ILAE executive on ways to support improvements in the status and treatment of people with epilepsy in North America. Two populations in particular are emphasized: Residents of developing nations within the region, and members of underserved groups within the region's developed economies. In addition we hope to facilitate participation of the North American Region in the Global Campaign.

Goals

  1. To work with the American Epilepsy Society, Epilepsy Foundation, and Epilepsy Canada to raise awareness of the problem of epilepsy in North America
  2. To encourage and assist efforts by bodies such as the National Institutes of Health to address the problems of the treatment gap and stigma faced by many people with epilepsy
  3. To improve the public understanding of the problem of epilepsy and the treatment gap in North America
  4. To increase North American understanding of the world-wide problem of epilepsy.

Summary of Activities for 2001-2002

Meetings

The full commission met in December 2001 in Philadelphia during the American Epilepsy Society Meeting.

Interaction with Other Commissions

We are interacting with the Latin American Commission, particularly its Mexican representatives, who are geographically and economically inhabitants of North America.

NINDS Advisory Panel on Health Disparities in Epilepsy

This panel met in Bethesda, Maryland on 13 November 2002. Funding was provided by the NINDS Office of Health Disparities. AES, ILAE, the Global Campaign, and EF/IBE were represented. The Panel addressed epidemiological, social and economic issues in epilepsy, as well as access to care, including the special problems of women, underserved minorities, inner city populations, and Native Americans. We hope to facilitate issuing RFPs based on the panel's report. Based on the discussions, several potential projects that could become part of the Global Campaign emerged. One would involve a demonstration project on the Navajo Indian Reservation in the "Four Corners" region. A U.S. Public Health Service Neurologist, Karen Parko, provides neurologic care for the approximately 250,000 registered Navaho. She recently received some funding from the U.S. Centers for Disease Control to initiate an epidemiological survey, and is working to get her project approved by the Tribal IRB. There is also the possibility of an urban U.S. project, although this is still in embryonic stages.

Fogarty International Center Stigma Conference

Epilepsy was one of the main topics of this conference, and a Request for Proposals was issued inviting submission of grant applications. Several epilepsy studies were submitted. Funding has not yet been announced.

Global Campaign Activities

One of the Commission members (William Theodore) has been serving as an advisor to the World Health Organisation South East Asian Region, in the development of a project to treat generalized tonic-clonic seizures in that region. Meetings were held in Bangkok in November 2001 and Yangon in September 2002. A training manual, patient screening questionnaire, and treatment protocol using phenobarbital have been developed for the use of rural healthcare workers in the region.

Satellite on Health Disparities and Epilepsy at AES

We are making efforts to arrange a satellite symposium at AES to be devoted to the social and economic aspects of epilepsy, the treatment gap and stigma.

Plans for 2002-2003

We plan to continue working on the projects outlined above. We will work with the NINDS Health Disparities Office to develop the potential epilepsy projects, and to write Requests for Proposals for epilepsy health disparities and stigma research. In addition, we will try to obtain support for a course on health disparities and epilepsy to be held at the American Epilepsy Society meeting.

Updated Summary of Activities for 2002-2003:
NINDS Advisory Panel on Health Disparities in Epilepsy

As a result of the meeting in Bethesda, Maryland on 13 November 2002, the NINDS Health Disparities Office will soon issue a Request for Proposals for epilepsy health disparities and stigma research. Details will be available on the NINDS Website.

Fogarty International Center Stigma Conference

Epilepsy was one of the main topics of this conference, and a Request for Proposals was issued inviting submission of grant applications. Several epilepsy studies were submitted and have been funded.

Recent Developments

We have begun to explore the possibility of writing a North American White Paper on epilepsy.

Change in Organisation

The president, American Epilepsy Society, will become the chair of the commission.

Date: 1 August 2003
Report by: William H. Theodore, outgoing Chair

Note: The North American Affairs Commission is now restructured. The ex-Officio Chair was given to the American Epilepsy Society and the ex-Officio Secretary was given to the Canadian League Against Epilepsy.

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