Epilepsy Ontario :: International Epilepsy Declaration

Epilepsy Declaration

At a recent meeting in Los Angeles, CA, representatives of the World Health Organization, government ministries, university health faculties, and leaders of professional and lay organizations from across North America unanimously adopted this declaration. [Editor's note: I have replaced the word "patient/s" with "person/people". It's less dehumanizing.]

Approximately 4 million people in North America have epilepsy, the third most common chronic neurological disorder, after dementia and stroke. Since it begins earlier than either and affects people throughout their lives, its effects are particularly devastating.

Persons with epilepsy have an increased risk of serious injury and death;
an estimated 40,000 people per year die due to accidents, status epilepticus, and other consequences of their seizures.
Uncontrolled epilepsy can lead to severe adverse social, psychological, and economic consequences.
Uncontrolled epilepsy in childhood can lead to permanent brain damage and learning impairment.
Seizure disorders are increasingly recognized as a cause of disability among the elderly.
The incidence of epilepsy appears to be increased in socio-economically disadvantaged groups within the population.
Although currently available treatment can control epilepsy in many people, 40 - 50% still have seizures despite optimal therapy.
The cost of epilepsy in the United States alone is at least US$12.5 billion per year.
Advances in neuroscience research hold out the possiblity of a true cure for epilepsy.
With better epilepsy treatment, many additional persons would lead "normal" lives, with economic benefits for the community as well as individuals.
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Yet:

Too many persons [with epilepsy] and health care providers believe that seizures cannot be fully controlled and that people must "live with them".
Funding for research in epilepsy is lower on a per captia basis than that devoted to many other less common and less burdensome neurologic and systemic disorders.
North America has failed to provide adequate access to care for all people with epilepsy.
Socio-economically deprived groups, such as inhabitants of inner cities and indigenous peoples, are particularly neglected.
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We urge action:

to provide uniform access to each country's optimal standard of care, and appropriate treatment including specialized centres of surgery where medically indicated;
to improve training for epilepsy for primary care physicians and other health workers, enabling them to recognize the condition and possibilities for improved treatment;
to provide training and resources to establish regional specialist care facilities where they are not available;
to increase educational efforts for improved understanding of epilepsy among the general public, especially counsellors, teachers, employers, and family members of people with epilepsy, in order to reduce stigma and prejudice associated with epilepsy;
to promote the ongoing systematic collection, analysis and interpretation of health data necessary for implementing and evaluating public health programs related to epilepsy;
to prevent epilepsy based on current as well as emerging knowledge.
to increase basic and clinical research funding for epilepsy, taking advantage of recent advances in neuroscience, not only to treat but also to cure epilepsy.