|
The "Epilepsy: Out of the Shadows" Global Campaign Against Epilepsy is the first truly global attempt to bring epilepsy out into the open. It is a joint initiative by the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy(IBE) and the World Health Organization(WHO).Their joint mission is to improve the acceptability, treatment, services and prevention of epilepsy worldwide.
The Objectives of the Campaign are:
To increase public and professional awareness of epilepsy as a universal treatable 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.
The first phase of the campaign was launched in Geneva, Switzerland in June 1997 and in Dublin, Ireland in July.
In 1999,the Cabinet and Director General of WHO approved the Paper to Cabinet on the Campaign, thus raising the activities under the Campaign to the highest level within the WHO.
The Philippine League Against Epilepsy has just been founded when the campaign was launched. As early as the period of applying for membership to the ILAE lay forums had already been started initially at the Philippine General Hospital in support of the global campaign and are still being conducted on a regular basis, with the sessions improving and becoming more sophisticated each time.
In 2000, 4 PLAE Working Committees were formed to pursue strategies to translate the mission/vision of the organization into reality.
The PLAE acceptance and recognition as the national chapter of the ILAE in the Philippines on Sept. 1999, paved the way to the organization's participation in the Global Campaign Against Epilepsy including regional and global activities.
On November 13,2001 the PLAE participated in the final drafting and formal declaration of the "ASIAN-OCEANIAN DECLARATION ON EPILEPSY.
On April 7, 2001 PLAE participated in the WHO-DOH Celebration of World Health Day in support of the Global Campaign Against Epilepsy, since the theme of the 2001 World Health Day was "mental and brain disorders" with epilepsy identified as one of the priorities. At about this time, the Department of Health issued Administrative Order No. 8 s.2001"The National Mental Health Policy" which include EPILEPSY among the brain disorders as priorities.
The PLAE participation in the World Health Day Celebration, gave media mileage in terms of public information and raising awareness about epilepsy; the DOH started getting inquiries about epilepsy, the Lay Forums started to get more attendance and attention. As the Lay Forums continued, patient's and caregivers started not only to learn more, but also started to ask more questions, not only in terms of medical information, but also about availability of care and services for persons with epilepsy in the country. The issue of the absence of legislation to protect the right of persons with epilepsy in the country was also often raised.
Following a Strategic Planning Conference in October 2000, the PLAE working Committees, have been working very hard to the achievement of outcome measures in pursuit of the objectives set. While pursuing strategies to translate the PLAE mission/vision to reality, it became more obvious that the PLAE and the Global Campaign were going towards the same direction.
In May 2001, national representatives of the different ILAE Chapters participated in a Strategic Planning Conference, and participation and implementation of the campaign in the different countries was discussed. The issue was raised that in some countries, there is no collaboration yet with the corresponding Departments of Health and no government programs to address the needs of persons with epilepsy. The issues of different needs, available resources were also discussed
The Philippine setting is indeed unique, compared to some "developing" countries; despite limited financial resources we have "relatively more" trained and highly qualified health professionals in the field of epilepsy. However, despite the availability of highly qualified health professionals, we have patients who do not seek treatment either 1) because they don't know that" epilepsy can be treated" or that care is available 2) some of those who seek treatment are not properly treated because of inadequate education and training of health care providers 3) and even some of those who get adequate treatment and are "seizure free" are afraid to come out openly about their epilepsy due to fear of the "stigma" and discrimination not only by peers, but discrimination in school and at work, or even the fear of losing their jobs.
These realities which create a "treatment gap" and a 'burden" to our patients, are very important issues that must be addressed, and are basically the same issues which are the focus of the recent 2nd phase launch of the Global Campaign in February this year.
With the increasing global awareness about epilepsy, the increasing activities related to epilepsy in the region, the recent developments related to epilepsy in our country in terms of education, policy and structure it is timely that a National Campaign Against Epilepsy be developed, to address our own needs and work-out solutions based on our existing and available resources.
| 
