People with epilepsy often experience violations and restrictions of both their civil and human rights. Violations such as unequal access to health care, discrimination in the work place and denial of access to education are not uncommon. Legislation based on centuries of stigmatisation existed until recently, or still do in many countries.
Well crafted legislation, based on internationally accepted human rights standards, can prevent discrimination, protect human rights, enhance the autonomy of people with epilepsy, and promote equal access to healthcare services and community integration. Legislation can also serve to enforce the objectives of policies and programmes related to epilepsy.
In 2006 a project on epilepsy and legislation was initiated within the framework of the ILAE/IBE/WHO Global Campaign Against Epilepsy, with the aim to collect information on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and the provision of appropriate health care, from countries all over the world, 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.
During its execution the project serves as a source of information and offers support to IBE and ILAE members involved in the development of anti-discriminatory legislation related to epilepsy. As we all know, epilepsy is not just a health problem, people with epilepsy also have to cope with a wide range of difficulties that affect almost every aspect of their lives. Many of these difficulties are a consequence of misconceptions, prejudice and stigma.
In Colombia, Latin America, a law against discrimination of people with epilepsy is in preparation.
It is estimated that there are 800,000 people with epilepsy in Colombia, but the number of people affected is tenfold, including family members and relatives. Thus it may be said that 20% of the population of Colombia to some degree suffers because of epilepsy.
The aims of the new legislation are:
- To enhance public education on epilepsy, thus decreasing the fear and misconceptions about the disorder in Colombian society;
- To improve diagnosis and treatment of epilepsy by providing diagnostic facilities and modern antiepileptic medication;
- To eliminate discrimination and to improve access to education and employment for people with epilepsy, thus addressing the above mentioned difficulties.
Special action had already been sought in the Declaration on Epilepsy, which was unanimously adopted in Santiago de Chile on 9 September 2000 by delegates from Latin America, the Chilean Government, IBE, ILAE, WHO, UNESCO, UNICEF, and OPS. This called on Latin American Governments, NGOs, all healthcare providers and the general public to join forces in taking both strong and decisive action to meet the objectives of the ILAE/IBE/WHO Global Campaign Against Epilepsy Out of the Shadows.
On 6 March 2008 a National Forum on Anti-discrimination of People with Epilepsy was held in the Colombian Parliament to promote the proposed new legislation. The government plans to organise 10 such Forums on different issues, of which this was the first, to improve communication between the government and the population. There was much interest in this event with national television broadcasting the entire programme live. Speakers at the forum included 3 senators, the Minister of Health, Secretary of Health for the district, members of the Colombian League, Dr Carlos Acevedo from Chile (IBE Vice President and Past President of the Chilean League Against Epilepsy) and myself.
I should also mention here Dr Jaime Fandiño Franky, who prepared the entire programme for the event. Dr Fandiño Franky is also the driving engine, working to improve the quality of life of people with epilepsy in his clinic as well as working to get this new legislation on the agenda of the policy makers of Colombia.
In bringing this legistlation into force, Colombia may become a world leader in the human rights of people with epilepsy, which will then give the country the prestige it would richly deserve. This would be a major step forward in bringing people with epilepsy in Colombia out of the shadows at last.
Report Date: March 2008
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