Hala Sakr joins those working towards breaking the code of silence that has shrouded the sufferers of epilepsy for hundreds of years My first encounter with epilepsy took place when I was 20 years old. Back then, I was a young medical student at Cairo University. Ironically it was not my education that offered the experience. It was life. I was queuing at a bank when an Arab tourist collapsed into a convulsive fit beside me. Never will I forget the fright, embarrassment and frustration that befell the patient and the witnesses. According to the World Health Organisation (WHO), an estimated 50 million people of all ages around the world are affected by epilepsy, with more than 80 per cent living in the developing world. At least four million people with epilepsy live in the Eastern Mediterranean region. Quoting a study conducted at Assuit University, Hassan Hosny, professor of neurology at Cairo University and Secretary-General of the Egyptian Society Against Epilepsy (ESAE), states that Egypt has about 840,000 people with epilepsy. "This means that about one million Egyptian families directly suffer from the various consequences of the condition -- physically, socially and economically," he told Al-Ahram Weekly. Last week Egypt hosted two major events aimed at focusing the world's attention on the plight of the those who suffer from epilepsy. The Inter-Country Meeting on Epilepsy as a Public Health Concern was organised by WHO's Eastern Mediterranean Regional Office (EMRO) in Cairo on 3-4 March and the International Epilepsy Conference was organised by ESAE and held in Sharm El-Sheikh. Abassiya Hospital's Mohamed Ghanem, who is responsible for the mental health file at the Ministry of Health (MOH), believes that such studies do not provide accurate data because they are mainly hospital-based. "MOH is currently preparing for a house-bound, door-to-door study to obtain an accurate estimate of the prevalence of common psychiatric disorders, including epilepsy, in Egypt," he explained. WHO defines epilepsy as a common brain disorder characterised by repeated seizures or fits ranging from the shortest lapse in attention to severe frequent convulsions. Seizures are the outcome of bursts of excessive electric activity in the brain. "Epilepsy is not a contagious disease. What happens is similar to electric short-circuiting that sometimes occurs in our own homes when two wires touch," said Hassan Aziz, the director of the Comprehensive Epilepsy Control Programme in Pakistan. "Hence, the electric current is cut and the seizure occurs. Anti-epileptic medication is like an insulator used to cover the wires to prevent the problem," he told the Weekly. Although convulsive seizures are only one way in which epilepsy manifests itself, it is the most widely known. "It is a frightening condition, both to the patient and the beholders. Most of them do not know what it is, what causes it or what is actually happening. But they do not want to catch it. This is only instinctive," says Philip Lee, president of the International Bureau for Epilepsy (IBE). "What we do not know, we fear," points out Abdel-Aziz Al-Semari, president of Epilepsy Support and Information Centre in Saudi Arabia. "It is still incorrectly believed in our part of the world that epilepsy is caused by supernatural events, that the person is possessed. This we have to fight," he asserts. Lee argues that this perception is prevalent in different cultures and societies. "Ever since the first record of epilepsy in 4000 BC, it has been associated with myths and superstitions," he says. He stresses that the key issue is about knowledge, understanding and acceptance. "Even in our modern and enlightened times, these [knowledge, understanding and acceptance] are very poor in every sphere of society, including the medical profession." Aziz recounted how a patient who studied chemistry at Karachi University asked him about the nature of the illness. "I told him that what actually happens is like an electric storm building up in the brain. But he said: 'No, it is the genie'." Aziz went on to add that no matter how much he explained to his patient, the latter remained adamant. "I was left speechless," said Aziz. Everyone has the potential to develop epilepsy. "Twenty per cent of the normal population experience a seizure at least once in life," says Farouk Koura, the head of the Neurology Department of Cairo University and president of ESAE. "We all have what is called a 'seizure threshold', which is the point at which a trigger will initiate a seizure. That trigger could be as simple as flashing lights or stress, nutrition, alcohol or substance abuse, among many other things." To raise awareness, the Global Campaign Against Epilepsy "Out of the Shadows" was launched in 1997 as a joint initiative of World Health Organisation (WHO) and two international NGOs, the International League Against Epilepsy (ILAE) and the IBE. Its goal is to "provide better information about epilepsy and its consequences and to assist governments and those concerned to reduce the burden of the disorder". Leonid Prilipko, Neurological Disease and Neuroscience Control, WHO, says that "epilepsy has been selected as a priority for WHO not only because it is a serious brain disorder affecting a large population worldwide but also because modern medicine invented an effective treatment which is relatively inexpensive and available. Yet information from many countries, particularly developing countries, show that a good proportion of people with epilepsy are not getting treatment." Within the framework of the global campaign, five of WHO's six regions issued declarations announcing their commitment to the same goal of raising awareness and reducing the burden of the disorder. Along that line, the Inter-Country Meeting on Epilepsy as a Public Health Concern was organised by EMRO last week. It was attended by state representatives, neurologists and mental health experts, as well as concerned organisations. During the meeting the Eastern Mediterranean region formulated its declaration which was announced three days later in Sharm El-Sheikh during the International Epilepsy Conference. Thus, the circle of international commitment is now closed. The declaration explains why epilepsy is a public health issue, what can be done and calls upon different organisations and governments to take meaningful and specific action. "Active steps should be taken, including training, integration of care at all levels of the health system, pushing research forwards and ensuring the availability of essential treatment for those who need it," says Ahmed Mohit, regional advisor for mental health and substance abuse and coordinator of Social Change and Mental Health at EMRO. The vast majority of people with epilepsy live in the developing world. Yet Koura insists that this is merely due to the fact that it is more populated. He brushes away any doubts that the social, economic and perhaps political conditions can play a role. "We found that the general global percentage of two per cent is the same everywhere," he asserts. Giuliano Avanzini, president of ILAE, agrees that "the more condensed population of developing countries is a definite factor causing the huge difference." He added that "perhaps the nature of the causative agent makes a little difference, particularly parasitic infestations, perinatal trauma and infections which are definitely more prevalent in the less developed countries." WHO documents clearly state that "effective actions for prevention of epilepsy are: adequate perinatal care, safe delivery, control of fever in children, control of parasitic diseases and prevention of brain injury such as controlling blood pressure or using safety belts and helmets." "All these factors are closely linked to what we might call 'quality of life' issues, including the quality and accessibility to health care," argues Lee of IBE. Public sanitation, the quality of housing and nutrition as well as health and safety issues at different work-places all have an impact. "Certainly none of the previous are the same in the developed and the developing countries. It is true that the developing world is much more populated but it is also economically poorer," he stresses. Another problem related to epilepsy is the treatment gap. While up to 70 per cent of those newly diagnosed can live seizure-free if treated with the relatively inexpensive existing anti-epileptic drugs, not more than 20 per cent receive treatment. WHO describes such a treatment gap as unacceptably high and a cause of tremendous individual, family, social and economic burdens. "The treatment gap is a good measure of the failure of access to therapy," says Avanzini, who went on to explain that the reasons differ from country to country. "In Latin America and Africa, underdevelopment is a key player. Drugs are not available and on many occasions it is very difficult to access health services," he explains. In other areas, however, under-reporting is responsible. "Some people do not wish to disclose their problem. Others resort to traditional healers. Stigma and discrimination aggravate the situation," he laments. The social implications of epilepsy are immense. This is one condition that touches all aspects of life. Stigma and discrimination dominate social attitudes towards epilepsy. The possibility of marriage, having children and employment, among other things, are all affected. "What is more important is that the social element can even augment the severity of the disease," says Lee. If a person with epilepsy loses his job or fails to find one, he will not be able to support his family. Life becomes much more stressful. Stress is a well-known trigger of seizures. The patient's health deteriorates and the whole situation enters into an endless spiral. "What needs to be brought about is that people with epilepsy are normal human beings in every other way. People with great achievements, such as Alfred Nobel and Fyodor Dostoevsky, had epilepsy," says Aziz. Although Koura believes that the treatment gap in Egypt is only slim due to increased awareness, Ghanem thinks otherwise. "At the present the treatment gap cannot be less than 50 per cent, mainly due to under-reporting," he says. Koura points out that the gravest problem related to epilepsy in Egypt is the interrupted availability of essential medication. "Anti-epileptic drugs must be available continuously. If not, it is better for the patient not to have them at all," he stresses. When people with epilepsy do not receive their medication regularly they enter into what we call "status epilepticus", namely continuous convulsions or loss of consciousness. "This [status epilepticus] can persist for hours without interruption with eventual damage to neurons or heart failure due to exhaustion," he laments. "Classical anti-epileptic drugs are more suited to the economic status of the majority in our part of the world than the new drugs, which are extremely expensive and far beyond our people's means," he says. He calls upon the government to provide anti-epileptic drugs in governmental clinics and universities for nominal prices if not for free. "Those drugs should be kept outside the circle of commercial profit. Decision makers must understand the realities and complexities linked to a condition such as epilepsy. We must always put ourselves in the shoes of those who are suffering," stresses Koura. At present, two anti-epileptic drugs exist on the Egyptian Essential Drug List. The Essential Drug List is a WHO initiative and is part of the Health for All Initiative, one of the requirements of the health package approved in Alma Ata in 1978. The list should cover the basic drugs such as essential antibiotics, analgesics, neuro-psychiatric drugs and anti-hypertensives. "Essential means those drugs which are the minimal necessary requirements for reliable, affordable and sustainable treatment of any medical condition. It is desirable that they are provided either free or for as minimal as possible a price through the public or insurance sectors," says Mohit of EMRO. He believes that no drug list would be complete without essential anti-epileptic drugs. "Only through the provision of essential drugs can we be sure that a minimum of necessary treatment will be available for those who need them and hope for the closure of the treatment gap in areas like epilepsy," he argues. Such considerations eventually brought the issue of the privatisation of health services to the discussions. Al-Semari of Saudi Arabia believes that the Eastern Mediterranean Declaration should have opposed the privatisation of existing public health services at least in this region. "Privatisation will add an economic burden on our patients who have low incomes. It is a threat to all citizens of our region, including Saudi Arabia, despite the more affluent resources and the fact that until now the government is still supporting public health services. Nevertheless, the concept is invading us at all levels," he laments. Yet some people think that privatisation could be the answer to the failure of the existing systems. "This is certainly not true. If health care is changed from secure service to the circle of profit, the chronic element and severity will go on the market as determining factors. Commercial companies will definitely prefer to insure the healthier and the younger rather than the old and the sick. Those will either be insured at higher rates or will not be insured at all." He refers to the experience of Latin American countries, particularly Argentina. "This has been clearly reported in the New England Journal of Medicine in 1999," he affirms. Al-Semari believes that privatisation of existing public health services would be the failure of the last defence line in the battle against poverty. "There is nothing worse than a human being dying because he cannot afford the medication he needs," he says. But what about those who administer the medication? With the extremely low number of specialists currently in the region, the picture seems bleak. Hosny of ESAE says that in Egypt, where there are 400 neurologists and 600 neuro- psychiatrists concentrated in the big cities for a population of around 65 million, things can get out of hand. The only obvious answer is the integration of mental health into the primary health care services. "All medical professionals who might encounter people with epilepsy must be trained to detect and treat the cases within a strong and well-organised referral system," he insists. "Among the first steps should be changing the existing undergraduate neurology curriculum to increase the awareness of the more common neurological disorders such as epilepsy and headaches rather than the less common conditions that would need to be referred to a specialist." In Cairo, two epilepsy clinics will be opened at the Abassiya and Khanka hospitals in a few weeks. Ghanem of MOH points out that psychiatry is now included within the Basic Benefit Package comprising "the minimum basic scientific information that any general practitioner should know". This package is a component of the Primary Health Care Programme adopted by the Egyptian Ministry of Health as part of the health reform programme that started five years ago. Education of school teachers and students who can carry the message home to their families and neighbours can be extremely helpful. "At many times the teacher is the first person to encounter epilepsy at school," says Aziz. "Public awareness and education should be propagated at various levels starting with the general public followed by the patients themselves and finally the doctors. This can only be achieved through the printed press for the educated who can read and the national television for those who cannot," he continues. "When we can help people to understand the truth and facts about epilepsy, I think that we will see people with epilepsy accepted once again. In order to change people's behaviour, they should be given the knowledge and the understanding, and that is what the global campaign is about," says Lee of IBE.
