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| Malaria and epilepsy: exposing the knowledge and resource gap | Malaria and epilepsy: exposing the knowledge and resource gap |
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| It is common knowledge that malaria is the major cause of deaths in sub-Saharan Africa, that simple preventative methods like mosquito nets save lives, and that 85% of those who die from malaria are children under 5. In response, billions of dollars have been raised for free medication and awareness raising projects. | It is common knowledge that malaria is the major cause of deaths in sub-Saharan Africa, that simple preventative methods like mosquito nets save lives, and that 85% of those who die from malaria are children under 5. In response, billions of dollars have been raised for free medication and awareness raising projects. |
| So what next? What happens to the children who survive malaria? Most will go home anaemic and a little worn out, but up to one third of children with cerebral malaria will leave hospital with a neurological disability like epilepsy. | So what next? What happens to the children who survive malaria? Most will go home anaemic and a little worn out, but up to one third of children with cerebral malaria will leave hospital with a neurological disability like epilepsy. |
| In the developed world, where a wide range of drugs and support is available, many people with epilepsy achieve reasonable control of their seizures and manage to complete school, have careers, drive cars, have families and so on. Sadly the story is very different in north-west Cameroon. Going home with epilepsy is only the beginning of a life-long nightmare. | In the developed world, where a wide range of drugs and support is available, many people with epilepsy achieve reasonable control of their seizures and manage to complete school, have careers, drive cars, have families and so on. Sadly the story is very different in north-west Cameroon. Going home with epilepsy is only the beginning of a life-long nightmare. |
| Epilepsy is highly stigmatised, many believe it to be a spiritual rather than medical illness. It is also thought to be contagious, transmitted by touching someone during a seizure. So many people with epilepsy suffer fatal or debilitating injuries from falling into open fires or bodies of water, and being abandoned in these dangerous environments during their seizure. You can often spot someone with epilepsy by their numerous wounds and scars. | Epilepsy is highly stigmatised, many believe it to be a spiritual rather than medical illness. It is also thought to be contagious, transmitted by touching someone during a seizure. So many people with epilepsy suffer fatal or debilitating injuries from falling into open fires or bodies of water, and being abandoned in these dangerous environments during their seizure. You can often spot someone with epilepsy by their numerous wounds and scars. |
| Mothers with epilepsy are advised not to breastfeed their children for fear of transmitting the illness. Children with epilepsy are not sent to school, neither are they taught any household tasks for fear that they might contaminate the food they cook or water they fetch. As adults, they find themselves with no independent living skills and terrible self-esteem. For many, the only source of money is to beg. Few marry and many girls are told that having sex with a traditional healer will cure them of their epilepsy. This results in several young single mothers with epilepsy and no means to support themselves or their children. | Mothers with epilepsy are advised not to breastfeed their children for fear of transmitting the illness. Children with epilepsy are not sent to school, neither are they taught any household tasks for fear that they might contaminate the food they cook or water they fetch. As adults, they find themselves with no independent living skills and terrible self-esteem. For many, the only source of money is to beg. Few marry and many girls are told that having sex with a traditional healer will cure them of their epilepsy. This results in several young single mothers with epilepsy and no means to support themselves or their children. |
| Though treatment is available in the region – in the form of three highly effective drugs, phenobarbitone, carbamezipine and sodium valproate – unlike malaria treatment, these drugs are not subsidised. The estimated cost for a year's supply of phenobarbitone is 150CFA (just under £2), carbamazepine 36,000 CFA (£45) and sodium valproate 144,000 (£180). From HIV surveys conducted in the region, we know that the average monthly income of a family in the north-west is 70,000CFA (£88), so while on the face of it, epilepsy treatment (for the cheapest option at least) seems within the reach of most families, those that can afford it are the ones with two working adults. Those who have epilepsy have no income, they have no skills and because of the stigma many employers would not employ them. Medication is a luxury they cannot afford. | Though treatment is available in the region – in the form of three highly effective drugs, phenobarbitone, carbamezipine and sodium valproate – unlike malaria treatment, these drugs are not subsidised. The estimated cost for a year's supply of phenobarbitone is 150CFA (just under £2), carbamazepine 36,000 CFA (£45) and sodium valproate 144,000 (£180). From HIV surveys conducted in the region, we know that the average monthly income of a family in the north-west is 70,000CFA (£88), so while on the face of it, epilepsy treatment (for the cheapest option at least) seems within the reach of most families, those that can afford it are the ones with two working adults. Those who have epilepsy have no income, they have no skills and because of the stigma many employers would not employ them. Medication is a luxury they cannot afford. |
| Adequate diagnosis and accessibility of treatment is another problem. The nearest EEG (electroencephalogram) is a six-hour bus ride away and costs 17,000 CFA (£21). Often patients will opt not to have the investigation and decide to go on a trial of various anticonvulsants instead. With no diagnostic information to guide management, selection of the appropriate antiepileptic drug is difficult and this trial and error approach often results in poor seizure control which frustrates patients and confirms their suspicion that epilepsy cannot be treated by western medicine. | Adequate diagnosis and accessibility of treatment is another problem. The nearest EEG (electroencephalogram) is a six-hour bus ride away and costs 17,000 CFA (£21). Often patients will opt not to have the investigation and decide to go on a trial of various anticonvulsants instead. With no diagnostic information to guide management, selection of the appropriate antiepileptic drug is difficult and this trial and error approach often results in poor seizure control which frustrates patients and confirms their suspicion that epilepsy cannot be treated by western medicine. |
| Treatment itself is available at a few sparsely located health centres and even then the availability of the drugs is interrupted during periods of limited stock, with the larger cities getting priority. It is estimated that only 10% of people living with epilepsy in the north-west are on treatment. The challenge is considerable: over 80% of the world's 50 million people with epilepsy are in the developing world. However the treatment gap (the percentage of people not taking treatment who should be on treatment) is largest in developing countries (up to 90% compared with 10% in high income countries). | Treatment itself is available at a few sparsely located health centres and even then the availability of the drugs is interrupted during periods of limited stock, with the larger cities getting priority. It is estimated that only 10% of people living with epilepsy in the north-west are on treatment. The challenge is considerable: over 80% of the world's 50 million people with epilepsy are in the developing world. However the treatment gap (the percentage of people not taking treatment who should be on treatment) is largest in developing countries (up to 90% compared with 10% in high income countries). |
| We need to start making epilepsy a public health priority now. In order to make a difference, action needs to be taken at several levels. | We need to start making epilepsy a public health priority now. In order to make a difference, action needs to be taken at several levels. |
| Community health | Community health |
| We need more community education programmes that address the stigma and explain the impact of anti-epileptic drugs. We need to empower people living with epilepsy to advocate for better services and government support. We need to work with religious leaders, traditional healers and health care workers and train them to spot people with epilepsy and advise appropriate investigation and treatment. | We need more community education programmes that address the stigma and explain the impact of anti-epileptic drugs. We need to empower people living with epilepsy to advocate for better services and government support. We need to work with religious leaders, traditional healers and health care workers and train them to spot people with epilepsy and advise appropriate investigation and treatment. |
| Academic and public health | Academic and public health |
| We should first establish a community of multidisciplinary professionals with an interest in tackling this problem so we can develop goals and strategies, be accountable to each other and learn from experiences. There are community-based approaches and local government projects in Kenya, India, Malawi and China. We need to work closer with infectious diseases teams to improve the management of central nervous system infections thereby preventing more cases of epilepsy. We also need more open access to clinical research. In August 2012, Lancet Neurology published a paper about a study that reduced the epilepsy treatment gap in a community in Kenya through a series of successful interventions. These are golden nuggets of wisdom which, unfortunately, I and many other health professionals in the developing world cannot access because of subscription rights. | We should first establish a community of multidisciplinary professionals with an interest in tackling this problem so we can develop goals and strategies, be accountable to each other and learn from experiences. There are community-based approaches and local government projects in Kenya, India, Malawi and China. We need to work closer with infectious diseases teams to improve the management of central nervous system infections thereby preventing more cases of epilepsy. We also need more open access to clinical research. In August 2012, Lancet Neurology published a paper about a study that reduced the epilepsy treatment gap in a community in Kenya through a series of successful interventions. These are golden nuggets of wisdom which, unfortunately, I and many other health professionals in the developing world cannot access because of subscription rights. |
| Government policy | Government policy |
| Policies need to be put in place to improve the affordability and availability of drugs. Where government funded schemes are not an option, pressure needs to be put on pharmaceutical companies and development organisations to subsidise the cost of these drugs. | Policies need to be put in place to improve the affordability and availability of drugs. Where government funded schemes are not an option, pressure needs to be put on pharmaceutical companies and development organisations to subsidise the cost of these drugs. |
| The focus on malaria has for so long been on prevention, never extended to helping those who have survived malaria – with or without complications. Yet as we get better at diagnosing and treating malaria this problem will only grow: less children will die, more will survive and more may go home with epilepsy. Already the number of people with epilepsy in developing countries is more than twice that in high income countries. | The focus on malaria has for so long been on prevention, never extended to helping those who have survived malaria – with or without complications. Yet as we get better at diagnosing and treating malaria this problem will only grow: less children will die, more will survive and more may go home with epilepsy. Already the number of people with epilepsy in developing countries is more than twice that in high income countries. |
| As the developed world raises awareness on 'Purple Day' on 26 March, we need to start thinking about how we can improve the lives of people living with epilepsy in the developing world. | As the developed world raises awareness on 'Purple Day' on 26 March, we need to start thinking about how we can improve the lives of people living with epilepsy in the developing world. |
| I met a young filmmaker in Cameroon, who grew up seeing a family member suffer with epilepsy. This compelled him to make a documentary about the lives of those living with epilepsy. He hopes this will start an international conversation and create pressure on pharmaceuticals and governments to make treatment for this condition more accessible. | I met a young filmmaker in Cameroon, who grew up seeing a family member suffer with epilepsy. This compelled him to make a documentary about the lives of those living with epilepsy. He hopes this will start an international conversation and create pressure on pharmaceuticals and governments to make treatment for this condition more accessible. |
| Dr Tamara Bugembe is a general paediatric registrar. She is currently volunteering in Cameroon on a VSO/RCPCH fellowship. Her blog Africanchildhealth.com collates and organises current paediatric research involving or relating to African children. She is also on Twitter: @tbugembe. | Dr Tamara Bugembe is a general paediatric registrar. She is currently volunteering in Cameroon on a VSO/RCPCH fellowship. Her blog Africanchildhealth.com collates and organises current paediatric research involving or relating to African children. She is also on Twitter: @tbugembe. |
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