By: Dr. Prince Kazadi, Tolu Olaniyan, and Natalie Aswad Boehm, MBA
Dr. Prince Kazadi, is a neurologist and founder of ASLEK, a non-profit helping to provide medical and nutritional resources to families and individuals battling epilepsy.
Tolu Olaniyan, is a registered nurse in the United Kingdom and the CEO of Pretola Global Health and Consulting Limited. She has an undergraduate degree from Southampton University and a Masters in Epilepsy from Kings College London. She is passionate about bridging the awareness and treatment gap of neurological and neurodevelopmental conditions e.g. epilepsy, intellectual disabilities, and autism in African countries.
Natalie Aswad Boehm, MBA is a social entrepreneur and the founder of The Defeating Epilepsy Foundation. Natalie has been battling epilepsy for forty years and advocates for better employment and educational opportunities for individuals with epilepsy as well as better healthcare and treatment.
In 2019, the World Health Organization declared epilepsy as a global health crisis. Epilepsy is a neurological disease that results in abnormal electrical activity in the brain (WHO, 2019). It mainly affects children, adolescents, and the elderly to varying degrees. Epilepsy is one of the most common neurological condition across the world, with about 80% of those with epilepsy live in low -and middle –income countries (LMICs), and do not have access to appropriate treatment (WHO, 2019). Epilepsy continues to be a challenge for many, despite the treatment options that are available. According to the National Institute of Neurological Disorders and Stroke thirty to forty percent of patients have intractable or medication resistant epilepsy (ninds.nih.gov, 2020)
Unfortunately having a diagnosis of epilepsy puts the person at a higher risk of mortality compared to those without the condition. One of the major risks associated with epilepsy is status epilepticus (Epilepsy Action, 2019). In simple terms, status epilepticus is the occurrence of repeated seizures known as cluster seizures or prolonged seizure lasting more than 5 minutes. Status epilepticus can result in irreversible brain damage (Trinka et al, 2015). Status epilepticus is therefore classified as a medical emergency (Seinfeld et al, 2016). Hence the need to proactively prevent the occurrence of seizures or ensure that a seizure is terminated before it develops into status epilepticus to reduce associated risks. There are some medications used to prevent a seizure from developing into status epilepticus. These are known as rescue medication. Rescue medications are generally applied at home and in the community, which in turns prevents hospital admission by stopping seizure activities. Examples of rescue medications are Buccal midazolam, Nasal midazolam, Rectal diazepam, and some benzodiazepines. The exact rescue medication needed is determined by the type of epilepsy the individual experiences and is prescribed by a medical Doctor or Neurologist, accompanied with personalized care plans to aid safe administration of the medication.
In developed countries people with epilepsy have access to these medications. Unfortunately, the opposite of this is the case in LMICs. The lack of availability of these life-saving medications in LMICs such as Democratic Republic of the Congo, Sierra Leone, and Nigeria, means that there is no safe way of terminating prolonged or cluster seizures at home or in the community. People with epilepsy will have to be taken to a hospital during prolonged seizure activities before interventions can occur to stop the seizure activity. This in itself poses certain risks to the individual including risk of permanent brain damage and ultimately, death.
Rescue medications do not take the place of anti-seizure medications that many with epilepsy take daily. They are used to help prevent a seizure or help to stop seizures that are prolonged. For some people battling epilepsy, seizures can affect multiple areas of the brain. For example, patients who have seizure activity in the temporal lobes, experience an “aura” or warning, known to many as a simple focal seizure. People with temporal lobe epilepsy may become extremely happy or frightened which is their aura and know to get somewhere safe in case they lose consciousness or take a prescribed rescue medication as recommended by the responsible clinician. One form of rescue medication used in the United States is Ativan (Lorazepam). Taking Ativan helps the patient to sleep and decreases the chance of any seizure activity taking place. Having rescue medication available for a patient at home is essential. It can prevent the patient from being hospitalized and allows them to recover in the comfort of their home. By providing rescue medication it helps not only in preventing seizures but helps to prevent any further brain damage. Research as shown that repeated seizures in the temporal lobe can result in shrinkage and scarring (sclerosis) in the hippocampus (ninds.nih.gov, 2020). The effect of this is cognitive impairment, or difficulty in learning and remembering material (ninds.nih.gov, 2020). Remembering names, locations, becoming easily confused are just a few examples of memory loss and cognitive impairment. People with epilepsy who experience cognitive impairment, are at higher risk for dementia due to the damage the hippocampus has sustained. They need to make all efforts to prevent seizures in the future to help prevent further damage. Doctors must work with patients to provide the resources needed to make that happen and offer the support required to aid compliance to their treatment plan.
In developed countries such as the United States and the United Kingdom, we are lucky to have access to rescue medications. There are many areas in the world that do not have access to these life-saving resources. In parts of Africa many do not have access to these medications.
In the Democratic Republic of Congo, a case of a patient who has prolonged epileptic seizures, these seizures can be brought under control urgently by the administration of a rescue medication. These drugs are not available in all settings in the DRC, due to their costs and the government’s lack of strategic policy regarding the supply of relief drugs against prolonged seizures.
Due to the lack of emergency medication, the patient is then forced to travel approximately 340 kilometres to obtain the only treatment that is available. ASLEK a non-profit organization that helps individuals with epilepsy in the DRC, works with the patient’s doctor to make epilepsy treatment available. It is important to note that the patient, accompanied by her mother, takes about ten to twelve hours of road travel in the public bus transport, to access the ASLEK treatment center.
For patients who are on site in Lubumbashi city, ASLEK’s head office, the patient can arrive at the treatment center after one or two hours depending on his or her location, but unfortunately ASLEK Association does not have emergency drugs against prolonged seizures because these drugs are too expensive in the DRC, require importation and most are not licensed to be used in LMICs including the DRC.
Comparing the situations in western countries such as the United Kingdom and the United States, versus countries in Africa, establishes the need for the global community to be educated about epilepsy and the necessity of proper care for individuals battling epilepsy. There is an urgent need for pharmaceutical companies to develop the and secure appropriate license of these life-saving medications for 80% of those with epilepsy that live in low-and middle – income countries. This need can no longer be ignored or overlooked. Lack of education along with the stigma that is associated with epilepsy, results in the lack of care leading to unnecessary deaths. Medical professionals along with patients need to work together to gain support for research to help people with epilepsy along with providing quality care and the necessary treatments to help people with epilepsy have a productive life. Until we come together and take the steps to make that happen, situations such as the ones in the Democratic Republic of Congo and other LMICs will continue.
Epilepsy Action (2019) Epilepsy – related deaths and SUDEP https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy (Accessed 14.08.2020)
National Institute of Neurological Disorders and Stroke (2020). The Epilepsies and Seizures: Hope and Research. National Institute of Neurological Disorders and Stroke. Retrieved from: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Epilepsies-and-Seizures-Hope-Through
Seinfeld et al (2016) Status epilepticus. Cold Spring Harb Prospect med 6(3) a022830
Trinka et al (2015) A definition and classification of status epilepticus – report of the ILAE task force on classification of status epilepticus. Epilepsia 56(10), 1515 – 1523
World Health Organisation (2019) Epilepsy: A public health imperative https://www.who.int/mental_health/neurology/epilepsy/report_2019/en/ (Accessed 12.08.2020)