Three quarters of people living with epilepsy in low-income countries do not get the treatment they need, increasing their risk of dying prematurely and condemning many to a life of stigma.
The findings are published in “Epilepsy, a public health imperative” released today by WHO and leading nongovernmental organizations for epilepsy, the International League Against Epilepsy and the International Bureau for Epilepsy.
“The treatment gap for epilepsy is unacceptably high, when we know that 70% of people with the condition can be seizure-free when they have access to medicines that can cost as little as US$5 per year and can be delivered through primary health systems,” said Dr Tarun Dua, from WHO’s Department of Mental Health and Substance Abuse.
Premature death is three times higher in people with epilepsy
The risk of premature death in people with epilepsy is up to three times higher than for the general population. In low- and middle-income countries, early death among people with epilepsy is significantly higher than in high-income countries. Reasons for this premature mortality in low- and middle-income countries are likely associated with lack of access to health facilities when seizures are long-lasting or occur close together without recovery in between, and preventable causes such as drowning, head injuries and burns.
Roughly half of adults with epilepsy have at least one other health condition. The most common are depression and anxiety: 23% of adults with epilepsy will experience clinical depression during their lifetime and 20% will have anxiety. Mental health conditions such as these can make seizures worse and reduce quality of life. Development and learning difficulties are experienced by 30-40% of children with epilepsy.
Stigma is widespread
Stigma about the condition is also widespread. “The stigma associated with epilepsy is one of the main factors preventing people from seeking treatment,” said Dr Martin Brodie, President of the International Bureau for Epilepsy. “Many children with epilepsy do not go to school and adults are denied work, the right to drive and even to get married. These human rights violations experienced by people with epilepsy need to come to an end.”
Public information campaigns in schools, workplaces, and the broader community to help reduce stigma and the introduction of legislation to prevent discrimination and violations of human rights are also important elements of the public health response.
Treatment for epilepsy can be integrated into primary health services
But the report also shows that when the political will exists, the diagnosis of and treatment for epilepsy can be successfully integrated into primary health services. Pilot programmes introduced in Ghana, Mozambique, Myanmar and Viet Nam as part of WHO’s “Reducing the epilepsy treatment gap” programme have led to a considerable increase in access, such that 6.5 million more people have access to treatment for epilepsy should they need it.
“We know how to reduce the epilepsy treatment gap. Now action to introduce the measures needed to make a difference needs to be accelerated,” said Dr Samuel Wiebe, President of the International League Against Epilepsy. “Ensuring uninterrupted supply of access to antiseizure medicines is one of the highest priorities, as is training of non-specialist health providers working in primary health-care centres.”
25% epilepsy cases can be prevented
Causes of epilepsy include injury around the time of birth, traumatic brain injury, infections of the brain (such as meningitis or encephalitis) and stroke. It is estimated that 25% of cases can be prevented.
Effective interventions for prevention of epilepsy can be delivered as part of broader public health responses in maternal and newborn health care, communicable disease control, injury prevention and cardiovascular health. Screening for pregnancy complications and the presence of trained birth attendants can help prevent injury around the time of birth; immunization against pneumonia and meningitis; malaria control programmes in endemic areas; initiatives to reduce road traffic injuries, violence and falls; and health and community interventions to prevent high blood pressure, diabetes, obesity and tobacco use can all help reduce epilepsy rates.
Epilepsy is one of the most common neurological diseases, affecting nearly 50 million people of all ages around the world. It is a brain disease characterized by abnormal electrical activity causing seizures or unusual behaviour, sensations and sometimes loss of awareness. Epilepsy affects people of all ages, with peaks among children and the over-60s. It has neurological, cognitive, psychological and social consequences.
WHO’s work on mental health and neurological disorders
Brain health is a priority area of work for WHO due to the large burden of death and disability caused by neurological disorders. At the core of our work is the Mental Health Gap Action Programme (mhGAP). Through the mhGAP Programme, non-specialists are trained to provide first-line support for mental, neurological and substance use disorders. WHO provides support to Member States to help them incorporate brain health into relevant policies and plans and to improve management of neurological disorders through models of care integrated into the primary health care system.
International Bureau for Epilepsy (IBE)
The IBE is made up of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. The Bureau addresses social problems such as education, employment, insurance, driving licence restrictions and public awareness. The IBE was established in 1961 and has grown to almost 140 chapters in over 100 countries.
International League Against Epilepsy (ILAE)
The goals of the ILAE are to: advance and disseminate knowledge about epilepsy; promote research, education and training; and improve services and care for patients, especially by prevention, diagnosis and treatment. The League was founded in 1909 and consists of more than 100 national chapters.