NEW DELHI: Nearly 95% people with
epilepsy in India don't receive any treatment.
Anti-epileptic drugs aren't available to almost 50% patients in the public sector with less than 40% actually receiving generic medicines instead of the expensive branded ones.
Neurocysticercosis (parasitic disease of the nervous system) is responsible for about 30% of seizure disorders in the Indian subcontinent. Epilepsy is often associated with substantial stigma, with most people with epilepsy less likely to be sent to school, find employment or marry.
Around 14 people per 1,000 population (median lifetime prevalence) are expected to suffer from epilepsy in countries like India with higher estimates in children and young adults, and in rural areas.
These are the findings of a study by
University of Oxford and published in the British medical journal The Lancet on Friday. More than 85% of the global burden of epilepsy occurs in low-income countries including India.
The
World Health Organization says epilepsy accounted for about 0.5% of the global burden of disease or more than 7 million disability-adjusted life-years. Head injury is a common cause of epilepsy worldwide.
The Lancet said epilepsy needed to be brought into the agenda of non-communicable diseases. It was not mentioned in the UN General Assembly meeting in New York to address the global burden of non-communicable diseases, and yet it represents a substantial burden of ill health.
Dr Rakesh Agrawal, an expert on epilepsy from Apollo Hospital, said epilepsy by nature is a controllable disease. According to him, 30% of cases, which are mainly caused by infections in the brain like
tuberculosis, are completely curable while in 60% patients, seizures can be completely controlled.
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What bothers Dr Agrawal is that in rural India, epilepsy faces serious social stigma because of which majority of people don't reach out for treatment. "Epilepsy is quite a serious problem in India. While 60% of people in urban India consult a doctor after suffering a seizure, only 10% in rural India would do so. Also, epilepsy treatment is long term and can take around two years time. Compliance to medications therefore is very poor with only half adhering to the regimen. Once patients are seizure free for a few days, they stop medication until they suffer another episode," Dr Agrawal said.
He added, "The most common cause of epilepsy in the 15-50 age group is neurocysticercosis caused by infected pork or underground vegetables not washed properly. In every 10 patients I see, 5 suffer from neurocysticercosis. However majority of them are treated in 2-3 years time."
The Lancet paper said the number of people with epilepsy in these countries was more than double that in higher-income nations, and more than 60% of people in these regions were not accessing any appropriate epilepsy treatment. The paper highlighted the fact that the burden of epilepsy in these countries including India was under-acknowledged by health agencies, despite the fact that treatment for this disorder was highly cost-effective.
According to lead author, professor Charles Newton of the
department of psychiatry, University of Oxford, "The research shows that the burden of epilepsy in these regions is at least double that found in high-income countries, and sadly, adequate facilities for diagnosis, treatment and ongoing management of epilepsy are virtually non-existent in many of the world's poorest regions. Many people with epilepsy or their families do not even know that they have a disorder that can be controlled with biomedical treatment, so it is vitally important that awareness is raised and medical care improved in these regions."
The authors suggest that the higher incidence of risk factors for epilepsy - such as head trauma, poor neonatal care, and infections such as neurocysticercosis (pork tapeworm) and
onchocerciasis (river
blindness) - are probably responsible for the high numbers of people with epilepsy in these regions.
They went on to suggest that the epilepsy burden could be easily and inexpensively reduced by addressing some of these risk factors.