The Hindu : National : ‘Affordable treatment, removing stigma must in tackling epilepsy’

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‘Affordable treatment, removing stigma must in tackling epilepsy’

Special Correspondent

— Photo: R. Ragu

Professor Steven Schachter (right) receives the scroll of honour from Venu Srinivasan (centre), chairman and managing director, Sundaram Clayton Ltd. & TVS Motor Company Ltd. at the 28th T.S. Srinivasan Endowment Oration function on Saturday. Professor Krishnamoorthy Srinivas, founder-chairman, T.S. Srinivasan Centre for Clinical Neurosciences and Health Policy, VHS, is also seen.

CHENNAI: India is in a unique position to show the way forward in optimising quality of life for persons with epilepsy, Steven Schachter, professor of Neurology, Harvard Medical School, and director of Clinical Research, Beth Israel Deaconess Medical Centre, Boston, U.S., has said.

India has the necessary stakeholders and resources to form an alliance of science, technology, business and philanthropists to lead the world in setting up advanced research and public health policies that would look at the medical and psychosocial requirements of people with epilepsy, he said here on Saturday.

Prof. Schachter was delivering the 28th T.S. Srinivasan Endowment Oration in Chennai on “Brainstorms Village-Meeting the Challenge of Disabling Epilepsy.”

India’s role would be significant as it is home to 20 per cent of the global population living with epilepsy. It is estimated that there are at least five lakh new cases every year in the country. While worldwide the majority of persons with epilepsy cannot afford or access appropriate medical care, in India, the estimated treatment gap was tremendous at 70-75 per cent, Prof. Schachter said. That would amount to three times the total number of people with epilepsy in the U.S..

Making treatment available continuously at an affordable cost and monitoring it for efficacy, safety and tolerability was a must. The other challenge would be to address the issue of stigma that isolates people with epilepsy.

In this area, he forecast a huge role for the government. The state must pass laws that would expressly protect, and not restrict, the rights of persons with epilepsy.

It must also promote public health programmes that eradicate the common environmental causes for epilepsy, for instance, making helmets mandatory for two-wheeler riders, as accidents cause brain injury that could lead to seizures.

Prof. Schachter also called for more research in order to understand and resolve every aspect of “disabling epilepsy.” While two in three patients put on anti-epileptic drugs (AED) gain control over their seizures, there are still some who continue to have “difficult-to-control” seizures.

Apart from the seizures, there were debilitating side effects even with the best available treatment — sexual dysfunction, mood disorders, dependency on other people and low self-esteem. The person is unable to live up to his or her full potential because of the medical and psychosocial aspects of epilepsy.

Novel policy

Venu Srinivasan, chairman and managing director, Sundaram Clayton, and TVS Motor Company, said the T.S. Srinivasan National Working Group on Epilepsy established in December 2006, in collaboration with the Indian Epilepsy Association, had developed a novel clinical and health policy. This was further refined as an assessment tool.

Earlier, Mr. Srinivasan presented the T.S. Srinivasan Gold Medal and Scroll, instituted in memory of his father and sponsored by the T.S. Srinivasan Charitable Trust, to Prof. Schachter.

E.S. Krishnamoorthy, director, T.S. Srinivasan Centre for Clinical Neurosciences and Health Policy, Voluntary Health Services, said the aim of the working group was to widen the concept of illness, taking all requirements of the person into consideration. Currently, the government does not list epilepsy among disabilities and the working group attempted to provide policy makers solutions.

N.S. Murali, secretary, VHS Medical Centre, and Krishnamoorthy Srinivas, founder-chairman, T.S. Srinivasan Centre for Clinical Neurosciences and Health Policy, VHS, spoke.

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