Kaaren Mathias: The lack of access to anti-epileptic drugs in rural India

“He says that anti-seizure medications can have serious side effects. That’s why they can’t be stocked in our community health centre,” reports Jeevan, after returning from meeting the medical officer in charge at a nearby community health centre.

“The block medical officer told me that anti-seizure drugs could be dangerous in the hands of MBBS doctors,” says Pooja, who works in another district. “Even though we showed her the WHO mhGAP guidelines about primary care management of epilepsy.” I scratch my head. Essential medicines. They are essential and are still not where they need to be, on the shelves of people with epilepsy, and in the pharmacies of India’s community health centres (CHCs) and primary health centres (PHCs). “We need to tell Padmi’s story,” says Jeevan.

Padmi’s village is nestled among sugarcane fields. Her mother died two years ago from breast cancer. “I was only 18 years old then. My father worked as an agricultural labourer for big landowners around us.” Raju had been having seizures for many years, sometimes twice a month, sometimes more. “But he really tried hard to treat his “mirgi.” He had been to the government primary health centre and then to see so many different local doctors. Nothing helped. In the last eighteen months he had been taking medicines from an ayurvedic hospital in Rishikesh. They didn’t really stop his seizures either.”

One crisp morning last December, Raju told Padmi that he was going to plant trees by the canal. This time no family member could accompany him. Padmi had to cut grass with a neighbour. Her younger brothers were at school. When she came home with her big bundle of grass there was a big crowd around the house. “My bua (father’s sister) ran over and told me my father had drowned. A neighbour working nearby saw him have a seizure and fall into the canal but by the time he dragged him out it was too late.”

I looked around her small house with its bare walls while Padmi wiped her eyes. “We never got medicines to help my father’s epilepsy. Now he’s dead. After his death I also took down all the pictures of gods that were on our walls. They could not protect the lives of my mother and father so why should I give them any attention?”

The treatment gap for epilepsy in India is 60 – 80% and even higher in rural areas (1, 2). Treatment for epilepsy is rarely provided in government primary health centres or community health centres in North India and yet there are models of effective epilepsy care in rural districts in India that reduce the treatment gap and increase survival. (3, 4)

Padmi’s story of a poor family seeking but failing to find treatment for a common and potentially lethal illness is far too common. Will those in charge lift their heads from their paperwork and see people desperate to access effective care? Will a government capable of sending space missions to Mars, provide anti-seizure medicines and trained primary care doctors to its own citizens with epilepsy? Or should India’s poor just keep waiting for their god’s to save them?

Padmi has given consent for this blog to be published.

Kaaren Mathias is the programme manager for mental health, Emmanuel Hospital Association, India. This blog represents a personal view.

Competing interests: None declared. 

References:
1. World Health Organisation. Mental health atlas 2011. Geneva: WHO, 2011.

2. Tripathi M, Jain DC, Devi MG, et al. Need for a national epilepsy control program. Ann Indian Acad
Neurol 2012;15(2):89-93.

3. Gourie-Devi M, Satishchandra P, Gururaj G. Epilepsy control program in India: a district model.
Epilepsia 2003;44 Suppl 1:58-62.

4. Nizamie SH, Akthar S, Banerjee I, et al. Health care delivery model in epilepsy to reduce treatment
gap: World Health Organization study from a rural tribal population of India. Epilepsy Res
2009;84(2-3):146-52.

  • Victor Patterson

    The juxtapositioning of this with Yogesh Jain’s blog on the same subject (http://blogs.bmj.com/bmj/2015/12/03/yogesh-jain-a-community-based-epilepsy-programme-in-india/) shows two of the sides of untreated epilepsy. First the real problems associated with it – more people die from epilepsy each year than from malaria – and second an innovative solution which uses health workers. There are unlikely ever to be enough doctors to manage untreated epilepsy so health workers will need to take on responsibility for its “medical” as well as its non-medical aspects. The recent statement from the WHO realises this but clearly many doctors still do not.

  • Priya Jain

    There are more problems with epilepsy care than the non-availability of epilepsy drugs.

    Our experience on the Lifeline Express, a hospital on a train, on which an epilepsy team of neurologists and epilepsy educators, hold clinics each month, shows that:

    – Many people with epilepsy stop medication because they have not understood or are not informed that treatment is long term.

    – Access to their medication is often an issue, requiring travel to another town, which means time and money, both of which may not be affordable.

    – Where or who to refer people with epilepsy remains a very serious problem for rural India.

    – Education on treatment (most patients ask us to write out prescriptions in Hindi) is an essential part of epilepsy care.

    – Seizures can kill you. As well as having access to treatment, awareness and education on safety, precautions and first aid is essential.

  • Bridget MacDonald

    There are solutions to getting medication for under treated lethal conditions, they are not as glamorous as space programs but much more humane.
    The epilepsy treatment gap kills people.

  • Janita Keating

    It is a human right to be treated fairly, and this includes having access to essential medications such as AEDs. There will never be enough doctors to manage untreated epilepsy, so putting in place good training and backup via telemedicine for health workers is a model that is working in many parts of the world.

  • Mamta Bhushan Singh

    Epilepsy is still largely untreated in India. It has been known for long, that the reasons for this are multifactorial. Lack of doctors, medicines and awareness, along with poverty, local beliefs and stigma are often listed as being responsible to varying extents. The one thing, which stands out when one meets patients of untreated epilepsy, is the unnecessary and largely avoidable wastage of human life and potential! How can this be allowed to continue?

    During the course of my work over the last decade, I have had the opportunity of meeting thousands of epilepsy patients in small suburbs around Delhi and in more than 50 small Indian towns and villages. The experiences and challenges faced by patients in most of North India, including patients who are in close proximity to the national capitol, are quite similar. Epilepsy patients often remain untreated for decades. Some patients have never ever taken any treatment. Sadly, many others have at some point of time, met a doctor and been prescribed medication. However, they have usually
    discontinued treatment prematurely within a few months or an year or two and gone back to having seizures.

    Patients who have never ever taken treatment are those who have generally never met a doctor who understood epilepsy and had the expertise to treat it. This is understandable because like any other disease, primary care for epilepsy in the Indian context is almost non-existent. Neurologists are very few and only available in a handful of big, metropolitan cities.

    In my opinion, epilepsy patients who discontinue treatment, do it most often because of one of the following two reasons:

    i) Lack of epilepsy literacy amongst patients: Patients mostly have no information about their disease or it’s treatment. Often, after becoming seizure-free, they stop their drugs. If seizures recur, they conclude that the drug was ineffective.

    ii) Non-standardised prescriptions: Cost of treatment is often driven up because of a co-prescription of vitamins, tonics, antioxidants
    etc along with antiepileptic drugs. Many patients can afford monotherapy with a first-line agent. However, needless embellishment of the prescriptions drives cost of treatment beyond poor patients’ reach.

  • Jerome Chin

    There are a myriad of barriers to the diagnosis and treatment of epilepsy in India and many other regions of the world. Epilepsy needs advocates and resources at the national and international levels to break down these barriers.