This year, more than 150 children have died in Bihar’s Muzaffarpur district and adjoining areas so far, owing to Acute Encephalitis Syndrome (AES). The first case of AES was reported in 1995. Since then, children have been dying every year. Umesh Kumar Ray speaks to prominent paediatrician Dr Arun Shah, who has been researching the various aspects of AES for the past three and a half years in Muzaffarpur.
Edited excerpts of the interview:
The number of deaths due to AES had reduced in the last couple of years in Bihar. But this year more than 150 children have died of the disease. Where did the government fail?
The government admits that this time, awareness programmes were not run effectively. This has been due to the fact that the quality of our peripheral (rural) healthcare delivery system is extremely poor. At present, there are 103 primary health centres (PHCs) in Muzaffarpur. They have all received zero ratings in social audits because they lack basic structure. They have neither doctors nor nurses.
The government of India recommends that there should be one PHC per 50,000 people. Considering the population of Muzaffarpur, we ought to increase the number of PHCs from 103 to 170. We also need to improve basic framework and implement it in an effective manner. Additionally, we need to ensure that these PHCs provide better medical services.
Do you think that if the PHCs offered proper treatment, the lives of more children could have been saved?
My guess is that had there been proper arrangements in place at the PHCs, many lives could have been saved. Some children suffering from encephalitis were brought to me at a private hospital. One of them, brought 10 days ago, was unconscious. The nurse told me he had chamki fever. When I checked, I found that his blood sugar level could not be recorded at all as it was below zero. He was immediately given a shot of 10% intravenous dextrose. Within 45 minutes he recovered. He asked for water and ate some biscuits. Within an hour his condition had returned to normal.
If rural health centres had such facilities, children could definitely have been saved. Even government guidelines say that if diseases like these occur in this month, a doctor must check the patient’s blood glucose level with a glucometer and, and if it is found to be low, then he should infuse it with 10% intravenous dextrose to increase the sugar level.
Most of the 150 children died of hypoglycaemia, which is caused by a toxin. When we inject 10% dextrose, it reverses the stalled metabolic process.
Experts say the seeds of the litchi fruit contain the toxin which brings down sugar levels. But nobody eats the seeds…
No, that’s not entirely true. It is not just the seed but the pulp of litchi which also contains the toxin, especially if the fruit is raw and rotten. The parents of the affected children all work in litchi orchards. The children spend most of their time in those orchards and consume litchis that fall on the ground.
But, you see, these kids do not have an option. Visit the villages and look at how and where they live. You’ll find that their condition is extremely pathetic. In such a deplorable conditions, anybody can fall ill. How is litchi to blame when the main culprit is malnutrition? These children are helpless.
What is the reason behind the outbreaks of encephalitis in Muzaffarpur since 1995? Why were no cases reported earlier?
We have seen children die of encephalitis since 1995 and also witnessed the government’s apathy towards it. I have been working here since 1984 and heard very little of this disease between 1984 and 1995.
Actually, what happened was that the media’s reach widened since 1995 and social media also gained strength. This year, 150 children have died but at one point, more than 500 children died of the disease. As many as 400 children died in 2014. Deaths must have occurred prior to 1995 as well, but they were under-reported.
After 1995, the media got empowered and reporting increased. The government also took certain measures after 1995, but only on the tertiary level. It was nothing more than a sham. You needed to find the source of the disease and the source of this disease was poverty, lack of sanitation, malnutrition. All of which needed to be fought against.
You cannot fight the heat or the humidity, but you can fight poverty, malnutrition and lack of sanitation. Why then was a system not formulated to treat the children at the PHC level?
If a child is malnourished but does not consume raw or rotten litchi, can she or he still suffer from AES?
No. Why else would children fall ill only in May and June when malnutrition persists throughout the year? It is because the disease is triggered by raw or rotten litchi in this season. But I do not blame litchi. I blame malnutrition.
Besides litchi, is there a possibility of certain viruses existing in the Muzaffarpur’s air, which become active during May and June and result in the outbreak of the disease?
We have researched this angle as well but did not find evidence for it. All the research studies carried out in this context completely reject the possibility of the presence of a virus. We found in research carried out in 2014 that the children whose blood glucose level was low recovered after they were given a dose of 10% dextrose.
This shows that this is a metabolic dysfunction and not a viral disease. Had it been a viral disease, 10% dextrose would not help. Several teams investigated this, took blood samples of the affected children and conducted research, but none of them found any sort of virus.
What does research carried out since 1995 suggest about AES?
Before 2014, no research studies were done on this disease. All of us were in the dark and making assumptions about it. Some said it was caused by heat stroke, others claimed that it was an infection.
That year, I decided to conduct research on the disease in my own capacity. I felt it was my responsibility to find out why children were dying every year during these months. We started research work independently, without any government fund. There were three people in our team — Dr Jacob John, Mukul Das and me.
Dr Jacob John was the principal researcher and he funded his own research at Muzaffarpur. We started studying all the cases and concluded that all the affected children belonged to poor families. All of them were malnourished. We also found that the outbreak occurs during May and June every year. The blood glucose level of most of the children suffering from AES was found to be extremely low.
An interesting fact we observed during the case study was that the activities of children in 90% of the cases followed a similar pattern. They woke up in the morning and played as usual. Then they accompanied their parents to litchi orchards as the temperature rose. There, they consumed whatever they found. They returned home at night and went to sleep. The symptoms of the disease began to show in all of them between 3 am and 4 am.
This means that a toxin is at work. Upon further study, it was found that the toxin in present in raw, semi-ripe or rotten litchis.
What precaution do we need to take in order to prevent more deaths due to this disease in the future?
When we have identified that the root cause of the disease is malnutrition, we need to work towards its eradication. We need to effectively implement programmes like National Rural Health Mission, mid-day meal, Integrated Child Development Services, public distribution system, Bihar government-run child malnutrition programme and so on, at the grassroots level.
PHCs need to be mobilised. Education on health and nutrition need to imparted to the poor. But the government’s apathy is such that none of these steps are being taken. I have no hesitation in saying that the government is not doing its part.
Has the Bihar government funded any research on this disease?
No research has been conducted by the state government so far, nor has a fund been allocated for it. But the central government did conduct a research in collaboration with an American institute. We carried out our study in 2014. Another parallel research was going on in that year.
A research was conducted by Atlanta’s Centers for Disease Control and Prevention, and the Central government’s National Centre for Disease Control. The findings of this study turned out to be exactly similar to our study.
While our research paper was published in The Lancet in 2014, the joint research paper of the Central government and the American institute was published in 2017. However, the Bihar government had no role in this research.
Although it did not conduct any research, the Bihar government invited Dr Jacob John in 2016 to provide inputs to the standard operating procedures (SOPs) being devised by the state government.
Our inputs to the government were fourfold — to fight malnutrition, to ensure that no child goes to sleep hungry, not to let children eat raw litchi with an empty stomach and to empower the primary health centres.
Calling the AES deaths in Bihar a matter of shame, Prime Minister Narendra Modi had mentioned the Ayushman Bharat scheme. Will the scheme prove effective in fighting the disease?
Ayushman Bharat has nothing to do with encephalitis. Under the scheme, any person who falls sick will receive Rs 5 lakh [as insurance payment] for medical treatment. Union health minister Dr Harshvardhan visited Muzaffarpur and said that Sri Krishna Medical College and Hospital’s 50-bed ward will be expanded to 150 beds. Is this a joke?
It is all right if you want to strengthen the hospital. But when a child falls ill in a village, her or his immediate need is not a hospital but a PHC so that she or he can receive prompt medical attention. The cause of encephalitis is malnutrition and malnutrition will not be eradicated with schemes like Ayushman Bharat.
Can children who recover from encephalitis spend the rest of their lives normally?
No. Many of the children who recover become physically or mentally disabled. The toxin that enters into the blood damages the brain. The brain is the only organ in the entire body that, once damaged, cannot be repaired again.
The body cells can regenerate, but the brain cells, also called neurons, cannot regenerate. Encephalitis can cripple a child, render them mentally disabled or cause blindness.
The government should do more than just offer a compensation of Rs 4 lakh to the victim’s family just for the sake of offering compensation. The matter should be viewed from a humanitarian perspective as well. The government should also look into the conditions of those children who have survived the disease and work towards their comprehensive rehabilitation. It should undertake the responsibility of their treatment.
In an interview, you said that if there is sufficient will, children can be saved from the outbreak of this disease within a year. Please elaborate.
This disease is not so grave that it cannot be prevented. The only condition is for us to work sincerely. Awareness campaigns in rural areas should be accelerated in this season to prevent children from going into litchi orchards. They should not be allowed to eat raw and fallen litchis.
A lengthy and effective programme needs to be formulated to fight malnutrition. Government programmes need to be implemented effectively. The responsibilities of anganwadis as well as PHCs will have to be delineated. It needs to be ensured that the doctors work efficiently in PHCs. If work is carried out quickly at this level, no child will die of this disease in the future.
Work must be done at a large scale to overcome malnutrition. Poverty-stricken people need to be made aware about the various nutritious food items available at the local level which children can be fed.
Meanwhile, employment opportunities need to be provided locally to poor families. If this is done dedicatedly throughout the year, I believe no child will die of encephalitis next year.
Umesh Kumar Ray is an independent journalist.
Translated from the Hindi original by Naushin Rehman.