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Encephalitis epidemic: Why India’s response is falling apart

Earlier this month, the National Commission for Protection of Child Rights lambasted the Uttar Pradesh government for its ‘casual’ response to the rising death toll from Japanese Encephalitis (JE) and acute encephalitis (AES) in the eastern districts of the state.

This season alone, nearly 400 people have lost their lives to the disease.

The encephalitis outbreak occurs with frightening regularity in India. For decades now, thousands of children from some of the poorest regions of Uttar Pradesh, Bihar and Assam, have succumbed to the disease, although it is preventable.

Why has India failed so miserably to control the epidemic?

Firspost spoke to Manish Kakkar, senior public health specialist at the Public Health Foundation of India (PHFI), on what he makes of the government’s response to the health crisis and what the way forward should be.

Kakkar is part of a team that is conducting a study on acute encephalitis and Japanese encephalitis in Uttar Pradesh’s Kushinagar district. The findings from the study could provide insights into more effective interventions by the government in the region.

Excerpts from the interview:

How grave is the situation of Japanese Encephalitis (JE) in India?

Well, it is an important cause of child mortality in the endemic areas where the disease breaks out every year with high fatality rates. Typically, of every 10 children that suffer from acute encephalitis syndrome (AES), 2-3 will die. And amongst those who survive, another 2-3 will end up with significant neurological damage.
Another point of concern is that the disease seems to be spreading to newer areas. It is a significant problem, especially in these areas. From a public health perspective, there are interventions possible to make it a preventable disease.

Pic used for representational purposes only.

India has faced this epidemic for decades. Over the years, has the situation gotten worse, better or has it been status-quo? How would you assess India’s response to this crisis?

In the larger sense, it is status-quo. There were years when there was a major spike in the number of cases. And then, those cases came down in subsequent years. In 2005, for example, there was a large outbreak. There were interventions put in place, vaccinations rolled out, clinical management improved, inputs given. But again, the cases have started increasing.

What is more troubling is that earlier we were we focusing on JE as the most common specific etiology (cause of the disease) of acute encephalitis. While the ‘reported’ positivity for JE in AES cases has gone down in recent years following JE specific intervention, AES incidence continues to be unresponsive. In other words, the problem now also is that there are more and more cases reported as “unknown etiology AES.”

Unless you know the etiology—whether it is some other vector-borne virus or whether it is a water-borne disease— you cannot guide your intervention.
This has made the situation really complex.

Is the phenomenon of increasing cases of acute encephalitis from unknown causes across states or restricted to parts of eastern Uttar Pradesh?

It is a mainly problem in the Gorakhpur belt, although similar reports of unknown etiology have been received from other endemic areas also. The point is also whether this is the reality or not. We need to look into that. Whether it is a case of unknown etiology or whether there is some problem in the way we are collecting and testing samples needs to be ascertained.
South East Asian countries also face the problem of JE. Very specific local conditions such as expansion of rice fields and the resulting water-logging have been identified as contributing to the outbreak of JE.

In India, what are the specific local conditions that are causing the epidemic?

That is what our study is looking into. The classical local factors— paddy fields, presence of pigs (which is an amplifier host), susceptible population and disease transmitting vector— are all present but they only partly explain the epidemiology of JE in India.

For example, apart from paddy fields, you also require pigs as an amplifier host. What we have observed in our study, from some of our initial enquiries is that there are villages which have pigs but have not reported AES/JE for years, and, at the same, there are villages where there are no pigs but have reported AES/JE cases. It is an intriguing case.

That is what we are trying to investigate in our ongoing study.

It raises questions in terms of what could be some of the other transmission cycles which are maintaining the JE virus. And if these are not JE cases, then what are these due to.
On the other hand, one cannot be oblivious to the health system challenges —both delivery and accessibility—that are unique to these very backward areas. These local factors make a huge difference to the incidence of disease and clinical outcomes.

 Where is the study being conducted?

We are focusing on Kushinagar district, which is next to Gorakhpur in Uttar Pradesh. Historically, Kushinagar has been a highly endemic district for AES/JE cases. Our study sites are located in three blocks in Kushinagar. We have multiple rounds of data collection. We started the first round in July and we’ve just concluded the second round. We’ve also been making some initial visits to understand the health system, community, their behavioural and cultural factors.

What is the situation in Kushinagar?

It has the all the classical factors —pigs, rice-fields.  When we started developing the research protocol, we were under the impression that the pigs were uniformly distributed in the villages. But that is not the case. For every, 3-4 villages, there is one village that has pigs. And it is only certain communities that are rearing pigs. Basically, the picture of Kushinagar defies the classical JE epidemiology in some sense.

How have other countries controlled the JE epidemic? Are there international models we can learn from?

A multi-pronged strategy needs to be put in place that has been followed in countries such as China, Thailand, South Korea, Japan and Sri Lanka.
We need to have a good surveillance system in place which generates good quality data, based on which you can keep monitoring the situation from time to time and base your decisions and interventions.

For example, if 80-90 per cent of AES cases have their lab test results awaited even after one-and-a-half years, how does one decide if it was JE or not. And how does it help decide whether to go for a vector-borne disease control measure or a water-borne disease control measure. For all you know, you might be shooting in the dark, wasting your resources on hypothesized etiology. It is not evidence-based decision making.

Secondly, the specific intervention available is the vaccine. This is significantly grey area from a program implementation perspective. The district administration says that they cover 99 per cent of the children; UNICEF figures are half of that. But when you go to the community it’s a very patchy picture. It is difficult to establish if the children have received vaccine or not. There have also been questions raised on how the vaccine was administered, whether the staff was trained to administer the vaccine, and so on. So while covering the population, it has to be ensured that the technique is right.

The third thing, even with best vaccination coverage – both through campaigns and routine immunization, children will be missed and there will still be vulnerable population. This means that the disease will still occur. The obvious intervention, then, is to have good clinical management protocols in place which works for all-cause AES. And these have to be revisited on a regular basis.  The capacity of the health system to deal with these patients has to be strengthened, which has happened in other settings in addition to the efficient roll out of other strategies.

Another strategy followed in other settings is pig vaccination. This has operational and strategic limitations in Indian context which is why the veterinary sector has not been very receptive to this idea.

Have some states done a better than others in controlling JE? The southern states, for instance.
Generally, better vaccination coverage in these states coupled with better clinical management has contributed to better control. Moreover, the health systems in general perform better in southern states. Some of these endemic northern states have very fragile health systems. At the same time these areas that report JE suffer from abject poverty, with poor accessibility.

There are anecdotal reports that for an AE patient to be transported to the Gorakhpur medical college or the district hospital, it takes Rs 2500. They don’t have RS 2500 to spend on transport alone. With such accessibility issues, you are bound to lose patients.

Do you get the sense that the government has got its act together?

Certainly, government has provisioned for more resources, which include funds for human and material resources. Problem however is not of lack of funds for resources. It is the inability of the system to absorb these resources and make effective use of them. So you may provide funds to a district to set up an ICU facility, but you don’t provide the plan, you don’t provide the training. This disconnect will not allow the change to happen at the ground level

Are you saying the government doesn’t have a plan?

One gets the sense that there is room for a comprehensive and coordinated approach.  It is an evolving plan.

What should be the way ahead? What should the government be doing?

There has to be a strategic, not a reactive plan, that is directed towards acute encephalitis as a problem. That plan seems to be missing. It is part of the general vector-borne disease control programme, so a targetted approach is missing. There were some initial discussions and announcements of a possible national encephalitis programme. One has to look into details of those announcements.

Whatever is the programme, existing or new, one needs to have well thought out strategies that are evidence-based; strategies that will work, given the local context. There needs to be a time-bound action.

It is not only about rolling out interventions. It should start by defining and outlining the problem. Which means that the plan should also identify what the evidence is and where is it lacking. That should be an integral part of any programmatic approach.

Then of course, based on evidence there has to be a systematic planning of the resources and their allocation.

Typically, our oversight mechanism has been very weak, especially on the ground. The monitoring and evaluation of these interventions should be an integral part of it.
In the short-term, is the government doing what needs to be done?
At least, they have deployed all the resources. How effective the deployment is, will be evident from some of the outcomes.

Does the government have a post-recovery plan for patients who recover from the JE?

Nothing of any major consequence. If you are not able to save the patient, post-recovery is a far-flung objective. At least, there is no programme that I am aware of. We don’t even have the figures, we don’t know who these patients are, what is their profile and the neurological deficit they suffer from. I haven’t come across any credible evidence to this effect.

Post recovery, what are the long-term effects of the JE virus?

Many survivors of JE acquire neuropsychiatric sequelae (the consequence of a disease) with cognitive and language impairment, in which case the disease presents itself not only as a killer but also as a cause of an immense social and financial burden. There could be different sorts of manifestation.  For example, the child might show partial paralysis, might be slow on the uptake, might lag behind in studies, and may suffer from speech disturbances.
Most of the time, neither the parents nor the rest of the community understands that this is a result of AES. The problem is not even identified, let alone an intervention to tackle it. Nobody has any idea of its extent and gravity, where it is happening, and who are these children and what is happening to them.

Are the local communities aware of JE and that early treatment could be life-saving?

At this stage, I’m not very confident what the exact picture is. A substantial proportion is aware of mastish jwar (brain fever). They understand that it is a serious disease. But for them the bigger problem is water and sanitation. Therefore, if you start interacting with community leaders, their top most concerns would be diarrhea, chicken pox, measles, and hepatitis. Water is clearly a big problem for them. Everybody talks about it. If you ask them to rank priorities, JE would not be a priority for them.

Is there political will to control JE deaths?
I can’t talk about political will. But the technical machinery wants to make a difference. The only thing is they need to get the right kind of support, both technical and operational.
Allocating resources is one thing, but effectively and efficiently using those resources is a more challenging task. That is where things start falling apart. That is why we need a strategic approach.