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.