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In September 2016, a little known Indian monthly magazine published a cover story 'The Gorakhpur Mystery' written by a Bangalore based Freelancer.
It was a thoroughly researched work that traced the spread of AES (Acute Encephalitis Syndrome) disease in India from the time it was reported first in Tamil Nadu in 1956 to where we are in 2016 and how as a Nation of a billion bright minds failed time and again just to grapple with the reality, let alone preventing the disease from recurring.
Every year 1000s of kids die in India during Monsoon months with some diseases which we loosely bundle into the term AES without the ability to pinpoint the exact nature of the disease and attempt to save the lives of kids by treating them with all possible medicines with a hope that 'something would give' without 'actually' knowing what caused the illness (the reporter calls it 'Blunderbuss approach').
I summarize this excellent (though lengthy) piece of journalism as below:
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Encephalitis is a viral infection that causes brain fever. Mortality is quite high.
Though it is known to us for Sixty years, we are still not able to pinpoint which virus causes what and treat to kill it.
Japanese Encephalitis (JE) was the starting point of the diagnostic. WHO recommended to test for this illness first based on some telltale symptoms and if the result is negative, then test for few other possibilities based on those symptoms before tagging it as AES.
1. Most of the hospitals in India lacked proper diagnostic means for the 'rest' of the possibilities and our medicos simply marked those JE diagnostic failed cases as AES without testing for other possibilities and attempted to 'cure' the patient by trying out almost ALL vaccines at their disposal.
2. Many doctors still do not know how to differentiate Encephalitis from Encephalopathy, a relatively easier disease to treat with low cost medicine, as they miss out to notice some basic symptoms that differentiate these two. They wrongly classify both under AES, treat and watch the kids dying.
3. Clinical diagnostics data is used extensively to analyze outbreaks and to draw (wrong) conclusions. The data collected is inadequate, rudimentary and does not provide any valuable help to medicos. Analysis based on such data often miss out symptoms an expert doctor or a Specialist could have easily picked up and saved the patients from certain death.
From 1995 to 2013, a little town in Bihar would witness AES outbreaks in every summer wherein lot of kids would be taken ill suddenly and many would go to coma and die within 48 hours. Death rate was a high 50 percentage.
Fed up treating them without knowing what was killing them (clinical diagnosis simply marked them as AES patients), a paediatrician in Bihar sent an SOS to a retired infectious disease specialist John Jacob from Vellore, Tamil Nadu.
John reached the town in 2013, went around to gather symptoms of the victims by talking to their family and noted that many of them had symptoms that nullified the possibility of AES; these kids died of liver problem and not brain!. He dug deeper and unearthed a little fact that most of the perished kids ate the bean of a plant grown in that region (edible plant of course).
He got hold of it, analyzed it and found out that it had a plant toxin that caused the fever and death of many kids. He sounded off the govt which went on a 'clearing' drive to root out these plants. Occurrence of AES came down drastically in that region.
Later, in another outbreak region, he again found that a fruit (eaten by many of the perished kids) from Lychee family carried a toxin in the seeds of the fruit. But we don't eat the seeds, said the people there. He then tested the flesh of the Lychee fruit and found traces of that toxin that caused the fever.
His work amply demonstrated that an expert on the field can piece together symptoms (largely missed out by data; most of the data questions are yes/no type - fever y/n, it does not bother about duration of fever which is a very valuable data for a doc) and treat the outbreak as early as possible. Early intervention always reduces fatalities to a great extent.
I would love to quote John here:
“If you knew the antecedents of that problem: fever and rash, you wouldn’t call it Acute Encephalitis Syndrome. You would call it scrub typhus, a disease known all over India. It tells me that the whole thing is a wild goose chase, and nobody knows what the goose looks like,”
There are few more smart people who are spending a great deal of their time trying to pin these outbreak causing viruses and provide effective treatment but they are only handful, not plenty.
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One year later, we celebrated our 70th Independence day and incidentally 70 kids died around the week leading to the ceremony.
Nothing seems to have improved in our fight against this.
In the times of Big data and Analytics based automated systems, Experts and their expertise has become all the more crucial; they still can save lot of lives...
Strangely, the journo who wrote this excellent piece, Dr. Jacob John as well as Mr. Vasanthapuram are not to be heard or seen in the media. Maybe they are on the field, continuing their battle silently...
Nobody has referred to this article in any form of write up so far to ask pertinent questions. The shortfalls pointed out in this article remain the same.
What gives?
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