What is in a name, when it comes to Gorakhpur and its understanding of 'encephalitis’? The answer is, a lot. It wasn't until 2008 when the World Health Organization (WHO) defined acute encephalitis syndrome (AES). But here, Japanese encephalitis (JE) and AES have become synonymous - a flawed understanding that has resulted in a stratified public health care system that is unable to cope with the swiftly changing understanding of the diseases.
The WHO defines the case of AES as a person of any age, at any time of year, who has an acute onset of fever and a change in mental status - with symptoms ranging from confusion, disorientation, coma or the inability to talk. AES have traditionally been attributed to viruses, although research has indicated that other sources ranging from bacteria to parasites can also be causative agents. JE is the most common form of the disease worldwide, with an estimated 15,000 deaths reported annually.
In India, JE has traditionally been the most important cause of AES in our country. However, this has resulted in an overemphasis that has resulted in AES surveillance paralleled to JE surveillance for all practical purposes. But, take 2014 for instance: the total number of AES cases and deaths from India was 10,853 and 1,717 respectively. But for JE, this was, 1,657 and 293. A 2015 study by the King George’s Medical University in Lucknow described AES as a “mixed pot” and said that the 2014 data “implies that other undiscovered or neglected etiology of AES, which accounts for about 85%, also exists and should also be looked for.”
The wide range of causal agent, the rapid neurological impairment means that for doctors on the ground, the implications are fatal. A doctor at the Baba Raghav Das (BRD) Medical College said, “There is a very small window for tertiary centers like ours. But even at primary health care centre, we don’t know what to say to patients and their families. They ask what caused it. The simple answer given is, we don’t know and that means we can’t actually give them specific advice as to how to prevent from it happening again.”
The Rise of AES
Since the first report of the JE virus in Vellore, Tamil Nadu in India in 1955, AES and JE have paralleled each other. In fact, the first outbreak of JE virus reported in Bankura, West Bengal in 1973 also saw sporadic cases of AES and the flare-up led to deaths in India. Before 1975, a very few cases of JE were identified in India, while from 1975 to 1999, more cases of JE virus were reported with frequent outbreaks that led to the development and identification of areas where JE was endemic: the Gangetic plains, parts of the Deccan and Tamil Nadu. But it was after 2000 that there was a dramatic change in the understanding of AES: with a sharp rise in AES cases, which were not caused by the JE virus.
In 2012, AES cases in India shifted towards the JE aetiology - or simply, the emphasis shifted towards cases where the JE virus was the cause. On the basis of the cases reported, the government identified Uttar Pradesh, Bihar, Assam, West Bengal and Tamil Nadu as JE endemic zones.
Moreover, this period also coincided with varying research throwing up new questions that demanded an answer.
In 2012, the National Institute of Virology (NIV) was collected 1,000 samples of Cerebrospinal fluid (CSF) from children admitted at BRD Medical College and was able to identify 100 isolates of organisms called Enteroviruses (EV) - particularly the EV 89 and EV 76 types. This was something that scientists in NIV had been warning off since 2005, but this made it clear that these Enteroviruses spread through contaminated water and triggered symptoms similar to JE. Essentially implying that it wasn’t just mosquito bites that made children sick, but also drinking contaminated water.
Of Litchis and Mites
The same year saw another study, this time by scientists from the US Centers for Disease Control and Prevention arguing for classifying ‘encephalitis’ outbreaks as Acute Neurological Syndrome (ANS) based on the hypothesis that the causal agent was a toxin prevalent in litchi fruit. The joint report with the National Centre for Disease Control (NCDC), under the Union Health Ministry compared the outbreak to ackee fruit poisoning reported in the Caribbean islands and Western Africa. It also added that the correction of low blood glucose in patients has helped reduce mortality from 44 percent in 2013 to 26 percent the next year. The toxin was identified as Methylene cyclopropyl glycine that was found to rise in litchi seeds - although this was discounted almost immediately by the National Research Centre for Litchi (NRCL) in Muzaffarpur, who said numerous studies, has not been able to detect any toxin in the fruit pulp, root, seeds or skins.
Earlier in August this year, researchers from the Indian Council of Medical Research and the BRD Medical College presented new findings as to the cause of AES: a mite, too small to be seen by the naked eye which causes a bacteria leading to scrub typhus. The study said, “Hospital-based surveillance studies indicated that about one-fifth of the patients with acute febrile illness were due to scrub typhus. Further studies are required to identify the etiology of about a third of AES cases that test negative for scrub typhus, JE virus, or dengue.”
In other words, the majority of the AES cases were actually scrub typhus cases - a finding, they argued was key, since the disease can be treated easily if detected at an early stage. This wasn’t the first time such a claim had been made, with studies published as early as 2014 linking scrub typhus to AES. But, there are those who continue to be skeptical.
Dr RN Singh, the doctor to first come across a case of JE and an expert in AES cases said, “The research into scrub typhus just doesn’t make sense. First they said it was accounting for over 60 percent of the cases in 2016. In 2017, they said this was closer to 20 percent. Then they looked at cases in 2018 and found this was closer to 2 percent. I was a part of the Indian Medical Association, when the argument was first presented and I will reiterate what I said then: it doesn’t make sense.”
All of this has translated into an expected confusion on the ground. Uttar Pradesh’s primary health care system is crumbling and nowhere is this more apparent than on the ground. A doctor at the Kushinagar primary health care centre explained the state’s dilemma. “We have not been able to figure out the exact cause, because the government hasn’t really understood the disease that it is trying to treat. It is not one disease which is caused by a particular cause. But you’re fighting a host of different causes that leads to similar symptoms. The focus can’t be reactive, trying to cure a disease but, to try and prevent the conditions leading to it in the first place.”
(This story is part of a News18 series probing the encephalitis menace that hits Gorakhpur every year)
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