However, it remains a battle which the government alone cannot win. If eastern UP has to defeat encephalitis, the people and the government have to work together.
Five months have passed since the horror of scores of children dying within hours at a state-run Gorakhpur hospital unfolded in Uttar Pradesh. Many lashed out at the Yogi Adityanath government over the loss of lives and pointed at the inefficiency of the administration. On the other hand, we have numbers revealing a very different story. While there can’t be any excuse for even one life lost, it looks like effective measures are being taken by the people in power.
On 13 August, the newly-elected Chief Minister of the state broke down while talking about the disaster at a hurriedly convened press conference. He had genuine reasons to be pained.
The national media that had thronged the city hours after the news broke, held him guilty and asked just why he could not stop the tragedy.
The deaths were initially blamed on a major administrative lapse in providing ailing infants an uninterrupted supply of life-sustaining oxygen on the intervening night of 10 and 11 August. But everyone was left puzzled as more facts emerged. Despite the supply being restored within hours, the deaths had continued. The controversy had by then taken a hysterical turn with front page headlines of major newspapers revealing appalling statistics that stunned the country: 16 infant deaths in 24 hours, 30 in 48 hours, 71 in the past four days and so on.
The Chief Minister told the media that it was the deadly encephalitis at work, as it has for four decades. He said no one felt the pain of the patients the way he did. “I have seen them die here [at the hospital]. We won’t let it happen anymore,” a teary-eyed Adityanath said. He spoke about steps he had taken to combat the disease within weeks of assuming office and expressed hope that they would yield favourable results soon. But all this was largely lost in the frenzy; his explanation was dismissed as a desperate face-saving exercise. Child rights activists declared the deaths “a massacre”. Opposition demanded his resignation. Editorials writing him off as an incapable administrator, who failed Uttar Pradesh, appeared.
But, lost in the hysteria was perspective.
The tragic truth of Baba Raghav Das Medical College and Hospital is that this disaster plays out in its premises year after year. However mediocre it may be, the 40-year-old hospital is the only hope for critical patients of encephalitis in the 300-km radius of Gorakhpur.
Come June, panic-stricken parents begin to arrive with children clinging to life, some unconscious for hours, some suffering from seizures, some lapsed into coma, some with motor skills lost, others struggling to breathe. The already overburdened hospital descends into total chaos. Doctors squeeze two or even three children into a single bed, scurry to calm the convulsions, hook them to nasal feeding tubes, put them on ventilators, but still lose a third of their infant patients to this annual cycle of disease and death. Distraught parents camped in the hallway are called for formalities and handed over the bodies.
A staggering 10,000 children have died of encephalitis within the hospital’s walls since 1978. It was the year when the epidemic, that hits children below 10 years of age in 85 per cent of the cases, was first documented in eastern Uttar Pradesh.
“Every hour, someone was dying. It was awful,” recalls Dr R N Singh, who was the only resident paediatrician at BRD in 1978. But what he says next sums up the state’s mishandling of the problem in all these years. “It remains awful. This hospital has recorded around 200 deaths per bed. That’s a very sorry statistic.”
No wonder that the staff is conditioned to treat 10-12 deaths a day due to encephalitis as “normal”.
Yet, 2017 was different.
Though vilified as the year when a lot of children died in a badly-run government hospital, it was actually one when many lives were saved.
Data shows that lives lost to encephalitis and its biological cousin Japanese encephalitis (JE) dropped, and dropped sharply in 2017 compared to previous years.
Figures compiled for 20 worst-affected districts in the region show that deaths caused by Acute Encephalitis Syndrome (AES) fell from 592 in 2016 to 552 in 2017. This is despite some 300 more patients showing up at government-run medical centres in 2017, an indication of improved facilities.
In the particularly vulnerable Gorakhpur division, that comprises Adityanath's bastion Gorakhpur along with other districts of Kushinagar, Deorria and Maharajganj, fatality rate of AES saw the sharpest drop in five years. Compared to the previous year when 15 per cent failed to survive, 2017 saw a significant improvement with 12.6 per cent.
The JE story is even more heartening. A remarkably better efficiency is evident in testing for JE virus in 2017. Fatality rate of this mosquito-borne brain infection came down sharply.
In 2016, 2,383 out of 3,396 encephalitis patients were tested for JE virus and 207 were found to be positive. Over 1,000 more patients were tested for JE in 2017 (3,387 out of 3,692, and 366 found to be positive). But while a third of all JE positive patients died in 2016, this dropped to less than a quarter last year. Again in the worst-affected Gorakhpur division, JE received a major blow. In 2017, 18.62 per cent JE patients died compared to 28.91 per cent in 2016.
The government says the numbers are encouraging. “We are on the right path,” Dr Arun Srivastava, Officer on Special Duty to state’s Health Minister Siddarth Nath Singh, said. “We took some measures and it seems they are proving effective.”
Combating encephalitis has evidently been a top agenda for Adityanath, who holds sway over the entire eastern UP. The epidemic hits this laggard and most backward region of an already underdeveloped state with a particular fury. The five-time member of Parliament from Gorakhpur has been raising the issue in parliament since 1998 and made it one of his poll promises in the run up to Uttar Pradesh assembly polls.
Keeping his word, Adityanath acted early and carried out a mass JE vaccination drive in 38 districts from mid-June to mid-July, just before monsoon. Around 88 lakh children were identified. The government claims it achieved its target.
“A drive of this scale was carried out after several years. We procured about one crore vaccines from the central government,” Srivastava said.
The follow up drive for the booster dose will be next carried out in May. “We have scheduled it early in the light of fresh information that it takes two months for the child to build immunity,” he said.
The region’s abundant paddy fields and pigs make it a major hotbed for JE transmission. JE is caused by Culex mosquito that breeds in its water-logged fields during monsoon. Pigs and wading birds act as its natural hosts. The mosquitoes bite infected pigs and eventually humans, thereby transmitting the virus.
The most obvious preventive measure would be to check water-logging, segregate pigs from humans and control mosquito breeding. But it is easier said than done. As high as 63 per cent of the population in some districts is directly involved in agriculture. Relocation of piggeries has always been a vexed issue with successive governments. The caste groups that rear pigs are almost never touched as it’s a bad political move.
Thus the state has primarily depended on vaccination. But most efforts have been marred by poor execution. And other by politics. For instance, in the wake of the 2005 epidemic, Rahul Gandhi landed in Gorakhpur in a helicopter with a fogging machine that would have sprayed chemicals to kill the Culex mosquito, but the then Mulayam Singh Yadav government refused to allow it to be used. The reason? He did not want Congress to 'play politics' with encephalitis. The helicopter remained parked on the Rae Bareli airstrip for days before taken back.
However, the first-ever vaccination drive was organised in 2005 after the Mulayam Singh Yadav-led government came under fire for the region’s worst outbreak – killing 1,344 out of 5,737 affected children. Vaccines were imported from China and given to around 65 lakh children (nearly 35 per cent of all children in UP’s affected areas, which though is a bad number but is still better than coverage in mass immunisation programme at that time). But the government made a big mistake. It failed to administer booster dose the next year. This meant that a largely preventable disease like JE was allowed to rise again. It did, in spurts, from 2007 onwards. Shots were next given only five years later. It was in 2011 that the central government made JE vaccine a part of its universal immunisation programme after enough states complained of the epidemic. But studies have pointed at consistently poor coverage and thus missed opportunities.
It is perhaps because of the special drive last year that JE incidence saw such a sharp drop, say experts. Anirban Basu, professor at the National Brain Research Centre in Manesar who has studied encephalitis for years, recently told a newspaper that the government push on JE vaccination possibly kept the disease under check.
Yet, JE is only a small part of the problem. It triggers no more than 10 per cent of encephalitis cases. What causes the major chunk of the epidemic remains a mystery. It is as much a cause of intrigue for the medical fraternity as headache for the state. Controlling it is a big, big challenge.
But as the numbers above reveal, the state has managed to make some gains in this area last year.
Here’s what the complication is: AES is not a diagnosis, it is merely a clinical term for a wide spectrum of diseases that manifest as brain inflammation. “Familiar illnesses like malaria and chikangunya too get clubbed under AES,” informed Dr Ravindra Kumar Srivastava, chief medical officer of Gorakhpur. Simply put, AES is a huge category of diseases and can be caused by any of the three dozen bugs including various viruses, bacteria and fungi. Even in other AES-hit states like Assam, Bihar and West Bengal, fresh researches keep adding to the list of causative agents – toxic compounds found in litchis in Bihar’s Muzaffarpur district, for instance.
It’s just that when the phenomenon was first studied in the 1980s, the most common pathogen emerged to be the JE virus. It figured in more than a quarter of encephalitis cases prompting researchers to conclude that it is the main cause of the epidemic. So vaccines were brought in. But it so happened that while fewer cases tested positive for JE in successive years, the number of AES cases didn’t fall. On the contrary, it went up.
This is in fact a reason the governments in UP have often offered as an excuse for their incompetence.
Here’s how AES cases typically unfold in the region: The child returns after playing, looking unusually lethargic. Parents detect high fever and make him rest. Within four-five hours, he manifests delirium or disorientation. Villagers call it jhatki but in medical parlance, it’s called ‘an altered mental status’. They take him to the nearest quack, who wastes crucial hours in trying to ward off evil eye. When condition aggravates, the parents rush the child to private practitioners or primary healthcare centres. But many villagers have long lost faith in them. The cases are usually referred to BRD, and so they undertake a long, and often unaffordable journey to Gorakhpur, only to find the overburdened facility stretching to breaking point. Unless lucky to get a bed, they wait in the hallway with the ailing child in arms. In a third of such cases, all this ends up in tragedy.
AES remains undiagnosed in as many as 59 per cent of the patients in the region. It is not curable; only the symptoms can be treated. “Hathiyaar hain, par pata nahin ke maarna kahan hai (we have the weapons, but we don’t know where to hit,” said Dr Ravindra.
The only way then is to arrest the fever’s growth within the first few hours, before it advances to unmanageable proportions. This can happen only when supportive treatment to tide over the symptoms is given quickly. At the block and district level.
It is this situation that the Adityanath government has tried to correct and where a palpable change can be noticed. In 2017, percentage of patients admitted to primary and secondary health centres trebled. Compared to 2016, when only 17 per cent encephalitis patients were treated at primary level forcing the rest to go all the way to Gorakhpur, the number shot up to 56 per cent in 2017.
The government wants to take this figure further up to an ambitious – though not impossible – 80 per cent in 2018, said Dr Srivastava.
Four years ago, the state government had acted on expert advice and set up 104 encephalitis treatment centres (ETCs) in seven districts of eastern UP. But the facilities are marred by neglect and corruption. Pharmacists double up as doctors, while doctors are nowhere to be seen.
“We strengthened these 104 centres to improve facilities. The AES death rate here has been just 3 per cent,” said Dr Srivastava. To improve things in district hospitals, a paediatrician from each district was sent to BRD for a week-long training in AES before monsoon, he added.
Data compiled for Gorakhpur division shows that patients seeking treatment at primary centres doubled in 2017 from the year before.
“The better these primary facilities get, the more lives are saved. It also takes a lot of pressure off us,” said Dr Pushkar Anand, additional director at BRD.
“The transportation system was strengthened and more ambulances made available this time,” he added. The state government says that 238 ambulances of the 108 and 102 services were attached to ETCs for seven districts of Gorakhpur and Basti divisions.
Dr Anand said they are facing a greater challenge in 2018. “We have seen some improvement but it would mean nothing if we can’t maintain it,” he said.
The state government has already brought out a definitive action plan for 2018 to fight encephalitis. It’s a first-of-its-kind initiative with monthly goals and tasks clearly allotted. The thrust is on prevention and prompt treatment.
Continuing the focus on primary centres, paediatric intensive care units in smaller hospitals in nine worst-affected districts in Gorakhpur and Basti divisions will get five more beds each. A three-bed mini paediatric intensive care unit will be set up in 15 ETCs.
There is emphasis on simple measures like telling parents to stop making their children sleep on mud floor and avoid taking kids to paddy fields. To crack the AES mystery, detailed death audits will be carried out to know the symptoms before people succumbed to AES.
There is also a great deal of focus on cleanliness. A major chunk of the plan deals with ways to curb the dirt and smut that abounds in the poverty-stricken region.
The 2018 plan has marked 617 particularly filthy villages as highly sensitive and efforts are on to make them open defecation-free on priority. Residents are being encouraged to install and consume water only from an 'India Mark-2' tap. They are also being told to bathe more often, at least once in a week.
This is because after the JE virus, the biggest trigger for encephalitis is believed to be a polio-like virus called Enterovirus, which spreads through faecal-contaminated water. Open defecation is rampant here, and human and animal excreta often mixes with drinking water. This means that those who escape the menace of mosquitoes, fall prey to the disease thanks to bad quality water.
A number of studies in the past decade have found evidence of Enterovirus infections in AES patients, even though this finding remains debatable. After a 2012 study by the National Institute of Virology found 10 per cent positivity in 1,000 samples, this theory has gained credence and has been considered by the government for various programmes in the past.
Cornered for multiple deaths, Chief Minister Adityanath also blamed poor sanitation for bringing children in droves to the hospital in the first place.
But will this make a dent in queues outside BRD’s encephalitis wards? Some experts say no, arguing that Enterovirus contributes a tiny fraction of cases, and accuse the government of ignoring science and repeating discredited arguments.
The reason is this: Latest studies have discovered a bug that seems to be triggering more encephalitis cases than others. Researchers found the presence of a disease called Scrub Typhus, caused by the bite of mite larvae, in as high as 65 per cent of AES cases. The microscopic larvae bite ill-covered kids roaming barefoot in soil. If the patient gets antibiotics in the early days, it is easily curable. If not, it advances to encephalitis triggering brain inflammation.
At the beginning of 2017 itself, the Indian Council of Medical Research advised the Uttar Pradesh government to give Doxycycline antibiotic to all children with fever for five days. But it looks like the advice fell on deaf years, until the BRD controversy shook the government into acting on it. Dr Ravindra Kumar Srivastava, chief medical officer of Gorakhpur, said Doxycycline and Azithromycin antibiotics were duly given to all such patients from September onwards. In 2018, however, the government plans to use this treatment at the onset of the outbreak itself.
Even though the government seems to be accommodating all theories and taking no chances, experts feel that it should focus on prevention through cleanliness and that it is indeed the best it can do. Dr R N Singh, a long-time campaigner for the eradication of the disease, even rubbished the Scrub Typhus-is-the-mystery-cause theory. “Why did deaths not come down drastically after antibiotics were given?” he asks.
Going by years of experience, Dr Singh suspects Enterovirus to be the cause in 75 per cent of cases. A neurosurgeon at BRD, who did not wish to be named, agreed with Singh. “Why doesn’t this epidemic hit people like you and me? Why are only the poor who live in deplorable conditions, its main victims?"
Indeed, 62 per cent of the victim families are below poverty line, according to the Health Ministry.
Singh’s belief in rooted in a sanitation campaign he ran in a village called Holiya, 23 kilometres from BRD hospital, that he adopted in 2010. Toilets were built, anti-open defecation drives were undertaken, and people were asked to disinfect drinking water such as by keeping it in sun for six-eight hours. According to reports, not a single child fell prey to encephalitis in 2011, 2012 and 2013.
“Yogi has promised every house in UP area will have a toilet by 2018. The Centre too is pushing to stop open-defecation under Swachh Bharat Abhiyan. If substantial part of this promise is fulfilled, it can be a game-changer,” said Singh.