The deadly encephalitis or Acute Encephalitis Syndrome (AES), which is known to hit eastern Uttar Pradesh every year with a fury, is said to have claimed a staggering 10,000 lives (some accounts even claim 25,000) within the walls of Gorakhpur’s Baba Raghav Das (BRD) Medical College and Hospital alone since 1978.
That was the year when the disease was first documented in the region. AES is a clinical term for a wide spectrum of diseases that manifest as brain inflammation and affects children below 10 years of age in 85 per cent of the cases.
The 40-year-old BRD hospital caters to — in fact, it is the only hope for — critical patients of AES in the 300-km radius of Gorakhpur.
A look at the fresh data provided by the hospital however suggests nothing short of a miracle.
Figures for the last three years show that deaths from encephalitis have come down sharply in two years. The data includes patients at BRD from about 20 worst-affected districts of east UP along with Bihar and Nepal as well as patients at Gorakhpur division’s six district hospitals and about 300 primary and community health centres (PHCs and CHCs).
The Gorakhpur division comprises four districts — Adityanath's bastion Gorakhpur along with Kushinagar, Deoria and Maharajganj. Though there cannot be an excuse for even one life lost, the figures (in Table 1) tell a heartwarming story.
In 2018 — the year that first saw the execution of UP Chief Minister Yogi Adityanath’s definitive action plan to combat encephalitis — the occurrence of the disease dropped by more than half compared to the previous year. This year is likely to see an even bigger drop.
Casualties have come down steeply. In two years, deaths from AES in all the mentioned facilities put together have dropped by more than 65 per cent – a claim recently echoed by Adityanath in a rally.
Dr Mahima Mittal, head of the Pediatrics department at BRD, told Swarajya, “This is the peak of the encephalitis season but we are witnessing far fewer patients compared to previous years.”
Here’s some more data for perspective (for the four districts of Gorakhpur division):
As once can see, the numbers have been growing every year so far. In 2018 however, they show a drop.
Inside The Encephalitis Ward In BRD
A month ago, the eldest seven-year-old son of Ramnivas and Gauri Devi returned home with mild fever. The parents tried to treat him at home but within days, he began to vomit continuously.
They went to the nearest medical store and, on the store manager’s advice, bought LAN 15 capsules that are used in the treatment of acidity-related disorders of the stomach.
The vomiting stopped but soon the boy began to show signs of what villagers call ‘jhatki’ and doctors call ‘altered mental status’.
“He would roll his eyes and could no longer walk on his own,” says Gauri. Her husband, who is mute, repairs motorcycles for a living. Two weeks back, the couple made the 60 kilometre journey from their Nautan Hathiagarh village in Deoria district to Gorakhpur’s BRD.
With her child sleeping on a bed in the encephalitis ward, Gauri says, “He has improved a lot. He even talks to us now. However, he still cannot walk.”
A first-year MD (doctorate of medicine) student at BRD, who is filling a patient form, asks her, “Why did not you not go to a PHC?”
Gauri says, “Hamein kya pata? [what do we know?]”
The doctor asks, “Can you show me the vaccination certificate of this child?”
Gauri repeats, “Ye sab hamein kya pata? [what do we know of all this?]”
The doctor turns to me: “You see, despite the best efforts in vaccination and awareness, they remain ignorant.”
As per government records, Deoria has two district hospitals and about 100 PHCs and CHCs.
To Gauri, the doctor says, “Do you have anybody educated at home? Ask them to send the vaccination details on WhatsApp as soon as they can.”
A nurse enters and gives two injections to the child, who has been diagnosed with AES owing to symptoms of mental disorientation. The boy is one of the 173 AES patients at BRD this year, 30 of whom have not survived.
On 26 August when I visited, the child was the only AES patient in the ward.
Back in her room, Dr Mittal informs that such cases where patients come straight to BRD after visiting quacks, are steadily coming down. “Many patients are now referred from primary or district level centres,” she says.
Outside the ward, Arshad Ansari is sitting on the floor with his family. His three-year-old son is admitted and is undergoing tests. A tailor by profession, Ansari has come from Amahawa Khas village in Maharajganj district, some 100 kilometres away.
It started with mild fever that turned to vomiting within days. Soon, the boy stopped responding to his parents’ calls and grew too weak to sit on his own. The district hospital in Nautanwa block referred him to BRD.
“The facilities have improved a great deal,” says Arshad, who had visited this hospital some years ago for his mother’s treatment and had been disappointed then. This time, he got a bed for his child easily.
As per a senior authority at BRD, who did not wish to be quoted on this, the government has spent a whopping Rs 100 crore in improving the facilities at BRD under its action plan.
Last year, the hospital got a 71-bed wing equipped with ventilators and a PICU (pediatric intensive care unit), and a neonatal ICU with 78 radiant warmers.
Dr Mittal informs that the paediatric ward now has around 500 beds.
“Critical care equipment has increased. Manpower has gone up a lot; we have 100 more nurses now. Faculty has increased. And importantly, the government is now fully bearing the cost of the patients’ consumables, that is, their medicines, food and tests,” she says.
The improved infrastructure is said to have significantly brought down the mortality rate at BRD. For a long time, a third of all encephalitis patients admitted in BRD would lose the battle with the disease.
In 2017, the mortality rate was an improvement at 15 per cent; it was largely credited to a mass JE vaccination drive in 38 districts in east UP just before the monsoon, targeting 88 lakh children. In 2018, the mortality rate was 11 per cent. This year, till August, it has been 9 per cent.
At the same time, the number of patients coming to BRD has dropped significantly, which means that a major burden has been taken off the critical care facility. (See Table 2.)
This year looks like a game changer when more patients have been treated at primary centres than at BRD. The figures for this year (till August 22) are 115, 89 and 122 respectively. Simply put, while the occurrence of the disease is going down with every passing year, more patients are getting treated at the primary level.
This is as per the plan. The government wants the disease to be arrested at the primary level – which is the only way to combat it.
And here’s why: Typically, AES remains undiagnosed in as many as 59 per cent cases (as per the literature in the government's action plan). It is not curable; only the symptoms can be treated.
The only way 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 local level.
Dr V K Srivastava, nodal health officer for encephalitis in the Gorakhpur division, says that the government is even providing free transportation from local centres to BRD, if needed.
Inside The Villages – Visits To Local Health Centres
The community health centre at Hata block in Kushinagar district, which caters to 80 villages, recently got a new three-bed, ventilator-equipped PICU — one of the 12 PICUs and mini PICUs set up in the Gorakhpur division under the action plan.
Resident pediatrician, Dr Lal Babu Yadav, says it’s proved to be a crucial facility and 26 patients have used it so far. The centre has an encephalitis treatment centre (ETC) in operation since the time of the previous government.
Dr Yadav himself is a new appointee at the centre; he has studied and worked at BRD for many years. He looks at the records and informs that last year, the centre had treated 22 cases of AES.
This year, only eight cases have come to him so far. There has been no death. “Awareness on sanitation has played a huge role,” he says.
Geeta Singh has come from 10-kilometre away, from Dumari Sawangi Patti village with her eight-year-old daughter, who is feverish. She says that in the past, her family never considered a CHC worth visiting and had preferred a private practitioner.
But this time, she heeded the repeated advice of the ASHA workers (Accredited Social Health Activist or simply, community health workers, mostly women). “The centre has improved a lot,” she says.
Nearby, a man in his 40s who has come with a severe stomach ache, complains that “all the focus is on children with fever” now. “They [the doctors] did not carry out tests on me and sent me away two days ago,” he rues.
At another CHC in Kasia block in Kushinagar, resident doctor, Arun Kumar Pandey, checks the data to inform that in 2017, the centre saw 17 AES cases of which three were referred to BRD. In 2018, there were 11 cases and no referrals.
This year, four AES patients have been treated at the centre with no referral so far. There has been no death in this period.
Dr Pandey credits the “improvement” to government’s immunization and awareness programme called Dastak that was launched in early 2018. Under it, doctors, nurses, ASHA workers, gram sabhas and teachers were trained and deployed for door-to-door awareness on sanitation and preventive care.
“In villages, many women do not wash hands with soap after cleaning their child’s rear. Children’s shit is not considered dirty. If the mothers do use soap, they are taunted for being too modern and fussy. Awareness programmes helped fix this and other peculiar habits,” says Dr Pandey, who has practiced in New Delhi for several years.
While visits and conversations with doctors and patients at these facilities suggested fewer footfall and far fewer casualties, a doctor at a primary centre in Kushinagar, on condition of anonymity, however expressed a “loophole”.
According to him, the pressure on primary centres has increased so much that doctors may well be under-reporting cases and avoiding referrals to BRD, thereby posing a risk to patients.
He said that under new directions, doctors are required to give their names and phone numbers when referring patients to BRD. “Most are reluctant to do so as they are later pulled up for ‘frivolous referrals’.
“So, some doctors are not referring patients to BRD at all and this is putting patients at risk,” he said. The doctor, however, could not cite a casualty arising out of this “reluctance”.
Dr Yadav, on the other hand, refuted the possibility. “It just means that the accountability of doctors at primary centres has increased. It’s a good thing. All that’s needed is to better train them to handle such cases on their own,” he said.
In nearby villages, conversation with villagers presented a mixed picture — some spoke about ASHA workers routinely visiting and giving them health and sanitation tips, while others said that nobody has ever visited them except for vaccination drives.
Awareness and information about ‘dimaagi bukhaar’ (brain fever or encephalitis) and health centres was also found to be mixed, and it varied with income, age and literacy levels.
For instance, 32-year-old Usha Devi from village Sukrauli who has studied till class 10, knew that JE spreads through pigs but her 64-year-old neighbour, who is totally illiterate, did not.
JE is caused by the Culex mosquito that breeds in the region’s abundant water-logged paddy fields during monsoon. Pigs and wading birds act as its natural hosts.
Several women however said they now know that if a child is suffering from fever and begins to show signs of irritability, forgetfulness or restlessness, the child must be immediately taken to a local government facility.
Here’s how AES cases typically unfold in the region: The child returns from playing, looking unusually lethargic. Parents detect high fever and make him rest or give medicines bought without prescription from a medical store.
Within hours or days, the child manifests delirium or disorientation. The symptoms vary — some remain unconscious for hours, some suffer from seizures, some lose motor skills, some fail to recognize their parents, some hallucinate and complain of ceiling fan falling on them, others struggle to breathe.
Parents usually take such children to the nearest quack but, when the condition worsens, they rush in panic to the BRD — putting unimaginable burden on the already stretched hospital.
The recent makeover of children's facilities at the hospital means it is now far more equipped to deal with such footfall. However, given the strengthening of local units, the footfall at BRD is steadily declining.
Bharatiya Janata Party spokesperson for UP, Dr Chandramohan, credits it all to the “will of the current government”. “We made the battle against encephalitis our top priority,” he says.
According to him, what has particularly worked is the way the government roped in multiple departments to tackle the problem and did not make it the health department’s headache alone.
While the Yogi Adityanath government insists that they were serious about the epidemic from the day they formed the government in March 2017, a massive controversy over babies dying of alleged lack of oxygen at BRD five months later — whether justified or not — seems to have served a major purpose, that of a huge, organized effort in fighting encephalitis.
The government seems to be going the extra mile now. Given that many children who survive the disease end up being paralyzed, disabled or partially-abled for the rest of their lives, it has recently opened a rehabilitation centre in Gorakhpur.
It’s called the ‘composite regional centre for skill development’. Across the country, there are only 15 such centres and no state other than UP has two centres, with Lucknow being the other location.
Ramesh Pandey, the director of the Gorakhpur centre, said that the mandate of the facility is to help encephalitis-affected children. Already, 12 such children have undergone therapy at the centre.
“Many children continue to suffer seizures after treatment or develop cerebral palsy. Some lose control of their body parts like neck or limbs, finding it difficult to rest their head on the shoulders or move around. They need long-term help,” Pandey said.
In all, not only is the dreaded encephalitis disease being tackled effectively at the health centres, even awareness is growing about prevention and treatment, and most heartening of all, a rehabilitation centre for survivors has been set up to give a direction to their interrupted childhood.
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