Encephalitis. 120 days. 400 children dead.

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The epidemic no one cares about

Stark reality Humans sharing living space with pigs and swampy streets are key factors in spreading the disease
Stark reality Humans sharing living space with pigs and swampy streets are key factors in spreading the disease
Photos: Abhinav Rajan Chaturvedi

By Soumik Mukherjee

A WOMAN’S blood-curdling scream rings out in the dark room. Dr Mahima Mittal, who is attending to a patient, shifts her gaze to the farthest corner of the room to locate the crying mother, but in vain. A power cut has made it impossible to see beyond a few feet. Otherwise, a cursory glance would reveal dozens of unconscious children huddled up in beds that cover the floor from end to end.

The scream signals the death of yet another child due to encephalitis in the paediatric ward of the Baba Raghav Das Medical College (BRDMC) in Gorakhpur, Uttar Pradesh. It’s the third death of the morning, on 29 September. By the end of the day, the toll would reach seven. But the doctors have no time to mourn. They have to monitor the condition of 90 children who are fighting for their lives in the same ward.

BRDMC is the only medical facility that has a dedicated encephalitis ward in this region where more than 50,000 people have died of the dreaded disease since 1978, when the first case of encephalitis was reported from Gorakhpur. The medical college hospital serves encephalitis patients from 19 districts of Uttar Pradesh, Bihar, Assam and sometimes patients from the bordering areas of Nepal too.

For the harried doctors, it’s just another day in the paediatric-turned-epidemic ward, which has seen the most number of child deaths in the country. More than 400 children have succumbed to encephalitis in this hospital since June. The average toll is 3-4 per day, but on some days, the death count crosses double digits.

Last year, more than 450 children died in the peak season (July-October). In 2010, the figure was around 550. Almost 95 percent of the cases are of enteroviral encephalitis, in which the virus enters the body through the intestine.

Most of the victims are aged between six months and 12 years and come from the hinterlands, where primary health centres are in shambles. “All these patients are referral cases. By the time we receive them, it’s already too late. The survival rate is next to nil,” laments Bharati Bhandari, a junior physician at BRDMC. “Patients come with an inflammation of the brain and other vital organs such as heart, liver and kidney. It leads to organ failure.”

The symptoms include poor feeding, irritability, vomiting and body stiffness; such symptoms in an infant always constitute a medical emergency.

Four-year-old Raja lies unconscious in bed. His father Munnilal brought him from Kushinagar, located 53 km away, “when his high fever continued for more than five days”. The child received his first dose of medication only after reaching Gorakhpur. Same was the case with Prince, a three-year-old from Gopalganj, located 122 km away. “The moment he had fever, we decided to bring him here. Some kids died recently in the nearby villages due to fever,” says Prince’s grandmother Meera.

But none of these people have any knowledge about encephalitis because the Uttar Pradesh government has rarely run campaigns to spread awareness about it.

The virus is more lethal in children because they often suffer from chronic malnourishment. “None of the kids receive the minimum calories required. As a result, their bodies lack any immunity, which makes them an easy prey,” says Dr Aftab, a resident physician at BRDMC.

The lack of awareness on hygiene and sanitation, coupled with groundwater pollution, have made this disease a major scourge. “Lack of hygiene has always been the root cause for the spread of the encephalitis virus in Gorakhpur. Be it the mosquito-borne Japanese encephalitis (JE) or the comparatively new water-borne enteroviral kind,” says BRDMC Principal Dr KP Kushwaha, who has been treating encephalitis patients for the past three decades.

The mosquito-borne JE virus thrived because of the sheer number of pigs that are reared in Purvanchal. Pigs act as a carrier of this virus. “In the rural districts, rearing pigs is a popular livelihood and a profitable one too. Most of the pig farms are in residential areas and people share the same living space as pigs. This has been one of the principal reasons for the massive spread of the JE virus,” says Dr Kushwaha.

JE cases now constitute only 2-4 percent of the mortality count. Since 2004, it’s the enteroviral encephalitis that’s claiming most victims. While there is a vaccine against JE, prevention is the only way to fight the new virus.

The principal factor for the spread of entero viruses is the polluted groundwater. “Years of large-scale irrigation have raised the groundwater level in Gorakhpur. Now one can get water by digging only 8-10 feet. People don’t bother if the water is safe or not because shallow water is always cheaper to pump,” says Dr Kushwaha.

But the story is not just about poverty and lack of hygiene. It’s a story of state apathy as well. Even after 50,000 deaths in the past 30 years, the state government has done precious little to notify it as a health emergency or tackle it properly.

“They are still treating encephalitis as any other vector-borne disease like malaria or dengue. Whereas it should be announced as a notified disease,” says Radhe Mohan Mishra of the Gorakhpur Health Forum. Announcing it as a notified disease would make it a national health emergency.

But at the epicentre of the outbreak, no one is sure how many more deaths it will take for the state authorities to realise the gravity of the situation.

The state government’s usual response has been to wash its hands of the matter by announcing relief packages. After the death of 2,000 children in 2005, the then chief minister Mulayam Singh Yadav announced that a new encephalitis ward and a national-level laboratory for viral research will be built at BRDMC. Locals complain that when Mayawati was in power, all she did was announce a relief package of Rs 18 crore despite hundreds of deaths. Meanwhile, the special ward is still being built. Same is the status of the virus lab.

Even the existing infrastructure is grossly inadequate and is in a state of disrepair. “We are helpless and trying our best. The deaths will go on as long as we don’t have enough resources,” says a junior doctor, who is trying hard to save the life of a child admitted in the ICU. He can’t use the ventilator monitor because there is a power cut, even inside the ICU. Gorakhpur endures almost 6-8 hours of power cut every day and the hospital is not exempted.

The recurring power cuts have caused severe damage to valuable hospital equipment. Most of the ventilators are out of order. Only 10 of them are functioning in the paediatric wards, which have received more than 2,500 patients in the past four months. A hospital staffer assures that 12 new ventilators are arriving soon. But that too looks doubtful because no one knows where the money will come from.

A recent RTI application filed by a local NGO revealed that BRDMC, which caters to almost seven crore people, has received only Rs 42.9 crore for specialised treatment of encephalitis in the past five years, apart from the annual budget of Rs 50 crore. Compared with other national medical colleges in UP, this sum looks inadequate, given its importance in the state’s public healthcare. This also explains why the hospital suffers from a shortage of doctors.

“No senior doctor wants to work here. The salaries are not paid on time. Everyone wants a transfer,” says a medical practitioner in Gorakhpur on the condition of anonymity. Dr Kushwaha admits that recently, the hospital had to call 35 medical students from other medical colleges to fill the shortfall. “Seventeen of them are still working here,” he adds.

Too young to die Children suffering from encephalitis getting treatment inside the ICU of the Baba Raghav Das Medical College in Gorakhpur
Too young to die Children suffering from encephalitis getting treatment inside the ICU of the Baba Raghav Das Medical College in Gorakhpur

IT’S NOT only the state government that has neglected the issue. The Centre too has failed to address the situation. The Centre took notice of the epidemic only when a group of citizens led by Dr RN Singh, a senior private practitioner and campaigner against encephalitis, wrote a letter to Prime Minister Manmohan Singh and UPA Chairperson Sonia Gandhi in 2010, chronicling the plight of people suffering and dying of encephalitis in Gorakhpur. “We wrote the letter with our blood,” reveals Dr Singh.

Soon, a Group of Ministers comprising the Ministries of Water and Sanitation, Health, Social Empowerment and Children and Women Welfare sanctioned Rs 3,400 crore for Gorakhpur. But not a single paise has arrived so far. “It was just a political gimmick, a cheap stunt before the 2012 Assembly election,” says Dr Singh. If we are lucky, the money should arrive before the 2014 General Election.”

A former state health ministry bureaucrat lays the blame at the Centre’s door. “We have repeatedly called for the attention of the Union government but they have always shown a lax attitude towards encephalitis in Gorakhpur,” he says on the condition of anonymity. “The process of building a new 100-bed encephalitis ward in the BRDMC and the inclusion of some important equipment are stalled because the process of calling for tenders and handing away the contracts are time-consuming,” he adds.

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50,000
People have died of encephalitis in Gorakhpur district since the first case was reported in 1978

6-8
Hours of power cut in Gorakhpur every day; even the main medical college hospital is not exempted

Rs 3,400 cr
The amount sanctioned by the Centre in 2010 to tackle the dreaded disease. Not a single paise has arrived so far

19
Districts served by the BRDMC, the only hospital that has a dedicated encephalitis ward in the region

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Apart from the bureaucratic tangles, the real tragedy is that successive governments have failed to provide safe drinking water to the people. Gorakhpur-Basti zone has only 3,000 Mark II handpumps. Mark II handpumps are the cheapest way to get safe drinking water. It fetches water from 150 feet under the ground. “There should have been a Mark II for every 100 people in regions where hundreds are dying just because of contaminated water,” says Dr Singh.

On 26 September, Union Rural Development Minister Jairam Ramesh announced a new campaign for spreading awareness on sanitation in Delhi, along with Bollywood actress Vidya Balan, the star campaigner. The irony is that while the cameras focussed on the star, no one was keeping a tab of how many children died because of not having access to safe drinking water.

Probably the inclusion of a star and campaigns worth crores can change the situation. But the success of these highprofile stunts will be determined only next year when the season of death will return along with the monsoon.

Soumik Mukherjee is a Photo Correspondent with Tehelka.
[email protected]

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