The entire eastern belt of Uttar Pradesh has been under the wave of a deadly encephalitis epidemic for years now. The figure of 50,000 deaths and 16,000 disabilities, mainly of children, is a very alarming one by all standards but neither the Central nor the State Government is inclined to look into the situation. Biswajeet Banerjee travels to the region to bring you a report
Thirtynine-year-old Vidya walks into the out-door patient department of BRD Medical College in Gorakhpur with her three-year-old son Deepak in her lap. Eight months back, Deepak had suffered an encephalitis attack but survived. The attack damaged his brain and reduced this lively boy into a listless body.
“Deepak has lost his senses. He can neither walk nor speak or respond. I can’t see his miseries anymore. I will ask the doctor today whether he will survive,” Vidya says in an anxious voice, glancing nervously at the jampacked encephalitis ward.
The air inside reeks of a mix of ether and phenyl. Oblivious to the nauseating smell, the patients are swarming this ward.
Men and women, some in dirty clothes, wait for the doctors. Almost all of them are poor people who have sold off their land, animal stock, jewellery and taken loans from private money lenders for the treatment of their children, most of them mentally and physically disabled due to the dreaded disease.
Seven-year-old Amit jostles with his mother. What he says is not clear to her or others. He grimaces at his mother Kunti as she tries to pull him closer to her. The boy tries to break free from her grip but falls flat on the floor. She immediately picks him up and plants a kiss on his dry and dirty cheek.
“He can’t stand on his own any more. He can’t speak, can’t convey what he wants — food or water. He has no control over his urine too,” Kunti tells you with tears welling up in her anxious eyes.
Just a few months back, Deepak was a normal child running around in his village and playing with boys of his age. The encephalitis attack ended all that. “Now, he is totally dependent on me for everything,” Kunti says.
Kunti is here with her husband Birza Majhi, a labourer at a construction site in Siwan, Bihar. He earns Rs180 a day and tells you that he has had to take a loan of Rs50,000 from a private money lender to tend to his son’s medical needs. last week, he says, he had sold his cow for Rs16,000 to generate extra funds.
“People back home are advising us to abandon our son at a railway station or somewhere else. They say, he has no future, he is a bojh (burden). How can we do thisIJ He is our son. Jab tak saans hai, aas hai (Hope sustains life). I will try to bear the cost of his treatment till I am alive. Uske aage bhagwan jaane,” he says, looking forlornly at his son who has, by then, started nibbling at a biscuit.
Not that the situation is any less moving for other parents who are here with children afflicted by encephalitis. All from poor backgrounds, they face an acute financial crisis and struggle to fight the mental and physical stress of the prospect of bringing up a disabled child.
Take Sangita. Her four-year-old son Anup Kumar has been in hospital for four months. “We have mortgaged our house for Rs60,000 for our son’s treatment. But there is no improvement in his condition. He cannot even stand now,” she tells you.
A ward boy, meanwhile, throws a cursory look at the parents struggling with their children and says: “It would have been mukti (salvation) for these poor children had they died of encephalitis. Surviving means they will live in a pitiable condition all their life. No one can explain the agony that parents are going through. They sell their dreams to ensure good health for their specially-abled children — something they are not likely to ever get,” he says.
Almost all the villages near Gorakhpur, Kushinagar, Pardauna and Deoria have such stories to tell about their children who survived encephalitis but are now mentally and physically challenged.
lying almost motionless on a charpoy, one of them looks longingly at children who are playing in the distance. Before this deadly disease struck him, he used to be with them.
“It is a curse that has befallen on us,” Kamla Rani, a resident of Sukhrauli village in Kushinagar district, says. Her neighbour’s nine-year-old daughter lost her speech after an encephalitis attack last year. “She used to talk a lot. We used to ask her to keep shut. Now, God has taken away her speech,” she tells you.
Encephalitis is endemic to eastern Uttar Pradesh and parts of Bihar. Earlier, it was Japanese encephalitis that had created havoc in this region. This disease was passed into human beings from pigs through mosquitoes. Blinding headaches, seizures, nausea and high fever precede death in this strain.
The second trait is AES — accute encephalitis syndrome — which is entro-viral and passes into human beings through contaminated water and bad hygiene. It is known to have over 100 traits, including those of JE. Children up to the age group of 15 years are susceptible to this deadly disease.
Earlier, encephalitis was considered to be a “rural disease” because of the area of its spread. It was believed that unhygienic conditions in villages usually led to children being prone to this disease.
However, this myth no longer holds true.
Shamim, 5, belongs to Gorakhpur and is in the ICU of the BRD College for 33 days now. “One night, he had convulsions. We rushed him to BRD Hospital where doctors identified it as an encephalitis attack. He went into coma and has since been in ICU,” his businessman father Md Irshad tells you.
Dr Bharat, Senior Resident in the encephalitis ward, says the exodus of rural people to cities has given encephalitis an urban touch. “Sanitary condition in cities is bad. The drains are clogged with sewage water. In cities, too, people go for defecation in the fields which results in contamination of water source, which results in spread of AES,” Dr Bharat points out.
According to experts, 30 per cent of encephalitis patients die and almost 50 per cent surviving children turn disabled. They suffer hearing, eyesight and mental disorders. As per the BRD Medical College records, in Gorakhpur alone, over 31,000 encephalitis patients have been treated since 1978. Of this, over 10,000 are now disabled.
The NGOs working in this sector have a different story to tell. Chief Campaigner, Encephalitis Eradication Movement (EEM), RN Singh puts the figure at over 50,000 deaths and over 16,000 disabilities. “The Government figure is based on BRD, Medical College. This figure is just the tip of the iceberg as the Government has no accounts about the deaths of children in private nursing homes or about the children who died before they were given medical help,” Dr Singh says in a letter to vice-chairman National Disaster Management Authority, demanding that JE and other forms of encephalitis, including the entero-viral strain, should be declared as National Health Emergency.
His plea got judicial support in 2006 with the Allahabad High Court in 2006 asking the State and Central Governments to declare encephalitis as a National Health Emergency. In its order of November 9, 2006 the court ordered: “By any standard, this is an issue of national importance which must be considered a health emergency by both Central and State Governments. A concrete action plan must be drawn.”
Almost seven years have passed since that order but neither the Centre nor the State Governments have moved an inch to curb the epidemic. The BRD, Medical College is the only address for parents in eastern UP, Bihar and Nepal whose children are inflicted with encephalitis. This is simply because the district hospitals, Community Health Centres (CHCs) and Primary Health Centres (PHCs) do not have the facility to combat this disease.
Principal of the BRD Medical College, Dr K P Kushwaha, tells you that children face problems because of lack of doctors and rehabilitation facilities. “The impact of JE has gone down following a vaccination programme in 16 districts of east UP but still, 20 per cent of the affected children are so weak that they cannot walk, write or hold a glass in their hand,” he says.
“The Central Government was supposed to start many rehabilitation centres in endemic districts but the process is yet to start though an announcement was made way back in 2006,” Dr Kushwaha admits.
Anita Tripathi, in-charge of the rehabilitation centre for JE-handicapped children at the BRD Medical College, admits that the hospital ahs limited options to treat patients, which also includes physio-therapy.
“As most children hail from underprivileged backgrounds, they cannot come here for physiotherapy daily. A proposal is pending with the State Government to start a scheme by which experts could go to thedoorstep of patients,” she says.
In the past five years, the Centre has counselled 7,580 children but half of them have dropped out after two to six months of treatment. “We have no means to know the progress of these children,” she says, looking at the ceiling of the dilapidated building.
Still looking upwards she adds that the rehabilitation centre has been reduced to disability certificates distribution centre. This certificate helps parents a Rs 1 lakh compensation from the Government.
The UP Government has announced a compensation of Rs 50,000 for the families of those whose child dies of encephalitis and Rs 1 lakh for disabled children.
Parents, however, are not interested in compensation. “I want my son back. What will I do with moneyIJ Accepting money means accepting that there is no hope for my son. Give us treatment, not money,” Vidya says, looking at her son who lies unconscious in her lap.