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Been there, done that-Santosh Singh
-The Indian Express

Only the names of the patients have changed. Acute encephalitis syndrome is back in Bihar, hitting the same districts as every year, its victims once again mostly children of Mahadalit communities living in various degrees of poverty, their resistance levels lowered by malnutrition and exposure to heat.

And the government response has been repetitive to the point of being ritualistic. It has asked for Central assistance and set up yet another committee to monitor treatment, besides seeking cover behind a comparison with Uttar Pradesh, saying the annual mortality rate due to AES is 40-45 per cent there, even worse than Bihar’s 25-30 per cent.

The awareness campaigns promised every year are yet to start, the urgency watered down by the inevitable subsidence in the outbreak once the monsoon arrives. The mystery around the disease persists, with tests every year establishing only what it is not — Japanese encephalitis — while people in most affected areas are yet to be vaccinated against even JE. There has been talk yet again of declaring it an epidemic but the government has never gone beyond announcing its intent.

Of the 458 patients admitted to Bihar’s major hospitals this year, 169 have died so far, the death rate higher than in 2009 and 2010. Around 90 per cent of the patients are children of Scheduled Castes from districts where the disease strikes between June and August. Here are six things that haven’t changed about the annual phenomenon.

Those who suffer

Expert opinion differs on whether malnutrition is among the main reasons for AES but there is no denying that those affected are invariably malnourished children from among the Mahadalit communities. These Scheduled Caste children, who live in low-lying areas with little access to proper drinking water, often show inadequate glucose levels.

“We are labourers and know nothing about the disease except that it kills fast,” says Nilam Devi, whose son Amit, 2, has been admitted to Kejriwal Hospital in Muzaffarpur. Three-year-old Rani’s parents wonders how children of better-off families in the same areas don’t suffer from AES.

A pediatrician from that district, who is in a government committee monitoring treatment, attributes AES to 4G (gaon, garibi, gandagi, garmi). Kejriwal Hospital administrator V V Giri says that apart from socio-economic profile of the patients, the government’s lackadaisical approach to tackle AES hasn’t changed either.

Nothing explained

With the promised awareness programmes forgotten once the rains arrive, few families know about the little precautions that might have protected their children. “Parents don’t know the importance of even minor things like drinking boiled water, not allowing children to walk bare-chested in the sun, or eating a lot of jaggery to maintain one’s glucose level,” says Dr Rajiv Kumar, in charge of the special encephalitis ward at Kejriwal Hospital. “No government doctor or any health worker has ever told us about any preventive measures,” says Sanjay Das of Bochaha. Health minister Ashwini Kumar Choubey says awareness campaigns are a continuing process and all areas cannot be covered at once.

Little known

Every year, a team from the National Institute of Virology, Pune, collects blood samples and reports after tests that it is not Japanese encephalitis. On Saturday, a team from National Centre for Disease Control, Delhi, led by epidemiologist Dr Himanshu Chauhan, collected blood and other samples.

“We never get to know what this disease is,” says hospital administrator Giri. “We offer only symptomatic treatment and have settled for calling it AES rather than arriving at any conclusion. I have been observing government efforts for 20 years. It is only a firefighting exercise at the last moment”. The symptomatic treatment is for high fever, convulsions, headache and frothing at the mouth.

The state government last year announced plans to open a lab on the pattern of NIV, Pune. A detailed project report is not yet ready. “It takes lot of time to get results on blood and cerebral spinal fluid tests. We need a lab close to provide speedy relief,” says Dr Arun Shah, a member of the government committee.

Hesitant govt

Last year, the state government was on the verge of declaring an epidemic which would have allowed it to conduct tests on brain tissues of the dead. This year too, the health minister has been saying it can be declared a epidemic. With tests on cerebral spinal fluid proving inconclusive, that would have been a crucial step towards identifying the disease. What could be holding the government back is social and political reasons — declaring an epidemic would mean segregating the affected areas from the rest of the state, in turn creating a possible sense of alienation among residents of those areas. “Declaring an epidemic is the last option. We are trying to convince parents to allow sampling of children’s brain tissues, which can now be taken without the skull being opened,” says the health minister.

No vaccination...

The parents of many patients say their children have been given only polio drops. Amid the government’s claims of carrying routine vaccination drives regularly, hardly anyone living in the affected have heard about any of these vaccines being for JE. Last year, the government claimed that over one lakh children under 13 would be given JE vaccines. The parents of Renu, now battling for her life, says she got only polio drops. Vinod Manjhi of Mushahari, whose son is admitted, says, “I heard about the government distributing some health cards but have not got one for my children yet.”

...Or other preventives

Most parents say their areas have rarely been sprayed with DDT, let alone be fumigated. They have never heard about fogging either. “As the disease is reported mainly from low-lying areas, fogging is essential,” says Dr Arun Shah. “Besides, these people live close to animals, which attract several types of insects and some of these can be AES carriers.”