Apathy virus

Absence of preventive measures and affordable and accessible health care leads to nearly 500 encephalitis deaths in Uttar Pradesh.

in Gorakhpur

IT is a strange paradox. In a country that aspires to be a superpower and boasts of rapid economic growth, 488 children died in a State, Uttar Pradesh, from encephalitis alone this year. It is nothing less than a national shame and tragedy. In six districts of Bihar, close to 200 children died this year. These are deaths that occurred in hospitals and hence were reported; the actual toll could be far higher.

Most of the deaths have been due to viral encephalitis caused by an enterovirus, but a few cases have been attributed to Japanese encephalitis (JE), too, which has once again raised the demand for mass JE vaccination. Last year, until December 2010, there were 3,350 encephalitis admissions in hospitals but fewer deaths. The admissions this year until October have been around 2,600, but the mortality rate has been high; the number of admissions may cross 3,000 by 2011-end.

The clamour for the JE vaccine is justifiable, and the fact is that it is much needed despite its high production costs, and the Central government needs to ensure its universal availability. But what has brought matters to such a pass is the abject lack of simple preventive measures, coupled with a total absence of affordable, timely and accessible health care. It is also not a coincidence that most of the children admitted to hospitals were severely malnourished and already in what is called an immune-compromised state. This implies that the enterovirus outbreaks mainly affected the poor.

What is significant is that both the State and the Central governments are refusing to take the deaths seriously. The diagnosis itself has become a subject of much debate, with some sections alleging that there is an attempt to deny that the deaths are caused by JE or an enterovirus. The government does not want to identify it as anything specific, for, in that case, specific measures will have to be taken, said a doctor requesting anonymity.

Meanwhile, people coming to the overburdened and ill-equipped government hospitals, travelling as far as 300 kilometres, to get their children treated, some of whom are critically ill, see them dying a slow death. Their plight is highlighted only sporadically by the media. The State government and the Union Health Ministry definitely do not have this as their priority.

Nothing less than a spectacle awaited visitors at the epidemic wards of Baba Raghav Das Medical College and Hospital in Gorakhpur. It was like walking into a mortuary of the living dead. Designated as one of the sentinel sites for surveillance, the hospital is considered one among the best in eastern Uttar Pradesh. Doctors at the hospital, including the current head of paediatrics, Dr K.P. Kushwaha, had to struggle hard to get the facilities upgraded to tackle the epidemic. It was because of their consistent and dedicated efforts that more beds were added to the paediatric ward, including the Paediatric Intensive Care Unit (PICU) wards. In fact, the hospital had been managing with only one PICU three years ago. Now it has three PICUs, but even these are inadequate.

The hospital is in need of at least 50 ventilators but has only 20. And clearly, there is an overwhelming feeling of helplessness among the medical staff as they find the facilities and the manpower hugely outpaced by the number of patients coming in every day.

The corridors of the paediatric ward were crowded with people, anxiety writ large on their faces as their young ones battled for life in the ICUs. Some of the children had been on ventilators for more than a fortnight and were still unconscious, while a few others breathed strenuously. The majority of them were emaciated beyond recognition, with their little ribs sticking out. The hospital had broadly classified them as cases of Acute Encephalitis Syndrome (AES). Seven-year-old Rahul from Kushinagar had been on a ventilator for 18 days. He had undergone a tracheotomy. Unable to breathe, he occasionally sat upright, his bony chest heaving up and down laboriously as he struggled to get air in and out of his lungs. His anxious parents and the doctors on duty helped with the suction.

Nutrition plays an important role. They are all heavily malnourished. We can only give supportive treatment, said the doctor on duty. Rahul's parents, Kamlesh Prasad and Meera Jaiswal, are small farmers. They know what it is to lose a child. My eldest daughter died of the same fever. There were other children from my village who died, said Kamlesh.

When their child fell ill, Vandana and Sunil Chaudhary took the five-year-old to the government dispensary in their village, Baraat Gaada in Maharajganj district. The government doctors are rarely present. It is a backward district. Our only source of water is the khinchwa [handpump], Sunil said. Like the Prasads, the Chaudharys are also small farmers who can ill-afford to give milk and lentils (a source of protein) to their children.

Three-and-a-half-year-old Ashutosh had trouble breathing. We cannot give him proper food. We have little to live on, said his mother, Soni Chaurasia, breaking down repeatedly. Her husband is jobless.

Very few of the families present had below poverty line (BPL) cards, which would entitle them to foodgrain ration at subsidised rates. Jangalee, a daily wage worker from Siwan district, looked on hopefully at his son Ashok, 10, whom the doctor said would be put on the respirator within a few days. But not everyone was as resilient as Jangalee, who is used to a hard life. Myna Devi from Deoria district broke down as she narrated how her son, Karan, now two years old, was born to her after 25 years of marriage. To lose him now would be to finish me and my husband, she said.

At the PICU wards, parents knew very well that their children were in a critical state. The inmates were aged between nine months and 10 years. All of 10 years, Roshan Singh was being treated for JE. On a ventilator for the past 10 days, he seemed to be responding well to medication. But Neeta Devi, his mother, found it hard to believe the doctor's assurances and began weeping.

Deepak, a daily wager who is used to carrying heavy construction materials on his broad shoulders, could not bear to see his three-and-a-half-year-old son Santosh lying quietly. I spent Rs.8,000 on treatment in a private hospital. He was in the hospital for four or five days and then the doctors said they did not have the equipment to treat him. Finally, my neighbours advised me to bring him to this hospital. No child is coming out of this alive, he said, tears streaming down his cheeks.

Pooja from Siwan, who is almost the same age as Santosh, was not responding to treatment, but the doctor said he could not break this to her grandparents, who were hopeful that the child would soon be well.

Malnutrition

At the Nutrition Rehabilitation Centre being run at the hospital by the United Nations Children's Fund (UNICEF) and the World Health Organisation (WHO), there were children admitted for severe malnutrition. Most of them were AES cases. They belong to families where the stove is lit only once, that is, they eat only once a day, said the dietician on duty. The staff explained to parents the kind of food that was required, but experience told them that only a handful of the families could afford even the minimum.

Frontline was told that nearly 80 per cent of the children with encephalitis who were referred to hospitals were severely malnourished. Mothers tell us that they don't have the resources to feed their children. The resources at the ICDS [Integrated Child Development Services] centres are also not enough. Children with AES can recover with the help of a good diet. A six-month infant needs thick dal soup. All that the families can afford is starch, rice water, said Neha Singh, the main dietician. Government hospitals are the only hope for the poor.

Virus isolated

It was in 1978 that Japanese encephalitis was reported for the first time 278 cases of JE among children and 176 in the adult population. The particular strain of the virus was isolated with much difficulty as virus research was in an early stage at that point. It was called GP78 after Gorakhpur and the year of its isolation. The samples were sent to the National Institute of Virology in Pune, but it was several years after that the virus was finally identified as JE. But its existence was denied even then. Around the same period, there were outbreaks in Tamil Nadu and West Bengal. The measures taken were adequate; for JE, it was enough that the pig population was isolated.

Between 1980 and 1982, as many as 2,000 doses of vaccine were given through the Department of Social and Preventive Medicine at BRD Hospital, mainly to children living on the campus. It was too little as each child required up to two doses. The vaccine was prepared at the Central Research Institute, Kasauli, Himachal Pradesh, a public sector undertaking, which subsequently stopped manufacturing it. In 1985, the hospital undertook a field study in Pipraich block to validate the effectiveness of the vaccine, and it was proved effective. When the epidemic broke out on a large scale in 1986 and 1989, doctors at BRD suggested vaccination as an option.

However, the government continued to deny an outbreak. From 1978 to 2004, the authorities persistently refrained from identifying the fever as viral encephalitis. In 2004, however, doctors at BRD urged the State government to intervene, after which Rs.73.5 lakh was sanctioned for equipment such as oxygen cylinders and ventilators. Doctors repeatedly emphasised the need for vaccination on the basis of the recommendations of the Centres for Disease Control and Prevention, Atlanta, and the WHO.

A viral research centre and separate wards for encephalitis patients were also recommended, but little happened. The proposals were sanctioned by the Central government in 2005, but only a building came up. Manpower for one ward was sanctioned. Simultaneously, vaccination for JE started in the four districts of Gorakhpur, Maharajganj, Basti and Deoria.

The next major outbreak occurred in 2005, in eastern Uttar Pradesh and Bihar. On August 15 that year, six children died, and the news got national prominence. Mosquitoes that had bitten pigs were the main purveyors of the virus. Until 2009, mass vaccination campaigns continued and they are still on in 109 endemic districts. The general thrust was on containing JE through vaccination, and that bore results. From 1,100 JE cases in 2005, the number has dipped to 190 this year. But encephalitis deaths continued. On October 11 this year, taking serious note of the deaths, the Allahabad High Court ordered that a meeting of experts from the State and the Centre be held within a fortnight.

Water contamination

However, action to deal with the more basic reasons for the disease, contamination of water through faecal matter or the lack of provision of clean drinking water, did not accompany the vaccination efforts undertaken earlier. As a result, the Poorvanchal region (eastern Uttar Pradesh and adjoining districts of Bihar) as a whole got plagued with other kinds of encephalitis, including that caused by an enterovirus. Contamination of water was one of the main reasons.

Malaria-causing mosquitoes, too, posed a grave threat. It was estimated that 96 per cent of the population defecated in the open. There were 2,000 to 2,500 villages on an average in each district. With a population of around 1,000 people in each village, at least 20 handpumps were required. Worse, for every 1,700 to 1,800 patients, there was just one doctor.

The region of Gorakhpur and adjoining districts such as Kushinagar, Deoria, Maharajganj are floodplain areas (called terai), where water levels are rather high. Contamination of this source is very easy. Therefore, it is generally advised that for drinking water, handpumps or wells need to be dug at not less than 80 feet so as to prevent contamination from the upper reaches. But most villages have very few government-installed handpumps for drinking water.

A cheaper alternative that people use is the khinchwa, a shallow handpump that does not go beyond 10 to 20 feet and is used for drinking water, washing and cleaning. People defecate in the fields and then wash their hands and feet at the handpump. Often, no soap is used. The night soil of little children is often rubbed into the soil, especially if it is at home. It is not disposed of anywhere as there are no toilets or even a handy water source to wash them properly, said Chandrika Yadav of Dhusia village in Gorakhpur. His infant grandson, Bipin, who had been admitted to BRD Hospital for four months, was discharged only recently. For two months he was at the Nutritional Rehabilitation Centre.

Dhusia village has no government public health centre (PHC) or dispensary. The nearest one is two kilometres away in another village. No wonder that BRD Hospital, at any given time now, has 240 encephalitis patients on an average.

In the majority of the cases, the disease is caused by an enterovirus, and the infection is attributable to causes that are entirely preventable. That is one reason why the hospital has chosen to label the children admitted under the broad category of AES. Even if a small percentage of the cases are of JE, it still comes under the preventable category of diseases. It remains a strange irony that foreign visitors coming to India, especially eastern Uttar Pradesh and Bihar, are cautioned by their governments to get vaccinated for JE. In 2009, according to the Integrated Disease Surveillance Project, there were 18 outbreaks of Acute Diarrhoeal Disease, one of JE, one of AES and two of viral fever.

When Union Health Minister Ghulam Nabi Azad visited the hospital, it was hoped that there would a special package. But nothing of that kind happened. Health, the doctors and the media were told, was a State subject. People were advised to boil water before drinking. To date, there has been nothing on the ground to suggest that any proactive measure has been taken by either the State or the Central government. Worse is the state of the rehabilitation of children who have suffered voice loss, mental retardation, language recognition problems, behavioural abnormalities, hypertonia (stiffness of joints), loss of vision or other debilitating effects of encephalitis.

There is no separate staff, medical and non-medical, for encephalitis patients. The last time the hospital got something was in 2009 when it received Rs.5.86 crore, but the tranche stopped at that.

In JE cases, the patient dies within a week or is permanently disabled. The symptoms are high fever and stiffness of the joints. In enteroviral cases, it takes a longer time for the progression of the disease but the side effects are equally debilitating and devastating; there can even be an organ failure or an unpredictable heart failure.

Most of the rectal swabs revealed that there was a higher proportion of enterovirus cases. There needs to be a separate budget for treatment and a policy for encephalitis, said Dr Kushwaha. Doctors at the PHCs and community health centres needed to be trained and the district hospitals equipped with ICUs, he said. The idea should be to avoid the crisis, not to get doctors after the crisis has built up, he added.

Each district has anywhere between 10 lakh and 20 lakh people, and not all of them have medical colleges and well-equipped hospitals. BRD Medical College is a rarity, but it still needs a lot more in order to cater to the patient inflow from Bihar and adjoining Nepal. The hospital has hired some 135 staff, medical and non-medical, to meet the growing number of patients. It is now finding it difficult to pay the salaries with its existing budget.

Despite the outcry in the media and the efforts of the doctors at BRD Medical College and Hospital, deaths due to any strain of encephalitis are likely to continue if the right measures are not initiated. The problem is not just one of identifying the medical or social causes of the malaise. What is needed is action on the ground.