The disease that has killed 6k children in Gorakhpur since 1978 is back

Recent encephalitis deaths in Gorakhpur put the spotlight back on the disease and the importance of better sanitation as a preventive measure.

The deaths of 42 children in a span of 48 hours at Baba Raghav Das Medical College Hospital — one of the city’s biggest — had Gorakhpur making headlines. This small city located in the northeastern parts of Uttar Pradesh has seen 1,256 such deaths since January, a large number of children dying from encephalitis alone.

Gorakhpur is not new to this dreaded disease. Year after year, as monsoon clouds make their way towards the north, Gorakhpur sees young parents with their little children in tow making a beeline for some of the hospitals considered best for encephalitis treatment.

From inadequate infrastructure, lack of beds and oxygen cylinders to the general breakdown of the healthcare system, a lot of things have been blamed for a tragedy of this enormity. But the fact is, for a disease like encephalitis that revisits the state every year, a lot more needs to be done to prevent it.

Encephalitis, the deadly killer

Encephalitis is an acute inflammation or swelling of the brain caused mostly due to viral infection. Infants and the elderly are particularly at risk of getting infected. With high temperature, headache, nausea, vomiting, and joint pain as early symptoms, encephalitis, if not diagnosed in time, could lead to varying degrees of brain damage, which may require long-term supportive care and therapy.

A number of pathogens have been found to trigger acute encephalitis. Until 2007, a majority of deaths due to encephalitis in India were found to be caused due to Japanese encephalitis (JE), a mosquito-borne virus.

While the cases of Japanese encephalitis are on the decline, encephalitis cases that we see more now are non-mosquito-borne; they are due to bacteria, fungi, parasites, spirochetes, chemicals, and toxins.

Together, they have been termed Acute Encephalitis Syndrome (AES) by the World Health Organization (WHO). AES is difficult to diagnose and to treat. Encephalitis infections now include both JE and AES in India.

Encephalitis distribution in India

AES infections continue to dominate the scene in India now with the country recording 6,359 AES cases and 439 deaths while JE cases were at 959, with 104 deaths as of August 20, 2017

Although the spotlight is on Uttar Pradesh (thanks to the BRD hospital tragedy), Assam is the worst affected followed by Uttar Pradesh, West Bengal, and Manipur.

In Gorakhpur, however, encephalitis has made its appearance annually since 1978; nearly 6,000 children have died from both kinds of encephalitis in the hospitals since then. Manojeet Ghoshal, a developmental expert working among rural communities in Gorakhpur, says,

“Although all the attention is on Gorakhpur, seven to eight districts bordering Gorakhpur also report AES and JE cases every year. Child deaths are high in the area in the months of July, August, and September and many cases in rural areas go unreported. Many children who survive get impaired. I have personally seen children becoming paraplegic in remote rural villages and poor families find it very difficult to handle the situation.”

Evidence over the last six years has shown that there has been a drop in cases of JE while children have been dying of another form of viral encephalitis. Dr Shiraz Wajih, President, Gorakhpur Environmental Action Group (GEAG),informs,

This enterovirus that causes AES has been attributed to contaminated drinking water. The groundwater table is high in many areas in Gorakhpur and people get drinking water from shallow hand pumps that get frequently contaminated with sewage due to flooding during heavy rains.

These infections have been found to increase during monsoon and affect children under five who are severely malnourished and from poor economic backgrounds.

Gorakhpur, a lesson in better healthcare

Experts attribute a number of geographical, ecological, and socioeconomic factors to the spread of encephalitis in the region. Dr Shiraz says,

The issue is not just administrative failure. We have failed to address the very important issue of preventive health while managing the epidemic. The ecology of the terrain and the socioeconomic profile play a role in causing and spreading the epidemic.

Gorakhpur is a bowl-shaped city with high groundwater tables. "The terrain of the area is low-lying to flat, which leads to problems of waterlogging and flooding during high-rainfall months of June to August. Although roads are constructed by the government, no efforts are being made to drain off the accumulated water."

"This stagnant water becomes breeding sites for mosquitoes, increasing the risk of JE. Sewage also continues to be mismanaged and open defecation is common in the area. Mixing of sewage with standing water also contaminates the groundwater and shallow drinking water sources leading to the spread of AES in the area,” he says.

"A large section of the population in Gorakhpur is directly engaged in agricultural activities. Small marginal families also own goats, pigs, and other kinds of livestock. The animal excreta mixes with the water leading to the spread of JE and AES,” says Ghoshal.

“Being a poorly governed state with a lack of accountability, there are no mechanisms in place to manage safe disposal of solid waste and medical waste; drains are never desilted, sludge is thrown in open areas,” he adds.

Evidence shows that poverty, poor hygiene, and poor nutrition increase the vulnerability to encephalitis pathogens. And when people get sick, they can only afford public health facilities, most of which can neither diagnose nor treat the disease as quickly as it is needed.

Improved sanitation as solution

After the JE/AES encephalitis outbreak in 2005 in Gorakhpur that killed nearly 1,000 children, the Government of India introduced the JE vaccine in high-priority areas including Uttar Pradesh. Large vaccination campaigns were held in 11 most affected districts in 2006, 27 districts in 2007, 22 districts in 2008, and 30 districts in 2009. However, the outreach of the vaccination programme was found to be very poor in Gorakhpur. In March this year too, the state government launched a JE vaccination drive in 38 districts in UP.

Experts, however, are critical of the narrow, curative approach of the government. Dr Shiraz says,

“The exclusive focus on curative care and supply of resources mask the real issue — the poor infrastructure, the poor sanitation and hygiene in the district, and the lack of clear and long-term planning to deal with the epidemic in the future.”

Dr RN Singh, a Gorakhpur-based medical practitioner, is of the opinion that vaccination is not a magic bullet that will eradicate the disease in a short span of time. Rather, tackling sanitation and hygiene problems resulting from open defecation and contaminated water supply which make the population susceptible to enterovirus encephalitis needs to be the focus of the interventions.

Even the 10 percent JE infections that still continue to persist in the area can be tackled through improving sanitation in the area, says Dr KK Aggarwal, President of the Indian Medical Association.

Nowhere else has the importance of sanitation in the prevention of disease been felt as pertinently as in the case of the encephalitis epidemic in Gorakhpur. Urgent preventive efforts focusing on the availability of safe drinking water in the area, improving the sanitation situation, dealing with the regular problem of waterlogging and flooding, undertaking measures to prevent mosquito breeding, and involving affected people in the area in the preventive efforts by increasing their awareness will go a long way in preventing such tragedies in the future.

Disclaimer: This article, authored by Aarti Kelkar-Khambete, was first published in India Water Portal. The views expressed by the author are his own and do not necessarily reflect that of YourStory.