India’s mysterious diseases: Why are they happening?

The Integrated Disease Surveillance Programme is not working as it was conceptualised, say experts

By Vibha Varshney
Published: Wednesday 22 July 2020

The havoc created by the novel coronavirus disease (COVID-19) is a reminder of how little we understand and can control diseases outbreaks. The silver lining in the case of COVID-19 is that at least we know it is caused by a coronavirus (SARS-CoV-2). There are many instances where the scientific fraternity just fails to figure out what the cause of the disease could be and India has quite a few examples of such diseases.  

In August 2019, 164 people in Assam’s Tezpur reported a mysterious fever. The patients included people of all ages and both men and women were affected. Though the patients were tested for malaria, all tested negative. The cause could not be found but the patients could be treated on the basis of symptoms.

Similarly, there is no information available on what could have caused the more than 1,000 cases of fever in September 2019 in Chaan village of Sawai Madhopur district of Rajasthan. A total of 28 blood samples were collected and half were found positive for dengue, chikungunya or scrub typhus.

Three children tested positive for Corynebacterium which causes diphtheria and another three for malaria. However, a large number of cases continued to be due to unidentified reasons.

Media reports show that the disease continued to affect more people till October. The families of the patients even demonstrated in front of the district hospital, claiming their family member did not receive care. 

This uncertainty is present despite the fact that these outbreaks were investigated by the top Indian body set up for this purpose. The responsibility of studying diseases outbreaks in India is with National Centre for Disease Control (NCDC).

NCDC implements India’s Integrated Disease Surveillance Programme (IDSP) which helps them collect data from the ground — from each village of the country. IDSP carries out syndromic surveillance, which is based on the symptoms and health workers, village volunteers and non-formal practitioners can keep a lookout for an outbreak.

Six syndromes have been identified to help them categorise the diseases:

  • Fever
  • Cough for more than three weeks duration
  • Acute flaccid paralysis
  • Diarrhoea
  • Jaundice
  • Unusual events causing death or hospitalisation

This means that the health worker has to simply put down the symptoms as fever with rash and not identify the disease as measles.

These workers fill the ‘S’ form (suspected case form). The workers can direct the patients to doctors who verify the disease and fill the ‘P’ form (probable case form). In case diagnostics samples are taken, they are tested in laboratories where the personnel fill the ‘L’ form (laboratory confirmed form).

Since November 2007, IDSP has been reporting outbreaks every week and on an average, 30-40 outbreaks are reported per week. Often, outbreaks are spotted by the media too and IDSP also scans media reports to augment the surveillance since July 2008. The IDSP depends on the state machinery for data. 

However, many outbreaks do not even make it to the list generated by IDSP. Since February, a mysterious fever has been reported from Malkangiri district, Odisha and as many as 15 deaths have been reported from just one village, Kenduguda, which has a population of about 400.

The patients, who were between 15-35 years of age, complained of swollen legs and swollen stomach and could not even stand. They also suffered from acute respiratory problems. According to media reports, a medical team from Malkangiri visited the village and suspects the deceased could be suffering from kidney or heart ailments or anaemia or tuberculosis.

In October 2019, a mysterious fever was reported in Surat. This was presumed to be dengue but surprisingly, blood platelets were not affected. In August, September and October 2018, a mystery fever claimed lives in six districts of Uttar Pradesh. In Bareilly, 202 deaths occurred in four blocks and the causal agent in some cases was identified as malaria, dengue or Japanese Encephalitis.

However, a majority of the cases remained unidentified and media often referred to the disease as mystery fever. Death audit was carried out only in 24 cases and out of these, two were found to be malaria while others were attributed to chronic diseases (TB, kidney failure, heart failure, asthma).

Overall, the reasons for 178 deaths are not known. Officials say that as the patients had gone to jhola chaap doctors (informal medical practitioners who do not have any medical degree), they do not know the kind of treatment the patients got initially. 

The list just goes on.

timeline of India’s mysterious illnesses 

Down To Earth analysed the weekly outbreak reports released by IDSP and found 31 outbreaks of fever in 2019 and two in 2020 (till July 12, 2020, data available till the 12th week ie March 16-22). These outbreaks were investigated by the rapid response teams set up at the district but in most of the reports, it is seen that these diseases are negative for the usual suspects like malaria, dengue, chikunguniya and scrub typhus.

The reports sometimes also show that samples have been sent for further investigations but the results are not available in public domain. The IDSP website also puts out monthly “disease alerts”, which provide analysis of some diseases but the latest monthly report available on the site is for September 2019.

None of the fever cases reported in 2019 have been analysed in the monthly reports. Emails written to IDSP surveillance officers in all these states on more understanding of the outbreak remain unanswered. Similarly, the director of IDSP who is also the director of NCDC has not reverted on requests for information or even an appointment.

The fact that these fever cases are testing negative for the usual suspects makes them fevers of unknown origin. A study authored by researchers and directors of IDSP / NCDC, National Institute of Virology and Indian Council of Medical Research (ICMR) and published in 2019 in Indian Journal of Medical Research took cognisance of fevers of unknown origin.

They analysed outbreaks in 2017 and pointed out that despite a battery of tests available for a variety of pathogens, aetiological agents cannot be detected in as much as one-third to one-fourth of patients with fevers.

This raises concern as many emerging and re-emerging zoonotic diseases have been reported in the recent years. Globally, more than half of the 1,407 human pathogens are zoonotic and in many cases can cause fevers of unknown origin, warned a 2007 analysis published in Infectious Disease Clinics of North America.

It added that developing countries like India were at a higher risk of fevers of unknown origin than developed countries (43 per cent vs 22 per cent)

The 2019 paper too has identified as many as 43 emerging and re-emerging viral diseases in India. As many as 23 of these were zoonotic diseases. It is just a matter of time that one of these emerging / re-emerging diseases becomes virulent and results in a pandemic.

For example, in recent years, the Chandipura virus has emerged as a major encephalitis pathogen. The virus, that is spread by sandflies, has caused outbreaks in Andhra Pradesh (2004, 2005, 2007 and 2008), in Gujarat (2005, 2009-12) and in the Vidarbha region of Maharashtra (2007, 2009-12) according to a study published in the Open Virology Journal in August 2018.

Similarly, scrub typhus too is being reported from newer geographies. This disease, which earlier used to be reported mainly from Himachal Pradesh, has expanded to new geography and changing ecology and since 2018, it has been implicated in the Gorakhpur fever cases too.

Nipah virus, which was first reported in Siliguri in 2001, was reported in Kerala in 2018.

In 2018, researchers looked at the reemergence potential of zoonotic diseases and found that emergence of a disease in a new area increases complexity of forecast.

They found that cutaneous leishmaniasis, Japanese encephalitis, leptospirosis and scrub typhus are spreading to a much wider area at an alarming rate in the last 68 years.

The sudden outbreak of a rare disease like Kyasanur Forest Disease can be fatal due to the unavailability of strategies and policies to fight against them, wrote Ramesh C Dhiman of ICMR’s National Institute of Malaria Research and Aakanksha Tiwari of Banaras Hindu University in the journal Medical Reports and Case Studies on August 31, 2018.

They advise that to avoid situations like pandemics, India should strengthen the public health surveillance systems and provide quick medical facilities to control the rate of mortality and morbidity during outbreaks.

“Disease surveillance programmes like IDSP were originally conceptualised as early warning systems for detection of signals for potential future outbreaks. IDSP was designed to detect unknown or newly emerging diseases. However, IDSP is not working as it was originally conceptualised,” says Rajan R Patil, an epidemiologist and associate professor, School of Public Health, Division of Epidemiology at SRM University, Tamil Nadu.

He was part of the process of setting IDSP in its initial years as part of an UN assignment. “Currently, the surveillance work is being done in a mechanical manner. Instead of monitoring and providing data on a real time basis, people are filling the data after weeks, even a month and even the weekly bulletin is often given retrospectively,” he says.

This defeats the very objective of disease surveillance ie early detection of outbreaks and averting large scale sickness and deaths due to infectious disease.

This is the first article of a 3-part series

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