Mystery diseases grip India, but surveillance is almost non-existent – finds new Down To Earth investigation

Diseases and outbreaks remain “unnamed and unknown”. One-third of fever outbreaks in India remain undetected because of limited diagnostic facilities and poor testing 

Investigation report released at a webinar here today 

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New Delhi, July 27, 2020: India’s National Centre for Disease Control (NCDC) has a special programme called the Integrated Disease Surveillance Program or IDSP, which brings together information of outbreaks from every part of the country. A new investigation by Down To Earth, the science and environment fortnightly, has found that despite such an elaborate system in place, a number of diseases remain

“unknown and unnamed” in India. 

Says Vibha Varshney, associate editor, Down To Earth and the researcher-writer behind the investigation: “COVID-19 has changed our lives. But this cannot be the only new microbe which triggers diseases and kill people. There have been regular and numerous reports of outbreaks happening across the country – the first step in combating such outbreaks is understanding their nature, identifying them. Surveillance of diseases is the best way to keep a tab on emerging and re-emerging diseases. Our investigation was done to find out if India’s disease surveillance system is effective enough in taking that first step.” 

She adds: “What we have found is that the system is in shambles.” 

The Down To Earth investigation lists some of the major mysterious outbreaks that have happened in the recent past.

• Gorakhpur disease: Since 2005, encephalitis cases have been reported every year from Gorakhpur and its neighbouring districts in Uttar Pradesh. It has been variously identified as Japanese encephalitis or connected to an enterovirus or the scrub typhus – mistakenly, because the disease continues to kill.
• Muzaffarpur disease: Since 1995, cases of encephalitis deaths have been reported from Muzaffarpur and neighbouring districts. Here too, multiple theories are doing the rounds – from linking it to pesticides, heat stroke and even to a toxin present in the lichifruit (which this region is famous for) which is fatal for undernourished children.
• Saharanpur disease: In the 1980s, cases of encephalitis were reported from the Saharanpur region (Uttar Pradesh). The outbreak was variously linked to Japanese encephalitis, pesticide use, and to toxins present in Cassia seeds.
• Malkangiri disease: In February 2020, 15 deaths were reported from just one village, Kenduguda, in Malkangiri district of Odisha. The patients complained of swelling in the legs and stomach and acute respiratory problems. Medical teams from Malkangiri diagnosed that the deceased could be suffering from kidney or heart ailments, or anaemia, or tuberculosis.
• Sawai Madhopur case: In September 2019, more than 1,000 cases of fever were reported from village Chaan in Sawai Madhopur (Rajasthan). Just 28 blood samples were collected -- 15 of these were found positive for dengue, chikungunya and scrub typhus. Out of another 15 throat swab samples, three were found positive for the diphtheria pathogen; only two of the 570 blood smears tested positive for malaria. This still left many undiagnosed patients. 
• Cases from six UP districts: In August 2018, fever-induced deaths were reported from six districts of Uttar Pradesh; Bareilly alone witnessed 202 deaths. Only 24 of the deaths were investigated -- reasons for 178 deaths could not be identified.  

Down To Earth’s analysis of investigations by the IDSP covered the weekly outbreak reports available on the Programme’s site for 2019 and 2020 – IDSP reported 33 outbreaks of fever and 12 of acute encephalitis syndrome (AES) till week of March 16-22, 2020. While it kept the outbreak under surveillance in some cases, IDSP has not made the final outcomes public; neither are the results of further investigations on samples available. Says Varshney: “The Programme categorises these as ‘fever’, which is a symptom and not a disease -- hence, these can be referred to as fevers of unknown origin.” 

Down To Earth researchers found that IDSP uploads its reports retrospectively – its last weekly alert is from as far back as March 2020. All states do not report; the report for March 16-22, for instance, is based on information received from only 17 states and Union territories (UTs). 

Moreover, there are wide discrepancies in the number of states and UTs mentioned in the total tally and in the description list of the outbreaks. The IDSP also gives monthly reports, but these rarely provide any detailed information of all outbreaks. IDSP fails to use its allocated budget – “in 11 of the 13 years between 2004-05 and 2016-17, its expenditure was lower than the allocated budget,” says the Down To Earth investigation. 

Says Varshney: “These ‘mystery’ diseases are of concern as there is an increased fear of emerging and re-emerging diseases. Researchers have identified 43 emerging and re-emerging viral diseases that threaten India today -- 23 of these are of zoonotic origin. There are reports that zoonotic diseases are spreading very fast across the country. The Nipah virus, for instance, was reported from Siliguri in 2001, and became an outbreak in Kerala in 2018. Cases of kala azar are coming up in Kerala, though the disease is typically reported from Bihar. These outbreaks can be fatal in absence of strategies and policies to fight them.” 

Speaking at the webinar, Sunita Narain, director general, Centre for Science and Environment (CSE), who anchored the webinar and moderated its discussions, said: “What is alarming today is the declining interest in infectious diseases and in their control and prevention. We must remember that each of these mysterious diseases – perhaps perceived as ‘diseases of the poor’ -- have a potential to turn into a COVID-19-like pandemic. Today, COVID-19 has shown us that there is no class divide: the ‘diseases of the poor’ can affect and ravage the rich as well with equal ferocity.” 

Summing up the discussions, she added: “We must have the wherewithal to find the causes of these diseases – we must catch it before it happens, in the words of the speakers who addressed today’s webinar. And in all this, the role that media plays is critical, especially in a scenario where official surveillance agencies are faltering – in many a case, the media’s has been the first voice to call out that there is a problem. This call must be heeded. The medical community can collaborate and work with the media to investigate these first alarms.”

 

For any other help on this subject, or to speak with our experts, please contact: Sukanya Nair of The CSE Media Resource Centre, sukanya.nair@cseindia.org, 8816818864.