Epidemiologists say India’s centre for disease control withheld COVID-19 data since pandemic began
In the first week of February, the Integrated Disease Surveillance Programme, a government initiative under the health ministry’s National Centre for Disease Control, recorded in its weekly report that India had reported its first three positive cases of COVID-19. The IDSP tracks the spread of diseases in India and publishes a weekly report of outbreaks on its website. For over a decade, the IDSP has diligently published a report every week of the year about the outbreak of diseases in India. But inexplicably, the agency best equipped and with most expertise to track and survey the spread of the coronavirus pandemic in India, has not published a single report since 2 February, when it recorded India’s first COVID-19 cases.
“This was the whole point of setting up the organisation,” an expert in global public-health told me, speaking on the condition of anonymity. “They’ve been preparing for a pandemic like this all their lives. Now the pandemic is upon us, where is NCDC? Across the world, CDCs are leading pandemic response, but in India, the response is led by the ICMR, with the NCDC being invisible when it is most needed.” Three months into the fight against COVID-19, multiple epidemiologists and public-health experts, including one senior official from the Indian Council of Medical Research, said that the NCDC was neither sharing data with the ICMR, nor regularly attending pandemic-response meetings.
The IDSP was launched in November 2004, with funding from the World Bank, a year after the outbreak of severe acute respiratory syndrome, or SARS. It was set up under India’s NCDC with the specific mandate of tracking diseases, and has established surveillance units at the central, state and district levels. The initiative’s weekly reports are critical for surveilling of outbreaks of diseases such as malaria, dengue et cetera in real time. As stated on its website, the IDSP seeks to “monitor disease trends and to detect and respond to outbreaks in early rising phase through trained Rapid Response Teams.”
The novel coronavirus pandemic is not just the NCDC’s gravest test, but in fact its raison d’être. Broadly speaking, the health ministry gets its data from two major sources: the IDSP, which has the larger data set, comprising information gathered from contact-tracing operations, quarantine centres, and airports; and the ICMR which gets testing data from laboratories. But since 2 February, the IDSP has not disclosed its data.
According to my interviews with at least three scientists and epidemiologists involved with the government’s pandemic response, the issue of the IDSP withholding data was raised at a meeting that included Harsh Vardhan, the union health minister. On 27 March, Vardhan had constituted a “High Level Committee” to review the COVID-19 situation in India. The committee held its first meeting four days later. According to the scientists and epidemiologists privy to the events that transpired during the meeting, when the attendees raised the issue, Vardhan refused to make the data public. They told me that Vardhan claimed he had “in-house experts.” He did not explain why in-house experts precluded the NCDC from sharing the data.
“I don’t know who these in-house experts are,” one of the epidemiologists said, speaking on the condition of anonymity. “The ICMR has a task force headed by a paediatrician, a cardiologist, and a pulmonologist. They are clinicians with no background and training in epidemiology but are leading the task force. It has become a rubber stamp for the government’s decisions.” Vinod Paul, the chairperson of the task force, is a paediatrician by training. Balram Bhargava, the director general of the ICMR and a co-chair of the task force, is a cardiologist. Randeep Guleria, the director of the All India Institute of Medical Sciences, New Delhi and a member of the task force, is a pulmonologist.
“There is a total opacity as far as data is concerned,” the epidemiologist told me. “Whatever is being put in the public domain is suspect, and the conclusions and inferences drawn from it are erroneous.” He added that there is no communication between the IDSP and the ICMR. “Both are holding on to their own data. Information is power and nobody wants to share it. If made available to the public or at least the researchers, it would have informed them where the epidemic is heading, and what are correct remedial measures.” According to a second epidemiologist who also wished to remain anonymous, the situation was effectively a turf war between the NCDC and the ICMR. “The left hand doesn’t know what the right hand is doing,” the epidemiologist told me. “It is a cliche but it’s true.”
While it remains unclear why the NCDC and the health ministry have withheld the information collected by the IDSP, the result has been a complete information blackout. Data is acrucial ingredient of a pandemic response, and in a rapidly evolving situation as with COVID-19, it is especially vital for day-to-day decision-making. Yet, according to a third epidemiologist, who is working with the ICMR, the NCDC has access to ICMR’s data, but not vice versa. But even the ICMR’s testing data has not been made available to academic partners such as the All India Institute of Medical Sciences and other medical-research institutions.
The withholding of this information has left the government’s academic partners, scientists and researchers in the dark about the scale of the pandemic and how to respond to it. For instance, a national scientific task force, which was constituted to advise the central government, had appointed a research group of epidemiologists to track the spread of the virus in India. But due to the NCDC not publishing any report, the research group has been working without access to critical data gained from IDSP’s surveillance units. Most pertinently, it does not have data about the contact tracing that has been conducted since India’s first COVID-19 outbreak, on 30 January.
The lack of data has a cascading effect in terms of India’s testing policy as well. The withheld data includes contact-tracing information and data from surveillance of influenza-like illnesses, both of which are important for epidemiologists to understand the course of the virus and predict future trends that could potentially save lives. According to the scientists and epidemiologists I spoke with, this failure to share data was at the core of India’s failing containment measures.
“You want to know why containment measures have failed?” the second epidemiologist asked. “Because we did not follow every person who was a primary contact, test, isolate her in time. Testing has been done, result has not come, so tracking has not been done and it has fuelled the epidemic. It takes up to 14 days to get test results, and in that time the person is already transmitting the disease in the community. That is why there is widespread community transmission right now.” As cases mount, Karnataka, Delhi, West Bengal, Madhya Pradesh, Maharashtra and Telangana have all reported a testing backlog.
Throughout medical history, pandemics have been successfully contained by governments that relied on data gathered by surveillance systems like IDSP, followed by rapid data collection, analysis, assessment and timely reporting. In the early 1850s, London was battling a rampant rise in the number of cholera cases. It was a doctor, John Snow, who mapped the cases in the neighbourhood, pinpointed a single water pump as the source of the outbreak, and had its handle removed, ending the cholera epidemic. His research is considered ground-breaking and changed the way scientists investigated and treated epidemics across the world, earning him the title of the father of modern epidemiology.
In India, well over a century later, government agencies are withholding data in the midst of a public-health crisis. Unlike most countries, where the respective CDCs are leading the pandemic response, in India, the response is led by a research organization: the ICMR. “This is not their job,” a third epidemiologist, who also requested anonymity, told me. “The NCDC is built to track epidemics. Where are they? Every country has their CDC leading from the front, except India.”
This data is also crucial for scientists, who can use it to replicate and build upon each other’s work. But the Indian government appears to consistently reduce the data it is willing to share. On 28 April, the ICMR stopped sharing testing data in the daily press briefings. One week later, the health ministry announced that it would only update its website with the number of cases “once a day in the morning instead of twice a day, as being done presently. All concerned may please note.” It offered no explanation for this shift in policy.
I did not receive any response to emails sent to the health minister’s office, the ICMR’s chief, Bhargava, and Sujeet Kumar Singh, the NCDC and IDSP director. The report will be updated if and when they respond.
The pandemic is spreading as information required to fight it continues to be withheld. In fact, by virtue of stopping its weekly reports, the IDSP has not only withheld COVID-19 data, but also updates on the outbreak of other diseases, such as chikungunya, dengue, mumps and measles, in the country. As a result, a frustrated medical community lies between the warring factions of India’s scientific bodies, without information needed to fight several diseases, including Japanese encephalitis, for instance, which made national headline in 2017 after over a hundred infants died from the virus in Uttar Pradesh’s Gorakhpur district. The transmission of Japanese encephalitis normally begins in May.
This year, in addition to responding to a pandemic, India’s doctors will also have less information and fewer resources to fight all the other diseases tracked by the IDSP. If the surge of COVID-19 infections and India’s history with these other diseases are any indication, the cost of NCDC withholding this data will be measurable by an increasing loss of human lives that could have been saved. As of 8 am on 12 May, India had recorded 70,756 confirmed COVID-19 cases and 2,293 deaths.
Correction: An earlier version of this article incorrectly identified Anthony Fauci as the head of the United States' Center for Disease Control and Prevention. The Caravan regrets the error.