How the poor die
More than 15 years into its existence, the country’s “revamped” public health surveillance still lacks coordination and adequate resources and is ridden with significant gaps in the monitoring of many infectious diseases.
FOR THE HUMAN RACE THAT HAS SEEN approximately 100 billion of its species die in the past 50,000 years, death is an inescapable reality. What has changed now is its enhanced ability to systematically track down death to specific causes. With its nationallevel tracker for COVID-19 deaths, India has perhaps for the first time launched a daily tracker for deaths caused by a disease. However, the current conjuncture reveals an unsettling fact: while certain diseases gain singular prominence by attracting funds for exhaustive scientific research and treatment, many others are neglected as “ordinary”. In this light, the actual disease burden of a population is highly underexplored because several ailments and illnesses fail to be identified as specific diseases with a definitive cause (aetiology). Given the darkness surrounding many illnesses, it is essentially symptomatic treatment that is administered to patients.
CONSPIRACY THEORIES
The identification of diseases and the spread of old as well as new diseases requires robust disease surveillance and expansive public health-care facilities. Unfortunately, there are systemic problems with the existing disease surveillance. Piecemeal disease surveillance often paves the way for conflicting assessments and opacity about the origins of disease outbreaks so much so that conspiracy theories soon take root. It is in this regard that even certain reactions to the COVID-19 outbreak may be contexualised.
For instance, shortly after the United States saw a spurt in COVID-19 cases earlier this year, President Donald Trump unleashed a bitter volley of accusations against China that it had concealed information about the novel coronavirus outbreak in Wuhan (China). In some quarters, COVID-19 has been projected as an engineered outbreak and the virus as one that has been produced in a laboratory. Considering that this is the U.S. presidential election year, many political commentators have labelled Trump’s accusations as part of an unsavoury attempt at jingoistic politics and to divert attention from his mismanagement of the COVID-19 outbreak in the country.
The allegations were accompanied by Trump’s formal announcement about ending the U.S.’ membership in the World Health Organisation (WHO) and withdrawal of $450 million it grants to the WHO as financial support. Accusing the WHO of being “controlled” by China, the U.S. government claims it will channelise its funds towards other global public health organisations. Such aggressive posturing by the U.S. conveniently sidesteps the important contribution of the Chinese disease surveillance system in identifying the new disease. What if China had not identified the virus strain and derived a definitive aetiology for the new disease from amidst a host of symptoms that are common to other known contagious and severe respiratory diseases?
Moreover, it is important to recognise the most recent compromises the U.S. government has made with respect to disease monitoring, such as a two-third deduction in funding for the country’s Global Health Security Agenda, which was introduced in 2014 with the aim of setting up an early-warning system for infectious diseases across the world. Likewise, the Trump administration almost discontinued the $200 million epidemiological research programme, PREDICT, that is funded by a grant from the United States Agency for International Development (USAID), but the COVID-19 pandemic compelled it to extend funding temporarily for six months beyond March 2020.
By then the damage had been done, with many scientists, including those researching in China, been laid off just before the Wuhan outbreak. Set up in 2009, PREDICT, with its focus on locating viruses with the potential to cause human disease and pandemics, has been engaged in regions like the Amazon Basin, South and Southeast Asia, and the Congo Basin. All these recent measures stand to affect not only the American population but also weaken ongoing intergovernmental disease
monitoring tie-ups across poorer regions of the world.
Class, region and other social dynamics are crucial factors that steer the thrust of disease monitoring/surveillance across the world. The adverse medical conditions prevalent among the labouring poor and the less-wealthy regions do not get adequate attention because of their insufficient signalling effect on private pharmaceutical companies, and also because governments do not assign priority to the general health care and diseases of the poor. The profit-oriented pharmaceutical industry controls the lion’s share of funding for scientific research. Its funding priorities determine the quantum of funding and thereby shape the scientific community’s interest in certain diseases over others, stunting in the process the potential and quality of research carried out by the majority of scientists. In other words, the pharmaceutical industry tends to set the health agenda for intergovernmental agencies and influence the institutional priority of governments with respect to the scope and direction of scientific research.
This unfortunate reality is best captured by the growing dominance of the vertical model of health intervention wherein powerful donors (internationally recognised foundations), intergovernmental agencies and pharmaceutical companies, eager to promote certain drugs, dictate what constitutes as health exigencies for a country. The vertical health model propagates a surgical mode of intervention on a singular disease, leaving the collateral damage unaddressed, i.e. increasing fatality rates of numerous other debilitating diseases and illnesses prevalent within a population, which only horizontal health intervention or an expansive public health-care system can resolve. The fallout of this is that while some diseases gain singular prominence and are declared epidemics/pandemics by the scientific community, scores of infectious diseases and illnesses affecting largely the poor are brushed aside as “ordinary”. As the U.s.-based medical practitioner Siddharth Mukherjee aptly puts it in his award-winning book, The Emperor of All Maladies, “A disease must win politically to win scientifically.”
NARROW FOCUS
Given the increasingly narrow focus on specific communicable diseases and the consequent skewed channelisation of resources, the process of neutral discovery of a disease rarely unfolds. For one, a significant number of clinical cases that can be captured by a disease surveillance system are not even made out, considering that the infected poor and marginalised people do not necessarily report their condition to certified doctors; they fall prey to quacks who are more easily accessible to them.
The dismal scenario with respect to fake doctors was exposed in a 2016 WHO report, which claimed that 57 per cent of the allopathic “doctors” in India in 2001 did not have any medical qualifications. The report further said that 31 per cent of the allopathic “doctors” in urban India were educated only till Class 12, while rural India had access to only 18.8 per cent allopathic doctors with proper medical degrees.
Even when infected persons report their ailments to public health institutions, an overburdened system often averts the essential testing of their blood/serum, throat swab, sputum, stool, urine, and so on, and restricts diagnosis to symptomatic treatment. If clinical cases lead to microbiological or cytological investigations, the tendency for pathology laboratories to categorise diseases on the basis of pregiven classification and parameters is so predominant that differentiating and separating pathogens on the basis of variations in groups, subgroups, and strains in genotype is minimal.
This way many pathogens are wrongly categorised into existing classificatory schemes, and the specific cause behind numerous diseases and ailments fail to be identified and differentiated. Many ailments are then simply clubbed together under catch-all categories such as “Respiratory Tract Infection”, “Urinary Tract Infection”, “Fever of Unknown Origin”, and “Acute Febrile
Illness”. Some of these diseases are on the rise, and many are more contagious and fatal than diseases that gain prominence. However, given the incomplete diagnosis, it is at the most symptomatic treatment that is made available to the common masses, leading to the persistent spread of the disease and continuous heavy loss of life.
TB, AN UNDECLARED SILENT EPIDEMIC
Even when the aetiology of a contagious disease and its treatment are well known, the disease’s prevalence does not generate adequate reaction among the people concerned. Tuberculosis (TB), a disease generally associated with the poor, is an apt example. Sources highlight that every 10 seconds a person contracts TB, pointing to a very high R0 (basic reproduction number) for the disease. With four to five lakh persons succumbing to the disease every year in India and with more drug-resistant cases being reported yearly, TB has had not only a higher mortality rate than COVID-19 so far, but is clearly an undeclared persistent silent epidemic. Furthermore, there is an urgent need to recognise the issue of comorbidity, that is, the possible combination of preexisting medical complications with diseases that plague the majority of Indian people. Expectedly then, an eventuality of the ongoing pandemic is dying with rather than of COVID-19. The other eventuality is the neglect of coexisting diseases, which points to a situation where many poor people, if not succumbing to COVID-19, are dying from the rising fatality rates of other diseases. Evidently, the Indian population is falling prey to the sinister synergy between coexisting diseases and the vulnerability fostered by the overall functioning of our socio-economic system.
Considering the social dimensions impacting scientific inquiry and the resulting prevalence of undifferentiated and downplayed diseases, what could have unfolded if the Chinese disease surveillance system failed to tap the outbreak of the novel coronavirus and differentiate the aetiology of the outbreak? Among the most probable consequences would have been the misidentification of the disease’s symptoms and aetiology with existing severe and acute respiratory diseases that otherwise trigger mass hospitalisations and a significant number of deaths in many parts of the world. Case studies from Italy and the U.S. highlight that the COVID-19 death toll has been predominantly confined to elderly persons of the same age group who usually succumb to influenza (flu), pneumonia and similar diseases. For a typical flu season, COVID-19 nonetheless quickly caught the attention of governments in the West mainly because the population that was infected initially turned out to be well-to-do travellers. If this had not been the case and if China had not identified and differentiated COVID-19 from a host of similar diseases, COVID-19 would have in all probability gone under-reported as a somewhat unusual long spell of flu or pneumonia deaths.
THE SURAT OUTBREAK
Outright non-identification, mistaken or undifferentiated identification of diseases, and downplaying of disease outbreaks are the ingrained reality of the existing disease surveillance systems. In turn, the opacity bred by mainstream epidemiology and disease surveillance systems allows for marked contestation. We have seen this in the context of recent and older disease outbreaks. The so-called “pneumonic plague” outbreak in Surat, Gujarat, in September 1994 is an important instance of the ambivalence that accompanies disease analysis and the conflicting interests that play themselves out in disease outbreak reporting.
The Surat outbreak reflected the frictions that exist between member-states and the WHO. At that time, the WHO was carving out a new role for itself in the context of the growing dominance of economic liberalisation policies which pushed for less public involvement in health-care services, the shrinking of the WHO’S traditional funding sources, and the competition posed by well-funded health programmes of the World Bank and the United Nations Children’s Fund (UNICEF). Through a somewhat unprecedented interventionist role in Surat, triggered by the pressure mounted by India’s affluent trading partners, the WHO sought to make an example of the epidemic and assert the importance of enhanced disease surveillance at the global level. Interestingly, WHO officials maintained a relatively ambivalent position on the cause of the outbreak. The WHO Team Executive Report claimed: “Yersinia pestis is the likely causative agent of the Surat outbreak…. [However] the identification of plague as cause of the outbreak cannot be established in the absence of confirmed isolation… from clinical materials….” Meanwhile, the National Institute of Communicable Diseases, New Delhi,
confirmed that the outbreak was the plague whereas the Gujarat Chief Minister denied the plague thesis, claiming that it was more likely to be pneumonia.
The Indian government interpreted the WHO’S intervention as the undermining of the sovereign realm of state authority. It set up its own Technical Advisory Committee (TAC) that ran a parallel investigation to that of the international team constituted by the WHO on October 7, 1994. The TAC attributed the aetiology of the so-called pneumonic plague to Yersinia pestis, although it had to also acknowledge that its assessment was based on preexisting and contaminated cultures. It also sought to establish that the genetic mutation indicated the external origin of the strain, thereby projecting the emergence of a new disease whilst challenging the notion of poorer countries being the sites of disease and contagion. The outbreak was consequently connected to the enhanced mobility of disease vectors in a highly globalised world of trade, business and commerce, as well as to a possible act of bioterrorism. The politics of locating the origins of the outbreak stemmed from the Central government’s preoccupation with regional tensions involving hostile South Asian neighbours, who were allegedly antagonised by India’s bid to integrate with the globalised world economy.
The Gujarat government tabled a different assessment. The Gujarat Expert Plague Committee’s report questioned the Indian government’s assessment of the plague diagnosis and attributed the origin of the outbreak to internal issues of hygiene, unplanned industrialisation and social deprivation. Interestingly, conflicting assessments allowed for the labelling of over 6,000 cases as plague cases whereas they were actually due to other diseases. Taken together, the diversity of views revealed the ambivalence surrounding the origins of the disease outbreak and the inadequacy of sample data, both of which highlighted the acute need for a more robust disease surveillance system. Not surprisingly, the Surat outbreak became a crucial example worldwide and compelled the TAC itself to acknowledge the need for a new, integrated surveillance and response network in the country.
CHALLENGES OF DISEASE SURVEILLANCE
A dedicated disease surveillance programme in India was established in 1997 under a pilot project known as the National Surveillance Programme for Communicable Diseases (NSPCD), which started off in five districts and was later expanded to 101 districts by 2004. The nodal agency of the NSPDC was the National Centre for Disease Control (NCDC), New Delhi, and the implementing agencies were States/union Territories. The programme was based on weekly reporting of outbreaks of epidemicprone diseases (including nil reporting) directly from districts to the higher centres. However, the NSPCD failed to give a complete picture of disease burden in the country, given its limited coverage of districts and inadequate resources for the creation of an expansive database of diseases and epidemic outbreaks. In 2004, the country’s disease surveillance transitioned into the Integrated Disease Surveillance Programme (IDSP), which was initiated under the World Bank’s financial assistance of $68 million. By 2012 the World Bank’s funding for the programme was stopped, after which the IDSP continued under the Twelfth Plan as part of the National Health Mission with a budget estimate of Rs.640 crore. The annual budgetary allocation from 2012-13 to October 2017 has varied from approximately Rs.33 crore to Rs.65 crore.
More than 15 years into its existence, the country’s “revamped” public health surveillance still lacks coordination, adequate resources, and is ridden with significant gaps in the monitoring of many infectious diseases. Even in the ensuing context of the COVID-19 pandemic, disease reporting under the IDSP has floundered as the Central and State governments have enforced singular focus on COVID-19. Out-patient department (OPD) services and surgeries were drastically reduced in March 2020 when there were only a few hundred cases of COVID-19 in the country, and disrupted public healthcare services have persisted despite the realities of comorbidity and actual disease burden of the common masses.
Ironically, in a country reeling under malnutrition and delayed treatment of the sick, among other adverse effects of a lengthy and poorly managed lockdown, the IDSP has failed to trace the actual disease burden of the population, as is evident in its lack of reporting of disease outbreaks since March 22, 2020. The IDSP’S inadequacies are linked to the general limitations of the country’s public health policy and overburdened public healthcare infrastructure. For one, centrally-implemented health programmes continue to focus on vaccine-pre
ventable infectious diseases even as other infectious diseases fail to be systematically controlled. As noted in the Draft National Health Policy (2015), the communicable diseases that national health programmes seek to address represent less than 25 per cent of all the communicable diseases in existence and less than 6 per cent of overall reported fatalities.
This apart, the country’s disease monitoring is hampered by specific problems such as limited funding; a scattered and inadequate laboratory network; lack of trained manpower; insufficient use of ICT (information and communications technology) for data collection, analysis and transmission; existence of a number of parallel systems under various vertical health programmes; inadequate use of routine data; and limited use of nonspecific health indicators or proxy measures like trends in drug sales, use of emergency services, etc., which some health experts consider as an important back-up to laboratory-testing surveillance.
In the IDSP’S own annual reports, the inadequacy of funds gets reflected in the diversion of funds from other accounts/heads to the IDSP and vice versa from the IDSP to other programmes under the National Health Mission. For example, in 2010-11 an additional grant-in-aid was extended by the IDSP to the north-eastern States by diverting Rs.5.40 crore from the Rural Family Welfare Services head, indicating a reallocation of resources from an equally fundamental civic welfare programme. The limited funds for what needs to be a much more expansive and vigilant disease monitoring system has resulted in inadequate strengthening or upgrading of laboratories that are linked to the IDSP network. To date only 114 laboratories at the district level have been strengthened for diagnosis of epidemic-prone diseases.
Needless to say, the practice of upgrading district public health laboratories in a “phased manner” has meant additional burdening of established laboratories of medical colleges and other major centres in the States/ Union Territories. Of course, the focus on district public health laboratories also tends to overlook the need for vigilant community level disease monitoring, for which neither can primary health centres (PHCS) and community health centres (CHCS) be left out from the necessary upgradation process, nor can the existing training of overburdened front-line health workers such as auxiliary nurse midwives (ANMS), multi-purpose health workers (MPHW) and accredited social health activists (ASHAS) be considered adequate for extensive and accurate data collection. Upgraded PHCS and CHCS as well as adequately trained front-line health workers mean better equipped local level disease surveillance.
Importantly, studies have identified that the lack of adequately trained front-line health workers and technical staff clearly affects the alertness of the surveillance system. A 2014 study published in the Journal of Family Medicine and Primary Care examined 24 sub-centres that come within the rural field practice area attached to the Post Graduate Institute of Medical Sciences, Rohtak, Haryana. It was noted that 70 per cent of the staff could not expand the abbreviation “IDSP”; 91 per cent were unaware of trigger levels; 93 per cent were not aware of nil reporting; and only half the number of sub-centres were actually filing written records according to defined syndromes, indicating the lack of awareness among the staff about the utility of their reporting.
LACK OF EXPERTISE
From the IDSP reports it is also evident that district laboratories themselves lack trained manpower, i.e. microbiologists, epidemiologists, technicians, laboratory assistants, and so on. This worrying lack of expertise is the fallout of the long-standing trend of inadequate state investment in the education sector which generates skilled human resources for the economy and society. The country lacks dedicated educational programmes and institutions that can produce trained epidemiologists, among other specialists, for data analysis of diseases and policy framing, which are crucial components of an efficient disease surveillance system. Since the launch of the IDSP under World Bank funding in the early 2000s, the acute shortage of epidemiologists has been met by appointing personnel with an educational background in public health, statistics, communicable diseases, and social work, who are then subsequently trained in the working of the IDSP. Usually medical graduates with a postgraduate degree or work experience in public health, preventive and social medicine or epidemiology are preferred for positions of epidemiologists.
The lack of dedicated educational programmes is aggravated by interdisciplinary rivalries between medical sciences on the one hand and public health and community medicine on the other. The Medical Council of India (MCI), for instance, recognises the Masters in Public Health (Epidemiology) course of solely two institutions in the entire country; namely, the National Institute of Mental Health and Neurosciences, Bengaluru (offering 10 seats), and the All India Institute of Hygiene
and Public Health, Kolkata (offering seven seats). Meanwhile, a handful of other private and public-funded institutions that do not feature in the MCI’S database offer this particular master’s programme and a diversity of allied courses.
Overall, the existing structure hints at the serious lack of standardisation in the educational training of epidemiologists, which is detrimental to the growth of such expertise, especially when combined with the relatively low remuneration for epidemiologists. Recent news reports on the country’s ill-preparedness for tackling the COVID-19 pandemic have rightly highlighted that the lack of experts such as epidemiologists is linked to the IDSP’S preferred practice of recruiting for non-tenured positions. Such non-tenured positions allow for lowpaying, unrewarding work conditions, and trigger the preference among qualified experts for employment in private pharmaceutical companies and global agencies.
CONCLUSION
Some experts have rightly emphasised the embedded proximity of several microorganisms to human life. In the case of disease-causing microbes or pathogens, this means that infectious diseases and their outbreak have been an intrinsic part of human civilisation. However, human society has increasingly learnt to liberate humankind from disease, and its corollary, death. Unfortunately, the endeavour is often compromised by systemic reasons and the biases integral to the dominant socioeconomic system within which scientific research is carried out. We are constantly confronted by the lack of preparation in meeting the challenges posed by diseases and their outbreaks.
The ill-preparedness can be addressed by augmenting the health conditions of the common masses and the health-care facilities of the country. It is also imperative to question the existing parameters of disease monitoring, which is currently far from an objective exercise. Many diseases plaguing the working masses and backward regions are not even differentiated and identified by the existing scientific community. Even if a disease is discovered with a definitive aetiology, we find that the order of priority given to it and the launch of appropriate disease control are based on whether it has a certain signalling effect for the scientific community. In a large number of instances, it is only when there is a threat of transmission to the well-to-do sections of society or wealthier regions that the disease actually has such a signalling effect.
Science does not exist in isolation but is actively shaped by contemporary social dynamics. Professional scientists do not pursue research in a bubble, and their subjective biases negate the very idea of the self-sufficient character of science. Controlled by increasing specialisation and growing demands for funding and output, only a limited number of scientists build conceptual frameworks and pursue empirical research with an ear to the ground. It is thus imperative to bring the social question back into science for which we need greater interface between scientists and social scientists, as well as between the existing health-care establishment and people’s movement. These interfaces are crucial for delinking scientists from prevailing prejudices and for asserting the marked distinction between the “specialist and a real seeker after truth” (Albert Einstein, 1944). It is through these interfaces that we can lay bare the skewed relationship between social epistemology (ways of knowing) and epidemiology in order to build pressure on state agencies to take active cognisance of diseases and illnesses that they have been neglectful of. m Maya John teaches at the University of Delhi and is working on the history of epidemics and epidemiology.