THAT’S HOW Napoleon the pig laid out the rule governing all animals in the farm, in George Orwell’s 1945 classic Animal Farm. Sixty-seven years later, that rule of inequality holds as true for the people of India.
Nowhere is this inequality more apparent than in the case of healthcare and its distribution among those who can afford it, juxtaposed with those who either cannot or don’t even have access to it. In Ganiyari, rural Chhattisgarh, patients throng the clinic run by the Jan Swasthya Sahyog in hundreds not only from neighbouring Bilaspur and surrounding districts, but also from districts in eastern Madhya Pradesh. The enormous distances these patients travel speak eloquently of the lack of availability of affordable and dependable healthcare in the region.
Having worked closely in this area for the past 12 years, we have been given a chance to observe what is happening around us in health and other areas; and to advocate for what we feel needs urgent attention. Falciparum malaria, or cerebral malaria as it is commonly known, is just one case in point; there are other deadly diseases that plague the parts of India, which almost don’t exist for the mainstream. Our collective societal inability to handle falciparum malaria epitomises the structural violence that poor rural people have to pay the price for.
There is a widely held myth that affects not only attitudes in the health system and actual practice, but also policies — that due to good air and water and good food, people in rural areas suffer from relatively simpler ills that would require a minimalist package of healthcare. On the contrary, what we have seen is a prevalence of all illnesses, many of which are multi-drug resistant. For example, infections like tuberculosis, falciparum malaria, leprosy, cholera, severe soft tissue infections, and severe respiratory and intestinal infections, are clearly in numbers that are unmanageable. Non-communicable diseases, or ‘lifestyle diseases’ as they are also known, such as rheumatic heart diseases, cancers of cervix, stomach, oral cavity and breast, mental health problems, hypertension, and finally, diabetes among people with low body weight, are also seen in equally large numbers. We haven’t seen these illnesses being associated with any ‘nutrition transition’ — the only ‘lifestyle’ that one can attribute this to is one of poverty. This is a microcosm of rural India, where poverty and chronic hunger are the biggest ailments.
Perhaps the largest ‘health problem’ that we see is of rampant undernutrition, a polite term for chronic hunger. More than 70 percent of children below the age of three, and more than half of all adults in this part of rural Chhattisgarh are undernourished. Shockingly, these numbers don’t elicit much outrage. On the contrary, due to the sheer number of undernourished people we see around us, there is a normalisation of hunger in our eyes. We know that those who are undernourished are also not able to work as much — a woman who weighs 40 kg can’t labour as much as a woman who weighs 50 kg — which clearly affects her ability to earn. What looms even less in the national consciousness is that the same woman’s chance of contracting an illness like tuberculosis or dying from falciparum malaria is more than twice as high as a better nourished woman.
There is a widely-held myth that due to good air, water and food, people in rural areas suffer from relatively simpler ills, and hence require minimal healthcare
Besides these, there are various dangers that plague people in rural areas — snake bites, or being bitten by rabid animals and scorpions. Understandably, because of the greater mananimal interaction, the number of such incidents is much larger in villages but deaths due to them are clearly related to poor health systems. In Bilaspur alone, more than 100 people die of snake bites every year.
A large portion of the blame has to go to the state of our public health systems. It has, for instance, been well known that Anopheles mosquitoes that breed in stagnant water transmit the parasite by biting people who stay in the vicinity, to cause malaria. But it is the health systems that determine its extent and lethality. Inasmuch, all epidemics and deaths are systemic or man-made.
To someone who has seen all these from close quarters, rural health has always been marginalised. Till date, save a few illnesses, we don’t have good data on the burden of most illnesses people suffer from. We still don’t have any class and nutritional status data for most illnesses! The academic medicine set-up in this country has largely failed the people. How did we decide that most hospitals should be in cities and only health centres with a modicum of curative care in rural areas? Do people in cities fall sick more frequently or with more serious illnesses? Why are there almost no rural blood banks?
An international research study in 2010 found that up to 2 lakh people die due to malaria every year in India, a figure 20 times higher than the official statistics
Timely access to health services is a critical determinant for good outcomes in healthcare. Sadly, this fact has not been realised by many states. Chhattisgarh, Jharkhand and Odisha have all disbanded their transport corporations and handed over rural transport to private operators. After cost-benefit analyses, these states concluded that these services were not viable. It is doubtful whether they calculated affordable access by people to essential services such as healthcare in their balance sheets. One look at the state of rural transportation and you realise the immense dependence of people in these states on the whims and fancies of private bus operators for seeking healthcare. Introduction of emergency ambulance services under the very expensive (to the state) public-private partnership model increases access in emergencies, but what about the much larger need for routine care-seeking? There is a huge imperative to restart state-operated transport services if we really want to improve healthcare.
Like other human development systems, public health systems are also vulnerable to macro processes. It is there for everyone to see that the root problem plaguing public health systems is the lack of underpinning of equity concerns in it. We have one system for the poor, and another one for the not-so-poor. Falciparum malaria is clearly the problem of the ‘other’ people.
While Chhattisgarh accounts for only 2 percent of the country’s population, it accounts for at least 14 percent of the national burden of falciparum malaria. These are also the areas where forest cover is dense, accessibility of all services, including all types of health services, is minimal, food is scarce, accountability even less, and people are poorer. It is hardly surprising that those in major metros don’t understand the gravity of this illness because they hardly ever suffer it.
THE EXTENT of suffering aside, numbers have their own story to tell. Even today, there is a clear attempt to downplay the total number of malaria patients. In a situation where over 75 percent of all care in rural central India is provided by informal practitioners, the entire estimation of the burden of malaria is done from the records of the government’s health systems, and thus only a fraction gets recorded. Further, for a death to be reported as due to malaria, a person’s blood smear test has to be done and reported positive for the parasite from a government lab; even death has to take place in a hospital. Even if this happens, the cause of death could easily be recorded as jaundice or liver or kidney or respiratory failure. All of these are common complications or pathways to a death due to malaria, and all these deaths should rightly be attributed to malaria. As a result, deaths attributed to malaria are ridiculously low.
Ask any expert and he will tell you that in actual field situations, at least 1 percent of all people with falciparum malaria will die. Official figures for 2010 show that the overall death rate among all cases of falciparum malaria was 0.1 percent in the country and 0.04 percent in Chhattisgarh. The respect for each death must include at least keeping a count of it, as well as correctly attributing its cause. Till we report each episode and each death, how can we plan for its control? When findings from an international research study in 2010 proclaimed that up to 2 lakh people die due to malaria every year, a rate 20 times higher than the official figures, a squabble resulted over the numbers.
In late 2010, central India suffered a major epidemic of falciparum malaria, with several districts in many states reporting a large number of deaths. Many professionals in the region’s government and private hospitals commented that they had not seen such a ferocious outbreak in the past 10 years. Jan Swasthya Sahyog documented a four-fold increase in both cases and deaths in its community outreach area. To better understand the problem, causes of deaths among those who had fever in a particular area of Bilaspur district were documented. In a district of 26 lakh, the Kota block in Bilaspur has a population of 2.13 lakh. We documented 180 deaths due to fever in the period between 20 August 2010 and 31 January 2011, of which 85 percent (153 deaths) could be attributed to malaria by the verbal autopsy method. Eighty percent of these deaths were among Adivasis, and over 70 percent happened at home or on the way! The official death count due to malaria in the entire Bilaspur district that year was 9. An educated conjecture will put that count to well over 500 people in 2010 in Bilaspur alone. Tragically, yet not surprisingly, the famed and well-funded Integrated Disease Surveillance Programme failed completely to pick up this epidemic.
Plasmodium falciparum causes malaria, but we determine its lethality. Other nations have overcome this scourge through equitable health systems
WHY THIS conspiracy of silence? Why can’t we report malaria deaths honestly? Are field workers likely to be pulled up if they tell the truth? We have talked to several officials and experts working with research institutions and the WHO, who all wrung their hands in helplessness without answering the question: ‘who dictates this fear’. While every death due to swine flu gets a three-column mention in the front pages of many newspapers, a 100 malarial deaths don’t even get 100 words in print. Malaria deaths start where political power ends.
Falciparum malaria control requires a multi-pronged strategy. In the early stages, death rates can be as low as 0.1 percent with effective treatment. If not diagnosed in time, as many as 30 percent of these patients can get vital organs like brain, kidney, lung or liver afflicted and then it is called severe malaria. At this stage, even with the best of available care, at least 10 percent would die. Thus the most effective strategy to prevent death and disability is to diagnose and treat early. And this is where our public health systems fail. In the above-mentioned epidemic in 2010, over 70 percent of the people who died had contacted a health provider and had got a blood test done, and had been sick for over four days, suggesting that there was ample window for intervention. Yet, they received inappropriate care and died. Clearly, health systems had failed these people. Control measures like indoor residual spray with insecticide and provision of bed nets for each person is the stated responsibility of the state, and yet it has been found that these had completely failed in 2010 in Chhattisgarh despite a massive infusion of funds for mosquito-borne illnesses a year before the aforementioned outbreak happened.
While control of malaria requires efficient measures at the community level, when you get severe malaria, the highest level of care is required to save lives. A person in such a situation requires reaching a competent hospital as soon as possible, where intensive care should be possible. Frequently, blood transfusions and dialysis and sometimes, artificial respiratory support is necessary. Areas that come in the malaria map are such that these facilities are least likely to be available. Isn’t this the responsibility of the state to not only have these at least at each district level, but also to make them available to people free of charge? In the absence of this, the 10 percent death rate in severe malaria will jump to 100 percent, to result in what Paul Farmer in Haiti refers to as ‘silly’ deaths.
Perhaps the most poignant of all malarial illnesses is to see a pregnant woman die of it. Women with child have a five-time higher chance of dying due to malaria than a non-pregnant counterpart. In 2010, in Bilaspur alone, as many as 13 deaths could be attributed to malaria, all of who were pregnant women. It is important that control measures are prioritised for pregnant women. Yet, the prophylaxis that the government offered to pregnant women previously has been withdrawn; the bed net distribution is still very tardy, endangering all pregnant women in far-flung areas.
The link between hunger and malaria deaths is not new. Studies in British India over a century ago showed that in the Punjab, deaths due to malaria were significantly more in the years when food was scarce. The lesson we have failed to learn is that unless we address the situation of pervasive chronic hunger, the vulnerability to tragic outcomes in malaria will continue unchecked, regardless of whatever technical fixes we introduce.
Finally, why does this structural violence happen? The answer lies in the deeply unequal society we are today. The development of healthcare services — in scope, quality and monitoring — has been guided by this class consciousness. Until we have a strong underpinning of equity in our system, same regard for life and death, similar infrastructure for health and healing, ensuring same skillsets, equal interest in implementing control measures and in doing surveillance of processes, we are not going to change this situation. Plasmodium is a very adept creature, true, and has been around for 2,500 years. But several countries and areas have overcome this scourge only when they actively developed equitable health systems.
Ironically, it is this gross inequity, which Tarun Sehrawat wanted to capture and highlight, deep in the Abhujmarh forests of Chhattisgarh, that brought about this cruel fate. Let us hope, his death does not go in vain.
Dr Yogesh Jain, MD Pediatrics from AIIMS, is a public health physician at Jan Swasthya Sahyog, a group of health professionals in Bilaspur, Chhattisgarh, running a community-based model of primary healthcare