At Jan Swasthya Sahyog, a rural hospital in Chhattisgarh, we see numerous cases of tuberculosis every year, but it is becoming increasingly clear that our approach to the epidemic is all wrong. We recently took care of a 22-year-old patient we will call Leela Satnami.
While Satnami was undergoing treatment, one day, her health started to deteriorate rapidly. She required intubation and eventually died. Our group of infectious disease colleagues, internists, and family medicine residents discussed Satnami’s case with great fervor. We analysed everything, from the damage to her lungs to whether her medications were appropriate.
But all this discussion, as intellectual as it was, missed the forest for the trees. We had glossed over the fact that Satnami had been sick for one year, she was severely underweight, and her home was a six-hour bus ride away from our hospital.
Why did she wait so long to seek care? Why did she travel so far when there were dozens of health centres between her and us? What barriers did she encounter? Was it lack of money? Did her gender give her less agency? These are the questions we should have been asking instead of discussing her biology. The answers to these will lead to the structural change required to prevent the next tuberculosis-related death.
Campaigns to eradicate tuberculosis have largely taken a vertical approach – focussed on early case detection, direct observation therapy, and drug development for resistant strains, while ignoring the importance of a robust health system. Government facilities such as primary health centers are chronically understaffed with high absenteeism rates and lack basic supplies. Private practitioners driven by profits are sparingly present and are out of financial reach for people like Satnami.
Informal practitioners in the community, the most common primary care providers in rural India, are ignored and unsupported by policymakers. Consequently, people are forced to travel hours for routine healthcare. Patients like Satnami are not ignorant – the decision not to seek healthcare is a careful calculation. Going to a primary health centre provides no benefit and travelling to a secondary care center often takes so long that it does not justify the wages lost in that time. Eventually, the severity of the disease worsens to the point that the mental cost-benefit analysis now favours seeking care, and we see patients at the end stages of disease.
As important as health systems are, the greatest impacts on the fight against tuberculosis, historically, do not involve medicines at all. The mortality from tuberculosis in the western world had begun to decline starting in 1860, long before anyone even knew what caused it and nearly 100 years before the first treatment became available.
The British physician and epidemiologist, Thomas McKeown, argued this is evidence that the major declines in mortality over the past century and a half have come not from advances in medicine, but advances in economic growth and the resultant improvements in standard of living. McKeown’s primary proxy for economic growth was better nutrition. Certainly, this is applicable to Satnami and tuberculosis in general. Data from our institution as well as others show that patients with severe undernutrition have increased rates of death from tuberculosis.
However, there exist other proxies for economic development as well: stable housing, improved sanitation, income security, employment, connection to services via public roads, and education, to name a few. Housing and sanitation both speak to general living conditions, which may affect a person’s chances of acquiring tuberculosis, but also increase the severity of disease if that person is chronically battling other environmental assaults, such as repeated bouts of diarrhea, intestinal worms and dust inhalation.
Income insecurity and unemployment lead to forced migration, often to urban areas where the disease is more prevalent and housing is overcrowded, allowing for rampant transmission. This mélange of social determinants leads to epidemics such as the current surge of multidrug-resistant tuberculosis in Mumbai.
Migrant labourers then return to their rural communities and introduce new strains of mycobacteria to their friends and family. Public roads and transportation systems connect remote hamlets to resources such as clothing, food from the public distribution system, and other daily necessities that improve standard of living, while at the same time making distant resources such as healthcare available if people choose to access it.
Finally, education offers families generational hope. New knowledge and skills mean new opportunities, and even the mere prospect of prosperity could encourage parents to invest more in keeping their kids alive. Quite simply, give people a reason to live and they will.
We ignored these factors when discussing Satnami’s case because larger structural change feels out of our control. Biomedically, tuberculosis is an adept warrior with its thick, waxy, shield-like wall. It remains latent in times of uncertainty, attacks when the host’s defenses are down, and picks up resistance to render counterattacks spineless. However, this adeptness may be its biggest distraction technique. While we have been busy with the latest drugs, diagnostics, and vaccines, tuberculosis has exploited the most potent social forces like poverty, inequity, and malnutrition to target the most disadvantaged. Maybe tuberculosis knows something about poverty that policymakers do not.
India has ambitiously announced its plan to end tuberculosis by 2025. The National Strategic Plan involves a multi-pronged approach that includes prevention, early case detection, aggressive treatment, and strengthening of health systems, with an intentional emphasis on disproportionately affected populations. Despite the broadness of the approach, the plan is still too focused on the disease itself and fails to address standards of living. Nutritional support is being offered to patients diagnosed with tuberculosis, but addressing malnutrition in the general population may actually have a greater effect on the epidemic, especially considering India’s recent ranking as 102nd in the global hunger index. Likewise, addressing poverty on a large scale will do more for tuberculosis reduction than providing financial support to the patients. Populations at increased risk, such as slum dwellers and migrant workers, are targeted under the plan, but the rising unemployment and lack of economic opportunity that keeps people trapped in poverty or forces people to seek distant unstable employment are not addressed.
The health systems strengthening arm of the National Strategic Plan also targets tuberculosis specifically: increasing staffing for surveillance, reinforcing the supply chain for drugs, and increasing the quality and funding of tuberculosis care services. Surely, these improvements will help in the fight against the epidemic, but they ignore medical co-morbidities such as HIV and diabetes that are prevalent in tuberculosis patients. Instead of building vertical programs to address each of these diseases individually, we propose that bolstering health systems horizontally would make a larger contribution to reducing the burden. If we had invested in making primary health centres functional, not only would Satnami have received care a full year earlier, but the health system would be better equipped to tackle a host of other medical problems that compound the severity of tuberculosis.
That is not to say that no progress has been made. Schemes such as the “Health and Wellness Center” component of Ayushman Bharat for strengthening primary care services, Swachh Bharat Mission for sanitation, and Pradhan Mantri Jan Awas Yojana for housing, are welcome. However, we anticipate a larger budget and deeper moral commitment to public goods and social welfare programs will be needed to tackle tubercuosis effectively.
We see dozens of patients like Satnami every year at Jan Swasthya Sahyog. On their death certificates, we write tuberculosis as the cause of death, but they die of much more. They die of poverty, of starvation, of hopelessness in an unequal society. Their tuberculosis is a manifestation of such injustice and cannot be compartmentalised out of this context. Accordingly, the strategy to eradicate tuberculosis must also not be compartmentalised. We must address the inequity that plagues the general population at large. The structural change needed is daunting and may even seem impossible, but that does not mean we should not try. Especially when, to those of us working with the most vulnerable populations, it is evident that nothing less is acceptable.