Ravi Bhumiya was seven when his grandmother passed away, apparently of a mysterious illness. Not long after, he developed a swelling in his neck. Despite several visits to the local friendly jhola-chaap (informal medical practitioner) – and other, less accessible doctors, the neck swellings grew and reached his back, then began to ooze pus. Today, Ravi is a 12-year-old boy with active spinal tuberculosis, which affects his ability to walk.
Living in Noonpada, a village nestled in the hilly, forested region of Jharkhand’s Amrapara district with his parents, the form of TB he has resulted in draining abscesses on his back. The foul-smelling discharge from these abscesses has led to social isolation, as the other children in the village avoid him. He finds it difficult to walk or run, preventing him from going to school or playing with his friends and five younger siblings. His disability eventually caused him to stop attending school.
Ravi isn’t alone in his hardships. India shoulders the world’s heaviest burden of TB, with over 2.7 million new cases and 4,40,000 deaths annually. Every 11 seconds, someone in India is diagnosed with TB, yet many people remain untreated due to delayed diagnoses, limited healthcare access, and systemic challenges.
Why does TB persist in India?
The development of TB in exposed individuals involves two stages. The initial infection is subdued by most people’s immune systems. Active TB develops in about 5% of exposed people within two years. The remaining cases often arise years later due to the reactivation of the TB bacteria if and when someone’s immunity drops.
Several factors increase this disease’s risk of infection and progression, including poor nutrition, overcrowded living conditions, and environmental hazards like air pollution. Social determinants such as poverty, stigma, and lack of awareness exacerbate the problem.
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In Ravi’s family, generations of inadequate nutrition have resulted in frail body structures, reflecting their long-standing struggle with food insecurity. With a monthly income of only Rs 3,000, accessing quality healthcare remains challenging. In Ravi’s case, severe malnutrition – a key driver of TB in India – combined with barriers to healthcare left him highly vulnerable to infection and significantly hindered his recovery.
Out of coverage: Ravi’s uphill journey
Over a year and a half, Vasundhara, a physician working with a community health initiative run by an NGO, made three trips to Ravi’s home to speak with his parents and assess his condition.
His parents, weary after visiting dozens of doctors, were initially reluctant to discuss Ravi’s situation. After several more visits and trust-building, they agreed to take the child for further investigation.
One of Vasundhara’s first challenges was obtaining an X-ray for Ravi, which is crucial for an accurate diagnosis. The nearest hospital providing reliable care was 100 kms away, with no non-emergency ambulance service. Ravi’s parents couldn’t afford transportation costs, and losing a day’s worth of wages to take the day off for another visit to the doctor would take food off of all eight plates at home.
Ravi also lacked the all-important Ayushman Bharat card, which would allow him subsidised treatment. Acquiring this card requires several other documents – an Aadhaar card, address proof, ration card, and a mobile number – which the family does not possess.
Many efforts have been made to secure the necessary documents with the help of the local program coordinator and community health worker. However, each visit to the relevant facilities incurs transportation costs and lost wages, a significant burden for the family. Navigating the bureaucratic process in unfamiliar surroundings is intimidating for them. Though the family shares one mobile phone, the network does not reach their home.
During my visit with Vasundhara on her third trip, Ravi’s parents were still skeptical but willing to discuss potential options.
Poor nutrition is a significant contributing factor to developing tuberculosis, and Ravi’s case is no exception. He was severely underweight, weighing only 17 kgs during the first visit – the average weight for a four-year-old. Despite ongoing counseling about nutrition and efforts to facilitate support, including nutritional aid from the local Anganwadi and eggs provided by an NGO, his nutrition had not improved.
Six months after Vasundhara’s last visit, Ravi’s weight had dropped by another kilogram, highlighting the persistent challenges of malnutrition and illness in his recovery.
Ravi needs an MRI of his spine to determine the extent of the infection and to decide the appropriate course of action. This imaging will help ascertain the kind of surgery required, in addition to the anti-tuberculosis medical treatment he needs. He will likely require three months of inpatient treatment, which would require at least one of his parents to stay with him in a hospital in an unfamiliar city for the entire duration.
Given the multiple experiences of dismissal and rejection they have faced within the health system, Ravi’s parents remain wary of treatment, especially since doctors cannot guarantee a complete recovery.
While another NGO has agreed to perform his surgery at a reduced cost, and one in a different state has stepped in to provide drugs during regional shortages, systemic gaps persist. The local district hospital TB officer has tried his best to help, but his hands are tied by the ongoing scarcity of drugs, diagnostic tools, and specialised care facilities.
Leaving no one behind
Ravi’s story is just one among millions. During a field visit last July to Bihar and Jharkhand, we discovered at least one untreated, poorly treated, incompletely treated, or wrongly treated TB case in each community meeting, each with its list of unaddressed systemic failures.
It has become clear that providing rational and evidence-based medical treatment is just a tiny part of the solution. Even as the national programme for TB elimination evolves, it must integrate the practical, logistical, and emotional roadblocks that impede access to effective treatment.
Any medical intervention will remain ineffective without addressing the determinants of health and the challenges surrounding access to healthcare and nutrition.
The national programme for eliminating TB (NTEP) provides monetary help for nutrition in TB patients under Nikshay Poshan Yojana. The programme has recently doubled the monthly financial support and promised additional food supplementation to low-weight patients.
While this should help Ravi and thousands of others get the treatment they deserve, the hurdle of adequate documentation still stands resolutely in their way. Though our health programmes continue to innovate, they often forget the last of the line – the ones who are the most vulnerable and yet the least likely to find help.
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While NGOs and good samaritans sometimes manage to help along the way, Ravi needs more. He requires social support that ensures his parents don’t have to choose between his treatment and their livelihoods. This would involve groundwork by invested community health workers, field coordinators, programme facilitators, and programme coordinators.
Establishing referral pathways and ensuring transport for patients with limited means can gradually eliminate fruitless out-of-pocket expenditure that families like Ravi’s have faced. Inpatient treatment could also be made easier by assigning caseworkers to hard-to-treat and hard-to-reach patients.
Even as the treatment of his infection is prioritised, it must be remembered that this doesn’t occur in a vacuum. Poor nutrition and lack of diagnostic access may have initiated his illness, but making documentation compulsory keeps Ravi away from the services he is rightfully entitled to.
The national programme aims for TB elimination this year, and I hope Ravi, too, finds his path to recovery. While his family’s decision makes treatment uncertain, I remain hopeful that with time and the proper support, every child like Ravi will have a chance at a TB-free future.
This article first appeared on Nivarana. Read the original piece here.
