In January 2021, SA, the middle of three siblings, a bright adolescent in the slums of Howrah, aspired to clear her class 12 exams soon, and start earning for the family. Her father was a headloader and her mother, a daily wage worker. When SA fell sick with fever, vomiting and headaches, she was shunted from pillar to post, treated for typhoid for six months until she landed in a tuberculosis hospital where she was diagnosed with TB of the brain. By now she had lost her speech, cognisance and limb function. Her permanent disability left her family devastated.
In March 2022, a young schoolboy of the Pahadiya tribe in Jharkhand, who was partially treated for TB of the neck lymph nodes, and is now forced to remain at home because of active TB of the spine. In another case in rural Chhattisgarh, a woman of child-bearing age had received antibiotics for a whole year until she was diagnosed with extensive genitourinary TB. However by then she had been abandoned by her partner and was left with an irreparable condition of her uterus.
These are uncommonly heard common stories.
Lung or pulmonary TB, a serious condition, receives greater attention than other forms of TB perhaps because it is comparatively common and easier to detect. Also due to its contagious nature, it is hunted down, as controlling one case could mean saving many from contracting it. However manifestations of TB are protean, and the seriousness and prevalence of some forms of TB, which are loosely conflated into one term, EPTB or Extra Pulmonary Tuberculosis, cannot be overlooked.
The bacteria and the illness
The bacteria, Mycobacterium tuberculosis (Mtb) is the main causative agent of tuberculosis, an illness contracted via the airborne route. After entering the lungs, it can stay dormant, become symptomatic, or may spread via the bloodstream to infect other parts of the body. Mtb can affect most organs from head to toe and from skin to bone. There is TB of the brain, of the linings of the central nervous system (CNS), lungs, heart, abdomen, of the lymph nodes, eyes, the larynx, intestines, kidneys, spleen, genital organs, joints, bone and also of the skin.
Depending on the extent and the organ involved, the consequence can be as grave as permanent disfigurement, vision loss, paralysis, infertility and even death. Also, rehabilitation support in TB is severely lacking. This is in addition to the high out-of-pocket expenditure in shopping for care, indirect contribution towards antimicrobial resistance as patients may receive irrelevant antibiotics for weeks to months from unskilled practitioners and the burden of mental stress from all this. Yogesh Jain a pediatrician and public health physician who has been practicing for nearly 3 decades says that having one person in a household with CNS TB is worse than having 3 with pulmonary TB.
Non-lung TB cases are the tip of an iceberg
India, a country with the highest global TB burden, has an ambitious plan to achieve the World Health Organization’s TB elimination goal ahead of time, by 2025 instead of 2030. A recent article shows that India’s trajectory is way off this mark. The prevalence of non-lung TB presentations is the tip of the iceberg. In 2022, the Nikshay portal of the Government of India reported these cases as 24% of the 2.4 million TB cases. However considering the low visibility and diagnostics pitfalls when it comes to these cases, it would be safe to assume a larger number. A study in Kerala in 2020 reported numbers close to 50% in pediatric age group. Concomitant diabetes, HIV and undernutrition worsens the scenario.
The obscurity when it comes to the whole of picture of TB in India can be attributed to many reasons. Symptoms of TB are diverse, and so are the samples and methods of testing. This is compounded with a lack of public awareness that stems from poor outreach of the health sector. Care seeking is thus haphazard and may even be hazardous. Our unregulated health system has many players who can dispense drugs unchecked and unaudited.
For Deepak Badhani, a surgeon at a 100-bed rural healthcare organisation in Chhattisgarh, a week can have three cases of spine TB, extensive skin TB, a child with lymph node TB and an abdominal TB case. His work on 263 patients over 18 months reveals that to reach a proper diagnosis and access treatment, patients spent anywhere from a month to five years.
Diagnosing all forms of TB
In a country where the burden of TB is so staggering, a high index of suspicion is needed to pick up cases of TB affecting other organs. With an increase in virtual platforms of learning and a lack of skilled practitioners in marginalised areas where one tends to see more TB, the chances of missing a diagnosis are high. Amruth Jacob used to be a family practitioner in a TB hotspot area in rural Rajasthan until very recently. He says that in his three years of practice, no one in the local government sector or private sector in that area treated his many patients of TB lymphadenitis or TB of the pleura, most likely due to lack of diagnostic skills. He himself would collect biopsy samples and sent them to Udaipur, about 70 km away to hear back from the lab after a week.
At the community level too, TB elimination strategies are only geared towards detecting pulmonary TB. A block supervisor and trainer of 300 Mitanins in Chhattisgarh, an ASHA worker in Odisha, a Sahiya in Jharkhand, an ASHA worker in Bihar, an ASHA worker in Mumbai slums — all of community healthcare workers said that the four characteristics of TB they are taught to look for are: a cough for more than 2 weeks, fever and loss of appetite and weight. They were unsure of the various forms of TB, their symptoms or their diagnostic means. They are instructed to give a sputum cup or send the suspected patient to a government facility for lung TB testing
While there are government guidelines on EPTB, they are fraught with gaps in providing practical recommendations. There is mention of the expansion of molecular diagnostic services but not of culture facilities, biopsies, ultrasounds, CT scans or other diagnostic facilities, all of which are important in the diagnosis of other critical forms of TB and other illnesses.
The modern rapid molecular diagnostic test for TB, CBNAAT, still faces problems of reach, of adequate human resources to operate it, of electric supply, of cost and of turnaround time. More importantly, this widely-spoken-about test is not very sensitive in detecting the bacteria in non-sputum samples. Diagnostics should not be considered formidable in complexity, in human resource needs or expenses and all necessary means should be brought closer to the community.
Multi-disciplinary approach
Tuberculosis is a reflection of the extent of marginalisation, of hunger in quality and quantity of food, of poor living conditions and most of all of the broken and discriminatory public care system in the country.
There is an urgent need to consider the involvement of professionals beyond pulmonologists in combating it. However, first and foremost, a multidisciplinary approach with a humane, person-centered care approach vs a number-driven, fragmented, organ-centered care approach should feature prominently in strategies for TB elimination and for general well being.
A 100-day aggressive campaign has been announced for 347 districts across the country much like a terrorist combing operation. With the questionable BCG vaccine drive, announcements to deploy mobile X-ray units and increase molecular diagnostic tests for sputum, the emphasis seems to lean towards pulmonary tuberculosis. Can we expect India to really be ‘TB Mukt’ if this is the outlook? The goal will be left incomplete and unethical if victory is celebrated prematurely upon reduction of pulmonary TB alone.
(Vasundhara Rangaswamy is a rural public health and primary care physician and a laboratory professional. vasusemailid@gmail.com)
Published – December 09, 2024 05:28 pm IST
