Tuberculosis beyond the numbers

It was truly heartening to see yesterday’s The Hindu newspaper feature an article authored by Dr. Sowmya Swaminthan, former WHO Chief Scientist, and Mr. Chapal Mehra, Convener of Survivors Against TB. The article, titled ‘TB Control in India calls for person-centered solutions’ adeptly addresses the underlying factors contributing to TB. While my expertise in TB is limited, my journey has been enriched by patient interactions, which have significantly contributed to my understanding of this complex disease. I believe sharing these experiences is crucial, echoing the sentiment expressed in the article.

As India grapples with the complexities of controlling TB we need a paradigm shift urgently – one that places those affected and their lived experiences at the centre of tackling this ancient disease.

– The Hindu Editorial (March 25,2024)

On a global scale, in 2022, Tuberculosis claimed the lives of an estimated 1.3 million individuals, predominantly in low- and middle-income countries (LMICs). Simultaneously, approximately 10.6 million people worldwide were diagnosed with TB during the same period. To put this into perspective, the total number of TB cases is comparable to the entire population of Portugal. However, does tuberculosis boil down solely to numerical statistics?

As mentioned earlier, besides the inherent complexity of the disease itself, the societal context surrounding tuberculosis introduces additional layers of intricacy. I would like to share three incidents from my postgraduate days to further shed light on this aspect.

The Significance of Empathy in Communicating a Tuberculosis Diagnosis

During my second year of postgraduation, I encountered a timid teenage girl accompanied by her mother in the outpatient department. While her symptoms initially suggested a typical upper respiratory tract infection (URI), her physical appearance raised concerns. Upon further inquiry, the mother mentioned an episode of fever that had subsided with antipyretics, followed by loss of appetite. During a routine general examination, I noticed a solitary, firm node around her cervical collar, indicating a possibility of infection or something even worse such as Malignancy or Tuberculosis.

After consulting with my senior, we proceeded with a lymph node biopsy. A few days later, the biopsy results confirmed caseous necrosis, a characteristic feature of TB. I was elated at my early diagnosis, considering its significance for effective treatment. However, my joy turned to shock when, upon delivering the news to the mother with a smile, she began to sob. It dawned on me that my approach had been insensitive, overshadowing the gravity of the situation with my own pride.

I realized that for the mother, the diagnosis of TB brought forth concerns beyond mere medical treatment. It encompassed the challenges her child would encounter in school, during playtime, etc. The stigma associated with TB made it more than just a medical diagnosis—it affected every aspect of the child’s life. My arrogance had blinded me to these critical considerations, highlighting the importance of sensitivity in conveying such diagnoses.

Will you take care of my goats?

Towards the end of my postgraduation, an incident left a deep impression on me. There was a farmer who stubbornly refused to adhere to his tuberculosis (TB) treatment regimen. Despite completing one month of medication each time, he would abruptly stop, earning him the label of a TB treatment defaulter in the eyes of public health specialists. Such patients are deemed a significant concern as they can contribute to the development of Multi-drug resistant TB, a nightmare scenario for public health experts.

Feeling a sense of personal responsibility, I resolved to confront this challenge with all my professional expertise, adopting a somewhat paternalistic approach. With a serious demeanor, I entered his home and insisted on inspecting his medication. Despite his coughing, which showed a lack of consideration for cough etiquette, he extended his hand in greeting. Choosing to prioritize hand hygiene, I politely declined the handshake and greeted him with a respectful “Vanakkam”. Without wasting much time I opened my conversation. I told him that it is a crime to stop medications and he was even putting his near ones at risk of developing Tuberculosis after which he replied,

“Will you take care of my goats?”

This experience struck a chord with me. Up until now, I had firmly held the belief that Tuberculosis posed a significant threat, primarily due to non-compliance with medication. However, I found myself confronted with a different reality. Each dose of the medication took a toll on the patient, rendering him too fatigued to work in the fields or care for his goats. Consequently, despite diligently taking the drugs, he suffered a loss of income. What became apparent was that his immediate concern lay not in completing his treatment but in maintaining his livelihood. It forced me to reconsider my perspective through this new lens.

A funeral that foiled our efforts

Situated in Vellore, Tamil Nadu, India, the Jawadhi Hills is a hill station nestled within the Eastern Ghats. During my postgraduation, our healthcare services reached out to this remote hamlet, where residents had limited access to primary healthcare. Every week, we used to receive statistical updates from a group of villages, gathered by our healthcare workers. One of these villages reported a surge in tuberculosis cases, prompting us to take action. As part of our intensified case-finding efforts, we decided to test individuals exhibiting TB symptoms. We had to take a nearly three-hour uphill journey to reach the village, only to find it deserted upon arrival. When we arrived at the house of a known TB patient, we found it was locked. Fortunately, a neighboring resident informed us that a death had occurred in a neighbouring village, and almost everyone had left for the same. Despite this setback, we inquired whether she experienced any symptoms of TB. She admitted to experiencing a prolonged cough to our relief and her dismay. However, when we attempted to collect sputum for testing, a very minimal amount was produced, hindering our ability to conduct the CBNAAT test, which is a rapid molecular test for TB diagnosis. Disappointingly, no other cases were found. Reflecting on our approach, I now wonder if establishing communication with village leaders beforehand would have been more productive so that we could have got more people for testing.

As seen above, there are numerous challenges that need to be addressed before we can attain Tuberculosis elimination. Presently, our country is grappling with a shortage of TB drugs due to programmatic issues. It is concerning to observe situations where doctors are forced to prescribe pediatric anti-TB medications for adults in specific regions. Failing to promptly resolve such incidents puts patients who are drug-sensitive at risk of developing drug resistance.

The fundamental aspects of tuberculosis elimination revolve around stigma, community involvement, drug availability, managing adverse effects, and ensuring adequate nutrition. These elements serve as the foundation for addressing tuberculosis effectively. While the government has implemented measures, the critical question is whether these initiatives remain confined to paper or are actively practiced. For example, initiatives like TB Mukth Panchayath aim to promote community engagement, DOTS 99 ensures drug compliance, and Nikshay Poshan Yojana addresses the nutritional requirements of a TB patient. While these policies appear commendable, the true measure of success lies in placing individuals suffering from tuberculosis at the forefront of policy formulation and implementation. Therefore, the essential inquiry to pose is: How are you addressing the needs of those affected by tuberculosis at the grass-root level?