One step towards making the world free of TB

Shobha Shukla / Bobby Ramakant *

Let us share an old story you might have read it already. But guiding lights always guide. This is one of them for us: "Once upon a time, there was an old woman who used to go to the ocean to do her writing. She had a habit of walking on the beach every morning before she began her work. Early one morning, she was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see.

Off in the distance, she noticed a small girl approaching. As the girl walked, she paused ever so often and as she grew closer, the woman could see that the girl was occasionally bending down to pick up an object and throw it into the sea. The woman called out, "Good morning! May I ask what it is that you are doing?"

The girl paused, looked up, and replied “Throwing starfish into the ocean. When the sun gets high, they will die, unless I throw them back into the water.” The woman replied, “But there must be tens of thousands of starfish on this beach. I am afraid you would not really be able to make much of a difference." The girl bent down, picked up yet another starfish and threw it as far as she could into the ocean. Then she turned, smiled and said, “It made a difference to that one!”

A homeless person would not have got TB services without the support of a community health worker, so do we believe. Akin to starfish analogy of "one step towards changing the world," Humana People to People India workers strive their hardest to bring yet another person to TB care fold - and support her/him on their way to cure.

Rajendra, who hails from Uttar Pradesh state of India, had migrated to West Bengal and then came to Delhi owing to his alcoholism (as he himself stated). More than a year before getting diagnosed of TB in Delhi, he was presumptive of TB when he underwent pleural aspiration in West Bengal. But no one offered him a TB test back then. He came to Delhi, became very sick and weak while staying in a night shelter for homeless people - so much so that he could not even walk a step or stand on his feet.

The turnaround came when he was spotted by Abhishek, a frontline community health worker who works as a Field Officer of Humana People to People India and regularly visited this shelter. Abhishek immediately put him on a cycle rickshaw (even that was not easy given Rajendra's condition) and took him to a nearby hospital - Delhi’s famous and among India’s best TB clinics at Lok Nayak Jai Prakash Hospital (also known as LNJP or ‘Urban’ among the locals) which was just about a kilometre away.

Rajendra tested positive for TB. He received treatment on the same day he got a report of being positive for TB. After a lot of critical support from community health workers, as well as from the caretaker of the night shelter, he could complete his treatment on 13th February 2024.

Quitting alcohol was the first hurdle if he was to defeat TB

Another game-changing counselling which Abhishek gave him was on quitting alcohol. Though this was an uphill battle for Rajendra, he was finally able to become a teetotaller and defeat TB. His source of nutrition was from the free food which is regularly provided to the night shelter residents by an NGO (Akshayapatra).

The transformation from TB survivor to TB champion

Rajendra is not only a TB survivor but also champions the fight against TB by bringing other people who have similar symptoms into TB care fold. So far (by early April 2024) he has helped six people get referred to TB services, out of which three are seeking help from Abhishek for TB disease management.

The night shelter where Rajendra lives is about a kilometre away from LNJP hospital (and 750 metres away from Girdhari Lal Hospital from where he took his medicines) in the very heart of India’s capital Delhi.

But even this distance seems too far to travel, for a person in Rajendra’s condition. His personal lived experience of fighting and winning over TB underpins how critically important is the role of community health workers to bridge this gap between existing TB services and their access to most-at-risk people. Community health workers play a vital role in bringing key and vulnerable populations into TB care fold. It is important to remember that if are to end TB then we cannot leave anyone behind as TB anywhere is TB everywhere.

TB diagnosis takes an hour, but diagnostic delay was over a year

Rajendra had undergone a pleural aspiration over a year back in West Bengal where the healthcare worker had asked him to get checked for TB. But he was in denial, did not get tested, and came to Delhi. “When I got drunk, I stopped feeling if I was even sick or had a fever - until the day when I just collapsed,” said Rajendra to CNS.

Can you last on a bread bun for 3-4 days?

Description automatically generatedHis persistent cough worsened, he became very weak to do any work, and was even unable to stand or walk a step. He had gradually lost his appetite to the extent that a bread bun lasted 3-4 days as the only source of food for him. He was lying on a side in the night shelter when Abhishek spotted him and enquired about his health.

It was Abhishek who consoled him and took him to the nearest TB centre at LNJP Hospital. His x-ray was done followed by an upfront molecular test using Cartridge-Based Nuclear Acid Amplification Test (CB-NAAT) on the same day. His TB drug susceptibility test via Line Probe Assay (LPA) was also done to ensure that the TB bacteria that infect a person are not resistant to the medicines he or she is treated with. His HIV test was negative.

Rajendra was counselled extensively and taken for a medical consultation before he got the report. He was counselled on the importance of taking TB medicines regularly, infection control, nutritional support, treatment adherence, taking responsibility of one’s own health, and seeking support from the community health worker or other healthcare providers as needed.

His treatment for drug-susceptible TB of the lungs began on the same day he got his TB positive test report. Thanks to Abhishek for making this happen, as it is so very important to put all people diagnosed on effective treatment as early as possible. It helps reduce human suffering as well as stop any further spread of TB infection – both are critical to ending TB eventually. He got his medicines from the nearest designated microscopy centre (DMC) at Girdhari Lal Hospital. Abhishek helped him get his medicines regularly till he was fit enough to go and collect them by himself.

The fight against alcoholism

Once his treatment was initiated, Abhishek regularly counselled him to stop drinking alcohol. Rajendra recollects how despite initial problems he was finally able to quit and stay quit.

“Despite Abhishek bhaiya’s (bhaiya is a Hindi word for brother or used to address someone respectfully) efforts to help me stay away from alcohol, it was not easy for me to stay away from alcohol. One early afternoon I had a strong urge to get drunk. I went to the alcohol shop as I had enough money in my pocket.

I saw a queue outside the shop. As I sat and waited on the side, I began having second thoughts about alcohol. Finally I gathered enough courage to walk away from the shop and go to the nearby Kamla Market where I had a good meal and came back to the night shelter and slept. When I woke up in the evening and again had a huge urge to drink, I ate and went back to sleep. This difficult struggle against alcoholism continued for 3-4 days. But I persisted. And finally got rid of it.”

Rajendra had a few x-rays during his TB treatment – all free - thanks to LNJP Hospital. One of these x-rays was done in a private clinic and fees covered by Humana People to People India. Initially he faced side effects, like itching, associated with TB treatment, but they subsided soon after.

Rajendra says that even after having completed his TB treatment his energy level is not fully back. “When I go to Girdhari Lal Hospital, which is just 750 metres away, I have to sit down twice to rest and get back my breath,” said Rajendra. He showed his recent ultrasound report to Abhishek which mentions pleural effusion. They agreed to go for another medical consultation with an expert the day after CNS met them. A medical van (supported by Medanta Hospital) with free state-of-the-art laboratory services was also supposed to come the day after we met Rajendra – right across the street in RamLila Maidan.

Gratitude

Rajendra now is helping many more to seek TB services with Abhishek’s support. He expresses his gratitude to community health workers like Abhishek: “I am very indebted to Abhishek Bhaiya – he saved me. If he had not met me, I would have gone away” (he points towards the skies – perhaps implying towards an ultimate resting place after death). “That is the final destination for everyone, is not it?” he remarked pensively.

Community health workers are frontline heroines and heroes

The role of community health worker becomes very important when it comes to making TB services accessible for most-at-risk people. Rajendra and Abhishek’s journey that led to Rajendra’s victory over TB and alcoholism is a clarion call to recognise the role of frontline community health workers and scale interventions to make TB services accessible in people-centred and rights-based ways for everyone – especially those who are most-at-risk. After all, we have to listen to the people we serve.

Now, thankfully the likes of Abhishek are engaged in the daunting task of finding TB in the unreached populations, referred to as the key and vulnerable populations - such as, homeless, migrants, slum dwellers, daily wage earners- and connecting them with the healthcare system. As per the India TB Report 2024, key and vulnerable populations are those with heightened exposure to TB bacilli, constrained access to health services on account of socio-economic determinants of health, or an elevated risk of TB due to compromised immune functions.

Abhishek’s work at Humana People to People India is part of LEAD (Leveraging, Engaging and Advocating to Disrupt TB Transmission) project, supported by United States Agency for International Development (USAID) and JSI, in close coordination with Indian government’s National TB Elimination Programme (NTEP).

Thanks to Humana People to People India and team of Abhishek and everyone engaged, for making a difference for Rajendra. One more step towards making the world free of TB.