SHOBHA SHUKLA, BOBBY RAMAKANT – CNS
nor his treating doctor(s) thought of TB. And this did not happen in an area with low TB rates but in India’s national capital Delhi – a state with highest TB rates nationwide – and a country which is home to the largest TB burden in the world.
It was only when a frontline community health worker met him, that she thought of TB and he could access TB services, increase his health and treatment literacy, and successfully complete his treatment. One of his daughters too who was found positive for TB (of the lungs and abdomen) in the contact tracing done by the community health worker, is as of now currently on treatment. Both could access a range of social support to help them adhere to the therapy, thanks to the community health worker.
Manjit, who is a native of Bihar state of India, had migrated to Delhi many years back with his parents. He works in a pipe market and lives in New Seemapuri urban slum, East Delhi, in a rented accommodation with his wife and three daughters. The area he lives in, is home to many homeless people and rag pickers and is also a site for garbage processing. This area is about 2-3 kilometers away from Delhi’s famous Guru Teg Bahadur (GTB) Hospital – the only tertiary care government hospital in East Delhi.
Eliminate diagnostic delays
If we are to stop the spread of TB infection it is imperative to diagnose early and accurately, and put each person diagnosed on treatment with medicines that are effective on that person. It is equally vital to ensure that the person is fully supported – in every possible way – to complete the therapy successfully. As per a study done by Dr Susmita Chatterjee et al, average diagnostic delays in those at heightened risk of TB is 12 weeks. We must eliminate these diagnostic delays if we are to end TB.
In July 2023 Manjit started suffering from bouts of cough and fever. He went from one doctor to another, seeking medical help and advice, but neither could his illness get diagnosed nor did he get any relief. On the contrary, his condition kept worsening.
“I was very sick. My body had become very weak. I was unable to walk by myself. There was constant coughing and fever. I consulted many doctors and followed their advice. Many medicines were tried on me. I was even put on typhoid medication for more than 20 days. But with every new treatment, instead of improving, my condition worsened. I suffered like this for more than three months. I had no clue what was happening to me, and perhaps neither did the doctors. I underwent a battery of tests. But no doctor asked me to get my sputum tested [for TB],” said Manjit to CNS (Citizen News Service) in April 2024.
Then luckily, one day a neighbour suggested him to contact Shanti, a community health worker who works as a field officer for Humana People to People India (HPPI). The neighbour told him that Shanti had been regularly going around the community raising awareness on TB and actively reaching out to those who had similar symptoms as Manjit and helping them access healthcare services.
Thanks to Shanti, same day test and treat made possible for one of the most vulnerable
Shanti took Manjit to the nearby private x-ray clinic in Saboli area of East Delhi and with support from HPPI a free x-ray was done, which showed Manjit as presumptive for TB. Then, they went to Red Cross healthcare centre where sputum microscopy confirmed TB. His Ni-kshay ID was made, and he was put on treatment on the same day (Ni-kshay is a web-enabled real-time patient management system of government’s National TB Elimination Programme).
After this, they went to GTB Hospital for a free WHO recommended molecular test via CBNAAT (Cartridge-Based Nucleic Acid Amplification Test) and drug susceptibility test via Line Probe Assay (LPA). Drug susceptibility test is done to ensure that the TB bacteria that infects a person is not resistant to the medicines he or she is treated with.
Same day test and treat is important when it comes to TB – the deadliest of all infectious diseases – so that the person can become non-infectious soon after beginning the therapy and also reduce spread of TB, as well as lessen human suffering.
Counselling of Manjit was important. Shanti did daily follow-up of father and daughter during their entire course of treatment. Both received health education, treatment literacy, importance of treatment adherence, nutrition, infection control (like wearing of mask) and other support to tide through their treatment journey. For instance, Manjit wore a mask regularly, thanks to Shanti. Shanti also ensured that both got food ration supplements every month, courtesy an NGO operating in New Seemapuri dispensary.
As there is always a likelihood of TB infection in the lungs to spread to others, Shanti went with Manjit to his home and counselled his wife to get herself and their three daughters screened for TB. His wife was initially reluctant to go for a TB test as none of them had any TB symptoms. But upon Shanti’s insistence she got convinced to take a free TB test. All tested negative except for one of the daughters who was found positive for TB of the lungs.
When she was taken to GTB Hospital for CBNAAT molecular test and LPA drug susceptibility test, her condition became so serious that she had to be admitted in the hospital for over two weeks. A CT scan later confirmed that she had abdominal TB too (in addition to TB of the lungs). Her treatment had also begun on the same day that she got diagnosed with TB.
It was only through Shanti’s untiring efforts, that Manjit and his 10-year-old daughter could get diagnosed with TB and receive treatment, care, and support all through their therapy.
Both got their medicines from the nearest dispensary in New Seemapuri.
“I defeated TB” says Manjit
Manjit successfully completed his 6 months long TB treatment on 1st of April 2024, and has tested TB free. “I defeated TB,” he said. His daughter is on the path of recovery and her treatment is hopefully about to complete later this month – subject to her test reports.
Shanti has been a pillar of support to Manjit during his entire treatment regimen. “Shanti didi (didi is a Hindi word for sister) helped me access all the available medical facilities, like diagnosis and timely treatment, and helped me get food ration supplements. I too followed the doctor’s instructions as I was determined to defeat this enemy called TB. I religiously ate my medicines (3 pills a day) on time. I had no prior knowledge about this disease when it struck me. But thanks to Shanti didi and thanks to my doctors, I have learned a lot about TB and have also become treatment literate” said Manjit.
Unlike many other TB patients, Manjit was fortunate enough to not have faced any stigma or discrimination from his friends, co-workers, or his employer. He received their support and solidarity all through his treatment.
Community health workers are critical link between vulnerable people and TB services
Shanti helped Manjit and his daughter to access social support provided by the government of India as well as by other NGOs. For instance, she helped them complete the formalities so that each of them could get direct benefit transfer under Indian government’s Ni-kshay Poshan Yojna and receive INR 500 every month during their treatment in their bank accounts.
She gave them moral support to bear with the side effects of TB medication. They too responded in a very positive manner and did not miss any dose of medicine.
The likes of Shanti 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 function.
Shanti’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 Research & Training Institute, Inc. (JSI), in close coordination with Indian government’s National TB Elimination Programme (NTEP).
“I work for an NGO. But this is not just a job for me. It gives me a lot of happiness and satisfaction for being able to do something for our fellow human beings who may be living in dehumanising conditions. Manjit was finding it difficult to walk when I had first met him and now, he can comfortably walk and go around his daily livelihood and support his family. This gives me a lot of strength to keep doing what we do. This is the driving force why we try our best to make the area we are allotted to work in, becomes TB free,” said Shanti.
Manjit’s mantra is Never Say Die. “One must have self confidence that he/ she/ they can fight TB (or for that matter any other disease). If I had become nervous and dejected and lost confidence about getting cured, it would have become difficult. I gave the disease a good fight – ate my medicines on time and kept my morale and confidence high – that I will get cured. And I won the battle. I defeated TB,” said Manjit.
Manjit is not only a TB survivor but also a TB champion who proactively goes to health awareness camps to encourage those with symptoms to get screened for TB, and those with TB disease to stay strong, seek support and finish the therapy.
The indomitable spirit of Manjit and the unstinted support of Shanti bear testimony to the fact that “Yes, we can end TB.”
Shobha Shukla, Bobby Ramakant – CNS (Citizen News Service)
(Shobha Shukla and Bobby Ramakant co-lead the editorial of CNS (Citizen News Service) and on the governing board of Global Antimicrobial Resistance Media Alliance (GAMA) and Asia Pacific Media Alliance for Health and Development (APCAT Media). Follow them on Twitter @shobha1shukla and @bobbyramakant)
– Shared under Creative Commons (CC)
