Tuberculosis is a ‘curable infectious disease linked to inequities, it is therefore crucial to invest in partnerships that address these disparities with empathy
A year ago 20-year-old Tahira was convinced she was going to die. A fever that refused to go accompanied by a persistent cough, a loss in appetite and extreme weakness had confined her to the bed for months. Her husband, a rickshaw puller, had neither the means nor the time to take her to a doctor. It was only when her brother came to visit her in Kolkata and saw her failing health that he decided to take matters into his own hands. He brought Tahira back with him to her natal house in Seemapuri, Delhi.
This decision was to save her life.Around this time, Humana People to People India (HPPI), a not-for-profit, was reaching out with information and guidance on tuberculosis (TB) as a part of their Project LEAD (Leveraging Educating, Advocating to Disrupt TB transmission). Working in close coordination with the government’s National TB Elimination Programme (NTEP), LEAD focussed on the oft-ignored and overlooked marginalized communities living in low-grade urban slums, the homeless and migratory population in four cities, Delhi, Mumbai, Howrah and Hyderabad. Persistence PaysWhen LEAD field officer Shanti met Tahira, she immediately knew what had to be done. First, she was taken for a chest X-ray.
When it showed Tahira presumptive for TB, sputum microscopy was conducted which confirmed TB. Once this became clear, the diagnosis was reconfirmed through the WHO-recommended molecular test via the Cartridge-Based Nucleic Acid Amplification Test (CBNAAT) and drug susceptibility test via Line Probe Assay (LPA) provided free at the government GTB Hospital. The drug susceptibility test is done to ensure that the TB bacteria (Bacillus Mycobacterium Tuberculosis), that infects a person is not resistant to the medicines they are treated with.
Realising there was no time to waste, Shanti quickly enabled her registration on Ni-Akshay, the government’s NTEP real-time patient management web system, so that her card could be made and her treatment started the same day. As a trained worker, Shanti knew time was of the essence and treatment adherence critical. So, for the next six months, Shanti would become Tahira’s shadow. She kept a watchful eye and followed up doggedly with 40 visits to ensure Tahira didn’t miss out or falter in sticking to the drug regimen.
Her persistence paid off when Tahira tested negative a couple of months ago and is now completely cured.The Techno CATTB being an infectious disease, early detection and treatment is vital especially as it spreads when persons with the illness expel the bacteria into the air, mostly by coughing. Here is where technology can play a role. Cough Against TB (CAT) an innovative application AI-powered cough-sound-based screening tool to assess the likelihood of pulmonary TB developed by Wadhwani AI, resulted in a 10.8% presumptive rate and a positivity yield of 15.6%.
One of the important outcomes of using CAT was its detection of asymptomatic cases, which otherwise would have been missed. While technology has been an enabling tool, the real success of screening over 600,000 individuals, identifying 3,182 people with TB (PwTB), and supporting 98% of them in Delhi with treatment adherence has been due to the commitment and compassion shown by the women field workers. The project findings at the end of the one-year project indicate that the female field officers proved to be more effective than their male counterparts in TB awareness and screening because of their empathy.
A Human TouchHow a human touch can make all the difference was seen in Tahira’s case. Shanti’s support to Tahira during her challenging treatment journey was not just by counselling but also through food ration supplements every month through her contacts with an NGO. Additionally, she also linked her to NTEP’s Ni-Akshay Poshan Yojana, the government scheme to provide Rs 500 per month for PwTB to buy food. Deploying women now cured of TB as activists and field workers have also worked wonders to reach out to those who fall through the cracks. They know what it means to live with TB and the societal stigma that have to face. Their determination to help others in similar situations has boosted early detection and treatment. It is a known fact that those most at risk are people residing in poorly ventilated and overcrowded conditions, suffering from malnutrition and diseases and with limited access to healthcare. Project LEAD has shown that women field officers are more successful in persuading TB screening and treatment adherence among the vulnerable and marginalized because of their understanding and sensitivity. TB researchers Dr Anurag Bhargava, Dr Madhukar Pai and Dr Madhvi Bhargava reiterate that TB is a “curable” infectious disease linked to inequities’, it is even more imperative to invest in more partnerships that bridge these inequalities with empathy.
(The author is a journalist writing on development and gender. The views are expressed are personal)