Like many others, Surendra’s journey to Delhi was driven by the promise of a better life. But instead of opportunity, he found a life of struggle. For some years, he tried his hands as a cycle rickshaw puller, worked in a school, and eventually settled as a ragpicker, scraping by to make ends meet. Life’s hardships, burdened with alcoholism and smoking, soon took a toll on his body. Fatigue, weakness, and relentless cough led to whispers of tuberculosis (TB) among his neighbours, who threatened to abandon him to his fate.
It was just like any other day when Surendra was lying limp on one side of the slum lane, when Priyanka, a frontline community health worker from Humana People to People India, discovered him. She was on her round of mapping the area for active TB case finding. She saw Surendra’s condition. He was unable to even stand up because of his cough, fever, and extreme weakness. Priyanka, experienced in dealing with TB cases, immediately recognised the signs. Within hours, his sputum was collected, and the diagnosis confirmed TB. However, this was the start of his road to recovery.
I was an alcoholic and a bidi smoker. Continuous drinking took a toll on my health, which started deteriorating. I lost my appetite and became very weak, so much so that I could not lift even a glass of water. I lost weight and there was no strength left in my body. I would cough day and night and have a fever. My whole body would ache, and walking even a few steps became difficult without support. I had become a bundle of bones. My neighbours said that I had TB. They even threatened to throw me out of the slum. But there was no one to support me getting treated. My wife is physically disabled and is unable to walk properly. I had no strength left in me to go to a clinic on my own. I suffered like this helplessly for over one year,”
Surendra said in early April 2024
Sadly, this is the case for many undiagnosed TB patients in India, who live miserable lives and succumb to the disease without being detected. India bears the burden of an estimated 2.6 million people who are contracting tuberculosis (TB) and approximately 4,00,000 people are dying from the disease every year. TB among the marginalised people in the urban megacities is a major challenge. High mobility, alcoholism, smoking, stigma, and comorbid conditions such as malnutrition and chronic lung ailments heighten the vulnerability of marginalised populations to tuberculosis (TB).
Project LEAD: Facilitating TB services to Urban Marginalised
To facilitate TB services for the urban marginalised, Humana People to People India has recently implemented Project LEAD (Leveraging, Engaging, Advocating for Disruption of TB transmission) in 4 metropolitan cities of India, namely Delhi, Hyderabad, Howrah, and Peri-urban Mumbai. Project LEAD has targeted 1,50,000 urban marginalised people each in 4 cities for TB screening. The project contributes to India’s ambitious goal of disrupting TB by 2025, by accelerating efforts to reduce the disease’s impact on livelihoods. The project is a year-long initiative dedicated to creating an effective TB care model. It engages with critical service providers like health, urban development, welfare schemes, CSO partners, community members, and stakeholders and advocates for de-stigmatisation, protection of human rights, and gender balance in marginalised population, to ensure equity in their TB services.
A prevailing stigma surrounds TB in society, influenced by institutional and community norms as well as interpersonal attitudes. This stigma is evident throughout the TB care continuum, affecting delayed care-seeking behaviour, delayed diagnosis, and poor adherence to anti-tuberculosis treatment. With strategic intervention, LEAD can overcome the existing challenges and reach the committed targets. The project showcased rapid enhancement of screening, case detection, treatment adherence, and successful treatment with the decline in Lost-to-Follow-up and mortality among marginalised populations. It has been successful in establishing an effective patient-support system through a partnership and promoted gender-responsive, right-based TB services for the marginalised population. Innovative interventions were successfully demonstrated to further improve case detection. Introduction of Artificial Intelligence (AI)-aided cough-sound based screening, and mass-scale Chest X-ray screening showed promising results.
The Project contributes to India’s goal of ending TB and is making a difference by actively contributing to TB prevention, awareness, and treatment efforts.