After suffering debilitating TB symptoms for over a year, a homeless person got lifesaving help from a community health worker. Thanks to her, he was eventually diagnosed with TB of the lungs and put on treatment, quit alcohol, and survived one of the worst Delhi floods during his treatment, and got cured.

A month before the 25th International AIDS Conference (AIDS 2024) opens in Munich, Germany, here is a real-life story from the frontline that makes a clarion call to #PutPeopleFirst.

Surendra migrated to Delhi from Bihar state of India in search of livelihood. For some years he tried his hands as a cycle rickshaw puller, worked in a school, and eventually settled as a ragpicker. He now lives in a temporary dismal slum on the banks of river Yamuna in East Delhi with his partially paraplegic wife and earns whatever he can through ragpicking.

Diagnostic delays in key and vulnerable populations

“I was an alcoholic, and a bidi smoker (bidi is a leaf filled with tobacco). 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 had fever. My whole body would ache, and it became difficult for me to walk even a few steps without support. I had become a bundle of bones. My neighbours said that I had TB and told me to go to Pushta (an elevated road near the river Yamuna) and get treated for TB. They even threatened to throw me out of the slum. But there was no one to support me get treated. My wife is physically incapacitated and is herself 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 to CNS (Citizen News Service) in early April 2024.

The difference which community health workers make

It was just like any other day with Surendra lying limp on a side. Priyanka, a frontline community health worker who works as a Field Officer of Humana People to People India (HPPI), chanced to pass by him. She was on her round of mapping the area for active TB case finding. She saw Surendra’s pitiable condition. He was unable to even stand up because of his cough, fever, and extreme weakness. From her experience in the field, she thought it could be TB.

After counselling, Surendra agreed to take a TB test. She gave him a container (to collect his morning sputum). Next morning, she took him on a cycle rickshaw (as he was unable to walk even that short distance) to the nearby TB clinic which is part of the government-run Shastri Park hospital.

Although WHO recommendation is to offer a molecular test upfront to every person with presumptive TB (as microscopy underperforms in diagnosing TB), Surendra could only get sputum microscopy done, which gave a negative result. But his x-ray indicated presumptive TB. Based upon x-ray and clinical evaluation, the doctor’s advice was to put him on TB treatment immediately.

Surendra’s 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.

As Surendra was too weak to stand, Priyanka queued up in the clinic to collect his medications so that his treatment could start without any further delay.

She then counselled him on how to take his 3 pills every day, importance of treatment adherence, nutritional support, and other health and treatment literacy related issues.

Priyanka also briefed him about the nutritional support offered by the government of India: Ni-kshay Poshan Yojna under which he was able to get INR 500 every month during his TB treatment. She helped him complete all the formalities so that he can receive this benefit.

As there is a likelihood of TB of the lungs to spread to others, Priyanka also counselled his wife to consider taking a TB test, which she did and tested negative.

Surendra’s arduous journey through the treatment pathway

At the onset, he faced severe side effects related to TB medication. He would feel very dizzy after taking his medicines. Upon consulting the doctor, his medication was changed, and side effects subsided eventually.

The next obstacle was his alcohol addiction. Priyanka told him that he would have to quit alcohol if he wanted to get cured of TB. He said that was an impossible task for him to do. She retorted that in that case the TB medicines would be ineffective, and he would die sooner or later. That perhaps set alarm bells ringing and Surendra promised to try to quit alcohol. And he eventually did.

“Madam (Priyanka) had taken a lot of pains to get me started on treatment. Now I had to quit alcohol to get cured. This was not easy for me. I thought, let me have a quarter of a bottle of liquor at least. I went to the shop with money in my hands. But suddenly I do not know what came over me. I came back to my hutment without buying any liquor, drank a glass of water and lay down. That moment I left drinking once for all,” shared Surendra.

Slowly his condition improved. He regained his strength and started walking and even lifting 10-12 kg of weight as part of his ragpicking work. Soon after, he could go to the clinic to collect his medicines with his 10-year-old grandson. His neighbours’ attitude had also changed. They no longer discriminated or stigmatised him.

There was more trouble brewing

But the path to his recovery was fraught with more challenges. In mid-2023, Delhi battled one of its worst flood-like situations in several pockets because of heavy rains. Many media reports described it as the worst floods in the last 40 years (in terms of volume of rain that poured in a single day).

Like many other homeless people, Surendra and his wife were washed away in the swirling flood waters.

“All my belongings, including my medical documents and medicines, were swept away in flood waters. Only the clothes I was wearing were left. I was carried far away by the flood waters and almost got drowned under a big pipe. It was only Madam who searched for me and found me lying unconscious on the bridge. She got my medical documents made again, arranged for my medicines, and got me food ration also”, recalled Surendra.

Priyanka had searched for him frantically. Eventually she found him after a few days in some faraway place alongside the elevated road, unconscious and shivering, wrapped in a plastic sheet.

“I used to follow up Surendra. Initially I did it daily. But as his condition improved it was once a week. When I went to him on one of the days, I found the whole area inundated with flood waters. People said that many had been washed away. I wondered if Surendra too was one of them. After 3 days of hopeless searching, I found him in a very bad condition. But I was relieved that I had at least been able to find him. I was so relieved. We save the photo of our patients in our phones. When I was looking for him, I showed his photo to the many people lying on the road. One of them recognised his face, and pointing in a particular direction he said that ‘this man was lying there.’ When I reached there, I found him lying unconscious wrapped in a plastic sheet. I woke him up. He said he had no food to eat, his medicines were also washed away, he was unable to walk. I told him not to worry, as I was there to try my best to help him,” shared Priyanka.

She straightaway rushed to the TB clinic in Shastri Park hospital, met the doctor and told him about the predicament of her homeless patient. The doctor and other healthcare workers all came forward to help Surendra. They gave her his medicine supplies, new documents were made, and also a Poshan Potli (a bag full of food grains). Priyanka also sought help to arrange some clothes for him.

Priyanka’s yeo(wo)man service brought Surendra back to life

Surendra is hugely obliged to Priyanka: “I owe my life to Madam (Priyanka). she has done a lot for me. She got all my tests done. She would collect the medicines for me from the health centre, as I was too weak to stand in the queue for long. Her unflinching support gave me courage. I started regaining my confidence and determination to get well. I would take my medicines regularly on time. On her insistence I even left alcohol. This took immense efforts, but once I left it, I never went back. Now I feel much better. And the entire credit goes to Madam, who gave me a new lease of life. If I had not met her, I would have died, even before starting the treatment. It was only due to her continuous support that I could complete my 6 months long treatment and defeat TB”.

He added: “I do feel giddy at times. I also cough sometimes, especially in the mornings. Perhaps that is due to my habit of smoking bidis. My body aches if I walk for long or lift heavy load. Ragpicking is hard work. But it is my only source of income, so I cannot leave it,” added Surendra, who is back to his arduous job of ragpicking.

Even after completing the treatment, when a need so arises, Surendra calls Priyanka to get nutritional support and receives it as possible.

Though same day test and treat became a reality for Surendra, it happened perhaps a year or more too late. He began his treatment for drug-sensitive TB of the lungs in August 2023. He completed his treatment in February 2024. Early TB diagnosis remains vital if we are to stop the spread of infection, reduce human suffering and eventually end TB.

TB survivor champions the fight against TB

Surendra has become a TB advocate in his locality and spreads awareness on TB in the community. He tells them to contact Priyanka in case of any TB symptoms. He shared Priyanka’s phone with a presumptive TB patient who contacted her. She got his x-ray done and sputum tested. He too tested positive and is now on treatment.

Surendra’s message for everyone is that “if you want to get well, you must quit alcohol. And if you have symptoms like prolonged cough, fever, or weight loss, please get screened for TB. All TB patients should take their medicines on time as advised by the doctor, eat properly, and complete their treatment. The support of Madam and others like her (community health workers) or friend is essential for people like me, to share our problems, get help, and defeat TB.”

Priyanka is very happy that she was able to save the life of Surendra who had lost all hope. Her words echo a lot of empathy for the homeless and other people who are forced to live in dehumanising conditions: “Some people may not have anyone to care for them. They do not know how to navigate the health system. A little bit of help from us will go a long way in mitigating their problems. I want all TB patients to take their medicines on time and complete their treatment - not leave it midway - and take a nutritious diet. Then we will be able to defeat TB. TB will be vanquished, and we will win the battle against TB”.

Reaching the unreached to stop missing TB cases

The likes of Priyanka 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.

Priyanka’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 and Training Institute (JSI), in close coordination with Indian government's National TB Elimination Programme (NTEP).