TB patients stranded: Delayed support, lost hope, a cry for jobs

Patients at the TB hospitals are well fed but they worry about what will happen after discharge

Sarita, aged 28, has been battling MDR tuberculosis since the age of 16. In 2018, the Centre introduced a direct benefit transfer scheme for TB patients, providing them with a monthly payment of Rs 500 to meet their nutritional needs. Unfortunately, Sarita only received this support in 2021. Reflecting on the delay, she said, "First, it went into my husband's account, and then my bank account was linked."

The payments continued until approximately August of the previous year when she suddenly stopped receiving credit SMS on her phone. She explained, "That was around the same time I had to be admitted to the hospital as my condition worsened," as she sat at Sewri's TB hospital, where she is receiving treatment for a year now.

With her husband having abandoned her a couple of years ago, Sarita now finds herself without anyone to care for her. She said, "I am well-fed at the hospital, so I do not need that money as of now, but what will happen after I get out of here?" Sarita's ultimate aspiration is to achieve self-sufficiency, as there is still a stigma surrounding TB that makes patients feel excluded from social and professional settings. She said, "The government needs to focus on providing jobs for TB patients."

Ganesh Acharya, a TB survivor and patient-rights activist based in Mumbai, pointed out that the severe side-effects of TB medications can render someone disabled. He stated, "There have been instances where people have lost their hearing. Even today, we do not have a program to integrate TB patients into the workforce or establish a mandatory workplace policy."

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While individuals like Sarita are taken care of by the TB hospital, home-based TB patients face greater challenges when government schemes lapse. For example, Megha, a 28-year-old resident of Malad, works as a data entry operator and earns approximately R10,000 per month. She has been receiving Rs 500 per month in her bank account, but her expenses increased when there was a shortage of essential TB medicines at the DOTS centres. She said, "Instead of spending it on food, I had to spend more than that on medicines from a private pharmacy."

There are also cases like that of 21-year-old Naushin, who has been an MDR TB patient since 2020. Her family only learned about the DBT scheme this year. Her husband, Shoaib, explained, "When her TB was first diagnosed, some people had taken down her sister's bank details. We provided them and then forgot about it. I checked with DOTS officials recently on why she hasn't been receiving the money, and all they said was that it is pending transfer."

State TB official Sunita Golhait acknowledged that technical difficulties could cause delays in patients receiving their money. She told mid-day, "Patients' bank details are taken as soon as they are notified. Sometimes delays can occur when there are no funds, but that is not the case at the moment."

Lancet study: In a recent Lancet study titled "Nutritional support for adult patients with microbiologically confirmed pulmonary tuberculosis: outcomes in a programmatic cohort nested within the RATIONS trial in Jharkhand," it was concluded that weight gain, particularly within the first two months of the trial, was associated with a substantially decreased risk of tuberculosis mortality.

The study involved a total of 2800 patients, comprising 1979 men and 921 women, who received nutritional support in the form of food rations (providing 1200 kcal and 52 g of protein per day) and micronutrient pills.