Rishikesh: Sita Devi (42), a mother of six, lives in an urban slum in Uttarakhand's Rishikesh. This slum area is also known as the Bihari Basti among locals.

Sita Devi's 15-year-old son, Ramesh, is battling tuberculosis (TB), a bacterial disease that mostly affects the lungs, but can also impact the bones, lymph nodes and other parts, and can be life-threatening if not treated correctly and in time.

After Sita Devi's husband fell ill about a year back, and stopped working, she has been single-handedly responsible for their family of eight. "We are debt-ridden. We have taken a loan so that we could feed our son. We are unable to buy fruits and eggs. It's a big deal for us to give him regular meals daily," said Sita Devi, who makes a living by selling vegetables.

To provide financial assistance to patients suffering from TB, the government, in April 2018, under the National Tuberculosis Elimination Programme (NTP), launched the Nikshay Poshan Yojana (NPY). Under this scheme, TB patients are given Rs 500 every month for the duration of their treatment so that they can have nutritious meals. A typical course of treatment for TB lasts six months.

Sita Devi's son, however, has not received this amount, and he is not the only one, our reporting from Uttarakhand showed.

As per the National TB report released in March 2022, 23,574 TB patients were officially reported--known as 'notifications'--in Uttarakhand. Of these, the programme had bank details for 88.3% or 20,825 patients and just over half (56%) of the notified patients received Rs 500 under the Nikshay Poshan Yojana. Across India, 62.1% of 2,135,830 notified TB patients received this amount at least once.

Why its urgent to tackle malnutrition for TB elimination

The lack of nutrition and the risk of contracting TB are interrelated, found research published by the global organisation, the International Union Against Tuberculosis and Lung Disease (The Union), in December 2021. The lack of nutrition makes a person more susceptible to TB, while having TB increases the chance of malnutrition. Malnourished patients also find it harder to recover from TB.

Malnutrition impacts one of every four children under five years in Uttarakhand; 27% of children are short for their age, known as stunting, and 13.2% weigh less than they should for their height, known as wasting, according to the government's National Family Health Survey-5. As many as 59% of children below the age of five were anaemic, as were 42% of women, 15-49 years. In 2022, India was ranked 107 on the Global Hunger Index of 121 countries.

India's TB eradication drive started in 1962. On September 9, 2022, President Droupadi Murmu reiterated India's aim to eliminate TB from the country by 2025, and announced the Pradhan Mantri TB Mukt Bharat Abhiyan. India aims to reduce new TB cases to just over 4 per million, according to the 2017-2025 National TB Eradication Strategic Plan. Without tackling malnutrition, it would be difficult to eliminate TB, experts say.

The government's estimates based on a prevalence survey between 2019 and 2021, say that India has 312 cases for every 100,000 population. Uttarakhand's department of Medical Health And Family Welfare estimates that the state has 275 TB cases for every 100,000 population.

"We collect data of patients suffering from TB. However, there is no column that mentions their financial situation. The aim of the Nikshay Poshan Yojana is to provide financial assistance to people belonging to all financial backgrounds," said Manoj Verma, Dehradun district's TB officer. "The Nikshay Mitra Yojana has been launched to help families that are battling poverty so that any individual, organisation, officer or public representative can adopt TB patients and look after them."

Non-payment of the Nikshay Poshan money

Sita Devi had to borrow money to take care of her 15-year-old who has TB.

Ramesh's health had worsened as it took three-four months to detect his TB, Sita Devi said. During this time he was treated at various health facilities, "but his fever was not coming down and he had gotten very weak," she said. "He is on medication now."

Like Sita Devi, Neelam (22) and Rinku Devi (37) also live in Bihari Basti. Neelam's six-year-old son, Aaditya, and Rinku's 13-year-old son, Suraj, have been on TB medication for the past seven months. Regular TB takes six months to treat but drug-resistant forms of the disease can take longer, up to two years to treat, and treatment often has side-effects. Neither child has received the Rs 500 a month.

Many families living in the narrow lanes of Chandreshwar Nagar, close to the Bihari Basti, were also battling both, TB and malnutrition, we found. Bina Pal, 7, has TB and weighs just 15 kg. A seven-year-old girl should weigh between 20 and 22 kg, said Shekhar Singh, a Lucknow-based chest disease expert.

Bina's father is a daily wage earner and is single-handedly feeding his family of six. Bina's maternal grandmother, while showing Bina's medications, said: "We try our best to give her milk every day. But if we give milk to one child, the others will ask too." Bina's grandmother was talking about Bina's two younger sisters, sleeping in a wooden cot in the one-room thatched roof house. Living in such close quarters, they too were at risk of contracting TB for the first 56 days of Bina's treatment.

Seven-year-old Beena has TB, and weighs just 15 kg as compared to the acceptable weight of 20-22 kg for her age.
Malnourished patients find it harder to recover from TB. Photo credit: Vasha Singh

"It's been more than nine months and the beneficiaries are yet to get the small amount of Rs 500," said Hemlata, the founder of Rishikesh-based non-governmental organisation AAS (Action for Advancement of Society, which provides nutritious meals to TB patients). "Most of the families having TB patients are not able to provide nutritious meals to patients. In the absence of balanced and nutritious meals, it becomes difficult to treat them."

Uttarakhand's state TB officer Pankaj Singh blamed "software-related technical issues" for the non-payment of the money for nutritious food. He added, "we have resolved the issue and we will start transferring the amount from October."

Parul, who uses only her first name, succesfully fought TB and now volunteers with nonprofits and motivates patients to stay strong and fight the disease. She told us that patients who had been registered earlier had started receiving the food benefit from the first week of October. However, two of the families we had spoken to had not received the money as they were registered in July 2022.

Sita Devi told us they had not received the money until October 7, 2022. Neelam had received the first tranche.

"I have to pay the rent and the school fees. I don't have enough money to buy fruits for my children. I give my son whatever I manage to make," says Mira Devi, whose youngest child, 14, has TB. Mira, who is separated from her husband, takes care of her three children with the Rs 10,000 she makes as a domestic help. "People tell me that the government gives money to TB patients, but I have not received a single paisa yet."

A version of this story was first published in IndiaSpend Hindi.

(This research/reporting was supported by a grant from the Thakur Family Foundation. The Thakur Family Foundation has not exercised any editorial control over the contents of this reportage.)

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