Tuberculosis (TB) is one of the world’s deadliest infectious diseases. India bears a crushing burden, accounting for one-fifth of global TB cases and an estimated 300,000 deaths annually, according to the World Health Organization.

But the disease doesn’t kill alone. Undernutrition acts as a lethal accomplice. Indian TB patients are disproportionately malnourished. Official figures reveal shockingly low median weights – 43 kg for men, and a mere 38 kg for women. The most vulnerable, those in rural and impoverished areas, often fare even worse (Central TB Division, 2017).

The India TB Report 2023 highlights undernourishment as the leading risk factor for TB. As a WHO report emphasizes, “TB thrives in conditions of poverty and can worsen poverty” – creating a vicious cycle.

The Indian government recognizes the link between tuberculosis (TB) and undernutrition, deploying two key programs as a redressal mechanism. Nikshay Poshan Yojana (NPY) is a Direct Benefit Transfer (DBT) scheme that delivers INR 500 monthly to TB patients for nutritional support during treatment.

The second is the Nikshay Mitra Program – a community-driven initiative that encourages volunteers (Nikshay Mitras) to provide supplemental aid, often in the form of food baskets. It was launched on 9th September, 2022. Nikshay Mitras can be individuals, NGOs, cooperative societies, faith-based organizations, corporations, political parties, and others who adopt TB patients for a minimum period of six months to a maximum period of up to three years.

Does the scheme work?

Prime Minister Narendra Modi has heralded the Nikshay Mitra scheme as a potent weapon in India’s battle against Tuberculosis, aiming for its elimination by 2025. Yet, the gap between political rhetoric and on-the-ground reality persists.

Take Usha Parika’s experience. Her access to food baskets feels more like a matter of chance than a reliable pillar of support. The 28-year-old student from Raipur, Chhattisgarh, is battling TB while preparing for civil service exams. Her parents are farmers, and the family receives financial support from her uncle, a deputy collector. “I don’t get food baskets every month,” she explains. “One day I went to the hospital to get my medicines and saw that some people were getting food baskets…they gave the missing person’s basket to me. I wasn’t even aware that such a scheme existed before that,” she said.

Ajay Yadav’s story highlights similar inconsistencies, driven by a lack of clear distribution schedules or communication channels.

The 24-year-old daily wage worker from Raipur, Chhattisgarh, earns a meager Rs 200 a day. His father also suffered from TB, and the family lacks basic resources like a cell phone or bank account. Ajay depends on Parmila Sharma, an ASHA worker, to collect his TB medication. The Nikshay Mitra support he receives is sporadic. “When some rich people come, that day they get the food basket, there is no specific date fixed,” Parmila says. Additionally, Parmila faces challenges with medicine shortages: “I ask the person in charge to give me medicines for the entire month…but they only give me 15 days’ medicine saying that there is no stock.”

Tilak Devi, a TB patient in a wheel chair waits outside Nehru TB Hospital, Lajpat Nagar for her husband who has gone to take medicines for her.  Pic – Stephin Thomas

In Madanpur Khadar, Delhi, 60-year-old Tilak Devi suffers from severe TB. Her husband works as a daily wage mason. The family was unaware of her TB diagnosis for an extended period due to an initial misdiagnosis of Typhoid. Crucially, they’ve received no Nikshay Mitra support or even the basic Rs. 500 monthly government aid. “There is no community support that the family has received during times of stress, confusion, and exhaustion.”

Shobha Devi, a 58-year-old Delhi resident, relies on her daughter Anita for care during her battle with TB.

Anita reveals the family’s frustration: “I asked about the food basket 2-3 times to the hospital staff… but instead, I was advised to become a Nikshay Mitra.” Shobha Devi’s husband is a retired security guard with no pension, and they would benefit significantly from the scheme.

Food basket content lacks standardization

Even when Nikshay Mitras provide food baskets, adherence to official guidelines is weak. Basket content is frequently determined by individual donor preference rather than the patient’s specific needs.

Budgets also vary widely, despite official recommendations of spending around Rs 800-Rs 1000 per basket.

“I used to give protein-rich foods but was told I could give anything I wanted. I made baskets costing Rs 250, and feel good that I helped a TB patient,” said Vikas Sahu, a Nikshay Mitra from Chhattisgarh. He was never provided with official food guidelines to follow.

The food basket must follow the following guidelines

Recommendations by the Government for Food Basket for TB patients. Source : PM TB Mukt Bharat Abhiyaan Guidance Document

Despite government recommendations, some Nikshay Mitras simply give cash for several months. While this financial aid is helpful, it duplicates the efforts of the government’s Nikshay Poshan Yojana Scheme, undermining the Nikshay Mitra program’s unique focus on community engagement.

NGOs tend to demonstrate greater commitment as Nikshay Mitras compared to individuals. Most individuals and NGOs we interviewed only became Nikshay Mitras after attending awareness programs or being directly enrolled by officials.

No community engagement, lack of volunteerism

The scheme faces challenges in mobilizing individuals and communities to support TB patients. Health officials struggle to overcome public reluctance and the stigma surrounding tuberculosis.

The NIKSHAY portal boasts over 155,809 registered Nikshay Mitras pledged to support 870,775 TB patients. Strikingly, the largest category of enrollees is individuals, with 107,543 volunteers. This is followed by: 3,955 NGOs, 2,097 Corporations, 6,953 Political Parties. However, our investigation found self-registration by individuals to be virtually absent.

“No one from the general public is ready to volunteer for the Nikshay Mitra Scheme. With elections, heat, and festivals in our area, interest has waned. We’ve reported this to higher authorities, but the stigma surrounding TB remains a significant obstacle,” says Dr. Arivind Kumar, DTO of Gopalganj, Bihar.

TB supervisors, desperate to meet enrollment goals, admit to registering their entire departments as Nikshay Mitras under the guise of anonymity. “Nobody was interested in becoming a Nikshay Mitra, so I registered 268 people from my health department. Only 3 were actual community members,” confessed an official from Chhattisgarh. This practice completely undermines the scheme’s intended focus on community engagement and volunteerism, designed to support TB patients.

In Manipur’s Senapati district, health officials struggle to find Nikshay Mitras. “In 2023, just three elected representatives supported all TB patients in the district. Now, only three individuals are supporting 17 patients, while many more patients await adoption,” revealed a health department official on condition of anonymity.

According to supervisors, many Nikshay Mitras enroll without genuine intent to provide support, abandoning their pledges within months. This creates additional work for them, who must then remove inactive Nikshay Mitras from the database.

Experts divided on model’s success

“The Nikshay Mitra Initiative has improved treatment completion rates,” says TB survivor and advocate Raghavan Gopakumar. “Patients can better tolerate medications on a full stomach thanks to the nutritional support.”

However, Brinelle D’souza, chairperson of TISS’s Centre of Health and Mental Health, emphasizes the need to shift focus from charity to citizen rights and entitlements. She stresses that the key question is whether such government programs ensure individuals receive adequate nutrition. “In poorer families, the provided food likely becomes a shared resource, diluting its intended impact,” she notes.

“The program’s model might make it vulnerable to scams”

D’souza also highlights the critical role of motivated health workers for program success. “Genuine participation as Nikshay Mitras depends heavily on proactive TB officers. They serve as motivators, building community trust and a sense of shared purpose.” Without them, the scheme will not succeed.

Finally, she emphasizes the need for robust accountability systems. “The program’s model might make it vulnerable to scams,” she says.

How can one enroll as a Nikshay Mitra?

They can register themselves through the NIKSHAY web portal or contact their nearest Primary Health Center (PHC), Community Health Center (CHC), or District Tuberculosis Officer for assistance in registering. Additionally, Nikshay Mitras who wish to remain anonymous can donate to specific bank accounts created for this purpose in various districts.

Banner Image: (The Monthly food basket distribution by Nikshay Mitra to TB patient. Image credit: X post Central TB division.)