Sangeeta* has tuberculosis and has been on medication for more than a year. Recently, the government treatment provider who supplies her the medicines asked for her Aadhaar number and bank account number, which he said were needed to access compensation that the government is planning to give tuberculosis patients. Sangeeta has neither.

The 20-year-old woman is a migrant in Delhi and has no proof of residence in the city, which is required to get Aadhaar, the 12-digit biometrically-linked unique identity number given to residents of India. To open a bank account, she needs both proof of residence and Aadhaar. For enrolling in the Aadhaar database, she will have to go back to her husband’s home town in Bihar where she can show his home address as proof of residence.

Sangeeta’s predicament is not unique – across India, people entitled to government benefits are unable to access them because the benefits have been linked to Aadhaar. In the case of tuberculosis patients, however, the government has put the cart before the horse. To ensure they do not drop out of treatment, the government wants to give them money to buy nutritious food and compensate them for loss of wages and travel expenses in the course of their treatment. The health ministry is still to finalise the Direct Benefit Transfer scheme by which money would be transferred into the bank accounts of patients registered with the government-run tuberculosis programmes. But it has already directed officials of the Revised National Tuberculosis Control Programme to collect Aadhaar and bank details of registered patients.

In a letter on November 27, Manoj Jhalani, additional secretary of health and family welfare, told officials of the National Health Mission that they should prioritise updating Aadhaar and bank account details of tuberculosis patients to “accelerate roll out of Direct Benefit Transfer Schemes” under the tuberculosis control programme. Jhalani told that the scheme would be finalised soon.

On June 19, the government had issued a notification making Aadhaar compulsory for tuberculosis patients and health providers seeking cash assistance under the Revised National Tuberculosis Control Programme. In response, state health departments have been pushing their staff to collect the Aadhaar numbers of patients.

In Delhi, several patients who submitted their details have completed their treatment and are now asking where the promised compensation is. Even Vipin Sharma, the government provider who supplies Sangeeta the medicines that are part of the internationally-recommended treatment protocol called Directly Observed Treatment Short course or DOTS, has told her the government will transfer money in her account after she completes her treatment.

When is the money coming?

Dharmender Sharma, senior treatment supervisor at Nehru Nagar Chest Clinic in South Delhi, said he was instructed by health officials to start collecting Aadhaar numbers around January – even before the central government issued the notification in June. He began doing so in earnest in April. “It has become mandatory,” he said. “The patient card itself has fields for Aadhaar and bank details to be filled.”

Many patients are unable to supply these details. Migrant workers like Sangeeta and people from marginalised communities like intravenous drug users often do not have enough identity proof to get their Aadhaar cards.

Sharma said this is the first time the tuberculosis programme has asked for any documents. Treatment supervisors used to ask for patients’ mobile numbers to keep in touch and ensure they took the required course of medicines. Sometimes patients were reluctant to share their mobile numbers, to safeguard their privacy in light of the stigma still attached to tuberculosis. Treatment supervisors say several patients are now reluctant to give their Aadhaar and bank account numbers.

“We tell them that they may get money in their account after the treatment,” said Parvez Ahmed, a treatment supervisor. “But it becomes awkward because we are also clueless as to when the scheme will begin.”

One of the ground level staff joked and said, “Maybe the scheme is like the promise of bringing back black money in our country? It may never come.”

Dr Ashwani Kumar, Delhi’s tuberculosis officer, said that he is aware that patients are sceptical about the scheme. “But we will help them in every way to either get Aadhaar card or bank account.”

Benefit transfer problems

The direct benefit transfer process for tuberculosis patients is itself beset with problems. Currently, all patient details are supposed to be filled into an Internet-based software called Nikshay, which helps monitor patients. The government has now integrated Nikshay with Aadhaar to deliver financial benefits.

But patient data is not entered by field officers in real time as patients submit the data, because these field officers do not have Internet-based devices to access Nikshay. Instead, the data is entered in bulk by a data entry operator. This results in delays and errors. A data entry operator at the Nehru Nagar clinic said that, at any given point of time, he has at least of a month or two of Nikshay data to be filled.

“Before starting a direct benefit transfer programme, the government needs to fix these problems first,” said one of the supervisors. “Otherwise there will be major confusion.”

Meanwhile, Jhalani told that the benefit transfer scheme will be considered by an Empowered Programme Committee of the National Health Mission, and then be reviewed by the Mission Steering Group. He said that the process would take about a month.

“We have to take a call on whether we will provide support for nutrition in kind or cash,” said Jhalani. “Aadhaar will be compulsory as of now.”

The Supreme Court is currently hearing petitions against linking welfare schemes to Aadhaar. Jhalani clarified that the programme will follow the Supreme Court orders once the court decides these cases.

*Name changed to protect identity.