Ni-kshay Mitra: In Kerala and Tamil Nadu, privacy concerns keep TB patients away from scheme

The Ni-kshay Mitra (donor) is supposed to support the TB patients with nutritional kits, payment for additional investigations for the diagnosed TB patients, vocational support, and nutritional supplements.

But for that, the TB patients have to first give their consent to be supported. And the response on this count has been poor in these two states.

How does the Ni-kshay Mitra scheme work?

People and groups registering themselves as adopters on the Ni-kshay 2.0 portal — https://communitysupport.nikshay.in — need to finance the nutritional requirement of the patients they adopt.

Ni-kshay Mitra launched as part of Pradhan Mantri TB Mukt Bharat Abhiyaan/Union Ministry of Health and Family Welfare. (Supplied)

As per the website, adult patients will be given a monthly food basket consisting of 3 kg of cereals and millets, 1.5 kg of pulses, 250 g vegetable cooking oil, a kilo of milk powder or 6,000 ml of milk, while children will get the same items but in lesser quantities.

The entire food basket is estimated to cost an adopter between ₹1,000-₹1,500 a month.

The scheme was met with mixed reactions as some felt the Centre was “outsourcing” its responsibilities to private individuals and firms.

Others lauded the scheme as TB is directly linked to poverty and nutrition is an important part of its treatment.

The privacy concern

State and district TB officers in Kerala and Tamil Nadu said that the main concern of the patients in these two states is their privacy.

“People are not giving consent because of privacy concerns. There are many reasons for it. It ranges from their bank account numbers being shared to societal stigma. The issue with the scheme is that the names and addresses of these TB patients have to be put in the public domain,” Kerala’s State TB Officer Dr Parvathi AP told South First.

“People are not willing to disclose their identity, or their address, because of their safety. They are saying that they don’t know to whom their details will be forwarded,” said Dr. Parvathi.

“With many bank frauds happening around the country, people are reading WhatsApp forwards and warnings from police against sharing their bank details and Aadhar numbers with anyone. People are afraid that their bank account and Aadhar number will be misused,” Madurai District TB Officer Dr S Zufir Hassan told South First .

Social Stigma as names are revealed

The TB officers also said that there are many social stigmas still among people about the disease, because of which people are afraid to give consent for the scheme.

A doctor examining a tuberculosis patient at a TB hospital in India (WHO website)

“Many of the TB patients are daily wage labourers who need help. If people get to know that these people have TB, they will not be given job opportunities thinking that they will not work properly and even leave the work halfway,” said Dr Parvathi.

“Few of the TB patients have to get their sons or daughters married. And if people in society get to know that family members have TB, they will avoid the match,” Salem District TB Officer Dr S Ganpathy told South First.

Dr. Parvathi added that disclosing the disease to the family is a personal matter, but revealing it to society is different; it may have consequences such as being boycotted at social gatherings.

“This is also true with the educated people in the state; even they subtly try to avoid TB patients,” she noted.

State-level schemes

There are, moreover, several schemes run by these two state governments that local TB patients say they are satisfied with.

“People in Kerala who are below the poverty line are getting pensions and financial support, as well as nutrition packets in many districts. We are already providing a TB pension of ₹1,000 per month for the duration of treatment to TB patients with an annual family income of less than ₹1 lakh,” Dr Parvathi informed.

“There is TB treatment support group that links the patient to social welfare schemes such as the panchayat’s nutritional support project or alcohol de-addiction centres. People are already attached to these schemes and they don’t want to sign up for another one like the Ni-kshay Mitra scheme,” she added.

“Many NGOs have already taken up the responsibility of providing help to these TB patients. After checking test reports and learning where these TB patients stay, NGOs provide help,” said a district TB officer in Tamil Nadu.

Still asking people to enroll to Ni-kshay Mitra

Mandal- and block-level TB officers on the ground are, however, still making an effort enroll patients in the Ni-kshay Mitra scheme in both Kerala and Tamil Nadu.

“We are meeting TB patients and asking them to get enrolled, but the main issue is the revelation of their identity. One block TB officer told me that some of the people are willing to enroll in the scheme if their identity is not disclosed. We have sent the request to the ministry to remove the criteria of disclosing identity,” said Dr Parvathi.

AP, Telangana and Karnataka

In Andhra Pradesh, out of a total of 44,333 registered TB patients, 37,948 gave their consent to receive support under the scheme and all of them have been picked by Mitras (donors).

Similarly, in Telangana out of 36,307 TB patients, 30,153 have given consent and each of them is receiving support.

In Karnataka, too, of the 37,111 TB patients, 28,529 have given consent and each of them has been picked by a Mitra.

All-India figures

At the all-India level, of 13,50,608 registered TB patients, 9,89,074 have consented to the scheme while 9,74,964 Mitras have come forward to provide support to these patients.

India has the world’s highest TB burden, with an estimated 26 lakh people contracting the disease and approximately four lakh people dying from the disease every year, according to the Ministry of Health and Family Welfare.

The economic burden of TB in terms of loss of lives, income, and workdays is also substantial.

TB usually affects the most economically productive age group in a society, resulting in a significant loss of working days and pushing TB patients further into the vortex of poverty.