Sayera Bano, a resident of Mustafabad legislative constituency in North-East Delhi, cannot sit straight without the support of spinal braces, a jacket like equipment to give strength to the spine. Bano has Pott’s Spine, in other words, tuberculosis of spine. Due to the disease, her lower spine is damaged leaving her in constant pain and unable to walk.
Bano was the main bread-winner of the family. She used to embroider salwar-suits for wholesale dealers on a piece rate basis. She would earn Rs. 150-200 a day and run a family of five – her, her mother-in-law, husband and two young children. Her husband has a recurring problem of painful boils on his left leg and hence cannot go for work on a regular basis. But since last April, he has work stopped due to TB.
“We have helpful neighbours. They provide for us as much as they can and we somehow eat once a day. But beyond that, there are no resources in the house for us to carry on,” she said. Mustafabad is a locality of lower middle class families, majority of them daily wage earners staying on rent. There is little help that Bano’s neighbours can provide despite their will.
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This is not good for the recovery of a TB patient. Undernutrition is closely associated with TB. As TB is a disease of largely present among the poor now, lack of nutrition is common among patients. The double whammy is that low levels of nutrition are associated with relapse of the disease and higher possibility of death among patients. According to the National Tuberculosis Elimination Programme (NTEP), formerly called the Revised National Tuberculosis Control Programme, average weight of an adult male TB patient in India is 43 kg while the same for females is 38 kg.
“This is almost like the weight of a child. Such patients are not able to work at all. And these figures are average which means there are at least 50% of patients who have weight below them. We have seen patients weighing 32-33 kg. They cannot even get up from bed,” said Dr. Anurag Bhargava, Professor, Department of Medicine, Yenepoya Medical College, Karnataka.
Sayera’s weight is above 50 kg. “But she has been losing weight very fast. It is quite visible,” said Tasleem Siddiqui, Bano’s husband.
Recognising the importance of nutrition in curing TB, in April 2018, NTEP started Nikshay Poshan Yojana (NPY), a nutritional support programme for all TB patients. It is a Direct Benefit Transfer scheme under which financial incentive of Rs. 500 per month for each notified TB patient is given for the duration when the patient is on anti-TB treatment.
However, even after two years, the scheme’s implementation is still poor. Bano has not received a single instalment of NPY despite having a registered number from NTEP’s Ghaziabad office since the beginning of her treatment. “I have been taking treatment for 11 months now. I submitted all requisite details including Aadhar number and bank details to the NTEP. But I have not received a single penny till now,” said Bano. As there is no regular income for the family, this is the only money she can use for her nutrition.
Bano’s doctor has told her to take a high protein diet which should include at least two eggs and two bowls of cooked pulses every day which she cannot afford.
Non-implementation of NPY is a story across India. For example, in July 2019 The Wire reported that the total notified patients under the NTEP as on May 27, 2019, in both the public as well as private sector in Rajasthan stood at 2,18,614 – of these, only 1,19,178 patients had received monetary benefits. The report goes on to show that there is duplication of Nikshay ids and hence a possibility that even this number of beneficiaries is higher than reality.
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The support of Rs 500 a month itself poses questions. Chhattisgarh government distributes ration to all TB patients in addition to the central government’s Rs. 500. It includes 1.5 kg of chick peas, 1 kg milk powder and 1 kg oil.
“The ration stays with lab technicians where TB patients have to come every two months to give sample for testing. They are given two months worth of ration on every visit,” said Prabir Chatterjee, Director, State Health Resource Centre (SHRC), Chhattisgarh. This scheme was a result of a pilot study by Jan Swasthya Sahayog, Ganiyari and SHRC which showed higher nutritional intake by patients when they were provided ration. In 2015, when the study was conducted, it cost those responsible for its implementation Rs 600 a month per patient.
“Giving ration instead of money ensures better outcomes. We have to understand that patients of TB come from very poor families. Many times they end up utilising the cash for needs other than food, which may be perceived as urgent for the family,” said Bhargava.
Another benefit of providing ration is that the patient is saved from fluctuations of prices and can continue with the required nutrition without break. Many models exist within India to provide ration to the patients. In districts such as Wayanad in Kerala, the village panchayats drop ration at TB patients’ houses.
“There is a workable model for the whole of nation if NTEP is willing,” said Balram of Right to Food, Jharkhand. “The accredited social health activists (ASHAs) have been tasked to follow up with TB patients. They are provided incentive to do the same. They can be tasked to provide ration also to the patients. They can collect it from a designated spot within the village and give it to the patient,” he said.
While it is a well-established fact that TB patients need to be provided with adequate nutrition, NTEP is yet to provide a comprehensive package to the patients. Till such hitches are not solved, patients like Bano will be left to fend for themselves which will neither cure TB, nor their poverty.
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The author is a Delhi-based health writer.