Taming Tuberculosis

OVER A CUP of tea with the chief medical officer of Hisar, Haryana, in May, JK Dang, a 78-year-old retired professor, came to know of an adoption scheme for tuberculosis (TB) patients. He immediately agreed to adopt 22 patients, before even asking his colleagues at the Vanprastha Senior Citizens Club. And the others, all senior citizens, appreciated his decision. Each month, they pack 400 grams of protein powder, two packets of Nutrela, a kilogram each of roasted gram, plain gram, jaggery and gram flour in cardboard boxes to be taken to a Primary Health Centre (PHC) at Gangwa village, about four kilometres from Hisar, which the patients visit.

“We find out if they are taking their medicines on time and enquire about their progress report. We now have 25 patients and are planning to adopt another 25,” says Dang, general secretary of the club. The then Hisar chief medical officer (CMO), Ratna Bharti, had informed him about the Narendra Modi government’s voluntary adoption scheme, mainly aimed at addressing nutritional requirements of needy TB patients in the neighbourhood. Under the scheme, Ni-kshay Mitra, donors can also offer diagnostic and vocational support to patients.

Headquartered in Kolkata, the Goodricke Group of Companies, with tea estates across Assam and West Bengal, including the Darjeeling hills, provides dry rations monthly and an egg every day to 236 TB patients (as of August) in 29 of its tea estates. “They are given an egg at the hospital, which they visit every day. This way, we ensure they are taking their medication regularly,” says OP Prasad, senior CMO of the Group. The patients are mostly tea-estate workers, among whom the prevalence of TB has been high. The Group, a diamond member of the corporate TB pledge, has been working on it for the past two years. With the introduction of Ni-kshay Mitra, it has expanded its corporate social involvement to include patients from neighbouring villages.

Prasad had first heard of the idea of adopting patients when he attended the virtual World TB Day programme on March 24, where Uttar Pradesh Governor and former Gujarat Chief Minister Anandiben Patel advocated adoption of TB patients, saying a “jan andolan (people’s movement)” was needed to eliminate TB by 2025. Inaugurating the “Step Up to End TB” event, Patel spoke about her experience in encouraging individuals, organisations and NGOs to adopt children suffering from TB. In 2019, Patel had adopted a girl child infected with TB, after which the staff at Raj Bhavan took 21 TB-afflicted children under its wings. Union Health Minister Mansukh Mandaviya also spoke of a “jan andolan”, a striking feature of Prime Minister Modi’s governance, by involving society with government to achieve the target of eradicating TB.

According to health ministry sources, the idea was then explored at the national level. As word spread about the adoption scheme, organisations, corporate houses, politicians and individuals came forward to adopt TB patients. With the National TB Prevalence Survey estimating all forms of TB in India to be at 312 per lakh among the population in 2021, Covid causing disruptions in healthcare and funding remaining a challenge, the Modi government launched the novel plan—a nationwide people’s movement to contain the disease. Mandaviya described it as “jan bhagidari (people’s participation)”, a concept Modi has championed for a series of causes—Swachh Bharat, the LPG subsidy surrendering drive, water conservation, Digital India, natural farming, “Har Ghar Tiranga” on 75 years of Independence, Atmanirbhar Bharat with “Vocal for Local”, or even Mann ki Baat. The Ni-kshay Mitra scheme is characteristically in line with Modi’s mantra of turning people’s issues into mass movements.

Till September 20, 965,589 patients have agreed to be adopted across the country, as per the Ni-kshay dashboard. Of this, commitments have been made by Ni-kshay Mitras for 965,586 patients. Among the 16,303 Ni-kshay Mitras registered, there are 9,134 individuals, 1,678 institutions, 1,340 NGOs and 691 political parties. By 2024, when Modi faces the next General Election, the cumulative number of the scheme’s beneficiaries, most of whom would be from poor and socially marginalised backgrounds, would have multiplied. While some cases would have completed treatment, new ones would have been added, and a Ni-kshay Mitra would support those who gave consent. The prime minister has set the target of making India TB-free by 2025, five years ahead of the global target for eliminating the disease.

As word spread about the adoption scheme, organisations and individuals came forward to adopt TB patients. The Modi government’s plan is a nationwide people’s movement to contain the disease

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“The tuberculosis treatment can go on from six months to two years, but the symptoms can disappear in two months of treatment. The Ni-kshay Mitra initiative is aimed at providing healthy food, psychological support and ensuring the patient completes the treatment,” says Raghuram Rao, assistant director general, TB, in the health ministry. According to the World Health Organization (WHO), in 2020, 30 high TB-burden countries accounted for 86 per cent of new TB cases. Eight countries accounted for two-thirds, with India leading the count. The country has 26 per cent of the world’s TB cases and 34 per cent of the deaths. The TB treatment success rate has, however, improved from 78 per cent in 2016 to 84 per cent in 2022.

For a disease yet to be completely free of the stigma that was attached to it, there is concern about unreported cases. Shrouded in secrecy, “TB” was unuttered even in the families of patients. Katherine Frank, the author of Indira: The Life of Indira Nehru Gandhi, wrote about how even Dr Auguste Rollier, who was treating Indira Gandhi for TB at Les Frênes, his luxurious sanatorium in Leysin in Switzerland, in the late 1930s, did not frankly discuss her prognosis with her. Gandhi, who was in her early twenties, was aware of the symptoms, having lost her mother Kamala Nehru to the disease in 1936. “To an extent, Indira and Nehru colluded in Rollier’s deception, for they, too, never mentioned tuberculosis in all the letters they wrote to each other while Indira was at Les Frênes. Indira almost certainly told Feroze the truth in her letters to him, but to her father, she wrote only of her chronic low weight and increasing depression. She wrote to Nehru of the ‘gloom and darkness of my mind’. She was wary of lying in bed and terribly lonely,” writes Frank. After over four months in bed, Indira Gandhi worried about the cost of her treatment, with her weekly bill then averaging 180 francs.

IN INDIA, THE first open air institution for the isolation and treatment of TB patients was started in 1906 in Tilaunia near Ajmer and in 1908 in Almora in the hills of what is now Uttarakhand. At the first All-India Sanitary Conference held in Bombay in 1911, the discussion on health issues was dominated by plague, malaria, dysentery and cholera. A report on TB published by Dr JA Turner, health officer of Bombay, was, however, cited at the conference. It said the mortality from TB in cities like Calcutta and Bombay was considerably higher than in Glasgow, Birmingham or Manchester. TB in India was formally recognised in the second conference in 1912 in Madras, where a resolution was passed on it. The Joseph Bhore Committee’s report of 1946, which underlined the wide gap between rural and urban healthcare, estimated that about 2.5 million TB patients required treatment in the country while only 6,000 beds were available. It recommended a TB clinic in every district and mobile clinics in rural areas. To oversee that, in 1949, two years after Independence, the Jawaharlal Nehru government established a TB division in the health ministry. It was 13 years later that the first National Tuberculosis Programme (NTP) was launched in 1962, the same year as that of the Sino-Indian war. But given the programme’s shortcomings, one of those being inadequate funding, it was transformed into the Revised National TB Control Programme (RNTCP) in 1993, the year WHO declared TB a global emergency, recommending the Directly Observed Treatment-Short Course (DOTS) to all countries. In India, DOTS was launched in 1997 and covered the entire country by 2005. Although RNTCP achieved the global case detection and cure targets by 2007-08, undiagnosed, mistreated and multi-drug cases continued to drive the TB epidemic, according to the National Health Portal. TB became the leading cause of death among people with HIV/AIDS. The National Strategic Plan (NSP) for Tuberculosis Control 2012-2017 set the goal of “universal access to quality TB diagnosis and treatment for all TB patients in the community” for a TB-free India. Six decades after the first TB programme was launched, India is still battling the disease.

“Going by the statistics, the 2025 goal looks challenging, but with a mass campaign like Ni-kshay Mitra it can be achieved, provided there is commitment from everyone,” says Vikas Kaushal, head of the health division at Gurgaon-based ‘Save the Children’, which has adopted 145 TB patients, all below 14, mostly from poor families. A vendor carries a high-nutrition kit of rajma, soybean, roasted gram and dates packed in gunny bags to their homes every month.

Bhushan Mutha, a grocery store owner in Wadgaon in Pune district who sends groceries to the 16 patients he has adopted as an individual, says that whenever there is time he and his friends visit them. Each kit costs ₹880-₹1,000. “People are generally scared to go near them. This is a good programme. I feel we should also contribute to the government’s efforts.”

India reported a 19 per cent rise in notified TB cases in 2021 over the previous year, according to the India TB Report. The total number of TB patients notified during 2021 was 1,933,381 as against 1,628,161 in 2020. “This is also because the coverage has improved and there is an increase in the number of cases being reported, more so from the private sector, which also means all these people can be treated on time,” says Rao. As per the National TB Prevalence Survey Report, 31 per cent carry the TB infection, but in a healthy person there is only a 10 per cent chance of the dormant infection developing into the disease.

“The effort is to ensure against the infection breaking into disease. With contact tracing of high-risk people, new diagnostic techniques and preventive medication, the numbers could come down by 15 per cent annually,” says Rao. The government is factoring in three main indicators—the incidence of TB per lakh of the population, mortality rate, and out-of-pocket expenditure—in its strategy to meet the 2025 target of a TB-free India.

India has 26 per cent of the world’s TB cases and 34 per cent of the deaths. The TB treatment success rate has, however, improved from 78 per cent in 2016 to 84 per cent in 2022

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One of the oldest diseases, the challenge in fighting TB is that its bacteria can remain dormant for years and can become active when the immunity is compromised and the body is weak, says Hyderabad-based pulmonologist Raghavendra Reddy P. “The adoption scheme is a good initiative. Besides, apart from treating symptomatic cases, contacts of infected people are now being given preventive medication and counselling. I cannot say 100 per cent whether India can or cannot achieve the 2025 goal, but with three years still to go we can definitely hope it will.”

The India report released this year estimated 4.93 lakh deaths, excluding HIV cases, in 2020, the year after Covid struck. This was an increase of 13 per cent over 2019. The report stated that India faced setbacks during the pandemic in its fight against TB. The TB dashboard looks challenging. But Guwahati-based Piya Barua (name changed), 26, adopted by a doctor three months ago, is on the road to recovery, like several others. “For those who cannot afford a nutritious diet, a Ni-kshay Mitra comes like an angel,” says Barua.

As Reddy says, there is hope that the long battle against TB is in its last stages.

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Amita Shah