A humble TB treatment center weathers the Covid storm

1aAlmost an hour from the bustling railway station of Madhupur in Jharkhand, beyond the vast green landscape and kuccha and pucca roads, lies the small and beautiful Santhal village of Fatehpur in district Deogarh. As you descend towards the village you are greeted by the strong nocturnal fragrance of ‘Raat ki Raani’ and blooming red ‘Jaba’ flowers, next to a community tube well under a huge tree and chaupal. Across from a courtyard full of towering trees is humble, half-open little wooden gate that leads to an equally humble health centre and home, made of mud, with the name of the place inscribed on the wall: Ekta Niketan.

Through the period of the Covid deadly pandemic, when death, lockdowns, economic distress and joblessness ruled supreme, Santhals from several surrounding clusters of villages from the districts of Deoghar and Giridih, have been coming here for the treatment of tuberculosis, and other related health ailments. Over the years Ekta Niketan has established itself as the only and ultimate tuberculosis (TB) health centre in the region, with a highly competent and committed team of health workers, para medics, lab technicians and doctors.

So how is Ekta Niketan different?    

The corridor beyond the flowers and the trees leads to the modest mud hospital with a laboratory, open-air and enclosed clinics, and stone platforms for people to sit and wait. Some choose to sit outside under a huge tree, while little clumps of trees surround the health centre. The trees with different exotic names, many laden with fruits, planted by locals and doctors, have grown tall and big. The entire structure has been constructed by the Santhals with local material and is a labour of love and gift to their own community as also to the people from distant places who come here for TB treatment. Mostly very poor, they are unable to afford proper medical care, often fleeced and cheated by private clinics and quacks, thereby exacerbating their illness, even leading to premature deaths.

COVID Response Watch LogoIn the official map of the area, the health centre is clearly marked out. It reflects the popular and administrative recognition and respect given to this unique non-profit health care effort run by a voluntary and collective initiative. So much so, the local and federal authorities in the state government are providing free TB medicines to the health centre and conducting special diagnostic tests for the Ekta Niketan patients.

According to a document written by Dr Manan Ganguli, who is a catalyst behind the health centre and a key figure behind its visionary work, Fourth World Action, a UK-registered charity, supports the planning, skills, improvement of health workers, and overheads for this project. Friends, doctors and individuals pitch in, while the centre refuses any institutionalized funding from any source.

The Ekta Niketan is based on the principle of “in the community, for the community, by the community” with support from a committed team of doctors, offering advice, actively involved, or remotely overseeing the treatment, with trained Santhal paramedics and technicians. Health is seen by them a social, economic and holistic project, and there is meticulous documentation of the local demographics, economic conditions, migration etc. The health centre lays emphasis on addressing the social, political, economic and public health issues that lead to a high rate of infections and mortality among TB patients, who are unable to access immediate or long-term medical treatment, even as many of them face acute malnourishment.

1 1Most communities who reach out to the health centre survive on meager annual paddy harvests, dependent on rain. They supplement their daily subsistence by working in neighbourhood towns or far away cities, in the brick kilns, as unskilled construction workers or skilled mistris, loaders and daily wagers; also, building roads, in mines and factories, construction sites. Many of them travel in congested buses, live in cramped, small rooms in ghettoized areas and often in unhygienic conditions, without healthy nourishment.

Jharkhand might be rich in natural resources and minerals, but the Adivasis who live here continue to survive with great difficulty. During the prolonged pandemic and especially during the phases of lockdown or partial lockdown, their economic distress had increased manifold. People had no work, no money, no sustenance. It was a hard phase, and the aftermath is still visible in their lives.

According to the ‘TB and Poverty’ report prepared by Dr Ganguli in early 2021,” Negligence leading to a person’s death constitutes a crime. This document questions whether the contraction of tuberculosis by poorly nourished people in marginalized communities with no choice but to breathe in toxic dusts and fumes from mines and industries springing up next to their houses, and by  young, unskilled migrant workers forced to live in cramped conditions near their places, constitutes such a crime; whether exorbitant medical fees, unnecessary tests and medicines charged by doctors in private clinics, (followed by) reference to government TB centres for standard treatment free of charge, and, whether causing delays in initiating standard anti-TB treatment that leads to drug resistance — amounts to criminal negligence.”

The report reiterates that “the core of stopping the spread of TB and preventing deaths lies in “the need to protect the human rights of some of the most vulnerable people in our society”. It is estimated that in 2019 about 436,000 TB patients were recorded in India, not including cases among those who were HIV Positive. Due to Covid, the entire process of identification has slowed down and there is a strong possibility that cases must have risen disproportionately since the summer of 2020.

3 1According to the WHO, shared on the Human Rights Day in 2020, “Tuberculosis remains of the world’s deadliest infectious killers. It is deeply rooted in populations where human rights and dignity are limited. While anyone can fall ill with TB, the disease thrives on the most vulnerable – the marginalized, discriminated against populations, and people living in poverty.”

According Dr Soumya Swaminathan, former Director-General, Indian Council of Medical Research, quoted in the report, “Malnutrition (low body weight) is responsible for 50 per cent of TB in India and also leads to higher death rate, because of the low capacity of the body to mount an immune response. Reports from tribal areas of our country show that the average body weight of men and women with TB is 30-35 kg! Prevalence rates of TB are directly correlated with the social economic status…”

Clearly, the number of TB patients reaching out to Ekta Niketan from distant places and nearby areas, has been increasing. The number rose from 148 in 2019 to 256 in 2020. Of these, 46 were migrant workers and 48 per cent, were young – between 18 and 30 years. About 25 new patients start treatment at the centre each month. There was a sharp dip in the number of patients in April 2020. This was basically due to the pandemic and lockdown when patients could not reach the health centre.

Ekta Niketan stands out as a different health centre because of various reasons. Despite its modest structure and staff, it reaches out to a large area without restricting patients to a geographical boundary. It provides diagnostic and treatment services to TB patients, through a group of trained villagers “whose profile resemble those of the patients”.

Families and patients travel long distances to the centre and often stay overnight in nearby villages. The health workers not only diagnose patients but also explain the reasons and need to take the provided medicines, explaining the good practices in preventing the further spread of TB, and the kind of daily food and nourishment to be taken. Indeed, there is a deep trust established between the health staff and the patients, a highlight of the centre’s marked difference in treatment, and a crucial thread in community participation.

So much so, many patients who have been cured, keep coming by, again and again, and maintain close social relations with the staff and the centre. Many of them have become part of the health care process and actively help the centre, “while raising awareness within their own communities of good practices, transporting patients, sputum samples for microscopy and/or collecting medicines on behalf of TB patients unable to travel”.

Needless to say, there are always specialized and professional doctors who oversee the treatment or are directly involved with the patients physically. The health workers are always in consultation with experienced medical doctors, in person or remotely, and use online video diagnosis to support community-based TB initiatives in cases of ‘distant treatment’.

Indeed, due to the immense respect it has achieved over the years, the Ekta Niketan health workers were issued special travel permits by the administration during the pandemic and the lockdown, so as to visit patients. ‘Alert India’ representatives continued to deliver medicines to the TB center despite the lockdown.

While it remains a voluntary and community initiative, the Ekta Niketan now receives support from India’s National TB Elimination Programme (NTEP). Alert India backs the voluntary initiative.

“This means our TB patients can receive treatment free of charge while their sputum samples are examined at the nearest town’s government hospital for indications of drug-resistant mutations. Previously we were only able to distribute anti-TB medicines at subsidized prices, while drug-resistance testing was beyond our means,” says the Ekta Niketan report of March 2021, ‘TB and Poverty’.

In the ‘Final Word’, the report says, “Ekta Niketan is not perfect but is genuine. While building skills, it is very much rooted in its community… To eliminate TB, we need to build a society that takes care of everyone, a society that respects everyone equally. This report reiterates that.”

On the mud wall of one small enclosure in the health centre is written in bold: ‘Som, Budh, Shani’. This means the patients should come on Monday, Wednesday and Saturday. While Sunita and Tikla, trained, diligent and earnest Santhal paramedics are at their job early in the morning, listening patiently to patients and taking notes, while giving advice on what to eat and how to overcome malnourishment, old patients drop by for a chat, or, as a gesture of solidarity.

The entire community of Santhals look up to Ekta Niketan with great pride and joy. In this open-to-sky courtyard of a clinic held in sunshine, there is deep faith, compassion and humanism, even while the best health care is being provided to tuberculosis patients in a humble health centre run by the Santhals themselves.

Certainly, if this is not a role model for the rural and Adivasi interiors of a vast country like India, with almost a non-existent health structure at the micro level, what else can be?

Amit Sengupta is Executive Editor, Hardnews and a columnist, currently based in Kolkata

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