Men in this village die young.
The last death Munda Dhowra witnessed was in the first week of November, about a week before I visit the grieving family. Ramesh, 38, died of severe cough, fever and breathlessness one night, leaving behind a young wife, a widowed mother and three children below 10 years of age.

Ramesh had been taking treatment for tuberculosis, a form of respiratory disorder caused by bacterium Mycobacterium, from a private practitioner near his hamlet. He had been suffering for seven months before his lungs gave in. “He had no faith in government hospitals,” says his mother Shyampyari, her eyes tired of crying, justifying her son’s decision to consult private medical practitioners to avoid unnecessary referrals at public hospitals. 

Ramesh’s 30-year-old younger brother Balram leans on a wall in the verandah of the house where the entire family has gathered. His face is expressionless as the members draw similarities between his and his late brother’s illnesses. Balram’s weight has been constantly dropping, his body temperature goes up every evening and the cough is persistent. Asked if he is on any treatment, he gives a vacant look for a while, and finally answers, “I have TB.”

Like his brother, Balram has been working in ceramic brick manufacturing factories that line the streets about a kilometre from this village in Nirsa block of Dhanbad district of Jharkhand. The thick air around the factories engulfs the surrounding villages, including Munda Dhowra which is only two minutes’ walk from the main road, an offshoot touching the national highway 2 that links Delhi and Kolkata. Since there are no other jobs, young men start working in these factories as soon as they turn 15. They breathe in the dust throughout the day. Factory contractors do provide masks, but they are of such poor quality that workers are suffocated in no time, so they prefer to discard them.

When I visit the area, it’s time for the Diwali break. The factories have shut their machines and the dust is less than usual. Most workers are at home in Munda Dhowra. But the hamlet is in no celebration mood. No colourful frills hang on the walls. Small houses separated by a common wall dot the village. Women wash clothes and bathe their children at the village well under the early afternoon sun. Beyond clogged drains, small balls of coal residue are put out to dry, which will be used to light the chulhas – a reminder that Nirsa lies in the coal mining belt of Dhanbad.

Balram is on TB medication for a year after a private doctor confirmed it through an x-ray and a blood test (banned by the union government since 2012). His condition has not improved, yet he would not go to a government hospital where he can get free, regulated treatment under the revised national tuberculosis control programme (RNTCP).

It has also never occurred to him  (nor has any doctor told him) that he could be suffering from a respiratory ailment other than TB that he must have acquired at his work place. As most respiratory illnesses clubbed under the umbrella of pneumoconiosis show common symptoms, the patients with symptoms similar to TB could be suffering from any of those diseases. For example, silicosis: many of the experts I spoke with in Jharkhand and later in Delhi strongly suspect that silicosis, caught from inhaling silica dust from the ceramic factories, is killing people in the area. Unlike TB, silicosis is not communicable, but it would put culpability on the local industry apart from health authorities. It also happens to be incurable. Local health authorities have staunchly refused to take any notice of the deaths, forget the diagnosis. These deaths remain unrecorded in public health records. (More on the ambiguity of TB/silicosis will come up later in this report.)

“I will die if I go to a public hospital,” Balram echoes his brother’s disbelief. “And will you survive with private treatment? Look what happened to your brother,” jibes Shobha Devi, accredited social health activist (ASHA) of the village. Besides the reproductive and child health-related work under the national health mission (NHM), ASHAs, who are mostly locals, are also tasked with identifying TB cases.

Since men from Munda Dhowra work in ceramic factories they come in contact with silica dust which is a proven cause of silicosis. But they have never been tested for it or any other respiratory illnesses. Those who approached private doctors have been put on TB medication, which will not cure silicosis.

Despite a clear linkage of the respiratory illnesses to their occupation, the villagers of Munda Dhowra believe that it is TB that is killing people there. The doctors in the district also admit that Nirsa is a hotbed for TB. “Coal dust is a stimulant of TB and it is prevalent in this region because of coal mines. Malnutrition and alcoholism are also high here, destroying [a person’s] immunity,” says Ela Roy, medical officer, Nirsa community health centre (CHC).

It is difficult to arrive at the death toll – let alone fix the cause – because they don’t find the place in official record. We have to depend on anecdotal evidence. For example, elders like Shyampyari in the village have seen people die in the prime of their lives. She sometimes wonders how she has survived this long. “Rupaye mein 12 ana TB hai,” she says, indicating three quarters of the deaths are due to TB. “Every house has seen TB deaths,” Shyampyari waves her hand in indifference. “My mother-in-law, father-in-law and brother-in-law all died of this disease.”

If Shyampyari is right, the government’s fight against TB has failed to cover the full population. In 2006, the DOTS programme reached all districts of the country. It has, however, failed to reach many families in Nirsa yet. The block saw 135 TB cases and six deaths between January and October. In October alone, 13 TB cases were detected of which two are drug resistant, says Sachin Kumar, TB health visitor, Nirsa CHC. Dhanbad had 2,539 patients registered under the RNTCP last year.

But this data is only of the people who approach the government DOTS centre for treatment. These records go up to the district, state and to the centre database. The villagers of Munda Dhowra contend that these numbers are too low. According to them, there are many more patients who take treatment from private doctors and that is why they never find a mention in the government records. 

In 2012, after the news of first few totally drug resistant TB cases broke from Mumbai, the health ministry declared TB as a notifiable disease, which means that doctors treating TB have to inform the government about the cases. But the implementation of this order goes unmonitored. “There is no punitive action for doctors who do not report TB cases to the government,” says Rakesh Dayal, state TB officer, Jharkhand.

Villagers say no health official had visited them for detection of TB or any other respiratory ailment. This is so inspite of their admission that the district is prone to TB and other respiratory disorders. “The area around Nirsa and Jharia has high incidence of TB. This region has a lot of dust and it is unhygienic. Coal mining is also prevalent here. In Dhanbad currently there are 21 MDR [multi-drug-resistant] TB and two XDR-TB [Extremely drug-resistant TB] cases. One of the XDR-TB patients has HIV also,” says Jayant Kumar, district TB officer, Dhanbad. XDR-TB cases are highly drug-resistant and are incurable even with the second-line TB drugs.

State denial
The district administration admits the vulnerability of the locals to respiratory disorders. However, the state TB department is refuting to take note of the deaths in Munda Dhowra and the neighbouring villages. “How do you know it’s TB?” asks Dayal when approached after a visit to Nirsa. “It could be anything. Did you get the patients tested?” he asks.

Coal dust causes pneumoconiosis which is often misdiagnosed as TB, Dayal, who is also in-charge of occupational diseases in the state, explains. “Silicosis can also be a co-infection with TB and can only be diagnosed post-mortem.”

Dayal adds that  following reports of a ‘TB death’ in Munda Dhowra recently, he sent a team to the village to investigate but found the information to be false. “The team went door-to-door and collected samples of sputum from suspected cases. They found only five TB cases in the village,” he says. The report has been sent to the health department in Ranchi for further action. 

Villagers, meanwhile, have a different version of the story. “One officer came and asked the ASHA workers to take all those people who were coughing and had fever to the CHC to get their sputum tested. No one knows whether any tests were ultimately conducted or not,” said one of the villagers who did not wish to be named.

Notably, none of the villagers were tested for any other respiratory ailment, especially silicosis.

Diet and immunity
Before Ramesh died, one of his neighbours had suffered the tragedy. In August, Lakshmi lost her 50-year-old husband Nirmal to a respiratory disease, which, the family believes, was TB. Her 24-year-old son, Sanjay, is now suffering from similar symptoms and she fears for his life. “He drinks all day. He is never at home, how will he take his medicines on time?” she worries. Sanjay, who is also taking treatment from a private doctor, stumbles and settles on the floor next to his mother. With a placid smile on his face, he admits to his carelessness in following the treatment; his bloodshot eyes rarely blinking. Sanjay took medicines for a month and then stopped, says his younger brother Vijay.

The ASHAs start accusing him of his spoilt habits. Alcohol will kill him, they say. “How will the medicines work when he drinks so much?” one of them wonders. Most of the men in the village are addicted to the local brew available here, explains Maya, whose husband is one among them. “Alcohol is the reason they get TB so easily,” says Shobha.

In a parallel lane, Sanjay’s friend Dharmendra, in his early 30s, is the third in his family to be on TB medication. His father took TB medicines for three years but couldn’t survive. Dharmendra’s elder brother met with the same fate in 2013 after a prolonged fight with the disease. This is the second time the disease has caught Dharmendra; he had it first when he was 15. But he had stopped medication after a month. This time, he is enrolled at the Nirsa DOTS centre.

Unlike his brother (a photo of his taken just before the funeral hangs on the wall next to the idols), Dharmendra has quit work. “My brother used to go to work even though he was sick. There would have been no money in the house otherwise,” says Dharmendra, who used to earn '4,000 a month till recently by working in the ceramic factories and fed a family of his five children, wife, mother, sister and his brother’s wife and children. The women of the house do menial jobs in the village to make both ends meet. “We borrow food from neighbours sometimes,” adds Mona, Dharmedra’s sister.

“When there is food in the house, there are no medicines; when there are medicines in the house then there is no food,” Dharmendra laughs a sad laughter. He remembers the time his brother was alive and was taking treatment from a private doctor. His medicines had to be bought out-of-pocket. Even though Dharmendra’s medicines come free in a white box from the government, the supply of food in the house remains meagre.

Rakesh, Dharmendra’s friend in the vicinity, is also on TB medication from a private practitioner. His name also finds no mention in the ASHAs’ records. He spends his days roaming in the village in an inebriated state, and would not talk to a journalist, I was told. “Rakesh is somewhat well-off, so he will never go to a government hospital,” Dharmendra explains. 

TB it is, fear villagers
Sanjay, Ramesh, Balram, Dharmendra and his late father and brother are cheap, unregulated labour for factories. The ceramic bricks these frail men produce are fire resistant and are used by the steel and mining companies which are in abundance in Jharkhand’s mineral rich land.

Big metallic gates of one of the biggest factories are heavily guarded. The guard room stores sharp spears besides keys and logbooks. Big, clear words painted in white on a wooden board tell us in Hindi and in English that the factory follows the law of the land and does not employ children below the age of 14. The visit to the factory is not permitted beyond this board.

Dharmendra is sure his long-term work in ceramic factories gave him the disease. His father and brother did the same work. Vijay and Balram, who also work in factories, are also convinced that the amount of dust they inhale each day will bring their end prematurely. “Jitna khana nahi khate hain, utna dhool khate hain (The amount of dust I inhale is more than that of food I take),” says Vijay.

Meanwhile, experts in the state raise doubts whether it is TB or some other respiratory ailment that these young men are suffering from. “As the first point of contact for many people are private doctors, there is a very high chance that TB is over- or under-diagnosed,” explains Dr A Mitra, DOTS-Plus site coordinator, Ranchi.

Mitra works at the lone TB sanatorium in the state, in Itki, located about 30 km from Ranchi. He says that 203 out of per one lakh population visit the sanatorium. “Out of these cases, on average 75 are new sputum positive cases [which means diagnosed with TB for the first time], 75 are new sputum negative cases [those who test negative for TB], 38 are retreatment cases [which means they have taken treatment before and will now be put on DOTS-Plus] and the remaining 15 are extra-pulmonary cases. The 75 positive TB cases are put on TB treatment,” he says.

Importantly, the 75 TB negative patients are left undiagnosed though they are suffering from some or the other respiratory disease, which could be silicosis too.

It could be silicosis
The national human rights commission (NHRC), which is monitoring cases of silicosis in the country for compensation, notes that silica particles are released in the air with the dust created by cutting, crushing, chipping, grinding, drilling, blasting or mining. All those engaged in the manufacture of ceramics, glass and abrasive powders are susceptible to silica dust and its long-term inhalation causes silicosis.

If the killer is TB, not silicosis, it is still a big failure of public health system

People of Munda Dhowra blame TB for frequent deaths in the village, but do not go to the government hospital. In private clinics, there is little assurance of continuous and effective treatment – not to speak of the correct diagnosis to begin with.

TB is a very common killer in India, claiming two lives every three minutes. In 2012, 2.3 million were suffering from TB in India – which was the highest number across the world (nearly a quarter of the global figure of 8.6 million cases), according to the 2014 annual TB report of the health ministry.

In case TB is indeed the killer, it would be for the accredited social health activist, or ASHA, to ensure that patients receive the ‘directly observed treatment, short course’ (DOTS) treatment from a government centre. One DOTS centre is set up in the country for every one lakh population.

Under the treatment protocol, each patient is given a separate drug box and he or she has to take medicines in front of a health professional to ensure compliance. All new (or first time acquired) TB cases are given first-line drugs three times a week for six months. Patients who have undergone DOTS treatment (implemented through the revised national tuberculosis control programme, RNTCP) but have not recovered or have acquired the disease the second time are put on second-line TB antibiotics or DOTS-Plus after their sputum is tested for resistance against TB drugs. These cases are considered multi-drug-resistant (MDR) and their medication, which includes injections as well, continues for two years.

Though the government has launched disease-specific initiatives that are focused on TB, HIV and so on, there is no initiative or any ‘vertical’ programme for a whole range of occupational diseases (including silicosis). Doctors in health centres have to prescribe relevant medical interventions for diagnosing occupational health diseases after delving into the work history of the patients and the treatment follows.

Munda Dhowra’s ASHAs, Shobha and Jaya Devi, have only six TB cases in their records. Ramesh and Balram – whether they suffer(ed) from TB or silicosis – are two of the many patients who do not figure in them. Ramesh’s ten-year-old son who coughs all night and has become visibly weak over months may be the third. The ASHAs’ defence is that the families never inform them of the illness and visit private doctors on their own.

“Only 50 percent of TB patients visit the government health centres for treatment. The cure rate of these cases is above 90 percent,” says Dr KK Chopra, director, New Delhi TB Centre. “But the problem is the remaining 50 percent that the programme [RNTCP] is not able to cover.” He explains that the social stigma attached with the disease is a reason why people stay away from TB centres. Chopra has observed over decades of his career that poor families prefer to go to private health clinics in the neighbourhood where they receive symptomatic treatment. “They have faith in those doctors. The moment fever is cured with the first few doses of TB medicine, they think they are cured and stop taking medicines,” he explains.

Under the RNTCP, if the patient does not take the TB medicine, the health worker has to visit his or her home and ensure that the medicine is consumed. These default visits are missing in the private treatment. A private doctor cannot track each patient. “He or she will prescribe medicines but will never know whether the patient is continuing the medicines for six months or not,” says Chopra.

A plethora of literature on TB has shown that irrational and irregular medication for the disease increases drug resistance in TB which can be fatal. All TB drugs – including the first- and second-line – are available over the counter in pharmacies and private hospitals across the country for a dose of '10 per day. MDR-TB drugs are available for '300 per day. “Unfortunately, the government has been unable to control over-the-counter sales of TB drugs,” says Chopra.

Silicosis is caused by inhaling the silica dust continuously for many years. It is one of the conditions where TB can be a co-infection. “All workers who inhale silica dust are not going to get silicosis and all silicosis patients will not develop TB as a co-infection,” says Chopra.

Samit Kumar Carr, secretary general, Occupational Safety and Health Association of Jharkhand (OSHAJ), a non-profit organisation, explains that the disease the workers are suffering from in Nirsa may be silicosis and not TB. Carr has been working closely with the NHRC for decades on silicosis and has found Nirsa-like cases in Jamshedpur district, another mining destination of Jharkhand.

Also, Nirsa shares its borders with West Bengal where suspected silicosis cases among those who had worked in these factories have come to light. Voluntary organisations over there are studying these cases.

The International Labour Organisation (ILO), Indian Council of Medical Research (ICMR) and National Institute of Occupational Health (NIOH) have all concluded that wherever silica dust is present, there is a high chance of people suffering from silicosis.

The studies have also concluded that silicosis is a serious health hazard not only for those working in hazardous occupations but also for people around. Silica particles, which can only be seen with a microscope, are light and can travel long distances in the air.

If there is a clear cause-and-effect relationship between silica and silicosis, then why are the cases in Munda Dhowra not taken up for diagnosis?

“What the eyes don’t see, the mind refuses to admit,” Mitra sums up with a smile. “For silicosis, only post-mortem diagnosis is possible,” he says, offering the official line.

The sputum collected every day from the patients who come to the out-patient department (OPD) is smeared on slides and washed with a solution before it is put under a microscope for detecting TB bacteria at Itki (the only designated microscopy centre in Jharkhand). The solution clears all non-TB bacteria and foreign particles, wiping off any possible trace of silicosis.

Could the estimated 75 sputum negative cases that reach Itki be silicosis?

“The sputum negative cases could be suffering from any respiratory illness like asthma, bronchitis, pneumonia. These cases can be very early stage of TB and could be silicosis as well,” says KK Chopra, director, New Delhi TB centre. Sputum negative patients are given antibiotics for ten days followed by an x-ray, he adds.

Why silicosis goes unacknowledged
“There is enough knowledge and scientific research on what causes silicosis. The government knows what triggers it, yet it denies its presence,” stresses advocate Divya Jyoti Jaipuriar from the Human Rights Law Network, a Delhi-based collective of lawyers. Jharkhand currently has no silicosis case recorded from Dhanbad.

NHRC’s own investigations into silicosis in 2011 found “umpteen numbers of cases in the country, and that too of poor labourers working in the unorganised sector. A number of them had lost their lives following their protracted illness.” The NHRC report, submitted to parliament, adds that the number of persons dying of silicosis is large but there are no statistics available for its deaths.

“NHRC receives complaints [on silicosis] from a lot of states,” admits a source at the right commission.

Since silicosis is an occupational health hazard, if a person is diagnosed with it, the case has to be referred to the state labour department which has to ensure that medical relief is provided to those suffering from it. Compensation is to be given to families of the deceased as per the Factories Act, 1948, the Mines Act, 1952 and a few others. A supreme court interim order of 2009 in a writ petition by PRASAR, a non-profit organisation in Delhi, also directs the states to ensure prevention of silicosis and compensation of '3 lakh to the family of the deceased. The apex court raised compensation to '4 lakh in 2014.

“A simple letter by the workers, stating that they are suffering from ailments due to their occupations, along with details of the factory where they work, to the labour department is enough to bring it on the record of the authorities,” explains SA Azad, founder of PRASAR, who has been working on silicosis in Delhi since 1999. The state is liable to take action based on these written complaints. He adds that the workers are not aware of their rights and that is why they never approach the factory authorities for diagnosis and treatment.

However, the process is not as simple as it is on paper. “When we send applications to the factories, we find that the workers are not on their payrolls,” adds the source in NHRC. “State governments also want to sidetrack from the issue that is why they say that the patient is suffering from TB and not silicosis. Doctors also hesitate in diagnosing the disease as silicosis since they are under a lot of pressure from the government,” the source adds.

If diagnosed with an occupational illness, the factory has to pay for the  treatment and also give full wages to the person, explains Jaipuriar. “The factories try to evade the law by not putting workers on muster rolls and by hiring them on ad-hoc basis. Workers are not registered under the Employees State Insurance Corporation (ESIC) as well and if they fall ill, they are not entitled to state medical insurance. In most cases it is found that factory inspectors are hand in glove with the management which leads to widespread corruption and no benefits are provided to the labourers,” he says.

Certified surgeons under the factories have to examine and certify if the workers are suffering from silicosis or any other occupational disease. “Appointing the surgeons in every district is not possible, even at the state level the appointments are few,” adds the NHRC source.

The NHRC has suggested amendments in the laws to ease prevention of silicosis and compensation for its patients. As per the current system, if a person suffering from an occupational disease dies, the death should be notified to the ESIC and post-mortem conducted to ascertain the cause of death. The NHRC says poor families of labourers find it difficult to follow such procedures and these should be changed.

The Jharkhand government formulated a state action plan for prevention and mitigation of silicosis in 2012 but added a clause that the disease can only be diagnosed by post-mortem. Civil society groups in Jharkhand are demanding an amendment to the plan. Meanwhile, the NHRC has no information about such a move by the Jharkhand government.

One of the ways to establish how widespread silicosis or other respiratory illnesses in the region is to do a ‘death audit’, as is done in the case of maternal deaths, explains Jaipuriar. “In maternal death audits, usually the deceased woman’s family members are asked about her illnesses, symptoms and treatment history. Families usually have prescriptions and other medical investigation reports which are helpful in concluding the exact cause of death. A similar practice can be followed for TB or silicosis deaths. One can tell which medicines the person was taking, for how long and from where,” he says.

Which respiratory ailments people in Munda Dhowra and in other villages of Nirsa are dying of can only be established after those suffering from TB-like symptoms are clinically tested. Till then, in Nisra and elsewhere, more and more people, mostly young bread winners of their families, will continue to die young.

The names of all the people suffering from TB or other respiratory disease have been changed to protect their identity.