Along a 20 km stretch on the Jaipur-Agra highway in Rajasthan is a cluster of factories where sandstone is carved into garden lamps, railings, screens and gazebos. Starting at Sikandra village in Dausa district are about 900 factories – or “stalls”, in local parlance – that employ nearly 10,000 workers.

Forty three-year-old Hariom Saini started working at these stone stalls more than two decades ago. For all these years he has been inhaling the fine silica dust that gusts into his face every time he pounds sandstone with a chisel. The dust has now scarred his lungs enough to cause an incurable illness whose name he learnt only recently but finds it hard to pronounce – silicosis.

Saini spent at least two years trying to find out what exactly was wrong with him. He would frequently feel short of breath, have spells of uncontrollable coughing and would find it hard to climb stairs. Several doctors he saw were unable to diagnose his ailment. At least two doctors told him he has silicosis along with tuberculosis. He followed their prescribed treatments for a couple of months and discontinued his medicines once he felt slightly better.

Treating silicosis involves relieving symptoms such as shortness of breath, chest pain, fatigue, fever and severe cough for as long as the patient lives.

Since July last year, Saini has been traveling the 90 km from his village in Dausa to Jaipur every fortnight for treatment by a chest physician who, for months, did not ask about his occupation or explain his diagnosis.

But one October morning, Saini asked the doctor firmly, “Bimari kya hai?” What disease do I have?

“You don’t know what your problem is?” the doctor said. “You had tuberculosis. As much as 40 percent of your lung is dysfunctional.”

“I have been working in the stone industry for 25 years,” said Saini, who has seen other stone cutters with the same symptoms.

“We’ll cure your tuberculosis and will clear the dust that has deposited in your lungs,” the doctor responded.

However, the doctor insisted that there was no radiological evidence of silicosis, contradicting his earlier explanation of “dust” that he promised to remove from his patient’s lungs.

Hariom Saini at a stone-cutting factory in Dausa, Rajasthan. (Photo: Shivam Saini)

Prescription in hand, Saini walked out of the clinic and headed to a drug store. Every month, he spends close to Rs 5,000 on medicines, doctor’s fee and round trips between his village and Jaipur – almost half his monthly income.

Still uncertain about his condition, Saini decided to seek a second opinion from a doctor at a private clinic who had treated him in 2015. “The minute silica dust particles have deposited in the lungs,” the doctor said. “This is irreversible.”

The doctor recommended that Saini leave stone-cutting work to prevent further damage to his lungs.

“What else can I do to support my family?” Saini wondered.

The state steps in

Like Saini, there are “several thousands” of silicosis patients in Rajasthan, according to a 2014 report by the Rajasthan State Human Rights Commission. It is difficult to arrive at more precise estimates since there is lack of official data and the attempts to detect the disease in the local population are very recent.

In 2013, the Rajasthan government started providing Rs 100,000 as compensation to people diagnosed with silicosis by a team of doctors – called the pneumoconiosis board – appointed by the government. When such “certified” patients die, their families receive Rs 300,000. The number of “certified” silicosis patients across Rajasthan’s 33 districts stands at a little more than 8,000. In Dausa district alone, about 700 silicosis patients have been “certified”.

Saini qualified for relief only in December 2016. Till then his name did not figure on the list of those to be compensated because of an arbitrary procedure followed by the pneumoconiosis board. He was examined by the board the first time in November 2015 and then in October 2016. He was turned down on both occasions.

Every Thursday, a lung specialist, a general practitioner and a radiologist who make up the pneumoconiosis board in Dausa meet at the district tuberculosis centre to examine those applying for silicosis compensation and decide on their eligibility.

By 9am on an October morning, around 20 men lined up outside the five-room building that houses the centre. Each man carried a folder that contained a referral card by a doctor at a government-approved hospital, proof of identification, a chest X-ray as well as sputum and HIV test reports. Saini was the 19th patient to register that day.

Vimal Sharma, a tuberculosis official, was responsible for vetting the patients’ documents. “Don’t form a long line,” he roared at them before looking at a lengthening queue of craned heads and softening his voice. “Go, stand in the shade and wait your turn. I won’t send anyone back without registration.”

The men’s anxiety of being left out of the registration process is justified. The board is scheduled to meet every week but meetings are often cancelled due to the absence of any one of the three doctors. The previous week, the radiologist suffered a backache and called the meeting off. The general physician was expected to be unavailable the following week. Between February 2015 and October 2016, the board often met only twice and occasionally three times a month.

By 11:30am, the three doctors of the pneumoconiosis board arrive at the centre. “All three doctors in the team have their work cut out,” said board member Rameshwar Prasad Meena. “Being a general medicine physician, my job is to look at the patient’s physical appearance. I need to see whether a person looks healthy or diseased – it should be obvious. The chest physician focuses on the patient’s lung function. Then the radiologist looks at the X-ray.”

Meena’s emphasis on the patient’s appearance is important because it is a questionable criterion for deciding eligibility for silicosis compensation. Even though the government has not specified the extent of severity that a patient must experience before he can qualify for relief, it is not uncommon for the pneumoconiosis board to reject him simply for looking too healthy to be suffering a debilitating illness.

“Both times I approached the board [in 2015 and 2016], I was rejected,” said thirty three-year-old Rajesh Kumar Saini, who is not related to Hariom Saini. “The doctors said that going by my appearance, it did not seem I had much problem.” He carried medical reports from two well-known pulmonologists in Jaipur that state that he suffers from silicosis.

Men waiting to be screened and certified at the Dausa district tuberculosis centre. (Photo: Shivam Saini)

“Silicosis is an asymptomatic disease, until the onset of complicated silicosis,” said Prahlad Kumar Sishodiya, a doctor who serves as an occupational health consultant at the Rajasthan government’s Building and Other Construction Workers Welfare Board and is the former director of the National Institute of Miners’ Health.

“There may be no symptoms even though a chest x-ray may point to advanced silicosis.”

Sishodiya is critical about the vague approach to diagnosis of silicosis adopted by some doctors, like those on the pneumoconiosis board. “If someone doesn’t want to see something, they won’t,” he said.

“Yes” or “No”

At the tuberculosis center in Dausa, the three doctors scanned each patient’s X-ray and promptly gave a verdict – either “yes” or “no”. No matter the result, the patients were not handed back their documents and medical reports.

The crowd looked questioningly every time a patient emerged from the room.

Saini looked confused after his turn. “The doctors said my condition is restricted to only one side of the lung,” he said. “This is what they also told me the last time. I have been rejected again. But then they said they will see to it later.”

“I have been told to come after a year or two,” said another man in the crowd.

“Keep on grinding the stone for another year or two. Once your condition worsens, you will get the relief money,” joked a third.

The doctors screened 57 people in two hours and declared 23 eligible for compensation that day. Saini, who lingered around in the hopes of getting some clarity on his condition and compensation, asked Sharma, “The doctor said my condition is restricted to only one lung and that he would see me later.”

“Then you must come when both lungs have been affected,” said Sharma dismissively.

Tab tak tho khatam ho jayenge,” said Saini. I will have died by then.

At a screening session two months later, the board decided that he did indeed have silicosis and qualified for relief.

Unwilling and unqualified

Chronic exposure to silica increases the risk of a person getting a tuberculosis infection and also aggravates pre-existing pulmonary tuberculosis. Community medicine researchers have found that tuberculosis in silicosis patients often goes undiagnosed because coughing, wheezing, expectoration and vague chest pains are symptoms common to both diseases common to both diseases. But it is also not uncommon for doctors to misdiagnose cases of silicotuberculosis or silicosis as purely tuberculosis, said Sishodiya.

The more intractable problem, however, is with doctors knowingly refuse to acknowledge the evidence of silicosis. In a report Sishodiya authored on the incidence of silicosis in Karauli, a leading mining district in Rajasthan, he wrote, “Though some medical practitioners are aware of the respiratory diseases occurring among workers, they are mostly treated as cases of pulmonary tuberculosis.”

Sishodiya attributed doctors’ resistance in diagnosing silicosis to two factors. One, that although the law requires doctors to notify every case of silicosis to government authorities, many doctors are reluctant to exert themselves with the process of notification and there is little enforcement of the rule. The penalty for not reporting the disease is a mere Rs 50.

The other reason is the lack of training to enable doctors to identify silicosis. The International Labour Organisation has laid out guidelines to help doctors interpret chest X-rays to identify abnormalities that result from occupational lung diseases. There is, however, little awareness about such training in the country, says Sishodiya. Sishodiya is a B reader – a physician certified by the National Institute of Occupational Safety and Health in the United States to read chest X-rays for pneumoconiosis.

The Rajasthan State Human Rights Commission echoed similar concerns in a report. “The Pneumoconiosis Boards in the state do not have nor use these standard set of chest radiographs provided by ILO. It is not clear on what basis they reject a suspected case of silicosis/asbestosis, and why such rejection should be accepted unchallenged by a patient,” the commission said.

Death of a repairman

Thirty-year-old Kamlesh Rachoya was a repairman at a quartz-crushing plant in a village in Dausa who spent five years working with and inhaling silica sand particles used for making glass. Diagnosed with silico-tuberculosis in December 2015, Rachoya died of respiratory failure in May 2016. He was turned down for certification, and therefore compensation, by the pneumoconiosis board days before he died at a private hospital in Jaipur.

“I begged the doctors at the board that they should at least look at his condition, but they did not bother to walk up to the ambulance parked in the frontyard,” said Kamlesh’s maternal uncle Mahesh Tailor, who had accompanied his emaciated nephew to the district tuberculosis centre in Dausa. Rachoya’s family lives below the poverty line. Rachoya used to earn just enough to keep his children in a government school and contribute Rs 3,000 every month for household expenses. The family had hired an ambulance for Rs 1,500 to make the hour-long journey to see the pneumoconiosis board, since Rachoya’s worsening lung condition kept him tethered to a portable oxygen tank during his last days.

Kamlesh Rachoya's family. (Photo: Shivam Saini)

Tailor said that the board refused to consider Rachoya’s medical reports from leading private hospitals that stated that he suffered from silicotuberculosis. Although the certification of illness from the board would not have saved Rachoya, it could have helped his family.With Rachoya gone and no hopes of compensation, his wife has been trying to get a job as a local public health worker and his father, Ashok, puts in extra hours to keep the family’s low-paying tailoring business going.

Poor protection

Back at the many stone-cutting factories along the highway, some workers have been wearing cloth masks. These masks have been provided by factory managements after the Rajasthan government started tightening regulation of dust-emitting factories and mines, but they hardly offer protection against the minute particles. Many workers use white cotton scarves, although they doubt those will protect them either.

“The dust masks that are available locally are not useful,” says Sishodiya. “Nobody can use such a mask for eight hours every day. And you are asking them to use those for a full month.”

A man covers his face with a scarf as he carves stone at a Dausa factory. (Photo: Shivam Saini)

Most workers here belong to the Mali community and generations of men grew up knowing no other form of livelihood except stone carving.

“Our factory owner was a kid when I started working here,” said Saini. He got a role of supervisor at his factory after his bosses saw that he was unable to lift heavy loads, ran short of breath and coughed too much.

“Hariom keeps falling ill frequently,” whispered a driver at the factory. “He won’t be around for more than two or three years.”

This reporting project has been made possible partly by funding from New Venture Fund for Communications.