As many as 7,959 silicosis cases were detected in Rajasthan between January 2015 and February 2017, and in the same period, 449 people died of the disease in five districts.

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Jaipur: Basanti Saini, a 30-year-old widow in Sikandra, a small village in Rajasthan's Dausa district, wakes up every morning with breathlessness and has a lump above her breast. She lost her husband to silicosis in 2017 and has been diagnosed with the same. Every day, she goes to the very death hole that gave her the disease to earn a livelihood. She continues to work at the stone factory because she has three children to feed.

"Since my husband died, I have been trying to get the money I am entitled to from the relief fund. but despite submitting several applications and paying a huge sum to the agents, I have not received the money," Saini says, coughing as she speaks.

This is the story of every other household in the villages around Sikandra as stone carving is the main source of income for the residents.

Deendayal Saini, a 28-year-old worker from Bhindarwara village, has been suffering from persistent cough and breathlessness for a year. He has been a stone carver from nearly eight years and was also admitted to a hospital after being diagnosed with tuberculosis.

His colleague, 37-year-old Amarsingh Saini from Manpur, says "I have been doing stonework since 1997 and have been suffering from silicosis for the past five years."

He knows hundreds of people who suffer from silicosis, most of them between the ages of 26 and 35.

Breathless in Rajasthan

India has an enormous tuberculosis problem. According to the World Health Organisation, 2.79 million Indians contracted TB in 2017 — nearly a quarter of all the cases in the world — but only 1.8 million were notified; nearly a million cases are not notified and inadequately diagnosed and treated. This reflects in the Rajasthan government's Comptroller and Auditor General (CAG) report, which was tabled in the Assembly earlier this year.

Rajasthan has a high number of mine workers, with more than 1.65 million families working at stone quarries and mines for meagre wages. The CAG report states that 7,959 silicosis cases were detected in the state between January 2015 and February 2017, and in the same period, 449 people died of the disease in five districts. The report adds that there were 2,548 silicosis-inducing mining units in Rajasthan in 2017, but the exact number of mines is unknown as there are a large number of illegal units operational across the state.

It was towards end 2014 that the Rajasthan State Human Rights Commission prepared a special report on the state's mine workers suffering from silicosis and sent it to the Ministry of Labour and Employment with a direction to take action based on its recommendations. This report was forwarded to the state's Department of Mines and Geology (DMG) and the State Pollution Control Board for further action. The board had committed to carrying out periodic air quality checks near clusters of mines and quarries and had also sought the locations of such clusters from the DMG. But the matter has been at an impasse ever since as the DMG has yet to respond. The DMG had also said it would constitute flying squads to conduct inspections against errant mine owners, but no such teams were formed as of May 2017, the report said.

According to the labour laws in place, employers must assign a particular uniform and equipment to workers frequently exposed to silica dust.

"There is no cure for silicosis. For prevention, masks are a must for workers, and employers must provide equipment that use water while grinding stones to minimise the spread of silica dust," said Dr Devendra Saini, an assistant professor at Sawai Mansingh College.

Hansraj, a Sikandra-based factory owner, said: "We get stone grinders that use water as they prevent the release of dust and help it settle down quickly, but these haven't been too successful. They work for two-three days and burn out. I have to spend Rs 700 for maintenance every time. Even if we purchase grinders with a warranty, we get a replacement for the first mishap but nothing the second time onwards."

"Labourers are provided masks," he added. "From the government, there is a pension for widows, but not everyone gets it."

Silicosis has been an occupational hazard for decades, but misdiagnosis still remains a threat to its treatment.

Social activist Ranasen Gupta pointed out that silicosis is curable when detected at the first of its 10 stages, but any delay worsens the situation.

"It is also misdiagnosed as TB sometimes because of their similar symptoms and treated with medicines meant for TB, which ultimately don’t help. What’s even more incredible is that at the time of diagnosis at government hospitals, workers are not asked about their occupation history, which results in a delay from the doctors' board to certify silicosis as many still don’t know it's a certified disease," he explained, adding that there aren’t enough oxygen tanks in hospitals, except in Jodhpur, which leads to silicosis patients being discharged at the last stage of when they need it the most.

Complicated relief

The only slender line of state support these workers can hope for is the Silicosis Grant Disbursement, a scheme the state launched fully aware that it had no reliable estimates about the seriousness of the crisis. Through this scheme, the Government of Rajasthan has to compensate those diagnosed with silicosis while working, or the families of those who died due to the disease, with a cash grant of Rs 2 lakh (increased from Rs 1 lakh) and Rs 3 lakh, respectively. Predictably, the process of disbursement is complicated, slow and riddled with corruption.

The patient/family has to file an application to receive the compensation. The application goes through a number of levels of screening, starting from the Community Health Centre level, where a referral card is made for the patient, who then has to appear before the medical board for screening. After being approved, the application is passed on to the nodal officer and then the district collector, each of whom has to stamp it. This application is now considered 'registered' and eligible for funds.

According to information on the official website of the scheme, as many as 35,517 applications were registered till March 2019. However, only 8,255 cases have been certified, of which only 1,959 have received the funds. In addition to this, 10,284 applications have been rejected and 5,864 cases are pending at various levels.

Could more people have benefitted if the grant had more money? It's hard to say.

However, the grant had received no allocation from the Pradhan Mantri Khanij Kshetra Kalyan Yojana (Prime Minister’s Mining Area Development Programme), for which it is a perfect candidate. Since its implementation in 2015, mining districts have been allowed to tax all mining operations under their purview towards a fund meant to compensate the victims of these operations and improve their lives. But Rajasthan’s District Mineral Fund is apparently being used for a vague set of "roads, school building, school rooms and development of the village roads, mine roads".

"Patients need to apply on the website of the LDMS (Labour Department Management System, Government of Rajasthan). The entire process is online," said Aruna Sharma, labour officer at Jhunjhunu.

When asked about the delay in disbursements, she said, "The provision of compensation is entirely the government's lookout. We only help getting the cards made."

'Agents', or middlemen, have taken advantage of several residents because of the complicated procedure. They promise to get the money sanctioned but then dupe the patients and families after charging them a heavy fee.

"To avail the relief, one needs to submit their Aadhaar Card and Bhamashah Card, a state-based direct benefit transfer scheme under which health insurance and medical treatment facilities are provided to beneficiaries. Then, a form has to be filled and a card is given to the patient to avail the amount," a silicosis patient explained. "However, agents meddle in the process and ask for money to get this card made. Some doctors are also hand in glove with these agents and ask for as much as Rs 30,000 for the card. In Jaipur and other cities, agents ask for Rs 2,000 to Rs 5,000 fill the form online through the state government's e-mitra portal."

Another silicosis sufferer, Lakshminarayan, claimed to have been charged Rs 10,000 to Rs 15,000 from these agents, which he is in no condition to pay.

Bhagirath Saini, another patient from Manpur village, has lost all hope now. "I have been suffering from this disease for two years and have been running to government offices to claim aid. But in the absence of a fair system and because of agents, I fail every time. I feel hopeless now," he said.

Aid to silicosis patients had found a place in the 2018 Rajasthan Assembly election manifesto of the Indian National Congress. The party, which went on to win the polls, had promised to include labourers and workers suffering from silicosis in the disability category.

Furthermore, Mamta Bhupesh, state minister for women and child welfare had promised several facilities to silicosis patients and affected families. However, three months later, nothing has been done yet in this regard. Bhupesh did not respond to numerous attempts for a comment on the matter.

Congress leader and labour minister Tikaram Jully, when asked about the pitiable condition of silicosis-struck workers, said: "We were not aware the situation was this bad. Now that you are telling me, we will get to the bottom of it and try and find a way out. If labourers' families directly contact the ministry, we will make sure they don't get cheated of the assured compensation."

The author is a Jaipur-based freelance writer and a member of 101Reporters