Why lifesaving funds are not reaching Rajasthan’s silicosis patients

Shiv Lal remembers the exact date he accompanied his father to a silicosis registration camp in Dausa district, Rajasthan – January 7, 2021.

Lal was then 16 years old. He and his father travelled around 20 km from their home in Manpur village to reach the camp, held at a tuberculosis hospital. For over a year, his father had been ailing from silicosis, an incurable lung disease caused by the inhalation of silica dust particles. Like many others from the villages around, Lal and his father attended the camp organised by the state government to apply for a “silicosis card” that would certify that his father was suffering from the disease and was thus eligible for financial aid from the government.

But the reason why Shiv Lal remembers the day accurately is not because it was the first time they visited such a camp. It was because just hours after attending the camp, his father died.

The family’s personal tragedy was only compounded in the months that followed by bureaucratic sluggishness that they had to deal with. Under the Rajasthan government’s 2019 Policy of Pneumoconiosis, the family of a certified patient who dies is entitled to a payment of Rs 2.10 lakh, along with health, nutrition, and education benefits for children, as well as a separate pension for widows. (Pneumoconiosis is a group of lung diseases caused by the inhalation of dust in various occupations – silicosis is one such disease.)

Shiv Lal’s father was certified as a patient three months after his death. But more than two years since, the family has not received any payments or benefits.

Numerous other families in the region have suffered the same experience. According to a state government portal that lists a district-wise summary of cases registered and certified, funds distributed to silicosis patients and cases of silicosis deaths, out of over 2,200 registered cases of silicosis deaths, only 365 families, or 16.6%, have received aid.

The shortfall is even more stark in cases of patients who are living with the disease, who are entitled to a payment of Rs 3 lakh, along with a monthly pension to support treatment. Over 86,000 have registered as patients, but only 1,333, or 1.5% have received the aid.

Nikhil Dey, a social activist who has followed the status of silicosis cases in Rajasthan since 2016, described the state’s silicosis policy as “better than those in other states”. But the implementation of the policy remains poor, he added. He noted that there were around 5,000 cases that had been certified, but for which no compensation had been disbursed. “That’s 5,000 people on death row,” he said. “How can this not warrant attention?”

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Silicosis is an incurable lung disease caused by the inhalation of dust that contains silica crystals. These particles are found commonly in sandstone, quartz, slate, and building materials like clay bricks and tiles. Those who work in occupations associated with these materials – like mining and construction labour – are at high risk of contracting the disease.

Rajasthan has the highest number of mining leases in the country – more than 33,000, a majority for sandstone mines and quarries. In 2019-’20, Rajasthan reported a production of 274.50 lakh tonnes of sandstone, a mineral that puts workers at risk of silicosis.

Up to the late 2010s, clear data on the number of silicosis cases in Rajasthan was not available – according to Moolchand, an activist and social worker with Mazdoor Kisan Shakti Sangathan, this was because the disease was often misdiagnosed as pulmonary tuberculosis.

More focused attention was given to the problem from 2009 onwards as a result of sustained activism and published research on the prevalance of the disease in the state – that year, the National Human Rights commission detected 22 cases of deaths by silicosis in the state, and another 52 affected by it. Between 2012 and 2014, the commission detected over 800 cases and 57 deaths due to silicosis.

Shiv Lal’s father worked in the sandstone carving industry in Dausa’s Sikandra, a village neighbouring Manpur. Silicosis cases are common among those who live and work here, as a result of the industry, for which labourers are employed to drill and carve Rajasthan’s popular sandstone into household and decoration items, statues, pots, and even entire temples. The owner of a stone unit in Sikandra explained that very few units in Sikandra implemented “wet drilling”, a process mandated under the Metalliferous Mines Regulations, 1961, which uses water to suppress flying dust particles. He also noted that workers did not always wear masks or light towels over their noses and mouths to protect themselves from the particles.

“My father was the main earning member of the family, and after his death it has been very difficult for us,” said Shiv Lal, now 18, as we sat in front of a desert cooler in his relative’s house on a humid July afternoon. “I have had to stop my education, my mother stays sick often and we have had to take loans over the years to meet expenses.”

Following its enquiry, the human rights commission recommended to the state government that it make ex-gratia payments of Rs 1 lakh to patients and Rs 3 lakh to dependents of deceased.

But activists and affected persons noted that there were inconsistencies in the process. Most prominently, if an affected individual worked in a mine, they would have to approach the mining department, and would be entitled to a compensation of Rs 1 lakh; if they worked in the construction industry, or as carvers, they would have to approach the labour department, and were entitled to Rs 2 lakh as compensation. “So, around 2017, there were many dharnas to bring attention to the fact that the same disease is being treated differently by different departments,” Moolchand said. “The 2019 silicosis policy came out of this longstanding movement in the state by NGOs and activists.”

In the latter half of 2021, the state’s social justice and empowerment department, the nodal agency for the implementation of the policy, introduced an online portal on which a patient or their family could register themselves and track the status of their case’s certification and the disbursement of funds.

When Shiv Lal registered his father at the camp, the process had not shifted completely online.

When Lal logged into the portal after almost a year to check the status of his father’s posthumous aid, he found that the portal said, “No record has been found to prove the sickness” – he showed a screenshot of this message to Scroll.

Lal was surprised, because three months after his father’s death, the family had received a “silicosis card” issued by the same hospital in Dausa where they attended the camp, certifying that his father died of the illness.

After a year of chasing paperwork and government officials, he understood the problem. His family’s certification had been issued offline even as the process was shifting online – it had not automatically been registered online. Rather, the department had launched a second portal where those who had registered offline could shift to an online registration.

This July, Lal accessed this offline-to-online portal. “I uploaded the documents this July, but so far, there has been no update in the status,” Lal said. According to representatives of local NGOs that Scroll spoke with, many such cases await this conversion.

Many cases are also stuck for other reasons in the online portal – of the over 80,000 people registered, it lists the status of 16,000 cases as “on hold”, and of around 3,400 others as pending verification from medical officers, radiographers, and radiologists.

Dr PK Sishodiya, silicosis consultant with the directorate of specially abled persons, department of social justice and empowerment, told Scroll that the administration is finding ways to make this online process quicker – for instance, it is putting in place deadlines for each stage of the process.

However, they also face a major challenge when it comes to procuring funds from departments that are supposed to bear the expenses of the compensation.

One of the main contributors is the District Mineral Foundation Trust of each district. These are non-profit bodies that by law district administrations have to set up in mining-impacted districts – mine operators have to contribute funds to these bodies, which are to be used for the welfare of mining-impacted families. Funds are also contributed by the Building and Other Construction Workers welfare fund of the labour department, and corporates, under their corporate social responsibility programmes.

“We have to keep asking them again and again,” Sishodiya said. “For the last three months, we have not been able to disburse any aid to patients because of a lack of budget raised.”

As many patients and their families struggle to convert their offline registrations to online ones, another problem with the compensation programme has come to light – disparity in compensation sanctioned for those who applied for it before the 2019 policy was notified, and those who applied for it after.

Prior to 2019, the entire process was carried out offline. After patients registered, their applications would be scrutinised by a medical board of four doctors, which met once a month to decide which cases to certify as silicosis, and recommend for compensation.

This process was grindingly slow. “The waiting list for a case to be heard would be so long that we calculated that it would take three years for a patient’s case to be seen by the board,” Dey said. This, he said, changed when the new portal was launched as a part of the 2019 policy.

Under the new process, a patient first had to register themselves on the online portal. They were then to receive an SMS alert asking them to get a primary medical checkup at a specific registered community health centre near them – they would have to complete this checkup within 21 days of registration. If the checkup revealed that the patient could be suffering from silicosis, doctors at the centre would recommend that they undergo an X-ray scan, the results of which would then be sent to a radiologist from a list empanelled by the government, who could be from any district in the state.

The radiologist’s diagnoses would be sent back to the medical officer who carried out the primary health checkup – based on the radiologist’s opinion, this doctor would make a final determination of whether the patient suffered from silicosis. Accordingly, a final certificate was either approved or disapproved.

Under the 2019 policy, a patient whose application was approved received a uniform aid of Rs 3 lakh for treatment. In cases of death their families would be entitled to an additional Rs 2.1 lakh.

This has understandably upset those who applied for compensation before the new policy was announced, and who only received Rs 1 lakh or Rs 2 lakh. “We have been getting a lot of complaints from patients demanding equal financial aid pre and post the policy,” said Ashok Kumar, joint director of the directorate of specially abled persons. “We also believe that there should be equality.”

Kumar explained that the department had taken measures to resolve these complaints. “To ensure that everyone ultimately gets a total of Rs 5 Lakh, we have made the provision that if someone had received Rs 1 lakh prior to 2019, they will get Rs 4 lakh after death, and if someone received Rs 2 lakh earlier, they will be entitled to Rs 3 lakh after death,” he added.

But Ramavatar Saini, a silicosis patient from Sikandra argued that dispensing money for treatment – rather than after death – was crucial. Sitting on a large slab of sandstone in a stone unit, he and Babulal Saini, another worker who suffers from silicosis, listed the expenses that are usually incurred by silicosis-impacted families – medicines for treatment, regular checkups in civil hospitals, travel to larger cities like Bharatpur or Jaipur for treatment, and in the last stages, oxygen cylinders to assist breathing. “On an average, this can cost anywhere between Rs 7,000 and Rs 10,000 per month,” Babulal said.

Ramavatar and Babulal are former colleagues. Both began working in the stone unit in 1995. There, they carved designs onto stone using hammer and chisel, as well as small hand-held electrical devices known as grinders. Both methods release potentially lethal clouds of dust particles into the air.

Around 2012, Ramavatar started noticing that he would have difficulty in climbing stairs or walking short distances without panting. Upon getting a medical checkup in 2013, he was first misdiagnosed with tuberculosis. After he realised that the medication prescribed to him was not improving his condition, he got tested again, and in 2014, was diagnosed with silicosis.

Soon after, he left the job that caused the disease, and joined the Sikandra branch of the NGO, Dang Vikas Sanstha, as a community mobiliser, where his primary responsibility is to help silicosis-impacted families receive the financial aid they are due.

“When we began work here in 1995, 53 of us were present,” Ramavatar said, pausing to avoid getting breathless. “Today, just 4 of us are alive. The rest have all died due to silicosis.”

Ramavatar and Babulal applied for compensation through the offline process, and in 2016 received Rs 1 lakh from the government. “That amount did not even last a year,” he said. He and Babulal both also receive a monthly pension of Rs 1,200. For many patients, these sums are of little help – they rely on oxygen cylinders, and pay Rs 800 a day for two refills. More permanent solutions, such as an oxygen concentrator, are too expensive for affected families – they can only access them with the support of organisations like the Dang Vikas Sanstha, which has provided 14 concentrator in the last eight months to families with silicosis patients.

Ramavatar and Babulal have both applied to convert their offline registration to online ones – under the current rules, this will entitle their families to Rs 4 lakh in the event of their deaths. The proposals are pending. Ramavatar has also participated in the protest in Jaipur demanding disbursement of funds to patients and equal compensation for those who received lower payments under the offline system.

For some, the process of navigating offline and online applications and tracking them is too confusing and time consuming to attempt. Bachu Devi, who is 33 years old, lost her husband to silicosis four years ago, and applied to receive Rs 2 lakh upon his death. She received the silicosis card offline, but not the compensation – she then applied to convert the registration to an online one. But she is unfamiliar with the electronic process, and is letting her male family members take the lead on following the case, while she concentrates on earning an income to raise her four children. “My youngest son contracted tuberculosis, and his treatment required money,” she said. “I now do daily wage work to earn to support the children.”

Many in Dausa have not survived the wait to convert their offline certifications to online ones. “Since 2021 when we began facilitating the offline to online registration, 17 people have died without getting aid of any kind,” said Sonu Chaturvedi, a community mobiliser with Dang Vikas Sanstha, as we sat in their small two-room office amidst agricultural fields in Sikandra.

Multiple stone units operate along the road near the office, proudly displaying their finished artwork – intricately carved statues, window frames with jaali work, elephant figures and pot holders.

The offline to online process has been challenging for the administration too. For one, Kumar said, at the time the 2019 policy was implemented, some payments remained to be made for those who had applied previously. Some of these individuals also applied for certificates online, and thus possessed two separate certificates – many had not received compensation because of such administrative confusions. “All of this is complicating matters for us,” he said.

While patients who applied for compensation before 2019 are struggling to navigate the conversion to an online registration, challenges have emerged for applications made solely through the new process also.

On a Monday morning in mid-July, a dharna was underway at Jaipur’s Shahid Smarak. Under a tent, people from across the state had joined under the banners of different organisations to raise demands pertaining to a range of problems, from unemployment and illiteracy to the loss of common lands and agricultural crises. The dharna was in its eleventh day, and while protest songs played over the speakers, I spoke to Dharamraj, who is part of Aajeevika Bureau, which works with migrant labour in Rajasthan, Gujarat and Maharashtra.

He explained that in July this year, 15 silicosis patients of Banswara district had applied on the portal to register themselves. Within just two hours of registering, they all received an SMS that their applications had been rejected, though none of them had undergone a medical checkup.

“Soon after the incident we wrote to the joint secretary of the social justice and empowerment department about the incident,” Dharamraj said. The copy of the letter, accessed by Scroll, stated that the patients even went to the hospital assigned to them to undergo checkups to confirm that they suffered from the disease – but upon reaching, they were told that their applications had been rejected and that further processes could not be carried out. Notings on the letter to the joint secretary, which were shared with Ajeevika Bureau showed that the matter was referred to the district’s collector on the same day that it was received by the department. Scroll emailed the district collector to enquire about the status of the complaint – there had been no response at the time of publication.

In some cases, Dharamraj noted, “We have been seeing that people are not receiving any messages or calls to let them know that they should go for their test.” This, he explained, is a serious problem because of the rule that once they register, they have to visit a specific community health centre for a primary checkup within 21 days – if they do not undergo the checkup within this time, their application is placed “on hold” and is not processed further. According to the online portal, more than 16,000 cases are currently “on hold”.

The dormant cases are a problem for the administration as well. “If the patients do not report within the 21 days, it inflates the total number of pending cases for each district,” said Sishodiya from the department of social justice and empowerment. He clarified that even after the 21 days are over, a patient can reopen their case by visiting the doctor assigned to them, a detail of which only one of the two NGOs Scroll spoke with were aware. “Now, we have been discussing removing all such on-hold cases, if they have not been reopened within three months, to reduce the overall pendency rate,” he added.

Activists and patients explained that even those who do visit health centres for checkups often face hurdles. In Sikandra, Chaturvedi said that patients regularly report that they are sent back on the basis of a superficial diagnosis. “If a person happens to look slightly chubby or healthy, or they have climbed up stairs without much difficulty, they often send them back saying you cannot have silicosis,” he said. He added that it’s usually only in the severe and last phase of the illness, before death, that a patient visibly looks weak, or becomes bed-ridden. He noted that this type of superficial screening denies patients early and timely diagnosis, which could extend their lives.

“We are aware of this problem, and a lot of NGOs have communicated to us that primary health tests are not properly conducted,” Sishodiya said. “When we did special screening camps in rural areas in Rajasthan, we found that these were genuine complaints.”

Sishodiya noted that scheduling checkups was often a problem. “If, say, some doctors have only particular days of the week designated for silicosis detection, then scheduling the numerous appointments for them becomes a challenge,” he said.

Sishodiya added that they have also received complaints from radiologists about the high number of X-rays they have to analyse. “In Bharatpur district, we were told that one radiologist had over a thousand silicosis cases under him to investigate, so we redistributed them to radiologists in other districts,” he said. He added that he had encountered instances where when his department asked doctors to speed up investigations, doctors rejected cases without investigating them properly.

Nevertheless, he explained, the department is discussing the institution of a 14-day deadline for all radiologists to process the X-rays they receive.

Dey noted that there had also been cases “where applications were rejected without being examined including obvious cases of silicosis”. He explained that in response to complaints about this, in July, Sishodiya had examined X-rays of cases across four districts that had high rejection rates and, according to a letter he wrote to the health department, which Dey has seen, out of 269 rejected cases, “there were 100 patients whose X-rays showed that they had silicosis.”

When cases are stuck within this system, families seek alternative ways to support the treatment of family members. “That house there,” Babulal said, pointing to a field across from the stone unit he was working in. “They have had to sell all their land to be able to afford the medicines and treatment of a silicosis patient in their family.”

Ajeevika Bureau’s Dharamraj explained that the gap between official numbers and ground reality was starkly obvious to anyone working on the problem. “Take the case of Banswara district,” he told me, speaking loudly over the protest songs of the dharna in Jaipur. “Only two patients have received the money.” I opened up the portal on my phone to confirm this – indeed, of 328 patients registered, just two patients had received the aid.

He added, “I have seen many more than two people die of silicosis right in front of my eyes there in Banswara.”

In Jaipur, Ashok Kumar, the joint director of the directorate of specially abled persons noted that raising funds was a major problem when it came to dealing with silicosis cases. “This is why dealing with the pending cases is taking time,” he said.

While DMFTs are one of the major contributors to the silicosis fund, only registered mines contribute to the fund – the wide prevalence of illegal mining in Rajasthan means that in many districts, funds raised from DMFTs are not commiserate with mining activity in the region. “We see that districts from where we get many silicosis patients, oftentimes, the revenue generated under the DMFT is low because there are very few official mines,” Sishodiya said. “People work in the illegal mines and get infected.”

Many mines are also not registered with the ministry of labour and employment in Rajasthan – as of 2012, only 3,706 of the 30,000 mining leases in the state were registered with the ministry, according to responses to an RTI application filed in 2012 by the Mines and Labour Protection Campaign. This leaves such mines out of the purview of the ministry’s inspections, and the enforcement of provisions of the Mines Act, 1952.

Samit Sharma, secretary to the government in the department of social justice and empowerment, noted that in this context, it was crucial to take more stringent action against illegal mining, and thus combat silicosis at the root.

“While the policy gives financial relief, it is palliative care for a very painful death because of the disease,” he said. “It’s the prevention of this disease which is very important, and concerned departments have to take penal action against illegal mining, and enforce safety guidelines for workers in the legal mines.”

In recent weeks, there has been some progress in the matter of releasing financial aid. On July 7, a day after Soochna evam Rozgar Adhikar Abhiyan, or Information and Employment Rights Campaign, raised concerns about the failure to release funds for silicosis patients and demanded increased transparency in the process of online registration and evaluation, the Rajasthan government released just under Rs 91 crore to the silicosis fund.

“This happened after we and silicosis patients came to the secretariat from all around Rajasthan to put forth demands,” Dey said. “But this is just not possible to do every time.”

In the meanwhile, silicosis patients remain unaware of the point at which their payments are stuck, and are usually just told by the department that “the budget is not available,” as Babulal Saini said, after wrapping up his lunch break on a hot July afternoon.

Babulal’s silicosis advances, but he continues to work in the unit. “What else can I do?” he said. “The Rs 1 lakh and monthly pension is just not enough to support my family.” Dusting off sandstone dust from his trousers, he prepared to resume work. Soon, the hum of grinders filled the air again.

This reporting is made possible with support from Report for the World, an initiative of The GroundTruth Project.