Pneumoconiosis is by far the most prevalent occupational disease in China, accounting for some 90 percent of all cases. But it is also one of the most under-reported diseases in China, with many estimates putting the actual number of cases ten times higher than the official figures recorded by the government.
The main reason for such dramatic under-reporting is that many workers find it next to impossible to complete all the bureaucratic procedures needed to get registered, the first and most important of which is getting an official diagnosis of pneumoconiosis. Only approved occupational disease hospitals can make such a diagnosis but it is precisely those hospitals that often collude with employers and local government to misdiagnose or simply refuse to diagnose pneumoconiosis.
Jiao Jianlong, a steelworker from the north-western province of Gansu, spent more than three years trying to get a proper diagnosis but always ran up against a brick wall. His employer, the Jiuquan Iron and Steel Group was by far the most important enterprise in town and no one at the local hospital or government would dare go against it. In the autumn of 2013, Jiao discussed his ordeal and possible options with China Labour Bulletin Director Han Dongfang.
Jiao was a blast-furnace worker in the ferro-alloy unit of Jiuquan Steel, breathing in dust every day from the iron slag. He joined the enterprise in 2008 and by October 2010 was already showing early signs of pneumoconiosis:
I was coughing; I had shortness of breath and sometimes chest pains. When it became particularly severe I had to go to the steelworks hospital. After testing me, they told me, yes, it was pneumoconiosis.
However, this was only an informal diagnosis. He was then sent by the steelworks hospital to their respiratory unit, which likewise said he had pneumoconiosis. Jiao was promised that the doctors would gather the necessary documents to confirm the diagnosis, but it was only seven months later, after considerable procrastination, that the steelworks doctors submitted their official written diagnosis. Jiao was told he did not have pneumoconiosis after all.
This was the beginning of a three-year battle from 2010 to 2013 during which time Jiao made countless clinic and office visits and sought confirmatory diagnoses but wherever he went, the same pattern emerged: Those medical institutions that said he did have pneumoconiosis lacked the qualifications to diagnose occupational illness, while those that were qualified would not commit themselves or said it was something else.
After being left in limbo by the doctors at the steelworks, Jiao went to the local authorities in the town of Jiayuguan:
The section chief at the municipal Health Bureau said it really was pneumoconiosis, but when the results of the testing came through—I saw several specialists—the result was again I was not suffering from pneumoconiosis
In the end, the doctors in Jiayuguan decided he had tuberculosis, a common and often deliberate misdiagnosis in cases of pneumoconiosis. Jiao was referred to the Xijing Hospital in Xian, where he had a lung biopsy, which ruled out TB. Once more, he was told that he was suffering from pneumoconiosis. But this hospital was not qualified to make an occupational illness diagnosis. At the Central Hospital in Xian, the test results showed he had Stage 1+ pneumoconiosis but again the result did not count because “I was from Gansu and Xian cannot do occupational illness diagnoses for people not domiciled in Shaanxi.”
And so it went on. In Lanzhou, capital of Gansu, evaluators at the provincial Health Inspection Unit told him it was not pneumoconiosis. On another occasion, he was told that getting a lavage to show the accumulation of dust in his lungs would not help his cause either because “dust can accumulate in the lungs of normal, healthy people ... because in the northwest of China, the wind is always very strong and the air people breathe daily is laden with sand.” Throughout these and other fruitless medical tests and hospital visits, Jiao encountered repeated obfuscation and lack of commitment:
The qualified places, including the steelworks, avoided my questions, they said that the decision-making is ‘not up to particular individuals,’ and they passed the buck amongst themselves.
Jiao had dealings with no fewer than eight doctors at the steelworks, but later was only able to contact half them - the others, he thinks, were avoiding him. He said that the steelworks’ attitude had been ambiguous throughout.
Sometimes they acknowledged that it is occupational and sometimes they would not. They told me that the evaluation results did not support occupational illness, that sort of thing.
As his condition worsened, Jiao gradually lost the ability to work normally.
Sometimes when I went to work, I would get lung infections and would have to go to hospital for treatment. When I had a fever from a lung infection, I might not be able to get up if it was particularly severe… I was approached by the general manager, who told me that there was nothing that could be done, that was the situation, but they would give me a livelihood allowance.
In March 2012, Jiao was placed on sick leave. He remains a full-time contracted employee at the company, which pays him just over 1,300 yuan per month, a figure, in line with benefits paid to other, older workers at the factory who had also contracted pneumoconiosis, and like him had failed to obtain an official acknowledgment of occupational illness.
They say I cannot write ‘pneumoconiosis’ when I pick up the payment, so I write ‘lung fibrosis,’ combined with infections. I had to sign stuff. It seems that the paperwork went to the Labour Bureau, they are evidently involved. The management tacitly approves the payment as being for silicosis (a form of pneumoconiosis).
Han Dongfang pointed out that by not openly admitting that Jiao and the other workers at the plant had pneumoconiosis the factory management could avoid paying the much higher compensation and benefits package that would have come from a formal pneumoconiosis diagnosis.
The payment (just above the local minimum wage) was better than nothing, but Jiao, aged just 33, is unable to support his wife and two children, aged nine and seven. His wife does not work. Asked if he was able to do any kind of job now, Jiao replied:
If the temperature is mild like it is today I can do household chores, but if it is a winter or summer’s day, I simply cannot do anything. As soon as I catch a cold, I am grounded. The light work that I can do is helping with washing dishes or cutting vegetables, that kind of thing. I can help sweep the house.
But he is basically unable to go out and earn a living. “Things are okay if I stay at home resting.”
Throughout his time at the steel plant, Jiao said the workers never once had their lungs tested, a requirement for all workers in high-dust environments under the Law on the Prevention and Cure of Occupational Diseases. Han explained that any employee who comes into contact with dust during the performance of duties should have a periodic check-up (after between six months and two years). But Jiao said during all his years of service, he and his colleagues had only ever had routine annual medical examinations, without lung inspections. Jiao pointed out that there were many other workers suffering similar health problems to him. Some, he said, were prompted by his plight to get themselves privately tested for occupational illness, and after getting the result, had resigned. Others, like his own father, were now retired and living on a pension, but like Jiao without occupational illness benefits.
Of particular significance, Han said, was management’s failure to give Jiao a health test when he first started at Jiuquan Steel. He had worked at a different steelworks for seven years before joining, in a similar job with heavy dust exposure. Jiuquan’s management could thus have argued that his condition originally predated his arrival at the works, but their failure to test him when he joined undermined that position. Unless proven otherwise, responsibility in the case of occupational illness lies with the most recent employer, and not with any preceding one.
Looking back over Jiao’s case, Han identified a number of possible breaches of diagnostic procedure and occupational illness regulations, relating to the number of doctors involved, signature collection and storage of permanent records among other things. Specifically, Jiao was not allowed to select his own medical evaluator, he was not allowed to complete a personal statement to the occupational illness evaluators, and the medical experts failed to arrange for a definitive medical examination as required under the regulations in the case of disagreement.
Han pointed out that these seemingly minor transgressions opened the pathway for legal action. He strongly urged Jiao to stop doing the rounds of hospitals and local authorities and go directly to court instead:
If you go after the people involved, and try to get them to admit they made a mistake, do you think they will cooperate with you? In the end, everything was on a verbal basis, and so you have to ask what legal effect that has. If you hire a lawyer, I believe you could get the diagnosis and evaluation conclusions overturned, get a new diagnosis done later and, at a minimum, start again from a better bargaining position. This is your entry point.
But Jiao was sceptical:
I know a lot of people are filing lawsuits right now... but I am not confident, I do not trust the legal process and if I do take legal action and it is dragged out, I would not be able to afford it... People like me, us workers, there’s nothing we can do. The other guys have the power and the money… And there is the question of court officials... I have read a lot about these lawsuits online and I know that enforcement is chaotic.
Instead, Jiao was focusing on his work as a volunteer for the charity Love Save Pneumoconiosis, which helps victims of the disease and keeps the issue in the public view by publicising important developments via social media. By engaging on social media, Jiao said he now felt part of a community, a community that has the power to help itself.
If I had not been doing social media, I don’t think I would have persisted with this up to this point. I now want to help people in a worse position than myself - people living in remote mountain villages that did not go to school and never got an education. I know many people in a worse position than me.
This interview with Jiao Jianlong was first broadcast on Radio Free Asia's 劳工通讯 in eleven episodes in October and November 2013.