Three years ago, a group of 180 migrant workers made national headlines when they travelled back to Shenzhen to demand compensation [2] for the deadly lung disease, pneumoconiosis, they had contracted whilst working on the city's construction sites in the 1990s. After staging protests and threatening to sue to Shenzhen government, they were awarded with various levels of compensation, ranging from 70,000 yuan to 130,000 yuan depending on the severity of their illness.

At the time, the workers' action was seen as a notable breakthrough, but when China Central Television's News 1+1 visited the workers in their home town of Leiyang in the central province of Hunan last month, a very different picture emerged [3].

Nearly all of the Leiyang workers had been their family's sole breadwinner. After contracting pneumoconiosis, most could no longer work and so the entire family had to depend on the compensation award to get by. But after paying off existing debts and dealing with on-going medical expenses, the compensation quickly disappeared. One of the workers interviewed by News 1+1, Xu Zuoqing, was completely incapacitated and reliant on an oxygen tank to breath. His wife was also sick and could not find a job while his children were too young to work. He told News 1+1:

"I have spent almost all of the compensation and now I don't know what to do. I have no real aspirations anymore. We just live from day to day."

News 1+1 pointed out that under the current compensation system, workers who are not covered by the work-related injury insurance scheme can only receive a one-off compensation payment in "special circumstances." However, occupational diseases such as pneumoconiosis require constant care and expensive medication and, sooner or later, the program said, the money will run out:

"We did a calculation and the lowest estimate of the cheapest medicines would be at least 100 yuan per month. As for the cost of hospitalization, if you have complications caused by pneumoconiosis, then every month you'd probably have to pay some extra expense of over 1,000 yuan. However, if you adopt the most effective and best treatment for pneumoconiosis, a lung lavage, you'd have to spend 10,000 yuan each time. So is this one-off compensation payment sufficient? Obviously, it is not!"

But the real tragedy is that the vast majority of migrant workers cannot even get a one-off compensation payment. Most workers never signed an employment contract with their employer or cannot locate their former employer after they get sick and as such they have to plead to the local government or charity organizations for assistance. A volunteer for the most active and most influential charity organization in China, Love Save Pneumoconiosis, described to News 1+1 the situation she found in many of the villages that have been devastated by the disease.

"Their life is extremely tough. All the people we've visited used to be the pillar of their family. After they got sick, they lost almost all their ability to work. Their life has been a mess and their children are on the verge of dropping out of school. Some of them have no choice but to go out for work again in spite of their illness, which in turn speeds up their death. For some families, both father and son, or brothers have pneumoconiosis, which tears the whole family apart."

"If they get specialized treatment in the early stages of the disease, they can live on for many years but the people we visited have no money for treatment in specialized hospitals. Some can only take injections and get medication in township health centers, which often aggravates their illness. Most have already missed the window for lung lavage treatment. They developed Stage II and Stage III Pneumoconiosis very quickly, and the fatality rate in these stages is rather high. The villages that we've visited are covered by the shadow of death."

In 2011, the Law on the Prevention and Control of Occupational Diseases was amended to allow workers who have not signed an employment contract or who cannot find their employer to apply to their local government for assistance. But even after the passage of the amendment, many obstacles still exist. News 1+1 discovered that although some local governments are supposed to cover 90 percent of treatment costs for pneumoconiosis patients, in reality, patients are lucky if they get 60 percent back because certain treatments and drug therapies are not covered by the scheme, or local governments simply claim that they do not have the resources to handle all the claims coming in. This means that many people with pneumoconiosis still cannot afford proper treatment.

The program highlighted one drug, tetrandrine, which has proven to be effective in alleviating the symptoms of pneumoconiosis. But each treatment costs in excess of 1,000 yuan per month, putting it well beyond the reach of the vast majority of patients. Moreover, the drug is not listed in the national medical drug insurance catalogue and as such local governments in regions with large numbers of pneumoconiosis patients can refuse to include it in their insurance catalogues as well. For many scholars and opinion leaders in China, the failure to provide the victims of pneumoconiosis with a proven treatment is a national scandal. Lu Huilin, Associate Professor of Sociology at Peking University told News 1+1:

"I feel that these days we are racing against time to treat people with pneumoconiosis. Once diagnosed, they should be treated without delay. We note that the majority of pneumoconiosis patients come from the underdeveloped central and western regions of China, so it is imperative that [tetrandrine] should listed in the medical insurance catalogue. After that, I think there should be some additional institutional measures. For instance, there should be some financial transfer and financial support to match the policy."

Professor Lu stressed that because the pneumoconiosis epidemic in China is the direct result of unbridled economic development at the expense of workers' health and safety, the government was obligated to implement new institutional measures to properly protect workers:

"Today, according to official figures there are 650,000 people with pneumoconiosis in China. According to our investigation and estimation, the actual number is far higher than that, so institutional measures must be adopted. Our suggestion is, once a patient develops the symptoms of pneumoconiosis, they should be properly diagnosed, and once the diagnosis is confirmed, the work-related injury insurance fund should cover all medical payments and compensation. Alternatively, we should establish a relief fund for pneumoconiosis at the national level. I believe this is the ultimate solution."

Calls for the government to set up a national relief fund are increasingly common now in China, although little research has been done to determine the best mechanism by which such a fund could be established and maintained over a long period of time. In China Labour Bulletin's latest Chinese language research report [4] on pneumoconiosis, published last November, however we suggest that the fund should have two sources of financing: a government treasury allocation and a pro rata fee collected by the government from all enterprises in high-dust industries. Enterprises with higher dust levels would pay higher fees and this would then in turn encourage such enterprises to undertake dust control measures that would reduce the risk of dust inhalation for their current employees.

In addition, CLB will be making a detailed submission to the Ministry of Human Resources and Social Security regarding its Opinion on certain issues regarding the implementation of the Work-related Injury Insurance Regulations (关于执行工伤保险条例若干问题的意见) during the ministry's period of public consultation, which ends on 20 February, a few weeks before the opening of this year's National People's Congress in Beijing.

An English-language version of CLB's new pneumoconiosis research report, 谁之责？—  对中国尘肺病群体的救助与赔偿研究 [4]will be published on 28 April 2013 to mark the World Day for Safety and Health at Work, the theme of which this year is the Prevention of Occupational Diseases.