Breathing Hope: Empowering Pneumoconiosis Afflicted Patients and Families
December 2020 - Ongoing
Pingxiang, Jiangxi, China
Xingjian Volunteer Association
Pneumoconiosis is an occupational disease caused by prolonged exposure to substantial amounts of harmful mineral dust in the workplace, resulting in irreversible lung damage. The disease initially manifests with symptoms such as cough, chest tightness, and chest pain, progressively leading to immobility, oxygen dependency, and ultimately death. In many regions of China, there are millions of pneumoconiosis-afflicted patients who do not receive recognition or compensation for their occupational disease. As a result, they bear the burden of high medical expenses, and "poverty due to illness" becomes a defining aspect of their lives.
In response to this issue, we collaborated with a public welfare organization in Jiangxi province dedicated to assisting pneumoconiosis-afflicted patients and their families.
◎ Construction of Pneumoconiosis Rehabilitation Centers: Pneumoconiosis is an incurable disease, but its progression can be slowed, and patients' quality of life can be improved through rehabilitation. Rehabilitation centers play a crucial role in this process. Since November 2021, our team has sponsored the Liangfang Rehabilitation Center in Lianhua County, Pingxiang City, Jiangxi Province. We funded the salaries of a Rehabilitation Doctor and a Rehabilitation Specialist to enhance medical assistance and provide compassionate care to pneumoconiosis patients.
◎ Medical Research in Pneumoconiosis Rehabilitation: Pneumoconiosis patients endure long-term symptoms like cough, chest tightness, and dyspnea, often leading to complications such as tuberculosis and COPD. To improve their quality of life, we collaborated with local welfare organizations to conduct medical research. Our goal was to explore ways to alleviate pain and enhance the lives of pneumoconiosis-afflicted farmers. Over several months, we formed a project team of 20 individuals, conducting research on the effectiveness of heating vests in winter rehabilitation. We collected thousands of data points through weekly telephone follow-ups and patient monitoring, culminating in a report on the preventive benefits of heating vests for additional pneumoconiosis symptoms during the winter.
◎ Supporting Entrepreneurship for Pneumoconiosis Families: Pneumoconiosis often renders patients physically inactive, pushing their families into poverty due to illness. Encouraging patients to start their businesses can be an effective means of addressing their financial struggles. The team offered one-on-one support to pneumoconiosis-afflicted families facing obstacles in starting their businesses, including limited startup funds and difficulties in product sales. Between 2021 and 2023, we supported a pneumoconiosis-afflicted family in raising cattle, distributing two cows to the patient and family members to generate sustainable economic income. Additionally, we supported local fruit and vegetable farmers in expanding their sales channels.
◎ Public Awareness Campaigns: To address the current situation of pneumoconiosis, our students have undertaken various public awareness initiatives. These include TED talks, charity dinners, charity sales, performances, and film viewings throughout the country. The proceeds from these activities are directed towards local charitable organizations.
◎ WeChat Software Development for Pneumoconiosis: To track the medical treatment and rehabilitation progress of pneumoconiosis patients and facilitate efficient self-health management, we are developing WeChat software that provides essential medical information. The software's final UI design has been confirmed, and it will soon be developed and put into use.
◎ Research on Pneumoconiosis Policy: While studies on the social security system for pneumoconiosis have mostly focused on disease identification and occupational categorization, limited attention has been given to existing medical policy systems. Given the substantial economic burden pneumoconiosis places on patients and their families, our students embarked on a study of the social security policy system for Chinese pneumoconiosis migrant workers. Based on research and local investigations of pneumoconiosis-afflicted farmers, our report identified potential issues in the implementation of social security policies and provided recommendations to address these challenges. The report aims to develop a comprehensive social support policy for pneumoconiosis patients, helping alleviate their hardships.
◎ Oral Records of Pneumoconiosis Farmers: Raising awareness and preventing occupational diseases are essential. Recording the stories of pneumoconiosis patients can help increase social awareness and provide valuable insights for future prevention and treatment efforts. We have recorded over ten oral accounts from pneumoconiosis-afflicted farmers, with plans to publish them on the Internet.