The Healthy Appalachia Institute at The University of Virginia’s College at Wise received funding for a pilot project to document how black lung disease and progressive massive fibrosis have impacted lives and communities in Southwest Virginia and Eastern Kentucky.

The funding for the oral history and photography project—“Drowning in Dust: The Burden of Black Lung Disease in Central Appalachia”—comes from the Central Appalachian Regional Education and Research Center at The University of Kentucky. The research project will document how people’s lived experience with black lung disease, also known as coal workers’ pneumoconiosis, aligns, supports, questions and challenges the existing data that shows a dramatic increase in black lung and progressive massive fibrosis in Appalachian coal miners. In addition to supporting the ongoing work of Healthy Appalachia Institute, this project will support Tomann’s graduate work in Appalachian Studies at Radford University.

“It is an honor to be entrusted with people’s stories,” Tomann said. “I am extremely grateful for the opportunity to learn from participants and to co-author a narrative about coal workers’ pneumoconiosis and progressive massive fibrosis in central Appalachia. I hope that we can create an interactive experience that will raise awareness of the burden of these diseases.”

The project will seek to reveal factors associated with the dramatic increase in cases, challenges associated with prevention, early detection, screening, benefits applications, and the long-term impact on families and communities. Participants’ experiences, insights, and perspectives will have the potential to inform the future work of local, state, and federal organizations that support occupational safety and health for coal miners of central Appalachia. The project also has the potential to support policy legislation and regulatory change to better address the needs of miners and their families at all levels of prevention, including exposure prevention, early screening and detection, access to quality medical care, improved quality of life, benefits and legal counseling.

“ ‘Drowning in Dust’ represents Margie’s unwavering dedication to public health and demonstrates her desire to give voice to the coal miners, their family members, and associated support systems,” said Theresa Burriss, Tomann’s faculty advisor from Radford University. “The potential for effective change as a result of this project is real.”

About Black Lung DiseaseCoal workers’ pneumoconiosis (CWP), or black lung disease, is a preventable, debilitating, progressive and irreversible occupational lung disease caused by exposure to, and inhalation of, coal dust from underground and surface mines. This exposure can also lead to Progressive Massive Fibrosis (PMF), the most severe and progressive form of the disease. Research conducted by the National Institute for Occupational Safety and Health, in collaboration with Stone Mountain Health Services, a federally qualified health center in Southwest Virginia, recently documented an alarming number of miners with Progressive Massive Fibrosis (PMF), the largest cluster of PMF ever described in scientific literature. In the 2018 Journal of American Medical Association article, researchers identified 416 coal miners with disease meeting the case definition for PMF outlined by NIOSH. The 416 cases include both current and former miners, many having worked less than 20 years in the coal industry, indicating severe and rapidly progressive disease. This dramatic increase has been attributed to mechanization and changes in coal mining processes, low rates of screening and early detection, change in work shifts, thinner coal seams leading to increased cutting of rock and silica exposure, and a low number of miners seeking positions with reduced dust exposure after diagnosis.

About CARERC

The Central Appalachian Regional Education and Research Center (CARERC) is a CDC/NIOSH-funded training program led by the University of Kentucky and Eastern Kentucky University. The CARERC exists to provide state-of-the-art, interdisciplinary occupational safety and health research, education, and training opportunities for stakeholders in 177 high-need counties of eastern Kentucky, West Virginia, eastern Tennessee, western North Carolina, and Virginia. Regional pilot studies funded through CARERC address strategic aims of the National Institute for Occupational Safety and Health (CDC/NIOSH) and the National Occupational Research Agenda (NORA II).

For more information, contact Margie Tomann at mmt6m@uvawise.edu or 276-376-4882.