Mesothelioma is a highly complex type of cancer that emerges several decades after asbestos exposure. A large portion of the people diagnosed with this condition are veterans who served in the Army and the Navy during periods of high asbestos use from the 1940s up to the late 1990s. Mesothelioma, unlike other asbestos-related diseases, is exceptionally rare, with fewer than 3000 cases diagnosed each year in the U.S. Veterans account for approximately 30% of all these cases. At the same time, the remaining portion is attributed to industrial workers who were similarly exposed to asbestos.

As mesothelioma is an insidious disease with non-specific symptoms, clinical diagnosis is often confused with other types of cancers or pneumonia, especially during the early stages. Therefore, patients generally benefit from an extended life expectancy with timely diagnosis. However, most mesotheliomas are diagnosed in late stages, when intervention other than palliative care is unlikely. Each year, around 14% to 50% of all cases are misdiagnosed, albeit the misdiagnosis in some cases is hypothesized to exceed 80% in the absence of specialized services.

The rarity of this condition also implies that pathologists have limited clinical data for understanding and subsequently identifying mesothelioma. This issue is further compounded by mesothelioma non-specificity, as this cancer can exhibit various types of patterns, which make it hard to be distinguished via standard protocols, such as imaging, tumor marker analysis, or biopsies. As a result, the condition can remain undetected and progress rapidly to unmanageable cancer.

To address this complex public health issue, the Centers for Disease Control and Prevention proposed the development of a central database where cases identified would be instantly reported, allowing researchers access to patients with mesothelioma. This National Mesothelioma Registry creates an advantage for researchers, who can access potential participants in mesothelioma clinical trials more readily, and for patients who can access cutting-edge therapies from these trials and access specialized services. The registry has the potential to improve research into diagnosis and treatment for mesothelioma. It can also change current patterns of identification and reporting, leading to increased early detection of this rare condition.

Mesothelioma Incidence in Georgia’s Counties

Between 1999 and 2017, Georgia recorded 4,172 asbestos-related deaths, including 777 from mesothelioma and 302 from asbestosis. These numbers can be traced back to asbestos exposure in this state, particularly at military bases and industrial sites, but also in natural settings, as Georgia has the country’s third largest natural asbestos deposits. During the same timeframe, Cobb County saw 263 deaths, with risks tied to an asbestos landfill and recent EPA violations. Gwinnett County reported 225 deaths, while Chatham County had 196 deaths, and Hall County reported 101 deaths. 

While these rates may be connected with industrial and military exposure, Georgia’s significant veteran population cannot be disregarded. This state holds 607,506 veterans, many of whom served in wars before asbestos protection regulations. Each of these individuals is now at risk of developing mesothelioma. Developing and implementing a national mesothelioma registry could potentially improve diagnosis rates for these veterans and provide them with better care through early detection.

A National Registry to Reduce Misdiagnosis

A National Mesothelioma Registry would significantly reduce misdiagnosis by enabling large-scale, coordinated research into the disease’s early indicators. By gathering data from rare mesothelioma patients nationwide, researchers can identify subtle diagnostic markers often missed in isolated clinical settings. This access allows for longitudinal studies that trace disease progression from early, non-specific symptoms to definitive diagnosis, refining clinical awareness and testing protocols. Additionally, using case-finding methodologies, such as screening at-risk populations like veterans and industrial workers, would allow for earlier identification of suspicious patterns. As informed by registry data, these targeted screenings could catch mesothelioma before it reaches advanced, untreatable stages.

However, progress in researching the feasibility of the registry is stagnant, with just two studies investigating issues of patient data confidentiality and rapid screening. As mesothelioma is so rare, the condition displays all characteristics of orphan diseases, with reduced interest from pharmaceutical companies and limited funding for large-scale clinical studies. This lack of commercial incentive has slowed innovation in diagnostics and treatment and now in evaluating the feasibility of a national registry. Advocacy and pressure for state funding research from veterans’ organizations, public health groups, and affected families is now essential to advance the development of the National Mesothelioma Registry.

About the Author

Jonathan Sharp serves as the Director of Financial Operations at Environmental Litigation Group, P.C., where he focuses on guiding clients through the complexities of environmental claims. His work centers on assisting individuals and families suffering from exposure to hazardous substances such as asbestos.