Opinion: Why is a National Mesothelioma Registry Necessary for Veterans in 2025

Every year in the U.S. approximately 3000 people receive a mesothelioma diagnosis. This condition is quite rare but emerges in about 80% of cases many years after asbestos exposure. 30% of these cases are detected in veterans due to exposure during service, while professional categories working with asbestos are also at risk. To date, clear statistics on mesothelioma patients are not available, with the latest data reported by the National Environmental Public Health Tracking Network in 2019. More concerningly, in using the International Classification of Diseases manuals, mesothelioma is not classified correctly by pathologists in about 20%-25% of cases. In the newest version of the manual, this problem persists, with researchers arguing that these errors lead to a significant gap in identifying true mortality rates for this condition.

The Centre for Disease Control (CDC) is also chronically aware of this problem, as there is a high probability that many causes of death listed as malignant neoplasms of other and ill-defined sites, may in fact be mesotheliomas. Moreover, it is important to recognize that over 80% of mesotheliomas occur in the pleura. These cancers generally present with non-specific signs and symptoms which causes patients to delay investigations and doctors to mistake this disease for a far less threatening condition. Additionally, research on this disease is scarce, and this issue in particular is compounded by a substantial lack of clinical experience from oncologists and pathologists, given that this condition is so rare.

In response to these concerns, the CDC proposed in 2019 the creation of a National Mesothelioma Registry, where new cases would be identified by using regular screenings of at-risk populations. Furthermore, these cases would be reported directly through the registry, and thus eliminate the long process required for these data to reach national statistics. This change has the potential to prompt important research developments in diagnosis and treatment, as researchers and patients would find it much easier and faster to connect.

Mesothelioma and Asbestos Exposure Risk in Pennsylvania

Pennsylvania is one of the states that enforces the asbestos ban set by the Environmental Protection Agency in 1989. However, asbestos is still present in many cities, as this was used in construction as an insulator and fireproof material. Nonetheless, removing asbestos may be more harmful than simply containing it. When undisturbed, asbestos fibers do not pose a health hazard. However, if the mineral is broken down, fibers reach the air and become dangerous when inhaled. As a result, special licensing and training is required by all personnel working with asbestos. From 1999 to 2017, Pennsylvania recorded a total number of 17,717 asbestos-related deaths, of which 3,257 were attributed to mesothelioma cases. Moreover, according to the track record provided by the CDC, from 2015 to 2019, a total of 176 people died because of mesothelioma.

As mesothelioma from asbestos exposure constitutes a case of personal injury or wrongful death in the case of a deceased loved one, it is often addressed through legal claims seeking compensation for medical expenses, lost wages, pain and suffering, and other damages. Victims or their families typically file lawsuits against manufacturers, employers, or other entities responsible for the asbestos exposure. These claims can fall under personal injury law for living patients or wrongful death statutes if the victim has passed away. Proper documentation of the disease, exposure history, and legal timelines is crucial for successfully pursuing such cases. Notably, Pennsylvania has a statute of limitation on these claims (Section 5524.0 – Title 42), meaning that there is a limited time for a lawsuit to be filed. In this case, the time frame set is two years since diagnosis.

How Can the National Registry Improve Misdiagnosis Rate?

At present, research on the feasibility of the National Mesothelioma Registry is being conducted. These investigations hope to clarify patient confidentiality, researcher access, as well as potential rapid diagnosis screening. By 2026, these inquiries should be complete. If implemented, the registry can be a much better statistics reporting tool, facilitating real-time tracking of mesothelioma cases. Moreover, with easy access to patients, researchers can develop investigations that would improve current diagnosis methods, reducing error rates, while at the same time, allowing patients access to cutting-edge therapies developed in clinical trials.