Mesothelioma is a rare malignancy affecting people exposed to asbestos. Each year, across all cancer diagnoses, mesothelioma accounts for fewer than 3,000 cases. As a result, research interest in this condition is limited, with dire consequences for patients. Of all cases identified, veterans account for a substantial portion, as during the Cold War era, asbestos was extensively used by the U.S. Military throughout all its divisions. Among these, Navy veterans carry the highest burden of asbestos-related diseases, as they often worked in confined spaces below decks, where the accumulation of asbestos fibers was intense. When compared to other veteran groups, those who served in the Navy between 1950 and 1980 have a sixfold increased risk of dying from mesothelioma.

Due to underdeveloped diagnosis methods, error rates reach 14 percent even in developed nations, contributing to poor health outcomes for these patients. Concomitantly, with late-stage diagnosis, patients are less likely to respond to currently available systemic therapies such as chemotherapy and immunotherapy. For many, surgery to remove the cancer, followed by systemic therapies, is no longer an option once the cancer has spread. Survival rates with mesothelioma thus rarely exceed one year. Patients are usually referred to palliative care, or in rare cases, have the opportunity to take part in clinical trials for newly developed treatments. Nonetheless, research shows that even with palliative symptom management, patients still experience high rates of discomfort, with pain and shortness of breath reported by more than half of those surveyed.

For rare conditions, also referred to as orphan diseases due to limited research interest and treatment development, registers are a well-documented strategy, collecting real-world data to help improve understanding of the disease, track patient outcomes and facilitate the development of new treatments. This approach was proposed for mesothelioma in 2019 by the Centers for Disease Control and Prevention. The National Mesothelioma Registry aims to collect data on diagnoses in real time, connect patients with researchers to improve clinical studies on this condition, and provide valuable insights into exposure histories, treatment effectiveness, and long-term outcomes. The registry also proposes the use of rapid screening methods and the application of a case-finding methodology, where at-risk populations would receive periodic screenings for early detection.

Although a good approach for improving mesothelioma care, this centralized database is yet to make it past its feasibility testing phase. Considering the Department for Veterans Affairs has a vested interest in improving outcomes for veterans exposed to asbestos, particularly those diagnosed with mesothelioma, their involvement could accelerate the registry’s implementation and secure funding for its future development.

West Virginia has a rich history of asbestos exposure due to its steel manufacturing operations, where manufacturing plants, such as mills in the Northern Panhandle, used asbestos extensively for insulation and fireproofing. A naval operations station was also located here, which, although it did not carry shipbuilding activities, was constructed during the Cold War, when asbestos use in the U.S. was extensive.

Between 1999 and 2017, 3,072 people died of asbestos-related diseases in West Virginia. More than 500 of these deaths were linked to mesothelioma. In Hancock County, 105 people lost their lives to asbestos illness, with another 42 in Brooke County. Because of its asbestos-reliant industry, this state has a mortality rate of 8.8 per 100,000 people caused by asbestos. In America, the rate of asbestos mortality on a national level is 4.9.

However, pockets with high incidence do exist. For example, given the extensive use of asbestos in this region, in Hancock and Brooke counties, these rates are 17.8 and 9.7, respectively. Currently, more than 110,000 veterans live in West Virginia, and almost half of them served in the military during peak asbestos use. Around 2,000 of them live in Hancock County, and just over 1,000 live in Brooke County. A significant number of these veterans may have been exposed to asbestos during service and are now at risk of developing mesothelioma and other asbestos-related conditions. For these people, as well as for others living in high-exposure areas, the National Mesothelioma Registry could make a difference for better care and improved outcomes.

The VA, as well as other veteran organisations and environmental groups, should thus strive to raise awareness on the importance of this centralized system and advocate for its implementation.

(Sharp is the CEO of the Environmental Litigation Group, P.C., a law firm based in Birmingham, Ala., providing legal representation and consultations for people affected by toxic exposure.)