While cancer research has experienced significant developments in the past two decades, resulting in considerable improvements in survival rates, for some cancers, progress is painfully slow.
Most of these conditions are considered orphan diseases because of the little interest they receive in research and developments for diagnosis and treatment. However, it is important to recognize that this interest directly correlates with the number of people affected.
One of these cancers is mesothelioma, with an average of 3,000 new cases diagnosed each year in the U.S. More than 80% of all cases can be traced back to asbestos exposure. As a result, this condition has a significantly high incidence among asbestos-industry workers and former military personnel who were exposed during service. The latter group represents almost a third of the total annual number of cases.
To address the limited available data on diagnosis methods and potential treatment pathways for mesothelioma, the Center for Disease Control and Prevention (CDC) proposed the implementation of a National Mesothelioma Registry to enhance research, diagnosis and treatment of this rare asbestos-related cancer. While more research is needed to test the feasibility of this shared national database, this registry is a much-needed development, even today, as decades of asbestos use across America continue to impact population health.
Mesothelioma’s growing impact in Wisconsin
In Wisconsin, between 1999 and 2017, a total of 6,815 asbestos-related deaths were recorded, of which 1,295 were attributed to mesothelioma and 362 to asbestosis. Certain areas in the state show particularly high concentrations of asbestos-related fatalities. Winnebago County, for example, recorded an estimated 224 deaths linked to asbestos exposure over this period.
Asbestos exposure in Wisconsin has been a significant concern due to the state’s extensive history of industrial activities, particularly in manufacturing, paper milling and shipbuilding. This state also has a significant veteran population, counting 283,767 people who served in the army. The military also used asbestos extensively for insulation and construction, so this population may be at risk. Almost half of these people served in the military when asbestos regulations for protection were yet to be developed. Now, these people not only risk developing mesothelioma, but may also face poor quality care because of limited treatment options and high misdiagnosis rates.
Accelerating Research for Diagnosis and Treatment
The U.S. cancer reporting system currently provides cancer estimates based on previous years. However, this is ineffective for patients with mesothelioma. For example, the latest real-world data for mesothelioma statistics provided by the CDC in 2025 is based on data collected in 2021. The average survival rate for pleural mesothelioma, accounting for most of all diagnosed cases, is just 9-12 months. Hence, by the time researchers can contact these patients for study participation, many are already dead.
Changing this system to instant real-world data reporting allows researchers to identify patients much sooner. At the same time, as new diagnosis methods develop, the registry also aims to implement a case-finding methodology by periodically inviting at-risk populations, such as veterans and industrial workers, to be screened. For patients with a diagnosis, and especially for those who are not seeing positive results from chemotherapy, immunotherapy or combination therapy, participating in clinical trials and testing out the latest cutting-edge treatments may be a final glimpse of hope.
Connecting Mesothelioma patients with specialized clinics: how a national registry could improve care
As mesothelioma is so rare, clinical expertise on this condition is also scarce, resulting in suboptimal care for patients. In this sense, the mesothelioma registry would record diagnosed cases as they are discovered and work as a database for specialized mesothelioma clinics, allowing patients to connect with the best possible healthcare providers.
Furthermore, as mesothelioma has a particularly high symptom burden, suboptimal palliative care may result in a degradation of the quality of life at the end, leaving patients to suffer from severe pain, breathlessness and other debilitating symptoms. The registry could significantly improve their quality of life and overall outcomes by ensuring that patients are directed to specialized clinics with expertise in mesothelioma treatment and palliative care.
Why veterans and researchers must push for action
Although the National Mesothelioma Registry presents a crucial opportunity to revolutionize how this rare cancer is diagnosed, studied and treated, this initiative has yet to be implemented, leaving mesothelioma patients and researchers without a centralized resource for advancing treatment.
Given that nearly one-third of all mesothelioma cases affect veterans, it is imperative that the Department of Defense and the Department of Veterans Affairs actively support the creation of this registry. Many of those diagnosed were exposed during military service, yet they face limited treatment options and misdiagnosis risks. Additionally, mesothelioma research groups, charities and advocacy organizations should also push for its implementation. Increased funding and legislative support could expedite the process, ensuring that those affected, especially veterans, receive the care and treatment they desperately need.
About Author
Jonathan Sharp is the chief financial officer at the Environmental Litigation Group, P.C., overseeing financial operations, conducting in-depth case evaluations and managing assets to support victims of toxic exposure. Dedicated to helping military and civilian clients, he is crucial in ensuring the firm’s resources are effectively utilized in the fight for justice.
