We need National Mesothelioma Registry for orphan cancer affecting Minnesota veterans

For generations, mesothelioma has become one of the deadliest and most overlooked diseases, which has already claimed thousands of lives nationwide. Though rare – with only 3,000 new cases reported annually – it disproportionately impacts military personnel, particularly those who served in Minnesota during the 20th century. Because of this widespread exposure, veterans now represent 30% of all mesothelioma diagnoses. As the condition is so uncommon, it is classified as an orphan disease, which typically refers to illnesses affecting fewer than 200,000 people. Most oncologists encounter it only a few times – if at all– in their careers, resulting in frequent misdiagnoses and delays in treatment. For patients, these delays can be fatal since they eliminate the chance for early intervention and dramatically reduce survival chances.
To tackle this problem, the Centers for Disease Control and Prevention (CDC) pushed for the establishment of a national mesothelioma registry in 2019. The initiative aims to provide regular screenings for at-risk veterans to enable prompt and accurate diagnoses as well as appropriate intervention. Given its promising goal, such a tool could offer hope where little currently exists.

Mesothelioma Epidemiology in Minnesota
Research has consistently revealed that the primary contributing factor for mesothelioma is routine exposure to asbestos, a natural mineral once hailed for its tenacity and affordability. Due to these properties, such a material was used across Minnesota, particularly in military infrastructure and other assets built in the World War II era. Local authorities consider asbestos fibers to be safe as long as they are not disturbed. However, only authorized personnel can work with them, including in the removal and containment of contaminated buildings as well as on-demand inspections for renovations.
Yet despite these efforts, Minnesota remains among the many states with the troubling asbestos-related tolls, which reached a total of 6,318 from 1999 to 2017. Of these, 1,176 were directly associated with mesothelioma, while 469 were linked to asbestosis. Hennepin County ranked first among the most impacted regions, with 1,116 casualties. With over 265,200 veterans in Minnesota, including 48,410 of them in the Hennepin area, such mortality rates can be considered alarmingly high.

Why is Mesothelioma misdiagnosed?
In developed countries, approximately 14% of mesothelioma cases are misdiagnosed, mainly due to the disease's long latency period. In the U.S., about 12% of these diagnoses occur as a result of a hereditary gene mutation. However, 80% of mesothelioma cases develop 20 to 40 years after asbestos exposure. This delay can lead both doctors and patients to overlook the connection between past exposure and the development of cancer. Another contributing problem to misdiagnosis is the cancer location. Most often, the tumor grows in the delicate tissue covering the lungs – a condition called pleural mesothelioma. Unfortunately, its symptoms are usually nonspecific, which is why patients may dismiss them and only reach out to their physicians when their situation gets worse.
Even when patients seek help for their symptoms, standard diagnostic procedures used in all cancers – such as imaging, biopsies, and marker analysis – are not always effective for disease detection. These issues are further complicated by the fact that many oncologists lack sufficient experience or knowledge of mesothelioma. With a relatively small patient population, research into the disease's pathophysiology, treatment options, and diagnostic methods remains alarmingly scarce.

The National Registry solution
Having a national registry for mesothelioma could potentially help solve all these issues as it improves identification rates and connects researchers with patients. As presented by the CDC, the national mesothelioma registry would use a case-finding methodology, whereby all populations at risk would receive regular screenings. At the same time, when any new case is identified, this would be reported directly through the registry, bypassing the current national statistics programme, where data takes several years to be reported.
In practice, this process would help researchers connect with scientists much faster. It would facilitate research progress, improving current mesothelioma knowledge and supporting the development of cutting-edge treatments for patients. Although research for the development of the registry is ongoing, possible developments are expected within the next two years. By this time, issues concerning patient confidentiality, as well as rapid diagnosis and the creation of data collection instruments, should already be complete.
Jonathan Sharp is the CFO of the Environmental Litigation Group P.C., located in Birmingham, Ala. In his role, he manages the law firm’s financial activities and conducts case evaluations for victims of toxic exposure.