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In 2019, as part of a wide-scale effort to reduce misdiagnosis for mesothelioma patients, a National Mesothelioma Registry was proposed by the Center for Disease Control and Prevention but was left pending without further progress. Mesothelioma is a type of cancer that emerges in most cases decades after asbestos exposure. As there are approximately 3,000 cases diagnosed each year in the U.S., the rarity of this condition substantially slowed down research and development efforts for diagnosis and treatment. Now, the new registry proposes that all at-risk populations receive regular screenings, following a case-finding approach. One of the most predominant groups that are at risk of developing this type of cancer is comprised of army veterans, as asbestos was heavily used in the military, in equipment, weaponry and as an insulator in various facilities. As a result, from the total number of cases identified each year, 30% of mesothelioma diagnoses are made only in veteran populations.
ASBESTOS EXPOSURE AND EPIDEMIOLOGY IN HAYS COUNTY, TEXAS In Texas, between 1999 to 2017, there were a total of 15,348 asbestos-related deaths. From these, mesothelioma accounted for a total number of 2,688 deaths. Here, a concerningly high rate of mesothelioma cases is reported annually, with data from 2019 totaling 192 cases. In Hays County, there were 56 mesothelioma deaths reported from 1999 to 2017, at a rate of about 2 deaths per year. As mesothelioma is a type of cancer, standard procedures for diagnosis and treatment are used. In this sense, patients showing signs and symptoms of this condition are initially recommended X-rays and/or MRIs to confirm the presence of abnormal tissue. Next, to differentiate this condition from other cancers, tissue biopsies for visual inspection (histopathology) can be carried out, and/or tumor marker analysis may also be conducted.
However, all these stages have their own specific limitations. Firstly, most mesothelioma cases occur in the outer lining of the lungs, also known as the pleura. Pleural mesothelioma accounts for 80% of all cases, and it is also one of the most aggressive forms, with a survival rate of under a year for late diagnosis. Given the location of this cancer, most patients will experience a dry cough, fevers, and chest pains. All these symptoms are non-specific, meaning that they can easily be attributed to any number of conditions, from pneumonia to a bad cold. This manifestation leads to many patients disregarding the condition for months on end. Once in the doctor’s office, results from X-rays or MRIs can only confirm the presence of abnormal tissue masses but cannot differentiate between mesothelioma and other types of lung cancer. Subsequently, histopathology and tumor marker analysis are required. Herein lies the problem.
As mesothelioma is so rare, oncologists have little to no experience with this condition. Moreover, studies on specific presentations of mesothelioma in biopsied tissue demonstrate that no two samples are alike. This implies that between all samples collected, these differences make it very difficult for specific guidelines for identification to be reported. At the same time, current marker analysis options also demonstrate limited sensitivity and specificity, meaning that in about 30% to 10% of cases, marker analysis will not be able to identify true positive cases and respectively identify true negative cases. All these aspects indicate that there is still substantial research needed to develop diagnosis methods for improving current rates of detection. However, one more issue remains. To date, cancer cases are reported through the national statistics even two years after diagnosis. Researchers may therefore not be able to reach out to patients with mesothelioma for study participation, as many of these patients die even before their data reaches these centres. This is a significant problem that in effect impacts directly research progress.
NATIONAL MESOTHELIOMA REGISTRY, A MUCH NEEDED TOOL TO COMBAT MISDIAGNOSIS
Having a national registry would enable at-risk populations to be regularly screened. Moreover, as the registry is proposed, regular screening of at-risk populations could also improve detection rates. However, one of the most important features of this registry is the ability to connect researchers and patients at a much faster rate. As a result, patients may benefit from cutting-edge therapies, while researchers can expand current knowledge on diagnosis and treatment methods for this condition. Recently, data was published on the feasibility of implementing the registry nationwide. In this sense, data collection instruments for patients are already completed while current research efforts are being conducted to establish patient data confidentiality and data security methods, as well as new screening methods. Researchers forecast that these methods will be completed within the next two years. Hence, if all goes according to plan, the National Mesothelioma Registry will be up and running by the end of 2026.
Jonathan Sharp is the CEO of the Environmental Litigation Group, P.C., in Birmingham, Alabama. Jonathan oversees the law firm’s financial activities and provides support for case evaluations, advocating for the victims of toxic exposure.
