To the Editor:

Mesothelioma is a rare cancer that occurs after prolonged exposure to asbestos. In the U.S., data reported by the Centers for Disease Control and Prevention (CDC) shows that in 2021, a total of 2,804 cases were diagnosed. Later data on incidence indicates that this condition affects mostly veterans and industrial workers, who were exposed to asbestos for extended periods during work and service.

Misdiagnosis rates for mesothelioma are significantly high, with reports estimating this at 14% to 50% of all cases. Subsequently, most veterans will get a late-stage diagnosis, when survival rates are measured in months. This is problematic not only because treatment options are limited in this stage, but also due to the increased symptom burden that these people experience. One study investigating late-stage mesothelioma and patient care reports that over 70% of patients suffer from frequent breathlessness, and over 60% report pain, even with ongoing medical treatment. 

The CDC and the Department of Health and Human Services sought to address this problem and improve detection rates by establishing a National Mesothelioma Registry. The scope of this database is to collect real-time information on cases, bypassing the current estimates-based cancer reporting system. By doing this, mesothelioma patients would have their own centralized system, allowing researchers quicker access to sample pools, and thus expanding research interest by minimizing the issue of disease rarity and limited participants. Concomitantly, research would be funded through state-based grants, hence further addressing an issue that many orphan diseases face, namely, low medical commercial interest and investment. 

However, although the registry was proposed in 2019, in terms of feasibility research, only one study sought to explore potential issues with data confidentiality for patients, and another study discussed possible surveys that can be used to screen for mesothelioma in high-risk populations, including veterans. Advocacy efforts may therefore be essential in bridging the gap between policy and implementation. Veteran organizations, public health coalitions, and patient advocacy groups play a key role in raising awareness, lobbying for funding, and pushing legislation forward.

Mesothelioma risk in Massachusetts, Plymouth County:

Between 1999 and 2017, Massachusetts recorded a total of 8,103 asbestos-related deaths, pointing to the state's long-standing struggle with the legacy of asbestos use. Of these, 619 were attributed to asbestosis, 1,505 to mesothelioma, and an estimated 6,020 to non-mesothelioma lung cancer linked to asbestos exposure.

In Plymouth County alone, the toll was significant, with 872 asbestos-related deaths reported during the same period, averaging approximately 45 deaths each year. These figures are not surprising given the county’s historical connection to high-risk exposure sites, including shipbuilding yards, railways, and power facilities. Locations such as the Plymouth County Street Railway Company and the Pilgrim Nuclear Power Station were known to rely heavily on asbestos-containing materials, exposing countless workers to asbestos for decades. Many of these workers were also veterans, who suffered another stream of exposure during their service.

Today, 25,345 veterans live in Plymouth County. A significant portion of these people served in the military long before regulations on worker protection against asbestos and subsequent bans. Hence, these veterans are now at risk of developing asbestos-related illnesses, including mesothelioma. For them, developing and implementing a national registry that would support better diagnosis and treatment is not just a policy necessity; it’s a matter of justice. With thousands of veterans potentially at risk, advocacy becomes crucial. Veteran service organizations, community health groups, and medical researchers must collectively push for funding and political action to bring the National Mesothelioma Registry to life.

Jonathon Sharp

Director of Financial Operations at Environmental Litigation Group