A national patient registry for mesothelioma is now a real possibility in the United States.

Antonio Delgado and John Katko, two House of Representatives members of New York’s 19th and 24th districts, introduced a mesothelioma patient registry as a formal bill. It’s titled the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021.

The bill would establish a registry at the Centers for Disease Control and Prevention (CDC) for this specific cancer. The disease forms from exposure to asbestos, a raw mineral found in soil and used to prevent overheating.

The bill is named in Mary Joe Lawyer Spano’s honor. She is a New York native whose family was affected by malignant mesothelioma. Spano’s father was exposed to asbestos while working for an elevator company. He brought sharp asbestos fibers home, which exposed his family. Mary Joe Lawyer Spano died of mesothelioma in 2014, and her sister, Meg Meccariello, passed away in 2015.

The family advocated for a national patient registry.


Why a National Registry Can Help Against Mesothelioma

The decline of asbestos signaled a possible end to mesothelioma. However, the attacks on the World Trade Centers in New York led to concerns of a resurgence. The two buildings were made with hundreds of tons of asbestos. Approximately 450,000-500,000 people, including nearly 100,000 first responders, were exposed to airborne asbestos on Sept. 11, 2001.

This event inspired Rep. Katko to reintroduce a national registry.

“I’m reintroducing a bill inspired by a Central New York native who lost her four year battle with mesothelioma in 2014,” said Rep. Katko. “Sadly, many Americans, including hundreds of 9/11 first responders, are still suffering from this terrible disease. By creating a national registry, my bill will help us take meaningful steps to understand, treat, and eventually cure mesothelioma.”

There isn’t a cure currently for mesothelioma. Treatment options are scarce, with surgery the best option but most patients relying on chemotherapy or immunotherapy. Most patients live for 1-2 years after diagnosis.

The registry would compile voluntary health information from patients. This data can improve how providers treat mesothelioma and support victims and families. Other aspects of the registry include:

  • Sharing therapeutic information between doctors and oncologists
  • Revising the standard of care, treatment and support for patients and families
  • Identifying and promoting cancer centers proven to help mesothelioma patients

    Sources & Author

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About the Writer, Devin Golden

Devin Golden is the content writer for Mesothelioma Guide. He produces mesothelioma-related content on various mediums, including the Mesothelioma Guide website and social media channels. Devin's objective is to translate complex information regarding mesothelioma into informative, easily absorbable content to help patients and their loved ones.

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