Congress reintroduces bill for national mesothelioma registry

Federal lawmakers have resumed their efforts to establish a national mesothelioma registry to collect data on patients with the intentions of improving research and treatment.

On Nov. 5, two New York lawmakers reintroduced the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021 before Congress. The bill takes its name after a New York woman who died from the disease in 2014. This marks the fourth time the bill has been introduced to Congress since 2015. The bill is sponsored by Rep. John Katko (R-NY) and Rep. Antonio Delgado (D-NY).

Assist with treatment and research

If implemented, the registry with the Centers for Disease Control and Prevention (CDC) will collect information on U.S. patients who suffer from mesothelioma. The registry only would contain data voluntarily provided by patients.

Lawmakers, scientists and health care professionals hope that the information will enhance research efforts to learn more and treat this almost always fatal disease caused by exposure to asbestos.

Key aspects of the registry would help:

  • Determine the demographic factors tied to the disease.
  • Establish the prevalence of mesothelioma in the U.S.
  • Assist in research and treatment.
  • Improve the treatment standards and care of mesothelioma patients.
  • Distribute and share medical information among physicians.
  • Improve clinic-related care of patients.
  • Recognize the medical facilities that provide the best care.

Annually, physicians diagnose roughly 3,000 U.S. residents with mesothelioma. More than half of those diagnosed die within a year. Few live beyond five years.

Will lawmakers act this time?

Maybe this time, Congress will pass the legislation named after Spano, a woman who battled mesothelioma for four years. Spano’s family suffered the legacy of mesothelioma as she, her sister and father died from the disease. The source of their exposure? The asbestos fibers that Mary Jo’s father, Charles Lawyer, unknowingly brought home daily from work, where he was exposed to the deadly carcinogen.

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