Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021

Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021

This bill requires the Agency for Toxic Substances and Disease Registry, which is part of the Department of Health and Human Services, to establish a mesothelioma patient registry. (Mesothelioma is a cancer of the tissue lining the lung, chest, and abdomen areas and is generally associated with asbestos exposure.) The registry must include information relating to the incidence and prevalence of mesothelioma in the United States, including treatment outcomes and demographics.

Bill 117 HR 5869, also known as the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021, aims to establish a national registry for individuals diagnosed with mesothelioma, a rare and aggressive form of cancer often caused by exposure to asbestos. The registry would be named after Mary Jo Lawyer Spano, a mesothelioma patient and advocate who passed away in 2020.

The purpose of the registry is to collect and maintain data on mesothelioma patients in order to improve understanding of the disease, track trends in diagnosis and treatment, and ultimately improve patient outcomes. The registry would be overseen by the Centers for Disease Control and Prevention (CDC) and would include information such as patient demographics, medical history, and exposure to asbestos.

The bill also includes provisions to ensure the privacy and confidentiality of patient information, as well as requirements for reporting data to the registry. Additionally, the CDC would be required to periodically analyze and report on the data collected in the registry to Congress and the public. Overall, the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021 seeks to improve research and awareness of mesothelioma, ultimately leading to better treatment options and outcomes for patients affected by this devastating disease.