Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021
The source supplies the latest action, but no lifecycle stage.
Latest action (5 Nov 2021): Referred to the Subcommittee on Health.
What this bill does
H.R. 5869, the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021, would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Agency for Toxic Substances and Disease Registry, to create a national patient registry for mesothelioma. The registry would track disease incidence and prevalence, treatment outcomes, patient longevity, and hospital-level treatment data, and would collect demographic and risk-factor information such as age, race, sex, geography, family history, and environmental or occupational exposures. Non-identifying data would be made public to support research. The Secretary would consult outside experts, coordinate with agencies like NIH, FDA, CMS, VA, and DOD, and apply privacy protections at least as strong as HIPAA.
The bill primarily affects mesothelioma patients, researchers, clinicians, and federal health agencies, by creating a standardized data source intended to improve understanding of the disease's causes, progression, and treatment. It would also require HHS to report to Congress on the registry's findings and scope within 18 months, and on its implementation within four years of enactment.
The bill was introduced in the House on November 4, 2021, by Rep. John Katko and referred to the Committee on Energy and Commerce. It did not receive a vote and did not become law during the 117th Congress.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Official summary
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.
Timeline
5 Nov 2021
Referred to the Subcommittee on Health.
Common questions
- What does H.R. 5869 do?
- H.R. 5869, the Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021, would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Agency for Toxic Substances and Disease Registry, to create a national patient registry for mesothelioma. The registry would track disease incidence and prevalence, treatment outcomes, patient longevity, and hospital-level treatment data, and would collect demographic and risk-factor information such as age, race, sex, geography, family history, and environmental or occupational exposures. Non-identifying data would be made public to support research. The Secretary would consult outside experts, coordinate with agencies like NIH, FDA, CMS, VA, and DOD, and apply privacy protections at least as strong as HIPAA. The bill primarily affects mesothelioma patients, researchers, clinicians, and federal health agencies, by creating a standardized data source intended to improve understanding of the disease's causes, progression, and treatment. It would also require HHS to report to Congress on the registry's findings and scope within 18 months, and on its implementation within four years of enactment. The bill was introduced in the House on November 4, 2021, by Rep. John Katko and referred to the Committee on Energy and Commerce. It did not receive a vote and did not become law during the 117th Congress.
- Has H.R. 5869 become law?
- The source does not supply a confirmed lifecycle stage for H.R. 5869. Check the latest action and official source below.
- Who sponsored H.R. 5869?
- H.R. 5869 was sponsored by Rep. Katko, John [R-NY-24] (R-NY), with 3 cosponsors.
- What's the latest action on H.R. 5869?
- Referred to the Subcommittee on Health. (5 Nov 2021).
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