42 U.S.C. § 280e: Voluntary registry for firefighter cancer incidence

The Secretary of Health and Human Services (referred to in this section as the Secretary), acting through the Director of the Centers for Disease Control and Prevention and in coordination with other agencies as the Secretary determines appropriate, shall develop and maintain, directly or through a grant or cooperative agreement, a voluntary registry of firefighters (referred to in this section as the Firefighter Registry) to collect relevant health and occupational information of such firefighters for purposes of determining cancer incidence. To improve data collection and data coordination activities related to the nationwide monitoring of the incidence of cancer among firefighters. To collect, consolidate, and maintain, consistent with subsection (g), epidemiological information and analyses related to cancer incidence and trends among firefighters 1 1 So in original. Probably should be followed by a period. Information, as determined by the Secretary under subsection (d)(1), of volunteer, paid-on-call, and career firefighters, independent of cancer status or diagnosis. Individual risk factors and occupational history of firefighters. the age of the firefighter involved during the relevant dates of occupation as a firefighter; and the age of cancer diagnosis; the status of the firefighter as either volunteer, paid-on-call, or career firefighter; the total number of years of occupation as a firefighter and a detailing of additional employment experience, whether concurrent, before, or anytime thereafter; the approximate number of fire incidents attended, including information related to the type of fire incidents and the role of the firefighter in responding to the incident; or in the case of a firefighter for whom information on such number and type is unavailable, an estimate of such number and type based on the method developed under subsection (d)(1)(D); and other medical information and health history, including additional risk factors, as appropriate, and other information relevant to a cancer incidence study of firefighters. date of diagnoses and source of information; and pathological data characterizing the cancer, including cancer site, state of disease (pursuant to Staging Guide), incidence, and type of treatment. Increasing awareness of the Firefighter Registry and encouraging participation among volunteer, paid-on-call, and career firefighters. Consideration of unique data collection needs that may arise to generate a statistically reliable representation of minority, female, and volunteer firefighters, including methods, as needed, to encourage participation from such populations. Information on how the Secretary will store data described in subsection (c)(1) and provide electronic access to relevant health information described in subsection (c)(2). Working in consultation with the experts described in subsection (e), a reliable and standardized method for estimating the number of fire incidents attended by a firefighter as well as the type of fire incident so attended in the case such firefighter is unable to provide such information. The Secretary shall submit the strategy described in paragraph (1) to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate not later than 30 days after the date of the completion of the strategy. How new information about firefighters will be submitted to the Firefighter Registry for inclusion. How information about firefighters will be maintained and updated in the Firefighter Registry over time. A method for estimating the number of fire incidents attended by a firefighter as well as the type of fire incident so attended in the case such firefighter is unable to provide such information. Further information, as deemed necessary by the Secretary. Public health experts with experience in developing and maintaining cancer registries. Epidemiologists with experience in studying cancer incidence. Clinicians with experience in diagnosing and treating cancer incidence. Active and retired volunteer, paid-on-call, and career firefighters as well as relevant national fire and emergency response organizations. Subject to subsection (g), the Secretary shall ensure that information and analysis in the Firefighter Registry are available, as appropriate, to the public, including researchers, firefighters, and national fire service organizations. In carrying out this Act, the Secretary shall ensure that information in and analysis of the Firefighter Registry are made available in a manner that, at a minimum, protects personal privacy to the extent required by applicable Federal and State privacy law. To carry out this section, there are authorized to be appropriated $5,500,000 for each of fiscal years 2024 through 2028.