42 U.S.C. § 280e–5 — Voluntary registry for firefighter cancer incidence

(a) In general. The Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention and coordinating with other agencies as appropriate, must develop and maintain — directly, or through a grant or cooperative agreement — a voluntary registry of firefighters (the "Firefighter Registry"). It collects relevant health and job information about firefighters, in order to figure out how much cancer firefighters get. (b) Use of Firefighter Registry. The Firefighter Registry may be used to: (1) improve data collection and coordination for nationwide monitoring of cancer rates among firefighters; and (2) collect, combine, and maintain — consistent with the privacy rule in subsection (g) — epidemiological information and analysis about cancer rates and trends among firefighters. (c) Relevant data. (1) Data collection: for the voluntary registry, the Secretary may collect (A) information about volunteer, paid-on-call, and career firefighters, regardless of whether they have cancer; (B) individual risk factors and job history of firefighters; and (C) other available information, including (i) basic facts such as the firefighter's age during their firefighting years and their age at cancer diagnosis, (ii) whether the firefighter was volunteer, paid-on-call, or career, (iii) total years worked as a firefighter and other jobs held before, during, or afterward, (iv) roughly how many fire incidents the firefighter responded to, including type and role — or, if that number and type are not known, an estimate made using the method developed under subsection (d)(1)(D) — and (v) other medical and health information relevant to a cancer study of firefighters. (2) Information on diagnoses and treatment: for cancer diagnosis and treatment data, the Secretary must, as appropriate, allow the Firefighter Registry to connect electronically to state cancer registries — for purposes described in section 280e(c)(2)(D)(vi) or (vii) of this title — to obtain (A) the diagnosis date and where that information came from, and (B) medical details on the cancer, including its site, its stage, how common it is, and what treatment was given. (d) Firefighter Registry coordination strategy. (1) Required strategy: the Secretary, consulting with the stakeholders named in subsection (e), including epidemiologists and pathologists, must develop a strategy to coordinate data collection — including within existing state registries — for the Firefighter Registry. The strategy may cover: (A) raising awareness of the Registry and encouraging volunteer, paid-on-call, and career firefighters to take part; (B) planning for the unique data needs of getting a statistically reliable sample of minority, female, and volunteer firefighters, including outreach methods; (C) how the Secretary will store the subsection (c)(1) data and give electronic access to the subsection (c)(2) health information; and (D) working with the subsection (e) experts to build a reliable, standardized way to estimate a firefighter's fire-incident history when the firefighter cannot provide it. (2) Report to Congress: the Secretary must send this strategy to the House Committee on Energy and Commerce and the Senate Committee on Health, Education, Labor, and Pensions within 30 days of completing it. (3) Guidance for inclusion and maintenance of data: working with the subsection (e) stakeholders, state health agencies, state homeland-security departments, and firefighting agencies, the Secretary must build a strategy — representative of firefighters generally — for including firefighters in the registry, covering (A) how new firefighter information will be submitted, (B) how that information will be kept up to date over time, (C) the method for estimating fire-incident history described above, and (D) other information the Secretary decides is necessary. (e) Consultation and report. The Secretary must consult non-federal experts on the Firefighter Registry, and must submit to the same two congressional committees a report on goals achieved and improvements needed to strengthen the Registry. These non-federal experts must include: (1) public health experts experienced in developing and maintaining cancer registries; (2) epidemiologists experienced in studying cancer rates; (3) clinicians experienced in diagnosing and treating cancer; and (4) active and retired volunteer, paid-on-call, and career firefighters, along with relevant national fire and emergency-response organizations. (f) Research availability. Subject to subsection (g), the Secretary must make Firefighter Registry information and analysis available, as appropriate, to the public, including researchers, firefighters, and national fire service organizations. (g) Privacy. The Secretary must make sure Firefighter Registry information and analysis are shared in a way that, at minimum, protects personal privacy to the extent required by applicable federal and state privacy law. (h) Authorization of funds. Congress authorized $5,500,000 for each of fiscal years 2024 through 2028 to carry out this section.