In the Senate of the United States,
May 10, 2018.
Resolved, That the bill from the House of Representatives (H.R. 931) entitled “An Act to require the Secretary of Health and Human Services to develop a voluntary registry to collect data on cancer incidence among firefighters.”, do pass with the following
AMENDMENT:
SEC. 2. Voluntary registry for firefighter cancer incidence.
(a) In general.—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.
(b) Use of Firefighter Registry.—The Firefighter Registry may be used for the following purposes:
(c) Relevant data.—
(1) DATA COLLECTION.—In carrying out the voluntary data collection for purposes of inclusion under the Firefighter Registry, the Secretary may collect the following:
(A) Information, as determined by the Secretary under subsection (d)(1), of volunteer, paid-on-call, and career firefighters, independent of cancer status or diagnosis.
(C) Information, if available, related to—
(i) basic demographic information, including—
(iii) the total number of years of occupation as a firefighter and a detailing of additional employment experience, whether concurrent, before, or anytime thereafter;
(2) INFORMATION ON DIAGNOSES AND TREATMENT.—In carrying out paragraph (1), with respect to diagnoses and treatment of firefighters with cancer, the Secretary shall, as appropriate, enable the Firefighter Registry to electronically connect to State-based cancer registries, for a purpose described by clause (vi) or (vii) of section 399B(c)(2)(D) of the Public Health Service Act (42 U.S.C. 280e(c)(2)(D)), to obtain—
(d) Firefighter registry coordination strategy.—
(1) REQUIRED STRATEGY.—The Secretary shall, in consultation with the relevant stakeholders identified in subsection (e), including epidemiologists and pathologists, develop a strategy to coordinate data collection activities, including within existing State registries, for inclusion in the Firefighter Registry established under this Act. The strategy may include the following:
(A) Increasing awareness of the Firefighter Registry and encouraging participation among volunteer, paid-on-call, and career firefighters.
(B) 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.
(2) REPORT TO CONGRESS.—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.
(3) GUIDANCE FOR INCLUSION AND MAINTENANCE OF DATA ON FIREFIGHTERS.—The Secretary shall develop, in consultation with the stakeholders identified in subsection (e), State health agencies, State departments of homeland security, and volunteer, paid-on-call, combination, and career firefighting agencies, a strategy for inclusion of firefighters in the registry that are representative of the general population of firefighters, that outlines the following:
(A) How new information about firefighters will be submitted to the Firefighter Registry for inclusion.
(B) How information about firefighters will be maintained and updated in the Firefighter Registry over time.
(e) Consultation and report.—The Secretary shall consult with non-Federal experts on the Firefighter Registry established under this section, and shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report that includes, as appropriate, information on goals achieved and improvements needed to strengthen the Firefighter Registry. Such non-Federal experts shall include the following:
(f) Research availability.—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.
Attest:
Secretary
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