[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 931 Engrossed Amendment Senate (EAS)]

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                  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:

            Strike all after the enacting clause and insert the 
      following:

SECTION 1. SHORT TITLE.

    This Act may be cited as the Firefighter Cancer Registry Act of 
2018.

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:
            (1) To improve data collection and data coordination 
        activities related to the nationwide monitoring of the 
        incidence of cancer among firefighters.
            (2) To collect, consolidate, and maintain, consistent with 
        subsection (g), epidemiological information and analyses 
        related to cancer incidence and trends among firefighters
    (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.
                    (B) Individual risk factors and occupational 
                history of firefighters.
                    (C) Information, if available, related to--
                            (i) basic demographic information, 
                        including--
                                    (I) the age of the firefighter 
                                involved during the relevant dates of 
                                occupation as a firefighter; and
                                    (II) the age of cancer diagnosis;
                            (ii) the status of the firefighter as 
                        either volunteer, paid-on-call, or career 
                        firefighter;
                            (iii) the total number of years of 
                        occupation as a firefighter and a detailing of 
                        additional employment experience, whether 
                        concurrent, before, or anytime thereafter;
                            (iv)(I) 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
                            (II) 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
                            (v) other medical information and health 
                        history, including additional risk factors, as 
                        appropriate, and other information relevant to 
                        a cancer incidence study of firefighters.
            (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--
                    (A) date of diagnoses and source of information; 
                and
                    (B) pathological data characterizing the cancer, 
                including cancer site, state of disease (pursuant to 
                Staging Guide), incidence, and type of treatment.
    (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.
                    (C) 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).
                    (D) 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.
            (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.
                    (C) 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.
                    (D) Further information, as deemed necessary by the 
                Secretary.
    (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:
            (1) Public health experts with experience in developing and 
        maintaining cancer registries.
            (2) Epidemiologists with experience in studying cancer 
        incidence.
            (3) Clinicians with experience in diagnosing and treating 
        cancer incidence.
            (4) Active and retired volunteer, paid-on-call, and career 
        firefighters as well as relevant national fire and emergency 
        response organizations.
    (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.
    (g) Privacy.--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.
    (h) Authorization of Funds.--To carry out this section, there are 
authorized to be appropriated $2,500,000 for each of the fiscal years 
2018 through 2022.

            Attest:

                                                             Secretary.
115th CONGRESS

  2d Session

                                H.R. 931

_______________________________________________________________________

                               AMENDMENT