[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 382 Reported in Senate (RS)]

<DOC>





                                                       Calendar No. 386
115th CONGRESS
  2d Session
                                 S. 382

  To require the Secretary of Health and Human Services to develop a 
     voluntary registry to collect data on cancer incidence among 
                             firefighters.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 15, 2017

Mr. Menendez (for himself, Ms. Murkowski, Mr. Rubio, Ms. Klobuchar, Mr. 
   Markey, Mr. Blumenthal, Mr. Daines, Mr. Booker, Mr. Franken, Mr. 
   Schumer, Mr. McCain, Mrs. Gillibrand, Mr. Tester, Mr. Nelson, Mr. 
Sanders, Ms. Baldwin, Ms. Collins, Mr. Brown, Ms. Stabenow, Mr. Coons, 
Mr. Donnelly, Mrs. McCaskill, Mr. Murphy, Ms. Hassan, Mr. Merkley, Mr. 
Whitehouse, Mr. Van Hollen, Ms. Cortez Masto, Ms. Cantwell, Mr. Cardin, 
Mr. Peters, Mrs. Fischer, Mr. Kaine, Mr. Reed, Mr. Durbin, Ms. Warren, 
 Mr. Carper, Mr. Schatz, Mr. Heinrich, Ms. Duckworth, Mrs. Feinstein, 
 Mrs. Shaheen, Mr. Blunt, Mr. King, Ms. Hirono, Ms. Smith, Mr. Casey, 
Mr. Young, and Mr. Leahy) introduced the following bill; which was read 
 twice and referred to the Committee on Health, Education, Labor, and 
                                Pensions

                             April 25, 2018

              Reported by Mr. Alexander, with an amendment
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]

_______________________________________________________________________

                                 A BILL


 
  To require the Secretary of Health and Human Services to develop a 
     voluntary registry to collect data on cancer incidence among 
                             firefighters.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

<DELETED>SECTION 1. SHORT TITLE.</DELETED>

<DELETED>    This Act may be cited as the ``Firefighter Cancer Registry 
Act of 2017''.</DELETED>

<DELETED>SEC. 2. PATIENT REGISTRY FOR FIREFIGHTER CANCER 
              INCIDENCE.</DELETED>

<DELETED>    (a) In General.--The Secretary of Health and Human 
Services, acting through the Director of the Centers for Disease 
Control and Prevention, 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 history and occupational information of such 
firefighters that can be linked to available cancer registry data 
collected by existing State cancer registries.</DELETED>
<DELETED>    (b) Use of Firefighter Registry.--The Firefighter Registry 
shall be used for the following purposes:</DELETED>
        <DELETED>    (1) To establish and improve collection 
        infrastructure and activities related to the nationwide 
        monitoring of the incidence of cancer among 
        firefighters.</DELETED>
        <DELETED>    (2) To collect, consolidate, store, and make 
        publicly available epidemiological information related to 
        cancer incidence and trends among firefighters.</DELETED>
<DELETED>    (c) Relevant Data.--</DELETED>
        <DELETED>    (1) In general.--In carrying out the voluntary 
        data collection for purposes of inclusion under the Firefighter 
        Registry, the Secretary should seek to include the following 
        information:</DELETED>
                <DELETED>    (A) Identifiable information from a 
                representative sample size, as determined by the 
                Secretary under subsection (d)(2)(A), of volunteer, 
                paid-on-call, and career firefighters, independent of 
                cancer status or diagnosis.</DELETED>
                <DELETED>    (B) With respect to individual risk 
                factors and work history of firefighters, available 
                information on--</DELETED>
                        <DELETED>    (i) basic demographic information, 
                        including the age of the firefighter 
                        involved;</DELETED>
                        <DELETED>    (ii) a listing of status of the 
                        firefighter as either volunteer, paid-on-call, 
                        or career firefighter;</DELETED>
                        <DELETED>    (iii) the number of years on the 
                        job and a detailing of additional employment 
                        experience that was either performed 
                        concurrently alongside firefighting service, 
                        before, or anytime thereafter;</DELETED>
                        <DELETED>    (iv)(I) a measure of the number of 
                        fire incidents attended as well as the type of 
                        fire incidents (such as residential house fire 
                        or commercial fire); or</DELETED>
                        <DELETED>    (II) in the case of a firefighter 
                        who is unable to provide information on such 
                        number and type, an estimate of such number and 
                        type based on the method developed under 
                        subsection (d)(2);</DELETED>
                        <DELETED>    (v) a list of additional risk 
                        factors, including smoking or drug use, as 
                        determined relevant by the Secretary; 
                        and</DELETED>
                        <DELETED>    (vi) Other physical examination 
                        and medical history information relevant to a 
                        cancer incidence study or general health of 
                        firefighters not available in existing cancer 
                        registries.</DELETED>
                <DELETED>    (C) Any additional information that is 
                deemed necessary by the Secretary.</DELETED>
        <DELETED>    (2) Diagnoses and treatment.--In carrying out the 
        data collection for purposes of inclusion under the Firefighter 
        Registry, with respect to diagnoses and treatment of 
        firefighters diagnosed with cancer, the Secretary shall enable 
        the Firefighter Registry to link 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 information on--</DELETED>
                <DELETED>    (A) administrative information, including 
                date of diagnoses and source of information; 
                and</DELETED>
                <DELETED>    (B) pathological data characterizing the 
                cancer, including cancer site, state of disease 
                (pursuant to Staging Guide), incidence, and type of 
                treatment.</DELETED>
<DELETED>    (d) Methods.--</DELETED>
        <DELETED>    (1) In general.--For the purposes described in 
        subsection (b), the Secretary is authorized to incorporate 
        questions into public health surveys, questionnaires, and other 
        databases.</DELETED>
        <DELETED>    (2) Required strategy.--The Secretary shall 
        develop a strategy, working in consultation with the 
        stakeholders identified in subsection (e), to maximize 
        participation in the Firefighter Registry established under 
        this Act. At minimum, the strategy shall include the 
        following:</DELETED>
                <DELETED>    (A) Identified minimum participation 
                targets for volunteer, paid-on-call, and career 
                firefighters.</DELETED>
                <DELETED>    (B) A strategy for increasing awareness of 
                the Firefighter Registry and maximizing participation 
                among volunteer, paid-on-call, and career firefighters 
                to meet minimum participation targets.</DELETED>
                <DELETED>    (C) Additional steps that may be required 
                to ensure the equitable representation of groups 
                identified in paragraph (5).</DELETED>
                <DELETED>    (D) Information on how the Secretary will 
                store data described in subsection (c)(1) and provide 
                links to relevant health information described in 
                subsection (c)(2).</DELETED>
                <DELETED>    (E) 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.</DELETED>
        <DELETED>    (3) Report to congress.--The Secretary shall 
        submit the strategy described in paragraph (2) 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.</DELETED>
        <DELETED>    (4) Guidance for inclusion and maintenance of data 
        on firefighters.--The Secretary shall develop, in consultation 
        with the stakeholders identified in subsection (e), and 
        disseminate guidance to State health agencies, State 
        departments of homeland security, and volunteer, paid-on-call, 
        combination, and career firefighting agencies that outlines the 
        following:</DELETED>
                <DELETED>    (A) How new information about firefighters 
                will be submitted to the Firefighter Registry for 
                inclusion.</DELETED>
                <DELETED>    (B) How information about firefighters 
                will be maintained and updated in the Firefighter 
                Registry over time.</DELETED>
                <DELETED>    (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.</DELETED>
                <DELETED>    (D) Further information, as deemed 
                necessary by the Secretary.</DELETED>
        <DELETED>    (5) Ensuring representation of underrepresented 
        groups in registry.--In carrying out this section, the 
        Secretary shall take such measures as the Secretary deems 
        appropriate to encourage the inclusion of data on minority, 
        female, and volunteer firefighters in the Firefighter Registry 
        established under this section.</DELETED>
<DELETED>    (e) Consultation.--The Secretary shall, on a regular 
basis, seek feedback regarding the utility of the Firefighter Registry 
established under this section and ways the Firefighter Registry can be 
improved from non-Federal experts in the following areas:</DELETED>
        <DELETED>    (1) Public health experts with experience in 
        developing and maintaining cancer registries.</DELETED>
        <DELETED>    (2) Epidemiologists with experience in studying 
        cancer incidence.</DELETED>
        <DELETED>    (3) Clinicians with experience in diagnosing and 
        treating cancer incidence.</DELETED>
        <DELETED>    (4) Active and retired volunteer, paid-on-call, 
        and career firefighters as well as relevant national fire and 
        emergency response organizations.</DELETED>
<DELETED>    (f) Research Availability.--The Secretary shall develop 
and make public a process for de-identifying data from the Firefighter 
Registry and making such data available without a fee for research or 
other purposes. Such process shall provide that such data shall be made 
available for such research purposes only if there is an agreement to 
make findings, journal articles, or other print or web-based 
publications derived from such research public or available to the 
relevant stakeholders identified in subsection (e).</DELETED>
<DELETED>    (g) Privacy.--In carrying out this Act, the Secretary 
shall apply to the Firefighter Registry developed under subsection (a) 
data security provisions and privacy standards that comply with the 
best practices of the Centers for Disease Control and Prevention and 
provide for data privacy and security standards similar to those in the 
HIPAA privacy regulation, as defined in section 1180(b)(3) of the 
Social Security Act (42 U.S.C. 1320d-9(b)(3)).</DELETED>
<DELETED>    (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.</DELETED>

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, such as medical 
        professionals and public health experts with experience 
        developing and maintaining cancer registries, studying cancer 
        incidence, or diagnosing and treating cancer, 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 and firefighters.
    (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.
                                                       Calendar No. 386

115th CONGRESS

  2d Session

                                 S. 382

_______________________________________________________________________

                                 A BILL

  To require the Secretary of Health and Human Services to develop a 
     voluntary registry to collect data on cancer incidence among 
                             firefighters.

_______________________________________________________________________

                             April 25, 2018

                       Reported with an amendment