Title: Firefighter Cancer Registry Act of 2018
Policy area: Health

Summary:
Firefighter Cancer Registry Act of 2017
This bill requires the Centers for Disease Control and Prevention (CDC) to develop and maintain a voluntary registry of firefighters to collect history and occupational information that can be linked to existing data in state cancer registries. The registry must be used to improve monitoring of cancer among firefighters and to collect and publish epidemiological information regarding cancer among firefighters. The CDC should seek to include specified information in the registry, including the number and type of fire incidents attended by an individual.
To collect information for the registry, the CDC may incorporate questions into existing public health surveys, questionnaires, and other databases.
The CDC must: (1) develop a strategy to maximize participation in the registry; (2) develop guidance for states and firefighting agencies regarding the registry; (3) encourage inclusion in the registry of data on minority, female, and volunteer firefighters; and (4) seek feedback on the registry from nonfederal experts.

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

<DOC>






115th CONGRESS
  1st 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, and Mr. Tester) introduced the 
 following bill; which was read twice and referred to the Committee on 
                 Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 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,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Firefighter Cancer Registry Act of 
2017''.

SEC. 2. PATIENT 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, 
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.
    (b) Use of Firefighter Registry.--The Firefighter Registry shall be 
used for the following purposes:
            (1) To establish and improve collection infrastructure and 
        activities related to the nationwide monitoring of the 
        incidence of cancer among firefighters.
            (2) To collect, consolidate, store, and make publicly 
        available epidemiological information related to cancer 
        incidence and trends among firefighters.
    (c) Relevant Data.--
            (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:
                    (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.
                    (B) With respect to individual risk factors and 
                work history of firefighters, available information 
                on--
                            (i) basic demographic information, 
                        including the age of the firefighter involved;
                            (ii) a listing of status of the firefighter 
                        as either volunteer, paid-on-call, or career 
                        firefighter;
                            (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;
                            (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
                            (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);
                            (v) a list of additional risk factors, 
                        including smoking or drug use, as determined 
                        relevant by the Secretary; and
                            (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.
                    (C) Any additional information that is deemed 
                necessary by the Secretary.
            (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--
                    (A) administrative information, including 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) Methods.--
            (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.
            (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:
                    (A) Identified minimum participation targets for 
                volunteer, paid-on-call, and career firefighters.
                    (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.
                    (C) Additional steps that may be required to ensure 
                the equitable representation of groups identified in 
                paragraph (5).
                    (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).
                    (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.
            (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.
            (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:
                    (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.
            (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.
    (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:
            (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.--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).
    (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)).
    (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.
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