[Congressional Record Volume 164, Number 76 (Thursday, May 10, 2018)]
[Senate]
[Pages S2629-S2630]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                           TEXT OF AMENDMENTS

  SA 2242. Mr. PORTMAN (for Mr. Alexander) proposed an amendment to the 
bill H.R. 931, to require the Secretary of Health and Human Services to 
develop a voluntary registry to collect data on cancer incidence among 
firefighters; as follows:

       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;

[[Page S2630]]

       (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.

                          ____________________