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: 

1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the Firefighter Cancer Reg3 istry Act of 2018. 

4 SEC. 2. VOLUNTARY REGISTRY FOR FIREFIGHTER CANCER 

5 INCIDENCE. 

6 (a) IN GENERAL.—The Secretary of Health and 

7 Human Services (referred to in this section as the Sec8 retary), acting through the Director of the Centers for Dis9 ease Control and Prevention and in coordination with other 
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1 agencies as the Secretary determines appropriate, shall de2 velop and maintain, directly or through a grant or coopera3 tive agreement, a voluntary registry of firefighters (referred 

4 to in this section as the Firefighter Registry) to collect rel5 evant health and occupational information of such fire6 fighters for purposes of determining cancer incidence. 

7 (b) USE OF FIREFIGHTER REGISTRY.—The Firefighter 

8 Registry may be used for the following purposes: 

9 (1) To improve data collection and data coordi10 nation activities related to the nationwide monitoring 

11 of the incidence of cancer among firefighters. 

12 (2) To collect, consolidate, and maintain, con13 sistent with subsection (g), epidemiological informa14 tion and analyses related to cancer incidence and 

15 trends among firefighters 

16 (c) RELEVANT DATA.— 

17 (1) DATA COLLECTION.—In carrying out the vol18 untary data collection for purposes of inclusion under 

19 the Firefighter Registry, the Secretary may collect the 

20 following: 

21 (A) Information, as determined by the Sec22 retary under subsection (d)(1), of volunteer, 

23 paid-on-call, and career firefighters, independent 

24 of cancer status or diagnosis. 
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1 (B) Individual risk factors and occupa2 tional history of firefighters. 

3 (C) Information, if available, related to— 

4 (i) basic demographic information, in5 cluding— 

6 (I) the age of the firefighter in7 volved during the relevant dates of oc8 cupation as a firefighter; and 

9 (II) the age of cancer diagnosis; 

10 (ii) the status of the firefighter as ei11 ther volunteer, paid-on-call, or career fire12 fighter; 

13 (iii) the total number of years of occu14 pation as a firefighter and a detailing of 

15 additional employment experience, whether 

16 concurrent, before, or anytime thereafter; 

17 (iv)(I) the approximate number of fire 

18 incidents attended, including information 

19 related to the type of fire incidents and the 

20 role of the firefighter in responding to the 

21 incident; or 

22 (II) in the case of a firefighter for 

23 whom information on such number and 

24 type is unavailable, an estimate of such 
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1 number and type based on the method devel2 oped under subsection (d)(1)(D); and 

3 (v) other medical information and 

4 health history, including additional risk 

5 factors, as appropriate, and other informa6 tion relevant to a cancer incidence study of 

7 firefighters. 

8 (2) INFORMATION ON DIAGNOSES AND TREAT9 MENT.—In carrying out paragraph (1), with respect 

10 to diagnoses and treatment of firefighters with cancer, 

11 the Secretary shall, as appropriate, enable the Fire12 fighter Registry to electronically connect to State13 based cancer registries, for a purpose described by 

14 clause (vi) or (vii) of section 399B(c)(2)(D) of the 

15 Public Health Service Act (42 U.S.C. 280e(c)(2)(D)), 

16 to obtain— 

17 (A) date of diagnoses and source of informa18 tion; and 

19 (B) pathological data characterizing the 

20 cancer, including cancer site, state of disease 

21 (pursuant to Staging Guide), incidence, and 

22 type of treatment. 

23 (d) FIREFIGHTER REGISTRY COORDINATION STRAT24 EGY.— 
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1 (1) REQUIRED STRATEGY.—The Secretary shall, 

2 in consultation with the relevant stakeholders identi3 fied in subsection (e), including epidemiologists and 

4 pathologists, develop a strategy to coordinate data col5 lection activities, including within existing State reg6 istries, for inclusion in the Firefighter Registry estab7 lished under this Act. The strategy may include the 

8 following: 

9 (A) Increasing awareness of the Firefighter 

10 Registry and encouraging participation among 

11 volunteer, paid-on-call, and career firefighters. 

12 (B) Consideration of unique data collection 

13 needs that may arise to generate a statistically 

14 reliable representation of minority, female, and 

15 volunteer firefighters, including methods, as 

16 needed, to encourage participation from such 

17 populations. 

18 (C) Information on how the Secretary will 

19 store data described in subsection (c)(1) and pro20 vide electronic access to relevant health informa21 tion described in subsection (c)(2). 

22 (D) Working in consultation with the ex23 perts described in subsection (e), a reliable and 

24 standardized method for estimating the number 

25 of fire incidents attended by a firefighter as well 
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1 as the type of fire incident so attended in the 

2 case such firefighter is unable to provide such in3 formation. 

4 (2) REPORT TO CONGRESS.—The Secretary shall 

5 submit the strategy described in paragraph (1) to the 

6 Committee on Energy and Commerce of the House of 

7 Representatives and the Committee on Health, Edu8 cation, Labor, and Pensions of the Senate not later 

9 than 30 days after the date of the completion of the 

10 strategy. 

11 (3) GUIDANCE FOR INCLUSION AND MAINTE12 NANCE OF DATA ON FIREFIGHTERS.—The Secretary 

13 shall develop, in consultation with the stakeholders 

14 identified in subsection (e), State health agencies, 

15 State departments of homeland security, and volun16 teer, paid-on-call, combination, and career fire17 fighting agencies, a strategy for inclusion of fire18 fighters in the registry that are representative of the 

19 general population of firefighters, that outlines the fol20 lowing: 

21 (A) How new information about firefighters 

22 will be submitted to the Firefighter Registry for 

23 inclusion. 
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1 (B) How information about firefighters will 

2 be maintained and updated in the Firefighter 

3 Registry over time. 

4 (C) A method for estimating the number of 

5 fire incidents attended by a firefighter as well as 

6 the type of fire incident so attended in the case 

7 such firefighter is unable to provide such infor8 mation. 

9 (D) Further information, as deemed nec10 essary by the Secretary. 

11 (e) CONSULTATION AND REPORT.—The Secretary shall 

12 consult with non-Federal experts on the Firefighter Registry 

13 established under this section, and shall submit to the Com14 mittee on Health, Education, Labor, and Pensions of the 

15 Senate and the Committee on Energy and Commerce of the 

16 House of Representatives a report that includes, as appro17 priate, information on goals achieved and improvements 

18 needed to strengthen the Firefighter Registry. Such non19 Federal experts shall include the following: 

20 (1) Public health experts with experience in de21 veloping and maintaining cancer registries. 

22 (2) Epidemiologists with experience in studying 

23 cancer incidence. 

24 (3) Clinicians with experience in diagnosing and 

25 treating cancer incidence. 
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1 (4) Active and retired volunteer, paid-on-call, 

2 and career firefighters as well as relevant national 

3 fire and emergency response organizations. 

4 (f) RESEARCH AVAILABILITY.—Subject to subsection 

5 (g), the Secretary shall ensure that information and anal6 ysis in the Firefighter Registry are available, as appro7 priate, to the public, including researchers, firefighters, and 

8 national fire service organizations. 

9 (g) PRIVACY.—In carrying out this Act, the Secretary 

10 shall ensure that information in and analysis of the Fire11 fighter Registry are made available in a manner that, at 

12 a minimum, protects personal privacy to the extent re13 quired by applicable Federal and State privacy law. 

14 (h) AUTHORIZATION OF FUNDS.—To carry out this 

15 section, there are authorized to be appropriated $2,500,000 

16 for each of the fiscal years 2018 through 2022. 

Attest: 

Secretary. 

115TH CONGRESS 

2D SESSION H.R. 931 

AMENDMENT