IIB 

115TH CONGRESS 

1ST SESSION H. R. 931 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 13, 2017 

Received; read twice and referred to the Committee on Health, Education, 

Labor, and Pensions 

AN ACT 

To require the Secretary of Health and Human Services 

to develop a voluntary registry to collect data on cancer 

incidence among firefighters. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Firefighter Cancer 

3 Registry Act of 2017’’. 

4 SEC. 2. POPULATION-BASED REGISTRY FOR FIREFIGHTER 

5 CANCER INCIDENCE. 

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

7 Human Services, acting through the Director of the Cen8 ters for Disease Control and Prevention, shall develop and 

9 maintain, directly or through a grant or cooperative agree10 ment, a voluntary registry of firefighters (referred to in 

11 this section as the ‘‘Firefighter Registry’’) to collect rel12 evant history and occupational information of such fire13 fighters that can be linked to available cancer registry 

14 data collected by existing State cancer registries. 

15 (b) USE OF FIREFIGHTER REGISTRY.—The Fire16 fighter Registry shall be used for the following purposes: 

17 (1) To establish and improve collection infra18 structure and activities related to the nationwide 

19 monitoring of the incidence of cancer among fire20 fighters. 

21 (2) To collect, consolidate, store, and make 

22 publicly available epidemiological information related 

23 to cancer incidence and trends among firefighters. 

24 (c) RELEVANT DATA.— 

25 (1) IN GENERAL.—In carrying out the vol26 untary data collection for purposes of inclusion 


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1 under the Firefighter Registry, the Secretary should 

2 seek to include the following information: 

3 (A) Identifiable information from a rep4 resentative sample size, as determined by the 

5 Secretary under subsection (d)(2)(A), of volun6 teer, paid-on-call, and career firefighters, inde7 pendent of cancer status or diagnosis. 

8 (B) With respect to individual risk factors 

9 and work history of firefighters, available infor10 mation on— 

11 (i) basic demographic information, in12 cluding the age of the firefighter involved; 

13 (ii) a listing of status of the fire14 fighter as either volunteer, paid-on-call, or 

15 career firefighter; 

16 (iii) the number of years on the job 

17 and a detailing of additional employment 

18 experience that was either performed con19 currently alongside firefighting service, be20 fore, or anytime thereafter; 

21 (iv)(I) a measure of the number of 

22 fire incidents attended as well as the type 

23 of fire incidents (such as residential house 

24 fire or commercial fire); or 


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1 (II) in the case of a firefighter for 

2 whom information on such number and 

3 type is not available, an estimate of such 

4 number and type based on the method de5 veloped under subsection (d)(2); 

6 (v) a list of additional risk factors, in7 cluding smoking or drug use, as deter8 mined relevant by the Secretary; and 

9 (vi) other physical examination and 

10 medical history information relevant to a 

11 cancer incidence study or general health of 

12 firefighters not available in existing cancer 

13 registries. 

14 (C) Any additional information that is 

15 deemed necessary by the Secretary. 

16 (2) DIAGNOSES AND TREATMENT.—In carrying 

17 out the data collection for purposes of inclusion 

18 under the Firefighter Registry, with respect to diag19 noses and treatment of firefighters diagnosed with 

20 cancer, the Secretary shall enable the Firefighter 

21 Registry to link to State-based cancer registries, for 

22 a purpose described by clause (vi) or (vii) of section 

23 399B(c)(2)(D) of the Public Health Service Act (42 

24 U.S.C. 280e(c)(2)(D)), to obtain information on— 


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1 (A) administrative information, including 

2 date of diagnoses and source of information; 

3 and 

4 (B) pathological data characterizing the 

5 cancer, including cancer site, state of disease 

6 (pursuant to Staging Guide), incidence, and 

7 type of treatment. 

8 (d) METHODS.— 

9 (1) IN GENERAL.—For the purposes described 

10 in subsection (b), the Secretary is authorized to in11 corporate questions into public health surveys, ques12 tionnaires, and other databases. 

13 (2) REQUIRED STRATEGY.—The Secretary shall 

14 develop a strategy, working in consultation with the 

15 stakeholders identified in subsection (e), to maximize 

16 participation in the Firefighter Registry established 

17 under this Act. At minimum, the strategy shall in18 clude the following: 

19 (A) Identified minimum participation tar20 gets for volunteer, paid-on-call, and career fire21 fighters. 

22 (B) A strategy for increasing awareness of 

23 the Firefighter Registry and maximizing par24 ticipation among volunteer, paid-on-call, and caVerDate Sep 11 2014 00:04 Sep 14, 2017 Jkt 069200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H931.RFS H931

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1 reer firefighters to meet minimum participation 

2 targets. 

3 (C) Additional steps that may be required 

4 to ensure the equitable representation of groups 

5 identified in paragraph (5). 

6 (D) Information on how the Secretary will 

7 store data described in subsection (c)(1) and 

8 provide links to relevant health information de9 scribed in subsection (c)(2). 

10 (E) Working in consultation with the ex11 perts described in subsection (e), a reliable and 

12 standardized method for estimating the number 

13 of fire incidents attended by a firefighter as 

14 well as the type of fire incident so attended in 

15 the case such firefighter is unable to provide 

16 such information. 

17 (3) REPORT TO CONGRESS.—The Secretary 

18 shall submit the strategy described in paragraph (2) 

19 to the Committee on Energy and Commerce of the 

20 House of Representatives and the Committee on 

21 Health, Education, Labor, and Pensions of the Sen22 ate not later than 30 days after the date of the com23 pletion of the strategy. 

24 (4) GUIDANCE FOR INCLUSION AND MAINTE25 NANCE OF DATA ON FIREFIGHTERS.—The Secretary 


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1 shall develop, in consultation with the stakeholders 

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

3 State departments of homeland security, and volun4 teer, paid-on-call, combination, and career fire5 fighting agencies, a strategy for inclusion of fire6 fighters in the registry that are representative of the 

7 general population of firefighters, that outlines the 

8 following: 

9 (A) How new information about fire10 fighters will be submitted to the Firefighter 

11 Registry for inclusion. 

12 (B) How information about firefighters will 

13 be maintained and updated in the Firefighter 

14 Registry over time. 

15 (C) A method for estimating the number of 

16 fire incidents attended by a firefighter as well 

17 as the type of fire incident so attended in the 

18 case such firefighter is unable to provide such 

19 information. 

20 (D) Further information, as deemed nec21 essary by the Secretary. 

22 (5) ENSURING REPRESENTATION OF UNDER23 REPRESENTED GROUPS IN REGISTRY.—In carrying 

24 out this section, the Secretary shall take such meas25 ures as the Secretary deems appropriate to encourVerDate Sep 11 2014 00:04 Sep 14, 2017 Jkt 069200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H931.RFS H931

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1 age the inclusion of data on minority, female, and 

2 volunteer firefighters in the Firefighter Registry es3 tablished under this section. 

4 (e) CONSULTATION.—The Secretary shall, on a reg5 ular basis, seek feedback regarding the utility of the Fire6 fighter Registry established under this section and ways 

7 the Firefighter Registry can be improved from non-Fed8 eral experts in the following areas: 

9 (1) Public health experts with experience in de10 veloping and maintaining cancer registries. 

11 (2) Epidemiologists with experience in studying 

12 cancer incidence. 

13 (3) Clinicians with experience in diagnosing and 

14 treating cancer incidence. 

15 (4) Active and retired volunteer, paid-on-call, 

16 and career firefighters as well as relevant national 

17 fire and emergency response organizations. 

18 (f) RESEARCH AVAILABILITY.—The Secretary shall 

19 develop and make public a process for de-identifying data 

20 from the Firefighter Registry and making such data avail21 able without a fee for research or other purposes. Such 

22 process shall provide that such data shall be made avail23 able for such research purposes only if there is an agree24 ment to make findings, journal articles, or other print or 

25 web-based publications derived from such research public 


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1 or available to the relevant stakeholders identified in sub2 section (e). 

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

4 shall apply to the Firefighter Registry developed under 

5 subsection (a) data security provisions and privacy stand6 ards that comply with the best practices of the Centers 

7 for Disease Control and Prevention and provide for data 

8 privacy and security standards similar to those in the 

9 HIPAA privacy regulation, as defined in section 

10 1180(b)(3) of the Social Security Act (42 U.S.C. 1320d– 

11 9(b)(3)). 

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

13 section, there are authorized to be appropriated 

14 $2,000,000 for each of the fiscal years 2018 through 

15 2022. 

16 SEC. 3. CUT-GO COMPLIANCE. 

17 Subsection (f) of section 319D of the Public Health 

18 Service Act (42 U.S.C. 247d–4) is amended by striking 

19 ‘‘through 2018’’ and inserting ‘‘through 2017, and 

20 $128,300,000 for fiscal year 2018’’. 

Passed the House of Representatives September 12, 

2017. 

Attest: KAREN L. HAAS, 

Clerk. 


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