I 

115TH CONGRESS 

1ST SESSION 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. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 7, 2017 

Mr. COLLINS of New York (for himself, Mr. PASCRELL, Mr. AMODEI, Mr. 

BARLETTA, Mr. BARR, Mr. BLUMENAUER, Ms. BONAMICI, Mr. BOST, 

Mrs. BROOKS of Indiana, Ms. BROWNLEY of California, Mrs. BUSTOS, 

Mrs. COMSTOCK, Mr. CONNOLLY, Mr. DEFAZIO, Ms. DEGETTE, Mr. 

DONOVAN, Mr. ELLISON, Mr. ENGEL, Ms. ESTY, Mr. FOSTER, Mr. FASO, 

Mr. GARAMENDI, Mr. GRIJALVA, Mr. HECK, Mr. JOYCE of Ohio, Ms. 

KAPTUR, Mr. KATKO, Mr. KILMER, Mr. KIND, Mr. KING of New York, 

Mr. KNIGHT, Ms. KUSTER of New Hampshire, Mr. LEVIN, Mr. LIPINSKI, 

Mr. LOBIONDO, Mr. LOEBSACK, Mrs. CAROLYN B. MALONEY of New 

York, Ms. MCCOLLUM, Mr. MCGOVERN, Mr. MEEHAN, Mr. MOULTON, 

Mr. NADLER, Mr. NOLAN, Mr. NORCROSS, Ms. NORTON, Mr. PAYNE, Mr. 

PERLMUTTER, Mr. PETERSON, Ms. PINGREE, Mr. POLIQUIN, Mr. 

RENACCI, Miss RICE of New York, Mr. ROGERS of Kentucky, Mr. RYAN

of Ohio, Mr. SERRANO, Ms. SHEA-PORTER, Mr. SHUSTER, Ms. SINEMA, 

Mr. SIRES, Ms. SLAUGHTER, Mr. SMITH of New Jersey, Mr. SWALWELL

of California, Ms. TENNEY, Mr. TONKO, Ms. TSONGAS, Mr. VALADAO, 

Mrs. WALORSKI, Mr. WALZ, Ms. WASSERMAN SCHULTZ, Mrs. WATSON

COLEMAN, Mr. YARMUTH, Mr. YOUNG of Alaska, Mr. ZELDIN, Mr. 

LANCE, Mr. SMITH of Washington, Mr. SEAN PATRICK MALONEY of New 

York, Mr. QUIGLEY, Mr. GOTTHEIMER, and Ms. STEFANIK) introduced 

the following bill; which was referred to the Committee on Energy and 

Commerce 

A BILL 

To require the Secretary of Health and Human Services 

to develop a voluntary registry to collect data on cancer 

incidence among firefighters. 


asabaliauskas on DSK3SPTVN1PROD with BILLS
2 

•HR 931 IH

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

3 SECTION 1. SHORT TITLE. 

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

5 Registry Act of 2017’’. 

6 SEC. 2. PATIENT REGISTRY FOR FIREFIGHTER CANCER IN7 CIDENCE. 

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

9 Human Services, acting through the Director of the Cen10 ters for Disease Control and Prevention, shall develop and 

11 maintain, directly or through a grant or cooperative agree12 ment, a voluntary registry of firefighters (referred to in 

13 this section as the ‘‘Firefighter Registry’’) to collect rel14 evant history and occupational information of such fire15 fighters that can be linked to available cancer registry 

16 data collected by existing State cancer registries. 

17 (b) USE OF FIREFIGHTER REGISTRY.—The Fire18 fighter Registry shall be used for the following purposes: 

19 (1) To establish and improve collection infra20 structure and activities related to the nationwide 

21 monitoring of the incidence of cancer among fire22 fighters. 

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

24 publicly available epidemiological information related 

25 to cancer incidence and trends among firefighters. 


asabaliauskas on DSK3SPTVN1PROD with BILLS
3 

•HR 931 IH

1 (c) RELEVANT DATA.— 

2 (1) IN GENERAL.—In carrying out the vol3 untary data collection for purposes of inclusion 

4 under the Firefighter Registry, the Secretary should 

5 seek to include the following information: 

6 (A) Identifiable information from a rep7 resentative sample size, as determined by the 

8 Secretary under subsection (d)(2)(A), of volun9 teer, paid-on-call, and career firefighters, inde10 pendent of cancer status or diagnosis. 

11 (B) With respect to individual risk factors 

12 and work history of firefighters, available infor13 mation on— 

14 (i) basic demographic information, in15 cluding the age of the firefighter involved; 

16 (ii) a listing of status of the fire17 fighter as either volunteer, paid-on-call, or 

18 career firefighter; 

19 (iii) the number of years on the job 

20 and a detailing of additional employment 

21 experience that was either performed con22 currently alongside firefighting service, be23 fore, or anytime thereafter; 

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

25 fire incidents attended as well as the type 


asabaliauskas on DSK3SPTVN1PROD with BILLS
4 

•HR 931 IH

1 of fire incidents (such as residential house 

2 fire or commercial fire); or 

3 (II) in the case of a firefighter who is 

4 unable to provide information on such 

5 number and type, an estimate of such 

6 number and type based on the method de7 veloped under subsection (d)(2); 

8 (v) a list of additional risk factors, in9 cluding smoking or drug use, as deter10 mined relevant by the Secretary; and 

11 (vi) other physical examination and 

12 medical history information relevant to a 

13 cancer incidence study or general health of 

14 firefighters not available in existing cancer 

15 registries. 

16 (C) Any additional information that is 

17 deemed necessary by the Secretary. 

18 (2) DIAGNOSES AND TREATMENT.—In carrying 

19 out the data collection for purposes of inclusion 

20 under the Firefighter Registry, with respect to diag21 noses and treatment of firefighters diagnosed with 

22 cancer, the Secretary shall enable the Firefighter 

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

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


asabaliauskas on DSK3SPTVN1PROD with BILLS
5 

•HR 931 IH

1 399B(c)(2)(D) of the Public Health Service Act (42 

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

3 (A) administrative information, including 

4 date of diagnoses and source of information; 

5 and 

6 (B) pathological data characterizing the 

7 cancer, including cancer site, state of disease 

8 (pursuant to Staging Guide), incidence, and 

9 type of treatment. 

10 (d) METHODS.— 

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

12 in subsection (b), the Secretary is authorized to in13 corporate questions into public health surveys, ques14 tionnaires, and other databases. 

15 (2) REQUIRED STRATEGY.—The Secretary shall 

16 develop a strategy, working in consultation with the 

17 stakeholders identified in subsection (e), to maximize 

18 participation in the Firefighter Registry established 

19 under this Act. At minimum, the strategy shall in20 clude the following: 

21 (A) Identified minimum participation tar22 gets for volunteer, paid-on-call, and career fire23 fighters. 

24 (B) A strategy for increasing awareness of 

25 the Firefighter Registry and maximizing parVerDate Sep 11 2014 23:12 Feb 15, 2017 Jkt 069200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H931.IH H931

asabaliauskas on DSK3SPTVN1PROD with BILLS
6 

•HR 931 IH

1 ticipation among volunteer, paid-on-call, and ca2 reer firefighters to meet minimum participation 

3 targets. 

4 (C) Additional steps that may be required 

5 to ensure the equitable representation of groups 

6 identified in paragraph (5). 

7 (D) Information on how the Secretary will 

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

9 provide links to relevant health information de10 scribed in subsection (c)(2). 

11 (E) Working in consultation with the ex12 perts described in subsection (e), a reliable and 

13 standardized method for estimating the number 

14 of fire incidents attended by a firefighter as 

15 well as the type of fire incident so attended in 

16 the case such firefighter is unable to provide 

17 such information. 

18 (3) REPORT TO CONGRESS.—The Secretary 

19 shall submit the strategy described in paragraph (2) 

20 to the Committee on Energy and Commerce of the 

21 House of Representatives and the Committee on 

22 Health, Education, Labor, and Pensions of the Sen23 ate not later than 30 days after the date of the com24 pletion of the strategy. 


asabaliauskas on DSK3SPTVN1PROD with BILLS
7 

•HR 931 IH

1 (4) GUIDANCE FOR INCLUSION AND MAINTE2 NANCE OF DATA ON FIREFIGHTERS.—The Secretary 

3 shall develop, in consultation with the stakeholders 

4 identified in subsection (e), and disseminate guid5 ance to State health agencies, State departments of 

6 homeland security, and volunteer, paid-on-call, com7 bination, and career firefighting agencies that out8 lines the 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 23:12 Feb 15, 2017 Jkt 069200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H931.IH H931

asabaliauskas on DSK3SPTVN1PROD with BILLS
8 

•HR 931 IH

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 


asabaliauskas on DSK3SPTVN1PROD with BILLS
9 

•HR 931 IH

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 $2,500,000 for each of the fiscal years 2018 through 

15 2022. 

Æ 


asabaliauskas on DSK3SPTVN1PROD with BILLS