I 

114TH CONGRESS 

2D SESSION H. R. 4625 

To require the Secretary of Health and Human Services to develop a voluntary patient registry to collect data on cancer incidence among firefighters. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 25, 2016 

Mr. HANNA (for himself and Mr. PASCRELL) 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 patient 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, 

3 SECTION 1. SHORT TITLE. 

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

5 Registry Act of 2016’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds the following: 


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1 (1) Studies conducted since the 1990s have in2 dicated a strong link between firefighting and an in3 creased risk for several major cancers. 

4 (2) The cancers identified as most common 

5 among firefighters according to these studies include 

6 testicular cancer, which male firefighters are 102 

7 percent more likely to be diagnosed with, stomach 

8 cancer, multiple myeloma, and brain cancer, among 

9 several others. 

10 (3) The heightened incidence of cancer among 

11 firefighters has been attributed to their frequent ex12 posure to a range of harmful substances including 

13 resultant pyrolysis products, toxic particulates, gases 

14 and fumes, metals such as cadmium and lead, chem15 ical substances such as benzene and vinyl chloride, 

16 and minerals such as asbestos and silicates. 

17 (4) An extensive 2014 study conducted by the 

18 National Institute of Occupational Safety and 

19 Health (NIOSH) over the course of several years 

20 and which included almost 30,000 firefighters found 

21 that firefighters were at an increased risk of being 

22 diagnosed with malignant mesothelioma and found 

23 potential links between exposure to fire incidents 

24 and heightened risks for lung cancer and leukemia, 

25 among several others. 


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1 (5) Past studies examining cancer incidence 

2 among firefighters have been limited by the avail3 ability and standardization of important epidemio4 logical data, relatively small sample sizes, inconsist5 encies in the operationalization of key terms and 

6 metrics, incomplete employment histories, and an 

7 underrepresentation of minority, female, and volun8 teer firefighters. 

9 (6) Today, many States across the country 

10 maintain cancer registries that collect and collate in11 formation regarding cancer diagnoses, demographic 

12 information, and treatment plans. State cancer reg13 istries have greatly contributed to overcoming these 

14 obstacles by offering centralized repositories of infor15 mation, which researchers in the public and private 

16 sectors can access when conducting research on can17 cer risks. 

18 (7) While these State-based cancer registries 

19 undoubtedly contribute to furthering research re20 lated to assessing cancer incidence among fire21 fighters, a special purpose national cancer registry 

22 would provide researchers and public health agencies 

23 with more direct and comprehensive access to the 

24 specific set of information they need to conduct more 


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1 robust, focused, and epidemiologically rigorous re2 search on cancer incidence among firefighters. 

3 (8) Efforts to understand cancer incidence 

4 among firefighters through a specialized national 

5 cancer registry will better inform the kinds of pre6 cautions firefighters should take in the future, im7 prove our understanding of key epidemiological 

8 trends, and potentially lead to the development of 

9 more sophisticated safety protocols to lower cancer 

10 risks. 

11 SEC. 3. PATIENT REGISTRY FOR FIREFIGHTER CANCER IN12 CIDENCE. 

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

14 Human Services, acting through the Director of the Cen15 ters for Disease Control and Prevention, shall develop and 

16 maintain a voluntary patient registry to collect data on 

17 cancer incidence among firefighters. 

18 (b) USE OF REGISTRY.—The patient registry shall be 

19 used for the following purposes: 

20 (1) To establish and improve collection infra21 structure and activities related to the nationwide 

22 monitoring of the incidence of cancer among fire23 fighters. 


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

2 publicly available epidemiological information related 

3 to cancer incidence and trends among firefighters. 

4 (c) RELEVANT DATA.—In carrying out the voluntary 

5 data collection for purposes of inclusion under the patient 

6 registry under subsection (a), the Secretary should seek 

7 to include the following de-identified information: 

8 (1) With respect to cancer diagnoses and treat9 ment of firefighters, de-identified information on— 

10 (A) full detailing of physical examinations 

11 and medical history; 

12 (B) complete detailing of all relevant diag13 nostic tests and lab procedures; 

14 (C) complete detailing of all pathology and 

15 operative reports; and 

16 (D) complete detailing of treatments un17 dergone or planned. 

18 (2) With respect to individual patient history 

19 relating to the incidence of cancer among fire20 fighters, de-identified information on— 

21 (A) basic demographic information, includ22 ing the age of the firefighter involved and age 

23 of onset of cancer; 


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1 (B) a listing of status of the firefighter as 

2 either volunteer, paid-on-call, or career fire3 fighter; 

4 (C) the number of years on the job and a 

5 detailing of additional employment experience 

6 that was either performed concurrently along7 side firefighting service or anytime thereafter; 

8 (D)(i) a measure of the number of fire in9 cidents attended as well as the type of fire inci10 dents (such as residential house fire or commer11 cial fire); or 

12 (ii) in the case of a firefighter who is un13 able to provide information on such number and 

14 type, an estimate of such number and type 

15 based on the method developed under sub16 section (d)(2); and 

17 (E) a list of additional risk factors, includ18 ing smoking or drug use, as determined rel19 evant by the Secretary. 

20 (3) Any additional information that is deemed 

21 necessary by the Secretary. 

22 (d) METHODS.— 

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

24 in subsection (b), the Secretary is authorized to in25 corporate questions into public health surveys, quesVerDate Sep 11 2014 20:28 Feb 29, 2016 Jkt 059200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H4625.IH H4625

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1 tionnaires, and other databases in existence as of the 

2 date of enactment of this Act. 

3 (2) ENSURING REPRESENTATION OF UNDER4 REPRESENTED GROUPS IN REGISTRY.—In carrying 

5 out this section, the Secretary shall take such meas6 ures as the Secretary deems appropriate to encour7 age the inclusion of data on minority, female, and 

8 volunteer firefighters in the registry established 

9 under this section. 

10 (3) METHOD TO ESTIMATE NUMBER AND TYPE

11 OF FIRE INCIDENTS.—For purposes of subsection 

12 (c)(2)(D), the Secretary, in consultation with the ex13 perts described in subsection (e), shall develop a reli14 able and standardized method for estimating the 

15 number of fire incidents attended by a firefighter as 

16 well as the type of fire incident so attended in the 

17 case such firefighter is unable to provide such infor18 mation. 

19 (e) CONSULTATION.—The Secretary shall, on a reg20 ular basis, seek feedback regarding the utility of the reg21 istry established under this section and ways the registry 

22 can be improved from non-Federal experts in the following 

23 areas: 

24 (1) Public health experts with experience in de25 veloping and maintaining cancer registries. 


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1 (2) Epidemiologists with experience in studying 

2 cancer incidence. 

3 (3) Clinicians with experience in diagnosing and 

4 treating cancer incidence. 

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

6 and career firefighters as well as relevant national 

7 fire and emergency response organizations. 

8 (f) RESEARCH AVAILABILITY.—The Secretary shall 

9 develop and make public an approval process for making 

10 de-identified cancer registry data submitted for inclusion 

11 in the patient registry developed under subsection (a) 

12 available without a fee for public research purposes. Such 

13 process shall provide that such data shall be made avail14 able for such research purposes only if there is an agree15 ment to make findings, journal articles, or other print or 

16 web-based publications derived from such research public 

17 or available to the relevant stakeholders identified in sub18 section (e)(4). 

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

20 shall apply to the registry developed under subsection (a) 

21 data security provisions and privacy standards that com22 ply with the best practices of the Centers for Disease Con23 trol and Prevention, as defined by the National Institute 

24 of Standards and Technology in Special Publication 800– 

25 37 revision 1, as well as the HIPAA privacy regulation, 


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1 as defined in section 1180(b)(3) of the Social Security Act 

2 (42 U.S.C. 1320d–9(b)(3)). 

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

4 section, there are authorized to be appropriated 

5 $2,500,000 for each of the fiscal years 2017 through 

6 2021. 

Æ 


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