[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. 2799 Introduced in Senate (IS)]

<DOC>






114th CONGRESS
  2d Session
                                S. 2799

  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 SENATE OF THE UNITED STATES

                             April 14, 2016

Mr. Menendez (for himself, Ms. Murkowski, Ms. Klobuchar, Mr. Rubio, Mr. 
  Reid, Mrs. Gillibrand, Mr. Blumenthal, Mrs. Boxer, Mr. Franken, Mr. 
McCain, Mr. Schumer, Mr. Tester, Mr. Markey, and Mr. Durbin) introduced 
the following bill; which was read twice and referred to the Committee 
               on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 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.

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

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Firefighter Cancer Registry Act''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (1) Studies conducted since the 1990s have indicated a 
        strong link between firefighting and an increased risk for 
        several major cancers.
            (2) The cancers identified as most common among 
        firefighters according to these studies include testicular 
        cancer, which male firefighters are 102 percent more likely to 
        be diagnosed with, stomach cancer, multiple myeloma, and brain 
        cancer, among several others.
            (3) The heightened incidence of cancer among firefighters 
        has been attributed to their frequent exposure to a range of 
        harmful substances, including resultant pyrolysis products, 
        toxic particulates, gases and fumes, metals such as cadmium and 
        lead, chemical substances such as benzene and vinyl chloride, 
        and minerals such as asbestos and silicates.
            (4) An extensive 2014 study conducted by the National 
        Institute of Occupational Safety and Health, over the course of 
        several years and including almost 30,000 firefighters, found 
        that firefighters were at an increased risk of being diagnosed 
        with malignant mesothelioma and found potential links between 
        exposure to fire incidents and heightened risks for lung cancer 
        and leukemia, among several others.
            (5) Past studies examining cancer incidence among 
        firefighters have been limited by the availability and 
        standardization of important epidemiological data, relatively 
        small sample sizes, inconsistencies in the operationalization 
        of key terms and metrics, incomplete employment histories, and 
        an underrepresentation of minority, female, and volunteer 
        firefighters.
            (6) Today, many States across the country maintain cancer 
        registries that collect and collate information regarding 
        cancer diagnoses, demographic information, and treatment plans. 
        State cancer registries have greatly contributed to overcoming 
        these obstacles by offering centralized repositories of 
        information, which researchers in the public and private 
        sectors can access when conducting research on cancer risks.
            (7) While these State-based cancer registries undoubtedly 
        contribute to furthering research related to assessing cancer 
        incidence among firefighters, a special purpose national cancer 
        registry would provide researchers and public health agencies 
        with more direct and comprehensive access to the specific set 
        of information they need to conduct more robust, focused, and 
        epidemiologically rigorous research on cancer incidence among 
        firefighters.
            (8) Efforts to understand cancer incidence among 
        firefighters through a specialized national cancer registry 
        will better inform the kinds of precautions firefighters should 
        take in the future, improve our understanding of key 
        epidemiological trends, and potentially lead to the development 
        of more sophisticated safety protocols to lower cancer risks.

SEC. 3. PATIENT 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, shall 
develop and maintain a voluntary patient registry to collect data on 
cancer incidence among firefighters.
    (b) Use of Registry.--The patient registry shall be used for the 
following purposes:
            (1) To establish and improve collection infrastructure and 
        activities related to the nationwide monitoring of the 
        incidence of cancer among firefighters.
            (2) To collect, consolidate, store, and make publicly 
        available epidemiological information related to cancer 
        incidence and trends among firefighters.
    (c) Relevant Data.--In carrying out the voluntary data collection 
for purposes of inclusion under the patient registry under subsection 
(a), the Secretary should seek to include the following de-identified 
information:
            (1) With respect to cancer diagnoses and treatment of 
        firefighters, de-identified information on--
                    (A) full detailing of physical examinations and 
                medical history;
                    (B) complete detailing of all relevant diagnostic 
                tests and lab procedures;
                    (C) complete detailing of all pathology and 
                operative reports; and
                    (D) complete detailing of treatments undergone or 
                planned.
            (2) With respect to individual patient history relating to 
        the incidence of cancer among firefighters, de-identified 
        information on--
                    (A) basic demographic information, including the 
                age of the firefighter involved and age of onset of 
                cancer;
                    (B) a listing of status of the firefighter as 
                either volunteer, paid-on-call, or career firefighter;
                    (C) the number of years on the job and details 
                regarding additional employment experience that was 
                performed concurrently with firefighting service or 
                anytime thereafter;
                    (D)(i) a measure of the number of fire incidents 
                attended and the types of fire incidents (such as 
                residential house fire or commercial fire); or
                    (ii) in the case of a firefighter who is unable to 
                provide information on such number and types, an 
                estimate of such number and types based on the method 
                developed under subsection (d)(3); and
                    (E) a list of additional risk factors, including 
                smoking or drug use, as the Secretary determines 
                relevant.
            (3) Any additional information, as the Secretary determines 
        necessary.
    (d) Methods.--
            (1) In general.--For the purposes described in subsection 
        (b), the Secretary is authorized to incorporate questions into 
        public health surveys, questionnaires, and other databases in 
        existence as of the date of enactment of this Act.
            (2) Ensuring representation of underrepresented groups in 
        registry.--In carrying out this section, the Secretary shall 
        take such measures as the Secretary determines appropriate to 
        encourage the inclusion of data on minority, female, and 
        volunteer firefighters in the registry established under this 
        section.
            (3) Method to estimate number and type of fire incidents.--
        For purposes of subsection (c)(2)(D), the Secretary, in 
        consultation with the experts described in subsection (e), 
        shall develop a reliable and standardized method for estimating 
        the number of fire incidents attended by a firefighter and the 
        types of fire incidents so attended in the case such 
        firefighter is unable to provide such information.
    (e) Consultation.--The Secretary shall, on a regular basis, seek 
feedback regarding the utility of the registry established under this 
section and ways the registry can be improved from non-Federal experts 
in the following areas:
            (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 and relevant national fire and emergency response 
        organizations.
    (f) Research Availability.--The Secretary shall develop and make 
public an approval process for making de-identified cancer registry 
data submitted for inclusion in the patient registry developed under 
subsection (a) available without a fee for public research purposes. 
Such process shall provide that such data shall be made available for 
such research purposes only if there is an agreement to make findings, 
journal articles, or other print or web-based publications derived from 
such research public or available to the relevant stakeholders 
described in subsection (e)(4).
    (g) Privacy.--In carrying out this Act, the Secretary shall apply 
to the registry developed under subsection (a) data security provisions 
and privacy standards that comply with the best practices of the 
Centers for Disease Control and Prevention, as defined by the National 
Institute of Standards and Technology in Special Publication 800-37 
revision 1, and the HIPAA privacy regulation, as defined in section 
1180(b)(3) of the Social Security Act (42 U.S.C. 1320d-9(b)(3)).
    (h) Authorization of Funds.--To carry out this section, there are 
authorized to be appropriated $2,500,000 for each of the fiscal years 
2017 through 2021.
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