[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[S. 382 Reported in Senate (RS)]
<DOC>
Calendar No. 386
115th CONGRESS
2d Session
S. 382
To require the Secretary of Health and Human Services to develop a
voluntary registry to collect data on cancer incidence among
firefighters.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
February 15, 2017
Mr. Menendez (for himself, Ms. Murkowski, Mr. Rubio, Ms. Klobuchar, Mr.
Markey, Mr. Blumenthal, Mr. Daines, Mr. Booker, Mr. Franken, Mr.
Schumer, Mr. McCain, Mrs. Gillibrand, Mr. Tester, Mr. Nelson, Mr.
Sanders, Ms. Baldwin, Ms. Collins, Mr. Brown, Ms. Stabenow, Mr. Coons,
Mr. Donnelly, Mrs. McCaskill, Mr. Murphy, Ms. Hassan, Mr. Merkley, Mr.
Whitehouse, Mr. Van Hollen, Ms. Cortez Masto, Ms. Cantwell, Mr. Cardin,
Mr. Peters, Mrs. Fischer, Mr. Kaine, Mr. Reed, Mr. Durbin, Ms. Warren,
Mr. Carper, Mr. Schatz, Mr. Heinrich, Ms. Duckworth, Mrs. Feinstein,
Mrs. Shaheen, Mr. Blunt, Mr. King, Ms. Hirono, Ms. Smith, Mr. Casey,
Mr. Young, and Mr. Leahy) introduced the following bill; which was read
twice and referred to the Committee on Health, Education, Labor, and
Pensions
April 25, 2018
Reported by Mr. Alexander, with an amendment
[Strike out all after the enacting clause and insert the part printed
in italic]
_______________________________________________________________________
A BILL
To require the Secretary of Health and Human Services to develop a
voluntary 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,
<DELETED>SECTION 1. SHORT TITLE.</DELETED>
<DELETED> This Act may be cited as the ``Firefighter Cancer Registry
Act of 2017''.</DELETED>
<DELETED>SEC. 2. PATIENT REGISTRY FOR FIREFIGHTER CANCER
INCIDENCE.</DELETED>
<DELETED> (a) In General.--The Secretary of Health and Human
Services, acting through the Director of the Centers for Disease
Control and Prevention, shall develop and maintain, directly or through
a grant or cooperative agreement, a voluntary registry of firefighters
(referred to in this section as the ``Firefighter Registry'') to
collect relevant history and occupational information of such
firefighters that can be linked to available cancer registry data
collected by existing State cancer registries.</DELETED>
<DELETED> (b) Use of Firefighter Registry.--The Firefighter Registry
shall be used for the following purposes:</DELETED>
<DELETED> (1) To establish and improve collection
infrastructure and activities related to the nationwide
monitoring of the incidence of cancer among
firefighters.</DELETED>
<DELETED> (2) To collect, consolidate, store, and make
publicly available epidemiological information related to
cancer incidence and trends among firefighters.</DELETED>
<DELETED> (c) Relevant Data.--</DELETED>
<DELETED> (1) In general.--In carrying out the voluntary
data collection for purposes of inclusion under the Firefighter
Registry, the Secretary should seek to include the following
information:</DELETED>
<DELETED> (A) Identifiable information from a
representative sample size, as determined by the
Secretary under subsection (d)(2)(A), of volunteer,
paid-on-call, and career firefighters, independent of
cancer status or diagnosis.</DELETED>
<DELETED> (B) With respect to individual risk
factors and work history of firefighters, available
information on--</DELETED>
<DELETED> (i) basic demographic information,
including the age of the firefighter
involved;</DELETED>
<DELETED> (ii) a listing of status of the
firefighter as either volunteer, paid-on-call,
or career firefighter;</DELETED>
<DELETED> (iii) the number of years on the
job and a detailing of additional employment
experience that was either performed
concurrently alongside firefighting service,
before, or anytime thereafter;</DELETED>
<DELETED> (iv)(I) a measure of the number of
fire incidents attended as well as the type of
fire incidents (such as residential house fire
or commercial fire); or</DELETED>
<DELETED> (II) in the case of a firefighter
who is unable to provide information on such
number and type, an estimate of such number and
type based on the method developed under
subsection (d)(2);</DELETED>
<DELETED> (v) a list of additional risk
factors, including smoking or drug use, as
determined relevant by the Secretary;
and</DELETED>
<DELETED> (vi) Other physical examination
and medical history information relevant to a
cancer incidence study or general health of
firefighters not available in existing cancer
registries.</DELETED>
<DELETED> (C) Any additional information that is
deemed necessary by the Secretary.</DELETED>
<DELETED> (2) Diagnoses and treatment.--In carrying out the
data collection for purposes of inclusion under the Firefighter
Registry, with respect to diagnoses and treatment of
firefighters diagnosed with cancer, the Secretary shall enable
the Firefighter Registry to link to State-based cancer
registries, for a purpose described by clause (vi) or (vii) of
section 399B(c)(2)(D) of the Public Health Service Act (42
U.S.C. 280e(c)(2)(D)), to obtain information on--</DELETED>
<DELETED> (A) administrative information, including
date of diagnoses and source of information;
and</DELETED>
<DELETED> (B) pathological data characterizing the
cancer, including cancer site, state of disease
(pursuant to Staging Guide), incidence, and type of
treatment.</DELETED>
<DELETED> (d) Methods.--</DELETED>
<DELETED> (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.</DELETED>
<DELETED> (2) Required strategy.--The Secretary shall
develop a strategy, working in consultation with the
stakeholders identified in subsection (e), to maximize
participation in the Firefighter Registry established under
this Act. At minimum, the strategy shall include the
following:</DELETED>
<DELETED> (A) Identified minimum participation
targets for volunteer, paid-on-call, and career
firefighters.</DELETED>
<DELETED> (B) A strategy for increasing awareness of
the Firefighter Registry and maximizing participation
among volunteer, paid-on-call, and career firefighters
to meet minimum participation targets.</DELETED>
<DELETED> (C) Additional steps that may be required
to ensure the equitable representation of groups
identified in paragraph (5).</DELETED>
<DELETED> (D) Information on how the Secretary will
store data described in subsection (c)(1) and provide
links to relevant health information described in
subsection (c)(2).</DELETED>
<DELETED> (E) Working in consultation with the
experts described in subsection (e), a reliable and
standardized method for estimating the number of fire
incidents attended by a firefighter as well as the type
of fire incident so attended in the case such
firefighter is unable to provide such
information.</DELETED>
<DELETED> (3) Report to congress.--The Secretary shall
submit the strategy described in paragraph (2) to the Committee
on Energy and Commerce of the House of Representatives and the
Committee on Health, Education, Labor, and Pensions of the
Senate not later than 30 days after the date of the completion
of the strategy.</DELETED>
<DELETED> (4) Guidance for inclusion and maintenance of data
on firefighters.--The Secretary shall develop, in consultation
with the stakeholders identified in subsection (e), and
disseminate guidance to State health agencies, State
departments of homeland security, and volunteer, paid-on-call,
combination, and career firefighting agencies that outlines the
following:</DELETED>
<DELETED> (A) How new information about firefighters
will be submitted to the Firefighter Registry for
inclusion.</DELETED>
<DELETED> (B) How information about firefighters
will be maintained and updated in the Firefighter
Registry over time.</DELETED>
<DELETED> (C) A method for estimating the number of
fire incidents attended by a firefighter as well as the
type of fire incident so attended in the case such
firefighter is unable to provide such
information.</DELETED>
<DELETED> (D) Further information, as deemed
necessary by the Secretary.</DELETED>
<DELETED> (5) Ensuring representation of underrepresented
groups in registry.--In carrying out this section, the
Secretary shall take such measures as the Secretary deems
appropriate to encourage the inclusion of data on minority,
female, and volunteer firefighters in the Firefighter Registry
established under this section.</DELETED>
<DELETED> (e) Consultation.--The Secretary shall, on a regular
basis, seek feedback regarding the utility of the Firefighter Registry
established under this section and ways the Firefighter Registry can be
improved from non-Federal experts in the following areas:</DELETED>
<DELETED> (1) Public health experts with experience in
developing and maintaining cancer registries.</DELETED>
<DELETED> (2) Epidemiologists with experience in studying
cancer incidence.</DELETED>
<DELETED> (3) Clinicians with experience in diagnosing and
treating cancer incidence.</DELETED>
<DELETED> (4) Active and retired volunteer, paid-on-call,
and career firefighters as well as relevant national fire and
emergency response organizations.</DELETED>
<DELETED> (f) Research Availability.--The Secretary shall develop
and make public a process for de-identifying data from the Firefighter
Registry and making such data available without a fee for research or
other 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 identified in subsection (e).</DELETED>
<DELETED> (g) Privacy.--In carrying out this Act, the Secretary
shall apply to the Firefighter 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 and
provide for data privacy and security standards similar to those in the
HIPAA privacy regulation, as defined in section 1180(b)(3) of the
Social Security Act (42 U.S.C. 1320d-9(b)(3)).</DELETED>
<DELETED> (h) Authorization of Funds.--To carry out this section,
there are authorized to be appropriated $2,500,000 for each of the
fiscal years 2018 through 2022.</DELETED>
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Firefighter Cancer Registry Act of
2018''.
SEC. 2. VOLUNTARY 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 and in
coordination with other agencies as the Secretary determines
appropriate, shall develop and maintain, directly or through a grant or
cooperative agreement, a voluntary registry of firefighters (referred
to in this section as the ``Firefighter Registry'') to collect relevant
health and occupational information of such firefighters for purposes
of determining cancer incidence.
(b) Use of Firefighter Registry.--The Firefighter Registry may be
used for the following purposes:
(1) To improve data collection and data coordination
activities related to the nationwide monitoring of the
incidence of cancer among firefighters.
(2) To collect, consolidate, and maintain, consistent with
subsection (g), epidemiological information and analyses
related to cancer incidence and trends among firefighters
(c) Relevant Data.--
(1) Data collection.--In carrying out the voluntary data
collection for purposes of inclusion under the Firefighter
Registry, the Secretary may collect the following:
(A) Information, as determined by the Secretary
under subsection (d)(1), of volunteer, paid-on-call,
and career firefighters, independent of cancer status
or diagnosis.
(B) Individual risk factors and occupational
history of firefighters.
(C) Information, if available, related to--
(i) basic demographic information,
including--
(I) the age of the firefighter
involved during the relevant dates of
occupation as a firefighter; and
(II) the age of cancer diagnosis;
(ii) the status of the firefighter as
either volunteer, paid-on-call, or career
firefighter;
(iii) the total number of years of
occupation as a firefighter and a detailing of
additional employment experience, whether
concurrent, before, or anytime thereafter;
(iv)(I) the approximate number of fire
incidents attended, including information
related to the type of fire incidents and the
role of the firefighter in responding to the
incident; or
(II) in the case of a firefighter for whom
information on such number and type is
unavailable, an estimate of such number and
type based on the method developed under
subsection (d)(1)(D); and
(v) other medical information and health
history, including additional risk factors, as
appropriate, and other information relevant to
a cancer incidence study of firefighters.
(2) Information on diagnoses and treatment.--In carrying
out paragraph (1), with respect to diagnoses and treatment of
firefighters with cancer, the Secretary shall, as appropriate,
enable the Firefighter Registry to electronically connect to
State-based cancer registries, for a purpose described by
clause (vi) or (vii) of section 399B(c)(2)(D) of the Public
Health Service Act (42 U.S.C. 280e(c)(2)(D)), to obtain--
(A) date of diagnoses and source of information;
and
(B) pathological data characterizing the cancer,
including cancer site, state of disease (pursuant to
Staging Guide), incidence, and type of treatment.
(d) Firefighter Registry Coordination Strategy.--
(1) Required strategy.--The Secretary shall, in
consultation with the relevant stakeholders, such as medical
professionals and public health experts with experience
developing and maintaining cancer registries, studying cancer
incidence, or diagnosing and treating cancer, including
epidemiologists and pathologists, develop a strategy to
coordinate data collection activities, including within
existing State registries, for inclusion in the Firefighter
Registry established under this Act. The strategy may include
the following:
(A) Increasing awareness of the Firefighter
Registry and encouraging participation among volunteer,
paid-on-call, and career firefighters.
(B) Consideration of unique data collection needs
that may arise to generate a statistically reliable
representation of minority, female, and volunteer
firefighters, including methods, as needed, to
encourage participation from such populations.
(C) Information on how the Secretary will store
data described in subsection (c)(1) and provide
electronic access to relevant health information
described in subsection (c)(2).
(D) Working in consultation with the experts
described in subsection (e), a reliable and
standardized method for estimating the number of fire
incidents attended by a firefighter as well as the type
of fire incident so attended in the case such
firefighter is unable to provide such information.
(2) Report to congress.--The Secretary shall submit the
strategy described in paragraph (1) to the Committee on Energy
and Commerce of the House of Representatives and the Committee
on Health, Education, Labor, and Pensions of the Senate not
later than 30 days after the date of the completion of the
strategy.
(3) Guidance for inclusion and maintenance of data on
firefighters.--The Secretary shall develop, in consultation
with the stakeholders identified in subsection (e), State
health agencies, State departments of homeland security, and
volunteer, paid-on-call, combination, and career firefighting
agencies, a strategy for inclusion of firefighters in the
registry that are representative of the general population of
firefighters, that outlines the following:
(A) How new information about firefighters will be
submitted to the Firefighter Registry for inclusion.
(B) How information about firefighters will be
maintained and updated in the Firefighter Registry over
time.
(C) A method for estimating the number of fire
incidents attended by a firefighter as well as the type
of fire incident so attended in the case such
firefighter is unable to provide such information.
(D) Further information, as deemed necessary by the
Secretary.
(e) Consultation and Report.--The Secretary shall consult with non-
Federal experts on the Firefighter Registry established under this
section, and shall submit to the Committee on Health, Education, Labor,
and Pensions of the Senate and the Committee on Energy and Commerce of
the House of Representatives a report that includes, as appropriate,
information on goals achieved and improvements needed to strengthen the
Firefighter Registry. Such non-Federal experts shall include the
following:
(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 as well as relevant national fire and emergency
response organizations.
(f) Research Availability.--Subject to subsection (g), the
Secretary shall ensure that information and analysis in the Firefighter
Registry are available, as appropriate, to the public, including
researchers and firefighters.
(g) Privacy.--In carrying out this Act, the Secretary shall ensure
that information in and analysis of the Firefighter Registry are made
available in a manner that, at a minimum, protects personal privacy to
the extent required by applicable Federal and State privacy law.
(h) Authorization of Funds.--To carry out this section, there are
authorized to be appropriated $2,500,000 for each of the fiscal years
2018 through 2022.
Calendar No. 386
115th CONGRESS
2d Session
S. 382
_______________________________________________________________________
A BILL
To require the Secretary of Health and Human Services to develop a
voluntary registry to collect data on cancer incidence among
firefighters.
_______________________________________________________________________
April 25, 2018
Reported with an amendment