[United States Statutes at Large, Volume 132, 115th Congress, 2nd Session]
[From the U.S. Government Publishing Office, www.gpo.gov]


Public Law 115-194
115th Congress

An Act


 
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, <>
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;

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(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 identified in subsection (e),
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

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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, firefighters, and national fire
service organizations.

(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.

[[Page 1509]]

(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.

Approved July 7, 2018.

LEGISLATIVE HISTORY--H.R. 931 (S. 382):
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HOUSE REPORTS: No. 115-301 (Comm. on Energy and Commerce).
CONGRESSIONAL RECORD:
Vol. 163 (2017):
Sept. 12, considered and passed
House.
Vol. 164 (2018):
May 10, considered and passed
Senate, amended.
June 22, House concurred in Senate
amendment.