Authorizing Legislation

H. R. 931

One Hundred Fifteenth Congress
of the
United States of America
AT T H E S E C O N D S E S S I O N
Begun and held at the City of Washington on Wednesday,
the third day of January, two thousand and eighteen

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
INCIDENCE.

REGISTRY

FOR

FIREFIGHTER

CANCER

(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-oncall, 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.

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(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.

Speaker of the House of Representatives.

Vice President of the United States and
President of the Senate.