Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2021
This bill requires the Agency for Toxic Substances and Disease Registry, which is part of the Department of Health and Human Services, to establish a mesothelioma patient registry. (Mesothelioma is a cancer of the tissue lining the lung, chest, and abdomen areas and is generally associated with asbestos exposure.) The registry must include information relating to the incidence and prevalence of mesothelioma in the United States, including treatment outcomes and demographics.
[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5869 Introduced in House (IH)]
<DOC>
117th CONGRESS
1st Session
H. R. 5869
To amend the Public Health Service Act to provide for the establishment
of a mesothelioma patient registry, and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
November 4, 2021
Mr. Katko (for himself and Mr. Delgado) introduced the following bill;
which was referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to provide for the establishment
of a mesothelioma patient registry, and for other purposes.
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 ``Mary Jo Lawyer Spano Mesothelioma
Patient Registry Act of 2021''.
SEC. 2. PATIENT REGISTRY FOR MESOTHELIOMA DATA COLLECTION AND RESEARCH.
Title III of the Public Health Service Act is amended by inserting
after section 399V-6 of such Act (42 U.S.C. 280g-17) the following:
``SEC. 399V-7. PATIENT REGISTRY FOR MESOTHELIOMA DATA COLLECTION AND
RESEARCH.
``(a) In General.--The Secretary, acting through the Administrator
of the Agency for Toxic Substances and Disease Registry, shall develop
a patient registry to collect data on mesothelioma, including
information with respect to the incidence and prevalence of the disease
in the United States.
``(b) Uses.--The Secretary shall use the registry under subsection
(a)--
``(1) to enhance and expand infrastructure and activities
for tracking the epidemiology of mesothelioma patients;
``(2) to collect, consolidate, and report on health
information on patients who have been diagnosed with
mesothelioma, including with respect to--
``(A) treatment outcomes, including patient
longevity; and
``(B) the number of patients receiving treatment
for mesothelioma disaggregated by hospital;
``(3) to better describe the incidence and prevalence of
mesothelioma in the United States;
``(4) to facilitate further research on mesothelioma;
``(5) to examine factors, such as environmental and
occupational factors, that may be associated with mesothelioma;
``(6) to better outline key demographic factors (such as
age, race or ethnicity, gender, and family history) associated
with mesothelioma; and
``(7) to make the information in such registry, other than
individually identifiable information, available to the public
to facilitate and enhance research on, and prevention and
treatment of, mesothelioma.
``(c) Content.--In carrying out this section, the Secretary--
``(1) shall provide for the collection and storage of
information on the incidence and prevalence of mesothelioma in
the United States;
``(2) when scientifically possible, shall provide for the
collection and storage of other available information on
mesothelioma, such as information concerning--
``(A) demographics and other information associated
or possibly associated with mesothelioma, such as age,
race, ethnicity, sex, geographic location, and family
history;
``(B) risk factors associated or possibly
associated with mesothelioma, including genetic and
environmental risk factors; and
``(C) diagnosis and progression markers; and
``(3) may provide for the collection and storage of
information relevant to analysis on mesothelioma, such as
information concerning--
``(A) the epidemiology of the disease;
``(B) the natural history of the disease;
``(C) the prevention of the disease;
``(D) the detection, management, and treatment
approaches for the disease; and
``(E) the development of outcomes measures.
``(d) Consultation.--In carrying out this section, the Secretary
shall consult with individuals with appropriate expertise, including
non-Federal mesothelioma experts including--
``(1) epidemiologists with experience in disease
surveillance or registries;
``(2) representatives of national voluntary associations
that focus on mesothelioma or have demonstrated experience in
research, care, or patient service for mesothelioma;
``(3) health information technology experts or other
information management specialists;
``(4) clinicians with expertise in mesothelioma; and
``(5) research scientists with experience conducting
translational research or utilizing surveillance systems for
scientific research purposes.
``(e) Coordination With Other Federal Agencies.--The Secretary
shall make information in and analysis derived from the registry under
this section available, as appropriate, to Federal departments and
agencies, such as the National Institutes of Health, the Food and Drug
Administration, the Centers for Medicare & Medicaid Services, the
Agency for Healthcare Research and Quality, the Department of Veterans
Affairs, and the Department of Defense.
``(f) Public Access.--Subject to subsection (g), the Secretary
shall make information in, and analysis derived from, the registry
under this section available, as appropriate, to the public, including
researchers.
``(g) Privacy.--The Secretary shall ensure that privacy and
security protections applicable to the registry under this section are
at least as stringent as the privacy and security protections under
HIPAA privacy and security law (as defined in section 3009).
``(h) Reports to Congress.--
``(1) Initial report.--Not later than 18 months after the
date of enactment of the Mary Jo Lawyer Spano Mesothelioma
Patient Registry Act of 2021, the Secretary shall submit to the
Congress a report that--
``(A) shall outline--
``(i) the findings in the mesothelioma
patient registry under subsection (a);
``(ii) future plans for expansion or
revision of such registry; and
``(iii) the scope of such registry; and
``(B) may include a description of the activities
undertaken by the Secretary to establish partnerships
with research and patient advocacy communities to
expand such registry.
``(2) Subsequent report.--Not later than 4 years after the
date of enactment of the Mary Jo Lawyer Spano Mesothelioma
Patient Registry Act of 2021, the Secretary shall submit a
report to the Congress concerning the implementation of this
section. Such report should include information on--
``(A) the development and maintenance of the
mesothelioma patient registry under subsection (a);
``(B) the type of information collected and stored
in the registry;
``(C) the use and availability of such information,
including guidelines for such use; and
``(D) the use and coordination of databases that
collect or maintain information on mesothelioma.''.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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