Title: Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2019
Policy area: Health

Summary:
Mary Jo Lawyer Spano Mesothelioma Patient Registry Act of 2019
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 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1824 Introduced in House (IH)]

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116th CONGRESS
  1st Session
                                H. R. 1824

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

                             March 18, 2019

Mr. Katko (for himself and Mr. Kennedy) 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 2019''.

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 2019, 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 2019, 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.''.
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