I 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Mary Jo Lawyer Spano 

5 Mesothelioma Patient Registry Act of 2019’’. 

6 SEC. 2. PATIENT REGISTRY FOR MESOTHELIOMA DATA 

7 COLLECTION AND RESEARCH. 

8 Title III of the Public Health Service Act is amended 

9 by inserting after section 399V–6 of such Act (42 U.S.C. 

10 280g–17) the following: 


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1 ‘‘SEC. 399V–7. PATIENT REGISTRY FOR MESOTHELIOMA 

2 DATA COLLECTION AND RESEARCH. 

3 ‘‘(a) IN GENERAL.—The Secretary, acting through 

4 the Administrator of the Agency for Toxic Substances and 

5 Disease Registry, shall develop a patient registry to collect 

6 data on mesothelioma, including information with respect 

7 to the incidence and prevalence of the disease in the 

8 United States. 

9 ‘‘(b) USES.—The Secretary shall use the registry 

10 under subsection (a)— 

11 ‘‘(1) to enhance and expand infrastructure and 

12 activities for tracking the epidemiology of mesothe13 lioma patients; 

14 ‘‘(2) to collect, consolidate, and report on health 

15 information on patients who have been diagnosed 

16 with mesothelioma, including with respect to— 

17 ‘‘(A) treatment outcomes, including patient 

18 longevity; and 

19 ‘‘(B) the number of patients receiving 

20 treatment for mesothelioma disaggregated by 

21 hospital; 

22 ‘‘(3) to better describe the incidence and preva23 lence of mesothelioma in the United States; 

24 ‘‘(4) to facilitate further research on mesothe25 lioma; 


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1 ‘‘(5) to examine factors, such as environmental 

2 and occupational factors, that may be associated 

3 with mesothelioma; 

4 ‘‘(6) to better outline key demographic factors 

5 (such as age, race or ethnicity, gender, and family 

6 history) associated with mesothelioma; and 

7 ‘‘(7) to make the information in such registry, 

8 other than individually identifiable information, 

9 available to the public to facilitate and enhance re10 search on, and prevention and treatment of, meso11 thelioma. 

12 ‘‘(c) CONTENT.—In carrying out this section, the 

13 Secretary— 

14 ‘‘(1) shall provide for the collection and storage 

15 of information on the incidence and prevalence of 

16 mesothelioma in the United States; 

17 ‘‘(2) when scientifically possible, shall provide 

18 for the collection and storage of other available in19 formation on mesothelioma, such as information con20 cerning— 

21 ‘‘(A) demographics and other information 

22 associated or possibly associated with mesothe23 lioma, such as age, race, ethnicity, sex, geo24 graphic location, and family history; 


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1 ‘‘(B) risk factors associated or possibly as2 sociated with mesothelioma, including genetic 

3 and environmental risk factors; and 

4 ‘‘(C) diagnosis and progression markers; 

5 and 

6 ‘‘(3) may provide for the collection and storage 

7 of information relevant to analysis on mesothelioma, 

8 such as information concerning— 

9 ‘‘(A) the epidemiology of the disease; 

10 ‘‘(B) the natural history of the disease; 

11 ‘‘(C) the prevention of the disease; 

12 ‘‘(D) the detection, management, and 

13 treatment approaches for the disease; and 

14 ‘‘(E) the development of outcomes meas15 ures. 

16 ‘‘(d) CONSULTATION.—In carrying out this section, 

17 the Secretary shall consult with individuals with appro18 priate expertise, including non-Federal mesothelioma ex19 perts including— 

20 ‘‘(1) epidemiologists with experience in disease 

21 surveillance or registries; 

22 ‘‘(2) representatives of national voluntary asso23 ciations that focus on mesothelioma or have dem24 onstrated experience in research, care, or patient 

25 service for mesothelioma; 


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1 ‘‘(3) health information technology experts or 

2 other information management specialists; 

3 ‘‘(4) clinicians with expertise in mesothelioma; 

4 and 

5 ‘‘(5) research scientists with experience con6 ducting translational research or utilizing surveil7 lance systems for scientific research purposes. 

8 ‘‘(e) COORDINATION WITH OTHER FEDERAL AGEN9 CIES.—The Secretary shall make information in and anal10 ysis derived from the registry under this section available, 

11 as appropriate, to Federal departments and agencies, such 

12 as the National Institutes of Health, the Food and Drug 

13 Administration, the Centers for Medicare & Medicaid 

14 Services, the Agency for Healthcare Research and Quality, 

15 the Department of Veterans Affairs, and the Department 

16 of Defense. 

17 ‘‘(f) PUBLIC ACCESS.—Subject to subsection (g), the 

18 Secretary shall make information in, and analysis derived 

19 from, the registry under this section available, as appro20 priate, to the public, including researchers. 

21 ‘‘(g) PRIVACY.—The Secretary shall ensure that pri22 vacy and security protections applicable to the registry 

23 under this section are at least as stringent as the privacy 

24 and security protections under HIPAA privacy and secu25 rity law (as defined in section 3009). 


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1 ‘‘(h) REPORTS TO CONGRESS.— 

2 ‘‘(1) INITIAL REPORT.—Not later than 18 

3 months after the date of enactment of the Mary Jo 

4 Lawyer Spano Mesothelioma Patient Registry Act of 

5 2019, the Secretary shall submit to the Congress a 

6 report that— 

7 ‘‘(A) shall outline— 

8 ‘‘(i) the findings in the mesothelioma 

9 patient registry under subsection (a); 

10 ‘‘(ii) future plans for expansion or re11 vision of such registry; and 

12 ‘‘(iii) the scope of such registry; and 

13 ‘‘(B) may include a description of the ac14 tivities undertaken by the Secretary to establish 

15 partnerships with research and patient advocacy 

16 communities to expand such registry. 

17 ‘‘(2) SUBSEQUENT REPORT.—Not later than 4 

18 years after the date of enactment of the Mary Jo 

19 Lawyer Spano Mesothelioma Patient Registry Act of 

20 2019, the Secretary shall submit a report to the 

21 Congress concerning the implementation of this sec22 tion. Such report should include information on— 

23 ‘‘(A) the development and maintenance of 

24 the mesothelioma patient registry under sub25 section (a); 


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1 ‘‘(B) the type of information collected and 

2 stored in the registry; 

3 ‘‘(C) the use and availability of such infor4 mation, including guidelines for such use; and 

5 ‘‘(D) the use and coordination of databases 

6 that collect or maintain information on meso7 thelioma.’’. 

Æ 


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