I 
115TH CONGRESS 
1ST SESSION H. R. 1563 
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 16, 2017 
Mr. KATKO (for himself, Mr. COLLINS of New York, Mr. DONOVAN, Mr. 
GARAMENDI, Mr. GRIJALVA, Mr. JEFFRIES, Mr. KING of New York, Mr. 
LIPINSKI, Ms. MCCOLLUM, Mr. WALZ, Ms. VELA´ZQUEZ, Mr. ZELDIN, 
Mr. CONNOLLY, Ms. NORTON, Mrs. COMSTOCK, Mr. UPTON, Mr. DENT, 
Mr. REED, Mr. POCAN, Ms. STEFANIK, Mr. SMITH of New Jersey, Mr. 
SOTO, and Mr. KILMER) 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 Representa-
tives 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 2017’’. 
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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 mesothe-
lioma 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; 
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‘‘(3) to better describe the incidence and preva-
lence of mesothelioma in the United States; 
‘‘(4) to facilitate further research on mesothe-
lioma; 
‘‘(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 re-
search on, and prevention and treatment of, meso-
thelioma. 
‘‘(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 in-
formation on mesothelioma, such as information con-
cerning— 
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‘‘(A) demographics and other information 
associated or possibly associated with mesothe-
lioma, such as age, race, ethnicity, sex, geo-
graphic location, and family history; 
‘‘(B) risk factors associated or possibly as-
sociated 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 meas-
ures. 
‘‘(d) CONSULTATION.—In carrying out this section, 
the Secretary shall consult with individuals with appro-
priate expertise, including non-Federal mesothelioma ex-
perts including— 
‘‘(1) epidemiologists with experience in disease 
surveillance or registries; 
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