IB 

Union Calendar No. 239 

115TH CONGRESS 

1ST SESSION H. R. 1222 

[Report No. 115–329] 

To amend the Public Health Service Act to coordinate Federal congenital 

heart disease research efforts and to improve public education and awareness of congenital heart disease, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 27, 2017 

Mr. BILIRAKIS (for himself and Mr. SCHIFF) introduced the following bill; 

which was referred to the Committee on Energy and Commerce 

SEPTEMBER 25, 2017 

Additional sponsors: Mr. ABRAHAM, Mr. SWALWELL of California, Mr. 

LOEBSACK, Mr. BOST, Mr. SOTO, Mr. POCAN, Mrs. MCMORRIS RODGERS, Mrs. MURPHY of Florida, Mr. WEBSTER of Florida, Mr. MULLIN, 

Mr. EVANS, Mr. STIVERS, Mr. GUTHRIE, Mr. CONNOLLY, Ms. NORTON, 

Mr. NOLAN, Mr. FITZPATRICK, Mr. COLLINS of New York, Ms. 

VELA ́ZQUEZ, Ms. ROS-LEHTINEN, Mr. SESSIONS, Mr. GRIFFITH, Mr. 

ELLISON, Mr. MOULTON, Mr. CA ́RDENAS, Mr. WALBERG, and Mr. MEEHAN

SEPTEMBER 25, 2017 

Reported with an amendment, committed to the Committee of the Whole 

House on the State of the Union, and ordered to be printed 

[Strike out all after the enacting clause and insert the part printed in italic] 

[For text of introduced bill, see copy of bill as introduced on February 27, 2017] 


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A BILL 

To amend the Public Health Service Act to coordinate Federal congenital heart disease research efforts and to improve public education and awareness of congenital heart 

disease, and for other purposes. 


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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 ‘‘Congenital Heart Fu5 tures Reauthorization Act of 2017’’. 

6 SEC. 2. NATIONAL CONGENITAL HEART DISEASE SURVEIL7 LANCE SYSTEM. 

8 Section 399V–2 of the Public Health Service Act (42 

9 U.S.C. 280g–13) is amended to read as follows: 

10 ‘‘SEC. 399V–2. NATIONAL CONGENITAL HEART DISEASE RE11 SEARCH, SURVEILLANCE, AND AWARENESS. 

12 ‘‘(a) IN GENERAL.—The Secretary shall— 

13 ‘‘(1) enhance and expand research and surveil14 lance infrastructure to study and track the epidemi15 ology of congenital heart disease (in this section re16 ferred to as ‘CHD’); and 

17 ‘‘(2) award grants to eligible entities to under18 take the activities described in this section. 

19 ‘‘(b) NATIONAL CONGENITAL HEART DISEASE

20 STUDY.— 

21 ‘‘(1) IN GENERAL.—The Secretary shall plan, de22 velop, implement, and submit one or more reports to 

23 the Congress on a study to improve understanding of 

24 the epidemiology of CHD across the lifespan, from 


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1 birth to adulthood, with particular interest in the fol2 lowing: 

3 ‘‘(A) Health care utilization of those af4 fected by CHD. 

5 ‘‘(B) Demographic factors associated with 

6 CHD, such as age, race, ethnicity, gender, and 

7 family history of individuals who are diagnosed 

8 with the disease. 

9 ‘‘(C) Outcome measures, such that analysis 

10 of the outcome measures will allow derivation of 

11 evidence-based best practices and guidelines for 

12 CHD patients. 

13 ‘‘(2) PERMISSIBLE CONSIDERATIONS.—The study 

14 under this subsection may— 

15 ‘‘(A) gather data on the health outcomes of 

16 a diverse population of those affected by CHD; 

17 ‘‘(B) consider health disparities among 

18 those affected by CHD, which may include the 

19 consideration of prenatal exposures; and 

20 ‘‘(C) incorporate behavioral, emotional, and 

21 educational outcomes of those affected by CHD. 

22 ‘‘(3) PUBLIC ACCESS.—Data generated from the 

23 study under this subsection shall be made available— 

24 ‘‘(A) for purposes of CHD research, subject 

25 to appropriate protections of personal privacy, 


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1 including protections required by paragraph (4); 

2 and 

3 ‘‘(B) to the public, subject to paragraph (4) 

4 and with appropriate exceptions for protection of 

5 personal privacy. 

6 ‘‘(4) PATIENT PRIVACY.—The Secretary shall en7 sure that the study under this subsection is carried 

8 out in a manner that complies with the requirements 

9 applicable to a covered entity under the regulations 

10 promulgated pursuant to section 264(c) of the Health 

11 Insurance Portability and Accountability Act of 1996. 

12 ‘‘(c) ELIGIBILITY FOR GRANTS.—To be eligible to re13 ceive a grant under subsection (a)(2), an entity shall— 

14 ‘‘(1) be a public or private nonprofit entity with 

15 specialized experience in CHD; and 

16 ‘‘(2) submit to the Secretary an application at 

17 such time, in such manner, and containing such in18 formation as the Secretary may require. 

19 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

20 out this section, there is authorized to be appropriated 

21 $4,000,000 for each of fiscal years 2018 through 2022.’’. 

22 SEC. 3. CONGENITAL HEART DISEASE RESEARCH. 

23 Section 425 of the Public Health Service Act (42 

24 U.S.C. 285b–8) is amended to read as follows: 


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1 ‘‘SEC. 425. CONGENITAL HEART DISEASE. 

2 ‘‘(a) IN GENERAL.—The Director of the Institute may 

3 expand, intensify, and coordinate research and related ac4 tivities of the Institute with respect to congenital heart dis5 ease, which may include congenital heart disease research 

6 with respect to— 

7 ‘‘(1) causation of congenital heart disease, in8 cluding genetic causes; 

9 ‘‘(2) long-term outcomes in individuals with con10 genital heart disease, including infants, children, 

11 teenagers, adults, and elderly individuals; 

12 ‘‘(3) diagnosis, treatment, and prevention; 

13 ‘‘(4) studies using longitudinal data and retro14 spective analysis to identify effective treatments and 

15 outcomes for individuals with congenital heart dis16 ease; and 

17 ‘‘(5) identifying barriers to lifelong care for indi18 viduals with congenital heart disease. 

19 ‘‘(b) COORDINATION OF RESEARCH ACTIVITIES.—The 

20 Director of the Institute may coordinate research efforts re21 lated to congenital heart disease among multiple research 

22 institutions and may develop research networks. 

23 ‘‘(c) MINORITY AND MEDICALLY UNDERSERVED COM24 MUNITIES.—In carrying out the activities described in this 

25 section, the Director of the Institute shall consider the appliVerDate Sep 11 2014 21:38 Sep 25, 2017 Jkt 069200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6203 E:\BILLS\H1222.RH H1222

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1 cation of such research and other activities to minority and 

2 medically underserved communities. 

3 ‘‘(d) REPORT FROM NIH.—Not later than one year 

4 after the date of the enactment of the Congenital Heart Fu5 tures Reauthorization Act of 2017, the Director of NIH, act6 ing through the Director of the Institute, shall provide a 

7 report to Congress— 

8 ‘‘(1) outlining the ongoing research efforts of the 

9 National Institutes of Health regarding congenital 

10 heart disease; and 

11 ‘‘(2) identifying— 

12 ‘‘(A) future plans for research regarding 

13 congenital heart disease; and 

14 ‘‘(B) the areas of greatest need for such re15 search.’’. 


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Union Calendar No. 239 

115TH CONGRESS 

1ST SESSION H. R. 1222 

[Report No. 115–329] 

A BILL 

To amend the Public Health Service Act to coordipurposes. ness of congenital heart disease, and for other forts and to improve public education and aware- nate Federal congenital heart disease research efSEPTEMBER 25, 2017 

Reported with an amendment, committed to the Comand ordered to be printed mittee of the Whole House on the State of the Union, 


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