I 

115TH CONGRESS 

1ST SESSION H. R. 1222 

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 

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. 

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’’. 


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1 SEC. 2. NATIONAL CONGENITAL HEART DISEASE SURVEIL2 LANCE SYSTEM. 

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

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

5 ‘‘SEC. 399V–2. NATIONAL CONGENITAL HEART DISEASE RE6 SEARCH, SURVEILLANCE, AND AWARENESS. 

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

8 ‘‘(1) enhance and expand research and surveil9 lance infrastructure to study and track the epidemi10 ology of congenital heart disease (in this section re11 ferred to as ‘CHD’); 

12 ‘‘(2) plan and implement a public outreach and 

13 education campaign regarding CHD across the life14 span; and 

15 ‘‘(3) award grants to eligible entities to under16 take the activities described in subsections (b) and 

17 (c). 

18 ‘‘(b) NATIONAL CONGENITAL HEART DISEASE

19 STUDY.— 

20 ‘‘(1) IN GENERAL.—The Director of the Cen21 ters for Disease Control and Prevention shall plan, 

22 develop, implement, and submit one or more reports 

23 to the Congress on a study to improve under24 standing of the epidemiology of CHD across the life25 span, from birth to adulthood, with particular inter26 est in the following: 


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1 ‘‘(A) Health care utilization of those af2 fected by CHD. 

3 ‘‘(B) Demographic factors associated with 

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

5 family history of individuals who are diagnosed 

6 with the disease. 

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

8 of the outcome measures will allow derivation of 

9 evidence-based best practices and guidelines for 

10 CHD patients. 

11 ‘‘(2) PERMISSIBLE CONSIDERATIONS.—The 

12 study under this subsection may— 

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

14 a diverse population of those affected by CHD; 

15 ‘‘(B) consider health disparities among 

16 those affected by CHD, which may include the 

17 consideration of prenatal exposures; and 

18 ‘‘(C) incorporate behavioral, emotional, 

19 and educational outcomes of those affected by 

20 CHD. 

21 ‘‘(3) PUBLIC ACCESS.—Data generated from 

22 the study under this subsection shall be made avail23 able— 

24 ‘‘(A) for purposes of CHD research, sub25 ject to appropriate protections of personal priVerDate Sep 11 2014 04:19 Mar 01, 2017 Jkt 069200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H1222.IH H1222

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1 vacy, including protections required by para2 graph (4); and 

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

4 (4) and with appropriate exceptions for protec5 tion of personal privacy. 

6 ‘‘(4) PATIENT PRIVACY.—The Secretary shall 

7 ensure that the study under this subsection is car8 ried out in a manner that complies with the require9 ments applicable to a covered entity under the regu10 lations promulgated pursuant to section 264(c) of 

11 the Health Insurance Portability and Accountability 

12 Act of 1996. 

13 ‘‘(c) CONGENITAL HEART DISEASE AWARENESS

14 CAMPAIGN.— 

15 ‘‘(1) IN GENERAL.—The Director of the Cen16 ters for Disease Control and Prevention shall estab17 lish and implement an awareness, outreach, and 

18 education campaign regarding CHD across the life19 span. 

20 ‘‘(2) PERMISSIBLE ACTIVITIES.—The campaign 

21 under this subsection may— 

22 ‘‘(A) utilize collaborations or partnerships 

23 with other agencies, health care professionals, 

24 and patient advocacy organizations that speVerDate Sep 11 2014 04:19 Mar 01, 2017 Jkt 069200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1222.IH H1222

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1 cialize in the needs of individuals with CHD; 

2 and 

3 ‘‘(B) include the use of print, film, and 

4 electronic materials distributed via television, 

5 radio, Internet, or other commercial marketing 

6 venues. 

7 ‘‘(d) ELIGIBILITY FOR GRANTS.—To be eligible to re8 ceive a grant under subsection (a)(3), an entity shall— 

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

10 specialized experience in CHD; and 

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

12 such time, in such manner, and containing such in13 formation as the Secretary may require. 

14 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—To 

15 carry out this section, there is authorized to be appro16 priated $4,000,000 for each of fiscal years 2017 through 

17 2021.’’. 

18 SEC. 3. CONGENITAL HEART DISEASE RESEARCH. 

19 Section 425 of the Public Health Service Act (42 

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

21 ‘‘SEC. 425. CONGENITAL HEART DISEASE. 

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

23 may expand, intensify, and coordinate research and re24 lated activities of the Institute with respect to congenital 


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1 heart disease, which may include congenital heart disease 

2 research with respect to— 

3 ‘‘(1) causation of congenital heart disease, in4 cluding genetic causes; 

5 ‘‘(2) long-term outcomes in individuals with 

6 congenital heart disease, including infants, children, 

7 teenagers, adults, and elderly individuals; 

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

9 ‘‘(4) studies using longitudinal data and retro10 spective analysis to identify effective treatments and 

11 outcomes for individuals with congenital heart dis12 ease; and 

13 ‘‘(5) identifying barriers to lifelong care for in14 dividuals with congenital heart disease. 

15 ‘‘(b) COORDINATION OF RESEARCH ACTIVITIES.— 

16 The Director of the Institute may coordinate research ef17 forts related to congenital heart disease among multiple 

18 research institutions and may develop research networks. 

19 ‘‘(c) MINORITY AND MEDICALLY UNDERSERVED

20 COMMUNITIES.—In carrying out the activities described in 

21 this section, the Director of the Institute shall consider 

22 the application of such research and other activities to mi23 nority and medically underserved communities. 

24 ‘‘(d) REPORT FROM NIH.—Not later than 1 year 

25 after the date of enactment of the Congenital Heart FuVerDate Sep 11 2014 04:19 Mar 01, 2017 Jkt 069200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H1222.IH H1222

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1 tures Reauthorization Act of 2017, the Director of NIH, 

2 acting through the Director of the Institute, shall provide 

3 a report to Congress— 

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

5 the National Institutes of Health regarding con6 genital heart disease; and 

7 ‘‘(2) identifying— 

8 ‘‘(A) future plans for research regarding 

9 congenital heart disease; and 

10 ‘‘(B) the areas of greatest need for such 

11 research.’’. 

Æ 


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