In the Senate of the United States, 

December 12, 2018. 

Resolved, That the bill from the House of Representatives (H.R. 1222) entitled ‘‘An Act 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.’’, do pass with the following 

AMENDMENT: 

Strike all after the enacting clause and insert the 

following: 

1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Congenital Heart Fu3 tures Reauthorization Act of 2017’’. 

4 SEC. 2. NATIONAL CONGENITAL HEART DISEASE RE5 SEARCH, SURVEILLANCE, AND AWARENESS. 

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

7 U.S.C. 280g–13) is amended to read as follows: 
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1 ‘‘SEC. 399V–2. NATIONAL CONGENITAL HEART DISEASE RE2 SEARCH, SURVEILLANCE, AND AWARENESS. 

3 ‘‘(a) IN GENERAL.—The Secretary shall, as appro4 priate— 

5 ‘‘(1) enhance and expand research and data col6 lection efforts related to congenital heart disease, in7 cluding to study and track the epidemiology of con8 genital heart disease to understand health outcomes 

9 for individuals with congenital heart disease across 

10 all ages; 

11 ‘‘(2) conduct activities to improve public aware12 ness of, and education related to, congenital heart dis13 ease, including care of individuals with such disease; 

14 and 

15 ‘‘(3) award grants to entities to undertake the 

16 activities described in this section. 

17 ‘‘(b) ACTIVITIES.— 

18 ‘‘(1) IN GENERAL.—The Secretary shall carry 

19 out activities, including, as appropriate, through a 

20 national cohort study and a nationally-representative, 

21 population-based surveillance system, to improve the 

22 understanding of the epidemiology of congenital heart 

23 disease in all age groups, with particular attention 

24 to— 

25 ‘‘(A) the incidence and prevalence of con26 genital heart disease in the United States; 
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1 ‘‘(B) causation and risk factors associated 

2 with, and natural history of, congenital heart 

3 disease; 

4 ‘‘(C) health care utilization by individuals 

5 with congenital heart disease; 

6 ‘‘(D) demographic factors associated with 

7 congenital heart disease, such as age, race, eth8 nicity, sex, and family history of individuals 

9 who are diagnosed with the disease; and 

10 ‘‘(E) evidence-based practices related to care 

11 and treatment for individuals with congenital 

12 heart disease. 

13 ‘‘(2) PERMISSIBLE CONSIDERATIONS.—In car14 rying out the activities under this section, the Sec15 retary may, as appropriate— 

16 ‘‘(A) collect data on the health outcomes, in17 cluding behavioral and mental health outcomes, 

18 of a diverse population of individuals of all ages 

19 with congenital heart disease, such that analysis 

20 of the outcomes will inform evidence-based prac21 tices for individuals with congenital heart dis22 ease; and 

23 ‘‘(B) consider health disparities among in24 dividuals with congenital heart disease, which 
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1 may include the consideration of prenatal expo2 sures. 

3 ‘‘(c) AWARENESS CAMPAIGN.—The Secretary may 

4 carry out awareness and educational activities related to 

5 congenital heart disease in individuals of all ages, which 

6 may include information for patients, family members, and 

7 health care providers, on topics such as the prevalence of 

8 such disease, the effect of such disease on individuals of all 

9 ages, and the importance of long-term, specialized care for 

10 individuals with such disease. 

11 ‘‘(d) PUBLIC ACCESS.—The Secretary shall ensure 

12 that, subject to subsection (e), information collected under 

13 this section is made available, as appropriate, to the public, 

14 including researchers. 

15 ‘‘(e) PATIENT PRIVACY.—The Secretary shall ensure 

16 that the data and information collected under this section 

17 are made available in a manner that, at a minimum, pro18 tects personal privacy to the extent required by applicable 

19 Federal and State law. 

20 ‘‘(f) ELIGIBILITY FOR GRANTS.—To be eligible to re21 ceive a grant under subsection (a)(3), an entity shall— 

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

23 specialized experience in congenital heart disease; and 
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1 ‘‘(2) submit to the Secretary an application at 

2 such time, in such manner, and containing such in3 formation as the Secretary may require. 

4 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—To carry 

5 out this section, there are authorized to be appropriated 

6 $10,000,000 for each of fiscal years 2020 through 2024.’’. 

7 SEC. 3. REPORT. 

8 Not later than 3 years after the date of enactment of 

9 the Congenital Heart Futures Reauthorization Act of 2017, 

10 the Secretary of Health and Human Services shall submit 

11 to the Committee on Health, Education, Labor, and Pen12 sions of the Senate and the Committee on Energy and Com13 merce of the House of Representatives a report summarizing 

14 any activities carried out pursuant to section 399V–2 of 

15 the Public Health Service Act (as amended by section 2), 

16 including planned activities, and a summary of any re17 search findings and ongoing research efforts, gaps, and 

18 areas of greatest need within the Department of Health and 

19 Human Services regarding congenital heart disease in pa20 tients of all ages. 

Attest: 

Secretary. 
115TH CONGRESS 

2D SESSION H.R. 1222 

AMENDMENT