II 

112TH CONGRESS 

2D SESSION S. 3396 

To amend the Public Health Service Act to provide for a national campaign 

to increase public awareness and knowledge of Congenital Diaphragmatic 

Hernia, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

JULY 18, 2012 

Mr. SESSIONS (for himself and Mr. CARDIN) introduced the following bill; 

which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To amend the Public Health Service Act to provide for 

a national campaign to increase public awareness and 

knowledge of Congenital Diaphragmatic Hernia, 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 Diaphrag5 matic Hernia Research Act of 2012’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds as follows: 


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1 (1) Congenital Diaphragmatic Hernia is a birth 

2 defect. 

3 (2) Congenital Diaphragmatic Hernia has a 

4 rate of occurrence of 1 in every 2500 babies. 

5 (3) Congenital Diaphragmatic Hernia affects 

6 approximately 1600 babies each year in the United 

7 States. 

8 (4) Congenital Diaphragmatic Hernia occurs 

9 when the diaphragm fails to fully form, allowing ab10 dominal organs to migrate into the chest cavity and 

11 preventing lung growth. 

12 (5) The majority of Congenital Diaphragmatic 

13 Hernia patients have underdeveloped lungs or poor 

14 pulmonary function. 

15 (6) Congenital Diaphragmatic Hernia patients 

16 often endure long-term complications such as pul17 monary hypertension, pulmonary hypoplasia, asth18 ma, gastrointestinal reflex, feeding disorders, and 

19 developmental delays. 

20 (7) Congenital Diaphragmatic Hernia survivors 

21 sometimes endure long-term mechanical ventilation 

22 dependency, skeletal malformations, supplemental 

23 oxygen dependency, enteral and parenteral nutrition, 

24 and hypoxic brain injury. 


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1 (8) Congenital Diaphragmatic Hernia has a 

2 survival rate of 50 percent. 

3 (9) Congenital Diaphragmatic Hernia has af4 fected more than 600,000 babies worldwide since 

5 2000. 

6 (10) Babies born with Congenital Diaphrag7 matic Hernia endure extended hospital stays in in8 tensive care with multiple surgeries. Extended hos9 pital stays in some cases have exceeded 1 year. 

10 (11) Congenital Diaphragmatic Hernia is as 

11 common as Spina Bifida and Cystic Fibrosis. 

12 (12) Congenital Diaphragmatic Hernia is diag13 nosed in utero in only 75 percent of cases. 

14 (13) Congenital Diaphragmatic Hernia is treat15 ed through mechanical ventilation, heart and lung 

16 bypass (Extracorporeal Membrane Oxygenation) ma17 chines and surgical repair. 

18 (14) Congenital Diaphragmatic Hernia surgical 

19 repair is often outgrown thus leading to reherniation 

20 and requiring additional surgery. 

21 (15) Congenital Diaphragmatic Hernia does not 

22 discriminate based on race, gender, or socioeconomic 

23 status. 

24 (16) The cause of Congenital Diaphragmatic 

25 Hernia is unknown. 


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1 (17) The average hospital bill per Congenital 

2 Diaphragmatic Hernia patient is $500,000. 

3 (18) The estimated total annual economic im4 pact of Congenital Diaphragmatic Hernia in the 

5 United States is in excess of $800,000,000. 

6 (19) Annual Federal support for Congenital Di7 aphragmatic Hernia research at the National Insti8 tutes of Health is currently estimated at less than 

9 $4,000,000. 

10 SEC. 3. NATIONAL CDH PUBLIC AWARENESS CAMPAIGN. 

11 Part P of title III of the Public Health Service Act 

12 (42 U.S.C. 280g et seq.) is amended by adding at the end 

13 the following: 

14 ‘‘SEC. 399V–6. NATIONAL CDH PUBLIC AWARENESS CAM15 PAIGN. 

16 ‘‘(a) IN GENERAL.—The Secretary shall carry out a 

17 national campaign to increase public awareness and 

18 knowledge of Congenital Diaphragmatic Hernia. 

19 ‘‘(b) COMPONENTS OF CAMPAIGN.—The measures to 

20 increase the public awareness and knowledge of Congenital 

21 Diaphragmatic Hernia under the national campaign under 

22 subsection (a) shall include— 

23 ‘‘(1) the dissemination of information on the 

24 definition of Congenital Diaphragmatic Hernia; 


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1 ‘‘(2) the dissemination of information on good 

2 neonatal care of Congenital Diaphragmatic Hernia 

3 patients; 

4 ‘‘(3) the outreach to minority populations re5 garding Congenital Diaphragmatic Hernia; and 

6 ‘‘(4) the promotion of good prenatal care and 

7 ultrasound to detect Congenital Diaphragmatic Her8 nia in utero. 

9 ‘‘(c) EVALUATION.—The Director of the National In10 stitutes of Health shall conduct an evaluation of the 

11 amount of Federal assistance provided for Congenital Dia12 phragmatic Hernia research at the National Institute for 

13 Health to determine whether funding levels are adequate. 

14 ‘‘(d) SENSE OF THE SENATE.—It is the Sense of the 

15 Senate that the Director of the National Institutes of 

16 Health should consider allocating funds and other re17 sources for Congenital Diaphragmatic Hernia research.’’. 

Æ 


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