Congenital Diaphragmatic Hernia Research Act of 2012

Congenital Diaphragmatic Hernia Research Act of 2012 - Amends the Public Health Service Act to direct the Secretary of Health and Human Services (HHS) to carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia, including through: (1) the dissemination of information on the definition of Congenital Diaphragmatic Hernia and on good neonatal care of Congenital Diaphragmatic Hernia patients, (2) outreach to minority populations regarding Congenital Diaphragmatic Hernia, and (3) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

Requires the Director of the National Institutes of Health (NIH) to evaluate the amount of federal assistance provided for Congenital Diaphragmatic Hernia research at NIH to determine whether funding levels are adequate.

Expresses the sense of the Senate that the Director should consider allocating funds and other resources for Congenital Diaphragmatic Hernia research.

[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[S. 3396 Introduced in Senate (IS)]

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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Congenital Diaphragmatic Hernia 
Research Act of 2012''.

SEC. 2. FINDINGS.

    Congress finds as follows:
            (1) Congenital Diaphragmatic Hernia is a birth defect.
            (2) Congenital Diaphragmatic Hernia has a rate of 
        occurrence of 1 in every 2500 babies.
            (3) Congenital Diaphragmatic Hernia affects approximately 
        1600 babies each year in the United States.
            (4) Congenital Diaphragmatic Hernia occurs when the 
        diaphragm fails to fully form, allowing abdominal organs to 
        migrate into the chest cavity and preventing lung growth.
            (5) The majority of Congenital Diaphragmatic Hernia 
        patients have underdeveloped lungs or poor pulmonary function.
            (6) Congenital Diaphragmatic Hernia patients often endure 
        long-term complications such as pulmonary hypertension, 
        pulmonary hypoplasia, asthma, gastrointestinal reflex, feeding 
        disorders, and developmental delays.
            (7) Congenital Diaphragmatic Hernia survivors sometimes 
        endure long-term mechanical ventilation dependency, skeletal 
        malformations, supplemental oxygen dependency, enteral and 
        parenteral nutrition, and hypoxic brain injury.
            (8) Congenital Diaphragmatic Hernia has a survival rate of 
        50 percent.
            (9) Congenital Diaphragmatic Hernia has affected more than 
        600,000 babies worldwide since 2000.
            (10) Babies born with Congenital Diaphragmatic Hernia 
        endure extended hospital stays in intensive care with multiple 
        surgeries. Extended hospital stays in some cases have exceeded 
        1 year.
            (11) Congenital Diaphragmatic Hernia is as common as Spina 
        Bifida and Cystic Fibrosis.
            (12) Congenital Diaphragmatic Hernia is diagnosed in utero 
        in only 75 percent of cases.
            (13) Congenital Diaphragmatic Hernia is treated through 
        mechanical ventilation, heart and lung bypass (Extracorporeal 
        Membrane Oxygenation) machines and surgical repair.
            (14) Congenital Diaphragmatic Hernia surgical repair is 
        often outgrown thus leading to reherniation and requiring 
        additional surgery.
            (15) Congenital Diaphragmatic Hernia does not discriminate 
        based on race, gender, or socioeconomic status.
            (16) The cause of Congenital Diaphragmatic Hernia is 
        unknown.
            (17) The average hospital bill per Congenital Diaphragmatic 
        Hernia patient is $500,000.
            (18) The estimated total annual economic impact of 
        Congenital Diaphragmatic Hernia in the United States is in 
        excess of $800,000,000.
            (19) Annual Federal support for Congenital Diaphragmatic 
        Hernia research at the National Institutes of Health is 
        currently estimated at less than $4,000,000.

SEC. 3. NATIONAL CDH PUBLIC AWARENESS CAMPAIGN.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.) is amended by adding at the end the following:

``SEC. 399V-6. NATIONAL CDH PUBLIC AWARENESS CAMPAIGN.

    ``(a) In General.--The Secretary shall carry out a national 
campaign to increase public awareness and knowledge of Congenital 
Diaphragmatic Hernia.
    ``(b) Components of Campaign.--The measures to increase the public 
awareness and knowledge of Congenital Diaphragmatic Hernia under the 
national campaign under subsection (a) shall include--
            ``(1) the dissemination of information on the definition of 
        Congenital Diaphragmatic Hernia;
            ``(2) the dissemination of information on good neonatal 
        care of Congenital Diaphragmatic Hernia patients;
            ``(3) the outreach to minority populations regarding 
        Congenital Diaphragmatic Hernia; and
            ``(4) the promotion of good prenatal care and ultrasound to 
        detect Congenital Diaphragmatic Hernia in utero.
    ``(c) Evaluation.--The Director of the National Institutes of 
Health shall conduct an evaluation of the amount of Federal assistance 
provided for Congenital Diaphragmatic Hernia research at the National 
Institute for Health to determine whether funding levels are adequate.
    ``(d) Sense of the Senate.--It is the Sense of the Senate that the 
Director of the National Institutes of Health should consider 
allocating funds and other resources for Congenital Diaphragmatic 
Hernia research.''.
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