In Support of Congressional Bill S.3396 for Congenital Diaphragmatic Hernia Research
  • Petitioned United States Senate, United States House of Representatives

This petition was delivered to:

United States Senate, United States House of Representatives
President of the United States
U.S. Senate
U.S. House of Representatives

In Support of Congressional Bill S.3396 for Congenital Diaphragmatic Hernia Research

    1. Petition by

      CHERUBS

1600 babies are born with Congenital Diaphragmatic Hernia every year in the United States. 800 do not survive. The cause is unknown and little research is being funded. These babies deserve a chance to live.

 

Congenital Diaphragmatic Hernia Research Bill

To amend the Public Health Service Act to provide for the national collection of data on babies born with Congenital Diaphragmatic Hernia in a standardized manner, 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 ‘CDH Research Act of 2011’.


SECTION 2. FINDINGS.

The 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 and/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%.
(9) Congenital Diaphragmatic Hernia has affected over 600,000 babies worldwide since the year 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 one 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% 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, religion, economic status or lack of prenatal care.

(16) The cause of Congenital Diaphragmatic Hernia is unknown.

(17) Congenital Diaphragmatic Hernia takes more lives in the average year in the United States than lightening strikes, tornadoes, hurricanes and floods combined.

(18) The average hospital bill per Congenital Diaphragmatic Hernia patient is $500,000.

(19) The estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000.
(20) Annual Federal support for Congenital Diaphragmatic Hernia research at the National Institutes of Health is currently estimated at less than $5,000,000.

SECTION 3. SENSE OF CONGRESS ON NIH FUNDING FOR CONGENITAL DIAPHRAGMATIC HERNIA RESEARCH.

(1) In General- It is the sense of the Congress that the Director of the National Institutes of Health should increase the allocation of funds and other resources for Congenital Diaphragmatic Hernia research.

(2) Measures To Increase the Research of Congenital Diaphragmatic Hernia shall include—

(a) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of finding commonalities in the search of possible causes and better treatments of Congenital Diaphragmatic Hernia.
(b) Funds for national CDH patient registries through current databases kept by research organizations such as The International Congenital Diaphragmatic Hernia Study Group and CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support for the purposes of researching the long term health of survivors of Congenital Diaphragmatic Hernia.

(c) Funds for genetic research into possible causes of Congenital Diaphragmatic Hernia.
(d) Funds for research into more successful surgical and neonatal medical procedures that may increase the survival rate of babies born with Congenital Diaphragmatic Hernia.

SECTION 4. NATIONAL PUBLIC AWARENESS CAMPAIGN.

(1) In General- The Secretary of Health and Human Services shall carry out a national campaign to increase public awareness and knowledge of Congenital Diaphragmatic Hernia

(2) Measures To Increase the Public Awareness of Congenital Diaphragmatic Hernia under the national campaign under subsection (1) shall include—

(a) the dissemination of information on the definition of Congenital Diaphragmatic Hernia;

(b) the dissemination of information on good neonatal care of Congenital Diaphragmatic Hernia patients; and

(c) the promotion of good prenatal care and ultrasound to detect Congenital Diaphragmatic Hernia in utero.

Recent signatures

    News

    1. Reached 10,000 signatures
    2. CDH Research Bill introduced to the Senate on July 18th.

      by CHERUBS

      On July 18th, almost exactly 3 months from CHERUBS CDH Awareness Day march on Capitol Hill, Senator Jeff Sessions introduced Senate Bill S.3396 on the floor. It is now in Committee. Please write all of the Senators on the Committee as well as your 2 state Senators! Signing the petition is wonderful but writing real letters, sharing your stories and photos will make the biggest impact!

      You can download sample letters, photo pages, the Bill and mailing address labels at http://www.cdhbills.org You can also view Senator Sessions introducing our Congenital Diaphragmatic Hernia Research Bill!

    3. Reached 5,000 signatures
    4. We are almost to our goal of 2000 signatures by Thanksgiving.

      by CHERUBS

      In just the past month we have gathered over 1300 signatures to help CDH babies. It's a wonderful start but we have a long way to go 10,000. Please help by signing, posting, blogging and tweeting to help raise CDH Awareness and research. The babies are counting on us.

    5. Reached 1,500 signatures
    6. We are now full-force in getting signatures to help babies born with CDH!

      by CHERUBS

      After a slow start because our charity was wrapped up in finishing other projects, we started aggressively pursuing signatures this week and collected 300 in just 2 days! WTG everyone! Please make sure to send a letter to your Congressman too!

    7. Reached 250 signatures

    Supporters

    Reasons for signing

    • Laura Henderson ST. PETERS, MO
      • about 1 year ago

      My unborn daughter has CDH and we will begin our fight for her life come July. Please support CDH research so that this birth defect can be prevented and cared for in the future.

      REPORT THIS COMMENT:
    • Tylitha Curles NEWARK, DE
      • about 1 year ago

      My friends lost their son to this birth defect.

      REPORT THIS COMMENT:
    • Kellie Cernobyl BEAR, DE
      • about 1 year ago

      My son was not a survivor of CDH.

      REPORT THIS COMMENT:
    • gail frober CHRISTMAS, FL
      • about 1 year ago

      Looks like a waste of time.

      REPORT THIS COMMENT:
    • Nathan Hartman ATLANTA, GA
      • over 1 year ago

      In honor of a dear friend and her beloved newborn child.

      REPORT THIS COMMENT:

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