Newborn Screening Saves Lives Act of 2008

To amend the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated followup care once newborn screening has been conducted, to reauthorize programs under part A of title XI of such Act, and for other purposes.

4/8/2008--Reported to House amended. Newborn Screening Saves Lives Act of 2008 -
(Sec. 2) Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Administrator of the Health Resources and Services Administration (HRSA), to award grants to eligible entities to:
(1) provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders;
(2) provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel;
(3) develop and deliver educational programs about newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups; and
(4) establish, maintain, and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders.
(Sec. 3) Authorizes appropriations for FY2009-FY2013 for grants for demonstration programs to evaluate the effectiveness of screening, counseling, or health care services in reducing the morbidity and mortality caused by heritable disorders in newborns and children.
(Sec. 4) Expands the duties of the Advisory Committee on Heritable Disorders in Newborns and Children to include:
(1) making recommendations that include the heritable disorders for which all newborns should be screened;
(2) developing a model decision-matrix for newborn screening expansion; and
(3) considering ways to ensure that all states attain the capacity to screen for the recommended conditions. Sets forth deadlines for the Secretary to make a decision on Advisory Committee recommendations.
Requires the Advisory Committee to continue to operate during the five-year period beginning on the date of enactment of this Act.

(Sec. 5) Requires the Secretary, acting through the Administrator, to establish and maintain a central clearinghouse of current information on newborn screening. Sets forth requirements for such clearinghouse, including:
(1) ensuring that the clearinghouse is available on the Internet and is updated at least quarterly;
(2) providing links to websites that have expertise in newborn screening;
(3) providing information about newborn conditions and screening services available in each state;
(4) providing current research on conditions for which newborn screening tests are available; and
(5) providing the availability of federal funding for newborn and child screening for heritable disorders.

(Sec. 6) Requires the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to provide for:
(1) quality assurance for screening laboratories; and
(2) appropriate quality control and other performance test materials to evaluate the performance of new screening tools.
Requires the Secretary to establish an Interagency Coordinating Committee on Newborn and Child Screening to make recommendations on:
(1) programs to collect, analyze, and make available data on certain heritable disorders; and
(2) the establishment of regional centers to conduct applied epidemiological research on effective interventions for preventing poor health outcomes resulting from such disorders and to provide information and education to the public on such effective interventions.
(Sec. 7) Requires the Secretary, acting through the Director of CDC, to develop a national contingency plan for newborn screening in the event of a public health emergency. Authorizes the Secretary to continue to carry out, coordinate, and expand research in newborn screening (to be known as the Hunter Kelly Newborn Screening Research Program), including:
(1) identifying, developing, and testing the most promising new screening technologies; and
(2) experimental treatments and disease management strategies for conditions that can be detected through newborn screening for which treatment is not yet available.


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Sponsor

• Rep. Lucille Roybal-Allard [D, CA-34]
• and 81 Co-Sponsors
  • Rep. Neil Abercrombie [D, HI-1]
  • Rep. Thomas Allen [D, ME-1]
  • Rep. Michael Arcuri [D, NY-24]
  • Rep. Joe Baca [D, CA-43]
  • Rep. Tammy Baldwin [D, WI-2]
  • Rep. Xavier Becerra [D, CA-31]
  • Rep. Shelley Berkley [D, NV-1]
  • Rep. Robert Berry [D, AR-1]
  • Rep. Frederick Boucher [D, VA-9]
  • Rep. Michael Burgess [R, TX-26]
  • Rep. Shelley Capito [R, WV-2]
  • Rep. Lois Capps [D, CA-23]
  • Rep. Dennis Cardoza [D, CA-18]
  • Rep. Steve Cohen [D, TN-9]
  • Rep. Henry Cuellar [D, TX-28]
  • Rep. Danny Davis [D, IL-7]
  • Rep. Diana DeGette [D, CO-1]
  • Rep. Rosa DeLauro [D, CT-3]
  • Rep. John Duncan [R, TN-2]
  • Rep. Eliot Engel [D, NY-17]
  • Rep. Anna Eshoo [D, CA-14]
  • Rep. Chaka Fattah [D, PA-2]
  • Rep. Bob Filner [D, CA-51]
  • Rep. Vito Fossella [R, NY-13]
  • Rep. Charles Gonzalez [D, TX-20]
  • Rep. Barton Gordon [D, TN-6]
  • Rep. Kay Granger [R, TX-12]
  • Rep. Raymond Green [D, TX-29]
  • Rep. Raul Grijalva [D, AZ-7]
  • Rep. Luis Gutierrez [D, IL-4]
  • Rep. Alcee Hastings [D, FL-23]
  • Rep. Stephanie Herseth Sandlin [D, SD-0]
  • Rep. Brian Higgins [D, NY-27]
  • Rep. Maurice Hinchey [D, NY-22]
  • Rep. Rubén Hinojosa [D, TX-15]
  • Rep. Mazie Hirono [D, HI-2]
  • Rep. Michael Honda [D, CA-15]
  • Rep. Jesse Jackson [D, IL-2]
  • Rep. Henry Johnson [D, GA-4]
  • Rep. Patrick Kennedy [D, RI-1]
  • Rep. Nicholas Lampson [D, TX-22]
  • Rep. James Langevin [D, RI-2]
  • Rep. John Larson [D, CT-1]
  • Rep. Barbara Lee [D, CA-9]
  • Rep. John Lewis [D, GA-5]
  • Rep. Nita Lowey [D, NY-18]
  • Rep. Doris Matsui [D, CA-5]
  • Rep. Carolyn McCarthy [D, NY-4]
  • Rep. John McHugh [R, NY-23]
  • Rep. Michael McNulty [D, NY-21]
  • Rep. Dennis Moore [D, KS-3]
  • Rep. Tim Murphy [R, PA-18]
  • Rep. Grace Napolitano [D, CA-38]
  • Rep. Solomon Ortiz [D, TX-27]
  • Rep. Edward Pastor [D, AZ-4]
  • Rep. Steven Pearce [R, NM-2]
  • Rep. Deborah Pryce [R, OH-15]
  • Rep. James Ramstad [R, MN-3]
  • Rep. Thomas Reynolds [R, NY-26]
  • Rep. Laura Richardson [D, CA-37]
  • Rep. Ciro Rodriguez [D, TX-23]
  • Rep. Steven Rothman [D, NJ-9]
  • Rep. Bobby Rush [D, IL-1]
  • Rep. Timothy Ryan [D, OH-17]
  • Rep. John Salazar [D, CO-3]
  • Rep. Linda Sanchez [D, CA-39]
  • Rep. Loretta Sanchez [D, CA-47]
  • Rep. Janice Schakowsky [D, IL-9]
  • Rep. Adam Schiff [D, CA-29]
  • Rep. José Serrano [D, NY-16]
  • Rep. Christopher Shays [R, CT-4]
  • Rep. Michael Simpson [R, ID-2]
  • Rep. Albio Sires [D, NJ-13]
  • Rep. Hilda Solis [D, CA-32]
  • Rep. John Spratt [D, SC-5]
  • Rep. Fortney Stark [D, CA-13]
  • Rep. Ellen Tauscher [D, CA-10]
  • Rep. Edolphus Towns [D, NY-10]
  • Rep. Nydia Velazquez [D, NY-12]
  • Rep. Debbie Wasserman Schultz [D, FL-20]
  • Rep. Henry Waxman [D, CA-30]
  close

Committees

• House Energy and Commerce
• 1 more
  • House Energy and Commerce
  close

Amendments

This bill has no amendments.

Amendments to H.R.3825

Number	Status	Purpose

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Introduced		Voted on by House		Voted on by Senate		Considered By President		Bill Becomes Law
October 15, 2007

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All Bill Actions

• Apr 08, 2008: Reported (Amended) by the Committee on Energy and Commerce. H. Rept. 110-570.
• Added to calendar on Apr 08, 2008: Placed on the Union Calendar, Calendar No. 352..
• Added to calendar on Mar 13, 2008: Ordered to be Reported (Amended) by Voice Vote..
• Mar 13, 2008: Committee Consideration and Mark-up Session Held.
• Mar 11, 2008: Forwarded by Subcommittee to Full Committee (Amended) by Voice Vote .
• Mar 11, 2008: Subcommittee Consideration and Mark-up Session Held.
• Oct 16, 2007: Referred to the Subcommittee on Health.
• Oct 15, 2007: Referred to the House Committee on Energy and Commerce.
• Introduced on Oct 15, 2007.

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• S.1858

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In the News

April 12, 2008 What Legislature should -- and shouldn't -- do

It is ironic that on April 9, Congress finalized the Newborn Screening Saves Lives Act of 2008 (HR 3825/S. 1858). President Bush is expected to sign it. ...

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Source: MiamiHerald.com, FL

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April 08, 2008 UPDATE: Newborn Testing Bill passes House of Representatives

In the House of Representatives, the bill (HR 3825) was sponsored by Representatives Lucille Roybal-Allard (D-CA), Mike Simpson (R-ID), Tom Reynolds (R-NY), ...

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Source: WIVB

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April 08, 2008 Pro Football Hall of Fame Member Jim Kelly Urges Congress to ...

In the House of Representatives, the bill (HR 3825) was sponsored by Representatives Lucille Roybal-Allard (D-CA), Mike Simpson (R-ID), Tom Reynolds (R-NY), ...

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Blog Coverage

May 27, 2008 Newborn-Blood Storage Law Stirs Fears of DNA Warehouse

The Newborn Screening Saves Lives Act of 2007 (S.1858/HR 3825), signed into law on April 24, empowers a committee to provide guidelines to all states on how -- and for how long -- they should store blood. At present, all states store ...

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Source: Nursing Informatics Online

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May 22, 2008 Newborn Screening Saves Lives Act (HR 3825)

As stated in the title of my post here it is in fact HR 3825. 1858 is the nearly identical Senate bill. This link will take you to GovTrack.us, which I've discovered hosts some links to blogs written and maintained by political ...

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Source: <br>

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May 21, 2008 Newborn Blood-Storage Law Stirs Fears of DNA Warehouse

The Newborn Screening Saves Lives Act of 2007 (S.1858/HR 3825), signed into law on April 24, will provide guidelines to all states on how -- and for how long -- they should store blood. At present, all states store blood from all ...

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Source: GlobalSpec - Engineering News - Today's...

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