[Congressional Record (Bound Edition), Volume 160 (2014), Part 8]
[House]
[Pages 10804-10807]
[From the U.S. Government Publishing Office, www.gpo.gov]




       NEWBORN SCREENING SAVES LIVES REAUTHORIZATION ACT OF 2014

  Mr. PITTS. Mr. Speaker, I move to suspend the rules and pass the bill 
(H.R. 1281) to amend the Public Health Service Act to reauthorize 
programs under part A of title XI of such Act, as amended.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                               H.R. 1281

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

     SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

       (a) Short Title.--This Act may be cited as the ``Newborn 
     Screening Saves Lives Reauthorization Act of 2014''.
       (b) Table of Contents.--The table of contents of this Act 
     is as follows:

Sec. 1. Short title; table of contents.
Sec. 2. Improved newborn and child screening and followup for heritable 
              disorders.
Sec. 3. Evaluating the effectiveness of newborn and child screening and 
              followup programs.
Sec. 4. Advisory Committee on Heritable Disorders in Newborns and 
              Children.
Sec. 5. Clearinghouse of Newborn Screening Information.
Sec. 6. Laboratory quality and surveillance.
Sec. 7. Interagency Coordinating Committee on Newborn and Child 
              Screening.
Sec. 8. National contingency plan for newborn screening.
Sec. 9. Hunter Kelly Research Program.
Sec. 10. Authorization of appropriations.
Sec. 11. Reports to Congress.

     SEC. 2. IMPROVED NEWBORN AND CHILD SCREENING AND FOLLOWUP FOR 
                   HERITABLE DISORDERS.

       Section 1109 of the Public Health Service Act (42 U.S.C. 
     300b-8) is amended--
       (1) in subsection (a)--
       (A) in the matter preceding paragraph (1)--
       (i) by striking ``subsection (j)'' and inserting ``section 
     1117''; and
       (ii) by striking ``and in consultation with the Advisory 
     Committee'' and inserting ``and taking into consideration the 
     expertise of the Advisory Committee'';
       (B) by amending paragraph (2) to read as follows:
       ``(2) to assist in providing health care professionals and 
     newborn screening laboratory personnel with education in 
     newborn screening, counseling, and training in--
       ``(A) relevant and new technologies in newborn screening 
     and congenital, genetic, and metabolic disorders;
       ``(B) the importance of the timeliness of collection, 
     delivery, receipt, and screening of specimens; and
       ``(C) sharing of medical and diagnostic information with 
     providers and families;'';
       (C) in paragraph (3), by striking ``and'' at the end;
       (D) in paragraph (4)--
       (i) by striking ``treatment'' and inserting ``followup and 
     treatment''; and
       (ii) by striking the period and inserting ``; and''; and
       (E) by adding at the end the following:
       ``(5) to improve the timeliness of--
       ``(A) the collection, delivery, receipt, and screening of 
     specimens; and
       ``(B) the diagnosis of heritable disorders in newborns.'';
       (2) in subsection (c), by striking ``application submitted 
     for a grant under subsection (a)(1)'' and inserting 
     ``application for a grant under this section'';
       (3) in subsection (h), by striking ``application submitted 
     under subsection (c)(2)'' each place it appears and inserting 
     ``application for a grant under this section''; and
       (4) by striking subsection (j) (relating to authorization 
     of appropriations).

     SEC. 3. EVALUATING THE EFFECTIVENESS OF NEWBORN AND CHILD 
                   SCREENING AND FOLLOWUP PROGRAMS.

       Section 1110 of the Public Health Service Act (42 U.S.C. 
     300b-9) is amended--
       (1) in the section heading, by inserting ``and followup'' 
     after ``child screening'';
       (2) in subsection (a), by striking ``of screening,'' and 
     inserting ``, including with respect to timeliness, of 
     screening, followup,'';
       (3) in subsection (b)--
       (A) in paragraph (1)--
       (i) by striking ``counseling, testing'' and inserting 
     ``treatment, counseling, testing, followup,''; and
       (ii) by inserting before the semicolon the following: ``, 
     including, as appropriate, through the assessment of health 
     and development outcomes for such children through 
     adolescence'';
       (B) in paragraph (2)--
       (i) by striking ``counseling, testing'' and inserting 
     ``treatment, counseling, testing, followup,'';
       (ii) by inserting ``in a timely manner'' after ``in 
     newborns and children''; and
       (iii) by striking ``or'' at the end;
       (C) in paragraph (3), by striking the period at the end and 
     inserting a semicolon; and
       (D) by adding at the end the following:
       ``(4) methods that may be identified to improve quality in 
     the diagnosis, treatment, and disease management of heritable 
     disorders based on gaps in services or care; or
       ``(5) methods or best practices by which the eligible 
     entities described in section 1109 can achieve in a timely 
     manner--
       ``(A) collection, delivery, receipt, and screening of 
     newborn screening specimens; and
       ``(B) diagnosis of heritable disorders in newborns.''; and
       (4) by striking subsection (d) (relating to authorization 
     of appropriations).

     SEC. 4. ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS 
                   AND CHILDREN.

       Section 1111 of the Public Health Service Act (42 U.S.C. 
     300b-10) is amended--
       (1) in subsection (b)--
       (A) by redesignating paragraphs (4) through (6) as 
     paragraphs (6) through (8), respectively;
       (B) by inserting after paragraph (3), the following:
       ``(4) provide technical assistance, as appropriate, to 
     individuals and organizations regarding the submission of 
     nominations to the uniform screening panel, including prior 
     to the submission of such nominations;
       ``(5) take appropriate steps, at its discretion, to prepare 
     for the review of nominations prior to their submission, 
     including for conditions for which a screening method has 
     been validated but other nomination criteria are not yet met, 
     in order to facilitate timely action by the Advisory 
     Committee once such submission has been received by the 
     Committee;'';
       (C) in paragraph (6) (as so redesignated), by inserting ``, 
     including the cost'' after ``public health impact''; and
       (D) in paragraph (8) (as so redesignated)--
       (i) in subparagraph (A), by striking ``achieve rapid 
     diagnosis'' and inserting ``achieve best practices in rapid 
     diagnosis and appropriate treatment'';
       (ii) in subparagraph (D), by inserting before the semicolon 
     ``, including information on cost and incidence'';
       (iii) in subparagraph (J), by striking ``and'' at the end;
       (iv) in subparagraph (K), by striking the period and 
     inserting ``; and''; and
       (v) by adding at the end the following:
       ``(L) the timeliness of collection, delivery, receipt, and 
     screening of specimens to be tested for heritable disorders 
     in newborns in order to ensure rapid diagnosis and 
     followup.'';
       (2) in subsection (d)--
       (A) in paragraph (1)--
       (i) by striking ``180'' and inserting ``120''; and
       (ii) by adding at the end the following: ``If the Secretary 
     is unable to make a determination to adopt or reject such 
     recommendation within such 120-day period, the Secretary 
     shall notify the Advisory Committee and the appropriate 
     committees of Congress of such determination together with an 
     explanation for why the Secretary was unable to comply within 
     such 120-day period, as well as a plan of action for 
     consideration of such pending recommendation.'';
       (B) by striking paragraph (2);
       (C) by redesignating paragraph (3) as paragraph (2); and
       (D) by adding at the end the following:
       ``(3) Deadline for review.--For each condition nominated to 
     be added to the recommended uniform screening panel in 
     accordance with the requirements of this section, the 
     Advisory Committee shall review and vote on the nominated 
     condition within 9 months of the date on which the Advisory 
     Committee referred the nominated condition to the condition 
     review workgroup.'';
       (3) by redesignating subsections (f) and (g) as subsections 
     (g) and (h), respectively;
       (4) by inserting after subsection (e) the following new 
     subsection:
       ``(f) Meetings.--The Advisory Committee shall meet at least 
     4 times each calendar year, or at the discretion of the 
     Designated Federal Officer in consultation with the Chair.'';
       (5) by amending subsection (g) (as so redesignated) to read 
     as follows:
       ``(g) Continuation of Operation of Committee.--
       ``(1) In general.--Notwithstanding section 14 of the 
     Federal Advisory Committee Act, the Advisory Committee shall 
     continue to operate through the end of fiscal year 2019.
       ``(2) Continuation if not reauthorized.--If at the end of 
     fiscal year 2019 the duration of the Advisory Committee has 
     not been extended by statute, the Advisory Committee may be 
     deemed, for purposes of the Federal Advisory Committee Act, 
     an advisory committee established by the President or an 
     officer of the Federal Government under section 9(a) of such 
     Act.''; and
       (6) by striking subsection (h) (relating to authorization 
     of appropriations), as redesignated by paragraph (3).

     SEC. 5. CLEARINGHOUSE OF NEWBORN SCREENING INFORMATION.

       Section 1112 of the Public Health Service Act (42 U.S.C. 
     300b-11) is amended--
       (1) in subsection (a)--
       (A) in paragraph (2), by striking ``and'' at the end;
       (B) in paragraph (3)--
       (i) by striking ``data'' and inserting ``information''; and
       (ii) by striking the period at the end and inserting a 
     semicolon; and
       (C) by adding at the end the following new paragraphs:
       ``(4) maintain current information on the number of 
     conditions for which screening is conducted in each State; 
     and

[[Page 10805]]

       ``(5) disseminate available evidence-based guidelines 
     related to diagnosis, counseling, and treatment with respect 
     to conditions detected by newborn screening.'';
       (2) in subsection (b)(4)(D), by striking ``Newborn 
     Screening Saves Lives Act of 2008'' and inserting ``Newborn 
     Screening Saves Lives Reauthorization Act of 2014'';
       (3) in subsection (c)--
       (A) by striking ``developing the clearinghouse'' and 
     inserting ``carrying out activities''; and
       (B) by striking ``clearinghouse minimizes duplication and 
     supplements, not supplants'' and inserting ``activities 
     minimize duplication and supplement, not supplant''; and
       (4) by striking subsection (d) (relating to authorization 
     of appropriations).

     SEC. 6. LABORATORY QUALITY AND SURVEILLANCE.

       Section 1113 of the Public Health Service Act (42 U.S.C. 
     300b-12) is amended--
       (1) in the section heading, by inserting ``and 
     surveillance'' before the period;
       (2) in subsection (a)--
       (A) in the matter preceding paragraph (1), by striking 
     ``and in consultation with the Advisory Committee'' and 
     inserting ``and taking into consideration the expertise of 
     the Advisory Committee''; and
       (B) in paragraph (1), by inserting ``timeliness for 
     processing such tests,'' after ``newborn-screening tests,''; 
     and
       (3) by striking subsection (b) (relating to authorization 
     of appropriations) and inserting the following:
       ``(b) Surveillance Activities.--The Secretary, acting 
     through the Director of the Centers for Disease Control and 
     Prevention, and taking into consideration the expertise of 
     the Advisory Committee on Heritable Disorders in Newborns and 
     Children established under section 1111, may provide, as 
     appropriate, for the coordination of surveillance activities, 
     including--
       ``(1) through standardized data collection and reporting, 
     as well as the use of electronic health records; and
       ``(2) by promoting data sharing regarding newborn screening 
     with State-based birth defects and developmental disabilities 
     monitoring programs.''.

     SEC. 7. INTERAGENCY COORDINATING COMMITTEE ON NEWBORN AND 
                   CHILD SCREENING.

       Section 1114 of the Public Health Service Act (42 U.S.C. 
     300b-13) is amended--
       (1) in subsection (c), by striking ``the Administrator, the 
     Director of the Agency for Healthcare Research and Quality,'' 
     and inserting ``the Administrator of the Health Resources and 
     Services Administration, the Director of the Agency for 
     Healthcare Research and Quality, the Commissioner of Food and 
     Drugs,''; and
       (2) by striking subsection (e) (relating to authorization 
     of appropriations).

     SEC. 8. NATIONAL CONTINGENCY PLAN FOR NEWBORN SCREENING.

       Section 1115(a) of the Public Health Service Act (42 U.S.C. 
     300b-14(a)) is amended--
       (1) by striking ``consortia'' and inserting ``consortium''; 
     and
       (2) by adding at the end the following: ``The plan shall be 
     updated as needed and at least every five years.''.

     SEC. 9. HUNTER KELLY RESEARCH PROGRAM.

       Section 1116 of the Public Health Service Act (42 U.S.C. 
     300b-15) is amended--
       (1) in subsection (a)(1)--
       (A) in subparagraph (B), by striking ``; and'' and 
     inserting a semicolon;
       (B) by redesignating subparagraph (C) as subparagraph (E); 
     and
       (C) by inserting after subparagraph (B) the following:
       ``(C) providing research findings and data for newborn 
     conditions under review by the Advisory Committee on 
     Heritable Disorders in Newborns and Children to be added to 
     the recommended uniform screening panel;
       ``(D) conducting pilot studies on conditions recommended by 
     the Advisory Committee on Heritable Disorders in Newborns and 
     Children to ensure that screenings are ready for nationwide 
     implementation; and''; and
       (2) in subsection (c), by striking ``of the National 
     Institutes of Health Reform Act of 2006''.

     SEC. 10. AUTHORIZATION OF APPROPRIATIONS.

       Part A of title XI of the Public Health Service Act (42 
     U.S.C. 300b-1 et seq.) is amended by adding at the end, the 
     following:

     ``SEC. 1117. AUTHORIZATION OF APPROPRIATIONS FOR NEWBORN 
                   SCREENING PROGRAMS AND ACTIVITIES.

       ``There are authorized to be appropriated--
       ``(1) to carry out sections 1109, 1110, 1111, and 1112, 
     $11,900,000 for each of fiscal years 2015 through 2019; and
       ``(2) to carry out section 1113, $8,000,000 for each of 
     fiscal years 2015 through 2019.''.

     SEC. 11. REPORTS TO CONGRESS.

       (a) GAO Report on Timeliness of Newborn Screening.--
       (1) In general.--Not later than 2 years after the date of 
     enactment of this Act, the Comptroller General of the United 
     States shall submit a report to the Committee on Health, 
     Education, Labor, and Pensions of the Senate and the 
     Committee on Energy and Commerce of the House of 
     Representatives concerning the timeliness of screening for 
     heritable disorders in newborns.
       (2) Contents.--The report submitted under paragraph (1) 
     shall include the following:
       (A) An analysis of information regarding the timeliness of 
     newborn screening, which may include the time elapsed from 
     birth to specimen collection, specimen collection to receipt 
     by laboratory, specimen receipt to reporting, reporting to 
     followup testing, and followup testing to confirmed 
     diagnosis.
       (B) A summary of any guidelines, recommendations, or best 
     practices available to States and health care providers 
     intended to support a timely newborn screening system.
       (C) An analysis of any barriers to maintaining a timely 
     newborn screening system which may exist and recommendations 
     for addressing such barriers.
       (b) Report by Secretary.--
       (1) In general.--The Secretary of Health and Human Services 
     shall--
       (A) not later than 1 year after the date of enactment of 
     this Act, submit to the Committee on Health, Education, 
     Labor, and Pensions of the Senate and the Committee on Energy 
     and Commerce of the House of Representatives a report on 
     activities related to--
       (i) newborn screening; and
       (ii) screening children who have or are at risk for 
     heritable disorders; and
       (B) not less than every 2 years, submit to such committees 
     an updated version of such report.
       (2) Contents.--The report submitted under this subsection 
     shall contain a description of--
       (A) the ongoing activities under sections 1109, 1110, and 
     1112 through 1115 of the Public Health Service Act; and
       (B) the amounts expended on such activities.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Pennsylvania (Mr. Pitts) and the gentleman from Texas (Mr. Gene Green) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Pennsylvania.


                             General Leave

  Mr. PITTS. Mr. Speaker, I ask unanimous consent that all Members may 
have 5 legislative days in which to revise and extend their remarks and 
insert extraneous materials into the Record on the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Pennsylvania?
  There was no objection.
  Mr. PITTS. Mr. Speaker, I yield myself such time as I may consume.
  I rise today in support of H.R. 1281, the Newborn Screening Saves 
Lives Reauthorization Act of 2014, introduced by Representative Lucille 
Roybal-Allard of California and Representative Mike Simpson of Idaho, 
which now includes 120 cosponsors.
  This bill amends the Public Health Service Act to extend and revise a 
grant program for screening, counseling, and other services related to 
genetic disorders. H.R. 1281 reauthorizes Federal programs that provide 
assistance to States to improve and expand their newborn screening 
programs, support parent and provider education, and ensure laboratory 
quality and surveillance.
  Newborn screening is an important public health program for testing 
every newborn for certain conditions not apparent at birth. This early 
screening and diagnosis can be life changing for these children and 
their families. I urge my colleagues to support this important 
legislation.
  I reserve the balance of my time.
  Mr. GENE GREEN of Texas. Mr. Speaker, I yield myself such time as I 
may consume.
  I rise in support of H.R. 1281, the Newborn Screening Saves Lives 
Reauthorization Act of 2014.
  Newborn screening is conducted for a number of genetic, metabolic, 
hormonal, and functional conditions that may not be apparent at birth. 
Approximately one in every 300 newborns has a condition that can be 
detected through screening. If diagnosed early, many of these disorders 
can be managed successfully.
  H.R. 1281 reauthorizes the Department of Health and Human Services' 
Advisory Committee that recommends conditions to be included in the 
uniform screening panel; allows the Advisory Committee to begin the 
consideration of certain new conditions more quickly; and requires the 
Secretary of HHS to make determinations on the committee's 
recommendations in a shorter period of time.
  The bill also extends support for State programs involving screening, 
counseling, education, and other services; demonstration programs to 
evaluate the effectiveness of services; and a clearinghouse of 
resources related to newborn screening.
  This legislation puts a new emphasis on the timeliness of newborn 
screening in all of these activities, and it requires the GAO to report 
to Congress on this issue.

[[Page 10806]]

  I want to thank the sponsors of this legislation, Congresswoman 
Roybal-Allard and Congressman Simpson; the sponsors of the Senate 
companion legislation, Senators Hagan and Hatch; and the leaders on the 
Energy and Commerce Committee and on the Health, Education, Labor, and 
Pensions Committee, for their work on this bill.
  I support H.R. 1281, and I urge my colleagues to support the 
legislation as well.
  I reserve the balance of my time.

                              {time}  1900

  Mr. PITTS. Mr. Speaker, I yield 1 minute to the distinguished 
gentleman from New York (Mr. Collins).
  Mr. COLLINS of New York. Mr. Speaker, I thank my colleague, 
Representative Roybal-Allard, for her leadership on this important 
issue.
  I come to the House floor tonight to speak in support of H.R. 1281, 
the Newborn Screening Saves Lives Reauthorization Act, which I am proud 
to cosponsor.
  For the last 50 years, newborn screening services have played an 
important role for families across the country. Screening for 
developmental disabilities or diseases at birth can identify treatable 
diseases early and give a child the opportunity to live a healthy life.
  I also want to take a moment to thank a leading advocate for newborn 
screening, Buffalo Bills Hall of Fame Quarterback Jim Kelly, who is 
from New York's 27th District.
  In 1997, Jim and his wife, Jill, founded Hunter's Hope Foundation 
shortly after their son Hunter was diagnosed with Krabbe disease. 
Krabbe disease is fatal when left untreated and, tragically, cut 
Hunter's life short.
  With universal newborn screening, the story of Hunter Kelly and 
countless others with developmental diseases could have been different.
  I urge the House to reauthorize this vital program today.
  Mr. GENE GREEN of Texas. Mr. Speaker, I yield as much time as she may 
consume to my colleague from California (Ms. Roybal-Allard). We came in 
at the same time in 1993.
  Ms. ROYBAL-ALLARD. Mr. Speaker, I rise in support of the Newborn 
Screening Saves Lives Reauthorization Act. I introduced this bill to 
help ensure our babies continuing receiving lifesaving newborn 
screenings.
  I extend my sincere thanks to my lead cosponsor, Congressman Michael 
Simpson, for his support and his long history of championing newborn 
screening services.
  I thank Senators Kay Hagan and Orrin Hatch for introducing the Senate 
companion bill, which passed by unanimous consent in January of this 
year.
  I also thank the coalition of public health groups--especially the 
March of Dimes and the Association of Public Health Laboratories--for 
working with my office over the last 10 years on this critical issue.
  Lastly, I would be remiss if I did not mention Debbie Jessup of my 
staff, for her outstanding management of my bill, and the work of two 
exceptional public health fellows, Arianna Baseman and Daphne Delgado, 
who provided strong leadership in moving the bill forward.
  Newborn screening is a public health intervention that involves 
giving babies a simple blood test to identify many life-threatening 
genetic and metabolic illnesses before symptoms begin. Newborn 
screening is one of the great public health success stories of the 20th 
century.
  Prior to the enactment of the original Newborn Screening Saves Lives 
Act in 2008, only 10 States and the District of Columbia required 
infants to be screened for a complete panel of recommended disorders, 
and there was no Federal repository of information on the diseases.
  Today, 44 States and the District of Columbia require screening of at 
least 29 of the 31 core treatable conditions. Today, professionals and 
parents have centralized access to newborn screening information when 
their baby is diagnosed with one of these disorders.
  Since the passage of the original bill, newborn screenings have 
improved, and new screenings have been added. These screenings are 
critical for the approximately 12,000 babies who, each year, test 
positive for one of these treatable diseases.
  Fifty years ago, before newborn screening tests were developed, the 
conditions of these babies would have gone undetected until symptoms 
appeared. As a result, they would have unnecessarily died or suffered 
from their lifelong disabling disorder.
  Today, because of newborn screening, they have an opportunity and 
they have hope for a relatively normal life.
  The ability to rapidly identify and treat these disorders is making a 
difference between health and disability--and even life or death--for 
the children affected by these severe diseases. Unfortunately, critical 
gaps and challenges still remain.
  Due to existing discrepancies in the number of tests given from State 
to State, each year, approximately 1,000 infants tragically die or are 
permanently disabled from otherwise treatable disorders.
  The passage of the Newborn Screening Saves Lives Reauthorization Act 
will help avoid these preventable tragedies by providing States with 
the resources they need to improve their newborn screening programs and 
to uniformly test for all recommended disorders.
  It also provides States with assistance in developing followup and 
tracking programs. These provisions will help our financially burdened 
health care system by saving billions of dollars over the life of these 
children.
  In addition, this bill renews the Secretary's Advisory Committee on 
Heritable Disorders and requires the CDC to ensure the quality of 
laboratories involved in newborn screening.
  The bill also continues the Hunter Kelly Newborn Screening Program, 
which helps NIH researchers develop better detection, prevention, and 
treatment strategies.
  Mr. Speaker, the Newborn Screening Saves Lives Reauthorization Act 
will continue to help parents and health providers to be knowledgeable 
about the importance of newborn screening tests, and it will help 
ensure all our newborn babies receive the comprehensive and consistent 
testing they need to have healthy, happy, and productive lives.
  Where a baby is born should not determine its chance to have a 
healthy future.
  I urge my colleagues to vote ``yes'' on the passage of H.R. 1281.
  Mr. PITTS. Mr. Speaker, I yield 3 minutes to the gentlewoman from 
Minnesota (Mrs. Bachmann).
  Mrs. BACHMANN. Mr. Speaker, I thank my colleague from Pennsylvania 
(Mr. Pitts), one of the greatest champions that this Chamber has ever 
seen in the cause of human life, and I share that cause with him as 
well.
  I thank the authors for their positive intentions on this bill. I am 
a mother of five biological children and 23 foster children, and that 
is what every parent and every mother and every father hopes, is to 
have the best possible health care for their children, the best 
possible outcome.
  I do share concerns on this bill as well, as well intentioned as this 
is, and let me just list what my concerns are.
  Number one, the Federal Government will have the ability to collect 
and automatically store the blood sample of every baby in the United 
States. There won't be any allowance for parental consent to be 
required before the storage of these blood samples are made.
  Every baby's DNA, which is the entire genetic code of that baby, will 
be under the control of the government.
  I have data privacy concerns. Why should anyone, especially our 
government, have everyone's identity at their disposal?
  Third, there is no provision for any parent to opt out, so this 
legislation presumes that every parent of every newborn in the United 
States of America pre-agrees that the government can have their baby's 
blood sample, which contains their DNA code, and that the government 
can indefinitely store that data.
  What limitations will there be on our government and what they can do 
with

[[Page 10807]]

this information and how they will handle this data?
  Now, Mr. Speaker, knowing that our government has the potential to 
control every American's health care under ObamaCare, how could 
government's control of a baby's DNA information impact the full access 
to health care or education opportunities or job opportunities for a 
child who is predetermined, by their DNA, to potentially have a problem 
later in life?
  These are just a few of the questions, Mr. Speaker, that I believe 
need to be addressed.
  I know this bill has passed the Senate. I know it will be voice-
voted. I would like to ask for a rollcall vote, but I understand that 
the process is already deep on its way.
  I do hope that these questions will be addressed in future 
legislation. It may not be done in this legislation. I hope it will be 
in the future because we should not be--Americans should not see the 
death of privacy, especially of the most sensitive private information 
that every American can have, their DNA, their genetic code, what God 
gave to them--that should be something that is between the individual, 
their doctor, and God; and it shouldn't be for the government to 
control that data.
  I want to thank Mr. Pitts. I, in no way, cast any negative aspersion 
upon himself or any of the authors on this bill. These are just some of 
the questions that I have.
  Mr. GENE GREEN of Texas. Mr. Speaker, I have no other speakers. I 
urge support for the legislation and yield back the balance of my time.
  Mr. PITTS. Mr. Speaker, I urge support, again, for this important and 
bipartisan legislation, and I yield back the balance of my time.
  Mr. SIMPSON. Mr. Speaker, I am proud to join with my friend and 
colleague from California, Congresswoman Roybal-Allard, to thank the 
House of Representatives and leaders on both sides of the aisle for 
their support of H.R. 1281, the Newborn Screening Saves Lives 
Reauthorization Act, which passed the House last night.
  In 2008, Congresswoman Roybal-Allard and I introduced the original 
Newborn Screening Saves Lives Act, which encouraged states to uniformly 
test for a recommended set of disorders and provided resources for 
states to expand and improve their screening programs.
  Before this legislation, state screening tests varied greatly, and 
only 10 states and DC required infants to be screened for all the 
``core conditions'' recommended by the Advisory Committee on Heritable 
Disorders in Newborns and Children.
  Today, most states require screening for at least 29 of the 31 
treatable core conditions.
  This bipartisan reauthorization builds upon the foundation of the 
original bill and ensures infants continue to receive comprehensive 
screenings--which consists of a simple prick on the heel of newborns 
before they leave the hospital.
  That blood sample tests for serious genetic, metabolic, or hearing 
disorders that may not be apparent at birth. Without this test, parents 
may have no way of knowing their child needs treatment.
  Mr. Speaker, the importance of newborn screening is undeniable.
  About one in every 300 newborns in the United States has a condition 
that can be detected through screening. Left untreated, these 
conditions can lead to serious illness, lifetime disabilities, or even 
death. These newborns appear healthy, but their conditions can 
deteriorate quickly and with no warning.
  In addition, newborn screening is a powerful tool for savings in our 
overburdened health care system. As a former dentist, I have seen the 
value of diagnosing and treating a condition early in a child's life.
  One example of the merit of newborn screening comes from a 2012 study 
on severe combined immunodeficiency, known as SCID. SCID is one of the 
31 conditions recommended for state screening.
  The Medicaid cost of treating a baby with SCID in the first two years 
can be $2 million or more. Yet an infant diagnosed early can be cured 
through a bone marrow transplant in the first three months of life, 
costing $100,000. Without the early intervention, families suffer 
enormous economic and emotional burdens.
  Mr. Speaker, I want to thank all those who have worked so hard to 
make this legislation a reality, particularly Congresswoman Roybal-
Allard, who has led the way in making this a reality, and the public 
health organizations who worked day and night to help move this bill 
through the process. I look forward to my Senate colleagues passing 
this important legislation and sending it to the President's desk.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Pennsylvania (Mr. Pitts) that the House suspend the 
rules and pass the bill, H.R. 1281, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill, as amended, was passed.
  A motion to reconsider was laid on the table.

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