HOUSE AMENDED
        PRIOR PRINTER'S NOS. 9, 2065                  PRINTER'S NO. 2213

THE GENERAL ASSEMBLY OF PENNSYLVANIA


SENATE BILL

No. 9 Session of 1991


        INTRODUCED BY HOLL, BRIGHTBILL, SALVATORE, ROBBINS AND DAWIDA,
           JANUARY 15, 1991

        AS RE-REPORTED FROM COMMITTEE ON RULES, HOUSE OF
           REPRESENTATIVES, AS AMENDED, MAY 18, 1992

                                     AN ACT

     1  Amending the act of September 9, 1965 (P.L.497, No.251),          <--
     2     entitled "An act requiring physicians, hospitals and other
     3     institutions to administer or cause to be administered tests
     4     for phenylketonuria and other metabolic diseases upon infants
     5     in certain cases," providing for tests for maple syrup urine
     6     disease.
     7  AMENDING THE ACT OF SEPTEMBER 9, 1965 (P.L.497, NO.251),          <--
     8     ENTITLED "AN ACT REQUIRING PHYSICIANS, HOSPITALS AND OTHER
     9     INSTITUTIONS TO ADMINISTER OR CAUSE TO BE ADMINISTERED TESTS
    10     FOR PHENYLKETONURIA AND OTHER METABOLIC DISEASES UPON INFANTS
    11     IN CERTAIN CASES," FURTHER PROVIDING FOR A NEWBORN CHILD
    12     SCREENING PROGRAM.

    13     The General Assembly of the Commonwealth of Pennsylvania
    14  hereby enacts as follows:
    15     Section 1.  Section 1 of the act of September 9, 1965          <--
    16  (P.L.497, No.251), entitled "An act requiring physicians,
    17  hospitals and other institutions to administer or cause to be
    18  administered tests for phenylketonuria and other metabolic
    19  diseases upon infants in certain cases," is amended to read:
    20     Section 1.  Every hospital or other institution caring for
    21  newborn infants, or any physician having in his care newborn

     1  infants shall administer or cause to be administered to every
     2  such infant in its or his care a test for phenylketonuria and
     3  maple syrup urine disease approved by the Advisory Health Board
     4  of the State Department of Health and tests for such other
     5  metabolic diseases of the newborn which may lead to mental
     6  retardation or physical defects and which may be approved by
     7  such Advisory Health Board. No such test shall be made if the
     8  parent or guardian of the newborn child dissents on the ground
     9  that the test conflicts with his religious beliefs or practices.
    10     Section 2.  This act shall take effect immediately.
    11     SECTION 1.  THE ACT OF SEPTEMBER 9, 1965 (P.L.497, NO.251),    <--
    12  ENTITLED "AN ACT REQUIRING PHYSICIANS, HOSPITALS AND OTHER
    13  INSTITUTIONS TO ADMINISTER OR CAUSE TO BE ADMINISTERED TESTS FOR
    14  PHENYLKETONURIA AND OTHER METABOLIC DISEASES UPON INFANTS IN
    15  CERTAIN CASES," IS AMENDED BY ADDING SECTIONS TO READ:
    16     SECTION 1.  SHORT TITLE.--THIS ACT SHALL BE KNOWN AND MAY BE
    17  CITED AS THE "NEWBORN CHILD TESTING ACT."
    18     SECTION 2.  DEFINITIONS.--THE FOLLOWING WORDS AND PHRASES
    19  WHEN USED IN THIS ACT SHALL HAVE THE MEANINGS GIVEN TO THEM IN
    20  THIS SECTION UNLESS THE CONTEXT CLEARLY INDICATES OTHERWISE:
    21     "BOARD."  THE STATE ADVISORY HEALTH BOARD IN THE DEPARTMENT
    22  OF HEALTH.
    23     "DEPARTMENT."  THE DEPARTMENT OF HEALTH OF THE COMMONWEALTH.
    24     "DISEASE."  DISEASES LISTED BY THE DEPARTMENT OF HEALTH BY
    25  REGULATION WHICH LEAD TO MENTAL RETARDATION OR PHYSICAL DEFECTS,
    26  INCLUDING WITHOUT LIMITATION PHENYLKETONURIA (PKU), MAPLE SYRUP
    27  URINE DISEASE (MSUD) AND SICKLE-CELL DISEASE
    28  (HEMOGLOBINOPATHIES).
    29     "HEALTH CARE PROVIDER."  A HEALTH CARE FACILITY OR HEALTH
    30  CARE PRACTITIONER AS DEFINED BY REGULATIONS OF THE DEPARTMENT OF
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     1  HEALTH.
     2     "NEWBORN CHILD."  A CHILD LESS THAN 28 DAYS OF AGE.
     3     "PROGRAM."  THE NEWBORN CHILD SCREENING AND FOLLOW-UP PROGRAM
     4  ADMINISTERED BY THE DEPARTMENT OF HEALTH.
     5     "REPEAT SPECIMEN."  A SECOND OR SUBSEQUENT BLOOD SPECIMEN
     6  COLLECTED FROM A NEWBORN CHILD FOR THE SAME PURPOSE.
     7     "UNACCEPTABLE SPECIMEN."  A NEWBORN CHILD'S BLOOD SPECIMEN
     8  WHICH IS NOT SUITABLE IN QUALITY OR QUANTITY TO PERFORM NEWBORN
     9  SCREENING OR CONFIRMATORY TESTING FOR ONE OR MORE OF THE
    10  DISEASES COVERED BY THIS ACT OR THE REGULATIONS PROMULGATED
    11  THEREUNDER.
    12     SECTION 2.  SECTION 1 OF THE ACT IS AMENDED TO READ:
    13     [SECTION 1.  EVERY HOSPITAL OR OTHER INSTITUTION CARING FOR
    14  NEWBORN INFANTS, OR ANY PHYSICIAN HAVING IN HIS CARE NEWBORN
    15  INFANTS SHALL ADMINISTER OR CAUSE TO BE ADMINISTERED TO EVERY
    16  SUCH INFANT IN ITS OR HIS CARE A TEST FOR PHENYLKETONURIA
    17  APPROVED BY THE ADVISORY HEALTH BOARD OF THE STATE DEPARTMENT OF
    18  HEALTH AND TESTS FOR SUCH OTHER METABOLIC DISEASES OF THE
    19  NEWBORN WHICH MAY LEAD TO MENTAL RETARDATION OR PHYSICAL DEFECTS
    20  AND WHICH MAY BE APPROVED BY SUCH ADVISORY HEALTH BOARD. NO SUCH
    21  TEST SHALL BE MADE IF THE PARENT OR GUARDIAN OF THE NEWBORN
    22  CHILD DISSENTS ON THE GROUND THAT THE TEST CONFLICTS WITH HIS
    23  RELIGIOUS BELIEFS OR PRACTICES.]
    24     SECTION 3.  NEWBORN CHILD SCREENING AND FOLLOW-UP PROGRAM.--
    25  (A)  IN ORDER TO ASSIST HEALTH CARE PROVIDERS TO DETERMINE
    26  WHETHER TREATMENT OR OTHER SERVICES ARE NECESSARY TO AVERT
    27  MENTAL RETARDATION, PERMANENT DISABILITIES OR DEATH, THE
    28  DEPARTMENT SHALL ESTABLISH A PROGRAM PROVIDING FOR:
    29     (1)  THE SCREENING TESTS OF NEWBORN CHILDREN FOR DISEASES.
    30     (2)  FOLLOW-UP SERVICES RELATING TO CONFIRMATORY TESTING,
    19910S0009B2213                  - 3 -

     1  ASSESSMENT AND DIAGNOSIS OF NEWBORN CHILDREN WITH ABNORMAL OR
     2  INCONCLUSIVE SCREENING REST RESULTS.
     3     (B)  THE DEPARTMENT, WITH THE ADVICE OF THE BOARD, SHALL
     4  ESTABLISH BY REGULATION THOSE DISEASES FOR WHICH NEWBORN
     5  CHILDREN SHALL BE TESTED AND THE METHODS FOR TESTING AND
     6  DISSEMINATING TEST RESULTS.
     7     (C)  NO SCREENING TEST SHALL BE PERFORMED IF A PARENT OR
     8  GUARDIAN DISSENTS ON THE GROUND THAT THE TEST CONFLICTS WITH A
     9  RELIGIOUS BELIEF OR PRACTICE.
    10     SECTION 3.  THE ACT IS AMENDED BY ADDING SECTIONS TO READ:
    11     SECTION 4.  PROCUREMENT OF SPECIMENS BY HEALTH CARE
    12  PROVIDERS.--(A)  HEALTH CARE PROVIDERS SHALL CAUSE TO BE
    13  PROCURED BLOOD SPECIMENS OF NEWBORN CHILDREN FOR REQUIRED
    14  SCREENING AND CONFIRMATORY TESTS, AND SEND SUCH SPECIMENS TO A
    15  TESTING LABORATORY DESIGNATED BY THE DEPARTMENT.
    16     (B)  IF THE INITIAL SPECIMEN IS AN UNACCEPTABLE SPECIMEN, OR
    17  AS OTHERWISE REQUIRED BY THE DEPARTMENT BY REGULATION, THE
    18  HEALTH CARE PROVIDER SHALL COLLECT A REPEAT SPECIMEN FOR
    19  SCREENING AND CONFIRMATORY TESTS.
    20     SECTION 5.  FEES.--THE DEPARTMENT, WITH THE ADVICE OF THE      <--
    21  BOARD, IS AUTHORIZED TO PROMULGATE REGULATIONS PROVIDING FOR THE
    22  COLLECTION OF FEES BY EACH HEALTH CARE PROVIDER WHO PROCURES
    23  BLOOD SPECIMENS UNDER THIS ACT.
    24     SECTION 6 5.  REGULATIONS.--THE DEPARTMENT SHALL HAVE THE      <--
    25  AUTHORITY TO PROMULGATE REGULATIONS FOR THE IMPLEMENTATION AND
    26  ADMINISTRATION OF THIS ACT.
    27     SECTION 4.  ANY REGULATIONS PROMULGATED UNDER THE ACT PRIOR
    28  TO THE EFFECTIVE DATE OF THIS AMENDATORY ACT SHALL CONTINUE AND
    29  REMAIN IN FULL FORCE AND EFFECT UNTIL REPEALED, SUPERSEDED OR
    30  SUPPLEMENTED BY REGULATIONS PROMULGATED UNDER THE AUTHORITY OF
    19910S0009B2213                  - 4 -

     1  THIS AMENDATORY ACT.
     2     SECTION 5.  THIS ACT SHALL TAKE EFFECT JULY 1, 1992.



















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