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A BILL TO BE ENTITLED
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AN ACT
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relating to newborn screening tests for adrenoleukodystrophy. |
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BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: |
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SECTION 1. The heading to Chapter 33, Health and Safety |
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Code, is amended to read as follows: |
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CHAPTER 33. ADRENOLEUKODYSTROPHY, PHENYLKETONURIA, OTHER HERITABLE |
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DISEASES, HYPOTHYROIDISM, AND CERTAIN OTHER DISORDERS |
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SECTION 2. Section 33.001, Health and Safety Code, is |
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amended to read as follows: |
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Sec. 33.001. DEFINITIONS. In this chapter: |
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(1) "Adrenoleukodystrophy" means an inherited |
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condition that results in an abnormality in the structure or |
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function of the brain and causes severe, life-threatening symptoms. |
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(2) "Birthing facility" means an inpatient or |
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ambulatory health care facility that offers obstetrical or newborn |
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care services. The term includes: |
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(A) a hospital licensed under Chapter 241 that |
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offers obstetrical services; |
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(B) a birthing center licensed under Chapter 244; |
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(C) a children's hospital; or |
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(D) a facility that provides obstetrical |
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services and is maintained and operated by this state or an agency |
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of this state. |
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(3) [(1-a)] "Critical congenital heart disease" means |
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an abnormality in the structure or function of the heart that exists |
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at birth, causes severe, life-threatening symptoms, and requires |
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medical intervention within the first few hours, days, or months of |
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life. |
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(4) [(1-b)] "Heritable disease" means an inherited |
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disease that may result in intellectual [mental] or physical |
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disability [retardation] or death. |
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(5) [(2)] "Hypothyroidism" means a condition that may |
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cause severe intellectual disability [mental retardation] if not |
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treated. |
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(6) [(3)] "Other benefit" means a benefit, other than |
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a benefit under this chapter, to which an individual is entitled for |
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the payment of the costs of services. The term includes: |
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(A) benefits available under: |
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(i) an insurance policy, group health plan, |
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or prepaid medical care plan; |
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(ii) Title XVIII of the Social Security Act |
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(42 U.S.C. Section 1395 et seq.); |
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(iii) Title XIX of the Social Security Act |
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(42 U.S.C. Section 1396 et seq.); |
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(iv) the United States Department of |
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Veterans Affairs; |
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(v) the TRICARE program of the United |
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States Department of Defense; or |
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(vi) workers' compensation or any other |
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compulsory employers insurance program; |
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(B) a public program created by federal or state |
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law or by ordinance or rule of a municipality or political |
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subdivision of the state, except those benefits created by the |
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establishment of a municipal or county hospital, a joint |
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municipal-county hospital, a county hospital authority, a hospital |
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district, or by the facilities of a publicly supported medical |
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school; and |
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(C) benefits resulting from a cause of action for |
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health care expenses, or a settlement or judgment based on the cause |
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of action, if the expenses are related to the need for services |
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provided under this chapter. |
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(7) [(4)] "Phenylketonuria" means an inherited |
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condition that may cause severe intellectual disability [mental
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retardation] if not treated. |
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(8) [(5)] "Screening test" means a rapid analytical |
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procedure to determine the need for further diagnostic evaluation. |
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SECTION 3. Sections 33.002(a) and (c), Health and Safety |
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Code, are amended to read as follows: |
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(a) The department shall carry out a program to combat |
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morbidity, including intellectual disability [mental retardation], |
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and mortality in persons who have adrenoleukodystrophy, |
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phenylketonuria, other heritable diseases, or hypothyroidism. |
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(c) The department shall establish and maintain a |
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laboratory to: |
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(1) conduct experiments, projects, and other |
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activities necessary to develop screening or diagnostic tests for |
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the early detection of adrenoleukodystrophy, phenylketonuria, |
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other heritable diseases, and hypothyroidism; |
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(2) develop ways and means or discover methods to be |
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used to prevent or treat adrenoleukodystrophy, phenylketonuria, |
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other heritable diseases, and hypothyroidism; and |
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(3) serve other purposes considered necessary by the |
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department to carry out the program. |
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SECTION 4. Section 33.011(a), Health and Safety Code, is |
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amended to read as follows: |
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(a) The physician attending a newborn child or the person |
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attending the delivery of a newborn child that is not attended by a |
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physician shall cause the child to be subjected to screening tests |
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approved by the department for adrenoleukodystrophy, |
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phenylketonuria, other heritable diseases, hypothyroidism, and |
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other disorders for which screening is required by the department. |
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SECTION 5. Section 33.014(a), Health and Safety Code, is |
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amended to read as follows: |
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(a) If, because of an analysis of a specimen submitted under |
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Section 33.011, the department reasonably suspects that a newborn |
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child may have adrenoleukodystrophy, phenylketonuria, another |
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heritable disease, hypothyroidism, or another disorder for which |
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the screening tests are required, the department shall notify the |
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person who submits the specimen that the results are abnormal and |
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provide the test results to that person. The department may notify |
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one or more of the following that the results of the analysis are |
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abnormal and recommend further testing when necessary: |
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(1) the physician attending the newborn child or the |
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physician's designee; |
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(2) the person attending the delivery of the newborn |
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child that was not attended by a physician; |
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(3) the parents of the newborn child; |
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(4) the health authority of the jurisdiction in which |
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the newborn child was born or in which the child resides, if known; |
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or |
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(5) physicians who are cooperating pediatric |
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specialists for the program. |
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SECTION 6. Section 33.031(a), Health and Safety Code, is |
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amended to read as follows: |
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(a) All newborn children and other individuals under 21 |
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years of age who have been screened, have been found to be |
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presumptively positive through the newborn screening program for |
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adrenoleukodystrophy, phenylketonuria, other heritable diseases, |
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hypothyroidism, or another disorder for which the screening tests |
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are required, and may be financially eligible may be referred to the |
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department's services program for children with special health care |
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needs. |
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SECTION 7. Section 33.032(a), Health and Safety Code, is |
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amended to read as follows: |
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(a) Within the limits of funds available for this purpose |
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and in cooperation with the individual's physician, the department |
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may provide services directly or through approved providers to |
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individuals of any age who meet the eligibility criteria specified |
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by department rules on the confirmation of a positive test for |
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adrenoleukodystrophy, phenylketonuria, other heritable diseases, |
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hypothyroidism, or another disorder for which the screening tests |
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are required. |
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SECTION 8. The heading to Chapter 1359, Insurance Code, is |
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amended to read as follows: |
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CHAPTER 1359. FORMULAS FOR INDIVIDUALS WITH ADRENOLEUKODYSTROPHY, |
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PHENYLKETONURIA, OR OTHER HERITABLE DISEASES |
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SECTION 9. Section 1359.001, Insurance Code, is amended to |
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read as follows: |
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Sec. 1359.001. DEFINITIONS. In this chapter: |
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(1) "Adrenoleukodystrophy" means an inherited |
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condition that results in an abnormality in the structure or |
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function of the brain and causes severe, life-threatening symptoms. |
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(2) "Heritable disease" means an inherited disease |
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that may result in intellectual [mental] or physical disability |
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[retardation] or death. |
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(3) [(2)] "Phenylketonuria" means an inherited |
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condition that, if not treated, may cause severe intellectual |
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disability [mental retardation]. |
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SECTION 10. Section 1359.003(a), Insurance Code, is amended |
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to read as follows: |
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(a) A group health benefit plan must provide coverage for |
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formulas necessary to treat adrenoleukodystrophy, phenylketonuria, |
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or a heritable disease. |
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SECTION 11. Section 203.355(c), Occupations Code, is |
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amended to read as follows: |
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(c) The laboratory services must include the performance of |
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the standard serological tests for syphilis and the collection of |
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blood specimens for newborn screening tests for |
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adrenoleukodystrophy, phenylketonuria, hypothyroidism, and other |
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heritable diseases as required by law. |
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SECTION 12. As soon as practicable after the effective date |
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of this Act, the Department of State Health Services shall |
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implement the changes in law made by this Act to the newborn |
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screening program under Chapter 33, Health and Safety Code. |
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SECTION 13. This Act takes effect September 1, 2017. |