Florida Senate - 2013 CS for SB 124 By the Committee on Health Policy; and Senators Ring and Clemens 588-01568-13 2013124c1 1 A bill to be entitled 2 An act relating to newborn screening for critical 3 congenital heart disease; amending s. 383.14, F.S.; 4 requiring the Department of Health to adopt and 5 enforce rules that require ambulatory surgical 6 centers, hospitals, and birth centers in this state to 7 conduct screening for critical congenital heart 8 defects in all newborns by using certain technologies; 9 providing an effective date. 10 11 WHEREAS, congenital heart defects are structural 12 abnormalities of the heart which are present at birth. 13 Congenital heart defects range in severity from simple problems, 14 such as holes between chambers of the heart, to severe 15 malformations, such as the complete absence of one or more 16 chamber or valve. Some critical congenital heart defects can 17 cause severe and life-threatening symptoms that require 18 intervention within the first days of life, and 19 WHEREAS, congenital heart defects are the leading cause of 20 death of infants who have birth defects, and 21 WHEREAS, according to the United States Secretary of Health 22 and Human Services’ Advisory Committee on Heritable Disorders in 23 Newborns and Children, congenital heart defects affect between 24 seven and nine of every 1,000 live births in the United States 25 and Europe, and 26 WHEREAS, annual hospital costs in this country for all 27 individuals who have congenital heart disease have reached $2.6 28 billion, and 29 WHEREAS, current methods for detecting congenital heart 30 defects generally include prenatal ultrasound screening and 31 repeated clinical examinations that can identify many affected 32 newborns. These screenings identify less than half of all cases 33 of critical congenital heart defects, and many of these heart 34 defects are frequently missed during routine clinical exams 35 performed before a newborn’s discharge from an ambulatory 36 surgical center, hospital, or birth center, and 37 WHEREAS, pulse oximetry is a noninvasive test that 38 estimates the percentage of hemoglobin in blood which is 39 saturated with oxygen. When pulse oximetry is performed on a 40 newborn in a hospital or birth center, this test is effective in 41 detecting critical, life-threatening congenital heart defects 42 that otherwise go undetected by current screening methods, and 43 WHEREAS, newborns who have abnormal pulse oximetry results 44 require immediate confirmatory testing and intervention. Many 45 newborn lives could potentially be saved by earlier detection 46 and treatment of critical congenital heart defects if ambulatory 47 surgical centers, hospitals, and birth centers in this state 48 were required to perform the simple, noninvasive newborn 49 screening in conjunction with current methods of screening for 50 congenital heart defects, NOW THEREFORE, 51 52 Be It Enacted by the Legislature of the State of Florida: 53 54 Section 1. Subsection (2) of section 383.14, Florida 55 Statutes, is amended to read: 56 383.14 Screening for metabolic disorders, other hereditary 57 and congenital disorders, and environmental risk factors.— 58 (2) RULES.—After consultation with the Genetics and Newborn 59 Screening Advisory Council, the department shall adopt and 60 enforce rules requiring that every newborn in this state shall, 61 beforeprior tobecoming 1 week of age, be subjected to a test 62 for phenylketonuria and, at the appropriate age, be tested for 63 such other metabolic diseases and hereditary or congenital 64 disorders as the department may deem necessary from time to 65 time. The department shall also adopt and enforce rules that 66 require each ambulatory surgical center and hospital, as defined 67 in s. 395.002, and birth center, as defined in s. 383.302, which 68 provides maternity and newborn care services in this state, to 69 perform screening for critical congenital heart disease (CCHD) 70 by testing for low blood-oxygen saturation using pulse oximetry 71 or alternate peer-reviewed, evidence-based technologies on each 72 newborn after the first 24 hours of life or before a newborn is 73 discharged. After consultation with the Office of Early 74 Learning, the department shall also adopt and enforce rules 75 requiring every newborn in this state to be screened for 76 environmental risk factors that place children and their 77 families at risk for increased morbidity, mortality, and other 78 negative outcomes. The department shall adopt such additional 79 rules as are found necessary for the administration of this 80 section and s. 383.145, including rules providing definitions of 81 terms, rules relating to the methods used and time or times for 82 testing as accepted medical practice indicates, rules relating 83 to charging and collecting fees for the administration of the 84 newborn screening program authorized by this section, rules for 85 processing requests and releasing test and screening results, 86 and rules requiring mandatory reporting of the results of tests 87 and screenings for these conditions to the department. 88 Section 2. This act shall take effect July 1, 2013.