HLS 19RS-597 ORIGINAL 2019 Regular Session HOUSE CONCURRENT RESOL UTION NO. 33 BY REPRESENTATIVE DAVIS CHILDREN/NEWBORNS: Requests a study concerning potential inclusion in the state's newborn screening panel of all disorders listed on the federal Recommended Uniform Screening Panel 1 A CONCURRENT RESOL UTION 2To urge and request the Louisiana Department of Health to study the costs and benefits 3 associated with the potential inclusion of all conditions listed on the federal 4 Recommended Uniform Screening Panel in the newborn screening panel of this 5 state, and to report findings of the study to the legislative committees on health and 6 welfare. 7 WHEREAS, the Recommended Uniform Screening Panel (RUSP) is the set of 8conditions that the secretary of the United States Department of Health and Human Services 9recommends for inclusion in the newborn screening panel of each state; and 10 WHEREAS, disorders listed on the RUSP are selected based on evidence that 11supports the potential net benefit of screening, the ability of states to screen for the disorders, 12and the availability of effective treatments; and 13 WHEREAS, though the RUSP establishes a standardized list of disorders that has 14been vetted by the federal Advisory Committee on Heritable Disorders in Newborns and 15Children and recommended by the secretary of the federal health and human services 16agency, states ultimately determine which disorders are included in their respective newborn 17screening panels; and 18 WHEREAS, according to the Health Resources and Services Administration of the 19United States Department of Health and Human Services, most states screen for the majority 20of disorders on the RUSP and some states also screen for additional disorders; and Page 1 of 3 HLS 19RS-597 ORIGINAL HCR NO. 33 1 WHEREAS, certain states such as Florida have taken an incremental approach to 2including all RUSP-listed conditions in their state newborn screening panels by phasing in 3conditions over time; and 4 WHEREAS, the newborn screening panel of this state is established in R.S. 540:1081.2, which lists disorders for which all newborns in Louisiana must be screened and 6authorizes the Louisiana Department of Health to add conditions to this list by rule; and 7 WHEREAS, as of the date of filing of this Resolution, the RUSP encompasses at 8least twenty-two diseases and conditions that are not on Louisiana's newborn screening 9panel; these include Pompe disease, mucopolysaccharidosis type I, X-linked 10adrenoleukodystrophy, spinal muscular atrophy, isobutyrylglycinuria, 112-methylbutyrylglycinuria, medium-chain ketoacyl-CoA thiolase deficiency, 2,4 12dienoyl-CoA reductase deficiency, carnitine palmitoyltransferase deficiency (types I and II), 13carnitine acylcarnitine translocase deficiency, argininemia, citrullinemia type II, 14hypermethioninemia, benign hyperphenylalaninemia, biopterin defect in cofactor 15biosynthesis, biopterin defect in cofactor regeneration, tyrosinemia (types II and III), 16galactoepimerase deficiency, galactokinase deficiency, and T-cell related lymphocyte 17deficiencies; and 18 WHEREAS, the health and well-being of newborns is a vital public health priority 19of this state. 20 THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby 21urge and request the Louisiana Department of Health to study the costs and benefits 22associated with ultimately adding to the state newborn screening panel all conditions listed 23on the federal Recommended Uniform Screening Panel which are not presently included in 24the state panel. 25 BE IT FURTHER RESOLVED that in conducting the study called for in this 26Resolution, the department shall consider cost-effective and practicable options for 27achieving the goal of screening for all RUSP-listed conditions including, without limitation, 28a phase-in approach for adding conditions to the state's newborn screening panel such as that 29taken by Florida and other states. Page 2 of 3 HLS 19RS-597 ORIGINAL HCR NO. 33 1 BE IT FURTHER RESOLVED that in conducting the study requested in this 2Resolution, the department shall engage, collaborate with, and obtain information and 3perspective from stakeholder groups as deemed necessary or appropriate by the assistant 4secretary of the office of public health. 5 BE IT FURTHER RESOLVED that the department shall submit a written report of 6its findings resulting from the study requested in this Resolution to the House Committee 7on Health and Welfare and the Senate Committee on Health and Welfare on or before 8December 31, 2019. 9 BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the 10secretary of the Louisiana Department of Health. DIGEST The digest printed below was prepared by House Legislative Services. It constitutes no part of the legislative instrument. The keyword, one-liner, abstract, and digest do not constitute part of the law or proof or indicia of legislative intent. [R.S. 1:13(B) and 24:177(E)] HCR 33 Original 2019 Regular Session Davis Urges and requests the La. Department of Health (LDH) to study the costs and benefits associated with ultimately adding to the state newborn screening panel all conditions listed on the federal Recommended Uniform Screening Panel which are not presently included on the state panel. Requires LDH to submit a written report of findings resulting from the study to the legislative committees on health and welfare on or before December 31, 2019. Page 3 of 3