NEWBORN ADRENOLEUKODYSTROPHY House SponsorsRep. Laura Fine, Martin J. Moylan, Robyn Gabel, Deb Conroy, Stephanie A. Kifowit, Emily McAsey, Scott Drury, Michelle Mussman, Litesa E. Wallace, Anna Moeller, Sara Feigenholtz, Elizabeth Hernandez, Camille Y. Lilly, Carol Ammons, Carol Sente, Elaine Nekritz, Robert Martwick, Kelly M. Cassidy, Jaime M. Andrade, Jr., Will Guzzardi, Pamela Reaves-Harris, André Thapedi, Margo McDermed, Ed Sullivan, Barbara Wheeler, Michael P. McAuliffe, Raymond Poe, Mary E. Flowers, Kathleen Willis, Christian L. Mitchell, Kelly M. Burke, Dan Brady, Barbara Flynn Currie, Esther Golar, Eddie Lee Jackson, Sr., Cynthia Soto and Al Riley Senate Sponsors(Sen. Dale A. Righter-Heather A. Steans-Julie A. Morrison-Iris Y. Martinez, John G. Mulroe and Daniel Biss) 8/19/2015HousePublic Act . . . . . . . . . 99-0403 410 ILCS 240/3.4 new Amends the Newborn Metabolic Screening Act. Requires the Department of Public Health to provide all newborns with screening tests for the presence of adrenoleukodystrophy (ALD). Provides that testing shall begin within 12 months following the occurrence of various events, including: (1) the development and validation of a reliable methodology; (2) the availability of any necessary reagents; (3) the establishment and verification of relevant and appropriate performance specifications; (4) the availability of quality assurance testing; (5) the acquisition and installment of necessary equipment; (6) the establishment of precise threshold values ensuring defined disorder identification for ALD; (7) the authentication of pilot testing; and (8) the authentication of achieving the potential of high throughput standards. Allows the Department to implement an additional fee for the screening prior to beginning the testing in order to accumulate the resources for start-up and other costs associated with implementation of the screening and thereafter to support the costs associated with screening and follow-up programs for adrenoleukodystrophy.House Committee Amendment No. 1 Adds reference to:410 ILCS 240/2from Ch. 111 1/2, par. 4904Replaces everything after the enacting clause with the introduced bill. Makes the following changes: requires adrenoleukodystrophy testing to begin within 18 (instead of 12) months following the occurrence of certain events. Further amends the Newborn Metabolic Screening Act. Provides that beginning July 1, 2015, the base fee for newborn screening services shall be $118. Allows the Department of Public Health to levy additional fees according to a fee structure developed by the Department. Effective July 1, 2015.Senate Committee Amendment No. 1 Provides that any fee for a new genetic, metabolic, or congenital disorder screening for newborns, including adrenoleukodystrophy, may not be implemented sooner than 6 months prior to the beginning of testing. 2/20/2015HouseFiled with the Clerk by Rep. Laura Fine 2/20/2015HouseFirst Reading 2/20/2015HouseReferred to Rules Committee 3/2/2015HouseAssigned to Human Services Committee 3/17/2015HouseAdded Co-Sponsor Rep. Martin J. Moylan 3/17/2015HouseAdded Co-Sponsor Rep. Robyn Gabel 3/17/2015HouseAdded Co-Sponsor Rep. Deb Conroy 3/17/2015HouseAdded Co-Sponsor Rep. Stephanie A. Kifowit 3/17/2015HouseAdded Co-Sponsor Rep. Emily McAsey 3/17/2015HouseAdded Co-Sponsor Rep. Scott Drury 3/17/2015HouseAdded Co-Sponsor Rep. Michelle Mussman 3/17/2015HouseAdded Co-Sponsor Rep. Litesa E. Wallace 3/18/2015HouseAdded Co-Sponsor Rep. Anna Moeller 3/18/2015HouseAdded Co-Sponsor Rep. Sara Feigenholtz 3/18/2015HouseAdded Co-Sponsor Rep. Elizabeth Hernandez 3/18/2015HouseAdded Co-Sponsor Rep. Camille Y. Lilly 3/18/2015HouseAdded Co-Sponsor Rep. Carol Ammons 3/18/2015HouseAdded Co-Sponsor Rep. Carol Sente 3/18/2015HouseAdded Co-Sponsor Rep. Elaine Nekritz 3/18/2015HouseAdded Co-Sponsor Rep. Robert Martwick 3/18/2015HouseAdded Co-Sponsor Rep. Kelly M. Cassidy 3/18/2015HouseAdded Co-Sponsor Rep. Jaime M. Andrade, Jr. 3/19/2015HouseAdded Co-Sponsor Rep. Will Guzzardi 3/19/2015HouseAdded Co-Sponsor Rep. Pamela Reaves-Harris 3/19/2015HouseAdded Co-Sponsor Rep. André Thapedi 3/19/2015HouseAdded Co-Sponsor Rep. Margo McDermed 3/19/2015HouseAdded Co-Sponsor Rep. Ed Sullivan 3/19/2015HouseAdded Co-Sponsor Rep. Barbara Wheeler 3/19/2015HouseAdded Co-Sponsor Rep. Michael P. McAuliffe 3/19/2015HouseAdded Co-Sponsor Rep. Raymond Poe 3/19/2015HouseAdded Co-Sponsor Rep. Mary E. Flowers 3/19/2015HouseAdded Co-Sponsor Rep. Kathleen Willis 3/19/2015HouseAdded Co-Sponsor Rep. Christian L. Mitchell 3/19/2015HouseAdded Co-Sponsor Rep. Kelly M. Burke 3/19/2015HouseAdded Co-Sponsor Rep. Dan Brady 3/19/2015HouseAdded Co-Sponsor Rep. Barbara Flynn Currie 3/19/2015HouseAdded Co-Sponsor Rep. Esther Golar 3/19/2015HouseAdded Co-Sponsor Rep. Eddie Lee Jackson, Sr. 3/23/2015HouseHouse Committee Amendment No. 1 Filed with Clerk by Rep. Laura Fine 3/23/2015HouseHouse Committee Amendment No. 1 Referred to Rules Committee 3/24/2015HouseHouse Committee Amendment No. 1 Rules Refers to Human Services Committee 3/25/2015HouseHouse Committee Amendment No. 1 Adopted in Human Services Committee; by Voice Vote 3/25/2015HouseDo Pass as Amended / Short Debate Human Services Committee; 012-000-000 3/25/2015HousePlaced on Calendar 2nd Reading - Short Debate 3/25/2015HouseAdded Co-Sponsor Rep. Cynthia Soto 4/13/2015HouseAdded Co-Sponsor Rep. Al Riley 4/14/2015HouseSecond Reading - Short Debate 4/14/2015HousePlaced on Calendar Order of 3rd Reading - Short Debate 4/15/2015HouseThird Reading - Short Debate - Passed 114-001-000 4/15/2015SenateArrive in Senate 4/15/2015SenatePlaced on Calendar Order of First Reading April 16, 2015 4/15/2015SenateChief Senate Sponsor Sen. Dale A. Righter 4/16/2015SenateFirst Reading 4/16/2015SenateReferred to Assignments 4/22/2015SenateAssigned to Public Health 4/29/2015SenateAdded as Alternate Co-Sponsor Sen. Heather A. Steans 4/29/2015SenateSponsor Removed Sen. Heather A. Steans 4/29/2015SenateAdded as Alternate Chief Co-Sponsor Sen. Heather A. Steans 4/29/2015SenateAdded as Alternate Chief Co-Sponsor Sen. Julie A. Morrison 4/29/2015SenateAdded as Alternate Chief Co-Sponsor Sen. Iris Y. Martinez 4/30/2015SenateSenate Committee Amendment No. 1 Filed with Secretary by Sen. Dale A. Righter 4/30/2015SenateSenate Committee Amendment No. 1 Referred to Assignments 5/5/2015SenateSenate Committee Amendment No. 1 Assignments Refers to Public Health 5/6/2015SenatePostponed - Public Health 5/6/2015SenateSenate Committee Amendment No. 1 Postponed - Public Health 5/7/2015SenateAdded as Alternate Co-Sponsor Sen. John G. Mulroe 5/12/2015SenateSenate Committee Amendment No. 1 Adopted 5/13/2015SenateDo Pass as Amended Public Health; 007-000-000 5/13/2015SenatePlaced on Calendar Order of 2nd Reading May 14, 2015 5/14/2015SenateAdded as Alternate Co-Sponsor Sen. Daniel Biss 5/20/2015SenateSecond Reading 5/20/2015SenatePlaced on Calendar Order of 3rd Reading May 21, 2015 5/22/2015SenateThird Reading - Passed; 051-000-001 5/22/2015HouseArrived in House 5/22/2015HousePlaced on Calendar Order of Concurrence Senate Amendment(s) 1 5/25/2015HouseSenate Committee Amendment No. 1 Motion Filed Concur Rep. Laura Fine 5/25/2015HouseSenate Committee Amendment No. 1 Motion to Concur Referred to Rules Committee 5/26/2015HouseSenate Committee Amendment No. 1 Motion to Concur Rules Referred to Human Services Committee 5/27/2015HouseSenate Committee Amendment No. 1 Motion to Concur Recommends Be Adopted Human Services Committee; 013-000-000 5/31/2015HouseSenate Committee Amendment No. 1 House Concurs 111-000-000 5/31/2015HouseHouse Concurs 5/31/2015HousePassed Both Houses 6/29/2015HouseSent to the Governor 8/19/2015HouseGovernor Approved 8/19/2015HouseEffective Date August 19, 2015 8/19/2015HousePublic Act . . . . . . . . . 99-0403