Amendment to 5 CCR 1005-4, Newborn Screening and Second Newborn Screening

The Colorado Department of Public Health and Environment (CDPHE) is requesting that the Board of Health amend 5 CCR 1005-4 to remove Pompe disease screening. The CDPHE Newborn Screening Program previously planned to begin screening for Pompe disease on July 1, 2016. However, further analysis of the costs of screening for Pompe disease, as well as the existing newborn screening expenditures and revenues, it was determined that newborn screening for Pompe disease is not financially feasible at this time. Therefore, the department is recommending to Board of Health to remove Pompe disease from Colorado’s screening panel in order to allow additional time to reassess the financial impact of screening for Pompe disease and determine the necessity/amount of a fee increase. 

The department plans to continue assessing the impact of not adding Pompe disease to the panel and will return to the Board of Health in the summer of 2017 to either give the Board an update or to request that Pompe disease be added to the panel with a delayed implementation date. We remain committed to receiving your feedback and will include it in our fiscal and public health analyses. We will continue to provide you updates as appropriate. 

The rule making hearing is scheduled for April 20, 2016 at 10 am at CDPHE, 4300 Cherry Creek Dr., South, Denver, CO 80246. 

For further information: Please contact Erica Wright at 303-692-3482 or for questions or concerns