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 delay the initiation of Pompe disease screening. The CDPHE Newborn Screening Program previously planned to begin screening for Pompe disease on July 1, 2016. However, following further analysis of the costs of screening for Pompe as well as the existing newborn screening expenditures and revenues, it has been determined that newborn screening for Pompe disease is no longer financially feasible at this time. Therefore, we are requesting that the Board of Health allow us to delay the initiation of Pompe disease screening until July 1, 2019. This additional time will provide the Newborn Screening Program the necessary time to reassess the financial impact of screening for Pompe disease and determine the necessity/amount for a fee increase. 

Despite the increased cost, the department continues to recommend including Pompe disease on the panel. That said, in light of the new financial information, we want to ensure we fully understand the impact to parents, hospitals, providers, and health insurance carriers. We are committed to receiving your feedback and will be including it in our analysis and communications with the Board of Health. We will continue to provide you updates as appropriate. 

The rule request hearing is scheduled for February 17, 2016 at 10 am at CDPHE, 4300 Cherry Creek Dr., South, Denver, CO 80246 with the rule making hearing occurring on April 20, 2016. 

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