WSR 17-01-046 PREPROPOSAL STATEMENT OF INQUIRY STATE BOARD OF HEALTH [Filed December 13, 2016, 1:59 p.m.]
Subject of Possible Rule Making: Chapter 246-650 WAC, Newborn screening, the Washington state board of health (board) is considering adding X-linked adrenoleukodystrophy (X-ALD) to the list of mandatory conditions for newborn screening (NBS) conducted by the department of health (department).
Reasons Why Rules on this Subject may be Needed and What They Might Accomplish: The board and the department convened an NBS advisory committee to evaluate X-ALD against a set of criteria for possible inclusion in the newborn screening panel in Washington state. The board accepted the NBS advisory committee's recommendation that X-ALD be included in the NBS panel. X-ALD is a deadly genetic disease that affects about one in eighteen thousand boys. Early diagnosis of X-ALD through NBS is the key to saving lives since without treatment most boys with the severe form of X-ALD will die before the age ten.
Other Federal and State Agencies that Regulate this Subject and the Process Coordinating the Rule with These Agencies: None.
Process for Developing New Rule: Collaborative; the board and the department used a multidisciplinary NBS advisory committee to evaluate whether X-ALD met the board's criteria for inclusion in the NBS panel. The board accepted the recommendation, and now wants to proceed with rule making to assure that rules are in place to allow the testing to occur.
Interested parties can participate in the decision to adopt the new rule and formulation of the proposed rule before publication by contacting Sierra Rotakhina, 101 Israel Road S.E., Tumwater, WA 98504, phone (360) 236-4106, fax (360) 236-4088, email sierra.rotakhina@sboh.wa.gov. Presentations to the board and the board's motion are available at the board's web site http://sboh.wa.gov.
December 13, 2016
Michelle A. Davis
Executive Director
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