This is the letter that several people have been sent in response to the Krabbe screenings:
Sent: Friday, November 06, 2015 12:32 PM
Subject: Re: Krabbe Screening
Thank you for writing. The Department of Health will do everything in its power to ensure that babies with genetic diseases receive timely and appropriate care. We understand that these cases can be devastating for families, and are working diligently to implement the act efficiently and with compassion.
The law passed by the legislature calls for the Newborn Screening Advisory Committee to approve any newborn screening test changes before they are implemented. In the coming weeks, the Department will be meeting with the Committee to ensure we are moving forward to protect children and their families. The department cannot move forward without the approval of this committee. The plan is to begin testing in February 2015, pending approval of the committee.
Though the Krabbe legislation, which was signed into law in October 2014, called for implementation within 60 days, resources were not allocated to appropriately administer these screenings. While the budget impasse is ongoing, and adding these new screenings could cost up to $3 million dollars annually, we are looking at ways to begin approved testing regardless of the challenges.”
Please be assured that the Department is committed to improving the health of all Pennsylvania newborns.
Karen M. Murphy, PhD RN
Secretary of Health
Pennsylvania Department of Health
3 thoughts on “Response from Department of Health”
Thank you, Lisa, for bringing this to the public’s attention. It’s unbelievable that this was passed and STILL testing hasn’t been implemented. Thanks to the attention it’s getting now, hopefully children’s lives and their families heartbreak be saved from this wretched disease. God bless you and your little family. Gina
Everyone needs to contact their PA state representative and demand that this testing be implemented before the end of this year 2015. There is no excuse for this insanity. Three million dollars in the state budget is a drop in the bucket. Karen Murphy is incompetent and should be replaced as Secretary of Health over this fiasco. She should be ashamed. Google your representatives name and you will find his/her email address. You will get a response. Strength in numbers!
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This letter was written this November stating a goal for February 2015? Hum, I see a problem with that.