Over the past several months, CARES staff and membership have been engaged actively in supporting proposed newborn screening rule changes in Minnesota. (http://www.health.state.mn.us/news/pressrel/newbornscreen112106.html)
Unfortunately, a group pushing for opt-in screening – whereby parents would be asked if they want to have their children tested rather than given the option to say no to screening as the program allows under current law - is lobbying hard to kill these advances.
PLEASE send a letter to show your support of Minnesota Department of Health (MDH) proposed newborn screening program rule changes before February 12th to:
Judge Barbara Neilson
Office of Administrative Hearings
100 Washington Square, Suite 1700
Minneapolis, MN 55401-2138
E-mail: Barbara.Neilson@state.mn.us
A copy of the text of a letter CARES has sent appears below for your reference.
THANK YOU!
------------------------------------------------------------------------------------------------------------------
Re: Letter in Support of Proposed Rule Changes to Strengthen Newborn Screening
in Minnesota
I respectfully submit this letter in support of Minnesota Department of Health (MDH) proposed newborn screening progam rule changes as published in the November 20, 2006, State Register.
CARES Foundation, Inc. is a nonprofit organization that provides support to individuals affected by Congenital Adrenal Hyperplasia (CAH) and their families. Since 2001, I have served as its Executive Director. I am also the parent of a child with a form of CAH. I have seen the devastation that can occur when states do not screen for CAH and other diseases at birth nor offer comprehensive, universal, mandated screening as is available in Minnesota.
MDH’s proposed rule changes will both continue this tradition of excellence and further strengthen the state’s program by: providing the flexibility necessary to easily and effectively add new screens as they become available; clarify the roles of MDH, hospitals and health care providers; requiring a clear system of informed consent and further improving follow-up.
No one ever imagines their pregnancy and unborn child to be anything but normal and healthy. In the case of autosomal recessive diseases like CAH, where both parents must be carriers to have an affected child, there is rarely any family history to indicate potential for inheritance. If undetected at birth, CAH can lead to adrenal crisis and death. On the other hand, if CAH children are detected before adrenal crisis, then they will not need to receive state aid and will live completely normal lives. They will not become handicapped or suffer learning disabilities. Because most families would have no reason to suspect CAH as a potential problem, mandated newborn screening is invaluable.
On behalf of Minnesota’s children and families and over 2000 members of the CARES Community, I congratulate you on your successes to date and urge you to adopt these proposed rule changes immediately. The power to save lives in Minnesota is in your hands.