Newborn Screening Bill Passes Congress
“We applaud Congress’ efforts on the passage of the Newborn Screening Saves Lives Reauthorization Act (NBSSLRA).
Thanks to their work, lives, such as those of children born with CAH will continue to be saved. CARES Foundation led the effort to add CAH testing to the newborn screening panel, resulting in each state having mandatory newborn screening for CAH. The NBSSLRA will continue to make a difference between life and death for 1 in 300 babies.”
For more information regarding the bill, visit: www.congress.gov/bill/113th-congress/house-bill/1281
As of July 2008, every state in the United States is screening for Congenital Adrenal Hyperplasia (CAH) at birth. Of the 13 provinces in Canada now five and a half – Manitoba, North West Territories, Ontario, Alberta, the western part of Nunavut and soon to be added British Columbia – have programs including CAH in their screening.
While we are celebrating victories for babies across North America, the fate of newborns affected by CAH around the globe remains ominous. Testing is available in 39 countries outside of the United States and Canada with Saudi Arabia being the most recent to begin CAH newborn screening. Screening is being done under a pilot program in Finland and a similar program is in the works for 2008 in Denmark and possibly Australia. Mandated testing for CAH however remains uncommon and often is not universally available even in those countries where testing has begun. For example, in Brazil, only the private sector is offering testing and in the United Kingdom, every infant is not being screened for CAH at birth, nor does the government require it. The time has come to change this.
CARES is working on an advocacy plan for these countries: reaching out to our members, professionals and other advocacy organizations. In those countries that do not mandate or have not as of yet implemented screening for CAH at birth, concerned residents can make an impact. Anyone interested in joining campaigns for CAH and comprehensive newborn screening should contact CARES Foundation with your name, address, telephone number and email address. Affected individuals and their families can truly help fellow sufferers of CAH by getting involved and urging the addition of CAH to newborn screening programs and the implementation of comprehensive newborn screening. Please take the time to write that letter or make that phone call. You can make a real difference in these children’s lives.
CARES Foundation, Inc. supports the concept of comprehensive and universal newborn screening. All children should be screened for all diseases that technology can provide for at this time. To learn more please read CARES’ Statement of Position on Newborn Screening.
To learn more about universal newborn screening, please read “A Case for Universal Newborn Screening” by attorney Charles Hehmeyer published in Exceptional Parent Magazine. All babies deserve the chance at a healthy start, and newborn screening can provide that healthy start for babies born with certain inherited disorders.