Home

CARES Foundation Continues Campaign to Expand

Newborn Screening

Ever since CARES began its work in 2001, one of its prime goals has been to ensure that all newborn babies are tested for CAH.  The importance of newborn screening for CAH, as well as 28 other heritable diseases, is emphasized in a recent report by the U.S. Department of Health and Human Services ( “Newborn Screening: Toward a Uniform Screening Panel System, Federal Register: 3/8/05).  Our efforts have been an uphill battle, but we are doing extremely well: In the past few months, Kentucky, Utah, and Nebraska have enacted measures to expand newborn screening. CARES Foundation will continue to offer its services to support these newborns and their families by working with the states’ Departments of Health.

Between July 1, 2005 and January 1, 2006, Kentucky will begin to expand its newborn screening panel to incorporate 29 additional disorders, including CAH.  In March, Governor Ernie Fletcher signed the newborn screening bill, and also set aside $1 million in tobacco settlement funds to help pay for the initial costs of the program.  In Utah, an expanded newborn screening panel which includes CAH will be fully implemented by January 1, 2006. Lawmakers in Utah mandated this expansion as a result of the advocacy efforts of CAH-affected families. In Nebraska, the Health and Human Services System Policy Cabinet approved adding CAH to its newborn screening panel and expects to begin screening in January of 2006.  In a letter from Nebraska Governor Dave Heineman to CARES Foundation, the Governor states that the "Newborn Screening Program will be working over the next several months to revise regulations and ensure quality education, testing, follow-up, diagnosis and treatment are in place to effectively meet the needs of newborns and their families."

In other states, the successes of past newborn screening campaigns are now being realized.  In California, where CARES members and other newborn screening advocates waged a successful campaign in 2004, the expanded newborn screening panel will be fully implemented this August.  In Oklahoma, the Newborn Screening Program of the Oklahoma State Department of Health, in collaboration with the Oklahoma University Department of Pediatrics, Section of Endocrinology, has not only expanded newborn screening to include CAH, but has committed to providing long-term follow-up services.  Effective February 14, 2005, the program offers a new resource of information, support, and advocacy, and plans to educate healthcare professionals as well. CARES members in Oklahoma should contact Kathy Kirk, Endocrinology Long-Term Follow-up Coordinator for CAH, at (405) 271-8001 ext. 43051, to learn more about the available services.

These lifesaving advances in CAH detection would never have come about were it not for CARES members. By giving their time and energy to provide testimony, write letters, and personally meet with state officials to make them aware of the need for screening newborns for CAH, these volunteers have been largely responsible for pushing newborn screening measures through the various state legislatures.  

Back to Spring 2005 Index

Top