| Spring 2002 CARES Foundation, Inc. | |
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| Newborn Screening Update:
SENATORS DODD and DEWINE URGE REVIEW OF STATE NEWBORN SCREENING
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Recent Press Release, February, 2002: Washington, D.C. — Seeking to improve critical detection of potentially life-threatening genetic disorders in infants, Senators Chris Dodd, D-Conn., and Mike DeWine, R-Ohio, called for a study of each state's newborn screening programs in a recent letter to the General Accounting Office (GAO). The letter from Dodd, Chairman of the Senate Subcommittee on Children and Families, and DeWine, requested the GAO to report on individual state's efforts; how they test for disorders; the coordination among families, physicians, and laboratories involved; and the procedures and quality of data. The letter also asks for a report on how states protect the privacy of this sensitive and critical health information. "A child's health shouldn't be influenced by a line drawn on a map," said Dodd. "Newborn screening is a valuable tool in efforts to treat children's health problems, and - as such - we need to better explore how it is being implemented nationwide. This is one test where failing shouldn't be an option." "Newborn screening programs have unlimited potential. This is an excellent example of preventative medicine at its best and families in all states should be able to reap the benefits," said DeWine. "Clearly, detecting and treating disorders early in life produces tremendous benefits--by both decreasing the cost of care and increasing the quality of a child's life." About 3,000 infants screened each year are identified with having health conditions that could be harmful in the future. A few of the conditions that can be detected and potentially treated include hypothyroidism, phenylketonuria (PKU), and biotinidase deficiency. Some of the disorders can be treated simply by a change of diet or increase in certain vitamins, as long as the condition is caught at an early stage. Currently, each state develops and administers their own plan to check for disorders and the programs can vary greatly between states. At this time, there is no comprehensive data on the initiatives of each state. CARES Foundation has been in touch with Senator Dodd’s office about their efforts and will be working with them to ensure that any national plan includes Congenital Adrenal Hyperplasia. |
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M any thanks to the states that began newborn screening for CAH in January: Virginia, Arizona and Mississippi. However, some states that were supposed to begin newborn screening for CAH over the last couple of months have been delayed. Now, New York and Oregon are scheduled to begin in July. Missouri began screening on March 1st has had 3 true positive cases of CAH in 6 weeks! Montana has added the option of CAH newborn screening for a charge of $4.00. Ohio has delayed their meeting to discuss adding CAH newborn screening to sometime in June. Any Ohio parents who are willing to write letters or speak to the Health Department should contact CARES Foundation for more information. We may need you to help us be prepared for that June meeting.In California, the state has no plans to add CAH newborn screening for at least one year. Sadly, approximately 40 CAH babies will be born in CA over the next year and will risk adrenal crisis and even death. Any California parents willing to write letters to the Governor urging him to make newborn screening a priority to save these babies lives will really help. It is an election year and he cares about what people think. Tell him your story about the birth of your child in CA without newborn screening. Tell him how important newborn screening for CAH is. Consider reaching out to your local paper about doing an article on CAH newborn screening. You CAN make a difference! For information on how to contact the Governor, see information below.. |
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| The Honorable Gray Davis | |||||
| Office of the Governor of the State of California | |||||
| State Capitol Building | |||||
| Sacramento, CA 95814 | |||||
| Website: www.governor.ca.gov | |||||
| E-mail: governor@governor.ca.gov | |||||
| Phone: 916-445-2841 | |||||
| Fax: 916-445-4633 | |||||
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| © 2002 CARES Foundation, Inc. All rights reserved. Republication or redistribution of CARES content, including by framing or similar means, is prohibited without the prior written consent of CARES. | |||||