Newborn Screening Update

Winter 2004 CARES Foundation, Inc.

Back to Winter 2004 Index	Home
Newborn Screening Update

Our grassroots advocacy in California is moving forward quickly! We printed postcards on Hot Pink paper addressed to Governor Schwarzenegger asking him to expand newborn screening to include CAH and "SAVE OUR BABIES". These were then signed by California residents and mailed to the Governor. Our members have distributed over 8,000 postcards so far! We are working in coalition with other groups, the Urea Cycle Disorders Foundation, PKU Southern California and the PKU Network. These groups liked our postcard idea so much that they have printed their own postcards asking the Governor to expand newborn screening! So, Governor Schwarzenegger is being inundated with neon colored postcards asking him to Save Our Babies! We still have a lot of postcards left, so if you can help distribute them, please call or email us and we will mail them out to you. While on vacation in California last month, I met with an aide to Governor Schwarzenegger about newborn screening. We met for over 1-1/2 hours and the aide told me that expanding screening was a "no brainer" and in line with the Governor’s current priorities. I felt quite confident that the Governor will address the issue, but funding will still be a problem. We need to keep up our advocacy efforts! Keep the cards and letters to the Governor coming! If you want to write personalized letters about the benefits newborn screening and your family’s experience without the screening, please write to:
The Honorable Arnold Schwarzenegger
Governor, State of California
State Capitol Building
Sacramento, CA 95814

Vermont added CAH to its screening panel along with several other disorders in November of 2003! Way to go Vermont! The Newborn Screening Program of the Oklahoma State Department of Health is moving forward with an expanded screening panel. Funds have been secured for the lab and follow-up program to hire staff and buy equipment. They plan to implement CAH newborn screening by July 1, 2004. Many thanks to all of the Vermont and Oklahoma families who called and wrote in support of expanded NBS. As you can see, our efforts are making a difference! We are saving babies, one state at a time!
Legislation/Appropriations Update: Newborn Screening Saves Lives Act
Senator Chris Dodds (CT) introduced the Newborn Screening Saves Lives Act on May 15, 2003, bill number S. 1068. This bill amends the Public Health Service Act to establish grant programs to provide for education and outreach on newborn screening and coordinated follow-up care once newborn screening has been conducted, and for other purposes. The co-sponsor is Senator Michael DeWine (OH). It was referred to the Senate Committee on Health, Education, Labor and Pensions. It has not moved. Please call your local US Senators and ask them to co-sponsor this important legislation. If you do not know who your US Senator is, you can look them up at www.senate.gov.
Reconstructive Surgery Act
The Reconstructive Surgery Act, sponsored by Congressman Mike Ross (AR), bill number HR. 1499 is pending in the Committee on Energy and Commerce, Subcommittee on Health, and in the Committee on Education and the Workforce Subcommittee on Employer-Employee Relations. It has 18 co-sponsors. This bill would require insurance companies to cover reconstructive surgeries performed to correct or repair abnormal structures of the body caused by congenital defects, or to improve functions or give patients a normal appearance to the extent possible in the judgment of the physician performing the surgery. Please call your Congressional Representative and urge him/her to sign on a co-sponsor of this legislation. You can find your Congressional representative at www.house.gov.

Genetic Information Nondiscrimination Act
Genetic Information Nondiscrimination Act of 2003, Senate bill number S. 1058 passed in the Senate on October 14, 2003 and was sent to the House of Representatives. This bill would prohibit discrimination on the basis of genetic information with respect to health insurance and employment. A comparable bill, sponsored by Congresswoman Louise Slaughter (NY) was introduced in the House in May 2003 and has 236 co-sponsors. The sponsors of the two pieces of legislation are trying to make changes to help this legislation move through the House quickly. Unfortunately, the Chambers of Commerce came out against this bill because they feel it would hurt employers. Please call your Congressional representatives, (look up at www.house.gov) and urge them to support this important legislation!
Appropriations
The FY 2004 Omnibus Appropriations bill passed in the Senate on January 22, 2004. In this bill, the NIH budget was given a 2.6% increase over last year for a total appropriation of $27.8 billion. The President has proposed a 2.7% increase for FY 2005. This poor appropriation for NIH means, essentially, that few new grants for research will be approved this year or next. We need to let President Bush know that this is unacceptable. In order to gain a better understanding of CAH, we need more research. This is devastating to our community. This bill also had a $2 million appropriation for grants to states for newborn screening improvement and expansion.

Back toWinter 2004 Index	Top	Home

© 2003 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.