Senate Committee on Health, Education, Labor and Pensions
Subcommittee on Children and Families
June 14, 2002

The March of Dimes is pleased to submit comments on “Newborn Screening: Increasing Options and Awareness.” The March of Dimes, a unique partnership of scientists, clinicians, parents, members of the business community, and other volunteers with chapters in every state, the District of Columbia and Puerto Rico, is committed to preventing birth defects and ensuring healthy outcomes of all pregnancies through research, community services, education, and advocacy.

For more than 30 years, the Foundation has worked at the state and federal levels to establish and strengthen newborn screening programs. At the hearing on June 14, 2002, this Subcommittee heard oral testimony from a March of Dimes volunteer, Jill Wood of Fairfax, Virginia, about her family’s recent involvement in the successful March of Dimes advocacy effort to increase the number of newborn screening tests in Virginia. The Foundation applauds the Chairman and members of the Senate Subcommittee on Children and Families for holding this hearing to look at disparities between state newborn screening programs, the need for additional information for parents and health professionals, and ways the federal government can help improve current state newborn screening programs.

Background
A number of serious inherited disorders can be identified shortly after birth through newborn screening programs and treated early to prevent disability or life-threatening consequences. These tests, done shortly after birth, may mean the difference between a healthy life or a severe lifelong disability. March of Dimes grantees developed the first screening tests for phenylketonuria (PKU), biotinidase deficiency and congenital adrenal hyperplasia (CAH), and contributed to the development of tests for hypothyroidism.

Over the past 35 years, the success of newborn screening programs has made screening routine for the 4 million babies born each year in the United States. However, each state or region operates its own newborn screening program, therefore, individual programs vary in the number and types of conditions for which newborns are tested. Unfortunately, disparities among states in health screening tests mean that too many infants with serious birth defects are not being diagnosed and treated in time.

March of Dimes Policy
The March of Dimes supports the screening of newborns for specific conditions when there is a documented benefit to the child. Programs should assure high quality testing with state-of-the-art technology, trained personnel, resources for necessary follow-up and treatments, and public oversight by experienced health professionals. The Foundation recommends that every baby born in the United States and its territories receive, at a minimum, a core group of screening tests. Though more than 30 diseases can now be detected, the Foundation recommends starting with a core list of nine tests (in addition to newborn hearing screening) for which enough experience and data have been acquired to carry them out with confidence. They include phenlketonuria (PKU), congenital hypothyroidism, congenital adrenal hyperplasia (CAH), biotinidase deficiency, maple syrup urine disease, galactosemia, homocystinuria, sickle cell disease, and with recent technologic advances, medium-chain acyl-CoA dehydrogenase deficiency (MCAD). As new opportunities arise for screening and treatment, this core group of recommended tests will be expanded to include additional disorders. The March of Dimes recommends that all state programs be designed to attain at least this minimum standard, while encouraging the establishment of programs to test for more diseases as the expertise and resources become available. In addition, federal and state public health agencies are encouraged to work with health professionals and families to develop and maintain newborn screening systems that include appropriate follow-up and support. And finally, the March of Dimes will continue to work to ensure that parents and the general public are informed about the value of newborn screening programs.

Conclusion
The March of Dimes is working to develop national guidelines, create and disseminate educational materials, and increase federal funding so that every state can have the technical support and financial resources necessary to ensure that every child born in the United States has an equal opportunity for good health through screening, diagnosis and treatment.

To accomplish this goal, the March of Dimes supports an appropriation of $25 million for Fiscal Year 2003 to implement Title 26 of the Children’s Health Act of 2000 (P.L. 106-310) to expand current federal activities related to heritable disorders and newborn screening. This program is designed to strengthen states’ newborn screening programs; improve states’ ability to develop, evaluate, and acquire innovative testing technologies; and to establish and improve programs to provide screening, counseling, testing and special services for newborns and children at risk for heritable disorders. Funding for this program is especially important as states have already begun to screen for up to 30 conditions and this number likely will increase as detection technology and treatments advance.

In addition, the March of Dimes supports expanding federal activities related to educating health professionals, families and the general public about newborn screening. Parents are often unaware that the number and quality of newborn screening tests vary from state to state. Health professionals and laboratory personnel also need education and training related to evolving and expanding newborn screening technology. Currently, the March of Dimes is working with health professionals so that they can help educate parents about newborn screening programs, increase appreciation of the importance of these services, help improve compliance with diagnostic follow-up, and alert individuals who are at special risk for certain genetic diseases or who have experienced an unexplained infant death. Clearly, more needs to be done in this area and this hearing is an important step forward to address these issues.

In conclusion, March of Dimes volunteers and staff around the country stand ready to work with the members of this committee to ensure that health professionals, parents and the general public are better informed about the value of newborn screening, and to advocate on behalf of infants, children and their families to improve public policies and provide the resources necessary to support these vital public health programs.