Floor Statement Introduction of Newborn Screening Bill

FLOOR STATEMENT INTRODUCTION OF NEWBORN SCREENING BILL

Mr. President, I rise today, along with my colleague from Connecticut, Senator DODD, to introduce the "Newborn Screening Saves Lives Act of 2003" -- a bill designed to improve genetic newborn screening programs in this country. Our legislation would provide education grants for physicians and parents, as well as grants to states, to improve follow-up and tracking of those children who receive a positive result from a heelstick screening for metabolic, genetic, infectious, or other congenital conditions that threaten their health and well-being.

Mr. President, each year, newborn screening identifies an estimated 3,000 babies with conditions like sickle cell diseases and homocystinuria that, if left undetected, would otherwise have had dire consequences. But, despite their clear importance, our newborn screening systems are fragmented. Quite simply, all children do not have access to the same genetic tests. Where a child is born determines the tests that he or she receives. In my home state of Ohio, we test for 12 disorders, while right across the border in Kentucky, they test for only four, and in Pennsylvania, only six. In Massachusetts, on the other hand, newborns are tested for 29 disorders!

Compounding this problem, parents often are not sufficiently informed of the number of tests available in their individual states and what those tests can help accomplish. Physicians may not know to educate parents, or physicians may talk to parents too late in the birthing process for it to make a difference. Also, state health departments may not follow up adequately with the parents of a child who receives a positive test result, and health departments may not have the capacity to effectively record or track a large number of positive results.

The bill we are introducing today would go a long way toward streamlining the current newborn screening system by offering grants to states to accomplish the following:

· Build and expand existing procedures and systems to report test results to individuals and families, primary care physicians, and specialists;

· Coordinate ongoing follow-up treatment with individuals, families, and primary care physicians after a newborn receives an indication of the presence of a disorder on a screening test;

· Ensure seamless integration of confirmatory testing, tertiary care, genetic services (including counseling), and access to evolving therapies by participation in approved clinical trials involving the primary health care of the infant; and

· Analyze collected data to identify populations at high risk, examine and respond to health concerns, and recognize and address relevant environmental, behavioral, socioeconomic, demographic, and other factors.

Mr. President, Senator DODD and I recently requested that the General Accounting Office (GAO) examine state newborn screening programs. The results of this study were troubling. The GAO found that many children are not receiving critical, life-saving tests due, in part, to strained state budgets that cannot fund newborn screening initiatives.

The grant program established by our bill seeks to help states maintain and expand their newborn screening programs. Our legislation would be a good start toward ensuring that all newborns receive equal access to genetic tests and that their follow-up care, if needed, is available and coordinated. The importance of these screenings cannot be overstated. It can mean the difference between life and death for a newborn. And that, Mr. President, is something we must address.

I urge my colleagues to support this important children's health legislation.