Trust for America's Health Testimony to Texas Public Health Committee on State Birth Defects Registry

4/10/2003

From: Laura Segal of Trust for America's Health, 202-223-9870

WASHINGTON, April 10 -- The following is written testimony by Paul A. Locke, MPH, JD, DrPH for the Trust for America's Health, submitted to the House Committee on Public Health, Texas House of Representatives:

Thank you, Mr. Chairman for the opportunity to submit written testimony today. My name is Dr. Paul Locke. I am the Deputy Director of Internal Affairs and General Counsel at Trust for America's Health (TFAH), based in Washington, D.C. Trust for America's Health is a national non-profit organization whose mission is to protect the health and safety of all communities from current and emerging health threats by strengthening the fundamentals of our public health defenses. On behalf of TFAH, we appreciate the opportunity to submit testimony in support of HB 1097, legislation to make the Texas Birth Defects Registry mandatory. TFAH also asks that the Texas Legislature restore funding for the Texas Birth Defects Registry for the 2004-2005 biennium.

The mission of the Texas birth defects monitoring program is to protect and promote the health of the people of Texas by identifying and describing the patterns of birth defects in Texas and collaborating with others in finding causes of birth defects, working toward prevention, and linking families with services.

The Texas Birth Defects Registry does its job exceptionally well. In early 2002, TFAH released a report on which I served as the Principal Investigator, Birth Defects Tracking and Prevention: Too Many States Are Not Making the Grade. Each state was assigned a letter grade based on standards established in conjunction with the National Birth Defects Prevention Network (NBDPN). Texas was one of only eight states in the U.S. to receive an "A" grade, with 20 states falling into the "D" and "F" category. Prior year investments at the state and federal level have made the Texas birth defects registry a model for the nation.

In fact, Texas is only one of a handful of states chosen by the Centers for Disease Control and Prevention (CDC) to create a Center for Birth Defects Research and Prevention. This federal funding supplements existing resources appropriated by the Texas Legislature. Amending the 1993 law to require Texas to maintain its birth defects registry is an important acknowledgement of its central role in preventing birth defects. Accordingly, Trust for America's Health enthusiastically supports HB 1097. However, the proposed cuts in state funding put the Texas Birth Defects Registry at risk and may jeopardize ongoing funding from the CDC. Therefore, Trust for America's Health strongly opposes any reduction in state funds for the Texas Birth Defects Registry.

Birth defects are the leading cause of infant mortality in this nation and in Texas alone, more than 10,000 babies, or approximately 3.1 percent, are born with a major birth defect each year. According to the Texas Department of Health, birth defects account for nearly 25 percent of infant deaths before age one and are the fourth most common reason for pediatric hospitalization in Texas. Estimates indicate that Texas will spend $639 million in total lifetime costs to treat babies born with birth defects.

We understand that Texas, like so many states, is facing serious budget shortfalls due to a stagnant U.S. economy. We realize that resources are scarce. However, this is not the time to cut funds for a program that can have long-term cost savings implications. Prevention efforts are far less costly than treating serious birth defects over the course of a lifetime. Moreover, this legislature has made considerable investments in the State's birth defects registry since 1994, and to abandon this very successful program would be a serious step backwards with respect to the public health network in Texas and counter to the intent of the proposed legislation before the Committee today.

In fact, one of the greatest recent public health success stories had its roots in Texas. In 1991, an unusually large number of cases of neural tube defects in Cameron County prompted state and CDC researchers to launch investigations into possible genetic and environmental factors. Although research was never able to answer the question of what had caused six babies to be born in a six-week period with a form of anencephaly, a neural tube defect in which all or part of the brain is missing, the effort led the State of Texas to begin a statewide program to monitor birth defects. Ultimately, birth defect tracking and research led to a preventive strategy by helping uncover the link between folic acid deficiencies and neural tube disorders. The outcome? Since, folic acid fortification began in 1996, babies born with neural tube defects has decreased 19 percent.

That is why Trust for America's Health has a strong interest in the maintenance of high quality registries. These registries are essential in evaluating needs, delivering services and implementing prevention programs. They are also key tools in the creation of a strong state and national system of homeland security and public health defense. State surveillance efforts in Texas have helped to identify communities and populations at risk and reduce the overall incidence of birth defects.

Thank you for allowing me to submit testimony on behalf of Trust for America's Health. We appreciate the sound support the Texas Legislature has given the birth defects registry in the past. We respectfully ask that the Texas Legislature unanimously pass HB 1097 as soon as possible, followed by quick action by the Senate on SB 1285. In addition, we ask that the Texas Legislature restore funding for the State's Birth Defects Registry; it will mean a brighter and healthier future for children and families in Texas.