ERODING INVESTMENTS IN #1 KILLER OF BABIES – BIRTH DEFECTS

FEATURING: Marcia Feldkamp, PhD, PA, MSPH, Associate Professor, Department of Pediatrics, University of Utah, Salt Lake City, Utah

Ensuring a healthy start for our nation’s youngest children should be a priority. One in every 33 babies in the United States is born with a birth defect.i Birth defects are the leading cause of infant death—accounting for 1 out of 5 infant deaths—and also contribute substantially to illness and disability, yet the causes of about 70 percent of all birth defects remain unknown.ii Despite these disturbing statistics, the Centers for Disease Control and Prevention’s (CDC) birth defects research and prevention activities have seen a steady erosion of funding—18 percent since 2010.iii

In 1996, Congress directed CDC to conduct the National Birth Defects Prevention Study through regional Centers for Birth Defects Research and Prevention located at universities and health departments across the United States. These Centers have been conducting the largest study of birth defects ever undertaken. Learning the causes of birth defects is the first step in preventing them and this study provides a national infrastructure to examine and respond to emerging health concerns of pregnant women and infants. The large size and diversity of the population in the study has already led to major contributions to our understanding of the causes of birth defects, including providing information on the risk of birth defects associated with antidepressants.

BUDGET CUTS PUT BABIES AT RISK

However, funding constraints have forced the elimination of Centers for Birth Defect Research and Prevention in Utah and Texas. This reduction will significantly weaken the scientific capacity for birth defects research and diminish our national infrastructure to examine and respond to emerging health concerns of pregnant women and their infants.

Specifically, the elimination of the Utah and Texas Centers has resulted in 25 percent fewer families participating in the study and slowed the pace for investigating harms associated new medications for weight loss and e-cigarettes. Expertise related to medications used during pregnancy, environmental exposures, maternal infections, and birth defects risk among Hispanics from the previously funded Centers in Texas and Utah is no longer contributing to the study. In sum, short sighted funding decisions have reduced the scientific capacity for birth defects research in the United States.

Dr. Marcia Feldkamp understands too well the devastating impact of Congressional austerity measures. A joint effort between the Utah Department of Health, the University of Utah Health Sciences Center, and the University of Washington, the Utah Center for Birth Defect Research and Prevention Center had one of the highest participation rates in the National Birth Defects Prevention Study. Utah research strongly focused on congenital heart defects—which account for 25 percent of all birth defects in the stateiv—as well as gastroschisis (babies born with their intestines, and sometimes other abdominal organs, outside the abdomen)—which is on the rise for reasons unknownv—and cleft lip and palate. In fact, cleft lip and palate rates in Utah are some of the highest in the nation.vi Understanding the causes of these specific birth defects is vital to help find strategies to lower the risk of birth defects and help families have healthy babies. Loss of federal support for the Utah Center has resulted in reductions in staff and significantly diminished productivity. As Marcia explains:

The constant need to apply for and obtain new research funding takes more time away from the research that would have been conducted on a project that the Utah center had contributed to and participated in over the past 14 years.

In addition to their own research, the Utah investigators were working to train other young scientists in the field of birth defects research and prevention. Funding cuts now prevent any recruitment and mentoring activities. This will certainly have a devastating effect in this area of research for generations to come.


AUTHOR
March of Dimes

SOURCES
i National Center for Health Statistics, 2004 Period Linked Birth/Infant Death Data. Prepared by the Perinatal Data Center, 2008.

ii National Center for Health Statistics, 2004 Period Linked Birth/Infant Death Data. Prepared by the Perinatal Data Center, 2008.

iii U.S. House Report 111-366 (to accompany P.L. 111-117), Consolidated Appropriations Act, 2010, Washington: Government Printing Office, 2009, and U.S. Senate Report 113-71 (to accompany P.L. 113-76), FY2014 Omnibus, Washington: Government Printing Office, 2014.

iv Complete Indicator Report of Birth Defects: Congenital Heart Defects. Retrieved on April 29, 2014 from Utah Department of Health, Center for Health Data and Informatics, Indicator-Based Information System for Public Health website: http://ibis.health.utah.gov/.

v Complete Indicator Report of Birth Defects: Gastroschisis. Retrieved on April 29, 2014 from Utah Department of Health, Center for Health Data and Informatics, Indicator-Based Information System for Public Health website: http://ibis.health.utah.gov/.

vi Complete Indicator Report of Birth Defects: Orofacial Clefts. Retrieved on April 29, 2014 from Utah Department of Health, Center for Health Data and Informatics, Indicator-Based Information System for Public Health website: http://ibis.health.utah.gov/.