Birth defects are the leading cause of death among infants in the US. This is without a doubt a major public health issue, one that should be tackled head-on. We desperately need to understand the causes of birth defects, and develop strategies to reduce their incidence. But that’s not what we’re doing.
Without Gov’t Support, Birth Defect Research Centers Shut Doors
Out of the $66 billion budgeted for Medicare and health research in 2015, only 0.002% went to birth defect research. Funding for birth defect initiatives has been decreasing across the board for decades. Between 2010 and 2014, the Centers for Disease Control lost almost 20% of the funding that would have gone to research and prevention initiatives around congenital abnormalities, abnormalities that may very well cause 3.3 million infant deaths across the world.
Thanks to 14 proactive state birth defect surveillance programs, and an additional eight federally-funded research centers, we’ve learned a good deal about the causes of birth defects. The Centers for Birth Defect Research and Prevention, established by the CDC in 1996, even gathered data instrumental in blowing the lid off the link between antidepressants and birth defects. But thanks to radical austerity measures in Congress, two of those Centers, in Texas and Utah, have already been forced to shut down, according to March of Dimes.
How Birth Defect Research Makes Money
That’s a major loss, especially in an area of research that receives almost all of its funding from state and federal governments. Nearly 50% of states rely solely on government funding to operate their birth defect surveillance programs, the Association of State and Territorial Health Officials reports. But those grants don’t usually come for free; 37.5% of those states draw off state-run funds, but only in proportion to the services they provide for a fee, like newborn screenings.
Surprisingly, only 15 of the states can count on grants from the Centers for Disease Prevention & Control. That’s not so surprising when you consider how much the government devotes to birth defect research. In his 2016 budget request, President Obama asked for a paltry $132 million to fund the CDC’s Birth Defects, Developmental Disabilities, Disability & Health initiatives. That money spans multiple programs, from child health and development, which gets $64 million of the total, to funding hemophilia treatment centers, apportioned $5 million for 2016.
Government agencies don’t prioritize birth defect research, either. At the National Institutes of Health, the agency’s Heart, Lung & Blood Institute received almost $3 billion in funding in 2007, most of which went into grants for private researchers. Only 3% of that budget was allocated for research into pediatric conditions, like congenital heart defects. That means scientists who want to investigate the causes of heart defects are forced to turn to nonprofit organizations, including the Children’s Heart Foundation.
Nonprofits, though, which must rely on donations, can’t hope to match the kind of funding available through a government agency. Since its establishment in 1995, the Children’s Heart Foundation has only been able to fund approximately $420,000 worth of birth defect research every year.
States Cut Birth Defect Research Funding First
Facing budget crises, states turn quickly to their birth defect surveillance programs – and cut their funding. That’s what happened in 2003, according to Trust for America’s Health, when every state was forced to slash budgets across the board during a significant recession (one that has largely been overshadowed by the Great Recession beginning in 2007). Birth defect programs were cut, and while they’re usually bundled in with broader public health budgets, the birth defect programs were defunded to a greater extent than other programs.
This is a big mistake, says Shelley Hearne, executive director of Trust for America’s Health. States are missing the point of birth defect research, which isn’t just bettering the lives of children and families, but saving loads of money in the long-run. Birth defects cost $2.6 billion every year in hospital costs alone. That number doesn’t include lifetime care, which many children born with congenital abnormalities require for survival, or less tangible costs like the emotional and psychological toll birth defects can take on families.