As former directors of the Centers for Disease Control and Prevention’s (CDC’s) National Center on Birth Defects and Developmental Disabilities (NCBDDD), we have spent our careers protecting children’s health and identifying and treating life-altering and life-threatening conditions to minimize their impact on children and their families. We, like most of our colleagues in public health, believe that our nation’s health is too important to be politicized, and that the public’s health should always be a bipartisan enterprise, objectively following where science leads for a safer and healthier nation. However, we can no longer remain silent while essential public health infrastructure is dismantled, and U.S. citizens are put at serious risk. We write to give a voice to some of our nation’s most vulnerable – infants, children and adults with disabilities, birth defects and blood disorders.
Established by Congress as part of the Children’s Health Act of 2000 with strong bipartisan support in 2000, the NCBDDD and its programs have each been established by acts of Congress. The programs range from prevention of birth defects like spina bifida and congenital heart defects, to preventing over 30,000 people with hemophilia from suffering bleeding crises while protecting the blood supply for all Americans, to addressing the special needs of people with disabilities, and the first to be seriously injured or even die during emergencies such as hurricanes, floods, fires and earthquakes. Ongoing staffing and funding cuts to the NCBDDD including entire core programs eliminated, put millions of children and adults at risk of injury, disability, and death. If these cuts, including cuts of physicians, scientists and staff with specialized expertise, continue, the U.S. will lose its ability to prevent birth defects, detect emerging threats, and ensure children and adults with disabilities can lead healthy, productive lives. While money can be restored, once these specialized experts are lost, restoring the expertise to the world’s premier public health institution will take decades, during which time Americans will suffer preventable deaths and disability.
Birth defects are the leading cause of infant death in the United States. More than 4,000 babies die each year from birth defects, or congenital malformations, which account for almost 20% of all infant deaths. Millions more children will live with developmental disabilities — including autism, congenital deafness, cerebral palsy, and intellectual disabilities — that can be identified earlier or better supported with the right programs in place.
NCBDDD saves lives and reduces costs. For example, research from the center showed that taking folic acid before and during pregnancy prevents spina bifida and other severe birth defects of the brain and spine. Following that research, the U.S. mandated folic acid fortification of cereal grains—an action that now prevents at least 1,000 serious birth defects each year in the United States.
NCBDDD’s programs go far beyond prevention. NCBDDD tracks the growing prevalence of autism, runs the national Early Hearing Detection and Intervention program that ensures all newborns with hearing loss get timely services, supports physical fitness and health programs for people with disabilities saving the health and service system millions each year, and coordinates access to life-saving treatments for people with hemophilia and sickle cell disease. These efforts mean that more children can enter school ready to learn, more families can access specialized care, and more individuals can live longer, healthier lives.
But those gains are now at risk.
Ongoing reductions-in-force have already begun to dismantle key programs. NCBDDD’s national early warning systems—built to detect birth defects caused by viruses like Zika or to identify emerging pathogens in the U.S. blood supply — are being gutted. With new threats like the Oropouche virus emerging in Latin America, we cannot afford to lose this vital surveillance capacity. Eliminating these programs means the U.S. could miss the next wave of preventable birth defects or developmental disabilities — until it’s too late.
Critical support for people with hemophilian also is under threat. Without NCBDDD’s coordination, patients may lose access to Factor VIII or other innovative life-saving treatments that prevent dangerous internal bleeding. For those living with sickle cell disease, the loss of data collection and expert care networks will result in more uncontrolled pain crises, preventable life-threatening infections, more emergency hospitalizations, and preventable deaths.
These cuts are not just short-sighted — they’re costly. In one large state, NCBDDDs sickle cell data system of connecting patients to care helped reduce emergency room visits by 11% and hospitalizations by 20%, and saved the state’s health care system nearly $100 million per year. Reversing activities related to folic acid fortification alone could cost the health care system up to $600 million annually. Without early intervention, children with hearing loss or developmental delays need more intensive special education services, costing schools and families even more, and costing society their lost productivity for decades.
NCBDDD has quietly safeguarded public health, helping families in every state. To lose it now would be to roll back decades of progress — and to risk the lives of future generations.
We urge policymakers, health leaders and the public to act now. The NCBDDD is not optional — it is essential. Protecting children from preventable birth defects and disabilities must remain a national priority.
Credit: contributed
Credit: contributed
Credit: Edwin Trevathan/contributed
Credit: Edwin Trevathan/contributed
Credit: Colleen Boyle/contributed
Credit: Colleen Boyle/contributed
By Former National Center on Birth Defects and Developmental Disabilities Center Directors José Cordero, MD, Coleen Boyle, Ph.D., Edwin Trevathan
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