National Spina Bifida Awareness Month

Floor Speech

Date: Oct. 26, 2021
Location: Washington, DC


Ms. ROYBAL-ALLARD. Madam Speaker, I rise today to recognize October as National Spina Bifida Awareness Month, and to pay tribute to the numerous individuals and their families across our country living with this condition.

Spina Bifida is the nation's most common, permanently disabling, birth defect compatible with life. According to the March of Dimes, about 1,645 babies are born with this condition in the United States each year, with its prevalence being highest in the Hispanic population. Known as a neural tube defect, Spina Bifida stems from a hole in the spinal cord that occurs when the spinal column fails to close properly during development in the womb. As a result, this condition impacts virtually every major organ system in the body. Children born with Spina Bifida typically undergo dozens of surgeries before they become adults. Adults living with Spina Bifida face a myriad of physical and mental health conditions, as well as other challenges, such as unemployment and limited access to quality primary and specialty care.

Over the last three decades we have made significant strides in preventing this birth defect and managing the care of those born with this condition. In response to research showing the incidence of Spina Bifida could be reduced by up to 70 percent with the addition of folic acid in a woman's diet, the United States Public Health Service recommended that all women of childbearing years should take 400 micrograms of folic acid daily to prevent having a pregnancy affected by a neural tube defect. Based on this recommendation, I introduced the Folic Acid Promotion and Birth Defects Prevention Act, which was passed into law as part of the Children's Health Act of 2000. This Act authorized a program within CDC to provide professional and public education for folic acid awareness.

In 1998, the U.S. Food and Drug Administration required that folic acid be added to enriched grain products such as bread, pasta, rice, and cereal to increase the likelihood that women would have sufficient folic acid in their diet before becoming pregnant. And in 2016, after years of advocacy with the FDA and the corn masa industry, folic acid fortification of corn masa flour was finally begun to target Hispanic communities that consume more corn masa products than grains. But there is still much work to be done to ensure adequate consumption of this critical nutrient that can neural tube defects.

There are currently an estimated 166,000 individuals in the United States living with Spina Bifida, approximately 65 of whom are adults. This disease is now witnessing its first generation of adults, an incredible milestone, considering that the original designation of Spina Bifida as a childhood condition meant most children born with this condition did not experience life beyond youth. Today, a generation of adults living with Spina Bifida, some of whom are 65 years and older, is an achievement worth celebrating. But unfortunately, there remain many unmet needs and additional health challenges affecting this medically fragile population.

As individuals develop, their clinical needs change, as should the type of care, and often the type of medical professional they see for that care. One challenge is that while we have a coordinated system of care designed to treat children with Spina Bifida in the United States, there is no equivalent for adults. Thus, the ``graduating child'' enters a very fractured medical system where individuals struggle to find physicians willing to provide treatment. Unfortunately, many of these physicians lack basic knowledge of this complex condition, and thousands of young to middle-aged adults are left with few options other than to seek care in the emergency room--or continue to see their pediatric care team at Spina Bifida Centers, which are designed for children.

In recent years, the Spina Bifida community has seen a growing incidence of sudden death in its over 25 population. There is speculation this sudden loss of life has something to do with the central nervous system, but the cause or causes remain unknown. As such, we must explore and understand this sudden death phenomenon so we can reverse this troubling trend. Moreover, we must support--and expand investment in--research to address other issues related to Spina Bifida and associated secondary and co-morbid conditions, such as hydrocephalus, latex allergy, neurogenic bladder and bowel problems, developmental delay, and impaired executive functioning.

The CDC's National Spina Bifida Program is the sole federal program tasked with improving the care and outcomes for people with Spina Bifida. In 2008, the Spina Bifida Program created a National Spina Bifida Patient Registry (NSBPR) to collect the scientific data needed to evaluate existing medical services for Spina Bifida patients, and to provide clinicians, researchers, patients, and families a ``window'' into what care models are effective and what treatments are not making a measurable difference. Building on this in 2014, the Spina Bifida Program funded the development of a Spina Bifida Collaborative Care Network (SBCCN) to identify and disseminate ``best practices'' for the care of people with Spina Bifida at all ages. These programs continue to improve quality-of-life and outcomes for people with this birth defect, but their full potential has been constrained due to flat federal funding over the last six years. Additional funding could expand the number of clinics participating in the registry and increase the amount of information reported, which will provide further insights into how to continue improving care and outcomes for people with Spina Bifida.

People with Spina Bifida deserve no less than the rest of us as we age. During a lifetime, someone with Spina Bifida will face at least a $1,000,000 in medical expenses, including multiple surgeries, and most can expect to spend much of their lives in a wheelchair or walking with braces. We must ensure that adults with Spina Bifida can receive evidence-based medical care tailored for their condition and receive that care in age-appropriate, non-emergency settings. I call upon my Congressional colleagues to prioritize increased funding for the CDC Spina Bifida Program to ensure that it will be poised to best guide the health care community in optimal treatment options for people living with Spina Bifida.