[Congressional Record Volume 167, Number 188 (Tuesday, October 26, 2021)]
[Extensions of Remarks]
[Pages E1149-E1150]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                 NATIONAL SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                       HON. LUCILLE ROYBAL-ALLARD

                             of california

                    in the house of representatives

                       Tuesday, October 26, 2021

  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.

[[Page E1150]]

  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.

                          ____________________