[Congressional Record Volume 166, Number 185 (Tuesday, October 27, 2020)]
[Extensions of Remarks]
[Pages E989-E990]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      NATIONAL SPINA BIFIDA MONTH

                                 ______
                                 

                       HON. LUCILLE ROYBAL-ALLARD

                             of california

                    in the house of representatives

                       Tuesday, October 27, 2020

  Ms. ROYBAL-ALLARD. Madam Speaker, I rise today to commemorate 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 the prevalence beinq highest in the Hispanic population. 
Known as a neural tube defect, Spina Bifida stems from a hole in the 
spinal cord that occurs because the spinal column fails to close 
properly during development in the womb; and, therefore, 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 complications, 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 some strides in preventing 
the birth defect and managing the care of those born with this 
condition. In response to research that showed 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 prevent neural tube defects.
  There are currently an estimated 166,000 individuals in the United 
States living with Spina Bifida, approximately 65 percent 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 that the vast majority of 
children born with this condition did not experience life beyond youth. 
And while a generation of adults is an achievement worth celebrating, 
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 of challenges faced by adults with this condition 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 into 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 hence thousands of young to 
middle-aged adults are left with few options other than to seek care in 
the emergency room, while some 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 that this sudden loss of life has something to do with the 
central nervous system, but the cause or causes remain unknown. There 
has been much energy and resources devoted to ensuring that people with 
Spina Bifida can experience full lives that are not cut short by this 
condition. 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, 
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 to disseminate ``best practices'' for 
the care of people with Spina Bifida at all ages. These programs are 
continuing 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 in turn, will 
provide further insights into how to continue to improve 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.

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