[Congressional Record Volume 169, Number 176 (Wednesday, October 25, 2023)]
[Extensions of Remarks]
[Pages E1012-E1013]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                RECOGNIZING SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                      Wednesday, October 25, 2023

  Mr. SMITH of New Jersey. Mr. Speaker, each October we recognize 
National Spina Bifida Month and pay tribute to the nearly 166,000 
Americans living with Spina Bifida--the most common permanently 
disabling birth defect compatible with life--and to draw attention to 
the critical challenges we must address to ensure each and every 
American can achieve their full potential and attain the quality of 
life they deserve.
  The federal government has an obligation to advance research into 
devastating diseases and disabilities to help find cures and therapies 
and to identify preventative strategies. Equally important is federal 
support for programs and initiatives that help patients and their 
families as they struggle to live with these conditions, such as Spina 
Bifida.
  Literally translated as ``split spine,'' Spina Bifida is a condition 
that occurs when a baby's neural tube fails to develop or close 
properly. Typically occurring within the first 28 days of pregnancy 
while the neural tube is forming, Spina Bifida often develops before a 
woman even knows she is pregnant.
  Sponsored by the Spina Bifida Association (SBA), National Spina 
Bifida Awareness Month is a time to highlight the needs of the 
community and recognize the importance of the work done year-round to 
advance research, programs, and policies aimed at meeting those needs.
  As co-chair of the Congressional Spina Bifida Caucus, I've had the 
honor to work alongside SBA to advance Spina Bifida awareness, 
research, and public health efforts in Congress. Founded in 1973, SBA 
is the Nation's only organization solely dedicated to advocating for 
and assisting those living with and affected by this debilitating birth 
defect.
  Through its nearly 60 chapters in more than 125 communities, the SBA 
brings expectant parents together with those who have a child with 
Spina Bifida. This interaction helps to answer questions and concerns, 
but most importantly it lends much needed support, solidarity, 
inspiration, and hope.
  Mr. Speaker, Spina Bifida is a birth defect that can happen to 
anyone. Every day, an average of eight babies are affected by Spina 
Bifida and approximately 3,000 pregnancies are affected by this birth 
defect each year.
  We do not know the exact cause of this condition, but research has 
found that if a woman takes 400 mcg of folic acid every day before she 
becomes pregnant, she reduces her risk of having a baby with Spina 
Bifida or another neural tube defect by as much as 70 percent.
  No two cases of Spina Bifida are ever the same and so this birth 
defect is commonly referred to as the ``snowflake condition.'' Children 
born with Spina Bifida typically undergo dozens of surgeries before 
they reach the age of 18. And during their lifetime, someone with Spina 
Bifida will face at least $1 million in medical expenses, including 
multiple surgeries, and most can expect to spend much of their lives in 
a wheelchair or walking with braces.
  Despite these challenges--and thanks to advances in research and 
medicine, along with policies supportive of children with 
disabilities--nearly two-thirds of Americans currently living with 
Spina Bifida have made it to adulthood. And while these strides are 
certainly worth celebrating, people with Spina Bifida--particularly 
adults--continue to face a crisis of care that could be largely 
prevented with the right resources and policies.
  For instance, while we have a coordinated system of care designed to 
treat children with Spina Bifida in the U.S., there is no equivalent 
for adults. The result is that adults face a ``care cliff'' and enter a 
very fractured medical system where they are unable to find physicians 
willing or even knowledgeable enough to provide treatment, as Spina 
Bifida is still largely taught in medical schools as a pediatric 
condition and education has failed to keep pace with the rapid rise in 
the adult Spina Bifida population.
  Thousands of adults are left with few options other than to seek care 
in the emergency room or continue to see their pediatric care team 
until insurance will no longer cover their care because of their age. 
And to make matters worse, many of these adults rely on Medicaid as 
their insurance provider, so even if they have the means to travel to 
an adult specialist, if they are located in another state--as is often 
the case--their coverage is denied. Across the country, there are more 
than 100 pediatric clinics devoted to caring for children with Spina 
Bifida. There are only 20 whose focus is on adults.
  At the federal level, we can and should make dramatic improvements in 
the ability of adults with Spina Bifida to access quality care by 
increasing the funding of the CDC's National Spina Bifida Program--the 
only federal program tasked with improving the care and outcomes for 
people living with Spina Bifida.
  In 2008, the Federal Spina Bifida Program created a National Spina 
Bifida Patient Registry 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 to identify 
and to disseminate best practices for the care of people with Spina 
Bifida at all ages.
  However, with only $7.5 million in annual funding--and this amount 
has been stagnant--there are only 11,000 patients in the national 
registry, limiting the ability of medical professionals to glean 
knowledge that would advance research in areas critical to improving 
quality of life. Even modest increases to this funding would make an 
enormous difference.
  Additionally, we should urge NIH to work collaboratively across their 
many divisions to better understand Spina Bifida. As Spina Bifida can 
affect every organ and every system in the human body, a collaborative 
effort undertaken by NIH could result in research that would lead to 
better care for both this generation and future generations of Spina 
Bifida patients. Moreover, the new designation of those with 
disabilities as a health disparity creates a new opportunity to harness 
federal resources for the Spina Bifida community by ensuring their 
representation in NIH research and thereby recognizing those with this 
complex condition in a new and critical light.
  We are so fortunate today that our country is benefiting from the 
talent and contributions of the first generation of adults living with 
Spina Bifida. Today, I honor and celebrate all of them, along with 
their care partners, and also remember those we have lost to this 
condition. And I urge my colleagues to not only increase funding for 
the National Spina Bifida Program, but to work together so that these 
Americans receive the care and treatment all of us want for our 
families and loved ones.

[[Page E1013]]

  Mr. Speaker, with added federal support, more people living with 
Spina Bifida could receive assistance they need along their life's 
journey. I invite my colleagues to join me in this mission and join me 
in the Spina Bifida Caucus to broaden our efforts and advance the goal 
of a better future for people living with Spina Bifida.

                          ____________________