[Congressional Record Volume 168, Number 168 (Tuesday, October 25, 2022)]
[Extensions of Remarks]
[Pages E1077-E1078]
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

                       Tuesday, October 25, 2022

  Mr. SMITH of New Jersey. Madam 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.
  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.

[[Page E1078]]

  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.
  Madam 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.
  There are number of concrete steps we could take that would make 
dramatic improvements in the ability of adults with Spina Bifida to 
access quality care. One is to increase funding of the CDC's National 
Spina Bifida Program--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 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, 
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. Spina Bifida research needs dedicated funding to ensure a 
better future for Americans with Spina Bifida.
  This past summer, Christopher Rosati--a young man living with Spina 
Bifida--worked as an intern in my Washington, D.C. office.
  I originally met Chris during an advocacy day nearly 18 years ago 
when he was just 4 years old. After those early days, Chris and I met 
again when he worked as an intern in my NJ office. Based on his good 
works, we offered him an internship in my office on Capitol Hill. At 
each location, during each internship, Chris proved to be a smart, 
hardworking, reliable member of the team.
  Undeterred by physical challenges inherent in a commute and in some 
workspaces, Chris has set his sights on public policy and making a 
difference. This fall he returned to school as a senior at The College 
of New Jersey. My entire staff and I have been truly inspired by Chris' 
determination, dedication, good nature, and success. I am grateful for 
his contributions in my office, and we all look forward with enthusiasm 
and anticipation to the positive impact he will bring and the advances 
he will help achieve--for himself and the populations he will act on 
behalf of--in any career he pursues.
  Madam 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.

                          ____________________