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




     COMMEMORATING OCTOBER AS NATIONAL SPINA BIFIDA AWARENESS MONTH

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                          HON. JERROLD NADLER

                              of new york

                    in the house of representatives

                      Wednesday, October 25, 2023

  Mr. NADLER. Mr. Speaker, I rise today to commemorate October as 
National Spina Bifida Awareness Month, to recognize the approximately 
166,000 Americans living with this condition, and to draw attention to 
the critical challenges we must address to ensure that each and every 
one of these individuals can achieve their full human potential and 
have the quality of life they deserve.
  According to the Spina Bifida Association of America, Spina Bifida is 
the most common permanently disabling birth defect compatible with 
life. Literally translated as ``split spine,'' Spina Bifida 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.
  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 a $1 million in medical expenses, 
including multiple surgeries.
  Despite these challenges--and thanks to advances in research and 
medicine, along with policies supportive of children with this 
condition--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.
  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 stil 
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 could 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 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.
  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. 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.

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