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RECOGNIZING SPINA BIFIDA AWARENESS MONTH
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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.
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.
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SOURCE: Congressional Record Vol. 168, No. 168(1), Congressional Record Vol. 168, No. 168(2)
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