[Congressional Record Volume 168, Number 168 (Tuesday, October 25, 2022)]
[Extensions of Remarks]
[Pages E1076-E1077]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     CELEBRATING SPINA BIFIDA MONTH

                                 ______
                                 

                       HON. LUCILLE ROYBAL-ALLARD

                             of california

                    in the house of representatives

                       Tuesday, October 25, 2022

  Ms. ROYBAL-ALLARD. Madam Speaker, I rise today to commemorate October 
as National Spina Bifida Awareness Month, to honor the 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 
in the U.S. Literally translated as ``split spine,'' it 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.
  Before 1960, the survival rate for all forms of Spina Bifida was 10 
percent to 12 percent. But over the last 6 decades, advances in 
research and medicine, along with policies supportive of children with 
disabilities, have ensured that 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.
  Spina Bifida is commonly referred to as the ``snowflake condition'' 
of birth defects because no two cases are the same. Children born with 
this condition typically undergo dozens of surgeries before they reach 
the age of 18. And

[[Page E1077]]

during their lifetime, someone with Spina Bifida will face at least a 
$1 million in medical expenses, including surgeries continuing 
throughout adulthood, and most can expect to spend much of their lives 
in a wheelchair or walking with braces.
  One significant challenge facing this population is that, 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. 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. 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. 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.
  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 who may be 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 less than 30 whose focus is on adults.
  There are a number of concrete steps at the federal level 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.
  Another important step would be to reform Medicaid policies to 
require coverage or treatment received across state lines for rare 
disorders, as there simply aren't enough specialists in each state to 
provide the care that people with Spina Bifida desperately need and 
deserve.
  And finally, we must continue to allow patients to receive insurance 
coverage for telehealth services once the COVID-19 emergency 
declaration expires. Telehealth is a critical tool in improving health 
outcomes for everyone, particularly those with unique conditions where 
care isn't easily accessible geographically.
  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 to reform insurance 
policies so that these Americans receive the care and treatment all of 
us want for our families and loved ones.

                          ____________________