On behalf of the Spina Bifida Association—the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect—I want to thank you for the opportunity to present written testimony on the FY2025 Labor, Health and Human Services, Education and Related Agencies (L-HHS-ED) Appropriations bill. This testimony concerns funding of the National Spina Bifida Program at the U.S. Centers for Disease Control and Prevention (CDC) within the National Center on Birth Defects and Developmental Disabilities (NCBDDD). 

My name is Timothy Brei. I am a developmental pediatrician who has cared for children and adolescents with developmental disabilities including Spina Bifida, and I serve as the medical director for the Spina Bifida Association. I am also an adult with Spina Bifida. I am in my 60s and of the first generation with Spina Bifida to survive into adulthood. Despite having lived my whole life with bladder and bowel incontinence and partial paralysis, I realize that I am very fortunate. I was able to pursue a career in medicine that afforded me good health insurance, and by being in medicine I was also able to “grease the wheels” to access the care I needed. That is not an option for most people with Spina Bifida.

Spina Bifida is one of the most common permanently disabling birth defects compatible with life. In the United States, there are an estimated 166,000 individuals living with this condition. Spina Bifida is a birth defect for which there is no cure and results in a spinal cord injury before a baby is born. The CDC’s National Spina Bifida Program is the only place in the federal government exclusively dedicated to studying this chronic, complex condition affecting children and adults through its National Spina Bifida Patient Registry, the Spina Bifida Collaborate Care Network, and specific research projects. The FY2022 budget provided an increase of $500,000 to the National Spina Bifida Program, bringing the current funding level to $7.5 million. In FY2021, it was funded at $7 million—its first funding increase in five years. The cost of lifetime care for an individual with Spina Bifida is estimated at more than $1 million, yet current funding for this program averages to a paltry $45/individual with Spina Bifida. 

No longer a childhood disease, people with Spina Bifida like me are living well into their 60s and 70s, but the current system of care is still pediatric focused, despite the fact that more than two-thirds of all people in the United States living with Spina Bifida are adults. From my career in medicine, I know that medical school training still treats Spina Bifida as a disability of childhood without recognition that most people with Spina Bifida are adults. Each year the Spina Bifida Association fields hundreds of calls as adults struggle to find needed care, not just in primary care, but also necessary neurosurgical, urologic, and orthopedic subspecialty care. 

This year, we are requesting that the National Spina Bifida Program be funded at $11 million. This increase would provide ways to ensure appropriate, accessible care for adults with Spina Bifida by examining the current barriers to the completion of the transition process when leaving pediatric care and entering the adult care system, as well as providing resources to address those issues most pertinent to the adult population including mental health challenges, bladder incontinence, bowel incontinence, self-management, and independence. 

The current funding for the CDC’s Spina Bifida program only allows for 22 Spina Bifida clinics to participate in the National Spina Bifida Patient Registry, representing 11,000 individuals with Spina Bifida. Four of those clinics are actually self-funded. This number is absolutely inadequate to create a clear picture of the challenges people with Spina Bifida face, and it does not allow for the robust research necessary to improve their health outcomes. There are nearly 100 pediatric clinics nationwide and 30 adult clinics, and while that is not nearly enough to provide for the medical care of this population, we must do more to get the clinics that do exist into the registry and to provide additional funding for the clinics currently participating. I cannot stress this last point enough. Because funding for this program hasn’t significantly increased since its creation, the current amount of support each clinic in the registry receives is not enough, and we are at risk of losing their participation, which would result in incomplete and less robust data that are used to improve clinical decision making in order to improve care. 

The additional funding requested would amount to an additional $21 per individual with Spina Bifida—a small amount in the context of the federal budget but a significant increase to the program that would lead to greater research, improved clinical care, and ultimately, better health outcomes for some of the nation’s most vulnerable citizens. We know this because, even with the little data we have compiled, we have been able to improve clinical care for the Spina Bifida population. For example, using data from the Urology Management Protocol to Improve Care, we learned that most babies born with Spina Bifida have normal kidneys, and that it is through careful and timed surveillance that these young kidneys are protected for the future. It should matter to Congress that finding the best preventive care to protect the kidneys is important rather than allowing adults with Spina Bifida to progress to chronic renal failure and kidney dialysis.

While I recognize that the government faces budgetary pressures, I hope you will agree that this relatively small amount of additional funding is critically necessary to ensure the survival of this program. It has made a difference. People with Spina Bifida are now living up to 15 years longer than they were but still, on average, 30 years less than their non-disabled counterparts. And while that is absolutely unacceptable, what is even more unacceptable is losing those gains. That is what is at stake here. I know this both as someone who lives with Spina Bifida and has spent his career treating people with this condition. 

Again, on behalf of the Spina Bifida Association and all those living with Spina Bifida, along with their care partners and fellow clinicians, I thank you for considering this request.