Guest Blog: A care crisis we cannot ignore

By Sara Struwe, President & CEO, Spina Bifida Association 

 Most Americans take for granted that—while it may sometimes be too costly—we can find basic medical care if we need it. We can call our family doctor, head to an urgent care, or if all else fails, there’s always the emergency room.  

 But for adults living with Spina Bifida—the most common permanently disabling birth defect compatible with life—finding care providers who understand their unique challenges can be nearly impossible.  

 Spina Bifida—which literally translates to “split spline”—occurs when the neural tube fails to develop or close properly. During their lifetime, someone with Spina Bifida will face at least a $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. 

 Nearly two-thirds of the 166,000 people in the U.S. with Spina Bifida have lived to adulthood—a remarkable achievement that would have previously been unimageable. And while that’s certainly an achievement worth celebrating, the reality is that medical care has not kept pace with the rapid rise in this adult population.  

 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 still largely taught in medical schools as a pediatric condition. 

 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.  

 The result? Adults with Spina Bifida are often forced to continue seeing their pediatric care team until they age out. To make matters worse, many of these adults are covered by Medicaid, so even if they have the means to travel to an adult specialist, if they are in another state—as is often the case—their coverage is denied. 

The situation for adults with Spina Bifida is clearly untenable, but it doesn’t have to be this way. Closing the care gap, however, will require a coordinated effort. 

Congress must act to make it easier for people on Medicaid to get the care they need, even if they have to cross state lines to do so, and ensure that Medicaid is covering the supplies, medications, and treatments people with Spina Bifida need.

They must also 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.

Additionally, Congress should better fund the CDC’s National Spina Bifida Program, which manages the Spina Bifida Patient Registry, to enable better data collection. With a current annual budget of $7.5 million, the registry only holds data on 11,000 individuals, limiting our ability to understand the day-to-day challenges facing this population and to improve clinical care.

Medical schools also need to do their part and update their curricula to reflect the reality that Spina Bifida is more than simply a pediatric condition and do more to train professionals to care for this population across the lifespan.

Finally, private insurers can do a better job of providing appropriate coverage. As one example, the Spina Bifida Association and Duke Health released a study on insurance reimbursement for catheter supplies and found that the average annual out-of-pocket cost for catheters and catheter supplies is $789, leading some people to re-use their supplies—a dangerous and potentially life-threatening practice. 

October is Spina Bifida Awareness Month. It’s an opportunity for reflection, a moment to celebrate all that has been accomplished, but also a collective call to action. 

This year, nearly 1,500 babies will be born with Spina Bifida in the U.S., and thousands more living with this condition will begin their transition to adulthood. We can—and we must—do more to make sure that every one of these Americans has a better, brighter future and every chance to reach their full human potential.  

Sara Struwe is President and CEO of the Spina Bifida Association, a national 501(c)(3) nonprofit organization whose mission is to build a better and brighter future for all those impacted by Spina Bifida. For more information, visit

The Spina Bifida Association is a member of the National Health Council. For more information on membership, please email [email protected]