Blog PostsJan 25, 2021

Advocacy Priority: Sudden Unexpected Death

If you’ve been involved with any SBA Advocacy efforts over the past few years, you might have seen that sudden adult death is one of SBA’s advocacy priorities. The incidence of sudden death among adults with Spina Bifida is a difficult topic to discuss. However, since the recent increase in funding to the National Spina Bifida Program at the Centers for Disease Control and Prevention will hopefully include provisions to address sudden adult death, it’s important that we understand what it is and how it might affect you.

Sudden adult death, also recognized as sudden unexpected death, came from what may be an increase in the occurrence of sudden and unexpected deaths in adults with Spina Bifida. The sad reality is that due to a lack of research, we don’t have answers or an explanation for why or how this happens.

What we do know is that individuals with Spina Bifida are living longer due to advances in medical and surgical treatments and that 67 percent of the (estimated) Spina Bifida population now consists of adults. And in this growing population, we know there is a lack of knowledge about how to care for adults with Spina Bifida, and thus, a lack of quality health care to treat adults.

If you’re an adult with Spina Bifida, please don’t be alarmed. By no means does this mean that this will happen to you, or that you’re even at risk for it. We share this information with you so that you can be mindful, aware, and an advocate for yourself when it comes to treatment & care.

Currently, the majority of specialty care centers that treat and care for people with Spina Bifida are found in pediatric hospitals or clinics. Very few adult care centers exist. Our concern isn’t just the lack of treatment and care for people with Spina Bifida as they transition out of a pediatric clinic, but also that this lack of attention and treatment leaves gaps and raises questions about the quality of care, preventive care, and preventing outcomes such as sudden unexpected deaths.

So how do we address these issues? The answer is research. How do we conduct this research? For SBA, the answer is advocacy. The reason we advocate on Capitol Hill is because an increase in funding to the National Spina Bifida Program at the CDC can truly change the care, treatment, and future of adults living with Spina Bifida. That’s why we’ve asked the CDC to prioritize the issue of sudden unexpected death and to fund research that can help us better understand why this happens, and what we can do to prevent it.

How can you address sudden adult death? It is our hope that you advocate for yourself by telling your health care professionals that sudden adult death is real, that it is taking a toll on the adult Spina Bifida community, and that preventive care is vital.

If you are currently without a health care provider experienced in Spina Bifida care, our National Resource Center will be more than happy to try and help you find or connect with providers that we know treat people living with Spina Bifida.

Additionally, if you’d like to read more about sudden adult death from an adult living with Spina Bifida, we invited you to read An Uncomfortable Truth: Why Adults Should Ask to Have An Autopsy.

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