The Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Department of Defense (DoD) and the Veteran’s Administration (VA) are other important agencies in our advocacy strategy. The CDC has funded registries for conditions like Spina Bifida and we have approached them for a similar effort for hydrocephalus. At this time, the CDC is not entertaining new registries.
The FDA is a critical agency because their policies control the introduction of new medical devices such as shunts. While their job is to protect the safety of the population, some of FDA policies have made the expense of introducing new shunt technology cost prohibitive. Striking the right balance between safety and innovation is critical for our population that is predominantly dependent on the shunt for survival.
The Department of Defense and the Veteran’s Administration are important agencies for us to focus on given the growing incidence of Post Traumatic Hydrocephalus (PTH) in the armed services population. Hydrocephalus has been found in a large percentage of the moderate to severe traumatic brain injuries (TBI). The high incidence of roadside bombs has increased the exposure of our armed forces to PTH. Currently there is no DoD or VA managed research programs about hydrocephalus. According to James Kelly, the Director of National Intrepid Center of Excellence that studies TBI in the armed services, they are currently tracking 220,000 TBI’s from the wars in Iraq and Afghanistan. He estimates that 20% of those are moderate to severe TBI’s.
The Hydrocephalus Association is working with members of the armed services who developed hydrocephalus and DoD to determine if there are funding opportunities for hydrocephalus.