Advancing Research for Hydrocephalus Patients

Floor Speech

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Mr. SMITH of New Jersey. Mr. Speaker, I rise today to call attention to legislation I introduced last week, the Advancing Research for Hydrocephalus Act, and urge my colleagues to cosponsor this important bill. My new legislation--which is supported by the national Hydrocephalus Association--will facilitate better research into this devastating condition by requiring the collection of demographic information on the hydrocephalus community.

Hydrocephalus, which is defined as an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain, can cause brain damage, vision issues, and extreme pain for those affected.

One of those affected, Adrienne D'Oria, a 22 year old from my Congressional District, has suffered from hydrocephalus since she was 10 months old. In addition to the excruciating pain, complications from shunt malfunctions, dozens of brain surgeries and hundreds of hospital visits have essentially eliminated any chance of a normal childhood. Hydrocephalus continues to limit her options for the future:

All of my friends, everyone I went to school with is graduating and starting the next stage in their life. I can't do that,'' she said recently. ``I had to withdraw from so many classes because of hospital admissions and all the surgeries. Even though I've been out of high school for four years I only have the credits of a freshman. My friends are graduating and I'm stuck in limbo. I can't control it.

Unfortunately for Adrienne and thousands like her, the most common treatment for hydrocephalus remains a surgically-inserted shunt. Shunts drain the fluid from the brain through the neck and into other parts of the body. They frequently become blocked, malfunction, or cause infection. In almost half of all cases in children, the shunt fails within the first two years. When they do, patients must immediately locate a medical facility and a neurosurgeon who can correct the problem. This precarious situation is a constant source of fear for those who suffer from hydrocephalus and their families. In fact, hydrocephalus is the most common reason for brain surgery in children.

The scientific and medical communities not only have very few resources that can help them in understanding this condition, they are not even aware of the true impact of this disorder. Without better data and research, they cannot develop more effective treatments.

Mr. Speaker, there are some estimates that this condition affects roughly one million Americans. Yet given that hydrocephalus can occur either congenitally or be acquired, oftentimes through infection or traumatic brain injury, reporting of hydrocephalus has been inconsistent. Currently no mechanism exists to identify and track persons with hydrocephalus who develop the condition after birth. As a result, we do not have a good grasp on the demographics of hydrocephalus patients.

My bill provides a remedy. The Advancing Research for Hydrocephalus Act will establish a National Hydrocephalus Surveillance System (NHSS) to collect information on the incidence and prevalence of hydrocephalus among a range of demographics, including changes in epidemiology over time. This surveillance system would provide a wealth of data for researchers. Better surveillance will facilitate better research and lead to better outcomes, treatment and care for the infants, children, and adults experiencing the agonizing pain of hydrocephalus.

So I urge my colleagues to support my legislation to help provide assistance and raise the quality of life for individuals, like Adrienne, who are suffering from this condition.

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