[Congressional Record Volume 161, Number 79 (Thursday, May 21, 2015)]
[Extensions of Remarks]
[Page E782]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




             ADVANCING RESEARCH FOR HYDROCEPHALUS PATIENTS

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                         Thursday, May 21, 2015

  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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