[Congressional Record (Bound Edition), Volume 153 (2007), Part 4]
[House]
[Pages 4726-4728]
[From the U.S. Government Publishing Office, www.gpo.gov]




  EXPRESSING SENSE OF CONGRESS REGARDING NEED FOR ADDITIONAL RESEARCH 
                           INTO HYDROCEPHALUS

  Mr. PALLONE. Mr. Speaker, I move to suspend the rules and agree to 
the concurrent resolution (H. Con. Res. 74) expressing the sense of the 
Congress regarding the need for additional research into the chronic 
neurological condition hydrocephalus, and for other purposes.
  The Clerk read as follows:

                            H. Con. Res. 74

       Whereas hydrocephalus is a serious neurological condition, 
     characterized by the abnormal buildup of cerebrospinal fluids 
     in the ventricles of the brain;
       Whereas there is no known cure for hydrocephalus;
       Whereas hydrocephalus affects an estimated one million 
     Americans;
       Whereas 1 or 2 in every 1000 babies are born with 
     hydrocephalus;
       Whereas over 375,000 older Americans have hydrocephalus, 
     which often goes undetected or is misdiagnosed as dementia, 
     Alzheimer's disease, or Parkinson's disease;
       Whereas with appropriate diagnosis and treatment, people 
     with hydrocephalus are able to live full and productive 
     lives;
       Whereas the standard treatment for hydrocephalus was 
     developed in 1952, and carries multiple risks including shunt 
     failure, infection, and overdrainage;
       Whereas there are fewer than 10 centers in the United 
     States specializing in the treatment of adults with normal 
     pressure hydrocephalus;
       Whereas each year, the people of the United States spend in 
     excess of $1 billion to treat hydrocephalus;
       Whereas a September 2005 conference sponsored by 7 
     institutes of the National Institutes of Health--
     ``Hydrocephalus: Myths, New Facts, Clear Directions''--
     resulted in efforts to initiate new, collaborative research 
     and treatment efforts; and
       Whereas the Hydrocephalus Association is one of the 
     Nation's oldest and largest patient and research advocacy and 
     support networks for individuals suffering from 
     hydrocephalus: Now, therefore, be it
       Resolved by the House of Representatives (the Senate 
     concurring),  That--
       (1) the Congress commends the Director of the National 
     Institutes of Health for working with leading scientists and 
     researchers to organize the first-ever National Institutes of 
     Health conference on hydrocephalus; and
       (2) it is the sense of the Congress that--
       (A) the Director of the National Institutes of Health 
     should continue the current collaboration with respect to 
     hydrocephalus among the National Eye Institute; the National 
     Human Genome Research Institute; the National Institute of 
     Biomedical Imaging and Bioengineering; the National Institute 
     of Child Health and Human Development; the National Institute 
     of Neurological Disorders and Stroke; the National Institute 
     on Aging; and the Office of Rare Diseases;
       (B) further research into the epidemiology, 
     pathophysiology, disease burden, and improved treatment of 
     hydrocephalus should be conducted or supported; and
       (C) public awareness and professional education regarding 
     hydrocephalus should increase through partnerships between 
     the Federal Government and patient advocacy organizations, 
     such as the Hydrocephalus Association.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New 
Jersey (Mr. Pallone) and the gentleman from Oklahoma (Mr. Sullivan) 
each will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days to revise and extend their remarks and 
include extraneous material on the bill that we are considering.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
  I rise in support of H. Con. Res. 74, expressing the sense of the 
Congress regarding the need for additional research into the chronic 
neurological condition hydrocephalus.
  Hydrocephalus simply means water on the brain. The term 
``hydrocephalus'' defines a condition characterized by an excessive 
accumulation of fluid in the brain. This buildup of fluid inside the 
skull causes the brain to swell, infections of the nervous system, 
lesions or tumors of the brain or spinal cord, and decreased mental 
function among other symptoms.
  The causes of hydrocephalus are not all well understood. It may 
result from genetic inheritance or developmental disorders. Other 
possible causes include complications of premature birth, diseases or 
infections caught before birth, and injury before, during or after 
childbirth.
  Hydrocephalus is believed to affect approximately one in every 500 
children. At present, most of these cases

[[Page 4727]]

are diagnosed prenatally, at the time of delivery, or in early 
childhood. Advances in diagnostic imaging technology allow more 
accurate diagnoses in individuals with atypical presentations, 
including adults with conditions such as normal pressure hydrocephalus.
  The National Institute of Neurological Disorders and Stroke, a part 
of the National Institutes of Health, is the leading support of 
research on hydrocephalus within the Federal Government. NINDS works 
collaboratively with other institutes at NIH to further research on the 
influence of hydrocephalus on development and on the more general issue 
of the effect of early brain injury. The knowledge gained from this 
research will foster hope for new methods to treat and prevent 
developmental brain disorders such as hydrocephalus.
  I would like to thank Congressman Mike Thompson of California for his 
work to bring this resolution before us today, and I would urge my 
colleagues to support H. Con. Res. 74.
  Mr. Speaker, at this time I reserve the balance of my time.
  Mr. SULLIVAN. Mr. Speaker, I yield myself as much time as I may 
consume.
  I stand here today in support of this resolution, House Concurrent 
Resolution 74, addressing the need for additional research into the 
chronic neurological condition hydrocephalus.
  This disease, for which there is no cure, affects an estimated 1 
million Americans. Often the symptoms of hydrocephalus are confused 
with those of dementia, Alzheimer's disease or Parkinson's disease. 
When the disease is properly identified, people with hydrocephalus are 
able to live full and productive lives.
  The National Institutes of Health has responded to the needs of the 
hydrocephalus community by working with scientists and researchers to 
organize a conference in September of 2005 called ``Hydrocephalus: 
Myths, New Facts, Clear Directions.''
  Demonstrating the need for collaborative research at the National 
Institutes of Health, seven institutes were able to work together and 
initiate new research and treatment efforts for hydrocephalus.
  I thank Representative Mike Thompson for his work in bringing 
awareness to this issue.
  Mr. Speaker, I yield back the balance of my time.
  Mr. PALLONE. Mr. Speaker, I am pleased to yield 5 minutes to the 
gentleman from California (Mr. Thompson), the sponsor of the House 
concurrent resolution.
  Mr. THOMPSON of California. Mr. Speaker, I thank the gentleman for 
yielding.
  I am here today to ask all of my colleagues to support this 
resolution. Hydrocephalus is an abnormal buildup of fluid in the brain, 
and it affects nearly 1 million Americans. Without treatment, 
hydrocephalus is fatal, but when treated, most people with this 
condition can lead full and productive lives.
  I became aware of this condition through a constituent and a friend 
of mine, Cynthia Solomon, who has a family member who suffers from this 
condition. Cynthia struggled to find information about hydrocephalus 
and wanted to connect with other affected families. So she cofounded 
the first patient advocacy organization for this condition, the 
Hydrocephalus Association.
  As anyone who has been affected by this condition can tell you, the 
symptoms are many and they vary from person to person. Excess fluid in 
the brain can cause head enlargement, blurred vision, seizures, 
learning disabilities and impaired physical development. In older 
adults, symptoms can mimic dementia, Alzheimer's disease and 
Parkinson's disease, often leading to a misdiagnosis and a delay in 
receiving critical and proper treatment.
  Doctors do not yet understand the specific causes of hydrocephalus. 
However, the current treatment was developed back in 1952 and involves 
surgically inserting a shunt into the brain. This carries serious risk 
of shunt failure, infection and obstructions. Overdrainage is also a 
threat. This can trigger a vertical collapse, causing blood vessels to 
tear and possibly resulting in a subdural hematoma.
  Improvement in this treatment is long overdue, and with additional 
research, we can make it happen.
  The National Institutes of Health recognizes this need and recently 
organized their first ever conference on hydrocephalus. This has 
resulted in efforts to initiate new collaborative research projects and 
an expansion of their focus on the development of new treatments.
  This resolution commends the NIH for their action and encourages them 
to continue their collaborative efforts. It also calls for additional 
research into this serious condition.
  However, we cannot depend solely on Federal efforts to expand 
awareness about hydrocephalus. I commend the Hydrocephalus Association 
and other groups for their commitment to patient advocacy and public 
education. Partnerships between these groups, health care providers and 
the government will bring us closer to our common goal: improved 
treatment of this condition.
  I would like to say a special thanks to Dory Kranz, who is the 
current director of the Hydrocephalus Association, for her help in 
putting this resolution together and her ongoing work in this regard.
  I ask my colleagues for their support of this resolution so we can 
further research into this very serious and important condition and we 
can bring about improved treatment to those individuals who are 
affected by this very, very serious and debilitating condition.
  Ms. PELOSI. Mr. Speaker, I rise in strong support of H. Con. Res. 74 
which has been introduced by my colleague from California, Congressman 
Mike Thompson, and co-sponsored by Democratic and Republican Members 
alike.
  H. Con. Res. 74 encourages additional support for research into the 
prevention and treatment of the neurological condition hydrocephalus. 
It is a chronic medical condition that, like other conditions affecting 
a relatively small number of people, receives inadequate attention and 
resources, which delays research that could achieve great 
breakthroughs. Passage of H. Con. Res. 74 will demonstrate the support 
of the Congress for aggressive research to find improved methods for 
detecting and treating hydrocephalus not only among children, but 
within the increasingly large number to adults who are affected by late 
onset of the condition.
  I am especially proud that the Hydrocephalus Association is 
headquartered in my congressional district in San Francisco, and that 
the couple whose pioneering efforts have encouraged and supported so 
many people with hydrocephalus and their families are San Franciscans--
Emily and Russell Fudge, as is the Association's Executive Director, 
Dory Kranz.
  Under their leadership, together with the board composed of leading 
physicians and researchers, parents and people with hydrocephalus, the 
Hydrocephalus Association has raised public awareness of this condition 
and the enormous impact it has on over one million Americans. Because 
of the medical advances and the advocacy efforts promoted by the 
Association, most of these children and adults are able to lead full 
and productive lives and make enormous contributions to our society.
  These successes have inadvertently complicated the efforts to advance 
research, diagnosis and treatment. The typical surgical treatment--the 
insertion of a shunt to carry away excessive cerebral fluid from the 
brain--was developed over 50 years ago. Because shunting has alleviated 
many of the more grave aspects of pre-shunt hydrocephalus, many believe 
it represents a cure. But it does not. Shunt surgery and the frequent 
repairs, which are well known to those with hydrocephalus and their 
families, are not only serious operations, but cost a billion dollars a 
year, much of which might well be averted with development of advanced 
treatment strategies.
  Promoting additional research through increased federal support is 
the goal of this resolution. Those advances will benefit not only those 
with hydrocephalus, but will help to reduce excessive costs in our 
health care system, and allow hundreds of thousands of people with 
hydrocephalus to live even fuller lives freed from the anxieties and 
costs associated with shunt failure and related complications.
  Seven of the institutes of the National Institutes of Health--
including the Office of Rare Diseases--sponsored a major national 
conference in September 2005 on ``Hydrocephalus: Myths, New Facts, 
Clear Directions''

[[Page 4728]]

which has encouraged aggressive action in the areas of research and 
treatment. Now it is time for the Congress to join the campaign to 
expand our understanding of the causes and modernize the treatment of 
hydrocephalus. I call upon my colleagues to support H. Con. Res. 74 to 
encourage our nation's leading medical institutions and researchers to 
expand their focus on achieving breakthrough research in the diagnosis 
and treatment of hydrocephalus.
  Mr. WAXMAN. Mr. Speaker, I rise in strong support of H. Con. Res. 74. 
This resolution will encourage research into Hydrocephalus, a chronic 
and often devastating neurological condition.
  Hydrocephalus affects an estimated one million Americans--which 
classifies it as a rare disease. And, unfortunately, like so many other 
rare diseases, insufficient resources have been directed toward it. 
Individuals with this disease are forced to undergo ``shunting,'' a 
highly invasive surgical procedure that carries with it serious safety 
risks. This procedure also takes a heavy toll on our entire health-care 
system, costing an average of $35,000 per procedure.
  We can avoid paying this price. With more research and focus on this 
disease, better treatment--and perhaps even a cure--is within our 
reach. Patients can be spared the trauma of brain surgery and American 
citizens can avoid paying more than a billion dollars each year for 
this treatment.
  The NIH has already taken some positive steps toward this goal. By 
initiating a collaborative effort among 7 NIH institutes and sponsoring 
a major national conference, the NIH has begun the work that must be 
done. Now we need to send a strong statement that we want this work to 
continue.
  Cures for rare diseases like Hydrocephalus will never be found unless 
we increase our effort and follow the scientific promise. We can start 
with this vote today.
  Mr. GEORGE MILLER of California. Mr. Speaker, I rise today to express 
my support for H. Con. Res. 74 sponsored by Congressman Mike Thompson. 
Passage of this bill will express federal support for Hydrocephalus 
research.
  Hydrocephalus, a chronic neurological condition that causes 
cerebrospinal fluid to build up in the brain cavity instead of being 
reabsorbed into the body, is a disease that affects over one million 
Americans. This disease can cause head enlargement and blurred vision, 
learning disabilities and impaired physical development and is fatal if 
untreated.
  Like many other diseases that affect a relatively small portion of 
our population, Hydrocephalus research lacks proper funding. It is 
deplorable that the current standard treatment, which requires the 
insertion of a shunt into the brain to drain out the fluid, was 
designed in 1952. Shunts are extremely prone to infections and 
frequently require repair through major surgery.
  Modern medicine can do better. I am certain that with federal support 
for additional research we can develop a better treatment, if not a 
cure, for those suffering from Hydrocephalus and help them live 
healthier, fuller lives.
  I applaud my colleague, Mr. Thompson, for his efforts in this area 
and I encourage my colleagues to support this resolution.
  Mr. PALLONE. Mr. Speaker, I have no additional requests for time, and 
I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from New Jersey (Mr. Pallone) that the House suspend the 
rules and agree to the concurrent resolution, H. Con. Res. 74.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the concurrent resolution was agreed to.
  A motion to reconsider was laid on the table.

                          ____________________