[Congressional Record Volume 153, Number 33 (Tuesday, February 27, 2007)]
[House]
[Pages H1929-H1931]
From the Congressional Record Online through the 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 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.
[[Page H1930]]
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'' 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.
Modem 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.
[[Page H1931]]
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.
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