[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]
HYDROCEPHALUS TREATMENT IN UGANDA: LEADING THE WAY TO HELP CHILDREN
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HEARING
BEFORE THE
SUBCOMMITTEE ON AFRICA, GLOBAL HEALTH,
AND HUMAN RIGHTS
OF THE
COMMITTEE ON FOREIGN AFFAIRS
HOUSE OF REPRESENTATIVES
ONE HUNDRED TWELFTH CONGRESS
FIRST SESSION
__________
AUGUST 2, 2011
__________
Serial No. 112-102
__________
Printed for the use of the Committee on Foreign Affairs
Available via the World Wide Web: http://www.foreignaffairs.house.gov/
______
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COMMITTEE ON FOREIGN AFFAIRS
ILEANA ROS-LEHTINEN, Florida, Chairman
CHRISTOPHER H. SMITH, New Jersey HOWARD L. BERMAN, California
DAN BURTON, Indiana GARY L. ACKERMAN, New York
ELTON GALLEGLY, California ENI F.H. FALEOMAVAEGA, American
DANA ROHRABACHER, California Samoa
DONALD A. MANZULLO, Illinois DONALD M. PAYNE, New Jersey
EDWARD R. ROYCE, California BRAD SHERMAN, California
STEVE CHABOT, Ohio ELIOT L. ENGEL, New York
RON PAUL, Texas GREGORY W. MEEKS, New York
MIKE PENCE, Indiana RUSS CARNAHAN, Missouri
JOE WILSON, South Carolina ALBIO SIRES, New Jersey
CONNIE MACK, Florida GERALD E. CONNOLLY, Virginia
JEFF FORTENBERRY, Nebraska THEODORE E. DEUTCH, Florida
MICHAEL T. McCAUL, Texas DENNIS CARDOZA, California
TED POE, Texas BEN CHANDLER, Kentucky
GUS M. BILIRAKIS, Florida BRIAN HIGGINS, New York
JEAN SCHMIDT, Ohio ALLYSON SCHWARTZ, Pennsylvania
BILL JOHNSON, Ohio CHRISTOPHER S. MURPHY, Connecticut
DAVID RIVERA, Florida FREDERICA WILSON, Florida
MIKE KELLY, Pennsylvania KAREN BASS, California
TIM GRIFFIN, Arkansas WILLIAM KEATING, Massachusetts
TOM MARINO, Pennsylvania DAVID CICILLINE, Rhode Island
JEFF DUNCAN, South Carolina
ANN MARIE BUERKLE, New York
RENEE ELLMERS, North Carolina
VACANT
Yleem D.S. Poblete, Staff Director
Richard J. Kessler, Democratic Staff Director
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Subcommittee on Africa, Global Health, and Human Rights
CHRISTOPHER H. SMITH, New Jersey, Chairman
JEFF FORTENBERRY, Nebraska DONALD M. PAYNE, New Jersey
TIM GRIFFIN, Arkansas KAREN BASS, California
TOM MARINO, Pennsylvania RUSS CARNAHAN, Missouri
ANN MARIE BUERKLE, New York
C O N T E N T S
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Page
WITNESSES
Benjamin Warf, M.D., Director, Neonatal and Congenital Anomalies
Neurosurgery, Department of Neurosurgery, Children's Hospital
Boston......................................................... 6
Steven J. Schiff, M.D., Director, Center for Neural Engineering,
Pennsylvania State University.................................. 11
Mr. Jim Cohick, senior vice president of specialty programs, CURE
International.................................................. 17
LETTERS, STATEMENTS, ETC., SUBMITTED FOR THE HEARING
Benjamin Warf, M.D.: Prepared statement.......................... 8
Steven J. Schiff, M.D.: Prepared statement....................... 13
Mr. Jim Cohick: Prepared statement............................... 19
APPENDIX
Hearing notice................................................... 36
Hearing minutes.................................................. 37
The Honorable Russ Carnahan, a Representative in Congress from
the State of Missouri: Prepared statement...................... 38
Written response received from Mr. Jim Cohick to question asked
by the Honorable Ann Marie Buerkle, a Representative in
Congress from the State of New York............................ 39
Mr. Jim Cohick: Material submitted for the record................ 40
Benjamin Warf, M.D.: Article on Hydrocephalus in Uganda and
selected papers submitted for the record....................... 48
HYDROCEPHALUS TREATMENT IN UGANDA: LEADING THE WAY TO HELP CHILDREN
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TUESDAY, AUGUST 2, 2011
House of Representatives,
Subcommittee on Africa, Global Health,
and Human Rights
Committee on Foreign Affairs,
Washington, DC.
The subcommittee met, pursuant to notice, at 2 o'clock
p.m., in room 2172, Rayburn House Office Building, Hon.
Christopher H. Smith (chairman of the subcommittee) presiding.
Mr. Smith. The subcommittee will come to order. I want to
thank you for joining us this afternoon for this hearing on
this serious and seriously neglected health condition and a
relatively inexpensive, technologically sophisticated
advancement for curing it, created, designed, and perfected by
one of our distinguished witnesses, Dr. Benjamin Warf.
I had the opportunity to learn more about hydrocephalus
when I was traveling in Africa last March. Children who suffer
from hydrocephalus characteristically have heads that are far
out of proportion to the size of their small bodies. I was
horrified to learn that in Africa, where superstitions still
are widespread, hydrocephalus is commonly perceived as a curse,
or caused through witchcraft. A child may be subjected to
horrific abuse and even killed as a result. It was, therefore,
a real eye-opener for me to see the cultural context of
hydrocephalus in Africa and the extraordinary efforts of a
number of courageous, compassionate individuals who are
addressing it.
The human brain normally produces cerebrospinal fluid which
surrounds and cushions it. The fluid also delivers nutrients to
and removes waste away from the brain. This fluid is drained
away from the brain and absorbed into blood vessels as a new
fluid is produced. Hydrocephalus occurs when this draining
process no longer functions properly. The fluid levels inside
the skull rise, causing increased pressure that compresses the
brain and potentially enlarges the head. Symptoms include
headaches, vomiting, blurred vision, cognitive difficulties in
balance, convulsions, brain damage, and ultimately death.
Hydrocephalus can occur in adults but most commonly is present
at birth.
Our witnesses will testify that there are believed to be
more than 4,000 new cases of infant hydrocephalus in Uganda and
100,000 to 375,000 new cases in sub-Saharan Africa each year.
By comparison, in the United States, hydrocephalus occurs in 1
out of every 500 births. Another 6,000 children under the age
of 2 develop hydrocephalus annually. The U.S. National
Institutes of Health estimates that 700,000 Americans have
hydrocephalus, and it is the leading cause of brain surgery for
children in this country. A major difference between the United
States and sub-Saharan Africa is the number of neurosurgeons
available to treat this condition. The United States has 3,500
neurosurgeons, whereas Uganda, for example, has only 4. Dr.
Warf said earlier today, and will say in his testimony, the
number is about 1 per 10 million Africans. There is just such a
dearth of this very important and needed specialty.
Another major difference between the United States and sub-
Saharan Africa is the methodology employed to treat
hydrocephalus. In the Western world, doctors surgically insert
a shunt into the brain in order to drain the fluid through the
neck and into another part of the body where the fluid can be
absorbed.
A shunt is only a temporary solution, and there is always a
danger that any one of a number of things may go wrong. For
example, the tube may become blocked, an infection may develop,
catheters may break or malfunction due to calcification, or the
valve may drain too much or too little fluid. In almost half of
all cases, shunts fail within the first 2 years, and when they
do, the patient must have immediate access to a medical
facility and a doctor who can correct the problem.
This precarious situation must be a constant source of
concern and stress for people in the United States who suffer
from hydrocephalus and for their families. However, in a place
like sub-Saharan Africa, a shunt is fundamentally impractical.
Trained neurosurgeons, as I noted earlier, are extremely few in
Africa, as are properly equipped hospitals; and roads and
transportation systems on the African continent make travel
arduous and long for the vast majority of people, even under
the best of circumstances.
A hydrocephalic child in a place like Uganda, even if he or
she could be treated with a shunt, would have little hope of
living for more than a couple of years.
In March of this year, I had the privilege of meeting with
Dr. John Mugamba, one of the four neurosurgeons in Uganda. With
the help of a video such as we will be viewing during this
hearing, Dr. Mugamba explained the fascinating surgical
procedure, again developed by Dr. Warf, that he is performing
several times daily in Uganda to cure small children of
hydrocephalus. This treatment is being provided at CURE
Children's Hospital of Uganda and is not only overcoming a
medical barrier that children inflicted with the condition
face, it is also serving to educate Ugandan communities that
the condition is not the result of a curse and is not a reason
to kill a child.
Parents whose children have been cured are helping other
parents to identify the condition early in an infant's life and
know where to go for treatment. As I said, one of our
witnesses, Dr. Benjamin Warf, was the first to identify
neonatal infection as the chief cause of pediatric
hydrocephalus in a developing country. He also developed a new
surgical technique, ETV/CPC, which holds great promise not only
for the children of Africa but potentially for children in
developed countries as well. As Dr. Warf will soon testify,
hydrocephalus has never been a public health priority in
developing countries. Most infants in Africa do not receive
treatment. And even when treated, they often succumb to
premature death or suffer severe disabilities. Therefore, it is
imperative that we find the causes in order to develop a public
prevention health strategy.
I am very pleased to welcome our distinguished witnesses
who will explain these innovative procedures, efforts being
undertaken to determine the causes of hydrocephalus, and
initiatives to end the suffering caused by this life-
threatening condition. I would plead that all stakeholders who
care about the children of Africa, including African ministries
of health, nongovernmental organizations, and our own U.S.
Agency for International Development, urgently provide tangible
support for these efforts and for these initiatives.
I would like to now yield to my good friend and colleague,
Mr. Payne, for his opening.
Mr. Payne. Thank you very much. Let me begin by thanking
Chairman Smith for calling this hearing, helping us to shine a
light on the terrible condition that we have heard him describe
and that we will be discussing today. We certainly appreciate
the experts who have given their time to come here today to
enlighten us on this situation.
As Chairman Smith has mentioned, hydrocephalus is an
excessive accumulation of the cerebrospinal fluid in the brain,
and can be congenital or acquired. Congenital hydrocephalus may
be caused by parental factors or genetic abnormalities caused
by infections, tumors, or head injuries. The disease can be
fatal if left untreated.
I am hopeful that by providing prenatal care to mothers,
the President's Global Health Initiative can help prevent the
infection that causes the disease.
The prevalence rate of hydrocephalus is not well known or
not well documented. However, CURE International estimates that
there were roughly 400,000 new cases in 2010. I believe that
the numbers of cases in east Africa and the developing world is
much greater due to a high rate of neonatal infections. In east
Africa, as a region, it is estimated that 6,500 new cases occur
each year and more than 45,000 in sub-Saharan Africa. The
actual number of hydrocephalus cases in Uganda is unknown.
Conservative estimates have the number at 1,000 to 2,000 new
cases occurring each year. Roughly 60 percent of these are
reportedly attributed to neonatal infections.
While Dr. Warf, CURE International, and others are making
an impact in Uganda, it is clear that these innovative
interventions are needed throughout Africa. The resources
available to combat this disease are severely lacking in Africa
and the developing world. In addition to the lack of funding
and access to health facilities, the expertise needed to combat
such a disease is rare. There is an estimated one neurosurgeon
for every 10 million people in east Africa; and as has been
noted, the number in Uganda is one trained neurosurgeon per 8.6
million. So, believe it or not, it is a little bit better in
Uganda than other east African countries.
And really, if you take other countries in Africa, it is
even worse because it is documented that there are no trained
neurosurgeons in a number of countries in Africa--zero, not
one. So we see that we have a very serious situation where in
the U.S., we have 2.67 physicians per every 1,000 people; and
for the neurosurgeons, we have 1 neurosurgeon for every 88,000
people in America. So if you see where we have 1 per 88,000 in
the U.S., and 1 for 10 million, or zero for millions, we see
why we have such a serious problem.
Of course the resources available to combat this disease
are severely lacking, as we can see by the number of
physicians. And in addition to the lack of funding and access
to health facilities, the expertise needed to combat the
disease is rare, as we mentioned, with the lack of trained
people to deal with this.
I am interested in hearing from our experts here today
about how the U.S. Global Health Initiative can best promote
the training of specialized doctors and surgeons to combat this
disease and ones like it. I am also interested in learning
about what measure can be taken to prevent the disease
altogether.
So I think we need to really try to work on prevention. It
is going to be difficult to get people in to treat and to care
for, but if we can deal with an overall prevention, I think
that our dollars will go much further and really keep a lot of
agony from people.
So I certainly look forward to hearing the witnesses. And
actually kind of the fact that we lack the training, I just
want to mention that I am cosponsoring a bill on African higher
education. We call it the African Higher Education Advancement
and Development, we call it the AHEAD Act for 2011, where we
are really trying to deal with higher education in Africa,
regardless of whether it is medicine, whether it is just basic
education, whether it is teacher training.
As we see Africa moving more to universal elementary
education, most countries now have decided that there is
universal elementary free education, although there are still
school fees but they are minimal. And now that the girl child
has finally been recognized as an entity that ought to be
included in elementary and secondary education, at least we are
seeing a move for girls in elementary education, and hopefully
we will see it in secondary education.
And of course, finally, getting into higher ed, I think
that we need to try to move forward assistance in higher
education so that doctors and neurosurgeons and people that we
need to have positioned in Africa, Africans themselves, will be
able to have the training so that we can deal with this issue.
So, Mr. Chairman, I yield back the balance of my time.
Mr. Smith. Mr. Payne, thank you very much.
We are joined by the chairman of the Commerce, Justice,
Science, and Related Agencies Subcommittee of the
Appropriations Committee, Congressman Frank Wolf.
Mr. Wolf. Thank you. I want to welcome the witnesses. I
will thank Mr. Smith for having the hearings. We were talking
about this issue on the floor. I don't serve on this committee.
I have to go to another place soon, but I just wanted to come
by to hear your testimony. Thank you for the invitation, Mr.
Smith.
Mr. Smith. Chairman Wolf, thank you very much.
I would like to now introduce our very distinguished panel,
beginning with Dr. Benjamin Warf who began his career in
pediatric neurosurgery at Children's Hospital Boston in 1991 as
the first pediatric fellow in neurological surgery. In 2000, he
and his family moved to Uganda to help found a hospital for
pediatric neurosurgery with CURE International, a nonprofit
Christian medical mission organization. While at CURE, Dr. Warf
served as medical director and established the only pediatric
neurosurgery hospital in sub-Saharan Africa.
Dr. Warf was the first to identify neonatal infection as
the chief cause of pediatric hydrocephalus in a developing
country, and remains involved in working to uncover its
pathogenesis in order to ultimately construct prevention
strategies. He developed a novel surgical technique for
treating hydrocephalus in infants, known as ETV/CPC. Since
returning to the U.S., Dr. Warf has investigated the role of
ETV/CPC in North American instances and also continues to work
in international neurosurgery development.
He rejoined the team at Children's Hospital in Boston in
2009, and was appointed director of Neonatal and Congenital
Anomaly Neurosurgery. He is associate professor of surgery at
Harvard Medical School and has an affiliate appointment with
the Program for Global Surgery and Social Change in the
Department of Global Health and Social Medicine.
We will then hear from Dr. Steven J. Schiff, Brush chair
professor of engineering and director of the Penn State Center
for Neural Engineering. He is a faculty member in the
departments of neurosurgery, engineering science, and mechanics
and physics. A pediatric neurosurgeon with a particular
interest in epilepsy, hydrocephalus, and Parkinson's disease,
Dr. Schiff holds a Ph.D. in physiology and an M.D. from Duke
University School of Medicine, and trained in adult and
pediatric neurosurgery at Duke and Children's Hospital in
Philadelphia. He is perhaps the only fellow of both the
American Physical Society and the American College of Surgeons,
and he serves as a divisional associate editor of Physical
Review Letters. He has been listed in the Consumers Research
Council of America's guide to top physicians and surgeons, and
he plays the viola with the Nittany Valley Symphony. There is
no time for that today, though.
We will then hear from James Cohick who has served as a
health care executive in the fields of specialty medicine and
surgery since 1983. For 16 years, he served in field and in
corporate administration with U.S.-based specialty hospital
networks. And for the past dozen-plus years, he has been a part
of internationally focused pediatric specialty hospitals and
organizations.
In 1997, Mr. Cohick and his family moved to Kenya to start
and to run the first CURE International hospital, the first of
its kind on the African continent. In addition to serving as
executive director of the hospital, he directed regional
operations for east Africa for CURE, which involved the
creation of the two other facilities.
Returning stateside in 2000, he continued to provide
oversight of CURE International's growing network of hospitals
and initiated a CURE global clubfoot program. After completing
his MBA and studies at the Kellogg School of Management, he
served as hospital administrator at the Shriners Hospital for
Children in Chicago and was elected to the board of directors
for Metropolitan Chicago Healthcare Council, a number of
committees for Illinois Hospital Association, and continues to
be a fellow with the American College of Healthcare Executives.
Now, as senior vice president of specialty programs at CURE
International, Mr. Cohick provides executive leadership to CURE
Clubfoot Worldwide and CURE hydrocephalus.
Dr. Warf, if you could proceed.
STATEMENT OF BENJAMIN WARF, M.D., DIRECTOR, NEONATAL AND
CONGENITAL ANOMALIES NEUROSURGERY, DEPARTMENT OF NEUROSURGERY,
CHILDREN'S HOSPITAL BOSTON
Dr. Warf. Thank you very much, Chairman Smith, Congressman
Payne, members of the committee. It is a great honor to be here
today, and I appreciate the opportunity to testify about this
devastating condition affecting ultimately millions of babies
in Africa and across the developing world. I am currently at
Children's Hospital Boston and am an associate professor of
surgery at Harvard Medical School. But from 2000 to 2006, my
family and I lived in Uganda as medical missionaries to help
start a specialty hospital for pediatric neurosurgery, CURE
Children's Hospital of Uganda.
From its opening, our hospital was inundated with a steady
stream of mothers seeking treatment for their infants with
hydrocephalus, a condition in which the fluid is unable to
circulate out of the brain and be absorbed normally. This leads
to mounting pressure, rapid expansion of the infant's head,
progressive damage to the developing brain, and usually death,
if untreated.
Astonished by the staggering volume of patients, we were
presented with two questions: One, what were the chief causes
and burden of disease in this part of the world? And two, what
was the best way to treat this condition in the context of
rural sub-Saharan Africa?
The burden of hydrocephalus in Africa is arresting. We
estimate there are between 100,000 and 375,000 new cases of
infant hydrocephalus each year in sub-Saharan Africa, with an
annual economic burden of untreated hydrocephalus from $1
billion to tens of billions of dollars, depending on the type
of economic analysis used.
This economic burden is comparable to published estimates
of other common surgical conditions in Africa, such as
malignancies, perinatal conditions, congenital anomalies,
cataracts, and glaucoma. Yet we are the first to highlight
infant hydrocephalus as a serious health burden in any region
of the developing world.
In the U.S., most infant hydrocephalus is either congenital
or related to brain hemorrhage in very premature babies. We
discovered that in marked contrast to developed countries, 60
percent of the Ugandan cases were caused by infections, mostly
within the first month of life, the neonatal period. The
infections were characterized by a febrile illness, usually
accompanied by seizures, which was followed by rapid
enlargement of the infant's head. In addition to the resulting
hydrocephalus, the brains of these children contained frank pus
and blood and substantial destruction of tissue. We could
successfully save the vast majority of these children by
treating the hydrocephalus. But the primary brain injury from
the original infection was often devastating. In a study now in
press, we found that a third of these children had died by 5
years and a third of the survivors had severe disabilities. The
importance of prevention or early treatment of these infections
was obvious. But we were unable to isolate any bacteria from
the fluid at the time of the surgical treatment.
This is where my valuable colleague Dr. Schiff here and his
team at Penn State have come to the rescue, as he will give
testimony.
Infant hydrocephalus is almost always treated by implanting
a tube, called a shunt, which drains the fluid from the brain
into the abdomen. In the U.S., the average patient requires two
to three operations per shunt failure during their childhood.
Shunt failure is a life-threatening emergency in children. But
in rural Africa, accessing emergency neurosurgical care is
impossible. We developed a novel way to treat hydrocephalus
using a scope that avoided shunt dependence in more than half
these babies overall, including those with postinfectious
hydrocephalus. The operation makes a new pathway for the fluid
to escape the spaces in the brain and cauterizes the tissue
that makes the fluid, thus decreasing its rate of production.
We have since learned to predict which patients are most likely
to be treated successfully in this way, and have trained and
equipped other surgeons in the technique which will be
demonstrated shortly in a brief video.
Detailed economic analysis estimates a lifetime treatment
cost of around $90 per disability-adjusted life-year averted
using the treatment paradigm we developed at CURE Children's
Hospital of Uganda. This cost compares very favorably to the
few other surgical interventions that have been studied in
developing countries.
Hydrocephalus has never been a public health priority in
the developing countries. Most infants in Africa receive no
treatment. Training and equipping centers in an evidence-based
treatment paradigm is essential, and it is imperative that we
identify the causes of infection in these babies so that public
health strategies for prevention can be constructed and
millions of lives saved. These are the challenges that lie
before us. Thank you very much.
And we have a video now that I would like to show. The man
you will hear, Dr. Mugamba, a Ugandan neurosurgeon whom I
trained in the technique and worked with me for a couple of
years in Uganda before I came back to the U.S.
[Video was played.]
Dr. Warf. This is a scene in our operating room in Uganda.
It just takes about 1\1/2\ minutes or so to demonstrate the
setup in the operating theater. There is Dr. Mugamba making the
small incision in the infant's scalp just over the soft spot,
the anterior fontanelle. And in a few moments, he will insert a
small flexible fiber-optic endoscope into the cavity in the
brain, the ventricle of the brain. And you will see, as I will
point out, where he makes the opening to allow the fluid to
escape.
That is a view from inside the brain. On the left side of
the screen is actually where the pituitary gland is. To the
right, just off screen, is the brainstem. This is the floor of
the third ventricle. He is making an opening in the floor of
the third ventricle where the fluid is trapped. And now the
fluid will be able to exit this new opening which bypasses
levels of obstruction and allows the fluid to escape to the
outside of the brain into the spaces where it can normally
circulate and be absorbed. This part of the procedure is called
the choroid plexus cauterization. This is the tissue that is
being cauterized, the tissue that makes the spinal fluid. We
found that in infants, the endoscopic third ventriculostomy
success rate was greatly increased by addition of this
procedure at the time of the surgery. The innovation here was
combining the two techniques which hadn't been tried before.
Thank you very much.
Mr. Smith. Dr. Warf, thank you so very much.
[The prepared statement of Dr. Warf follows:]
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Mr. Smith. Dr. Schiff.
STATEMENT OF STEVEN J. SCHIFF, M.D., DIRECTOR, CENTER FOR
NEURAL ENGINEERING, PENNSYLVANIA STATE UNIVERSITY
Dr. Schiff. Chairman Smith and Congressman Payne, thank you
very much for the invitation to testify today.
I am a pediatric neurosurgeon who started my career
practicing at the Children's Hospital here in Washington, DC. I
now direct the Center for Neural Engineering at Penn State
University, seeking solutions to problems that lie at the
intersection of medicine, engineering, and science.
I have known Dr. Warf for many years. And hearing of his
efforts to address childhood illnesses in Uganda, I visited him
in 2006 to see how our engineering center might help his
patients. It was readily apparent that he and his colleague,
Dr. Mugamba, were inundated with cases of postinfectious
hydrocephalus. At that time they had treated over 1,000
patients without being able to culture any of the causative
organisms in their laboratory.
I asked Dr. Warf what the single most important problem was
that he faced at the hospital, and he said, Finding out what
causes these cases. I have since devoted much of my
professional effort toward seeking those answers.
We began by bringing specimens from Ugandan infants back to
Penn State and we threw the book at them in terms of advanced
ways of growing organisms. We grew nothing. We then turned to
DNA collection tools police use at crime scenes and set up a
little forensics lab at CURE Hospital. We gathered DNA from the
brain fluid of infants at the time of surgery to sequence the
bacterial genes that might be present.
My Penn State colleagues, Vivek Kapur, Mary Poss, and I
found evidence of bacteria within the brain fluid in nearly
every one of these children. The bacterial types appeared
consistent with those found on a farm, with animals. The
bacterial spectrum also was noted to change with the various
seasons and with the rainy seasons in Uganda. The most
prevalent bacteria was called Acinetobacter, a notorious
organism that has caused terrible wound infections in our
military personnel in both Vietnam and the Iraq-Afghanistan
conflicts. We then undertook field work to track down the
infants in which we had found evidence of Acinetobacter
infection.
Environmental samples from huts, dung, and water supplies
yielded very close genetic matches for the organisms that we
had previously retrieved from these infants' brains. Our
findings were significant, but did not determine what initially
made the infants sick. Most of them developed serious
infections within the first month of life, called neonatal
sepsis.
The World Health Organization estimates that infections
lead to the death of 1.6 million infants each year, the
majority in sub-Saharan Africa and southern Asia. The causal
bacteria in the developing world appear different from those we
see in the U.S. And most of the culture results from septic
African neonates have failed to grow out organisms in any
laboratory.
We began a study last year of neonatal sepsis at one of
Uganda's major referral hospitals at the Mbarara University of
Science and Technology. Last year we recruited 80 mother/infant
pairs, and in partnership with their head pediatrician, Dr.
Julius Kiwanuka, collected spinal fluid and blood from the
babies and birth canal specimens from the mothers. We are now
collaborating with the J. Craig Venter Institute in Washington,
DC, to perform an exhaustive sequencing of the bacterial and
viral content of these samples.
Since CURE treats all the hydrocephalus that develops in
Mbarara patients, once we have studied a sufficient number of
patients with neonatal sepsis from Mbarara, we will know which
infections lead to hydrocephalus, treated at CURE Hospital.
Recently, by fusing Dr. Warf's case data with U.S. NOAA
satellite data, we demonstrated a strong link between climate
and post-infectious hydrocephalus. Infants get sick at
intermediate levels of rainfall, emphasizing the role of the
environment in this condition. Our work demonstrates that we
are benefiting from the United States' technology in ways we
had never anticipated.
We are committed to optimally surgically treat the large
numbers of children who have hydrocephalus. However, we will
never operate our way out of this problem. A critical long-term
goal is more effective treatment for children with neonatal
sepsis to decrease the brain complications in the survivors.
And most importantly, once we understand the root causes, we
need public health measures to prevent these infections.
Hydrocephalus is thus a global health issue well beyond the
specifics raised by a small, very fine African hospital, a
great U.S. charitable organization that brings the highest-
quality medical care and compassion to children around the
world, and the finest physician I have ever met, Dr. Warf.
Of the 130 million children born around the world each
year, we are inadequately addressing the 1.5 million who die of
preventable newborn infection. As a physician and scientist and
as a father, I am struck by how much we don't know about
newborn infections in developing countries. I am concerned that
one reason is that the newborn infants who die there have no
political voice.
I will offer three conclusions in closing: First, we have
not paid sufficient attention to the massive loss of human life
from newborn infections in the developing world; second, we now
have the technology to shed new light on the causes of a
substantial fraction of these deaths; and third, we can now
develop sustainable strategies and scalable technologies to
more effectively prevent the deaths and tragic survivals from
these devastating illnesses. The fate of millions of lives
depends on our actions. Thank you.
Mr. Smith. Dr. Schiff, thank you so very much.
[The prepared statement of Dr. Schiff follows:]
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Mr. Smith. Mr. Cohick.
STATEMENT OF MR. JIM COHICK, SENIOR VICE PRESIDENT OF SPECIALTY
PROGRAMS, CURE INTERNATIONAL
Mr. Cohick. Chairman Smith, Congressman Payne, and members
of the committee, thank you for inviting me to discuss the
problem of hydrocephalus in the developing world and what CURE
International is doing to heal children suffering from this
devastating condition. It is an honor to be here with Doctors
Warf and Schiff, who have contributed enormously to the
understanding of this condition and innovative new treatment
techniques which make possible the healing of infants in the
world's poorest countries.
Fifteen years ago, as the executive director of the first
CURE International hospital in Kenya, I opened and then ran the
hospital for a number of years. I now serve as the senior vice
president of specialty programs for CURE International, an
American-based nonprofit organization. Our mission is to heal
disabled children. We operate hospitals throughout the
developing world, from Afghanistan to Zambia. CURE
Hydrocephalus is perhaps our most ambitious and innovative
initiative.
Our unique work at CURE Children's Hospital of Uganda is
the endoscopic treatment of children with hydrocephalus--that
condition is more commonly known as water on the brain--which
can be present at birth or caused later by infection.
The CURE Hydrocephalus Initiative was born at the CURE
Uganda Hospital because of the work of Dr. Warf during his
tenure as medical director there. While there, he also trained
Dr. John Mugamba, the current medical director, and over a
dozen other surgeons from both the first and developing world
arenas.
More than 650 surgical procedures are performed annually at
the CURE Uganda Hospital to treat hydrocephalus, more than any
other hospital in the world. We estimate that in 2010, there
were more than 4,000 new cases of infant hydrocephalus in
Uganda and nearly 300,000 in the developing world, using a
ratio of 3 per 1,000 births. Virtually all these children, if
left untreated, die. Over the next 5 years, that means as many
as 1.5 million infants in the developing world could die from
hydrocephalus.
The majority of hydrocephalus cases treated at our
hospitals, when medically appropriate, involve the novel
combination of two surgical procedures described by Dr. Warf,
commonly known as ETV/CPC. The ETV/CPC technique truly is a
cure for children suffering from hydrocephalus, as it
eliminates the need for a shunt in the brain, the standard
hydrocephalus treatment, which can need a replacement two to
three times, even up to five times over a child's lifetime. As
you can imagine, this is a huge logistical and economic
challenge in developing-world locations like Uganda. Too many
children with hydrocephalus are never treated and die. And many
treated with a shunt live only a short time before their shunt
fails and their families are unable to access further medical
care.
Mr. Chairman, hydrocephalus is a global concern that is
widespread in poor countries and vastly underreported. With new
techniques like ETV/CPC, we have the opportunity to save
thousands of children and to end the suffering of their
families. What is needed is to scale-up proven treatment by
increasing training of national surgeons and creating the
proper infrastructure to support their ongoing work.
To give you a sense of the scale of this problem, there are
four trained neurosurgeons in Uganda, a country of 33.6 million
people. There is approximately one neurosurgeon for every 10
million people in east Africa, as was mentioned before. In the
United States, we have 3,500 board-certified neurosurgeons,
which means we have 110 times the access to treatment than that
of the people living in east Africa.
Our effort to address this problem is summed up in four
initiatives that make up CURE Hydrocephalus: First,
strengthening national health systems through training and
equipping national surgeons from the developing world in
advanced surgical treatment methods for hydrocephalus. Second,
enabling those surgeons to use their new skills by providing
them the appropriate operative equipment. Third, developing the
IT infrastructure to capture patient care data to facilitate
research with our strategic partners to advance the
understanding of causes, the understanding of best practices,
and the effective methods of prevention of postinfectious
hydrocephalus.
And, finally, demonstrating compassionate care and concern
for the world's most vulnerable children, their parents and
their families by ongoing follow-up.
Training, treatment, research, prevention, and
compassionate care will change how hydrocephalus is treated. It
will translate into significant cost savings for fragile,
developing world-health systems.
Mr. Chairman, thank you again for your personal interest in
this life-threatening medical condition and your leadership in
helping to establish creative and effective ways to save more
lives and end the suffering of many thousands of children. My
colleagues and I at CURE International and our partners are
excited and stand confident to go forward as we are called upon
to do so.
Mr. Chairman, this may have already been handled but I do
have a document to submit as part of the record, if that would
be permitted.
Mr. Smith. Without objection, it will be made a part of the
record. And any additional materials from any of our three
distinguished witnesses will likewise be added.
Mr. Cohick. Thank you.
Mr. Smith. Mr. Cohick, thank you very much for your
testimony.
[The prepared statement of Mr. Cohick follows:]
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Mr. Smith. Mr. Wolf, do you have any questions?
Mr. Wolf. No. Thank you, Chairman.
Mr. Smith. Let me begin with opening questions. First of
all, I think it needs to be shouted from the rooftops that
hydrocephalus is a preventable tragedy. And the solutions that
you have pioneered, and have done so for over a decade, remain
the best-kept secret, I think, in Washington. There are many
people, Africans, who have been working health issues--and I
have seen it myself and I have raised and handed out some of
the materials that you have provided to my office and to me and
they are shocked--they had no idea the prevalence--up to
375,000 as, Dr. Warf, you testified--new cases per year. And no
idea, frankly, that there is an ongoing and very, very
effective, efficacious solution that you are employing every
day, but you need more people and more resources to expand the
solution.
So again, on behalf of--I know Mr. Payne and I, all members
of our subcommittee, we thank you for the pioneering
humanitarian work that you have done. It is absolutely
extraordinary.
If you could perhaps, Dr. Warf, describe the life cycle of
a child with hydrocephalus. You know, as the pressure builds,
the pain perhaps that he or she may experience, and what is the
ultimate consequence if untreated?
Dr. Warf. Yes, sir. Well, as the fluid is trapped in the
spaces in the brain and as the brain continues to make more
fluid at the rate of about an ounce every hour, the head begins
to expand, sometimes to enormous sizes. The soft spot on the
baby's head begins to bulge. The veins on the scalp begun to
bulge. The eyes begin to be deviated downward in something
called a sunset sign. The children become listless. They feed
poorly. They are irritable. They are in pain. They vomit. About
half of them will be dead by the age of 2; the other half will
be severely devastated.
Sometimes hydrocephalus, after it becomes quite advanced,
can sort of accommodate or spontaneously arrest itself, and
that is why some of them survive. The bad news is that they all
virtually either die or are badly disabled. The good news is
that it is an imminently treatable condition.
If hydrocephalus is the only problem--for instance, a
congenital cause of hydrocephalus--and you treat the
hydrocephalus early, those children can be quite normal. In a
case where the hydrocephalus is secondary to another event,
such as an infection or a hemorrhage, there is sometimes
varying degrees of primary brain injury, like we described in
the children with postinfectious hydrocephalus.
I would also add that children that are shunt-dependent--
even in developed countries, in our own practices here in the
U.S.--are fortunate to have access to a safety net, such that
when their shunt malfunctions, they almost always have
emergency access to neurosurgical care, and we fix those shunts
at 2 o'clock in the morning, or whatever it takes, because it
is an emergency.
But one of the things that drove me to look for other
solutions and to push the envelope a little bit on the
endoscopic kinds of treatments was knowing that when I put a
shunt in one of these children and they went back into the
bush, that when the shunt failed later in their life, when the
soft spots of the skull had closed up, that they would almost
certainly die before they could find their way to a hospital
where anybody could do anything about it.
Mr. Smith. Thank you. Dr. Schiff, you talked about the
discovery of--you said the most prevalent bacteria was
Acinetobacter, a notorious organism that has caused the deaths
or wound infections to our military personnel in Vietnam and
Iraq and Afghanistan.
Is that the only one? Were there other bugs, if you will,
or infections? And secondly, Dr. Mugamba--and you implied this
as well--when we met with him in Africa, he said that a likely
major cause of hydrocephalus--and I think it is based on the
work that you have done as well, the breakthrough work in
Uganda--is the use of cow dung, which is cheap and plentiful,
to cauterize the umbilical cord following birth, which normally
occurs at the mother's home. And I am wondering if that is one
way that some of these children are contracting hydrocephalus,
infection--you know, born--and whether or not the ministries of
health, for example, of Uganda have shown any interest in
better birthing practices to mitigate the passage of this
terrible infection?
Dr. Schiff. I hope that in a few years we can come back and
be very clear that we truly have worked all of these mysteries
out. We find a great deal of evidence for Acinetobacter and
related organisms in the brains of these children. That doesn't
tell us, though, what caused the initial devastating infection
that may often have destroyed a great deal of brain and leaving
them in a devastated state.
So we are conducting several different clinical trials,
trying to untangle this. We have a trial at the CURE Hospital
where we are comparing children with hydrocephalus, who have a
history of serious newborn infection, with those who don't. It
is entirely possible. You and I brush our teeth in the morning.
We shower our bodies with bacteria. It may be that these
children are exhibiting for us a great deal of the
environmental bacteria that they encounter as newborn infants.
In field work, I must say, it is rather an eye-opener for
one of us to go to the rural settings and understand the
conditions in which these newborn infants need to survive. The
huts are actually lined with dung, purposefully. It is a very
good insulator against both rain, and it keeps out ants, which
are unpleasant. The patios around the huts are stripped of
vegetation, and dung is pounded in to keep the dust down and
the vegetation away. Granaries are lined with dung for ants and
rain. So there is tremendous exposure, in addition to cultural
practices of certain Nilotic peoples and the Maasai, for
instance, of using dung on umbilical stumps. So infants are
exposed to a great deal of this.
One of the other things we need to do is to nail down what
causes the very common scenario that Dr. Warf mentioned, not
just high fevers and a serious infection in the newborn period,
but almost all of these children have had epileptic seizures to
go along with it. And we have what appears to be organisms that
have a predilection to get into the brain. Are they bacteria or
viruses, one or more, early in life, that opens things up so
that they are very able to show you what they are exposed to in
the environment, because we then sequence it from the CURE
Hospital. This is an example of the kind of complexity that we
face. And being able to work all this out now is
straightforward.
We fortunately have the ability to go--even in burned-out
infections, go back, find the fragments of the organisms, use
new techniques to do this. And I think one of our challenges
will be how do we bring this to the next country. You can't
have the major science institutes in the United States running
very expensive sequencing and sampling on every site in the
developing world. But I really do think that in the coming
years, being able to understand how to go into another country,
whether it is east Africa, southern Asia, and the other sites
that seem to have many, many of these cases, learn how to
uncover the organisms, learn how to keep surveillance in those
countries so we can do two things: Learn how to better treat
the infants when they are sick and, most important, be able to
institute rational public health strategies to cut down the
numbers of these infections. Thank you.
Mr. Smith. Goal number four obviously seeks to drastically
reduce the number of children who die, childhood mortality,
and, I would add, morbidity as well. Has UNICEF and other U.N.
agencies, NGOs in general that deal with health issues,
including the USAID, the European Union and its health
initiatives, particularly in Africa, have they addressed the
hydrocephalus epidemic that is occurring, which is a
preventable and very treatable--preventable, if you stop the
infection in the first place, obviously the children don't get
sick, but you also have a solution if they do get sick. Are
they addressing this?
Dr. Warf. To my knowledge, no, sir. There has not been much
of a focus on this at all. I mean there are many overwhelming
problems obviously, and I think hydrocephalus has been below
the radar screen. I recently attended the World Health
Organization rollout of their report on disability. And many
things were mentioned in that report. But hydrocephalus and the
infection of these children were not among the things that are
talked about in that report. So I think it is something that
just needs to be brought to the attention of the kind of bodies
that are able to fund work in this area.
Mr. Smith. Which is precisely what you are doing. So I
think you are doing an enormous service for those children and
their parents and siblings.
If I could, has the Gates Foundation or the ONE Campaign or
any of the other very laudable and noble charities, have they
joined in as far as you know?
Dr. Warf. Not yet.
Mr. Smith. Not yet. Let me just ask, with regards to ETV/
CPC, what is the acceptance of that domestically here in the
United States, could you compare the costs of shunt
interventions versus that procedure that you have created and
perfected?
Dr. Warf. Well, yes. That is sort of a multianswer here. So
first of all, I should make it clear that ETV has been done for
quite some time. It was found to be not very successful in
babies under 1 year of age, or even under 2 years of age, and
it was rarely done and still isn't done that often. In an
effort to find a way to make it more successful and to be able
to avoid shunt dependence in babies from the beginning, what we
did was we added an old idea which had been practiced a number
of years ago, before shunts actually, as an idea of how to
treat hydrocephalus, and that was to reduce the tissue that
makes the fluid. But that had been largely abandoned. It was
not effective by itself. The idea of combining the two
procedures was to address both the obstructive problems with
the hydrocephalus, bypassing the fluid obstruction to getting
it out of the brain and allowing an exit for that, and also
addressing what some people call a communicating hydrocephalus
which is left over sometimes in babies after the ETV. They
can't handle absorbing the fluid once it gets out. So by
reducing the tissue somewhat and reducing the rate of
production, we found in a fairly large study that there was a
significantly increased success rate with the ETV.
There is a growing acceptance of this in the U.S. It is our
preferred primary treatment of infant hydrocephalus at
Children's Hospital in Boston. There are others that have begun
to use the technique. And I think the main shift in culture has
been a shift away from simply placing a shunt in a baby, to
thinking could this be avoided by a bit more sophisticated of a
technique that takes some different skills but it is very often
well worth doing.
For instance, a common cause of hydrocephalus in the U.S.
is that which is associated with spina bifida. About two-thirds
of those children have hydrocephalus that needs to be treated.
Those children were all treated with shunts up until fairly
recently. What we had found was that the ETV by itself was only
successful in 35 percent of those babies. But with the combined
procedure, it is successful more than 75 percent of the time.
That is not only the Ugandan data but is now, as the numbers
grow, we are matching those same success rates in the U.S.
There is a growing interest in that, especially in the spina
bifida community. So it is a matter of practice change and
those things can happen fairly slowly.
Mr. Smith. Dr. Schiff, you talked about how the data from
Dr. Warf's cases and NOAA satellite data demonstrated strongly
a link between climate and postinfectious hydrocephalus. And
you pointed out that infants get sick at intermediate levels of
rainfall. Why is that? Do we know?
Dr. Schiff. We don't know for sure yet. But it is very
substantial and it points to an environmental component to
this, which we will need to understand and then take into
account, to know how to rationally reduce the numbers of
infections. There are other serious infections in the world
where this type of rainfall link has been shown. The one that
is most famous is called melioidosis. It is a terrible skin
infection in southeast Asia and northern Australia. The
bacteria is so nasty, it is on our select agent list now. But
in speaking to the doctors who have worked that out, they had
to learn how the soil temperature and the soil moisture allowed
that bacteria to get to the surface at certain times of year
and then infect people directly.
Those are the kinds of things that, if we need to do that
here, then it is straightforward and it will give us the
answers to design good preventive measures.
Mr. Smith. Has the CDC worked with you on that? Because it
seems to me this is the beginning of a prevention strategy that
will drastically--potentially--reduce the number of
hydrocephalic children suffering from hydrocephalus.
Dr. Schiff. Not yet. But this is all relatively new
findings and we will now be in the process of raising the
resources that we need to get to the bottom of this.
Mr. Smith. Thank you. Mr. Payne.
Mr. Payne. Thank you very much. I certainly appreciate your
testimony. And just sort of on this whole question of water-
borne diseases, even though it is kind of off the specific
topic here, in your opinions, how much preventable diseases are
actually caused by impure water, you know, water-borne
diseases, things like diarrhea, just diseases in general, and
especially for newborns and infants and children?
In your opinion, investment in clean water--do you think
that that probably would be one of the greatest preventative
methods to preventing many childhood diseases and even in
particular what you are talking about, although you are talking
about rainfall, which is a little bit different than the
question of clean water and things of that nature. Would any of
you like to tackle that?
Dr. Schiff. Congressman Payne, there is nothing I think I
have seen more shocking in my work than unprotected wells in
rural villages in Africa, and what people need to drink and to
bathe their children in. And there is no question that you are
right; that the availability of potable drinking water that is
safe is an enormous factor in public health around the world.
When I started this work, I thought that was going to be
the likely answer to these children. But we see these cases in
villages with excellent government-drilled boreholes, very good
water supplies, and in villages with terrible water supplies. I
am not going to discount that there may not be an important
role from water supplies; and if that is what we find, then the
answers are going to be straightforward. But my suspicion is
that it is going to be, as with everything else in this story,
more complicated than we had hoped.
Mr. Payne. Thank you. Although it is not well documented,
general estimates note that the developing world has a
significantly higher prevalency of hydrocephalus than the
developed world. Is there one form of hydrocephalus that is
more common in the developed world versus the developing world?
And in your opinion, what accounts for such differences?
Dr. Warf. I can answer that, Congressman Payne.
There is a huge difference. So what we showed in Uganda was
that 60 percent of our cases--and this has continued on as we
have gone into the thousands of cases and we keep looking back,
it persists--60 percent of cases that we see of infant
hydrocephalus are secondary to these infections.
We rarely see hydrocephalus from that cause in North
America, for instance. A common cause of hydrocephalus here is
one that we never see in Africa and that is hydrocephalus
secondary to hemorrhage in the brain of prematurely born
infants, which obviously don't survive in Africa because they
don't have neonatal intensive care units to keep them alive.
So I like to say that post-infectious hydrocephalus is a
disease of poverty, and post-hemorrhagic hydrocephalus is a
disease of prosperity. There are other causes in the U.S. which
are common, congenital causes, congenital obstruction of one of
the pathways that the fluid has to get out, the hydrocephalus
associated with spina bifida and so forth.
But what we don't see very much of ever are these post-
infectious cases. So what I suspect is that with the high birth
rates in Africa, we probably see the same incidents of the
other causes of hydrocephalus that we see in developed
countries and then, on top of that, another 60 percent from the
infections that we don't see at all here.
Mr. Payne. Actually, with the sort of health care costs say
in Uganda and throughout the developing world--of course, we
know it is much higher than in other places, due to lack of the
resources and the ability of the average income of people, the
level of consumer income--what does the U.S. and the
international community need to do to make treatment more
accessible for patients and families in the developing world?
Are what are the differences in terms of costs and technical
barriers in using stints versus the ETV or the combined ETV/
CPC? Can more be done to prevent the disease, and would
preventable measures be more cost-effective?
Dr. Warf. I think preventable measures are certainly more
cost-effective, if we can eliminate the neonatal infection that
causes not quite two-thirds of the cases, that would be almost
certainly more cost-effective. However, there will always be
hydrocephalus and fairly large numbers of it in populations
that have high birth rates because it is not an uncommon
disease of childhood from congenital causes.
In regard to the endoscopic treatment versus shunting, we
have actually done fairly detailed--well, people I worked with
that are economists, I should say, have done fairly detailed
analysis of costs. And what we found is that the more patients,
hydrocephalus patients, that you have in your population with
shunts, the less cost-effective the treatment, the more cost
burden there is because those shunts require maintenance.
The numbers that we used for determining this was based on
the type of shunt we were using in Uganda, which was a very
inexpensive shunt that cost about $35 that is made in India. I
did a prospective randomized trial that was published in 2005
that showed that the outcomes for a year of using that shunt
were no different than the outcomes for using one of the
commonly used American shunts, which costs $650. And the shunts
that we typically use now in my practice cost around $1,000,
which is impossible for children in Africa. So even at the
cheap shunt numbers, the more children that you can spare shunt
dependence and treat endoscopically, the more cost-effective it
is.
We also looked at the initial cost of treatment in our
hospital, including everything, keeping the lights on,
salaries, depreciations, all those kinds of things, including
the cost of the shunt and the cost of the endoscopy equipment.
And we found the upfront cost of treatment to be almost the
same, so the cost benefit is there.
Mr. Payne. Actually, what happens to an infant, I mean,
that goes untreated in some remote village in a country where
there is just no care? What happens? Does it grow? Does the
child have excruciating pain? Do they die after a certain
number of years? What is the life of an untreated person?
Dr. Warf. I can give you about three different scenarios.
In Uganda at least, a baby with a growing head like that is
often thought to be the result of a curse, and sometimes those
babies are killed. So they die in that way. We know that to be
true.
The second scenario is the child who has the progressive
head growth, the mother does the best she can. The head gets
very heavy, and the child gets hard to handle. It eventually
dies either directly from the elevation of pressure in the head
or dies from failure to thrive, because of poor feeding and
vomiting and the general effects of being so debilitated.
And the third scenario is the child that actually survives
the early childhood hydrocephalus. The course arrests itself,
but the patient, the person has a very large head is, is quite
cognitively disabled, usually or often blind and spastic, much
like a person that you might see that is severely involved with
cerebral palsy.
I never will forget visiting one village when I first moved
to Uganda and before we opened the hospital, I was trying to
get a feel for how things were, and I visited an area where I
was told there was a patient with hydrocephalus. This was a
teenage girl with a head about the size of a basketball, whose
mother dragged her out and put her on a mat under a tree every
day and gave her a mango to chew on. Her mother took very good
care of her, but she was totally disabled and unable to
communicate or do anything. So there is death, and then there
is tragedy beyond death.
Mr. Payne. Thank you.
I yield back.
Mr. Smith. I recognize Ann Marie Buerkle, who, just by way
of background to our witnesses, combines a unique background.
She is former Assistant New York State Attorney General, so she
is a lawyer, but she is also a registered nurse.
Ms. Buerkle. Thank you, Mr. Chairman, and thank you for
organizing and hosting this extremely important hearing today.
I am much prouder of my background in nursing; I often lead
with that.
But in my profession as an attorney, I represented a
hospital so I have spent my life in health care, so this is
certainly of importance to me.
I have a couple of questions, and Mr. Cohick this is for
you, but anyone else who might have an answer to it. We hear
that our country is a very generous country, and we fund HIV/
AIDS, malaria, many other diseases throughout the world. As you
all know and you have suffered through these debt negotiations
and all that has been going on here in Washington, money is
becoming much more of a premium. Help us to justify this cause
in funding for hydrocephalus.
Mr. Cohick. Well, I think I personally and we all recognize
we are in that situation, and it is a difficult time to indeed
bring this type of scenario to you and what can be done.
Somewhat germane to one of the questions and answers given
before, this is very cost-effective. The comparison between
what we do in Uganda and what is done in the U.S. is roughly at
5 percent, our cost, looking at surgery, one surgery done in
Uganda versus one surgery in the U.S., is roughly 5 percent of
what it costs in the U.S. When you take into account the
surgeries or the subset of those that can be helped by the ETV-
CPC, where it may be one and done, versus the shunts that are
two or three or four revisions, that 5 percent grows--or I
should say shrinks down to close to 1 percent. So it is very
cost-effective to go forward.
We have found the partnerships to allow us to go forward
with training when Dr.Warf was there, and it continues on with
Dr. John Mugamba, who is his successor as well. We are eager to
do what is the most effective and efficacious manner going
forward.
It is a difficult thing to ask for a substantial amount of
money at this point in time, but we think, and we believe, and
we feel it is strong evidence that it is as well spent and it
brings value beyond its numbers.
We also concur with those who have come out earlier this
year that have noted the public health emphasis on prevention,
which is absolutely needed, needs to be balanced with those
efforts to create better abilities, better capacity, I should
say, for technology and for surgery that is wanting in areas
because that is a hard price to pay no matter what the economy
is.
Ms. Buerkle. Thank you.
Dr. Warf.
Dr. Warf. Yes, thank you very much. I can actually give a
few comparative numbers that might help put things into
perspective a little bit. This is from a study that is in press
through our Harvard Medical School, Department of Global Health
and Social Medicine, and we have been looking at the cost-
effectiveness of treatment of hydrocephalus in Uganda, partly
based on our data from Uganda and extrapolating that. Depending
on what kind of economic analysis you use, we have reported
that in sub-Saharan Africa, if you use one economic model,
human capital approach, the cost of hydrocephalus is around $1
billion. And if one uses the value of a statistical life
approach, which is that which I think is used by certain
government organizations like the EPA, it is on the order of
tens of billions of dollars, $1.4 billion to $56 billion in
economic burden to sub-Saharan Africa.
The other way that we gauge burden of disease and cost-
effectiveness, as I am sure you know, is the daily adjusted--
disability adjusted life year, the DALY so called, and that is
1 year of healthy life lost. And you can compare the gravity of
different diseases by these kinds of assessments using the
disability adjusted life year. So, for instance, when we look
at treating hydrocephalus and the cost of treatment, it costs
us about $37 to $80 per disability adjusted life year averted
with the initial treatment. That is compared to about $75 per
DALY averted for treating a person with AIDS. That is not
prevention. Prevention is always much more cheaper. You can
prevent AIDS with a dollar for disability adjusted life year.
There have few examples of surgeries done in developing
countries where these kinds of analyses have been done. One is
with trauma surgery. In Nigeria, the published number is $172
per DALY averted; in Haiti, it is $223 per DALY averted for
taking care of a trauma patient. This is verus $58 per DALY for
treating hydrocephalus.
So we do have some hard numbers, as hard as they can get
when working with an economist. And it seems to be there is an
enormous burden, and the cost-benefit ratio we have determined
to be a minimum of 7-1, or the other way around cost-to-
benefit, 1-7, but potentially as high as 1-50 in terms of
economic benefit to the society. So I think those kinds of
things need to be taken into perspective when you are comparing
them with the high-profile diseases.
Ms. Buerkle. Dr. Schiff, did you have anything to add?
Dr. Schiff. I couldn't, no.
Ms. Buerkle. Thank you all very much.
Thank you for being here. I yield back.
Mr. Smith. Ms. Buerkle, thank you.
Dr. Cohick, if I could just ask you, did you run into any
problems with CURE International's effort on hydrocephalus
children in Uganda, for example? Was there a disbelief or lack
of buy-in from the government, or were they pretty open to the
idea when you sited your hospital there?
Mr. Cohick. Well, our hospital began in 2000, and actually,
we were--there was a lot of, as you can imagine, preparation
done before the site was selected, and actually all those
arrangements were made for where we would build and the fund as
well. I guess to answer your question, Dr. Warf was there at
the beginning, and I participated with him as well as the other
leadership in overseeing the hospital.
And our first goal was to be part of the medical community
and the continuum of medical education. We realize that we were
bringing something new and different. I think that became more
evident as discussions were held with district and other
officers of the medical system and others, but if I could allow
a segue to Dr. Warf to probably explain better. His focus on
making sure that--his presence and his desire to be part of the
community, not only in rendering care, but teaching and
education, I think was well received. They might have been a
little skeptical at first because of others who may have
promised similar things, but with his genuine and consistent
manner in staying there and doing what he had promised and to
share his expertise with those of us that were part of the
hospital and hospital system, as well as those in the medical
teaching community were well received. Our efforts certainly
were much more than what were inside of our hospital walls.
Mr. Smith. Let me briefly ask you, Ministries of Health, do
they show profound interest in what you are doing? Do they just
allow to you operate or do they embrace it? When we talk about
the number of physicians, there is clearly a capacity problem.
I think you have said, at least previously in previous
conversations, obviously, the skills that a newer surgeon will
acquire are applicable to a host of other trauma and head
injuries that might occur, again desperately lacking in Africa,
so not only are hydrocephalic children going to get lifesaving
and enhancing treatment, others will benefit as well. I hope
that is appreciated, both in our Government, which has yet to
act, and NGOs that could be philanthropic, NGOs that could be
helpful.
This is a whole area of health care that has been ignored.
You have paved the way. You have done the hard work of proving
the model, particularly in Uganda. Now the bugs are out of it
so to speak, and it seems to be ``replication'' should be the
action word, let's grow this everywhere. But if you could, how
many doctors, the applicability of the skills to other trauma
and problems.
Dr. Warf. So to address your first question about the
Ministry of Health, we started from the beginning in Uganda
with a memorandum of understanding with the Ministry of Health
and worked with them. We worked with them on education and
referral from district and regional hospitals. After about 4
years, it was recognized that we were sort of the national
referral center for hydrocephalus and other neurosurgical
problems in children. And in recognition of that, the
Parliament included us in their budget, which amounted to about
1 month of running costs, but it was quite gratifying, not so
much just from the financial end of it, but the fact they had
embraced us as part of their--acknowledged part of their
medical service.
But we always did, and I was the only non-Ugandan physician
there. We had an all-Ugandan nursing staff, except for some
people who came for training. We hired people out of medical
school and internships to come and work with us and train. And
we fostered their training as we go forward.
So I think that that was--we became a sort of integral part
of that. Other Ministries of Health are interested in what we
are doing. We are currently in some conversations with the
Government of Rwanda, and I met with their Minister of Health
and so forth. So I think Ministers of Health generally do value
what we are doing as part of the bigger picture.
Mr. Smith. Would anybody else like to add anything?
Mr. Payne, do you have any final questions?
Mr. Payne. Only that I certainly command you for the
outstanding work that you all were doing. I do know that you
are in the right country to move forward in medical attention.
As you know, 30, 40, 50 years ago or even longer, Uganda was
known for having an outstanding medical school. I guess the
Makerere Medical School, where doctors or potential doctors
from, in particular East African communities, would go there to
study. I first visited there about 40 years ago and did hear
about the medical school, and other East African countries. I
think Kenya had the school where you wound up to be a good
lawyer and you would go there, but Uganda was the place to go
for good medical attention.
Dr. Warf. That is right.
Mr. Payne. So I am glad that they have continued and at
least tried to give the support. I also have some appreciation
about what Uganda's--of course, it has nothing to do with this
in particular, but they have provided about 8,000 000 troops to
Somalia, where the Ugandan forces are assisting the
transitional Federal Government of Somalia, which is weak. And
without the U.N. support for the Ugandan and Burundian troops,
I think that the al-Qaeda forces of Al Shabaab would probably
have taken over Somalia, which would just wreak havoc on the
whole Horn of Africa. So as a matter of fact, as you may
recall, there was a bombing during the World Cup at a
restaurant in Uganda, and that was primarily because the
Ugandan troops were there in Somalia, much of it supported by
the U.S. through peacekeeping through the U.N., and so it is a
long stretch. But the al-Qaeda people felt that they should do
harm, and about 20 or 30 people were killed because the
Ugandans were supporting the Government of Somalia, which we
support, and therefore directly should be penalized.
So I do appreciate work there in Uganda. Have to work a
little bit with president for life, but you know, we are doing
something. I tell him sometimes--he is a farmer, and I tell
him, why don't you go back to the farm? He said, well, I still
visit the farm on the weekends. I say, why don't you just visit
it all the time?
I really do commend you for the great work you are doing,
thank you.
Mr. Smith. Ms. Buerkle.
Ms. Buerkle. Thank you, Mr. Chairman.
I just have one question, in these developing nations, how
many centers do you think would it take to address this problem
adequately?
Dr. Warf. I would probably have to do a little bit of
arithmetic, but I would say probably two per country, depending
on the size of the country, a place like Congo would need more,
more like half a dozen; smaller countries, maybe one, but it
depends on the size of the country, the population density, and
how bad the infrastructure is for transportation obviously.
But I think that a huge impact would be made by starting
with the goal of one center per country and more in the bigger
countries, like Congo.
Mr. Cohick. Part of our plan is to continue to expand the
training we have where there are treatment centers in place
because of those surgeons that have been trained. As we have
the capacity to allow those that have the desire, willingness
and abilities to become trainers themselves obviously helping
that whole scenario is somewhat akin to what Dr. Warf has said.
Dr. Warf. What we are not envisioning is building more
centers. What we want to do is to come into existing government
hospitals with what you might call a vertical program, and you
train and equip the people that are there who have a commitment
to taking care of these children anyway and just don't have the
tools. And we have done some of that and hope to do more of
that.
Ms. Buerkle. Sure.
Dr. Schiff.
Dr. Schiff. I also might add we also envision a very
similar sustainable way of allowing countries to do the
appropriate discovery of their organisms, surveillance and
institute both better treatment of the sick infants as well as
prevention strategies without having to rely on what is a very
large scale at present effort to do that. And I think that is
very doable. One could attack both the children who need
surgery and simultaneously and parallel with that address the
root causes.
Ms. Buerkle. Thank you. If you did what you are talking
about and you found existing centers and you dropped in the
vertical program, have we talked about how much that costs?
Mr. Cohick. As part of record, we have submitted a plan
that is scalable. The plan itself as it is presented is multi-
year and multi-millions of dollars, but results in over 100
surgeons being trained and going on and over that course of
time close to 27,000 surgeries having been done, but having a
ongoing rate of at least 10,000 and obviously growing more if
it were to continue on its course. That is at least the plan
that is in consideration. Again, it is scalable to become the
right size as needed.
Ms. Buerkle. Thank you.
I just want to echo my colleague, Mr. Payne, in thanking
all of you for your efforts and your hard work and for paving
the way in giving these children a chance, an opportunity to
survive and to live normal lives. So thank you very much.
Thanks for being here today as well.
I yield back.
Mr. Smith. Thank you.
Let me just ask, finally, the ranking of the countries of
Africa, do you have a sense of what countries have the most
compelling need that goes unmet?
Dr. Warf. Yes, sir. The DRC to my knowledge has one
neurosurgeon that I have met who told me he is the only one. I
know of two mission hospitals in Congo that see a stream of
these children and don't have the wherewithal to treat them. So
that is one place.
Mr. Smith. What do they do when a child presents?
Dr. Warf. Well, send them away, say there is nothing to do.
Mr. Smith. So, obviously, we have a huge challenge of
capacity building.
Dr. Warf. Yes, sir.
Mr. Smith. And prioritization within our own Government and
the NGO community, which, again, you have provided
extraordinary leadership on for years, which has gone under-
recognized, I would say, by Congress and by the White House and
by the State Department, no matter who is at the helm.
I think you wanted to say something further.
Mr. Payne. Not, of course, once again, not anything to do
with the hearing here, but I would like to certainly commend
you all for your testimony.
But I was just looking at a Ugandan Little League team that
was qualified for playing in Williamsport, and they defeated a
Saudi Arabian team, and they played in Poland on July 16th,
which is my birthday, kids supposed to be 11 to 13 and they
won. Our State Department just declined to allow them to come
to play in the World Series. It is a real World Series. Of
course, now they bring in Taiwanese kids usually win the
championships when we watch these games. I am going to dash off
a letter to the State Department to ask them why are they
denying these young kids from Uganda. If there is a question
about AIDS, sometimes that becomes an issue, but they won't
disclose what the issues are. And they come from the Reverend
John Foundation, so it can't be any better than that. Whoever
Reverend John is, it sounds good to me.
So I am going to follow up to try to find out why are these
Little Leaguers, I think it would be great to finally have an
African baseball team to go back to their country. Also, I
think it is a great experience for Third World kids to get an
opportunity to visit our country, because sometimes that is the
greatest ambassador for democracy. And when they get back and
see how it is here, then they can be ambassadors in their
country. Once again, thank you, Mr. Chairman, for calling this
important hearing.
Mr. Smith. Thank you very much.
Anything you would like to add before we conclude?
Dr. Warf. Well, I would like to say how much we all
appreciate this. It is the kind of thing that I never thought I
would have a chance to do, so I am very honored and humbled by
the whole thing and just want to thank you.
Dr. Schiff. I would certainly like to echo Dr. Warf's
sentiments.
Mr. Cohick. I add my thanks, thank you so much.
Mr. Smith. Again, you are pathfinders. You are saving lives
each and every day, and we need to expand capacity. I know this
subcommittee stands ready to leave no stone unturned in trying
to help kids suffering from this debilitating but preventable
and treatable condition known as hydrocephalus.
So thank you so much. The hearing is adjourned.
[Whereupon, at 3:33 p.m. The subcommittee was adjourned.]
A P P E N D I X
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