[House Hearing, 112 Congress]
[From the U.S. Government Printing Office]


 
  HYDROCEPHALUS TREATMENT IN UGANDA: LEADING THE WAY TO HELP CHILDREN

=======================================================================

                                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
                                 ------                                

        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

                              ----------                              
                                                                   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

                              ----------                              


                        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:]

    
    
    
    
    
    
                              ----------                              

    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.]
                                     

                                     

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