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67–679PDF 2011

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/

(II)

COMMITTEE ON FOREIGN AFFAIRS 

ILEANA ROS-LEHTINEN, Florida, Chairman 

CHRISTOPHER H. SMITH, New Jersey 

DAN BURTON, Indiana 

ELTON GALLEGLY, California 

DANA ROHRABACHER, California 

DONALD A. MANZULLO, Illinois 

EDWARD R. ROYCE, California 

STEVE CHABOT, Ohio 

RON PAUL, Texas 

MIKE PENCE, Indiana 

JOE WILSON, South Carolina 

CONNIE MACK, Florida 

JEFF FORTENBERRY, Nebraska 

MICHAEL T. MCCAUL, Texas 

TED POE, Texas 

GUS M. BILIRAKIS, Florida 

JEAN SCHMIDT, Ohio 

BILL JOHNSON, Ohio 

DAVID RIVERA, Florida 

MIKE KELLY, Pennsylvania 

TIM GRIFFIN, Arkansas 

TOM MARINO, Pennsylvania 

JEFF DUNCAN, South Carolina 

ANN MARIE BUERKLE, New York 

RENEE ELLMERS, North Carolina 

VACANT 

HOWARD L. BERMAN, California 

GARY L. ACKERMAN, New York 

ENI F.H. FALEOMAVAEGA, American 

Samoa 

DONALD M. PAYNE, New Jersey 

BRAD SHERMAN, California 

ELIOT L. ENGEL, New York 

GREGORY W. MEEKS, New York 

RUSS CARNAHAN, Missouri 

ALBIO SIRES, New Jersey 

GERALD E. CONNOLLY, Virginia 

THEODORE E. DEUTCH, Florida 

DENNIS CARDOZA, California 

BEN CHANDLER, Kentucky 

BRIAN HIGGINS, New York 

ALLYSON SCHWARTZ, Pennsylvania 

CHRISTOPHER S. MURPHY, Connecticut 

FREDERICA WILSON, Florida 

KAREN BASS, California 

WILLIAM KEATING, Massachusetts 

DAVID CICILLINE, Rhode Island 

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 

TIM GRIFFIN, Arkansas 

TOM MARINO, Pennsylvania 

ANN MARIE BUERKLE, New York 

DONALD M. PAYNE, New Jersey 

KAREN BASS, California 

RUSS CARNAHAN, Missouri 

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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

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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 hyVerDate 0ct 09 2002 14:58 Feb 23, 2012 Jkt 000000 PO 00000 Frm 00005 Fmt 6633 Sfmt 6633 F:\WORK\AGH\080211\67679 HFA PsN: SHIRL
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drocephalus 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. 

3

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 

4

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 

5

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. 

6

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 

7

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 11⁄2 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 fiberoptic 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 

8

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 IraqAfghanistan 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. 

12

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 

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ed 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 

22

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 

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ample 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 

24

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. 

25

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 

26

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 costeffective, 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 costeffective 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? 

27

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 

28

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 

29

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, 

30

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 UganVerDate 0ct 09 2002 14:58 Feb 23, 2012 Jkt 000000 PO 00000 Frm 00034 Fmt 6633 Sfmt 6633 F:\WORK\AGH\080211\67679 HFA PsN: SHIRL
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dans 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 

32

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. 

33

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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