Cincinnati Children's 2014 Annual Report: Filling in the Future

filling in the future c i n c i n n at i c h i l d r e n ’ s h o s p i ta l m e d i c a l c e n t e r

www.cincinnatichildrens.org

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a n n u a l r e p o rt 2014

3333 Burnet Avenue • Cincinnati, OH 45229-3026

2 014 A n n u a l R e po r t

12/5/14 9:24 AM

THANKS FOR YOUR INSPIRATION! Our heartfelt thanks to the many children of our community who contributed their beautiful ideas, inspiration and artwork to this annual report: •

Patients at Cincinnati Children’s

•

Children’s for Children daycare center

•

Third-grade art class at our partner school, Rockdale Academy, Cincinnati, OH

•

Fifth-grade Advanced and Creative Talents classes at Mason Intermediate School, Mason, OH

PRODUCTION CREDITS Produced by

Due to space limitations, we were not able to include all the artwork we received. To see all the drawings, go online to:

Department of Marketing and Communications

http://www.pinterest.com/cincychildrens/children-contribute-artto-2014-annual-report/

Jane Garvey, Vice President

Cincinnati Children’s Hospital Medical Center

Writers Mary Silva, Managing Editor Timothy Bonfield Tom O’Neill Sarah Stankorb

Photography Tine Hoffman Jonathan Willis Additional photos from the Cincinnati Children’s archive

Design PROCLAMATION

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12/9/14 12:22 PM

TABLE OF CONTENTS About this Report

PAGE 1

CEO and Board Message

PAGE 3

In Our Community Helping children with severe asthma stay healthy

PAGE 6

TIP program transforms the lives of neglected and abused children

PAGE 10

Across the Country and Around the Globe Projects in Africa transform the care of sickle cell at its source

PAGE 18

Training doctors for a world view

PAGE 28

Accelerating Innovation Our directions in genomics will transform both research and care

PAGE 34

Our Donors

PAGE 44

Our Leadership

PAGE 50

Financials

PAGE 54

AT CINCINNATI CHILDREN’S, WE’RE FILLING IN THE FUTURE. FOR CHILDREN, FOR FAMILIES, FOR MEDICINE, FOR THE WORLD.

“Filling in the future” means going outside the lines of traditional thinking. It means inspiring, imagining, creating and sharing new ideas with the world. That’s what we’re doing at Cincinnati Children’s. In the pages ahead, you’ll read of our breakthrough research and treatments, and the inspired ideas that are helping change the outcome for children here and around the world.

The drawings in this book were created by children inside and outside our hospital community. Many of them have been patients here. These drawings are their visions of what makes them happy and healthy, and how they see the future. We sprinkled them throughout, and left some to be colored in, to remind us that we have the power to change, create, envision and fill in a better future.

If you’re inspired by what you see in these pages, please take a moment to help us fill in the future by donating through our Change the Outcome Campaign. An insert in this book will give you more details. Thank you for your support—and enjoy what lies ahead.

C I NC I NNAT I C H I L D R EN’ S

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Dear Friends, One of the many joys of working in a pediatric medical center is the opportunity to see the world through the eyes of a child.

The children we care for – even those struggling with enormous challenges – have a resilience and an optimism that inspire and motivate us every day.

This year’s report is all about that optimism. In these pages you’ll find artwork created by our children – patients, students in our partner schools, children in our daycare center. All of them have contributed their personal, inventive and colorful perspectives on how they see the world, and the future.

We titled this report “Filling in the Future” because the clinical advances and research discoveries we describe here are helping to solve the problems and complete the picture for countless childhood diseases and conditions. Often, our doctors and scientists begin with nothing more than a fuzzy, bewildering outline of a medical question. But through remarkable teamwork, skill and perseverance, they gradually add the detail and definition that clarifies, illustrates, and often, results in an answer.

This report showcases some of the many ways in which our people are filling in the future. You will read about the exceptional care they provide, of course. But you will also learn that exceptional care is only the beginning – our doctors and scientists take what they learn in caring for patients back to their laboratories to find even better ways.

Whether it is using what they learn here to improve life for children overseas, or developing a genetic test that allows us to predict and prepare for future complications, they continually strive to complete the picture of a better future.

This year, we launched a campaign that will allow us to continue changing the outcome for our patients. It is the largest fundraising effort in Cincinnati Children’s history with a goal of $250 million. We’ve already received major commitments from corporations, foundations and individuals. The dollars raised from the campaign will enable Cincinnati Children’s to fulfill its vision to be the leader in improving child health by focusing on two primary areas:

elping children in our region ecome the healthiest in the nation. eyond pro iding care for disease and injury, we work with community partners to keep children healthy through pre ention and wellness initiati es. Our goal is achie ing optimal health and potential for e ery child. ccelerating disco ery through the work of our esearch Foundation. e know that research dri es healthcare inno ation, which leads to new disco eries and answers to the world s most comple pediatric diseases. Our companion esearch nnual eport details our latest disco eries.

We are grateful for the many ways you show support for Cincinnati Children’s. Your partnership gives us confidence that we’ll be able to fill in the future for more children and families throughout

reater Cincinnati, across the country

and around the globe.

Thomas Cody Chairman Board of Trustees

Michael Fisher President & CEO

In Our Community

FIGHTING ASTHMA New approaches – inside and outside the hospital – help children keep severe asthma in check.

Cincinnati is a city with many great features – beautiful neighborhoods, a reasonable cost of living, stable employment, a world-class symphony, zoo, and more.

Its geography, however, places it at the environmentally

“We’ve been working at this for several years. Most of

tricky confluence of low-lying valleys, smog-trapping

our work has been about, ‘How do we change systems

hills and three heavily traveled interstate highways. That

to deliver the interventions that we already know work?’”

makes it an area ripe for asthma.

says Mona Mansour, MD, MS, director of Primary Care

The region’s overall rate of pediatric asthma is more than twice the national average; in some urban-core neighborhoods, 10 times the national rate. Our doctors and nurses saw daily evidence of this as kids in asthma distress showed up in our Emergency Department.

at Cincinnati Children’s.

ocus on tough cases They assembled a medical team of people from every area in the hospital that works with kids who have asthma. The team focused first on children and families

They took action. And what they’ve done has allowed

who made repeated hospital visits for the condition.

everyone to breathe a little easier.

Hospital staff also took a hard look at themselves and how they cared for those children.

Since 2008, our asthma-related hospital admission rate and emergency department visits for children covered by

“The goal was to get everybody on the same page when

Medicaid have declined more than 30 percent.

treating asthma,” says Carolyn ercsmar, MD, director of

The improvement didn’t come from a breakthrough

way they could improve outcomes for kids with asthma; the

medication or genetic discovery.The city’s pollution levels

list of improvements they have made is long, and growing.

the Asthma Center. The team e amined every possible

did not drop significantly. The shift came by applying the science of quality improvement. Teams of caregivers started making small changes, and implementing them consistently over time.

t left

Using proven treatments consistently has been the key to successfully managing asthma, says Dr. Mona Mansour.

Taking it to the streets Outside the hospital, our researchers have been studying the impact of traffic and air pollution, and pollutants in the home environment, on asthma.

The TRAP study is just one of many explorations into the environmental and socioeconomic factors that contribute to asthma. Our doctors also have linked high rates of emergency room visits for asthma to kids who live in

One environmental factor that’s worsening asthma rates

substandard housing conditions, where exposures to mold,

is diesel exhaust. Diesel emissions produce tiny particles

dust mites and cockroach dander aggravate their health.

of harmful chemicals that can settle deep into the lungs.

Their work is further evidence that improving children’s

“They are small, nasty particles,” says Patrick Ryan, PhD, an

health must include improving the communities in which

environmental epidemiologist in the Division of Biostatistics

they live, says Newman. “Sometimes, the answer isn’t just

and Epidemiology. “They are worse than other pollutants

a prescription, but a system. I cannot write a prescription

because near the source, such as trucks and buses, most

for a new home or clean air.”

(of the particles) are ultra-fine.”

Ryan was one of six researchers who conducted the TrafficRelated Air Pollution (TRAP) study, published last March in The Journal of Pediatrics. Led by Nicholas Newman, DO, MS, and Robert Kahn, MD, in our Division of General and Community Pediatrics, the study included 758 Cincinnati children ages 1 to 16. It examined the effects on asthma

“

rates and hospital readmissions on children exposed to factors such as tobacco smoke and traffic pollution; the study also factored in a child’s socioeconomic situation.

The results showed that although the effects differed among black and white children, the factors contributed significantly to asthma in each group.

Sometimes, the answer isn’t just a prescription, but a system. I cannot write a prescription for a new home or clean air.

”

STEPS TAKEN BY THE ASTHMA IMPROVEMENT TEAM *

A new Asthma Risk Assessment Tool gets a complete picture of a child’s life and

*

After a hospital or ED visit for asthma, children are sent home with a 30-day

*

Children are tested to determine if cigarette smoke (a leading aggravating factor)

the factors that might contribute to his asthma. supply of asthma medications.

is present in the child’s home environment; parents are offered ways to reduce or stop smoking.

Small steps, big impact:

Drs. Carolyn Kercsmar (top) and Maria Britto are using improvement science to change the way we care for kids with asthma.

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*

The Asthma Complex Care Center, an in-hospital day treatment program, helps tough-to-manage cases by compressing months of asthma-related services into a single day.

*

Telehealth technology monitors patient progress between visits.

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OUR COMMUNITY-FOCUSED ASTHMA IMPROVEMENT EFFORTS *

We work with school systems and community groups to improve screening and monitoring of children at high risk for asthma recurrence.

*

We have identified “hot spot” neighborhoods with the highest risk factors for asthma – poverty, poor housing and

*

We have joined with the Cincinnati Health Department on the Collaboration to Lessen Environmental Asthma Risks

*

We collaborate with the Cincinnati Legal Aid Society in the Cincinnati Child Health-Law Partnership, which helps

*

environmental contaminants.

(CLEAR) to support environmental health interventions, including health code enforcement in the community.

families improve substandard housing and negotiate other legal concerns that affect child health.

We are instituting a program to help children stick with their asthma medications even when staying away from home with relatives or other caregivers.

his is based on Leya s drawing of someone who is happy and healthy.

C I NC I NNAT I C H I L D R EN’ S

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PUTTING KIDS BACK TOGETHER AGAIN Cincinnati Children’s joins with community agencies to piece back lives shattered by abuse.

It is early on a summer morning, but the outdoor space is humming in full play mode. Kids zip by on bikes and scooters. Others turn plastic water bottles into squirt guns. Boys scramble to the top of a jungle gym. Girls, braids and ponytails flying, compete to swing the highest. There are lots of happy squeals.

It could be any summer day camp. But the kids are not

Describing these 3-, 4- and 5-year-olds as “lucky” might

just any kids.

seem preposterous, but it is true. They were fortunate

Every child on this playground is a victim of abuse or neglect. Some have been locked in cages or closets.

Others have been beaten, starved or sexually assaulted.

Many come from homes where parents are mentally ill, drug-addicted, or victims of domestic violence. Many live in foster care.

enough to be referred by county children’s services to the TIP (Therapeutic Interagency Preschool) program at Cincinnati Children’s.

It is a step that might very well save their lives.

The TIP program, now in its 25th year, provides educational, developmental, mental health and safety

Despite their exuberance at play, these children face

monitoring services to children from age 3 to 5 who have

enormous emotional, intellectual and physical challenges.

suffered severe abuse and neglect. This year, the program

They might have difficulty talking, problems with motor

will expand to begin with infancy (see page 5).

skills or toileting. They find it hard to trust people. A number suffer from the same post-traumatic stress that plagues veterans of combat. They can be aggressive and abusive, or completely withdrawn.

TIP’s goal is to prepare children to succeed in school, and in life.

For 25 years, the TIP program has helped even the most severely abused children flourish, says executive director Jane Sites.

They might come in as cases of neglect, but then we get the rest of the story.

“What happens to a child when his most significant relationship is disrupted by violence?” asks Jane Sites, EdD, LSW, the program’s executive director. It’s the question she asked when she started with the program as a doctoral student, nearly at its inception. Little was known then about the psychological effects of abuse on children.

“Back then, we thought, ‘Their bodies are fine, they can see, they can hear. They might be angry,’” she says. “We didn’t think about developmental issues or know what reactive detachment disorder, or PTSD, or bipolar looks like when it starts to express itself at age 4 or 5.”

Treating the whole chil But they learned, and that learning became the foundation of a program that cares for the whole child at a most vulnerable and formative stage of life. urrently, TIP cares for

children at a time, with a near constant waiting list.

inety five percent of the children are referred by

amilton ounty Job and amily

Services as “open cases” of abuse or neglect. They are never clear cut, says Sites, and never easy.

T Toys li e this

ooden courtroom set help therapists prepare ids or di cult and potentially

scary experiences.

“They might come in as cases of neglect, but then we get the rest of the story,” she says.

TT linical counselor Thomas ol er observes a child in a therapy session.

Knowing a child’s story Close relationships with area caseworkers ensure that

their work look like play, using every opportunity to

TIP staff know as much as possible about each child,

help children understand and navigate a difficult life.

says program coordinator Ginny Crotte. “So when a child refers to something awful or sad in his life, we are not surprised. We are prepared to respond to what he’s dealing with.”

Everyone is vigilant. Even the program’s bus drivers are taught to look for signs that a child’s safety or well-being is endangered. Coordinators talk with the child’s parents or guardians weekly and visit the child’s home regularly;

The stories are often complicated by an overburdened

parents are encouraged to participate in therapy with

caseload and court system. Decisions on adoptions can

their children.

take up to four years or more, while children remain with unstable parents or bounce from one foster home to

Setting the stage for success

another. One of Crotte’s roles is to testify in court on behalf

Most children stay in the TIP program for a full year,

of the children. “The system itself can be traumatizing,”

although they can continue if they need more time. The

she says. “We try to advocate for what’s best for the kids.”

success rate, even for the most severely traumatized

Helping children through this is a remarkable staff of

children, is remarkable.

social workers, psychiatrists, speech therapists, occupational

“Our data show that children who participate in TIP for

therapists and physical therapists from Cincinnati Children’s,

one year — even those who begin the program as the

and teachers from Hamilton County Head Start. There

most at-risk — make the most developmental progress of

is close collaboration with caseworkers from Hamilton

any preschoolers in Hamilton County Head Start,” Sites

County Children’s Services.

says. “They hold their own with age level peers when

Work that looks like play

they start school.”

Much of the therapy provided by the staff is invisible to the untrained eye. Clinical and mental health services are deftly woven into TIP’s daily activities. Therapists make

Clinical counselor Francoise Pierredon describes her work with the children as “therapy that takes the form of play. It helps the children express feelings they don’t have words for.”

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A TIP ‘GRADUATE’ MAKES A HAPPY LANDING Little Logan Beal had no idea as he bounced from one

“His previous foster mom had him on the porch with an

foster home to another that he was headed for a safe

overnight bag. We walked up, she introduced us, he took

landing. Since being removed from his biological mother at

my hand and we walked to the car. That was it,” Sarah says.

the age of 3, Logan was heading into his fourth placement

The plan was to have an overnight, get-acquainted visit.

in 16 months. Then he landed with Sarah and Ben Beal.

Sarah was to return Logan to the TIP program the next day.

The Beals were well suited to take on a foster child.

That was when she first learned about TIP, which turned out

Sarah was completing her fellowship training at Cincinnati

to be a lifeline.

Children’s and had a PhD in developmental psychology;

“The counselors and staff at TIP knew Logan’s history,” she

Ben, who works in construction, was the one who suggested they become certified foster parents.

had about how to help him.”

But Logan would challenge even the best-equipped family.

He came with a long list of behavior problems resulting from neglect and abuse – some of it allegedly linked to the foster care system itself. He’d been kicked out of several day care and preschool programs for angry and aggressive outbursts. A caseworker referred him to the TIP program as a last resort.

When the Beals first met Logan, they knew little about his background.

PAG E 14

recalls. “They provided us with insights we never could have Over the following months, the TIP staff helped the Beals piece together the puzzle of Logan’s life – everything from what caused his furious temper tantrums to what he liked to eat.

“Without TIP, it would have been really difficult to make sure he was comfortable in his new environment and to develop our relationship,” Sarah says.

Sarah and Ben adopted Logan last year.

C I NC I NNAT I C H I L D R EN’ S

LINDNER FAMILY GENEROSITY ALLOWS PROGRAM EXPANSION

W

Thanks to the generosity of the Carl H. and Edyth B. Lindner Foundation, the TIP program has expanded its services to children from birth to age 3. These new services, which began in September 2014, combine home visits with sessions at the TIP preschool and will serve 12 additional children each year.

— ARL

LINDNER III

“This program really touched our hearts,” says Carl H. Lindner, III. “To support Cincinnati Children’s efforts to reach more children who are abused and who will benefit from the preschool program was something we were eager to get behind. Investing in these types of early intervention initiatives will change the trajectory of these kids’ lives. What better investment could one make than in improving the life of a child?”

A This is based on Ananya’s drawing of kids her age having fun.

C I NC I NNAT I C H I L D R EN’ S

PAG E 15

Across the Country and Around the Globe

Program takes expertise in sickle cell treatment to Uganda, where it is sorely needed

It is all part of The Ugandan Sickle Surveillance Study

are, director of the

ivision of Hematology at

(US3), a cooperative endeavor between Cincinnati

Cincinnati Children’s, has been researching sickle

Children’s and the Ugandan Ministry of Health. It started

cell disease for 30 years.

ut his efforts had focused

in February 2014 as a way to identify sickle cell in one

on children in the United States

of the areas of the world most affected by the disease,

worthwhile effort, but not nearly enough. It’s not

and least equipped to handle it.

a tremendously

addressing the global burden of the disease, he says.

nly 1 percent of the sickle cell

patients in the world are born in orth

Sub Saharan frica is ground ero for sickle cell, says ussell

are, M ,

merica.

It took several trips to

h . It’s where the disease

frica for him

to reali e how little was being done

originated, where the gene

in a place where the incidence of

mutation rst occurred, and

the disease was so great.

where most of the patients are.

Program manager Arielle Hernandez and lab manager Thad Howard examine test results from Ugandan patients.

C I NC I NNAT I C H I L D R EN’ S

PAG E 19

Charles Kiyaga (left), with Dr. Russell Ware, oversees the US3 study in Uganda. The program was designed to be run by the Ugandans; they process some 2,000 tests each week.

Ware did some digging, and learned about the Early Infant

same cards to test for sickle cell we could get an idea of the burden

Diagnosis (EID) program, begun in Uganda in 2006 by

and distribution of disease across the country.”

the United Nations to combat high rates of HIV infection

He and his team worked with Ugandan Ministry of Health officials

in babies. The program established a national network

and staff of Makarere University in Kampala to make it happen.

that collects and tests 100,000 blood samples each year

The result is the US3 study.

from infants born to HIV-infected mothers. Blood spots from standard heel sticks are collected on postcards, then

Of the estimated 400,000 babies born in the world each year with

transported from around the country for testing at the Central

sickle cell disease, 300,000 of those births occur in sub-Saharan

Public Health Laboratories in the nation’s capital, Kampala.

Africa. There are African countries with higher rates of the disease, but Ware chose Uganda because it was politically stable, safe,

After analysis for HIV, the samples were thrown away. Ware

and Ugandan officials had a growing awareness of sickle cell’s

wondered: why not re-purpose them? “By simply using those

The Reali ing

ffectiveness

devastating effects.

cross Continents with

ydro yurea (R

C ) Study hopes to

bring a proven, low cost treatment to a continent in desperate need of better outcomes for children with sickle cell disease. dentifying children with sickle cell and providing them with routine vaccinations and penicillin helps prevent much of the mortality of sickle cell disease.

ut it does not change the course

of the disease or prevent its painful, crippling complications. Currently the only medicine that spares children those side effects is hydro yurea.

Russell Ware,

D, has researched the bene ts of hydro yurea for several decades. The drug

boosts production of fetal hemoglobin, which protects blood cells from sickling. Typically, babies stop producing fetal hemoglobin during the rst year of life.

Ware and atrick

c ann,

of hydro yurea in three

D, are leading the R

C study to evaluate the safety and ef cacy

frican nations the Congo, Kenya and

ngola. The four year study

will enroll 00 children.

The drug has proven safe even for very young children

in fact, the

will revise treatment

guidelines this year to include hydro yurea as standard treatment for children with sickle cell disease. ur goal is to prove that hydro yurea is possible and safe in

frica, says

c ann, so we

can help the World ealth rgani ation and the ministries of health develop a strategy for its use.

Dr. atrick

PAG E 20

c ann

C I NC I NNAT I C H I L D R EN’ S

Creating a sustainable model Working with staff of the Ugandan Health Ministry, in under two weeks, Ware’s team converted a small storage area in the central lab in Kampala into a fully operational sickle cell testing laboratory. Cincinnati Children’s donated the equipment and testing supplies; Ware’s team helped set things up and conducted the training.

Ware says the engagement of the Ugandans is crucial to the study’s goal of turning the tide of sickle cell disease.

“When you think about studies overseas, the idea of teaching and sustainability is important. They have learned to do this quickly and well.”

lanning a ead After just

ve months, the US3 study has pinpointed

“We started from scratch,” says Arielle Hernandez, the

four areas in Uganda where the incidence of sickle cell

US3 project coordinator. “They didn’t have a sickle cell

is highest. Ware and his team are working on ne t steps

lab - no capacity, no equipment or training whatsoever.

for when the surveillance study wraps up ne t ebruary.

It was just a storage closet.”

“We have already planned with the Health Ministry to

Hernandez and Thad Howard, Ware’s research lab

begin a new project to screen all infants born in those

manager, worked with the Ministry of Health staff to

four districts,” he says.

write a study protocol. They trained four Ugandans to perform the tests and run the lab.

Those technicians now process about 2,000 blood samples each week; the goal is 75,000 to 100,000 within a year. Weekly Skype meetings allow staff on both sides of the world to talk through questions and concerns. Test results are reviewed each week by a team in Uganda as well as by Howard, who says the skill and hard work demonstrated by the Ugandan technicians has been remarkable. “Nobody else is doing this in the world,” he says. “They are quickly becoming the leader in screening.”

t doesn t ta e e ensi e medi ines to ma e si le ell better

The Cincinnati Children’s sickle cell team trained Ugandan Health Ministry staff to run the sickle cell lab in Kampala.

Treatment is crucial – and affordable Once children are identified as having sickle cell, getting proper treatment to them is the essential next step, says Patrick McGann, MD, a Cincinnati Children’s hematologist who is working with Ware on another study in Africa of treatment for sickle cell. (See page 20).

The two hope to use US3 data to convince government officials and funding organizations of the scope of the sickle cell problem, and the difference treatment can make.

“It doesn’t take expensive medicines to make sickle cell better,” says McGann. “What these babies need are routine vaccinations and prophylactic penicillin. Those two steps will prevent a huge number of deaths. Without that, it is estimated that 50 to 80 percent of the babies will die in the first couple years of life.”

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C I NC I NNAT I C H I L D R EN’ S

12/10/14 8:59 AM

STATISTI S E EA A STA NT AST IN T E I A T SI E E DISEASE UGANDA 1.6 million

babies born each year

20,000

babies born each year with sic le cell

50 to 80 percent die before age

No newborn screening No national treatment program

UNITED STATES 4.1 million

babies born each year

3,000

babies born each year with sic le cell

95 to 99 percent survive to adulthood

Universal newborn screening All affected babies referred to sic le cell treatment programs

U

EDI A S ANS T E G

EA E

Cincinnati Children’s conducts a variety of medical studies with children around the world. Countries where we have a presence include Australia, Bangladesh, Brazil, China, France, Greece, Honduras, India, Israel, Mexico, Nepal, the Netherlands, Norway, Spain, South Africa, the United Arab Emirates and the United Kingdom.

C I NC I NNAT I C H I L D R EN’ S

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TRANSFORMING LIVES HERE AT HOME Bullucks, now 29 and an attorney in Cincinnati. He has needed hospital care only twice in the past several years.

Hydroxyurea is not a new drug, but research demonstrating its value and minimal risks for younger children is relatively recent. The latest recommendations support administering the drug to children as young as 9 months if they have three or more pain crises per year from sickle cell disease.

Treatment with hydroxyurea allows Shanoah Moore, 12, to pursue cheerleading and gymnastics.

Raymond Bullucks was diagnosed with sickle cell disease as a toddler. His early childhood was an odyssey of medical encounters, including frequent blood transfusions, surgery to remove his gall bladder and pain crises severe enough to require two or three hospital admissions per year.

Then at age 15, his doctors prescribed hydroxyurea, a daily medication that increases the body’s production of fetal hemoglobin. The treatment reduces sickling of red blood cells, which in turn reduces pain.

“When I was in grade school, I could get headaches from exercising too much in gym class or just being outside too long in the heat,” he says. “But in high school, I was able to get all the way through marching band camp in the middle of August without any crises.”

Sonya Moore has seen how hydroxyurea improved life for her 12-year-old daughter, Shanoah, who was diagnosed with sickle cell disease shortly after birth. “She was in the hospital about three or four times a year and on antibiotics and pain medications around the clock for two or three days at a time,” Sonya says.

At age 5, after another hospital stay to control a pain crisis, Shanoah started taking hydroxyurea. “It has been a godsend for her,” Sonya says. “Day to day, you would not know she has sickle cell. She’s bubbly, bright and active.

She’s a cheerleader. She’s taking gymnastics.”

Since taking hydroxyurea, Shanoah has had far fewer hospitalizations. She has needed only five blood transfusions in her lifetime; many children her age with sickle cell require monthly blood transfusions. The key, Sonya says, is taking the medicine consistently. “Once your child starts feeling better, she may not want to take

Although hydroxyurea treatments are far from a cure, the

it,” she says. “But she needs to keep on taking it so she

medication has kept his pain in control for years, says

can remain feeling better.”

NATIONAL STUDY PROVES HYDROXYUREA’S BENEFIT Hydroxyurea has been so successful in alleviating the painful and often life-threatening symptoms of sickle cell anemia that recently the NIH ended a national study one year early.

The study, led by Cincinnati Children’s investigators, examined the use of hydroxyurea in children with sickle cell who were at risk for stroke. Children in the study who received hydroxyurea did as well as those on chronic transfusions, with no harmful side effects. Russell Ware, MD, and Patrick McGann, MD, hope that this success will encourage more doctors to prescribe the drug’s use

Raymond Bullucks, 29, credits hydroxyurea for a relatively pain-free life with sickle cell disease.

in pediatric patients.

PAGE 24

C I NC I NNAT I C H I L D R EN’ S

Shanoah, age 12 This is based on Shanoah’s drawing of a world without sickle cell.

C I NC I NNAT I C H I L D R EN’ S

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Kaylee, age 10 This is based on Kaylee’s drawing of what future scientists might look like.

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C I NC I NNAT I C H I L D R EN’ S

AKIN FOUNDATION FUELS DISCOVERY The breakthroughs featured in this report are resulting in

“ f we had started out at Cincinnati Children’s, our outcome

safer, more effective treatments today – and making many

probably would have been different,” Justin says. “That’s

illnesses a thing of the past.

why people are coming here from around the world.”

Supporting the research efforts of our scientists is one of

n addition to the Akins’ personal investment, Justin has

the best ways families can say “thank you” for the care

spearheaded a

provided to their children at Cincinnati Children’s.

funds for the HLH Center. This year, Justin and his fellow

No one understands this better than Justin and Kristin

riders delivered a

mile bike ride, over seven days, to raise ,

check to Cincinnati Children’s.

Akin. The Akins lost their sons, Matthew and Andrew, to

“Staying active with Cincinnati Children’s inspires me,”

hemophagocytic lymphohistiocytosis (HLH) — a rare immune

Justin shares. “There is no better place in the world – they

system disorder that is fatal if not found and treated quickly.

have the best team of experts who are passionate about

The Akins learned too late about the breakthrough care for HLH at Cincinnati Children’s. But in their drive to spare

curing this disease. The cure will be found here, and ’ll always help them any way can.”

other parents the pain of their experience, the Akins established a foundation to raise money for the HLH Center of Excellence at Cincinnati Children’s – the most experienced HLH research and care facility in the world.

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GLOBAL EXPOSURE Our Global Health Residency Track trains doctors to care for children where resources are scarce, both overseas and at home

ChildrensHospital_AnnualReport_Insides_FA2.indd 31

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f t l ee l

e t t e

l t

t t e

e

l

e

l fl e

e

e e t e t e t l ee e te te e l t t e

e e t l l t t et e

e e e

In the muggy heat of the rainy season, oxygen tubing

“It’s an intense situation,” says Schubert. “In Malawi,

was cleaned and left out to dry for reuse. And in the

when a child dies it’s as much a failure of the whole

pediatric zone where Hoehn would spend most of her

public health system there as it is the amount of care

time, more than 400 sick children – some of them

we can provide them.”

dying – had been squeezed into 300 beds.

This experience of practicing cross-cultural medicine

“There were patients and families lining the hallways,

to care for underserved populations is one had by

moms sitting on the floor trying to feed their kids,”

about 20 Cincinnati Children’s residents each year, in

Hoehn remembers. There were only four pediatric-

six established sites with strong connections to our

trained physicians on staff (it was 2013) for the sad

faculty and options to rotate through seven other

abundance of children with malaria, malnutrition,

vetted sites.

sepsis, and HIV.

Residents might rotate in locations like the Hospital

It was a terrifying first day. Hoehn wanted to be helpful,

Infantil Robert Reid Cabral in the Dominican Republic,

but was worried she wouldn’t be able to handle it. She

where Cincinnati Children’s graduate Rafael Mena, MD,

tried to save the lives of children in a hospital that had

directs the newborn and hospitalist service. Or they

extremely limited resources. Children died, too sick

might travel to Albert Sabin Hospital in Fortaleza,

to be saved. Each night, Hoehn and another resident

Brazil, where Cincinnati Children’s gastroenterologist

debriefed with Chuck Schubert, MD, who directs the

Sean Moore, MD, spends half the year doing research.

Global Health Residency Track for Cincinnati Children’s.

They often did this over dinner with Schubert and his wife, Julie, in the house they all shared in Lilongwe.

At left:

Dr. Erin Hoehn, now a fellow in emergency medicine, with Global Health Residency Track director Dr. Chuck Schubert.

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Dr. Chuck Schubert hopes Global Health Residency training will encourage doctors to devote their careers to serving underserved populations.

Attracting top students The opportunity to practice medicine in foreign wards

Schubert, who himself got “the global health bug” after

is what attracts top candidates like Hoehn to Cincinnati

a year’s work at a rural mission hospital in Zambia,

Children’s already competitive residency program.

emphasizes to residents that their experience overseas and here in Cincinnati builds skills that transfer to either setting.

“Two of our new residents right now have said one of the big reasons they wanted to come here was our great global

“The great majority of them will end up working in the

health program,” says Schubert.

United States,” says Schubert, “but my not-so-private goal or hope is that they’ll continue to be involved with

Two rotations in Malawi taught Hoehn to “recognize sick.”

underserved populations.” Schubert cites a study by

It’s where Hoehn, now an emergency medicine fellow at

the Robert Graham Center reporting that residents who

Cincinnati Children’s, chose her specialty. “I enjoyed taking

participated in international health tracks were more likely

care of the sicker kids,” she says. She also recognized that

to practice abroad, care for the underserved in the U.S., and

additional training in emergency medicine would better

have a higher percentage of uninsured and non-English-

prepare her for future global health work.

speaking patients in their practices.

Building self-reliance

Support throughout the program

It also made her a better doctor at home. Just as she did

The program begins with a “global health boot camp” for

in Malawi, Hoehn sees children with pneumonia, viral

residents that offers a two–week advocacy course and

syndromes, and influenza. She sees kids severely ill with

another two weeks providing care at the Gallup Indian

sepsis. “A lot of those same disease processes are seen

Medical Center in New Mexico, which serves members

here, except here you have more resources to deal with

of the Navajo Reservation and the Zuni Nation. When in

them, and you’re likely catching them earlier,” she says.

Cincinnati, residents attend monthly educational meetings,

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and a ournal club encourages shared interests in crosscultural matters. esidents must also complete scholarly work to graduate with a global health certificate.

nder the guidance of

ark Steinhoff,

of the Global Health Center and the Global Health lus fellowship, another graduate,

When residents return from their overseas experiences, Global Health faculty at Cincinnati Children’s mentor them through their re-entry. Schubert says it’s not uncommon to hear residents compare the number of

, director

my

ule,

, is

completing a hybrid fellowship in hospital medicine and global health and will work at enwek Hospital in Western enya for almost a year. She hopes to focus on neonatal care.

pediatricians on a single service at Cincinnati Children’s

Hoehn’s future will balance domestic emergency

versus the few in an entire hospital overseas.

medicine and trips to far- ung locales that could use

“It can be difficult to come back,” says Hoehn, “where we have a wealth of doctors and medical professionals and nurses and nutritionists — every resource under the sun” — knowing the needs she left behind.

the expertise of a highly trained and compassionate pediatrician.

s for the hospital she served in

this September it will have

alawi,

pediatricians, she reports

— an increase that still far from meets the need.

A course set for life hey are hard lessons, but ones that also inspire. Global health graduate

isa

to her home city of

youb- odrigue ,

, returned

l aso, exas, and is developing

an immigrant education rotation for residents there.

A

A

For Ronine Zamor, MD, choosing to travel to Haiti for her Global Health Residency experience had special significance. Zamor’s family is from Haiti.

They moved to the U.S. in 1980.

She had spent time there during her undergraduate and medical school years, and wanted to return as a resident “to work in a clinical setting in Haiti, and to learn more about my own culture.”

It was an important factor in her choice of Cincinnati Children’s for her residency.

“I wanted a program that would support my interest in going back to Haiti, and to potentially help me develop something sustainable.”

A third-year resident, Zamor spent a month last year in Haiti and will return again this January. Although she hasn’t yet decided where her career will take her, she imagines it will involve a continued relationship with her home country.

“I might go back for a year or two to immerse myself in the culture, which is so important to practicing medicine,” she says. “Or I would like to have an ongoing partnership with a hospital or clinic there.”

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Accelerating Innovation

FINDING PATTERNS IN THE NOISE How the emerging field of genomics is accelerating our discovery

Forget “plastics.” If Hollywood were to re-make the famous 1967 film, The Graduate, today’s entrepreneur might have a new word of advice for the inexperienced title character: “genomics.”

While genetics describes the study of genes and their

care at faster speeds and lower costs than ever before,”

role in inherited conditions, genomics describes an

says Tracy Glauser, MD, associate director, Cincinnati

exploding field of discovery. It flows from new technology

Children’s Research Foundation. “If we want to continue

that allows scientists to rapidly sequence and analyze

to be the leader in children’s health, we need to

the entire human genome, as well as the genomes of

incorporate genomics into our entire medical approach.”

thousands of other organisms, from bacteria to mice.

When Glauser and colleagues describe the roles genomics

The life-transforming potential of this new science is

can play in biomedical research, they begin with the

immense. The promise of genomics includes a new era

patient — the prime source of data gleaned from the

of precise, personalized medicine and a wave of vastly

tiniest biological samples and the latest electronic medical

improved treatments for many complex disorders.

records. The conversation quickly progresses to the

But the path to those goals could be fraught with potential wrong turns. The challenges involved in translating genomic discoveries into everyday medical care are immense. Yet world-class research institutions like Cincinnati Children’s are tackling those challenges head-on. In fact, accelerating discovery through genomics is one of the key components of the medical center’s

world of biomedical informatics, where the technology to gather and analyze “big data” has exploded. It then moves into the realm of discovery, where scientists use this wealth of data to gain new understandings of human development and disease processes. This in turn leads to new diagnostic tools and improved treatments that will have a far-reaching impact on care.

“Next Era” strategic plan.

“The biggest revolution in medicine in the past 15 to 20 years has been that we have the ability to measure and analyze genetic material and apply it to patient

t left:

A genetic test developed at Cincinnati Children’s found a mutation in Gianna (left) and Pia Schueler that explained – and helped doctors improve – their hearing loss.

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Members of the Division of Biomedical Informatics help colleagues draw insights from massive amounts of data generated by genome-wide analysis. From left: Drs. Nathan Salomonis; Jun Ma; Peter White, division director; and Anil Jegga.

Discovery starts with the patient Raphael Kopan, PhD, director of Developmental Biology,

Now, however, high-throughput gene sequencing technology

breaks the modern history of medical research into two

can capture any person’s entire genome for as little as

eras. The era of molecular biology began in 1953 with

$1,000 and analyze that individual’s entire set of 3 billion

James Watson and Francis Crick describing the double-

nucleotides in a matter of days.

helix structure of DNA. Then in 2003, scientists published the first full sequence of the human genome, a 13-year, $3 billion project that opened the door to a new era of genomics, proteomics, metabolomics and other “omics.”

The ability to conduct studies at the genomic level has transformed the research enterprise.

“For the first time in my history as a researcher, we do not need to begin the discovery process with animal models.

We can start with the patient and run experiments that look directly at the patient’s own genomic information,” Kopan says.

“In the not-so-distant past, we made genetic discoveries

Big data keeps getting bigger

by taking an animal amenable to genetic manipulation,

Since the first human, mouse and yeast genomes were

screening that animal for mutations that we could detect,

documented, the research world has published whole-

and analyzing what those mutations did. Then we would

genome data for more than 1,000 organisms. Research

search the human genome to try to find an equivalent

centers have amassed immense repositories of genetic

mutation. Only then could we determine if there was

profiles of people with all manner of diseases, infections

something we could do to offer some relief,” Kopan says.

and inherited conditions. Huge libraries store details on

“We have cured many mice in this process, but not so

how thousands of medications and promising chemical

many humans.”

compounds affect human and animal genomes.

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The chase is on to find crucial gene-drug-disease

“The exploration is just beginning,” Harley says.

associations that could lead to improved, targeted

“There’s no medical problem outside the reach of these

medications. Experts in the fast-growing field of

new approaches. Genomic research has implications

biomedical informatics are developing the powerful

for asthma, sickle cell disease, diabetes, depression,

hardware and software needed to process, store and

seizures, and more. There will be new drugs that drop

retrieve so much data. Even the scientists themselves

out of this effort that will give physicians the capacity

wonder how any human mind can comprehend it all.

to encourage or discourage inflammatory response,

“If you’re considering the entire genome, it’s not possible to analyze all this through a reductionist approach,” says

or control how fat is metabolized, or even control the process of atherosclerosis.”

Peter White, PhD, director of Biomedical Informatics.

The challenge: finding those valuable needles in a

“Now we are asked to look at discovery from an entire-

haystack 39,000 miles high.

disease perspective, over lots of potential patients, and to consider the entire genome at once. Our goal is to develop unified processes for generating and analyzing genomic information that is seamless across the enterprise.”

“We’re working in terabytes when most people cannot understand what a gigabyte is. And soon we’ll be working in petabytes,” Harley says.

A new world of discovery John Harley, MD, PhD, director of the Center for Autoimmune Genomics and Etiology (CAGE), compares the potential of genomics to Columbus discovering the New World.

“

We’re working in terabytes when most people cannot understand what a gigabyte is. And soon we’ll be working in petabytes.

”

HOW BIG IS A PETABYTE? * * * *

One petabyte is equivalent to 1,000 terabytes or 1 million gigabytes. That’s really big.

A single petabyte could hold 500 billion pages of standard printed text.

A 1 million-page stack of paper would stand about 416 feet high. That means a petabyte-sized stack of paper would stand more than 208,000,000 feet high.

That’s about 39,000 miles. The Earth’s circumference is 24,860 miles around.

Dr. John Harley

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12/9/14 12:35 PM

Dr. Raphael Kopan

Dr. John Greinwald

“It requires collaborations of large groups of people with

Greinwald’s team sees 200 to 250 children every year who

enormous amounts of expertise to extract the secrets hidden

travel here from around the country. Cincinnati Children’s

in all that data,” Harley says. “This isn’t something that can

is one of the few centers nationwide that performs and

be done by a lone entrepreneur working in a garage.”

interprets genetic tests.

Building on the opportunities presented by genomics will

Thanks to nationally mandated hearing screening at birth,

require research and educational institutions like Cincinnati

most parents in this country are informed early if their child

Children’s to train a generation of young investigators in a

has hearing loss. But the OtoSeq test provides details that

new form of scientific literacy.

the mandated screen cannot.

“Our species’ gift and curse is our ability to see patterns in

“The test allows interventions that can be transformative,”

noise,” Kopan says. “Everyone who has ever seen a shape

Greinwald says. “At 1 month of age, we can tell families

in a cloud can relate to this. Clouds are nothing more than

what caused the hearing loss, its likelihood of progression,

random patterns of water vapor. But our brains see animals,

and if it is associated with other medical problems. We can

faces and all sorts of other shapes within them. This is why

give them valuable information from the start, so they can

it is so important to learn how to use big data appropriately.

get on with treatment.”

Otherwise, we can waste a lot of time and effort chasing patterns that are just water vapor.”

And treatment is crucial in helping a child develop speech and language skills.

Genomics already showing impact on care

“Some children will do just fine with hearing aids,” Greinwald

Despite the challenges, our doctors have already shown

says.“But genetic testing can predict a more severe phenotype

how genomic research is improving care for children.

in which hearing aids are not the long-term solution and

The OtoSeq hearing loss test was developed based on

parents should think about cochlear implants.”

research led by John Greinwald, Jr., MD, an otolaryngologist at Cincinnati Children’s. The test uses rapid “nextgen” sequencing to detect genetic mutations that cause sensorineural hearing loss – a permanent, genetically linked hearing loss that affects 1 in 700 children.

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CENTER FOR PEDIATRIC GENOMICS Cincinnati Children’s plans to launch a Center for Pediatric Genomics in February 2015. The center will serve as an incubator for genomics projects within the medical center that show strong scientific merit and likelihood of success.

White and Harley lead a 15-member steering committee that will help develop the center. They plan to select several pilot projects in the center’s first funding cycle.

A Thousands of children who need neuro-psychiatric

Now, Cincinnati Children’s is a member of the national

medications already have benefited from another type

Clinical Pharmacogenetics Implementation Consortium

of genetic test.

(CPIC), which brings together several leading medical centers to find gene-drug associations for many more conditions.

The spin-off company Assurex, based in the Cincinnati suburb of Mason, Ohio, has commercialized a test

Similar technologies are helping cancer patients at

panel that was developed by researchers at Cincinnati

Cincinnati Children’s receive customized doses of

Children’s in collaboration with the Mayo Clinic. Three of

chemotherapy and helping doctors prescribe carefully

the co-inventors are still based at Cincinnati Children’s:

controlled doses of immunosuppressants to organ

Glauser, Sander Vinks, PharmD, PhD, and John Pestian,

transplant recipients.

PhD, MBA.

“This is essentially, the ‘Next Era’ in action,” Vinks says.

Since it was developed in 2004, more than 15,000

“This is a project that has made it all the way around the

patients at Cincinnati Children’s alone have received the

wheel, starting with a problem experienced by patients,

neuro-psychiatric test panel. The test identifies children

discovering how genetics plays a role in that problem,

with genetic variants that make them normal, rapid or

then developing a solution that improves outcomes.”

slow metabolizers of this class of medications. It then recommends how physicians can adjust medication doses to achieve maximum benefit.

F

rs. Tracy Glauser

ohn Pestian and ander inks developed a genomic drug screen

that led to a spin-off company and national collaborations.

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Gene testing helped the Schueler family give their daughters every advantage in facing Usher syndrome.

Their son does not have the genetic mutation.

TEST ALLOWS FAMILIES TO PREPARE Gianna Schueler just celebrated her “hearing birthday.” It’s

By that time, Greinwald had developed the OtoSeq

been five years since the busy second-grader’s cochlear

microarray test. The test uses rapid gene sequencing to

implants were activated. A lively, active 7-year-old, she

test for mutations that cause permanent hearing loss. The

loves dolls and just took up horseback riding.

Schuelers had both Gianna and Pia tested; both had a

When Gianna was born, she had trouble with head control

mutation associated with Usher syndrome.

and nursing, and didn’t seem soothed by her mom, Anne’s,

The diagnosis explained the girls’ deafness, their balance

voice. Because Gianna was born at home, she didn’t have

issues and the twisting Anne had seen in their necks.

the customary hospital hearing exam. It took until after

Children with Usher syndrome can also develop blindness.

her first birthday—with physical therapy and neurologists’ appointments in between—for Gianna to be diagnosed with profound hearing loss.

Knowing Pia’s diagnosis at an early age enabled the family to focus on developing her verbal skills. She received cochlear implants by 10 months of age and now attends

Having an answer was a huge relief to Anne and her husband. “Honestly, at that point, I wasn’t really sad,” says Anne, “because I had spent so much time trying to figure out what was going on with her. We felt like, she’s not sick… we can do something about this.”

Ohio Valley Voices’ toddler program.

Although the OtoSeq test, and the diagnosis it made possible, wasn’t available as early in Gianna’s life, the Schuelers feel she is well prepared to handle whatever the future holds. In addition to cochlear implants at

So at 2 years of age, Gianna received bilateral cochlear

age 2, Gianna had verbal training that prepared her for

implants from John Greinwald, MD.

mainstreaming in school; she now takes horseback riding

Then two years ago, Anne’s third child, Pia, was born. “I

lessons to help with balance.

could tell that first day that she was going to fail her hearing

“I wish we would have known sooner with Gianna,” Anne

test,” Anne recalls.

says, “but fortunately, we happened to make the right decisions.”

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Naya, age 10 Naya’s drawing illustrates what the future will be like at Children’s.

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12/5/14 2:13 PM

NEW FRONTIERS INITIATIVE Neil Armstrong was a great patriot and pioneer, a humble leader who brought us to new frontiers, and a significant contributor to the history of scientific discovery. To honor Commander Armstrong’s memory and legacy, and to spur the next generation of innovation, Cincinnati Children’s and the Armstrong family have created the Neil Armstrong New Frontiers Initiative.

The New Frontiers Initiative is a catalyst for the next generation of discovery at Cincinnati Children’s, funding the pursuit of the next new scientific frontier. The fund supports breakthrough strategic initiatives most likely to quickly improve outcomes and quality of life for sick and injured children everywhere.

Cincinnati Children’s has a long history of pioneering discoveries and innovation that has helped us change the outcome for kids here in Cincinnati, across the country and around the world. The New Frontiers Initiative helps ensure that Cincinnati Children’s can keep the next generation of young pioneers healthy and reaching for the stars.

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C I NC I NNAT I C H I L D R EN’ S

Veena, age 10 This is based on Veena’s drawing of what the future will look like.

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RECOGNIZING OUR DONORS As a nonprofit hospital and research center, Cincinnati Children’s relies on the support of generous friends and partners like you, to improve the health of children, in our community and beyond.

When you give to Cincinnati Children’s, you are investing in the future of child health. You are investing in the future of children.

We are profoundly grateful to those who have chosen to partner with Cincinnati Children’s. You have a tremendous impact on our work.

Together, we save lives and advance discovery. Together, we provide hope.

Together, we Change the Outcome.

Gifts to Cincinnati Children’s Fiscal Year 2014: July 1, 2013 – June 30, 2014

Total of

million million million million

million raised YO

G

a ien

are an

u

r

esearc reas

rea es uni y

ee

u reac an

re en i n

O TY G OW 3

0

34

0

33

40

32

30

31

20

30

10

2

0

FY11

FY10

O

CO T

FY12

T

FY13

FY14

2

O

C I NC I NNAT I C H I L D R EN’ S

FY10

FY11

O G T

FY12

FY13

FY14

T O

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Gifts of every size make a difference Please visit www.cincinnatichildrens.org/campaign to view our entire Honor Roll of generous donors.

As of Fiscal Year 2014:

1883 Society

July 1, 2013 – June 30, 2014

These generous donors have made gifts totaling $5 million or more.

Lifetime Giving Societies

Bill and Melinda Gates Foundation Boomer Esiason Foundation

The generous supporters who make up the 1883 Society and the Sabin Society have made gifts to Cincinnati Children's totaling $1 million or more. Their partnerships are vital to our success - and play an important role in our recognition as a leader in pediatric health. Countless lives have been saved due to the passion of donors who support world-class research and safe, reliable, family-centered care.

Mrs. Lela C. Brown Children's Miracle Network Cincinnati Children's Employees Convalescent Hospital for Children The Cooperative Society Fifth Third Bank and Fifth Third Foundation The Greater Cincinnati Foundation Junior Co-Operative Society Kindervelt of Cincinnati Children's Hospital Medical Center March of Dimes Foundation William Cooper Procter John J. & Mary R. Schiff Foundation Estate of Ralph J. Stolle Toyota

Sabin Society

Western & Southern Open

Dr. and Mrs. Ira A. Abrahamson, Jr.

William Belmont Backs and Louise Nuxoll-Backs Trust

Ms. Jean L. Abrahamson

Bethesda Inc.

American Heart Association, Inc.

Patricia Heekin Briggs

Anonymous (1 2 )

Buckeye Foundation

Neil and Carol Armstrong

Denise and Dave Bunning

Association of Volunteers

Mr. & Mrs. Ralph R. Burchenal

Estate of Ruth A. Atlas

Estate of Dorothy S. Campbell

Autism Speaks

CancerFree KIDS Pediatric Cancer Research

Dr. & Mrs. Richard Azizkhan

Shannon and Lee Carter

These generous donors have made gifts totaling $1 million – $4.99 million.

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Children’s Heart Assocation of Cincinnati

HB, EW and FR Luther Foundation

Children’s Tumor Foundation

Ruth Lyons Children’s Fund

Dr. Douglas F. Clapp

Dr. Lester W. Martin

Mary Ellen and Tom Cody

Mr. and Mrs. Manuel D. Mayerson

Mr. Reed L. Coen

Robert and Sally McLaurin

Robin T. Cotton and Cynthia Fitton

Dr. and Mrs. Nelson Melampy

Dr. and Mrs. Alvin H. Crawford

The Oxley Foundation

Crohn’s & Colitis Foundation of America

Joe and Susan Pichler

CURED

Mr. and Mrs. Geoffrey Place

Cystic Fibrosis Foundation (National Headquarters)

The Procter & Gamble Company

Charles H. Dater Foundation

Estate of Lova D. Riekert

Deloitte

Estate of Dr. George Rieveschl, Jr.

Doris Duke Charitable Foundation

Robert Wood Johnson Foundation

Mr. & Mrs. James M. Ewell

Dr. Jack Rubinstein Foundation for Developmental Disorders

Henry and Elaine Fischer

The Robert C. and Adele R. Schiff Family Foundation

Michael and Suzette Fisher

Estate of Leroy E. Schilling

The Fitch Family

Roger P. and Nancy L. Schlemmer

The Flaherty Family

Charlotte R. Schmidlapp Fund, Fifth Third Bank, Trustee

Fondation Leducq

Jacob G. Schmidlapp Trusts, Fifth Third Bank, Trustee

Food Allergy Initiative

Marge & Charles J. Schott Foundation

Robert B. Gardner Trust

Dr. and Mrs. Curtis A. Sheldon

General Electric Evendale Employee’s Community Service Fund

Michael M. Shoemaker Trust

The Gerber Foundation

Estate of Louis M. Sloan

Emma Margaret Goldman Trust

Hannah Jo Smith Research for Leukemia Foundation

Estate of Irving Goldman

Speedway LLC

The Scott and Carolyn Hamlin Family

St. Baldrick’s Foundation

Marjory J. Johnson Trust

Mr. & Mrs. Joseph Stern, Jr.

Ms. Lyn M. Jones

The Sunshine Charitable Foundation

Josh Cares

Mrs. Mary Louise Tecklenburg

Estates of Molly and Sam Kaplan

Mr. G. Richard Thomas

Ida C. Kayser Trust

TriHealth Corporate Offices

Robert T. Keeler Foundation

Walmart/Sam’s Club Associates and Customers

Dorothy M. M. Kersten Trust

Louise A. Williams Trust

Kohl’s Cares

Louise S. Wilshire Trust

The Leukemia & Lymphoma Society-Southern Ohio

Mike and Amy Zicarelli

Carl and Edyth Lindner Family

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FY14 Annual Report Honor Roll Here we recognize the patients, families, staff, friends, companies and community organizations who have made gifts of $50,000 or more in fiscal year 2014. Thank you for your support of Cincinnati Children’s.

Circle of Champions ($100,000+) Individuals and Family Foundations The Matthew and Andrew Akin Foundation Anonymous (5) Mrs. Carol H. Armstrong The John A. and Marlene L. Boll Foundation Mrs. Lela C. Brown Buckeye Foundation Denise and Dave Bunning Robert Rogan Burchenal Foundation Mary Ellen and Tom Cody CURED Ms. Kathleen C. Daly DSM Downs LLC in honor of G. Richard Thomas The Farmer Family Foundation Mr. and Mrs. Richard T. Farmer Mr. and Mrs. Scott D. Farmer Henry and Elaine Fischer Michael and Suzette Fisher The Flaherty Family Charles R. Gardner Trust Mr. and Mrs. Park N. Gilmore

The Greater Cincinnati Foundation Mr. and Mrs. Richard L. Hildbold Jewish Federation of Cincinnati Mr. and Mrs. Richard H. Kantor The Kulkarni Family Carl and Edyth Lindner Family Mr. Randall L. Middleton The Ponzio Family Foundation Mr. and Mrs. Craig A. Ponzio Jane and Rob Portman Ms. Suzanne S. Reid Mr. and Mrs. David L. Scheper John J. & Mary R. Schiff Foundation Mr. Thomas R. Schiff The Sunshine Charitable Foundation Mrs. Mary Louise Tecklenburg Mrs. Virginia Willoughby Nancy and David Wolf Mike and Amy Zicarelli

Corporations, Foundations, Auxiliaries and Other Nonprofits Alex’s Lemonade Stand Foundation Anonymous Casey Lee Ball Foundation Bethesda Inc. CancerFree KIDS Pediatric Cancer Research Cassidy Turley Office Tenant Advisory Group Children’s Heart Assocation of Cincinnati Children’s Miracle Network Children’s Tumor Foundation ClearArc Capital Inc. Convalescent Hospital for Children

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The Cooperative Society Deloitte Deskey Associates Inc. Doris Duke Charitable Foundation Boomer Esiason Foundation Ethicon Endo-Surgery Fifth Third Bank and Fifth Third Foundation Bill and Melinda Gates Foundation The Gerber Foundation Iacono Production Services, Inc. Dr. Jack Rubinstein Foundation for Developmental Disorders

C I NC I NNAT I C H I L D R EN’ S

12/9/14 12:44 PM

John A. Schroth Family Charitable Trust, PNC Bank, Trustee Josh Cares Junior Co-Operative Society Kindervelt of Cincinnati Children’s Hospital Medical Center Kohl’s Cares Meshewa Farm Foundation Messer Construction Co. Ohio National Financial Services The Procter & Gamble Company Charlotte R. Schmidlapp Fund, Fifth Third Bank, Trustee Jacob G. Schmidlapp Trusts, Fifth Third Bank, Trustee

Ryan Seacrest Foundation Inc. Speedway LLC St. Baldrick’s Foundation Susan G. Komen for the Cure Toyota TriHealth Corporate Offices United Way of Greater Cincinnati Walmart/Sam’s Club Associates and Customers Western & Southern Open Whitehall Foundation, Inc.

Circle of Promise ($50,000-$99,999) Individuals and Family Foundations Mr. and Mrs. David C. Horn Johnson Charitable Gift Fund Liam’s Lighthouse Foundation Mrs. Nancy M. Miller Hannah Jo Smith Research for Leukemia Foundation Mr. John C. Smith, Jr. Albert and Liza Smitherman Sophie’s Angel Run

Annie W. & Elizabeth M. Anderson Foundation Anonymous (3) Mr. and Mrs. Michael Cambron The Ficks Family Foundation Mr. John S. Ficks Mr. Philip L. Ficks Richard A. Gerbhardt The Scott and Carolyn Hamlin Family

Corporations, Foundations, Auxiliaries and Other Nonprofits George and Margaret McLane Foundation Mercedes-Benz of Cincinnati, LLC Mitsubishi Electric America Foundation Muscular Dystrophy Association, Inc. PNC Foundation RCF Group Western & Southern Financial Group

Anonymous Chameleon Learning Group LLC Charles H. Dater Foundation Chimerix, Inc. Cincinnati-Northern Kentucky Honda Dealers Insuring The Children Jostin Construction, Inc.

Special Events and Community Organizations These events raised $50,000 or more in FY 2014.

Circle of Champions ($100,000+)

Circle of Promise ($50,000-$99,999)

Cincinnati Walks for Kids Celestial Ball Fifth Third Bank Tee Off for Project SEARCH Passport to Forever Ruth Lyons Children’s Fund Western & Southern Open

Cincinnati Golfers for Charity LOL for HLH Messer Construction* Sophie’s Angel Run StarShine Hospice Golf Classic The Warrior Run: The Race for Life *Cincinnati Walks for Kids Team

C I NC I NNAT I C H I L D R EN’ S

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PAG E 49

12/9/14 12:45 PM

OUR LEADERS

Note: Lists reflect leadership as of June 30, 2014

Officers of the Board Thomas G. Cody, Esq.

Chairman

Michael Fisher

President and Chief Executive Officer

Vicki L. Davies

Treasurer

Elizabeth A. Stautberg, Esq.

Secretary

Board of Trustees Sharry P. Addison

David Dougherty

M. Denise Kuprionis, Esq.

Robert D. H. Anning

Nancy Krieger Eddy, PhD

Peggy Mathile

Carol Armstrong

Michael Fisher

Jane Portman

Richard G. Azizkhan, MD

Vallie Geier

John Steinman

Lynwood L. Battle

Louis George

Arnold W. Strauss, MD

Maureen Bisognano

Beth Guttman

Pamela Terp

Michael Cambron

Deb Henretta

Felicia Williams

Willie F. Carden Jr.

Michael A. Hirschfeld, Esq.

Craig Young

Lee A. Carter

Mark Jahnke, Esq.

Thomas G. Cody, Esq.

Joyce J. Keeshin

Trustees Ex Officio

Trustees Emeriti

Rt. Reverend Thomas Breidenthal

Ralph Burchenal

S. Kay Geiger

Barbara J. Fitch

Gary Doc Huffman

Geoffrey Place

PAG E 50

C I NC I NNAT I C H I L D R EN’ S

Foundation Board S. Kay

eiger

ary Doc

Co Chair

u man

Co Chair

o ert eth

ramann uttman

Michael A. irsch eld, Esq.

Kit Andre s Michael D. arnes, Esq. Thomas rennaman

o ert S. Kahn, MD, MP Samir J. Kul arni Patric

ret Caller

a ey

Jane Portman J. Scott o ertson James Sch a William D. Sherman i a Smitherman Peter S. Strange

Da id Cassady

Jonathan a head

Kathryn Ann Weichert Kran uhl, MD

Thomas

Peggy Mathile

Allen aring,

Phyllis McCallum

James immerman, Esq.

Al in

. Cody, Esq.

. Cra

ord, MD

Michael Mc ra

Da id Ellis,

John P. Perentesis, MD, FAAP

ar ara Fitch

u i iari ancy Sorg President, The Cooperati e Society

Kathy Cassady President, Junior Co

perati e Society

Charlotte Mc rayer President, Kinder elt

C I NC I NNAT I C H I L D R EN’ S

PAG E 51

Senior Management Michael Fisher

Uma R. Kotagal, MD

President and Chief Executive Officer

Senior Vice President, Quality, Safety and Transformation

Richard G. Azizkhan, MD

Charles Dean Kurth, MD

Surgeon-in-Chief

Anesthesiologist-in-Chief

Elisabeth Baldock, PhD

Mark Mumford

Senior Vice President, Human Resources

Chief Financial Officer Senior Vice President, Finance

Brian D. Coley, MD Radiologist-in-Chief

Frederick Ryckman, MD Senior Vice President, Medical Operations

Jennifer Dauer Senior Vice President, Strategy and Growth

James A. Saporito Senior Vice President, Development

Michael K. Farrell, MD Chief of Staff

Elizabeth A. Stautberg, Esq.

Scott J. Hamlin

General Counsel Senior Vice President, Legal and Public Affairs

Chief Operating Officer

Cheryl Hoying, PhD, RN Senior Vice President, Patient Services

Arnold W. Strauss, MD Physician-in-Chief Chair, Department of Pediatrics, University of Cincinnati Director, Cincinnati Children’s Research Foundation

Marianne F. James Chief Information Officer Senior Vice President, Information Services

William M. Kent Senior Vice President, Infrastructure and Operations

PAG E 52

C I NC I NNAT I C H I L D R EN’ S

Raya, age 10 This is based on Raya’s drawing of happy, healthy families.

C I NC I NNAT I C H I L D R EN’ S

PAG E 53

FINANCIAL REPORT

Fiscal Year July 1, 2013 — June 30, 2014

OPERATING REVENUES AND EXPENSES OPERATING REVENUES Net Hospital Patient Services Revenue Capitation Revenue

(Dollar s in Thousand s)

FY 2014

FY 2013

$1,435,526

$1,332,851

35,032

—

Professional Services Revenue

289,064

263,380

Research Grants

163,071

157,693

Other Operating Revenue (includes philanthropy)

197,547

177,581

$ 2,120,240

$1,931,505

FY 2014

FY 2013

$1,246,876

$1,162,116

Services, Supplies and Other

577,580

491,944

Depreciation

109,214

110,378

14,170

14,247

$1,947,840 $172,400

$1,778,685 $152,820

TOTAL OPERATING REVENUES OPERATING EXPENSES Salaries and Benefits

Interest

TOTAL OPERATING EXPENSES AVAILABLE TO REINVEST IN THE MISSION

PAG E 54

C I NC I NNAT I C H I L D R EN’ S

CONDENSED BALANCE SHEET ASSETS

FY 2014

FY 2013

$156,830

$249,190

Marketable Securities

389,139

259,916

Patient Accounts Receivable, Net of Allowances

288,806

223,850

Other Current Assets

184,438

132,255

Cash and Cash Equivalents

$1,019,213

$865,211

998,397

908,535

Funds Held in Trust

38,097

62,803

Other Long-term Assets

61,128

65,873

1,298,688

1,111,650

$3,415,523

$3,014,072

$299,667

$239,891

32,609

26,995

CURRENT LIABILITIES

332,276

266,886

Long-term Debt

467,542

494,274

Other Long-term Liabilities

206,629

286,807

TOTAL LIABILITIES

$ 1,006,447

$ 1,047,967

Unrestricted Net Assets

975,039

710,714

Temporarily Restricted Net Assets

153,309

170,437

1, 2 8 0 , 7 2 8

1, 084,954

$2,409,076 $3,415,523

$1,966,105 $3,014,072

CURRENT ASSETS Property and Equipment, Net of Accumulated Depreciation

Interest in Net Assets of Supporting Organizations

TOTAL ASSETS LIABILITIES AND NET ASSETS LIABILITIES Accounts Payable and Accrued Expenses Current Portion of Long-term Debt

NET ASSETS

Permanently Restricted Net Assets

TOTAL NET ASSETS TOTAL LIABILITIES AND NET ASSETS C I NC I NNAT I C H I L D R EN’ S

PAG E 55

STATISTICAL HIGHLIGHTS

FY 2014

FY 2013

FY 2012

FY 2011

FY 2010

30,848

30,804

30,579

30,951

32,981

Average Length of Stay (days)

5.0

4.8

4.7

4.4

4.1

Emergency Department Visits

99,839

127,376

124,274

121,875

125,130

1,191,880

1,170,129

1,144,858

1,087,260

1,078,798

80,108

78,905

65,347

65,446

65,915

864,393

828,743

832,317

797,280

793,814

76,539

63,403

65,247

29,868

28,374

6,526

6,237

6,365

6,141

5,667

Outpatient Cases

25,325

25,951

27,094

26,168

25,492

Surgical Hours

43,954

45,655

44,240

42,874

40,825

1,734

1,493

1,572

1,516

1,498

Total Employees

14,973

13,852

12,932

12,654

12,368

Full-time Equivalents

12,681

11,799

10,976

10,781

10,455

PATIENTS Admissions (includes short stay)

Patient Encounters

OUTPATIENT VISITS Primary Specialty Test Referral Center

SURGICAL PROCEDURES Inpatient Cases

PEOPLE Active Medical Staff

PAG E 56

C I NC I NNAT I C H I L D R EN’ S

C I NC I NNAT I C H I L D R EN’ S

PAG E 57

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12/9/14 12:20 PM

THANKS FOR YOUR INSPIRATION! Our heartfelt thanks to the many children of our community who contributed their beautiful ideas, inspiration and artwork to this annual report: •

Patients at Cincinnati Children’s

•

Children’s for Children daycare center

•

Third-grade art class at our partner school, Rockdale Academy, Cincinnati, OH

•

Fifth-grade Advanced and Creative Talents classes at Mason Intermediate School, Mason, OH

PRODUCTION CREDITS Produced by

Due to space limitations, we were not able to include all the artwork we received. To see all the drawings, go online to:

Department of Marketing and Communications

http://www.pinterest.com/cincychildrens/children-contribute-artto-2014-annual-report/

Jane Garvey, Vice President

Cincinnati Children’s Hospital Medical Center

Writers Mary Silva, Managing Editor Timothy Bonfield Tom O’Neill Sarah Stankorb

Photography Tine Hoffman Jonathan Willis Additional photos from the Cincinnati Children’s archive

Design PROCLAMATION

ChildrensHospital_AnnualReport_Covers-Spine_FA.indd 2

12/9/14 12:22 PM

filling in the future c i n c i n n at i c h i l d r e n ’ s h o s p i ta l m e d i c a l c e n t e r

www.cincinnatichildrens.org

ChildrensHospital_AnnualReport_Covers-Spine_FA.indd 1

a n n u a l r e p o rt 2014

3333 Burnet Avenue • Cincinnati, OH 45229-3026

2 014 A n n u a l R e po r t

12/5/14 9:24 AM