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Photograph supplied by
Nicole Johnson
Contents
Contestants in statewide pageants dream of one day vying for the Miss America
crown and receiving the academic scholarship money that goes with the victory. One
Miss Virginia entrant, though, had her dream about winning sidetracked. She was
too busy fighting for her life.
There She Is
Jonathan Szish
There is a warm June breeze at the close of the second night of the
competition inside historic Hotel Roanoke. Twenty­five young ladies get
to rest after enduring the preliminary swimsuit, evening gown, and
interview competitions; they’re in their own hotel rooms now, mentally
rehearsing for tomorrow night’s final performance in the talent
category. One contestant, having put the day’s hard work behind her,
sneaks a midnight snack of graham crackers. Tomorrow, after
rehearsing for several hours, she—like the others—will go on stage yet
again. Before judges and 1,000 fans of the Miss Virginia pageant, she
will sing "With One Look" from the musical Sunset Boulevard.
But the next morning contestants and guests see an alarming sight as
they fill the hallway. A gurney props open the door to that one
contestant’s room. Two paramedics blur past. The contestant’s parents
are praying for their daughter’s life as they feverishly try to work a
glucose monitor, ripping their daughter’s finger with a needle in a
desperate attempt to get some blood on a test strip to read her blood
sugar. The father bolts into the hallway and elbows his way back into
the room, his arms full of soda and orange juice to pour down his
daughter’s throat. The drinks mostly dribble all over her pajamas. No
response. Her eyes are open, but coldly fixed.
After nearly 40 unresponsive minutes, Nicole Johnson at last awakens.
Her first words are: "Does anybody know?"
Everyone did know. In that crowded hotel hallway, Johnson, then 23,
had to face her greatest fear: Exposure. The first five years after having
been diagnosed with Type I diabetes, she had lived life wearing a mask,
afraid of what others would think. That night of the Miss Virginia 1997
competition changed everything.
"It’s more destructive to live life with a mask on," says Johnson, who is
a student in Pitt’s Graduate School of Public Health (GSPH). "I had to
come to terms with my own fears. I reached a point where my life had
to be real and authentic, not a show. For five years I took medication,
but I just kept it mostly private. I lived with embarrassment. After that
episode, I could no longer hide. I am proud to be the person God made
me to be."
Hours after the scare, she returned undaunted to the competition and
placed in the top 10. The next year, she was crowned Miss Virginia,
giving her a shot at winning the Miss America competition. She did win,
netting the college scholarship money she sought during her six years
in the pageant system.

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Nicole Johnson being crowned Miss America
1999.
It was the episode at the 1997 Miss Virginia pageant, though, that
made her take her diabetes more seriously. Out of the closet came her
insulin pump, the one she had stuffed away, because it looked too bulky
around her waist. She started testing her blood glucose levels more
often, with all the fingertip pricking that goes with it, six to eight times
a day. And she eventually went public about the disease that she
shares with 171 million people worldwide, a figure expected to more
than double by 2030, according to the World Health Organization.
She has transformed herself into
an international diabetes
awareness warrior. There is no
cure for the disease, and its
cause remains a mystery.
Genetics, obesity, and lack of
exercise appear to play a role in
the two types of diabetes.
Johnson’s type, Type 1 diabetes,
develops when the body’s
immune system destroys
pancreatic beta cells, the only
cells in the body that make the
hormone insulin, which
regulates blood glucose. Lifelong
insulin therapy is the only
treatment. Type 1 accounts for
up to 10 percent of all diagnosed
cases of diabetes. Type 2
diabetes accounts for the rest. It
usually begins as insulin
resistance, a disorder in which
cells do not use insulin properly.
The pancreas gradually loses its
ability to produce insulin. Type 2
diabetes is often associated with
obesity, family history of diabetes, and race. African Americans, Latino
Americans, and Native Americans are at a particularly high risk for Type
2 diabetes.
Johnson has told her story in 12 countries and 47 states. She has
lobbied members of the U.S. Congress and helped raise more than $16
million for diabetes research. She has answered thousands of letters
and e­mails from people who have visited her Web site,
www.nicolejohnson.com. She works as a diabetes spokesperson and
consultant for companies and for the American Diabetes Association.
She has written an autobiography and co­authored two cookbooks for
diabetics.
With such a packed schedule, she often finds herself flying out of
Washington, D.C., after a morning of lobbying, hoping to land in
Pittsburgh in time for her next Pitt class in behavioral science or
epidemiology, which is the study of how often diseases occur in different
groups of people and why.
Without the diabetic episode at the Miss Virginia pageant in 1997, she
believes her life would have been much different, even when it came to
winning Miss America. Her recollection of the pageant is not one of
adrenaline and applause, but of how the experience gave her a new
perspective. "It was a way for me to get up on a stage, to perform, to
strive for something, to be involved with something while I was living
with a chronic disease. It helped me look outside my condition,"

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Johnson says.
While winning Miss America was the thrill of a lifetime, there is a
downside. "A lot of people hate to hear me say this—those who are
intense fans of the organization, and I am a fan as well, but every day I
have to fight against the perception from society that you’re just
another pretty face. I’m amazed at how many people ask, ‘How can you
truly be advocating for a cause when you stand up on stage in a
swimsuit?’"
She believes that a master’s degree from GSPH’s Department of
Behavioral and Community Health Sciences will help change that
perception. She hopes to earn it within two years. She says she was
drawn to the school, in part, because of its high ranking—third among
public health schools in National Institutes of Health (NIH) funding.
Diabetes research at GSPH actually got on the map in 1979 with the
groundbreaking collaboration of Allan Drash (then chair of pediatrics,
Children’s Hospital of Pittsburgh, and professor emeritus of pediatrics at
Pitt) and Lewis Kuller (then chair of epidemiology, GSPH, and now a
professor in the Department of Epidemiology). They combined clinical
and epidemiologic research approaches to study the factors that cause
Type 1 diabetes. With initial funding from the NIH, this program has
flourished during the past 25 years and now includes hundreds of
researchers around the world. In 1985, GSPH was also designated as
the World Health Organization’s Collaborating Center for Diabetes
Registries and Training, making it part of a network of 25 international
centers undertaking one of the world’s largest multinational studies of
chronic diseases.
Most GSPH students are unaware that a Miss America is among them.
Johnson already has earned a master’s degree in journalism from
Regent University. "A master’s degree in journalism is great and very
useful, but I craved some kind of formal medical education as well," she
says. "The way we’re teaching people now is only somewhat effective.
People don’t realize that we can prevent diabetes by 50 percent or more
if we only walk. That health message is not getting through."
Not surprisingly, for her final project in her ethnographic research class,
she evaluated diabetes education programs. She came up with ideas on
how medical professionals can improve communication with patients. "I
believe every person with diabetes has the capacity to learn. We cannot
ignore people because of age, experience, education, or any other
factor. For example, you can teach 3­year­olds to get the glucose
measurement stick out of the bottle and put it in the monitor; that’s
their job. It gives them a sense of ownership."
Her goal of improving the way medical professionals relate to patients is
right in line with the goals of her department, Behavioral and
Community Health Sciences. The questions the department tries to
answer are puzzling. How do you get people to eat five fruits a day for
health if they live on an Indian reservation and don’t have electricity or
refrigeration? How do you get urban diabetes patients to trust your
message if they don’t trust organized health systems?
Johnson and her classmates work with graphs to see how diabetes
spreads across a community. They learn about methods that reduce
diabetes in communities where it is prevalent. They’re schooled in
behavioral strategies to help people regulate their diabetes. They learn
the importance of influencing policy changes locally and nationally.
The department chair, Robert Goodman, is internationally renowned for
his work with the Centers for Disease Control (CDC). As a CDC

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consultant, Goodman has done, among other important projects, a
quality­assurance evaluation of the National Diabetes Prevention
Center, which promotes diabetes prevention and control among the
Navajo Nation, Zuni Pueblo, and other Native American tribes.
"Having someone like Nicole—who can make a great difference by
virtue of her fame and also her skills—really supports what we’re trying
to bring to our mission in public health," Goodman says. "I think Nicole
is really another jewel in our crown, or we’re a jewel in her crown."
From his first meetings with her when she began as a Pitt student, it
was clear to Goodman that she knew the same "players" in national
diabetes awareness that he did. These are the people with whom
Goodman, with all his clout as a CDC consultant, has a hard time
getting appointments.
"So I was telling her about the quarter of a million dollars I was hoping
to get from CDC," recalls Goodman, "and she turned around and said to
me, in a very nice way, that she had just helped get this $10 million to
fund a project, and maybe she could help link us. It made me think
right away that I was probably going to the wrong funding source. I’ll
probably have to go to Nicole to get resources for my work," he says
jokingly.
U.S. Representative John Murtha (CAS ’62), from Johnstown, Pa., says
Johnson’s advocacy was a "very big part" of his decision to push for $10
million in federal money to fight what he called a diabetes epidemic in
Western Pennsylvania. Murtha also read Johnson’s autobiography,
Living With Diabetes.
"I just remember being so impressed that here was this beautiful young
woman and she had diabetes and it didn’t affect her," Murtha says.
"She was such an inspiration to me. This is a tough disease."
The $10 million grant Murtha supported was awarded earlier this year
to the University of Pittsburgh Diabetes Institute, directed by Linda
Siminerio, who is also senior vice president of the International Diabetes
Federation (IDF) and an assistant professor of medicine and nursing at
Pitt. The institute, formed in March 2000, aims to improve diabetes care
and promote prevention efforts. It has close ties with researchers at
GSPH, as well as the School of Medicine, School of Nursing, and School
of Pharmacy.
Murtha says fighting diabetes could save more lives than fighting
terrorist attacks. Figures from the American Diabetes Association show
that it is the sixth­leading cause of death in the United States,
contributing to more than 200,000 deaths each year. Worldwide, that
figure is 3.2 million deaths each year, according to the World Health
Organization and the IDF.
Epidemic death isn’t diabetes’ only grim legacy. According to the
American Diabetes Association, the risk for stroke and heart disease is
two­to­four times higher among people with diabetes. It is also the
leading cause of kidney disease and blindness among adults ages 20 to
74. And two­thirds of lower­limb amputations performed in the United
States are for people with diabetes.
"This could be the biggest project that I’ve been involved with in the 30
years I’ve been a congressman," says Murtha, who is an influential
member of the House Appropriations Committee.
As for Johnson’s health, she has avoided a repeat of her near­death
scare, which she attributes to her vigilant diabetes management. But

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she admits being diabetic can seem like living with a "400­pound weight
sitting on your shoulders that’s never lifted because there’s always
something to be concerned about, always something to be worried
about, always something that seems to be going wrong. At times, you
feel like you just never can win. And that’s tough; it’s a psychological
and physical battle."
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