There is a warm June breeze at the close of the second night of the competition inside historic Hotel Roanoke. Twenty-five 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, shelike the otherswill 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.
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.
|Nicole Johnson being crowned Miss America 1999.
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 e-mails 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 co-authored 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," 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 thisthose 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 rankingthird 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 3-year-olds 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 consultant, Goodman has done, among other important projects, a quality-assurance 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 Nicolewho can make a great difference by virtue of her fame and also her skillsreally 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 sixth-leading 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 two-to-four times higher among people with diabetes. It is also the leading cause of kidney disease and blindness among adults ages 20 to 74. And two-thirds of lower-limb 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 near-death scare, which she attributes to her vigilant diabetes management. But she admits being diabetic can seem like living with a "400-pound 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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