Diabetes has a new face

 

 

Top: Former Miss America Nicole Johnson's mission is to increase awareness of childhood diabetes in developing countries. Bottom: Since children in the developing world still die from the disease, Rotarian Larry Deeb has made eradicating childhood diabetes his life's work.

When Nicole Johnson entered the Miss America competition in 1999, pageant officials asked her what cause she would trumpet as she traveled across the country fulfilling her duties. Rather than replying with a stock answer such as “fight for world peace” or “end world hunger,” she told pageant officials her platform issue would be to raise awareness of diabetes, which was diagnosed in her at 19 while attending the University of South Florida.

Johnson, now 34, says Miss America organizers pulled her aside and suggested she pick a more mainstream issue. “They said, ‘Is there going to be enough for you to do with diabetes if you win?’” she remembers. “As it turns out, I hold the record for being one of the busiest Miss Americas.” During her yearlong reign, Nicole traveled 20,000 miles a month, talking to audiences about the crippling disease that affects the body’s ability to produce or respond properly to insulin and can lead to blindness, heart attacks, stroke, limb amputations, and nerve damage.

She relinquished her crown in 2000, but Nicole didn’t abandon her mission. In conjunction with a group of Florida Rotarians, she continues to raise awareness of (and much-needed funds for) diabetes, specifically diabetes in children who live in developing countries. 

The statistics regarding diabetes are startling. According to the World Health Organization, diabetes affects 171 million people around the globe. The vast majority of those people live in developing countries. In 1995, the number of people living with diabetes in poor nations was 84 million. Because of population growth, aging, unhealthy diets, obesity, and sedentary lifestyles, experts expect to see that figure increase by 170% over the next 20 years. That means that, by 2025, 228 million people could have diabetes in such countries as India, Sri Lanka, Indonesia, and Africa. 

To bring attention to this epidemic, the United Nations spotlights the disease every year on 14 November: World Diabetes Day. This year, the theme of World Diabetes Day is diabetes in children and adolescents. According to the International Diabetes Foundation (IDF), around 440,000 children under the age of 15 suffer from Type 1 diabetes, or juvenile diabetes, an autoimmune disorder one has from birth that causes the destruction of insulin-producing cells. They estimate that tens of thousands of children suffer from Type 2 diabetes, which is caused by obesity and leads cells either to not produce enough insulin or to ignore it. With both diagnoses, children must test their blood sugar levels daily and receive insulin in order to control the disease. But since poor children in developing countries can’t afford testing strips or insulin, they die prematurely.

Larry Deeb is a man who lives to eradicate diabetes. He has been a member of the Tallahassee Rotary Club, Tallahassee, Fla., USA, for 17 years and, in his professional life, he works as the medical director for the Diabetes Center at Tallahassee Memorial Hospital. From 2006 to 2007, he also served as a president for medicine and science with the American Diabetes Association.

In 1995, just after he joined an IDF committee dedicated to insulin availability, Deeb approached Wayne Edwards, then president of his Rotary Club, and suggested they work together to raise funds for diabetes education and awareness. “My wife had Type 1 diabetes, and so does my oldest son,” Edwards says. But the two didn’t act upon the idea until Edwards became district governor in 1999. “Larry, my wife, and I started the Pink Pig project,” Edwards says. “We visited 40 clubs in our districts and gave each a piggy bank.” Members brought loose change to meetings, and by the end of the year, the Pink Pig project had raised $25,000.

Deeb and Edwards applied for and secured a Matching Grant from The Rotary Foundation. They donated the funds to a program Deeb had become smitten with during his years of involvement in the fight against diabetes: Life for a Child. Established by the IDF in 2000, the program helps children with diabetes in developing countries by providing existing health clinics with insulin and syringes, glucose monitoring tools, transportation for patients, clinical care, and diabetes education. “There are definitely issues in the American healthcare system,” Deeb says. “But it’s extremely rare for an American child with diabetes to die. At the end of the day, they get insulin and live. But children with diabetes in the developing world do die.”

Dr. Graham Ogle, program manager of Life for a Child, concurs. He adds that caring for a child with diabetes in a developing country can cost up to $700 per year, often more than the family earns.

Another problem children with diabetes in the developing world face is discrimination because of the disease. According to Johnson, who became the Life for a Child chair in 2004, children with diabetes in developing countries experience extreme prejudice, which can have deadly consequences. “There’s a perception that a girl with diabetes will never find a suitable mate,” she says. Other children are simply abandoned at the hospital after receiving the diagnosis. To prevent such tragedies, Life for a Child holds programs in developing countries to debunk diabetes-related myths.

In 2000, before Rotary entered the picture, Life for a Child operated clinics in five developing countries. But with the money raised by Deeb and Edwards, the program began to expand around the globe. The first Rotary club-sponsored Life for a Child program was established in 2003. Using funds from the Pink Pig project and the Matching Grant, Deeb and Edwards traveled to Cochabamba, Bolivia, and in conjunction with Life for a Child and the local Rotary Club of Quillacollo, established eight clinics across the country. These clinics provide more than 100 children with free insulin and testing supplies, as well as diabetes education workshops.  

Edwards and Deeb aren’t the only Rotarians supporting Life for a Child. In 2003, after the two spoke about Life for a Child at an IDF meeting in Paris, Massimo Massi-Benedetti, an Italian doctor, Rotarian, and the governor of District 2090, decided to get involved. He raised money from clubs in his district and, early this year, established six clinics in Cameroun that offer insulin, diabetes testing, and treatment. Deeb says this proves that “As long as there is interest, we can make it work.” Your club can get involved with the program through www.deeb.org.

What is the impact of Life for a Child? In Rwanda, a little girl named Pascaline developed diabetes at age one. Because she lived in a remote village that did not stock insulin at its clinic, she had to travel 180 kilometers to the nearest hospital. She spent a year in a small room there, far from her family. But when Life for a Child supplied the clinic in her village with insulin and trained the staff in how to care for her and children like her, she was able to return home. 

“I recently met a woman named Josine in Rwanda,” Ogle adds. “She has had diabetes since she was 14 and has been supported by the program since it commenced. Earlier this year she gave birth to her first child. Delivery for any pregnant mother with diabetes can be dangerous, and particularly in Rwanda where hospital resources are often limited. We arranged for expert care, and Josine gave birth to a healthy boy.” Ogle estimates that of the nearly 1,000 children the program supports, only 5 or 6 perish each year. “Without the program, the number would be much higher,” he adds.

Deeb and Johnson are working together to get the word out about Life for a Child. Johnson has accompanied Deeb to speak about the program to Rotary clubs across the country. Deeb admits a beautiful woman is an immediate draw, but in the end, saving children trumps that.