Diabetes Forecast

Teen Stands Up for Young People With Diabetes

ADA's National Youth Advocate tackles diabetes awareness and health policy on the local and national levels

By Kelly Toves , ,

ADA National Youth Advocate Amy Johnson with Jonas Brothers band members
Joe (left) and Nick Jonas at a benefit concert in May.

When a group of security guards pulled Amy Johnson, 18, aside at a California airport in May, she was embarrassed. Sure, she had noticed their glances while she was in line, their eyes darting toward the insulin pump she wore outside her clothing, on her hip. But this had never happened to her before. One guard motioned to another, and soon she found herself stepping through the isolation chamber at the security checkpoint.

Johnson, who was diagnosed with type 1 diabetes in 2004, says that the guards made her feel as though it were her fault she had to go through extra security, for wearing her pump where it was visible. It helped her appreciate another way that she could advocate for the rights of people living with diabetes—something she is working on this year as the American Diabetes Association's 2010 National Youth Advocate. "I'm not ashamed of my diabetes, but it made me feel so horrible that they would bully me for [wearing my insulin pump]," she says.

Johnson was on her way back home to Kansas City, Mo., after a diabetes benefit concert in Beverly Hills, Calif., which she attended in her capacity as youth advocate. The "Rock for Diabetes" event benefited the Division of Endocrinology, Diabetes, and Metabolism at the Children's Hospital in Los Angeles and featured a live performance by the Jonas Brothers, whose youngest member, Nick, has type 1 diabetes. Johnson got to meet the band, Hollywood celebrities, and diabetes care professionals at the benefit, which was held at the home of actors Danny DeVito and Rhea Perlman.

Uniting Youth With Diabetes

As National Youth Advocate, Johnson does much more, of course, than appear at glitzy Hollywood gatherings. She travels around the country encouraging others to get involved in the fight to stop diabetes. She has spoken to kids at ADA Diabetes Camps and visited legislators on the state and national levels to lobby for the needs of youth with diabetes. In June, she attended ADA's 70th annual Scientific Sessions, the world's largest conference on diabetes, where the newest research was presented. Her mission, she says, is "to band together all youth with diabetes, no matter what type they have, and remove the stigmas associated with the disease."

One personal step Johnson has taken to do that is wearing her pump for all to see. Despite the airport incident, she continues to do so, and other young people take notice. At "Rock for Diabetes," as the Jonas Brothers played on stage, a woman walked up to Johnson and told the teen how her daughter, who also has type 1 diabetes, had always felt uncomfortable letting her pump show. When the girl saw Johnson in the crowd before the concert with her pump on her hip, the woman said, it made her realize she had nothing to hide. Johnson says it was the first time she understood the impact she could have on other young people living with diabetes.

Over the summer, Johnson talked with children at ADA Diabetes Camps about her and their experiences. Johnson knows better than most the value that camps have for kids; she attended ADA Camp Shawnee in Prairie Village, Kan., the summer after her diagnosis. Johnson's roommates there taught her all about insulin pumps, helping her see that they weren't as restrictive or cumbersome as she had feared. Eventually, she decided to get one of her own.

Advocating for Healthier Choices

Johnson has also shown a keen interest in health care policy as it affects people with diabetes. She has met in Washington, D.C., with members of Congress and Capitol Hill staffers to discuss how to improve diabetes prevention and promote healthy lifestyles. "We waste billions every year on diabetes complications that can be prevented," she says.

After speaking with aides to Sen. Claire McCaskill (D-Mo.), Sen. Blanche Lincoln (D-Ark.), Rep. Sam Graves (R-Mo.), and Rep. Michael Castle (R-Del.) about health policy, Johnson developed an interest in menu labeling. Her goals: to ensure that schools, restaurants, and other public places make nutrition information available and offer more healthy foods. She went home from Washington and pushed for immediate changes at her own school, Park Hill High in Kansas City. She recalled how she had gone back to school after her type 1 diagnosis and been amazed by how unhealthy many of the food choices were. "I was calculating the carbs in my head and thinking, 'That's terrible,' " she says. "I was kind of shocked by it."

Her lobbying was successful. Park Hill High took junk foods out of its vending machines and replaced them with diet sodas and 100-calorie snack packs. Johnson hopes for still healthier options than the snack packs but, she says, they're a start. "If you want to make a decent attempt at eating healthy," Johnson says, "you have to know what you're eating."

This fall, Johnson is a freshman at the University of Missouri at Kansas City. A premed student, she'd like to become a pediatric surgeon. It's a career she decided to pursue while a volunteer at Children's Mercy Hospital in Kansas City, where she was president of the Teen Advisory Board. She shadowed doctors there and lobbied for changes to benefit young patients, such as hosting social events for youth and acquiring more games for the hospital. It was her first experience officially standing up on behalf of a group of young people, something she expects to keep doing for kids with diabetes throughout her year as National Youth Advocate and beyond. "With diabetes," she says, "you have no excuse to sit on the sidelines."

For updates on Amy Johnson, visit diabetes.org/nya.



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