GRANVILLE — Max and Julia Lerner discovered at an early age if you want action, you have to speak out.
The two Granville youths were advocates for better treatment of and an eventual cure for diabetes by serving as delegates at the Juvenile Diabetes Research Foundation’s Children’s Congress 2011 in June in Washington, D.C. Their parents, Michelle and Mitch, accompanied them.
The 150 delegates represented every state and ranged in age from 4 to 17. Max, a 10-year-old who will be a fifth-grader at Granville Intermediate School, was the youngest person in the seven-member Ohio delegation. Julia, 14, will be an eighth-grader at Granville Middle School.
One purpose of the biennial congress is to raise awareness about type 1, or juvenile, diabetes, and lobby the federal government to work more aggressively for a cure. About 215,000 people younger than 20 have diabetes, according to the National Institutes of Health’s website. Most of them have type 1 diabetes.
Max and Julia have had type 1 diabetes since they were young. Their bodies do not naturally produce insulin, a hormone that regulates the amount of glucose in the blood. (Type 2 diabetes, which can be caused by obesity, is a metabolic disorder in which a person’s body still produces insulin but is unable to use it effectively.)
With the help of pumps that inject the amount of insulin they need to adjust their blood sugar level, the two kids’ diabetes is “tightly under control,” said Michelle Lerner. Both children are active in sports. Julia plays lacrosse and field hockey. Max plays ice hockey and is involved in karate.
During their Capitol Hill visits, Julia and Max met with Rep. Pat Tiberi, R-12th District, and Ohio Sens. Sherrod Brown and Rob Portman, asking them to urge the U.S. Food and Drug Administration to move faster on the approval of an artificial pancreas, which automatically injects the right amount of insulin into the body of a person with diabetes at the appropriate time.
“The (focus of the) Congress was more than anything else about the artificial pancreas and getting it approved,” Julia said. “They have it in Europe and parts of Canada.”
The FDA is asking for feedback from professionals on an early version of the artificial pancreas, according to a press release it issued in June.
In a meeting alone with Tiberi, Julia and Max brought along scrapbooks they had assembled and told their stories of growing up with diabetes. In meetings with Brown and Portman, they were accompanied by other delegates from Ohio.
“They were at a long table,” Michelle said. “Both Max and Julia talked.”
“It was great to see so many Ohioans getting involved in issues that they care about, a fundamental aspect of our democracy,” Portman wrote in an email. “With the growing cost and prevalence of diabetes in Ohio and the United States, I recognize the positive impact treatment has on our nation and support the research that is being done in this area.”
In 1997, Congress approved a special funding program for the prevention, treatment and cure of type 1 diabetes. The program is providing $1.9 billion from 1998 through 2013.
Tiberi and Brown have signed letters to the FDA supporting the development of an artificial pancreas.
“We encourage your agency to quickly take into account guidance put forth by leading experts in the field … so that this promising technology may be made available for those with type I diabetes in the near future,” said a letter sent April 15 by a number of members of the House of Representatives, including Tiberi.
Several luminaries who have diabetes spoke to the delegates, including U.S. Supreme Court Justice Sonia Sotomayor and swimmer Gary Hall Jr., a sprinter and Cincinnati native who won six Olympic medals after being diagnosed.
Carling Coffing, a diabetic and professional golfer from Middletown, Ohio, who has worked to be a role model for children with diabetes, made a particularly strong impression on Max and Julia.
“She spent a lot of time with the delegates from Ohio,” Michelle said.
Also, Crystal Bowersox, a singer from northeast Ohio who was runner-up in the 2010 American Idol competition and who also has diabetes, joined the Ohio delegation in meetings with the two Ohio senators.
During their free time, the Lerners visited some of Washington’s museums and the Washington Monument, which Julia declared was “cool.”
An invaluable part of the experience was meeting other children with type 1 diabetes, children to whom they needn’t explain the challenges of living with the disease.
“They had a comfort level of not having to explain what diabetes is, of them not feeling you are different,” Michelle said.
Children with diabetes can be delegates at the Congress only once. But Julia already has plans to serve as a volunteer when she reaches 17, the minimum age.
“She would help with planning and registration, directing delegates where they need to go,” Michelle said.
