Jonah Marks is just 11, and he’s already mastered the art of storytelling. He developed his storytelling skills over the years by explaining his Type 1 diabetes to his classmates at the beginning of each school year. He essentially tells them that his pancreas doesn’t work like theirs, and then shows them all the equipment he uses to mimic what their bodies do naturally.
His skills were on display in a recent meeting with U.S. Rep. Ted Lieu. The Democratic congressman had agreed to meet with a group of JDRF Board members and their family members who live in his district. The group wanted to thank him for his support of research funding for diabetes and to seek his support for another bill that would require Medicare to pay for the latest technology for monitoring diabetes, the Continuous Glucose Monitor (CGM), for seniors. Most large private insurance companies pay for this technology for younger people because it has great potential to improve diabetes management so that those living with the disease can avoid the costly and devastating long-term consequences of diabetes, which include amputations, blindness, heart disease and premature death.
Explaining the benefits of CGM is complicated – unless you have someone like Jonah. The youngster pulled out his CGM and smart phone and demonstrated how it constantly monitors his blood glucose (sugar) levels and reports the numbers to his phone and his parents’ phones. With this information, his parents can work with him to properly respond to the readings.
Because of the CGM and his ability to communicate with his parents via cell phone, the 11 year old can effectively manage his diabetes on his own. That means he can be more independent. He can address his diabetes issues more quickly, and he can spend more time in class, instead of spending it in the health office.
Jonah also vividly described how he can’t think clearly or follow along in class when his blood glucose levels are out of range. Jonah’s effectiveness as a storyteller ensured Rep. Lieu had a clear understanding of why effective monitoring to keep blood glucose levels in range is important to the young and the old. It also illustrates the importance of having the right messenger to deliver your story – no matter his or her age or stage in life.
Personal accounts, especially from vulnerable individuals, are powerful and persuasive ways to bring about change. One youngster or another person who is genuine and can honestly represent all who live with the same circumstances can effectively increase awareness and understanding. By doing so, this spokesperson can ultimately move decision makers to change.
To read an account of Jonah’s advocacy in the local media, please click here.