Mr. Gray Goes To Washington
By Joy Batteh-Freiha
Rush William Gray was a mere six years old when he was diagnosed with type 1 diabetes (T1D), the potentially fatal autoimmune disease in which a person’s pancreas produces little or no insulin, requiring multiple daily finger pricks for blood sugar tests, constant monitoring of food intake, and a lifetime dependence on injected or pumped man-made insulin.
Now, at age 16, Rush hardly remembers life without the condition.
But instead of wallowing in WHY MEs and WHAT IFs, he’s busy doing his part to help eradicate T1D: In July, the Ponte Vedra Beach, Florida resident traveled to Washington, D.C. to lobby Capitol Hill policymakers for research funding and access to improved T1D therapies.
A delegate of the JDRF (Juvenile Diabetes Research Foundation) 2015 Children’s Congress, Rush was among 160 children and teens hand-picked from around the U.S. who descended upon our nation’s capital for a once-in-a-lifetime opportunity to meet with officials at the highest level of government to share their personal stories of living with T1D and explain why funding for research is crucial. They were joined in their mission by additional representatives from Australia, Denmark, Canada, the Netherlands, the United Kingdom and Israel. “The message that I wanted my legislators to hear was how important it is to continue funding for JDRF research and the Special Diabetes Program, which both are bringing us closer to a cure at a faster pace,” Rush said. “I also wanted them to hear about my life with T1D, so they would see how important a cure is for those living with this terrible disease.
“And I wanted to ask them to support Medicare coverage for continuous glucose monitors (CGM),” he added. “Many seniors depend on them to maintain good blood sugar levels, which means less complications and that means less hospital visits, which could save Medicare lots of money in the long run.”
Besides meeting with Florida Congressman Ron DeSantis and Senators Bill Nelson and Marco Rubio (who is currently running for the Republican party 2016 presidential nomination), Rush spent time during the three-day congress socializing with celebrity role models, all of whom have the disease, including professional snowboarder Sean Busby, recent American Idol contestant Adam Lasher, elite professional cyclist Becky Furuta, “Beauty and the Beast” actor Austin Basis, former Miss America Nicole Johnson and retired LPGA pro golfer Carling Nolan. “It was great to hear about how these well-known people handle their life with type 1 diabetes,” Rush said.
Back on the home front, Rush is equally engaged. A typical teenager, he doesn’t let his diabetes stand in the way of doing what he loves most–dirt bike riding, jet-skiing and playing flag football and soccer–but is careful and cognizant at all times, carrying an emergency bag of diabetes items wherever he goes. “My family, friends, teachers and coaches know to grab that bag if I pass out,” Rush said.
“Sometimes it can be hard to balance the exercise and insulin doses,” he added. “My soccer teammates see me on the sidelines checking my blood sugar, because I don’t want to have problems during a soccer game and be stuck sitting on the bench waiting for my blood sugar to get back in range.”
He also serves as a youth ambassador for the Jacksonville chapter of the JDRF. And Rush and his family have made advocacy efforts a family affair, forming “Rush’s Rangers,” a walk team that participates in diabetes organizations’ fundraising efforts, such as the JDRF One Walk®, the organization’s flagship fundraising event and the largest type 1 diabetes event in the world.
“My family (mother, Becky; father, Axel, and 18-year-old sister, Murphy) and I have worked to bring awareness about life with T1D and the need for a cure to as many people as we can in our community,” Rush said. “I remember the first year that I attended the JDRF Walk to Cure Diabetes in Jacksonville, Florida. I was only seven years old. It was so exciting to see all the people that cared about me and everyone else living with T1D.”
“My mom now volunteers through the JDRF as a mentor to newly diagnosed families because she found it to be helpful when I was diagnosed,” he continued. “Plus, these organizations are a great way for kids living with T1D to get together and to know that you are not alone.”
His advice to other diagnosed with type 1 diabetes? “Be brave and do not let this disease stop you from enjoying life.”
Endocrinologists Go To Bat for Diabetes Causes
Along with the JDRF, a number of organizations advocate for diabetes patients’ care. Among them is the American Association of Clinical Endocrinologists (AACE).
AACE is the driving force behind the National Diabetes Clinical Care Commission Act (H.R. 1192/S. 586). The legislation proposes the creation of a public/private commission composed of the country’s foremost diabetes experts - endocrinologists, other clinical care specialists, patient advocates and representatives of federal agencies involved in diabetes care - to better coordinate diabetes activities that are currently managed by three dozen federal departments, to identify duplicative efforts and critical gaps, and to recommend new approaches to improve clinical care. For information on how to contact your government representatives and request their support, please visit: https://www.aace.com/diabetesbill
AACE also is pushing for the passage of the Medicare CGM Access Act (H.R. 1427/S. 804), which would ensure Medicare coverage of continuous glucose monitors (CGMs). A CGM is an FDA-approved, physician-prescribed device that continuously detects and displays a patient’s blood glucose level and also reveals patterns in the levels that often are not detected using finger-stick glucose measurements alone. By viewing continuous data and responding to CGM alerts, patients can respond to rising or falling blood glucose levels before they become dangerous. For more information about CGMs and how to support the Medicare CGM Access Act, please visit: https://www.aace.com/files/advocacy/cgm-fact-sheet.pdf