The thought of juggling dance, soccer, track and cross country may sound like a lot of work for a 14 year old, but Jemtegaard Middle School student Paige Maas makes it work.
Paige not only enjoys these sports, they are her way of doing everything possible to live a healthy life while maintaining her Type 1 diabetes, also known as juvenile or insulin-dependent diabetes, says Paige’s father, Brad Maas.
Paige was diagnosed with Type 1 diabetes when she was 7 years old, and has used her experience dealing with the condition to become an advocate for the American Diabetes Association (ADA).
As an advocate, Paige submitted a question to Congresswoman Jaime Herrera Beutler for the representative to read during the 2019 Budget Hearing for the National Institute of Health on April 11.
Herrera Beutler read Paige’s statement to Dr. Francis Collins, director of the National Institutes of Health (NIH): “As a Type 1 diabetic, diagnosed seven years ago, I can tell you that living with diabetes is a daily pain. Thankfully, technology developed through NIH research including continuous glucose monitors and insulin pumps has made my condition easier to manage. However, this technology is far from perfect. What new technology is the NIH working on to improve the lives of people living with diabetes? What research is going into better technology that will improve diabetes care? What promising research is the NIH supporting that might eventually lead to a cure?”
In response, Collins said this is a very promising and exciting time for Type 1 diabetes, as there are major advancements happening, including the creation of an “artificial pancreas” that may be able to convince a body to produce insulin.
“That is our hope then, for having the best way to regulate glucose and insulin and the greatest chance of reducing the consequences of long term Type 1 diabetes,” Collins said. “Which includes all those consequences that we try to avoid, like eye disease and kidney disease. I think it would be fair to say to Paige: she’s in a good position to probably be one of those who will see these advances happen in her lifetime.”
The eighth-grader has gone to Washington D.C. three times to speak to members of Congress on behalf of the 640,000 Washingtonians diagnosed with diabetes. In late March, Paige joined 150 other advocates in D.C., and called on Congress to provide $2.165 billion to the NIH’s National Institute of Diabetes and Digestive and Kidney Diseases, the primary federal agency that conducts research to find a cure and advance treatments for diabetes; allocate $185 million for the Center of Disease Control and Prevention’s Division of Diabetes Translation, which spearheads essential efforts to reduce risk, complications, treatment and management of diabetes while also continuing innovative translational research and surveillance; allocate $25 million for the National Diabetes Prevention Program; and increase transparency, affordability and access to insulin.
While only 5 percent of people diagnosed with diabetes have Type 1, Paige advocates for all the forms of the condition.
In Type 1 diabetes, the body does not produce insulin. With Type 2 diabetes, the body resists insulin and does not use it properly, according to ADA. Additionally, pregnant women who have never had diabetes before but who have high blood glucose (sugar) levels during pregnancy are said to have gestational diabetes.
Paige’s main concerns center around finding a cure, as well as funding new technology and addressing insulin affordability.
The insulin that has been used since the ’90s has gone unchanged, but has tripled in price over the past 11 years, Paige’s father, Brad, said.
“That’s concerning, and we are looking for better transparency when it comes to insulin pricing,” he said.
The test strips Paige uses up to nine times each day cost $1 each. Paige estimates that she has pricked her finger for blood about 15,000 times since her diagnosis.
She currently uses an omnipod, an insulin pump that she puts on her arm, leg or back. The device is bluetooth operated and uses a personal diabetes manager to control her insulin levels. Though the device has proved helpful for Paige, Brad said the family has had pushback from their insurance company.
“It’s very frustrating where an insurance company is trying to make the decision … where it simply needs to be a choice between the doctor and patient,” Brad said.
Paige said she is finding her disease easier to deal with as she gets older, but that there are still struggles to overcome.
“It definitely impacts sports big time,” she said. “When I have really high blood sugar or really low blood sugar, I have to sit out, which is never fun … I might have to sit out for 15 to 45 minutes, depending on how bad it is.”
Paige has had to leave school early and miss classes because of her disease.
“Whenever I eat something, I have to check my blood sugar and give myself insulin,” Paige said. “Which means I have to stop what I’m doing just to do that. Also, if my blood sugar is off, I feel it — I might be extra tired or I might notice it just sitting down. I’ll get really drowsy or feel sick.”
Paige attended Hathaway Elementary School, before Jemtegaard. Next year, as a Washougal High freshman, Paige will be a part of the school’s cheerleading team.
“We’re very complimentary of the Washougal School District,” Brad said. “One of the things we worry about, if she’s low especially, is if she were to pass out in the hallway someplace and nobody finds her for 20 minutes. So (the schools) have all these protections in place, and that’s something we are thankful for.”
The Maas family is on a mission to help find a cure for Type 1 diabetes, support research into better technology, protect patients and advocate for funding for the National Diabetes Prevention Program for Type 2 diabetes.
In Washington State, an estimated 173,000 people have diabetes but don’t know it, according to the ADA. The association also calculates that about 36 percent of Washington’s adults are pre-diabetic.
Brad encourages people to talk to their doctors and be tested for diabetes because there are prevention methods for Type 2 diabetes.
He recommends visiting www.diabetes.org/are-you-at-risk/diabetes-risk-test to understand the risk factors.
The family is very active with fundraising and participates in the Tour de Cure, the ADA’s largest national fundraising event, in which participants walk, run and cycle to raise money for diabetes research, under the team name “Paige’s Pilots.”
The 2018 Tour de Cure for the Oregon and Southwest Washington region will be held on July 28, in Hillsboro, Oregon. For more information, visit www.diabetes.org, click on the “Tour de Cure” logo at the top of the page and enter your zip code in the search bar.