12-year-old with diabetes fights for lower insulin prices

Claire Goodowens says Type 1 diabetes diagnosis changed her life

WINTER PARK, Fla. – Claire Goodowens is a swimmer, student, photographer and child living with Type 1 diabetes.

Take a quick walk around her room and the medical supplies for managing her diabetes become obvious.

"The meters, the finger prickers, the alcohol wipes and the entire cabinet of pump insertions, and Dexcoms -- just dead giveaways,” Claire said as she stood near the swimming medals above her desk.

News 6 first introduced you to the 12-year-old in 2018, when she was the youngest artist ever to be featured in the Winter Park Sidewalk Art Festival. Her mother said Claire had a seizure the morning of the art festival and was transported to the hospital.

[PREVIOUS: 11-year-old artist will showcase work in Winter Park Sidewalk Art Festival11-year-old artist displays photos during Winter Park Sidewalk Art Festival]

“It sort of happened in slow motion,” Samantha Goodowens said. “The first couple of days, I was doing the injections for her, and she would just cry for, like, an hour. It took, like, an hour to do each injection.“

Her mother described the experience as “traumatizing.” 

Initially, managing her daughter’s diabetes was done by testing her blood with finger pricks. Now, Claire wears a Dexcom Continuous Glucose Monitoring device on her arm that uses bluetooth technology to connect to an insulin pump she either wears on her waistband or carries in her pocket.

During Claire's interview with News 6 anchor and health report Kirstin O'Connor, alarms went off around the house, signaling when Goodowens' numbers were high or low.

"Each Smarties roll is 5 carbs, which is really good for us diabetics because, when you go low, you don’t want to overcorrect,” Claire said.

Because insulin is a hormone, keeping it in check is unpredictable, especially for a child approaching the teenage years. At night, Claire’s parents take turns waking up to check on her if the alarms go off, using a flashlight and a bedside kit in case she needs insulin. 

“My husband said the best thing about it -- he says it’s like spending your day not blinking,” Samantha said.

Her biggest fear as a mother of a child with Type 1 diabetes is sleeping through the alarms.

“It’s called dead in bed syndrome, and that’s how most diabetics die,” she said.

Claire Goodowens, 12, is living with Type 1 Diabetes.

As a swimmer, Claire must prick her fingers and test her blood several times a day from the side of the pool. She said the Dexcom device is unreliable underwater. Until a new piece of technology called Eversense is approved for children, she will continue trying to predict when her levels are dangerously high or low. 

The family uses its sense of humor to keep the constant fear at bay. Claire carried a white bag labeled “HUMAN ORGAN” from her room.

“My diabetes supply basically is most of my pancreas so, I mean, it just makes sense. It’s a human organ,” Claire said.

But the cost to fill that bag with her lifesaving medication is no joke.

With insurance, Samantha said her family pays $1,000 to $1,500 a month for her daughter’s insulin and medical supplies.

[RELATED: Orlando teen recovering from rare genetic disorderNew training option helps patients who self-inject]

Claire and her mother did the math and said they could fly first class to Montreal, stay at a five-star hotel and then go to a pharmacy in Canada to buy all of Claire's insulin and medical supplies for six months over the counter and it would cost less money than it would to fill her prescriptions in the United States.

The Health Care Cost Institute reported a rapid increase in the amount patients with Type 1 diabetes were spending between 2012 to 2016. Insulin alone doubled in cost during that period and has gone up since Claire was diagnosed.

A recent JAMA Internal Medicine report showed 1 in 4 people living with Type 1 or Type 2 diabetes admitted to rationing their insulin.

"That shouldn't have to happen. One diabetic should not have to give another diabetic their supplies because that puts them in danger, too,” Claire said.

Now she is preparing to travel to Washington, D.C., with her Juvenile Diabetes Research Foundation chapter in Central Florida.

"I don't really want to go to Canada to get my medication,” Claire said.

Claire Goodowens, a 12-year-old girl living with Type 1 Diabetes, stands along Rep. Val Demings as she fights for lower insulin prices.

On Friday, U.S. Rep. Val Demings, of Florida's 10th Congressional District, met with Claire and a group of people living with diabetes and held a roundtable discussion concerning rising drug costs.

"It made a difference with me,” Demings said.

In July, Claire plans to launch a video challenge called the “Stick Together Challenge,” to encourage everyone to prick their fingers on the same day and raise awareness about Type 1 diabetes. 

About the Author: