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Student speaks to FDA about diabetes

Posted: August 21, 2016 - 12:03am  |  Updated: August 22, 2016 - 6:07pm
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Lakeside High School student Caroline Dorn shows her new Spanish teacher Dawn May her continuous glucose monitor.  Photo by Abbigail Lennon
Photo by Abbigail Lennon
Lakeside High School student Caroline Dorn shows her new Spanish teacher Dawn May her continuous glucose monitor.

Caroline Dorn is a normal high school student. Now in her sophomore year at Lakeside High School, she has become a teacher of sorts and the subject is diabetes education.

September will mark three years since Caroline, now 15, was diagnosed with Type 1 diabetes, an autoimmune disorder where the pancreas stops producing insulin, which helps get sugar to the body’s cells giving it energy.

Caroline has used her new lifestyle living with diabetes, as a teaching tool and has since become an advocate for others with diabetes.

She traveled to Washington D.C. with her mother, Alice Dorn, in July, to speak to an advisory panel for the Food and Drug Administration.

Caroline joined more than 30 medical doctors and other experts in the field, including medical staff from Harvard and Yale, who spoke in support of using a newly developed continuous glucose monitor for insulin dosing.

“I am a type 1 diabetic so I use a CGM everyday. It monitors my blood sugar interstitially every five minutes instead of having to prick my finger,” Caroline said. “I talked to the FDA about why I think they should approve the CGM’s for insulin dosing because I think that’s really important, your diabetes isn’t as obvious, not having to prick your finger as much, it’s more remote.”

Caroline uses a Dexcom CGM which implants a hair-like filament underneath her skin that monitors her blood sugar levels and sends a reading every five minutes to smartwatches both Caroline and her mother wear called a Pebble SmartWatch.

If irregular sugar levels, high or low, are returned it will sound an alarm, prompting Caroline to either trigger her insulin pump to bring her sugar levels back up, or to take a walk and drink some water to bring her levels down.

Before she began using the CGM two years ago, Caroline said she was pricking her finger to monitor blood sugar levels anywhere from 12-24 times a day.

“She had to prick her finger any time she wanted to dose insluin, to eat or if she didn’t feel right, she’d have to prick her finger to see where she was,” Alice Dorn said, adding that the monitor also helps track trends in Caroline’s changing sugar levels.

“A fingerprick just gives us one moment in time, it doesn’t tell me anything about an hour ago, or an hour from now,” she said, adding that it saves Caroline time when dosing insulin in class. “We can enter that number instead of having to prick her finger while the teacher is trying to explain parabolas. We can look at the meter and we can make dosing decisions without having to stop, clean the finger, prick the finger, put the blood on the strip, everything is going ‘beep, beep, beep, beep, beep,’ and the teacher is still talking about parabolas and she’s having to compute both things at one time.”

Caroline said she still has to prick her finger everyday to calibrate the CGM to ensure the monitor is sending out proper readings, but that the monitor is a welcome relief and is an advocate for its use for others.

The diaTribe Foundation, a national nonprofit diabetes advocacy and awareness group, which the Dorns are members of, funded Caroline’s trip to Washington.

“They also are big in the national conversation, particularly bringing the patient view to the FDA, which is what they did with Caroline,” Alice Dorn said of the foundation. “But their support of (Caroline) and encouragement and growing her as a patient advocate for herself and for others like her is huge.”

Renowned advocate and diaTribe founder Kelly Close also has type 1 diabetes. Close is someone Alice Dorn said has been a major supporter of Caroline, and encouraged her to ask for the opportunity to share her positive experience with the CGM in Washington.

According to The diaTribe Foundation website, one in seven adults have diabetes and $245 billion is spent on diabetes health care each year in the U.S. By 2040 it is projected that more than 642 million adults will have
diabetes.

“To fight this growing crisis, The diaTribe Foundation was founded with a mission to improve the lives of people with diabetes, prediabetes and obesity, and to advocate for action,” according to the website.

Close also attended the hearing.

“Caroline was insightful, persuasive, engaging, and oh-so-composed in her compelling speech at the FDA, and she spoke such truth,” Close said in an email. “Patients all over the United States were so lucky to have her there speaking on behalf of all of us! What a fabulous family. One day, she will certainly be a leader of some kind in life sciences.”

Caroline said she was nervous to speak in front of the FDA, but it was something that she felt she had to do.

“I was really nervous because there were a lot of people who have been through years and years of school and I didn’t want to sound dumb,” she said. “But I wanted to make a difference. I wanted to make a difference for other people, other teenagers, other kids, that couldn’t be there to speak, that didn’t have the opportunity.”

The advisory panel ultimately voted to send a recommendation for approval of the CGM to dose insulin to the FDA. And while many insurance providers cover the CGM, it is the hope of Close and the Dorns that with the FDA’s approval the CGM will now be covered by Medicare, which it currently is not. While Caroline said she doesn’t want her diabetes to be obvious, she says she accepts that it is a part of her, as much as her brown hair and the glasses she wears. She also said that she draws motivation for her advocacy from friends with diabetes.

“I have several friends who make dangerous decisions every day because they don’t want their diabetes to be obvious. They don’t prick their finger, or they prick their finger with dirty hands and that affects the reading. And then they make a dosing decision based on that and then they’re too low or too high,” Caroline said. “It’s scary for me knowing that I have friends who could end up in the hospital any day and not make it.”

And for Caroline and Alice Dorn, education is the key to stopping these kinds of things from happening.

“There is a stigma associated with diabetes and the media in particular,” Alice Dorn said, citing a Facebook post last year depicting a a can of soda with “#diabetes,” that caused an uproar in the Type 1 diabetic community.

“What a lot of people don’t understand or remember is that Type 1 is an autoimmune disorder,” Alice Dorn said. “

“It was going to happen no matter what my diet was,” Caroline added.

Caroline and Alice Dorn’s proactive approach to diabetes education did not end with her FDA advisory panel presentation.

Before school each year, the mother-daughter pair sit down with all of Caroline’s teachers and provide informational packets with educational materials including an explanation of symptoms of high or low blood sugar levels and how to respond, emergency contacts and even a crash course of information teachers can leave for substitutes in their absence.

Caroline and Alice Dorn discuss everything from seating arrangements, to alarm sounds from her monitor or pump, to testing her blood sugar before taking a test. Alice Dorn said that while each step is just another layer of protection for Caroline, it is also an opportunity to educate others.

Living with diabetes is something Caroline said has shaped the direction she wants her life to take.

“I want to be a pediatric endocrinologist or a nurse practitioner with a specialty in pediatric endocrinology because when you get diagnosed as a child you have somebody there who understands,” Caroline said. “My doctor is great, and I love him, but he doesn’t have type 1. He couldn’t tell me what it’s like to live with it everyday, that’s what I think is important.”

For more information about the foundation, visit diatribe.org/foundation.

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