Skip to main content

Cottonwood Heights Journal

Fifth grader knows the need for insulin; she lobbies legislators to make it affordable

May 09, 2024 02:01PM ● By Julie Slama

Canyon View fifth-grader Liviana Ramirez shakes Sen. Mitt Romney’s hand when she, and other Utah youth delegates, asked him to support affordable insulin for diabetes. (Photo courtesy of Julie Ramirez)

Ten-year-old Liviana Ramirez has plans for May 18. 

The Canyon View fifth-grader plans to be at The Shops at South Town in Sandy to raise awareness and money and take part in the Juvenile Diabetes Research Foundation One Walk, the largest global event for type 1 diabetes. It’s being held in multiple locations.

Liviana is an advocate for affordable insulin for those who have type 1 diabetes, like herself. She has made videos, lobbied legislators and speaks out to bring awareness to the autoimmune disease.

“I used to have to get three shots every day at every meal and we’d have to figure out what kind of dosages I’d need because you never know what’s going to happen with diabetes,” she said.

Instead of regular shots, Liviana now wears a Omnipod, which provides nonstop insulin delivery through a tubeless insulin pump. 

“I don’t have to deal with the shots every single day. Instead, it’s one shot that delivers insulin every three days,” she said. 

Liviana uses a cell phone to swiftly read her body’s continuous glucose monitor, which she uses to watch her glucose levels. Her mother can track it as well.

“With this, there’s no more poking my finger for learning my blood sugar; that’s even worse than shots,” she said.

Liviana has been diagnosed for almost three years.

“It’s not clear what causes type 1 diabetes,” her mother, Julie, said. “But we’ve learned that symptoms can start quickly.”

Liviana remembers, “I was hungry and thirsty. I was going to the bathroom a lot, but it was summertime, and it was hot. Then, it got worse and I was always tired and was in a bad mood.”

When her mother noted her then 8-year-old daughter wasn’t her “happy self,” she read an article about another child who had the same symptoms and was diagnosed with type 1 diabetes.

“She’d wake up, hot and sweating,” her mother said. “Livi was so skinny, but she was skinny anyway, I’d tell myself. But I was watching her, like any mother would when they notice something wrong. When I read that article, I knew we needed to get her tested. I knew they were going to say she was diabetic.”

Liviana remembers that it was after summer camp, she went to the doctor.

“They poked my finger and came back and said I needed to go to the ER (emergency room) immediately,” she said.

Her mother said her daughter had a diabetic ketoacidosis, a complication of diabetes when the body can’t produce enough insulin and the acids build up in the blood to levels that can be life-threatening.

Like most people, Liviana was lethargic, tired and weak, all symptoms of needing more fluids, insulin and electrolytes. Without treatment, diabetic ketoacidosis can lead to loss of consciousness and death.

“We took her, it was a shock, in denial,” her mother said. “I knew what type 2 diabetes was, but I didn’t know type 1, where her immune system attacks her pancreas and kills the cells that turn sugar into energy. It’s an autoimmune disease. It’s not caused by being unhealthy. That’s a misconception.”

Learning to manage type 1 diabetes is ongoing, they quickly realized.

“When we got to the ER, the endocrinologist explained to us that she would most likely be in the ‘honeymoon phase,’ because once her body starts getting insulin introduced, it feels as it can work. But it’s random,” her mother said. “That stage can last anytime from two weeks or two years, but once you get out the honeymoon phase, you need more insulin, basically. But it’s not as simple as that.”

She said that with long-acting insulin that keeps her daughter’s blood sugar down, she needs to have fast-acting insulin within typically, an hour. 

“It depends on the types of food as to how fast she needs it. So you’re basically guessing how much you need,” her mother said. “You think, she needs this many carbs for a unit of insulin. But then you give her the insulin and her pancreas kicks it out, so it can drop randomly. That can be scary.”

Liviana doesn’t flinch as her mother outlines the procedure. She knows she’s constantly walking a fine line, trying to balance so her blood sugar doesn’t go too low or too high. It’s something she will live with her whole life.

“Sometimes, I completely forget about my diabetes, and I do kid stuff. But living with type 1 diabetes is like living with constant interruptions and I have to stop all that fun to do something like check my blood sugar or be woken up in the night to get a shot,” she said. “But it’s good that I have the ability to monitor my blood sugar. Sometimes, I forget how hungry I am. After I get insulin, I get food and start feeling a little better.”

When insulin was first invented, it was “priced at $1 because the person who invented it believed that everybody should be able to get it,” her mother said, adding that now it can cost upward of $300 per month.

That’s why Liviana and about 160 other youth representing the Juvenile Diabetes Research Foundation delegates traveled to Washington, D.C. to talk to lawmakers about the Affordable Insulin Act. 

She was one of three youth from Utah; they shared their stories and talked with Sen. Mitt Romney about the importance of affordable insulin. They later met with Sen. Mike Lee and Rep. John Curtis in Utah.

“I told them diabetes is a 24/7, 365 days. I know it depends on insurance, but they can put a $35 cap on it to make it affordable and accessible for everyone. It’s literally lifesaving medicine for us,” she said. “I talk about it because I wanted to make a difference for thousands of people. It’s important to make an impact on the world. It’s a simple thing. I want the world to be at a better place so I’m willing to put in the effort.”

It’s not just the insulin that costs her family. While with insurance, Liviana’s insulin is about $70 per month; her pump is $850 a month and her Dexcom CGM, another $350 a month—and so on.

The trip to Washington, D.C. wasn’t without worry as travel impacts Liviana’s diabetes. She spent half of a day in the hotel room trying to stabilize her blood sugar levels.

“It happens any time. It could be 10 o’clock, and Livi’s blood sugar is messed up from dinner, because careful as you try to be, it’s still food and that can impact her, and it can be the emotions from the food that change with her blood sugar. It can change with exercise. If she’s hot or cold or super stressed for a test—it’s just unpredictable. It can be hormones when she reaches her teenage years,” her mother said, adding that it was scary for her during the COVID-19 pandemic.

While her mother admits she’ll always worry, she knows Liviana regularly checks her levels and her teacher is trained and has experience taking care of diabetics.

“Before she leaves the house, we make sure she has the supplies she needs,” her mother said. 

That includes a bag to keep insulin cool, candy for lows, needle tips, PDM or remote control device for her pump, back-up pods, and Glucogan in case she has a hypoglycemic event and can be administered immediately to bring up blood sugar levels.

The fifth-grader who loves to read books and create roleplays from them and is gifted at writing —she’s currently writing her first novel—is mature beyond her years.“I feel like I’m more resilient with getting type 1 diabetes, because I already have to deal with having cochlear implants and had to relearn the sounds I lost when I was little,” she said. “When I was younger, my mom used to sign (ASL) with me all the time. I was good at that, but the more I got used to cochlear implants and talking, I lost a little bit of that language. I’m working on it and since my dad’s from Guatemala, I’m learning Spanish.”

Liviana is sophisticated in her knowledge of medical terminology, but she currently doesn’t want to be a doctor.

“I was thinking my goal is to be president, but I still have time to decide; I want to make things better,” she said.

Her mother said her daughter is all “girl power.”

“Livi’s out there, fighting to help, whether it’s diabetes, deaf people, women’s rights. She’s just so fierce about the things that she advocates for. She has learned her words are powerful,” she said.

Liviana looks back at photos of when she got her first insulin shot.

“Every so often I look back on it and think how lucky I am to be alive and to have all this technology,” she said. “It’s just amazing.” λ