More than 7,500 students with Type 1 diabetes enter college every year, and the number is only growing. At the University of Iowa, a student organization called Diabetes Link is working to support students with the disease, but they say it’s become harder to build that community.
“I think there’s more people [with diabetes], but I think the communities have lost numbers, especially because of COVID,” Sophia Karthik, secretary at Diabetes Link, said. “I think COVID separated us from our communities, and no one really went back to them after the fact, and so [Diabetes Link] is trying to rebuild that connection.”
Type 1 diabetes is an autoimmune disorder that impacts more than 2 million people across the U.S. The disease develops when a person’s immune system attacks certain cells in their pancreas, making it impossible for them to digest energy from carbohydrates without artificial insulin.
Unlike Type 2 diabetes, Type 1 diabetes is genetic, and it’s increasing in young people for reasons scientists have not yet identified. Naina Miranda, vice president of Diabetes Link, said the disease requires constant management. She said having a constantly changing routine in college is just one of the challenges college students with Type 1 diabetes face.
People with Type 1 diabetes must give themselves insulin before every meal containing carbohydrates. Most people have three meals a day, but if that schedule shifts, it could impact that person’s health. If it’s not managed well, it could lead to further health complications or, in extreme cases, death.
The burden Type 1 diabetics face is softened, she said, by organizations like Diabetes Link through its ability to create community. Organizations like Diabetes Link are spreading to campuses across the country.
The College Diabetes Network, which created Diabetes Link at Iowa, has grown to over 20 chapters.
The closest chapter to the UI is at the University of Wisconsin, and the farthest reaches the University of San Diego.
Despite these organizations, Miranda said many people with Type 1 diabetes don’t seek out other people.
Palin Narsian is the treasurer for Diabetes Link and said the transition to college as a Type 1 diabetic was challenging, and finding his community greatly impacted his experience at the UI.
“The main thing is just realizing that you’re not alone, and you’re not dealing with it by yourself because a lot of times in your day-to-day life, you’re not gonna meet people with diabetes. A lot of people don’t understand the consequences of it and just how prevalent it is in our lives,” Narsian said.
People with Type 1 diabetes face many challenges, including increased doctor visits, constant blood sugar management, and obtaining increasingly expensive insulin.
The annual insulin price from 2014 to 2019 rose from $3,819 to $5,917 for a month’s worth of insulin for individuals without insurance. Since 2019, there have been efforts to cap the price of insulin at $30, but that is only a solution for access if insulin is in stock.
Karthik said she needed to borrow insulin from Miranda last year because there was a nationwide shortage of the drug. Insulin shortages and high prices have caused millions to ration their own medication, which is not only unhealthy but can eventually lead to a Type 1 diabetic’s death.
At least five people died in 2019 from insulin rationing, though that number is likely much greater because insulin rationing deaths are seldom reported.
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Karthik said getting appointments for insulin refills is vital, and she said the wait time to meet with her endocrinologist at UI Health Care has increased to a year, which makes getting those refills harder.
“Right now, it’s a very long wait. I’m not really used to it. Usually, there is a long wait. Generally everywhere else, like the Des Moines area, it’s usually like six months, but this is double that,” Karthik said.
All three Diabetes Link members said having someone to talk to about their disease is what makes their organization meaningful.
Miranda said the group hosts informal events to get people in the same room together and bond over their shared experiences. She said their most recent event was pumpkin painting, but it has been hard to get many people on campus to attend.
She said she hopes people with the disease will come to find community in the future because while living with Type 1 diabetes is challenging, it is easier when there are people around for support.
“Coming to college, it’s like everything’s reset,” Narsian said. “With the Diabetes Link, you have people that have gone through a couple years in college, you know you’re not completely alone, so it helps you build that support system again.”
The organization is planning their next event involving a speaker from Camp Hertko Hollow, which is specifically for children with Type 1 diabetes, on Feb. 18.