For years, college students were overlooked within the diabetes community. Now, a peer-to-peer network is filling the void.
When Christina Roth arrived on the UMass Amherst campus in the fall of 2007, there was no guide for how to be a college student with Type 1 diabetes. She was working with a new pump and struggling with burnout from the day-to-day management of her disease.
When she contracted Lyme disease, the health center connected her with a nurse who had been managing her own Type 1 diabetes for over 30 years and understood the challenges involved. In addition to treating her Lyme disease, the nurse talked to Roth about reaching out to others who were experiencing similar frustrations associated with Type 1 diabetes on campus.
“All the students I see feel the exact same kind of burn out,” she told Roth. “They’re not in touch with anyone, but they want to be.”
It was the first time since her diabetes diagnosis at age 14 that Roth was receptive to the idea of being a part of a group focused specifically on diabetes.
“I’d never thought of myself as someone who wanted to connect with someone else with this disease,” she said. “I didn’t want that to be what connected me to somebody.”
But on campus, she was tired of feeling alone as a college student with diabetes. Through the nurse, Roth was able to get 11 students with Type 1 diabetes together for a meeting.
“Coming out of it, I had this unbelievable sense of empowerment,” she said. “It was such a different way to look at diabetes and how I was motivated around it. It wasn’t this negative disease that I’m dealing with alone — they were going through the same things and felt the same way. We were able to laugh about living with diabetes. It was so freeing to be able to look at it in a different way.”
Roth left that first meeting excited to spread the word. She set up a website for fellow UMass Amherst students with Type 1 diabetes to organize and meet up. Because this was the early days of the internet and there was a dearth of resources on managing diabetes as a college student, Roth’s page started getting hits from across the country. Anyone searching for “college” and “diabetes” saw the page as one of the top search results.
Other students started reaching out to Roth, either to let her know about the chapters that they had started independently on their own campuses, to ask about how to get a chapter off the ground, or just to talk.
This was the genesis of the College Diabetes Network, a national non-profit organization that now has 85 affiliated chapters spanning the country, with 30 in developing stages of affiliation. CDN is the leading peer-to-peer support network for the over 50,000 American college students managing their diabetes on campus.
“The young adults on college campuses don’t want to listen to doctors,” Roth said. “They don’t want to listen to parents. They don’t want that top down approach. It’s an exploratory time about learning from each other and figuring it out.”
The Boston-based network provides an institutional backbone for the student-run chapters on campus; they are also a hub for information, resources, and support for young adults with diabetes. It allows chapters to provide whatever services best suit the community on campus. Most chapters hold meetings that give members the chance to have honest conversations about college life with diabetes. Others participate in diabetes activism or bring in speakers to talk to their members.
The launch of CDN coincided with the first online communities where people talked about health issues, including diabetes. Roth didn’t market the network; it spread organically through word of mouth.
In the early years, Roth knew what each of the organizations was up to. Now, there are so many chapters that she is mostly aware of what they do in aggregate.
“It’s really nice,” she said, “because you can just step back and see the ripple effect.”
Dawgs for Diabetes, the University of Georgia chapter, puts on an annual off to college day that students and parents from across the state attend. In addition to providing practical information about managing diabetes on campus, the event also gives incoming students and their parents a chance to see other students with diabetes who are not only successful but also happy.
Riley Jenkins, a rising junior at UGA and the incoming president of Dawgs for Diabetes, led tours for last year’s off to college day.
“I really felt the positive impact it had on the high school students and their parents,” Jenkins said. “I wish I’d had this kind of tour when I was a rising freshman.”
Even without a campus tour, all chapters provide a crucial passing down of institutional knowledge that didn’t exist before CDN.
“Before CDN, it was a black hole for students coming on to campus,” Roth said. “So many students with diabetes went through college, and they were all experts by the end. CDN harnesses the information from those self-practices and makes it accessible for students from the beginning. The combination of resources and support are making the process clearer and more transparent.”
Across the country at the University of California Merced, the UC system’s newest school, Alondra Zambrano founded the CDN chapter United Pancreas last fall. She served as chapter president for the year and will continue leading the chapter through her senior year.
“Before creating the CDN chapter, I was struggling,” Zambrano said. “It was already a difficult transition from high school to college, but it was especially difficult with diabetes. But being involved with CDN has made me more comfortable about being open about my diabetes. I’m grateful to be a part of CDN, and thankful for the whole CDN staff because my college experience wouldn’t be the way it is today without them.”
Helping students feel comfortable and open about their diabetes is one of CDN’s goals. Only about half of students surveyed by CDN and the Association on Higher Education and Disabilities registered for accommodations, like being able to eat during class or test blood glucose levels during an exam. Of the 46 percent who didn’t register, 68 percent wished they had.
“At the campus level, talking about diabetes is a double edged sword,” Roth said. “You want to, on one end, show how normal you are and that there’s no need to discriminate. That you can do everything just as anyone else can, that diabetes does not limit who you are. On the other side, you want to be honest about how hard it is, that is it life and death, and that support is needed. Diabetes is the only disease where a hormone that could kill you is given without doctor supervision, and the patient is entirely responsible. There’s this misconception with diabetes that you take insulin and you’re cured. It’s so much more complicated than that.”
The answer, as always, lies in the middle. Which is where Roth found herself as she was finishing up her senior year, having applied for nonprofit status and waiting for someone with experience in nonprofits or foundations to pick it up.
Roth didn’t have experience in business and, at the time, couldn’t envision herself as a CEO. But graduation rolled around in the spring of 2011, and no one had stepped up to run the network.
After graduating, she stuck to her original career plan, working as a research assistant at the Joslin Diabetes Center in one of the best endocrinology labs in the country, hoping to use the job as a stepping-stone to a PhD program.
But she hadn’t given up on the idea of the College Diabetes Network either. She worked an unofficial second job from 5 - 10 p.m. job running the network with Jo Treitman, a coworker and friend. They used their vacation time to attend conferences.
After a year, it was clear that working two full time jobs was too much. They set an ultimatum: if the network wasn’t off the ground in six months, they would figure something else out.
In 2012, they quit their day jobs and went full time volunteer.
“As someone who has lived through diabetes,” Roth said, “I felt so strongly that the peer aspect was what made it successful. I would not be able to have the same impact if I went into a research career. Through CDN, we are able to take a more comprehensive and sustainable view of the challenges young adults face and work to solve them instead of just publishing on them.”
Within the first six months, Novo Nordisk, a multinational pharmaceutical company that makes diabetes care products, gave them their first grant. Every year since, they have doubled in revenue and chapter size. Now, the network provides chapters with stipends and grants up to $500 to help them put on programming and hosts an annual retreat. This May, CDN won the 2016 New England Innovation Award by the Smaller Business Association of New England for their work improving the lives of college students with diabetes.
Looking ahead, Roth is excited for the future of the organization.
“We’re just getting started,” she said.
To learn more about the College Diabetes Network, visit https://collegediabetesnetwork.org.