The Boston-based College Diabetes Network (CDN) has literally changed the world for young people heading to college with type 1 diabetes over the last decade.

They’ve created an expansive network of 150 affiliated support groups and reams of resources never available before.

And now, in a first-of-its-kind collaboration, CDN is launching a new initiative to directly inform college administrators and leaders about the challenges of diabetes and get them involved in supporting those students.

Known as CDN REACH, this new multi-year campaign convenes an impressive roster of diabetes, health, and higher education groups to tackle important issues that students with diabetes face on college campuses across the country. Those issues include mental health related to diabetes, assuring access to smartphone CGM data in class and during exams, and things like mitigating liability on intervening during severe hypoglycemia episodes.

The aim is to raise awareness about this chronic condition and strengthen how colleges think about diabetes within the campus culture.

This new initiative comes just as the nonprofit organization marks its 10-year anniversary in 2020. CDN founder Christina Roth, a type 1 herself since age 14, says the organization is now focused on building on its first decade of experience and networking with campus officials and others within the diabetes and healthcare fields, while digging deeper on the areas it sees as the most important in helping young adults navigate college life and transition into “adulting.”

Christina Roth

“We’ve been building toward this for a long time, and now we’re taking the lead to help campuses address those persistent barriers that students continue to face in college,” Roth says.

“There has never been an ask like this, as to diabetes in the higher education community. We can use this as a tool to change the culture, reducing risks that students with diabetes face and creating a template for administrators to use for other chronic conditions.”

When CDN began a decade ago, the org’s mission was about helping students self-advocate and deal with various issues encountered on college campuses. But now in 2020, they’ve established relationships at a higher level and are better equipped to bridge the systematic gaps that exist in diabetes and higher ed.

That’s where CDN REACH comes in.

First launched in November during Diabetes Awareness Month in preparation for a full rollout at the start of this year, CDN REACH is about providing an infrastructure of resources for both administrators and students with diabetes (SWDs) to address challenges they may face.

“That concept of working directly with administrators to make life better for students with diabetes is part of the holy grail for us,” Roth says. “So much of what we do is helping young adults self-advocate when they run into issues. That’s so inevitable and happens so often, and this takes it to the next level for us.”

In mid-January, CDN released a video trailer introducing the new REACH initiative.

Roth says this effort dates back to 2016, when the group held its first summit with college administrators to discuss the biggest issues facing students with diabetes.

That led to a pilot program including educational materials that campus officials and CDN chapters could share. It initially targeted health and disability and counseling centers on 22 campuses, using an IRB researcher to analyze the data that came from that pilot. Afterward, Roth says the group realized that this was bigger than just educational resources; it needed to be a full-fledged multi-year campaign.

“We needed a way to help not just the administrators and educators on the ground, but also impact the leadership of universities… on why they should care,” Roth says. “Administrators have the best of intentions and want to support our students, but they really need that roadmap as to how to do that.”

While there are many challenges related to diabetes in college life, CDN REACH will initially focus on these two:

Mitigating liability. Unfortunately, one of the main focuses for college administrators is avoiding any litigation that might result from interacting with students with diabetes. For example, they could be sued for “interfering” if a student has a severe hypo in a classroom or anywhere on campus, or if a student is barred from using a smartphone for diabetes management during class or an exam. They could also run into trouble with their policies around health-related absences and issues tied to injecting insulin or glucagon on campus.

Mental health. Awareness of the overall issue of mental health has become a major point of focus for universities in recent years. People with chronic conditions and those with diabetes are especially prone; CDN’s own 2017 research shows that 57 percent of young adults with diabetes saw increased depression since starting college.

“We have to speak to (administrators) in the framework they understand, and in doing that, diabetes has become the poster child for chronic illness and invisible diseases,” Roth says. “This allows us to convey a better message on diabetes that they understand, and as you look at bigger impact of this initiative, the template we’re creating for campuses here can be used as a template for other disease states in the future.”

So far, CDN REACH has created three new resource guides for campus professionals, available for free digital download at the CDN website. They address best practices for handling diabetes in student health services, student disability services, and student counseling services.

There is also a limited number of hard copy materials available to order (while supplies last).

CDN plans to connect with 2,500 campuses initially, with the help of a broad coalition of nonprofit advocacy partners:

  • American Association of Diabetes Educators (AADE)
  • American College Health Association (ACHA)
  • American Diabetes Association (ADA)
  • Association on Higher Education and Disability (AHEAD)
  • JDRF
  • Beyond Type 1 and Beyond Type 2
  • Children with Diabetes (CWD)
  • diaTribe Foundation
  • Diabetes Patient Advocacy Coalition (DPAC)
  • Mary Christie Foundation
  • National Certification Board of Diabetes Educators (NCBDE)
  • National Diabetes Volunteer Leadership Council (NDVLC)
  • Student Affairs Administrators in Higher Education (NASPA)
  • Taking Control of Your Diabetes (TCOYD)

CDN will host these partners at an upcoming leadership summit in spring 2020, with the aim of establishing consensus on how universities should handle severe hypo intervention and access to CGM smartphone data in classrooms and during exams.

“This is a massive campaign, and we’re looking at it almost like a matrix,” Roth says. “We’re focusing on breadth. Our plan is to blanket the higher ed community with resources and explain why this is important. As we get deeper and go past 2020, we’ll be able to use those relationships and our collective knowledge base to then dig into and identify specific campuses to focus on.”

CDN has not only changed life on campus for students with diabetes, but is actually helping to mentor a new wave of young leaders.

The group’s backbone is the existing 150 affiliated chapters on college campuses across the country. But Roth estimates they have an additional 125 “unaffiliated chapters” — where someone is exploring or pursuing the creation of a CDN chapter on a campus that’s not yet officially recognized.

That encompasses 150 to 300 active student leaders with diabetes at any given time, and Roth says roughly 80 percent of those SWDs go on to some professional role in the diabetes space.

To nurture this, CDN brings on student interns each summer and offers scholarships for SWDs to attend both college and national diabetes conferences.

In 2020, they plan to welcome 18 young adults from across the country to various events to network, learn, advocate, and experience professional environments. After that, CDN matches each student with a mentor in their particular field of interest to help them lay a foundation for going into that area.

For Roth, reflecting on all of this still boggles her mind. As recently as 2009, students with diabetes were left to fend for themselves in college, without a peer or resource in sight. Today, if you or your child with diabetes needs help with any aspect of college life, all you have to do is google “CDN.”

“I’m struggling to articulate and reflect on the process and impact,” Roth says. “It’s incredible where we’ve been able to go. It’s a complete testament to the community support. We wouldn’t be here today without them.”