Diabetes Challenges, the Search for a Cure, and How to Help

Watch the full presentation T1D Management: Revolutionized, but Challenges Remain.

A revolution is underway in diabetes technology and treatments, and potentially groundbreaking new advances toward a cure are coming into focus. 

But people with diabetes know that staying healthy while juggling the demands of everyday life is hard work. Amid the hopeful future and breakneck pace of new discoveries, how can people with diabetes get the care and support they need?

Experts from the type 1 diabetes community, some of whom have diabetes themselves, recently gathered for a live diaTribe Musings panel to speak about their personal experiences and provide insights on challenges around mental health, getting good sleep, the effect of hormones, accessing new therapies, and advancing research for a cure. 

Moderated by Julie Heverly, senior director of the Time in Range Coalition, the panel included:

• Philly De Piante, director of international insights for dQ&A, who shared research on the perspectives of people with diabetes as well as her own experience living with type 1.
• Dr. Jennifer Sherr, a pediatric endocrinologist at the Yale University School of Medicine, who talked about insights from her research studies, working with patients, and her life with type 1. 
• Dr. Osagie Ebekozien, chief medical officer of T1D Exchange, who provided his perspective as a physician, public health expert, and advocate for people with diabetes.

A call for more mental health support 

People with type 1 diabetes have to make 180 extra decisions each day related to managing their disease, on top of dealing with the 42 factors that affect blood sugar, said Julie Heverly.

dQ&A’s De Piante shared that a quarter of survey respondents in the type 1 community report that they suffer burnout from the work needed to manage their diabetes. 

"That's definitely something I have felt," said De Piante, who has type 1 diabetes. "Beyond that, we see about a third report poor emotional well-being. And nearly 15% feel some sort of sense of loneliness or isolation." 

Dr. Ebekozien from T1D Exchange said that practitioners are keenly aware people with diabetes face mental health challenges and want to offer assistance, but in many cases are unsure how to connect them with the appropriate resources to get support.

"That's something we're working on with the clinical community – what those pathways for referral look like," Ebekozien said. "We don't have enough mental health professionals, so one of the things I'm hoping that we can emphasize as a community is advocating for more resources to take care of the mental health aspect of type 1 diabetes." 

Dealing with hypoglycemia: an ongoing fight

Dr. Sherr recently led a study about the impact of severe hypoglycemic events and impaired awareness that people with diabetes face despite major technological advances, including continuous glucose monitoring (CGM) and automated insulin delivery (AID) systems. 

Sherr described her own experience dealing with low blood sugar events and how technology has helped. 

"I went on an AID and thought, 'Oh my gosh, that's what sleep is.' I was shocked to learn what it's like to feel rested," Sherr said.

However, challenges remain. The study found that while CGM helped reduce severe hypoglycemia events (which require assistance from another person), they did not eliminate them. About a third of the people in the study (33%) who did not use CGM had a severe hypoglycemic event. Those numbers were cut in half for those using CGM, with about 16% experiencing a severe low blood sugar event. 

Roughly 30% of people, regardless of the way insulin was delivered or if glucose monitoring was used, experienced hypoglycemic unawareness. Sherr advised those who don't perceive symptoms of low blood sugar – like rapid heartbeat, jitteriness, and sleep disturbances, which are caused by a release of adrenaline – to talk to their physician and come up with an individual plan to address the lack of physical response that prompts intervention.

Gaining access to breakthrough new therapies

Recent research has shown that adjunctive therapies like GLP-1 receptor agonists and SGLT-2 inhibitors provide weight loss benefits, reduce insulin resistance, and lower the risk of chronic kidney and cardiovascular disease. 

Yet, none of these drugs are approved for use in people with type 1 diabetes. Until recently, there has been a lack of research involving people with type 1 diabetes to establish whether the benefits outweigh elevated risks, which can include hypoglycemia and diabetic ketoacidosis.

"There are ongoing studies exclusively for type 1 and GIP and GLP-1 receptor agonists," Ebekozien said. "We'll see how those unfold, but some of the real-world studies have shown huge improvements in not just glycemic outcomes but even in some of the comorbidities we're paying attention to."

Sherr pointed to recent research from the Barbara Davis Center for Diabetes showing how these drugs can reduce insulin doses, improve blood sugar levels, and help with weight management. 

While there needs to be more prospective, long-term studies with newer agents so that people with type 1 diabetes can get access to these drug therapies, Sherr said, there are many independent academic investigators looking at their potential benefits for type 1 diabetes – including in young adults. 

She said one drug manufacturer is currently seeking FDA approval for an oral SGLT-1/2 inhibitor as an adjunct to insulin agent to help improve blood sugar levels in people with type 1 diabetes who also have chronic kidney disease, potentially paving the way forward to allow access to these treatments for the type 1 community. She also said that research on oral SGLT-2 drugs taken once daily appears promising, including a study examining the potential benefits for people with type 1 diabetes who have chronic kidney disease.

"I've been on position papers calling on the industry to do these studies," Sherr said. "We deserve access to these therapies."

Women's health issues overlooked

The panelists also discussed the difficulties of glucose management during menstrual cycles, as well as other hormonal challenges in adults and teens.  

Sherr said that some of her colleagues are studying insulin sensitivity during different phases of the cycle and other studies have demonstrated blood sugar levels rise before menstruation. This knowledge could lead to better algorithms for AID systems to address these blood sugar changes, she added.

De Piante relayed her own experience with the infrequently discussed issue of polycystic ovarian syndrome in people with type 1 diabetes.

"It's just incredibly challenging, and it adds yet again another layer [to] things you're already dealing with – the PMS pieces, and you're incredibly insulin resistant, and blood sugar is up and down," she said. 

De Piante called for increased access to GLP-1 and SGLT-2 drugs to address some of these challenges. 

"I am hoping for better use of adjunctive therapies, and more information, research, and greater involvement in clinical trials," she said. "There are so many of us living with another comorbidity – another piece to the puzzle."

Being part of the next breakthrough

The panelists pointed to the many currently available clinical trial opportunities for people with diabetes to have an impact on future care, and potentially one day, a cure.

"It's a multi-layered piece, but we can do something today," Ebekozien said. "Collectively we can push this conversation forward, and I'm very optimistic that five years from now, 10 years from now — even next year — will be so much better than where we are today because we've seen huge progress."

Sherr talked about how she and other researchers are committed to making sure that trial requirements aren't overly burdensome by reaching out to people with diabetes directly to ask what they're comfortable with. She recommended visiting clinicaltrials.gov and searching for "type 1 diabetes" to see what trials might be of interest in your area.

Sherr referred to a pediatric study she conducted for nasal glucagon, and how children who participated in trials express pride that they contributed to a potentially life-saving treatment. 

"Those kids come back and say, 'I did that.' And they did. It's about getting to that next breakthrough," she said. 

Want to learn more about clinical trials and how to participate? These studies are currently recruiting:

• Join the Vertex VX-264 Trial Testing a Potential Cure for Type 1 Diabetes
• New Trial Tests Ozempic For Kidney Disease in Type 1
• Trial Researching New Treatment for Kidney Disease in Type 1 Diabetes

If you would like to participate in dQ&A’s research and share about your experience with diabetes, please click here. They are especially interested in meeting more parents and caregivers of children with type 1 diabetes.