This guest post was written by our friend (and former Diabetes Daily staffer) Maria Muccioli, PhD. Maria is the lead researcher at Thrivable, a leading market research firm that specializes in diabetes patient experiences. Thrivable maintains panels of thousands of real people from the diabetes community to help healthcare organizations deeply understand patient behavior in the market.

Glucagon-like peptide-1 receptor agonists (GLP-1 RAs) are a class of medications approved to manage type 2 diabetes. These drugs, including the well-known semaglutide (Ozempic) and tirzepatide (Mounjaro), enhance insulin secretion and suppress glucagon release, thereby regulating blood glucose levels. They are extraordinarily effective for weight loss and can lead to a decreased reliance on insulin injections or other glucose-lowering medications.

While these pricey drugs seem marvelous for type 2 diabetes and obesity, we wanted to know what people with type 1 diabetes thought. We dove into patients’ experiences and opinions. Leveraging our proprietary patient panel, we explored how patients perceive and experience GLP-1 RAs as tools in diabetes management.

Let’s get into the data. 

High Off-label Use of GLP-1 Drugs by People with Type 1

While GLP-1s have yet to be approved by the FDA for type 1 diabetes management, their use is increasingly common. In our full panel of over 15,000 people with type 1 diabetes, 4.5 percent of adults are using a GLP-1 like Ozempic off-label. 

It is clear that a sizable proportion of people with type 1 diabetes are seeking out these medications. Recent research points to some striking benefits of these therapy options for type 1 diabetes, and notably also in newly diagnosed patients, such as:

Moderate weight loss
Glycemic control
Cholesterol reduction
Treatment safety profile

The members of our panel report similar benefits — many respondents with type 1 diabetes named weight loss, improved blood sugar results, and lower insulin requirements as some of the perks of using a GLP-1. Some choice quotes:

“My A1C is at an all-time low, my blood sugars are in a steady range, and my insulin intake is significantly decreased.”

“Well after years, and I mean years, of a vast amount of diets and exercise to lower my A1C, nothing had any effects. Then this medication changed everything for me.”

“I have lost 40 pounds and my A1C has dropped to 6 percent from 8 percent.”

Of course, not everyone has had such a positive experience. Some users report that their GLP-1 drug has been ineffective or that the side effects (typically gastrointestinal distress) were too much to handle. Others complained that they were unable to afford these drugs, or that they were impossible to find due to shortages.

Ongoing research into the safety and efficacy of GLP-1 RA for type 1 diabetes, coupled with the apparent demand, could turn the type 1 segment into a significant revenue driver.

GLP-1 Users Love Their New Drugs

In a survey of over 800 people with diabetes (conducted in January 2024), 84 percent of people with diabetes who currently use a GLP-1 RA medication reported a very positive or somewhat positive experience. These findings are consistent with previous findings from our 2023 report, where a survey of over 2,000 people with type 2 diabetes also revealed that 84 percent of current GLP-1 RA users were satisfied with their treatment. 

Interestingly, people with type 1 diabetes were even more pleased with their GLP-1 experience than those with type 2 diabetes (86.8 percent and 83.2 percent respectively). And a sizable percentage of our respondents reported being “extremely satisfied” with their current treatment, including:

42.4 percent of Trulicity users
41.8 percent of Ozempic users
51.3 percent of Mounjaro users

 GLP-1 Drugs Create Optimism

The type 1 diabetes community often looks to the future. Glucose management technology has improved in a significant way in recent years, and there are even better CGMs, insulin pumps, and insulins in the development pipeline. At the same time, there’s plenty of skepticism that a cure to the disease — said to be “five years away” for decades — will ever be found.

When we asked our panel, we found something remarkable: Those who currently use a GLP-1 RA treatment were far more likely to have an optimistic view of the future of type 1 diabetes care.

Of those with type 1 diabetes, 41.2 percent of users reported feeling optimistic, compared to just 5.6 percent of non-users. The finding suggests that drugs like Ozempic and Mounjaro are effective enough to meaningfully change the outlook of users. 

GLP-1 Drugs Have Become “Extremely Important” to Users 

Drugs such as Ozempic and Mounjaro are increasingly seen as a first-line treatment for type 2 diabetes; for many people with the condition, a GLP-1 is the most important drug that they take. That will never be the case for those with type 1 diabetes, who still need daily insulin injections or infusions to live.

Nevertheless, when we asked GLP-1 RA users how important these drugs were in their overall management of diabetes, we were surprised by the results. Users with type 1 diabetes were just about as likely (32.8%) to say that their GLP-1 drug was “extremely important” as users with type 2 diabetes (35.6%).

Unsurprisingly, people who do not use these drugs are far less likely (6 times less likely) to call GLP-1s “extremely important” in the management of type 1 diabetes.

GLP-1 users express high satisfaction and show remarkable optimism about the future of diabetes care, emphasizing the importance of these treatments. These findings reinforce the impact of patient perspectives, fueling hope for a more positive and promising diabetes landscape.

Cure Language May Be a Turn-Off

Responding to whether media portrayal of GLP-1 RAs as a cure for diabetes has influenced their expectations regarding their efficacy, 54.7 percent of patients expressed that this was not the case. Those with type 1 diabetes were considerably less likely than those with type 2 to be influenced by “cure language.” While 21.6 percent of those with type 2 diabetes said this type of messaging would alter their perception of efficacy, only 10.2 percent of those with type 1 diabetes stated as such.

Cure language was generally viewed with skepticism and appeared to be a turn-off for some respondents. 

 “Lots of people take the word “cure” literally – and immediately. It has been promised to all diabetics for decades yet has never been delivered,” said one respondent.

Some were more blunt: “Bullshit. It helps manage it but isn’t a cure.”

Ultimately, GLP-1 RAs have been met with overwhelmingly positive sentiment from patients, and may be more effective (and appreciated) by patients with type 1 diabetes than is generally realized. Regardless of media buzz around the potential for “curing” diabetes, most patients maintain reasonable efficacy expectations. We foresee a resilient future for GLP-1s in diabetes care.