Theresa Hastings is one of the growing number of people with type 1 diabetes (T1D) who have experienced the benefits of GLP-1 agonists, currently FDA-approved only for those with type 2 diabetes (T2D) and obesity, and want to see access expanded. 

“I refuse to stop taking it because of the benefits it has on my blood sugar and time in range,” she said. “The benefits of slowed digestion, curbed appetite, and increased insulin sensitivity, as well as potential heart health, make it an incredibly valuable tool.” 

GLP-1s (or glucagon-like peptide-1 receptor agonists) are a class of mostly injectable medications that help to lower glucose levels  and promote weight loss by:  

  • Increasing insulin sensitivity 
  • Decreasing glucose production in the liver 
  • Slowing digestion 
  • Suppressing hunger 

 

A handful of GLP-1s are on the market, including Novo Nordisk’s Ozempic® (semaglutide), which has gained wide popularity as a weight loss drug, as well as Mounjaro® by Lilly, the only dual GLP-1/GIP agonist. 

Clinical studies are underway to determine the safety and effectiveness of these drugs for those living with T1D. Early results show reductions in insulin requirements, A1C, and body weight without increasing the risk of hypoglycemia (low glucose) events. Research is ongoing. 

Hastings, a resident of Charlotte, North Carolina, who has lived with T1D for 25 years, was an early convert, starting on the daily-dose Victoza in 2013 on the recommendation of her endocrinologist. “I switched to Trulicity for the once-a-week dosing,” Hastings recalled. “Then to Ozempic as an attempt to ease the GI side effects. Ozempic was perfect for me. I briefly tried Mounjaro after hearing rave reviews from other type 1s, but the same gastrointestinal side effects I had on Trulicity reappeared, so I went back to Ozempic.” 

Now, with the combination of Ozempic and her DIY app Trio, Hastings said she maintains 85%-95% time in range. “I think any type 1 who wants to use it should be allowed without the current insurance battle for coverage,” said Hastings, who said she’s been lucky to keep her coverage as a maintenance medication. 

 

Navigating insurance barriers 

The lack of insurance options for many living with T1D who desire access to GLP-1s remains a significant barrier to access, even when BMI standards are met. This means many are unable or struggle to afford these medications. Those denied insurance coverage when seeking a GLP-1, even when they have a prescription, should know there are ways to appeal.  

Cherise Shockley, a diabetes patient advocate in the greater Indianapolis area and founder of Diabetes Social Media Advocacy, is among those who have been shut out by insurance. She experienced the real benefits of Byduerion BCise, a GLP-1 made by AstraZeneca, for two years until her insurance changed. 

Without the medication, her diabetes management has become more challenging, she said. “Being on Byduerion BCise made a significant difference for me,” Shockley recalled. “My time in range increased, I had no issues with insulin resistance, and, as a bonus, I lost weight. I didn’t experience too many lows because I made sure to adjust my insulin pump settings as needed.” 

Using a GLP-1 was “a game-changer,” Shockley said. “I keep hearing about studies on the benefits of GLP-1s for people with type 1 diabetes. We know more studies and data will get us closer to prescribing GLP-1s and hopefully decrease the number of denials and off-label use.” 

 

Emerging awareness of GLP-1s among T1D 

Despite these kinds of success stories and increasing research with encouraging findings, many in the T1D community remain unaware of these medications or cannot access them, according to the results of a recent T1D Exchange survey asking if people living with T1D were using a GLP-1.  

Most respondents, about 75 percent, said they were not taking one, with about one out of 10 unaware of the class of medication. Of the minority who reported using one, 13 percent said their healthcare provider suggested it, and less than 10 percent said they had asked. 

Haley Brennan, 33, a Manhattan-based blogger who has lived with T1D for 17 years, started using Ozempic 18 months ago at the suggestion of her provider.  

“At one point, I was having such insulin sensitivity that I felt like I had no control,” Brennan said. “It took some time to see improvements, but my time in range did increase, and my overall numbers looked much better. At first, I did experience a lot of lows, though, which was scary. They also felt like they took longer to recover from.” 

 

Encouraging data from recent studies  

The benefits of these medications are becoming increasingly clear. Data from the T1D Exchange Quality Improvement Collaborative (T1DX-QI), which looked at 13 endocrinology clinics across the United States and surveyed 481 people with T1D using a GLP-1, showed an overall reduction in A1C levels from 7.5 to 7.3% with no significant DKA events. 

The study called for more research to “further clarify use, optimal dosing, and potential benefits, including cardiovascular risk reduction” of GLP-1 receptor agonist medications for use in T1D. 

Further, more limited studies show that young adults with T1D may also benefit from GLP-1 in a real-world setting. Still, it suggests that “randomized controlled trials assessing long-term clinical efficacy are warranted.” 

“I think it’s just a matter of time before research shows it is another effective tool in the type 1 diabetes management toolbox and it becomes more widely used,” said Scott Johnson, who started using GLP-1s after relocating his family from Minneapolis to San Diego, where he is now community manager with Blue Circle Health. He said the cross-country move and starting a new job were stressful, and his glucose levels, blood pressure, and weight suffered.  

“I just felt crummy,” Johnson said, explaining that he saw immediate improvement once he started on Victoza. “My time in range increased noticeably. As we worked together to titrate the doses, I started losing weight, which then helped my cholesterol and blood pressure return to healthy ranges.” 

Before long, he switched to Ozempic, and after a brief insurance disruption early this year, he’s been using Mounjaro since April.  

“My blood sugar was remarkably harder to manage when I was without access,” Johnson said. “Once I got back on it, things got easier again. It’s night and day.” 

Johnson noted that his new insurance plan is not as generous but said, “It feels worthwhile for me to continue the therapy. I recognize that I’m extremely privileged and don’t take it for granted.” 

 

GLP-1s as a tool for better overall health 

Since Joanne Milo, 70, author of The Savvy Diabetic blog, asked her endocrinologist for Ozempic in November 2022, she’s dropped 45 pounds and has improved her glucose time range. “Before the GLP-1, I was always hungry and battling weight.” 

However, Milo said the other metabolic and cardiovascular benefits drew her to GLP-1 therapy. Two months ago, she switched to Mounjaro, she said, “as it made sense that adding a GIP could be an improvement,” curious about the extra benefits of adding a glucose-dependent insulinotropic polypeptide to a GLP-1 agonist.  

After living with T1D for nearly 60 years, Milo, who has stage 3 kidney disease, said that her fear of kidney failure was a motivating factor. “It has always made sense to me that if I were missing insulin, I’d also probably be missing many other pancreatic hormones,” she said. “It just makes sense that if we have an autoimmune disease that destroys beta cells, what other cells are destroyed and hormones disrupted?” 

 

Advice for the GLP-1 curious 

GLP-1 users with T1D advise others interested in trying them to take the lowest dose that gives glucose benefits and not to skip daily exercise and a healthy diet. “I think it is a game changer for blood glucose stability, hunger, weight loss, and a sense of well-being,” Milo said, adding that her side effects have been minimal because she started a very low dose and gradually increased. 

“I tapered myself down from the dosage my doctor gave me because I hated not having any appetite whatsoever, plus I wanted to deal with fewer lows,” Brennan agreed. “I eventually found a small dose that worked best for me.” 

Those on a GLP-1 encouraged anyone with T1D who thinks it might help them to talk to their healthcare team about the pros and cons, as well as insurance and cost options. “If you decide to incorporate one into your treatment plan, ask questions, educate yourself,” Shockley said, “and be prepared to adjust your insulin pump settings or the amount of insulin you take via MDI.” 

Johnson remembers the desperation that “every number I knew how to check felt out of whack.” Then, adding a GLP-1, “the immediate beneficial blood sugar results clearly showed that it was helping and is an important piece of the diabetes management puzzle,” he said. “It’s an added bonus that these therapies appear to offer cardiovascular protection and other benefits, too.”