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Emergency glucagon is a life-saving medication used to treat severe hypoglycemia (low blood sugar) in people with diabetes—particularly in those who take insulin.
A recent study conducted through a partnership with T1D Exchange and Zealand Pharmaceuticals gathered insights from people with type 1 diabetes on the actual experience of using glucagon and the emotions that may come with it.
About the study participants
Recruited from the T1D Exchange Online Community and Registry, participants were divided into seven focus groups with a total of 38 people with type 1 diabetes. Details about the cohort include:
- 50% identify as female, half as male
- 84% used a continuous glucose monitor (CGM)
- 63% used an insulin pump, 47% used multiple daily injections, 3% used inhaled insulin
- Average participant age: 50 years old
- Average duration of diabetes: 34 years
- Average A1c: 6.8%
What is glucagon?
Glucagon is a hormone produced by the alpha cells in the pancreas. Glucagon tells your liver to release stored sugar (glycogen) into your bloodstream to prevent hypoglycemia. People with T1D have “alpha cell dysfunction”—which means this protective function isn’t working properly.
As a result, people with T1D may need emergency glucagon to trigger the release of stored liver glucose during severe hypoglycemia events, including:
- If you cannot eat or drink (nausea, stomach virus, etc.)
- If you are unresponsive or unconscious
- If you accidentally overdose insulin
Today, emergency glucagon is available in several brands of single-step options including an auto-injection pen and a nasal spray.
- Zegalogue: Auto-injection Pen or Prefilled Syringe (PFS)
- Gvoke: HypoPen or Prefilled Syringe (PFS)
- Baqsimi: (nasal spray)
But the experience of using emergency glucagon is about so much more than staying alive.
Getting glucagon and having it when you need it
It’s easy to assume a person wouldn’t hesitate to get this life-saving medication but this study reveals that the barriers to getting glucagon can easily get in the way.
“Barriers to glucagon utilization have mostly been studied from the perspective of a caregiver of a child or person with T1D or spouse of person with T1D,” explains the study. “This is a significant knowledge gap given that adult persons with T1D are often the ones responsible for acquiring glucagon and training others to administer the emergency glucagon.”
Participants identified common barriers to using glucagon:
- Lack of education on what it’s for
- Paying for it
- Worry over learning how to use it
- Having it nearby when you truly need it
While emergency glucagon was intended to be administered to a person when they are not conscious or capable due to severe hypoglycemia, many participants expressed an interest in the injectable options that allow for self-administered micro-dosing. Micro-dosing glucagon means taking a very small amount to treat moderate hypoglycemia.
Using glucagon comes with anxiety, fear, frustration and shame
The study reveals a strong sense that needing and using glucagon essentially feels like a weakness and a failure, encompassed by a general sadness.
Participant shares: “You feel kind of ashamed almost, like, ‘I should know better. At this point, why the hell am I letting this happen?’ But logic tells me, ‘Hey, shit happens.’ Sorry. But then at the same time, you still kind of just beat yourself up over it, because you figure after having diabetes this long, we should have it figured out. And the reality of it is, we don’t. We just don’t have it figured out, and it’s really frustrating and overly humbling. It’s embarrassing. I get angry. I get frustrated. And yeah, it’s overwhelming to be an adult at this stage at my life and be dependent. I find that humiliating at best.”
Participants also communicated feelings of panic and anxiety regarding severe hypoglycemia, explains the study. Those feelings have led them to overtreat lows, inevitably resulting in high blood sugar.
Participant shares: “It’s that sort of panicky. And I think that could contribute to some of us overindulging in trying to deal with the low blood sugar. It’s very hard to say, ‘Okay, I’m just got eat two lifesavers, and we’ll see how it goes,’ or one glucose tablet and then I’m good. I had a low the other day, and next thing I know I had six glucose tablets and I quickly realized I was really in trouble after that, because I was now going to go too far the other direction.”
Many people are not aware of the modern single-step forms of emergency glucagon which leaves them with the “glucagon emergency kit” or GEK. This older glucagon kit requires multiple steps which can be extremely overwhelming during the emergency of severe hypoglycemia.
Participant shares: “I think for me the problem is how difficult it is to prepare; concern that the person who’s taking care of me, even if they know me really well, is going to panic and can’t quite figure out the instructions and drop the bottle and drop the needle…or if they don’t [know] me that well, is going to look at it and say, ‘Holy crap. No, I’m not doing that.’ I think those are —or they can’t find it. Those are the problems for me.”
The time it takes for glucagon to take effect is also a huge factor of importance for those considering acquiring it and potentially using it.
Participant shares: “I think [the speed is] obviously important if we were going to use it. But I think over the years, most of us have learned it’s just not a practical thing to wait for. Anything you have, whether it’s the glucagon or the Snickers bar or the package of Smarties, you want it to work quickly and be effective and not give a lot of residual things like that nasty hangover headache that you end up with or some other awful feeling from the rebound.”
Like many other supplies and medications required to manage diabetes, the cost of getting glucagon can be very stressful and expensive.
Participant shares: “If you do not use it, it’s going to expire. The cost of prescriptions in this country is outrageous. And with people losing their jobs and everything in this pandemic, cost is a big thing. And having it expire, you have to keep purchasing it.”
Emergency glucagon products are intended to be administered to a person with diabetes by another person. However, participants did report self-administering glucagon. Certain circumstances can lead to self-administration, including severe morning sickness during pregnancy, an accidental overdose of insulin, and food poisoning or stomach bugs with repeated vomiting.
Participant shares: “Yes. I did [self-administer glucagon] once. So, I also have celiac. I was traveling and got some food that was not gluten-free, and I was very sick. And I couldn’t keep food down. And of course, I had given myself a bolus of insulin for the carbs that I ate that I did not keep down until after calling my physician. She was like, ‘Just take a glucagon.’ And I so I did. I gave it to myself so that I could maintain a good blood sugar. And I took half of a dose.”
Read more insights on the experience of using glucagon in the full study.
Emergency glucagon is an important life-saving medication but the cost, lack of education, and emotions that come with getting it and using it are significant.
“The glucagon market could benefit from taking these psychosocial aspects of disease management into consideration with product design,” explains the study. “People with diabetes would benefit from their healthcare professionals educating them about glucagon.”
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Embarrassing & Frustrating: People with Type 1 Diabetes Talk About Using Glucagon
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