This content originally appeared on Beyond Type 1. Republished with permission.
By Alexi Melvin
Dr. Steve Edelman, MD, is a diabetes specialist as well as the Founder of Taking Control of Your Diabetes (TCOYD) — an organization focused on empowering those with diabetes and encouraging them to “take a more active role managing their diabetes, and being self-advocates.”
Dr. Edelman recently took the time to chat with Beyond Type 1 about the importance of glucagon, among other key issues around hypoglycemia.
BT1: Thanks so much for speaking with us today Dr. Edelman — to start, can you talk about your personal background with type 1 diabetes?
Dr. Edelman: When I turned 15, I came down with all the drastic signs and symptoms and was diagnosed with type 1. 1970, they really were in the dark ages. So, my doctor put me on one shot of insulin and regular in the morning and we had urine testing and that was it. Could you imagine being on regular insulin just with breakfast?
And then eventually when I was an undergrad at UCLA, I ran into some really good diabetes doctors and they got me on the right track, but I did have really poor control for a long time. I didn’t really realize the importance of it. Unfortunately, as a result, I do have complications, but the good news is they’re stable.
What inspired you to create TCOYD?
It dawned on me that the education to people with diabetes was really quite lacking way back to 1995. I went to the Joslin clinic for my training. I went to UCSC to do clinical research, and I realized, all of the education was just going to healthcare professionals.
Not that it wasn’t good, but that’s the only direction it was going. I decided to put on a conference for people with diabetes at the San Diego convention center in September of 1995 and that was the beginning of TCOYD. And I was just going to do one conference here. I had two young kids and so I was just going to do it once a year. And that was a lot of work. But the feedback was so powerful, and people were, it’s a great phrase, so thirsty for information that I just said, “you can’t just stop at one a year” and then slowly spread. And then we started putting them on around the United States.
I felt that it was still important to educate healthcare professionals and about 15 years ago I kind of gave up on healthcare professionals. They were really stuck in the mud, really hard to change their practice habits, so that’s why I focused on patients. Then about 15 years ago, we started this program called Making the Connection, where we brought people with diabetes and healthcare professionals together in the same learning environment. The healthcare professionals got their own lectures in their own room at the convention centers and patients got their own, but in parts of the day, we brought them together. It was all in an effort to improve the doctor-patient relationship because our system is pretty broken. People are pretty pissed off at their caregivers. And if you don’t have trust in your caregiver and if the caregiver doesn’t have empathy back, it’s a bad combination.
So now we do our CME programs in parallel with our patient programs, and now we converted to virtual and I think we did a really good job. I don’t get much credit myself. If you’ve seen some of the crazy videos we do to try to keep education entertaining. I think we have a combination of good content and entertaining. I think the future’s going to be virtual learning for us. We have a conference on Saturday and we have people signed up from 60 different countries, about 3000 people across the United States, every state.
What sparked your desire to bring awareness to hypoglycemia and the need for glucagon options in particular?
A lot of people do not remember that in the old days there were people dying of hypoglycemia and it still occurs. Thanks to the continuous glucose monitor (CGM), it has gone down dramatically. I haven’t had any patients recently pass away from hypoglycemia, but I’ve had 10 people through the years, and they all were the same. They all had really good control. They were told a zillion times that they need to avoid complications, get their blood sugars down, but we didn’t have tools to prevent severe hypo. After having type 1 diabetes for 10 years, you kind of lose your response to hypoglycemia and you lose your symptoms. It’s really a sad thing.
What are some of the main issues that lead to severe hypoglycemia today?
Being a diabetes specialist, I see some pretty serious stuff all the time including people who failed at using the old glucagon kit, which delayed therapy and caused unbelievable hassles. I also have an uncle who had type 1 and he died from hypoglycemia and he had severe hypoglycemia unawareness. He had no complications of diabetes. He was treated at the Joslin Clinic when he was diagnosed, but he was so strict. I could not get him to back off like my other patients. And he basically got low and didn’t realize it. And that was it.
How have glucagon options progressed?
With the old glucagon kits, you had to be almost like a chemist to put these things together. And think about it, the person administrating and getting the glucagon ready to give, they’re typically not medically oriented. They’re the mother, the sister, coworker. And you’ve got to squirt diluted fluid into a little vile of powdered glucagon, mix it up, make sure it’s all dissolved. Then you got to suck it back out into the syringe. Then you got to take the syringe and jab it into someone on the ground that’s typically having a seizure or biting their tongue or rolling over, or demonstrating pretty bizarre behavior, which can occur. And when someone’s like that, time is of the essence. Anything that could make the quick administration of glucagon in an easy way for almost anybody, no matter what type of background is, is so important.
What would you say is the biggest obstacle around glucagon access today?
I think the biggest issue today is people do not have a valid prescription for it. I always have this analogy, if you have a house or an apartment and it gets robbed and they steal everything that’s important to you, what do you do next? You get an alarm system on your house. And I always say that same analogy. If someone’s had a bad hypo, they always have glucagon with them, but they did not have one at the time that they really needed it when they had a bad hypo. So, we have to really say, “Yeah, it can occur even if you’re on CGM, especially if you’re a type 2 on insulin as well,” cause that happens. And you got to have a valid glucagon kit with you, a valid meaning unexpired. These new glucagon kits last much longer. They don’t expire as fast as the older ones do, so that’s also helpful.
What are some ways that the CGM can most effectively help avoid hypos?
Well, one of the things I do in clinic is to really check where people set their upper and lower alerts. I had a patient yesterday in clinic who has had type 1 for 60 years. Her A1C is unbelievable, but she does have hypo unawareness and her lower alert was 65. You have to convince people that the extra alerts are worth it to you.
A lot of people said they put their lower alert at 65 and they don’t realize this situation called the “lag time.” So, when your blood sugar is dropping, even if you have a diagonal arrow down compared to, even worse, one arrow down or two arrows down, looking at the Dexcom arrows, they don’t realize that the glucose in your circulation is probably much lower than it appears on the Dexcom monitor or your phone. Because the Dexcom sensor and other sensors too, they measure the glucose in the subcutaneous tissue, and there’s a lag between the subcutaneous tissue and the circulation.
When your Dexcom goes off or when your CGM goes off at 65, and if your trend arrow’s going down, you could be 45 or 40. So that’s really an important issue, especially for people that their symptoms aren’t as obvious anymore. You could be caught off guard. And I had multiple patients that has occurred with. And then unfortunately, as you know, the majority of T1Ds in this country do not wear a CGM and that’s the topic of a whole other story.
Does this lag time issue apply to a regular glucometer as well?
Yes. If your blood sugar is dropping, your meter or CGM may be perfectly accurate of the subcutaneous tissue at 65. If you checked your blood sugar with a meter, it’s still going to say 65, but your circulation that’s going to your brain might be 45. So, the lag time is key. You could have the most accurate meter or CGM in the world, it doesn’t affect the lag time.
Is there anything else that you would want people to know about glucagon options that you don’t think is discussed enough?
I would say this, people have to ask their caregiver for it because in a busy clinic, it’s typically the last on the list and it’s important that they ask for a glucagon prescription.
I think they need to know that there’s two now that are just as easy to use as an EpiPen. Obviously, one is the nasal spray (BAQSIMI). But these devices aren’t for them, they’re for people who are going to be around them and that they should get more than one if they’re going to be at work or out of the house a significant part of the day. And have their best friend or their coworker be on the cautious side because when you least expect it, it can happen.