During insulin’s first century, treatments and resources for people with diabetes have steadily progressed. So, too, have relationships between the patient and the provider. A recent Endocrine Society-hosted roundtable highlighted this vital connection and how it has evolved through the decades.
Leonard Thompson was 14 years old in 1922, and he was dying of type 1 diabetes. Mere months earlier, physiologist J. J. R Macleod, surgeon Frederick C. Banting, and Banting’s student Charles Best had successfully extracted insulin from a dog pancreas. When biochemist J. B. Collip joined their team in December 1921 and got a purer extract of insulin from cattle, Thompson became the first human being to receive an insulin injection. The treatment worked, and type 1 diabetes was no longer unsurvivable — for the first time ever.
Fast-forward 100 years, and what was once a death sentence is now a treatable, though chronic, condition. As groundbreaking as the discovery of insulin was, how people with diabetes have adapted to fully living their lives with insulin use is just as remarkable. Another positive to come out of this evolving story is how providers and patients have built collaborative relationships to manage individual cases as effectively as possible. And yet, challenges still abound, from both patient and provider perspectives.
In early August, the Endocrine Society hosted a roundtable entitled “Building a Strong Patient-Provider Relationship” that demonstrates just how critical the patient–provider relationship is as well as spotlights patient resources and identifies persisting gaps. This virtual question-and-answer session included Endocrine News editor Mark A. Newman as facilitator and participants Grazia Aleppo, MD, FACE, FACP, Northwestern University; Marguerite Brunner, a patient of Aleppo’s; and Evan Strat, a member of the College Diabetes Network.
A Mid-Century Diabetes Diagnosis
Brunner was diagnosed with type 1 diabetes in 1964 at age 12. Back then, the structure of insulin had not yet been discovered, and available options for therapeutic insulin were few. Accordingly, management of her condition was intricate and rigid: “I spent 10 days in Children’s Memorial Hospital in Chicago, where I learned to draw up insulin and inject it,” says Brunner. “My mom and I learned the very restrictive diet and to measure everything that I ate on a gram scale.” If Brunner went to a friend’s house, her mother prepared food for her to take. She had to stick to a three-meal, two-snack-per-day plan with nothing in between except water to maintain blood glucose control. Even diet soda — a brand-new phenomenon in the mid ‘60s — was heavily restricted until research was available on how it would affect blood sugar, Brunner explained. She also had to test her urine glucose because home blood tests were not yet on the market. Four times daily she put drops of her urine into a test tube with a clinical test tablet, compared the resulting color changes to a chart, and documented the process.
This was a terribly heavy burden for a child, and it was tinged with awareness of her possible early mortality. “It was all we had, so I did all I could to survive and not do too much damage to my body . . .” recounted Brunner. “. . . I thought some about dying early because that had been predicted. I also worried about losing my eyesight. I wanted to have children at some point, but I figured by the time I got to that advanced age I’d either be dead, or there would be a cure.”
“I did all I could to survive and not do too much damage to my body. I thought some about dying early because that had been predicted. I also worried about losing my eyesight. I wanted to have children at some point, but I figured by the time I got to that advanced age I’d either be dead, or there would be a cure.”
Margaret Brunner, Chicago, Ill., diagnosed with type 1 diabetes in 1964 at age 12
Brunner has now been living with diabetes for 57 years, and she did have those children she had hoped for, due to tremendous advances in diabetes care since 1964, but, she says, “most people have no concept of what it was like then for me.” The first advance to really impact her quality of life was the advent of home blood testing in her adulthood, which she credits with providing her a real sense of what was going on in her body and a better ability to control those processes. As time went on, however, Brunner’s glucose levels became increasingly labile, forcing her to do 15 blood tests a day including overnight. She often had to adjust her life and work around her frequent testing, and she forfeited the career she really wanted to pursue. Diabetes always had to come first. If she got distracted and veered from her schedule, hypoglycemic seizures and other serious consequences were the not infrequent result.
When the insulin pump came along, her quality of life once again saw a boost. She could eat when she was hungry rather than according to an unforgiving schedule. She could sleep a full night through, and it gave her all-around greater control over her body.
But the most important final technological advancement to profoundly improve her life is the continuous glucose monitor (CGM) that works in concert with her pump and adjusts to blood sugar fluctuations. Says Brunner: “I think about what my life would have been like if I’d had a CGM a few years earlier. I likely would not have suffered hypoglycemic seizures and therefore I wouldn’t have fractured two of my vertebrae and injured my shoulder so dramatically that I needed a shoulder replacement. I would have been able to continue the job as a nurse anesthetist I loved and would have been able to teach three-hour literature classes instead of much shorter ones.”
Having lived through the evolution of diabetes technology in a way not many can relate to, Brunner has regrets but remains grateful, above all for her trusted caregivers. Her very first pediatric endocrinologist, Matthew Steiner, at Children’s Memorial, brought her books to read to educate herself about her condition, telling her, “‘[you will] have to manage it’ — he would help me — but it was my disease.” She says it felt like regaining some control over a life she had completely lost control of: “It made a difference and set the pace for me for the rest of my life.” At the Diabetes and Pregnancy Clinic, endocrinologist Richard Phelps is another clinician whose care helped her live her life how she wanted to. “He listened to me very carefully, and he always respected my knowledge of my body and my disease.”
On retiring, Phelps referred Brunner to Aleppo, about whom Brunner says, “She knows the technology like no one. I upload my data, she looks at it for a few minutes, and just like that she comes up with a little tweak that’ll solve whatever issue I’m having,” says Brunner. “I could not do it without her.”
Patient–Provider Partnering
Perhaps the most important advance of all to come out of the evolution of diabetes management is the awareness of the need for providers to partner with their patients for optimal care. Aleppo spoke next, adding the provider perspective to Brunner’s story and offering insight into how to strengthen such relationships.
“With new patients with diabetes, I say, ‘OK you sought me out; what can I do for you? ‘What are you trying to get out of this meeting and this relationship?’,” says Aleppo, “because people come to us not as their first doctor usually. So, I try to understand where they’re at and what they need to be accomplished.” She says she puts on her detective hat to glean what their primary concern is and whether it’s hypoglycemia, or feeling stuck in a particular regimen, or fear of complications, so she has a base to work with and to build a plan from that includes goal setting. With goals, she says she encourages both short-term and long-term goals and engaging patients throughout the process.
“I always introduce two things: one is education, which can be tricky with somebody like Marguerite, who’s had type 1 diabetes for a long time, because of the huge number of changes in the last 50 years, but some people don’t get the privilege or the chance to actually get to know more about what’s new, and it behooves me to do that. Then I always pitch CGM technology because truly that is the standard of care. [Patients] can really do so much better, prevent hypoglycemia, and really decrease the burden of their disease.”
“I always introduce two things: one is education, which can be tricky with somebody … who’s had type 1 diabetes for a long time, because of the huge amount of changes in the last 50 years, but some people don’t get the privilege or the chance to actually get to know more about what’s new, and it behooves me to do that. Then I always pitch CGM technology because truly that is the standard of care. [Patients] can really do so much better, prevent hypoglycemia, and really decrease the burden of their disease.”
Grazia Aleppo, MD, FACE, FACP, associate professor of medicine – endocrinology, Northwestern University, Chicago, Ill.
Even with the CGM technology, new challenges might emerge, such as with very old or very young patients who might need a simplified regimen (e.g., a long-acting insulin injection) or help with administration to keep them safe. Another challenge that tends to occur with type 2 diabetes is hesitancy with starting insulin. “These patients often don’t realize that insulin is hormone-replacement therapy, and they need that physiologic replacement whether it’s with a long-acting insulin, or we go gradually. But it should be a conversation, not an imposition.” Aleppo says that patient buy-in is critical in diabetes self-management and being able to demonstrate to patients what’s happening with their glucose levels with CGM often helps to engage them.
“So, it’s very easy to see that this program just doesn’t work one without the other. You have to be in this as a team,” she says.
Transitioning from Pediatric to Adult Care
Another challenge the patient–provider team faces is how to make the transition from pediatric to adult care and what key considerations should be considered. “First you have to understand that these patients are going through multiple transitions including trying to understand the dynamics of a new practice,” explained Aleppo. “It’s a whole different world.” She says that she tries to get a few minutes alone with transitioning patients whether they come in alone or accompanied by their parents so they can share anything they might hold back on with parents present and to gauge their readiness for self-care including filling prescriptions and scheduling appointments.
A new college student, for example, might be juggling class schedules that change each semester, part-time jobs, and holiday breaks. Diabetes self-management must be re-thought out in each of these scenarios — students must be prepared for anything. “That’s one thing we try to do in our practice,” says Aleppo, “be flexible. We need to accommodate them to keep them safe throughout this time.”
Evan Strat, a student at Georgia Tech who’s had type 1 diabetes for 11 years knows these issues well. “Two of the things that I found really challenging were making sure I was eating healthy and exercising. I noticed that when I cook for myself, I know the carbs in the food, whereas the dining halls were more fast-food oriented and not necessarily offering the best things to eat.” Strat explains. “Similarly, making time in my schedule for exercise helps, but when you have classes and stressful assignments, it feels sometimes like you can’t take 20 minutes out of your day to take a walk or go for a run.”
Strat also described how living with diabetes is difficult in and of itself. “It’s mostly just finding the willpower. Your level of motivation comes and goes, and sometimes diabetes gets really frustrating because your pump sites aren’t working, and you just don’t want to deal with it,” he says.
Here again, the newer technology is helpful, he says, because it provides a constant layer of assistance to prevent hypoglycemic episodes. And, although he uses data analysis tools like the Dexcom CLARITY app and the Tandem t:connect, these applications do not “talk” to each other and do not integrate with his pump data. He is hopeful that something will come along to combine all the data he needs in one place.
“When I was starting college, my biggest concern was how I was going to navigate that transition to being completely independent. A lot of it was the basics, like how I would tell my roommate that I have diabetes or making sure that if something happened and I needed emergency assistance how I would get that.”
Evan Strat, Georgia Tech student, living with type 1 diabetes for 11 years
In the meantime, some low-tech resources like the College Diabetes Network (CDN) and other support groups have helped Strat self-manage his diabetes and live a healthy life. “When I was starting college, my biggest concern was how I was going to navigate that transition to being completely independent. A lot of it was the basics, like how I would tell my roommate that I have diabetes or making sure that if something happened and I needed emergency assistance how I would get that,” he says.
CDN’s mission is to help young adults with diabetes handle these very situations and thrive. Strat says the Georgia Tech CDN chapter hosted many helpful events, such as “Diabetes 101” and outreach–advocacy combined events. “We worked with the dining hall staff to get better nutritional information as well as with the student Health Center so that people with diabetes could come and drop off their used sharps,” Strat says. “I’ve also been fortunate to be a part of CDN’s Next Gen Fellows program, which is to jumpstart the passion for going into diabetes as a field through professional development workshops and providing the opportunity to go to one of the major diabetes conferences.”
Patient Resources: Connecting the Dots
As upbeat and proactive about their diabetes as Brunner and Strat are, it’s clear that on top of the burden of living with a serious chronic condition, they have also had to continuously adapt to new technologies and new approaches to management over the years, which must have contributed to their load even while the advances themselves intended to lighten it.
The Endocrine Society and the Hormone Health Network have created a hub that makes staying on top of available resources easier and more efficient. Aleppo herself helped create a CGM pocket guide to introduce the technology to users, both patients and their caregivers, available for free download in English and Spanish to anyone.
“We also have something called the Diabetes Technology Roadmap that tells you what each tool is from a glucose meter to an insulin pump to an insulin pen to a CGM to explain what these tools do and what might be something you would be interested in,” Aleppo says.
But explaining the tools and types of insulin available is only half the battle. Connecting patients to affordable prescription options for them has been an Endocrine Society mission for some time. In “Addressing Insulin Access and Affordability: An Endocrine Society Position Statement,” published in JCEM in January, the Endocrine Society advocates for ensuring access to affordable insulin. “It points out specific things to stakeholders such as they need to make sure that they are more transparent in how and why insulin costs are so high,” Aleppo explains. It also outlines policies such as limiting cost-sharing to a co-pay of no more than $35 and capping costs at no more than $100 per month. “They also are recommending that the market support more bioavailable and biosimilar insulin preparations and, finally, making significant changes to the payment system for Medicare Part D and Part B, which affects our older patients who may be on a fixed income. It’s really hard to see people crying in your office because they can afford to either buy food or insulin, but not both, so I applaud the Society for being at the forefront of this important mission,” Aleppo says.
While the Society advocates tirelessly to reduce the cost of insulin, an interim resource she recommends is getinsulin.org from the non-profit organization Beyond Type 1 that allows patients to enter their zip code and any insurance information. “It tells you with simple prompts what can you do to lower your costs, whether it’s a voucher, special assistant programs, or a combination,” Aleppo says.
Affecting hundreds of millions worldwide, diabetes is a disease we need to be able to live with. With patients and providers banding together, life with diabetes can be so much more than just survivable.
Horvath is a freelance writer based in Baltimore, Md. She wrote about the impact of social determinants on health disparities as part of a CEU 2021 preview in the August issue.
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