Last month, this concerning issue was presented at T1D Exchange’s Annual Meeting. Four individuals currently or soon facing this dilemma spoke on a patient panel, bringing to light a new complication of type 1 diabetes rarely discussed in a public forum.
“This is a new problem, based on our recent success in treating T1D,” said Dr. Nick Argento, an endocrinologist and person with diabetes (PWD). “The Joslin 50-year survivors used to be sort of an elite group. That’s not true anymore. Now, it’s expected, not the exception.”
Joining Argento on stage was Paul Madden, Bunny Kasper, and Sandy Brooks, each with a different diabetes experience, but all in their later stages of life.
Bunny Kasper, who is in her mid-seventies and has lived with diabetes most of her adult life, volunteers as a support group leader for families with children who have T1D. She shared that this group of parents recently commented that she should find diabetes management easier because she’s been doing it for so long. But what they didn’t understand was how much more tired she is at this age, and that it’s actually harder, not easier, after all these years.
“There’s just very little understanding about the elder generation and what we deal with,” said Kasper.
In addition to physical wear and tear, the panelists shared how much fear plays a role in their daily lives with T1D, and how vulnerable they all feel about their future.
“I’m afraid of being alone, and not being supported with my care,” said Paul Madden, 66, diagnosed 55 years ago.
Argento shares the same fear, and has already seen this issue in his own T1D patients.
“Their network has broken down. They’ve had a spouse who was their advocate and assistant, but then has a stroke or develops dementia or dies and suddenly, they’re not present anymore.”
Not only is a caregiver or partner helpful at home for everyday diabetes tasks, but also as an advocate in hospitals or other institutions. Argento and others on the panel shared stories of healthcare providers ignoring their T1D needs during surgery or other hospitalizations, and highlighted the importance of the greater medical community to become more educated about diabetes in order to care for all people with T1D.
“What if I can’t advocate for myself?” said Argento. “I’m deathly afraid of that, and I’ve seen some horrible outcomes, unfortunately, for my patients in the same situation. It creates tremendous anxiety.”
Sandy Brooks, a registered nurse and surgical type 1, says nursing homes are even less prepared and educated about insulin dependency.
“There are great people there who work hard, but T1D adds an aspect that you don’t learn about in nursing or medical school.”
The cost of diabetes management and access to technology, therapies and care, are also a big worry for these panelists, especially as many of them are or will soon be eligible for Medicare. Argento has advocated fiercely for CMS coverage of continuous glucose monitoring (CGM) systems, including representing the Endocrine Society before the FDA to approve non-adjunctive use of Dexcom, which was a necessary step towards CMS’ decision to cover CGM. He was also in a pivotal meeting with CMS on the Dexcom approval, which came through earlier this year.
“There was a huge population of type 1 patients who were depending on CGM, and couldn’t live without it. They’d hit Medicare age and they’d lose it,” said Argento, who encourages all people with diabetes to persist, and insist, on the care and therapies they need. “They should have gotten a medal for making it to Medicare age, not a denial from CMS.”
Kasper pointed out that the way she planned financially for her retirement over the previous decades now won’t cover her diabetes costs under the current landscape, and that older people like her cannot make up this shortfall by earning more income.
“If you don’t have the money you need, you’re not going to get the supplies or the care,” said Kasper.
Madden had one piece of advice for seniors facing these unchartered waters with T1D. He spoke of the importance of having a good relationship with one’s providers and finding one that will listen to your concerns, whether they’re related to aging, diabetes, or both.
“It’s amazing how important that relationship is,” said Madden, whose current endocrinologist looks at him as an individual, listens to his questions, and helps him refine his questions before answering, because, he says, sometimes he doesn’t know how to ask them. “That’s powerful when that happens. That’s access at the fullest level.”
We thank our patient panel for sharing their perspective, and opening the community’s eyes to this very important topic. As always, Glu and T1D Exchange need feedback from our patient community in order to research critical issues in type 1 diabetes like this one, so please comment and share your thoughts on aging with type 1 diabetes and other topics you feel are important.