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.
Protecting your heart is very important, wouldn’t you agree? That’s what “heart sense” is all about inclusive of diet and exercise. Even babies born with heart defects are immediately cared for if and when needed. Young children, older children, adolescents, young adults, middle-agers, older folks have all heard or read somewhere in their lifetimes about taking care of their hearts.
So, let me briefly tell you my heart sense story….
As a T1D diagnosed in 1959, it wasn’t until about the year 2000 that I thought I should see a cardiologist. Oh, my heart was fine as far as I could tell. At least I felt fine. My diabetes was under control. But, being “proactive” about my life this long as a diabetic, I thought that seeing a cardiologist would be beneficial, especially for my future.
The medical insurance process is tedious and long. Nothing new. I had to make an appointment with a General Practitioner. Of course that individual wanted to know “why.” Explaining my “proactive beliefs” after having successfully lived with diabetes for over 40 years at that time, that doctor agreed. A referral was faxed to a cardiologist of whom I never met. No problem. He or she was “in my medical insurance program.” Meeting him or her was not a problem. I was interested in his or her viewpoint concerning my heart’s longevity equaling my life’s longevity.
Happily showing up to the designated appointment, not one but two nurses met me inside the office door. I thought that a little strange. A gut feeling. One left while the other led me into an examination room directing me to remove all my clothes – all of them – and to put on a hospital “johnny,” leaving it open in the front. Then she left. Cold and naked, I anxiously waited for this unknown, unmet, male heart expert to enter.
He did. His stature was tall and thin with white hair. I watched him as he immediately skittered over to the exam room’s conveniently placed computer against a far wall. He never looked at me. The nurse that told me to become naked suddenly brushed in the room, stating to me that “you’re not covered. Your insurance will not cover this.” BAM!
As soon as the cardio guy heard this, he left, too quickly, still not looking at me. And the nurse speedily left, right on his coattails! WTF, man?! I was alone. Almost horrified, and extremely puzzled, I dressed with the deafening silence of that room. Making my way to the corridor, I peaked through the doorway right then left. No one was there. The place was completely abandoned, the whole floor was quiet as I imagina a mausoleum could be. I could not – and still do not – believe to this day that that deflating experience happened. Never never never having heard from these characters, these participants in my important health care, nothing happened.
Moving on to 2017, now having lived 60 years with diabetes, a new insurance plan got me what I needed. I almost gave up…on myself! Not good. All in all, this latest expereince was 100% better and I am well. I am going to live to be 100! Whew.
Just sayin’…. A. K. Buckroth (#buckroth)
Pertaining to T2Ds: https://www.foryoursweetheart.com/?&utm_source=bing&utm_medium=cpc&utm_term=diabetes_and_heart_disease&utm_campaign=Unbranded_Sweetheart_[exact]&gclid=COmOy87UhNcCFZDbDQodlNUPNA&gclsrc=ds
“For someone with T1D,the number of years with T1D increases risk for CVD. T1D associated neuropathy can impact resting heart rate and peak heart rate and add complexity to diagnosis of cardiovascular disease.”
Have you ever heard of such a thing…”Urban Diabetes?” I have not. Until today. With that being written here’s a link for you to visualize this subject…. http://www.citieschangingdiabetes.com/
Norvo Nordisk, one of many a pharmaceutical companies in the world, began 90 years ago! [“It began with the two small Danish companies Nordisk Insulin Laboratorium and Novo Terapeutisk Laboratorium founded in 1923 and 1925, respectively. The two companies started the production of the revolutionary new drug insulin that had just been discovered by two Canadian scientists.”]
“Nearly two-thirds of all people with diabetes live in cities. It’s an emergency in slow motion. But urban diabetes is not inevitable. If we work together, we can create cities which help us live more healthy lives.”
Check it out at: #UrbanDiabetes in 75 seconds. I’m a T1D, also a life-long ‘urbanite!’ How about you?
Just sayin’…A. K. Buckroth
The second half of 2017 continues to move forward with appearances of author A. K. Buckroth.
August 24, 2017– HAS BEEN POSTPONED to Thursday, August 31, 2017…. Diabetes Talk: T1D vs. T2D, 1:30pm – 2:30pm3:30pm – 4:30pm ± in the Brookdale Senior Living Center, 7414 Stock Ranch Road in Citrus Heights, CA. Book give-away along with hand-outs regarding the international sign and color for diabetes, meal planning discussion/information, carbohydrates in alcohol beverages, the JDRF (Juvenile Diabetes Research Foundation) and more. Audience shares encouraged.
- Saturday, October 14, 2017 – Walnut Grove Library, 14177 Market St. P.O. Box 40, Walnut Grove, CA, 95690; 1:00pm – 5:00pm. “Authors Showcase” = Numerous authors will be available to share their books.
- Saturday, November 4, 2017 – Fair Oaks Library, 11601 Fair Oaks Blvd., Fair Oaks, CA, 95628, (916) 264-2770; 12:30pm – 5:00pm. “Authors Showcase” = Numerous authors will be available to share their books.
- Saturday, December 9, 2017 – North Highlands-Antelope Library, 235 Antelope Road, Antelope, CA, 95843, (916) 264-2920; 2:00pm – 5:00pm. “Authors Showcase” = Numerous authors will be available to share their books.
- Saturday, December 16, 2017 – Sylvan Oaks Library, 6700 Auburn Blvd., Citrus Heights, CA, 95621, (916) 264-2700; 2:00pm – 5:00pm. “Authors Showcase” = Numerous authors will be available to share their books.
- Book presentations with readings, autographing and sales will be available at all events. See you soon!
Continuing my ‘book marketing procedures,’ I am once again engaged in coordinating numerous “Authors Showcases” at local Sacramento County, California libraries. Promotion of my four award-winning books (www.mydiabeticsoul.com) is acceptable in such a free, and public venue. Encouragement and attention increases in such a familiar setting with numerous author participants and the general public visitors. Libraries are happy places.
As a ‘free-agent,’ sole-proprietor, self-published author, distribution and supply of my books is up to me and only me. When I began this trek in 2010, it was new to me, a bit frightening, unfamiliar. Thanks to my Masters Degree program (University of Pheonix, 1999), I gained the confidence required with public speaking. Thanks to a personal friend, also a self-published author, for leading me to my first writers meeting and club, I joined and became not only acquainted with other writers, published and unpublished, but my yearly membership lasted nine years leading me to marketing and promotional venues for all its members.
I like to think I help the general public become aware of my books (subject matter is T1D – Type One Diabetes) and their subject matter, the cost of each book and where to find them. Along the way, many other authors are consistently invited to participate to do the same. This process of multiple participant invitations continues to be more comfortable for me, having another person, specifically and author or two, to share in these experiences. It’s happy work.
For instance, an upcoming “Authors Showcase” with twenty authors is taking place at the Carmichael, California Library on Saturday, August 5, 2017, between 1 & 4pm. Other such events are in the works as well. Twenty individual authors, coming together in one place, most having the same dream as I – to promote out works, speak to individuals about out artistic values and beliefs – the whos, whats, whens, wheres, hows, and how muches involved in such a career. After all, writing is an individual personal art.
Libraries are free, comfortable, accommodating, safe, and easily accessible.
Other book marketing venues – with or without a price tag – have been city and country fairs with or without my supplying a personal E-Z up (tent); private speaking engagements in Church (Holy House) basements; and Assisted/Independent Living Centers where the residents are absolutely thrilled to listen about my books. All it takes is a little time for research location of resources, a hone call, and your in!
My next marketing venture is to gather individual writers from separate groups/clubs to join in an event. With numerous writing groups and clubs in this area, I wouldn’t think the opportunity would be too difficult. There is the beloved NCPA (Northern California Publishers and Authors Organization) CAW (California Writers), GCW (Gold Country Writers), SSWC (Sacramento Suburban Writers Club), SIC (Sisters In Crime), and others. This twinkling idea will grow – that’s how I work, with my brain. Heck, it’s appealing to me, encouraging, insightful, happy, especially when others are involved.
A. K. Buckroth