Wednesday, April 26, 2023

Approaching a Half-Century of Life With Type 1 Diabetes (T1D)

On July 24, 2023, I will mark 47 years of having lived with autoimmune Type 1 diabetes (T1D). I was diagnosed as a seven year old, so not quite fifty years ago, but much closer than I ever really anticipated. When I was diagnosed in 1976, no one told me that I should expect horrific complications or that I'd die young because threats weren't part of the conversation; some may have been due to my age. But there was also no such thing as a certified diabetes educator in 1976; instead, pediatric nurses instructed patients on how to give themselves an insulin injection (with the help of an orange or grapefruit which received the trial injection). In fact, scientists had only proven that Type 1 diabetes had a distinct etiology from Type 2 diabetes in 1973; before that, the presumption was that children usually always developed Type 1 and therefore needed insulin. Older patients were more likely to be misdiagnosed. Unfortunately, that remains true in 2023.

The only reason I even have a record of the exact date of my diagnosis is because back in 2007, I'd blogged about my 31st anniversary of diagnosis, catch that post at for more. At the time, my mother was cleaning out her closets and she'd saved my Baby Book, and that contained a calendar from June and July 1976 with everything I had done. Using that calendar, we did some calculations to come up with what was my T1D diagnosis date. My mother had saved those things because I'd spent the summer across the country with my maternal grandmother, uncle, aunt and cousin near Tacoma, Washington and we included the calendar in a scrap book we created as a way to keep me amused while I was an in-patient in the hospital for a week at the time. 

Being an in-patient upon T1D diagnosis is largely unheard of today because commercial healthcare insurance companies now use any excuse possible to avoid paying any claims, but back in 1976 when I was diagnosed, we did NOT have home blood glucose testing (that emerged around 1979 to 1980 or so), hence the ONLY way for a patient to realistically develop insulin dosage/correction ratios was to do so from the hospital, where the hospital could take blood samples, send them to an in-house lab, and test the blood glucose levels in order to help doctors (and patients) realistically set those things. 

That meant patients in 1976 had no possible way to do self-testing of blood glucose for themselves. Fingerstick self-testing, much less CGM's, were little more than someone's fantasy at the time.

My recollections weren't really about diabetes per se, but my first ride on an airplane (to a 7 year-old, the memories were vivid because flying was really expensive in those days). In 1976, I also remember the airlines permitted smoking during the flight, hence certain rows of seats on the plane had their own ashtrays in the armrests. My seven-year old self loaded those nasty ashtrays up with used chewing gum! However, by then, the airlines had designated "smoking sections" which had more ventilation (and curtains to separate the seat classes), which meant only certain seats permitted smoking and the personal ashtrays in other seats were sealed shut. I also had vivid recollections of what an incredible struggle it was to hold-off having to visit the restroom when the captain turned on the "fasten seat belts" sign, so I learned to hold it out of absolute necessity. I also learned to minimize my beverage consumption so I could minimize my restroom trips even though I was incredibly thirsty. It was a different time, but some things were exactly the same as they are for patients in 2023. 

While some of my peers have already crossed-over into the half-century mark of living with T1D (for example, I'm thinking of my friend Riva Greenberg, who eloquently chronicled her own milestone of a half-century of living with T1D in her blog back in 2022, see for her post), and yet for me at age 54, I have 47 years with T1D behind me, yet I still have another 11 years until I'll become eligible for Medicare.

But, I have tried to "pay it forward" to some degree.

For example, in 2016, I worked tirelessly to ensure that seniors with T1D covered by Medicare could get their CGM's covered and I'm proud to say we succeeded in gaining CMS/Medicare coverage (catch my post at for my coverage). Truthfully, I wasn't being completely altruistic or selfless. I anticipated that sometime in my own not-too-distant future, I'd become eligible for Medicare myself, and at the time, I also wanted to make damn certain that CMS would cover the CGM devices when I get there. 

I am friendly with several people older than me who experienced a fair amount of trauma and difficulty when they aged into Medicare and suddenly, coverage of CGMs was no longer available to them (including several people with hypoglycemia unawareness), so I acted a bit selfishly when I saw an opportunity to help persuade the FDA to re-classify CGMs as something other than "adjunctive," but rather as "therapeutic" which was a first step towards realistically securing CMS coverage. There was some risk that doing so could persuade commercial healthcare insurance companies from paying for test strips, but nevertheless, I jumped at making Medicare coverage a reality because I understood just how important it actually was.

I concur with my friend Riva Greenberg's assessment that we are entering a period where increasing numbers of us will enjoy the "luxury" of being people with T1D aging into Medicare coverage in comparatively good health (something previous generations of patients with T1D did not always experience). Unlike Riva, I haven't yet applied for a Joslin 50-year medal (I still have 3 years to decide if I necessarily even want such an award; its still not exactly a milestone I'm looking forward to eagerly). I look forward to eligibility for Medicare, but I still have more than a decade before that happens.


Still, if there's one key element I am more convinced now than at any point in my life (so far) that's helped patients with longstanding T1D, it is resilience, NOT glycemic management as medical doctors will assert.

Why do I say resilience was the key to success? Consider what I've endured over my own lifetime with T1D.

When I was diagnosed, we had no way to even measure our own blood glucose for my entire childhood with T1D (I was a teenager in middle-school when fingerstick testing emerged). At the time, we had Clinitest urine testing, but the reality was, that was never very accurate, and could have been hours after-the-fact, hence it could not really guide our dosage decisions. In many ways, we were flying blind in those days. It wasn't until the early 1980's that we had access to blood glucose testing, and that was really revolutionary. Even then, the insulin was so incredibly slow-acting that it was next to impossible to make the types of adjustments as patients do today. Also, doctors at the time merely suspected without proof that glycemic control made any difference; the DCCT was published in 1992 or 1993.

Instead, my memories were that patients with T1D were forced to live rather regimented lives; we really had to eat meals exactly on a schedule so our meals would occur about when the 8-hour peak of highly-purified Regular insulin happened (which, incidentally, was pork insulin in those days, which is actually significantly closer to human insulin in genetic structure than such analogues as Novolog/aspart/Fiasp are in 2023). Luckily, as a school child, that was pretty easy since we had lunch at a set time each day. We also had to rely on feelings of lows (feeling shaky, for example) to know if we needed to treat hypoglycemia with orange juice (no glucose tablets in those days), for example. I had many problems with overnight hypoglycemia as a child, due to the insulins prescribed at the time. I went back to the hospital and was given an alternative to isophane/NPH called Lente which worked significantly better for me. We did have old-school mix-and-inject glucagon rescue kits (today, there are several generic versions of those older products (I covered those HERE), but most patients prefer more convenient options like Gvoke or Zegalogue glucagon rescue pens, or BAQSIMI, which is an inhalable version.

However, resilience is also what realistically enabled most patients like me to successfully navigate life with predatory third-party drug distribution system middlemen called Pharmacy Benefit Managers (PBMs) whose corrupt rebate-aggregation transformed a century-old medicine known as insulin into one of the most overpriced drugs in existence according to a 2020 Senate report (see for the report).

Being realistic, not every patient survived that, but a 2022 nonprofit company's promise to make less costly biosimilars, including the three bestselling insulin analogues currently sold in the U.S., combined with a number of other biosimilars due to hit the market in 2024, all led to the March 2023 announcements (catch my coverage at for more) that the three biggest branded insulin-makers announced they intend to slash insulin list prices and basically opt out of the PBM commercialization model since it had already been eating into manufacturer profits anyway. 

In 2022, Lilly told investors that one-third of its U.S. Humalog sales was its cheaper, unbranded version, hence Lilly concluded that it could realistically survive without the PBM's after all. Rival Novo Nordisk has also admitted to its company shareholders that the company's U.S. insulin margins had plunged into the negative territory starting in 2017 due to PBM rebating, so they were also eager to opt out of the PBM commercialization model as well. Realistically, that meant Sanofi had no other alternative but to follow-suit, but remember: back in 2020, Sanofi basically cried to the Wall Street Journal about the rebate-driven system which had made the insulin it sold in the U.S. only marginally profitable anyway (see for more). In other words, all three insulin makers really just needed a push to opt out of the PBM commercialization model for insulin. The advent of cheaper biosimilars provided them a convenient excuse they needed.

Which brings me to patient resilience. The reality is that patient resilience is really the key to successful survival with any chronic disease, and especially Type 1 diabetes. Not being resilient could potentially be fatal. In that way, it's not glycemic management (per se) which differentiates the cadre of Joslin Medalists, but instead its been patients' ability to "roll with the punches" and be flexible enough to successfully navigate the never-ending changes required of patients. 

Having decent glycemic management can help, but realize that provides no guarantee, unfortunately. But having flexibility and adaptability is essential if you expect to live long-term with a disease like Type 1 diabetes. You need to be endlessly adaptable to whatever changes either with the illness itself, or perhaps equally important, what living in a predatory healthcare "system" (as the U.S. healthcare delivery system operates). That, in my honest opinion, is equally as critical as your HbA1c, even though no endocrinologist will admit that.

As I approach my half-century milestone, I found two resources on transitioning into Medicare (I have 11 more years to go), and the best among them was from JDRF at (a less helpful document can be read at, although I found the JDRF article contained more relevant information than the old DiabetesMine article, which encouraged patients to consider a Medicare Advantage plan, and my friends already on Medicare tell me that's actually a terrible recommendation, rather they all recommend a supplemental Medigap policy).

Author P.S., May 9, 2023: A while ago, Kerri Sparling solicited a number of diabetes old-timers like me on Facebook for their input on an article she was writing for diaTribe News. I was unsure when her article would be published. Today, her article was published and I was quoted in it. To read it, visit to see it.

1 comment:

Scott K. Johnson said...

You've long been an inspiration, Scott! And I'll second your nomination of resilience being a key to success. Thanks for sharing so much of yourself and your story with the world. It makes a difference!