In June or July of 2026 (I can't remember exactly which), I'll become eligible for Joslin's Half-Century Medal, awarded to those who have lived with Type 1 diabetes (T1D) for 50 years. I still haven't decided whether I'll apply for it or not, but the milestone marks something noteworthy: a half-century of survival—more importantly, endurance—and learning to navigate life with a condition and a U.S. healthcare system that prioritizes corporate insurance company profits over patients, both of which have shaped a big part of my life.
Although I no longer involve myself in every advocacy initiative that comes along, I'm still not done with advocacy yet. I've simply become more deliberate about how—and where—I invest my advocacy time and energy.
Choosing My Battles
For years, I participated in the JDRF (now Breakthrough T1D) Walks to Cure Diabetes and raised thousands of dollars for the organization. I still support the cause, but I don't participate as regularly as I once did. Sometimes I have other plans, and that's fine (after all, diabetes certainly isn't my whole life). Children with diabetes often take center stage in fundraising campaigns, and lobbying events such as Breakthrough T1D's Children's Congress, and they probably should—kids are pretty persuasive spokespeople. But we as adults with T1D actually vote. We bring a different kind of power to the table, and our perspectives matter too (although it might be nice if Breakthrough T1D acknowledged that, and also made more of an effort to actually harness it, and maybe someday, it actually will do so).
My advocacy these days is more focused, personal, and often rooted in my efforts to correct the historical wrongs I've endured first-hand of living with T1D. That includes pushing for accountability at both federal and state levels—whether through formal complaints to the FTC, or urging New York's Attorney General to enforce the violations of the state antitrust law known as the Donnelly Act against PBMs operating with impunity. To the best of my knowledge, I was one of only a few patients instigators in the diabetes community advocating for FTC action (during its 6[b] study, I even emailed back and forth with then FTC chairwoman Lina Khan), and I wrote about that effort in great detail here: https://blog.sstrumello.com/2025/01/why-i-pushed-for-ftc-litigation-against.html.
The Pain of Enduring Forced, Repeated Non-Medical Switching
One of the most traumatic experiences in my early years with diabetes came during the involuntary shift from animal-derived insulins to the so-called "human" biosynthetic insulins, produced via recombinant DNA technology. These were promoted as advancements, but in truth, they offered NO therapeutic advantage over what came before—and up to ten percent of patients globally experienced serious adverse effects such as hypoglycemia unawareness according to a number of different peer-reviewed journal articles.
I was one of those patients.
Around the age of nine, I started experiencing terrifying low blood sugar episodes that often came out of nowhere—no warning signs, no symptoms, just sudden, dangerous crashes. And remember: back in those days, we didn't even have blood glucose meters to determine what was happening, and CGMs didn't exist. When I tried to explain what I experienced, instead of being heard, I was blamed—as if I was somehow making it all up, or else I was to be blamed for doing something wrong. It was incredibly isolating. Years later, I discovered I wasn't alone. People from all over the world—Canada, Australia, the UK, Germany, Switzerland, the U.S.—described going through the exact same thing when they were involuntarily switched to these so-called "human" insulins. We weren't imagining it. We were collateral damage in a system more concerned with profits than patients.
After the discontinuation of Iletin S and L, the cycle continued: next, Humulin S and L eventually disappeared too, and for a time, we were stuck with the same inferior alternative products such as isophane (NPH) until those were eventually replaced by analogue insulins a number of years later. These new products were marketed as superior, although their timing always just happened to align with expiring patents. I promised myself that if this kind of forced, non-medical switching resulting from manufacturers "retiring" insulin was to happen again, I'd push back.
Levemir's "Retirement" and the Next Fight
In November 2024, it happened again. Novo Nordisk announced it would discontinue Levemir (insulin detemir). I wasn't using it at the time, but I knew the business playbook extremely well, having been through it multiple times. I also knew that no company was developing a biosimilar for detemir—not Sanofi, Biocon Biologics, Sandoz/Gan & Lee, Amphastar/ANP, Lannett/HEC, Meitheal/THDB, or even CivicaScripts insulin efforts (GeneSys Biologics for glargine and lispro, Biocon Biologics for aspart), all of whom were known to be developing biosimilar insulins (and many were publicly-held corporations which listed the insulin biosimilars in their drug development pipelines, so it was not kept secret). It was an opportunity for a creative entity willing to think outside of the proverbial box; they would effectively OWN the still substantial market for insulin detemir and their competitors were ignoring.
While Novo Nordisk tried to suggest that Levemir was a rapidly-dying product, sales data suggest otherwise. Also, the rebate-contracting commercialization model favored by Novo Nordisk enabled Levemir to co-exist on a majority of commercial insurance drug formularies where Novo Nordisk insulins were preferred over those from Lilly, Sanofi or Biocon.
2022 Estimated U.S. Insulin Market Share & Revenue
Insulin detemir was the 4th bestselling insulin in 2022, and branded Levemir was the ONLY detemir product being sold. In 2022, Levemir remained significant, ranking as 127th best-selling drug in the U.S. with over 4.8 million prescriptions filled for more than 900,000 patients according to the Medical Expenditure Panel Survey (MEPS) 2022 produced by the Agency for Healthcare Research and Quality (AHRQ), Rockville, MD, while according to the consulting firm Close Concerns, insulin detemir generated nearly $650 million in revenue in 2022. The pie chart figures below are not all-inclusive, rather they reflect only the shares of the top-selling insulin varieties in the U.S. Data sources: AHRQ MEPS data procured via ClinCalc DrugStats Database and Close Concerns/diaTribe News.
That's when I was connected with Alison Smart, who founded the Alliance to Protect Insulin Choice https://alliancetoprotectinsulinchoice.org/. We teamed up to do something about it. Although Alison has been much more involved in day-to-day efforts (I said I would not be doing any "heavy-lifting" but would offer relevant perspective on issues as they developed), I've been able to share strategic insight and perhaps equally important, important information. Instead of waiting for a major manufacturer, we connected with a biotech startup—one with no current products but a genuine willingness to engage. Novo Nordisk initially stonewalled, falsely claiming that no company had reached out. Eventually, they agreed to speak with the startup, although it has not offered much help since. In other words, Novo Nordisk did as little as they could get away with doing.
It also suggested that Levemir was a rapidly-dying product. That's at best misleading. Thanks to the PBM sponsored rebate-contracting commercialization model, Levemir and Tresiba were able to coexist for many years, thus necessitating Novo's discontinuing Levemir in order to force patients who were not Tresiba users to switch against their will. Big PBM formularies don't usually prefer specific drugs—they prefer manufacturers who offer them fat rebates, enabling Levemir and Tresiba to coexist on most drug formularies where Novo Nordisk insulins were preferred. As long as Novo Nordisk's products are preferred, its older products remained available on-formulary in most cases.
We've explored a few possible paths forward. One is a potential FDA Rx-to-OTC reclassification for insulin detemir, much like how older human insulins are already being sold—enabling patients to buy them directly from a pharmacist without a doctor's prescription. Another is a low-cost, cash-pay prescription model through retail pharmacies or sellers like Mark Cuban Cost Plus Drug Company. Both are likely scenarios. But success will really depend on fresh thinking—free from deeply corrupt rebate entanglements and outdated assumptions about how insulin must be marketed and commercialized.
Quiet Influence and Strategic Nudges
My recent advocacy isn't only about insulin.
I've also followed the financial and strategic shifts happening in the diabetes technology space. In 2018, Johnson & Johnson sold its LifeScan blood glucose monitoring business to Platinum Equity for $2.1 billion. This past July, I wrote about how LifeScan quietly entered a Chapter 11 bankruptcy through a restructuring support agreement https://blog.sstrumello.com/2025/08/platinum-equity-plans-to-reorganize.html.
Meanwhile, Haleon—a consumer health spinoff from GSK—is now looking to acquire new assets https://www.thisismoney.co.uk/money/markets/article-15117131/GSK-spin-Haleon-eyes-Tylenol-takeover.html. LifeScan may not be a growth rocket, but it remains a cash-generating business. Despite the hype, CGMs still aren't covered by most insurers for patients with Type 2 diabetes who don't use insulin. That's why Dexcom is selling its new CGM, branded as Stelo, over-the-counter—and why Abbott sells an OTC version of its CGM known as Libre Rio. But these products haven't exactly taken off. Many consumers try the OTC CGMs briefly, then stop using them once they learn how their behavior affects their glucose levels. Low repeat purchases is not a great business model.
I don't know anyone at Haleon, but I still think if it is looking for acquisitions, then making a bid for what remains of LifeScan could be a good idea, therefore I sent a blind email to a half-dozen employees pitching the idea of LifeScan as a potential acquisition target—not because it's a rapid-growth business, but because its neither obsolete, and the business remains cash-generative. I'm not trying to close a deal—I just want to plant the seed of an idea in someone's mind who has the potential to tell colleagues who might be in a position to make something happen. That's what advocacy sometimes looks like: small, quiet nudges that might help shift the future. Whether it's a blind email to a potential acquirer or a formal complaint to the FTC, I've found that even subtle actions can plant seeds that grow into real accountability—especially when state laws like the Donnelly Act (New York State's antitrust law) offer tools when federal regulators ignore gross violations of fair trade laws.
Still in It, But On My Own Terms
After nearly 50 years with T1D, I don't show up for every walk or respond to every campaign—but that's not retreat, and it's certainly not giving up. It's an evolution. I advocate differently now: more focused, more strategic, and informed by decades of hard-won experience. I know the battles that matter to me, and I've learned how—and where—I can make an impact. That's the diabetes advocacy work I continue to do after a half-century of Type 1 Diabetes (T1D).
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