Campaign to End Diabetes Stigma

Currently, there is a global effort to pledge to make the world a more supportive, understanding, informed and caring place for people living with diabetes by eradicating "diabetes stigma". This has been a matter which Renza Scibilia has invested considerable effort to address (catch her post at https://diabetogenic.blog/2023/07/31/sign-the-pledge-to-end-diabetes-stigma/ for details) and I wish her well in the venture. To sign the pledge, visit https://enddiabetesstigma.org/.

 

Diabetes stigma is something I've been forced to endure for nearly a half-century (I was diagnosed with T1D in 1976; you do the math). When it comes to diabetes, ignorant people feel entitled to shame, blame, and disrespect people with diabetes of all types. These are the same people who use diabetes as a lame punchline in bad jokes on TV, or make irrelevant comments like if a T1D just ate better they could go off insulin which is a falsehood because of the etiology of their disease.

Make no mistake: I'm as sick of d-stigma as many seasoned diabetes veterans are because I've endured it for nearly 5 decades, but I have also grown to disregard lack of support or understanding because no one fixed the issue for me. Hence, I no longer care what other people think of people with diabetes. Its also no longer a top priority for me to fix personally. I care about the issue, but its just that as an issue, it's going to have to be something the younger crowd of diabetes advocates work to fix and they have my support in doing so. I just can't and won't personally do any heavy lifting on the matter.

D-Shaming Sucks, But I've Already Done Plenty for the Community, So Others Can Fix It

Over the past 40 years, I've done a LOT of advocacy work for the diabetes community. Although insulin has been on WHO's List of "essential medicines" since that list was first published in 1977, I did take on getting insulin analogues added to the World Health Organization's (WHO) list of "essential medicines" in the 1990's. And yet, since then, we have seen repeated accessibility problems on a worldwide basis due largely to prices. I can recall when Novo Nordisk went on a global acquisition spree, buying-up many formerly independent insulin manufacturers from Brazil to Eastern Europe. That really should never have happened, but it did. Access remains an issue on a worldwide basis, including developed economies like the U.S.

People outside the U.S. were actually surprised to discover that in the U.S., patients faced a severe insulin affordability crisis until very recently (see HERE and HERE for more). As advocates, we were able to get insulin reclassified by health plans as a "preventative treatment" classified by the Internal Revenue Service which only happened in 2019. That made insulin, for the first time, eligible for pre-deductible coverage which was not true before that, but it then took several more years to see that adopted on a more widespread basis as health plans were renewed.

Since then, I've also invested considerable effort working to partially dismantle a crooked, profit-driven healthcare U.S. system whereby patients with deductibles to satisfy were charged hundreds of U.S. dollars for a single vial of insulin which was far more than their own health care plans paid. I'm pleased to say, in March 2023, that not-so-little kickback scheme finally started falling apart before our eyes, but none of that just happened. It took a lot of behind-the-scenes work to make that happen, and unfortunately, the patient community does not always appreciate just how much underlying work was involved in accomplishing those things. But you need to be satisfied that you have accomplished something (even if its only incremental) which needed to be addressed.

But, as I said, it took a lot of behind-the-scenes work to make it happen. Countless people were involved in fixing that problem in the U.S. We can really thank the advent of a bunch of biosimilars expected to receive FDA approval in 2024 (Sandoz' partner Gan & Lee even revealed what its Cost of Goods Sold was!) including three from a nonprofit drug company which said it would charge no more than $30/via or $55/box of 5 prefilled insulin pens) before they even had the courage to tell corrupt PBM rebate aggregators to go fuck themselves which occurred in March 2023.

That was enabled when in mid-2022, the U.S. Federal Trade Commission began formally studying the PBM industry which emboldened big insulin makers to slash prices without fear of petty formulary exclusions by PBMs. But big insulin makers fed that with quarter-after-quarter increases in rebates paid to secure formulary placement for years. In 2020, Novo Nordisk revealed to investors that it was paying-out 74% of its gross U.S. margins as rebates paid to PBMs required to secure formulary placement. Come on! How stupid does a company have to be to enable PBM formulary managers just have 74% of its gross margins? And, at the same time, the company's U.S. insulin margins had fallen, on average, by 12% per year between 2017 and 2021. You don't have to be an accountant to realize that's really stupid, bordering on incompetent or worse, corrupt.

Since then, we have seen an obvious shift in PBMs who previously enriched themselves on enormous insulin rebates, and instead start collecting rebate kickbacks from Dexcom paid to them in order to "exclude" rival CGMs like Abbott Freestyle Libre 3 which many would argue is far superior to Dexcom G7 both in terms of functionality, and patient out-of-pocket costs because of its longer wear-time means it is less costly for patients to use.

Before that, from 2016-2017, I worked tirelessly to get the FDA to relabel CGM devices from "adjunctive" to "therapeutic" for which insulin dosages could be made with the ultimate goal of securing CMS/Medicare coverage for CGM's for seniors on Medicare which CMS ultimately did. Truthfully, I anticipated before too long, I'd be a senior covered by Medicare and I wanted to be damn certain I could still get coverage for a CGM device given that all insulin on the market has an efficacy failure known as hypoglycemia. Many seniors aged into Medicare and had to say goodbye to their CGM unless they paid cash for them. Its not that CGMs are so reliably accurate (because they are NOT), but the devices provide a lot more data-points upon which dosage decisions can be made. And, Libre 3 provides even more data points than Dexcom 7 because it updates readings every minute compared to only every five minutes for Dexcom.

For me, battling the "stigma" issue is a priority I feel comfortable in entrusting to a younger generation of people with diabetes to help fix. I've lived for a half-century with stigma, so I'm pleased to let a younger generation try and fix that problem.

To be sure, there's a LOT about diabetes treatment that remains broken. A messed-up naming convention is a core part of the problem. For example, why not abandon diabetes "types" and instead come up with disease names based on etiology? That way, Type 1 diabetes (T1D) could and SHOULD be called "autoimmune diabetes" to make it unequivocal how the disease originated in the person. Today, I avoid using dumb acronyms like T1D and describe myself as having autoimmune Type 1 diabetes. No medical professional can possibly fuck that up.

Blame and shame are currently a central part of diabetes management because the reality is that doctors have discovered a lot about the illness as time passed. Prior to that, they merely stated their non-scientifically validated opinions, some of which were later proven to be false. But after nearly 50 years (in 2026!), I have learned to ignore the ill-informed comments from people who are clueless about diabetes and don't really care to learn anything, hence I avoid the entire education process because I'm just tired of being forced to teach everyone (including those who don't even care to listen) the facts all the time -- frankly, I'm sick of it and would rather live my life and be left alone.

That said, if someone who aims to fight diabetes stigma would like me to share some diabetes war stories, I'm happy to share some of what we endured (and maybe learned) with previous battles hopefully to better prepare them for what to do when things don't work out the way they hope (and there will be some battles that do not work out; its part of the learning process). The main point I would share is the reality is that the advocacy is always going to be an ongoing effort; its never just cross the finish-line and its done. But this is a good place to begin!