Only just stumbled across this. JDRF has changed its name to
Curious what reactions y’all have. Throwing no shade on them, they have been a historic advocacy group, but their very success locked in the association between age of onset and auto-immune diabetes for decades. Probably immovable now. A little annoying on the personal level (“Oh, I thought only kids got that”) but more consequential in that it still colors perceptions and diagnoses at the medical professional level. “You’re too old to have Type 1, Metformin plus diet’n’exercise for you.”
So the new brand addresses this. Somewhat.
A condition that was once diagnosed as Juvenile Diabetes (the “JD” in JDRF) is now medically known as type 1 diabetes (T1D) and impacts all ages and stages of life.
But…
Type 1 diabetes (T1D) is a chronic autoimmune disease. This means that it doesn’t go away. Anyone can be diagnosed with type 1 diabetes at any age, though it usually is diagnosed in childhood or adolescence.
And they actually still lean into the “juvenile” thing pretty hard in the site imagery. Lots of pix of kids and their moms or dads. Which I get. I mean, it’s a stronger pull emotionally, and if fundraising is what you’re about that’s what you go with.
But I still go back to the day I was dx’d, age 28, 1983, when I too was of the “only kids get that” mindset, and the doc told me about the age-of-incidence thing and why the diagnostic term was going to be changed to “Type 1” soon but that hadn’t happened yet, so my chart would be marked “juvenile type.” Allowed my dissertation adviser at the time, a Brit with the wry humor of his kind, to make a pretty good quip when my dx meant I had to seek an extension on my seminar paper: “It must be even more annoying to get the juvenile kind.” But still it does seem like the confusion about this isn’t going to just go away any time soon. Or ever…
Type 1 diabetes (T1D) is a chronic autoimmune disease. This means that it doesn’t go away. Anyone can be diagnosed with type 1 diabetes at any age, though it usually is diagnosed in childhood or adolescence.
I think an argument could be made that their statement is fair.
Consider that roughly 75% of the U.S. population is over 20 years of age.
While twice as many are diagnosed over the age or 20, they make up 3/4 of the population.
So it depends on whether you are talking about totals, or percentages. Like I said, you could make an argument that their statement is fair.
I got the email. It’s marketing; y’all have to have the right name! JDRF doesn’t cut it because it is an acronym and they want to market in the real world where people do not, in fact, use acronyms; no one says “FBI” they say “the Feds”, etc.
I’ve never thought of them as “JDRF”; I’ve always thought “Tidepool” but I can understand why they wouldn’t want to use that.
This is just about them changing their name; it’s nothing to do with how they present T1. That’s not changed.
I’m not a fan of their change but that’s because their discourse forum isn’t as well maintained as this one and the rebranding was poorly implemented. Y’all run an accessibility check on the site (e.g. userway.org) when testing upgrades before letting them go live, right?
I agree with all the comments. Better if they and the ADA focused their energy on the actual humans diagnosed with diabetes rather than currying favor with lobbyists and special interest groups. What a boost they could be to lowering drug costs, making technological advances available to low income individuals. Too much to hope for?
One thing I think would be of great benefit, in sync with the name change, would be a more concerted effort around the issue of mis-diagnosis of adults that is in large part grounded in decades of the “juvenile” misnomer. Again, it’s not just the public perception I’m concerned about but the medical one. One of the most frustrating things I’ve witnessed for years on TUD and other DOC platforms is not just how many misdiagnosis cases there are, but how little response there is from the institutional medical side.
The Breakthrough T1D statements explaining the name change are relentlessly anodyne, like the one I quoted above, as if to say “Hey, we finally got around to updating this 40 years late, but it’s just to make our brand a little slicker, doesn’t really have any medical implications or anything.”
This is SUCH a missed opportunity. I guess that’s the main thing I’m responding to. Again, my dx story back in '83—it was decades before I even heard about adults being mis-dx’d on the basis of age alone and realized how lucky I was to get a young doc who was actually up on this stuff and knew about the terminology change. The whole point of the terminology change was to correct that age-of-onset misperception, yet it lives on as a kind of zombie fact even in the minds of medical practitioners themselves, who have no clue as to the absurd irony embedded in saying "You’re too old to have ‘Type 1’"!!!
Unlike the forever-five-years-off cure—which yeah let’s do that, of course—this is a problem in the immediate term, and there are immediate practical things that could be done about it. For instance, why isn’t it standard diagnostic practice anytime any adult presents with diabetes symptoms to just routinely run c-pep and antibody testing before assigning “type” and treatment regimen. Sure, tests cost money. So does NOT testing. And that IS the standard of care in other countries, as someone recently posted here is the practice in Spain. Yet there seems to be zero awareness on the institutional side that more than a change in nomenclature (the point of which still seems to elude a LOT of people) is called for.
Which might could happen with a little organizational/institutional backing from a group like—I cast about at random here—the erstwhile “JDRF.”
I feel like JDRF does work with “Cure” based research, which doesn’t speak to me as much as the practical concerns of ADA. JDRF is primarily a research org, right? Maybe I’m mistaken.
As in “Research Foundation,” yeah. Funding it, anyway.
Again, it’s just the passivity around the implications of that name change that I find so disappointing. Helping fund research for a cure is great. But aren’t they an advocacy organization as well? The old name certainly played a large part in the broad misperception of auto-immune diabetes as exclusive to kids. They’ve struggled with that fact, and I’ve worked in brand marketing so I know it can be a perilous thing to break with an established identity even if there are reasons for doing so. But that’s all the more reason to deal with the full implications when you do finally decide to embrace it. It’s a tectonic shift in the wider D community of a kind that doesn’t come along very often. It’s not too late to take advantage of it. I posted a note over on their forum to this effect as well.
You raise a good point. Maybe JDRF is primarily a research advocate and ADA has a much broader advocacy focus. Maybe you have identified a problematic side effect of an organization having too narrow of a focus. Maybe they lack some perspective about the consequences of their actions on the wider landscape.
Disposable syringes became standard (disposable syringes where available, but glass syringes were still commonly used)
Home blood glucose testing
The invention of real basal insulins, such as Lantus, Levemir, and Tresiba, instead of the zinc suspension NPH types
Insulin based on recombinant DNA rather than garnered from pig or cow pancreases
Rapid insulin instead of the slower stuff
CGM’s
Insulin pumps
Closed-loop systems
The use of the A1C test to measure control
No, the organization formerly known as JDRF did not invent all of these. But they were certainly instrumental as a force for development, awareness, innovation, and discovery. Their research dollars contributed to inventions like these.
They were advocates before we had any others.
They did more during the past 50+ years to further our treatment than any other single non-profit organization. Without their presence, I am sure we would be in a much worse place.
I upvoted you though I disagree quite strongly on some elements of the list. Criticizing in the absence of constructive comment is an unforgivable sin, so I’ll give my list but some background.
I entered the stage, scene left, around 1972. At that time I was sent home with a glass syringe, a container of five (IRC) steel 18 gauge needles (mighty things), a pack of 50 clinitabs (for measuring urine blood sugar) and a pack of ketone test tablets (no use for anything whatsoever). I also had prescriptions for regular insulin (porcine IRC) and PZI (protamine zinc insulin - one of the hagedorns), bovine IRC.
So what broke through (other, of course, than acne; I was a 12 year old boy)?
Disposable syringes. OOOH, no more fear of dropping them on the floor (remember I was sent home with just one glass syringe.)
Nothing, for a long time.
Humalin and Novotard; both were much more manageable than Regular and PZI for me, but that’s just my experience. Novotard is an NPH.
About the same time blood glucose tests. I had this really neat pen; it really did look like a pen. I could plug a test strip into it and it would output a number on the really small lcd screen. Hey, I’m vain!
Nothing, for a long time.
The Omnipod (like I said, I’m vain; you want me to walk round with tubes sticking out of me like the bad gal in Alien?)
CGMs that actually worked (I tried and failed with the Dexcom G4.)
AndroidAPS
When I first got a real job (1982 IRC) I had to specify when I wanted to take my pension. I said when I was 50 (the lowest number available.) Despite all the breakthroughs I did in fact retire when I was 41 (I struck gold) and, because of numbers (6…8) I’m still alive today. (I was born in 1960.)
We still have to do much more at the T1 face; pickaxes are required. We can break through, not a cure but actual systems that work and, maybe, give us better BG control than many non-T1s my age. It is still going to be a lot of work.
I was on the JDRF UK website recently because BBC Radio 4 had asked JDRF to talk about a Guardian article that was less exciting than its headline. TL;DR Some insulin research got funded.
Way more notable is the JDRF UK website does a much better job focusing on adults. Their FAQ about the branding change is more upfront about the reasons why.
Juvenile Diabetes is no longer a clinically used term. 88% of people living with type 1 diabetes are adults. We need a brand which reflects this reality to engage more people in the T1D community and generate more support for our global mission. We are the same organisation—but with our purpose more clearly stated to be inclusive of the whole community.
Global community insight confirmed, and staff and senior leadership agreed that ‘JDRF’ perpetuated misconceptions, with the word ‘Juvenile’ alienating adults, and the word ‘Research’ failing to capture the full picture of what we do.
Our focus has always been supporting anyone affected by T1D. Our new brand makes that clearer.
No, there’s nothing about “juvenile diabetes” going out of style less than 20 years after the foundation’s creation and the current estimated of 40% of adults onset T1D that is misdiagnosed. They also fail to mention that T1D has been declared as a stupid diagnoses because it defines a disease by its pharmacological treatment since about the same time as “juvenile diabetes” fell out of favor in the 1980s. And of course they don’t, rebranding is like a magician saying look over here because I don’t want you to see what is doing on over there.
We can learn from their mistakes. You could offer to allow redirecting their forum to this one. The crickets are deafening over there and clearly the admins don’t have… something that they need to clean up their Discourse. Social Media keeps making forums like Tudiabetes a less popular choice for people looking for information. Are we making sure clinicians know we are a safe place their patients can learn about diabetes, navigating healthcare, and even the occasion phone OS update? Are we inviting researchers to come talk about what they are working on and get moral support because 70% (or is it closer to 95%?) ends in failure? Heck, Beyond Type 1 could write a requirement into their grants and it might be the easiest checkbox for the researchers.
