On June 4, 2024, the Type 1 diabetes nonprofit organization formerly known as JDRF (itself an acronym which stood for the Juvenile Diabetes Research Foundation) officially renamed itself "Breakthrough T1D".
See the press release at https://www.prnewswire.com/news-releases/jdrf-is-now-breakthrough-t1d-302163068.html for more). The organization also announced it on video below, or at https://youtu.be/X_kpioCJKXg?si=bTeDbHkUz1e21fJj
It will take me some time to get used to the new name, but in fact, I have lived through at least three of the same organization's name-changes over my lifetime of living with Type 1 diabetes mellitus.
The publication known as Ad Age (fka Advertising Age) ran an article about the re-brand entitled "Behind a Leading Diabetes Research Foundation's Rebrand" at https://adage.com/article/marketing-news-strategy/jdrf-rebrands-breakthrough-t1d-diabetes-research-foundations-new-name/2563581.
The migration to acronyms is at least part of the rebranding initiative although I have mixed feelings about those. "T1D" is not a particularly good name, but it does very clearly distinguish the autoimmune form of diabetes (Type 1 diabetes mellitus) from the far more common form known as Type 2 diabetes mellitus. The lack of understanding of the unique etiologies of different forms of diabetes has made accomplishing some public policy changes more difficult to attain, such as price containment for insulin.
People hear the term "diabetes" and automatically and immediately presume themselves to be experts because a distant relative or friend had "diabetes" and inevitably, the person thinks that if you merely lost a few pounds, your disease would simply disappear without any comprehension that a) no amount of weight-loss will eliminate a patient with Type 1's need for exogenous insulin and b) none of the "new" treatments which have emerged are even FDA approved for Type 1 diabetes (its insulin replacement therapy or death); all of them are only for Type 2.
When I was first diagnosed, "Breakthrough T1D" was still relatively new (in existence for a few years) known as the Juvenile Diabetes Foundation, or simply the acronym "JDF". At that time, Type 1 diabetes was still routinely described as "Juvenile" diabetes because an overwhelming majority of those who were diagnosed with the autoimmune disease were children (hence the term "juvenile" being part of its name). In fact, it wasn't until around 1973 that scientists even understood that Type 1 diabetes had a very different cause or disease etiology than Type 2 diabetes, and were not, in fact, the same disease, but unique diseases that shared similar symptoms.
In 2012, the JDF added the term "Research" to the organization name. At the time, the JDF Board of Directors Felt it was necessary to add "Research" to the name so they could more effectively lobby lawmakers in Washington by acknowledging that the JDRF was primarily focused on "research" and that was an effective name revision.
However, the old vestige of the old term "juvenile" term has come at some costs. In addition to adults too often being frequently misdiagnosed mainly because of their age, it also neglects the core reality that eventually, all those children with diabetes will grow up to become adults who are still living with autoimmune Type 1 diabetes mellitus.
That said, the original focus for JDF, JDRF or Breakthrough T1D was primarily on finding a cure. Improved treatments was intended as a stop-gap until curative therapies were developed and came to market. However, I was diagnosed with Type 1 diabetes mellitus (T1D) at age 7 in 1976. I will be eligible for a Joslin 50 year medal (should I choose to claim one) in just two years (2026). And yet in my assessment, there have been few true "breakthroughs" in my lifetime.
For example, around 1980 or so, we as patients were able to test our own blood glucose levels for the very first time when fingerstick glucose test strips and meters became available. It would take nearly another twenty years until the first continuous glucose monitor (CGM) came to market in 1999, and it took another decade until what was then JDRF bankrolled the peer-reviewed studies which laid the groundwork for widespread insurance coverage of the devices.
However, a persuasive business case for CGM in Type 2 diabetes has yet to be established for insurance company payers and that is not Breakthrough T1D's responsibility; it already did the work needed in T1D, but Dexcom and Abbott are on their own to make it happen for the more common form of diabetes.
The cost-benefit analysis is simply not there for improved glycemic control in T2D; the hypoglycemia alarms is what sold insurers on covering them for Type 1, but it came at a huge cost: CGM's cost payers nearly four times as much money, although the savings from ER treatments for hypoglycemia justified their coverage. But on Type 2, the cost-benefit of paying 4 times as much money over fingerstick testing for a patient who is likely to be covered by another company or Medicare by the time complications set-in mean the business case is not as compelling for Type 2 diabetes at this time. Dexcom and Abbott have shifted strategy, introducing a lower-priced CGM for Type 2 accomplished mainly by having longer wear-times for each CGM sensor. We shall see if the business case for CGM coverage of CGMs for Type 2 changes with lower prices. That is not Breakthrough T1D's issue to solve (it is for Dexcom or Abbott).
While insulin manufacturers will claim that the advent of recombinant DNA manufacturing was a "breakthrough", the peer-reviewed scientific evidence from Cochrane and IQWiG among others have unequivocally proven biosynthetic insulins was no breakthrough. At the time, the only way to encourage widespread adoption of the newer biosynthetic "human" insulins was by discontinuing the older, widely-used insulins. The biosynthetic insulins offered absolutely no therapeutic benefit whatsoever and a number of patients developed hypoglycemia unawareness from the biotech-made insulins which manufacturers attempted to claim was due to "patient error". In fact, it wasn't until 1996 that the Food and Drug Administration even approved the first insulin analogue which had a significantly faster time-activity profile and a few years later, approving a longer-acting basal insulin with less pronounced peak of activity emerged.
At the same time, the U.S. medical industry being driven primarily by legally-exempted kickbacks which cause Americans to pay more for the exact same treatments than every other developed country on earth pays has ballooned into a massive problem which the free markets have largely failed to address (although startups such as Mark Cuban Cost Plus Drug Company are starting to have an impact). So far, policy-makers have done nothing to address runaway costs, while big commercial healthcare insurance companies like United Healthcare have become unmanageable, money-sucking behemoths. At some point, lawmakers need to fix that mess, but until they do, Americans will continue to pay vastly more for healthcare than Mexicans, Canadians, Europeans, Australians and everyone else on earth for the exact same treatments. There, Breakthrough T1D can and arguably should play a bigger role.
Anyway, as for the rebranded "Breakthrough T1D", as I said, I am hardly new to the organization's name changes; this one is my third name-change so far.
My expectation is as it shifts focus away from the ever-elusive curative therapies, that the organization will step up its lobbying for effective policy solutions to ensure the overpriced treatment advances reach mass-audiences (and that means letting Dexcom and Abbott work on securing coverage for Type 2 diabetes without the help of Breakthrough T1D as they did in securing more widespread coverage for people with T1D), and instead address issues such as having a detailed action plan if one or all of the large, branded insulin manufacturers (Novo Nordisk, Lilly, Sanofi) decide it is in the best interest of their shareholders to simply abandon the commoditized insulin business. Having an action plan ready to implement immediately should that happen will enable us to raise capital quickly to acquire the insulin manufacturing business should that happen. We cannot risk losing any of them, even while shareholders may encourage divestiture.
I will trust Breakthrough T1D at its word when it says it will work for greater access to treatments and therapies for the T1D community. But I want to see proof of that!
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