It’s been almost a week and I haven’t heard hardly a peep about the FDA approving the first islet cell infusion treatment for T1, branded name Lantidra. I’m slightly obsessive about medical research, and I’ve never even heard of this CellTrans company who developed it. I never even saw them on ClinicalTrials.org. While other companies are focused on methods that don’t require anti-rejection drugs, these guys ran in and got the dirty method approved while nobody was looking. So, while it’s certainly not the dream we’re all hoping for, it is the first FUNCTIONAL cure for T1 on the market. It’s not “5 years away” anymore… It’s today.
It’s indicated for the hypo unaware, who basically might die otherwise from insulin overdose. It seems to me, though, that it’s likely to be used off-label by anyone who’s in dire straights due to their difficult diabetes.
I haven’t been nearly as active here as I once was because I’ve really been struggling with my own T1 the last year or so. For almost 10 years now I’ve had terrible inflammation and a myriad of miserable symptoms that arise from that inflammation . Absolutely no doctor had been able to help or diagnose why. We finally figured out late last year that I’m allergic to the lab gown recombinant DNA insulin we all use. ALL OF THEM. It’s the process by which they’re made I’m allergic to, not any particular ingredient. I have a histamine intolerance, likely caused by mast cell activation, which means I have an allergic reaction to anything fermented/aged with bacteria, amongst a mile long list of other things. And the insulin we use is churned out by genetically-modified, histamine-producing bacteria. Most people can handle histamine… Turns out, I can’t.
So what’s a T1 who’s allergic to the drug they need to survive supposed to??? The FDA banned animal insulins in 2006, and it’s nearly impossible to find in other countries anymore either, because of it’s unpopularity. There’s only 1 company still manufacturing it and it’s simply not an option I can afford. It’s essentially the bespoke Bugatti of the insulin world, even though it’s the oldest formulation. Supply and demand. So basically I’ve just been taking massive amounts of antihistamines, rationing my insulin, and trying to cope with the symptoms. Ironically, the antihistamine diet I have to follow is pretty high in carbs, too. Plain ol’white flour and starches are amongst the safest foods. A1c is up from 5.4 to 7.8. It’s all done a number on my head, as if living with this pain, inflammation, brittle/fluctuating insulin needs, and all the other fun that goes with diabetes wasn’t enough on it’s own… Basically, this incredible, healthy lifestyle I thought I was living before had been killing me!
I’ve been holding out hope that Vertex comes through with something quickly, so that I can start producing my own insulin again! And desperately hoping they don’t get eaten up by Big Pharma and “disappeared”. Eli Lilly just bought Sigilon, another islet cell therapeutic in the works , so I feel like we may be kissing that one goodbye.
Personally, I’m terrified and thrilled at the same time over this new Lantidra. I know most T1s wouldn’t even consider a treatment that requires anti-rejection drugs, but I’m seriously weighing the pros and cons. 100% of the trial participants had severe adverse reactions to the anti-rejection drugs. EVERY. SINGLE. ONE. And some dropped out of the trial because of them. But most of them persisted despite the side effects. Most thought the benefit outweighed the risk. I’m seriously asking myself if I want to risk cancer in the long run to be free of this pain today??? Or do I keep enduring and wait for better? What if Big Pharma never lets better see the light of day?