Day 19-

Let’s take a turn and talk about new and emerging therapies for T1D. The ones I am going to talk about today do not involve medical devices. Let’s start with smart insulin. They are working on a new insulin that is glucose responsive. Meaning that the smart insulin remains inactive until it senses glucose in the blood and that activates it to start breaking down the glucose until it is at normal levels again. This also means when your blood sugar is low the smart insulin is not active, thus it would allow the liver to release sugars into the blood stream to bring your BG up without the added insulin to bring it back down again which is what happens when you have T1D. This is amazing and began clinical trials in 2015 and is still in the trial mode. There are now other companies trying to come up with similar glucose responsive insulin in different ways. Another thing that has been going on for a while in Argentina and Switzerland is islet cell transplants by way of stem cells. Islet cell transplants have been going on for a while, the problem is that if you have T1D your autoimmune response kicks in and eventually can kill all the islets cells again AND you have to be on immunosuppressant drugs the rest of your life and those have some pretty nasty side effects. So the islet/stem cell transplant begins with your own stem cells and tricks them into mimicking beta cells, which produce insulin, but because they are not actually beta cells they are not killed off as quickly by the autoimmune response. They have found that also since they use the patient’s own stem cells the body responds better to the therapy. This procedure can take up to 4 months before the patient no longer needs synthetic insulin. Yes this is amazing right? Well, it is very expensive and only lasts for so long and that length depends on the individual patient’s immune system 5-20 years. Also, you have to be able to find a Dr. and medical team that is local to you for follow up care… most people can’t just fly across the world for a follow up appointment. So this isn’t practible or affordable for most people with T1D. Lastly I am going to talk about Dr. Faustman’s Lab and the BCG vaccine. This is the trial I was screened for in Boston. So Dr. Faustman has been doing autoimmune and T1D research for a long time. She found a protein that could be injected in mice and it would target the autoimmune infected T-cells in the body and kill them. Thus reversing the autoimmune response. She then realized that the BCG vaccine, the vaccine for tuberculosis that has been around for 100 years, was similar to the protein she was using. It is based on a similar protein. Thus began the trials. The beginning trials began in 2008… this is how long this all takes sometimes folks. Last year the lab was approved to begin human trials and they began this spring. You should know that the BCG vaccine is no longer given in the United States due to our low TB rates. It is still given to infants around the world and is a very safe vaccine. The trial is 5 years long and involves 5-6 injections of the vaccine over that 5 years with follow up appointments. This is all happening at Massachusetts General Hospital. The part of the trial I was screened for involved PET scans. I unfortunately did not have enough c-peptides left in my body to participate in this phase of the study, but I will be participating in another phase starting next year that is for T1D with little to no c-peptides left in their body. So let me say this again, this therapy would reverse the autoimmune response… let that sink in… YES, while they aren’t calling it a cure, it is a reversal. Yes, THIS IS HUGE. Why haven’t you heard about it? Dr. Faustman’s lab doesn’t directly receive any NIH funding and have raised all of the almost $25 million on their own or through small fundraisers. Also this is not a new drug… it has been around for 100 years, it is just a new context to use it. It should also be known that the BCG vaccine is already used to treat some types of bladder cancer and they are already looking into it being used to stop the autoimmune response in MS. I am going to let this all sink in for you. No one has cured any autoimmune disease to date. Now, just so you know, because I don’t have any c-peptides doesn’t mean this is going to work for sure, or that I will be able to go insulin injection free, but I figure even if I start producing some on my own, that is a hell of lot better than none. I am very excited about this but was a little hesitant to share it. You see most of us T1Ds are a little hesitant and cynical when it comes to new treatments and a “cure”. We have heard it all before and have been on the “cusp of finding a cure” for at least 10 years. 10 YEARS people!!! All the while we still need to do what we need to do to take care of ourselves, make sure we don’t have any complications, and try to live a long healthy life with T1D. Also all of this takes soooooooooo long. If I weren’t to be part of the study and say this all does work, it wouldn’t be approved, if it even does get approved by the FDA, for at least 5 years. So I am just crossing my fingers and I will believe it is all happening when I actually go to Boston for that first vaccination.