“It’s Better Than Cool”

Last week, I had a phone conversation with Dana, the Executive Director of my local JDRF chapter and while on the phone, she invited me to attend the upcoming JDRF research update meeting they were having. Granted, for me to go was a two hour drive. I’m not good at driving distances… let alone in what I consider “big cities”. I made it there… 20 minutes late due to just trying find parking when I thought I was going to be 20 minutes early. Take note: this girl is a pure country girl. I had not planned on all of the extra time just being in a bigger city requires to get 2 miles down the road. But, alas, I made it. And I’m glad I did.

The presenter for the night was Doug Lowenstein, a member of the JDRF International Board of Directors. He was there to give us an update to what the JDRF is doing and how research is progressing toward not only finding a cure and preventing it from even happening, but also making devices and therapies that are less invasive, less complex, and less demanding on us,

“because we know, we know we are going to find find a cure, but know in all honesty  has to compell us to tell you that it’s not tomorrow, it’s not probably not in 5 years, it’s probably not in 10 years, so we we’ve got to keep people healthy… we gotta keep people healthy so when that cure comes, they’re not so beaten down by the complications of this disease that they can’t reall enjoy the experience of having that cure.”

Over the course of the presentation, he covered the five areas that JDRF is funding to make things move forward: Artificial Pancreas Systems, Beta Cell Encapsulation, Smart Insulin, Beta Cell Restoration, and Prevention. Right now, I’m only going to touch on the first two because, honestly, even though those two things covered about a third of his speech, they were the most interesting to me.

Doug Lowenstein giving the update about how the JDRF Pipeline works. – Photo by Beth McCrary

He spoke about Artificial Pancreas systems, to which he started the topic by saying, “This stuff isn’t just cool… it’s BETTER than cool“. A man after my own heart, I tell ya. Nothing gets me more excited than to hear about different devices that are being developed that are going to help us to live healthier, fuller. He spoke about the already available Medtronic 530G and the Low Glucose Threshold Suspend feature that it has, but he also mentioned and spoke more about the one that is in the works for the next update for Medtronic – the one with Predictive Alert Low Glucose Suspend, where the pump will respond to, not a threshold, but rather on the predictive alert that the patient is going low. Having already experienced first-hand how the 530G works with Threshold Suspend, saying that I’m intrigued and excited doesn’t begin to tell how I felt when he told about that one. He also touched on the other systems that are being developed by other companies that will handle diabetes in different ways. Ones that are either Treat to Range (where the system will regulate your glucose to stay within a specified range, say 80-180 or 80-160) or Treat to Target (where the system will be a bit more specific in that it will treat to your specific target, say 100 or 120). The goal? To have fully automatic multihormonal systems (since, you know, we don’t only not produce insulin anymore, but we also don’t produce amylin, and we need a bit of help from glucagon sometimes too).

Next, he spoke of Beta Cell Encapsulation. Now, one thing I know is that the DRI has been working on their own version of this biotechnology. But did you know there are also two other companies working on this as well? The company he spoke specificaly about is ViaCyte (click on the word and it will take you to the JDRF’s press release). In his words, it’s “almost science-fiction”. They take beta cells, put them in a capsule (about the size of a silver dollar, or quarter) – VERY thin, using cell-sourcing technology, place them in there. And we’re talking thousands and thousands of beta cells. The device is a semi-permeable capsule (allowing blood, nutrients, etc, in so that insulin can be produced) – but yet it’s protected from the autoimmune attack. Their first human trial, even though it’s in the very early stages, is expected to be later this year. If this works and succeeds, it will lasts 18-24 months “literally, without thinking of diabetes for 18-24 months.. not once”. Not surprisingly, it’s been tested in mice and has worked successfully for 15 months (which is actually about the entire lifespan of the mouse.. so they haven’t been able to test longer than that). Granted, we all know, mice get the best of everything.. sort of makes me want to be a mouse….but knowing it’s going to human trials has me excited too.

Now, some may think like I did for a long time.. sure.. these things are in the works and they’re getting funding for it, but they’ve funded things before for years and I don’t see where they’re making progress. And I’ve had to eat those words. Little did I know, the JDRF is what has been the key to getting CGMs covered by most insurances.

“The fact that CGMs are covered at all : again, entirely because of JDRF. Because that technology was out there, and insurance companies were not covering it. And so we went out and funded trials, all around the country.. 12 or 14 trial centers. The express and sole purpose was to prove to the health insurance industry that CGMs resulted in better outcomes for people with T1D, ergo, lower cost for insurance companies. That data is the foundation for why insurance companies cover CGMs at all. It’s not where it needs to be… but we’re a lot better off because of that.”

There are many things that the JDRF has it’s hands in all in the name of creating a better life for those with Type 1 Diabetes, and after going to this update, I was able to see and hear the things they are working on trying to get funding for to help us… to help me… to help those who have been diagnosed… and those who WILL be diagnosed. As excited as I am, it’s heartbreaking to still know that we are still even 10, 15, or more years away from technology alone that can help us… so no, a cure more than likely will not be here in 10 years. But to get to where they want to be… where want to be even in 10 years… even 5, they need the funding. They need us to share our stories with our senators and congressmen so that they will continually sign those letters in favor of renewing the Special Diabetes Program.  Last year, 270 members of the House of Representatives and 73 senators signed those letters and the SDP was renewed… but only for one year.  That time to renew is fast approaching.

Yes, all of these advancements and treatments that they are working on is way better than cool, but it won’t be cool if the reason we don’t get them is due to the lack of funding. We can do this. Please PLEASE take 5 minutes out of your time to go to the JDRF Action page and sign your own letter to your own congressmen know just how important this is to you. 




Filed under dblog, Diabetes

3 responses to ““It’s Better Than Cool”

  1. Done!! And I LOVE all the work the JDRF is doing to help….knowing they helped make my having a CGM possible = bonus!!!!

  2. Lot of exciting things going on, especially when it comes to ViaCyte and the human trial news that should be coming soon! Had a chance to hear Tom Brobson (a fellow D-peep, too!) at a local JDRF event recently, and it’s really encouraging to hear about so much. Certainly does give us hope of things to come, to know that they’re in the works.

  3. I remember another one of JDRF’s tech executives (I forget his name, shamefully) give a similar talk about a year and a half ago. For all the debate about what JDRF does and doesn’t do, and how much they invest in treatment versus cure research dollars, I think this talk – and your post – addresses it perfectly. They support lots of different research, and for good reason.

    Like any business, or any type of venture for that matter, one needs to have short-term goals as well as medium- and long-term. It’s reassuring to see JDRF has their sights set on all of them, even if the goals we see becoming reality aren’t the ultimate ones.

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