… So I do believe a few of them. But very few, and always with a healthy amount of cynicism. What I NEVER believe is the timing implied in the news releases—this brand new technology supposedly will give us this or that advance “soon.”
Here is why I think you should keep a healthy amount of cynicism. The example of such a new technology is Raman spectroscopy, which promises, potentially, noninvasive glucose measurement. I had to mention it because I actually recently posted something about it: Non-invasive glucose monitoring from MIT
I heard about it first in 2015 (the year my son was diagnosed as a T1). But it had been in the news since at least 1997:
The $1,000 question is—after 28 years of technology development, when, if ever, will an actual Raman spectroscopy portable CGM device appear on the market?
I don’t mean to say it will never happen. What I do think, though, is that 99% of what we read is hype. As someone who has worked in technology development for 30+ years, I know it takes a very long time to take a technology from lab to market. So we are better off assuming nothing until we see something on the market.
All the more important for us all to support We Are Not Waiting initiatives of all kinds. We cannot expect much from the regulated world or from the medical device industry—we can count much more on our community.
I was a test subject for a company trying to develop a device using a non-invasive visual sensor clipped onto your ear lobe, and I can only date it as prior to 9/11/01 based on where I was working at the time. So there was an attempt to productize this technology even back in about 2000. It was the only time I volunteered as a test subject (I had attempted to volunteer for the DCCT but was disqualified because of a lack of retinopathy) and I found it strange.
Strange because my BG was fairly low when I went in, so I assumed this would be perfect for their testing. But instead of testing my BG as it was, their protocol was to give me glucose to cause a high, then test once my BG reached whatever level they wanted. Just seemed like a wasted opportunity for them. Anyway, that company disappeared soon after.
Another technology that has seemed tantalizing for a very long time is the encapsulation of pancreas cells to prevent immune response destruction. I talked to a researcher at Joslin who was working on that (in dogs) back in the 1980s. That is still talked about today, but human trials have never done well.
I actually disagree with this last statement. The Not Waiting group used breakthrough technology developed 100% by the medical device industry. Not Waiting group did nothing to develop the pumps and CGMs that were tied together with their software. The medical device companies were clearly moving in the same direction and released their devices shortly thereafter.
Where the Not Waiting group was innovative was their ability to write the software and release it in a shorter time scale not constrained by FDA approval. They have been similarly unconstrained in their ability to release new version with new features as often as they want (very often) sometimes without much testing.
I absolutely agree they should be supported, but don’t think we should overstate their contribution.
I remember it being referred to as the “dream beam” back in the 90s and it does seem destined to remain a dream.
That said, I agree with Jag. Yes, it was a long time coming and yes it can be glitchy and imperfect, but CGM is revolutionary and as far as I know brought to us by the lucrative medical device industry.
This is why I’m hesitant to use those non-approved apps. How can I trust they’re indeed safe to use?
Yet FDA approval is no excuse for the terribly basic apps that only work on OS version X on like 5 devices released 3 years ago and the total lack of innovation by manufacturers themselves.
Sorry if I implied that I don’t trust the code, because I very much DO trust it. I’ve been using xDrip instead of the receiver or Dexcom app ever since I’ve been using the G6 and it has been extremely reliable. And as you note, much more feature rich. I love my xDrip CGM phone and watch app.
You get to choose how conservative you want to be with installing new releases. Some might want to receive every new tweak as soon as it is released and install every nightly build so they can live on the “bleeding edge” of software releases. But once you have a release you trust you can stay on that as long as you want, I think Eric and I’m sure others do that as well. You can choose how adventurous you want to be; if you don’t care about the new features and fixes added, then don’t upgrade at all, or don’t upgrade until it has been out long enough to receive a sufficient amount of community testing.
I also believe the contributors are good, qualified programmers who “eat their own dog food” - in other words they use this software themselves to stay alive, so they are necessarily highly conscious of maintaining a safe stable code base. I would be very comfortable with the quality of the code; in fact you get to actually read the code yourself if you have any concerns or questions, something you can’t do with commercial code.
I am an old former newspaper reader. Prior to the internet headlines were an earlier form of clickbait. They were often misleading hype to get the reader to actually read the article.
As to diabetic technology or medical advancement articles in non-peer reviewed journals, both the headlines and articles are often hyped up, emphasizing one thing in the original study that was really inconsequential and possibly even dismissed in the conclusions.
When you read the original papers you will, I’m going to say never, seldom find the authors of the study making outrageous claims. They just don’t do it because their reputations are on the line.
So called science reporters are a whole ‘nother animal. They will grasp on anything that is sensational. I think they must’ve been recruited from marketing and advertising departments.
True—but the diabetic community has released numerous electronic devices (mostly specialized radios) since then to enable the many different closed-loop schemes. These devices have been extraordinarily helpful to many of us. We have purchased, in the past 5 years, probably 5-6 such devices. And, btw, support has been great!
In fact, at the time, and for quite a while, commercial companies felt it would be forever impossible. The FDA created a special group, with two leaders, in response to We Are Not Waiting, which was specifically focused in enabling closed-loop algorithms. I attended two of their presentations. Based on what they said, it is not certain that we would have had closed-loop systems that are FDA-approved even to this day. The group led to significant changes in FDA processes and policies that were required in order to make closed-loop control approval possible.
So, in reality, We Are Not Waiting could well have made commercial closed-loop systems possible. While, in most cases, the fundamental technology needs to be developed in universities or research centers, the new era we now belong to in techdev means that much more is possible in small batches and made by concerned scientists or engineers.