Discussion in 'Parents of Children with Type 1' started by Jeff, Jan 4, 2012.
Thanks for mentioning that. I suppose I'll need to check with my insurance.
This is a really easy design, both to monitor and control the CGM remotely. A secure link would be set up to prevent crossing of signals with another person's CGM. The problem is first that FDA approval would be required if anyone sold it to anyone else, and second, that I am not sure if Minimed's data protocols are encrypted, and if so, intercepting the signals might not be that easy to do. I think we need to leave this to the big players to get it right. Hopefully someday competition between Dex, MM, and whoever else will result in a product that actually does what we need.
Sounds reasonable, but I think I'd need to get a prior approval from insurance before taking the risk, just in case IBX handles this differently from other companies. Leah is considering using a tube pump anyway, though, so maybe switching to the revel makes sense anyway.
Our insurance covers both the pods and the infusions sets for the pump. We did pay OOP for the PDM, and we were planning on paying OOP for the pods but to my surprise they actually cover it, I only purchase one or the other. I've only purchases on 3 month supply of the pods... I'm waiting on the smaller pods (which I have heard will be out very soon) to reorder.
I mentioned the price of My sentry to my husband her had a look of on his face followed by a 'FOR WHAAAAAAAAAAAT?!"
Now, if I had an extra 3k hanging around I'd bite the bullet and get this. BUt for MOST people, its not that easy. Most of use don't have 3k hanging around just waiting for something to be bought.
I hope ths is the case. They reference in their press release that this is just the first in a new line of products that provide communication to other devices (roughly paraphrased).
You only get into "trouble" when you try to sell something that will modify settings on the pump remotely. Monitoring (or better yet "Intercepting") a signal for purposes of monitoring is 100% your right and is not controllable by an agency in this regard.
As for encrypted, so far in my testing it does not appear to be so. Think header information in the packet to ID source to the receiver. Very low end tech here.
Also, if one were to develop and release home brew electronics plans for the DIY'er to use that is their right. I have done this for many things over the years (admittedly not medical related) with no reprocussions or concern. It is potentially (and a GREY area at best) a concern when you attempt to sell such devices.
Just one more piece of data/area of concern:
While I wanted the MySentry ages ago, it was right when we began using MM CGMS. After using the current generation of glucose sensors I'm not in such a hurry. The current method for continous glucose monitoring (interstial fluid readings) has quite a few drawbacks. Its lead us to use the glucose sensors very infrequently if at all. I certainly encourage MM to develop a better CGMS system (read: better glucose monitoring idea) first before charging people $2000+ for a monitor to the monitor that has questionable results in the first place.
At the Black Hat conference last year a person presented information on how they could hack into a MM pump and remotely bolus. If the pump isn't that hard to hack into I'd think a read only receiver wouldn't be more encrypted than their pump.
Then why did Minimed need to obtain FDA approval?
It is really expensive! We are making the sacrifice. Things are crazy at our house -- we get up every 2 hours and Sebastian, who is 4, has been sleeping in our bed lately. I don't think we can afford not to get it. The lack of sleep is putting weight on and making us really grumpy. In between the 2 hours, sometimes we wake up hearing the faint alarms. His diabetes is pretty volatile right now. A year of cable television can cost the same as the Sentry. I am willing to make the sacrifice -- away with Whe Women of Atlanta, hello sleep!
response to Darryl
I like the brainstorming idea. I am trying to be reallly proactive about the BIG D (which used to mean dessert in our house?!). What's wrong with coming up with a home grown solution to this problem and then putting the blueprints out there for the world to see? Perhaps this will push companies to make a move! We have been waiting for this for way too long and from what I can tell, the technology is not that sophisticated. This isn't about money, this is about peace of mind. This is about helping everyone who is struggling to stay healthy with diabetes. I am starting to ask my really smart friends -- my engineering and computer science friends -- we can do this. Let's crack the code! What does everyone want in a remote monitor?
We are ordering...
Yes, we are making an order... the sacrifice is necessary, but as you said, we, too are going to try to submit it to insurance and will be graciously appealing should we not get approval. I just think we need to submit our opinions about the importance of monitoring our kids -- about alarms needing to be heard! The risk and price of not monitoring is far greater than the cost of this device! Insurance companies will get the hint! When you think about it, pumps aren't medically necessary, either. We could still just do injections -- it's about the end result, really. It seems to me that it's about what happens years down the road -- it is about what happens after you or your child has suffered too many seizures.
Sweet Dreams CGM monitor
Make sure you take a peak at the Sweet Dreams CGM Monitor that a parent designed for his daughter! He has the button pusher and everything. It is on You Tube!!! I love it! It is innovative and possible.
Here is the video, for anyone who is interested. I am really surprised that it wasn't picked as a finalist.
LOVE the video! That's EXACTLY what we need is competition against big pharma!
Thanks, Emma. I just sent this video to my hubby to see if he can design something similar and make it for us.
If I had the knowledge to make a device like this, I would want to be able to cancel the alarms on the pump remotely. This is a serious limitation of the mySentry IMO.
I could make the thing in the video. I am a machinist and if I've got drawings, I can make it. I might need some help with the electronics but if the schematics and directions are clear enough for me to understand, it shouldn't be a problem.
We aren't using the Dexcom anymore, though. It would have to work with the Guardian.
You have to be careful, though. The costs of the various components can add up in a hurry. It's not going to be anything near $2500 but it could be several hundred and time is money too. If I were machining parts for someone else I would want $50+ per hour for labor.
As a casual reader of this forum and having just read this thread, I have to assume that the community is insufficiently interested in actually helping to bring the Sweet Dreams CGM to more people? It works quite well from what I can see but no interest from the CWD community?
It is difficult for me to devote any time or interest to products that are in the prototype stage and do not have funding behind them.
I would also have trouble having faith in a product that was made by a guy and untested. If there were testing on the delivery and such, then maybe. But I cannot see any device that has potential to dose insulin and/or make dosing decisions on passing through FDA Approval without being picked up by a major company with bib backers.
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