[Diabetes-Talk] V-go insulin system

Tue Nov 10 00:06:37 UTC 2020

Yes thanks Veronica for that background information I did not know the history.
Patricia

Sent from my iPhone

> On Nov 9, 2020, at 3:29 PM, gary-melconian via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> Thanks veronica for all that.  
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Veronica Elsea via Diabetes-Talk
> Sent: Monday, November 9, 2020 3:19 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] V-go insulin system
> 
> The insulin pump group came out of a study done by a John Hopkins student who realized that more respondents to the survey were concerned about pumps than about meters. Previously NFB had formed an accessible medical device task force, which was addressing all medical devices, not even just diabetes. It was a great group and for about six months, it was the most hope I'd had. It was suddenly discontinued and referred to the Jernigan institute, where it has apparently just died. I was heart-broken over this one. I'm trying to give this group a chance, I really am. But I am afraid that we are going to be many years behind, again! But I'll give my all whenever I find an opening.
> Veronica
> 
> 
> "Guide Dogs, First Hand", Veronica Elsea's classic album is now available on iTunes, along with other music from her and from the Guide Dog Glee Club. 
> To learn more, visit:
> http://www.laurelcreekmusic.com
>                Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> Phone: 831-429-6407
> 
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Patricia Maddix via Diabetes-Talk
> Sent: Monday, November 09, 2020 1:02 PM
> To: Diabetes Talk for the Blind
> Cc: Patricia Maddix
> Subject: Re: [Diabetes-Talk] V-go insulin system
> 
> Regarding the committee, probably a couple of months ago Stacie Dubnow posted a note on this list serve saying that she was going to be forming a Insulin pumpinsulin pump accessibility work group and asked for volunteers to contact her. Several of us responded and that’s how the group was formed. You could check with her if you were interested in joining the group and I will include her contact information below. She had indicated that previously the NFB Had a work group addressing the issue of blood glucose meters but I do not know the outcome of that work group as I was not a member of this group at the time. Perhaps some of the people in this group that have been members longer know that information. She said that they have identified accessibility of insulin pumps as an area specifically that needs to be addressed and that’s what this work group is about.
> 
> SDubnow at nfb.org
> That’s what I know so far.
> Patricia
> 
> 
> 
> Sent from my iPhone
> 
>> On Nov 9, 2020, at 12:27 PM, Jeanette Kutash via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
>> 
>> Nor have any of us  on this list. We were waiting to hear that a committee was actually selected, and why is it only pumps that are being addressed, and not inaccurate meters, unavailability for some who qualify, or the good but not total accessibility of freestyle libre, to name a few issues. 
>> 
>> Those are my questions, Patricia, and I do look forward to your answers.
>> 
>> Jeanette
>> 
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of Patricia Maddix via Diabetes-Talk
>> Sent: Monday, November 09, 2020 2:25 PM
>> To: Diabetes Talk for the Blind
>> Cc: Patricia Maddix
>> Subject: Re: [Diabetes-Talk] V-go insulin system
>> 
>> Bridget,
>> The NFB did just recently start up a work group to address this issue. The person at NFB who is heading it up is an attorney by the name of Stacie Dub now. there are five of us from the Dan group on the committee and we had our first zoom conference meeting about a week and a half ago. We discussed a letter that had been drafted to send to influential people at each of the pump companies explaining our issues and needs.  We will keep you allWe will keep you all posted but I imagine things will move slowly.  
>> Patricia
>> 
>> Sent from my iPhone
>> 
>>>>> On Nov 9, 2020, at 9:49 AM, Bridgit Kuenning-Pollpeter via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
>>> Jamie,
>>> Thanks for the intel. This is very helpful. Like you, I have rather 
>>> low insulin needs. So, this system would not work for me either. When 
>>> I moved to Iowa, I made the decision to go off the InPen. I have no 
>>> support here to assist with pump needs when I need it. It made sense 
>>> for me to transition off. However, I want to be back on a pump. I'm 
>>> using Levemir for my long acting, and Humalog in the InPen. First, 
>>> InPen is a novelty. I've not found it to be any different than a 
>>> traditional insulin pen. I do like that I can confirm delivered doses 
>>> via its app, but other than that, it does nothing else useful in my 
>>> opinion. It does not even provide info about how much insulin is left 
>>> in the pen, which would be helpful. I confirmed with InPen that it 
>>> does not provide this info. It's supposed to pair with Dexcom, but it 
>>> does not provide real time info. I have to manually plug doeses, 
>>> carbs, etc. for it to calculate. And I hate logging on 2 separate 
>>> apps, so I stopped logging on InPen, and just stick to logging info 
>>> on Dexcom. My BGs have not been too bad since transitioning, but I 
>>> definitely have better, tighter control with a pump. I really hope 
>>> accessibility is being considered with these apps; I would switch 
>>> back to a pump in a heart beat if I had more independent control with 
>>> a pump. I know DAN and the NFB were supposed to revive efforts on this again, but have not heard anything substantive beyond it putting yet another committee together.
>>> Bridgit
>>> -----Original Message-----
>>> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of 
>>> Jamie Gurganus via Diabetes-Talk
>>> Sent: Monday, November 9, 2020 11:22 AM
>>> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
>>> Cc: jamielgurganus at gmail.com
>>> Subject: [Diabetes-Talk] V-go insulin system Hi all!  I just came 
>>> from seeing my Diabetic Educator.  I asked her about the V-go system, 
>>> and she showed it to me.  Here is the scoop on why it might not work 
>>> for many of us pump users.
>>> 1.    The basal rate can only be set at 20, 30 or 40 units per day.  So,
>>> for someone like me who only uses 13 units each day, it would be an 
>>> insulin overload all day for me.
>>> 2.    The basal rate is steady all day.    So, at 20 units total per day,
>>> the basal rate per hour is .8.  The only time my rate is that high is 
>>> for a few hours in the middle of the night.
>>> 3.    The bolus dose is set at 2 unit increments, so taking a half unit or
>>> just one unit is not possible.
>>> Anyway, it is pretty neat for someone who might need a lot more 
>>> insulin than I do.
>>> My Medtronic 530G is out of warranty in 2022, but that doesn't mean 
>>> it will quit on me by then.  So, my educator hopes that either Tandem 
>>> or Omnipod come out with something accessible for us blind users by 
>>> then.  She said that they are both working on accessible phone apps 
>>> that will have the ability to run the pump from the phone.  She also 
>>> mentioned that there is a person from Boston named DeMayo who is 
>>> working on a pump.  She does not think it will ever get on the market 
>>> though.  It is a dual cartridge system that has both insulin and 
>>> glucagon in it.  I sure don't want to have to pay for glucagon.  I 
>>> refuse to fill a glucagon prescription, since it is anywhere from 
>>> $300-600 to fill.  In my 50 years of being a diabetic, I have never had to use my glucagon kit.
>>> Hope everyone is staying safe and well!  
>>> Jamie
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