[Diabetes-Talk] Interesting news regarding my Dexcom system

Cindy Ray cindyray at gmail.com
Wed Aug 16 22:33:29 UTC 2017 

I think we are all in a position to reach out to the higher ups. It is our National Federation of the Blind.
Cindy lou ray 

Sent from my iPhone

> On Aug 16, 2017, at 5:08 PM, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> As I said to Joy privately, here's the key difference with the Dexcom Medicare issue that needs urgent attention. This is not about making something accessible. The something, in this case the Dexcom, is accessible. We just must use the iPhone app. Medicare is forbidding blind people from using the accessible version of that Dexcom. This is denial front and center, plain and simple. Frankly, I would have hoped that both large organizations would have had people watching that type of legislation and rule making. This item should not depend on any new resolution or legislation; it should have been allowed as the Dexcom was approved. Maybe when the process started, the app hadn't received its final approval for dosing from the FDA, but it has now.
> So thinking out loud here, it would seem that we need to find that official statement from the FDA, find out where the actual regulation is created and find a way to chart the path towards fixing this. This is out and out discrimination. No other words needed here. I am personally not on Medicare yet but I've got a little over a year, says she from a very selfish perspective. <grin> 
> Perhaps since I'm not trying to sort out my own case, tomorrow I can find out from Dexcom how this process works and see what we may be able to do together. We can't let this one rest. Are any of you in a good position to notify the higher-ups at the NFB? I'm all ears for other ideas but count me in on any working group on this one. Thanks.
> 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 Joy Stigile via Diabetes-Talk
> Sent: Wednesday, August 16, 2017 10:39 AM
> To: 'Diabetes Talk for the Blind'
> Cc: Joy Stigile
> Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
> 
> I for one wish you were still on the DAN Board!
> Joy
> 
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of sandi via Diabetes-Talk
> Sent: Wednesday, August 16, 2017 8:56 AM
> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
> Cc: sandi <sjryan2 at gmail.com>
> Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
> 
> Veronica, You’re absolutely right on this one. We had a group that was working very hard, through and with the NFB for about a year, determining our best strategies for making something happen in accessibility of diabetes technologies. After convention last year (2016) where the convention passed the Bill of Rights for blind and low-vision people with diabetes (not exactly the proper name), several things happened, and the National Office just dropped the issue. They had taken it up in the first place, after our 2014 resolution because of an e-mail I wrote to President Riccobono, who then assigned Parnell Diggs to work with a small committee. Last summer was a busy one, with Tom Ley becoming ill, Mike Freeman dying, and the World Blind Union conference immediately following NFB. Also Kristian, who had been working diligently with us and for us from the National Office, left to further her education. But when I contacted Parnell (this was well before his leaving, and before Mike’s death), I was simply told that “If you hear anything significant, let me know.” 
> 
> So, Joy, activities did go on that weren’t legislation. We had just asked at our last committee meeting that this issue be made a Washington Seminar issue in 2017, but of course we didn’t meet again, so nothing happened.
> 
> Let me suggest that, if there are those on this list who want something to happen regarding accessibility of diabetes and other medical technologies, that we have a campaign to get this issue front and center on the President’s plate and among National Office staff.  As President Riccobono and I discussed nearly two years ago now, a resolution passed unanimously by the convention is a mandate, whether the leaders of the organization want to do it or not, and this is one mandate that has been pretty much ignored since the people Parnell Diggs trusted (I was on the committee, but not one of the trusted members of it) are not available. Incidentally, the committee was a committed group. I’d love to see more happen on this front. 
> 
> I’m sure others who care about this have noticed that there are more workarounds for pumps and CGM’s and such, but until accessibility is not a “nice” thing but a mandate, I don’t see accessibility being consistent or guaranteed in a given product—even one that’s been accessible. 
> 
> One of the things our committee was working on, that resulted in the Bill of Rights, was convincing people involved with diabetes that we are not a tiny audience for which no one wants to do anything, but a growing audience, and only one tip of the accessibility needs audience they need to address. 
> 
> Anyway, I wanted to strike down the myth that all that’s been done is work in the halls of Congress for trying to help this along. And incidentally, what I want is legislation that addresses medical devices singly, not appliances or orphan drugs or anything else. This is an important and urgent issue, and as such, it deserves its own legislation.
> 
> Now that you’re all glad I’m no longer on the DAN board, I’ll shut up!
> 
> Sandi
> 
> Sent from Mail for Windows 10
> 
> From: Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Wednesday, August 16, 2017 12:07 AM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
> 
> Another example of ableism. When does it stop?
> 
> Bridgit
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Joy Stigile via Diabetes-Talk
> Sent: Tuesday, August 15, 2017 6:51 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Joy Stigile <joystigile at gmail.com>
> Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
> 
> Hi Veronica,
> The National Federation of the Blind brought legislation to Capitol Hill for
> 4 years and was never able to get enough Republican Legislators to Co-sign a bill to make Home Health Equipment accessible to the blind.  It never had a chance to be even heard on the floor.  Our Republicans do not want to put any restrictions on big business.
> 
> Joy
> 
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Veronica Elsea via Diabetes-Talk
> Sent: Tuesday, August 15, 2017 2:42 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
> 
> I was also told that you have to dismiss alarms on both the phone and the receiver. I was also told that dismissing alarms on the receiver is not a simple matter, even for those who can see. So sorry but where is the NFB on this one? Who was watching this one happen? If any organizations of the blind care about our lives, not to mention discriminatory practices, they should be all over legislators right now. This is awful! I don't know if an appropriate starting place would be to send correspondence to the senate health committee or if someone else would be better. But boy, if anythingneeds action, this does. 
> 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 Jamie Gurganus via Diabetes-Talk
> Sent: Monday, August 14, 2017 5:57 PM
> To: Diabetes Talk for the Blind
> Cc: Jamie Gurganus
> Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
> 
> Daniel,
> 
> From my understanding, I believe you can use both the phone and the receiver at the same time. However, the phone is accessible, and that receiver is not. You will need to input The calibrations to both units, and always have both with you.  I am not sure what would happen when you get a high or low blood sugar alert that needs to be acknowledged on either the phone or receiver. I don't know if dismissing the alert on the phone would also dismiss it on the receiver and vice versa. I guess you will have to play around with that. 
> 
> I am still wondering though how they will ever find out which device you are using as the receiver. When you download your blood sugars to share with your doctor, I did it by plugging my receiver into my computer. Now, I don't even have to do that. I just tell my diabetic educator that I would like her to review my blood sugars, and she can access them right from the cloud. I don't even have to use my phone.
> 
> The only reason I know that you can possibly use both devices as the receiver is from the discussion I had with my diabetic educator. I wasn't sure if I liked the idea of sleeping with my phone, and she suggested that I use both and use the receiver at night. Because the receiver isn't accessible to me, I never ended up trying that. I slept with my phone in my shorts pocket until I purchased and Apple Watch. I have my watch alarms and alerts silenced and on the highest vibration, so it vibrates my wrist to let me know I have an alert. I keep my phone in my nightstand drawer on silence and very low volume. When my watch buzzes me, I can pull out my phone and except the alert. That way, I don't bother my husband as much as when I had the phone on my nightstand. The sound of a vibrating iPhone in the middle of the night is almost like an alarm clock!
> 
> Good luck and let us know how it goes.
> 
>    Jamie 
> 
> Sent from my iPhone
> 
>> On Aug 14, 2017, at 7:02 PM, Daniel C via Diabetes-Talk
> <diabetes-talk at nfbnet.org> wrote:
>> 
>> Good day list,
>> I am writing to let the members know that, I finally did get my Dexcom
>> G5
> Mobile system today.
>> Besides  The carrier having issues delivering it the first time, for 
>> an on
> known reason that decks calm and I cannot figure out, it finally arrived.
>> I am also writing to ask a question, in regards to the system 
>> transmitting
> results.
>> My Dexcom sales representative called, and informs me that I am not
> permitted to use the app for results, but instead must use the receiver.
> This is because if Medicare found out that I am using the app and not the receiver, they will most likely deny me for future products, according to the Dexcom representative. Does anyone know if this statement is true?
>> If said statement is true, how can I have it so that I can still use 
>> the
> iPhone app, and transmit results to my receiver? Or is this not possible?
>> I was also told by my Dexcom representative that if people using 
>> Medicare
> can call the one 800 number for Medicare, and file complaints against the nonuse of the decks calm G5 iPhone app, then Medicare most likely may turn over their non-approval.
>> As it stands now, from what I was told, decks calm must tell their 
>> users
> that they are not permitted to use the app to share results, or anything like that. Instead, decks calm is encouraging people for now, to use the receiver for transmission of results. Until Medicare overturns the non-approval of the dexcom G5 iPhone app.
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