[Diabetes-Talk] Interesting news regarding my Dexcom system
Joy Stigile
joystigile at gmail.com
Thu Aug 17 00:00:21 UTC 2017
Hi,
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Joy
-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of mr. Chikodinaka Nickarandidum Oguledo via Diabetes-Talk
Sent: Wednesday, August 16, 2017 4:29 PM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: mr. Chikodinaka Nickarandidum Oguledo <ochikodinaka at gmail.com>
Subject: Re: [Diabetes-Talk] Interesting news regarding my Dexcom system
my friend b ff does not have it diabeedas unsubscribe me from this list
On 8/16/17, Bridgit Kuenning-Pollpeter via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> Has Medicare said why they won't allow use of the app?
>
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On
> Behalf Of Veronica Elsea via Diabetes-Talk
> Sent: Wednesday, August 16, 2017 5:09 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
>
> 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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>
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