[Diabetes-Talk] Interesting news regarding my Dexcom system

Wed Aug 16 23:28:39 UTC 2017

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.
>> _______________________________________________
>> Diabetes-Talk mailing list
>> Diabetes-Talk at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
>> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
>>
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/jamielgurganus%40
> gmail.com
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/veronica%40laurel
> creekmusic.com
>
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/joystigile%40gmai
> l.com
>
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bkpollpeter%40gma
> il.com
>
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/sjryan2%40gmail.com
>
>
>
> ---
> This email has been checked for viruses by AVG.
> http://www.avg.com
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/joystigile%40gmail.com
>
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/veronica%40laurelcreekmusic.com
>
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bkpollpeter%40gmail.com
>
>
> _______________________________________________
> Diabetes-Talk mailing list
> Diabetes-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Diabetes-Talk:
> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/ochikodinaka%40gmail.com
>


-- 
for if you persavear. you will conker never fear. try try try again