[Diabetes-Talk] The Stupidity of Medtronic.

Wed Jun 19 17:46:03 UTC 2019

I totally agree.

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Bridgit Kuenning-Pollpeter via Diabetes-Talk
Sent: Wednesday, June 19, 2019 12:33 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: Bridgit Kuenning-Pollpeter <bkpollpeter at gmail.com>
Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

Dar,

If you have an inaccessible meter and cannot use it visually or do not have help reading it, and you wanted to use a service like AIRA or Be My Eyes, you would have to use it every time you test your BGS, which for many of us, could be 4 times a day, could be 8 times a day.

For those of us with insulin pumps, it's very difficult for a person on a video call to see the screen. I've tried Be My Eyes and AIRA with my pump, and it was incredibly difficult for the agent to see the screen on my pump.

At the end of the day, using AIRA is not practical, and my problem with AIRA is that while it has its uses, it's not creating independent solutions for blind people. You are still relying on sighted assistance with a service like AIRA. We shouldn't have to use AIRA, Be My Eyes or anything else; accessibility should be a given in medical devices. I should be able to operate all functions on my pump without assistance. Likewise, it should be a given that a blind diabetic gets approval for a talking meter.

Bridgit

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of d m gina via Diabetes-Talk
Sent: Wednesday, June 19, 2019 11:19 AM
To: diabetes-talk at nfbnet.org
Cc: d m gina <dmgina at mysero.net>
Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

I have a question,
Not all of us have ira as I do, where could that company help you run the devices you are speaking about?
Not having any, would this mean you would have to call them often?
Remember these are just questions.

Original message:
> It's not just Medtronic. Even the Abbott Company and insurance 
> companies require blind people to get the completely inaccessible 
> meter, and if on the pre-approval for you say you don't need a meter 
> they don't even look at your approval information. And all of you have 
> made good points. Not approving something because results are better 
> is just stupid, so let's all brainstorm about how we can get people to 
> listen to us. I don't think we can do this before convention but 
> perhaps we need to start having Diabetic calls specifically addressing 
> these issues and we can develop some strategies to get companies to 
> start listening again.

> Jeanette

> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
> Behalf Of Walter Mitchell via Diabetes-Talk
> Sent: Tuesday, June 18, 2019 9:25 PM
> To: 'Diabetes Talk for the Blind'
> Cc: Walter Mitchell
> Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

> Yes, I am on the National DAN Board and I was on the committee. There 
> was others as well Bernadette was on the board. The DAN was the 
> originator of the idea.

> Walter Mitchell
> V-President, Ohio Diabetes Action Network Board member, National 
> Diabetes Action Network
> (513) 582-8606
> Walterl.mitch2 at gmail.com

> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
> Behalf Of Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Tuesday, June 18, 2019 9:14 PM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

> Is anyone from the DAN board on the committee? Is national working 
> with DAN on this? If not, it should.

> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of 
> Michael Barber via Diabetes-Talk
> Sent: Tuesday, June 18, 2019 6:06 PM
> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
> Cc: Michael Barber <m.barber817 at gmail.com>
> Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

> Anil Lewis is the person heading up this committee at this time.

> Cordially,
> Michael D. Barber

>> On Jun 18, 2019, at 5:59 PM, Eileen Scrivani via Diabetes-Talk 
>> <diabetes-talk at nfbnet.org> wrote:

>> Walter,

>> Do you know who took the places of Eric & Dylan? My thinking is that 
>> a diabetic with understanding of pump use & glucose monitors and who 
>> is blind from this group should be on that committee. I’m disgusted 
>> with the lack of motivation, interest, what ever the driving force is 
>> to try and get something done for diabetics who are blind and need to 
>> use these devices be they pumps, glucose monitors. I believe they 
>> should not be thrown into a large group of generic appliances.

>> I have my pump that's working and under warrantee so I feel safe, for 
>> a while, but I am very worried about the future and am frightened for 
>> those blind diabetics whose pumps breakdown and won’t be able to get 
>> replacement pumps. Luckily for the person I spoke with yesterday, 
>> after speaking with me they called Medtronics who said they would 
>> work with them to get a pump they could use. At some point the supply 
>> of Medtronic pumps that a blind person can operate will dry up and go 
>> away. When I’ve spoken with Medtronic reps & my pump trainer they 
>> swear to me they are working on getting another pump that will be 
>> operational, but when, when. It is frightening to think about it.

>> Eileen

>> From: Walter Mitchell via Diabetes-Talk
>> Sent: Tuesday, June 18, 2019 5:29 PM
>> To: 'Diabetes Talk for the Blind'
>> Cc: Walter Mitchell
>> Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

>> I understand your comments, but my questions are based around, just 
>> how we lost both our experts in close proximity. We made a 
>> considerable amount of noise with them and without them, we haven't 
>> made a sound. In my book, I don't think that was a coincidence. That is just my opinion.

>> Walter

>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of Veronica Elsea via Diabetes-Talk
>> Sent: Tuesday, June 18, 2019 5:13 PM
>> To: 'Diabetes Talk for the Blind'
>> Cc: Veronica Elsea
>> Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

>> Actually, this is slightly nicer than what used to be on their web site.
>> As for the NFB, in 2018, the accessible medical equipment task force 
>> started off working very hard and really was setting up goals, plans 
>> and assigning tasks to people. Unfortunately the NFB transferred 
>> everything to the Jernigan Institute. They dropped all of the medical 
>> equipment into one giant bill, which aims to address everything from 
>> dish washers to DVD's. They want the Access board to set up rule 
>> making and so on and so forth. If I follow this language, it will be 
>> at least
>> 10 years before anything happens. And nobody using current diabetes 
>> management equipment is currently asked to help. So from where I sit, 
>> looks like they dropped us. But while it lasted, it was a good task 
>> force and I worked my butt off. Okay, it's still there. Darn! <grin> 
>> But I do live in fear of what will happen when Insulet decides to 
>> discontinue the model of PDM I'm using. And to think we could be a 
>> year further along in our efforts if things had continued as they 
>> started last year. Very disappointing.
>> 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 Bridgit Kuenning-Pollpeter via Diabetes-Talk
>> Sent: Tuesday, June 18, 2019 2:01 PM
>> To: 'Diabetes Talk for the Blind'
>> Cc: Bridgit Kuenning-Pollpeter
>> Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

>> It's wrong but pretty standard pump language. Most companies have a 
>> similar warning. I know pens used to have similar verbiage and there 
>> was a legal action to remove this language from pen info and packaging.
>> Wondering if something similar needs to happen with pump companies. 
>> Although, now that Medtronic is no longer making the 530G, there are 
>> not currently any pumps with work-arounds on the market.

>> BTW, we tried to get a group together to work on this accessibility 
>> issue, and the only thing to come out out of it was a bitchfest about 
>> using Facebook in addition to the listserve. So...

>> Bridgit

>> -----Original Message-----
>> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of 
>> Eileen Scrivani via Diabetes-Talk
>> Sent: Tuesday, June 18, 2019 3:33 PM
>> To: NFB Diabetes Talk <diabetes-talk at nfbnet.org>
>> Cc: Eileen Scrivani <etscrivani at verizon.net>
>> Subject: [Diabetes-Talk] The Stupidity of Medtronic.

>> Hi All,

>> I got an email from Medtronic today and its subject was “Pre-travel 
>> Tips To Get You Ready For Summer.” It sounded interesting to me so I 
>> decided to click on a link in the message that brought me to their 
>> web site. I was reading along and then came their disclaimer which 
>> while I know its how they think, I couldn’t believe they had the 
>> below written out. The article was talking about the latest & 
>> greatest pumps they make which as blind diabetics we can’t use. Maybe 
>> though they should make a statement that their current pumps do not 
>> take into account accessibility rather than saying someone without 
>> vision or impaired vision should not be using insulin pump therapy. I 
>> find it especially upsetting since I just was put in touch with a 
>> person yesterday who’s current pump is going out of its warentee soon 
>> and this person is in the rough position of finding a pump to use independantly.

>> By the way, folks, where is the DAN on working on this topic for 
>> getting accessibility into pumps? Any plans for the up-coming convention?

>> At the end of what I was reading came the following which is very 
>> annoying to me. Here’s what it states:

>> “Pump therapy is not recommended for people whose vision or hearing 
>> does not allow recognition of pump signals and alarms. Pump therapy 
>> is not recommended for people who are unwilling or unable to maintain 
>> contact with their healthcare professional. The safety of the 
>> MiniMed™ 670G system has not been studied in pregnant women. For 
>> complete details of the system, including product and important 
>> safety information such as indications, contraindications, warnings 
>> and precautions associated with system and its components, please 
>> consult 
>> http://www.medtronicdiabetes.com/important-safety-information#minimed
>> -
>> 670g
>>  and the appropriate user guide at
>> http://www.medtronicdiabetes.com/download-library”

>> If you are interested in reading this for yourselves, , here is the 
>> link to what I was reading:

>> https://www.medtronicdiabetes.com/loop-blog/taking-care-insulin-pump-
>> t
>> akes-care/?utm_medium=email&utm_source=eloqua&utm_campaign=may_non-pr
>> o
>> mo&utm_content=pumpcaretips_first_loopblog2

>> Eileen

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--
--Dar
skype: dmgina23
  FB: dmgina
www.twitter.com/dmgina
every saint has a past
every sinner has a future
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