[Diabetes-Talk] The Stupidity of Medtronic.

Wed Jun 19 17:27:10 UTC 2019

Dar,

This is specific to the Omnipod insulin pump; not all diabetic products.

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 11:16 AM
To: diabetes-talk at nfbnet.org
Cc: d m gina <dmgina at mysero.net>
Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

So all diabetics have to change from apple products to androyd?
Or get a second phone?
Hmmm wonder what apple did they eat?

Original message:
> Okay, here's an example. Many medical device companies are turning to 
> Android as a basis for their new products. This includes, pumps, CPap 
> machines, and other devices. I have been trying to figure out how to 
> get Google to start with their health division, Verily, to come up 
> with funding, then somehow to make the TalkBack system a part of the 
> operating system installed in all of these devices. Trouble is, I 
> haven't landed the right contacts yet. I'm sending emails, trying to 
> ask people who they know and so on, but I haven't hit the right person 
> yet. This is the sort of thing a national organization could really do 
> better than an individual. I have been saying this for a year and a 
> half now. The NFB says, oh we know people at Google. But they're not 
> in the right department and I haven't seen any action. If the NFB is 
> so concerned about the Dexcom, why didn't they push harder to remove 
> the question about whether or not we're going to use the receiver with 
> the G6? Yes, they don't seem to be enforcing this, but the average 
> person doesn't know this. There's a job half completed. My experience 
> with the NFB over many years is that they start something and when 
> they get some sense of maybe a little bit happened, they stop. One of 
> these days I'm just going to stage a sit-in at the Google campus until 
> I get directed somewhere. Time is not our friend here. So we have to 
> get past complaining on a list, whether it's this one or the used to 
> be task force one. If I knew where to plant my noise, I'd have done it 
> long ago. I actually all but closed my business so that I could devote 
> my efforts to the medical device task force, because I had so much 
> hope. I care very much about other blind people and myself. That's why 
> I've made such an effort to make the Omnipod work for now. I will 
> happily spend any amount of time helping others as I did in the early 
> Dexcom days because it matters to me. All of you matter to me. I matter to me.
> And I have said all of this on the task force list, many times. Sorry 
> if I've flagged a bit. I'm broken-hearted and I've had other family 
> emergencies that demanded my attention. And I could really use someone 
> who has good connections somewhere. Till that time comes, I'll keep 
> looking. I will also keep on with my daily struggle to keep using 
> technology that really isn't designed with me in mind. Thanks for listening.
> 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 Walter Mitchell via Diabetes-Talk
> Sent: Tuesday, June 18, 2019 6:25 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-pro
>> 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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