[Diabetes-Talk] The Stupidity of Medtronic.

Wed Jun 19 20:16:43 UTC 2019

Dar,

I addressed pumps in my last post. No, it's difficult to see a pump screen through the screen of a phone. AIRA, Be My Eyes and FaceTime don't work, because it's difficult for the person on the other end to see the pump screen.

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 2:35 PM
To: diabetes-talk at nfbnet.org
Cc: d m gina <dmgina at mysero.net>
Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

Ok would ira be able to help with pumps?
Or would it take to long to get done what you need done at the time of a beep?

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