[Diabetes-Talk] The Stupidity of Medtronic.

Wed Jun 19 22:09:07 UTC 2019

Bridgit, we have had a little bit of dialog on the medical device task force. I've had a few phases of correspondence with Anil but they usually deteriate into him claiming that we're essentially not doing the work ourselves. I wish I could really communicate how hard we worked and how hard I tried one on one for several months after things ground to a halt after last year's convention. And as I said yesterday, we really need more than just telling our legislators we want it. We want it. We need to have the companies on board and get them to say, we want to create it! The legislators don't know the detail and frankly, the NFB proposed bill is too broad and when so much is covered, you loose the specificity that is necessary for medical devices. I really don't believe this is the right approach for getting our needs met and getting them met quickly. If we start having the access board evaluate current technology and take the next ten years for rule-making, you know, sighted people with diabetes will be three steps further along with a completely different technology by then. Or, heh heh heh heh heh, maybe that elusive cure? We need medical device companies on board now so that our needs will be considered and met as they develop the next new devices. In the medical device task force, we were actually talking about setting up a demo at the NFB center, inviting representatives from the different companies. If that had happened, we could have been positioned to set up collaborate plans that could have gone somewhere. We were considering starting by looking at places where government funding is already in play, such as the veterans administration. And here, the loss of Brad Hodges really stings. He was a very hard worker. 
We also talked about the need for inclusion of blind people in the focus groups for all of these new devices. That would happen by working with the companies. If a national organization can establish ongoing relationship with these companies, then we wouldn't be so stuck by the loss of any individual member. This was part of the value in working as the task force had done. But we had an incredible commitment from Eric and Dylan and they did an excellent job of organizing us, doing the follow-up work and showing willingness to learn about the various devices we all use. Sadly we have lost that now. That is what I've tried to see if I could bring back but alas, I have not succeeded. This is one place where national organizations working together can really make a difference in the quality of life for many blind people. Right now both NFB and ACB are claiming that they sorted out Dexcom. Yet neither one has finished the job. I can repeat myself to Dexcom till I'm blue in the face, but I'm just one individual that they can easily dismiss, no matter how often I pester. We could use legislation as a way to sort out the ridiculous Medicare receiver requirement that still lurks out there. We need something codified in order to prevent blind people from being told they can't use the Dexcom because most doctors and educators won't know that this rule isn't really being enforced. If we're that specific, there's always some bit of Medicare legislation floating around that could stand an attachment. But Congress
Doesn't really have the authority to order private companies to do something unless it's tied to a federal contract somewhere. The old, if it's not accessible we won't buy it. But that's not the current proposed bill we're being asked to promote. 
I also offer my thanks to Sandy, Mike and the others who have been through this for so many years. Any organization should be assembling their bright members and helping to turn all of these individual corners of expertice into a cohesive grand effort. Isn't that why we have them? 
Just my thoughts before getting back to work. 
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: Wednesday, June 19, 2019 1:17 PM
To: 'Diabetes Talk for the Blind'
Cc: Bridgit Kuenning-Pollpeter
Subject: Re: [Diabetes-Talk] The Stupidity of Medtronic.

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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