[Diabetes-Talk] {Spam?} RE: What Now?

Tue Aug 25 16:39:14 UTC 2020

Yes, President Riccobono has heard from all of us, I think--or many anyway. I first contacted him in the year after the first accessibility resolution that didn't include appliances and such, was passed in 2013. Our Iowa Diabetes Action Network crafted that resolution, and I felt we needed to get moving on it. Mike Freeman, who was then chair of the national group, was a bit weary of trying to gain accessibility--he and I just had different views. Anyway, Mike Freeman, Tom and Eileen Ley, and I were given Parnell Diggs to work with, and for about nine months we kicked around ideas, talked with the FDA, Medicare, and a couple of other government departments, located (but were unsuccessful establishing dialog with) pump manufacturers, and talked of NFB hosting a summit on diabetes and accessibility (though at the end it was to be included with their law symposium. Then Tom Ley contracted cancer and died, and Mike Freeman died, and Parnell Diggs's last words to me were "If you ever have an idea, just let me know." He had told us that no committee had ever met as long as we had based on a resolution. One thing did come out of that committee, a Bill of Rights for people who are blind or low-vision and have diabetes. It was presented to the convention as a resolution and, like the 2013 resolution, passed unanimously. But for some reason, NFB shuns things like that and approaching key partners who might contribute something (like advice about working with manufacturers and others), so I doubt that many blind people even remember that we have this Bill of Rights. Perhaps if we can get something going here and make things happen, we could make sharing that part of our training for getting others involved in working with us.

The second time President Riccobono was contacted, I wrote to this list and asked that others join me in writing him to get something really done. As Veronica said, he named two people from the national staff to work with us, and with their help, we were able to get the Dexcom G5 approved by Medicare--which, by the way, was helpful to all CGM users, not just blind people. But very shortly after that happened, both of our national people left the National Center to do other things. Anil Lewis received the task, but after some discussion with Veronica and me (he asked for background, we provided it, and he said we were rude), nothing happened, at least with participation of blind diabetics, until the same-old same-old was dragged out for Washington Seminar in 2019 at the last minute and with little training of participants.

Like Veronica, though our needs for accessibility in this realm at this minute are very different, I am committed to accessibility of pumps, CGM's, and whatever other devices people want to throw out there. And, like the second committee NFB formed, I'd be glad to have the rest of medical devices come along for the ride. Who knows what pieces of technology any of us may need in the future, and the time for accessibility is now! A year ago I'd have told you I'd washed my hands of the issue, but I have lately come to realize that success does not lie only with the NFB. So if we can make things happen, I'm there! 

Sorry for writing this for all who've already read it, but wanted to bring new people on the list up to date. And nothing I have said here is intended to in any way disrespect the work of NFB. But this issue seems not to be understood for what it is, and I believe people on this list do understand it.

Sandi

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Melanie Torrance via Diabetes-Talk
Sent: Monday, August 24, 2020 3:35 PM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: Melanie Torrance <melanietorrance at icloud.com>
Subject: Re: [Diabetes-Talk] What Now?

Have you ever sent your concerns and the history of all your efforts directly to the President of NFB? It sounds like you all have gone thru all the proper channels, so why not go straight to the top?
Melanie

Sent from Melanie's i phone

> On Aug 24, 2020, at 4:23 PM, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> Sorry Michael. But as Sandy and Bridgit have already said, I have totally given up on Anil Lewis. He killed the medical device task force which was really making progress. I offered him so many hours of help and he clearly didn't want it. It's unfortunate that we got so close and were then essentially abandoned by the NFB top brass. If I thought there'd be anyone there right now, I could just about be convinced to break into Google. <grin> But I'm grabbing emails so that if an idea lands in my head, we can go somewhere with it. I really did need a break after being so devastated by my NFB experience. But the truth is, I can't let stuff like that stop me. I'm back up and ready to pound on things again.
> And oh Bridgit I am with you! I still haven't forgiven Medtronic for suing Smiths Medical out of business. Nobody else made a pump where you could go into the computer, change any basal rates, time, ratios and then just fire the changes back to the pump. Now that was access. I still have my Window-Eyes set file I made for it. Okay, we couldn't get at the food library, but everything else, you bet! 
> Let's see what we can do.
> 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 Sandi Ryan via Diabetes-Talk
> Sent: Monday, August 24, 2020 1:06 PM
> To: 'Diabetes Talk for the Blind'
> Cc: sjryan2 at gmail.com
> Subject: Re: [Diabetes-Talk] What Now?
> 
> It seems to me, though, that there are quite easy ways to get speech, beeps and anything else we need into today’s technology, and to do it without lots of extra cost of production for just blind people. Apple has been producing their phones, tablets, etc. with accessibility built into every piece they sell since at least 2010. They figured out what axccessibility would take—and not just for blind people, but for deaf people, those with hands that don’t function normally, etc., and they put those accessibility features into every unit. People who don’t need the features just ignore them, people who need them pick and choose what they use, and everybody pays the same price and you just pick the unit you want off the shelf and use it, however it works for you. They added the cost of production across all their units, so that “how many will we need, and how will we get rid of them if they’re not liked by this population” are not valid questions. There may be glitches I’m not factoring in, but I’m thinking there are brilliant engineers working with all this who could take those glitches and make them no problem, and an insulin pump would be an insulin pump, not this one for the blind and this one for the sighted. 
> 
> 
> 
> Having addressed this with Anil Lewis and others at NFB, what they’ve come up with is the idea for a bill that would cover large home appliances, gym equipment and ... what was that other thing? ... Oh yeah! Medical devices! 
> 
> 
> 
> It seems to me we need to a) work with marketing experts to create a message or group of messages that clearly and succinctly express our needs for accessible devices; b) find out how to reach and talk with someone—anyone—who works on manufacturing equipment for diabetics and could think outside the box long enough to talk with us to discuss their needs and fears; c) Form a task force and work with technology engineers to come up with ideas for how accessible medical devices can be made using hardware, and possibly software already available on the market; d) work with financial experts to figure out how devices can be priced for everyone, instead of redesigning them for each population based on accessibility needs or lack thereof; and e) help our partners (endocrinologists, diabetes educators, nurses, dietitians, pharmacists, researchers, nonprofit organizations, and others) understand our problems with caring for ourselves without the devices available to those who don’t need accessibility and why it’s important that they care about our issues.
> 
> 
> 
> Technology is much smaller and less expensive than when the Prodigy meter was created a long time ago. We used to hear the old line about there are so few blind people, how would things made for us ever make a profit? But I don’t think that’s valid any more. The Apple protocol demonstrates that. If a blind person, or a person with another disability, never bought an iPhone, Apple would still sell them. And I can’t imagine, if an insulin pump was made accessible, why anyone with diabetes not jumping at the chance to have one. It makes such a difference in the numbers of injections and the time you’d spend taking care of yourself! I don’t need one now, but when and if the day comes that I do, I certainly want it to be available!
> 
> 
> 
> So ... where do we start?
> 
> 
> 
> Sandi
> 
> 
> 
> 
> 
> 
> 
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Matt Davis via Diabetes-Talk
> Sent: Monday, August 24, 2020 11:56 AM
> To: Diabetes-Talk at nfbnet.org; alewis at nfb.org
> Cc: Matt Davis <mdavisforalternatives at gmail.com>
> Subject: [Diabetes-Talk] What Now?
> 
> 
> 
> Let me know your thoughts…I, Mary, currently wear a 530  G, Medtronic pump and too, am blind. In my past job position I had been invited to many Diabetic Fairs and demonstrated blindness related tools, alternatives and techniques. 
> 
> Because I wore an Acu Chek Spirit pump, I would demonstrate how it worked for me. Demonstrating how the tones and beeps allowed a blind person to navigate most of its functions.
> 
> interested participants  and many “representatives” of many companies would also learn about how pumps work, making it possible for blind people to use their equipment. 
> 
> Reps of diabetic equipment and companies would ask, “How many blind people would actually use a pump?”
> 
> I would repeatedly explain that the number would be skewed because the available pumps do not have the tones or beeps for navigating.
> 
> I would further explain to these reps, that if pumps were made with these simple tones or beeps, more blind people could decide if they were interested or not.
> 
> Since I am new to this list serve, is it possible to take a count at this time to know how many of us use a 530 Medtronic pump, second, how many would use a pump if tones and beeps were made available,
> 
> And Third, years ago, when Disatronic first manufactured a workable pump model then joined with Acu Chek who kept that upgraded models which were designed for a person to use the pump in their pocket, thus allowing blind users access. 
> 
> So, when Medtronic bought (or what ever terms Medtronic wants to use) Acu Chek’s pumps, Medtronic not only did away with a usable pump for the blind, they continue to upgrade, to a point that it is now, absolutely impossible for a blind consumer to use. 
> 
> What if their goal in continuing to upgrade as they Are, is specifically targeted against blind persons who receive Medicare and/or Medicaid.
> 
> And if so, now what?
> 
> It is a serious question for some! 
> 
> No one wants to sue, but what to do?
> 
> Thank you and sincerely, 
> 
> Mary
> 
> 
> 
> Sent from Mail <https://go.microsoft.com/fwlink/?LinkId=550986>  for Windows 10
> 
> 
> 
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