[Diabetes-Talk] What Now?

Mon Aug 24 17:26:34 UTC 2020

Yes, yes, yes, all this.

I love my pump. Well, not so much the actual pump-- miss my Cosmo-- but I love what a pump can do. But I'm moving out-of-state, and will no longer have the same support for the visual things I need help with for my pump. I don't require daily or even weekly assistance, but nonetheless... Since the 530G will no longer be under warranty in a couple more years, I figured it makes sense for me to switch to the InPen for now. However, if an accessible pump comes on the market and is a viable option, I will switch back in a heart beat.

I'm totally on board working with Veronica and anyone else on creating a task force and doing something about this though. At some point, we need to take this discussion out of the theoretical and into taking action of some sort, however that looks.

Bridgit

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Veronica Elsea via Diabetes-Talk
Sent: Monday, August 24, 2020 12:20 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
Subject: Re: [Diabetes-Talk] What Now?

Hi Mary. It’s a complex question you ask. The trick is that pumps now do so much more than they did back when I started in 1991. There’s no way we can function with just beeps when you start to consider pairing up with a CGM, food libraries, multiple basal patterns and all the questions they ask about what we’re doing and/or eating. Yes, to a certain extent I do memorize menus and the order of questions on my Omnipod. But we now face the problems of today’s modern technology like screen dimming and time-out. This would mean that the push of a button could either bring the screen back to life or go on to the next screen. This is where I absolutely need the Seeing AI app when I’m changing a pod because if I think I’m hitting next when in fact I’m really bringing back the screen, the next button push would discard the pod instead of starting it. We’d need to read our reading from our CGM or read the instruction that tells us there’s a problem. You know, the fancier the tech, the more errors that can happen. So I do think we’ve likely reached the point where new pumps really do require speech. And unfortunately, medical equipment is not covered by the ADA.

We do need to reach the device manufacturing association as all companies participate in this. Many blind people have spoken to this group over the years. We came close to getting something through by way of the FDA, but haven’t scored there yet. But I’d like to see us have the choices available to those who can see. There are some really nifty closed loop systems being tested right now and what I hear from people using them has me drooling like my Labrador. <grin> It will take some creative brain storming as I do not want to give up on a pump, for sure. Stay tuned and 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 <http://www.laurelcreekmusic.com/> 
                Veronica Elsea, Owner
Laurel Creek Music Designs
Santa Cruz, California
Phone: 831-429-6407

From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Matt Davis via Diabetes-Talk
Sent: Monday, August 24, 2020 9:56 AM
To: Diabetes-Talk at Nfbnet.org; alewis at nfb.org
Cc: Matt Davis
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

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