[Diabetes-Talk] Animas news

Tue Oct 17 18:42:02 UTC 2017

This may sound silly, but one of the lists I'm making has to do with things to use in our argument. I found reviews all over the internet where people stated that they'd returned the Medtronic pumps because of the screen-locking issue. One was in the midst of a giant bike race and didn't want to stop to fish the pump out and do the whole unlocking thing to deal with the alarm. But eventually she couldn't stand the alarm going off every minute so she pulled over and lost some time in the race. All for an alarm telling her to calibrate the CGM. What about people driving? What about someone making an important presentation. I suppose it's the old curb cuts help those with grocery carts and strollers too, kind of thinking.
I still haven't found the right source for my FDA idea but I'm not letting go of it either. Not yet anyway.
When I spoke with the Johnson and Johnson people in 1989 about accessibility, their response was, where do we draw the line? Do we have to make our meter work for someone with no arms? My answer, well, if they lost their arms due to a diabetic complication, ummm, why not? 
And of course, this is one of the real drawbacks to our "for profit" medical system. You get Christmas bonuses for not spending money, not for making a better product. That's why it is going to take some real creativity on our part to make this happen. But trust me, I'm not giving up. Stay tuned!
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 via Diabetes-Talk
Sent: Tuesday, October 17, 2017 10:53 AM
To: Diabetes Talk for the Blind
Cc: sandi
Subject: Re: [Diabetes-Talk] Animas news

Hi Veronica,

One comment: I certainly realize the value of this list and the need for it. We all have had quite a few questions answered, and some camaraderie with others who face our issues on this list. I wouldn’t stop using the list. It just seemed to me I’d seen a lot of “Oh, I hope manufacturers are thinking of us,” and “NFB should do something.” And I don’t disagree with any of that. But we’re the only ones who can make it happen.

I wish all of you facing this latest problem the best of luck. Surely people with diabetes who aren’t blind are finding this an issue, too, though of course they can, given the money and a prescription, select whatever pump they want and start using it. 

Sandi

Sent from Mail for Windows 10

From: Veronica Elsea via Diabetes-Talk
Sent: Tuesday, October 17, 2017 12:21 PM
To: 'Diabetes Talk for the Blind'
Cc: Veronica Elsea
Subject: Re: [Diabetes-Talk] Animas news

First, Alan, even the letter from Animas states that they will continue to provide supplies so I'd double-check and see what someone else tells you. 
As for what we do, here is the value in talking among ourselves here. We've already seen the number of different answers we've received from Dexcom and Animas. Before jumping to the top, we do need to do our research and get the most accurate information we can find. If some of us do have the time to research, say, the remaining pumps, then as a group we are more able to report on the actually state of accessibility for all of us. In addition, if you go to the web sites of any of these manufacturers, they are covering their behinds by saying things like, this pump should not be used by those who are blind or deaf. So frankly, for those of us who have been figuring out how to get around lack of accessibility but pushing the companies to let us use their devices, some real thought on how to approach them should be involved. Then as we talk, plans can evolve. And yes, I agree we need to help those at the top in the NFB to understand the importance of this access, as you said, Sandy. 
For me who uses the Animas pump, frankly, I gave myself the week end to just be in stun mode, since this letter came as a rather sudden, out of the blue sort of surprise. I am starting by placing calls to my contacts at the other pump companies. I'm trying to work my way past the rumor mill and see if I can find out what any future plans might be. I'm also trying to find out why Medtronic discontinued the iPhone app that one could use with the 530 pump to read some information from the pump. 
That's why I was kind of hoping for the conference call or some way for those of us who use these devices to insure that when NFB did take any action, it was done with accurate, up to date information. 
So, my starting place, talking here is serving to start calming me down so that I can get past pannick mode and then begin to take useful action. The hard part is that I was well into research about the Dexcom/Medicare issue when bam! Surprise! Here's one more thing. I can't ignore the frustration I feel, the disappointment I feel and dare I say it, the wish that I wouldn't have to fight so hard for everything. But sadly, that is the reality. So I process the emotional side of things and then start doing my homework. Anyway, not a complete solution, I realize. But I'm so grateful to be able to have this list so I can work through the various stages which lead me to, ummmm, something! <grin> I do find it tougher to advocate when I'm scared. 
The one thing I did was to convince Animas that the letter they sent out was a bit unclear about a few things. So now I am watching their web site to see if they post the promised clarifications. After all, our responses to this event will be very different if we only have a couple of months or if we have some time to work on other pumps. It is really nasty for anyone who is today making the decision to start using a pump though. So for starters, I will keep doing my homework and am heartened to hear that we can group together as an affiliate to also reach our President and see where we go from here.
Thanks to all of you, so much.
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 via Diabetes-Talk
Sent: Tuesday, October 17, 2017 9:37 AM
To: Diabetes Talk for the Blind
Cc: sandi
Subject: Re: [Diabetes-Talk] Animas news

Frankly, we are the NFB. The list on which we’re having this conversation is provided through the NFB, we have already passed two resolutions about accessibility of diabetes devices, making this an issue of policy at the NFB. I’d say that where we go from here depends on people on this list, not looking for someone else to state our case, but finding out who needs to hear it and stating it ourselves. I don’t know how many people actually wrote to or talked with President Riccobono the last time I wrote, to ask that this matter be given the priority it demands and deserves. What came of it was that DAN was assigned, by John Pare, to a brand-new staff member, with no background in or knowledge of this issue. Because of the problem with the Dexcomm at that time, he contacted the CMS, (Centers for Medicare and Medicaid Services), who told him they’d get back to him—they weren’t aware of the problem. That’s been weeks, and it will never happen. It hasn’t before, and it won’t start happening now. 

You have said well that if something doesn’t happen nearly immediately, we’re just going to be left out and left to die early because of lack of accessibility. But the time for sitting here hoping something will happen, stating our case to the choir, and doing nothing about it has gone. The manufacturers don’t care about us. They made that adequately obvious in the 90s when they refused to make even one glucose meter that was accessible to blind people. The Federal Government will not do a thing for us, unless Congress tells them to. They have said this to us by the FDA (Food and Drug Administration) trying to send us to the Department of Justice, for God’s sake, and the CMS telling us to talk to the Access Board. Neither of these agencies has any power or clout to get things done about this—they are dodges. On the other hand, no device or drug gets onto the market without FDA’s approval, or into the Medicare system without CMS approval. 

So we’ve tried the government and the manufacturers. One manufacturer actually tapped his pencil on his exhibit table and told me straight out “Our company will never work on accessibility. If we have to, it will be against our will and it will be war!” Then he left me standing there—at his table! The people most interested at the time were Animas and they told me it was a very low priority for them. And those conversations were in person, in 2013, I think. Maybe 2014.

I will personally write to President Riccobono after writing this message to all of you, but if I’m the only one who does, nothing will happen. This has to be made an issue that’s important enough in the organization that people will work on it locally, statewide and nationally. Emailing each other about its importance, saying someone should do something, and feeling helpless, can no longer work! We are the people who must act—now!

I hope this has come to you as a call to action, rather than as being vicious. I am one of this group who has been trying since the fall of 2013, to make accessibility happen for people who are blind and have diabetes. I’m passionate about this, and I’m still working. But I’ve heard, even from people on this list, that my hopes are futile and my passion isn’t enough. “We’ve tried before and no one will call us back.” This is true, I’m not disputing that but if, as a group, we only talk among ourselves and don’t even try, how do we know? Let’s work together, inside and outside the NFB if necessary, to get this issue known! I can tell you that doctors don’t know about it. They hand out inaccessible devices all the time and expect that we will make them work as well as we can. They recommend meters we know won’t work, and say “Oh well, you can get someone to help you.” Perhaps what we need here is not only blind diabetics, but the whole diabetes community, with us—endocrinologists, CDE’s, dietitians, pharmacists, people with diabetes who can actually use the new devices and have found that they change their lives—organizations like the American Diabetes Association, JDRF, and others. I learned at my job to partner with those who can help the cause. In my opinion, this is not being done for this cause. And we’re taking too long, and we’re failing! 

Join me! Help!

Sandi

Sent from Mail for Windows 10

From: Bridgit Kuenning-Pollpeter via Diabetes-Talk
Sent: Tuesday, October 17, 2017 9:33 AM
To: 'Diabetes Talk for the Blind'
Cc: Bridgit Kuenning-Pollpeter
Subject: Re: [Diabetes-Talk] Animas news

Frankly, the NFB really needs to be on top of this. Accessibility needs to be a priority in health care, especially for insulin pumps because they are the future of diabetes management. When artificial pancreases release in the next year, we will be left behind, and that is just wrong.

Bridgit

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Jamie Gurganus via Diabetes-Talk
Sent: Friday, October 13, 2017 7:08 PM
To: diabetes-talk at nfbnet.org
Cc: Jamie Gurganus <jamielgurganus at gmail.com>
Subject: [Diabetes-Talk] Animas news

I'm sure the rest of you also received this rather disturbing and shocking news from Animas today.  They are no longer going to be manufacturing insulin pumps and turning over all customers to Medtronic.  They are offering a free Medtronic 630G, especially for those  customers whose Vibe or Ping expire before 2019.  They will continue offering supplies to everyone, but who knows how long.  First Accucheck and now Animas.  And, the two pumps that were the easiest for blind diabetics to use.  

                                                                Jamie

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