[Diabetes-Talk] Animas news

Wed Oct 18 18:11:59 UTC 2017

Sorry not to respond right away. I found this late last night and had a meeting this morning.

I certainly don’t claim to have all the answers for ut, but I think we need to start with the resolutions passed by the convention in 2014 and 2016, that last one containing the Bill of Rights. It states specifically why accessibility is important and will become more important over time, and it lists several things blind people who have diabetes deserve, such as devices that are accessible out of the box and can be used directly, not depending on other technology, devices that cost similar to those used by our nondisabled peers, etc. I believe I attached these resolutions a while back for everyone to peruse, but if I’m wrong about that, let me know. I’ll do it now. 

When the committee met with Parnell Diggs, we talked a bit with CMS, FDA, and the people working on putting technologies together for the synthetic pancreas. We gathered a list of manufacturers of diabetes devices, and attempted to contact them. We had as little luck as others on this list have had. As I noted yesterday, the Government agencies tried to send us to other Government agencies, so we had little effect there either.

But I would point out that we were only getting started. We always had in the back of our minds legislation to make accessibility happen, which could address the various aspects and catch everything without leaving loopholes. We had discussed using the Bill of Rights as the basis for a letter to diabetes organizations, health care providers, etc., to solicit their support on this important journey. We had talked about writing articles and blogs to make the public and others aware that this is, or will, over time, turn into, a life-or-death situation. We discussed the issue, not only in terms of people who have become blind because of their diabetes, but also of people who are blind for other reasons and become diabetic, thus needing the devices, or people who are diabetic and lose their vision over time from diabetes-related or totally unrelated diseases. 

I’m not sure just exactly how this helps each of us get started with our journeys. I am still hopeful that we will get true assistance with this issue from the National Office, and that this will become the priority it deserves to be. We truly need everyone. Not even just DAN members, but all the NFB behind us. 

One thing I’ve started to do is make the case to my friends, many of whom are not blind but have diabetes, or are blind and don’t have it. As a former Registered Dietitian, I talk with my friends who are still dietitians, and who are CDE’s, to see how they feel about devices not being available for their blind clients. Many of them have never had a blind client, so I ask them to consider me their patient and talk to me about how their treatment for a blind client would be affected by the lack of availability of these devices. At our IDAN meeting two weeks ago, we invited Dr. Nancy Kane, the speaker at our first IDAN meeting in 2013, to come back and give us an update on diabetes. She talked a fair amount about pumps and CGM’s, and we asked her to work with us to make endocrinologists knowledgeable of the issues their blind patients, even those for whom they’ve prescribed these devices, face because they are not truly accessible. 

I’d like to be able to have some of us (I’m not a good person to do this) become an agenda item at diabetes conferences, to talk about this issue and its impact on us. I say I’m not a good choice, because I haven’t ever had to try to work with a device that doesn’t work for me.

There are so many ways to go with this. I hope Bern will have the call with everyone she talked about a while back, because I believe we need several committees, not just one, and we need some money for travel, so we probably need a fund-raiser, and there are lots of things to think about and do. I agree with Vernoica that there’s no point in going out and doing everything—we need to be a bit careful to do those things that will truly help. 

I hope this helps. I’m open to helping with this in any way, including the talks I said I’m not best qualified for.

Sandi

Sent from Mail for Windows 10

From: Bridgit Kuenning-Pollpeter via Diabetes-Talk
Sent: Tuesday, October 17, 2017 2:39 PM
To: 'Diabetes Talk for the Blind'
Cc: Bridgit Kuenning-Pollpeter
Subject: Re: [Diabetes-Talk] Animas news

Sandy,

I'm with you. When I say the NFB, I mean us on this list working with the entire organization. But I agree, it's time for action. So, where do we start?

Bridgit

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of sandi via Diabetes-Talk
Sent: Tuesday, October 17, 2017 11:37 AM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: sandi <sjryan2 at gmail.com>
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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