[Diabetes-Talk] More On Dexcom Coverage, I called PresidentRiccobono

Fri Sep 1 14:31:03 UTC 2017

Yes, I agree we need a conference call. I’ll be there.

Sandi

Sent from Mail for Windows 10

From: Bernadette Jacobs via Diabetes-Talk
Sent: Thursday, August 31, 2017 6:50 PM
To: Diabetes Talk for the Blind
Cc: Bernadette Jacobs
Subject: Re: [Diabetes-Talk] More On Dexcom Coverage, I called PresidentRiccobono

Will gain, I have just a bit of good news today!! Bill's surgery is finally going through!!! I am just so happy as a pig in mud!! We have only been waiting all, all, all summer!!! Finally, the time will be here his date of surgery will be on 15 September. At that point, he will have a temporary stimulator put in to see how everything is going and get things set for the permanent stimulator. He has to be awake while doing this. They want immediate feedback. They want to be able to adjust the stimulator so that they can put the permanent one in on 20 September. I am just so happy that finally, finally, finally!!! This is actually going to be happening!!! Glory! Glory! Glory!!!

No word yet on my sister and the rest of the family. Just sent a Messenger to my niece inquiring. Nothing back yet. Will keep everyone posted. Thanks for everyone's concern!! Meanwhile, I too have contacted John Pare.  With everyone, here raising the same concerns, would everyone be willing to do a large conference??? I, for one certainly would. So, if you would like, I will contact Mr. Paris again to set up a conference internets week or so. Is everyone agreeable to this??? If not, please let me know. I will not be offended. But, I would like to do this and work with as many of you as possible. I can assure you. I will be back with further detail if a conference line is set up for everyone to participate. Thanks a lot and have a great day!! Hope everyone gets a good nights rest.

Bern

Sent from my iPhone

> On Aug 31, 2017, at 3:32 PM, Jeanette Kutash via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> If Medicare is not covering the Prodigy Voice, this is new. I was able to get mine as of some time in March. People just aren't providing the proper paper work. Next week when things are calmer for you I will provide you with a detailed message as to what I learned so that you will have it at your fingertips, as I know we said a lot at the DAN meeting at convention. 
> 
> I am so sorry about your current expected losses. Death, even when expected is hard, and when unexpected or so close has to be heart-breaking. Take care of your own needs before you try to pursue with John Pray and if I can help in some way email me at the address in the CC. 
> 
> Jeanette Kutash
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Bernadette Jacobs via Diabetes-Talk
> Sent: Wednesday, August 30, 2017 3:34 PM
> To: Diabetes Talk for the Blind
> Cc: Bernadette Jacobs
> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage, I called President Riccobono
> 
> I'm sorry everyone. I have not meant to wait so long. Just wanted to make sure that before I made appointments with John pray, that my children were in school. Next week, they will be. However, I also got a call early this morning that I lost my brother-in-law. His wife, my sister, her self is dying of cancer as well. She herself is very near death. I've never before experienced a double funeral. However, does not look good for either one. This has all just happened in the last 24 hours. I will keep everybody informed.  
> 
> Yesterday afternoon, there was another lady who called me from Seattle Washington telling me that she was hearing rumblings about Medicare not covering our prodigy voices. Of course, she was highly upset because that's the only accessible meter left out there. I called our friend, Jerry Munden who informed me that this is not true I will be calling to confirm more information with you S med. I will be doing that this afternoon. I, too had to see the doctor this morning for a UTI.  I was actually losing more blood than I realized and the doctor is concerned that there are some bacteria, extra bacteria that we don't know why this infection is happening. She's checking for further cultures. So, any more for my plate???  I will be OK, however. Just a lot going on. And I will keep everyone informed. Hope everyone is having a great day!!!!  
> 
> If that is not enough, my husband Bill will be having surgery soon. We are trying to straighten out some issues between the doctor and the insurance company, as always!! Got to get the left and the right hands in sync. So, hopefully he will have the surgery soon. I will keep everyone informed.
> 
> Sent from my iPhone
> 
>> On Aug 30, 2017, at 2:04 PM, gary-melconian via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
>> 
>> Lets hope so.  
>> 
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of Joy Stigile via Diabetes-Talk
>> Sent: Wednesday, August 30, 2017 10:03 AM
>> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
>> Cc: Joy Stigile <joystigile at gmail.com>
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage, I called 
>> President Riccobono
>> 
>> Hi DAN Membership
>> I followed up with Sandy's email by calling President Riccobono.  He does want to get the ball rolling again.  I told him I want to work on this matter.  President Riccobono is thrilled to hear that.  He sent me over to John Pare because this is his forte and I left him a detailed voice mail message and will follow up with an email later on today!  I have worked with John Pare before and he is a "let's go and get it done" person!
>> Thanks Sandy for all of the info you have sent out.  I appreciate it.  I hope everyone will also contact President Riccobono so we will have accessibility to all Diabetes related equipment.
>> Joy
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of sandi via Diabetes-Talk
>> Sent: Wednesday, August 30, 2017 8:44 AM
>> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
>> Cc: sandi <sjryan2 at gmail.com>
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> Hi Tamara,
>> 
>> You know how they say don’t let blindness hold you back. In my opinion, that’s exactly what your statement does. Yes, I do have an idea who to contact. Contact President Mark Riccobono at president at nfb.org and remind him that in 2014 a resolution was passed unanimously by the convention that diabetes and other medical tools needed by blind persons should be made accessible, and that in 2016 another resolution reinforced the 2014 resolution and set forth a very specific bill of rights for people who are blind or low-vision and have diabetes. Let him know that three years after the original resolution, blind and low-vision diabetics are still struggling to “make do,” and that you’d like the national organization to be accountable for the resolutions passed.
>> 
>> We are a small but ever growing population, and we are not as small as 
>> has been suggested here in the past. If we use that as an excuse not 
>> to do anything about it for ourselves, how can we expect the national 
>> organization to become and remain interested in this issue? So far as 
>> I know, I am the only one who has written to President Riccobono, and 
>> that one email got results, though they were quickly let slip because 
>> of the circumstances I wrote about in my last
>> 
>> Please write specific things like this on the list and to Bernadette Jacobson personally, too, to let the DAN president know that this is your highest priority for the DAN. 
>> 
>> I’ve also heard “We can’t get a bill through Congress right  now, so why bother?” Why bother? Because each of us who cares about this issue needs to talk, not just with each other, but with our family, friends, and groups we belong to, blind and otherwise, to make the very serious point that blind and low-vision people with diabetes are being left behind the best technology for monitoring and treating our disease, an issue which will, in the future, mean that we are sicker, less well-controlled, and die sooner than people with diabetes who have access to new treatments as they are developed. And don’t leave out your medical personnel either. They need to understand that, though there are treatments they can use besides technology, eventually this will become a problem, and now is the time to see that accessibility is included in all medical advances.
>> 
>> Also, talk about the fact that more and more people are going blind as our population ages, and many of them are and will be diabetic, not from retinopathy or other diabetes-related diseases, but from other eye diseases incidental with diabetes. They will not be less blind or less in need of diabetes treatments.
>> 
>> I really hope this helps. The time for members of this list, members of DAN, members of DANs around the country, and any person who is blind or losing vision to contact the NFB and get the information out to everyone we know so that enough people become aware to help us tell the manufacturers, the FDA, CMS, and other government agencies that “small group” is no longer an acceptable excuse. This issue means lives, and will mean more in the future.
>> 
>> I am, as you can tell, more than a touch passionate about this issue. It physically hurts me to read the discussion here about Dexcom, which worked and now may not, or at least has obstacles thrown in your way. It hurts me to know that an artificial pancreas is soon to be here, and it will not be accessible to blind people with diabetes because we aren’t doing the work that desperately needs doing. It hurts me that there are not laws in place to dictate to FDA, CMS, and the diabetes technology manufacturers that they can’t put out one new pill, pen, or piece of technology that isn’t first accessible to the blind and other disabled people with diabetes. If it hurts you, too, don’t ask who can do something about this? You can! And I can. Let’s get busy, together, if possible. What can I do to help you pick up my passion?
>> 
>> Sandi
>> 
>> Sent from Mail for Windows 10
>> 
>> From: Tamera via Diabetes-Talk
>> Sent: Tuesday, August 29, 2017 10:34 PM
>> To: 'Diabetes Talk for the Blind'
>> Cc: Tamera
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> I don’t' think there are enough of us to  bother with. Any ideas on whom to contact? Make an appeal?
>> 
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of Eileen Scrivani via Diabetes-Talk
>> Sent: Monday, August 28, 2017 6:45 PM
>> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
>> Cc: Eileen Scrivani <etscrivani at verizon.net>
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> I agreedd to not a thing. They told me they would look into it and I ask that they get back to me one way or the other with what Medicare has to say.
>> 
>> I clearly need to use the app and I refuse to lie or commit purgery to get a device that should be covered for me. And if I did lie about not using the app then the end result could not only be that I’d wind up owing Medicare a boat load of money back, but more importantly, there is a potential risk of losing my health insurance coverage. Something I will never put on the line. Dexcom should fight this battle for people if they want there device to sell.
>> 
>> Eileen
>> 
>> From: Tamera via Diabetes-Talk
>> Sent: Monday, August 28, 2017 8:14 PM
>> To: 'Diabetes Talk for the Blind' 
>> Cc: Tamera
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> The last time I was sent sensors while awaiting the Medicare verdict... I was told it was in negotiations over a meter and strip being part of the deal. So, the info today supports that.
>> So, did you say you will only use receiver and no app under the Medicare agreement?
>> I am type 1, totally blind, live alone and have "NEVER" even attempted the receiver.
>> Tamera
>> 
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of Eileen Scrivani via Diabetes-Talk
>> Sent: Monday, August 28, 2017 5:03 PM
>> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
>> Cc: Eileen Scrivani <etscrivani at verizon.net>
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> That’s interesting. When I spoke with them last week, I was told I’d be sent a box with 4 of the inserts that I believe are the CGM, a transmitter that connects to the monitors, and 1 receiver. They did not say a thing about test strips or glucose monitor. Are you 100% certain that the testing portion is a get it like it or not situation?
>> 
>> This sucks!
>> 
>> Eileen
>> 
>> From: Tamera via Diabetes-Talk
>> Sent: Monday, August 28, 2017 6:18 PM
>> To: 'Diabetes Talk for the Blind' 
>> Cc: Tamera
>> Subject: Re: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> I just got off the phone with Dexcom, and here is more...
>> You do have to state you are not using an App, in fact she said if Medicare checks and you are, they will not cover your supplies. In fact you are making a legal statement you will not use an app with the Dexcom. 
>> Secondly, we get a meter and strips with each month supply of sensors. not accessible. So, I would guess Medicare will no longer cover my Prodigy strips either and monthly send me BS I will not use.
>> Wow, where is the justice in this.
>> Tamera
>> 
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On 
>> Behalf Of Eileen Scrivani via Diabetes-Talk
>> Sent: Friday, August 25, 2017 6:17 AM
>> To: NFB Diabetes Talk <diabetes-talk at nfbnet.org>
>> Cc: Eileen Scrivani <etscrivani at verizon.net>
>> Subject: [Diabetes-Talk] More On Dexcom Coverage.
>> 
>> Hi All,
>> 
>> Thought I’d just let you know what nonsense I’ve gotten from Dexcom. 
>> 
>> A few days ago I told you a rep from the company called me back saying that Medicare forces sighted insureed to use the Dexcom receiver and not the phone app and that a blind person who would need the phone app would be able to use it and be covered. Well, yesterday, I got another call from a different Dexcom rep ready to start the paperwork and initial phases for applying to insurance to find out what my coverage would be. As the form was being read off to me, the rep read off the Medicare statement that Medicared insured persons are not allowed to use the phone app, so I stopped the guy and explained my situation and what I was told only a day or two prior.
>> 
>> I then got put on hold while he went off to confer with a supervisor. And guess what? – It appears that people who are blind and covered by Medicare may or may not be covered. Dexcom cannot give a definitive answer to my questions. They are looking into it and I asked they get back to me no matter what the outcome.
>> 
>> Truly very frustrating that they don’t know.
>> 
>> More to follow!
>> 
>> Eileen
>> 
>> 
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