[Diabetes-Talk] Voice-enabled CGM benefits blind patients with diabetes

Sat Aug 29 00:00:43 UTC 2020

Choose not to help? I still have all of the emails I sent you, giving you my phone number, offering to spend time on the phone bringing you up to speed on how various pumps and CGM's work. Every time I mentioned Google or various companies, you said you already had contacts there and didn't need me. This came after six months of working with the medical equipment task force, which was disbanded when you took over. I was just about to come to Baltimore to help demonstrate modern pumps to NFB's technology team when suddenly they left NFB. You have no idea how many FDA meetings I've crashed, how many companies I've still been chasing, back doors I've been seeking, to say nothing of finding my own way of adapting equipment so that I can use it to manage my diabetes. I have written up instructions in order to help other people who are blind so that they can have an easier time learning a CGM or whatever. I still make myself available to anyone who wants. I'm not interested in being tacked on to dish washers and the like because frankly, there might be a cure for diabetes before all of this stuff goes through the Access board. Technology for managing diabetes is changing faster than that. As I predicted four years ago, in discussions with the NFB, companies are now testing closed loop systems where everything is completely integrated. You don't even have to give a bolus, it just figures everything out. I think everyone will have access to something like that in just a few years. Everyone but us, of course because at best we'll gain today's technology in about 12 years. I have been trying to get NFB's attention on this arena. I gave the NFB the information and contacts I had when the FDA promised to set up a medical equipment accessibility task force. Nothing happened there. I've shared everything I found and continued to keep looking. Please don't accuse me of choosing not to help The NFB chose not to utilize my help. It truly broke my heart. Why? Not because I care about the NFB, not these days. But my life truly depends on it, as do those of the wonderful people on this list and around the country. I tried to help but was clearly not wanted. I had to take a break and bring back the business I'd sacrificed for that task force. I truly had hope during that time, working with some very smart people on that task force. It was the first time I really felt like we could get somewhere. I can't tell you how bad of a gutt puncher it was to have everything dropped so suddenly. It was heart break that stopped me as I tried to think of how to regroup. I don't like feeling alone doing this. But that's how it feels. 
I will say what I tell all organizations. Please pay attention to how you treat your volunteers. Burning us out does not serve any organization. It saddens me to see what happened here. But please don't mischaracterize my actions. I really chose to help. I have never closed my business for six months so I could volunteer for something. But I saw the chance to prioritize the lives of people who are blind and I was willing to give everything I had to give. Many on this list have worked tirelessly to do their part to educate and help move things forward with respect to accessible pumps in particular and I give them a ton of credit. We all brought something to that task force. But if the NFB wants us to do the work ourselves, as you said, Anil, then guess we'll have to do that. If there's something truly meaningful to do, I will surely do it, along with many others here. We're desperate for the same quality of life afforded those who can see.
I am just so sorry that for the moment, the NFB seems to have lost its way on this project. Hope was a valuable thing.
Thanks for reading.
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 Lewis, Anil via Diabetes-Talk
Sent: Friday, August 28, 2020 1:56 PM
To: Diabetes Talk for the Blind
Cc: Lewis, Anil
Subject: Re: [Diabetes-Talk] Voice-enabled CGM benefits blind patients with diabetes

Noted, there are those that choose not to help, and that is certainly your prerogative. The option now is too complain about what did not happen, or to help move things forward. And we can definitely use as much help as can be provided. your choice.

Respectfully,

Anil

Anil Lewis, M.P.A.
 (410) 659-9314 x 2374 
National Federation of the Blind

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Jamie Gurganus via Diabetes-Talk
Sent: Friday, August 28, 2020 4:22 PM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: Jamie Gurganus <jamielgurganus at gmail.com>
Subject: Re: [Diabetes-Talk] Voice-enabled CGM benefits blind patients with diabetes

 I was thinking the same thing. Glad you said it! How are things in your smoky world?

    Jamie

Sent from my iPhone

> On Aug 28, 2020, at 3:11 PM, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> Duh! Those of us who have been using CGM's for years have known this. But since it's at an NFB center, suddenly it matters?
> Sorry.
> 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 Lewis, Anil via Diabetes-Talk
> Sent: Friday, August 28, 2020 10:52 AM
> To: Diabetes Talk for the Blind
> Cc: Lewis, Anil
> Subject: [Diabetes-Talk] Voice-enabled CGM benefits blind patients with diabetes
> 
> Voice-enabled CGM benefits blind patients with diabetes
> Medwire News 
> Laura Cowen 
> 
> Using voice-enabled continuous glucose monitoring (CGM) may help improve glycemic control and reduce severe hypoglycemia in legally blind patients with insulin-treated diabetes, US researchers report.
> Writing in Diabetes Technology & Therapeutics, H Kaan Akturk and colleagues from the Barbara Davis Center for Diabetes in Aurora, Colorado, explain that diabetes management can be challenging in this group of individuals because “[i]nsulin administration products such as pens and pumps and glucose monitoring systems are not widely optimized for visually impaired patients with diabetes.”
> The first and, at present, only CGM device to address this is the Dexcom G6 system, say. Akturk et al. They explain that Dexcom G6 users can ask the voice-enabled Siri feature (Apple Inc, Cupertino, California, USA) to read out their glucose readings and display their graph directly on a locked smartphone screen.
> In the current study, the researchers retrospectively reviewed the impact of this feature in seven legally blind patients (mean age 49 years) with diabetes (mean duration 43 years) who were on intensive insulin therapy. Four of the participants were taking insulin via multiple daily injection and the remaining three were using an insulin pump.
> The team found that, after 12 months of Dexcom G6 with Apple Siri use, there was a significant reduction in glycated hemoglobin. At baseline, mean levels ranged from approximately 7.2% to 10.0% (55–86 mmol/mol) among the patients, while after 12 months this range was approximately 5.0% to 8.8% (31–73 mmol/mol).
> Furthermore, time spent in the target blood glucose range (70–180 mg/dL; 3.9–10.0 mmol/L) increased significantly from an average of 50.9% at 3 months to 56.8% at 12 months, without a corresponding increase in time spent in hypoglycemia.
> Indeed, the mean time spent in hypoglycemia (<70 mg/dL; 3.9 mmol/L) was 2.3% at 3 months and 2.2% at 12 months, while the mean time spent in severe hypoglycemia (<54 mg/dL;3.0 mmol/L) was 0.6% and 0.4%, respectively.
> There was also a reduction in the number of severe hypoglycemia episodes requiring medical assistance. In the 12 months prior to initiating Dexcom G6 with Siri use, one patient experienced three episodes and five patients each experienced one episode. By comparison, there were no such episodes recorded in any of the patients in the first 12 months of Dexcom G6 with Siri use.
> Akturk and co-authors point out that the Dexcom G6 Siri feature does not alert patients by itself. They say that patients “must use [the] Dexcom app on the smartphone with customizable loud alert settings to be alerted for hypoglycemia and hyperglycemia.”
> They say that patients can then ask Siri their glucose level and proactively improve diabetes control.
> The team believes that “[i]nstant accessibility to glucose levels on CGM may decrease the constant supervision of visually impaired patients on intensive insulin therapy to caregivers and may decrease the response time for hypoglycemia.”
> medwireNews is an independent medical news service provided by Springer Healthcare Ltd. © 2020 Springer Healthcare Ltd, part of the Springer Nature Group
> https://www.medwirenews.com/diabetes/voice-enabled-cgm-benefits-blind-patients-with-diabetes/18311284
> 
> Anil Lewis, M.P.A.
> (410) 659-9314 x 2374 
> National Federation of the Blind
> 
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