[Diabetes-talk] DAN Seminar in Dallas

Sun Jun 24 20:07:38 UTC 2012

Chanelle:

First, although I have no objection to some sort of on-line petition about
the Pump-mate, it is my view that such efforts are worth just about as much
paper as they take -- nothing. Why do I believe this? Because it's
impossible to verify signatures on an on-line petition. So en enterprising
individual or group of individuals could write such a petition and then
spoof a bazillion different email addresses and sign as each one. So I
consider such efforts wasted bandwidth. I realize, however, that there are
plenty of folks who disagree with me.

Second, I may not be the right person to discuss the Technology Bill of
Rights or the paired-down version we pushed this year -- the home Appliances
Accessibility Act (HAAA) which specifically covers home medical devices. I
think Lauren McClarney of NFB staff is handling this issue. However, it is
my impression that it has not gone anywhere this year and I believe will not
as long as we have such congressional gridlock. But I truly believe this
bill or one like it will be the only truly effective way to
persuade/encourage/force manufacturers to produce accessible medical
devices.

Third, although I truly believe that we need accessible diabetic care
equipment including accessible insulin pumps, I (who use insulin pens) am a
bit uncomfortable with the assertion by dedicated pumpers that the pump is
*necessary* for good diabetes control. If they'd insert "for some people"
into the preceeding sentence, I'd agree wholeheartedly. And if a person is
using an insulin pump because other methods didn't work for them (for
whatever reason), by golly, it (the pump) should be accessible.

In your case, I concur completely that it would be a good idea to get that
8% A1C down. Good luck!

To the wall, comrades!

Mike

-----Original Message-----
From: diabetes-talk-bounces at nfbnet.org
[mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of Chanelle Allen
Sent: Sunday, June 24, 2012 11:42 AM
To: Diabetes Talk for the Blind
Subject: Re: [Diabetes-talk] DAN Seminar in Dallas

I won't be able to come to convention or make it to the DAN seminar, but I 
am eagerly awaiting the recording--especially with a demonstration of the 
pump mate. I would be happy to help in efforts for persuading Medtronic to 
cooperate with James Kubel. Would it be possible to develop an online 
petition to present to Medtronic? The Reading Rights Coalition sent a 
petition to the Authors' Guild several years ago for not restricting the 
text to speech feature on a Kindle. I don't remember how successful that 
was. Is the Technology Bill of Rights coming any closer to being passed?
A talking pump or remote is definitely justified due to the fact that 
diabetes is becoming more prevalent, which often results in complications 
such as blindness. Furthermore, insulin pump therapy improves blood glucose 
control. I believe that my A1C would improve if I could have greater control

of my pump and an integrated management system. I need to get my H1C below 
the 8% range where it has been hanging for a while--with or without a 
talking pump.

Chanelle

Chanelle

Chanelle

--------------------------------------------------
From: "Mike Freeman" <k7uij at panix.com>
Sent: Sunday, June 24, 2012 12:31 PM
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Subject: [Diabetes-talk] DAN Seminar in Dallas

> Greetings, everyone.
>
>
>
> At this year's NFB convention in Dallas, the annual seminar and meeting of
> the NFB diabetes Action Network, a division of the National Federation of
> the Blind, will take place in the Rosetta Room, Atrium mezzanine, from 
> 12:30
> p.m. to 5:00 p.m. on Monday, July 2, 2012. Depending upon how much general
> discussion there is at the close of the seminar, we may finish a bit 
> earlier
> than five o'clock. Registration begins at 12:30 p.m. and the 
> seminar/meeting
> proper begins at 1:00 p.m. In addition to my presidential report, we will
> have presentations on both talking prescription pill bottle systems - that
> of Prodigy and that of envision America. WE will have a discussion of
> current efforts to develop an artificial pancreas (some of the systems are
> in the early stages of human trials) and the problems of making these
> systems accessible to the blind from the get-go - something which has to
> date not been considered. We will have our usual DAN business meeting and
> hold elections for all DAN officers and members of the DAN Board of
> Directors. We will have an idea-generating session of possible 
> fund-raisers
> for DAN along with a discussion of projects DAN members would like to see
> the division undertake during the coming year.
>
>
>
> And we will have a wonderful surprise! Some of you may have read on our 
> list
> of the efforts of Access Solutions, Inc. to develop a fully-accessible
> remote control that will talk wirelessly to most Medtronics insulin pumps
> and the glucose meters that go with them, the Pump-mate, thus making an
> insulin pump system fully accessible to the blind. Access Solutions has 
> run
> into a stone wall in its efforts to secure a partnership with Medtronics 
> to
> perfect and obtain FDA approval to market the device once it has been 
> fully
> developed and tested. Access Solutions has come to NFB to assist in 
> getting
> Medtronics' attention.
>
>
>
> Mr. James Kubel of Access Solutions will be at the Dallas convention and
> will speak at our DAN seminar. I am certain that he will have a Pump-mate
> device with him that he can demonstrate for us during the seminar.
>
>
>
> As last year, I will record the seminar although it will of necessity not 
> be
> of professional quality, I being unable to connect my Victor Reader Stream
> or BookSense to a sound system if one is present.
>
>
>
> Mrs. Jernigan knows the room was quite full last year so we can hope the
> room this year is a bit larger.
>
>
>
> I invite everyone interested in diabetes, especially as dealt with by the
> blind, to come to the DAN seminar, especially those who yearn for an
> accessible insulin pump. You won't want to miss it!
>
>
>
> Michael Freeman, President
>
> Diabetes Action Network
>
> National Federation of the Blind
>
>
>
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