[Diabetes-talk] Pump updates.

Mon Apr 22 00:04:21 UTC 2013

Veronica:

Isn't that what the NFB is all about -- that it is respectable to be blind?

So I agree with you for the most part. But I've never been thrilled about
the ra-ra cheer-leading method of persuasion; it never made sense to me. I
prefer to reason, find the jugular, then cut it. (grin) And we still have
the liability issue to deal with, whether we like it or not. Hell; we can't
even get the warnings off most insulin pen packages.

But we'll keep working on it.

Mike

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Veronica Elsea
Sent: Sunday, April 21, 2013 4:37 PM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Pump updates.

Thought I'd respond to some of your comments, Mike.
First, one thing I forgot to mention that I learned at the conference. I
asked about using things like iPhones as remotes. I found out that the
current issue is that in order to get iPhone software approved by the FDA,
they have to make sure that no other app on the phone can corrupt the
medical one. So what they're actually working on is having the medical apps
installed on a separate part of the chip. Once that is possible, the
potential for using apps that work with VoiceOver as remotes and such goes
way way up. So there is a small nugget of hope in that arena.
Second, the trend in displays for pumps and glucose monitors is actually
leaning more towards text and away from icons and graphics. This is partly
because they're discovering that so much of the training time is taken up by
having to teach the meaning of the silly icons. So one of the nice features
of our beloved Cozmo, and of the new T-slim is just that, all text. The
Accu-chek spirit is the worst when it comes to confusing icons.
As for the continuous blood glucose monitors, they do feature text. They
display a number. The graphic part is the line that shows whether you've
reached that number quickly or slowly. So there's no reason why such a
monitor for us couldn't read the number and then have a cheap sound that
when up or down and did it quickly or slowly. That would give us all the
information we need and it's doable now. 
Third, in terms of pumps communicating with a voice program, for many of
them, they'd just have to enable two-way communication in the software. Our
Cozmo has that now. People at all the companies I've spoken with have said
this is not hard to do. It just has to be done.
And finally, we'll never get any of the companies to do this if we don't
believe they can do it. We do need to kind of cheer-lead them a bit and make
them see that not only is it possible to make medical life-saving devices
accessible to us, but there are benefits to them if they do it. Why oh why
are we more of a liability than sighted people who use this equipment? It's
no more true here than it is for insulin pens. Somehow we have to be visible
enough to be a common part of the landscape so they stop being afraid of us.
Hmmm. Someone has to start pushing on the big engines before anything will
change. And boy, it would make me very happy if in some small way, I could
be part of that pressure and change. Never say never! Not here. <grin>
So let's keep up the sharing, the discussions and those hugs when we need
them.
Veronica

Watch the video as The Guide Dog Glee Club sings "Rehab!" Yes! Yes! Yes!
http://youtu.be/JvakJ5lk6Us
Then find more music from Veronica Elsea and The Guide Dog Glee Club at:
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
Mike Freeman
Sent: Sunday, April 21, 2013 12:31 PM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Pump updates.

Bridgit:

First, I know no one around here wants to hear it, but ... We will NEVER --
and I mean NEVER -- see KNFB Reading Technology develop an accessible pump.
Why? Three reasons: liability, liability and liability. For better or worse,
FDA (and, I suspect all lawyers) view pump development as an aggregate
system development. That is, they will never consider testing a pump add-on
such as a talking remote control or voice read-out box as a separate
certification matter from certification of a pump which presumably already
has been certified. For purposes of liability, they must consider the
*whole* pump, including audible read-out or other control mechanism, as a
single device and certify *its* accuracy before FDA 510(k) certification,
necessary to market the pump, is given. I know this doesn't make sense to us
but it does to them.

Second, adding a voicing function to a pump isn't quite a simple as our
leadership or most of us not in leadership would like to believe. For one
thing, it is by no means clear that the operating systems supporting normal
pump functions will easily lend themselves to inclusion of voicing functions
and tactile controls. Indeed, believe it or not, there may not even be much
text involved, thus necessitating a complete redesign of the pump and
operating systems which will result in going through yet another FDA 510(k)
certification process. For another thing, in the case of such pump add-ons
as continuous glucose monitoring systems which often display their
information as graphs. As I've said at more than one diabetes seminar, we,
the blind, haven't come to a conclusion ourselves as to how this stuff
should be represented in nonvisual form. How  an we expect others to figure
it out, especially when they haven't had experience with blindness?

Third, let's get something straight: moral rectitude has diddly-squat to do
with pump development and marketing. That's based strictly upon whether
companies can make a profit, perhaps with a minor leavening of feeling good
for having done good. And, let's be ruthlessly honest: we, the blind, are a
minority and it is unclear what percentage of politically-active blind folks
(the ones that really count here) choose to identify as blind diabetics and
it is even more unclear how many of *these* use pumps. I know none of us
wants to acknowledge this but we owe it to ourselves not to wear
rose-colored glasses. Moreover, if our Independence Market sells twenty
thousand of *anything,* it's a land-office business. How much more is it
true that marketing of an accessible insulin pump is and always will be a
money-loser. Consider what happened to DDI and Prodigy when Jerry Munden was
still working there: they had a goal of distributing a hundred thousand
Prodigy Voice models. What happened? A lot of excess meters, that's what.

Then why are there talking blood glucose meters? A few people at a few
companies started making talking meters that didn't meet our needs but were
marginally adequate. WE complained and there were people at at least two
companies who listened and figured the marginal cost of perfecting meters
that already talked wouldn't be prohibitive. Thank God. Either that or
someone who was known to someone at the companies was blind and diabetic.
I'm thinking of the example of Lee Iacoca founding a diabetes foundation
because his wife died of diabetic complications.

Am I saying we should stop working on an accessible pump? By no means! But I
believe, as I said earlier, that we owe it to ourselves to be ruthlessly
honest with ourselves and banish anger, sentimentality and wishfull thinking
and leave these to the other organization. (huge grin)

It is for the reasons above that I think we're only really going to be
likely to get a fully-accessible pump through legislation and/or regulatory
action. With apologies to political conservatives, I think it's fair to say
that legal action or legislation is highly unlikely today even though we're
putting our heads together to consider it.

I hope I am wrong.

Bridgit, Veronica and others are doing an excellent job of trying to educate
the generically uneducable. (grin) Keep it up! Who knows: you might succeed.

Anyway, an accessible pump is still on DAN's radar. I've submitted Mr. Kubel
and the PUMP-mate for a Bolotin Award. If he gets one, this will generate
useful publicity.

Now, let the brick-bats fly. The DAN Presidential election is this summer.
(mischievous smile)

Mike Freeman

-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Bridgit Pollpeter
Sent: Sunday, April 21, 2013 11:29 AM
To: 'Diabetes Talk for the Blind'
Subject: Re: [Diabetes-talk] Pump updates.

Veronica,

That conference sounds fantastic.

My diabetes nurse educator I've been working with for years, and who is
now a close personal friend, advocates for a fully accessible pump and
uses my story when speaking at conferences and working with pump
companies. If we had more people out there like this, maybe we would see
more progress with accessible pumps.

My Cosmo warranty was up in August. I plan on using the Animas now,
though I want to check out the other pumps again just to make sure. I am
doing another training May 9 actually. The downside to the pumps I've
looked at is exactly what Veronica describes; unlike the Cosmo, not all
the functions provide an audio cue. When I use my Cosmo, every time I
press a button, it beeps, alerting me that I've successfully operated
that function. With the Animas, I will no longer have this luxury, but I
have found the Cosmo to be the closest to the Cosmo, plus, the screen
can light up, so it's nice for my hubby who has some useable vision if I
need him to look at something in a pinch.

We go around this topic frequently, and a pump is not the right choice
for everyone, but I swear by my pump and hate to go back to manual
injections. For those of us who choose pumps, it would be nice to have a
fully accessible one. And as recently discussed, it wouldn't be so
difficult to create a voice-over to install on a pump that can be turned
on and off just like Apple products.

My hubby, who is getting his masters in computer science, says it really
doesn't need to cost millions of dollars to create such voice-overs.
Kids toys have stuff like this nowadays for crying out loud. This may
not be the right kind of product they typically work with, but have the
guys at KNFB ever considered developing an accessible pump?

And yet again, sighted people dictating what blind people can and can
not do. I'm always flabergasted by this level of conceit, which is what
it is. The gall to assume something can't be done especially by people
who have no first-hand knowledge of blindness. Lots of things use to be
considered impossible: flying to the moon, flying in general, women
working and holding positions of leadership, blind people doing what we
do ... All the scientific discoveries, manufactured inventions and
progress as a species, and we still claim things are impossible. Will we
never learn? Then again we still have primative ideas about land and who
it belongs to, but I digress now, grin.

So anyway, good for you, Veronica, speaking up and doing us a service.

Bridgit
-----Original Message-----
From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf
Of Veronica Elsea
Sent: Saturday, April 20, 2013 3:49 PM
To: 'Diabetes Talk for the Blind'
Subject: [Diabetes-talk] Pump updates.

Hi everyone!
Okay, today my beloved Cozmo pump is officially out of warranty. I
haven't made my future decision yet though. But I have some interesting
things to share with all of you. A few weeks ago I went to a conference
put on by a group called Taking Control of Your Diabetes. If you hear of
one of these happening in your home area, boy I'd sure recommend going.
I really got a lot out of it and so did my hubby. There were all kinds
of break-out groups, exhibits, a nice lunch and good speakers. Workshops
covered everything from pregnancy to sessions for spouses, different
workshops for type two's or type one's, research studies, use of
technology and so on. 
Naturally when we got there, we headed straight for the exhibits to see
which manufacturers were there. I did meet James, the pump mate guy and
we had a nice chat during one of the breaks. So, here's my big discovery
in the exhibit hall. I tell you, I didn't know whether to bust up
laughing or hit my knees and bawl like a three-year-old! I confirmed for
myself that none of the pumps I knew about had an option to turn on
keypad beeps. And just for fun, I went and visited the Tandem diabetes
booth, the maker of the touch screen pump. This is the company that
bought the patents from Smiths Medical, maker of the Cozmo pump. So the
first thing I cleared up for myself was that the screens varied
tremendously in the number of buttons and things for each. That means it
will be tricky to make a template like one can with iphones and such.
And then I hit the big discovery! Would you believe it? Keypad beeps!
Okay, no keypad. But every action, really nicely done audible feedback.
Man oh man oh man! So close! But so far! Needless to say I had a fair
amount to say during the technology workshop. James actually raised the
question about blind people using insulin pumps. The doctor in charge
started in with this, oh yes! They sure can! I know of this one guy, and
he's a world-class skier and he just memorizes the menus and he, bla la
bla. I couldn't stand it and jumped up, saying, stop! I pointed out that
that used to be true but isn't any more. And I asked if sighted people
would accept having to be superman in order to use a pump. Somehow I
guess I just hit one of those moments when I wanted to have someone say
I know this blind guy and he's a really cool person or something like
that. But I was able to point out how some of the simplest things, if
implemented would make a huge difference to us and what was and wasn't
out there right now. The doctors in charge did say to me later that they
were really glad I'd spoken up. If nothing else, maybe a little
education happened that day. 
But of course, now back to my pump decision. The Tandem people did say
they'd be willing to let me try the T-slim for a month and would refund
my purchase if I really couldn't design a template or something. It's
kind of tempting but, oh lordy! In an odd sort of way, if there are
enough things I'll have to give up in terms of doing them independently,
then the T-slim would be the pump to get because it doesn't use silly
icons. This would mean that any sighted person could read the pump to
me. But it's a great choice for someone who still has some useable
vision left. 
I also played with an Omnipod, which is a pump with no tubing. My
complaint about it is the same as that for the continuous blood glucose
monitoring systems. There are so many alarms for things and they all
sound alike. Even for sighted users, they talked a lot about alarm
fatigue. And not being able to read the messages would make things even
crazier for us. For people like me who don't use much insulin per day,
I'd have to make a gadget that would help measure how much insulin I was
putting into the pod. I think I'd end up wasting a lot of insulin over
time. And the pods are still pretty big. I was sorry that Animas didn't
show up though. Medtronic was there and I did talk to them a bit. But it
just bugs me that if you use their easy bolus you don't get to take
advantage of the pump figuring out insulin on board. To me it looks like
wearing a pump without getting the advantages of a pump. In order to
access the wizards all of these devices use, there's no way around it.
We do need a talking pump. And in my personal opinion, a talking
main-stream blood glucose meter wouldn't be bad either. 
Okay, off my soap box for now. <grin> But I'll keep all of you posted on
my upcoming wanderings and adventures. I'm not giving up. Never! And I
do appreciate having a place where we can bat things around among people
with the same desires and frustrations. One of the things I kept
stressing at this conference was that nobody, for whatever reason should
face obstacles when trying to do the right thing for diabetes management
and control. This isn't just cute or cool. It's life and death. And boy,
nobody's leaving me behind. Stay tuned! And thanks for reading. Veronica

Watch the video as The Guide Dog Glee Club sings "Rehab!" Yes! Yes! Yes!
http://youtu.be/JvakJ5lk6Us Then find more music from Veronica Elsea and
The Guide Dog Glee Club at: http://www.laurelcreekmusic.com
                Veronica Elsea, Owner
Laurel Creek Music Designs
Santa Cruz, California
Phone: 831-429-6407

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