[Diabetes-Talk] future CGM and pump accessibility

Sat Nov 9 18:26:59 UTC 2019

Hi,

As Veronica has mentioned, it is as important to understand that companies
that sell any device are not, I repeat, are not subject to making their
products accessible to other than the "general public". Sad, I agree, but
for these companies to begin they would have to conduct the same FDA process
as they did when they first got authorization from the said FDA. I have
spoken to the CEOs of these companies and without going into detail, they
fear those disabled for the reason is simple, they do not want to have the
harassing communications as those of us and more, they do not want a
continuous fire storm of being deemed anti this or anti that. I agree with
all your comments but there are individuals/Companies that will make news
soon enough regarding a fully accessible product that is to come to be but
as I need to have you all understand, nothing within this process from
concept through design/engineering and through the FDA and fund raising
phases, nothing will be even remotely available for a couple years down the
road.

A comment I've heard that the best change is through your or our actions is
so very true. We all can do more focusing on making the changes we need and
want and I'll not say more to not upset anyone other than it is we who must
do what is needed.

Thank you again Veronica for your points. It is difficult for we all want to
be independent or remain independent. Nowhere is such more guaranteed other
than our own actions.

Best and hang tough,

Rick

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Veronica
Elsea via Diabetes-Talk
Sent: Saturday, November 9, 2019 1:07 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
Subject: Re: [Diabetes-Talk] future CGM and pump accessibility

Hi Verlyn.
I wish I had some easy answers for you here, but truthfully, I don't. Many
of us have written letters and letters and letters over the years and
nothing has happened. Of course, that doesn't mean don't write. You never
know when some right person might see it. Clearly we need to approach this
from many angles, with the companies, with the medical device manufacturers
association, the FDA, maybe Congress and others. I have a few projects I'm
working on here.
The biggest problem I'm running into has to do with some changes online.
Initially, the beauty of the internet was that one could find anyone. Yet
because that became so easy, important people made themselves really hard to
find. I'm finding it rather tricky chasing down CEO's and such. 
As for managing your diabetes, the truth is, where sighted people are,
within a few years, once the devices are inserted, they talk to each other
and just handle everything. So if that happens, life will get a lot easier
for us, well, some of us. We won't have the speech. But since you could have
someone following your glucose levels from afar, they could call you and
give you instructions. I'm sorry I am not very knowledgeable about assisted
living facilities. I can't imagine there aren't some where you have a little
apartment where you could keep your cat. I did know of one place, it was in
Arizona, where you couldn't keep your own pets but they had a resident dog
and cat that residents could interact with. So it was a shared animal, but
everyone said it was better than no animal. 
Sorry I couldn't get more specific this morning but at the very least,
please know that others are also thinking, trying and doing as well. 
Thanks for your thoughts and please keep us posted.
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
Verlyn Baldwin via Diabetes-Talk
Sent: Saturday, November 09, 2019 9:24 AM
To: diabetes-talk at nfbnet.org
Cc: Verlyn Baldwin
Subject: [Diabetes-Talk] future CGM and pump accessibility

Hi,

Please advise me as to the best direct ways to make an impact to get the
manufactures to make their CGM's and pumps accessible for all levels of
disabilities.

It has been suggested by my local Medtronic's representative that letters to
Medtronic CEO's would be the best contact.
She suggests this as they are the ones that make the decisions which
upcoming products to focus on. Obviously Medtronic's has many lines of
products in addition to their diabetic line.

Also, another concern I have is my continued care in regards to management
of my diabetes as I become unable to do so independently. My research thus
far has given me two options. 
One to train and hire assistance (which in reality is cost prohibited) or
move to a supportive care facility in Chicago. The later will not allow
occupants to have any other animal than a guide dog. I have had a cat for
several years which assists me in emotional support. This is verified by my
doctors.

Your comments and suggestions are appreciated,

Verlyn Baldwin
letsdanceintx at gmail.com

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