[Diabetes-Talk] 2019 NFB Legislative Priority

Sun Feb 10 22:28:26 UTC 2019

Hi Veronica,

The other part of that is that once the closed-loop systems are available and working well, the companies that currently make pens and glucose meters are going to either scale way back or stop making those things. After all, everyone will have the closed-loop system, right? It’s the very kind of problem with the pumps right now and, maybe less so, with the CGM’s. 

Sorry if anyone thinks I’m just ranting. I’ve been working on this thing since 2013, and have already kept it from being attached to appliances a second time, or to the Orphan Drug Act (anyone see a problem with that?). Twice I’ve written to President Riccobono, and twice I was part of a group that began working on the issues involved. Both times the groups fell apart because staff left the National Center, and then, apparently believing we’d done enough, the powers-that-be just wrote this Washington Seminar piece. 

I appreciate all the work this group does to encourage each other, help each other through the red tape and the processes, and the craziness, and I very much appreciate the hard work that you’re doing to try to make inaccessible technology a bit less inaccessible. I hope that, together, we can find a way to make this work. I am not in need of any of these devices at the moment—likely never will be—but I have two sons who are diabetic and in their 40’s. One’s now on insulin. If they lose their vision and need these devices and I haven’t fought for them, what kind of mother am I? And I don’t find the Prodigy Voice particularly helpful for me, so I am fortunate to have a husband who works with me to get blood on a One-Touch Verio strip and read me the results. But not everyone has that help available either.

Thanks, Bridgit, for your work on the Code of Conduct. It’s already worked here in Iowa. 

Sandi

Sent from Mail for Windows 10

From: Veronica Elsea via Diabetes-Talk
Sent: Sunday, February 10, 2019 2:05 PM
To: 'Diabetes Talk for the Blind'
Cc: Veronica Elsea
Subject: Re: [Diabetes-Talk] 2019 NFB Legislative Priority

Here's the problem I have. Let's look at what the lay of the land is for
sighted diabetics. I'd say, within three years or so, well, unless you have
Medicare, most diabetics will be using closed loop systems. Program your
pump with attached CGM and unless there's a problem, forget about it. This
means steadily regulated blood sugars, real sleep at night, not being
interrupted by alarms, but just taken care of. Anybody here want that? So
given what I know of how the rule making works with the access board,
anybody else wanta sit around for 7 to 10 years while everyone has that and
we continue to struggle with outdated stuff?
Let me add something else here. If I get in trouble for this, so be it. Last
year, the NFB did create an accessible medical device task force, made up of
really committed, knowledgeable and hard-working people. Some of us worked
our butts off for 6 months, leading up to the convention. We were trying to
pool our knowledge, information and contacts to come up with real workable
strategies. It involved educating everyone who didn't use various medical
devices on how they worked and what our daily lives were really like. The
group was focused on diabetes to start. Unfortunately, after our two
excellent NFB assistants left, the committee was transferred over to the
Jernigan institute where it all but died. No more meetings, one blog post,
that's it. I'm sorry that such a hopeful endeavor fell apart. This isn't
something that can be handled in a two-minute session and the dropping off
of a folder. If we don't get the manufacturers on our side, we're nowhere. 
And just for the record, the ACB is no further along either. If I partner
with any organization, I'm more than willing to do the homework, the hard
work and give it 110 per cent. If there had been some discussion with the
task force as to how things would be combined and rolled out, maybe. But
there wasn't. If the organization wishes to make something a priority, why
was there no question sent here or to the task force about what is most
important to us? So I say this with no guilt as I have really been putting
in hours and have been committed to finding real progress in a timely
manner. That's still true. But I am discouraged here. I won't go through all
the strategies we discussed here because that's probably not fair anyway. My
number of phone calls has dropped off a bit lately because of all of the
hours I've had to spend on the phone with Dexcom and Medicare. And most
definitely, I'm all in favor of educating legislators regarding our needs.
Among other things, they are the ones who set FDA guidelines. Why isn't
accessibility of medical devices part of their approval process? Right now,
by the time devices have FDA approval, we're already too late. So please
understand, I'm not ranting here just because it's fun. We need a
coordinated, focused and persistent effort in order that we all can thrive
and survive in this age where an increasing amount of technology is required
to do so. 
We also need to respect and value our volunteers along the way. This is life
and death. I'd give up my business if I knew how to use my time to really
further the effort, I would. I care about the health of all of my friends. I
care about those who count on an organization to speak up for them because
they aren't able to do so. It goes deep, really deep for me. I suspect it
does for all of you too. I will continue to offer my services wherever they
can make a difference. I'm just concerned that once something's buried in a
general bill, everyone who has any authority will think we're covered. If
things take so long, where has the NFB been all these past years? Just
asking questions.
Okay, perhaps I can spark something but I truly don't know all of the
governmental contacts myself. Time to see what we can address and do
concurrently. Thanks so much.
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
Milton Ota via Diabetes-Talk
Sent: Sunday, February 10, 2019 11:23 AM
To: diabetes-talk at nfbnet.org
Cc: Milton Ota
Subject: Re: [Diabetes-Talk] 2019 NFB Legislative Priority

Hello All:

I being the one that posted the information about the NFB's Legislative 
Priority, let me explain why this became a priority for this years 
Legislative Washington Seminar.

Over the past few years at the National convention resolutions were 
passed by the convention for accessible medical devices used in the 
home, exercise equipment that either you buy or use in a gymn that you 
pay for membership and home appliances that manufacturers continue to 
produce that are not fully accessible.
Granted that we have seen talking microwave ovens, and most recently 
the Amazon Echo come out with a microwave that works in conjunction 
with your Echo, but that is still not enough. Like you are saying what 
about dishwashers, washing machines and smart refrigerators. Then, it 
comes to smart televisions and they too are not all accessible.

The National Federation of the Blind is asking the U.S. Access Board 
through legislation to put a priority on setting guidelines for home 
medical devices, then exercise equipment and then followed by home 
appliances. It sounds like a long shot but if we all Americans pull 
together we will see it happen.

So I hope you will all get on the band wagon with your local affiliate 
and if you are not part of a local affiliate, you might want to look 
for your local affiliate president on the National Federation of the 
Blind homepage, and talk with them about becoming a member.

Original message:
> Veronica,

> I don't disagree with you, but this is a starting point. Is anyone else
> crafting and introducing legislation that includes accessible medical
> devices? No. And the entire point of Washington seminar is so we can speak
> directly with reps and their aids about this legislation. Any of us could
> have attended a couple of weeks ago, and most affiliate's do provide
> financial assistance for members who want to attend, because it's not
cheap,
> but it's one of the rare times we can meet with actual reps who make all
> these decisions. We have the opportunity to say from our own mouths
directly
> to our reps why this is so important and why we need access like this. We
> can contact company after company, but until there are laws supporting us,
I
> doubt any will listen and create accessible medical tech. So, we need
> legislation to be drafted. Is this enough? No. Is the NFB and everyone
else
> doing everything possible? No. But again, it's a start, and we have to
start
> somewhere.

> Bridgit

> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of
Veronica
> Elsea via Diabetes-Talk
> Sent: Sunday, February 10, 2019 11:58 AM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] 2019 NFB Legislative Priority

> Sorry, I am not totally behind this legislation. Nobody is going to die
> waiting ten years for an accessible dish washer. This process is too slow,
> and filled with people who know nothing about our lives or the devices we
> need. Dish washers don't involve the FDA, Medicare and everyone else. I
> believe medical devices will get lost in the shuffle here because the
group
> of appliances is so large. Not like we heard from the NFB when crafting
this
> potential legislation, did we? Did I miss something? So if even the people
> supposedly speaking on our behalf don't talk to us, what can we expect
from
> legislators and access board rule making? I don't think so.
> 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
> Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Sunday, February 10, 2019 9:25 AM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: Re: [Diabetes-Talk] 2019 NFB Legislative Priority

> Yes, this is incredibly important. We've been sending out these notices in
> several places. We need support of the Federationist around the country,
the
> blind community in general and our allies to make this happen. Contact
your
> reps on capitol hill and get your family and friends to do so as well.
> Working together is how we will get this pushed forward.

> Bridgit

> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Milton
> Ota via Diabetes-Talk
> Sent: Sunday, February 10, 2019 10:02 AM
> To: diabetes-talk at nfbnet.org
> Cc: Milton Ota <mota1252 at samobile.net>
> Subject: [Diabetes-Talk] 2019 NFB Legislative Priority

> Hello All:

> Here, attached is one of the Legislative Priorities that the National
> Federation of the Blind took to Capitol Hill to present to congress. I
> suggest that as many of you get on board with this by contacting your
> congressman and asking him/her to support this bill once it drops and get
a
> bill number and assigned to a committee. The more of us diabetics let
> congress know of the seriourness of accessibility of medical home
equipment
> it will get them to get the U.S. Access Board to work on developing
> guidelines for manufacturers to design accessibility into their products.

> As many of you are aware, diabetes is one of the highest and leading
causes
> of blindness.

> If you have more questions about this legislative priority, I suggest that
> you contact someone in the Government Affairs Section in the National
Office
> of the National Federation of the Blind, (410) 659-9314.

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