[Diabetes-Talk] 2019 NFB Legislative Priority
Eileen Scrivani
etscrivani at verizon.net
Mon Feb 11 00:27:19 UTC 2019
We will always have a need for a talking glucose meter because isn’t it true that even if using a CGM people still need to test their BG levels with a finger stick for both calibrating & confirming what the CGm tells you? And, also CGM’s have limitations as to how high they will report a BG number and we as blind diabetics still need to know what that number is in order to correct it.
As for insulin pens I think they will also remain because there are many type 2’s that use small amounts of insulin in which a pump would be over-kill. In addition, as a pump user I still keep pens on hand for instances when something has gone awry with the pump’s delivery and I need to quickly get numbers back down.
Eileen
Eileen From: Bridgit Kuenning-Pollpeter via Diabetes-Talk
Sent: Sunday, February 10, 2019 7:09 PM
To: 'Diabetes Talk for the Blind'
Cc: Bridgit Kuenning-Pollpeter
Subject: Re: [Diabetes-Talk] 2019 NFB Legislative Priority
Sandy,
First, yes, heard of the goings on in Iowa and glad the code of conduct was an official thing by then.
Second, I don't disagree with anything you say here at all. But I will say that those diabetics using insulin pumps is still not greater than those still injecting. So, once close-looped systems are on the market, I don't think the majority of diabetics will be using them just yet. I don't think pens and meters will be phased out just yet. I know several non-blind diabetics, and only one uses an insulin pump. The only other pump users I know are blind, oddly enough. Most people I know don't trust tech to help manage their diabetes. This includes CGMs. So as popular as this stuff is, I don't the majority of diabetics are quite ready to jump on board. I have been trying to convince my friend to start using Dexcom; he's been diabetic for 50 years. He's certain a CGM will do nothing more than what his Prodigy can do, despite my personal experience with it. And he's a research scientist, and there's no convincing him tech can help.
Nonetheless, it doesn’t' mean we stop fighting for accessible tech. My endo has been talking up closed loop systems for a while, but I keep explaining that if accessibility isn't a consideration, it won't work for me. She's positive accessible pumps will be available soon, but she has no clue. No one is even thinking about it, let alone working on it. What is revolutionizing diabetes care is leaving a group of us out in the cold, and as pointed out here, diabetes is one of the leading causes of blindness, so these companies better pay attention.
And on that note, so should the NFB. This is a crucial, vital issue that shouldn't be ignored. I understand the need to ensure students and those of us with jobs have accessibility, but what's the point if my health isnt' where it should be?
Bridgit
-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of sandi via Diabetes-Talk
Sent: Sunday, February 10, 2019 4:28 PM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: sandi <sjryan2 at gmail.com>
Subject: Re: [Diabetes-Talk] 2019 NFB Legislative Priority
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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