[Diabetes-Talk] Access to insulin pumps for blind and low vision users

Tue Sep 1 21:31:24 UTC 2020

How can we get the names of the people on the health sub-committees?
Melanie

Sent from Melanie's i phone

> On Sep 1, 2020, at 5:24 PM, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> When everyone was working on getting Dexcom sorted out with Medicare, we had the names of people on the health subcommittees. Of course, they're different now. And from a congressional perspective, the problem is that medical devices have no accessibility requirement under the ADA so it's tough to get action. I visited a bunch of town hall meetings here in California when Congress was working on the affordable care act, using that platform to also educate about advancing technology, the need to fund its use and to put in accessibility requirements. Not only did I give verbal presentations, but I went and spoke to them after the meeting and left them with a written copy of my presentation. On some occasions, the meeting got so heated that I got shouted down by people who said they didn't want to pay to help people who caused their own disease. You can guess where my education attempt went on that score. And given how often the house turns over, we need to stay on top of committee assignments and send them something every two years, for starters. Just keep pounding on those doors. <grin> 
> So good for you Patricia, for grabbing the opportunity that appeared. In 2010 and 2011 I actually applied to be a speaker at the American association of diabetes educators conferences. But they didn't select me. <whine.> But I sure did take advantage of my time in the exhibit hall to spread the word there. And now I'm going to respond to a survey request from the Omnipod people about what their users want in the future. Watch me! <grin.>
> But strength in numbers is certainly a good starting point. Thanks.
> 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 Michael Barber via Diabetes-Talk
> Sent: Tuesday, September 01, 2020 1:03 PM
> To: 'Diabetes Talk for the Blind'
> Cc: m.barber817 at gmail.com
> Subject: Re: [Diabetes-Talk] Access to insulin pumps for blind and low vision users
> 
> Very nice job, Patricia.  Please keep in touch with this Congresswoman and keep us on her radar scope.
> 
> Michael
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Tuesday, September 1, 2020 9:59 AM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Bridgit Kuenning-Pollpeter <bkpollpeter at gmail.com>
> Subject: Re: [Diabetes-Talk] Access to insulin pumps for blind and low vision users
> 
> Patricia,
> 
> This is amazing. What a wonderful opportunity. Thanks for doing this and getting the word out there about blind diabetics.
> 
> Bridgit
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Patricia Maddix via Diabetes-Talk
> Sent: Monday, August 31, 2020 11:45 PM
> To: Diabetes-Talk at nfbnet.org
> Cc: Patricia Maddix <pmaddix at comcast.net>
> Subject: [Diabetes-Talk] Access to insulin pumps for blind and low vision users
> 
> I was recently asked by the advocacy chairman of the Oregon and Southwest Washington chapter of JDRF to take part in a 30 minute phone call with The representative from our district to the United States house of representatives.  I was asked to tell my story about living with diabetes which I have done for 59 years and then we also discussed the need to get extended funding for the Special diabetes program that the government has been funding for years but requires renewal frequently and runs out in March, the high cost of insulin, and any possible financial assistance for nonprofit organizations that have been devastated during the pandemic. The Congress woman was extremely open and supportive of our causes and will support Special diabetes program as well as trying to get the cost of insulin reduced. She supports the effort of buying insulin from Canada which is perfectly safe but where the cost of insulin is 1/3 to half of what it is in this country. In my presentation I also drew her attention to the fact that the newer insulin pumps will only have touchscreen capabilities and will not be accessible to the blind. She was absolutely horrified to hear this She of course uses all kinds of technology and states that it must be a fairly simple thing to either get an insulin pump to have talking capabilities or to have an app developed so that the pump could be controlled from a smart phone or similar device. She was also amazed to hear that for example the med Tronic pump cannot be upgraded or updated like the new tandem pumps When its new software becomes available and you’re then stuck with that pump for five years until you can get a newer model. She stated that it didn’t seem like the pump industry was keeping up with the direction that most other technology is going. I certainly doubt that there is really anything she can do about these issues but she meets and talks to a lot of powerful people and she may from time to time mentioned that she talk to our group and learn these facts and get other people with influence interested in our plight.  her term of office is up this year and I certainly hope she is able to get reelected in November but she is running a really hot race with the other person that is nominated.  This situation just dropped into my lap and I was so delighted and wish that we could get a lot more exposure like this and someday it might hit the media.
> Patricia
> 
> Sent from my iPhone
> 
> Sent from my iPhone
> 
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