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

Tue Sep 1 18:53:44 UTC 2020

This is the congresswoman that we spoke with yesterday:

U.S. Representative Jaime Herrera Beutler.

She represents the third district in the state of Washington to the US house of representatives. I have contacted my senators and representatives in the past regarding other issues and was told that unless you are a constituent of the persons area they don’t pay much attention to callsand emails. However anything is worth a try. I have also contacted this representative in the past Before Medicare would cover cGM‘ S and only got a form letter back saying she would look into the matter if a vote ever came to the floor of the house.
These people are extremely difficult to reach. Our local NFB chapter has been trying for a couple of years to get her to attend one of our meetings or do a phone conference so we could discuss some of the bills applying to blind people currently in Congress. We have had no luck. One thing everyone can do however is call the Washington DC or local offices of their representatives and senators and tell the person answering what your concerns are and they do keep lists of these. When they get lots of calls

> On One issue they do tend to take notice.
Regarding the SDP , Special diabetes program, I don’t know a lot about it but it seems to be an ongoing program of federal grant money that goes to continuous research on diabetes. However they usually just renew it for anywhere from 1 to 3 years so it is a constant battle to get it renewed. Ideally all of the diabetes related organizations would like to get it approved every five years to allow research to continue undisturbed. I do not know if it has a current congressional committee associated with it or not.  II don’t think my representative participates in in a kind of planning for this program but she did say she votes positively for passing it every time it has to be renewed. Perhaps we all need to Google it and learn more. I don’t believe it has gone without funding in the recent past but everyone always has to work hard to bring it back to the attention of people in Congress to get it voted upon in a timely manner. It has sometimes been put on the back burner when the government shuts down due to the inability ofCongress to pass a budget.
Patricia
> Sep 1, 2020, at 5:52 AM, Bernadette Jacobs via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
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> Sent from my iPhone
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>> On Sep 1, 2020, at 7:03 AM, Melanie Torrance via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
>> 
>> Great job Patricia! I’m really glad that opportunity dropped in your lap. Let’s hope something good does come out of that discussion. At a minimum, it sounds like you did a wonderful job in educating her. In the meantime, we’ll just keep on pushing. Thanks for your efforts and for letting us know.
>> Melanie
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>> Sent from Melanie's i phone
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>>>> On Sep 1, 2020, at 12:46 AM, Patricia Maddix via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
>>> 
>>> 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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>> http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bernienfb75%40gmail.com Good morning Patricia.
> 
> Is there anyway you could give us the name of this congress person??? I think others should get in touch with her and tell her their stories. Not only that, but they need to keep pounding on their own Congress representatives doors.  Warmly,
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> Bern
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