[Diabetes-talk] talking insulin pump remote: Pump Mate

Sat Apr 10 15:13:58 UTC 2010

Chanelle:

You ask reasoned questions and they deserve reasoned answers.

First, Access Solutions is rightly desperate to get Medtronics to even give 
them the time of day, let alone make a commitment to assist in 
development/manufacturing costs and assuming the burden of legal liability. 
In fact, in a very minimal sense, as you say, the device is already being 
successfully used by one blind diabetic although, in fairness, we only have 
his word for it, not that of his endo or CDE. And please don't construe this 
last proviso as saying he's a liar. I'm just stating facts with no judgment 
involved.

Be that as it may, Access Solutions' problem is the same one as the late 
David Anspach encountered and, in truth, anyone encounters when dealing with 
these large medical corporations: trying to figure out whom to contact that 
cares *and* has sufficient influence to translate goodwill into action. This 
is the same problem we, the blindness organizations (and I mean both ACB and 
NFB here) face: getting to the real string-pullers at Medtronics and giving 
them sufficiently valid reasons (in terms of their stockholders) to assist 
Access Solutions.

If I may be a bit cynical for a moment, it would help if Medtronics' CEO had 
a blind parent or child. That usually gets action (think the Optacon and its 
inventor, Dr. Linville, who had a blind daughter Candy). Since we don't know 
this and it would be crass in the extreme to make such an inquiry, we must 
think of other methods.

David Anspach dealt with his local sales reps who, he says, were very 
enthusiastic about the possibility of building accessibility features into 
Medtronics' pumps (and he wasn't necessarily even speaking of making them 
talk although he did mention the subject). But that's as far as it went. He 
(Mr. Anspach) never heard from anyone higher-up in the company nor did the 
sales reps.

What tends to happen (and this happens with insulin pen manufacturers whom 
I've contacted about getting those infernal warnings about using pens by the 
visually impaired without sighted supervision) is that we, both blind 
individuals and organizations of the blind, get shunted off to the 
companies' PR departments and it's like punching a feather pillow -- lots of 
agreement and promises to listen and then nothing happens.

I'm attaching a text version of the Technology Bill of Rights for the Blind, 
H.R. 4533. AS you will see from the bill, one of the classes of covered 
devices (along with kiosks at airports, point-of-sale machines, home 
electronics and consumer appliances such as dishwashers, stoves and the 
like) are "consumer devices". A commission is set up by the bill that would 
promulgate standards of accessibility for these devices and these would have 
to be implemented by all consumer device manufacturers by a mandated 
deadline. WE of NFB would argue strenuously before the standards commission 
that *all* diabetic devices intended for consumers would have to be made 
accessible ipso facto, right out of the box.

You ask if it would not be better to get Medtronics willing support. You bet 
your sweet life it would! But corporation law in this country (or everywhere 
else, to my knowledge) doesn't mandate that corporations hue to standards of 
morality other than prohibiting things like peculation and fraud. So unless 
someone at a corporation has a compelling moral reason to produce devices 
"because it's right", litigation is about the only way to get things done.

Before members of ACB remind me that Major League Baseball and some retail 
establishments have engaged in what is called "structured negotiation" with 
ACB to implement accessibility in their point-of-sale machines or web sites, 
I happily acknowledge this and commend ACB for its action. However, I 
maintain that without the "big stick" in the background, these corporations 
wouldn't have been nearly as anxious to work toward accessibility. Same goes 
for Apple with VoiceOver and its accessible iPhone.

This takes nothing away from Apple or MLB or Safeway or any of the other 
firms that are working with Lainey Feingold et al. It's just my educated 
hunch. And it's what a Sony rep once told one of our (NFB's) representatives 
on a trip to the far East; he (the Sony rep) claimed his company wouldn't do 
anything unless it were sued.

But litigation isn't the only way. If we were to cause HR-4533 to get enough 
votes to become law, we would have the law behind us in pointing out the 
facts of life to recalcitrant medical firms. One starts the process of a 
bill becoming law by calling up one's representative (this is to the Federal 
Congress) and urging him/her to cosponsor HR-4533 and getting one's friends, 
colleagues, social acquaintances etc. etc. also to call. And you'd be 
surprised how well this often actually works. Both ACB and NFB use this 
strategy. Yu can find yur representative by going to http://www.house.gov 
and using the combo boxs to select your state and district.

With enough cosponsors (I forget the exact number), the bills's sponsor has 
enough leverage to get a committee hearing on the bill and it would be easy 
to get enough blind folks (diabetic or not) to testify to occupy Congress 
for a year!

It's worth a try. And lest you think that I'm just trying to push a NFB 
agenda, please remember that this was/is the ACB strategy to get its "Video 
Description Restoration Act" or whatever it's called now passed.

WE, the blind, are a small minority within society and blind persons who 
have diabetes are an even smaller number (and yes, I know, diabetes is the 
leading cause of blindness/visual impairment but those folks have to *admit* 
they're blind or visually impaired before they care much about 
accessibility). So although petitions (both on-line and off-line) are all 
the rage these days, they, like economic boycotts, only work if there are a 
sufficient number of people in the pressure group to make folks sit up and 
take notice.

As a practical example, remember the bus boycott in Montgomery, Alabama --  
the one where Rosa Parks wouldn't sit at the back of the bus? The 
African-americans won that one because most of the bus riders were black. 
Had blind bus-riders boycotted, I suspect there would have been merely a big 
yawn.

But we do have power if we exercise it intelligently.

I know this is long but perhaps list participants may thereby get a bit 
better idea of what my experience tells me works.

Mike Freeman

----- Original Message ----- 
From: "Chanelle Hill" <chanellemh at gmail.com>
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Sent: Saturday, April 10, 2010 6:59 AM
Subject: Re: [Diabetes-talk] talking insulin pump remote: Pump Mate

> Dear Mike,
> Don't worry; I am not going to flame you. I don't know if the pump-mate is 
> ready for prime time as you say. I just happened to stumble upon the 
> website yesterday, got really excited, contacted the developers, and 
> posted to the list. Maybe I am jumping ahead of things, but the developers 
> encouraged me to contact Minimed and to inform others.
> You may be right that we are small in number and may not be heeded by 
> Minimed; however, it only takes a few minutes to write Medtronic or call. 
> If we let friends, family, and healthcare workers know, they may even be 
> willing to contact Medtronic on our behalf if they have had knowledge of 
> what it is like for someone who is blind to use an insulin pump.
> I am ignorant concerning the technology bill of rights. How exactly will 
> this help to make insulin pumps accessible? Would Medtronic and other 
> companies be ordered to make their products accessible once the bill is 
> passed? Would it not be better to get Medtronic's willing compliance if we 
> ever could? If this bill is the answer, how do we get our representatives 
> to pass it? In terms of the general population, we are also a small part.
> I am not trying to criticize you. Any information you may have for me to 
> educate myself about the Technology Bill of Rights or how it would pertain 
> to diabetes would be greatly appreciated.
>
> Chanelle
> ----- Original Message ----- 
> From: "Mike Freeman" <k7uij at panix.com>
> To: <diabetes-talk at nfbnet.org>
> Sent: Friday, April 09, 2010 9:32 PM
> Subject: Re: [Diabetes-talk] talking insulin pump remote: Pump Mate
>
>
>> Chanelle:
>>
>> I am in contact with Access Solutions concerning this pump remote but 
>> didn't think this was ready for prime time yet. I have informed NFB 
>> President Dr. Marc Maurer of this possibility.
>>
>> I am virtually certain that I will get flamed for what I shall say next 
>> and I mean no disrespect to you in saying it. But in my opinion, we can 
>> write to Medtronics MiniMed till we're blue in the face and absolutely 
>> nothing will come of it. Why? Because there aren't enough of us to make 
>> it worthwhile for the company to make the investment to manufacture the 
>> pump remote and secure FDA 510(k) cergification for it which would mean 
>> that the company would have to certify the remote's accuracy and would 
>> take on the risk of liability for flaws.
>>
>> However, this is not the end of the road. I have spoken with John Pare, 
>> Director of NFB Strategic Initiatives and he believes that diabetes 
>> equipment including BG meters and insulin pumps would be covered (the 
>> Technology Bill of Rights for the Blind, HR-4533, introduced into 
>> Congress this year. So we need to work like mad to get our 
>> representatives to sign on to this legislation as cosponsors.
>>
>> Mike Freeman, President
>> Diabetes Action Network
>> National Federation of the Blind
>>
>>
>> ----- Original Message -----
>> From: "Chanelle Hill" <chanellemh at gmail.com>
>> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
>> Date: Friday, Apr 9, 2010 12:27:55
>> Subject: [Diabetes-talk] talking insulin pump remote: Pump Mate
>>
>>>
>>>
>>> Dear list,
>>> I don't know if this information has been posted yet, but it is super 
>>> excited. A talking remote is being made for the insulin pump. The remote 
>>> is being made by a company called Access Solutions www.axsol.com. I just 
>>> spoke with James Kubel, the engineer who created the Pump Mate. He has 
>>> had diabetes for 40 years and was frustrated by the lack of a talking 
>>> insulin pump and the fact that there was no interest in producing one by 
>>> insulin pump companies. The website for the Pump Mate is 
>>> www.pump-mate.com
>>> James is trying to get Medtronic Minimed's cooperation and support in 
>>> developing and producing the Pump Mate. It would be great if those who 
>>> are interested could contact Minimed to express interest in the pump 
>>> mate and desire that Minimed would help to market and produce it.
>>> With the Pump Mate, it is possible to program basal rates, use the Bolis 
>>> Wizzard, and hear test results from the meters that Minimed has 
>>> specifically designed to transfer data to and from the insulin pump. 
>>> This has amazing potential since the Pump Mate could someday be used in 
>>> conjunction with the continuous glucose monitoring system.
>>> I have pasted James's contact information below, and I am sending him a 
>>> carbon copy of this message in case he would like to join the list or 
>>> provide feedback.
>>>
>>> Access Solutions
>>> james at axsol.com
>>> sales: (916) 481-3559
>>>
>>> Chanelle
>>> _______________________________________________
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>>
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>
>
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