By Ed Bryant
There are now 17 million diabetics in the United States. The number of people
who are both diabetic and blind (or dealing with significant sight loss) has
been estimated as high as two million. We know that for insulin dependent diabetics,
in most cases the insulin pump provides the best, tightest, and most "normal"
blood sugar control; precisely what diabetics need to maintain health and avoid
complications. For many, the insulin pump is a good thing.
We know that almost since the insulin pump was invented, several decades ago,
resourceful blind diabetics have used it. Pumps have improved, in accuracy,
reliability, and ease of use, and blind diabetics continue to use them—even
though their controls are too often sight-dependent, as are their instruction
manuals.
Several companies make insulin pumps for the United States market. Medtronic
Minimed (formerly Minimed) has the biggest share of that market. On several
occasions I've suggested the pump manufacturers make their products more adaptive
(voice synthesis, better audio prompts and warnings, more tactile controls).
I've also worked for a long time on something simpler—the preparation of
audiocassette instructions for blind pump users.
One would think, from the manufacturer's point of view, this would be no big
deal. You find a few blind diabetics who already use your pump, and use their
expertise to teach other blind users how to do the same—and incidentally,
you sell more of your pumps. Right?
Well, it didn't work that way. I communicated with Mr. Ray Hoese, of Medtronic
Minimed's Marketing Department. On the phone, he sounded interested, and asked
me for the names of blind pumpers who'd like to volunteer to help make such
a tape.
I gave him his list. That was in April of 2000.
He didn't do anything. In September of 2000, I inquired of the volunteers how
the project was going—and received the following reply. I should point
out that the writer, Donna Balaski, Executive Director of Connecticut's Board
of Education and Services for the Blind, is herself a trained medical professional,
who lost her sight to diabetes.
September 26, 2000
Dear Ed:
I spoke to Mr. Hoese twice. The first time, it was difficult to get hold of
him; and the second time, he said they were busy with some pump project, and
that I would be a good resource for the "blind pumper's audio project,"
and that when they were ready to start, he would call me. Guess what—it
has been some time, but no call. I called him once, just after convention (NFB
Annual Convention, in July of 2000), but never a return call.
I must admit to you that I am rather disappointed in Minimed, since they also
gave me a long history (a bunch of empty promises) about making the pump more
accessible, and easier to tell when the low battery alarms go off. I should
also let you know that Minimed shipped my supplies to the wrong location several
times, gave away my pump when it was in for repairs, sent me a replacement pump,
and recalled the replacement pump when they sent the wrong model without operating
instructions. I had to contact the district sales manager (who'd sold me my
pump) when it got out of hand. So, if all of my experiences are any indication
. . .
Warmest regards,
DB
Without any luck, I tried to reach Mr. Hoese. My calls were not returned, and neither did I receive any response to the following (e-mailed) letter:
October 10, 2001
Dear Ray:
Some time ago, we talked about the blind diabetics who use Minimed insulin pumps,
and their need for audiocassette instructions specifically tailored for non-sighted
use. At that time you suggested it would be helpful if blind pump users contributed
to the making of such an instructional tape.
I provided you with the names and addresses of several blind pumpers who expressed
an interest in volunteering, in helping you make such an instructional audiocassette.
Were you able to make contact with any of them? One of them, Donna Balaski,
has been in touch with me.
Please let me know. Your company builds an excellent product, and though many
blind individuals already use it, I am certain many more would follow, if the
learning process were made more accessible to them. Such a project would not
merely be a convenience to blind pump users, but could substantially help increase
your company's sales to a population that needs your product, and is fully capable
of using it safely and well.
Most sincerely,
Ed Bryant
President
Diabetes Action Network
National Federation of the Blind
I've continued trying to reach the man. No response. I find this hard to understand.
In VOICE, Vol. 15, No. 2, April 2000, I presented the stories of a number
of blind diabetics in the article: "Many Blind Diabetics Successfully Use
Insulin Pumps." In the next VOICE, Vol. 15, No. 3, July 2000, I
provided still more information, publishing the articles: "The Evolution
of Insulin Pumps," "I've Gotten Attached to my Insulin Pump,"
and "Medicare Will Pay for Insulin Pumps." But we can't do it all.
We know the insulin pump is a good idea for insulin-dependent diabetics, blind
or sighted, and we know many blind diabetics already successfully use pumps.
We've put that information in front of you, the readers, and we've put it in
front of the pump manufacturers. You can lead a horse to water, but you can't
make him drink ....
In the next VOICE OF THE DIABETIC, I will gladly print any correspondence
from Mr. Hoese, or from Medtronic Minimed, regarding this issue.