[Diabetes-Talk] My story

[debbiewunder at charter.net]

I thought perhaps sharing my story might be an example. Thanks for anyone
who also write and shares.

 

Warmly,

 

Debbie

 

How the Medical Device Nonvisual Accessibility Act Has Turned Me into an
Impassioned Advocate

By Debbie Wunder

 

Talking about laws and the Congress is intimidating, but the Medical Device
Nonvisual Accessibility Act forced me to move into the uncomfortable and
what (for me) was once the unthinkable area of public policy.

I am an insulin-dependent diabetic. I know lots of us because I serve as the
president of the Diabetes Action Network (DAN). I have been pushed out of my
comfort zone in this position, to which I was elected by my peers. Others
began trusting me to advocate on their behalf. Drugs with inaccessible
labels, medications that are difficult (or impossible) to measure, and
blood-sugar-monitoring equipment all conspire to make blind people dependent
on others. Some of these things are changing. We can now measure our insulin
and other medications, and many of those medications are now labeled
accessibly. 

Far too often, getting the technology we need is still difficult and
sometimes impossible. Monitoring blood sugar used to take a needle stick,
putting blood on a strip, and then inserting that strip into a machine. A
blind person would hope all the while that they got enough blood to be
measured, because doing so was difficult. If not, they would have to resign
themselves to the pain of going back to step one. Now, there are at least
two continuous glucose-monitoring devices that require a stick only once
every ten or fourteen days. The catch is that the readers sold for these
sensors aren't usable without vision. Thankfully, those of us with
smartphones can read the sensors to measure our blood sugar and be alerted
when our levels are dangerously low or unhealthily high. We determine how
much insulin to take (usually through shots) based on these readings.

The better way to regulate blood sugar is through the use of insulin
pumps-devices that quickly give insulin before blood sugar varies enough to
require much medication. A person must wait until blood sugar goes above 180
before injecting a shot to drop it to 120 or less. The insulin pump begins
the flow of insulin when the sugar starts rising and stops when it starts
returning to the desired level. This does a far better job of keeping blood
sugar within an acceptable range, resulting in less damage and a longer
life.

This is great technology, but not so much for blind people. No unit on the
market talks. Not one reliably beeps to indicate the increment of the level
being adjusted. Few are easy to load with insulin or to monitor when
additional insulin is required. Of the few blind people I know who use
insulin pumps, even fewer can do so independently. For many of us, the
challenges and dangers are just too great.

The problem is more than caring for ourselves. I was my mother's caretaker
for a time. She needed me to administer oxygen and many medications. Neither
of the machines she used gave a single clue as to the way a blind person
should regulate their output. Often she was unable to make these adjustments
for herself, so I gambled. Having to guess and to hope that I was right was
nerve-wracking. A single wrong guess would have put her in danger.

The Medical Device Nonvisual Accessibility Act can change all of this. When
the law mandates that devices must talk, beep, and have accessible controls,
every blind person will have more independence. But this law will change
more than just technology. It will help change the perception that blind
patients cannot take care of themselves and must consequently be taken care
of. It will change the idea that blindness equals dependence, and that
dependence means reliance on others for important medical care. The passage
of this act will attack both the visible problem of inaccessibility and the
attitudinal problem that causes inaccessibility to not only exist, but to
persist. We must take charge of our technology, rather than be subjected to
continual dependence because of it. We must do it for ourselves and for
those we love who need us. Therefore, I will take on the law, participate in
its introduction, push for its progression through the Congress, and press
as it moves from a statute to an implemented law complete with regulations
and adherence. Then I will stop talking about the need. I will start talking
about the way we use the law. We will put technology to work for us, rather
than making us victims in the beautiful age of digital machines that should
bring access to all of us the world over.

 

Debbie Wunder