by Debbie Wunder
From the Editor: Debbie is the president of the Diabetes Action Network, and her commitment to helping diabetics realize they can manage their diabetes is second to none. Her confidence in pressuring the Congress of the United States is a work in progress, but she has it on her radar as she clearly says here. We need the Medical Device Nonvisual Accessibility Act, and she’s going to give her all to see we get it:
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.