The Glucose monitor situation is a disgrace to the health system. The CNIB and the Diabetic Association should be lobbying the government!!! ~~NTThat deserves more than a response. In fact, this very issue is going to form the basis of today's Furball blog post.
Who is lobbying our governments? Whose responsibility is it to cut through bureaucratic tape that holds technology back from people who need it? In the case of blind diabetics, the technology is out there. Talking meters are used everyday in the States, which are made by large and well-known pharmaceutical companies.
In our case, where we are trying to get a talking blood glucose meter so Larry can test his own blood, he's been told that "one day" there might be something. No reassurances for when that might be. The Canadian National Institute for the Blind (CNIB) and the Canadian Diabetes Association (CDA) have sympathized, even empathized. But as Larry has pointed out often - a wink is as good as a nod to a blind horse - and the horse in this case is our government.
Is it up to the CDA or the CNIB to lobby on behalf of blind people with diabetes who deserve access to technology that will help them manage their own health?
In the States, they have the National Federation for the Blind. Albeit the NFB is a rather militant organization. But will take the proverbial bull by the horns and hit the bureaucrats where it counts. They have stood up for people who have faced tremendous challenges, and have in turn made a difference for many blind people.
After speaking to a representative of the Canadian Diabetes Association a couple of weeks ago, she tried to find out from Health Canada when such a meter might be approved, and she was told by Health Canada that under no uncertain terms no such information would ever be shared.
It was at her suggestion that Larry then called the office of our Member of Parliament. When he called that office, he was told, with apparent indifference and defensiveness, that he had to understand that "many corporate dollars were involved", and it was the responsibility of Health Canada to protect this information about when such medical equipment might become available.
So who is lobbying on our behalf? I submit to the panel that that's the $64,000 question here. Certainly it would take more than a couple of calls from the Little Guys, like us.
Canadians tend to go with the flow, sit back and wait for something to happen... one day. And another way of saying that is, "Suck it up blind man, maybe your sighted wife will help you."
So if anyone has any ideas out there, we'd love to hear from you. I think we need all the help we can get.
Contributed by Jamie Naessens