When a Person with Diabetes Shouts in the Forest…

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

…does anybody hear?

Heading home after a week in California.

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

“You know what? I don’t give a s### about your balance sheet.” That’s the moment when everything changed. In the room and in my head. Whether I realized it or not my heart was already there.

It was during the payers (health insurance companies) panel. I stood up and yelled this out to the panel.

The reps, some with a medical background, were talking about how expensive chronic illness is. As if we, people living with diabetes, didn’t know this fact. The payers panel pointed out that the accelerating cost of  healthcare is unsustainable. As if we didn’t realize this every time we look at our personal bank accounts.

“I don’t see anybody up there (on the panel), except for the lady from Arkansas (Health Exchange), talking about patients.” I could feel the blood rushing to my face. I took a deep breath. I tried to calm down.

The tension in the room had been building.

Once again the patient was being scolded by the healthcare establishment. Do you take care of your diabetes? Do you know how expensive pumps are especially if you change them every couple of years? And with ACA the rules are changing and the future is even more uncertain.

The audience sat shifting around in their seats uncomfortably. The all too common questions rattling around it their heads. Aren’t these the companies who are supposed to help us get the care we need? Don’t they understand that we want the latest therapies and medical technology, not because it’s the latest and the greatest, but because it’s our only hope for a healthier life? We want to avoid those expensive complications. Without the illusive cure, access to the most current therapies is our only hope. We are putting our trust in the medical establishment and the healthcare insurance companies.

More than that. We’re putting our very lives in their hands.

I took another deep breath in an attempt to calm down. That was the point @SweetlyVoiced spoke up to tell her story. She let the panel know that even though they say their companies want to “get patients the care they need” that’s not what we patients are experiencing.

It was called the “Patients’ Voice Summit.” Sometimes, to be heard you got to raise your voice — even if it feels uncomfortable for everybody in the room.


DISCLOSURE: The folks at the DiabetesMine invited me to attend the 2013 DiabetesMine Innovation Summit as a winner of the Patient Voices Contest. They paid for my airfare, hotel, and meals while at the summit.

The Cost of Testing

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The New York Times ran an article last week on the high cost of diabetes—not for society, but for the individual.

Protecting Yourself From the Cost of Type 2 Diabetes [ http://www.nytimes.com/2010/11/13/health/13patient.html ]
By WALECIA KONRAD
Published: November 12, 2010
Diabetes patients spend $6,000 on average a year on care, one reason only 25 percent of diabetics get the treatment they need.

Oh wow. A useful article about the financial burden of diabetes. Then I read further…
The article asks what steps can patients take to reduce the cost of diabetes? Continue reading “The Cost of Testing”

An Election Day Plea

An Election Day Plee — Improve our nation’s food policies so that everyone’s health improves right now.

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As part of American Diabetes Month the ADA has put together a suggested list of blogging topics. Today’s suggested topic is:

Tuesday, November 2 Election Day – What issues are important to you? If you could tell your representatives one thing about diabetes, what would it be?  

The most obvious plea would be for funding research for a diabetes cure. But that’s like voting for Change We Can Believe In and expecting it to happen in 18 months. It’s a recipe for disappointment. What does a cure mean anyway? To me: No meds, no machines, no special routines. Will there be a cure? I hope so. Will I see it in my lifetime? I’m not so sure.

My immediate plea would be to improve this nation’s food policies and programs. This could have an enormous positive impact on people’s lives and health right now. And not just for the millions of people with diabetes, Continue reading “An Election Day Plea”