When a Person with Diabetes Shouts in the Forest

...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.

GREAT.........YOU SAID IT ALL.........


I suppose that as I get older, I am less inhibited about making myself look mean, bad or whatever. I just do not care that much. A man I knew once was upset with me for the way I was dressed at a political meeting. I did not wear a coat or tie.

What he said was that there are two times that you do not care what others think about you. When you are very young and when your career is over. I was young and he asked which I was.

I was upset and ashamed. How dare he upset me like that. Well the truth is I was neither. I simply had no respect then or now for the people who were "so much more important than I. I wore what I did because that group never did and never woudl hold my fate in their hands. In short i need not have impressed them.

As for the man who called me out, I eventually lost respect for him as well. It took longer but it was the same outcome. Just as I am proud of you for saying what you did and acting as you did. Thank you.

Rick Phillips

I have goose bumps thinking about the tension in that room! So sad in general that it is all about the numbers in health care and business, I guess health care is a business of course. If we only put people first always everyone would want to be better people! Hopefully being more accountable for their own health if they felt supported by their medical team and insurance companies. My young son told me an interesting fact last night over dinner he learned at school, American work the hardest over European counties no da the mighty bottom line do more do more you are nothing unless you produce and consume, however he said we are more religious now, hmmmm I am not religious but spiritual, maybe there may be a shift away from doing towards being, I see this as the only true way to improving the human 'being's' condition! keep moving forward, I give you lots of credit for fighting the good fight and bringing more awareness to the bean counters! many blessings, amy

Wow! Great shot from waaaaay downtown! I think the urge to profit, even by non-profit health insurance companies, permeates that industry, perhaps including "our" groups like the ADA/ JDRF, etc.

Thank you! Well done.

I HEAR!! and thanks for defending diabetics!!

One of the things I think is missing in these discussions is a distinction between "the customer" and "the patient". Frequently, those two are not the same. PWDs may be the end-users as well as the ones most affected by the positive/negative outcomes associated with the devices, but frequently we are not the ones directly paying for the technology.

Thanks for making the case that companies need to pay attention to the patient whether or not we are the direct payers.

Well, if medical costs are too high, then bargain them down. That's what a single-payer system would do. When medical devices are sky-high in cost, and doctor's fees are quite expensive and a hospital room costs thousands of dollars when a hotel room would be far cheaper, and have better amenities, something is REALLY wrong with our system. A friend of mine had a mother who was a psychiatrist in England and she was shocked by how high our doctors' salaries are. That tells us something right there!

The challenge now is to keep a productive dialog going between the patient community and the payers.

The healthcare landscape is complex with people playing many different roles. It's like that old adage about blind men describing an elephant. Each of us knows only one part of the elephant that is healthcare. In order to put that elephant to work for us, as transportation or as a beast of burden, we must understand more of the elephant than what is just before us.

Mike you make a good point about there being a difference between the patient and the payer. Natalie you make a good point about the negotiating power of the insurers. There are many good points to be made in this discussion.

We can't lose sight of the fact that for the healthcare system that we have to work everyone's needs must be served to some extent--even the need for profit.

for those of you who don't know, @sweetlyvoiced is the Twitter handle of our former lead admin hereMelissaBL. Mel is on DHF's Board of Directors, and a serious diabetes advocate. if you want to go back and check out some of the action at this event, search Twitter for the hashtag #DBminesummit

thanks for posting this corinna!