Saturday, September 24, 2016

Our Wedding Engagement Newspaper


Happy Wedding Anniversary, Suzi!


As I do every year, I sit back on this special day and re-read the newspaper I created to propose back in March 2003. This full eight-page broadsheet is the one I spent about three months creating many months in advance.

It was quite the task, writing my own stories, editing and designing, selling ads to pay for the whole thing, and recruiting a roll of writers made up of family and friends. All of them keeping the upcoming marriage proposal a secret, of course!

I still remember staying out late at night, telling you they were late nights in my real paycheck-providing newsroom job when in fact they were spent at my old college newspaper stomping grounds putting this paper together.

It was tough, but it all paid off.

This is really a place to post the full newspaper, to keep it alive in digital form online. Sure, I have a couple dozen copies left over from the 1,000 created for that night and beyond. And every one of those eight pages has been framed to display in our home, to display for us to reflect on and for all those who might want to look at them.

Our newspaper hits the 21st century blogosphere, for the entire online universe to see as it may want to (likely clicking on the images themselves, to make them show up in readable sizes...)

The Daily News, Engagement Edition. Created for the proposal event on March 15, 2003.

Front Page

Page 2

Link to Front Page Proposal story. And the Page 2 jump.
Link to Speech story. And Page 2 jump.
How'd we catch each others' eye? Here's a Christmas 2002 account of those initial impressions...
Link to the Page 2 story on Sustaining Surprise.

Page 3

Inside Spread, Pages 4-5

Written by one of Mike's good friends from high school. (Click for bigger image)


Page 6
 Link to In the Beginning, a story of Us on Page 6.
Link to Page 6 story 9/11 emails between Mike and Suzi

Page 7
Back Page (The Ad Page)


Happy Anniversary, my love.

Our story continues, and I'm honored to have the chance to live it with you.

Tuesday, September 20, 2016

An Aching Tooth and Diabetes Stigma

I sat silent there in the dental chair, listening to the new dentist ask an array of basic questions about dental history and overall health.

Of course, diabetes came up.

Earlier, in the waiting room, there were the new patient forms to fill out everything about me. All the health and medication issues, and that typical checkbox for "diabetes."

I checked that box, but wrote in "type 1" on the line almost by instinct. I questioned that even while writing it, because I wondered if it somehow implied I was saying, "Not Type 2, or that kind of diabetes..."

Was I fueling misconception? Was I feeding into the daunting cloud of diabetes stigma that exists in the world?

Deciding it was over-thinking, I ignored my concern and wrote it on the form. And then went about completing the rest of the paperwork before seeing this new dentist for the first time.

Nice enough lady, and I was eager to get to the meat and potatoes of why I was there in the dentist chair: Discomfort in a tooth that concerned me.

As the routine goes, she went through the paperwork quickly and read off some of the health and medical related points I'd filled out. That's where she came to my checked box about diabetes.

"Oh, and diabetes... type 1, so that means you've had it since you were a child and it's OK?"

Red flags went up in my brain, but I hesitated.

"Yes, I was diagnosed at age 5, but you can be diagnosed with type 1 at any age!"

"Type 2s are being diagnosed as children more commonly, too!"

"Why the hell would it be OK at any age?!?!"

"It's not really referred to as juvenile diabetes anymore, because most of us with T1D are adults and more are being diagnosed as adults."

"What are you implying about those diagnosed as adults, or those with type 2 or gestational... no one chooses diabetes!"

But, I didn't say any of that.

I recalled writing "Type 1 diabetes" on the form in the first place, and how I'd ignored my gut instincts to just leave it as "diabetes" because distinguishing the types didn't matter at this moment.

Yep, I had pretty much brought this on.

Then I also remembered: My tooth hurt.

And that's why I was there.

So, I politely agreed with her, confirming that I was diagnosed as a young kid at age 5.

And I didn't say anything. I chose not to advocate, for whatever it might be worth.

Now a week later, I feel guilty for not raising my voice and advocating to that Healthcare Provider when I had the chance. I may not see this dentist again for a variety of reasons, but that just means I lost the chance to clarify something about diabetes that she may not have understood.

Especially in light of the latest research from the big EASD conference in Germany, in which a study showed that half of those with T1D are older than 30 years old. It's not just a kid disease, and the use of the word "juvenile" is outdated and inaccurate in many cases.

All of that makes me feel more at fault for not raising my voice to educate this dentist, especially when these folks are on the front lines in healthcare and can actually diagnose diabetes and help keep an eye (or tooth?) on D-management.

By not speaking up, I am a part of the problem in maintaining the status quo that's so saturated with stigma and misconception.

The Diabetes Community has an aching tooth in how it self-identifies and responds to the public, and that stigma is not far off from being that painful tooth that's in need of a root canal.

In retrospect, my silence feels like I just flooded the tooth with ice cold water and am now feeling the painful sensation that comes from allowing someone to continue not knowing about diabetes.

No, I don't always have to advocate in these types of situations. But then, I can't be surprised when someone doesn't know how things really are about diabetes.

And my tooth still hurts.

Thursday, September 15, 2016

Which Don To Respect?


Remember how I used to occasionally reference the "Don of Rage Bolusing?"

You know, that was mostly a term of endearment for my insulin pump. Even though sometimes, I used it to describe myself from time to time. In those times when I saw stubborn High blood sugars that wouldn't budget with normal correction doses, via my insulin pump.

So, I would click a couple pump buttons and dose a wave of insulin... a rage bolus, as it were (hat tip to Kerri). Since I liked to be silly and named my insulin pump "The Don," thanks to my love for the Godfather movies and TV Show NCIS where Mark Harmon plays the character Gibbs.

Yeah, it was all in good fun. A way keep my sanity while keeping up with this wondrously exciting life with diabetes jam-packed with device juggling, management tasks and mental gymnastics.

Well buh-bye, Don of Rage Bolusing.

I've been on a #PumpHiatus for the past four months. There was never a certain date, and as of now I'm not 100% sure if and when I might go back to my insulin pump. This Multiple Daily Injections (MDI) system using Novolog pens, Afrezza inhaled insulin, and a twice-a-day dose of long-acting basal is working fine for me.



With that, I've hung up my hat (at least temporarily) as the "Don of Rage Bolusing"...

Instead, it's now: 

"The Don of Rage Dosing" 

or maybe, too:

"The Don of Rage Inhaling"

(Hat Tip for my Type Awesome Spouse for noting this distinction.)

We'll see what happens next, and which Don ultimately wins out.

Either way, there must be respect.

In the meantime, I'm kissing the ring and trying to control the rage as much as possible. While respecting that fact that it's my diabetes calling the shots and "settling all family business" relating to my blood sugars, more than anything...



Thursday, August 25, 2016

Driving A Car on Dangerous, Worn Tires

Hello again. Blue Care Network.

It's me again. The guy you've added to "The List" on potential rabble-rousers, those you sound warning bells on whenever their name pops up in the call que or a written communication comes in. Yep, that guy.

We've done this dance before, you and I. Remember?

Letter to My Insurance Company: I'd Rather Not Die Today

If My Diabetes Devices Were Parts of a Car...

My inhaled insulin Rx request that you initially denied, and then changed your mind on. The other battles that I didn't care to continue, because even though it was a question of improving my health, it wasn't worth my sanity.

Yet amazingly, you don't seem to learn the lesson. Even though it's clear you have a pattern of "deny first" and thoughtfully-consider the request later on appeal, the cycle continues.

Alert your supervisors, because you're all in for another round.

A few weeks ago, my doctor's office called in a prescription for a new type of basal insulin. We had met earlier that day in his office, discussed my diabetes data and all of the medications I've been using. He and I both agreed, after analyzing my data and determining that my current and past insulins were not working effectively to achieve the desired outcomes that a change was in order.

We decided that Tresiba was unique, doing something that other insulins did not. It had good customer feedback from those who've used it, and the science shows it lasts 42 hours instead of how long the competing Lantus and Levemir last (sometimes not even the full 24 hours they are labeled for). Because of my specific situation, my doctor agreed this would have a better chance of lowering my glucose variability, stopping those dangerous Lows that I have been experiencing, and even improving my A1C more than we've been able to accomplish to date.

I was excited to find a medication that might actually help keep me healthier and limit some of the scary hypoglycemia and hyperglycemia I have been seeing.

Unfortunately, Blue Care Netowrk denied that prescription claim.

In your denial letter, you specifically stated:
"Coverage is provided in situations where the member has failed to achieve adequate blood glucose control with use of both Lantus AND Levemir for at least three months each. Coverage cannot be authorized at this time. The member must still try and fail Levemir for at least three months to meet coverage criteria."
Holy, hell. Did you seriously tell me to "try and fail" for an effective 6 months before starting a medication that my physician and I both agree has the likelihood to improve my health????

Wow.

That is very concerning language, on so many fronts. It's like you telling me to continue drinking toxic water before you'll give me access to bottled water. "Hey, data shows your current water is not good for you, but we want you to use that for three months. AND THEN, go next door to the house that data shows also has less-than-ideal water, and use that for three months. ONLY THEN, will we make sure you have access to clean bottled water that's shipped in from outside the city."

Seriously, Blue Care Network. That is what your official denial letter says to me.

Here, let me put this in terms you may be able to better understand. Maybe a car analogy will help you better grasp the foolishness of your decision-making here:

If My Diabetes Management Was a Car... 

I currently own a car, and you've paid for the wheels and gas and some of the engine work that's been done on this during the past 8 months.

However, when I drive this car on the local side-streets or expressways, it's a bumpy ride. My car shudders, sometimes resulting in my loss of control of steering and acceleration.

In consulting with my expert mechanic, who examined the body of my car and spent time looking under the hood, he advised that I needed 4 new tires.

Realizing that this is a serious problem that endangers not only myself but other people on the road, I've decided to address this issue and buy new tires. That is what I've asked for you to help on, since you're in the business of helping your insured customers achieve better outcomes.

Instead, you questioned my mechanic's orders. You relied on the textbook answer that was written years before my current car was even manufactured on the line, and was written based on outdated auto mechanics.

Your logic: I should continue driving on what I have now, for at least three months. And if that doesn't work, I should not listen to my mechanic and I should rotate the tires in hopes they'll magically heal themselves and allow for a smoother ride. By your reasoning, that tire rotation is a "clinically equivalent" option to buying new tires.

"Try and fail," is the language you used in a denial letter. You also talked about cost management and how this is a basis for your decision-making.

In the meantime, I wonder what happens if my car stutters and stops on a busy interstate? If I am seriously injured in an auto accident as a result of my car not functioning properly? If I am unable to work and be a productive member of society, as a result of my car malfunctioning because you denied to fix it based on the expertise of a mechanical expert who has actually looked at my car and warned of these potential issues?

I doubt you'd be quick to cover those above scenarios, probably because of the same "cost containment" rationale. And I wouldn't be surprised if you offered up language in denying those expensive claims, along the lines of "You should've fixed this before it became dangerous."

No, Blue Care Network. You are the one making dangerous decisions here.

You are forcing me to drive down the road on dangerous, worn tires. I'm riding on danger, because you won't do what you're supposed to in helping me afford the best treatment that will keep me safe.

My physician has offered medical advice based on my patient data, and we have determined the best course of action. We understand that you're concerned about containing costs, as we all are. But we also know that this particular Tresiba Rx is the best option, and it's different than anything else out there. That's why we have asked you to cover this medication, something that isn't "clinical equivalent" to anything else but has the potential to keep me safe and healthy.

We have already started the appeals process for this particular prescription, and I trust based on past experiences with BCN that this will be overturned and approved sooner, rather than later. For example:
  • The nurse who who told me that (after I had complained about my Dexcom CGM sensors being denied and gotten Huffington Post coverage on that), she was instructed to take a second look at my Dexcom CGM supplies, which had been denied. And learned upon re-examination that "Oh, you were already using this device, so that's now been approved."
  • That you approved my Dexcom CGM sensors in February, but in May you denied the Receiver and Transmitter that is needed to operate this CGM system. As I wrote before: If My Diabetes Devices Were Car Parts, it was like you OK'd the 4 wheels and steering wheel, but not the body of the car needed to use those other parts.
  • Within an hour of appealing a denial related to my Lantus insulin (you know, the one you're now insisting I "try and fail," my Rx was approved. 
  • You had denied my Humalog originally because I needed to first try the competing fast-acting insulin Novolog. As I'd never used Novolog before, I opted to not fight on this and to try that insulin. Yet, amazingly, I learned that after I'd called my local pharmacy to fill the Novolog, you went ahead and approved the Humalog insulin anyhow -- despite how I had not met the "clinical criteria" you had told me to follow.
  • In one of those above situations where I was fighting BCN and appealing a denial, two of the BCN representatives I spoke with on the phone specifically told me that they weren't permitted to give me information about my own medical care or the decision-making on my claims, because I was not the prescribing doctor.... One of those reps had the mind to throw HIPAA privacy at me as a reason behind this BCN policy... (Yes, really!) A few more phone calls up the chain of command resolved this, with apologies from a supervisor.
All of this proves to me that your decision-making process is, by design, aimed at denials and making it more difficult for patients and providers to obtain coverage.

No, I don't think insurance companies should be in the practice of blindly approving anything and everything we ask for. Yes, there does need to be some oversight and cost-analysis weaved into this review process. However, even when physicians follow your clinical criteria to the letter, and submit documentation showing so, you have a policy to deny first.

My hope is to highlight the arbitrary nature of your policies and decision-making, to help you understand that they simply don't make sense and go against both common sense and medical standards.

To be clear, I'm not worried about myself, and obtaining this particular medication. My concern is more about the pattern of denial your insurance company seems to have. I'm troubled by that trend, and worried about other patients. Those who don't know that they don't have to take No for an answer, but they have options to appeal.

My own doctor has told me of situations where he has Rx'd particular items, only to find out at a patient's next visit that they ended up not ever using it because of an insurance denial. They either decided they weren't able to get coverage for that medication, or they weren't interested in appealing for what they needed. I can't even imagine how many doctors out there have a blanket policy within their practices of not appealing, simply because they don't have the time or resources to devote to that process.

That's wrong, in my opinion. And I believe it goes against the very definition of what you profess to be all about, in your mission statement on healthcare coverage for people who need it.

With that, I leave you my ask:

Please, listen to the doctors who are writing these prescriptions. They know what they're talking about, as physicians, and we trust their medical advice.

Tuesday, June 14, 2016

Thoughts on #DiabetesAccessMatters From the Airport

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Here I sit, in the New Orleans airport waiting for my flight back home following the ADA’s biggest diabetes meeting of the year.

I've got some personal thoughts to share.

This isn't a professional recap of anything, just a line to what's going through my head and heart here at the moment. More professional, balanced writing and analysis will occur elsewhere, in due time. 

My mind is swimming with so much information and there's so much to process on so many fronts. While this ADA event leaves me hopeful and inspired in so many ways about the state of things, it also leaves me a bit unsettled and sad.

In many ways, I feel powerless to move the needle on change when it comes to making sure people have access to the tech and treatments and tools they want to use.

#DiabetesAccessMatters was a big topic on everyone’s mind at ADA.

No doubt, the United Healthcare and Medtronic partnership in early May was a hot-button issue that got attention and drew broad discussion going beyond just those two companies.  It came up so many times, officially and unofficially. Key leaders and groups are working on this, having discussions with MedT and other industry players. They’re talking with insurance companies. They’re looking at how the D-Community can coordinate and do more to persuade payers not to limit our choice and access.

Many of us who were there sounded like a broken record, expressing our frustration and disappointment – talking to tech company folk and doctors and regulators and so on to make sure they know how we feel.

They do.

I’m happy about that.

Everyone's trying to figure out "What's Next?" and what we do, but there's nothing black and white about any of this. It's all so damn complicated and has a lot of moving parts. So much is dictated by unintended consequenes of federal and state laws, how businesses are responding to the whole healthcare game, how digital health data can be used most effectively to guide decision-making and help get people heather. It’s not easy to figure out this stuff.

What gives me hope is that some of the brightest minds that I've ever seen in diabetes, healthcare, policy-change and frankly the world are on this.

And then I go online and see people in this Diabetes Community saying “Oh, advocates aren’t advocating on #DiabetesAccessMatters. It must not matter to them.”

Since it's now been just over a single month since the UHC-MedT partnership came to light (thanks to a smaller competing company's red-flagging), the fact that no concrete answers have been publicly outlined and nothing's "fixed" must mean this just got swept under the rug. 

Fuck.

Since I am at the airport right now, I kind of want to go put all my Internet-connected onto a runway and just have them run over, to get away from that crap. Seriously? How goddamn naïve. 

Don't misunderstand: I'm not mad about people being mad about things not moving faster. I wish they did. Of course. I am not mad about people voicing their opinions. That's what #1 is all about. What gets under my skin is those who decide to start questioning advocacy, saying nothing is happening or it's just forgotten about because it hasn't been shared on social media or anywhere else for that matter. 

Shit is happening, and it’s happening by those who ALSO don’t know what the fuck to do about this or how to change it. But they’re asking questions, working to coordinate effectively, and make a lasting change in this area that goes beyond diabetes.

And with that, it’s where my heart shifts a bit…

Because despite all that’s happening behind the scenes, I feel so helpless. That with all this talk of coordination and change, we’re not able to make anything happen. It’s not us calling the shots, it’s the payers. Everything in diabetes tech and treatment these days is about making sure PWDs can use these tools correctly and effectively, achieving better outcomes and getting to a good healthy quality of life.

I've seen some friends express similar feelings (as I'm sure others have), and I have to echo that I'm feeling a lot of the same helplessness about this -- even though it's only been a month or so and despite all the conversation that is happening.

That desire for data-driven outcomes is what’s pushing these UHC-MedT style decisions forward, and those are going to continue because that’s the reality of the world now (at least the first world, where people can afford this shit).

Many globally can’t and that’s a whole other – somewhat related? – topic on access in itself, and it all makes my mind just start drowning again.

Insulin costs way too fucking much.

Devices do, too.

People at insurance companies who aren’t on my medical care team are second/third/quadruple guessing my doctor-ordered treatments. They’re saying I only have access to what they think will do better for me, based on dollar signs instead of my own health and choice and medical guidance.

They want my A1C lower, but want to limit the amount of test strips I use each day – thereby screwing with my chances of lowering A1C .

Assuming I live long enough to get to Medicare, my access and choice is limited even more just like all those who can’t get certain pumps, CGMs, best medicines or enough supplies now. But hey, that’s OK… they’re hedging bets that we’ll just die soon anyhow, so WTF does it even matter?

Anyhow… ranting aside.

I will continue to do what I can from my little corner booth.

If that means not being a customer of these companies that are pulling strings and not standing up for full choice and access across the board, so be it. If they don’t get that they play in a sandbox and must nurture the ecosystem in order to best make people healthy, then they don’t get my business. And they get my condemnation.

I will tell anyone I know about how I feel about this. That includes diabetes advocacy orgs that are collecting our stories, my elected leaders, insurance policy-makers, and my medical care team. I’ll encourage the company I work for, as well as others that are and will continue to be in the insurance-shopping business, not to choose UHC or other insurers who blatantly adopt these money-driven policies.

It may not be much and it may not change the game, but it makes me feel like I’ve accomplished something. And maybe that’s all I’ll be able to do for now, before the eventual day when I won’t have a choice about making a choice and will have to go silently along with whatever’s forced upon me.

And now, I have 10 minutes to board the plane. Maybe the sky-high view between Louisiana and Michigan will bring a little wisdom, or something (probably not, as I'm flying Spirit that makes me pay more for everything)...

Son of a bitch.

Clouds may be all to see, anyhow.