Sunday, September 10, 2017

Speaking Up on the Insulin Pricing Crisis

As I've shared, I took part in a protest recently in front of the Eli Lilly headquarters in Indianapolis, aimed at drawing more attention to the serious issue of insulin pricing in America.

This was organized by the UK-based group T1international, and being a part of this was a personal one. I was wearing my personal advocacy hat here.

Roughly about three dozen of us came out to this event on Sept. 9, what will be the first in a series focused on insulin manufacturers (and hopefully others such as Pharmacy Benefit Managers that are part of the problem.

Ahead of time, I wrote out a speech. But of course, I deviated and went off script. In large part, because I was the third of three speakers and felt a decent amount just echoed what had already been said. So, I rambled on through it and left out some good chunks of what could've been said.

I'm sharing that here, to put it out there.

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First, let me just say thank you to everyone for being here on this nice sunny day, with all the news of the hurricanes south of us here and the wildfires in the NW. So I just want to say thank you even more for being here despite all of that in our hearts and minds.

My name is Mike. I've been living with type 1 diabetes since I was five years old, more than 30 years now. I used to live here on the Southside of Indy, before moving back to Michigan a couple years ago.

And I worked downtown just a couple blocks away. So I drove by this Lilly building every morning on my way to work.

At first, I was in awe and humbled by the history it represented, since I’d been taking their insulin since I was a little kid. But over the years, it got more difficult to look at this building without feeling frustrated and angry. This was from 2006 to 2012.

Insulin prices kept going up for a single vial, not just here at Lilly but across the board.
  • Roughly 300% in just the past decade or so.
  • Over 1,100% since Humalog was first introduced 21 years ago.
More and more people can't afford insulin. No matter what Big Insulin says about people paying the list price or net price, 57% of people using insulin pay the actual retail cost at some point during the year. Lilly knows this first-hand.

That happened to me a couple years ago.
  • $700 a month to get 3 vials of Humalog per month, back in 2015.
  • That was more than half my housing cost per month.
  • Had to get samples from my doctor. 
  • Borrow insulin from a friend. 
I have good insurance coverage now and only pay a fraction of what it would cost otherwise, but it scares me so much. Without insurance, I'd have to pay $1173 a month just to get the two different types of insulin I need to survive. That's outrageous.

I'm certainly here speaking for myself, sharing my story and how I feel about this personally. But I think we've all seen how big a crisis this is.

I think it starts with transparency.

We can’t fix a problem until we truly know what that problem is.
  • Why does it cost $300 a vial for insulin, when a brick of 10 vials at a federal clinic only costs $30?
  • If I'm told it's because they’re spending money to make new insulin, then I want to see proof it’s not going to marketing costs. I want to see exactly the dollars spent on R&D for insulin, not just a lump sum of how much the company spends overall on all of its product development. 
Let me see the data and decide for myself, just like I do for my own budgeting at home.

The insulin companies are part of it and need to do better, as do Pharmacy Benefit Managers + Insurance Companies and others. They all need to do better.

So many of us get frustrated when we’re told “it’s complicated,” but that’s the truth. It is complicated. But we can't stop there and let that be an excuse. The Pharma companies can't just flip a switch or push a button to lower insulin prices. But they can do better.

Someone told me recently:
"I don't see an easy solution to the insulin price issue, because we are dealing with a multi-tentacled monster on the health care front, with each tentacle attached to our wallets."
To be fair: Lilly and the other insulin companies do a lot of good in this world, including helping people out affected by the historic storms we’re seeing. But that doesn’t make up for the fact that they’re failing where it matters most --

  • People can’t afford the insulin or get access to it
Pretty amazing. Honestly, it seems like they’re just paying lip service to the idea of meaningful transparency.

And that's why I think Congressional action, lawsuits, media coverage and public pressure is all so important. It’s how we get to a place where we want to be: Lower insulin prices for everyone in the US.

Thank you.

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Thursday, August 31, 2017

Appeals Letters... Fighting for Diabetes Meds I Need


I've wanted to share these two appeal letters that my doctor and I crafted in order to get the needed insulin.

Clearly, this is our decision. Non-medical switching isn't cool, and I don't want to be a part of it. When it comes to my medicine and health supplies, my doctor and I should be the ones deciding what's best for me --not an insurance company or Pharmacy Benefit Manager (PBM) and insurer that sets a formulary.

And so, once my insurance company offered an initial denial for each of these requests, we fought back. For the sake of #PrescriberPrevails -- because this is our choice to make, not anyone else to make. That is basically practicing medicine without a license, and that's illegal.

Here are my two appeal letters, one for Afrezza inhaled insulin and another for Tresiba basal insulin. Both succeeded in getting coverage from the said insurance company.

My Afrezza Appeal Letter

https://drive.google.com/file/d/0B05u4rlsHt-iTjhHTExIZTlmSTQ/view?usp=sharing


My Tresiba Appeal Letter

https://drive.google.com/file/d/0B05u4rlsHt-idE9iNkVmY2k4bHM/view?usp=sharing


Hope these are helpful, for whatever they're worth to people. It all comes down to #DiabetesAccessMatters#PrescriberPrevails, and #KeepMyRx. My doctor and I should be making these decisions, not anyone else.

Friday, May 19, 2017

One, Two, Three... And Down We Go

So, Day Four of Diabetes Blog Week 2017.

Topic: What Brings Me Down (aka Throwback Thursday, if applicable).

Ummm........

OK, fine. Let's cue the ELO here, why don't we...




If not that, then maybe...


And shit, if that doesn't work, then maybe the only recourse is...



If those three don't "bring me down," well then screw it, I'm going to ride this glucoaster of being High for a bit.

And then, most likely: I'll have to tell you again, before I get off the floor (due to a triple-effect hypo).

Does that answer the question?!

If not, maybe another #DBlogWeek blogger has a better answer in mind... 

(Seriously, I get it's a play on Mental Health Month and what challenges your mental health when it comes to living with diabetes -- and so I'd double-down on my above points. Because, seriously. High blood sugars are so much a part of mental health and diabetes. It's beyond ridiculous how closely tied together those two issues are, along with other things -- like your thyroid gland being out-of-whack, lack of sleep, and so on. If you don't believe me, Google it. Or just look back at what I've shared on this very topic, in the many years past. It's totally a thing.)

Tuesday, May 16, 2017

Shadow Returns To Say: The Cost of Living with My Diabetes

So, Day Two.

Diabetes Blog Week 2017.

Topic? "The Cost of a Chronic Illness."

Sure, many are writing and being oh-so-serious. Because, this issue is... oh-so-serious. And downright enraging and maddening and so on and so forth.

But there's another side of this question, relating to the cost of living with diabetes.... from the POV of "What's the cost YOU FACE when living with someone who has T1D?"

My beloved cat might have something to say, if she were around these days to speak about this.

Shadow's been gone for 5 years now, her Cat Dreams of World Domination Unrealized. But she certainly paid the price as a result of living with us and my type 1 world -- especially in the context of DOC craziness.

For example, being subjected to all kinds of strange behavior -- like being forced to wear diabetes supplies on her head... which as you can tell, SHE ABSOLUTELY LOVED! ;)


If she were around today, Shadow might say something along these lines....

ME: Here Kitty Kitty... let's have you wear this insulin pump tubing on your head...!"

SHADOW: Never.

Me: Come here, kitty....

SHADOW: No way. You pick me up when I don't want to be picked up. You trap me underneath laundry basics on the bed. And then you wonder why I try to steal your diabetes meter kit... or eye that insulin vial and syringe, knowing I could take you out...

ME: It's just a fun picture, Shadow. A-ha, GOTCHA!

SHADOW: I. Hate. You. And I will murder you in your sleep.

ME *snapping a photo to share

SHADOW: This is the cost, for being able to live in a good home with two humans who appear to care about me and feed me each day. Even if I'm subjected to this type of "torture"... and that damn idiot dog. 

ME: Now, pose for another one, Shadow...

SHADOW: *narrows eyes. You fool. Ever wonder why you have unexplained Lows sometimes? Yep, that was me, pawing the insulin pump quick bolus button while you slept...

ME: Love you, Shadow Cat.

SHADOW: Well, maybe you're not so bad... but just wait. We will dominate the world. Not even the Riley Dog will be able to save you.



(((sigh)))

Oh, Shadow. Miss you bunches. And even though you paid the price of my weirdness, it was all in good fun and out of love.

So, there it is. Shadow paid the price. All in good fun.

#LikeYouDo when living in the diabetes world.

But, you make a face and move on, because life indeed goes on. No matter what the price is you're being forced to pay for being a visible part of this D-World.


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#DBlogWeek on Twitter, Yo. A whole lotta goodness going on.

Monday, May 15, 2017

Expecting the Unexpected

There was a diabetes day more than a decade ago that hit me like a ton of bricks.

OK, maybe that's the first like right there... when I said "diabetes day." As if, every single day of my life isn't a "diabetes day" where my pancreas isn't doing what it should and I must take on that role and think about everything related to a D-Life.

No, this was a particularly more-focused D-day, because I had an eye doctor appointment.

Yep, one of those dreaded doctor visits where you get bright lights beamed into your deepest eye sockets, and you try the impossible of bravely holding back the tears as you look through the whiteness as you "Look Left, Look Right, Look Up, Look Down." And then occasionally, you must face the humiliating task of trying to see tiny numbers and letters and not appear stupid, or ID the closely-colored hue book that has hidden numbers and letters, but is not easy given your partial color-blindness.

(((Sigh)))

And that's just the regular stuff, aside from the ever-exciting "How are your blood sugars?" and "What was your last A1C?" questions, where I must resist the temptation to be a sarcastic asshole and just be a calm eye patient.

Nope, the real suspense of these eye doctor visits boils down the word "retinopathy." Maybe no one else does this, but I am always stressed and nervous about the end-moment where I am waiting on pins and needles for the eye doctor to tell me whether my retinopathy has gotten any worse than the last time we SAW each other (pun intended).

My first retinopathy dx'd came in early 2007 (according to what I wrote in Confessions & Complications back then).

And it was unexpected. Except for the fact, that I'd been fearing and anticipating that dx'd for most of my life since I was diagnosed with T1D at age 5.

Even though I've been anticipating that most of my life, and was ready to hear it that day, I wasn't ready. You never are.

It was about as mild as it could be, and the only advice was "keep your BGs in check," and we'll keep monitoring it. That's really been the story ever since, with little change requiring anything more than "diabetes care as it should be."

So, that's been the story ever since. I think this speaks to anything in diabetes, and well beyond into many parts of life.

You may expect something to eventually happen, but when that time eventually comes, you just aren't ready no matter how much you've thought about it or prepared. Maybe that advanced prep will come in handy and help cope or move forward, but you can't stop the unexpected from happening. You just have to roll with the punches, and move on.

Expect the unexpected. Always hope for the best, but be ready for whatever good or not-so-good eventuality is probably going to happen.

Welcome to life.


This is my first Diabetes Blog Week 2017 post. Others from around the Diabetes Online Community (DOC) can be found here, as well as on Twitter/Facebook/etc by searching the #DBlogWeek hashtag.