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. It comes down to my doctor and I deciding what's best, 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 and #PrescriberPrevails. 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.

Monday, April 24, 2017

Seeing the Full Story

On a recent drive home from out of state, I happened to hit a stretch of road construction. The interstate was closed down to one lane, with two lanes as well as an entry ramp merging traffic into the single lane.

As my car slowly moved through the clutter, I came to the road crew... Milling around on the side of the road in between the orange barrels. One guy in an orange hat and vest was sitting on a guard rail, hunched over to see his phone in the sunlight. Clearly, they weren't doing what I thought they should be in repairing the road.

I bitched out load.

WHAT. THE. HELL. YOU ARE ALL STANDING AROUND OR SITTING THERE PLAYING ON YOUR PHONE, WHEN PEOPLE ON THE ROAD MUST DEAL WITH THESE HAPHAZARD, NON-SENSICAL LANE CLOSURES!?!?

For a moment, I thought about pulling my car off to the side and getting out to confront the apparent non-working construction crew.

Then, I though about what I wasn't seeing. Maybe there was more to this story than I knew.

By chance, maybe the construction crew had faced a point in their roadwork when they weren't allowed to continue --- like a certain mile-marker where they had been instructed by the powers-to-be that they couldn't go past. So, they stopped. And the main guy sat on a nearby guard rail to send a message to his boss, who might allow them to continue on. He was waiting for a response at that particular moment when I saw him there, hunched over his phone.

Does that change my level of anger?

Or what if they had been working for several consecutive hours and just happened to be taking a break at that given moment when I was driving by? Maybe the guy hunched over his phone was at work doing this tough construction job, even though his wife was on the verge of giving birth to their first child -- and that was why he was checking an urgent message from her during a short break?

You never know.

I thought about this while exiting the interstate, realizing that I didn't know all the facts and maybe I was off-base for being so angry in the moment.

To me, I think this was a perfect example of all that goes on in today's ever-connected world of social media and never-ending cycle of news. Especially these days, we live in such a weird moment where everyone is so quick to get angry, too quick to judge without thinking through all the possibilities of what may be at play. 

Sometimes, people react to a piece of information that is taken out of context. At other times, a tone is implied when there wasn't any bad intention behind it. We make assumptions very quickly and take those to heart, raising our voices and beating a drum without fully understanding the big picture of what we're mad about. Thanks to technology and our immediate need for instant gratification, when everyone has a voice and every voice matters, it creates a lot of angry noise that is not always justified.

Of course, sometimes, the road construction crew is just being lazy on the job and could be doing more. That fact can't be ignored, either. It's just that sometimes, what is actually going on may not be as bad as it initially looks. Maybe it is, but maybe not.

Just possibly, the people who appear to be the villains are just human beings, trying their best in a messed up world.

Getting mad is easy, but stepping back and considering the full picture is not so simple. More of us need to think before reacting, accepting the possibility that maybe what we think we're seeing isn't the full story.

Monday, March 13, 2017

Drinking My Diaversary Juice


Another year with type 1 has come and gone.

For those keeping count, I'm now at 33 years with T1D. And for those who've been following along over the years, you may recall that I self-designated March 10 the date a number of years ago, because I really don't know the exact date other than it was Spring 1984 when my diagnosis came along.

So, here we are one again.

Woo, freakin', Hoo.

I'm not one to really "celebrate" having this chronic condition for so long, but rather I more mark it with a head-nod and drink to the fact that I've managed to survive another year without falling flat on my face and staying put in the ground thanks to D. Sure, there's the whole hopeful mantra of You Can Do This these days, but the fears still exist for me that my time could be closer than I'd like, due to this disease.

Not yet, Hoskins.

Did I mark this diaversary in any special ways?

Not really. Though, I did drink some orange juice.

No, not because I was Low. This isn't a Shelby situation.

Rather, I've been enduring a frustrating Man Cold.

It feels strange drinking juice for any reason other than a hypo, but you can't argue with the Vitamin C powers of OJ in combating episodes of Real Person Sick (you know, when diabetes isn't the reason for feeling ill).

Other than that, not much else to report -- nothing really different about this diaversary from the one last year, the year before, and before that, and so on. Just another under the belt, on my way to the next Joslin Medalist level of 50 years with T1D (which arrives in 2034, assuming I'm still alive and kicking in 17 years).

What is notable about 2017, possibly, is that this year marks the 10-year point of when I really started blogging about diabetes here at The Corner Booth. I've since added a D to the name, but it was in 2007 when my diabetes writing began here. I'd been following others for a couple years before that, and was writing in some other forums (like LiveJournal and MySpace beforehand), but it was here that my D-writing really took form.

Interesting to look back on some of those posts from 2007 -- complications were more noticeable parts of my life, there was peeing apple juice, shuddering in the showering in our first Indiana house, and I was changing insulin pumps from Medtronic to the now-defunct Deltec Cozmo insulin pump. And apparently, I had to do a lot of waiting in my endo's office back then.

And I remember how George, Scott and Kerri were some of my first comments, among others in the DOC who are both still around and have left the online space since then.

Ah, so much in diabetes (and life) has changed over the years, yet some has stayed the same.

On a happy note, this also marks the 10-year anniversary of when we first brought Riley home. That was in August 2007, and while I apparently didn't chronicle that right away, I did write that story in our local humane society's newsletter and years later finally republished that here at the Corner Booth. So, I'll plug that again for my ever-puppy who is now 11 years old and quite white-haired, but still puppy-like and loving her Forever Home Family!

With that, here's to moving into the next year of diabetes and... (wait for it)... getting closer to that cure. ;)

Wednesday, January 25, 2017

Weird Diabetes Dreams

I'm no stranger to having crazy dreams that tie in with diabetes, sometimes in wicked weird and scary ways.

A number of years ago, I recall dreaming that I was buried alive in a coffin and trying to escape when suddenly, a scary hybrid-freak spider appeared -- complete with infusion set spider legs!



(Thanks again to Chris Sparling, a brilliant writer who has provided a number of nightmares through the years...)

Anyhow, my most recent D-dream involved what seemed at first just an every-day happening gone awry.

No memory remains of what the entirety of the dream was about, or how I ended up in the particular moment that I did. But the brunt of what I'm writing about involved me standing in front of a bathroom mirror, probably in the evening post-dinner hours. Apparently, I had eaten a salad with spinach in it with my dinner.

And as sometimes happens, a tiny little piece of that spinach snuggled itself into my gumline in my front teeth.

No big deal, right?

Well, as I stood there brushing and flossing, the spinach didn't budge. Instead, it stayed securely where it was. I used my toothbrush to target that spot specifically, and the spinach instinctively acted like a turtle and hid itself further into my gum. Almost disappearing.

I decided to just slide it out with the tip of my finger, since there apparently weren't any toothpicks in this particular dream, and that worked...

But when I removed the piece it was no longer a piece of spinach -- it was a blood test strip!!!!


Image... THIS 
 
  
+
=

YIKES!

And then, I noticed other "pieces of spinach" were lodged into the roof of my gum line.

And one by one, out came the test strips.

Then I woke up.

Shuddering, with the images fresh in my mind, I went about my morning routine a bit freaked out. And now, I can't do a BG check without getting a little unnerved.

What does it all mean?

Well, I'm no dream expert, but maybe it is related to the fact that I haven't been checking by fingerstick lately and my subconscious is trying to give me a nudge? Or, it happened to coincide with the early morning Dawn Phenom hours and my BG was starting to spike? Possibly, it was related to the fact that I've procrastinated on getting a couple tooth implants for extractions done close to a year ago...?

Who the heck knows.

Maybe it's time to motivate myself to do better on checking my BGs, even when wearing my CGM. And maybe I should also go see the dentist. 

Friday, January 20, 2017

Attention all Time Travelers in 2017



This is a cautionary note to anyone who happens to be time-traveling to, from or during 2017...


Sorry to say, Time Traveling Explorers, this is real. Yep, it's not a joke. 

Even though the Chicago Cubs seriously did win the 2016 World Series (not kidding), this too is also a part of our current reality.


While many joke about this being a plot from reality TV, and it's really not far off... this is not a scripted make-believe item. This is not #FakeNews (which is a thing all in itself at this period in time).

Beware.

For your own protection and sanity, it's probably best if you just avoid the years 2016-2020 and check back on the state of the world (assuming it's still around) after that.

Make sure to be careful, too -- wouldn't want you to land back here in an even more wicked-whacked future to find some crazy Back to the Future 2 alternative timeline where bullying billionaire Biff Tannen lives in a casino resort tower and is in charge despite being a womanizing, narcissistic, vulgar... (oh wait, never mind.)

😟😞 (((Sad, emotional computer icon known as an emoji...)))

Just be careful, people. Please consider undoing whatever you might have done in the past to screw up our present.

As always, go in peace and love.

And if you happen to go back to before 2016, please passs along a big THANK YOU to all of the presidents and let them know they're truly missed here in 2017.

(btw: Do you have any extra seats on your time traveling vehicle... could I buy you a beer and possibly persuade you to take me along?)