Tuesday, November 15, 2016

My Faulty Pancreas Says: "Get a Flu Shot!"

I've not been a fan of flu shots for most of my life -- even though I know they're important with diabetes when the colder winter months set in. As a kid, getting an annual shot was standard protocol. But when I reached my adult years, that practice mostly fell off my radar, and became only an occasional afterthought.

But that's been different in recent years, and I have my friends in the Diabetes Online Community (DOC) to thank for changing my mind.

True confession: Before getting back into the practice, my last flu shot was in 2012 (according to my blog posts reflecting as much). That was specifically because of the flu we came down with following Thanksgiving that year before, giving me a kick in the pants to re-start pursuing the vaccine. Of course you'd think I'd be all over preventing that "real person sick" (beyond the usual diabetes yuck) every year, but let's face it, there's a lot to manage with diabetes and sometimes we let things slip.

These days, working out of a home office, I guess I decided my need wasn't as great as if I were regularly exposed to people. My wife Suzi has actually been diligent about getting her annual shot since our 2011 episode, in large part because she works at a financial institution where she has daily interactions with the general (germy) public. So she's guarded on the front-end, but I have not been.

Until now.

Maybe it's the move back to Michigan, which brings at least two extra months of winter -- one on each end of the season -- and chills to the bone thanks to the Great Lakes wintry effect. Or maybe it's just the return to our roots that set the stage for my renewed motivation. Whatever the reason, I've taken the shot to the arm this year, and plan to do so annually from now on.

We haven't yet found our way to a new primary care doc yet, but our local Walgreens does the job well enough. We both got our vaccines just after Thanksgiving, and I daresay this is a key time for people with diabetes (PWDs) who haven't gotten done so yet, because:

  • Typically, the four months of December through March make up the peak season for the flu, even though it can hit hard anytime during winter. So before Christmas is a great time to get an influenza vaccine.
  • Keep in mind that it takes about two weeks for the vaccine to get hold and take effect in your body.
  • Yes, people with chronic medical conditions like us are on the list of those who are at highest risk for the flu -- along with kids and those older than 65. See, we PWDs do get priority status for something!
When I started looking into it, I found there's a lot I didn't know about the flu and the vaccine in general. Being a history buff, I was excited to stumble across the "History of the Flu Shot." Amazing to think that a century ago, the flu was a worldwide pandemic that killed millions and infected one-fifth of the world's population. Whoa! Thankfully, a lot has changed since then on the influenza front.

My frend Wil Dubois has also offered some solid advice and information on this topic. Some important factoids about the Flu Season:

  • Depending on the year, the CDC reports that the flu strikes between 5-20% of the U.S. population, sending more than 200,000 people a year to hospitals. As many as 49,000 of them never go home again. Most of those deaths are in the elderly, the young, the pregnant, and "people with certain health conditions."
  • For more info on the flu + diabetes in particular, there's a host of materials available from the "official" D-authorities -- from the American Diabetes Association to the Joslin Diabetes Center and the CDC.

Fellow D-peep Christel Aprigliano who blogs at The Perfect D is one of the most vocal flu shot advocates we know, and her writing was definitely a factor in pushing me to get a shot this year. Like her, I slacked on getting flu shots for years. But now that I'm in my mid 30s and we're around our friends' and family's children more often, we are renewing our flu shot vows, so to speak.

Of course, "real person sick" can still happen and I have my Sick Day Plans ready.

We're stocked up on chicken soup and green tea, and I'm prepared with my D-specific remedies that include higher basal rates and regular 7-Up/Sprite, which actually helps when you can't keep anything down and need to keep your BGs from plunging.

But hopefully, the shot I got does the trick and we can sit out this Flu Season. We shall see. All we can do is be prepared.

- - - - - - - - - - - 

This post written by Mike Hoskins originally appeared on DiabetesMine in Oct. 2015.

Tuesday, October 4, 2016

Playing Darts

For the past five months, I've been unconnected to my insulin pump and have been doing daily injections and inhaled insulin to keep my blood sugars in check.

All is well on that front, and at this point I have no plans to go back to insulin pumping in the near future.

As some may remember, I've been on a pump break since mid-May -- mostly because of my need to mix it up in my diabetes management, to motivate myself to get back in gear. But also, because of my frustration and disappointment in Medtronic Diabetes and their business decision-making that I, personally, do not feel best represents the D-Community.

Anyhow, with that being said... I'm still perfectly happy "playing darts."

This is a phrase my Loving and Supporting D-Spouse uses to describe my insulin injections. Whenever I ask for her help in doing a shot in the arm, she jokes that it's time to "play darts."

No, she doesn't actually toss the needle at me.

It's just a fun term of endearment we both use, to keep the daily D-tasks more light-hearted and fun in some small way.

This isn't the first time for me "playing darts," so to speak. The first 17 years of my T1 involved daily injections, and once I began pumping in 2001 there were many times I took a short pump break for various reasons. So, this time isn't new, but it may turn into a permanent break... that's still TBD, and I'm taking it a day at a time.

At the three-month mark of "playing darts" in August, my A1C was just about the same (even though I am suspicious that A1C result and think it wasn't showing the full story).

Since then, I've been bouncing around more often on the BG front and have seen some higher BGs over the past couple months due to my own slacking. But I am happy to be experiencing less unexplained hypos, so that's one for the win box.
 
I am hoping that my next visit in November reflects more of my efforts in getting my A1C down to 7%. To me, the treatment choices I've made over the past several months are the best way to get to that goal.



My Personal Afrezza Effect 

 

Afrezza is inhaled, but I've found over the course of a few months that it's barely effective in the evening hours for me. As a result, I turn to NovoLog fast-acting after dinner-time until the early morning hours, when I am happy to start my inhaled Afrezza as needed.

Over time, I've determined that one 4-unit cartridge is more like 2 or 3 units. But even that's not an accurate comparison, because this inhaled form doesn't work the same way as traditional insulin and it's a complete paradigm shift in getting used to its effects.

One thing I have noticed is that since mid-July (or roughly the three-month mark of starting Afrezza), it seems to be taking me more of this inhaled insulin to achieve the same fast-acting response as it did during the first three months.

I have tested this out in several ways -- with no food on board, very low carb and protein, higher "simple" carb meals, little stress and normal temps without any illnesses messing with me. Even have tried paying more attention to my inhalation technique, focusing on that "deep lung penetration" aspect to ensure I'm getting of the powder into my system properly. All of them have shown the same result: a single cartridge of Afrezza just isn't working as effectively as it once did.

 Usually, within 30 minutes I can start seeing the Afrezza Effect on my CGM. At times, it may take up to an hour to reflect any meaningful change, while at other times it's noticeable within 15-20 minutes. All just depends on the day, time and most likely whether a dog wagged its tail overseas...



That doesn't phase me from using Afrezza most of the time, it's just one more piece of information that I use in determining what's needed to keep my D in check. If that means an 8 instead of a 4 unit, or a couple of them instead of one, so be it.

I'm happy this is part of my toolbox to manage diabetes. It's also nice that my insurance company has gotten over its hesitancy in covering this and my local pharmacy seems to have overcome its ineptitude in access Afrezza. For now, at least.

Trying a New Basal Insulin

For basal insulin, I've been using Lantus twice a day.

A new basal insulin that I have just started this week may help on that front. On Tuesday morning, I began using the extra long-acting Tresiba that's supposed to last for 42 hours. This is something my doctor and I decided would be best, since I sometimes tend to miss a basal dose in the morning or evening, and because with Lantus my BGs spike on the tail-end.

So hopefully, Tresiba works better for me combined with Novolog and Afrezza.

At some point, it may be worth investigating new and exciting options in the smart insulin pen world, but that's something to explore down the road once we get into a new year... we shall see.

Appeal of Latest Diabetes Tech?

 

Whether I ever return to my Medtronic insulin pump is TBD, and despite the very exciting recent news of the first-ever Hybrid Closed Loop being approved, I do not have an interest in what the company offers at this time. Specifically for me, data-sharing is a deal-breaker and when MedT tells me that I have to use the 3+ YEAR OLD model and not the newly-designed 630G or hybrid closed loop... um, no. You lose.

More exciting is the Tandem t:slim X2 pump platform that is now available, and while I have no interest in returning to a pump right now, this is the one that temps me the most -- especially since it works with the Dexcom CGM sensor, one that I trust a lot more than the promises of any MedT tech that are still questionable to me.

With those D-tech points aside...

In the meantime, I'm happy using the darts I have and trying to hit as close to the bullseye as possible when it comes to BGs and staying in range.

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.

Friday, August 19, 2016

Manipulating My A1C and Looking Beyond That Number

As my endo read through the medical chart at a recent appointment, I sat there anxiously waiting for him to tell me my latest A1C. He scanned the notes and rattled off bits of information about prescriptions, before getting to the meat and potatoes (so to speak) of our visit.

If you were a fly on the wall at that moment, you would have seen me all jittery, leaning forward in the chair waiting for the words to emerge. After what seemed like an eternity, he spoke:

Your A1C is 7.7%
My heart sank. While not really much different than my previous result, it was a 10th of a percentage point higher than last time at 7.6. Sure, it was only a tiny change, but in my head a screaming voice of judgement shouted: "Your A1C went up!" I was beyond bummed, especially because I've been putting in a lot of effort over the past few months to do better.

Apparently, this A1C was telling me that I was in fact doing worse than before, even if just a little bit.

Then I began to doubt... was this an accurate A1C result?

Since I decided in mid-May to take a break from my insulin pump, my blood sugars have actually been spectacularly better. I'm now using Lantus twice a day for basal, combined with NovoLog for fast-acting and Afrezza inhaled insulin for ultra rapid-acting bolus insulin doses. The goal is of course to increase the amount of time my BGs are in range (70-180), and reduce the number of big spikes and dips in BG levels. I've started seeing more in-range time since mid-May, and I've been happy with my success.

But I also reflected on how I'd been slacking some in the 2-3 weeks leading up to this particular appointment. My glucose variability had increased as I experienced more frequent higher BGs. So it was a bit of mixed picture.

Based on all of that, I believe that my most recent hemoglobin A1C result was somewhat "artificially inflated" from the highs in just the last few weeks -- not reflecting the improvement I've been seeing in my diabetes management over the past three months in full.

In my opinion, this A1C result was lying to me and those who make decisions about my healthcare based on this number.

Science proves that this is a possibility...

A1C Science


To dig into this topic, we spoke with Dr. Irl Hirsch at the University of Washington, a fellow T1 and well-known researcherand expert on glucose variability, who has long criticized relying on the A1C as the gold standard of diabetes management. He confirms that it’s definitely possibly to "manipulate" an A1C with short-term changes, in the fashion that I suspected for mine.

The A1C “is a test you can study for,” Hirsch says. “The latest science shows that yes, even though your A1C is an average of the past three months, 50% of your A1C is based on glucose in the last month.”

He cites several studies on this, going back a decade and further -- one of the more well-known being from 2008, when Dr. David Nathan found that recent glucose variability can impact an A1C result in people with T1D. The data from that study showed that the higher A1C levels, and among those with the highest glucose variability, the result could be off by as much as an entire percentage point!

Dr. Hirsch says that three studies now confirm the A1C doesn’t give the full picture of someone’s diabetes management trends. He points out that many things can impact an A1C result, from medications to iron deficiencies that can cause false A1Cs. Hirsch even notes that racial disparities exist in A1Cs, as scientific data now shows that for some reason in African-Americans, glucose binds more to hemoglobin and that can lead to A1Cs that are on average .3% higher than in Caucasian PWDs.

Hirsch says that someone with an A1C of 8.0% can have an average glucose ranging anywhere from 120 to 210.

“You’re basically throwing a dart,” he says. “We use this number to guide us on our diabetes, telling us whether it’s safe to get pregnant, the effect on complications, whether someone is ‘compliant’ or not, and now to determine how doctors get reimbursed. But it doesn’t show the entire picture, and you really have to look more closely at each patient.”

Ah ha, see?! We knew it!

Revisiting Standard Deviation


My endo agreed it was certainly possible my A1C was inflated, and in keeping with Hirsch's work, recommend I also look at my standard deviation that measures how much your BG levels bounce up and down. (Reminder: low SD is good, high SD is bad, because it indicates big swings.)

It's a bit of a confusing measure, but my doctor told me my deviation of 58 multiplied by 3 should be less than or equal to my average of 160 mg/dL, and mine came in just above that. So he described me as "borderline" but also said not to worry as I've been doing much better lately. That made me happy. It's important to note that you can also have a good A1C level with poor standard deviation in diabetes. So complex!

This all backs up what many of us have been preaching for many years: A1C is not the end-all, be-all measure for evaluating diabetes care. A low A1C that traditionally indicated "compliance" doesn't actually mean our blood sugars are staying in range as much as they should -- and it certainly doesn't take into account the dangerous Lows we may be experiencing. Same goes for the higher end of the scale.

On top of that, we're more than just a number, and there need to be other, more meaningful measures of "success" with diabetes.

FDA Looks "Beyond A1C"

Fortunately, I'm not the only one thinking about this. The FDA is soon holding a day-long public workshop on Diabetes Outcome Measures Beyond Hemoglobin A1C, facilitated by the agency's Centers for Drug Evaluation and Research (CDER), in partnership with JDRF, American Diabetes Association, American Association of Clinical Endos, JDRF, the DiaTribe Foundation and Scripps.



The meeting will delve into what the FDA should consider -- beyond A1C impact -- when evaluating new diabetes devices and drugs. This upcoming workshop follows the historic November 2014 webcast discussion between the FDA and Diabetes Online Community -- the one where so many people tuned in live that we ended up crashing the FDA's servers!

We're delighted to see this finally being officially addressed, as I personally can think back to my younger days when I'd say to my diabetes care team: "I'm not doing this for a better A1C, I'm doing this so that I am not having severe High or Low blood sugars!" Quality of life with diabetes is about keeping things steady, after all.

To me, I think it's important to look beyond A1C at three important data-points that are more reflective of how I'm doing:
  • Time In-Range: This is a key measure for me, because this is an indicator of how on track my diabetes management really is. 
  • Hypos: These are dangerous and can lead to scary situations where I lose the ability to think and treat myself, and possibly even consciousness. If these happen overnight, I might not ever wake up. So the fewer Lows, the better.
  • Glucose Variability: My blood sugars should be as smooth and steady as possible, since spikes and dips can lead to higher blood sugars and lows.
Personally, I just hope the FDA hears loud and clear: We are not just a number.

Wednesday, June 29, 2016

Remembering Diabetes Advocate Kitty Castellini

To those who knew her best, Kitty Castellini was a lover of bologna, a practical joker and passionate Disney fan -- not to mention a devoted mom and wife who had a quick wit and feisty personality, along with (believe it or not) expertise in explosives and hazardous materials.

She also happened to be a tireless diabetes advocate who inspired countless people across the globe, founding the Diabetes Living Today weekly radio show and website in 2007 that was one of the early online hubs bringing our community together. Through the years, she received Congressional and state government recognition for her advocacy work, and made history as the longest-surviving pancreas transplant recipient who was basically cured of type 1 for several years.

For more than a half-century, Kitty fought the good fight with a sense of humor and pluck that defined her spirit beyond diabetes. But our world lost her light on June 19 after several months of declining health. Our friend from Vineland, NJ, was 55 years old and she had lived with T1D for five decades.

Kitty's death has hit the DOC (Diabetes Online Community) particularly hard. Many have been sharing stories and condolences online, especially those of us who met Kitty in person in those early days of the initial Roche Social Media Summit. Hashtags #WeLoveKitty and #DOC4Kitty have cropped up in her honor, and our DOC has lit a collective blue candle in her memory.

Her daughter Lauren says the DOC meant the world to Kitty.

"She poured her heart and soul into diabetes this and DOC that, and she loved being able to reach out and help anyone she could. It made her so happy. That wasn’t work to her, it was a pleasure for her and very much an honor and privilege to be that voice speaking out to help people. You all meant so much to her, and were another family to her."

Kitty's Diabetes Story


Kitty was diagnosed with T1D as a toddler in 1963, and her older sister too was diagnosed with T1D at a young age. She shared her remarkable D-story many times in different places over the years, and this guest post from a couple years ago recounts her 50-year journey quite well.

Of course, many knew Kitty following the pancreas transplant she received in 2004. A signature photo of her enjoying an ice cream sundae following the procedure at University of Maryland Medical Center appeared in numerous publications, and she was producing her own insulin for nine years up until 2013 when her transplanted pancreas eventually failed from a virus.

That length of time made her the longest-surviving pancreas-alone transplant recipient in the world, and as she was effectively cured she'd often describe herself as a "former diabetic."

"Her advocacy and dedication, that gave her a whole new purpose that she hadn’t realized she was meant to fulfill before the transplant," Kitty's daughter says. "I want everyone to know that she loved her work in the Diabetes Community."

After 2013, she returned to a Medtronic pump (as she'd been on before her transplant) and became a Minimed Ambassador. Her Diabetes Living Today was a nationally syndicated weekly radio program on 92.1 WVLT. It was entirely her creation and she handled everything herself -- from selecting guests and topics, to sharing news tidbits, to designing and maintaining the show's website, and even securing the legal trademark protections. For a while, she co-hosted the show with Dr. Joseph Fallon, and after they parted ways professionally he remained her endocrinologist. Among her many D-related achievements were recognition from the U.S. Congress and New Jersey Senate in 2007 for her diabetes advocacy work, and in 2011 she was recognized as a Roche Diabetes Care Hero and Torchbearer.

Thanks to her own experiences, Kitty had a huge place in her heart for cure research and fundraising, and she'd become a strong advocate for the Diabetes Research Institute (DRI) in Miami, FL.

Remembering Kitty


D-Dad Tom Karlya who works for the DRI wrote a beautiful personal blog post about Kitty and offered us this statement:

"The Diabetes Research Institute and Foundation, as well as our entire community, lost a dear friend and powerhouse in advocacy with the death of Kitty Castellini. Having T1D herself, she would often remind us that she was a 'Union Gal' and participated years ago in our Dollars Against Diabetes (DADs) Event each Father’s Day. Her passing on Father’s Day, I believe in Kitty’s style, will serve as a reminder for many years to come that she will be with us. As an organization, we are sad, but were so fortunate to have had Kitty in our corner. She believed in our work. She fought right until the end… and we will continue in that spirit in Kitty’s memory. Our prayers, condolences, and thanks to her family for sharing such a wonderful woman with us, as well as the entire diabetes community."

Kelly Kunik at diabetesaliciousness, a fellow Jersey gal who first connected with Kitty after reading a 2008 local newspaper story on her, cherished their friendship and regular phone conversations -- which were never short, Kelly points out.

"Kitty was a DOC original with an incredible spirit and kind heart, a tremendous will to live and succeed no matter what was thrown at her in life," Kelly said. "She picked herself up and made adjustments without dwelling on it, and when life threw her lemons she threw 'em back."

Diabetes advocate and longtime type 1 Gina Capone also met Kitty at the first Roche Diabetes Summit in 2009, bonding over a mozzarella and tomato appetizer and becoming instant friends. Over the years they became close and Gina considers Kitty a mentor, close friend and surrogate mother.

"She always called me her ‘Gangsta girl,' and when she was pissed about something she'd say, 'they can kiss my country-styled white ass.' That always made me crack up!" Gina recalls. “I'll never forget her funny sayings, how she was always so smart and right about things, her feistiness and how she loved people. Kitty was always so compassionate and caring about things she really believed in -- especially diabetes advocacy.”

Career as an Explosives Expert


Of course, Kitty's story is much more than just diabetes. As her daughter and friends remind us, Kitty had an indomitable spirit and fiery personality packed with unabashed kindness and compassion. She could be "loud in your face" and humble at the same time, in just that Kitty kind of way.

As Kelly puts it, "Kitty was good at calming waves but rocking the waters when needed. She wasn't shy about telling you how she felt."

Diabetes was really a second calling in life for her, so to speak. Kitty had retired in 2000 after two decades for the Laborers International Union of North America. She was a confined space entry specialist with a license as a first responder in hazardous chemicals and explosives. Throughout her career, she never missed a day of work and worked her way up the ranks from flagger to foreman, working on many Superfund construction sites with the Army Corps of Engineers.

"She was really committed to her career, in the same way that she became committed to diabetes advocacy," Lauren says. "She knew she had a lot to lose, and she wasn't going to let anything stand in her way. That meant being a single mom, working a man's job, sending me to private school, and becoming such a voice in the diabetes community. She was a woman on a mission, in every aspect of her life."

Food Lover and 'Disney Freak’

Anyone who knew Kitty can also smile at her other big passions in life: food and everything-Disney.



Kunik, for example, remembers meeting up with Kitty at the airport and seeing her eating a bologna and cheese sandwich, a favorite as she loved that. Food became a big thing in her life after the pancreas transplant because she loved being able to eat without worrying about her diabetes, Kelly says. In another life, Kitty could have been a food writer... or a Disney advocate, based on that fandom.

Often before and after diabetes events, Kunik remembers how Kitty would set aside from to travel to DisneyWorld to visit the park. She would sometimes call ahead to order Disney items ahead of time, and would bring an extra bag or suitcase to cart her collectibles home. Never enough time thanks to the events to go to Disney, or if the weather was too hot or cold? Nonsense, Kitty would insist the trip be made. And she was always punctual, especially when Disney was in play.

The first time I personally met Kitty in real life, we sat together at the Roche Social Media Summit in 2010 (ironically, in Orlando). We shared our diabetes stories, but it was our mutual love for Disney that made us instant friends – as she was a self-described “Disney freak” and my wife and I had honeymooned there. Turns out Kitty and her husband Gary took their marriage vows at DisneyWorld, and the park was a fixture in Kitty’s life.

Almost every year for 25+ years, Kitty and Lauren would travel to Disney together as a mom-daughter tradition, and Kitty had a famed Disney collection, with countless collectibles all throughout their house.

“Everything is Disney, I’m not kidding – from the spoon holders, salt & pepper shakers and teapots, to the very nice curio cabinets for all of her collectibles to go in,” Lauren says. “The whole house, it’s nuts. She was so passionate, and I have videos of her down in Disney when you could hear her at shows shouting and cheering for Mickey over crowds. She just loved it.”

Their last visit was in October 2015, the first time they’d been to Disney during that month that happened to fall on Lauren’s birthday. Kitty insisted on going even though she was visibly weaker at that point. Lauren feels her mom may have unconsciously known it would be her last trip – at least for a while.

Lauren plans to continue the Disney tradition, and will travel there later this year in honor of her mom.

One story that stands out about her mom, Lauren recalls, was during her first of college around Thanksgiving time, when the local ABC affiliate in New Jersey was giving away a trip to DisneyWorld. Her mom would go to the nearby Boscov's department store every day to enter the giveaway, calling Lauren with daily updates on her entries.

Lauren recalls just sitting down for lunch with friends in the college cafeteria when Kitty called and told her she’d won the Disney trip! She didn’t believe it.

“She’s a practical joker, and loves to joke and prank people. So I didn’t believe her, and said ‘No you didn’t!’ and hung up on her,” Lauren recalls. “She called back and said ‘I’m serious.’ It was for her and 7 people, and we went down for about five days and they put us up in a deluxe resort. It was amazing.”

That Disney trip came before Kitty's pancreas transplant in 2004, and Lauren said her mom was still using her insulin pump at the time. She remembers Kitty doing a rose ceremony at the Magic Kingdom, tossing in a coin and making a wish at Cinderella's Wishing Well near the castle inside the Magic Kingdom.

“She made her wish for a new pancreas, and vowed that if she could get it, then she’d use her voice to help other people,” Lauren said. “Her wish came true.”

A Lasting Spirit


Since her mom passed away, Lauren says she, Gary and the rest of the family been touched by the outpouring of support from the Diabetes Community. She also has to laugh at how she feels her mom's spirit is still around, having fun. Her step-dad bought a nice suit for the funeral services and as he went to put on his dress shoes, the heels broke. So he opted to wear a comfortable pair of black shoes instead.

"I'm not one to believe in ghosts, but I do believe in spirits... and we were laughing that it was a practical joke from mom. Or that she wanted to make sure he was wearing comfortable shoes," Lauren said. "She’s sending some kind of message.”

We can't help but tear up when thinking about Kitty, especially when scrolling through her tribute page and photos online. We're so very sad to lose her, but it does bring a smile thinking she may be having blast with Mr. Walt Disney himself... and probably playing practical jokes on him, too!

Kitty lives on in our hearts and continues inspiring us throughout the DOC. Thanks for everything you gave us, Kitty, and no doubt you'll continue making a difference in this world.



 - - - - - - - - - - - - - - - - - - - - - - - -

This post by Michael Hoskins was originally published in June 2016 at DiabetesMine.

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.

Wednesday, June 8, 2016

First Month of My Insulin Pump Break

A month ago, I decided to step away from my Medtronic insulin pump.

This was long overdue, a needed change that I needed to revisit in order to get my diabetes back in line. Yet, I had been putting this off and it wasn't until Medtronic's business decision to screw with patient choice and access that I made the final personal decision to disconnect from my pump and go back on injections like I've done a few times in the past. My first pump vacation lasted for about five months in 2010, and led to a 1.1% drop in my A1C. The later vacations also saw smaller drops, but still they helped me re-focus on D-management.

And so, that's what I set out to achieve in the here and now. 

After my first month of this #PumpHiatus, my BGs have been phenomenal compared to how they were before.

Glucose variability is hella better, and my A1C dropped from 8.4% in February to 7.6% in early June! This was also down from my A1C last Fall where it rang in at 9.1 -- so progress continues, and I'm very happy.

My endo is happy, too.

Here's what my D-data shows:








(Enter first air-pumping here!)

A few specific reasons are behind the improvements, I believe.

  1. Discipline: Whenever I mix up my management routine, I tend to do better. So going back on MDI has motivated me to pay closer attention to all aspects of my D-care, from insulin dosing and carb counting to exercise effect and so on. Whenever it comes down to eating something, I must weigh whether I want to dose insulin for it -- and that more often than not has made me second-guess the desire to eat at that time. 
  2. Low(er) Carb Eating: Yes, I have been watching the carbs and taking in fewer of them. Instead of a sandwich for lunch, an avocado with chicken or tuna salad. More veggies instead of rice or pasta. More fish and meat, and even less beer (WTF?!) that's sweeter and more carb-heavy. This has meant less glucose variability, a pretty certain consequence of carbs for me. As a result
  3. Afrezza: Yep, I'm back on inhaled insulin. For close to a month,  I've been using Afrezza and am LOVING the blood sugar effect it's helped me achieve so far. I'd tried it out last Fall for a few weeks, but decided that it wasn't something I wanted to continue using because of long-term concerns about potential lung effects. But none of that's known for sure, and so I was willing to try Afrezza again once going on my pump break.
    I've been using it for higher carb meals and larger corrections, keeping Novolog pens as my "base fast-acting insulin" used for smaller doses and meals that are more predictable. This works the best for me, instead of using Afrezza 100% of the time. I still have some reservations (possibly paranoia??) about long-term effects, and so I am not going full force with Afrezza. For me, I'm also pretty confident in my ability to improve even more and get to a better place as having Afrezza in my D-toolbox along with other insulins, my CGM and everything else.



    For the first few weeks, I was actually fortunate to snag some samples to use and didn't have to buy it myself in the beginning. Now, those samples are gone and I'm going through the process of getting insurance approval for Afrezza ASAP, so I can weave this into my routine again.
Overall, I've not calculated how much less insulin I am taking but that's a work in progress and I'll start doing that D-match for summary sake before long.

I've just recently started using my Dexcom more fully, taking advantage of the "Events" feature that allows me to chronicle insulin doses, carbs, exercise, Lows, Highs, Alcohol, and Stress.

And no app is needed for insulin dosing, for me. I just do the math -- that's easier for me. If I am 200 and need to correct to get back to my preferred 100 level, it's a simple equation using my correction factor of 25 points per unit of insulin:

200-100 = 100....

/ 25 = = 4 units.

Typically, my insulin's still kicking for about three hours so any additional correction doses during that time would be scaled back significantly, depending on the exact timing.

So, things are going well.

My next A1C is slated for mid-August -- a time my endo and I chose specifically because it will be a good follow-up to see how my A1C fairs for a full three-months of this #PumpHiatus.

As of now, taking a step away from my pump was the best decision I could've made for my D-management at this point. I'm eager to see what the next couple months bring.

Thursday, May 26, 2016

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

I can't even write this post without shaking my head in disbelief, wondering how such stupidity exists in this world.

That first sentence should tell you immediately that this is an insurance company related post.

Back in March, I wrote about my challenges in getting my Dexcom CGM sensors approved by Blue Care Network of Michigan. Despite my using these sensors for a few years (but never before dealing with this particular Michigan-based HMO), the insurer declined them as not medically necessary. I wrote a Letter to my Insurance Company and that was shared widely, including on the Huffington Post.

Despite telling me that an appeal would be necessary to demonstrate that I met the required criteria, BCN soon changed its mind. A BCN rep actually told me that she received a call from her higher-ups, to "look at my case" again. She did. She saw that I'd been using these Dexcom sensors already thanks to other insurance companies' approvals, and she marked it approved.

Hey, great. Only problem: I didn't actually need the sensors at that time, and my now-required medical supplier had decided to just pull the trigger on ordering these CGM sensors without my consent. So even though I now had the green light from insurance, I declined these sensors and yelled at my supplier for starting this whole process unnecessarily.

Fast forward to now. We've reached the sequel in this story.

Since that time in mid-March, my 1-year warranty has expired on my Dexcom G4 with Share receiver and I am also in need of a new six-month warranty G4 transmitter. So, in early May, I began that process to get a replacement for each of these key components. It's particularly important because I don't have any backups, and in just the past couple weeks I've noticed my receiver seems to be on the fritz.

I'm losing signals more often, the battery is losing its charge frequently, my data seems to be more inaccurate, and sometimes it won't even start charging when I plug it in.

I've been relying on Dexcom for years now, in large part due to my hypo unawareness. And with my recent push to get into better control and keep my blood sugars lower, I'm even more nervous without my Dexcom on board. So, timing is critical here.

As always, the doctor-supplier-insurer process is slow. But now I found myself facing resistance from my insurance company to approve my Dexcom Receiver and Transmitter.

At first, they denied both. Then after another call from my doctor's office during the "peer to peer" process, they signed off on the Receiver but not the Transmitter.

((sigh))

So, BCN, let me get this straight:

You approved the Dexcom sensors in March even though I didn't need them.

Eventually, you decided I could get a new Receiver.

But now, when I need the actual Dexcom Transmitter that make the sensors actually usable so I can see data on the Receiver, you won't approve those????

OK, BCN, let me make this simple for you to understand. If my diabetes devices were like car parts, this is basically what you're saying:



Yes, this is like giving me new tires to drive on when I already had good road-worthy tires, but not approving the car that I need to actually use those tires? Or, keeping with the car analogy -- you've approved a steering wheel for me, but won't allow me to get a car that I need to use that steering wheel.

I'm sure the same could be said about an engine, that I've got all the other needed parts but in the end I can't actually make the car go anywhere.

Essentially BCN, you're saying "GO DRIVE!" but you're only allowing me access to this:



Doesn't make sense, does it?

I phoned BCN to ask for more detail. First, they rattled off reasons why it was "still pending," including the tidbit that they needed more info from my doctor's office despite his prior authorization for the Dexcom sensors in March and the insurance company's approval to pay for that. One woman said the prior Dexcom sensor OK wasn't good enough.

My mind is just exploding with how moronic this rationale is.

I asked for more specifics, but the customer service department couldn't explain any more. That would have to be explained by another department, the Care Management team. I was sent there, but a woman there told me that they could only talk to providers, not me THE PATIENT. She actually said that HIPAA prevented her from disclosing any more to me, because I wasn't the doctor.

Of course, I objected. And argued with her.

That's a violation of my federal rights, I told her. And then I launched into a rant about using her name as the basis for my soon-to-be-filed Administrative Complaint with BCN. She consulted leadership for about 10 minutes and caved on that point. Eventually, I whined loud enough that a supervisor decided to walk my case over to a department nurse to review and make a determination on it.

By day's end, my Dexcom receiver and transmitter were both approved.

Still, no one could answer my simple question about what had taken so long and why this was still pending.

I doubt they even understand why, because it's all so arbitrary. Insurance companies are designed to deny first, and apply logic later. Clearly, these people don't even understand the devices they're making important decisions about, and they're screwing with patients' health and lives in the process.

Maybe people who work at these insurance companies have a different sense of cars and transportation than I do, and that's why it seems so off the wall. Maybe they do build their own cars using the tires and steering wheel they buy separately, before they even have a car to put them on. That's the only way this makes any logical sense.

Unless, of course, you just admit the truth that the system is broken and insurance companies don't know what they're doing, and are only putting profit about patient health.

That's the only sad way this makes any sense at all.

Monday, May 16, 2016

Ron Swanson's Message For Diabetes Blog Week

This is Diabetes Blog Week, Year 7.

The Prompt: Message Monday. Share your message, all about why you blog. Yep, share that story.

Everyone's got one. All the many diabetes blogs are sharing their messages, which are pretty consistent on why they got to blogging and what's important to them.

Yeah, that's all great.

But I'm not currently in the mood to advocate or press my brain into thinking about diabetes more than I have to. Seriously, I do that enough in my day job.

On the personal front these days, my message is simple: Fuck you, diabetes.

Seriously. These 200+ blood sugars in the past week are kicking my ass, and while I am taking a needed pump break and don't feel discouraged about that, it's getting to me that I'm higher than normal and am just tired of this.

I"m somewhat burnt out and not all too keen on going deep. So, for the moment, that's all I want to say.

I'll let the dozens of other bloggers go into whatever serious point they feel the need to.

I may not write every 5 days, because I don't have to. It's about writing on my own terms, as I need and want to. I hope that's why everyone blogs, so it's from the heart and serves whatever purpose they need it to in their world.

Really, I don't give a shit. And I'm perfectly cool with that right now.

For me, I'm going to just keep navigating blood sugars as needed. And now, it's time to catch up on Game of Thrones before relaxing with a little Ron Swanson and Leslie Knope.


Monday, May 9, 2016

Goodbye, Medtronic (From A Once-Loyal Pump Customer)

I am mad, sad, confused, conflicted, and utterly disappointed.

All because of the recent UHC policy change about making Medtronic it's preferred, exclusive in-warranty pump supplier.  My head has been spinning and my emotions have run the gamut, wondering what I truly think and how this actually affects me. No, I don't have UHC at the moment and I have found the MedT pump the best choice for me.

However, I can no longer personally support you as a customer, Medtronic.

Photo from A Sweet Life.
This is tough for me, both as a patient who likes your pump, but also given the professional hat I wear as a diabetes advocate and journalist covering this industry and topic specifically. Make no mistake, I'm trying to draw a line here between the personal and professional as much as possible. I know both professionally and personally there are good people at Medtronic trying to do good in this world, and I hope this doesn't diminish that.

But in the end, I am a patient and diabetes device customer first and this is where my decision is based. This is completely a personal decision, and my POV there is what I'm writing here.

This may not be a big day to anyone other than me, as I'm only one of millions of patients and you have a whole array of products and people beyond just me and my insulin pump. Yet, I think it's important enough to tell you what led me to this decision. And I want others to know, too. So, I will not go gently into the night.

For the past 15 years, I've been insulin pumping and it's been a great piece of technology for me. As a young man in my final year of college, I finally agreed to consider an insulin pump instead of multiple injections per day. At that time, two pump choices existed -- Disetronic (now Roche) and Minimed (now MedT).

I clearly remember my endo at the time telling me the best insulin pump out there was Minimed, and I should make the move to start on that pump. Knowing I had an option, I examined both devices. I also remember my MM trainer at the time, telling me that pump was the best but that clearly I had a choice between the two on the market then.

My preference was MM 508 at the time, which coincidentally was 15 years ago this month. (So, hey, happy Pump Anniversary to me!)

We've been together in various pump generations for the most part since then, even when Minimed got bought by Medtronic and a lot changed in the company culture. Still, we've endured for most of those years... Only once, I deviated for about a year to another pump that's no longer on the market, but that change didn't make me happy and I saw myself not using the pump in the most effective way. My A1C rose in what I believe was a direct result of that and I remember being so frustrated with that other non-MedT pump that I wasn't using it for all of its effectiveness.

Before long, I fled back to my trusted Medtronic Minimed pump.

I was glad to have the choice. Through the years, many more pumps have become available and I've been lucky enough to try them out to see if they were any better for me. None of them were as good as my MedT pump and the company behind this device, I determined.

Now, it's not so clear based on your company business decisions more than anything.

After struggling with the news of this UHC-MedT partnership, and searching my soul, I can no longer continue as a Medtronic customer -- no matter what I feel about the insulin pump.
 
Medtronic, I just don't trust you any longer. I do not feel you represent me in allowing my doctor and I to choose the device that best works for me

Rather than relying on patient choice and winning a fair fight, you are forcing hands and using the insurance coverage game as a way to hook more people. Yes, people still can choose a non-MedT route per se. But I ask you to consider this:
  • How many will just give up and not fight when they're told by insurers that "We only cover Medtronic pumps in network."
  • How many doctors won't have the time to wage the battle to demonstrate "medical necessity" for this insulin pump, and instead will just encourage patients to choose MedT because it's the market leader and a good piece of tech that's been around for decades?
  • How many patients will hear "more expensive cost for out of network insulin pumps," and see the higher dollar figure and opt for what's technically more affordable?
  • What about all those insurance plans that are, more frequently these days, totally wiping out any "Out of Network" coverage and requiring you to pay the full price out of pocket unless you go with an in-network brand? (My current Michigan-based HMO currently does this, in saying I have no coverage for anything out of network. Luckily, my insurer doesn't at the moment have an exclusive agreement with any insulin pump or CGM company, so I'm OK there for now... Yet, things change and my insurer will probably change next year. So, yikes.)
In essence, you are eliminating choice and access.

I have now seen how you're willing to ignore what patients actually want and do not respect that it's our choice to make.

I'm afraid that before long, this same rationale will be carried over to my beloved Dexcom CGM and I'll be forced to pay a higher cost simply because it's not Medtronic. I will be penalized for choosing what I believe is a better technology, and I just hope I'll be lucky enough to fight the fight and argue for my preferred technology and then I'll be able to afford the higher price-point.

Based on current tech, I will not use the Medtronic CGM.  I'd rather not use a CGM, which I understand and fully grasp would likely have a negative effect on my health, keep me less in range, and ultiately lead to higher A1Cs and potential life-threatening situations. But I see the Medtronic product is inferior, and I exercise my ability to choose my preferred brand -- or to not use one entirely if my choice is limited.

Eventually, I feel this lack of choice could also happen with closed loop tech. Medtronic will likely make it to market first, but I worry that this "we are the preferred choice" mentality will carry over to those competing systems in a way where other APs won't be able to fight a fair fight, and that could even cause them to go under. That's not cool in my mind.

So much is being written about this within the Diabetes Online Community and beyond, and it's a lot to soak up. Particularly, a few D-peeps have written posts that resonate the most with me and had me nodding my head:

This one by Ally at Very Light No Sugar, where she shares this point:
As we over-emphasize cost-cutting, we must be careful not to also snip choice and patient autonomy. Reducing costs sounds great in the short-term, but we cannot disregard the long-term. If patients’ health is compromised by inadequate access to resources, all the costs that insurance companies may have saved upfront will later be seen in hospital bills and subsequent treatment.
Scott at Rollin in the D also writes a Chain of Thoughts where this point stood out to me:
What is the underlying premise that makes UHCs and MDTs actions so wrong?  This is not about choice. This is not about diabetes. This is about insurers playing doctor, and choosing the best treatments based on financial, rather than medical knowledge. The problem extends well beyond insulin pumps and well beyond diabetes. The argument that needs to be made is this: insurers should not be allowed to dictate treatment. The argument needs to be made at a regulatory, governmental level.
Scott also speculates on some points in trying to connect dots and the bigger picture, and while neither of us know whether any of that is actually true, it makes a lot of sense to me and really scares the fuck out of me about Big Brother going all SkyNet in the healthcare arena and sharing info with my insurers without my express consent. It freaks me out that I may be slowly being turned into a guinea pig. Honestly, it any of that is true, then I kind of want to distance myself from this now as much as possible before it gets crazy and there's no way back.

Something else comes to my mind in all of this...  I've also heard talk that MedT recently pulled sponsorship from a beloved organization and summer conference, one that helps people in a way that can't even be put to words. If you check out the event sponsorship page, there's clearly no mention of MedT -- that's striking as the company has been a sponsor of this particular conference for more than a decade.

Whatever Medtronic says officially about this, I'm also smart enough to realize the timing, that just very recently the organizer of this non-profit hosting the conference was publicly heralded for being a part of a new startup developing a cool closed loop system -- one that will, eventually, be a competitor to MedT.

Again, it's all speculation on my part, but I see no coincidence here. And it speaks volumes, if true, in a way that shows MedT cannot draw a line between psycho-social support in our D-Community and its own bottom line. Especially when every other company in the diabetes industry apparently has this ability and continues sponsoring the conference.

This has all been weighing on me, and I've decided to start exploring my options on insulin pumps. I even took the weekend to ponder whether this is really what's best for me personally, and if I feel this strongly about making a change. The answer: YES.

A few days after this whole controversy erupted and the JDRF responded with its stance on supporting choice and patient access, I wondered when my current MedT pump warranty expires. I couldn't find this information in my own documentation at first, and so I called your company to ask that simple question.

Like a smack in the face, I heard an automated message on the call where you tout this new UHC partnership. WTF, seriously?!??

You'd think that with all the fuss over this right now, you'd take a step back and ponder the potential PR disaster you're currently maneuvering. And just maybe, you'd think twice about flaunting this in our faces at least for the moment, while emotions are so high and some of us are on the fence about how we truly feel.

That sealed it for me, and you lost me as a customer, Medtronic.

Of course, I still need to figure out what device I'm going to turn to and when exactly that will happen.

But I cannot remain a customer of a business I so deeply despise for its business practices. Whether it's a smart biz move or not, I don't care. You are pulling the strings to screw with choice, effectively making it more difficult for people with diabetes to obtain the device they really want and will really help them more than yours. It's one thing to win by having the best tech, by providing the most innovative tools. That's what the free market is all about.

Sure, I get that you're not the first to make this move. Others have done it for years in healthcare and diabetes specifically -- insulin, medications, test strips, and so on. To me, this is different because it's caught so much attention and highlighted the bigger problem of access, and because you're the big player on the market doing this now, it's serving as a potential catalyst for change. And this isn't the only issue factoring into my decision; if it was, I might not be ready to say goodbye right now.

I am only one guy, one insulin pumper who's business you have lost. Am I being too emotional and knee-jerk on this? No doubt, I am probably being naive in thinking that a company will do the right thing over its bottom line, thus "shooting itself in the foot" to some extent by helping competitors. It's all complicated and I don't fully know what the answers are and maybe I am being overly-dramatic in making this choice.

But again, it's my choice. And it's one I can currently afford to make, whereas in the future I might not have that chance.

Just like if I walk into a big chain store, and that everything I need and want is in the aisles, but I see every other customer being treated like shit. Even if I'm being treated like royalty, I can see what's happening and know it's only a matter of time before I am treated like shit, too. And so, I choose to go shop somewhere else.

Rest assured, Medtronic: This is not because I don't like your insulin pump, and don't trust you're making better next-gen pumps and CGMs. This is all about your business attitude, and so I say goodbye.

Instead, I will move toward another company that cares more about this community and seeing choice exist for those who want and need it. Those that recognize they are one option, but believe they're the best and are willing to let customers make that case for them instead of cutting our legs out from under us.

Even if that device doesn't have all the best features in my eyes, at least I can look myself in the mirror and know that I am not supporting with my dollars a company that doesn't truly care about me and others in this D-Community.

Be clear, too, Medtronic: I don't want you going away as a choice for people, even if you want all the other choices taken away from us. #DiabetesAccessMatters.

Right now, I am taking an insulin pump break. I've done this before and I've been talking about doing this for the past few months, and right now I need a pump hiatus regardless of all this other business-related stuff going on. This all just motivates me to actually unhook my pump and go back on Lantus pens and Humalog for awhile. In the past, that's helped me get back on track with diabetes management so I'm hoping for that again over the next few months.

So here I am, with my Medtronic pump in the draw for the near future. I am sad, mad, confused, conflicted, and disappointed. But ready to move forward with what's best for me. Most importantly, it's on my own terms.