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 likihood 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, science shows your water is toxic but we want you to use that for three months. AND THEN, go next door to the house that science also shows has containated 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 "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 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 physician, and we trust his medical advice.

Tuesday, June 14, 2016

Thoughts on #DiabetesAccessMatters From the Airport

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

I've got some personal thoughts to share.

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

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

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

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

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

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

They do.

I’m happy about that.

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

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

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

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

Fuck.

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

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

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

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

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

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

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

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

Insulin costs way too fucking much.

Devices do, too.

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

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

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

Anyhow… ranting aside.

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

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

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

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

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

Son of a bitch.

Clouds may be all to see, anyhow.

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.

So, BCN, let me get this straight:

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

Yet now, when I need the Dexcom Receiver and Transmitter that make the sensors actually usable, 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.

Essentially, 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.