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.


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 whose 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.