Piecemeal

We talked technology at last week's endocrinologist appointment. My daughter is using an Animas Ping pump and a Dexcom G4 CGM. The Animas can be serviced or replaced for another year before we'll have to switch to Medtronic for the last two years of its warranty. The Dexcom version we're using is almost obsolete, so we have to change something, but the question is, how much?

We could close our eyes and jump headfirst into a full switch to all things Medtronic. We would likely be transitioned to their 630G model which works with their Guardian brand CGM system and a Contour meter as a meter remote. This pump would suspend insulin delivery when low blood sugar is detected by the CGM sensor.

The low glucose suspend feature would be reassuring, especially for those few nights per year that my daughter spends away from us. On the other hand we've heard mixed reviews of the Medtronic sensors, in terms of accuracy and calibration neediness. We hear they're improving with each version, which is incentive to wait a while. There is already a more current Medtronic pump, which adjusts the basal rate every few minutes based on feedback from the CGM.. We wonder if we wait a year if we'll have the option of switching directly to their most recent version, whatever that is at the time, which would surely have more bells and whistles than the current offer.

Our other option is to keep the Animas pump for another year and upgrade to Dexcom's G6 CGM. The G6 requires no fingersticks for calibration, and can be worn for 10 days before changing the sensor. The CGM data can go straight to my daughter's phone, and be shared with us from there, or we can choose to use a receiver. The reviews of its accuracy are stellar.

My daughter is comfortable with the Animas pump, and super-excited about the Dexcom G6. So the plan is to move forward with those for the next year.

It feels like a piecemeal solution. But it's not a perfect world. Insurance and corporate deals dictate the diabetes choices we can make. We are destined to be Medtronic people.

Just not yet.

Our Options Can't Include Going Down With the Ship

Sooner or later we'll be contacted by Medtronic and offered a Minimed 630G to replace our Animas Ping. Under the Medtronic/Animas agreement, this pump will be at no cost to us since our Ping is under warranty until March 2021. Any other option will, even with the other pump companies' enticements for former Animas customers, come with expense.

The other two automated insulin delivery systems on the U.S. market (besides Medtronic) have their draws. They're both working with Dexcom, and we have a high degree of confidence it the Dexcom CGM system we currently use. Tandem's user-friendly touch screen, new technology and small size are appealing. Ominpod is the only waterproof system left on the market, and it has (by definition) remote control bolus programming, which is one of our favorite features of the Animas Ping especially when the pump is under a dress or buried under layers of a marching band uniform.

Tandem and Omnipod have their downsides too.

Our insurance company now has an exclusive contract with Medtronic for tubed pumps. A switch to Tandem could still be possible, as was sticking with Animas, since my daughter is still in the 'pediatric' category, but by 2021 she'll be considered an adult. Not only do I worry about the insurance coverage, the newness of Tandem is a double-edged sword in my book. While I hope they're on strong footing, I worry they're not yet established enough and I would hate to repeat our current scenario with a company going out of business.

OmniPod's relative stability in the market would make me less nervous, and they do contract with our insurer. We'd still have to pay to switch, since our warranty will be Medtronic's until 2021. But all of that's irrelevant since my kid doesn't like the idea of wearing something as big as a pod on her body and so she will not consider Omnipod, no matter what other features it may offer. It's the only option we've ever had real conversations about switching to, and the answer has always been the same. She likes the potential for invisibility a tubed pump offers. She's concerned not just about the obviousness of the pod, but also the awkwardness under clothing, knocking it off walking through doors, and how it would feel to sleep on it, all of which people get used to but which is still no small concern.

Theoretically we could also include multiple daily injections in the list of options. Or rigging up our own system #wearenotwaiting style. These are not, however, part of our family's conversation.

So, while we have at least the illusion of a choice here, I'm not sure it's much more than that. Financially, Medtronic makes sense. In terms of long-term corporate stability, they also seem like our safest bet. Their product feels the most similar to what we're using now. And in terms of leading the charge towards the artificial pancreas? They're in the front of the race so far.

When we ordered our Animas earlier this year, there were rumors the company might not make it. We certainly knew they weren't likely to release the next big technological innovation. But our warranty was up, and there was nothing compelling enough about what was on the market last winter  to convince us to switch to a new system. We stuck with what we knew, knowing that in 2021 we'd likely be jumping ship to join whatever company was closest to an artificial pancreas by then.

We're going to be thrown overboard instead, and for now it looks like our most viable life raft is Medtronic. We'll hold onto our tried and true Animas as long as we can but we can't go down with the ship, so change is coming whether we like it or not.

Animas No Mas

I poured my second cup of coffee this morning and opened Facebook.  There were pictures of a friend's new kittens and links to political commentary. And then this:

As the parent of a person who will, on Saturday, have been infusing insulin via an Animas pump for exactly 13 years, I have layers of concerns which range from the personal to the way this company's closure shapes the marketplace.

Today we'll begin at the beginning and consider the announcement itself. I learned the news on Facebook. Because I follow 'Children With Diabetes.' They posted a link to an undated, legalese-y notice posted on Animas' website.

We, as I mentioned, have been this company's customers for 13 years. Animas has our email, phone numbers and home address. We have not yet been directly notified in any way. Johnson & Johnson is a huge company. Surely they have a communications arm which could have handled this better? Direct mail timed to arrive today? A call or even a robo-call? Even something as simple as emailing the notice currently on their website. Not only does this feel unprofessional it feels a little like a bad teenage break up... Maybe if I tell enough people I'm gonna break up with her somebody'll put it on Instagram and I won't have to tell her.

Animas' notice includes the following cryptic lines for people in our family's particular situation:  If you are on a pump with a warranty that expires on or after September 30, 2019, you or your pump supplier will be contacted by a member of the Medtronic transition team concerning the option to transfer to a Medtronic 630G insulin delivery system at no cost. This sentence left me with more questions than I had to begin with.

Medtronic, it seems, has a better communications team. I found a link on Twitter to a clearer, kinder explanation. There was a nice line acknowledging that the transition will be "tough." There was also a very well laid out timeline chart which reassured me that customer support will continue to be provided for in-warranty Animas pumps through September 2019 and that we'll be contacted that May to discuss switching over.

But, according to the tiny bit of information I've gleaned so far, we'll be required to switch to Medtronic since we got a brand new Animas Ping system in March of this year, with a 4 year warranty.

Not only have we been broken up with terribly inconsiderately, we now have no choice over who to date next...

More on that next time.

 



What We Know

My daughter got a new pump a couple of weeks ago. It's her fourth Animas pump.

We know there are other options out there. The new Medtronic pump with it's built-in glucose-responsive CGM technology is by far the closest to the ultimate goal of a closed-loop system. The slim and durable Tandem has some nice user-friendly touchscreen and Bluetooth features. The tubeless Omnipod would be convenient with exercise clothes and on the beach.

We briefly considered all of the options.

In the end we decided not to undertake the challenge of learning to use a whole new insulin delivery system. We decided to stick with what we know.

 

My daughter has been attached to an Animas pump since fall 2004, 24 hours a day, seven days a week. It's as close to a part of her body as an electronic device can be. Replacing it with a new brand of pump would, we think, require an extraordinary amount of learning, thinking and adjustment. Which seems unnecessary since we're perfectly happy with the results we've had.

 

We use several of Animas' unique features to our advantage. My kid has very low basal rates during certain parts of the day, so the tiny basal adjustment increments the pump offers are great for really fine-tuning her doses. The meter remote is a huge quality-of-life feature because it allows my daughter to program a bolus without extracting her pump from underneath a dress or a marching band uniform.  We have a good feel for the current insulin-on-board set-up, and for how the bolus calculator takes her blood sugar into account so that we can easily factor that knowledge into dosing decisions. We've rarely had problems with our pumps but when we have, we've consistently had good experiences with Animas' customer service department. After 12 years of the same pump I'm able to do site changes, battery swaps, and cartridge changes under almost any circumstances. My kid can program a bolus and have a conversation or keep an eye on the baseball game at the same time. Using this pump has become second nature.

 

In four years, or maybe sooner, our decision making process may be different. There could be some amazing new technology on the market by then, like an honest-to-goodness artificial pancreas or at least something much, much closer than the current options. For that we would certainly switch brands and learn something completely new. Until then we'll stick with what we know.

New and Sparkly

We fired up my daughter's new insulin pump over the weekend.

Our four year warranty was up and, while the pump still worked, its appearance led us to believe it might be living on borrowed time:

The screen protector was peeling off.

And so was the paint.

It was still effectively giving insulin, but the idea of having no warranty was making us nervous.










We've had very few issues with Animas pumps over the past 12 years, but when we have, having one under warranty has unfailingly led to an overnight replacement.

That's hugely reassuring, especially considering how long it took to order a new one from scratch.






Granted this wasn't an emergency since my daughter's pump was still perfectly operational, but it took about six weeks between my first call to inquire about a replacement and its arrival on our doorstep. The process began with two different phone calls with questions for me, then doctor's orders, insurance authorization (which was the longest process), another phone call to discuss our copayment and the shipping details, and then actually getting it shipped out.

The possibility of reverting to multiple daily injections for even a fraction of that time is not appealing to us.

The new pump is silver, and sparkly all over, with no chipped paint. The screen protector is intact and clean.

And we expect to have a reliable source of insulin delivery for four more years.

 

 

Worried

This whole UnitedHealthcare/Medtronic thing has put me through a string of emotions this week.  Disbelief and anger batted leadoff.  Determination followed, with a string of advocacy actions which are still ongoing.  Sadness made an appearance along with despair.  Now, the more I think about it, the more worried I get.

I'm worried on a personal level, as a UHC customer, that my kid will lose coverage for the tools she uses all day every day to manage her diabetes.  Pediatric patients are currently exempt but there's no guarantee they always will be.  I've also heard she's likely to turn 18 sooner that I'd like, and then she'll be required to switch. Then what happens?  Do we fight for an exemption?  Do we (could we afford to?) pay to go out of network?  Do we bite the bullet and learn a whole new system and try to make it work for her?  Diabetes is hard enough without having to do any of these things.  Would her blood sugar control suffer as a result?  Even if eventually we learned a new system, it would take a while and the learning curve would inevitably impact her blood sugar numbers.

I'm worried that this is just the first of the surprises in store for us.  Why not make us use another brand of CGM?  Why should they allow us to go to a doctor across the border in another state when there's one just down the street who is, on paper, exactly the same?  Does she really need to test 8-10 times per day?  Surely not...5 or 6 strips per day should be plenty.  Lab work again so soon?  Nah- just get it done once a year no matter the results. 

I'm worried because this decision represents another big step in the elimination of healthcare choices for patients and their doctors.  UnitedHealthcare is a huge insurer.  They can't be the only one going down this road when it comes to durable medical equipment.  Companies have already been down this road for pharmacy benefits, physician choices and more. Wherever we turn for insurance our choices will become increasingly limited.  And for those without the means to go out of network or pay a higher copay for a different doctor, tier of drug, or medical product, choices are disappearing entirely.

I'm worried about the 'big brother' language in the information about this agreement.  “UnitedHealthcare and Medtronic are working together to better serve people with diabetes by combining their collective resources, data and expertise," an e-mail statement from United Healthcare's corporate communications spokeswoman, as quoted in a Diabetes Mine overview of the situation reads. "This will include assessing how the combination of advanced technologies and patient support programs can improve care plans for individuals using insulin pumps... we aspire to bring a value-based approach to diabetes care that tracks clinical outcomes for UnitedHealthcare members on insulin pumps and places greater focus on quality rather than the volume of care delivered." My insurance company wants to track my child's 'clinical outcomes' to improve her 'care plan?'  Maybe we don't need to go to the doctor at all then.  See also: privacy, numbers don't tell the whole story, I thought giving consent to be part of a study was an ethical mandate, and maybe if she could choose the best tools for her those outcomes would be better and we wouldn't have to improve her care plan.

And what about innovation?  I'm worried that if there's no competition for customers, because customers don't have a choice, companies won't invest in research and development.  Until Tuesday we were keeping our eye on Tandem.  We were interested in the pump and in any technology they might develop in conjunction with Dexcom.  We're not due for an upgrade anytime soon, so these were fleeting thoughts. But the speed at which so many companies seemed to be innovating made us very interested in seriously investigating, and talking with our endo about, a variety of  products when the time came.  Now it looks like we're stuck with Medtronic who, since we don't have a choice, can provide whatever products it chooses and innovate at whatever speed it chooses.

I'm worried, in what is now broadening out to a philosophical way, about the state of the healthcare system in our country.  How, in what's billed as the most technologically advanced nation in the world, are people stuck with no choice in the technology they can use?  How, in a free market economy, can we accept losing the freedom to choose our own products?  How, in a nation of checks and balances, have we gotten to the point where giant corporations have control over our personal health? 

I'm worried.

I was grateful last night to have
chosen this technology, when I was able to use the
meter remote to deliver a correction bolus
to my sleeping child from across the room.

Dear United Healthcare

Dear United Healthcare,

You have been our family's insurance provider for the past 10 years.  I have repeatedly sung your praises regarding the coverage you provide for my daughter's diabetes supplies.  Our coinsurance costs are minimal compared to what so many other people pay out of pocket.  We've had choices of insulin, glucometers, equipment companies and medical providers.  We've appreciated that. These choices have allowed my daughter to thrive and to manage her diabetes at the same time.

Today I learned that beginning this summer you will only contract with one insulin pump company.  It is not the company we've been getting insulin pumps from since my daughter was 2.  It is not the company we chose after exhaustive research with our health care providers.  It is not the pump the endocrinology team recommended because its insulin delivery format was different from others and therefore a better fit for the patient.  It is not the product we use because we find its features make diabetes as easy to manage as possible.  It's not the tool we have spent 12 years learning to use as a substitute for my daughter's pancreas.

Diabetes management is a unique process. Every person using a pump is using it differently.  People deliver different doses when they eat or correct high blood sugars.  People program different basal rates based on a whole host of physiological and personal factors.  People use pump features, many of which are very different in different brands of pumps, to tweak those doses and basal rates based on their very unique personal needs.  Changing access to features people use to manage their disease well will, logically, lead to them managing it less well.

I'm grateful to hear that this new rule will not (yet, at least) apply to pediatric patients.  I also understand that you will provide exceptions to the rule should a physician certify a particular pump as medically necessary.  Yet the reality is that most of your customers will no longer be able to choose the tool they are most comfortable using all day every day to keep themselves both alive and healthy.

I've always assumed that the good coverage you've given for diabetes care in the past came not from a place of benevolence but from an understanding that giving the patient the best tools to manage diabetes at home leads to fewer hospitalizations and fewer larger long-term health issues.  I hope this is not the first of other roadblocks you intend to put in the path of patients who are thriving with the tools they have.  With less effective tools people will, logically, manage diabetes less effectively. That seems like a big price to pay for short-term financial gain.  For the benefit of all of your customers with diabetes, please reconsider your agreement with Medtronic and the philosophy behind it.


Sincerely,

Your Previously Happy Customer

We love the tiny basal increments, the meter- remote feature,
the way the temp basal works, the customer service,
 that it's waterproof, and that we're so
 familiar with it now that we can use it in the dark.
  Please don't take it away.



Out of the Midst of Chaos

Last night was much like many recent nights around here.  I thought I was finishing up dinner prep and that I had about 20 minutes to relax before I had to be back in the kitchen cooking. And then:

"Mom, it's site change night."

And simultaneously I realized that one element of dinner remained unpeeled, despite that step being necessary for edibility.

So a game plan was concocted on the fly.

"Why don't you bring the insulin and the cartridge out here and fill it.  I know you know how but you rarely do it- it'll be good practice.  And I'll talk you through it while I peel these."

So she did it.  I've been filling the cartridges for so long that watching her struggle with this task which seemingly requires 3 hands was eye opening.  But she figured it out.

I wonder if this is how someone taught me to do this or if I made it up?

Then, we retreated to her room to do the other half of the job.  I am still the primary site putter-inner.  But then:

"Should I try to do it?  In my hip I mean?"

Her voice was filled with cautious excitement laced with apprehension.  I heard self-confidence and self-doubt all at once.

"Of course you should."

Then came the string of questions and worries.  "What if I mess up?"  "What if the tape gets all folded up and I can't get it to lay down right?"  "What if I can't see well enough what I'm doing?"  And on and on. 

"I think you can do it," I said more times than I can count.

"Get Ruby.  I need her here," requested the 14 year old.  So the bear with diabetes was fetched from the basket of dolls, webkinz and teddy bears in the corner of her room. 

With the inserter in one hand, her torso and head twisted at an extremely awkward angle, and the ear of her Ruby squeezed in the other hand she eventually squeezed the device and inserted the site.

Insert two smiles of pride here.

I know some kids are regularly inserting their own sites at 8.  I know that some parents push the issue long before 14. 

Neither of these were true for us.  And I was okay with that. 

She'd put in a handful of sites in her leg, out of wanting to prove she could do it, and once out of necessity.  But the leg turned out not to be a preferred site spot, and her 'rear hip,' shall we say, did.  It was awkward to try to do by herself and so I let it go. 

Our endocrinologist was beginning to ask when she was going to take over the job.  I was a little embarrassed to share with other d-people we know that this step hadn't been taken. But I knew the day would come.  And I knew my kid.  And I knew that I couldn't make that day come no matter what I said or did or suggested or threatened or bribed. 

But then it did. 

So Easy

 

 

There's nothing easy about living with diabetes. 

 

We live with a Mobius strip of a to-do list.

 

The required tasks involve varying degrees of difficulty and frustration.

 

So every time the pump battery needs to be changed, I smile.

 

Someone at Animas took the time to make this particular chore as easy as it could possibly be.

 

If only all of our electronic devices came with an almost life-sized pictograph complete with the type of battery printed on it. 

 

 

Two-fer

Over the past month or so, my daughter's pump screen has been getting progressively dimmer.  At first, I thought I was experiencing yet another symptom of being 40-something.  But soon my daughter was complaining about it too.  Procrastinator that I am, I figured I'd find the time to call eventually.  The final straw was when the screen got to the point where we barely see it outdoors.  I called Animas on a Friday afternoon.

"We'll overnight you a new pump," the technical support person told me after a couple of her suggested quick-fix tricks were unsuccessful.

The pump arrived by 9:30 on Saturday morning.  I carefully transferred all of the settings from the old pump to the new one, double and triple checking my work like my third grade math teacher always insisted.  The last step was to pair our current meter remote with the new pump. I successfully paired the two up, with their screens showing each other's serial numbers, seemingly as a mark of true love.

Fast forward to lunch.  "What's going on?  Why won't this work???" my daughter grumbled as I washed the grapes.  "When I put the strip in, I get the timer thing-y and then the screen turns black and then the thing just turns off."

We took the batteries out and put them back in again, and tried a different vial of test strips.  We could power it on to check the history but once a test strip was put in, it shut down.

After lunch (don't fret- we have an extra meter or two kicking around- she was perfectly safe), I called and explained the situation to a person at Animas with the title, "meter specialist."  The meter remote would have to be replaced too. "Will not accept the test strip," was the specialist's official diagnosis.  I think it was broken-hearted at the disappearance of it's old pump partner myself, but the guy at Animas is the expert of course.  Meters being apparently less important than pumps, I was told the replacement meter was to come on Tuesday, signature required.  I tried to negotiate this detail since the (significantly more important and expensive) pump did not require my signature, but it seemed there was no choice.

"Put a black x on the back of the meter before you return it," the meter specialist requested.
Should we have held some sort of service of remembrance while we did so?

Tuesday came and we were more excited than we expected to be.  We missed the remote features, particularly at night if a correction was needed.  Rolling a sleeping 14 year old over in bed to find her insulin pump was no easy task.  Noon came and went- no meter.  My daughter came home from school at 3:15.  "Did the meter come?"  Nope.  At 5:30, I called Animas.

"It shipped and my tracking number shows it's out for delivery.  Let me give you the number too.  It should come tonight."

My husband came home, we ate dinner, and soon it was 8:15.  No meter. He called UPS with the tracking number.

"I'm showing it's on a truck and the truck is still out. Our days are already running long because of holiday shopping."

"I understand that," my husband said, "but this is a medical device for a child who is eventually going to bed...I'd like it to be here before that happens."  The UPS customer service person could offer nothing more than sympathy.

My daughter climbed into bed around 9:30 with her book.  At 9:45 (AT NIGHT.  PM.) the doorbell rang and my husband signed for the meter I'd been at home waiting for since 8 a.m. and which, according to the UPS tracking system had been on the truck since 4:30 a.m.  We set up the meter and paired it with the pump. They've gotten along splendidly ever since.

I hope, at least, that the previous pump and meter were reunited and that they will be laid to rest together.

Tetherball

A couple of weeks ago, my daughter found herself explaining the need to keep her pump attached somewhere under her costume for the school musical.  It brought to mind this post from a few years ago:

My daughter had a softball “workout” a couple of weeks ago.  All of the girls playing this spring were summoned to demonstrate their skills at batting, catching pop-ups, and fielding  grounders.  Groups of 5 at a time entered the gym to be evaluated by at least that many adults.  Based on their skills, the girls were sorted into evenly-matched  teams. 

Fielding grounders is my daughter’s best skill.  She can hit when she gets in a groove, but given the amount of snow on the ground, she hasn’t swung a bat since October sometime.  And she’ll readily admit that she can’t catch a pop-up beach ball, let alone softball.  So she was excited to demonstrate her infield skills. 

I was not allowed in the room, but as she tells the story, here’s what happened:

Someone bounced a grounder to her.  She was ready, leaned down, and got it.  Then her pump fell out of her pocket.  She threw to first, grabbed the pump and stuffed it deeper in the pocket of her sweats.  From behind her, comes the coach’s voice.  “Can I hold that for you?” 

Diabetes has been part of my daughter’s life since she was 13 months old.  And it’s always been interesting to watch how she responds to people responding to it.  She tends to be very matter-of-fact about the whole thing, and is developing an increasing vocabulary to answer questions and to respond to potentially awkward situations.

“Um…well…actually, it’s attached to me.  So I don’t think that would work too well, but thank you.”

I couldn’t have said it better.  

Of course, on the way home, we became hysterical envisioning her fielding grounders while the coach tried to hold the pump. 

Tetherball, anyone?

Waste Not, Want Not

GOOD TO THE LAST DROP

We don't usually get down to the actual last drop, but this is what the pump screen looked like when my daughter got home from school yesterday.

When she started pumping (at 3), I put about 40 units in the cartridge with each site change.  We're up to 100 now and it looks like we need a little more.

Although maybe when Christmas cookie season has passed she'll be less likely to come home running on fumes.

All Out

Last week was a hectic one.  After returning Monday from an extra-long weekend with family on my husband's side, I got right back into the business of helping my dad pack up his house.  He moved from house to condo on Friday. 

In the midst of the packing and moving, unpacking and organizing, there was still school and homework, piano and volleyball, the orthodontist and a weird fast-moving stomach bug, plus a Friday night school social. It was a fast-paced week.

My dad's new little dining set was delivered at 11 on Saturday morning, completing the string of deliveries and installations. My husband, daughter and I were there helping unpack boxes and screw in paper towel dispensers.  We'd brought sandwich stuff with us and by noon we decided to christen the new table. Happily ready for lunch, my daughter entered her carbs into her pump, scrolled up to a dose, and hit 'go.'

Fur Elise played merrily from the pump.  "No delivery.  Pump is busy."  (Which I've always thought was a weird phrase to program it to say...busy doing what, exactly?)

In this case, it was busy preparing to tell us the bad news:  "Empty Cartridge.  No delivery." Oh. Oops. In retrospect she remembered the low cartridge alarm going off overnight but didn't think of it again in the morning.  In retrospect I remembered thinking when I changed the site Tuesday night that if Friday was as chaotic as I imagined it would be we might have to put off site change until first thing Saturday morning before we went to help unpack.  That was the last I thought of it.

Fortunately, Dad's condo is only three and a half miles from our house.  My husband was kind enough to make the insulin run and within half an hour, my daughter was eating lunch.

We had a good run.  This is the first time my daughter has run out of insulin since she stopped making her own in 2002.  But as summer day-trip season approaches, it led me to re-evaluate what we carry with us when we're out.  For a trip within a few miles, like this one, I'll probably still not bother carrying insulin, but we've gotten lazy about bringing it with us when we're headed places farther afield for the day.  What if we'd been an hour away at the beach or at a museum?  This could have ruined a whole day, rather than just delaying a much needed lunch.  

So I've ordered a Frio insulin cooling case to add to the collection of things we bring when we go out.

Choose your closing saying below:

All's well that ends well.  Live and learn.  Better safe than sorry.  Be prepared.