Insurance of the Year Club

We're switching insurance again.

Of all the employer-sponsored insurance plans offered for 2019, our current plan will now be three thousand dollars more expensive for the year than the least expensive one. The cheapest of the three, of course, is the one we've never had. We will sign up for what the company calls a 'gold plan,' and the system is tiered so that all insurers in the gold plan cover similar medical services, charge the same copays and have the same deductibles. The gold plan's coverage fits our high medical use and costs, and so is our best choice. But the per-paycheck cost is staggeringly different for each plan.

We did our homework, which was easier this year after lots of practice last year. The new insurer will cover all of our current doctors and drugs (though still not Novolog which stinks). It's possible we'll be able to escape Edgepark's grip since other DME providers are listed, but I'm not holding my breath since they are still one of the options. And while I generally subscribe to the adage, 'the devil you know is better than the devil you don't know,' $3000 is a lot of money.

The big risk, the one we can't get a clear answer on, is whether there will be hoops we have to jump through to get coverage for diabetes-related equipment. We delved pretty deep into the new insurer's website and made phone calls to learn about diabetes coverage and could not come away with a clear answer on whether we'd have to prove my daughter's need for an insulin pump and CGM before coverage is granted. Between reading and conversations, the possible answers range from 'you might need a letter of medical necessity from your doctor' (which is pretty standard), to needing to submit tons of documentation, to maybe they don't cover CGM unless it's some sort of dire situation.

I'm well aware that we're incredibly fortunate that we have access to insurance at all. That we've consistently had access to really good insurance, which for the most part covered what we needed with little to no hassle, is unusual. Maybe that's about to change, but after 16 years at this, I'm prepared to use every tool I now have up my sleeve to fight for what my daughter needs. Hopefully we'll repurpose that $3000 wisely. If need be we'll spend it on things that aren't covered. Or on a little getaway to help me recover from a year of insurance fights.

Back to Insulin One

A change in insurance has led to a change in insulin.

We've used up our stash of Novolog, and the first cartridge of Humalog in several years went in the pump 3 days before back to school.

Some people say they experience no difference at all between the two insulins. Some think Novolog withstands heat better. Maybe Humalog sticks around in the system longer. Humalog could be more likely to clog infusion sets. We switched to Novolog a few years ago because it was reported to kick in just a little bit faster. Some of the differences are detailed here, on T1D Living.

The key difference to us is that insurance will pay for Humalog now, and it won't pay for Novolog anymore.

There are too many variables here for this switch to serve as a scientific experiment. The change coincided with an already established need to make some pump setting adjustments. It also coincided with back-to-school, and with the hamster wheel which is marching band season. A couple of things do seem obviously different, despite the chaos.

What we've noticed for sure is a greater need to pre-bolus breakfast. That aspect feels familiar to me from our switch from Humalog to Novolog a few years ago. Breakfast, after which my daughter's bg had spiked significantly almost every day since diagnosis, became more manageable with Novolog. The Humalog is a little more sluggish.

I'd also agree that Humalog sticks around a little longer. It's hard to see during the day, but I'm noticing that the Dexcom graph's downward slope continues longer on the last-before-bed bolus, or for any overnight corrections.

Because we're changing basal rates anyway, based both on feedback from our last endo appointment, and on the schedule changes from the start of school, it's hard to tell what other differences there are. It won't be until we finish tweaking that we can see, for example, if the total daily dose went up.

Given my druthers, I'd say Novolog is probably a snappier variety of insulin, and that it would be nice to go back. But in accounting for Humalog's more sluggish nature we're making adjustments that are working.

Humalog and NPH were the first insulins prescribed when my daughter was diagnosed. The glass-half-full part of me will note that Humalog's challenges are minor and manageable compared to the nightmare that was NPH.

The Edgpark Order that Won't Die

We placed our initial Edgepark order in March. The details of that ordeal are here, if you'd like to read the beginning of this story.

I returned two of the three items in that shipment on April 11th, using the return label sent to me by Edgepark, because they were not items my daughter uses, nor were they the items prescribed.

I subsequently received a bill for the Verio Test strips I'd returned. When I called, the representative said to disregard the bill. Edgepark was in the process of 'billing the return' with our insurance.

Ignore it I did, along with a couple of subsequent, identical bills I received in quick succession.

Mid-summer, after another bill, I called and was told again to disregard it.

Fast forward to the beginning of this month. I placed an order for a new Dexcom G6 system.

I then received an email telling me I had an outstanding bill. I called and was told once again to disregard it.

Two weeks later, I followed up, since there'd been no word on the G6. They'd just processed the order with the doctor's prescription, I was told, and it would be shipping from the Ohio warehouse within 24 hours. It would be at my house by Friday via FedEx. It was very specific information.

I then received another bill, for a higher amount than the previous ones, and a subsequent email warning me that no further orders would ship until I had resolved my delinquent account with the Edgepark billing department.

So I called. Yes, I was told, they had 'billed the return' and refunded my account $63.60 for the test strips. I acknowledged that as a good start, but then noted that I had paid them $288, and that they were now sending me bills for over $400. It was an unproductive conversation which ended in the representative telling me she was sending March's whole order and subsequent billing back for a 'full review.'

So, did that mean my upcoming order would be cleared to ship? "Oh- yes - that wouldn't have been on hold anyway."

Today, still no word on the Dexcom, so I went onto the patient portal to check the status. There were 'urgent alerts' posted warning me that no further orders could be processed until I paid my outstanding bill of what was now two hundred-something dollars.

An hour phone call, piles of explanation-of-benefits and bills reviewed, and lots of math later I agreed with the billing representative that the current number was correct. In (very) short, the original billing on the one item I did keep (Dexcom G4 sensors) was also incorrect, not in my favor, and that error was reflected on a subsequent explanation of benefits in July. After the whole day's bills were sent back for review, my account was credited with the rest of the Verio money Edgepark owed me, in order to pay for part of the cost of the Dexcom sensors. I still owed the balance for those supplies.

I paid the bill then and there on the phone.

My daughter's Dexcom G6, the third person in so many weeks told me, is on its way. She's, once again, really looking forward to getting it. It seems highly unlikely to me that there isn't at least one more phone call involved in this. And then, of course, the next set of bills...

Stay tuned.

And if you have a choice to get supplies from someone other than Edgepark, do.

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.

Ye Olde Pharmacy Days

Fifteen years ago, when my daughter was first diagnosed with diabetes, we were given a handful of paper prescriptions. I drove to the local pharmacy near our house which, conveniently, doubled as a Hallmark store. I handed over the prescriptions and went home with two kinds of insulin, including one which had been diluted to make her baby-sized doses possible. I also went home with test strips, lancets, syringes and glucagon. At regular intervals I returned to the pharmacy, paid a reasonable copay, and received more supplies. Sometimes I was also able to pick up a birthday card or a baby gift while I was there.

It sounds like a fairy tale now. The only thing I still obtain at a brick-and-mortar pharmacy is insulin, and I fear those days are numbered.

I fail to understand how the current system could possibly be more cost-effective...or better in any other way for that matter.

The layers of bureaucracy which have been added in the interests of keeping costs down can't really be doing so, can they?

Our endocrinology office now has staff members who answer the office's 'prescription hotline,' speaking, emailing and faxing all day with patients, pharmacies and insurers.

Our health insurer now pays a third party case management company to manage our prescription and durable medical equipment (pump, dexcom, etc.) supply needs. That company then contacts the people at supply distribution companies who then process our order. Both the prescription case management company and the supply shipping company call, email and snail mail us, our insurer, and the aforementioned 'prescription hotline' people regularly with questions, updates and statements.

Then FedEx, UPS or the USPS is paid to deliver our supplies. They're also paid to return wrong orders, or malfunctioning equipment.

How does any bulk purchasing discount not get balanced out by all of these additional expenses?

It's also definitely less efficient, taking days if not weeks to fill prescriptions when it used to be possible to pick it all up on the way home. Or, at worst, kill the 20 minute wait picking out a birthday card or browsing the toy department.

And the room for error has increased exponentially. When I pick up a prescription from CVS, I peek in the bag before I walk away from the counter. If there's a problem it's fixed immediately. Meanwhile, our initial order from Edgepark, containing 2 wrong items, required 3 phone calls, a 48 hour wait for a replacement items, a 2 week wait for a return label, and a trip to the post office. And I'm not sure the billing is straightened out yet.

There's so much wrong with the current healthcare marketplace that this is just the tip of the iceberg. At the same time it serves as a lens through which to view the layers of bureaucracy which are adding expense and frustration for all of the players in the healthcare system.

While it wasn't always convenient to go to the pharmacy, especially with a toddler in tow, it was most certainly better than the rigmarole we go through now.

It Shouldn't Be This Hard

I'm a good 4 weeks into my effort to secure my daughter's Dexcom sensors, test strips and lancets through our new insurance provider. I'm only a little closer than when I began.

I called the insurance company. Who said I had to use their home care case management company, Carecentrix. I talked with Carecentrix a few times more than should have been necessary. I did the job they assigned me: to ask my daughter's doctor's office send them prescriptions with very specific specifications. I was told that Carecentrix would then send my daughter's order to a company through which the supplies would be covered by my insurance. That assigned company would call me to make arrangements.

I received a call the next day from a supply company. The conversation ended with the very nice representative saying this:

"Well, ma'am, I understand you'd rather not switch to a new brand of meter. If you want to continue using the one touch strips...and it sounds like you do...I'm going to suggest you call Carecentrix back and ask for them to assign you a new supply company. I'm sorry I couldn't be of more help to you today."

A couple more phone conversations with Carecentrix, and I was told our supplies would be coming from Edgepark. "They'll call you in the next couple of days." Which they didn't.

When I called Edgepark they had my daughter's name in the system and the list of items requested which was more than I had hoped for. They did not have the correct insurance company, and they had my 16 year old daughter as the primary policy holder. Once that was settled, my phone call was transferred to someone else to 'confirm that the order was underway.'

"Next," I was told, "we have to verify your benefits, and then we will reach out to your provider for the prescriptions." Apparently neither the referral from Carecentrix nor the prescriptions that came along with it were good enough. "We have to fax your doctor paperwork and they have to fax it back with very specific information. It all has to be done on Edgepark letterhead, ma'am."

I asked, in as many ways as I could think of, if there was anything else they needed from me. No, I was told. New orders take up to 10 days to ship, and ours should be on the way within that timeframe.

A recorded telephone call the next day told me that Edgepark needed additional information to process my order. They needed me to call them as soon as possible. After 20 minutes on hold I was told they needed a 'valid method of payment,' which I provided. I was told, once again, that there was nothing else they needed from me.

I received two recorded updates, one that the order had been processed, and then an exciting one that the order would arrive "within one business day."

The next afternoon there was a box on my doorstep!

It contained Dexcom sensors, test strips and lancets:

On the plus side, the Dexcom sensors are exactly what we needed. And, if there's a silver lining, the item we needed most urgently. The test strips and lancets, on the other hand, are being returned. Edgepark, I was told when I called to complain, doesn't carry the variety of lancets my daughter uses. The correct test strips are, allegedly, in the mail.

Choosing New Health Insurance

We have spent hours this month investigating our health insurance options.

Since my husband began working at his current company 12 years ago we've had the same insurance. Until now, his company contracted with one insurance company, offering 3-4 plan levels each year. When he began employment there, we chose a plan with a lower deductible, lower coinsurance costs and a lower out-of-pocket maximum. And, of course, a higher monthly price. The per paycheck cost and copays went up a few times, but the coverage remained essentially the same. We glanced at open enrollment paperwork every year, but never considered changing.

This year the company rolled out a completely new system, with choices!!! There are now plans available from 3 different insurance companies, so that, including the various levels of coverage, there were a total of 15 options to consider. Fifteen.

The idea is that each contracted insurance company offers 3-4 levels of plans. The levels are equivalent across insurers. so, for example, the 'gold plan' from each insurance company includes a $20 primary care visit copay, 80% coverage for hospitalization, and $8 monthly copays for tier 1 medicines.

Speaking of pharmacy benefits, also new is that those will now be through the health insurer we choose. For several years now, the employer has contracted with Caremark for drug benefits instead of them coming through the health insurer. And the coverage was excellent. Now we have to factor coverage for insulin, test strips, and other family members' medicines into the health insurance choice.

Our initial instinct was to look into the plans from our current insurer. The devil you know is better than the devil you don't, right? There's a plan with coverage similar to what we have now. We double checked some things, like making sure the deductible was about the same and that the coverage for pump supplies seemed equivalent. We knew our physicians probably participated but we double checked the key ones to be sure they were in this particular plan. Things looked good.

Problem was: that particular 'gold' plan costs about $5000 more per year than one offered through a different insurance company. For a few hundred or so per year I might have stuck with my 'devil you know...' philosophy and bit the bullet. For $5000 we were back to the drawing board.

And it looks like we're rolling the dice and trying a new insurance company this year.

Our doctors all participate. We'll pay more for insulin and supplies, but not anywhere near $5000 more. Humalog is the insulin of choice, with our current Novolog not covered on any tier of the formulary.  I'm worried that I'm unfamiliar with the culture and mechanics of this company, diabetes-wise, and that there will be unpleasant surprises. There will be lots of things to try to get covered this year, with an inevitable switch away from Animas supplies and a possible switch in CGM sensors as well.

But on paper it looks reasonable enough to try in order to save thousands of dollars. I'll let you know how it goes...

A Letter

We received a letter in the mail the other day about a health insurance claim.

"The claim is on hold. It's important that we hear back from you within 45 days or we may not be able to process the claim," the letter read. Before this particular claim could be processed, our insurance company needed to know if my daughter was covered by any other health insurance plans.

I assumed that this claim was for insulin pump supplies or Dexcom sensors; for some very expensive diabetes-related claim.  Those seemed like the types of things which would suddenly flag her file requiring a double-check that nobody else might be in the position to foot the bill.

Nope. The big bill flagged for possible nonpayment? My daughter's flu shot.

I had a surprisingly quick phone "conversation" with an automated computer lady during which I was able confirm with her (it?) that my daughter has no other health insurance coverage. Now her five minute visit for a basic flu shot will be covered.

Presumably so will the next round of very expensive diabetes supplies.



It's November...Diabetes Awareness Month! My plan for this month involves stories. Simple, everyday, real-life stories about living with diabetes. I plan to tell them here as narratives, like this one, just snippets of a day with diabetes, and I plan to tell them, or stories like them, more often in the 'real world' this month when friends ask, 'How's it going,' or relatives ask what I've been up to.  

Getting Our Money's Worth

It's Day 2 of Diabetes Blog Week! Today's topic is: Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

I'm grateful that our family is able to secure what most in this country would consider 'good' health insurance through an employer and that we're able to afford what are still extraordinarily expensive premiums, deductibles and copays. There are so many people who are unable to afford care which would allow them to live...let alone live well...with diabetes. Having access to quality diabetes care is not, in this country, in this day and age, something to take for granted. Instead, both because it's not guaranteed and because we pay dearly for it is, for us, a precious resource which should be used wisely in lots of ways, including these:

We prepare well for, and take full advantage of visits to the endocrinologist. Our copay to visit a specialist is $50- no small price.  We choose our specialists carefully, and if we're not happy we don't go back, just like we wouldn't return to a restaurant that served a sub-par $50 meal. Fortunately, after some trial and error, we found a great endo years ago. In the days leading up to the appointment, we talk as a family about what problems we're hoping to get solutions to and what questions we need answered. Once we're there, we give the 20-30 minute conversation all of our energy and focus. We take notes, and when we get home we implement the suggestions.

We also choose and purchase our diabetes equipment carefully. We pay a 20-30% copay for pump and CGM supplies. So we do our homework there too, extensively researching options. Then we talk with the doctor to choose the best insulin delivery and glucose monitoring methods for my child's particular needs. Over the course of many years I have managed to stockpile some extra pump and CGM supplies in case there is a lapse in our insurance or in our ability to pay that 20-30% copay.

We find opportunities to save money on supplies when it's reasonable to do so. We recently had the choice whether to pay full price for Lantus to keep in the fridge- and hopefully never use- for pump failure, or to receive a different long-acting insulin for no copay at all. That was a no brainer. We chose last year to stick with the longer-lasting transmitters and sensors of the Dexcom G4 instead of upgrading to the G5 which would cost us more in maintenance supplies. On a much smaller scale, I stock up during juice box sales and buy out the Smarties post-Halloween.

Despite the alarming annual tally of medical costs I compile each year for the income tax file, we are among the fortunate ones. Those costs don't preclude our ability to pay for housing, groceries, or even annual family vacations. So when there are unneeded supplies in the closet, or a charitable organization to support, we try to help those who are unable to afford the costs of diabetes. We've donated test strips and meters to Insulin for Life. We participate in an annual JDRF walk. We share information on social media about local organizations willing to take and redistribute unexpired diabetes supplies. We write letters and make phone calls to government representatives, insurance companies, and medical companies.

We do what we can to use our resources wisely and to help and advocate for those who don't have adequate resources to use.

More Diabetes Blog Week posts on the cost of diabetes can be found by clicking here.

The Insulin is Insulin Conversations

At last month's endo appointment we needed just one prescription: Lantus to have on hand in case of pump failure.  Our doctor sent the Lantus prescription directly to our local CVS through the diabetes center's online ordering system, just as he's done every time our emergency vial has expired.

By the time we got home there was a voice mail from a pharmacist. The Lantus was no longer covered by our insurance. I needed to return the call to talk about next steps.

When I called back, a pharmacist walked me through possible substitutions. I explained that I wasn't terribly picky as long as there was something in the fridge which would keep my kid alive for a day or two until a new pump arrived. We decided that whatever the doctor ordered to substitute would be fine with me and that if there were choices I'd take the one with the lowest copay.

We left for spring break the next day expecting a voice mail upon our return telling us that the prescription was ready for pickup. There wasn't one, so I called.

"Yes- I see that the Lantus wasn't covered but that the Novalog was picked up as a substitution."

"Um...no. The Novalog was a different prescription which we refilled around the same time. Novalog isn't a substitution for Lantus- they're different kinds of insulin. The pharmacist I spoke to was going to call the doctor to request an appropriate substitute."

"Oh- I'll give the message to the pharmacist so that he can call later today."

Two days later, still having received no notification that the prescription was ready, I called to follow up.

"Yes I see that the Lantus wasn't covered, but the Novalog was the substitute for the Lantus, right?"

"No. It wasn't. And also, that's not possible. They do different things."

Again, "I'll have the pharmacist call the doctor's office."

I responded with something only slightly nicer than, "Don't make me have to call you again."

Two days later I called again and was transferred to the actual pharmacist.

"We've been calling the doctor since yesterday afternoon and haven't been able to reach anyone."

"It's a huge clinic, not a private practice. That seems highly unusual."

"Yes, but it just rings and rings."

We verified that they had the correct number, which they did, and then the pharmacist asked if I would call instead.

So I did. I called the office, where I was quickly connected to someone who answers the 'prescription line.'

I recited my tale of woe and provided the necessary details about the pharmacy.

An hour or so later I received a call back from the diabetes center.

"Hi- I'm calling you back about the Lantus. You have the Novalog, right?"

"Yes- that's not the problem."

"So then what is it that you need?"

"An alternative for the Lantus."

"But you have the Novalog."

"Yes- and they're two different things...right?" I was right ... wasn't I? 

"We have the Novalog which is in my daughter's pump- the fast acting insulin she uses 24/7. Then we keep Lantus, the 24 hour insulin, on hand in case the pump fails."

"Well...yes. I don't know what the pharmacist was saying then. Let me call him back."

An hour or so later the woman from our doctor's office called back and said that doctor's orders for Basaglar insulin had been sent over to our CVS. I received confirmation of this new order through the office's online patient portal.

Another weekend passed with no news from CVS, so on Monday I called and inquired about the status of my daughter's Basaglar insulin order.

"Yes. We are working on that."

"You're working on it?"

"Yes. Well. Let me see if we have that in stock." There was a brief interlude of top volume static-y piano music and then, "Yes. I have it here. We will have it for you this afternoon."

And, believe it or not, they did. Except it was in the form of pens, which we've never used.






 

 

So now I have to call to get insulin pen needles.

 

Meanwhile, a quick google search tells me that if push comes to shove I can draw the insulin out of the pen with a regular syringe. Which is reassuring, since who knows how long the next step will take.

 

 

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.

 

 

Advocacy

I've shared with you my first New Years plan: spending more time with my fellow 'diabetes people.'  The second plan is much less fun, but in my opinion, unavoidable. I plan to spend more time advocating for people with diabetes. Phone calls, emails, tweets and more appear to be a necessary evil for the coming year.

I started today, thanking my representatives who support the parts of the Affordable Care Act which are important to me, and contacting some who do not. The ACA is not a perfect law, but eliminating it without a reasoned replacement would be a setback not just for people with diabetes but for those with all kinds of chronic and expensive diagnoses. Repeal of the ACA will not only impact people who've been able to buy insurance because of it, but also the greater majority of us with employer-sponsored insurance who've seen new benefits and protections through the law. This article explains those parts of the law in greater detail, including coverage regardless of preexisting conditions, coverage for preventative care and the elimination of annual and lifetime maximums.

My daughter is at the age where she's considering career choices. The existence of protections for her as someone with a pre-existing condition and who has high annual healthcare costs is important to us. We'd rather she not have to choose a career, and a job within that career, based primarily on whether she can obtain quality health insurance and be assured that her coverage will never lapse.

Are you concerned too? Here's an easy way to get in touch with your representatives:

http://diabetespac.org/

I'm certain this is only the beginning of my advocacy this year. At the rate insurance companies and prescription benefit managers are picking and choosing what's covered, it's likely I'll be in touch with them. We're fortunate to be in a great school district, but small conversations still need to be had from time to time.  Other political issues may arise locally or nationally which I feel require my voice- not just for my own child's benefit but for that of the whole diabetes community and beyond.

I'd Rather Get a Mani-Pedi

The Healthcare Experience - Thursday 5/19 Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

My daughter attended her 8th grade 'semiformal' dance last weekend.  As a treat, she and a few friends went after school the day before the dance to get  manicures and pedicures. She was there for an hour and half, had her feet and hands pampered, sat in a massage chair, ate a coffee flavored hard candy and came out feeling relaxed and good about herself.  The price was half that of the coinsurance we'll pay in a couple of weeks when we go to the endocrinologist, and that doesn't even factor in the cost of health insurance in general.

I realize that the endocrinologist has significantly more education, expertise and support staff than the women who work in the nail salon, but bear with me here. 

What if she'd arrived at the nail salon and there had been a dozen people in line ahead of her, forcing her to wait in an uncomfortable chair for an hour?  What if she sat down at the little table to have fingers done and after the seventh digit, the manicurist sent her home because she was out of time?  What if once her fingers were done she went over to the pedicure area and was told pedicures required a separate appointment time at this salon so that even though she thought she'd booked a combination package there was no way she could have one today?  What if once she'd chosen the perfect polish color to match her dress, she was told that color was not included in the price and that she'd have to purchase the entire bottle at an exorbitant fee in order to proceed? 

Are you catching my drift yet? The crux of my argument is this: if any of these scenarios happened at our local nail salon we'd go elsewhere and write a scathing Yelp review for good measure.  Yet in the healthcare marketplace we put up with so much.  Our choices are limited, and while we sometimes put up with issues at a mediocre medical practice in order to get good care from a provider we trust, we shouldn't have to.

Most of us are paying through the nose for diabetes care.  Shouldn't we get a friendly welcome? Shouldn't there be a comfortable chair (massage chair preferred but not required) during a short wait, and maybe a complimentary cup of tea or glass of water? Shouldn't we expect the visit to have a seamless flow from vitals to data download to face-to-face time with the doctor?  Shouldn't the provider look us in the eye and ask what diabetes issues we need to talk about?  Shouldn't our insurance cover the diabetes care and equipment we and our doctors believe to be most appropriate for our individual needs?  Shouldn't our face to face and phone conversations with diabetes care and supply providers leave us feeling like the customer is always right and always comes first?

It's a huge problem to which I wish I had a solution.  We've been proactive over the years in shopping around to find the best endocrinology practice we have access to based on our insurance and geography in any given era.  When it's possible, I advocate for access to what we need both on an individual level and on a larger scale.  Nevertheless, in annual copays alone, we're spending an extravagant vacation's worth of money each year for service we'd almost always rate poorly in the 'reviews' section on a given website, and which we'd often choose never to pay for again.  If we had a choice.

What do other people think about their healthcare experience?  Click here to find out!

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.



A Pharmacy Story

I called the pharmacy on Monday to refill prescriptions.  In a rare moment of organization I checked the Lantus we keep for emergencies and noticed that it had expired.  The automated system told me that the prescription itself had expired and I ended up speaking with a pharmacist.  She said they'd call the doctor's office for the Lantus. 

She then informed me that we could only get 4 vials of Novalog instead of the usual 6 for a three month supply.  She attempted to explain the situation.  The conversation became very convoluted and in order to end it I agreed to accept the 4 vials. An endo appointment is in our near future and I figured we'd start fresh with a new prescription then.

On Tuesday I stopped in to pick up my prescriptions.  I gave my daughter's name to the pharmacy tech, who knows me well.  "Are you looking for the Lantus?"

"Lantus and Novalog today," I replied.

"I see they're still waiting for a call back from the doctor for the Lantus.  The Novalog isn't in here at all." 

I smiled broadly and kindly, because what else was there to do, and said, "The Novalog's the one I really need."  She went to the other computer station to submit the refill, and came back over.

"It says you only have two vials left on the prescription."

"Hmm...yesterday I was told it was four." 

"I'm sorry...it looks like only two."

"Fine.  I can get a new prescription in a couple of weeks anyway.  I'll take the two and regroup next time."

So I waited, picking up a few additional items including what I figured was a much deserved Twix bar.

When my name was called, the original tech rang up my items and handed me a pharmacy bag with six (6?) vials of Novalog in it.  I tucked it in with the rest of my items and returned home to restock the butter compartment. 

Today's task is to call the pump supply company to reiterate my daughter's desire for blue sets instead of the pink which mysteriously reappeared in the most recent shipment.  Will the stars align twice in one week?

Health Care

Many people consider yesterday's Supreme Court decision an important event in American history.  It was a momentous example of the court grappling with whether major legislation was backed by constitutional law.  It showed the court struggling with ideology versus nuts and bolts legalities.  Precedents have now been set for other laws which may follow.  It could become a significant moment in the process of electing our next president. 

Ever since taking a course in law in high school, and more in college, I've been fascinated by the legal process.  I've followed cases which have ranged from O.J. to this health care issue in their content and scope.  The politics involved in this one make it all the more intriguing.  I read a lot about it, and found myself interested on the intellectual level in many aspects of the case.

This one held interest, though, outside of the intellectual realm. 

I have a child with a pre-existing condition.  My husband and I need to be able to provide her with medical care during her childhood.  When she reaches whatever magical age is considered adulthood, our legal responsibilities may end, but we will not cease to care about her.

A few years ago, my husband was laid off, and for the 8 long months he was between jobs, we paid through the nose (with money we couldn't really spare due to the whole 'laid off' part of the story) to continue our insurance.  We did this because if my child had required hospitalization, we could well have lost our house. We did this so that once a new job was secured, my child would not be denied health insurance. We did this because the cost of insulin, test strips, pump supplies and endocrinology visits is extraordinary.

The television, internet, and newspapers are buzzing with opinions today about the legal, political, and historical implications of yesterday's decision.  That's all important, and it's pretty interesting.

For me, though, the bottom line is that under this law, my daughter has a fighting chance to continue to have health insurance coverage throughout her life.  She won't be denied because she has diabetes, or charged ten times what her peers are charged.  She'll never encounter a lifetime cap on her costs causing her to have to start paying for all of her own medical care.  She'll be able to stay on our health care plan until she lands on her feet (she'll land on her feet by 26, right?).  She will be able to afford insurance whether she becomes a world-famous concert pianist, an elementary school teacher, or a nurse who works per-diem. 

Diabetes brings enough anxiety to our lives.  This law brings just a little peace of mind.