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.

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.

 

 

The Great Lancet Quest

Every time we travel, I restock the diabetes box.  This time was no different.  I counted out the site change items, threw in an extra 50 test strips and added a new 8 pack of juice boxes.  The flashlight was there for overnight checks and the spare glucagon was still good.

Off we went for a weekend exploring a city my daughter had never visited. On the first morning in the hotel, my husband (our household's official lancet changer) went to swap it out.  "Where are the lancets?" 

"They should be in the diabetes supply box in a snack-sized zippy bag.  It's probably in the big Ziploc with the site change stuff?"

By the time every one of us had rummaged through the stash of supplies, we knew there were no spare lancets to be found.

The initial thought was, 'maybe we could make it- it'll only be 2 more days.' But what if we dropped the lancing device and it popped open?  And certainly it would be better for my daughter's fingers to have a new, very sharp lancet at least every morning. Knowing that there was a CVS a block from our hotel, and that lancets were the least expensive of our supplies to replace, we decided to stop on the way to our morning destination.

We wended our way to the pharmacy department, at the back of the store, where the diabetes things have been kept on nearby shelves in every drug store I've ever visited, and there they were.  Locked in a case in front of the pharmacy counter.  Our usual lancets.  I got the pharmacist's attention. "Can I get a box of lancets, please?"

"Well, here's the thing: the key broke off in that case and I can't open it anymore.  What kind do you need?"

"One touch ultra soft?"

He looked in pharmacy area, hoping he had some stocked for a prescription purchase.  No such luck.  "There's another pharmacy on the next corner, and one on the corner after that," he said pointing.  "I'm sure you can get some there."

On to Rite Aid we went, and back to the pharmacy area. There were unlocked, but there were none of our usual brand.  After a careful assessment of the boxes of Rite Aid brand lancets, we learned that they would fit our lancing device, and that there was a size which would (allegedly) prick the finger with a similar impact.  My daughter was extremely apprehensive.  She wasn't convinced that these new ones wouldn't hurt more or be less effective in drawing blood.  But after weighing the options of buying these and continuing on to our fun tourist destination, or finding another pharmacy, we bought the lancets.  They worked just fine.  And the best part (and probably the ultimate selling point to an anxious kid)? 



Colors!

Refill Time

I ordinarily order my daughter's diabetes supplies intermittently.  The strips are refilled in one month, the insulin in another.  Yet because of some glitch in the time-space-diabetes continuum this week, we needed everything at once.

Ordering the strips and lancets requires a phone call during which I yell numbers and answers to yes-no questions at an automated telephone robot lady.

Insulin is a 2 step process of calling in the refill to CVS and picking it up.  The third step is avoiding purchasing the discount Valentine's Day candy or the new Easter candy on the way in and out of the store.

Ordering sensors involves an unfailingly friendly conversation with someone in Utah.

Insulin pump supplies usually ship automatically but when I need to change our order for any reason, it also involves a phone call with a real person.

Taken separately, these tasks are not overly time-consuming.  Sometimes there's a line at CVS, or I'm put on hold to wait for a representative.  But even then, it's manageable.

What I realized yesterday was that, strung together, these activities take up a solid chunk of time.

I started at noon, calling in the order for the strips.  Ten minutes.  Then I called for the sensors. I was on hold for ten minutes, and spent another ten minutes on the phone with the afore-mentioned friendly person in Utah.  I needed to add cartridges back into our pump supply order after using up a surplus. Fifteen minutes. Then I drove to CVS, where I waited in line for the insulin I'd ordered the day before. That was a 25 minute round-trip.  Put all together, this string of tasks felt like a huge undertaking instead of the usual quick project while dinner was cooking or quick stop on the way home from the grocery store.

Put in perspective, of course, this is not a big deal.  In an hour and a half, with a manageable-for-us expense, I was able to order everything I need to keep my child alive for another 3 months.

But I'd still rather spend the time and money on something more fun.

Wordless Wednesday: The Glucagon Edition

Note the expiration dates.

I picked these up on the same day at the same pharmacy.

It's the same scenario every time I refill the glucagon there.

Every kit we have expires in a different month (or year).

I can barely keep track of when we last did site change.  How am I supposed to remember when to replace these?!

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?

Travel Trouble

A couple of weeks ago, we took our final trip of the summer.  It began with a familiar journey of four and a half hours to grandma and grandpa's house.  We would spend a night there and then travel another hour and a half with them to a cabin on a pond in the woods.  We make this trip once or twice each summer, and I mistakenly believed I could easily pack what we needed without the extra concentration required for, say, our trip to Florida earlier in the year. 

The bad omen came three quarters of the way there, when there was a thunk and a subsequent dragging sound.  Sadly it was not from a nearby vehicle, but from our own.  The muffler had come loose and was dragging down the highway.  My husband heroically secured the muffler to the car with a bungee cord and we traveled slowly but steadily to our destination.

We enjoyed a pleasant supper and researched the hours of nearby muffler places for what we hoped would be a quick fix before continuing on our way in the morning.  The only other piece of business for the evening was a site change.  Which would require insulin.  Which I realized, with a sinking feeling, was at home, four and a half hours away. 

Hoping against hope, I peered into my in-laws' fridge. Because we visit often, we leave vials of lantus and novalog there for just such a circumstance.  Sadly, my memory was correct that the last time we visited, we discovered the insulin to be near its expiration date and brought it home to use and to replace upon our next visit. 

It was 7:45 p.m. If we wanted to enjoy the rest of our vacation, we needed a source of insulin by the time the muffler was fixed in the morning. Our other options were heading home, or visiting the local hospital by evening. 

As much as I'm a supporter of small local businesses, this night is why we use a national pharmacy chain.  The pharmacist found my daughter's name quickly in the computer system and submitted the request for a refill.  Their pharmacy would be open until 10. 

Then, "Did you just refill this prescription last week?"

"Yes, but I'm visiting family here and am 250 miles from home.  I left the insulin at home."

"I'm sorry, but it's not going through on your insurance."

"Ok...well...how much would it be out of pocket?"

"Let me see...Oh WOW...it's a lot.  It's $169."

"Hmm...that is a lot." 

Funny how fast your mind can work in these moments.  I was considering the obviously higher value of my daughter's life, but also the comparative cost of traveling back home to get the insulin and the immeasurable cost of losing out on a vacation when the pharmacist offered, "Let me call your insurance for you.  I see they're still open.  Sometimes they will override the cost in an emergency.  I'll call you back within the hour to let you know."

Twenty long minutes later, the phone rang.  Our insurance would pay for it, and it would be waiting for me to pick up in a few minutes.

Site change waited until morning, but was easily done while my husband went to the muffler shop.  We very carefully packed the rest of the insulin vial into our significantly quieter car and hit the road.  The subsequent discovery of the forgotten water toys, and the need to re-wear the same shorts a few times were issues which seemed trivial compared to the trip's beginning.

Too many people pay $169 every time they need a vial of insulin.  Lots of  people end up at the hospital because they cannot afford that $169.  Countless people have advocated for insurance companies to cover the cost of insulin, even for people dense enough to leave it at home on vacation. 

While it was a stressful start to a vacation, the experience made me grateful for what our family has, and for those who make sure we have it.  It was a reminder that there's more to do out there to ensure everyone has access to basic diabetes care.