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 Owl Bag is in the Orange Toolbox

"The owl bag is in the orange toolbox," the text read.

Nope. This isn't where I reveal that we're part of an intriguing spy ring.

The owl bag is, in fact, a small insulated cosmetic bag which currently holds a glucagon kit, one-touch mini meter, strips, a lancet and a pouch of glucose gel.

The orange tool box is a standard-sized portable toolbox which holds a vast array of items useful for repairing band instruments. Screwdrivers of all sizes with screws to fit everything from a piccolo to a marimba, pliers and wires, glue and assorted tape, reeds, mouthpieces and so much more are all housed in this very heavy toolbox which travels to the field for every rehearsal and with the band for every game, competition and concert.

We turned over the owl bag before summer band rehearsals began for freshman year. Over the course of that first year, it could be found in the director's desk drawer, in his messenger bag and on the sidelines of the football field. Last summer, at the start of summer rehearsals, I received the above cryptic text from my daughter. The band director, wisely we think, decided that if the owl bag was always in the orange toolbox, then it would always be in close proximity to the band.

We removed the owl bag from the toolbox and handed it over to the nurse who went on the recent overnight music department trip. It held just the right collection of things the nurse needed to carry. The day the kids returned to school post-trip, I was reassured by a mid-day text from my daughter:

"The owl bag is back in the orange toolbox."

Mission accomplished.

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.

Thankful

Unlike last year's expedition, which could have been subtitled, 'airplane flight to 5 days of walking in chaotic environments,' this year's music department trip seemed like a manageable adventure. It was a four hour bus trip to spend 3 days and 2 nights in and around an interesting city. Because of the presence of a great school nurse, concerned chaperones and staff, and friends who have my daughter's back, we decided, with my daughter, that she'd travel without a parent. Here's the note [with awkward edits for privacy] I sent to the band director on the Monday after this year's trip:

Just a note to say thanks for a great music trip.

 

What a nice opportunity it was for the kids to attend Thursday's concert.  [My daughter] was especially excited to see such an incredible piano concerto performed. 

 

Between the concert, the chance for feedback and work on the concert band's competition pieces, and a fun and interesting collection of places to explore with friends, [my daughter] had a terrific time.

 

We're always happy to be involved in the life of the band, including chaperoning. But we're also grateful for the steps you and [the high school] as a whole have taken to allow [my daughter] to participate fully and safely without us present, encouraging her growing independence both diabetes-wise and beyond.

 

Looking forward to hearing tomorrow night's performance!

I mailed a similarly thankful note to the nurse who accompanied the kids on the trip. My daughter was in touch with her regularly via text, and they always knew where the other was. The nurse carried a little bag (within her giant 'nurse bag') with glucagon, glucose gel, and a spare meter set. Her assistance was never needed.

These notes reflected my acute awareness that my child was fortunate to have such a fun and positive trip.  There are other kids who are allowed to have these kinds of experiences but with much less quality support. And there are kids who are told (illegally but indisputably) that they can't participate at all. For three days Dexcom Share was my most-used app. The texts about the frosted flakes for breakfast and the bus full of rice crispy treats were cringe-worthy. But mostly, I'm thankful.

Another Opening, Another Low

It's been a couple of years, and we forgot. Performing in musicals makes my kid low.

Except for an occasional adrenaline-induced high, especially on opening night. For which insulin should be dosed sparingly, not aggressively.

Exercise is the most obvious cause. This year's show was particularly dance intensive. At two and a half hours long and involving at least five quick costume changes, every performance resembled a marathon. Saturday's double-header was made possible by a giant between-shows order of Thai pineapple fried rice.

Being in a show also puts her off schedule. Diabetes likes to eat, move, sit still and sleep within the confines of a predictable routine. Dinner at 4:30 on show nights, 8:30 on dress rehearsal nights? Both unusual. Dancing and performing in the evening instead of sedentary homework? Unusual. Diner pancakes or cast party food post-show? Her insulin to carb ratios are set pretty accurately for regular mealtimes, not so well for midnight. There was lots of overnight juice.

Exhaustion is another probable contributor to the show lows. The weeks leading up to opening night involved long rehearsal days followed by late homework nights. Schoolwork didn't stop. Regularly scheduled music rehearsals didn't stop. She burned more energy than usual just to keep up with the long hours.

It's absolutely true that kids with diabetes can do the same things others do. They can even make it look effortless. Waking a couple of times per night for juice, calculated intermission snacks to improve the odds of stable second act blood sugar, checking and double-checking the backstage bag of supplies, and maintaining an overall high level of diabetes vigilance are invisible tasks, even to most of her cast-mates.  To her all those tasks are totally worth it to be able to participate in her high school's musical.

Wouldn't it be nice, though, if she could just do the same things other kids did without all of the extra effort?

Flu

Neither of us felt great on Tuesday a week and a half ago. By mid-day Wednesday we were camped out on the couch coughing, feverish and watching the Olympics.

We visited our respective primary care providers on Thursday. Both were out of diagnostic swabs but our symptoms of fever, aches, cough and utter exhaustion led both to diagnose us the old-school way.

Despite getting flu shots and obsessive hand washing and hand sanitizing, we ended up with the flu.

Because of the afore-mentioned flu shots, the experience was allegedly less awful than it could have been. Nevertheless we spent Wednesday through Monday pretty much immobilized in front of the television.

Diabetes, needless to say, did not like the flu. The night before it hit was a multi-juice box night, which is consistent with my daughter's pattern when she's coming down with a virus. Despite no medical information to back me up, I've always assumed these pre-symptom lows were caused by her body waging a last-minute battle against whatever germs have invaded.

Then the blood sugars headed up. And stayed there. Days would usually start out okay- higher than usual but nothing crazy. Then, despite temp basals, corrections, and a diet consisting mostly of chicken soup, she'd crest 300 by mid-afternoon.

By bedtime (which was before 9 several nights- when sitting on the couch became too exhausting) she was sliding back into an acceptable-for-being-sick range. My saintly husband took overnight duty a few nights in a row, each of which required at least one correction bolus.

By Sunday afternoon and Monday the highs weren't SO high and the correction boluses began to actually work a little.  She was on the mend.

We've done diabetes + colds, stomach viruses, strep, pneumonia, chicken pox, dental surgery, ear infections and more, but never flu. There was quite a bit of transferrable information from our experiences with other ailments. We knew about the necessity of frequent glances at the CGM, setting increased temporary basal rates on the pump, and aggressive correction boluses for highs. We knew that with patience and perseverance blood sugar would return to normal as the illness passed.

The primary novelty of the flu compared to our countless other illness + diabetes experiences was the duration of being really sick. With the illness lingering, in a serious way, for nearly a week it was a long wait for blood sugars to look more like they usually do. The silver lining was that both of us were too sick to expend any energy worrying about it. It took everything we had just to keep our tea mugs full.

Spare a Rose

I reorganized my daughter's insulin this morning. I discarded a vial of Lantus which expired two years ago- a vial we had on hand only in case her insulin pump failed and we needed to give her an injection. We had never opened it. We have a new container of long-acting insulin on hand, which we also hope never to use. 

I took the oldest vial of her usual fast-acting insulin out of the refrigerator so that we can start using it to fill pump cartridges, and then I reorganized the butter compartment with several more vials, enough for a couple of months.

I also restocked the diabetes supplies in her room: test strips, lancets, insulin pump paraphernalia, and the stash of juice boxes we keep on hand for overnight lows.

What a hassle all this acquiring, organizing and using diabetes supplies is. And how fortunate we are to be able to do it.

The International Diabetes Foundation's Life For a Child Program helps families who live in places where having a butter compartment full of insulin and a drawer full of lancets and test strips is unheard of. There are children in underdeveloped countries around the world whose lives have been saved by this program. Children who would otherwise have no access to insulin or any other diabetes care supplies. Per the organization's website,

The program currently supports over 18,500 young people in 42 countries. There is so much work still to be done, we estimate that over 100,000 young people still need our help. Together we can achieve our vision that no child should die of diabetes.

This will be the 5th year that 'Spare a Rose' will be part of our Valentines' celebration.

Sparing one rose from a bouquet of a dozen and donating that $5 cost to Life for a Child provides a month of insulin, syringes, and diabetes education to a child in need. Donating $60 and foregoing roses altogether provides a year of life.

Want to learn more, or participate? This is the link!

Happy Valentine's Day!