A Spot of Frustration

My son is now 18, but at the time of this original post on A Spot of Hope, he was only 17. Andy was diagnosed at age 4 with psoriasis and age 5 with juvenile psoriatic arthritis. Life has been a roller coaster ever since, especially when it comes to pharmacies and insurance. I’m sure so many of the chronically ill, but chronically fabulous, readers can relate to what happened back in April. It’s a never-ending battle.

Dealing with pharmacies, insurance and lack of respect has me feeling frustrated!


By the time my kid gets his biologic medication delivered, he will have been one month without taking it. No wonder he wants to sleep all day and has a bad case of brain fog! (Oh wait, maybe that’s just being a teenage boy…)

Anyway, one thing is for sure. He’s hurting. Don’t let his attitude fool you. He hides his pain well when it comes to his psoriatic arthritis.

So, why has it taken so long to get the medication? It’s been the perfect storm of mishaps that started nearly four weeks ago.

First, the boy didn’t tell me he was out of medication. We’re trying hard to transition him to the realities of college life and that his parents won’t be there to order his medication or administer it. So far, this life lesson could be going a lot better.

Next, I knew we couldn’t get the medication refilled without getting his labs drawn. I took him to do that, but the standing order script had expired. Luckily, the hospital took pity on us and gave him a courtesy draw.

The next day, I called his doctor’s office and spoke with a nurse. She said that she needed his lab results before the office would refill the medication. I explained that the labs were drawn yesterday and that his general practitioner who also receives a copy of the results had already called and said everything was normal. This did not satisfy the nurse, and I was told that I would need to call the hospital to get the results faxed to her. Unfortunately, I could not do that at the time because I was on my way out the door to an important meeting. She said it wasn’t her job to call and track them down, so we’d just have to wait until after the weekend.

Days went by and we were still waiting for some sort of update. That finally came with a call two weeks ago with Andy’s regular nurse. — Did I mention how much we love her? — She said the results finally updated in the system and she was refilling the prescription for him.

After waiting days for call from the mail-order pharmacy to schedule a delivery, I finally called them. The representative told me that they never received a new script, but there is still a refill left on his old script. Well, I tell her that’s not true because each time the script is written for three months only with no refills, and he gets a three-month supply delivered. Guess what happened at that exact moment? The new script just popped up on her screen. The doctor’s office must have just sent it over right then!

Really? How dumb do you think I am?

I wasn’t in the mood to play games or argue. I just sighed and said to fill it as soon as possible. But that wasn’t going to be possible. Why? Because we need a new prior authorization for the insurance!

The pharmacy representative assured me that they would be able to get the prior authorization and still have the medication delivered on Saturday. But, just in case, they would call if they ran into any trouble.

Needless to say, Saturday came and went. No medication. No phone calls.

No delivery on Sunday. After all, it’s Sunday.

No deliveries on Monday because the medication needs to be refrigerated.

No delivery on Tuesday.

I called early this morning to find out when this medication was scheduled to arrive. You won’t believe this coincidence! At the very moment I was on the phone with the pharmacy representative, the prior authorization came through!

Again, I wasn’t in the mood to play games. I just want the medication.

So, even though the medication hasn’t been delivered yet, I’m very hopeful — maybe naively hopeful — that it will arrive tomorrow. That will mean he’s been without his medication for nearly four weeks.

Every stage of this, there was a problem. I can be quick to blame Andy for not alerting me sooner that he was out of medication. And, I can find fault with the nurse and the pharmacy. And, yes, I can even blame myself for not following up sooner. But, to do any of that would only prove fruitless.

The real problem lies in the big picture: The whole health system is a nightmare.

How can I transition my 17-year-old to take care of his own health in just a few short weeks when he turns 18 if I still haven’t learned to completely navigate it in the past 12 years?

I only hope that Andy plans ahead, asks many questions at every stage of the process, and has lots and lots of patience. That seems to be the only way to get through all of the red tape and nonsense.

And to think, he gets to do this all by himself in three months. Woo hoo!

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