January 9, 2022

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by: admin

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Tags: AGE, Autism, Vigilant

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Categories: autism

Being Ever Vigilant – AGE OF AUTISM

By Cathy Jameson

It’s not really a New Year’s Resolution.  But if I had to share one bit of advice as we begin 2022, I’d share that we must always be ever vigilant. 

I have shared some of the complications my son has had post-vaccination, including experiencing seizures.  Other complications, ones that could have also been avoided, have crept up over the years.  Those complications were discovered while filling prescriptions or while battling insurance companies. 

2009

Today I’m a medical billing detective.  Looking for needles in the haystack with receipts EOBs, insurance claims and wondering why money doesn’t add up in our favor–someone’s getting the Wrath of Cath in a phone call tomorrow.  It’s always fun to do on a Friday.  Grrr…

I never knew how thorough I had to be when it came to reading medical records, filing insurance claims and filling prescriptions until bad things happened.  Sometimes, I’d be able to thwart an issue before Ronan would be affected by it. 

Other times, I could not. 

2009 – Early June

Ugh.  Ronan is having more strange eye and head activity. I believe he had a seizure right after I put his socks on. Legs flinched really fast and the rest of him was going so slowly.  I called the neuro nurse again.  We need to switch to the brand name drug to see if it is the generic drug causing the activity.  Get this though…we have to do a trial to prove the meds help so that we can then go back to insurance and demand they pay for the brand name at the generic price.  Our kids are guinea pigs to save a couple of bucks.  I’m so scared.  I’m keeping Ronan home from school today.  He looks like a train wreck with his eyes all dark.  Say some prayers.  I’m hoping he takes a nap so that he can sleep some of this stuff off.

2009 – Late June

Just tucked Ronan in for his nap.  Breakthrough seizures still trying to get through.  He’s all snuggled under his yummy blankets. Gave him a kiss and said, “Mommy loves you.” Ronan signed, “yes yes yes yes yes yes yes” with the biggest grin.

2009 – July

Ronan’s meds are bringing on more seizure or pre-seizure activity; we need to go back on the name brand and get insurance to cover it with generic pricing since breakthrough seizures are still happening.  It is awful that a kid has to prove to the insurance that he needs the better drug.  I hate the medical industry.  

When a series of very unfortunate events brought a problem to light, like those breakthrough seizures, I would document as much as I could about what I was seeing.  I’d date stamp the issue, keep a log of whom I spoke to and record what could (or couldn’t) be resolved.  By the end of that summer, with the help of a young pediatric neurologist and the owner of the small pharmacy we’d been using, the seizures subsided.  It shouldn’t have taken a fight, but getting insurance to approve and cover the better prescription turned into a battle. 

2009 – Late Summer

Breakthrough seizures + generic drugs = whoopsie.  Okay, now we (the insurance company) will pay for the brand drug that actually works to prevent the seizure. Grrrrrrr…..

We revisited breakthrough seizures a few years later.  That time, it was from a technical error. 

2013 – Late Autumn

The Keppra we’ve been getting since August has been the generic.  I should’ve known. 🙁  Ronan gets seizures on the generic.  I know we asked for name brand.  When we needed a new script, it obviously didn’t get transferred to the new supplier when it got switched to mail order.  I’m on the phone with them right now. 🙁  So mad and sad and feeling like poop for watching Ronan have seizures.  

Getting insurance to approve and cover new prescriptions takes time.

2015 – September

We switched Ronan’s seizure meds last week.  He began having seizures every other day which is highly unusual for him.  Stoopid generic meds!  After many emails, phone calls, faxes and tears, the name brand drug we requested was finally authorized.  Insurance also finally agreed to pay the $1,298.05 name brand (generic is drastically less at $152/mo.).  What a nightmare.  

Keeping that generic mix-up in mind, I shared the following with a friend years later when we discussed prescription drugs:

Get a Name Brand Only script for it (may have to be handwritten, not faxed/emailed to pharmacy).  Do not use generic.  From experience, generic is complete and utter crap.  If the insurance is a fight, the script also needs to have some sort of “medically necessary” wordage or a DAW code (Dispense As Written). 

If the ingredients of the meds are worrisome, ask if they can compound it.  It may be more $$, but will be “cleaner” (for lack of a better word) and may not use as many additives.  

That advice works as long as it doesn’t fall of deaf ears.  The worst is when it falls on a prescribing doctor’s deaf ears. 

2018 – January

Dear Doctor, As I shared, Ronan has had seizures in the past when he’s on generic meds.  I was able to get an emergency 3-day supply tonight, but to get the right meds for him can you write a script that says Dispense Name Brand Only please?  I am hoping that that will solve one of the other problems we encountered. 

Also, Ronan’s other insurance is saying that the cost of the meds exceeds the maximum allowable charge.  I don’t know who to call to address this or who to ask to override this, but hopefully with the correct language on the script it’ll go through.  Here’s hoping!  

Hoping is nice and all, but hoping that people will do the right thing doesn’t always happen.   The right thing would be to put people’s needs first.  Protecting profits over people seems to be how some groups and big businesses prefer to work.

2019 – November

I hate the FDA.

 

Ronan takes the name brand.  We can never let him go on the generic.  Not that the name brand is a sure thing, but damn the crap they pull on patients.  No one should have to deal with any side effects, minimal or not!

For the last few years, things have been okay with the prescriptions we’ve had filled.  It’s always wonderful when things are okay – okay means that Ronan is responding to the meds, that the insurance companies are covering them, and that refills are being filled timely and accurately.  I relax a bit when that sort of success happens.  I can relax more when things are okay for months, and even years, at a time.  I find that when I relax too much, though, things get by me, like what happened in November.   

The pharmacy we’ve been using quite successfully made a mistake. 

Then they made another mistake. 

When I discovered one more issue in December, I couldn’t believe it. 

Fool Me Once

I’ve kicked myself for not walking away from them the first time.  I knew I should have, especially when the next issue happened.  Ronan was due to receive a month’s supply of one of the seizure drugs.  Instead, the pharmacy filled the order with generic drugs he never should have received. 

How did I not take the advice I’ve given to several parents over the years?

If you do opt for prescriptions, the one piece of advice I strongly encourage you to consider is to get Name Brand Only medication.  The doctor needs to write that in the medical file and on the prescription itself.  

But I knew the current prescription was for Name Brand Only.  No exceptions!  What happened? 

When I asked why Ronan got this order and not the one he always gets, the pharmacy technician told me that the doctor authorized it.  With one quick call to our neurology nurses’ line, I proved that that information he gave me was false. 

They’re not only making mistakes, but now they’re lying to me?!

Pointing out that potentially grave mistake, I asked for whatever name brand they had in stock.  Since it’s a special order drug, I only got half the order.  I promised myself, and Ronan, that I’d switch pharmacies as soon as the rest of the order was available.  No way would I allow them to fill another prescription after the errors they were making. 

Over the next week, I waited for a text stating when the remaining boxes would be ready for pick up. 

No text arrived.

2021 – December

Half of the correct refill is ready.  That’s a little bit of relief but not good enough.  Better news…reinforcements have arrived in the form of a neuro nurse named Kathryn (she may spell her name wrong J but we are now kindred spirits as we share the same name and the same fight).

More on the story later after I get the full prescription in my hands…

A week later, I finally got a text.  Then, confusion.  I called the store to find out what was going on. The meds were promised, then they weren’t.  As had happened previously, my call was immediately put on hold.  I’d average 45-minute hold times each time I called with no one ever picking up when I needed them to.  The call would be dropped by the phone system, or I’d hang up and try to get through again. 

While still on hold, I decided I’d drive over to the store. 

In line at the store waiting to speak to someone, I could hear, “One pharmacy call, two pharmacy calls, three pharmacy calls…four pharmacy calls” over the PA system.  When it was my turn to approach the counter, I showed the pharmacist that I was still on hold.  46 minutes and counting.  About to run out of the meds, I said, “You never pick up the phone, you don’t open the drive-thru window anymore, you close early, and you still can’t fill a prescription correctly.  What is going on here??”  The explanation I got was that they are understaffed and that a “floater”, someone filling in from another pharmacy group, was supposed to fill the prescription at 11am. 

She did not. 

2021 – Ronan’s Birthday

For anyone keeping score:  Cat 3  CVS 0

There were tears (again) for the mistakes that (continued) to be made by them.  I knew they couldn’t fill the full order correctly.  They couldn’t even fill half the order correctly.  I was beyond livid and let them know.  Thank God for nurses and a much more professional pharmacy outfit who saw the problem and who quickly offered to help fix it.  I’m still nervous about a few things, but I’m giving it to God (and to the specialty pharmacy now). 

Thanks for the prayers, especially to anyone who kept this particular intention on the back burner…it shouldn’t have taken weeks to resolve, but it did. 

In the meantime, our doctor reached out.  “Hey, Cathy,” she started in an email she sent me after hours, “I see you’ve called the clinic a few times.  Can I do anything for you?”  With these sorts of issues, I generally talk to her nurses.  They are gems, truly, and can help me pretty quickly.  When they can’t help, they’ll consult with the doctor and get back to me with the information I need.  I’m glad for the neurologist’s desire to help this time. 

Within minutes of me writing her back, Ronan’s prescriptions were in another pharmacy database. 

Before he’d need them again, they were approved by insurance. 

And before the current script would run out, the new – and correct order was on the way to us. 

It was a relief to get the correct medication.  Going forward, I’ll pray that each refill is the right refill and that it arrives at the right time.  The new pharmacy simply did what I expect them to do:  fill prescriptions.  While preparing to transfer the prescription CVS failed to fill, I’d shared this with those I’d asked to pray with me. 

Besides filling meds correctly, the place I want to use instead answers their phone, they do their one job, and they do it well.

Before I ditched them, I’d had to pop into the CVS store more than I expected to.  On every occasion, the line for the pharmacy was long, like snake around several aisles long.  Not only would that line be quite full, so would the vaccination line be crowded.  At one point, when I raced back to the store to try to resolve one of the medication issues, it was nearing 9pm.  Several people were behind me at the consultation counter.  Even more people were lingering in the area after checking in on the vaccination app.  Feeling rushed, the pharmacist apologized for the mistake and said he’d look into the issue for me.  Then, while pointing at me, the pharmacist told the cashier, “She’s got to be my last Rx customer.  I need to start doing the vaccines next.” 

Ahh, that’s what’s going on! 

The COVID vaccines, “…and 15 others we offer…” their message would continuously say when I sat on the hold line for all those hours, are now the priority.    

This pharmacy doesn’t just fill medications anymore.  They’ve become a vaccine center.  In offering vaccines, they’re being pulled in two different directions.  Call them enterprising, greedy, foolish fools or all three – based on my recent experience, they are way in over their heads trying to balance both.  It’s too much.  No wonder mistakes are being made! 

I have two pharmacists admitting on record that mistakes were made and will see to following up on that.  I also have on record our doctor and our nurses sharing that they never want me to go through something like this again.  I really thought things were going better than okay as I filled Ronan’s prescriptions each month.  What a wakeup call these last few weeks have been.  They’ve been a perfect reminder for me that no matter what I’m doing for my children, I must remember to stay ever vigilant. 

Cathy Jameson is a Contributing Editor for Age of Autism.

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