By Cathy Jameson

This was a recent update I shared with family and friends.  It’s not the medication issue that I’d asked them to pray about last month (for that medication, it’s the same status as before…we’re still running out of it), but here was a new thing I asked them to pray about…

For the love of all that is holy and Name Brand ONLY.  Don’t send my kid the generic form when his prescription clearly states he needs name brand.  And don’t let me catch you stretching the truth to make it easy for you when I ask you to read what the doctor wrote.  “The doctor wrote Name Brand Only.”

SO DO THAT!!!!!!!!!!

FYI, the doc wrote it correctly but didn’t add the crucial code.  Words are good but that code! Computers respond to codes, not well-intentioned words anymore.  Without that info, unbeknownst* to a patient, the pharmacy can “legally change it and fill the script with generic”.  

At that point, if I was the pharmacy tech, I’d ringy dingy the doctor and ask, “Did ya mean to leave the code out, or do you wanna maybe fill it in?”

DEAR LORD.

Can we please get a tee tiny break with the meds issues?!

*I beknownst it.  We’ve run into this horrible, worrisome issue before (generic can cause worse issues for Ronan).  Plus, when I called the Rx in on Monday, I asked for the medication by its brand name.  “Yep. Yep, we can send it,” the pharmacy tech told me.  “We’ll have it to you by Wednesday.”  THANK GOD I read labels and package inserts.  I immediately called and let the tech who answered know of the error.  I then asked her to refill the supply with the name brand. 

I was shocked, and actually pretty angry, when she asked me, “Ma’am, can you have him finish out the month supply we just sent?”

ARE YOU KIDDING ME??

No!  Fix it!!

We’re already dealing with a potentially scary med issue.  I, and Rone, don’t need two potentially scary med issues.  I’ve called the doc’s office and will pray that one of the amazing nurses jumps through hoops for us again.

Those nurses.  We love how much they help us. (…had to end this on a positive because I was getting all kinds of stabby there for a few minutes…)

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As happens when I share a prayer request, people immediately started to pray.  And Ronan’s nurse quickly attempted to fix the latest problem. 

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I feel absolutely helpless when situations like this happen.  As the parent, I can only do so much.  I am not the pharmacist.  I am not the pharmacy tech.  I am not the insurance company nor am I the delivery driver who will deliver needed medication in a timely manner.  I am the Mom who hopes and prays that things will go only well for my son. 

While that is true, I am also the Mom who will fight like hell to keep my son healthy and safe. 

When I followed up on Friday with the specialty pharmacy, which is a few hours away from us, I spoke to a different pharmacy technician.  She shared that since the insurance covered the generic form that was just delivered, they won’t allow a refill until February 2^nd.  I told her how disappointed I was and blurted out, “Who do I need to fight?”  I was stunned when she said, “The pharmacy manager is working on this for you.  I can ask her to call you when she’s off the phone.”  I quietly answered, “That would be great, thank you so much,” and made sure to keep my phone close by.

Less than an hour later, the pharmacy manager called me with new and hopeful information.

It’s all over Ronan’s profile that he needs and is dispensed name brand medication.  When the doctor sent in the updated refill form with the correct wording at the end of December, the system didn’t ‘see’ the code that pushes Ronan’s name brand prescriptions through.  While everything states name brand medically necessary, the DAW 1 code was missing. 

DAW 1: This means dispense as written; no substitution allowed. [Pharmacy Tech Review]

If it’s left off, the pharmacist can, by law, dispense a generic form – a therapeutically equivalent drug product.   

I’ve heard about that for years, but never thought to look at that law closely.  Today was the day to do that and to tell my family about it.  I oversee most of Ronan’s medical care.  If, God forbid, something happens to me, and my husband or our back-up guardians need to call in a script, they, too, must know to check if that critical wording and code is being used.  

If you also oversee a loved one’s medical care, including managing their prescriptions, it’s important for you to know that “The mandatory substitution and patient consent laws are separate statutes, and each state can choose any combination of the two policy tools.  In any case, the consumer can overrule the substitution, but the laws determine the default option and consent requirements for the pharmacist.”

She didn’t go into all of the legalese, but the pharmacy manager gave me just enough information for me to start a search.  I’m glad she went into some detail.  Before we’d had a chance to talk, I was ready to ask for a patient advocate to assist me or to consider using a tactic my Mom shared in response to my prayer request: 

Long ago, before our world turned upside down, a friend of mine was trying to get treatment. It was legit, insurance allowed, but doc was resistant because in HIS opinion it wasn't needed. My friend, exhausted and ready to stab him with his expensive pen, said through gritted teeth, if I were your mother, would you want her doctor to put her through this crap??

She embarrassed him into submission.

You go, Mama, wish I could give you big hugs.

But I didn’t need to ask for an advocate or for the pharmacy manager to put herself in my shoes.  When I’d asked her if I needed to put my dukes up, she said, “We’ll fight the insurance company for you.  In fact, I’ve already made one call to them and will make another one when we hang up.” 

PRAISE BE!

The problem, though, is that the medication is out of stock, just like the other name brand medication is out of stock. 

“Could you come to us, if I can find it anywhere local, and pick it up?” the manager asked.

“Yes,” I told her.  I’d crawl on hands and knees on shards of glass if needed.

“I may be able to find it at the hospital’s pharmacy,” she shared. 

“Okay,” I said while imagining myself driving up there already.

“Wait!  I think I can get you an 8-day supply.  The systems don’t like to ‘partial control’ the medications because it can potentially mess up what the original script states, but you’d get what your son needs and...” the manager trailed off for a second.

“…you’re eligible for a Saturday delivery, so I can have it shipped to you overnight.  It’ll be to you tomorrow by 11am.  How does that sound?”

OHMYGOLLY!

“That would be so helpful.  Thank you so much!” I replied gratefully. 

While she set up the delivery, I kept the conversation going.  I told her it always seems that these sorts of panicky situations happen at the end of the month, at the end of the year, or right before a national holiday when places shut down for 3 days.  “Oh, that’s right.  Monday…we’re open on Monday,” she shared.  While many Americans will have the day off to honor the late Martin Luther King, Jr., the pharmacy manager let me know that she’d be at work that day.  When she’s there, she said she’d keep looking for the remainder of the month’s supply Ronan requires.  She also said she’d make sure the partial order didn’t reset the order back to generic in the system.  She added one more thoughtful thing.  Should I ever encounter another problem, I am to please ask for her by name.  I told her that’s why we picked her particular pharmacy.  Other places have seen Ronan as a number, or a dollar sign, and never a human.  Where the younger pharmacy techs there could only do so much for me, they don’t have the years of experience the manager has under her belt.  They couldn’t think outside the box as quickly as I needed them to.  I know that my frustration unsettled the one who asked me to just use up the generic we’d just been sent.  I won’t apologize for my snappy response to her.  She needs to know that her suggestion was a horrible suggestion and one that could result in devastating side effects for my non-verbal, medically fragile son. 

This manager, though, had everything under control and in Ronan’s favor within just a few short hours. 

Crisis averted.  Thank the Lord!

For the next time, should there be a next time, I’m now a tiny bit more knowledgeable.  Everything I learn, even after all these years, helps me to advocate for my son a little bit quicker than the last time I had to speak up for him.  It can be overwhelming at times, and I do hate that I immediately feel the need to go into fight mode.  But if I let things slide, Ronan suffers.  He’s already suffered enough.  It wouldn’t be right for me let that happen again.  I can relax a bit today, but dukes up next time if I need to do a little bit more to make things a lot better for Ronan.

Cathy Jameson is a Contributing Editor for Age of Autism. 

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Tidbits from that paper that stuck with me after I discovered more information on DAW laws:

“…Mandatory substitution laws require pharmacists to use the generic as a default, and presumed consent laws allow them to assume that the patient agrees to the substitution.  Both situations can be overruled by the patient.

At one time, laws in most states required pharmacists to fill a prescription as written, precluding generic dispensing when the physician had written the brand name. The last of these anti-substitution laws was repealed in 1984.

There are currently two types of laws that regulate a pharmacist’s substitution of generic drugs... The first determines pharmacists’ options when they are filling a prescription for a brand name drug. Some states require mandatory generic substitution, and others are permissive to pharmacist discretion. That is, in the mandatory substitution states, the pharmacist must default to the generic version of a multi-source drug, and in the permissive states they have the option to substitute, but it is not required. While this law determines if the pharmacist has discretion over generic substitution, both forms of the law allow the patient/purchaser to overrule the substitution. The second type of law determines if the patient’s consent for substitution is presumed, or if it must be explicitly acquired. In a presumed consent state, the pharmacist can substitute without informing the patient. This law regulates whether or not consumer consent is required for substitution, but as always, the consumer maintains their right to overrule the substitution. 

As expected, the generic drugs are substantially cheaper for consumers. 

In reality, a patient’s consumption of prescription drugs is a joint decision determined by both the physician and the patient. 

When explicit patient consent is required, the patient is given a clear chance to persist with their preference, rather than substitute, as the pharmacist and payer of the drug costs would have wanted them to do.”

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More DAW codes to know, also found on the Pharmacy Tech Review website:

Ed Dowd's Cause Unknown can't be updated fast enough as we see a steady stream of sudden heart attacks and deaths in the news. Dr. Robert Malone's Lies My Government Told Me and the Better Future Coming speaks to the power of action and personal growth based on knowledge.  See you on Sunday with Cathy's post.

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