Quick review. Both my children, Pearlsky and David, have an amino acid disorder. They don’t make it, so they need to take it. There is no medical history (i.e.: literature) on the disorder before Pearlsky. Lucky us. The FDA considers amino acids a “food additive,” not a medicine. Pearlsky lives with me (duh) and David is in a fancy shmancy residential facility. They have been giving David the amino acid for over five years, we live three hours away.
And then today’s emails, first from an unknown (to me) nurse to David’s mom …
I previously sent you an email asking if you had taken David’s amino acid containers home with you. After asking around, I have found what happened. Yesterday, the pharmacy did a routine audit of our medication room. Because the amino acid was not in a clearly labeled container with an expiration date, it was disposed of by the pharmacy per their regulations. I have talked to my manager and to prevent this situation from reoccurring, per the pharmacy, we need to have a clearly labeled container with every batch of amino acid. The container needs to have the medication name and dose, and most Importantly an expiration date. I’m very sorry for the inconvenience, but due to this as of right now we only have the small emergency supply container.
“Inconvenience”? Fuck you. Understand what this nurse just said … “we had an audit and all of your son’s live saving amino acid has been tossed, without us knowing, and we only have a small bit left. Sorry for the inconvenience.” I have no idea what that means, how long they can last. I just filled Pearlsky’s school supply and placed an order for more of the amino acid last week, my supply is low.
The fact that your pharmacy disposed of David’s amino acid is outrageous. The amino acid is considered by the FDA to be a food additive, it is not a medication, it does not require a prescription, it is not regulated in anyway. It does not come to me in a clearly labeled container, it comes in a large clear plastic bag with 5 Kg of powder and no expiration date. The demand of an expiration date is untenable, impossible, and unless you demand this type of packaging on every food additive that families bring, this is a violation of David’s civil rights. Your pharmacy has destroyed the only labeled containers that exist.
I hereby demand your pharmacy replace the amino acid at their cost, it is expensive and they had no right to dispose of it.
Does this pharmacy dispose of other food stuffs? Do they audit your sugar?
Note: The fda refers to the amino acid on their “Listing of Food Additive Status Part II” here: http://www.fda.gov/Food/FoodIngredientsPackaging/FoodAdditives/ucm191033.htm
Without the amino acid, David’s seizures will go out of control and become life threatening. It is YOUR ORGANIZATION’S responsibility to make sure this does not happen. It is YOUR ORGANIZATION’S responsibility to replace the amino acid and protect my son’s health. I do not know how quickly I can replenish your supply.
By the way, these are being cc’d to everyone at the facility, and I mean everyone. This is from the head of nursing after some phone calls:
I have spoken with David’s parents. They now understand what happened and why, and David’s mom will be delivering more amino acid tomorrow. Our facility will bear the expense of the supplement and their transportation costs.
I also spoke with TW at PharMerica and we have a plan for handling the supplements:
1. The order must include the words “Family will supply”
2. We will provide the family with Avery-type labels that include patient name, name of supplement, the complete order, and two additional lines to be filled in by the family: Lot # ____ and Exp. Date ____
3. The family will fill in a lot number and expiration date and apply the label to the supply they bring to us.
This sounded like a suitable middle ground that makes clear everyone’s responsibility and intent. I am taking steps to have the labels ready for tomorrow. When I spoke with David’s dad, he said David’s mother will bring the original packaging tomorrow; he says there is no expiration date.
And I have the (so far) final word …
I want to thank you for your efforts and communication today, as well as thank HM for bringing this to our attention as soon as she was aware of the facts. I did try to call her when I received her email, but to no avail.
I still do not understand how anyone could destroy the amino acid (I do understand the “why”) without telling your staff. Am I missing something there? Was any staff member told at the time that items from your medicine control were being destroyed or is this typically done in secret?
As to the plan you outline … David’s mom will show you the packaging I receive when purchasing the amino acid. I buy it in 5 Kg quantities at $85 per kilo. As you will see, the labeling is very minimal without any dates, but it does have a batch number. Occasionally I also receive, separately, a Certificate of Analysis that specifically states the information is not warranted to be accurate. It contains a date of manufacture and a date for “retest.” Also note that expiration dates are not legally mandated for food additives.
Since there is a new batch in transit to me now, I am able to send up the greater amount of what I have for the three children.
Please note that at least one kilo was destroyed, at a cost of $85. I do not have any more containers that would be appropriate, I am sure PharMerica can replace these, but with their obvious lack of empathy for your clients, I somehow doubt they would care to.
Let me know your thoughts after you see the packaging and let me know if I should make up random expiration dates.
Thank you for all you do for David.
Morons. If my delivery does not arrive by Monday, well, we are in trouble.
I am coming to the realization that the only way for you to guarantee good care for your kids is for you to go to med school. I am sure you could manage in your copious free time and you’d undoubtedly look cute in a white jacket! Seriously, the capacity for the system to screw up never ceases to amaze me and the skill with email is a joy to observe. Go get ’em.
PLEASE tell me that you started the correspondence with them with the ” Inconvenience? Fuck you.” It was my favorite part.
The amount of trouble you’ve had trying to make people understand that your kids need their meds/amino acid is mind-boggling.
Maybe you could make a sign, on bright pink oaktag, have it laminated, and hang it around your kids’ necks.
Oh, I know you’re thinking it should say that your kids need this amino acid or they will die.
But, no, I think it should just say, “Fuck with me, and you Fuck with Single Dad.” That should be sufficient I think…
I shudder to think about what happens to the children who don’t have you as a father.
Oh God. I agree with everyone here. I’m so, so sorry.
Oh, I’m so sorry. If the PharMerica guys are still breathing, you’re a better person than I… If, on the other hand, you want help burying the bodies, give me a call.
How is ‘Pearlsky’ pronounced? Is it ‘Pearl Sky’, or ‘Perl-skee’?
and PS. Sorry about all the idiots.
Multiply this cluelessness by the number of severely disabled kids and adults who are at some time under the care of a residential facility. Then curl up in a corner and have the shakes for a while.
SD, you are your kids’ hero.
A.M.: The director of admissions used to joke when they messed up, “Didn’t you get the memo not to F with SingleDad’s kid?” Really.
Brigid: I am considering a formal complaint against PharMerica with the state.
Helena: Pearlsky’s name comes from her middle name, Pearl, and the “Russian-ization” of it from her Russian nannies and her dad who had six years of high school Russian, hence: Pearl-ski
Lila: That is a big reason I do this …
Ken: There are four known cases in the U.S. of this deficiency, about a dozen more in Europe. I supply the amino acid to both mine and often to one other.
Oh – how cute! 🙂