...Because Medication is Scarce and People’s Health is at Risk
by a Person Who Has Been Chronically Ill and Medication Dependent for over a Decade
**PSA #1: This article is not meant to shame, berate, or in any way disrespect the hardworking and brave individuals who are maintaining contact with the general public during this global pandemic in order to fulfill our needs. This article is meant to point out a dangerous flaw in UPS’s response to the Covid 19 crisis that is putting the health of vulnerable people at risk and contributing to medication shortages.**
Unless you’re living under a rock that I would very much like to be living under, you are well aware that we are currently enduring an unprecedented crisis. I don’t mean the pandemic. That has precedent. I don’t mean the riots either. That has lots of precedent. I mean the delivery delays we are experiencing as a result of people flocking online to buy things they would normally buy in stores, or in some cases normally wouldn’t buy at all.
UPS (United Parcel Service) is a major carrier when it comes to US post. In fact, UPS used to be my favorite carrier. …until they chose to leave my $5,000 shipment of refrigerated biologic medication in their warehouse over the weekend instead of the next day delivery that was necessary for my medication to stay viable in favor of delivering other nonperishable items. Now FedEx is my favorite carrier because, even though FedEx has messed up more deliveries for me than UPS has (a lot more), they came through for me when it actually counted and saved my health.
This medication is not something I can just pick up at my local pharmacy, or any pharmacy for that matter. I have no choice but to order it through a specialty pharmacy and to have it delivered. Enbrel, a weekly subcutaneous injection that’s used to treat autoimmune arthritis like rheumatoid arthritis—a fairly new diagnosis for me—loses its viability once it reaches room temperature. It cannot be chilled again, and it cannot be used after sitting at room temperature for longer than 30 minutes. Yeah. It’s awfully unstable for something that costs my insurance $60,000 a year, but there you have it.
This volatile medication is not shipped in an anonymous plain brown package. It is transported in a large styrofoam cooler that is very clearly marked “REFRIGERATE UPON ARRIVAL” with bright red tape. Its sender is very clearly a “Specialty Pharmacy,” and the orders stipulate Next Day Delivery, not 2-day shipping or 5-day shipping or any other kind of shipping.
And yet someone at UPS, someone who had full access to this information, made the decision to leave my obviously time-sensitive and essential parcel out of that day’s delivery AND the following day’s delivery to make room for other items. The next day was Sunday. I did not receive my medication until the following Monday, A FULL 4 DAYS AFTER IT HAD BEEN SHIPPED. Needless to say, the medication was no longer viable.
To compound the problem, UPS did not notify me (the recipient) or my specialty pharmacy (the sender) of their choice to delay my perishable parcel. I didn’t even know there would be a problem at all until the next day, which was Saturday. To compound the problem further still, UPS does not to have any form of customer service available on weekends. So when I tried to contact UPS to beg (and I do mean BEG) someone to put my clearly-marked, essential medication in a refrigerator so perhaps it could still be viable when it was (hopefully) delivered the following Monday, I got an automated response feeding me some vague claims about how the Covid 19 crisis is affecting things and thanking me for my patience.
Just how patient do you think I should be? It’s not like you’re delaying delivery of a pair of socks I ordered last week without telling me and as a result my feet might unexpectedly get a little cold. You are putting my health in serious jeopardy without notification and being ridiculously wasteful regarding essential resources when you have the option to do otherwise by simply choosing a nonperishable item to delay in place of the ***clearly marked perishable medi-freaking-cation.***
Not only was this a colossal and totally avoidable waste of resources during a time of severe drug shortages, but I was forced to miss a dose of my medication. I had to order a replacement shipment of Enbrel that Monday and ended up waiting 5 days for the replacement to clear all the red tape and for it to arrive. My meds were supposed to be in my possession on 5/29. I did not receive them until 6/5, and that was only thanks to my pharmacy losing faith in UPS and choose FedEx, who apparently have an actual commitment to same-day delivery of medication even in a crisis. My next dose had been due on 6/4, and thank you my sweet merciful Savior, the 24 hour lapse didn’t seem to have an effect on my physical health as far as I can tell.
The stress of not knowing when I would have my next dose of medication was brutal at a time when I am already feeling immense stress like most of the world. No, I wouldn’t have died without the meds, and I wouldn’t have gone through any kind of shock-inducing withdrawal from the sudden stop (these are real life consequences of abruptly stopping some medications). For me, suddenly stopping this medication meant that my incredibly debilitating, incredibly painful chronic illness, which had just been coming under control for the first time since August 2019, could have flared again with full force. If that had been the case, or if that is ever the case in the future, it is unknown if Enbrel could catch up and bring me the same relief it once did, as it is not a medication one can just stop and restart willy nilly and expect the same results. I might have to start all over again with a new medication, which anyone with a chronic illness will tell you is as expensive as it is tedious and exhausting.
Is it too much to ask that UPS be reasonably discerning when it comes to what parcels they choose to delay during this crisis? Amazon says they’re doing it, and they don’t even ship medication. Is it too high of an expectation for UPS to employ a triage system to ensure that instead of Sally getting her bread machine on time, Frank will get his insulin without needing to spend a week reordering it so he can LIVE?? Is it too much to ask that UPS not be so cavalier when handling perishable items so they don’t contribute the appalling amount of waste we as a society simply cannot afford anymore?
Don’t
get me wrong.
I
am
very
well
aware
that
hoarding anything, especially essential items like medication,
creates serious
problems
of its own (like
the delivery delays that started all of
this,
for an example,
and creating scarcity and even waste in the
form of expired
and
unused medication). I
try not to be a prophet of doom who contributes to the
panicked state so many of us are falling
victim to, but the objective fact is that any
one of us
may very well have
to go without our medication for a period
of
time. You could
end
up losing all the progress you’ve made like me, or you could
end up in the ER, or
you could
suffer even
worse
consequences than that.
That
is the reality UPS has shown
me this week.
I feel morally compelled to suggest that all medication-dependent individuals build up supplies for the time being to keep themselves safe, and so I am writing my first post in years in the hopes that I might spare some of my own the same pain. Normally this would be the last advice I would give, but I challenge anyone to please give me a better option.
Talk to your doctor and come up with a plan.
***PSA #2: In order to start stockpiling surplus medication, you must speak to your prescribing physician!!! DO NOT EVER under any circumstances adjust your own doses or skip doses to conserve medication without consulting the prescribing physician. Doing so is incredibly dangerous and will piss off your medical team like nothing else will.***
It may be possible for your doctor to prescribe a back-up dose or two of essential medication with each refill so that you have it on hand in case of a delay. It might also be possible for your insurance company to approve larger refills (i.e. a 90-day supply as opposed to 30-day) to give you breathing room while the delivery system catches up to demand. Your pharmacist can also offer professional advice on remaining safely medicated through this crisis. Keep in mind that it is illegal to hoard controlled substances. Be sure to ask your doctor and pharmacist what to expect if you miss a dose of your medication before it happens so that you don’t have to scramble for that scary information on top of everything else you’re probably dealing with.
Now before anyone reading this goes nuts, I am not advocating that we should all stockpile enough medication to get through the next year or half a year or the next several months. Personally, I feel comfortable having a 1 month surplus of necessary medications, whereas before this fiasco, I was perfectly comfortable with the traditional 3-day overlap most insurance plans allow. That of course is subject to change with the winds of this pandemic and its effects.
Another bit of advice for the medication-dependent is to not schedule medication deliveries for Fridays or Saturdays. This might not be possible for some, since people do have lives and jobs and things and someone has to be present to accept these expensive and important deliveries, but do what you can to avoid those 2 days so that if there is an issue, customer service is more likely to be around to help. You'll also be less likely to have the non-delivery day of Sunday to contend with.
For the general public: the next time you feel like berating a delivery person because your toilet paper shipment arrived a few days after the shipping date you paid for, please remember some of us are having our health ruined as a result of over-buying. Your package might have arrived late in favor of making space for a parcel that kept a vulnerable person healthy. The next time you shop on Amazon, please stop and ask yourself if you are ordering something that you honestly need at this time before proceeding to check out. If it can wait until the parcel post system catches up with this increased demand, then kindly wait to order or choose relaxed shipping options regardless of the speed you qualify for just until we all either get back to normal, or adjust to this new normal.
For UPS and all other carriers: please please PLEASE employ a system of parcel triage to ensure this doesn’t happen to again. Chronically ill individuals like myself are already more vulnerable to this pandemic than the general public. Your haphazard and decidedly uncaring response to the crisis has left chronically ill and medication-dependent people out in the cold. You are creating an insane amount of stress for individuals who are already stressed to their limits. In the meantime, please make a very public, detailed and honest announcement alerting all those who use your services for life-sustaining items that the medication and equipment they require to function might very well be delayed along with their neighbor’s Nicholas Cage pillow, and that they need to plan accordingly to protect themselves.
For pharmacies: when shipping time and temperature sensitive medications during a crisis, the label cannot be clear enough. I understand that pharmacies must respect the privacy of patients both ethically and legally, and it's no one's business that anyone is taking medication at all, nor do we want to give a thief hope of finding some worthwhile drugs inside, but perhaps it's time for US pharmacies to employ a "ESSENTIAL ITEMS: DO NOT DELAY" label when applicable in addition to the usual labels. Just a thought.
TLDR? UPS and other post carriers currently have no choice but to delay delivery of some packages. Space, delivery personnel, and hours in the day are all finite resources, while the demand for them seems infinite. What UPS and other carriers do have is the information necessary to make smart, respectful decisions about which packages they delay: all they have to do is glance at the boxes. UPS chose not to utilize that information in my case and likely other cases, contributing to the medication scarcity we are currently seeing and leaving the most vulnerable members of our society without the medication they need to function and to survive.
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Some glorious day we'll hug in Heaven Megan, May God bless you, in our Lord's Jesus Christ holy and beautiful name, Amen.
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