“This Cannot Be the Price We Pay to Function.”

February 22, 2024

I apprehensively open my prescription bottle and peer in. I pour its contents into my hand, double and triple checking my count of its contents. Dread washes over me; it’s time to get a medication refill.

The ADHD medication shortage that started in late 2022 – and still with no end in sight – has deeply and profoundly worn me down. I am exhausted. I am frustrated. I struggle immensely due to the extra time and effort I now have to invest to get the medication I need to function. Even though millions of us are affected by this shortage, I’ve felt isolated and hopelessly alone in navigating this overwhelming system that has failed us.

An Executive Function Gauntlet: The Outrageous Absurdity of Refills

I take both a long-acting and short-acting version of my ADHD medication, and have been doing so for a decade. Prior to the shortage, the process I followed to obtain medication was imperfect, but more doable than our current nightmare. I had grown accustomed to the task of getting a new prescription for each of my medications to bring to my pharmacy every month. I knew when I had to make an appointment with my doctor to request the prescriptions, and I diligently showed up to my pharmacy within the three-day refill window, as allowed by law, and was ready to wait the usual 45 minutes for both of my medications to be filled.

With the ongoing medication shortage, I only have about 10 blissful days a month where I’m not dealing with some aspect of refilling my medications. Now it’s not only a question of being within my three-day refill window but also relying on my medication to be in stock.

At every turn, obtaining the medication I need requires executive functioning – the very area that is impaired in ADHD, and for which medication, along with employing strategies and learning skills, improves. My prescriptions have gone from being filled on the same day to being filled on different days and then weeks apart. This means shifting things around to make room for more trips to the pharmacy, more phone calls to disgruntled staff, more things to complicate my day-to-day life, all while undermedicated. (As it turns out, living with impaired executive functioning sure takes a lot of executive functioning.)

[Read: How to Weather the Persistent Adderall Shortage]

More than once, I’ve been scolded by pharmacy staff for making the mistake of calling to request my prescription release one day too early. (As many ADHDers know, staying on top of dates is no easy task.) I was acridly reminded that this is a scheduled drug and that my refill is not due yet. Each time it’s happened, I say, “My apologies, thank you for your help,” silently chastising myself for messing up the dates, loathing that I have to start this process all again the next day.

I also started rationing my medication, skipping doses on weekends to make sure I could at least have medication to do my job. After a few months of this, my frustration gave way to panic when my pharmacy said it had no idea when the next shipment would arrive.

I once contacted 15 different pharmacies over three days, trying to find a location that not only had medication in stock, but that would be willing to take my prescription. Pharmacy after pharmacy told me that their location was no longer accepting new ADHD patients. One pharmacy even had the audacity to laugh at my provider when they tried to call my prescription in. This system, designed to prevent drug abuse, was now forcing me into the role of a literal drug seeker despite being on my exact same dosages for ten years – the irony of which was not lost on me.

One pharmacy was willing to take my prescriptions, but getting there and back would easily take me an hour, and they could only put me on the wait list. Another pharmacy was closer, and while they didn’t have my exact dosage in stock, they told me that they’d be able to fill my prescription if my doctor split my dose between two lower-dose pills. I hesitated, anxious to make the request because my doctor had already submitted and cancelled two sets of my prescriptions that month. I worried that the back-and-forth would flag me as a troublesome patient. Thankfully my doctor was willing to accommodate. Still, I thought to myself that this cannot be the price we pay to function.

[Read: The Real Reason ADHD Medication Supply Is Lagging Demand]

Then there’s the work of verbally calling to release my prescriptions, which can take anywhere from three minutes to a very literal two hours on hold, only to be hung up on. I can’t just leave a voicemail to release my prescription – there is no way to confirm they received it without calling in again.

At my doctor’s appointments, on the phone with the pharmacy, and at the pick-up window, I started venting my frustrations in the form of humor. I joked that this system is an executive function gauntlet for people with ADHD – it certainly wasn’t designed with us in mind! Yet these jokes only got an occasional weary smile. Meanwhile, I simmered, knowing this “joke” was my real life.

Trapped in a Solitary, Multi-Year Riptide

I have educated myself on the  shortage, reading endless articles about it. I have observed how the different agencies, producers, and regulators involved shift the blame. Yes, it is a complex system, but that does not diminish any one participant’s part in making it better or making it worse. I have written to Congress. I have listened to countless stories of the strife everyday folk endure to get their prescriptions.

Every story I hear makes me feel like each individual with ADHD is on their own little island. We’re able to send along messages in a bottle, but we’re unable to collectively make those in power recognize our stories and our pain. I am sick of feeling trapped in this riptide all by myself, subject to forces that I cannot control, powerless to take care of my own physical and mental health. I am saddened that there doesn’t seem to be a way for the 8.7 million of us with adult ADHD (and parents of children with ADHD) to collectively advocate or have a say in this process. We deserve a seat at the table.

A Seat at the Table: How We Can Make Our Voices Heard

The ADHD medication shortage cannot go on. It has caused far too much damage and pain for those of us who simply want to live and work and achieve what we are capable of by limiting the burden of this neurodevelopmental disorder.

I have done all that I can on my part – following all of the expert advice during this shortage – to independently manage my health. I am working toward medical school, and I have thought long and hard about what I’d do if I could magically fix this system. Perhaps new monthly prescriptions should only be required in the first year that a newly diagnosed patient is trying different ADHD medications and dosages. From there, documentation attesting to ADHD and the continued need for medication can be submitted to the DEA, insurance companies, and any relevant regulatory board in order for a patient to be granted the privilege to have their medication treated like any other normal, regularly prescribed medication.

Pharmacies would be able to better predict their orders of stimulant medication instead of having to turn people away with valid prescriptions because they’re already overwhelmed with managing this shortage. I do not deny that stimulant medication has potential for abuse, and a regulatory system is appropriate for this class of medications. But the bottom line is this: There must be a way for diagnosed ADHD patients who have a history of established care to be able to reliably obtain their medications.

But work must be done on all fronts. Individually, we are isolated. Yet we have power in our multitudes and in our stories. It’s time to start to #ADDUsUp. We can all be #ADHDvocatesForChange.

• Share your stories of and frustrations with navigating the ongoing shortage, plus ideas for how to make the world better for neurodivergent individuals on social media using the above hashtags.
• As you share your story, tag celebrities with ADHD and ADHD organizations/platforms and demand that they unabashedly call out the shortages and seek not just answers, but change.
• Write to your U.S. representatives, the DEA, and the FDA, who must understand the real-life consequences of drug shortages and current policies for the millions of us who live with ADHD. Untreated or poorly treated ADHD wrecks lives, and medication is an important tool upon which we rely for our health and wellbeing. Highlight how policy at the governmental, regulatory, and healthcare system-level (including procedures at insurance companies and manufacturers/distributors of medications) directly impacts the care and wellbeing of ADHD patients.
• Submit comment to the Federal Trade Commission (FTC) and U.S. Department of Health and Human Services (HHS), which are seeking public input to understand how lack of competition and contracting practices may be contributing to drug shortages. The deadline to submit public comments is April 15, 2024.

Together we can elevate our voices, share our experiences, and demand more of our institutions and those in power. If we, a bunch of executive functioning-challenged ADHDers can get organized and start a movement, then those with power have no excuse for ignoring breaks in this system. It’s time for them to do their part, too.

ADHD Medication Shortage: Next Steps

Elizabeth (Elle) Sharrard is an aspiring medical student and a proud #ADHDvocate who hopes to empower people to use their voices to improve the world for all. Elle’s blog post inspired the creation of ADDitude’s call-to-action scripts for contacting representatives about the ongoing ADHD drug shortage.

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