The Big Short

Why we are still waiting for meds

Photo by Towfiqu barbhuiya on Unsplash

When I was diagnosed in April of 2023, I had no problem getting a fill on my generic Adderall at my local Duane Reade (aka Walgreens, but I will never call it that). I had heard rumors about the shortage, so I was relieved when they had it available. However, after my two week adjustment dose ran out, my doctor called in the higher dose. They were out of stock, and as a result, I was unable to take my medication. I felt discouraged. I had been drowning, and someone tossed me a life raft. Then I watched that life raft slowly deflate. I had felt amazing for two weeks, and felt like I wound up right back where I started. One day I got so frustrated I just went to bed and cried.

Fortunately, that was the only time I had to wait for a fill. Until now. My medication has been out of stock since early December, and from what I’m hearing, there is not a bottle of Adderall or Vyvanse to be found in the entire city of New York. I didn’t use my medication when I had COVID, and I do have a bit of a stash, but it is dwindling. I am now resorting to skipping days or taking a half dose. A half dose doesn’t quite cut the mustard, but it is better than going without entirely.

Some people take “medication vacations”. Some people take weekends off, or are so terrified of addiction that they skip days to make sure that they can. I do not. I have ADHD every day. I don’t take this medication to be productive. I take it so I don’t suffer. My psychiatrist likens meds to corrective lenses for your brain, and I think that’s an accurate description. Without them, I can see, but everything is out of focus, and I struggle with emotional dysregulation (which can sometimes be debilitating).

If you’re someone with ADHD, or a parent of a child with ADHD, I am sure you have experienced this frustration at least once in the past year. You may be asking yourself why this is happening, and what you can do about it.

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The Problems

• Adderall is classed as a Schedule II drug by the Drug Enforcement Administration (“DEA”) here in the US, which is defined as having a “high potential for abuse which may lead to severe psychological or physical dependence”. Because it is a controlled substance, you can only refill once every 30 days, and you can be arrested for having it without a prescription. Adderall shares this classification with most narcotics - including OxyContin - despite the fact that deaths from all amphetamines pale in comparison to deaths from opioids. Legal amphetamines like Adderall are not usually the ones that cause death - that honor goes to meth (Adderall and meth are chemically VERY different, despite what people think). Let’s not forget that a perfectly legal drug - alcohol - kills over 130,000 people a year in the US, and you never hear about a vodka shortage.

• There is a cap on how much legal amphetamine can be manufactured in the United States per year. In 2020 and beyond - partially due to increased awareness about ADHD, and partially due to the rise of telemedicine during the pandemic - prescriptions outpaced manufacturing. The quotas for manufacturing are designed around anticipated need, and prescriptions did go up 10%. Combine that with labor shortages in manufacturing due to COVID, and you have a bottle neck, much like other industries who had a supply chain issue. Of course, the media chose to latch onto this and declare that there were a massive amount of unnecessary prescriptions due to telemedicine, and that ADHD was overdiagnosed. This of course is bullshit , and as I know from my experience, there are many undiagnosed adults out there who managed up until the pandemic. However, like most narratives, this one stuck. An already stigmatized thing is now more stigmatized, mostly due to the psychotic attitude about mental health and medication in this country. I can’t tell you how many people just casually refer to my medication as “speed”, like I’m twitching in a corner somewhere waiting for a fix.

• The third problem is that Adderall, Ritalin and now Vyvanse are mostly prescribed in their generic form. Generics are simply not as profitable as name brand drugs, and the US healthcare system is for-profit. The DEA recently increased the quotas, but according to DEA Administrator Anne Milgram, the manufacturers did not use all of the allotted materials, meaning they came up short a staggering one billion doses. Milgram claims that 17 out of 18 manufacturers have agreed to increase their production, but the DEA cannot force them, and as we know, profit is king in our capitalist hellscape. It remains to be seen if the manufacturers will follow through. My guess is that this problem will continue.

So what can you do?

• Call pharmacies before your fill. My bestie (who also has ADHD) and I have a system we call Dialing for Dollars, which is the horrendous task of calling up individual pharmacies in your area to see if your medication is available. This requires a lot of executive function and self advocacy, which many people with ADHD struggle with. It seems like a cruel joke, especially if you are unmedicated and trying to do this.

  
  ADDitude Magazine did a survey about the shortage, and one respondent gave a succinct statement about why this is so awful:

  “We, who lack executive function skills, are forced to struggle with managing the acquisition of the one thing that helps us function. One thing I know for a fact is that those who do not have ADD are incapable of understanding what it is we go through. It is a travesty.”

  Fortunately, organization is something I’m reasonably good at, partially due to the nature of my job. I made a spreadsheet with the name, address, and phone numbers of pharmacies in my area, and have a column for notes and information. If you have a friend or loved one who is willing to help you set this up, ask them to help.
  
  When you call the pharmacy, be pleasant and polite, and don’t sound annoyed or desperate. I use a script, which is as follows:

  “Hi, my doctor asked me to give you a call to see if you have a medication in stock?”

  Sometimes they will tell you that they can’t give you that information, in which case you hang up and make a note that happened. You can try again another day, as you may get a different pharmacist who is willing to help. If they ask what the medication is, you calmly give the name of your medication and the dosage. You can also ask for brand name (it will cost more and/or your insurance may not cover it). Here in NYC, they pretty much already know what I am asking off the bat, and are usually willing to help. I’ve actually had friendly chats with several pharmacists who are also frustrated. If the pharmacy has it in stock, call your doctor right away so they know where to send it. Unfortunately, this month, Dialing for Dollars has not worked.

• Ration your supply. Let’s say you wait three weeks for a fill, but then you get it. Then a week or two later, you have an appointment for another fill, and you actually get it. This means now you have three weeks worth of backlog. Hoard it. Take the oldest pills first and save the rest. You can also have days you skip taking it, take half doses, etc. The reason I’m not completely losing my mind is because I have enough to take a half dose at least for another few weeks (I didn’t take my medication when I had COVID). This won’t work for everyone, obviously, and its not recommended to split the extended release pills in half. Also, a half dose doesn’t work as well for most people. But its better than nothing.

• Increase your caffeine intake. Hey, its how we used to do it!

• Take supplements like magnesium and fish oil, eat healthy, exercise. These are for symptom management, and it won’t work for everyone. It works for me a little, but not enough. NONE OF THIS IS A SUBSTITUTE FOR MEDICATION.

The fact that we have to do any of this is ridiculous. We are not junkies looking for a fix, we are neurodivergent, and medication helps us function better in the world. In fact, being properly treated for ADHD reduces your risk of substance abuse dramatically. In fact, according to one study, in 2009 the rate of substance abuse was 31% lower among those prescribed medication for their ADHD. I don’t abuse my medication. Why would I? Adderall isn’t “fun”, it just means my life is easier. That’s it. The narrative around addiction and substance abuse in this country continues to be problematic. Hey, maybe if we treated mental illness/medical conditions properly, people wouldn’t feel the need to get fucked up all the time? IMAGINE.

People with ADHD are suffering from this shortage. Children are failing classes when they were once thriving. Adults with demanding jobs are finding themselves unable to perform. I had my first meltdown (what I thought were anxiety attacks…more on that later) since I started treatment. I’m struggling, and so many of us are struggling. This system is cruel, biased, and not based in science. I am glad the DEA is taking steps to address it, and god bless Congresswoman Allison Spanberger for her advocacy, but I remain skeptical that this problem will be resolved anytime soon.

I started this Substack in part to try and reduce stigma and raise awareness. We are not drug seeking and we are not looking for cheap thrills. We are trying to function in a world that is designed for neurotypical people. This issue makes me so angry, and other than writing to my elected representatives (AOC must be sick of hearing from my ass about multiple issues at this point), it makes me feel helpless.

My appointment for a refill is on Friday. Here’s hoping I will find a pharmacy that carries it, and I can stop cutting pills in half and skipping doses. At least for a month.