The shortage of stimulant medications like Adderall has, perhaps predictably, exploded into shortages of similar medications like Ritalin, Vyvanse, Concerta and others — causing havoc for patients, including one woman who called nearly 100 drugstores in one day in an attempt to fill her prescription.
While Adderall, a stimulant approved to treat Attention Deficit Hyperactivity Disorder (ADHD), has been hard to get consistently for some time now, only in the last few months has the problem expanded and deepened.
I have a friend in Southern California who sent up a flare late last week saying she has narcolepsy, and is in dire need of Ritalin, the stimulant prescribed for her by her doctor. My friend is Lindsay Scola, 40, who lives in Marina Del Rey, Calif., and works as a writer and speaker on sleep disorders, as well as advising nonprofits and campaigns on Hollywood engagement on social issues. Her narcolepsy is under control with Ritalin, but not without it.
She explained that it’s not just “more of the same” Adderall shortage, but a new and complicated medication shortage for people in need of a variety of controlled substances treating ADHD, narcolepsy and other conditions.
What is causing the shortage?
The initial Adderall shortage, which began last year, is partly demand-driven and partly a manufacturing problem, The Washington Post reported. “Prescriptions for Adderall, a stimulant that is approved to treat ADHD, rose more than 30 percent over the past five years and accelerated during the pandemic, according to data reviewed by The Washington Post,” The Post wrote. Telemedicine during the pandemic drove demand, making it easier for patients to get prescriptions without actually seeing a doctor. Nearly 40 percent of all prescriptions for stimulants last year came via telemedicine, The Post reported.
The Food and Drug Administration reported the shortage last October, but people had been talking about it well before that.
(Related earlier post: ADHD medications: Getting Adderall and similar meds on time.)
Adderall is a Schedule 2 controlled substance, under Food and Drug Administration rulings, and as such is limited by federal regulations in distribution. The medications must be prescribed in limited increments — one month — so you can’t lay in a supply for a rainy day.
Adderall can also be used without prescription as a stimulant by people without ADHD, for recreational use or to focus on a task like writing a paper or meeting a deadline, and that, Scola said, has colored news reporting — making it seem like a “nice to have” but not a life necessity.
Getting Adderall and similar medications has been challenging for some time. We posted this piece in 2021 by a pharmacy technician who has ADHD and wanted to make a handbook for people to make sure they get their ADHD medications. Since we posted this, the problem has gotten a lot worse.
On top of increased demand, and some supply-chain and labor shortage issues at manufacturers affecting some production lines, a secret 2021 settlement in an opioid case with three top U.S. drug distributors kicked in to make more limits on medications like Adderall and other controlled substances.
“In July, limits went into effect that flag and sometimes block pharmacies’ orders of controlled substances such as Adderall and Xanax when they exceed a certain threshold,” Ike Swetlitz writes over at Benefits Pro. “The requirement stems from a 2021 settlement with the US’s three largest drug distributors — AmerisourceBergen Corp., Cardinal Health Inc. and McKesson Corp. But pharmacists said it curtails their ability to fill prescriptions for many different types of controlled substances — not just opioids. Independent pharmacists said the rules force them come up with creative workarounds. Sometimes, they must send patients on frustrating journeys to find pharmacies that haven’t yet exceeded their caps in order to buy prescribed medicines.”
Controlled substances have many limits. A Schedule 2 controlled substance like Adderall is limited in distribution because of the potential for dependency or abuse — meaning that the 2021 court case settlement limiting distribution of, for example, opioids can also limit the pharmacies’ supplies of controlled substances like Adderall and Ritalin, used for ADHD, narcolepsy and other conditions. Adderall and Ritalin are not the only Schedule 2 substances: Morphine, methamphetamine, PCP and cocaine are among the Schedule 2 substances.
Scola said that because of the Schedule 2 limitations, she gets refills on “the same schedule as cocaine and methamphetamine. You need to get a new prescription from your doctor every month to get it refilled and cannot get the new prescription until the last day of your previous prescription.”
What happens when you can’t find meds
Scola said she first noticed the supply problem in December. She had been getting different generics without knowing it, she said. “The salts are different between the generic and the brand-name medications, but I didn’t realize it,” she said in a phone interview. “It is a different medication, and I was feeling very different from month to month, because they were different medications. And some months I would feel great, and then the other ones like, I would feel awful. Then, in late January was the first time that the pharmacy was saying that they didn’t have the medication at all.”
She called about 15 drugstores in January and finally filled the prescription, she said. but she was told it would be only for two weeks.
Then, on Friday, April 7, needing another refill, she said she called 100 drugstores up and down the West Coast. Her parents live in Seattle, she said, and she called them to see if they could fill the prescription. A friend with Canadian connections called to see if it would be possible to go to Vancouver to buy Ritalin.
“Or maybe I need to walk around on the University of San Diego campus and tell people I have a big paper to write,” she joked.
(Experts note that fentanyl is showing up in the illicit stimulant supply in the U.S., including in fake Adderall. An amount smaller than a grain of sand can easily kill a person. Anyone who actually takes that route should consider purchasing fentanyl test strips and testing their drug before ingesting it.)
Pharmacists have suggested that she use a different medication, she said, but she is now on her 14th combination of medication — knowing that the medications are not interchangeable tor her.
She said some news coverage has been not great, characterizing the shortages as “a minor disturbance,” because some news coverage suggests that Adderall and similar meds “make life better for people, but it’s not necessary.”
She said people like her, with narcolepsy, are incapacitated by the lack of medications. Before diagnosis and treatment, she had brain fog, night terrors and sleep paralysis, and was constantly exhausted — and constantly seeking a diagnosis. Once she found it, she said, she could function again. But without medication, no.
“I can’t drive” without medications,” she said. “I’m canceling meetings. I have a doctors appointment in Beverly Hills on Monday morning, and I think I should be able to drive there. But I have a physical therapy appointment in the South Bay on Tuesday at 4:30, and I know I can’t drive there without medication.”
This is an “invisible disability,” Scola said. You might not know that your surgeon or your accountant or your employee or your train conductor is using Ritalin or Adderall or Vyvanse — until that medication is not available. Then the consequences can be severe — which is one reason why people with ADHD or narcolepsy are not public about their histories, she said. But if the current climate requires that a person needing these medications spend hours and hours trying to fill a prescription — the impact is wide.
She found a pharmacy
She finally found a small pharmacy on Friday that agreed to fill her prescription. They apparently were not having trouble with the limits imposed by the court settlement, she said. But they did want her non-controlled medications moved to their pharmacy — to make sure that their orders for controlled substances did not trigger the same problem other drugstores had been encountering. (Apparently under the court settlement, the limits on pharmacy Adderall and Ritalin supplies depend on some proportional level of purchases of controlled and non-controlled medications.)
She said a couple of the pharmacists she spoke with sounded “beaten down.” One told her, “You have no idea how hard this has been for pharmacists.”
There’s nothing they can do, she said: “It’s awful for them.”
One pharmacist told her: “We were supposed to have gotten a shipment yesterday that was supposed to have Adderall, Ritalin and Vyvanse in it. This is the first time we stopped getting Vyvanse too. And so now there’s a whole nother group of people that I have to disappoint.”
[Update: In early May, for her next refill, Scola heard from the pharmacy she had been using that they would not have Ritalin. They said another pharmacy in their system would; so she needed to transfer this prescription (and all of her other ones) to the new pharmacy. Only after the transfer would she hear if the move had been made in time for her refill, and if they had the medication in stock. This particular pharmacy cannot move prescriptions within its own system, so it has to be a new prescription every time. Late in the day on a Friday, she learned that the doctor’s office didn’t send the prescription, and that she could not talk to a nurse, but only leave a message. The pharmacy is closed on weekends.]
Pharmacists venting
Pharmacists on Reddit are venting about how difficult this has been for them. Read more here: A 3-month-old thread on “It’s getting harder for me to tolerate the abuse from patients over the stimulant shortage….”
The pharmacist wrote: “I’m trying to be as sympathetic as humanly possible to my customers but I’m sick of them ranting at me about how ‘I don’t know how to do my job’ and ‘it’s my job to get them their meds’ and blah blah blah blah. … I can’t go into the back room and cook you up some adderall for you and your kids. I don’t know why the manufacturers aren’t producing any and I do not have time to call around for you to every pharmacy available for you then to show up and argue about your copay because your deductible restarted and you’re too ignorant to pay attention to what plan you’re choosing…..
“Some lady actually had the nerve today to tell me I should be ashamed of myself for not getting her meds for her and was angry that she had to make phone calls to her drs office and other pharmacy’s after I gave her a … slew of suggestions. She was like, ‘isn’t this your job to find me my medication? You shouldn’t even be a pharmacist’. To in which I replied, ‘isn’t it your job to advocate for yourself for your medical needs as an adult?’ … Sorry…. Long shift.”
He’s both a patient and a doctor
Owen Scott Muir MD sent several email comments in response to my query about this topic. Muir is a dual board-certified child and adult psychiatrist who is a curator of the national educational module on ADHD through the American Academy of Child and Adolescent Psychiatry. Disclosure: Muir and I are on an online message board of healthcare people, and he joined in a conversation about this. He treats children and adults at Fermata Health and writes about healthcare at TheFrontierPsychiatrists.
“So as a patient (which I am) it’s forced me to change my medication to more easily available options for my narcolepsy, (modafanil prescribed by my doc instead of adderall) which sucks cause it’s messed up my vision (modafanil has dry eyes and thus variable visual acuity problems as a side effect, adderall doesn’t have that problem). It is maddening,” he wrote.
“Parents are calling all over the place and their life is revolving around securing these meds for otherwise severe impairments.”
As a doctor, he wrote:
“I have stopped taking new referrals with ADHD. I spend hours a week playing ‘on call’ doctor for patients and families who are just hammer calling pharmacies (9 a day in some cases).
“I’ve been prescribing to cali, Colorado, anywhere it is in stock if my patients happen to be able to travel there.
“I’m a psychiatrist of last resort, so my patients often have tried tons of stuff and one or other thing works for very specific reasons (patriot brand Concerta only for example, cause all the other generics do not have the osmotic pump mechanism that time-releases it correctly).
“It’s chaos.”
What can be done? “Fight back on prior authorization for brand name drugs,” he wrote. “These block substitutions.”
No information over the phone
Julie Flygare, the president and CEO of Project Sleep, a nonprofit that raises awareness about sleep health and sleep disorders, has narcolepsy. She said in a phone interview that the shortage had not affected her prescription for long-acting Adderall until recently. She wound up finding a refill at a hospital pharmacy, but not without some hiccups.
“When I called to find out if the pharmacy had the medication, they said they can’t tell me that over the phone, that my doctor had to send in a prescription, and then they would tell me,” she said. So the doctor sent the prescription to CVS, and they told her they didn’t have it, but would put in another request for it a week later, “at which point, I would have been out of medication.
“So then my doctor suggested a small pharmacy related with the hospital at USC.” She called the pharmacy to ask if they had it, and they wouldn’t tell her over the phone, but instead insisted on receiving the prescription. “And so I called them I was, Do you have it?’ and they’re like, ‘We can’t tell you over the phone. He has to send the prescription.’ So then he had to go through putting the prescription in. They didn’t have it, but they ordered it and they got it the next day,” she said.
It’s a farther drive for her, she said, but at least she has it. “I just felt bad for my doctor too, because they wouldn’t tell me if they had the medicine or not,” she said. “That creates a lot of extra work for the people working for my doctor, to send these prescriptions out a bunch of times.”
Shortage in Canada, and a doc who helps
A friend writes about how medication shortages have affected her mom, living in Canada and using opioids for severe pain:
“Last summer, the lack of ingredients for one her pain meds caused her to have to switch to a different drug. Suffice to say that it was rough going for a few months until the original drug was back in stock. The issue with controlled substances is that they are prescribed in monthly increments (bottom line, you can’t stock up) and so she is now fearful that it could happen again.
“The supply chain crisis is real. I had dinner with a friend in the OTC supplement business last night. Her company is also experiencing major shortages of key ingredients.”
Another friend wrote: “I have been dealing with this for my 13-year-old daughter, and one suggestion I have is to investigate whether brand-name availability is better than generic.
“Our insurance typically does not cover the brand-name version of my daughter’s medication — but after her doctor appealed on grounds of medical necessity, she is now covered, and we have found it much easier to find the brand-name drug.
“We are among the lucky ones. My daughter has a fabulous psychiatrist who advocates for her early and often.”
What it’s like to have narcolepsy
Scola has been public about her struggles with narcolepsy. Here is her Self magazine piece from last fall, in which she describes how she was misdiagnosed and incapacitated for years by a sleep disorder that was finally properly diagnosed and medicated.
“By the time I turned 35, I was more than just sleepy. I had terrible brain fog and memory issues, and I lost chunks of time when driving, washing dishes, or typing emails. My body was still doing the tasks, but my brain had gone to sleep. And as tired as I was during the day, I had night terrors and sleep paralysis. Night after night, I was awoken by a child’s voice asking to hold my hand. How would I know that I was experiencing a hypnagogic hallucination that needed medical attention?” Then she got the correct diagnosis and proper medication, she wrote.
But now, with her Ritalin medication not consistently available for months, she has been under stress — on and off of one generic or another with suboptimal effects. “I have had to fight every month to find a pharmacy with an availability, bouncing around between different generics that have wreaked havoc with my physical, mental, and emotional well-being,” she wrote. “I knew the generic was a different formula than the brand name but didn’t know that each manufacturer makes a different generic version.
“So you could do great with one version and get no effect, or worse, severe side effects from another.”
Many people who are in the same situation she’s in are unable to be public for fear they will lose their jobs, she said.
What it is like to have (or not have) Adderall etc.?
Reddit has some specifics.
“Yes, my home life will be rough for a few more days. Yes, I have elevated anxiety regarding my professional performance at work if my Rx is delayed again. Yes, my diagnosis and treatment changed my life in such a positive way.”
A pharmacist points to related problems: “I do purchasing for an inpatient pharmacy. It’s not just stimulants. It’s … EVERYTHING. It’s hard out here in pharmacy these days.”
“Not just C2s can’t get testosterone vials or clonazepam. Don’t even get me started with antibiotics lol”
Advice to pharmacists from pharmacists: “I’m sure many of you are already doing this but in case you aren’t, even if you have the med in stock, stop accepting scripts for these shortage medications from patients that don’t fill at your store. It’s hard enough if you help someone out from another store one time but these people will start having their refills sent to your store because they incorrectly assume since you had it once, you’ll have it again. I’m only filling ADHD meds and GLP-1 RAs for regular patients now as I don’t even have enough for all of them. The people who’ve been with us the longest tend to be most understanding. It’s not much but it helps.”
More about that murky court settlement
Explaining the somewhat murky court settlement, Swetlitz wrote:
“The ‘suspicious order’ terminology is a bit of a misnomer, pharmacists said. The orders themselves aren’t suspicious, it’s just that the pharmacy has exceeded its limit for a specific drug over a certain time period. Any order that puts the pharmacy over its limit can be stopped. As a result, patients with legitimate prescriptions get caught up in the dragnet.””
“Adding to the confusion, the limits themselves are secret. Drug wholesalers are barred by the settlement agreement from telling pharmacists what the thresholds are, how they’re determined or when the pharmacy is getting close to hitting them.
“The exact limit for each pharmacy is kept secret in order to prevent pharmacists from gaming the system, according to Krista Tongring, leader of the DEA compliance practice at Guidepost Solutions and a former agency attorney.
“The purpose, she said, is to keep pharmacies from manipulating “their ordering patterns so as to get around the thresholds.””
On Reddit, people are talking about this.
“My 89 year old mom has narcolepsy and has been on Ritalin all her life. Suddenly she can no longer get it at any pharmacy..she only has a few days of her old perscription left … does anyone know where she can can some??” The answer: “Everyone is having difficulties getting it. I would call all of your local pharmacies and then call her doctor to get advice asap. Going cold turkey at her age would be dangerous.”
What you can do
As always, we do not give medical advice. Here are some thoughts.
Scola said no one has come up with a good solution. Her pals at Project Sleep have had a phonebank of pharmacies going with other patients, she said.
Contact your doctor and see if there’s a solution near to hand. Perhaps another medication would be helpful? (Scola said the generics that are commonly prescribed did not work consistently well for her.)
Maybe you usually use a 5 mg tablet, but can’t find it. Can you find 10 mg and buy a pill-splitter? Is there an extended release version that might work for you?
Contact pharmacies beyond your standard pharmacy. Some may have more supplies than others. (Scola said she called 100 pharmacies in a day, so this may be an exercise in frustration.)
One person said she found a hospital pharmacy that was able to help her. Another said that while the big chains like CVS and Walgreen’s were not helpful, a smaller family pharmacy was able to help.
Experts note that fentanyl is showing up in the illicit stimulant supply in the U.S., including in fake Adderall. An amount smaller than a grain of sand can easily kill a person. Anyone who actually takes that route should consider purchasing fentanyl test strips and testing their drug before ingesting it.
Reddit has a page with lots of advice titled “How to outrun the stimulant medication shortage.” Again, we do not give medical advice, but you should know: they have observations like this: “Use local independent pharmacies if you can, because they often don’t have the same stock issues or the same patient load as mainstream retail pharmacies.” or “Outpatient hospital pharmacies or hospital-linked pharmacies may not be as affected by shortages as normal retail pharmacies, so it may be worth trying them. Make sure to look for one that also serves as the inpatient pharmacy for a hospital (usually also serves as the central pharmacy) or serves as that hospital’s mail-order pharmacy. You should also know that these pharmacies often process unusual amounts of medication for hospital inpatients, so if you use them, you will often get partial fills with a weird number of pills like 43 or 18.” or “With CVS Caremark you can call them (at the phone tree, say “override”) and you can ask for a “drug shortage override.” Many states have an order where they have to cover weird drugs and brand names due to the shortage.” or “Be careful upping your dose if you have bipolar disorder, as it may increase the risk of mania.” Also there is a listing of obscure medications, both amphetamines and methylphenidates. Thoughts about updosing and off-label stimulants are included. We do not give medical advice.
That same Reddit page has dozens and dozens of reports of workarounds, substitutions, recent updates and so on, sourced from around the Web. As in anything medical, we do not give advice, but you’ll find a lot here: “Concerta shortage appears to only be worsening” or “Get it mailed to you from Canada” or “You may be able to get a paper prescription and try different pharmacies (treat this like cash — some doctors may be unwilling, or unable, to replace it if it’s lost). Go in person with the paper and ask if they can fill it. If they can, great. If they can’t but offer to hold your prescription until they can, do not leave it with them. Take it and go to the next pharmacy. Repeat as many times as needed. A pharmacist or tech may be willing to tell you if/when they expect their next shipment, but they often don’t know. If they tell you it’s on backorder, chances are they don’t know when it’s coming, so keep coming back and trying them on subsequent days.” We do not give medical advice.
Some people trying to get through to a drugstore on their automated phone-tree line have begun to choose the option “if you are a prescriber” because it’s impossible to get through on the other phone-tree option for a patient.
Project Sleep is a non-profit organization dedicated to raising awareness about sleep health, sleep equity, and sleep disorders.
Reddit’s subreddit, r/ADHD, has information about this and other matters. They say: “We’re an inclusive, disability-oriented peer support group for people with ADHD with an emphasis on science-backed information.” Their megathread about drug shortage issues has many resources.
There are also other Reddit resources like the subreddit for ADHD women, r/ADHDwomen. As in anything else, peer-to-peer health information can be extremely valuable — and also, Dr. Internet can be completely wrong. Do your homework; talk with a professional.
Our page on how to save on prescriptions may have some useful advice.
Is an authorized generic drug a possibility? “The term ‘authorized generic’ drug is most commonly used to describe an approved brand name drug that is marketed without the brand name on its label,” the Food and Drug Administration wrote on its site. “Other than the fact that it does not have the brand name on its label, it is the exact same drug product as the branded product. An authorized generic may be marketed by the brand name drug company, or another company with the brand company’s permission. In some cases, even though it is the same as the brand name product, a company may choose to sell the authorized generic at a lower cost than the brand name drug. Here’s the FDA list of authorized generic drugs.
[Related: Earlier this spring, as the end of the Covid public health emergency was approaching, the Drug Enforcement Administration proposed a reduction in telehealth prescribing flexibility, which would have put further limits on patients’ abilities to get access to medications. The proposed new rules, requiring at least one in-person visit for any controlled substance prescription, brought a flood of objections and predictions that people using all kinds of controlled substances — not just Adderall and Ritalin, but also medications like buprenorphine for opioid withdrawals, benzodiazepine like Xanax for anxiety, Tylenol with codeine or coughs and testosterone for hormone deficiencies and gender transitions — would find the medications hard to get.
[Just as the emergency was expiring, the D.E.A. withdrew the proposed rule under fire, and the current flexible telehealth prescribing rules, relaxing the Ryan Haight Act’s restrictions, are in place through November 11, 2023. The situation brought to the fore objections to D.E.A. jurisdiction over matters relating to people’s health.]
