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Capsules of Adderall XR

The Food and Drug Administration confirmed a nationwide shortage of the pharmaceutical Adderall in October and that set off a great hunt among consumers, including parents of children with ADHD.

Jenny Kane

I’m on a wild goose chase for ADHD meds for my kid. Wish me luck.

Like many people with ADHD in their orbit, I have spent the better part of this school year chasing down much-needed prescription medication. It is a monthly mad dash among those who have the time, transportation and resources to seek it.

On my personal search list is Concerta, a stimulant pill my son takes daily. The FDA confirmed a nationwide shortage of Adderall in October and that set off a chain reaction as doctors and patients considered alternatives, such as Ritalin, Vyvanse and my son’s medicine, Concerta.

I quickly learned that one pharmaceutical was not a perfect substitution for another, another factor I had to weigh in my hunt: These drugs all have different dosing and time releases, which can be less effective for a patient or cause new side effects.

My now 13-year-old son was diagnosed with attention deficit hyperactivity disorder, or ADHD, at age 9. I remember being struck by the poetry of his self-assessment in third grade: “My body goes everywhere because my brain goes everywhere.”

A Walgreens pharmacist at night

Shortages of drugs such as Adderall, the antibiotic amoxicillin and the diabetes drug Ozempic have tested retail pharmacies at Walgreens and CVS as well as the patients that seek prescriptions.

Marcio Jose Sanchez

Like many with ADHD, it took years for us — working with an executive functioning coach, teachers and just plain old trial and error — to find the right management for his diagnosis, and he now has a system that works. Medication is an important piece of that during the school year, and we ration to stretch out the bottle. He takes weekends and summers off, and we have prioritized test days when our reserves are running low.

The kind pharmacist had seen parent after parent scrambling to get these meds, so she rang up every discount she could find to get it to $82. A mitzvah.

We just needed one more refill to get him through June. My husband and I split a list and called 12 pharmacies. Our usual Walgreens said they had it, and I immediately ran over. When I arrived, they didn’t have the right dose. Would they tell me when it is back in stock? No. Could they send the request elsewhere that might have the appropriate dosage? Another no. In Illinois, pharmacies can’t transfer prescriptions for Schedule 2 drugs, which include stimulants, between locations, and patients can only get a 30-day supply. For most other meds, they can get a 90-day supply.

Another pharmacy didn’t have the generic, and our insurance carrier, Blue Cross Blue Shield, wouldn’t cover the brand name. We usually pay around $10 a bottle, for 30 pills, when supply is normal. But without insurance coverage, the brand name is $500. Hard pass.

We finally found the right medicine at the right dose at a nearby CVS. When I arrived, I found out CVS is out of network for us. The 30-day supply would be $300. Absurd, but after days of trying, I relented. The kind pharmacist had seen parent after parent scrambling to get these meds, so she rang up every discount she could find to get it to $82. A mitzvah.

Sadly, there’s a lot of privilege baked into this frustrating goose chase. We have good insurance that covers us in most cases; had time to call a bunch of places to find the right drug; had the transportation to frogger around to the various pharmacies; and could pay the high fee when we found it. And still, it took days and tons of research to get 30 pills for $82. Without any of that cushion? Unnavigable or impossible.

“If you have a patient with ADHD who struggles with executive function, and has anxiety and depression symptoms, how are they supposed to track all of this down every month? They can’t,” said Rebecca Levin, a therapist in private practice.

My friend Heidi Auriemma has two children on medicine for ADHD diagnoses. She and I often share intel on where to find the pills, an above-board drug network for desperate moms. She has a paper prescription, which she can present whenever she finds the right pills at the right dose. “The game is not fun,” Auriemma said.

Lincoln Square mom Jennifer Howell has been on the hunt for Adderall for her fourth grade son since January, when his dose changed.

She makes a list of pharmacies the night before, in order of when they open to maximize efficiency. In March, they called 15 pharmacies, including some downstate, before they finally found one an hour away.

“The medication is an additional layer of stress,” Howell said. “It’s very Hunger Games.”

Although Adderall is officially no longer on backorder, some of the extended release doses and generics — which are more likely to be covered by insurance — are still hard to find, and the domino effect on other drugs has not yet abated.

The reasons for the shortage vary. On the supply side, there is a shortage of the raw ingredients; drug companies have a thin profit margin on generics so have little incentive to ramp up production; and amphetamine, an element of Adderall and Vyvanse, is a controlled substance regulated by the Drug Enforcement Administration. That limits how much a drug company can get its hands on in a given timeframe. As NPR reported, drug makers are blaming the feds, but the feds say many haven’t used their quota — the limit on how many of the ingredients for amphetamine they can get — so they won’t increase it.

But demand has also surged. More kids and adults (anecdotally, I have three friends over 45 who were just diagnosed this year) were diagnosed in the wake of the pandemic. Restrictions also were lifted to allow doctors to prescribe medication via telehealth without seeing a patient in person first.

Levin said it’s not just that the pandemic has resulted in an increase in diagnoses, but also that “people are accessing mental health services more because the pandemic lessened that stigma.”

“His brain isn’t wired in a way that makes everyday life normal and easy. Not medicating him would be like telling a diabetic, ‘You’re fine, you don’t need insulin.’ ”

Chicago pharmacist Christine Krogmann told me that, between shortages of ADHD meds, plus the antibiotic amoxicillin and the diabetes drug Ozempic (which has a side hustle as a weight loss medicine), there are 60 items in her queue each day that she can’t order. “I spend half my day on these shortage problems.”

The impact on patients can be significant. Kim Nowak, a licensed clinical social worker at NorthShore University Health System’s department of psychiatry and behavioral sciences, described a patient who substituted one ADHD medication for another amid the shortage. It caused a side effect of anxiety that his original medicine had not.

“The shortage caused a problem where there are no good alternatives for some people,” Nowak said. “They just need their medicine.”

Howell’s son has described his unmedicated days as feeling like when you put a fork in a light socket. “His brain isn’t wired in a way that makes everyday life normal and easy,” Howell said. “Not medicating him would be like telling a diabetic, ‘You’re fine, you don’t need insulin.’ This is lifesaving stuff for a lot of people.”

There are a lot of shrugs around when all of this could end, or if it ever will.

Another one of my sons was just diagnosed with ADHD. We will spend the summer experimenting with meds and doses to see what works. Come next school year, I will have two prescriptions to chase every 30 days. May the odds be ever in my favor.

Rebecca Little is a freelance writer currently working on a book about pregnancy loss. She lives in Park Ridge.

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