All Jennifer Howell wanted was to find medication for her son. Instead, she was caught in a maze of desperate phone calls to pharmacies and physicians.
Her son, Linus, had been diagnosed with ADHD in 2021 during the grips of the COVID-19 pandemic. Many of his behavioral traits — restlessness, impulsivity, difficulty focusing — suddenly made sense. When he was first prescribed medication, its effects were instantaneous.
“It was something that changed him within 24 hours,” said Howell, a Lincoln Square resident. “It was enough for us to cry, saying, ‘Oh God, I wish we had known.’”
Howell recalled how Linus, now 10 years old, described how he felt: “When my neurons are working, I’m basically a genius.”
The relief was short-lived. In October 2022, the U.S. Food and Drug Administration formally announced a nationwide Adderall shortage, leaving millions scrambling to obtain prescription stimulant medication. Over a year later, there’s no end in sight, and a tangled network of causes has made for no clear solution.
“It’s the single biggest crisis right now in clinical mental health,” said Greg Mattingly, president of the American Professional Society of ADHD and Related Disorders and an associate clinical professor at Washington University in St. Louis. “It touches everyone.”
ADHD, or attention-deficit/hyperactivity disorder, is one of the most common neurodevelopmental disorders in the U.S. An estimated 9.8% of children aged 3 to 17, or about 6 million adolescents, have been diagnosed, according to the U.S. Centers for Disease Control. Stimulant medications like Adderall mitigate its symptoms by increasing dopamine levels in the brain.
Access to prescription stimulant medications first began to unravel at the beginning of the COVID-19 pandemic. Physicians started reporting a significant jump in ADHD diagnoses. Research compiled by FDA-affiliated scholars indicated that prescriptions for stimulant medications among people aged 20 to 29 rose 30% from April 2018 to March 2022. There are multiple theories on why that’s the case, including the ease of telehealth, increased ADHD awareness and the added stressors of remote work, experts say.
“There’s some suspicion that working virtually seemed to really challenge individuals who had ADHD,” said Julie Carbray, a clinical professor of psychiatry and nursing at the University of Illinois Chicago. “Along with that was the recognition that ADHD can be diagnosed in adulthood, which is sort of a newer concept.”
Meanwhile, a major drugmaker began to experience an Adderall manufacturing delay, according to the FDA. When patients turned to alternative prescription stimulant medications, those too became scarce. Although the manufacturing delay has since been resolved, its long-lasting effects are exacerbated by unprecedented demand. Many pharmacies nationwide still have unpredictable inventory.
“It was just a horrible, perfect storm that really has trapped our patients from getting what they need to work, to perform at school, to be able to live their lives,” Carbray said.
Another hurdle: Because stimulant medication is a controlled substance, most people with ADHD can obtain only a 30-day supply at a time. It also means individual pharmacies can’t share where the drugs are available elsewhere — parents and patients have to contact each location, one by one.
When Linus’ Adderall runs out each month, Howell and her husband divide up a list of 20 pharmacies to call. The process can take hours. It takes even more time to drive to distant pharmacies.
Linus now only takes medication on school days to ration his supply.
“This is very real, and cognitively how he functions is dependent upon this medication being available to him,” Howell said. “It makes us feel like this system is not set up to accommodate people who are neurodivergent.”
It’s difficult to pinpoint a solution. The U.S. Drug Enforcement Agency closely regulates controlled substances due to a high potential for abuse and addiction, imposing quotas on manufacturers to curb production.
In 2022, manufacturers of amphetamine medications, which includes Adderall, only sold about 70% of their allotted quota, FDA and DEA officials said. That means about a billion doses were never made or shipped.
However, because drug manufacturers are private companies, neither agency can mandate increased production.
“We (DEA and the FDA) have called on manufacturers to confirm they are working to increase production to meet their allotted quota amount,” the agencies said in a joint statement in August.
The FDA told the Tribune that it can’t disclose specific production data because it’s considered confidential commercial information.
“The public should rest assured the FDA is working closely with numerous manufacturers and others in the supply chain to understand, mitigate and prevent or reduce the impact of intermittent or reduced availability of certain products,” FDA spokesperson Chanapa Tantibanchachai said in a statement.
The decreased production is likely also tied to the opioid crisis and the resulting backlash faced by manufacturers, Mattingly said. Many Big Pharma companies and some of the nation’s largest pharmacy chains faced a slew of lawsuits in recent years related to the handling of drugs and their role in the epidemic.
“In the background was the opioid crisis, and I think what happened is a number of the manufacturers, in particular generic manufacturers, became skittish about making short-acting stimulants,” Mattingly said.
Twenty-one-year-old Drew Goodman was diagnosed with ADHD in second grade. He started taking Concerta, another prescription stimulant, about two years later. Without it, he’s unable to manage his time, usually hyperfocusing on a singular activity.
“It’s just near impossible to stop doing whatever I’m doing,” said Goodman, a DePaul University student. “It makes it difficult just for day-to-day life.”
For a decade, he had no issues filling his prescription. Then, in 2021, it was out of stock at his usual pharmacy. It was the beginning of a monthly routine of tedious phone calls. There’s no alternative, he added — he needs his medication.
“It’s genuinely kind of dangerous,” Goodman said. “I’m not exaggerating, especially if I’m driving somewhere, I genuinely need it. It’s dangerous to drive without it.”
Kathryn Gray, a clinical pharmacist at the University of Chicago, is part of a team of physicians dedicated to medication access. A large portion of her work now revolves around locating drugs that treat patients’ ADHD. If the hospital pharmacy doesn’t have medication in stock, she’ll assist with the lengthy process of contacting individual stores.
“It’s been challenging to get adequate supplies of certain medications at any given time of the year,” Gray said.
The back order has also exacerbated health care inequality. Many patients aren’t able to drive to faraway pharmacies. Others have to pay hundreds out of pocket when they switch to an available medication that’s not insured.
“The general trend is most patients are very frustrated, very exhausted trying to deal with all of this,” Gray said.
Most psychiatrists now spend “one hour a day, a few times a week” trying to locate drugs like Adderall for their patients, according to Royce Lee, an associate professor of psychiatry and behavioral neuroscience at the University of Chicago.
“I would say every single one of my patients on Adderall and its derivatives will come across this problem,” Lee said. “It’s a very time-consuming process for everybody.”
It’s an added layer of stress on an already difficult disorder to navigate, said Rebecca Kiel, a Buffalo Grove-based therapist specializing in ADHD. Kiel has seen dozens of patients affected professionally, academically, socially and financially by the shortage.
“You’ve got people who are already struggling,” Kiel said. “Medical professionals prescribe medication as this tool, now take the tool away, and you have people struggling again with this anxiety, panic or worry because they don’t have the thing that they know was helping them.”
The crisis doesn’t appear to be abating soon. Even if Adderall was available, government agencies are wary of rapid influxes of Adderall and other prescription stimulant medications due to drug abuse, experts said.
The FDA added that it’s working to assist manufacturers with increasing production by expediting the review process. Additional supply of Adderall is expected to return in the coming months, the agency said. In October, the DEA also increased the production quota for ADHD medications with methylphenidate, which includes drugs like Concerta.
Physicians can continue to shift ADHD patients’ prescriptions to more readily available medication, though those in turn can experience shortages. Alternative treatment may also be more expensive for patients.
“It really is stressing the health care system,” Lee said. “This isn’t sustainable.”
For now, ADHD patients and parents like Howell must simply hope for the best each month as they scramble to obtain essential medication.
“It just makes me sad, and it gives me horrible anxiety to think about,” Howell said. “It’s just part and parcel of being one of the many parents with family members who have ADHD and can’t find medication.”