About 1 in every 10 people in the US who uses Adderall or similar combination drugs to treat attention-deficit/hyperactivity disorder (ADHD) has been affected by an ongoing shortage, a new analysis suggests.

The US Food and Drug Administration announced that Adderall was in shortage in mid-October 2022, and the share of people with ADHD who filled their prescriptions for Adderall and related medications plunged in the following months.

In an exclusive analysis for CNN, data from the health data platform Truveta shows that the prescription fill rate for amphetamine/dextroamphetamine medications fell from nearly 49% in October 2022 to a low of less than 41% in February 2023. Overall, the average monthly prescription fill rate was 11% lower in the first half of 2023 than it was in the first half of 2022, and it did not show steady signs of improvement through the end of 2023.

When broken down by age, the data shows that adults were consistently more likely to fill their Adderall prescriptions than children, but adults saw more substantial decreases in fill rates after the shortage was announced. For children, fill rates started to increase in the second half of 2023 – a consistent pattern around the time to return to school – but did not rebound to levels seen in early 2022.

Truveta’s database of electronic health records includes more than 100 million patients across all 50 states. This analysis focused on a set of more than 336,000 people who had an ADHD diagnosis and who had filled a prescription for amphetamine/dextroamphetamine between January 2016 and December 2023. Patients were considered eligible for a monthly prescription fill if they had filled one within the previous two years.

Although Truveta’s database includes records for nearly a third of the US population and covers nearly a fifth of daily clinical care across the country, the findings from this analysis may not be fully representative of nationwide trends.

Prescriptions for medications used to treat ADHD surged during the Covid-19 pandemic, especially among young adults and women, one study found.

This increase in demand, coupled with the residual effects of manufacturing delays that one key drugmaker experienced last fall, are among the “many factors” contributing to the shortage, FDA Commissioner Dr. Robert Califf and Drug Enforcement Administration leader Anne Milgram wrote in a joint letter last summer.

Federal agencies have been interested in understanding why prescription rates have increased recently, along with the methods for diagnosing ADHD, particularly related to misuse and diversion of medications like Adderall, said Dr. David Goodman, an assistant professor in the Department of Psychiatry and Behavioral Sciences at the Johns Hopkins School of Medicine who is also on the executive board of the American Professional Society for ADHD and Related Disorders.

“The question is, ‘What is now perpetuating the shortage?’ And that’s not a question that’s been adequately answered,” he said.

‘One more piece of anxiety’

Mary Beth King, who works as Truveta’s social media director but was not involved in the new analysis and spoke to CNN about her personal experience, was diagnosed with ADHD about a decade ago, when she was in her late 20s. After a few months of trial and error with her doctor, she landed on a treatment plan with an Adderall prescription that best helped her manage her symptoms – primarily the inability to focus and severe anxiety that can look and feel like depression.

But it’s been about a year and a half since she’s been able to fill her Adderall prescription in a “totally uneventful” way, she said. From October 2022 to October 2023, she recalls being able to fill her monthly prescription less than half of the time.

“It’s troubling to be on this medication that helps regulate so much in my life and then suddenly not have access to it,” King said. “It is a roller coaster. It’s one more piece of anxiety that a person who’s already very prone to anxiety doesn’t need.”

For her and many others with ADHD, Adderall is much more than a recreational drug or a study aid that helps a college kid pull an all-nighter, as some stereotypes may suggest. It can have “concrete negative impacts” on life, King says, affecting work, relationships, personal safety and more.

“I can drink a bunch of coffee, and there’s certain things that I can try to do to help some of the side effects,” she said. “But there’s no coffee for depression. You really need medication for stuff like that.”

Treating ADHD with Adderall can help reduce impulsivity, improve attention and focus, and manage feelings of anxiety. Inconsistent access to treatment can be very disruptive – and dangerous – for people with ADHD, experts say.

“It would be like ordering glasses and not being able to get them for months. I mean, how are you going to function in the world without your glasses?” Goodman said.

People with ADHD are at increased risk of premature death and other adverse health outcomes, but a recent study out of Sweden found that treating the disorder with medication can help reduce the overall mortality risk.

“Undertreating ADHD is not without consequences,” experts from the New York State Psychiatric Institute and Columbia University Irving Medical Center wrote in an editorial published in the medical journal JAMA last month.

The Adderall shortage can have a compounding effect on people who are also trying to manage their ADHD in ways that complement the medication, said Dr. John Mitchell, an associate professor in psychiatry and behavioral sciences at Duke University School of Medicine. As a clinician, he performs ADHD assessments and works with patients through cognitive behavioral therapy and other non-medication treatments.

Strategies that help people with ADHD establish routines are a common target in therapy, especially around daily medications, he said. But that’s becoming more challenging to address as patients decide skip or ration doses because of the shortage.

“Breaking a routine because the medication isn’t available is going to put a lot more a lot more demand on [patients] to regulate their behavior,” Mitchell said.

People with ADHD can often struggle with regulating emotions, and struggling to access medication can create an immediate stress response.

“If the medication is having its therapeutic effects, patients are able to adopt a lot of strategies more efficiently than when they’re not treated with medication or undertreated with medication,” Mitchell said. The shortage “really increases the stress that these patients are carrying, and being in a state of distress is going to make it more difficult to learn the strategies and to implement them in a consistent way.”

A lack of control

Before the shortage, King would proactively refill her prescription as soon as she was able, so she would never run out. But over the past year and a half, she said, she has taken very conscious steps to try to stretch her medication supply and plan her life around the effects.

“Workwise, if I knew that I had a day where I had a bunch of meetings and also a bunch to get done, I would take my full dose. But then I would recognize that, ‘OK, tomorrow I might not be as productive. I may only get the bare minimum done,’ ” she said. At home, during hours or days that she needed to rest, she and her husband would coordinate care for their toddler.

Internal turmoil could sometimes lead to feelings of inadequacy, she said, but a strong support system – including an understanding manager and a supportive husband – helped. However, the uncertainty of the broader shortage has brought its own set of negative feelings.

“I’ve done a lot of therapy, so I feel like I’m much better now than I was before at recognizing when I need help, when I need to raise my hand, when mentally I’m not doing well,” she said. “That definitely helps. On the other side, no, I don’t feel like I have any control.”

A few months into the shortage, King also explored different medications and doses so that she would get whatever she could find in stock. At one point, she said, a pharmacy rejected her from filling any prescriptions because she had too many on file. But testing various treatment options was far from ideal, too.

“You don’t want to be on one of these medications if it’s not going to be really effective for you. It’s not something that you want to play around with,” King said.

King says she has seen some hopeful signs in recent months that the shortage may be easing.

“I previously had been checking my pharmacy app every day to see if I could add it to my cart and get it scheduled for delivery,” she said. Recently, “it hasn’t been nearly as challenging.”

But the stress remains.

“I have, I don’t know, two weeks worth of my last prescription in my pill bottle,” she said last week. “And I’m like, ‘Oh, my gosh, am I gonna be able to get in to see my doctor in time to get this refilled? And if I can, will I even get it?’ ”