For Jessica McCabe, who has attention deficit/hyperactivity disorder (ADHD), moving to Seattle meant navigating major hurdles to access her medication. First, she couldn’t find a psychiatrist who treated adults with ADHD. Once she did, her new health insurance refused to pay for the medications that worked best for her, forcing her to try cheaper drugs, which either didn’t work as well, or came with side effects.
According to the National Institute of Mental Health, an estimated 4.4 percent of adults have ADHD. For people with the disorder, accessing medication such as Adderall, which is considered a first-line treatment, has always been difficult, due to factors such as a shortage of trained healthcare professionals and restrictions required for stimulants, which are controlled substances because of their potential for abuse.
But now the problem is worse. In the past year, as the FDA declared a shortage of Adderall, making it more difficult to access ADHD medications, leaving many patients unable to fill their prescription. The shortage, due in part to a lack of the active ingredient used in Adderall, and an increase in the number of prescriptions, has stretched on for months, with no clear end in sight. Without the medication, ADHD patients are concerned about job loss and, in some cases, self-harm.
Although ADHD is commonly thought of as a children’s disorder, characterized by little boys who just can’t sit still, it is a far more complicated and pervasive condition, one that can have a significant lifelong impact. ADHD impacts the parts of the brain that control executive function, which is the ability to plan, prioritize and execute tasks, whether it’s completing a complicated, long-term project at work, or figuring out how to still get work done, while juggling the chaos of parenting young children. Executive function also affects several other skills, such as emotional regulation, time management, task-switching, and task initiation.
For McCabe, as the weeks stretched into months without her regular medication, she struggled to keep it together. Even with the behavioral strategies she’d developed—regular exercise, meditation, and therapy—she couldn’t focus enough to complete her work, she struggled to keep her impulsivity under control, while she found it even harder than usual to keep her emotions in check, especially during stressful moments. “My job suffered, my performance suffered, my self-esteem suffered, my sense of self suffered,” McCabe says.
Without her medication, without the support of her family and friends in a new city, without the usual comfort of feeling good about her job—hosting the YouTube channel “How to ADHD,” and writing a book on the topic—McCabe tried her best to cope, but soon began to contemplate suicide. “Meds are one of the things that helps keep me afloat,” McCabe says. Now, as she is watching the impact of the Adderall shortage unfurl across the country, she is getting daily emails, calls, and comments from others with ADHD, about their own struggles accessing their medication. Whether it’s worrying about filling their prescription that month or struggling to keep their job while unmedicated, she’s hearing from countless others going through similar situations, as they desperately try and keep their heads above water.
“This is not the first shortage of ADHD medicines I’ve seen in my career, but this is by far the worst,” says Jon Stevens, a psychiatrist who specializes in treating ADHD. Stevens, who first noticed intermittent shortages in the fall, is now fielding multiple calls a day from patients, who are unable to get their medication. “Here’s another disruption to their lives,” Stevens says, “after just coming out of a pandemic.”
Medication shortages are causing significant stress and anxiety
For Amy K, a nurse practitioner and mother of three children based in Maryland, the last year has been marked by a monthly scramble to find her Adderall, which she needs to manage her ADHD. Every month, Amy K spends hours on the phone each month, calling up to seventeen different pharmacies, to find one that has her medication in stock. When she can’t find her preferred dose, she settles for a less optimal one or medication, or she must pay out of pocket, because her insurance won’t cover what the pharmacy has in stock.
“I’ve sat and preplanned out a month, in the event that I don’t have medicine,” says Amy K, who asked that her last name be withheld to protect her privacy. This includes looking at what is going on at work and with her kids and husband, to decide which days she can survive without medication, and which days she can’t.
Along with these calls to drug stores, there is also the complication that every time she needs to have her prescription sent to a different pharmacy, her doctor’s office must issue a new electronic prescription and cancel the old one. She’s also had to fill her prescription at ten different pharmacies in the last year, a fact that will often get patients flagged as a drug-seeker. “Everything that gets you flagged, you’re doing,” Amy K says.
Meanwhile, Amy K has no guarantee whether the new pharmacy will have her medication. “Until the prescription hits the pharmacy, you have no idea” if they can fill the prescription or not, says Ari Tuckman, a psychologist who specializes in treating ADHD.
Without her medication, which she compares to wearing glasses, “you can probably get through the day, but you’re not going to be nearly as functional, and you’re probably going to make some stupid mistakes along the way,” Amy K says. Whether it’s focusing on her work or figuring out how to adjust her schedule to pick up a sick kids from school, life without medication is just that much harder. When she is medicated, “it’s never ideal, but I can come up with a plan,” Amy K says. Without medication, “I can’t figure out what the next steps are.”
Medications help address issues in executive functioning
“ADHD is a disorder of converting intentions into action,” Tuckman says. “Medication closes that gap between intention and actions.” People with ADHD often describe feeling stuck, unable to muster the motivation to do even basic tasks, or to switch from one task to another, even when they have a strong desire to do so.
These deficits in executive functioning can have wide-ranging impacts, with research showing that people with ADHD are at a higher risk for a number of negative life outcomes, which includes being more likely to be in accidents, develop substance use disorder, get divorced, drop out of college, and be unemployed or underemployed, compared to their peers without ADHD. People with ADHD are also at higher risk of developing other chronic health conditions, such as diabetes. “It’s harder to be careful taking care of your general health when you’re having troubles focusing, organizing, planning and executing,” Stevens says.
“Before being diagnosed, I just thought I wasn’t trying hard enough,” says Marissa Patry, a mother of four children, who was diagnosed with ADHD at the age of 32. Before her diagnosis, Patry struggled to complete basic tasks, confused as to why she just couldn’t get them done, even when she really wanted to. After going on medication, “I would just get up and do the task,” Patry says. “The difference is life-changing.”
As a number of studies show, individuals with ADHD are also at a higher risk for suicide, while long-term medication use helps decrease this risk. Given her own struggles when she was without her medication, including needing to reach out to a suicide hotline, McCabe is becomingly increasingly worried about the long-term impact that the Adderall shortage is having on the ADHD community. “I’m not only concerned about people losing their jobs, losing their relationships, or falling behind, I’m concerned that people will die,” McCabe says. “It doesn’t take much for us to drown.”