Charlotte Harrington said she’s become an expert at finding creative ways to get her ADHD medication. The 22-year-old Bethesda resident started noticing a shortage of Adderall over the summer, which has become much worse in the last month or two.
“I used to have to call 10 pharmacies; now I call 30,” she said. She keeps lists of pharmacies in her phone for that purpose.
Harrington said her ability to hyperfocus on one task to the exclusion of all else — common in people diagnosed with attention deficit hyperactivity disorder — works to her advantage when she has to spend hours on the phone chasing her medication. Her persistence in locating her meds means she hasn’t had to go longer than a week without them, she said.
She’s among the millions of people scrambling to fill their prescriptions in a nationwide shortage of stimulant medications used to treat ADHD, a psychiatric disorder that can make it difficult to focus, plan, manage distractions and control impulses. People with ADHD face declines in functioning at school, work, or interpersonal relationships when the disorder goes untreated.
A surge in ADHD diagnoses over recent years and particularly during the pandemic has led to increased demand for medications while supply has lagged behind, medical professionals and pharmaceutical industry experts said. The medications’ status as controlled substances regulated by the Drug Enforcement Administration is likely driving the shortage, they said.
Dr. David Band, psychiatrist at Columbia Psychological Associates in Howard County, said stimulant shortages tend to happen at the end of each year, sometimes starting in late November and lasting into January, but are usually confined to certain strengths of particular medications.
This year is different, he said, because now in February pharmacies “have no strengths of anything,” and the shortage doesn’t show signs of abating anytime soon. Band said about a quarter of his patients have had to either ration or go without their medications.
“There is a very understandable low-level kind of panic that we’re getting from people now,” said Richard Silver, a psychiatrist and founder of Thrive Emerge, a Columbia practice specializing in ADHD.
Scarce meds, plentiful barriers
Adderall, Ritalin, Focalin, and many others in short supply are more tightly regulated than other drugs to prevent misuse. But at the onset of the pandemic, Congress waived a 2008 law requiring an initial in-person evaluation before controlled substances could be prescribed via telehealth. This fueled a proliferation of online telehealth services focused on treating ADHD.
In December, the DEA announced that it would not increase production quotas for the ingredients used in stimulant medications from 2022 levels, despite the increase in diagnoses. Some experts feel the agency is acting out of caution following the opioid epidemic, when manufacturers were accused of oversaturating the market with pills.
But, while the controls regulating access to stimulants may be barely noticeable to people filling prescriptions when the drugs are plentiful, they can become nearly insurmountable obstacles during a shortage.
Harrington counts herself lucky that she has the time to call pharmacies and travel long distances to get her medication, and the money to pay out-of-pocket for it.
She often visits friends in Pittsburgh and has had some luck finding Adderall at “random Walmarts” in rural Pennsylvania, she said. Her insurance won’t cover prescriptions filled out of state though, so she pays about $190 for a 30-day supply. She can sometimes get her insurance to reimburse her, though the process is time-consuming and cumbersome, she said. Harrington once found Adderall at a pharmacy on a military base and had her uncle, a former Marine, pick it up for her.
When pharmacies are out of a stimulant medication, DEA regulations prohibit them from transferring the prescription to another pharmacy; rather, the prescribing provider must manually cancel and resend it. This means patients often must spend a lot of time calling around to find a pharmacy that has their meds, Silver said.
When a pharmacy is located, patients must then contact their provider immediately and hope they’re able to send in a prescription quickly before that pharmacy runs out, Silver said. It can take a day or two for busy providers to respond, he added, which can leave the patient at square one.
Sometimes, pharmacies will not say over the phone whether they have an ADHD medication in stock or when they will get more, citing restrictions for controlled substances. This has happened to Blaire Postman, a 52-year-old Baltimorean who works in sales for a large media company and who was diagnosed with ADHD around 2000.
Postman said there were times during the pandemic when ADHD meds were in short supply, and her psychiatrist, like many others, works in private practice and issues paper instead of electronic prescriptions. So Postman took her prescription door to door.
After a week’s delay getting her extended-release Adderall in December, Postman went to fill it again this month and was told the generic version she usually gets with no copay was out again — likely for months this time. Her insurance won’t cover the branded version, but she was able to purchase 30 days’ worth for $255.
Postman said if she has to continue paying out-of-pocket, she’ll need to reallocate some of the money she now puts toward paying off debt and saving for retirement.
Band said he has trained his patients to ask pharmacies if it would be a “waste of time” for their doctor to send in a script when calling, rather than asking if they have the medication in stock. He said sometimes this approach works, “depending on what pharmacist you get.”
Amy Darrow’s 15-year-old daughter takes Concerta — a time-release version of Ritalin — for a traumatic brain injury sustained about five years ago, which causes some of the same issues with focus and emotional dysregulation that kids and adults with ADHD experience.
Darrow said she was once able to get her daughter’s prescription partially filled, only to have the pharmacy refuse to give her the remaining pills when she went back. Band said pharmacies aren’t permitted to do partial fills of controlled substances, but when they do insurance often won’t pay for the latter part of the prescription.
Meds are “life-changing,” yet misunderstood
Silver said medications are one part of a “three-legged stool,” which, along with coaching and accommodations in the workplace or school, represent best practice in ADHD treatment. Dr. Sarah Edwards, director of child and adolescent psychiatry at the University of Maryland Children’s Hospital, said kids can also benefit from cognitive behavioral therapy and parent education.
Kids who are left untreated have higher rates of substance abuse later on and worse academic and career outcomes, Edwards said.
Adults with untreated ADHD are more likely to get in car accidents, lose jobs and get divorced, said Band. Some research shows ADHD can result in an average reduction in life expectancy between 9 and 13 years for adults when left untreated.
Edwards said much of the structure and routine that the workplace offers and which is critical to managing ADHD symptoms disappeared during the pandemic, as people tried to work from home while managing things like the competing demands of kids’ online schooling and fights between siblings. Preexisting struggles with focus and time management became untenable, and people began to seek out evaluations and treatment for ADHD as a result, she said.
Diagnoses may have risen among women in particular, continuing a trend that predates the pandemic: a CDC report found a 344% increase in prescriptions for medications used to treat ADHD for women aged 15 to 44 years between 2003 and 2015.
Postman said when she was diagnosed with ADHD more than 20 years ago, she’d been struggling at work: “I was always coming up with wonderful ingenious ideas that had nothing to do with what I was supposed to be doing.”
Postman said her ADHD causes her to feel overwhelmed and paralyzed when it’s not treated, which affects her productivity. She also experiences the “time blindness” characteristic of ADHD due to her reduced ability to prioritize tasks and avoid distraction, and periods of hyperfocus.
She said without her meds she will “disappoint” people, especially at work. “Something’s going to have to be done and I’m going to miss it, and it’s going to cost someone reputation, time or money,” she said. She also sees an impact in personal relationships, as she’s more likely to fight with her husband and interrupt people in meetings.
Band said the perpetual distraction experienced by people with ADHD makes it hard to get things done. “It’s like every single thing that moves or makes a noise gets their attention and they can’t direct it to one thing.”
Medication “gives them some control over where their attention is and what they’re focusing on,” he added.
Jill Linkoff, a certified ADHD coach who lives in Pikesville and was diagnosed with the disorder in her 40s, said there is still some stigma around ADHD, and particularly the use of stimulant medications, which is fueled by skepticism in the media about whether they’re necessary or should be eschewed in favor of other treatments. This persists, she said, despite a large body of research showing stimulant medications are safe and can be highly effective.
Linkoff said the rampant “misconception and miseducation on how this effects people” has led to a lack of coverage by the media and lack of political urgency to rectify the current shortage of medications that can be “life-changing” for people that need them, she said.
Silver agrees. “I think the danger in all this is, there’s just a lot of people who don’t think this is a problem,” he said.