As the School Year Begins, Families Struggle to Find A.D.H.D. Medication

In the spring, Riana Shaw Robinson learned that her 11-year-old son, Madison, had sprinted out of class to chase a squirrel through his school’s courtyard in Berkeley, Calif.

It’s not how her sixth grader would typically behave. But that day Madison hadn’t taken his Adderall — the medication that, in his words, helps his brain slow down, “from 100 miles per hour — like a car — to 70 miles per hour.”

Ms. Robinson said Adderall worked better for her son than the other medications they had used to treat his attention deficit hyperactivity disorder. With Adderall, he was calmer and better able to focus.

“He actually had a taste for what relief could look like,” Ms. Robinson said.

But for nearly a year now the medication — Madison takes the generic version — has been difficult to find. He has had to skip doses, sometimes for up to two weeks, because nearby pharmacies have been out of stock.

The family is rationing his pills this summer so that Madison, who recently turned 12, will have them during the school year.

“We try to manage with a couple of caffeine drinks during the day and soccer in the afternoons,” Ms. Robinson said, strategies that she said have helped her son regulate his emotions.

In July, the Food and Drug Administration posted more shortages in A.D.H.D medications, adding generic versions of Concerta and two types of Vyvanse capsules to the list. And in August, the F.D.A. and the Drug Enforcement Administration took the rare step of issuing a joint public letter acknowledging the shortage and asking manufacturers to increase production.

A representative from Takeda Pharmaceuticals, which makes Vyvanse, said in an email that a “manufacturing delay, which we are actively working to resolve,” had created a temporary disruption in the supply of certain Vyvanse capsules, adding that “we expect this to continue into September 2023.”

Parents and caregivers across the country are spending hours each month hunting down pharmacies with A.D.H.D. medication in stock and asking their doctors to either transfer or rewrite prescriptions, a process many equate to having a second job. Others pay hundreds of dollars out of pocket for name-brand drugs that are sometimes more readily available but, unlike generics, are not covered by their insurance. Some children end up taking similar but less effective medications or go without medication for months at a time because their families do not have the extra time or cash.

A.D.H.D., which is often characterized by inattention, disorganization, hyperactivity and impulsivity, is one of the most common childhood neurodevelopmental disorders. Because of the medication shortage, children across the country with the condition fell behind in their schoolwork over the spring, and their relationships often suffered as they struggled to regulate their emotions, according to interviews with multiple doctors and parents. Meanwhile, they all wonder: Why is this happening, and when will it end?

‘She couldn’t catch up’

One of the cruelest aspects of the A.D.H.D. medication shortage, some parents have said, has been the collateral damage to their children’s self-esteem.

Kari Debbink, who lives in Bowie, Md., said her daughter, who is about to enter her senior year of high school, would lose motivation to do her school work when her A.D.H.D. medication, Concerta, was not available in either the brand name or the generic version. Her grades, which had typically been B’s, plummeted — and so did her confidence.

“Once she got behind, she couldn’t catch up,” Ms. Debbink said. “By the end of the year, we were just trying to prevent her from failing classes.”

Drew Tolliver, 12, who lives in DeKalb, Ill., typically takes the generic version of Concerta, but since February, his family has had difficulty finding it.

When taking the medication regularly, Drew said, “I felt like I knew myself.”

“I felt like a better me,” he added, “like how ‘myself’ should be.”

His mother Amy Tolliver recently located the medicine — but she had to pick it up 40 minutes away from the gas company where she works 10-hour shifts, six days a week.

In the spring, Drew would refuse to go to class when he didn’t have his medication, said Michelle Tolliver, Amy’s wife and Drew’s second parent. She and Amy sometimes relented and allowed him to stay home.

“I hated to see him feel like he failed,” Michelle Tolliver said.

‘I was on hold for 50 minutes’

Because A.D.H.D. medications are considered controlled substances, patients are required to get a new prescription for each 30-day supply.

“I was on hold for 50 minutes waiting to talk to a pharmacist,” Dr. David Grunwald, a child and adolescent psychiatrist in Berkeley, Calif., said of a recent call to track down A.D.H.D. medication for a child whose mother has a chronic illness and cannot spend hours on the phone.

In his practice, he said, long hold times with large pharmacy chains are becoming the norm.

“It feels like a game where you don’t know which stimulant is going to be in short supply each week or month,” he said. “It’s very frustrating.”

Dr. Kali Cyrus, a psychiatrist with a private practice in Washington, D.C., has had to call pharmacies so often that she is planning to hire someone to help her check availability. Right now she tries to squeeze in calls throughout the day, including in the morning, when she is making breakfast or walking her dog.

In her sessions with patients, she said, she sometimes has to decide “how to combine different strengths or formulations to get my patient their normal dose — or as close as we can,” or switch to another stimulant that is more available.

Changing medications can result in a less effective treatment, doctors say, because certain stimulants work better for some people than others. Even switching from name-brand drugs to generic versions can be problematic. Generic versions of Concerta, for example, may not release their drugs over time in the same way as the original.

Because of the shortage, Paige and Leo, who live in Northern California, are now giving their 7-year-old son, Andy, the drug Metadate, which they say lasts only six hours. (The family asked to be referred to by their middle names to protect their privacy.)

This means that Andy then requires an additional dose in the afternoon, administered during his after-school program. Sometimes the staff would forget, Paige said.

When that happened, “we would get a call like, ‘Your kid’s out of control,’” Leo said.

Demand for stimulants has soared

For children with A.D.H.D. who have trouble functioning in daily life, stimulant medications like amphetamines (Adderall) and methylphenidate (including Ritalin and Concerta), have long been considered the gold standard of treatment by psychiatrists and pediatricians.

“They are one of our most effective treatments in psychiatry — period,” said Dr. Alecia Vogel-Hammen, an assistant professor of psychiatry at the Washington University School of Medicine. “They have been life-changing.”

In recent years, these drugs have been in high demand. The use of prescription stimulants to treat A.D.H.D. doubled from 2006 to 2016. And between the pandemic years 2020 and 2021, the percentage of people who had a prescription filled for a stimulant rose by more than 10 percent among some adults and teens, according to an analysis from the Centers for Disease Control and Prevention.

The growing numbers — and the ease of being evaluated via telehealth — have raised concerns that some people are being misdiagnosed and that stimulants for A.D.H.D. are being overprescribed, or abused by people who do not have A.D.H.D. but who use the drug to be more productive in school or at work. But this is not the case across the board. Studies have found that girls, people of color and those who identify as L.G.B.T.Q. are often underdiagnosed and undertreated for A.D.H.D.

Doctors say demand for A.D.H.D. medications has also risen because of increasing awareness about the condition in both children and adults.

Why is the shortage happening?

The disruption in A.D.H.D. medications mirrors the shortage of hundreds of other types of drugs, including generic forms of chemotherapy, that have fallen victim to a faltering pharmaceutical supply chain.

Typically, drug shortages are tied to a single manufacturing facility, said Michael Ganio, an expert in drug shortages at the American Society of Health-System Pharmacists.

But in this case, according to the F.D.A.’s online drug database, the A.D.H.D. medication shortage now involves several manufacturers — mostly those who make generic drugs — and has been ongoing since the fall of last year. On the F.D.A.’s website, the reasons offered by each manufacturer are sometimes as opaque as “regulatory delay” or “other.” Others say “shortage of active ingredient” or “increased demand.”

Some manufacturers have given specific time frames for when the issues might be resolved, such as “mid-August.” But it is unclear when that will translate to restocked pharmacy shelves.

Because controlled substances have a high potential for abuse, the D.E.A. sets limits on how many of these drugs can be produced. But in 2022, the manufacturers of amphetamine medications produced about 1 billion fewer doses than they were permitted to make, according to government records. They did not fully meet their quotas in 2020 or 2021 either.

When asked for more specifics about which companies were not meeting the quotas or whether any companies had asked to increase their quotas, a D.E.A. official responded that details about each company’s quotas are considered confidential.

“The fact that there’s no information is just that much more frustrating,” Dr. Ganio said.

Emails to the drug manufacturers currently described as having a shortage of A.D.H.D. medications provided little clarity as to when the problems might be resolved. A representative from Teva Pharmaceuticals, which manufactures Adderall, said it was continuing to see “unprecedented demand” that may cause “intermittent delays” but that it planned to produce the full amount of doses it was permitted to make. Granules Pharmaceuticals, which makes the generic equivalent of Adderall XR and Adderall IR, said it had requested to raise its D.E.A. quota.

Another factor potentially driving the shortage: a $21 billion settlement brokered between three pharmaceutical distributors and most states that placed new requirements on pharmaceutical companies to help stem the flow of controlled substances like prescription painkillers. It has resulted in tens of thousands of drug orders being canceled, including those for A.D.H.D. drugs.

“There is a higher level of scrutiny on all controlled-substance ordering by pharmacies,” said Ilisa Bernstein, a senior vice president at the American Pharmacists Association. “It’s created a perfect storm.”

Suzana, who lives in Tennessee and asked to be referred to by her first name to protect her family’s privacy, described the shortage as a “nightmare.”

This year, she said, her 16-year-old son’s extended release generic Focalin became difficult to find. And because they couldn’t get it consistently, his fourth quarter played out like a “roller coaster.”

“One week he will have a 100 in the class and next week multiple zeros,” she said.

Over the summer, Suzana said, he was on and off his medication so they could save his pills for the school year, which began Monday. That meant she would have extra time to find a refill for his medication.

“This morning I actually counted pills to see how many he had left,” she said.

Now that her son has his driver’s license, she plans to limit his driving, but she worries: “If he doesn’t take a dose and he drives — will he be OK?”