The collateral damage of A.D.H.D. shortage of medicines (2023)

In the spring, Riana Shaw Robinson learned that her 11-year-old son, Madison, had run away from class to chase a squirrel in her schoolyard in Berkeley, California.

This is not the way your sixth grader would normally behave. But that day, Madison didn't take her Adderall — a drug she says helps her brain slow down, "from 100 miles an hour — like a car — to 70 miles an hour."

Ms. Robinson said Adderall worked better for her son than other drugs they used to treat his ADHD. With Adderall, he was calmer and could concentrate better.

"Actually, he felt what a relief it might be," Robinson said.

But foralmost a year alreadythe drug - Madison takes a generic version - was hard to come by. He had to skip doses, sometimes for up to two weeks, because nearby pharmacies were out of stock.

The family is limiting their pills this summer so Madison, who recently turned 12, can take them during the school year.

"We're trying to deal with a few caffeinated drinks during the day and football in the afternoon," Robinson said, strategies she said have helped her son regulate his emotions.

In July, the Food and Drug Administration reported more shortages of ADHD drugs, addinggeneric versions of Concertoand two typesThe habit of friendshipcapsules on the list. And in August, the F.D.A. and the Drug Enforcement Administration took the rare step of issuing a joint statementpublic letteracknowledging shortages and asking producers to increase production.

Parents and caregivers across the country spend hours every month searching for A.D.H.D. pharmacies. stockpiling medications and asking doctors to transfer or rewrite prescriptions, a process that many equate with another job. Others pay hundreds of dollars out of pocket for brand-name drugs that are sometimes more readily available but, unlike generic drugs, are not covered by insurance. Some children end up on similar but less effective drugs or go without medication for months because their families don't have time or money left.

A.D.H.D., which is often characterized by inattention, disorganization, hyperactivity and impulsivity, is one ofmore commonneurodevelopmental disorders in childhood. Because of drug shortages, children across the country with the disease fell behind in school during the spring, and their relationships often suffered as they struggled to regulate their emotions, according to interviews with several doctors and parents. Meanwhile, everyone is wondering: why is this happening and when will it end?

'She couldn't keep up'

One of the cruelest aspects of A.D.H.D. The lack of medication, some parents said, is collateral damage to their children's self-esteem.

Kari Debbink, who lives in Bowie, Maryland, she said her daughter, who will soon be in her senior year of high school, will lose motivation to do schoolwork when her ADHD flares up. the drug, Concerta, was not available in either a branded or generic version. His grades, which were normally B's, plummeted - and so did his confidence.

"Once she fell behind, she couldn't catch up," Debbink said. "For the rest of the year, we were just trying to keep her from failing classes."

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

Taking the medication regularly, Drew said, "I felt like I knew myself."

"I felt better," he added, "as 'myself' should."

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

In the spring, Drew refused to go to class when he wasn't taking his medication, said Michelle Tolliver, Amy's wife and Drew's second mother. She and Amy sometimes relented and let him stay home.

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

'I've been waiting for 50 minutes'

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

"I was on hold for 50 minutes waiting to talk to a pharmacist," said Dr. David Grunwald, a child and adolescent psychiatrist in Berkeley, Calif., about a recent call for an ADHD screening. medicine for a child whose mother is chronically ill and cannot spend hours on the phone.

In his practice, he said, long waits in large chain pharmacies are becoming the norm.

"It feels like a game where you don't know what stimulus you're going to be missing each week or month," he said. "It's very frustrating."

dr. Kali Cyrus, a psychiatrist in private practice in Washington, DC, has had to call pharmacies so often that she plans to hire someone to help her check availability. At the moment, he tries to take calls during the day, including in the morning when he is making breakfast or walking the dog.

In her sessions with patients, she said, she sometimes has to decide "how to combine different doses or formulations to give my patient a normal dose — or as close as possible," or switch to another stimulant that's more readily available.

Changing medications can result in less effective treatment, doctors say, because certain stimulants work better for some people than others. Even switching from brand-name 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, now give their 7-year-old son Andy the drug Metadate, which they say only works for six hours. (The family asked that they be referred to by their middle names to protect their privacy.)

This means that Andy needs an extra dose in the afternoon during the after-school program. Sometimes the team forgot, Paige said.

When that happened, "we'd get a call like, 'Your child is out of control,'" Leo said.

Demand for stimulants has skyrocketed

For children with A.D.H.D. For those who have trouble functioning in daily life, stimulants such as amphetamines (Adderall) and methylphenidate (including Ritalin and Concerta) have long been considered the gold standard of care 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 University of Washington School of Medicine. "They changed lives."

In recent years, these drugs have been in great demand. Using prescription stimulants to treat ADHD.Happy 2006 and 2016. Between the 2020 and 2021 pandemics, the percentage of people who received a prescription for a stimulant increased bymore than 10 percentamong some adults and teenagers, according to an analysis by the Centers for Disease Control and Prevention.

The growing numbers – and the ease of screening via telehealth – have raised concerns that some people aremisdiagnosedand which stimulants for A.D.H.D. prescribed or abused by people who do not have ADHD. but who use drugs to be more productive at school or work. But this is not the case entirely. Studies have found thatgirls,colored peopleethose who identify as L.G.B.T.Q.ADHD is often underdiagnosed and undertreated.

Doctors say the demand for A.D.H.D. medications have also increased due to increased awareness of the condition in children and adults alike.

Why is there a shortage?

Interruption in A.D.H.D. drugs reflects the shortagehundreds of other types of drugs, including generic forms of chemotherapy, which have fallen prey to a failing pharmaceutical supply chain.

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

But in this case, according to the FDA's online drug database, A.D.H.D. the drug shortage now involves multiple manufacturers - especially those that make generic drugs - and has been going on since the fall of last year. On the FDA's website, the reasons given by each manufacturer are sometimes as opaque as "regulatory delay" or "other." Others say "shortage of active ingredients" or "increased demand".

Some manufacturers have providedspecific deadlineswhen the issues can be resolved, such as "mid-August". But it is not clear when this will be transferred to the 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, amphetamine manufacturers produced about one billion doses less than allowed, according togovernment records. Theythey did not fully fulfill their quotasand in 2020 or 2021.

When asked for more details about which companies are not meeting quotas or whether any companies have asked to increase their quotas, the D.E.A. The official replied that details of each company's quotas are considered confidential.

"The fact that there is no information is very frustrating," said Dr. Moved.

An email to drugmakers currently describes a lack of A.D.H.D. medications provide little clarity about when problems can be resolved. A representative for Teva Pharmaceuticals, which makes Adderall, said it continues to see "unprecedented demand" that could cause "occasional delays" but plans to produce the full amount of approved doses. Granules Pharmaceuticals, which makes the generic equivalent of Adderall XR and Adderall IR, said it has applied to increase its D.E.A. quota.

Another factor that can lead to shortages: aA settlement worth 21 billion dollarsmediates between three pharmaceutical distributors and most states that have imposed new requirements on drug companies to help stem the flow of controlled substances, such as prescription painkillers. This resulted in the cancellation of tens of thousands of drug orders, including those for A.D.H.D. drugs.

"There is a greater level of oversight of all pharmacy claims for controlled substances," said Ilisa Bernstein, senior vice president of the American Pharmacists Association. "Created a perfect storm."

This year, she said, it has become difficult to get generic Focalin extended release for her 16-year-old son. And because they didn't consistently succeed, their fourth quarter was like a "roller coaster".

"One week he'll have a 100 in class and the next week he'll have a bunch of zeroes," she said.

During the summer, says Suzana, he switched the medication on and off so that they could prepare the pills for the school year that started on Monday. This meant she had more time to find a supplement for his medication.

"I actually counted the pills this morning to see how many he had left," she said.

Now that her son has a driver's license, she plans to limit his driving, but she worries, "If he doesn't take the dose and doesn't drive — is he going to be OK?"