Erika Kerkhoff was diagnosed with narcolepsy when she was 26. The condition is characterized by extreme sleepiness that can come on at any time, causing her to fall asleep and not be awakened easily. “I fall asleep in whatever position I'm in, sometimes for hours,” says Kerkhoff, an administrator at the University of Florida in Gainesville. “Furniture could fall on me and I wouldn't wake up.” She also experiences cataplexy (temporary semiparalysis while awake) but hasn't had an episode since she started taking Xywav, a medication that combines calcium, magnesium, potassium, and sodium oxybates.
To counter excessive daytime sleepiness, Kerkhoff, who is 44, also takes dexmethylphenidate (Focalin), a stimulant used to treat attention deficit hyperactivity disorder (ADHD). Without dexmethylphenidate, she feels so lethargic she can't stay awake. For the past two years, Kerkhoff has had trouble getting her prescriptions filled due to drug shortages. When that happens, she stays home. It's too dangerous to drive.
The current shortage of stimulant medication like dexmethylphenidate—also used to treat narcolepsy and brain cancer symptoms—began in September 2022 with immediate-release amphetamine and dextroamphetamine (Adderall). Soon, extended-release Adderall was in short supply too, followed by rolling shortages of other ADHD medications. Now nearly all stimulant medications are subject to shortages.
Several factors have contributed to the shortage of these drugs, including underproduction, their classification as controlled substances by the Drug Enforcement Agency, and an increase in diagnoses and prescriptions during the COVID-19 pandemic. Then in January 2024, many insurance companies stopped covering brand-name drugs and now cover only generic ones, even though some pharmacies have a short supply of generics and a surplus of brand-name medications.
Because controlled substances are more likely to be abused than other drugs, manufacturers must get approval for the quantity they produce, and increasing that cap when demand spikes can take time. Pharmacists, who are required to report people who exhibit “drug-seeking behavior,” may be suspicious of patients who call to ask if these drugs are in stock. Also, the drugs can be prescribed for only 60 days rather than 90, and patients can't refill their prescriptions until just a few days before they run out.
Some neurologists believe these restrictions are inappropriate for people with ADHD. “Research has shown that people on these prescription medications for ADHD are not likely to abuse them,” says Max Wiznitzer, MD, FAAN, professor of pediatric neurology at Case Western Reserve University School of Medicine in Cleveland.
“My patients with ADHD say these medications are life-changing,” says Sarah Cheyette, MD, a pediatric neurologist at the Palo Alto Medical Foundation in the Bay Area in California. Now many patients have to call several pharmacies and work with their doctors to switch drugs. When Kerkhoff is close to running out, she'll stop taking the stimulant over the weekend so she'll have enough medication to help her function at work.
Even temporary shortages can have negative effects. “One adult patient of mine got into a driving accident,” says Dr. Cheyette. “Others have been put on performance improvement programs at work.”
When Dion Schwab, 14, was diagnosed with ADHD in 2023, the first stimulant she tried wasn't effective. Then her doctor prescribed dexmethylphenidate, which did work. But she hasn't been able to get it for several months and is now struggling in high school. “I look forward to not stressing about ADHD,” says Schwab, who lives in San Francisco. “But some things are beyond my power to fix.”
Physicians often prescribe stimulant medications for unapproved or off-label purposes, and shortages are affecting these patients as well. To treat fatigue in her patients with multiple sclerosis, Barbara Giesser, MD, FAAN, a neurologist at the Pacific Brain Health Center in Santa Monica, CA, sometimes prescribes amphetamine and dextroamphetamine. But some patients could no longer get the drug, “so we had to switch them to another anti-fatigue medication.”
For people with brain cancer, the combination of amphetamine and dextroamphetamine and methylphenidate (Concerta) are used to treat side effects of chemotherapy such as fatigue, lack of focus, and brain fog, says Mallika Patel, PharmD, a clinical pharmacist specializing in neuro-oncology at the Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in Durham, NC. “Their use for this purpose is supported by medical literature,” she says.
Morgan Collinson, 40, who is on disability and lives in Asheboro, NC, was diagnosed with an oligodendroglioma, a brain tumor, in 2011. The following year she had surgery, which removed about half the tumor, followed by chemotherapy. Ten years later, the tumor started growing again, so she had more chemotherapy and radiation and began taking antiseizure medications. Her fatigue worsened, and at the end of 2022, her doctor prescribed methylphenidate. Now it's tough to get. Her pharmacy had a generic version but not the brand (Concerta) her neuro-oncologist prescribed, and insurance wouldn't cover it. With help from a pharmacy tech at Duke, she was able to get insurance to cover it. So far, she's been able to stay on it, but she worries. “Without it, I would be exhausted and have mood swings a lot more.”
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