Raising five children — four of whom have ADHD — while dealing with the neurodevelopmental disorder herself, Jeremy Didier is acutely aware of how chaotic things can become without proper medication.
Didier's high school son sometimes does not take his medication. Her son's school sends regular updates on completed work, and on weeks when he can't or doesn't take the prescribed ADHD medication, missed assignments balloon into the double digits.
"That doesn't feel good," said Didier, who founded ADHD KC, a chapter of Children and Adults with Attention-Deficit/Hyperactivity Disorder, or CHADD. "That doesn't feel good for him. It doesn't feel good for us to be like, what in the heck is going on? (Medication) makes a massive difference."
People across the country diagnosed with ADHD have been facing this same dilemma for the past six months. In October, the FDA announced a shortage of Amphetamine mixed slats, commonly known by the brand name Adderall — a stimulant medication used to treat ADHD.
Medication is the first-line treatment method for those in the U.S. with ADHD. Adderall, a combination of amphetamine and dextroamphetamine, targets the central nervous system to improve focus and reduce impulsivity by increasing dopamine and norepinephrine levels in the brain.
"It's not immediately a life-or-death situation for an individual with ADHD to not get their medicine, but potentially it can be," Didier said. "When you take away the thing that helps them be successful and helps them function on a day-to-day basis, it can quickly lead to serious, potentially life-or-death issues."
Adderall requires a prescription and is a controlled substance, so supply is strictly monitored and distribution is limited.
But the shortage has also expanded to alternative medications as people try to find ways around the low supply of Adderall, putting strain on the stock of the other medicines.
Currently, about 4.4% of adults present with ADHD. The estimated percentage who have ever been diagnosed is nearly double that. The number of school-aged children ever diagnosed is about six million, or 9.8%.
According to the Centers for Disease Control and Prevention, 10.7% of kids in Kansas and 10.9% in Missouri have an ADHD diagnosis. About 63% of those kids use medication to treat their ADHD.
A 2019 study found a 43% increase in the rate of adults being newly diagnosed with ADHD from 2007 to 2016. In addition, the prescribed stimulants rate jumped during the pandemic.
The FDA previously said that Adderall is no longer in shortage, but pharmacists in Kansas City are still unsure when they will have adequate stock. Although the FDA initially reported the deficit was due to a manufacturer issue, they now say it is demand driven.
University Health pharmacist Patrick Kelly said right now, manufacturers are either providing no supply date for Adderall or are estimating late April. Just a few weeks ago, some manufacturers suggested the supply date could be early April.
Kelly said it's crucial to establish a good line of communication with your local pharmacist and consider using alternative medications to Adderall if you can find one that works.
"What people are able to get from the manufacturer and from pharmacies is kind of hit or miss right now," he said. "But the pharmacist that the person uses should be able to tell them what's available and help collaborate with their provider to make sure that they can continue to have a supply of a medication to treat their symptoms."
Unfortunately, that isn't always the most feasible solution, said Tonya Miles, a licensed psychologist who works with many people with ADHD. Miles and her children have ADHD as well.
Miles said switching a prescription can be a headache — and alternatives may not even work.
"That involves contacting their physician, asking their physician, you know, usually through either a portal or the nurse, to write a different script," Miles said. "Then that might involve sending it to a few different places wherever the medication might be in stock."
It can be an overwhelming process, and Miles notes that a high percentage of people with ADHD who also have depression or anxiety. She said that makes it even more challenging.
In some cases, it leads people to discontinue medication altogether.
Sometimes they can hop back on, but Miles knows many people who struggle to get back on track, spending months off whatever they may be taking.
Still, beyond keeping and open line of communication with pharmacists and providers and considering an alternative medication, there are few options available. Miles likened the experience to someone with bad eyesight not having glasses they need for daily activities.
Just like when someone takes the glasses off, they have their old eyesight, when someone stops their ADHD medication, their brain returns to the same functions.
"Even with medication, it's still really difficult for me to complete a task. Without medication that's even worse," Miles said. "It really does kind of feel like being in a fog and like you're half asleep."
