In a much-needed update to 2003 data on attention-deficit/hyperactivity disorder (ADHD), a new report from the National Center for Health Statistics (NCHS) has found that an estimated 15.5 million US adults are living with the condition – and many are being let down by poor access to treatment.
In the US Centers for Disease Control and Prevention-led NCHS report, featuring data collected from 7,046 Americans throughout October and November last year, nearly 56% of respondents had been diagnosed with ADHD as adults.
The increase in adult diagnosis is multifaceted – from increased telehealth and clinical access to seeking a diagnosis, to a growing awareness that ADHD symptoms had been missed or masked, or misdiagnosed, in childhood.
"Since the start of the COVID-19 pandemic (i.e., March 2020), approximately one third of adults with current ADHD used telehealth to obtain a prescription for ADHD medication (30.5%) or to receive counseling or therapy for ADHD (30.8%)," the survey's authors noted in the report.
However, the survey also reveals how the current system is failing most who manage to get a diagnosis. It's estimated that only a third of the 15.5 million people – around 6% of the US adult population – have obtained a prescription for medication to treat their ADHD. What's more, of that third, the study estimates that three quarters had endured difficulties in accessing the medication due to ongoing supply issues.
In September 2024, the US Drug Enforcement Agency (DEA) announced it would permit the ramping up of the production of slow-release lisdexamfetamine dimestylate – best known by its brand name Vyvanse – by 24%, on the back of significant domestic and global shortages throughout 2023 and early 2024.
This comes after more than a dozen pharmaceutical companies were granted permission by the US Food and Drug Administration (FDA) in August last year to make generic capsules and chewable lisdexamfetamine dimestylate. This didn't alleviate the demand for medication as it was expected to.
Now, around a quarter of the additional 24% that the DEA permitted to be produced, a quarter will be for the US market, while the rest will be shipped overseas to the large international market that has also suffered from extended shortages.
There have also been issues with the availability of other common stimulant medications Adderall and Ritalin. But no two stimulants (or brain response to them) are alike, so it's not a simple case of switching between what's available. In many jurisdictions, this also involves more medical appointments and red tape, without guarantees that a switch will be beneficial or also not face shortages.
"Stimulants are controlled substances with a high potential for abuse, which can lead to addiction and overdose," noted the FDA and DEA in a joint statement in August 2023. "Therefore, there are limits (also known as quotas) set by DEA for how much of these drugs can be produced. However, for amphetamine medications, in 2022, manufacturers did not produce the full amount that these limits permitted them to make.
"Based on DEA's internal analysis of inventory, manufacturing, and sales data submitted by manufacturers of amphetamine products, manufacturers only sold approximately 70% of their allotted quota for the year, and there were approximately one billion more doses that they could have produced but did not make or ship. Data for 2023 so far show a similar trend," the statement continued.
With officials citing ingredient scarcity, strict quotas and production limitations, it seems that medication shortages are set to continue – which is of course bad news for the increasing number of adults receiving ADHD diagnoses. And it doesn't help those who are forced to experience treatment breaks either, which can have a huge impact on mental health and wellbeing.
"It can be really detrimental to the patient," said Kelsey Schwander, a clinical assistant professor at the University of Colorado, earlier this year. "It can cause mood disruption, rebound symptoms, and even withdrawal effects. Clearly the patients are using it for a specific purpose, and so it’s not ideal just to abruptly stop the medication.
"Lately, we’ve been switching patients to different medications," she added. "But the problem is that there are shortages across all of the stimulants. It’s almost like a guessing game of, 'OK, what will be in stock?' And the problem with switching medications is if a patient is stable on a particular medication, all of the sudden we have to change to a different drug. Pharmacists are equipped to offer the most suitable recommendations for medication switches; however, it is not possible to predict how a patient may respond to a new medication."
Worldwide, it's estimated that 2-5% of adults have the kind of chronic symptoms – inattention, impulsivity, poor emotional regulation and hyperactivity – that could have them diagnosed with ADHD. However, up-to-date data on just how many adults have been diagnosed recently in the US and around the world is severely lacking. US estimates have previously relied on statistics from 2003.
The study was published in the CDC's Morbidity and Mortality Weekly Report (MMWR).