On Thursday, the CDC released new data showing that almost 15.5 million U.S. adults are living with ADHD. More than half of those individuals received their diagnosis in adulthood.
That includes me. The diagnosis came as a relief and validation — a way to understand years of impulsivity, inattention, and struggles with daily life. I was diagnosed at age 36, after first one, then two, and ultimately, four of my five children were also diagnosed with ADHD.
But with that validation came challenges. I could not have predicted that managing ADHD as an adult, especially when your kids are also diagnosed, would, in some ways, be just as wild as my undiagnosed life. Now, the control I have gained is under threat — first from drug shortages, and now from Congress.
Psychologist Russell Barkley calls ADHD the “most treatable chronic health disorder in the world.” He notes that stimulant medications are unmatched in the mental health field, with between 80-90% of individuals experiencing significant ADHD symptom relief when effectively treated. These medications may have side effects for some individuals, as Barkley notes in “The Impact of ADHD in Adults,” but they are manageable and often far better tolerated than the majority of psychiatric medicines.
The medication I was prescribed worked incredibly well. My life was stable and well-managed. That is, until 2023 when roadblocks suddenly appeared in the form of DEA production limits and pharmacy stock issues. My ability to access what I consider to be lifesaving medication — for myself and my children — came to a screeching halt, and my entire family felt the impact.
For the past 18 months, stimulant shortages have become a constant source of frustration. According to the newly released CDC data, 71.5% of adults taking stimulant medications reported difficulty filling their prescriptions in the past year.
For many weeks, navigating this shortage became a full-time job. I spent hours driving across my family’s major metropolitan city, I called multiple pharmacies, I know the interactive menu prompts for all major pharmacy chains by heart, and I spent even more hours listening to questionable on-hold music. It was worth it.
Not taking my ADHD medication is not just a minor inconvenience, just as untreated ADHD isn’t just a little brain fog. It’s risky. I recognize that I say this from a position of privilege. As the current president of the Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) Board of Directors and as a licensed mental health clinician and ADHD coach, I’m fortunate to have in-depth knowledge of how this system functions. Yet even with this level of expertise, I spent days trying to fill prescriptions. For individuals not used to running into roadblock after roadblock, it would be almost impossible.
Before I was diagnosed and started on medication, my life was chaotic: speeding tickets, impulsive shopping sprees, forgotten bills, and strained relationships. With my diagnosis, treatment, and the proper medication, my world changed. Keep in mind, that’s just me. There are four other people in my family in the same boat. My children all have ADHD and something else. ADHD and autism spectrum disorder, ADHD and bipolar disorder, ADHD and dysgraphia, ADHD and anxiety … the list goes on. They need their medication to focus in school, to have the presence of mind to say no in risky adolescent situations, and to be safe behind the wheel as they become new drivers.
That’s just the tip of the iceberg. People with untreated ADHD face increased rates of divorce, are highly likely to experience intimate partner violence, and often become justice-involved. They are also twice as likely to be unemployed compared to their peers without ADHD. Perhaps most significantly, Barkley found that untreated adults with ADHD are likely to die 13 years earlier than their peers without ADHD.
In 2023, there was a three-week period when we couldn’t get my 16-year-old son’s prescription filled due to the shortage. During that time, he got into his first car accident (thankfully, everyone was OK), got his first speeding ticket, and failed to turn in 13 homework assignments. ADHD medication works.
The Covid-19 pandemic, while challenging in many ways, brought with it a massive advantage for individuals with ADHD: telehealth. The new CDC data shows that 46% of adults with ADHD have used this telehealth lifeline to manage their condition. Telehealth hasn’t just made life easier; it’s made treatment more accessible.
The Food and Drug Administration recommends, but does not require, medical practitioners to see their patients on stimulant medication every 90 days to have their prescriptions refilled.
Because I’ve been stable on my ADHD medication for several years, I see my psychiatrist every six months. My kids’ pediatrician requires the younger ones to check in every three months unless we need to make a change. When that happens, we need to see the doctor every 30 days until my child is stabilized on the new medication or dosage. If we go in person, it’s an average loss of four hours to my workday and my child’s school day. With telehealth, my kids can hop on a quick video call with their prescriber between classes, which beats missing half a school day for an appointment. And with five of us on stimulant medications, time is a precious resource.
Unfortunately, this lifeline is in jeopardy. Current telehealth regulations are set to expire on Dec. 31, unless the DEA extends them or Congress intercedes to pressure the DEA to extend. Without telehealth, people in rural and underserved communities may lose access to ADHD specialists entirely, forcing them to go without treatment or travel long distances. This would exacerbate existing health disparities, particularly for marginalized communities.
Many of my relatives faced challenges with substance abuse before they were diagnosed with ADHD, and it makes me wonder: What if we’d known sooner? Timothy Wilens has found that 50% of adults with untreated ADHD will develop a substance use disorder at some point in their lives. Access to consistent care is critical.
Telehealth has transformed the way we manage ADHD, but the fight for access isn’t over. Almost 15.5 million U.S. adults are currently diagnosed with ADHD and 46% of them have benefited from telehealth for their treatment. Clearly, the risks of losing access to these services are significant. If the current telehealth regulations are allowed to expire without a long-term federal government solution, millions of people could face severe disruptions in their care.
Ensuring that telehealth services remain a permanent part of the ADHD treatment landscape is essential. For families like mine, it’s the difference between chaos and calm, between managing symptoms and letting them spiral. As we continue to gather data on adult ADHD, one thing is clear: we need to keep advocating for better access to care — whether through telehealth, addressing medication shortages, or developing long-term solutions for treatment. ADHD isn’t just a neurodevelopmental disorder — it’s a public health issue.
Jeremy Didier is president of the CHADD Board of Directors.
Disclosure: CHADD receives some funding from corporate donations, including pharmaceutical companies that may produce ADHD medications. CHADD limits contributions from pharmaceutical companies to no more than 30% of total revenue each year.