In other words, it’s critical for college students and others who recently moved out on their own to develop reliable medication management routines without parental scaffolding — and to advocate for their own health care needs at the doctor’s office.

[Free Resource: 2024 Scorecard of ADHD Treatments]

Here is the advice I give to my young adult patients:

• Incorporate medication administration into your daily routine. Use alarms or reminders on your phone, or associate medication with specific daily activities (e.g., breakfast or brushing teeth). Use a pill organizer to keep track of doses.
• Understand the expected effects and potential side effects of ADHD medication, and the likelihood that ADHD symptoms will return if doses are skipped. Also know that ADHD medication reduces the risk of substance use and improves productivity at work and in school.
• With your provider, brainstorm ways to adjust your routine to better support medication maintenance. Discuss different medication options, such as long-acting versus short-acting formulations.
• Regularly monitor medication effectiveness and side effects. Keep track of changes in symptoms or adverse reactions. Talk to your doctor about these and any other challenges with your medication regimen, concerns about mixing your ADHD medication with other medications or substances, difficulties adhering to the prescribed schedule, or struggles with getting timely refills from your pharmacy.
• If you experience significant side effects, worsening symptoms, or recognize a change or deterioration in your work performance, relationships, sleep, exercise routines, task management, or overall executive functioning skills, it’s important to tell your health care provider.

ADHD Medication Management: Next Steps

• Download: Get Control of Your Life and Schedule
• Q&A: ADHD Medication — Side Effects, Dosages, Precautions & More
• Read: How to Treat a Teen Self-Medicating ADHD

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Despite highly esteemed and plentiful literature on the use of stimulant and nonstimulant medication to treat ADHD, relatively little information is available on the treatment of complex ADHD — that is, attention deficit disorder plus at least one comorbid condition like anxiety, depression, or an eating disorder. Few studies address the treatment of comorbid conditions, the order of treatment, or the treatment of cognitive deficits and/or hard-to-treat ADHD symptoms.

This presentation will integrate data from controlled and open trials to highlight strategies for illustrative cases of complex ADHD. Participants will learn:

• About new medications approved for ADHD and their use for complex and hard-to-treat ADHD
• About strategies to manage ADHD comorbidities
• About approaches for treating cognitive executive function deficits in ADHD

Have a question for our expert? There will be an opportunity to post questions for the presenter during the live webinar.

Meet the Expert Speaker

Timothy E. Wilens, M.D., is the Chief of Child and Adolescent Psychiatry, and (Co) Director of the Center for Addiction Medicine at the Massachusetts General Hospital. He is a Professor of Psychiatry at Harvard Medical School. Dr. Wilens specializes in the diagnosis and treatment of ADHD, substance use disorders, and bipolar disorder. Widely published, Dr. Wilens has more than 350 original articles, reviews, chapters, books and editorials to his credit. Dr. Wilens is a consultant to the National Football League, Major/Minor League Baseball, Bay Cove Human Services and Phoenix/Gavin House and is consistently named one of the Best Doctors in Boston and in America for psychiatry.

Treating Complex ADHD: More Resources

• Download: 2024 Scorecard of ADHD Treatments
• Sign Up: The Clinicians’ Guide to Treating Complex ADHD
• Read: Treatment Troubleshooting Guide for Patients
• Replay: Substance Use Disorder and ADHD: Safe, Effective Treatment Options with Dr. Timothy Wilens

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Closed captions available.

Adults and caregivers harmed by the ongoing ADHD medication shortage have contributed thousands of impassioned, irate impact statements to a joint Request for Information (RFI) issued by the Federal Trade Commission (FTC) and U.S. Department of Health and Human Services (HHS) seeking public comment on drug prices and availability. Of the more than 5,600 public comments submitted so far, 62% (nearly 3,500) have mentioned ADHD and/or the stimulant shortage ongoing since October 2022.

Open through May 30, the RFI asks patients to submit comments, documents, and data regarding how the practices of two types of pharmaceutical drug intermediaries — group purchasing organizations (GPOs) and drug wholesalers — may contribute to generic drug shortages, including how both entities may influence the pricing and availability of pharmaceutical drugs. The RFI does not specifically ask about ADHD medications.

More than 300 medications, including chemotherapy drugs, medic drugs, antibiotics, and psychostimulants, are in short supply, according to David W. Goodman, M.D., LFAPA, an assistant professor in psychiatry and behavioral sciences at the Johns Hopkins School of Medicine. The RFI comments are overwhelmed with ADHD patients, in part, because “the shortage of ADHD medications has extended so long that there are more people actively engaged ‘in the conversation,’” he says.

“The ADHD drug shortage is now over a year old and continues to be problematic,” says Timothy Wilens, M.D., an associate professor of psychiatry at Harvard Medical School. “It is tiring to patients and clinicians, and it puts individuals at risk for academic and occupational difficulties and a myriad of other issues. In my practice, people are totally fed up with tracking down medications every month.”

Stimulant shortages continue to be a problem for many of the patients Ann Childress, M.D., treats at her private practice in Las Vegas. Childress, who is the current president of the American Professional Society of ADHD and Related Disorders (APSARD) says, “Each week, I have to rewrite several prescriptions to send to an alternative pharmacy because the patient’s regular pharmacy does not have the medication needed in stock. Many insurances will not cover brand-name medication in stock even when the generic is not available. I don’t think the shortage is going away any time soon.”

ADHD Patients Express Anger, Fear, Frustration in RFI

Harrowing personal stories of treatment disruptions and anxiety around finding — and paying for — ADHD medications were found easily in the comments submitted to the RFI.

“I get it: the FDA and DEA are looking to avoid Opioid Crisis II: The Stimulant Years. But attempting to absolve yourselves of your past failures at the expense of current patients is not the answer,” wrote Tiffany from Texas. “Especially considering ADHD patients are the least well-equipped to navigate complicated, multi-step tasks like calling multiple pharmacies — who often refuse to divulge inventory information without a valid script — and doctors who want us to verify a pharmacy has the drug in stock before they’ll send the script; finding and completing the necessary forms with insurance companies to beg for brand name coverage exceptions. And if, by some stroke of luck, we successfully amble through this Byzantine process with a filled prescription, we have exactly 29 days before we get to start it all over again, and all the while, our federal government is trying to gaslight us into believing there’s sufficient supply to meet demand.”

“When I try to fill my prescription, I’m made to feel like some kind of drug-seeker or addict,” wrote Susan from Washington. “People treat my diagnosis as spurious. People assume that I’m simply unwilling to tolerate the normal challenges of life and expect medication to make things easier. It’s hard not to wonder if people in power are deliberately creating this situation because they dislike people with my diagnosis, or if they don’t care enough about our needs to make a real effort.”

“This ADHD drug shortage has severely affected me,” wrote one anonymous commenter. “There have been many times I have been unable to fill my prescription. I work in a hospital with critically ill patients. Without medication, my inattention puts people’s lives at risk.”

“The shortage of necessary medication for ADHD is a huge problem for my family,” wrote Julia from New York. “Both my spouse and child take different medications to manage their ADHD symptoms. They choose not to medicate on days it would help but isn’t ‘necessary’ so that they can save medication for the most ‘necessary’ days. This kind of self-denial and hoarding is a ridiculous solution to a problem they did not create. My 18-year-old child is trying their best in school but feels they are not living up to their potential because they cannot participate appropriately. My child does not deserve to have their self-esteem eroded because a necessary medication that they deserve is not available to them.”

“My day-to-day living is unmanageable without Adderall,” wrote Sara from Florida. “I tried to go without medication for a few months because it was such a challenge to find… and I hated being treated like a drug addict at pharmacies. After a few months without meds, my impulsive spending led to an inability to pay my bills. I lost my home and endangered my job. All I did was think about the things I had to do and not do any of them.”

“I have had to leave one of my two jobs because I could not function at the level I needed to without my medication, and I suffered from a severe mental health crisis,” wrote Jennifer from Oregon. “My current insurance no longer covers the copay for Vyvanse, which costs upward of $400 for 28 pills. I have been relying on and thriving on this medication for half of my life, and it now costs more than my monthly car payment. Because of the astronomical costs, I have been unable to afford the medication that I need to function.”

“The ADHD medication shortage has negatively impacted every single part of my life and my child’s,” wrote Kelly from Iowa. “Attempting to fill prescriptions in the past two years or so has been an absolute nightmare. I have been forced to bundle my child up and drive up to 45 minutes away (one way) from our city to acquire our ADHD medication on many occasions. We have gone without or with a fraction of our prescribed dose for many days. I have spent time I could not spare searching for our ADHD medication. I have constant anxiety when one of our ADHD medications starts getting low each month. We have missed healthcare appointments, events, and social gatherings. We have lost friendships. My small business has suffered.”

According to an ADDitude survey of 11,013 adults and caregivers, at least 20% of ADHD patients were still impacted by the stimulant shortage in the summer of 2023. (Learn more about how the ADHD medication shortage has impacted ADDitude readers “Stop Treating Us Like We’re Addicts!” and “A Daily Nightmare:” One Year into the ADHD Stimulant Shortage.)

The deadline to submit public RFI comments is May 30, 2024. Add your testimony at Regulations.gov.

The public can also demand an end to the ADHD medication shortage by writing letters to representatives, the DEA, and the FDA using templates provided by ADDitude.

In addition to draining limited reservoirs of stamina, time, and patience, the monthly ordeal of searching for stimulants often includes upsetting encounters with pharmacy staff. Among ADDitude readers who use ADHD medication, 38% report that they’ve been made to feel like a “criminal” or “addict” when trying to obtain their prescribed medication. They share stories of encountering wariness, annoyance, and even downright hostility at the pharmacy, all of which exacerbates an already exhausting ordeal. In some cases, this refill process is so fraught with negative emotion that readers report re-thinking their decision to take medication at all.

You’re not alone if you have been made to feel judged, embarrassed, or interrogated. Here, readers vent about experiences they’ve had while trying to locate prescribed stimulants in the middle of an unprecedented shortage.

“For the love of all that is holy and all that is not, the pharmacies need to stop treating us like we are addicts. Yes, I am desperate to get my ADHD medication. But it is not so I can abuse it or sell it! It is because I desperately need the medication that makes my brain work well enough so that I can keep my job, so that I don’t make mistakes that might be dangerous, like getting distracted driving. Treating us, every single time, like we are possible criminals? It just makes everything so much harder.” —An ADDitude Reader

“I have to meet with the pharmacist each time I pick up my prescription, as if I don’t know what the medication does. It’s extremely embarrassing and it makes me debate whether I need to take it at all. Because I’m Black, there’s an additional layer to the stereotype of being ‘on drugs.’” –Paris, California

[Read: How the Adderall Shortage Is Casting a Long Shadow on ADHD Treatment]

“I compare it to making a heart patient run a marathon before filling their medicine. They are asking us to do the hardest task (that the medicine helps us with) and then they look at you weird for making the mistakes that ADHD causes! It usually ends in tears monthly.” —Brandy, Louisiana

“I’ve had pharmacies tell me to “take my drug-seeking somewhere else” when I called to ask if they had 10 mg Adderall in stock. Others have commented that I ‘don’t look like the kind of person who uses this,’ as though ADHD has a ‘look?’” —Mel, Idaho

“I had to have the pharmacist speak to one of the techs once because she made a comment about ADHD being a ‘made up’ thing. I was incredibly offended and was made to feel ashamed.” —Jennifer, Colorado

“I feel uncomfortable each time I have to get my prescription filled — a prescription that helps me function and not self-medicate as I used to prior to my diagnosis. It is incredibly frustrating!”  — An ADDitude Reader in Tennessee

[Read: “This Cannot Be the Price We Pay to Function.”]

“It’s a crappy process that I repeat for myself and both of my kids. I feel like I am begging for meds; it makes me feel looked down on and judged.” —Sarah, Washington

“I feel like a criminal every time I call a pharmacy. Often, I just go without, instead of feeling like a criminal.” —Mary Kate, Massachusetts

“I have to mentally prepare myself before I call the pharmacy because I never know how they’ll react. Phone calls are one of my biggest anxiety triggers, so it’s been really difficult to manage.” —Rachel, Kansas

“The pharmacy often has to revalidate the prescription, which makes me feel like I am being monitored for misuse. Increased inaccessibility makes me second-guess my choice to get medication assistance for my ADHD.” —Isabella, Ohio

“If you call for a refill a day early, you can get labeled as a drug-seeker. If something isn’t working or isn’t helping, I can’t talk to my doctor the way someone might be able to do with a sprained ankle.” —An ADDitude Reader

“We have never had a problem misusing our medications or being over-prescribed, and yet most mainstream pharmacies act like we’re trying to do something wrong when filling these prescriptions. I worry about my child not being willing to deal with this when they get older if they still need these medications.” —An ADDitude Reader

“My medication was out of stock everywhere and when I called around, the vast majority of pharmacies were very cold and callous about it and treated me like I was a crazy person for asking questions. They acted like if I needed ADHD medication I must be abusing it. Absolutely zero empathy for the fact that you can’t access a prescribed medication you need.” —An ADDitude Reader

Adderall Shortage: Next Steps

• Free Download: 2024 Scorecard of ADHD Treatments
• Read: Call to Action! Speak Up to End the ADHD Drug Shortage
• Read: The Real Reason ADHD Medication Supply Is Lagging Demand
• Hub: Stimulant Shortage

SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

Adults and caregivers reported that the process of searching for the right medication — the one with highest efficacy, fewest side effects, and covered by insurance — is often frustrating, but essential. Persevering through the often confusing, time-consuming, and inconvenient process leads to better management of ADHD symptoms in the end for most. Here, ADDitude readers share their experiences, both the bothers and benefits of trialing medications.

“There was one person in an ADHD support group who made a comment that changed my life. She mentioned that the seventh medication she tried was the right one for her. That made me decide to give medication a second chance, and try a few more. I could not have finished my Ph.D. without it.” — Heather, Canada

“Trial and error is generally a nightmare. School is not the best place to observe how a new med is or isn’t working; teachers usually don’t have the time, energy, or patience to report back accurately. We also had to change formulations several times due to the whims of insurance.” — An ADDitude Reader

“There are not enough resources to help people navigate going on and off medications while trialing. How long should I be on it? What about side effects? How does this relate to hormone changes throughout the month for women?” — Madeline, UK

[Download: Free Guide to Hormones & ADHD in Women]

“Medication trials have taken so long because our doctors are scared to do anything. It’s something that should be done quickly to find the optimal dose but they keep us in limbo because they’re not confident in their ADHD knowledge. We’re having to wait and wait and wait while our kids are struggling. It has a ripple effect on our entire household.” — An ADDitude Reader

“The process of trying out one medication after another slowly and methodically is very difficult to manage for most people who have ADHD.” — Tyler, California

“It was 10 years before I found a medication that helped me more than it made me feel worse. It’s important to kick a medication if it’s not working, even if it has worked previously.” — Juniper, Oregon

[Read: The ADHD Medication Stopped Working! How to Troubleshoot Treatment]

“Trial and error is hard. Then you find a medication that works and the manufacturer stops making it or the generic version, and you have to start the whole process again. So frustrating.” — An ADDitude Reader

“Finding the right match for children takes time and clear communication with schools and caregivers, which is sometimes very difficult.” — An ADDitude Reader

“I don’t feel that I have found the right medication yet. I’m very sensitive to medication and side effects also make it difficult to try different ones.” — An ADDitude Reader

“I have a really hard time tracking my symptoms and noticing changes on my own.” — Ashley, Minnesota

“The process of finding the right one can be very frustrating, but it’s worth being patient.” — Ali, North Carolina

“I wish there were easier ways to find the right medications for people with ADHD rather than trial and error.” — An ADDitude Reader

“Be patient. Give the medication time as you adjust dosage. Try other types if you need to. Everyone is different, and when you find the one that works, it is life changing in a fabulous way!” — Marcia, New York

“I’m hopeful that neuroscience will someday be able to treat ADHD without endless failed attempts with medication.” — An ADDitude Reader

Medication for ADHD Trial and Error: Next Steps

• Read: How Do We Know the Treatment Is Working?
• Read: Time to Switch to a New ADHD Medication?
• Watch: How to Optimize ADHD Medication – Achieving Better Symptom Management
• Learn: ADHD Medication Options – Stimulants, Non-stimulants & More

SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

I apprehensively open my prescription bottle and peer in. I pour its contents into my hand, double and triple checking my count of its contents. Dread washes over me; it’s time to get a medication refill.

The ADHD medication shortage that started in late 2022 – and still with no end in sight – has deeply and profoundly worn me down. I am exhausted. I am frustrated. I struggle immensely due to the extra time and effort I now have to invest to get the medication I need to function. Even though millions of us are affected by this shortage, I’ve felt isolated and hopelessly alone in navigating this overwhelming system that has failed us.

An Executive Function Gauntlet: The Outrageous Absurdity of Refills

I take both a long-acting and short-acting version of my ADHD medication, and have been doing so for a decade. Prior to the shortage, the process I followed to obtain medication was imperfect, but more doable than our current nightmare. I had grown accustomed to the task of getting a new prescription for each of my medications to bring to my pharmacy every month. I knew when I had to make an appointment with my doctor to request the prescriptions, and I diligently showed up to my pharmacy within the three-day refill window, as allowed by law, and was ready to wait the usual 45 minutes for both of my medications to be filled.

With the ongoing medication shortage, I only have about 10 blissful days a month where I’m not dealing with some aspect of refilling my medications. Now it’s not only a question of being within my three-day refill window but also relying on my medication to be in stock.

At every turn, obtaining the medication I need requires executive functioning – the very area that is impaired in ADHD, and for which medication, along with employing strategies and learning skills, improves. My prescriptions have gone from being filled on the same day to being filled on different days and then weeks apart. This means shifting things around to make room for more trips to the pharmacy, more phone calls to disgruntled staff, more things to complicate my day-to-day life, all while undermedicated. (As it turns out, living with impaired executive functioning sure takes a lot of executive functioning.)

[Read: How to Weather the Persistent Adderall Shortage]

More than once, I’ve been scolded by pharmacy staff for making the mistake of calling to request my prescription release one day too early. (As many ADHDers know, staying on top of dates is no easy task.) I was acridly reminded that this is a scheduled drug and that my refill is not due yet. Each time it’s happened, I say, “My apologies, thank you for your help,” silently chastising myself for messing up the dates, loathing that I have to start this process all again the next day.

I also started rationing my medication, skipping doses on weekends to make sure I could at least have medication to do my job. After a few months of this, my frustration gave way to panic when my pharmacy said it had no idea when the next shipment would arrive.

I once contacted 15 different pharmacies over three days, trying to find a location that not only had medication in stock, but that would be willing to take my prescription. Pharmacy after pharmacy told me that their location was no longer accepting new ADHD patients. One pharmacy even had the audacity to laugh at my provider when they tried to call my prescription in. This system, designed to prevent drug abuse, was now forcing me into the role of a literal drug seeker despite being on my exact same dosages for ten years – the irony of which was not lost on me.

One pharmacy was willing to take my prescriptions, but getting there and back would easily take me an hour, and they could only put me on the wait list. Another pharmacy was closer, and while they didn’t have my exact dosage in stock, they told me that they’d be able to fill my prescription if my doctor split my dose between two lower-dose pills. I hesitated, anxious to make the request because my doctor had already submitted and cancelled two sets of my prescriptions that month. I worried that the back-and-forth would flag me as a troublesome patient. Thankfully my doctor was willing to accommodate. Still, I thought to myself that this cannot be the price we pay to function.

[Read: The Real Reason ADHD Medication Supply Is Lagging Demand]

Then there’s the work of verbally calling to release my prescriptions, which can take anywhere from three minutes to a very literal two hours on hold, only to be hung up on. I can’t just leave a voicemail to release my prescription – there is no way to confirm they received it without calling in again.

At my doctor’s appointments, on the phone with the pharmacy, and at the pick-up window, I started venting my frustrations in the form of humor. I joked that this system is an executive function gauntlet for people with ADHD – it certainly wasn’t designed with us in mind! Yet these jokes only got an occasional weary smile. Meanwhile, I simmered, knowing this “joke” was my real life.

Trapped in a Solitary, Multi-Year Riptide

I have educated myself on the  shortage, reading endless articles about it. I have observed how the different agencies, producers, and regulators involved shift the blame. Yes, it is a complex system, but that does not diminish any one participant’s part in making it better or making it worse. I have written to Congress. I have listened to countless stories of the strife everyday folk endure to get their prescriptions.

Every story I hear makes me feel like each individual with ADHD is on their own little island. We’re able to send along messages in a bottle, but we’re unable to collectively make those in power recognize our stories and our pain. I am sick of feeling trapped in this riptide all by myself, subject to forces that I cannot control, powerless to take care of my own physical and mental health. I am saddened that there doesn’t seem to be a way for the 8.7 million of us with adult ADHD (and parents of children with ADHD) to collectively advocate or have a say in this process. We deserve a seat at the table.

A Seat at the Table: How We Can Make Our Voices Heard

The ADHD medication shortage cannot go on. It has caused far too much damage and pain for those of us who simply want to live and work and achieve what we are capable of by limiting the burden of this neurodevelopmental disorder.

I have done all that I can on my part – following all of the expert advice during this shortage – to independently manage my health. I am working toward medical school, and I have thought long and hard about what I’d do if I could magically fix this system. Perhaps new monthly prescriptions should only be required in the first year that a newly diagnosed patient is trying different ADHD medications and dosages. From there, documentation attesting to ADHD and the continued need for medication can be submitted to the DEA, insurance companies, and any relevant regulatory board in order for a patient to be granted the privilege to have their medication treated like any other normal, regularly prescribed medication.

Pharmacies would be able to better predict their orders of stimulant medication instead of having to turn people away with valid prescriptions because they’re already overwhelmed with managing this shortage. I do not deny that stimulant medication has potential for abuse, and a regulatory system is appropriate for this class of medications. But the bottom line is this: There must be a way for diagnosed ADHD patients who have a history of established care to be able to reliably obtain their medications.

But work must be done on all fronts. Individually, we are isolated. Yet we have power in our multitudes and in our stories. It’s time to start to #ADDUsUp. We can all be #ADHDvocatesForChange.

• Share your stories of and frustrations with navigating the ongoing shortage, plus ideas for how to make the world better for neurodivergent individuals on social media using the above hashtags.
• As you share your story, tag celebrities with ADHD and ADHD organizations/platforms and demand that they unabashedly call out the shortages and seek not just answers, but change.
• Write to your U.S. representatives, the DEA, and the FDA, who must understand the real-life consequences of drug shortages and current policies for the millions of us who live with ADHD. Untreated or poorly treated ADHD wrecks lives, and medication is an important tool upon which we rely for our health and wellbeing. Highlight how policy at the governmental, regulatory, and healthcare system-level (including procedures at insurance companies and manufacturers/distributors of medications) directly impacts the care and wellbeing of ADHD patients.
• Submit comment to the Federal Trade Commission (FTC) and U.S. Department of Health and Human Services (HHS), which are seeking public input to understand how lack of competition and contracting practices may be contributing to drug shortages. The deadline to submit public comments is April 15, 2024.

Together we can elevate our voices, share our experiences, and demand more of our institutions and those in power. If we, a bunch of executive functioning-challenged ADHDers can get organized and start a movement, then those with power have no excuse for ignoring breaks in this system. It’s time for them to do their part, too.

ADHD Medication Shortage: Next Steps

• Special Report: ADHD Treatments Scorecard from ADDitude Readers
• News: ADHD Medication Costs Soar
• Hub: Adderall Shortage

Elizabeth (Elle) Sharrard is an aspiring medical student and a proud #ADHDvocate who hopes to empower people to use their voices to improve the world for all. Elle’s blog post inspired the creation of ADDitude’s call-to-action scripts for contacting representatives about the ongoing ADHD drug shortage.

SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

• Submit comment to the FTC and HHS
• Contact Your U.S. Congressional Representatives
• Send a letter to the DEA
• Send a letter to the FDA

Give Your Input on the Drug Shortage

The Federal Trade Commission (FTC) and U.S. Department of Health and Human Services (HHS) are seeking public input to understand how lack of competition and contracting practices by two pharmaceutical drug middlemen groups — group purchasing organizations (GPOs) and drug wholesalers — may be contributing to drug shortages.

The agencies are seeking public input on a variety of subjects under this topic, including whether and to what extent lack of competition among these pharmaceutical middlemen groups impacts patients, hospitals, healthcare providers (including small healthcare providers and rural hospitals), pharmacies, generic manufacturers, and other suppliers.

Submit comments by May 30, 2024 at www.regulations.gov. (Direct link to the comment section)

Contact Your U.S. Congressional Representatives

• Find contact information for your U.S. Congressional Representatives here.
• Send the following message to your representative. (Want to send an email? Consider doing it via democracy.io)

Dear Representative,

Millions of American caregivers and patients with attention deficit hyperactivity disorder (ADHD) have endured unprecedented healthcare disruptions and adverse outcomes since the Federal Drug Administration first reported shortage of Adderall, the amphetamine mixed salts used to treat ADHD, in October 2022.

Patient advocates and legislators have called on federal agencies to help combat the nationwide Adderall shortage, yet it continues to impact the health and wellbeing of millions. In fact, the shortfall has extended to methylphenidate (Ritalin), lisdexamfetamine dimesylate (Vyvanse), and more ADHD medications.

Stimulant medication is a first-line treatment for ADHD, a neurodevelopmental condition that impacts all facets of living throughout the lifespan. Research shows that stimulants are effective, safe, and vital to improving the health outcomes of individuals with ADHD.

The drug shortage has created immense hardship for individuals already living with a highly stigmatized condition. Some caregivers and patients must endure hours of phone calls and travel each month to access pharmacies that can fill their prescriptions. Providers have switched patients to less-than-optimal-but-available alternative medications. Desperate patients are endangering their lives by procuring counterfeit drugs on the black market and using illicit substances to self-medicate.

Patients unable to access their prescribed ADHD medications have lost jobs, and their ability to carry out daily tasks or adequately care for their children, many of whom have ADHD as well. The shortage has led to lower academic performance and increased behavioral and emotional problems for children, who may bear the repercussions for a lifetime.

Patients who can access their ADHD medication must now contend with higher drug prices, which are outpacing inflation. In some cases, prices for stimulant medications have doubled and tripled since the shortage began, further derailing treatment for many.

The causes for the shortage are mystifying, especially as the DEA, FDA, and drug manufacturers trade blame. Many caregivers and patients with ADHD feel the FDA’s and DEA’s lack of transparency and unwillingness to take meaningful action to end the shortage reflects a deep-seated belief that ADHD is not a valid diagnosis or a real, debilitating condition.

I urge you to identify steps that relevant agencies and policymakers can take to end this shortage. I support any legislative proposals to this end, including calling a congressional hearing to understand what the FDA and DEA are doing to mitigate the shortage and improve treatment outcomes for patients prescribed ADHD medication.

I appreciate your timely focus and attention to this dire situation. The livelihood of millions of Americans depends on your swift action.

Sincerely,

Contact the DEA

The Honorable Anne Milgram
Administrator
U.S. Drug Enforcement Administration
8701 Morrissette Drive
Springfield, VA 22152

Dear Administrator Milgram,

Millions of American caregivers and patients with attention deficit hyperactivity disorder (ADHD) have endured unprecedented healthcare disruptions and adverse outcomes since the Federal Drug Administration first reported shortage of Adderall, the amphetamine mixed salts used to treat ADHD, in October 2022.

Patient advocates and legislators have called on federal agencies to help combat the nationwide Adderall shortage, yet it continues to impact the health and wellbeing of millions. In fact, the shortfall has extended to methylphenidate, lisdexamfetamine dimesylate, and more ADHD medications.

Stimulant medication is a first-line treatment for ADHD, a neurodevelopmental condition that impacts all facets of living throughout the lifespan. Research shows that stimulants are effective, safe, and vital to improving the health outcomes of individuals with ADHD.

The drug shortage has created immense hardship for individuals already living with a highly stigmatized condition. Some caregivers and patients must endure hours of phone calls and travel each month to access pharmacies that can fill their prescriptions. Providers have switched patients to less-than-optimal-but-available alternative medications. Desperate patients are endangering their lives by procuring counterfeit drugs on the black market and using illicit substances to self-medicate.

Patients unable to access their prescribed ADHD medications have lost jobs, and their ability to carry out daily tasks or adequately care for their children, many of whom have ADHD as well. The shortage has led to lower academic performance and increased behavioral and emotional problems for children, who may bear the repercussions for a lifetime.

Patients who can access their ADHD medication must now contend with higher drug prices, which are outpacing inflation. In some cases, prices for stimulant medications have doubled and tripled since the shortage began, further derailing treatment for many.

In August 2023, your agency issued a joint statement with the FDA outlining steps to alleviate the shortage. The letter assured Americans with ADHD that your agency takes ADHD and its treatment seriously. Your agency’s subsequent lack of action and transparency suggests that you do not.

I understand that the DEA cannot compel a manufacturer to begin or change their drug production, however I also know that the agency has the authority, responsibility, and opportunity to adjust production quotas and to otherwise move us toward solutions to these significant drug shortages. I urge the agency to stop pointing fingers and start devising solutions to a dangerous ongoing health crisis. I call on the DEA to expedite plans to ensure patient access to the full suite of medications used to treat ADHD, and to do so with urgency.

The livelihood of millions of Americans depends on your swift action. Thank you very much for your timely focus and attention to this important issue.

Sincerely,

Contact the FDA

Send this letter as an email to the FDA

The Honorable Robert Califf
Commissioner of Food and Drugs
U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, Maryland 20993-0002

Dear Commissioner Califf,

Millions of American caregivers and patients with attention deficit hyperactivity disorder (ADHD) have endured unprecedented healthcare disruptions and adverse outcomes since the Federal Drug Administration first reported shortage of Adderall, the amphetamine mixed salts used to treat ADHD, in October 2022.

Patient advocates and legislators have called on federal agencies to help combat the nationwide Adderall shortage, yet it continues to impact the health and wellbeing of millions. In fact, the shortfall has extended to methylphenidate, lisdexamfetamine dimesylate, and more ADHD medications.

Stimulant medication is a first-line treatment for ADHD, a neurodevelopmental condition that impacts all facets of living throughout the lifespan. Research shows that stimulants are effective, safe, and vital to improving the health outcomes of individuals with ADHD.

The drug shortage has created immense hardship for individuals already living with a highly stigmatized condition. Some caregivers and patients must endure hours of phone calls and travel each month to access pharmacies that can fill their prescriptions. Providers have switched patients to less-than-optimal-but-available alternative medications. Desperate patients are endangering their lives by procuring counterfeit drugs on the black market and using illicit substances to self-medicate.

Patients unable to access their prescribed ADHD medications have lost jobs, and their ability to carry out daily tasks or adequately care for their children, many of whom have ADHD as well. The shortage has led to lower academic performance and increased behavioral and emotional problems for children, who may bear the repercussions for a lifetime.

Patients who can access their ADHD medication must now contend with higher drug prices, which are outpacing inflation. In some cases, prices for stimulant medications have doubled and tripled since the shortage began, further derailing treatment for many.

In August 2023, your agency issued a joint statement with the DEA outlining steps to alleviate the shortage. The letter assured Americans with ADHD that your agency takes ADHD and its treatment seriously. Your agency’s subsequent lack of action and transparency suggests that you do not.

Although I understand that the FDA cannot compel a manufacturer to begin or change their drug production, the agency has the authority, responsibility, and opportunity to move us toward solutions to these significant drug shortages. I urge the agency to stop pointing fingers and start devising solutions to this dangerous ongoing health crisis. I call on the FDA to expedite plans to ensure patient access to the full suite of medications used to treat ADHD, and to do so with urgency.

The livelihood of millions of Americans depends on your swift action. Thank you very much for your timely focus and attention to this important issue.

Sincerely,

Small studies suggest that an individual with trauma may be predisposed to ADHD, just as anyone with a history of trauma is predisposed to depression, anxiety, and post-traumatic stress disorder (PTSD).

The task of a good diagnostician is to identify a patient’s current diagnoses and treat them, focusing particularly on the most pressing and problematic symptoms. If all of those appear to be symptoms of PTSD, we treat that with a different kind of therapy called trauma-focused cognitive behavioral therapy (TF-CBT). If we find that ADHD symptoms linger even after the trauma is addressed, then we add in ADHD treatment as well. The general rule is to treat the most pressing problem first, then determine whether there are other problems, such as ADHD, that also require treatment.

Q: What do you think about genetic or blood testing, and using those results to choose a prescribed medicine?

These blood tests look at the enzymes in the liver and some of the blood cells to learn how antidepressants, in particular, metabolize in an individual. Enzymes come in different variants, some of which may metabolize an antidepressant very quickly. Other variants of the same general enzymes metabolize medication very slowly.

[Read: What to Expect When You Start Depression Medication]

If someone metabolizes an antidepressant quickly, they’re going to need a higher dose. A slow metabolizer given a doctor’s standard dose will be more likely to have higher blood levels of the medication and more likely to experience side effects.

Q: Can taking certain medications during pregnancy cause ADHD in the child?

The medications people most commonly worry about during pregnancy are SSRIs taken for depression or anxiety. However, there is no evidence that taking SSRIs poses a risk. On the other hand, we do know that taking opioids or heavily abusing stimulants, such as methamphetamine or cocaine, can have a negative effect. Opioids, the top concern on my own list, have been linked to birth defects. Federal and state health agencies provide resources online about reducing the risk of birth defects through behavioral and environmental exposures.

[Read: Treating for Two – ADHD Meds in Pregnancy]

Q: What do researchers think will be different about ADHD treatment in, say, 10 years?

ADHD is a final common pathway of external symptoms. Like a bad cough, it can have many different causes. A cough might occur because of allergies, an infection such as pneumonia, or even cancer. We can find many causes using physical examinations, X-rays, blood tests, and so on.

We don’t yet have precise tools to do that for ADHD. But there is reasonable hope that advances in research will help us develop testing to identify an individual’s specific ADHD causes. And when we figure that out, we can begin to think about preventing and treating ADHD in a very person-specific way. But this is 10 to 20 years away.

PTSD Symptoms and ADHD: Next Steps

• Read: The Science of Fear – Probing the Brain Circuits That Link ADHD and PTSD
• Learn: A Playbook for Post-Traumatic Growth
• Read: Getting Meds Right – Is It in the Genes?
• Learn: The Future of ADHD Research Looks Like This

As if the ADHD medication shortage wasn’t frustrating enough, patients are now forced to contend with higher prices that could further derail treatment. Certain ADHD medications have doubled or tripled in cost since the shortage began in October 2022, according to a report published in USA TODAY.

The newspaper analyzed the prices that retail community pharmacies pay for common ADHD prescriptions. For specific dosages of methylphenidate (i.e., Ritalin and Concerta), the average price paid by small to mid-sized independent and chain pharmacies nearly doubled from late 2022 to December 2023. The average cost of certain versions of dexmethylphenidate (Focalin) more than doubled during that period, according to the December 2023 report.

“Drug manufacturers may change the list prices of their drugs at any time after launch,” says the Assistant Secretary for Planning and Evaluation (ASPE), principal advisor to the Secretary of the U.S. Department of Health and Human Services. “Over the period from January 2022 to January 2023, more than 4,200 drug products had price increases, of which 46% were larger than the inflation rate. The average drug price increase throughout the period was 15.2%, translating to $590 per drug product.”

The average price change between 2021 and 2022 was 11.5%, an increase of $172, on average.

“Most drug manufacturers make changes to their prescription drug list prices in either January or July of each year, with the greatest number of changes taking place in January,” ASPE reported. “From January 2022 to January 2023, price changes ranged from a decrease of 99% to increases of over 3,000%.”

Drugs.com reported that, without insurance coverage, a supply of 100 capsules of 10mg of Adderall XR costs around $759.54, while 100 tablets of 5mg short-acting Adderall costs around $1,139, depending on the pharmacy. A supply of 100 capsules of Vyvanse costs around $1,306.

Insurance coverage is the most important deciding factor when choosing an ADHD medication for 19% of recent Medscape survey respondents with ADHD, according to Ann Childress, M.D., during a presentation at the 2024 APSARD conference on January 17. ADDitude readers have likewise felt the sting of cost increases for their prescription stimulants.

“My son is on Adderall XR 10mg. The price went from $10 in December to $54 in January to $158 this month,” says one reader. “When I called our prescription care plan, they said the price increase was due to supply and demand. It’s scary how the cost of a medication can fluctuate so much. Fortunately, we have covered the cost, but what about families who can’t?”

Says another reader, “The price differential is extreme: Adderall XR costs about $5 for a 30-day supply; Vyvanse costs $165 for a 30-day supply.”

One reader found a solution with the help of her physician and pharmacist. “My son’s doctor prescribed Cotempla XR-ODT, but my insurance wouldn’t cover it until he tried two other medications first,” the reader says. “It would cost $350 per month if they did approve it. Thankfully, our doctor knew this was a problem for many of his patients. He sent the prescription to a pharmacy that input the manufacturer’s coupons after verifying what our insurance would and would not pay for. Now, our copay is only $35. I’m so grateful for our doctor and the pharmacy who helps their customers get the medicine they need without going bankrupt.”

The U.S. Food and Drug Administration (FDA) first reported a shortage of Adderall in October 2022. More than a year later, millions of patients and caregivers still struggle to fill prescriptions, with no end in sight.

Nobody likes taking medicine. So if a teenager doesn’t like taking medicine, I get it, one hundred percent. You can’t force it down their throats. You have to engage with them.

I ask: “What are the things in life that you wish were a little different?” Then I reflect what they communicate back to them: “It sounds like school is a struggle. We have some things that will help with that. Let’s talk about what they are, because we have a variety of treatment options and I want you to help choose one.”

[Read: The Key to Reducing Teens’ Risky Behavior? It Might Be Medication Coverage]

I make it clear that I’m not telling the teenager what to take, and that we’re only going to move forward if they think it helps enough to continue.

So, the key is really shared decision making, where you’re engaging the patient, where they get to be in control. A great example of this is what Maggie Sibley, Ph.D., does in her STAND program. She gives the adolescents in her group therapy a handout, which includes two dozen or so personal values, things like making more friends, passing classes, earning money. Then she asks the teenager, “What’s important to you?” and has them circle their answers on the sheet.

[Read: ADHD in Teens – How Symptoms Manifest as Unique Challenges for Adolescents and Young Adults]

It’s not what’s important to your mom, dad, clinician, psychiatrist, teachers, or therapists, but what’s important to you? Maybe that’s friends, maybe it’s being creative or social, making better grades, becoming a better athlete, feeling better about yourself, being less stressed. The question is: What’s important to you?

When we ask this question, we move away from adults talking at teens and move towards the beginning of a real conversation. It’s a really effective way to engage teens in their ADHD treatment.

Shared Decision Making: Next Steps

• Read: The Teens’ Guide to Making Meds Work
• Watch: ADHD Ages & Stages – Common Challenges and Practical Strategies for Teens and Young Adults with ADHD
• Read: “Stop Trying to Fix Everything!” Scripts for Reflective Listening

The content for this article was derived from a webinar presented by The American Professional Society of ADHD and Related Disorders (APSARD) titled “ADHD Treatment in the Primary Care Setting: The Teenage Years” with Greg Mattingly, M.D., which was broadcast on October 13, 2023.

Anxiety is one of the most common comorbidities in teens and college students with ADHD, especially for girls. More than half of girls with ADHD will have some level of anxiety.

When I’m considering how to proceed with treating comorbid ADHD and anxiety, I always think: “What’s driving the bus?”

[Read: ADHD and Anxiety – Symptoms, Connections & Coping Mechanisms]

For some people, the anxiety is a true, primary diagnosis. This would include cases where the anxiety takes the form of OCD or panic disorder. In those cases, I would likely start by treating the anxiety, and then move on to treating the ADHD.

Then there are other situations where the anxiety may be directly related to the ADHD. In these cases, the anxiety may arise because the patient is feeling out of control, unable to manage time, unable to keep all these different balls in the air. Is the patient anxious because they’re overwhelmed by these things? If so, treatment of ADHD can help quite a bit with anxiety.

[Self-Test: Generalized Anxiety Disorder in Adults]

In these cases, I’ll usually start by treating the ADHD. While stimulants can sometimes exacerbate anxiety in some patients, this can typically be avoided by using long-acting, smooth-release formulations of stimulants and by starting low and going slow as you titrate dosage, monitoring anxiety throughout. Atomoxetine or viloxazine can also be effective at treating ADHD in people with co-occurring anxiety disorders. If other options don’t prove effective, guanfacine is an ADHD treatment option that doesn’t exacerbate anxiety.¹

Anxiety in Teens: Next Steps

• Read: 5 Ways to Reframe Anxiety for Your Worried Teen
• Read: What If You Are Enabling Your Child’s Anxiety?
• Watch: Anxiety in Children: Overlooked Signs and Effective Supports
• Read: 6 Types of Anxiety

The content for this article was derived from a webinar presented by The American Professional Society of ADHD and Related Disorders (APSARD) titled “ADHD Treatment in the Primary Care Setting: The Teenage Years” with Greg Mattingly, M.D., which was broadcast on October 13, 2023.

SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

Sources

¹Mattingly, G., Wilson, J., Ugarte, L., & Glaser, P. (2021). Individualization of attention-deficit/hyperactivity disorder treatment: Pharmacotherapy considerations by age and co-occurring conditions. CNS Spectrums, 26(3), 202-221. doi:10.1017/S1092852919001822

A study by Tim Wilens, M.D., and colleagues followed children and teens who were treated for ADHD with the non-stimulant medication atomoxetine, a selective norepinephrine reuptake inhibitor (SNRI). The children’s symptoms significantly improved; their ADHD rating scale scores dropped from a 34 to a 21. However, 21 is still quite a high level of symptoms. I want all symptoms on the ADHD rating scale to be mild or minimal, on average, which means achieving a score under 18.

So, the researchers added OROS methylphenidate to the atomoxetine, and the subjects’ ADHD symptoms dropped almost by half to 12. At this point, there was very little functional impairment from the ADHD symptoms: all 18 symptoms were either mild or undetectable. In this study we see demonstrable benefits of combination therapy, adding a stimulant on top of a non-stimulant for optimized management of ADHD symptoms.

Q: When would you consider switching a patient from a stimulant to a non-stimulant for ADHD?

In the following situations:

• If I suspect someone with ADHD is misusing their stimulant, I’m going to switch to a non-stimulant or a longer-acting preparation with less chance for abuse.
• If the stimulant is making a patient moody or irritable, or if it significantly impairs sleep or appetite, I’m going to try switching to a non-stimulant.
• If I’m contending with breakthrough efficacy issues, I’ll layer on the non-stimulant to see how much that helps. Then, if I think I can pull back the stimulant, I may do that and be stimulant-sparing in those patients.

How and when to make the switch depends on the patient. It’s important to note you don’t have to go cold turkey on the stimulant. Quite often, there’s an overlap. Sometimes, I layer on the non-stimulant and give it time to start working.

[Read: ADHD Medication Side Effects No One Should Tolerate]

We know from Wilens’ research that a stimulant added to a non-stimulant can be effective, but questions remained about the efficacy of a non-stimulant added to a stimulant. Some of the atomoxetine research has shown that, if they have already tried a stimulant, a patient is less likely to respond to atomoxetine.

That led some colleagues and I to investigate the efficacy of viloxazine, an SNRI which also has some serotonin effects, in patients who had previously used stimulants. For adults with ADHD who had previously used a stimulant, we saw significant improvement in ADHD symptoms on viloxazine, which is sold under the name brand Qelbree.

We don’t know exactly why patients responded well to the addition of viloxazine; maybe it’s the mechanism of action. Regardless, this is promising, particularly when we’re considering switching patients to a non-stimulant.

[Read: Non-Stimulant ADHD Medication Overview] 

Q: Which patients may benefit from adding an alpha agonist, like clonidine or guanfacine, to a stimulant medication?

For certain patients, adding guanfacine on top of a stimulant can be really beneficial. Specifically, I’ve seen this help patients who have impulse-control issues, people with emotional impulsivity, and people who have a hard time settling down at night.

For my patients with tics, I’ve found that a little bit of an alpha agent plus a little bit of a stimulant is better than either one by itself. The stimulant by itself increases the level of tics, and the alpha agent by itself isn’t quite good enough when it comes to cognitive function. The two of them together, however, are sometimes really beneficial in treating the ADHD and the tics.

Combination Therapy: Next Steps

• Read: ADHD Medication Options – Stimulants, Non-stimulants & More
• Read: Multiple Medications for Your Child – What You Need to Know
• Free Resource: ADHD Medication Tracking LogThe content for this article was derived from a webinar presented by the American Professional Society of ADHD and Related Disorders (APSARD), led by Greg Mattingly, M.D., on October 13, 2023.

SUPPORT ADDITUDE
Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

Teens aged 18 to 19 are more likely than any other age group to stop taking prescribed medication for the treatment of attention deficit hyperactivity disorder (ADHD), according to a new study published in The Lancet.¹ The study, which sought to determine the rate of ADHD treatment discontinuation across the lifespan, found that 61% of young adults (ages 18 to 24) discontinued treatment within a year of beginning it, almost double the rate of discontinuation in kids under 12.

The retrospective, observational study analyzed population-based databases from Australia, Denmark, Hong Kong, Iceland, the Netherlands, Norway, Sweden, the UK, and the United States, to track patterns of medication initiation, persistence, and discontinuation in the five years after starting treatment. Included in the study were 1,229,972 individuals (60% males, 40% females), aged four and older.

The study revealed that one year after beginning treatment, medication was discontinued by:

• 61% of young adults (aged 18 to 24)
• 53% of adolescents (aged 12 to 17)
• 52% of adults (aged 25 and older)
• 36% of children (aged 4 to 11)

The age at which medication was most commonly discontinued was between 18 and 19 years old.

Medication Adherence Challenges

The reasons teens, adults, and children stop taking medication are plentiful and varied. According to a recent ADDitude treatment survey with more than 11,000 respondents, the top reasons cited by adults and caregivers included:

• Side effects
• Medication availability
• Comorbid conditions
• High cost
• A lack of information and metrics to gauge efficacy
• Availability of providers who understand ADHD

This last barrier to medication continuation is particularly challenging for adults, both young and old, says William Dodson, M.D., in his article “4 Reasons Adults Give Up on ADHD Medication.”

“It’s not easy for patients to find clinicians who are knowledgeable about diagnosing and treating adult ADHD,”² Dodson explains. “Limited experience with pharmacotherapy may result in difficulty gauging a patient’s response to medication and optimizing accordingly.”

The trial-and-error process, in which patients explore the efficacy of different dosages, formulations and possibly different types of ADHD medication, is essential to discovering an optimal treatment plan for ADHD, which varies widely from person to person, even within the same family. This often onerous process can be made far less confusing and stressful when patients work with a clinician who is highly knowledgeable about ADHD. Such a clinician can address the concerns that often prevent patients from starting medication, persevering through the trial-and-error process, and continuing consistent treatment.

“If people are ambivalent and fearful about trying medication, I found they commonly give up at the first sign of difficulty,” Dodson tells ADDitude. “They are often relieved that their fears have been proven correct and that the subject of medication is off the table.”

Unique Considerations for Young Adults and Teens with ADHD

The study’s key finding — that young adults aged 18 to 24 are more likely than any other age group to stop taking medication — is one that resonates with many parents and clinicians, who often find that adolescents resist ADHD medication. This causes concern because young adulthood can be a challenging time, as teens transition to more independent living, begin navigating college, and/or start a job.

Young adults can discontinue medication for a unique set of reasons that relate to their growth and development, according to Wes Crenshaw, Ph.D., and Larry Silver, M.D., in the ADDitude article titled “When Your Teen Refuses to Take ADHD Medication.” These reasons include:

• Exerting independence
• Trying to fit in with peers
• Concerns about “flattening” of personality
• Appetite suppression and sleep trouble

“The best way to sell medication to a teen or young adult is with honesty,” explain Crenshaw and Silver. “Listen to your teen’s complaints, and validate them; Managing medication is difficult, after all. For most children, teens, and adults who have been correctly diagnosed with ADHD, part of accepting the condition is to accept the implications of treatment: On one hand, ‘We can help you,’ and on the other, ‘Treatment is not a walk in the park.’”

For teens and young adults who are resistant to medication but benefit from it, Crenshaw and Silver advise suggesting to teens that they try an experiment. Teens take their ADHD medication for a week, then skip it for a week. During both periods of time, teens should take detailed notes about how they’re doing academically, emotionally and socially. For younger teens who live at home, parents can do the same, and teachers can be enlisted to offer feedback. Have the teen compare the notes from the medicated week with the notes from the non-medicated week. This may help them see the situation more objectively and can lead to treatment continuation.

Sources

¹Brikell, I. Yao, H. Li, L. Astrup, A. Gao, L. Gillies, M. (2023). ADHD medication discontinuation and persistence across the lifespan: a retrospective observational study using population-based databases. The Lancet. DOI: https://doi.org/10.1016/S2215-0366(23)00332-2

²Goodman, D. W., Surman, C. B., Scherer, P. B., Salinas, G. D., & Brown, J. J. (2012). Assessment of physician practices in adult attention-deficit/hyperactivity disorder. The primary care companion for CNS disorders, 14(4), PCC.11m01312. https://doi.org/10.4088/PCC.11m01312

Long-term use of ADHD medications may increase the risk of cardiovascular disease (CVD) in children and adults, according to a new study published in JAMA Psychiatry.¹ However, ADHD experts caution against changing ADHD treatment based on these findings.

“The substantial improvement in ADHD impairments significantly outweighs the study’s risk, which is easily monitored and addressed by the prescribing clinician,” David W. Goodman, M.D., LFAPA, assistant professor in psychiatry and behavioral sciences at the Johns Hopkins School of Medicine, told ADDitude. “I hope that patients and prescribers don’t overemphasize the study’s findings by stopping effective medication or not prescribing when clinically indicated.”

The case-control study suggests that the potential for cardiovascular disease increases by an average of 4% each year a patient takes ADHD medication (stimulants and non-stimulants). The percentage rose to 23% for some people who used ADHD medication for more than five years compared with those who did not.¹

Patients who used methylphenidate (brand names: Ritalin, Concerta, Focalin, etc.) and lisdexamfetamine (brand name: Vyvanse) had a higher risk of hypertension and arterial disease compared with people who did not take ADHD medication. The non-stimulant medication atomoxetine (brand name: Strattera) was statistically significant only for the first year of use.

The study’s cohort comprised more than 278,000 individuals with ADHD, aged 6 to 64, identified from the Swedish National Inpatient Register and the Swedish Prescribed Drug Register. Researchers monitored the patients for hypertension, heart failure, arrhythmias, and ischemic, cerebrovascular, and thromboembolic diseases for an average of four and up to 14 years between 2007 and 2020. During the follow-up period, slightly less than 5% of the study’s cohort had received a CVD diagnosis.

“The conclusion of this study sounds really scary, but it’s not,” ADHD expert Russell A. Barkley, Ph.D., said on his YouTube channel, Weekly Research Update. “The vast majority [95%] had no risk for CVD. These small increases in CVD risk are well outweighed by the benefits of treatment compared to no treatment at all.”

Barkley considered an alternative explanation for the findings: “The study did not control in any way the severity of ADHD,” he said. “This is important because we know that the more severe your ADHD, the more likely you’re going to be prone to various cardiovascular problems, specifically hypertension, arterial disease, and so on. It is possible that people with more severe ADHD take medications for longer periods than people with less severe ADHD. So, it may not be the duration of medication use that’s the issue. Duration could be a marker for the severity of your disorder.”

Further, the observational nature of the study means that the researchers “could not prove causality” between ADHD medication and cardiovascular disease.

Peter Jensen, M.D., Founder of the REACH Institute, which trains clinicians in the diagnosis and treatment of mental health disorders in children, told ADDitude that patients in the JAMA Psychiatry study could have had co-occurring conditions like diabetes or obesity that raised their risk of cardiovascular disease.

“If a child diagnosed with ADHD has a family history of unusual heart rhythms, then it could make sense for that child to have an EKG before being prescribed a stimulant to manage symptoms. Otherwise, an EKG would not be necessary for children because the risk for a cardiac event is trivial,” he said, likening it to the odds of getting hit by lightning.

“This is what I’d say to parents of my patients: The impact of ADHD causes all kinds of problems if it’s untreated,” Jensen said. “School failure, substance use, and as an adult, not doing well in a job or getting fired, breakups in marriages — these are known risks when ADHD is not well managed.”

He said the JAMA Psychiatry study is relevant in older populations because the risk for cardiovascular disease generally increases with age. “But even then, I would say to my patients, ‘How’s your diet, exercise, sleep, other health habits?’ These are the risks (for heart problems) as best as we know. The study didn’t look at these things,” Jensen said. “The risk from stimulant use is basically less than the risk of being obese, of having sleep problems, and less than the risk of not getting regular exercise. So, if you’re thinking, what is the risk of cardiovascular disease? By far, obesity is worse than years of exposure to stimulants.”

Jensen headed up the National Institute of Mental Health study, the Multimodal Treatment of Children with ADHD (MTA), which followed nearly 600 children taking stimulants to manage symptoms for 16 years — from elementary school to young adulthood — beginning in 1992. He said those study findings detected no meaningful change in cardiovascular risk.²

In addition, a November 2022 meta-analysis of 19 observational studies from the last 15 years, including 3.9 million participants, found no statistically significant association between ADHD medications and cardiovascular disease, even among middle-aged and older adults. ³

That study, published in JAMA Network Open, was the most comprehensive systematic review and meta-analysis of longitudinal observational studies to date on the association between ADHD medication use and the risk of CVD and included patients from the United States, South Korea, Canada, Denmark, Spain, and Hong Kong.

The American Academy of Pediatrics (AAP) recommends treating ADHD in children and adolescents aged 6 to 18 with FDA-approved medications, plus parent training in behavior modification and behavioral classroom interventions. Research studies like this one conducted by scientists at McGill University have found that “stimulant medications are most effective, and combined medication and psychosocial treatment is the most beneficial treatment option for most adult patients with ADHD.” Patients should make all ADHD treatment decisions in consultation and coordination with a licensed medical provider.

The findings of the JAMA Psychiatry study underscore the importance of carefully weighing potential benefits and risks when making ADHD treatment decisions. “Clinicians should be vigilant in monitoring patients, particularly among those receiving higher doses, and consistently assess signs and symptoms of CVD throughout the course of treatment,” the researchers wrote.

Sources

¹Zhang, L., Li, L., Andell, P., et al. (2023) Attention-Deficit/Hyperactivity Disorder Medications and Long-Term Risk of Cardiovascular Diseases. JAMA Psychiatry. doi:10.1001/jamapsychiatry.2023.4294

²Jensen, P.S., Hinshaw, S.P., Swanson, J.M., Greenhill, L.L., et al. (2001) Findings from the NIMH Multimodal Treatment Study of ADHD (MTA): Implications and Applications for Primary Care Providers. J Dev Behav Pediatr. doi: 10.1097/00004703-200102000-00008

³Zhang, L., Yao, H., Li, L., et al. (2022). Risk of Cardiovascular Diseases Associated with Medications Used in Attention-Deficit/Hyperactivity Disorder: A Systematic Review and Meta-Analysis. JAMA Netw Open. doi: 10.1001/jamanetworkopen.2022.43597

• Car accidents and moving violations
• Unwanted teen pregnancy and STIs
• Substance and alcohol use disorder
• Self-harm

A slew of recent research, however, has revealed that treating diagnosed ADHD may dramatically reduce the incidence of these negative outcomes in teens. In response to this data, many clinicians are urging teens and their parents to see the benefits of medication, not just for school, but for the life that presents itself through the day (and night).

The Developing Teenage Brain

Adolescents navigate thrilling new freedoms and significant new responsibilities at a time when their prefrontal cortex, responsible for decision making and risk analysis, is still developing (a process not completed until the late 20s). Brain-imaging studies show that this maturation process takes, on average, two years longer for teens with ADHD than it does for their neurotypical peers.

“In the teenage years, the prefrontal cortex matures later than the limbic system, putting teens at risk of having emotional decision-making, addictive decision-making, and impulsive decision-making that isn’t modulated by the prefrontal cortex. This affects the ability to pause and think through a thought before it becomes an emotion or an action,” explained Greg Mattingly, M.D., in the APSARD webinar “ADHD Treatment in the Primary Care Setting: The Teenage Years.” “Individuals with ADHD have an even further maturation gap, so concentration, impulse control, working memory — they get there, but it takes about two more years. We want to be mindful of this as we talk to our teenagers. How does this impact things like substance use, and sexual behavior?”

[Read: ADHD Symptoms in Teens – Your Guide to Warning Signs & Treatments]

Understanding that your teen has an increased likelihood of engaging in risky behaviors may provoke anxiety, but Mattingly suggested that awareness helps parents make more informed and collaborative decisions about their teens’ treatment plans. While ADHD medication is often considered a tool for improving school performance, studies show its benefits extend to protecting against everything from car accidents to substance abuse. Said Mattingly: “This data demonstrates the importance of holistic treatment, treatment that lasts as long as possible, into the evening.”

ADHD Medication Lowers Serious Risks

1. Car Accidents and Moving Violations

Getting a driver’s license is a rite of passage for teens, and with it comes the exhilarating promise of freedom. But new drivers with ADHD face special risks that need to be taken into consideration. “From traffic citations to serious crashes, drivers with ADHD are more likely than drivers without ADHD to experience adverse driving outcomes,”¹ explained Joseph Biederman, M.D., in his 2022 ADDitude article “Driving with ADHD: Pumping the Brakes on Vehicle Safety Risks.”

“Driving is a multidimensional activity involving many cognitive abilities and executive functions,” Biederman said. “The underlying impairments inherent to ADHD are thought to interfere with driving.” Impulsivity can lead to speeding, passing, weaving through traffic, as well as driving under the influence of alcohol and other substances. Inattention can make sustained focus difficult, especially in low-stimulus, monotonous environments. The result?  Moving violations, license suspensions, and car crashes.

The incidence of risky driving and car accidents is especially high among teenage drivers with ADHD. According to a study published in Pediatrics,² over the first four years of having a license, drivers with ADHD are:

• Twice as likely as their non-ADHD peers to drive while intoxicated
• 37% more likely to get into a crash
• 150% more likely to receive an alcohol, drug, or moving violation

While these are sobering statistics, new research offers hope about the potential of ADHD medication to significantly reduce driving risks.

[Free Driving Contract Template: Safety Rules for Teen Drivers with ADHD]

In a study conducted by Biederman with other researchers at Massachusetts General Hospital (MGH) and Massachusetts Institute of Technology (MIT), teens with ADHD were separated into two groups, then tasked with driving through a virtual roadway featuring surprise events, including oncoming traffic.³ The teens in the first group received stimulant medication (lisdexamfetamine: brand name Vyvanse) while the teens in the second group did not. Compared with the group of non-medicated ADHD teens, the medicated group:

• Were 67% less likely to have a collision during these events
• Reacted 9.1% faster to these events

While a 9% faster reaction time may not seem like much, Biederman explained that for drivers moving at 65 mph, that translates to a car traveling an additional eleven feet before reacting to a sudden obstacle. Eleven feet can have serious — even deadly — consequences.

“For families that stop ADHD treatment on weekends and during ‘downtime,’ I emphasize the importance of driving only while medication is active,” Biederman said. “A short-acting medication taken about half an hour before hitting the road may just be life-saving.”

2. Unwanted Teen Pregnancy and STIs

When you combine impulsivity with surging hormones and burgeoning sexuality, the result is often risky sexual behavior. Of the many studies that have explored the ramifications of this behavior in teenagers with ADHD, one of the most comprehensive is the Milwaukee Longitudinal Study by Russell Barkley, Ph.D.

Barkley and his fellow researchers followed a large group of children with combined type ADHD, as well as a control group of neurotypical children, through childhood into young adulthood, assessing them at four points in development.⁴ They found that, compared with non-ADHD peers, teens with ADHD had the following:

• More sexual partners (19 vs. 7)
• More teen pregnancies (38% vs. 4%)
• More sexually transmitted diseases (17% vs. 4%)

It’s a data set, Mattingly said, that builds a compelling case for making sure teens are medicated for ADHD beyond school hours. “It’s important to consider as you’re thinking about what days of the week you’d like your child to take their medicine,” Mattingly explained.

ADHD medication can prove indispensable at protecting against these unwelcome outcomes by decreasing levels of impulsivity — both physical and mental. In “How Does ADHD Medication Work?” Laurie Dupar, PMHNP, RN, PCC, explained that, when ADHD medication is working effectively, “You’ll notice that your thoughts are less impulsive. Instead of jumping from one thought to the next, you’ll follow a train of thought more effectively.” Medication can help teens create a space between the urge to do something and actually doing it. This space gives their good judgment more of a fighting chance.

3. Substance Use Disorder

Stimulants are classified as controlled substances because of their risk for abuse, leading many parents to worry that taking these medications may lead to addiction. So it may come as a surprise to learn that the risk of developing a substance use disorder drops dramatically when a person with ADHD receives treatment.

While people with childhood ADHD are almost twice as likely to develop a substance use disorder as people without childhood ADHD, those who receive treatment are 60% less likely to have a substance use disorder, compared with people whose ADHD is left untreated.

The research is clear: receiving ADHD treatment protects teens against substance abuse.

“Considerable evidence suggests that children taking ADHD medication commonly experience improvements to academic and social functioning, which translates to improved self-esteem, and lower rates of self-medication with drugs or alcohol,” said Timothy Wilens, M.D., in the ADDitude article “ADHD Medication Diminishes Risk of Substance Abuse.”

The protective effect of ADHD medication against drug and alcohol use is evidenced in the research that shows medication can help those who abuse substances maintain sobriety. “Treating ADHD with medication tripled people’s rates of staying in substance use treatment,” Mattingly said. “When we treat ADHD. we find dramatic improvement, not just in ADHD symptoms, but in staying in substance use treatment and maintaining sobriety.”⁵

4. Self-Harm

One of the most frightening behaviors associated with ADHD in adolescence is the increased likelihood of self-harm. This correlation was a focus of investigation for UCSF psychologist Stephen Hinshaw, Ph.D., who wrote about his research in the ADDitude article “ADHD and Self-Harm: How to Help the Girls Who Suffer Most.” “Our findings of extremely high rates of cutting and other forms of self-injury, along with suicide attempts, show us that the long-term consequences of ADHD in females can be profound,” Hinshaw said.

Specifically, Hinshaw’s study uncovered the following:

• More than 50% of teen girls with a history of inattention and impulsivity engaged in moderate to severe self-harm vs. 19% of neurotypical peers
• More than 20% of teen girls with ADHD attempted suicide vs. 6% of teen girls without ADHD⁶

A new study published in Child and Adolescent Mental Health confirmed that ADHD increased likelihood for self-harm and recommend screening all self-injuring teens for ADHD.⁷ The connection between ADHD and self-harm is not fully known, but it is thought to be related to both impulsivity and emotional dysregulation, as well as the high incidence of comorbid conditions such as depression and anxiety.

“Impulsivity, a key trait of ADHD, is frequently implicated as a possible risk factor for self-harm (in conjunction with other risk factors such as affective disorders),” wrote the authors of the study. “It has been shown that young people who self-harm struggle to express emotions verbally: it is plausible that emotional dysregulation would lead to expression of strong feelings through impulsive acts of self-harm.”

Medication can play an important role in reducing emotional dysregulation and impulsivity in people with ADHD,⁸ leading the authors of the study to conclude that “this may suggest a potential pharmacological therapy for self-harm.”

Teens, Drunk Driving & Unplanned Pregnancies: Next Steps

• Read: ADHD and Addiction – The Truth About Substance Abuse
• Watch: The Teen Years with ADHD – a Practical, Proactive Parent’s Guide
• Read: How Can I Help a Teen Patient with ADHD Who Needs But Resists Medication?
• Watch: ADHD and Substance Use Disorders – How to Recognize and Manage Addiction

Joseph Biederman, M.D., co-founder of APSARD, groundbreaking ADHD researcher, psychiatrist, and mentor to many in the field, passed away in January of 2023.

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Sources

¹ Curry, A. E., Metzger, K. B., Pfeiffer, M. R., Elliott, M. R., Winston, F. K., & Power, T. J. (2017). Motor Vehicle Crash Risk Among Adolescents and Young Adults With Attention-Deficit/Hyperactivity Disorder. JAMA Pediatrics, 171(8), 756–763. https://doi.org/10.1001/jamapediatrics.2017.0910.

² Curry, A. E., Yerys, B. E., Metzger, K. B., Carey, M. E., & Power, T. J. (2019). Traffic Crashes, Violations, and Suspensions Among Young Drivers With ADHD. Pediatrics, 143(6), e20182305. https://doi.org/10.1542/peds.2018-2305

³ Biederman, J., Fried, R., Hammerness, P., Surman, C., Mehler, B., Petty, C. R., Faraone, S. V., Miller, C., Bourgeois, M., Meller, B., Godfrey, K. M., & Reimer, B. (2012). The effects of lisdexamfetamine dimesylate on the driving performance of young adults with ADHD: a randomized, double-blind, placebo-controlled study using a validated driving simulator paradigm. Journal of Psychiatric Research, 46(4), 484–491. https://doi.org/10.1016/j.jpsychires.2012.01.007

⁴ Barkley, R. Gordon, M. Research on Comorbidity, Adaptive Functioning, and Cognitive Impairments in Adults with ADHD: Implications for a Clinical Practice, In: Goldstein, S. Ellison, A.T. (eds) Clinician’s Guide to Adult ADHD, San Diego, CA: Academic Press; 2002; 43-69. https://doi.org/10.1016/B978-012287049-1/50005-0.

⁵ Kast KA, Rao V, Wilens TE. Pharmacotherapy for Attention-Deficit/Hyperactivity Disorder and Retention in Outpatient Substance Use Disorder Treatment: A Retrospective Cohort Study. J Clin Psychiatry. 2021 Feb 23;82(2):20m13598. doi: 10.4088/JCP.20m13598. PMID: 33988929; PMCID: PMC8351325.

⁶ Hinshaw, S. P., Owens, E. B., Zalecki, C., Huggins, S. P., Montenegro-Nevado, A. J., Schrodek, E., & Swanson, E. N. (2012). Prospective follow-up of girls with attention-deficit/hyperactivity disorder into early adulthood: Continuing impairment includes elevated risk for suicide attempts and self-injury. Journal of Consulting and Clinical Psychology, 80(6), 1041–1051. https://doi.org/10.1037/a0029451

⁷ Ward, J.H. and Curran, S. (2021), Self-harm as the first presentation of attention deficit hyperactivity disorder in adolescents. Child Adolesc Ment Health, 26: 303-309. https://doi.org/10.1111/camh.12471

⁸ Kutlu A, Akyol Ardic U, Ercan ES. Effect of Methylphenidate on Emotional Dysregulation in Children With Attention-Deficit/Hyperactivity Disorder + Oppositional Defiant Disorder/Conduct Disorder. J Clin Psychopharmacol. 2017 Apr;37(2):220-225. doi: 10.1097/JCP.0000000000000668.