Opinion | The ADHD drug shortage is a window into our broken health care system

Emily Muench is caught in a bind that millions of Americans will recognize.

A 22-year-old senior at Ohio’s Baldwin Wallace University, she’s taking 18 credit hours of classes, works two jobs, sings in a band and leads a mental health peer support group on campus. In conversations, she seems smart, productive and self-aware.

She didn’t always feel this way. Muench used to spend a lot of time staring at her computer screen filled with dread. She struggled to organize her thoughts and didn’t finish things she started. Rumination fueled depression and anxiety, and overstimulation made her heart race.

“I spent so much time being angry at myself for not being able to do what I considered to be basic tasks,” Muench said. “I thought something was wrong with me and that if I tried harder, maybe it would get better.”

Relief came when she was diagnosed with an inattentive subtype of ADHD last year and put on a low dose of a stimulant called Focalin. The drug treats deficient levels of dopamine and norepinephrine, chemical messengers in the brain. And it has changed her life. “It’s less of a crutch and more of a necessity,” she told me. “I’m pursuing my MBA now, and there’s no way I’d be able to do that without medicine.”

But Muench is facing unexpected challenges that are putting her progress at risk.

She had been doing monthly telehealth visits with her psychiatrist, who lives 45 minutes away, to keep her prescription current. Telemedicine — talking to a doctor by video call — has enabled patients such as Muench to get their refills without making long commutes and taking time away from work or school. Federal officials loosened telemedicine rules during the pandemic, making health care more accessible for millions.

The Biden administration announced in late February that it planned to let Americans keep many of the telehealth conveniences they came to enjoy during the pandemic, such as doing therapy or getting antibiotics prescribed online. To make it harder to get potentially addictive drugs, though, it has proposed returning to the pre-pandemic requirement that patients have at least one in-person evaluation before they can get controlled substances via telemedicine. This would tighten access to stimulants including Focalin, Adderall and Ritalin, as well as opioids such as Vicodin and the opioid addiction treatment buprenorphine.

This is wise in a perfect world but potentially cruel in the United States. Even before the pandemic, 130 million Americans — a third of the population — lived in areas with a shortage of mental health providers, and more than half of U.S. counties didn’t have a single psychiatrist. Getting an appointment in remote locations could mean waiting months, to say nothing of the travel time.

The proposal inspired panicked posts on ADHD-related social media channels and concern from patient advocacy groups. There is genuine cause for alarm, but new prescribing rules are only a small part of it.

Muench has been too busy with school to provide income statements to get Medicaid. She is uninsured, and may have to look for a new doctor who is both affordable and close enough to see in person. Before finding an online pharmacy to fill her prescription out of pocket, she missed two weeks of Focalin and felt the effects. At a moment when the drugs she takes are already in alarmingly short supply, she worries life is going to get even more difficult.

“It’s so hard to make the first step to even admit you need help, so when there are barriers to getting treatment, it only discourages people more,” she said.

ADHD is an illness, not a lifestyle

The story of ADHD in America today is a window into how our fractured health-care delivery system — and hyper-connected culture — can make people feel simultaneously better and worse. It is a dilemma for government officials tasked with balancing public health with public safety. It is also a test of whether we can meet the needs of Americans with mental health challenges and keep a difficult situation from becoming more challenging. The prospect is not great.

Federal and state governments are investing hundreds of millions of dollars to address America’s mental health crisis, which is enmeshed with our opioid and suicide crises. The proposed telemedicine rules threaten to create new problems in an effort to fix old ones.

If finalized, they “would reinforce our country’s historic discrimination against individuals with mental health and substance use disorders and undermine the Administration’s otherwise robust and system-changing efforts that are needed to address our nation’s mental health and addiction crises,” wrote the Legal Action Center’s Ellen Weber and Kennedy Forum’s David Lloyd in a letter signed by 67 organizations focused on mental health and substance use.

An estimated 4.4 percent of adults — 14.6 million — have an ADHD diagnosis in the United States, numbers that have grown steadily over the decades as doctors and patients better understand what it is. That number likely will rise as pandemic-era data rolls in. ADHD is aneurodevelopmental disorder that can drown whole families. In childhood, the brain of someone with ADHD starts out different than those without it, according to psychology professor Susan Whitfield-Gabrieli, director of the Northeastern University Biomedical Imaging Center. Although symptoms vary from one patient to the next, it often affects one’s ability to regulate attention, behavior and emotions.

Muench says her emotions can at times feel like a physical weight pressing down on her body. For others, feelings can rush out as mood swings or anger, and thoughts and impulses are harder to control. People with ADHD can be highly sensitive to rejection, and studies show they have higher rates of depression and higher risk of suicidal thoughts and substance abuse. “Most people will have lifelong impacts,” said Howard Liu, chair of the University of Nebraska Medical Center’s Department of Psychiatry.

While ADHD is often hereditary, scientists are examining other risk factors, including exposure to lead as a child and brain injuries at any age. In 2014 researchers began studying adolescents in 10 Los Angeles County high schools with no symptoms of ADHD. After two years, they observed a significant association between the kids’ frequent use of digital media and the development of symptoms. More research is needed to assess whether our online habits directly cause ADHD, but one thing is clear: Our text messages and news alerts and endless scrolls can make us feel distracted, which can be stressful even without a diagnosable condition.

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And when covid-19 hit, we got even more disoriented.

Supply and demand

Many people stuck at home noticed that they or their kids became overwhelmed without structure and routine. Folks with the time and resources sought to find out why. Some went to psychiatrists. Many went online to find community, coping skills and a name for their struggles.

#adhdtiktok videos racked up 3 billion views on TikTok in the past three years. A study of the 100 most popular ones in 2021 found about half were misleading. As federal emergency measures allowed doctors to prescribe controlled medicines without an in-person visit, venture capital investments in digital mental health start-ups skyrocketed from $1 billion in 2019 to $5.1 billion in 2021. And telehealth ads flouting rules that govern drugmakers flooded social media platforms, promising rapid diagnoses, prescriptions and improved moods.

Demand for the drugs outpaced the supply, setting off a second crisis. Between 2019 and 2022, the total number of Adderall and generic-equivalent prescriptions to treat ADHD increased 27 percent from 35.5 million to 45 million, according to the IQVIA National Prescription Audit.

“This is my life right now — calling pharmacies trying to find them,” said Mai Uchida, director of the Child Depression Program at Massachusetts General Hospital. She spends hours every day searching for the stimulants she prescribes a third of her patients.

Uchida describes a process that is both a treasure hunt and a race against time: ringing pharmacy after pharmacy to find the right type and dosage of medicine, only to discover it has run out by the time her patient arrives to pick it up. Further complicating the process, she must negotiate with insurance companies to tweak the dosage on a new stimulant because that’s the only one available.

Uchida’s patients are lucky to have her as an advocate. It is now commonplace for many Americans with ADHD to spend hours a month calling a dozen or more pharmacies to find one that can fill a short, 30-day supply of Adderall. In rural areas, this can mean calling pharmacies 50 or more miles from home.

“These are people who are surviving on routine,” Uchida said. “Suddenly another wrench is thrown in, and it is really a burden for people who are already struggling with their neuro-developmental diseases.”

At the height of the pandemic, global supply chain problems added to the drug shortage. Even now, manufacturers can’t keep up with patient demand. At least seven manufacturers are reporting low or no supplies of the amphetamine-mixed salts used to treat ADHD. They anticipate stocks will be restored between now and June, and are urging the DEA to raise manufacturing quotas to prevent another disruption. The DEA declined the appeal in December, saying levels are sufficient for 2023.

What we can do

On May 11 the covid-19 public health emergency measures will expire, and new telemedicine regulations will formalize many of the conveniences Americans first came to enjoy during the pandemic. This is the government recognizing that technology is our friend.

But for people who sought treatment for ADHD or opioid addiction for the first time online during the lockdown — or are thinking about it now — they’ll go back to needing an in-person evaluation to get medication. DEA and Health and Human Services officials say they are taking this step because the pandemic created a dynamic where some people were being pushed drugs they do not need.

This will likely lower the demand for drugs, but also make it harder for people to get, or keep, the prescriptions critical to their health. If someone has a disability or could lose their job for taking time off, they may never make the trip.

There are common-sense measures the government and insurance companies can take to ensure the people who need help get it.

Allowing doctors to virtually diagnose and prescribe treatments has been “life-changing for a lot of people and lifesaving for a few people,” said the University of Nebraska’s Liu. He wants the Biden administration to revise the proposed telemedicine rules so that providers can waive a patient’s initial in-person evaluation if it will be a barrier to care. “It is a human rights issue,” he said. “You’re taking away people’s ability to pursue their livelihood or succeed at school.”
Instead of punishing patients who legitimately need the drugs, the DEA should focus more on the bad actors — those pushing pills for profit. The regulation of ADHD medication also should be transferred from the DEA, which focuses on control, to the Food and Drug Administration, which focuses on health.
The Centers for Disease Control and Prevention should work to better educate prescribers, insurers and the public about what ADHD is and the best practices for treating it. Most people with a psychiatric disorder are going to be treated by a primary care doctor who may have little time or specialized training.
ADHD stimulants can only be refilled every 28 days, which means patients must make repeated calls for refills even when supplies are plentiful — and then have a small window before they start missing doses. The drug shortage has almost guaranteed that some patients will find themselves forced to seek drugs from the type of telehealth start-ups and online pharmacies that the DEA is concerned about.
Insurers, drugmakers and pharmacies should partner on a supply clearinghouse. Uchida at Massachusetts General Hospital said, at the very least, she’d like a better system to identify which pharmacies have supplies of the medicines, and an easier way to transfer prescriptions from one location to another.

Individuals also have a role to play so they don’t inadvertently make it harder for people already struggling.

Results from the 2021 National Survey on Drug Use and Health showed that 27 percent of people ages 12 or older said they had misused stimulants designed to treat ADHD. Parents need to help kids understand that ADHD is a brain condition, and the drugs to treat it can be harmful to those who don’t have the disorder.
If you think you have ADHD, don’t seek drugs from companies targeting you online or rely on social media for therapy. Candin Phillips, a Greenville, S.C., therapist with a popular ADHD-focused Instagram account, argues that people should rely on social media simply to gain the confidence to talk with an actual clinician. Notice whether you feel dysregulated because your actions aren’t reflecting your values, or if there’s something deeper disrupting your emotions and behavior.
If you or someone you know has ADHD, recognize that every brain and body is different, so treatments will be, too. Some can cope with time management and focus exercises. Others will only get relief from medication.

“Think about ADHD as if your kids or you had diabetes,” Phillips said. “You’re not going to deny yourself the medicine for diabetes because that could be deadly.”

Muench, for her part, is preparing for graduation, feeling a mix of anxiety and excitement. Trying to get her medicine refilled has added to the stress, an experience she’s sharing with the Active Minds mental health group she leads on campus.

“Even on days where I’m really struggling, I know that I can go and be with people who know what I’m going through,” she said.

This makes tackling the barriers to mental health more of a team effort — support we could all use.

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