Truly random drug testing: ADHD patients face uneven urine screens and, sometimes, stigma

Some adults who take prescription medication for attention-deficit/hyperactivity disorder are required to have their urine tested for drugs several times a year. Others never are tested.

Such screenings are designed to check if ADHD patients are safely taking their pills, such as Adderall, and not selling them, taking too many, or using other drugs.

Several doctors told KHN there are varying opinions and no national standards on the role of urine testing to monitor adults who take ADHD medication. So patients face dramatically different requirements, depending on their clinics' and health insurers' policies.

"There really isn't much literature to guide you on how to do this," said Dr. Margaret Chaplin, a Connecticut psychiatrist who treats patients with ADHD, mental illnesses, or substance use disorders.

Chaplin first noticed the lack of testing standards about eight years ago, when she and colleagues proposed ways to prevent stimulant misuse in adult ADHD patients.

Her team recommended urine tests only if patients exhibit "red-flag behavior," such as appearing intoxicated, repeatedly reporting lost prescriptions, or frequently switching doctors. Some doctors and clinics make testing decisions on a patient-by-patient basis taking into account those red flags or patient history. Others apply universal policies, which may be aimed at preventing discrimination. Some insurance companies and state Medicaid systems also have testing requirements.

ADHD stimulants, opioid pain medications, and some other drugs are classified as controlled substances, which are tightly regulated because they can be addictive or misused.

ADHD patients subjected to frequent drug screens say the tests can be time-consuming and expensive. Some feel stigmatized.

A.C. Shilton felt relieved when she was diagnosed with ADHD in her mid-30s. The farmer and freelance journalist from rural Tennessee said the diagnosis explained why she felt so disorganized and forgetful, and as if her brain were a motor running all day. Shilton said her medication slows that motor down.

The 38-year-old Jamestown resident said her first doctor ordered urine tests once a year. That doctor eventually closed his practice, and Shilton said her next physician made her take a test at nearly every visit.

"You go in to get the standard of care, which is this medicine, and you're kind of treated like you're a bad person again; there's some shame associated with that," Shilton said.

She was also upset after learning office staffers were incorrect when they told her that urine testing was required by law — something that other ADHD patients posting on social media forums said had happened to them too.

Shilton said few doctors treat adult ADHD patients in her rural community. She now drives more than an hour to a different clinic, which doesn't require her to take as many drug tests.

Travis Gordon, 47, of Charlotte, North Carolina, has gone to the same ADHD clinic for more than 10 years. Gordon said he wasn't drug-tested in the first few years. Then, for several years, he had to give a urine sample every three months. During much of the covid-19 pandemic, he wasn't tested. Now, he's screened every six months.

"We shouldn’t have to feel like street criminals to get drugs that are needed for our daily success," Gordon said.

Gordon said it would make sense for doctors to order tests more frequently as they get to know new patients. But he said he doesn't understand why such testing should continue for people like him, established patients who properly take their medication.

Traci Camper, 50, of northeastern Tennessee, said she has "never even tried a cigarette," much less used illicit drugs, but her doctor has required urine tests every three months for more than 10 years. Camper said the process can be inconvenient but she's ultimately OK with the tests, especially since she lives in an area with high rates of drug abuse.

The clinics that Shilton, Gordon, and Camper went to did not respond to KHN's requests for interviews about their testing policies.

Adults are diagnosed with ADHD if they have multiple, frequent symptoms so severe they interfere with work, relationships, or other aspects of life. Treatments include therapy and medication, most often stimulants.

ADHD patients have been affected by the response to the opioid crisis, which has led to more scrutiny for all controlled medications. Some have reported trouble filling their prescriptions as drug distribution companies limit sales to certain pharmacies. Some patients, especially rural ones, could face obstacles if the federal government reverts to pre-pandemic rules that require at least one in-person appointment to receive controlled drugs via telehealth.

Chaplin said doctors who treat ADHD may feel the need to be extra vigilant with drug testing because of this increased scrutiny, or due to the risk of misuse.

An estimated 3.7 million Americans 12 or older misused prescription stimulants in 2021, and 1.5 million had a prescription stimulant use disorder, according to the National Survey on Drug Use and Health. Americans are more likely to misuse or be addicted to prescription opioids, sedatives, and tranquilizers, the agency said.

Adults with ADHD are more likely to have a substance use disorder than those without the condition, according to the Substance Abuse and Mental Health Services Administration.

Although there aren't formal standards, several health care organizations and professionals have made recommendations to prevent and detect adult ADHD stimulant misuse. Suggestions include requiring patients to sign prescription-agreement contracts and regularly checking databases that show all controlled medications each patient is buying.

Chaplin said there's little research into how effective any method is at preventing medication misuse.

A recent survey found that 42% of family physicians and 21% of college health professionals who treat adult ADHD require their patients to submit random urine drug screens.

Gordon, Camper, and some ADHD patients on social media forums said their drug screens have come at predictable intervals, instead of random ones.

Dr. Sidarth Wakhlu, a psychiatrist who specializes in treating substance use disorders at the University of Texas Southwestern Medical Center in Dallas, said some of his patients also have ADHD. He suggests drug-testing most ADHD patients once or twice a year. For "someone who has no addiction history, has no red flags, every three months is an overkill," he said.

The cost of drug testing is as variable as the frequency.

For example, Dr. Michael Fingerhood at Johns Hopkins University uses urine tests that cost as little as $60 before insurance. Fingerhood makes testing decisions case by case for patients who take controlled substances to treat ADHD, pain, or opioid addiction.

Gordon used to pay $110 for each of his tests when he had insurance his doctor did not accept. Shilton's insurance was billed $545 for a test. Shilton said she complained to a nurse who said, in the future, she could use a less expensive test.

Shilton said she replied, "Well, why aren't we doing that to begin with? Why are we doing this extremely fancy drug testing?"

Wakhlu said the more expensive urine tests can identify specific types and quantities of drugs. Such tests are usually used to confirm the results of initial, less pricey tests, according to the Centers for Disease Control and Prevention.

Wakhlu said that when test results show a patient might be misusing stimulants, doctors should initiate a non-accusatory conversation to discuss the results and, if needed, offer help. He also said it's important to emphasize safety, such as how taking too much ADHD medication or combining it with other stimulants, such as methamphetamine, can be dangerous.