Amid a nationwide ADHD drug shortage, patients are paying significantly more for drugs that help them focus at school, work and home.
The shortage has put financial pressure on families and forced them to look for alternatives. Often the only options they can find are expensive brand name drugs.
The upward trend is reflected in prices paid by retail pharmacies for several popular ADHD drugs, which according to a USA TODAY analysis, have outpaced inflation and in some cases doubled or tripled since Adderall ran into shortages starting in October 2022.
A Delaware mother diagnosed with ADHD, whose husband and 17-year-old daughter also have attention deficit/hyperactivity disorder, told USA TODAY that when the Adderall shortage was announced, their doctor switched her daughter to the only available option. Vyvanse.
As a result, the amount they pay each month after insuring his medication skyrocketed from less than $20 to $300. Medicines are too expensive for more than one person in the household, and she said she prioritizes her daughter’s health and education.
With medication and accommodation at school, my daughter is a straight A student. Without medication, he will fail, said the mother, who asked to be identified only by her first name, Sam, because her husband does not want his employer to know about his diagnosis. That’s a stark difference.
Many of the medications used to treat ADHD have increased in cost, which is reflected in the national average drug costs. Since mid-December, the amount pharmacies pay for certain doses of both brand-name and generic Adderall rose faster than inflation. The average price paid by small and medium-sized independent and chain pharmacies for some versions of methylphenidate sold under the brand names Ritalin and Concerta has nearly doubled since last year. The average price of dexmethylphenidate, sold under the brand name Focalin, more than doubled.
Sam was without medication for weeks after his remaining dose of Focalin ran out, leading to challenges such as forgetting to eat, difficulty concentrating at work and difficulty keeping up with household chores. Just as a broken leg moves without crutches, everyday tasks are more difficult and take more energy. Unlike someone wearing a cast, many ADHD symptoms are internal and invisible to others.
You can’t really compare it, but if there was a shortage of cancer drugs, there would be a lot more fuss than a shortage of ADHD drugs because people don’t seem to understand that this is a disability,” Sam said. It’s very debilitating because it has quite an impact on your quality of life.
At least 6 million children ages 3 to 17 have been diagnosed with ADHD in the United States, according to the Centers for Disease Control and Prevention. Although the picture is less clear for those 18 and older, according to some studies ADHD affects 11 million American adults.
The Sams family is one of many whose lives have been disrupted by a shortage that the Food and Drug Administration says began last year due to manufacturing delays by Adderall companies, including Teva.
Then, in a domino effect, other common ADHD medications declined as patients sought alternatives. Increased demand for ADHD drugs and strict regulations for those drugs created a confluence of factors, said Antonio Ciaccia, CEO of 46brooklyn Research, an Ohio-based nonprofit drug pricing research firm.
Search our database to track changes in pharmacy prices for common ADHD medications.
‘Extra ADHD tax‘
Drug deprivation is a source of increased anxiety and stress for those with ADHD. When you have to go without it or use imperfect substitutes, your performance in the classroom or workplace will suffer. Routines and relationships suffer.
People downplay ADHD and make jokes about it, but it’s no laughing matter, said Dr. Edward Hallowell, a child and adult psychiatrist and leading expert in the field who lives with the condition himself. Traffic accidents are much more common in people with ADHD, and not having your medication makes it even more dangerous.
Finding a pharmacy that carries medications during a shortage is like panning for gold, Hallowell said. Other patients have compared their experience to a frustrating and endless drug discovery game.
In addition to spending more on medication, Sam and his family have had to travel long distances and pay extra for gas to get to pharmacies that stock them.
We shouldn’t have to drive an hour back and forth for 30 tablets, he said. It’s almost an additional ADHD tax.
The process often starts with calling the pharmacy and asking what medicines are available. However, if they are not regular customers, it can be prevented by efforts to prevent the illegal distribution or abuse of drugs.
Some pharmacies don’t disclose what controlled substances they have over the phone as a safety precaution, said Michael Ganio, senior director of pharmacy practice and quality for the American Society of Health-System Pharmacists.
If the patient is successful and finds something in stock, it becomes a race against the clock to negotiate with their doctor and send the prescription to the right pharmacy before the stock runs out.
Half-strength medication may be better than none at all, but patients compare it to wearing glasses of half the strength you need. Some take what they can get, even if they don’t respond well to a particular drug or dose. Others can’t take alternatives because they increase anxiety, raise heart rate, affect sleep patterns or simply don’t work, according to the Cleveland Clinic.
ADHD is caused by low levels of dopamine and norepinephrine, neurotransmitters that play an important role in people’s motivation and ability to complete tasks, according to a National Institutes of Health study. Stimulant drugs, also used to treat narcolepsy and binge eating disorder, increase the amount of these chemicals in the brain, which can help people with ADHD direct their attention to organizing and completing tasks.
Without Vyvanse, which Sams’ daughter now takes in place of Adderall, she has a hard time managing and completing homework. A task that would normally take an hour or two takes six, Sam said.
Drug price data shows that Vyvanse has been the more expensive option for years. The original manufacturer’s patent expired in August, and the FDA recently approved generic versions of the brand-name drug. Once a generic drug is approved, it can take anywhere from a few weeks to a year for pharmacies to receive their first shipments from manufacturers, Ciaccia said.
The FDA is currently reporting generic Vyvanse shortages at several companies, so it’s unclear how soon patients will be able to find cheaper versions of the drug.
What caused the lack of ADHD medications?
Doctors are diagnosing more ADHD and writing more prescriptions for drugs to treat it. This, together with their production restrictions, led to a shortage of these drugs.
The recent rise of telehealth and virtual prescriptions during the COVID-19 pandemic is one explanation for the increase in demand for drugs, Ganio said, as patients were able to more easily access health care providers. Practitioners were able to diagnose ADHD and prescribe controlled substances online, which previously required an in-person visit. This flexibility has been extended until 31 December 2024.
Some people were diagnosed after pandemic shutdowns forced them to work from home or their children to attend school virtually. For some, the loss of a job or school structure worsened symptoms. Often, when children are diagnosed, so are their parents.
In emailed responses to USA TODAY, Adderall’s two largest suppliers blamed the shortages on increased demand, but experts say other factors, such as federal restrictions on the production of controlled substances, played a role.
According to the Drug Enforcement Administration, stimulants such as amphetamine in Adderall or methylphenidate in Ritalin are classified as controlled substances because they have a high potential for abuse, which can lead to severe mental or physical dependence. The purpose of this classification is to prevent misuse or abuse.
As such, the agency oversees everything from a manufacturer’s production volume to how much doctors and pharmacists can prescribe and dispense. Regulatory constraints on the drug supply chain, including industry-wide restrictions on the production of ADHD drugs, make quickly addressing the shortage challenging.
The DEA and FDA have acknowledged the role of record prescriptions for stimulant medications in the ADHD medication shortage. According to a joint letter published in August, the total dosage of stimulants in the United States increased by 45 percent from 2012 to 2021.
However, manufacturers and the DEA have been pointing the finger as to who is responsible for the shortage, Ganio said. The agency said manufacturers are sitting on unused ingredients, while manufacturers say they don’t have enough, and the DEA needs to loosen quota restrictions.
In 2022, manufacturers did not produce the full amount those limits allowed them to take, resulting in a shortfall of a billion doses that could have been made but were not manufactured or shipped, and 2023 data has shown a similar trend, the DEA wrote. in a letter early last month.
The three largest generic drug makers, Teva, Sandoz and Sun Pharma, told USA TODAY that they have produced as much as the DEA has allowed and have actually requested higher quotas to meet demand.
In an emailed statement to USA TODAY, Sun Pharma told USA TODAY that the DEA denied its request for permission to make more ADHD medication through 2023. The company said it has repeated its request for next year and hopes to receive approval.
What is being done to end the ADHD medication shortage?
The DEA said it has adjusted its quota rules and coordinated with manufacturers to produce ADHD stimulants.
The DEA has been in contact with affected manufacturers, and 17 of the 18 manufacturers have informed us that they are using their quota amounts and increasing production of the stimulant drugs, the agency wrote in early November.
In a written statement, Sandoz said the DEA has granted companies requests for a higher quota to fulfill customer orders.
While it’s too early to know when the shortage will end, Ganio said he promises to see the DEA work with manufacturers and adjust its quota allocation process.
“Manufacturing cannot be started overnight, so hopefully manufacturers can increase production and within a few months we will see more supply on the shelves,” he said.
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