ADHD medication shortage forces Long Island parents to ration, scramble

When Beth Rella’s 7-year-old son takes his medication for ADHD, she knows he will have a good day at school.

The second grader has worked hard to stay in an integrated classroom where children with special needs play and learn with others instead of being separated.

But Rella, of Miller Place, knows that missing just one morning of Ritalin can make a difference — which is why the recent shortage of many medications for attention deficit/hyperactivity disorder has her terrified.

"He can't sit still or look someone in the eye without that medication,” she said.

The shortage of medications such as Ritalin, Adderall and other stimulants used to treat ADHD in children and adults has left people frustrated and angry across the United States.

Rella is not giving her son his medication on weekends, to make sure there is enough for vital school days. Just a little more than a week ago, Rella had to reach out to 19 pharmacies on Long Island in a desperate search to fill her son’s prescription.

When Rella finally found a place where she could get a refill, she wept with relief. But she only has enough for 49 days — instead of the usual 90 — and then the hunt will begin again.

Experts said the scarcity is caused by a combination of supply chain issues, as well as more people needing prescriptions during the COVID-19 pandemic, possibly due to greater awareness of mental health concerns.

And the increased demand has caused its own problems. For example, when people can’t find Ritalin or Adderall, they and their doctors search for similar medications that might be available. The people who have had prescriptions for those replacement medications are then left without a supply. Insurance also might not pay for the substitute medications.

 Additionally, because these drugs are controlled substances, pharmacists may not be able to provide information over the phone. And the U.S. Food and Drug Administration’s drug shortage website does not list medications by brand name.

'Scavenger hunt'

Dr. Andrew Adesman, a developmental pediatrician specializing in the evaluation and treatment of ADHD, said while there have been shortages of these medications in the past, this is the worst he has seen in terms of how widespread it is and how long it has lasted. 

“You have the FDA, which does not provide information to patients in a meaningful way, and then you have many pharmacies unwilling to disclose information about medication availability over the phone, which then sends parents on a scavenger hunt of laboriously trekking all over the Island trying to find medicine that pharmacies may or may not have,” said Adesman, chief of the Division of Developmental & Behavioral Pediatrics at Cohen Children’s Medical Center in Glen Oaks. “But at least with a scavenger hunt there is an end. There is no clear end in sight here … hopefully some of this will resolve in March and April.”

In October, the FDA declared a shortage of Adderall. In more recent statements, the agency said while some manufacturers are having supply issues, others have the medication available.

The FDA also said the shortage is now “demand-driven” instead of being caused by manufacturing delays.

“The public should rest assured the FDA is working closely with numerous manufacturers and others in the supply chain to understand, mitigate and prevent or reduce the impact of intermittent or reduced availability of certain products,” the agency said in a statement to Newsday. “The FDA understands that manufacturers expect availability to continue to increase in the near future.”

Teva Pharmaceuticals, the largest manufacturer of Adderall, said in a statement it is continuing to manufacture the products while experiencing "intermittent delays."

    Novartis Pharmaceuticals, which manufactures several formulations of Ritalin, said in a statement it is only experiencing delays in the supply of 10 mg and 20 mg immediate release tablets.

“We are making every effort to minimize this temporary supply interruption,” the company said.

Social ramifications

Rella said she was reluctant to stop giving her son medication on the weekends in order to make the supply last longer for school days, but felt she had no choice. 

“I’m really not comfortable with that, I think he should stay on it,” she said. “But we want him in school, that’s the most important thing.”

Dr. Scott Krakower, a child and adolescent psychiatrist at Zucker Hillside Hospital in Glen Oaks, said “there is a shortage of everything” and families he works with can’t find medications anywhere on Long Island.
He said not taking ADHD medication can directly impact how children function in school, at home and their general well-being.
“Many times when you treat ADHD symptoms, a child’s mood gets better, their anxiety gets better,” said Krakower. “There are also social ramifications because these kids can have more difficulty in social situations. It can even have an impact on their coordination.”
Changing ADHD medications because the one that has been prescribed is not available can be tricky and sometimes problematic, said Dr. Aditya Pawar, a child and adolescent psychiatrist at the Kennedy Krieger Institute in Baltimore.
“Not being able to continue an effective stimulant medication can cause significant difficulties,” said Pawar. “Changing them frequently could make things worse because they may not work.”
Pawar, who is also an assistant professor in the Department of Psychiatry at the Johns Hopkins University School of Medicine, often works with families for weeks on medications before determining which works best for their child.
“We reach that decision after a lot of clinical work,” he said. “Choosing whatever stimulant is available is not the best care.”
Because these medications are controlled substances, doctors have to work closely with patients and pharmacists when changing prescriptions.

Alternatives debated

Nidhin Mohan, supervising pharmacist at New Island Pharmacy in Deer Park, said he helps customers and their doctors find alternatives.
“There is a massive shortage of ADHD drugs across the board,” he said. “Out of a fistful of ADHD drugs that are available on the market, probably like 10 percent are still available.”
Mohan said while the immediate release formulations of Adderall have been wiped out, the extended releases for both that medication and Ritalin are trickling in.
“We have had to try three, four drugs before the patients finally liked one and then the mother asked if I would have this medication over the next couple of months and I had to say ‘Your guess is as good as mine,’ “ he said.
Adesman, the developmental pediatrician, said patients and their families should work with their doctors on alternative medications that might be more readily available.
He helped put together a comprehensive listing at ADHDmedicationguide.com as a resource for patients and their clinicians.
“I don’t want to suggest that all these medicines are the same but oftentimes kids will do reasonably well on more than one formulation,” Adesman said. “People should speak to their doctors and keep an open mind.”

Rella said she is frustrated that even with the state and federal government emphasizing resources for mental health during the pandemic, medications that help children thrive are not readily available.

It took more than a year for her to find a medication dose and combination that worked for her son. But if the choice is between keeping him home without medication or sending him to school on a new medication, she will choose the latter.

In the meantime, she hopes the shortage will ease by the time her son’s current supply runs out.

“How is it possible in this day and age we can’t fix this?” she said.

With Joie Tyrrell

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.