ADHD Medication Shortage Comments Top Government Inquiry
Of the more than 5,600 public comments submitted to the Federal Trade Commission and U.S. Department of Health and Human Services, 62% have mentioned ADHD. The Request for Information remains open until May 30.
April 19, 2024
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.
