Nina Shand was n’t keep quiet.
She had taken day sleeps since she was a student to support her “work hard, play tight ” approach, but when she was in her mid-20s the lethargy became more intense.
Menial system tasks put her to rest, and a 20-minute travel across her area, St. Petersburg, Florida, brought on a tiredness so extreme that her eyelids may jump, forcing her to take over. When she no more felt secure behind the wheel, she realized something was definitely wrong.
In 2021, she received a treatment: insomnia, a rare condition that causes extreme daytime sleepiness.
Her physician prescribed her Adderall, the brand-name edition of the amphetamine-powered drugs widely known for treating attention-deficit/hyperactivity problem.
It worked. For the first time in decades, Shand, now 28, felt energized. She was never more struggling with her work, attempting to trap her body into staying alive by taking naps or drinking coffee. She felt desire.
However, a nationwide Adderall lack by 2022 meant that pharmacies were unable to fulfill her prescription. Shand and many others across the nation were being turned aside, left to piece together a novel, frequently less effective, therapy plan with doctors frantically addressing their needs.
More than a year after, the deficit continues. In October, Democrats in the U. S. House of Representatives implored the FDA and the Drug Enforcement Administration to collaborate with pharmaceutical companies to improve supply.
“We cannot allow this to be the continuing reality for Americans, ” read their letter, led by Rep. Abigail Spanberger, D-Va.
But for now, it is.
As people navigate a complex web of complicated logistics and confusion while attempting to get the medicines they need to live normally, common emotions come with each month.
The shortage has been primarily focused on the harms to people with ADHD, as has even been the House Democrats ‘ letter in the internet. But for those with sleeping problems, like Shand, the results may be even more significant.
Basic tasks like driving can be dangerous or difficult without treatment. Job and academic performance are threatened by abrupt awakening and sometimes even numbness. Interests and social life can fall by the wayside, too.
“Adderall gave me my life again, ” said Shand. Going from taking drugs to no working is like riding a roller coaster. ”
The resulting issues, she said, have made especially clear the grief of living with a unique and misunderstood condition.
What Is Narcolepsy?
An estimated 1 in 2,000 people in the United States live with insomnia — more than 160,000 people global. The condition is a member of a larger group called hypersomnolence diseases, or conditions that are difficult to remain awake during the day.
There are two main types of insomnia.
Both kinds affect one’s ability to stay alive, but Type 2 is usually less significant. In addition to sleeping disturbance, most individuals with Type 1 insomnia experience immediate, temporary loss of muscle control or immobility, called narcolepsy.
Depression attacks are usually caused by feelings like joy or surprise. An assault might look like a loose neck or floppy hand for one person who has narcolepsy. For another, it may cause full-body numbness.
Type 1 insomnia may be caused by autoimmune conditions and brain injuries, but it is thought that the root cause is hypocretin, a hormone thought to have an impact on REM sleep, the dream state.
“Narcolepsy is due to a faulty change in the mind for Deep sleep, ” said Medical Director of the University of Florida Health Sleep Center, Muhammad Ali Syed.
People with insomnia go into REM really fast, Syed said. After falling asleep, a man without a sleep disorder goes into Dream for about an hour or 90 minutes. However, a person with insomnia may enter REM nearly right away and be capable of having a fully realized dream in just a few minutes, according to Syed.
In some instances, ailments can also include sleep paralysis and illusions.
Increased Need
Every week since the Adderall lack began , People who are battling to get their medications have contacted Faerieeha Hussaini, a sleeping medication expert at University of South Florida Health.
College students are concerned about dropping levels and passing examinations. People in their 70s, who have managed signs with Adderall for years, are then forced to switch to another drugs, like Ritalin.
Hussaini and her team at USF Health have worked to assist clients in changing care programs, but there is no disputing the additional strain. Some people are concerned about what a novel strategy might mean for their quality of life as the scarcity continue.
Pharmaceutical inequities in the United States. S. aren’t novel, but the past couple of years have brought an all-time great, said Michael Ganio, who directs store process and excellent for the American Society of Health-System Pharmacists, which represents professionals nationwide.
The Adderall lack, Ganio said, is linked to increased need.
The covid-19 epidemic brought on a flood of new ADHD treatments. Studies have discovered that a lack of regular and improved screen time may have been factors. With those symptoms came an increase in drug treatments, Ganio said — usually via healthcare.
Adderall is a Schedule II managed material. Because of the possibility of being diverted for outdoor use, it is highly regulated. Prior to the pandemic, people were required to have an in-person dentist appointment to get a dosage. However, during the public health emergency, that need was removed, and healthcare appointments were permitted. The healthcare salary has since been extended.
“There’s a broad group of patients who never had access, or suddenly have easier access, to providers who can make that diagnosis and prescribe, ” Ganio said.
The DEA’s creation restrictions add another factor to the lack. Essentially, each drug manufacturer receives quotas for the amount of drug they can make. It can be difficult to tell whether the DEA restrictions are very low or whether the companies are n’t producing at full capacity because producers are protected by trade secret safeguards.
In a combined letter In August, the FDA and DEA officials urged companies to collaborate to improve production and ensure that they were working to meet their production goals.
A Logistical Nightmare
From the parking lot of a Pinellas County, Florida, Walgreens in November, Nadine Dixon, 50, waited impatiently to possess her Adderall prescription filled. She had sat in the parking lot of a pharmacy for the next time that day.
For Dixon, who gets her prescribed through regular in-person sessions with a physician, the past year has been a administrative nightmare. She claimed that the bureaucratic complexity of the shortage has been made worse by the bureaucratic complexities surrounding Schedule II medication.
Unlike, say, blood pressure medication — which can be dispensed to people in a 90-day offer — Dixon can get enough It only for 30 time, and automatic supplies are never allowed.
Her anxiety rises as the month’s end draws near and her pill bottle fills up.
At her doctor appointment, she picks up her prescription, commencing a cumbersome routine.
Some months, she has had to drive to upward of 10 pharmacies to find her medication. She occasionally calls in advance to see if someone has it, but she hardly ever gets a response.
When she finds a pharmacy that has Adderall, a new challenge hits. The pharmacy may turn her away because of the small details, such as a number written with numbers instead of being spelled out, or a doctor’s signature that appears slightly different than it did the month before. The only course of action is then to drive back to the doctor’s office and request that the paperwork be adjusted.
Doctors can send electronic prescriptions to a pharmacy to avoid the issues with handwriting, but those pose their own complications: They can be sent to only one pharmacy at a time, and can’t be transferred.
Patients must go back to their doctor and request that the prescription be sent to another pharmacy if the receiving pharmacy is out of stock. And often only the doctor — not a nurse, nor a physician assistant, nor a staff member — is allowed to address that call for help.
Luis Enrique Ortiz , a sleep medicine specialist at Johns Hopkins All Children’s Hospital, said that ’s put a strain on doctors, who are juggling efforts to rewrite prescriptions, guide patients, and handle appointments and research.
The result is often a delayed response.
“It can be really nerve-wracking, ” Ortiz said. They require this medication to function normally because their time is running out. When they do eventually receive it, they are unsure of what the upcoming month will hold. They must go through it all over again. ”
Dixon, who was first identified with narcolepsy and cataplexy in 2010, estimated that since the drug shortages have started, she has spent up to eight hours a month attempting to get her medication. In three of the past six months, her prescription has n’t been filled on time. She has experienced four or five day delays.
The results are terrible migraines, mood swings, muscle weakness, and — of course — sudden sleep, she said.
You seem to have been awake for four days straight, Dixon said, and you’re trying to keep your eyes open. “The second I sit down, I fall asleep. ”
Dixon described herself as an energetic person when she’s on medication. She works an online job for extra money while raising a single mother for an elderly woman. She has a full social life, too.
But without medication, she said, her life comes to a standstill. She can’t go have drinks with friends. She can’t go for walks. Simple conversations about stressful subjects can lead to cataplexy attacks, which cause her limbs to become numb.
“It’s really horrible, ” Dixon said. Your body feels strain from irregularities with the medication. ”
She received a call almost an hour after she arrived at the pharmacy that November day, asking her to come in from the parking lot where she had been waiting. They could n’t fill her prescription, the pharmacist told her. The prescription contained an error.
They left her with a sticky note outlining the necessary adjustments.
She drove back to her doctor’s office, but when she got there, she learned the doctor had left for the day.
She would need to try again the following day.
Stigma and Hope
Adderall is n’t the only treatment used for narcolepsy. Other stimulants, as well as newer drugs made specifically for treating sleep disorders, can help, but those can come with hefty price tags and insurance battles.
And when a patient finds a drug that works, any change can be scary, Shand said.
Since her diagnosis, Shand said, she’s tried at least three other treatments.
Adderall has been the only stimulant that has really kept me awake and feeling like I could go through my day without falling asleep, she said.
She’s been able to get her prescription refilled since fall began, she said, but she’s learned not to get comfortable. She never knows what local pharmacies ‘ stock will be in the coming month.
The years since Shand’s diagnosis have brought waves of frustration and grief as well as a sense of loneliness for the patient who has narcolepsy with cataplexy.
In television and movies, narcoleptics are often the butt of a joke, she said. Most people, she’s found, don’t really know what narcolepsy is.
“It’s not actually all that funny, ” Shand said. “It’s genuinely debilitating. It’s life-altering. ”
___
© 2024 KFF Health News.
Distributed by Tribune Content Agency, LLC.
