Health care

Surging demand leaves many without crucial diabetes and ADHD medications

For many patients, these medications have been life-changing, or even lifesaving. Getting their hands on them, however, can be another experience entirely.

Alex Ford/Getty Images

This story is part of "Out of Stock: Investigating America's Drug Shortage Crisis," a series exploring the causes and possible solutions of a problem plaguing America's health care system.

The sudden surge in popularity of drugs like Ozempic, driven in part by its weight loss benefits, is contributing to a record-high number of prescription drug shortages and sparking tense exchanges on TikTok.

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Tammie Largent-Phillips, a resident of Green Cove Springs, Florida, relies on Ozempic to manage blood sugar spikes caused by her other medications. She first learned of the shortage on the social media app, where it has pitted diabetes patients against weight-loss patients as they compete to secure their treatment from a diminishing supply.

“It was volatile because you had the diabetics who were like, 'Who are you to take our medication? We need it to live!' And then you had the obese patients who were like, 'Well who are you to tell me what I can and I cannot take?' I think it's still a hot-button topic on there,” Largent-Phillips said.

Drug shortages that happen when demand surges can result from a new drug’s entrance onto the market, or when a new use for an existing drug is discovered. In either case, the manufacturer didn't accurately predict the demand and cannot ramp up production quickly enough, said Jing Dong, an associate professor of business at Columbia Business School in New York City.

“We know the diabetic drugs now can be used for weight control,” she said. “So then it takes time to plan for the production and to build the production to meet these demands.”

ADHD medications like Adderall and Vyvanse are also facing shortages, due in part to a significant increase in diagnoses during the COVID-19 pandemic. These stimulant drugs play a critical role in managing ADHD by increasing neurotransmitters in the brain to improve focus, attention, and impulse control.

Shortages have left many patients struggling to obtain the treatment they need to effectively manage their symptoms and improve their quality of life.

Although the two types of medication have joined some 300 drugs experiencing a shortage, the underlying reasons often differ. While manufacturing issues and supply chain bottlenecks are common culprits in most prescription drug shortages, ADHD and diabetes medications are particularly affected by an unprecedented surge in demand.

"An explosion of demand"

Ozempic is in a class of medication called GLP-1, or glucagon-like peptide 1, agonists, which are primarily used to manage blood sugar in patients with type 2 diabetes.

When these drugs were found to also be effective for reducing appetite, demand surged dramatically.

“There is an explosion of demand from people who are struggling to keep their weight in control,” said bariatric surgeon Dr. Christine Ren-Fielding, director of NYU Langone's Weight Management Program. Her program writes approximately 1,000 prescriptions for these drugs each month.

The majority of people seeking these medications are not morbidly obese but rather those with 20-60 pounds to lose.

“They have not had anything available to them that was effective in the majority of cases to help them with appetite control, so that diet and exercise can actually work,” said Ren-Fielding. “This has given people hope. This has made people excited and hopeful that there's now a medication that can help them really get those 20 pounds, or 50 pounds, or 60 pounds off and they feel wonderful.”

According to a May 2024 poll by KFF, about one in eight adults in the U.S. have tried a GLP-1 agonist.

The surge in popularity has led to significant shortages, often leaving those who rely on the medication for blood sugar management at loose ends.

Largent-Phillips, who is 53 and works as a patient advocate, was diagnosed with systemic mastocytosis, a rare disease that sometimes necessitates high doses of the steroid prednisone. She was prescribed Ozempic several years ago to manage blood sugar spikes that can result.

When the shortages reached her pharmacy, Largent-Phillips’ doctor attempted to prescribe Wegovy, another hormone-based medication, instead. Her insurance company denied the request, however, as Wegovy is primarily approved for weight loss rather than diabetes management.

Although all drugs in the GLP-1 agonist class are essentially the same medication, their label indications often determine what uses insurers will cover. Diabetes medications like Ozempic and Trulicity are typically covered, while weight loss drugs like Wegovy and Saxenda face limited coverage unless specific health criteria are met.

Ren-Fielding noted that such denials can make it harder for patients to obtain the medications. 

"It's not just the shortages affecting patient access to care, but it's insurance coverage and the obstacles they are placing that are also contributing to shortages,” she said.

My fear was, OK, my blood sugars are going to go nuts and I'm going to end up in anaphylaxis again and I'm going to end up in the hospital on a vent.

Tammie Largent-Phillips, systemic mastocytosis patient

The coverage limitations and insurance-imposed obstacles can significantly restrict patient access, potentially exacerbating shortages by creating artificial barriers to distribution.

In the face of shortages, Largent-Phillips resorted to rationing her medication and developing backup strategies.

"We had to space out my shots. Instead of every seven days, we were doing them every 10 to 13 days," she said. 

Largent-Phillips now saves excess medication from used pens as a backup supply.

Her difficulty obtaining critical medications extended beyond diabetes drugs. She struggled to get access to a crucial chemotherapy drug for her condition for five months.

“They even tried to get my medication from overseas and have it shipped in, and they couldn't do it. I mean, it's not just the diabetic drugs. There are people who have cancer [and] they're saying, ‘Hey, I don't have your drug at the pharmacy.’ It's getting to be ridiculous.”

Forty years after the Hatch-Waxman Act, which provided widespread access to affordable generic versions of medications, the market is struggling with persistent shortages brought about partly by low prices.

Although GLP-1s are relatively cheap to produce, their market price can be extremely high. People whose insurance will not cover the medications face steep out-of-pocket costs, with some drugs topping $1,500 a month.

“These costs are prohibitive for the average individual,” said Ren-Fielding. “There are many people who can afford it and they say no problem, I'll pay that. But the vast majority of people cannot.”

Novo Nordisk, the Danish pharmaceutical company behind Ozempic and Wegovy, has faced scrutiny over the high prices of these medications in the U.S.

During a recent Senate hearing, CEO Lars Fruergaard Jørgensen defended the pricing strategy. He argued that a high list price is more likely to lead to greater patient access, as it allows for larger rebates to pharmacy benefit managers (PBMs) -- intermediaries that negotiate drug prices between manufacturers and insurers, significantly influencing drug costs and access.

When Sen. Bernie Sanders (I-VT) asked if the company would lower prices if PBMs committed to maintaining coverage, Jørgensen was noncommittal, saying he would need further details. He also noted that Ozempic's net price has declined by 40% since its 2018 U.S. launch.

The high price of brand-name versions can lead some patients to resort to compounded versions of the drugs. Compounding pharmacies create these formulations by mixing raw ingredients, replicating the effects of mainstream injectables like Ozempic or Wegovy.

Some healthcare professionals and organizations caution against using compounded drugs, as compounded drugs are not FDA-approved and could have inconsistent potency. The FDA has issued warnings about the risks of compounded semaglutide.

Ren-Fielding and her team often ask visiting pharmaceutical sales representatives what is being done about the shortage.

“They say that they are working as hard as they can, as much as they can,” she said. “What I'm being told is that their production is high and it's just that the demand is even greater than that.”

When asked what steps Novo Nordisk has taken to address the shortages of its highly sought-after medications, a representative said that the company is investing heavily to meet the growing demand.

“Increasing our manufacturing capacity is a key factor in our ability to produce more medicines and we’re investing heavily to ensure that we’re growing to meet demand and continuing to run our facilities 24 hours a day, 7 days a week," Allison Schneider, director of media relations & issues management at Novo Nordisk told NBC.

Novo Nordisk’s total production investments for 2024 reached $6.8 billion, up from $3.9 billion in 2023.

The shortage "that never ends"

For pediatric neurologist Dr. Max Wiznitzer, based in Cleveland, Ohio, past shortages of ADHD stimulants were less severe than the current ones. 

“We never had to make as many phone calls. We never had to write as many additional prescriptions as we've had [to] for this month,” he said. “The one that never ends.”

Wiznitzer attributes the shortages partly to an increase in demand resulting from a rise in ADHD diagnoses and prescriptions for stimulant medications such as Adderall, Vyvanse and Ritalin.

The demand for ADHD medications has surged in recent years, mirroring the trend seen with GLP-1s: according to data from IQVIA, a health analytics data provider, prescriptions for ADHD medications in the U.S. rose from 35.5 million in 2019 to 41.4 million in 2021, an increase of nearly 17% in just two years.

The COVID-19 pandemic, which necessitated that many children transition to distance learning at home, also contributed to the increase in pediatric diagnoses.

"Put an unmedicated or untreated ADHD child in front of a computer and tell me how much they're going to learn," Wiznitzer said. "But the parents are now watching like, ‘Oh my gosh, is this how my child behaves in school?’ All of a sudden there's a further rise in the recognition of pediatric ADHD because now the parents are seeing what the teachers are seeing."

While ADHD diagnoses in children have stabilized post-pandemic, there has been a rising wave in later-in-life diagnoses in recent years, leading to a higher number of prescriptions for stimulant medications among adults.

Wiznitzer noted that, several decades ago, ADHD was often dismissed as not a real disorder, and was primarily viewed as a childhood condition.

"When I first started in the 1970s in pediatrics, we were taught you outgrow ADHD by age 16,”  Wiznitzer said. “So that means that there was an entire adult population out there that was totally unrecognized and unidentified, and just waiting to be shown.”

It's been such a huge improvement on my life and well being. When I'm going through withdrawal, it's like I'm defunct. I just can't function. Entire days are wasted because I can't really do my work. [I have] headaches, fatigue. My brain just doesn't work.

Dylan Rice, ADHD patient

According to Children and Adults with Attention-Deficit Hyperactivity Disorder (CHADD), a nonprofit organization that advocates for individuals with ADHD and their families, approximately 80% of children diagnosed with ADHD continue to experience symptoms into adulthood.

The rise in adult diagnoses has put additional strain on medication availability.

"If I only increase the stockpile of the medication by 1% and there's a 10% increase in demand, where are we going to end up? We're not going to have enough medication, right?" Wiznitzer said.

"A game of whack-a-mole" to find medications

Dylan Rice, a 27-year-old communications professional in New York, sought an ADHD diagnosis in 2020 after long suspecting he had the condition. Upon receiving his diagnosis and starting treatment with Adderall, Rice quickly encountered difficulties obtaining his medication.

"It's been gone for maybe two, two and a half years now. It's become the norm," Rice said. He described the process of finding a pharmacy that can fill his prescription as "a game of whack-a-mole."

Patients often bear the burden of locating pharmacies with stock. For ADHD patients this can be especially fraught due to pharmacy concerns about drug-seeking behavior. Some patients resort to costly brand-name prescriptions not covered by insurance, or rationing medication to ensure they have it when they most need it.

"I tend to ration to have this safety net in case that happens again. So I have a few to get by," Rice said.

Rice described the stark contrast between life with and without medication.

“It's been such a huge improvement on my life and well being. When I'm going through withdrawal, it's like I'm defunct. I just can't function. Entire days are wasted because I can't really do my work. [I have] headaches, fatigue. My brain just doesn't work,” Rice said. “It feels degrading, to not be able to just be who I am and take myself to my full potential because there's just a supply shortage of a medication that's so useful and beneficial to people who need it.”

Medication shortages can have an impact on not only the patient, but can reverberate into their community as well.

“If you can't get your hands on the medication, that means you cannot adequately treat the ADHD, that means that that individual is going to be symptomatic. But that individual is not an entity unto themselves.” Wiznitzer said.

Untreated ADHD can have an impact on a patient’s performance and behavior at school, and behavior disruptions can have a harmful effect on the family unit, Wiznitzer added.

Generic drugs currently account for more than 90% of prescriptions and have saved the country almost three trillion dollars over the last decade. Here’s how a brand-name drug typically becomes a generic drug.

New regulatory changes could alleviate shortages

In response to the ongoing crisis, manufacturers are working to increase production capacity, and regulatory agencies are exploring policy changes to mitigate the impact of these shortages.

ADHD stimulants are categorized as Schedule II substances and so face additional hurdles to market, including manufacturer production quotas set by the Drug Enforcement Administration (DEA). These quotas are intended to ensure adequate supply while mitigating the potential for diversion and abuse.

Some manufacturers argue that these quotas restrict their ability to keep up with the rising demand. But the DEA has countered that many manufacturers have not fully utilized their allocated quotas.

In response to ongoing concerns, the DEA recently announced changes to the quota system. After briefly implementing a quarterly allocation system in early 2024, the DEA has now shifted to semi-annual quota applications for most Schedule II drugs.

Wiznitzer believes this policy change will help address the problem by allowing for more flexibility in the case of rising demand.

“That is a more rational and reasonable way of doing it,” Wiznitzer said. “In those cases, they can spot more quickly if there's an increase in demand and adjust the quotas. Or [if] there's decreasing demand in one sector, maybe increase another and reassign the quotas. And also monitor to make sure that companies are doing what they claim they're doing.”

In addition to these changes, Wiznitzer said that insurance companies could do more to help patients when there is a shortage by allowing patients to temporarily use brand-name equivalents, not just generics. They could also loosen up restrictions about what pharmacy chains patients may purchase prescriptions from.

“We have to have more flexibility from the insurance companies, and we have to have flexibility from the government,” he said. “And we have to have the recognition that we have to stay on top of this. We have to monitor closely what the demand in the community is for these products to make sure that we have enough available inventory. It's like any other product.”

"A constant source of anxiety"

Some patients find it hard to remain hopeful that shortages won’t continue into the future.

Not having access to his ADHD medication, Rice said, makes life difficult, but he’s aware that for some these shortages are life or death. 

“There are certain things that the free market shouldn't just be allowed to operate on unimpeded, in the case of something as important as a medication being either prohibitively expensive, or just out of supply,” Rice said. “It shouldn't be happening in a society that prides itself on being the richest and most prosperous society, [that] things like this can fall through the cracks.”

For Largent-Phillips, shortages can have dire consequences – going without her medication could land her in the ICU. 

“Because of my rare disease, any change in anything can cause me to go into anaphylactic shock,” she said. “I'm pretty much allergic to myself.” 

The fear of her blood sugar spiraling out of control due to medication shortages is a constant source of anxiety.

“My fear was, OK, my blood sugars are going to go nuts and I'm going to end up in anaphylaxis again and I'm going to end up in the hospital on a vent.”

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